On Friday, July 16th, which was a beautiful sunny day, I drove to the CLSC in Rigaud (one of the local government run health clinics) to see my favourite nurse, Manon, to have my colostomy bag changed.
The objective is of course to have me able to change my colostomy bags myself as expertly as any of the nurses or dedicated stomothérapeutes—as we call them here, who work in hospitals and do community outreach—as soon as possible. But clearly, there’s an art to changing the bags, because of the five first bags that were attached to me by a nurse during the first month or so after my surgery, two eventually sprang leaks* . I’m happy to say that I’ve successfully changed my bag by myself twice already. But Manon says that it’s good to keep coming back, because my stoma hasn’t yet assumed its final, healed shape.
(* the fecal matter that can leak if the bag is not perfectly sealed to the skin is very acidic, and can severely irritate the skin around the stoma. It’s the most serious problem for colostomy patients.)
Manon looks like a kid with her long curls and glasses (that don’t succeed in hiding her pretty face), and her energetic way of speaking, but she’s in her fifties. She’s experienced and seasoned. She has overcome a burnout.
The colostomy bag I was wearing was beige. It’s meant to hide your feces from public view if your bag is exposed by a breeze or whatever, but it means that you can’t see what’s happening inside the bag. Most experienced patients are happy to forego those sights, but I was just four weeks into the “ostomy” life. Still, the day before my appointment with Manon, I noticed something happening, just by feel. My stoma, which should lie flat against my abdomen, had lengthened. I could feel at least 3-4 inches outside my body.
When I arrived at the CLSC the next day, I mentioned this to Manon, but the shape of my stoma seemed different. I lay down on the bed and we got down to bag business. And then she removed the bag and the flange that it’s attached to, and out came this great glob of tissue (my stoma) along with a large hematoma (an even larger blood bubble). We both gasped, I think, and Manon’s entire demeanor changed. She immediately said that I had to be sent to Emergency at the CHUM. Nowhere else would do. The hematoma was “active”, that is, as soon as it was touched, it hemorrhaged.
I took a picture of it while waiting in the CHUM’s emergency room till 11 pm before being sent up to the 12th floor (digestive surgery), but it’s too graphic. Let’s just say that the first image that popped into my mind when I saw it on my belly, red and swollen and wiggly like Jell-O, was of the jellyfish that used to float in on the waves of the beaches of Prince Edward Island when I was a child, and which would have fit in a cereal bowl, just barely.
And so I had to have my second colostomy in a month. They call it a revision, but my surgeon told me she had taken another foot of bowel (she showed me with her hands spread) to make sure there was no repetition of the prolapse. With all of these dramatic diagnoses and emergencies, I didn’t have time to follow-up with the eye surgeon who had done my cornea transplant the previous December. Everything seemed to be going well between January and the end of April, and then pollen season struck with a vengeance here in Hudson, and my right eye was irritated and running incessantly.
I ended up seeing my surgeon on August 30th. Cornea transplants can take up to a year to heal and vision to be restored, but my eye was a disaster, and I was sure that it had rejected its new cornea. Sigh. I found it hard to muster anything but sad resignation. I’ve been so tired.
It turns out that the transplant is okay, but my thin, dry and fragile cornea has sprung a new leak. So that was sliced and patched with glue, and a protective contact lens installed right there at the ophthalmology clinic.
My second colostomy surgery doesn’t seem to have solved my prolapse problem. Until my bowels move regularly (they have been traumatized by two surgeries, and my intestinal flora depleted by intravenous antibiotics), I will have to deal with daily prolapses that are caused by intestinal gas and my bowels’ attempts to move poop through the stoma.
It’s uncomfortable, embarrassing and always potentially dangerous because a swollen, prolapsed stoma can become strangulated by the flange that encircles it—which is what brought me to the emergency room mid-July.
And then there’s this business of living with one eye that sees and one eye that burns and is crazy-sensitive to light, and wants to shut all the time, and is being irritated by a contact lens…
It’s more disorienting than being completely blind in an eye, because my good eye can’t ever really adjust, and its vision is impaired, too, by the eye protector I wear on my sick eye and the perforation itself, keeping everything to my right looking like it’s been smeared with Vaseline. I can’t see my right hand if I move it up close to the right side of my face…
The strangest thing is that none of this is cancer; only the side effects of the disease and its treatment.
But I feel as though I have slid down several rungs of wellbeing. I lost a lot of weight through all this and putting it back on is much slower than I expected. And I’ve realized that I can’t get through a day without at least one nap—especially since my right eye wants only to shut and see nothing.
Sometime through all of this, I found myself humming the song Moonshadow, by Cat Stevens. Stevens popped up on my radar a few years ago. I think he’s been rediscovered—an unforeseen side effect of COVID-19. That song, which I’ve always found to be lovely, came back, again and again—an earworm, they call these. So I went to YouTube and watched him performing it.
And it hit me. And I sat there dumbstruck while he sang.
Are you familiar with this song? Have you ever listened closely to its lyrics?
MOONSHADOW
BY CAT STEVENS
Yes, I’m being followed by a moonshadow Moonshadow, moonshadow
Leaping and hopping on a moonshadow Moonshadow, moonshadow
And if I ever lose my hands Lose my plow, lose my land
Oh, if I ever lose my hands Oh, if, I won’t have to work no more
And if I ever lose my eyes If my colours all run dry
Yes, if I ever lose my eyes Oh, if, I won’t have to cry no more
Yes, I’m being followed by a moonshadow Moonshadow, moonshadow
Leaping and hopping on a moonshadow Moonshadow, moonshadow
And if I ever lose my legs I won’t moan, and I won’t beg
Oh, if I ever lose my legs Oh, if, I won’t have to walk no more
And if I ever lose my mouth All my teeth, north and south
Yes, if I ever lose my mouth Oh, if, I won’t have to talk
Did it take long to find me? I ask the faithful light
Oh, did it take long to find me? And, are you gonna stay the night?
I’m being followed by a moonshadow Moonshadow, moonshadow
Leaping and hopping on a moonshadow Moonshadow, moonshadow
What was happening in his life when he wrote it? This lovely, cheerful melody carrying lyrics about loss—physical loss—and finding the grace to accept it.
Perhaps, young as he was when he wrote it, he was thinking of an aging family member or friend, and that inevitable march toward the end of life.
Perhaps the faithful light is hope, or a divine presence, or simple awareness…
I love that he chose to cast his questions against the background of the sky, of the heavens, and of light and shadow.
I think my memory floated this song up into my awareness the way a good person would hold out a hand to someone struggling. I have been followed by a moonshadow for months now, and it seems that my ability to leap and hop isn’t what it was.
I have more lessons to learn. About acceptance. And resilience.
This morning, I checked to see what Facebook had in my Memories cache, and one of the things it selected was this:
“One word Frees us of all the weight and pain of life: That word is love.” ― Sophocles
Art: Guy Denning, “Feedback effects (for the future generations, to have air, sea, ground”, 2020
PAIN, Part One
Just a few months ago, the balance that cancer and I had wrested from each other came to an end. The pain in my upper back that modern medicine and wonderful clinical care had brought under control for weeks returned, unwelcome. Eventually, a tumour was discovered between my first and second thoracic vertebrae, and radiation treatment was prescribed.
These are the stories that I don’t want to tell. They make me the worst kind of messenger. They rattle my mother, upset the people I love and who love me back, dampen the possibility of joy.
What’s worse, they have to be told again and again, over and over to those who want to KNOW what’s happening to me and how I am. And they deserve the truth—which places me in the strange position of trying to find ways to speak hard truth gently.
This is how I came to use voice recordings more and more often. In as little as two minutes or as much as twenty, I can send a recorded message to many people, filled with facts, but softened by my voice which seems to have a soothing effect on the listener.
I need only warn the listener that I first recorded the message for another loved one…
No one has yet held it against me.
* * * *
Edited voice recording sent to my brother-in law, Charles, May 22nd, 2021
“Good morning Charles, I saw your message. It’s a quarter to ten here. I guess you want to know how things are going […]
Uh yeah, it’s not a fun patch. A couple of weeks ago, they found in my latest MRI, after it NOT turning up on a bone scan; NOT turning up on 2 CT-Scans and NOT turning up on a first MRI… they found a tumour between my T1 and T2 vertebrae, which is very high up, just at the base of the neck, and it has filled the epidural space on the left side of the spinal column and is full, full, full, and close to the spinal column and, uh…it hurts like hell, and it’s really awful […] it was a big disappointment, but here’s the interesting thing:
A lot of people remember the blog post that I put up last December which was about having a corneal transplant but having these terrible spasms in my back and being told not to move—and feeling like I was in a Cronenberg movie at that point, especially because they were just putting in the temporary lens that day and I was still so shocked by what was happening to me…
And, well, of course that was the tumour. And it’s been sitting there for well over five months (perhaps much, much longer) and NOTHING made it detectable. None of those tests, the bloodwork, the enzymes that they monitor for tumour activity—the level was 4 [I think], which is like basic humans with not a trace of cancer…
But then, in the […] most recent test I had, it was up to 42, and Dr. Aubin had been saying: “Look, we have to keep digging, there’s…Ça me fatigue [this is bugging me] , and so I went for another MRI a couple of weeks ago, which did all of my spine—I’m not in the least bit claustrophobic, so none of this is hard on me—you just tell me to lie down and be quiet and okay, did I die and go to heaven? [laughing] .
And that’s when they found it, and it’s very serious, and the radio-oncologist, Dr. D, who has my file, at first wanted me to undergo surgery, and then I went upstairs to see the surgeon. And he said something like No, it’s too big a surgery; we’d have to fuse those two vertebrae (I would never be able to turn my head again).
I like that they worry about things like that—there’s something somehow optimistic about that…
Anyway, so he [Dr. D] has been looking into—I think he’s been spending hours trying the find the very best way to do this radiation treatment. I’m only having five treatments, it’s a very small area that doesn’t require having the shit blasted out of it because my spine won’t survive if we do that, so…
It’s all supposed to be happening next Wednesday, Thursday, Friday and the following Monday and Tuesday when I also have the final, routine CT-Scan for my research protocol [or clinical trial] which will now end because there is progression of the disease, so then, you lose that status, but you keep your oncologist, which after three years, I would think that’s pretty close to normal for most patients in a research protocol .
Um…but um…I’ve had it explained to me the excruciating pain I was in last December getting those eye surgeries…
When you’re telling people “I have back spasms, I have terrible spasms” (when I should have been saying I’m in pain), but um…my oncology team knew [I had informed them that fall] and we were able to get that pain under control …and then it was triggered again […]
Also, when they did the very last MRI,–the biggie—my research nurse Chantal said “Your back is full of arthrosis”, which I think is a side effect of the immunotherapy drug, and so there’s some camouflaging in there, and it would be why, with perfect bloodwork, and no other indications, and perfect weight, Dr. Aubin confidently said last December to whoever was in the room with me that day : “Madame Payette est une patiente qui va exceptionnellement bien” (trans: Mrs. Payette is a patient who is doing exceptionally well).
And Simon reminded me that when I was first diagnosed with Stage 4 cancer, Lucie Daoust [my sister-in-law] who is a radiologist, and has been for 35 years, said to Simon: “Your mum’s bloodwork was perfect. Everything was perfect. There was no way to know.”
So, I have a type of cancer that really enjoys just making things difficult to diagnose.
So I’ve been in a lot of pain –real, real serious kinds of pain.
What has been most difficult was last week: for the preparation and positioning for radiation treatment. That work has to be done because you can imagine how pinpoint this is, and how I would never want to have that responsibility or that kind of a job.
Umm…they put me into a kind of neck brace and then they make this mask that they heat up and then they paste it across your face and upper shoulders—effectively forcing your eyes and mouth shut— and then they bolt it down to the sides of your neck support and this is meant to immobilize you totally, for when you go in for the actual treatments, and the second they did that, they triggered –it’s pressure—the area with all the inflammation and …
It was excruciating. And I had to lie there like a dead fish for half an hour, and then I had to do it again a second time, and while that was done, I was having flashbacks of last December, when I was strapped down and in such pain—and at that time the ophthalmological surgeon was talking to the “fellow”, his “fellow”, a resident doctor, and telling him everything he was doing to my eye (it was like being in a horror movie) …uh…but he didn’t know, and…I didn’t know, and what could I say?
Um…so it’s been um…scary and sad, you know, and a lot of crying because, well, this is a whole other picture now, and so I’m hoping that they’ll be able to get as much of it as possible so that pain is reduced for at least a reasonably extended period—which would be really nice—because not sleeping, and not…well, these things are debilitating.
But I otherwise actually feel quite good, which is the thing that’s very weird. Um…so that’s that. You know, morale-wise, it’s been…okay now…we’re in an adjustment now: I have to…um..I have to reconfigure my life and sort of look at what’s ahead, and how I’m going to live and prioritize and accept certain things…
But right now, I feel like I have a ticking time bomb at the back of my head…
When he first called me, Dr. D (my radio-oncologist)—this was Friday a week ago—said: “Well, you’re coming in today”, and I had answered “No, I don’t have an appointment today”, and he said: “But you have to come in today, you have to come in today, I have to see you!”
and then, well…anyway he had to get off the phone because he’s got other patients. So then he called me back in the afternoon […]I remember saying first, “ Well, okay, give me a sense of the urgency of this. “
And he said “ “It’s okay, I have an appointment for you next week. You’ll be coming in for the prep…”
And I said to him, “Well, Doctor […] you seemed very alarmed on the phone in the morning”, and I said, “I just wanted to know why,”, and he said “Well, uh…uh…the truth is if you do something…if something happens to worsen this, you’ll be paralysed.”
And I thought Och! Jeez, Okay, well that gave a very brief and to-the-point explanation of what was going on but then, Charles, when I went to meet him early the following week—this is all in the 3rd basement of the CHUM—I go down and spend a little bit of time with him, and then I go up to see the neurosurgeon on the 13th floor through a dedicated elevator (I never have to come in contact with anybody else),
then I go back down to see him—it was about one o’clock—and by then I was sitting in the waiting room and was just trying to do some yoga breathing, just sitting there with hands on my knees—so not crossing anything, and just doing some breathing, which has been immensely helpful—thank god I had that—and this man, who always seemed…who has the delivery of a Gatling gun, the way he speaks because it’s so direct…(but also hushed),
but I open my eyes and there he was, he was waiting for me to open my eyes—he didn’t want to startle me—he didn’t say a word, he just sort of took his index finger, sort of as if to say…his hand going “follow me”, and walked away towards his office, and I thought:
What human being thinks to be that uh…kind, or gentle?
And that’s been my thing: he’s called me every day at home since then, to see how I’m doing.Now, this is a radio-oncologist! Who is stressed up to his wazoo and who has more patients than he can deal with, I’m sure, and this is my experience of this man.
So…it’s a rather extraordinary life experience, all this, and uh…so we talked, and when he called me yesterday, well, I was able to tell him that I’d had a good 6 hours sleep the previous night and …
I’d been having night sweats, where I woke up and looked like a sheep because my hair was getting longer and it was like sweat curls, the way Penelope used to get as a little baby, and all the sheets of my bed and pajamas…everything was soaked through—cold—not feverish at all, but that has subsided for the last 2 days so I think that’s the Dilaudid,
and so it looks like…
my panic was that when I go in next week for radiation, for the five sessions, as soon as they lock my masked face to the neck support, the pain is going to start shooting and I didn’t think I—I honestly do not think that I can do that again five times, and I think there’s a limit,
and so my only thing was “drug the crap out of me” , drug the crap out of me so that this is not a factor.
I have no claustrophobia issues, I just don’t think I can go through that…
being tied down and in pain is torture, and…that’s the end of that story. And Dr. D agrees and …
anyway, so my team have prescribed double the dose of Dilaudid and I’m on cortisone—something called Decadron, which I think sounds like an end of the world drug or something that’s delivered in rockets, but anyway…
Um…and so that’s that Dear Charles, you’re up-to-date and I’m going to put a blog post up…
I’m very reluctant…when you post something while you’re right in the middle of the shit. But there’s always more to it than the shit, like what I told you about Dr.D…
There’s something…there’s light, in all these experiences…and I have to find all the light before sitting down to write. And so it will all come out, I think quite soon, because I’ll have time to sit and write.
I can’t do a whole lot until they’ve got this thing stabilized. Um…and that’s it. […] “
Photo by Domenico Mastromatteo
* * * *
In the end, the Dilaudid was effective and I was able to receive five radiation treatments between May 25th and June 1st.
But nothing is quite the same anymore. Cancer reached my bones, right under all our noses. And its position, between T1 and T2, means that if something goes very wrong; if, for instance, I’m in a car accident that impacts my neck, paralysis would be from the neck down.
Cancer keeps pulling the fences in and in.
And experiences like the two hellish preparation sessions for radiation allowed me a glimpse of my vulnerability, and of the ways I continue to be made more fragile by cancer treatment.
* * * *
THE RADIATION PREPARATION IN THREE ACTS
A poem
1. The first act
The moment when they say
they need to pull my robe down
In this cold space
and I lie there, my
breasts exposed to the
eyes of strangers
women technicians speaking
to each other
such an intimate
such an altered
part of me
small, my nipples
so much darker and fragile
in the cold—and feeling
embarrassment for my body
and knowing that this
will continue to happen.
2. The second act
When after the first scan,
which was so painful, I am
released from the neck brace and
immobilizing face net
and asked to sit up
both technicians catch me,
both of them saying Whoa!
as they steady me.
“On vous perdait”
We were losing you
about to fall
right off the platform.
3. The final act
The second MRI
so quickly after
The third time
I am locked into the
neck support
and when it is finally done,
Asking the technician to my left if
She can also help me sit up…
because the thought of even the slightest
twist to my
back would make me pass out
and being so cold…
which is a terrible thing when
you’re already riddled
with muscle contractions
then, sitting in the
changing room in pain
shaking like a leaf
my mind going back to that
first eye surgery
two seasons past
and the sharp
unexplained
back spasms I was having
put on that gurney and
told:
“Ne bougez pas”
While the surgeon cut into
my cornea
to remove the torn portion
and replace it with
a temporary lens
Memories formed in
pain, muscle, bone
and the soft flesh
of the body
and a hidden chamber
as old as me where
the deepest
darkest
trauma-drenched
memories live.
Image: The head and shoulder mask made specifically for me and designed to keep me completely immobile during radiation therapy. The silhouette is moulded exactly to my body (though I’m not actually wearing it in this photo).
* * * *
My sister Marie, who lives in West Vancouver, has found it hard to deal with the paralysis caused by COVID-19, especially because it has made it impossible for her to fly east, to us.
Recently, her frustration having reached a new level, she posted a nifty FUCK CANCER ! image either in Messenger or elsewhere on Facebook (I tried to hunt it down but failed)—a graphically clear expression of her solidarity with me.
I responded.
Bless her for making me laugh. Bless her heart, which is at least two sizes too big.
A MICROSCOPIC TRAGEDY
Hahahahaha!
Marie, I don’t feel that way! Interesting right?
Cancer isn’t some invader…cancer doesn’t know it’s the Big C. Cancer is a bunch of messed up cells made in my own body, that are misfits; malformed but still reproducing, damn it, not realizing that they have set themselves on the road to suicide.
If they could know, they would surely cease! I mean…what’s the point of killing Hotel Michelle, their home?
But just like the great amalgam of cells named Michelle is also capable of acting against her self-interest, so are these misfit cells.
A microscopic tragedy playing itself out under my skin
.
* * * *
PAIN, Part Two
The kindness and professionalism of the radiation technicians who gave me my treatments is extraordinary. The state-of-the art treatment rooms run like clockwork, but I never felt rushed; never felt jostled; always felt that I had their complete attention—that I was their focus.
Still, at day’s end, for the entire time I received radiation, and for the weeks that followed, I was afraid to sleep in any position other than on my back, with my neck vertebrae well supported (Dr. D. had encouraged me to do so), I often lay in the dark imagining my T1 and T2 being pulled at, twisted, or somehow compromised, and waking up one day unable to move. And so I spent every night during treatment lying on my back as still as a statue.
Then, slowly at first, pain arrived. It settled in the area of my sacrum-coccyx. it began as a low throb, and I thought: I’ve caused a pressure point. Maybe I’m getting a small bed sore?
At my next visit with Dr. Aubin, I mentioned it, and it was noted in my file.
Photos: My room at the CHUM (they are all identical and all single occupation)
Almost immediately, the pain grew worse, then worse again. There was no position I could sleep in. It was becoming impossible to sit, anywhere, for more than a few minutes.
It’s hard to imagine what not being able to sit down really means in daily life. Option 1 is standing and hoping some of the pain will subside. Option 2 is lying down on your side for as long as you can—on a sofa, in your bed—and then standing again. It is debilitating. I lost three kilos that week to the ugliest duo I know: pain and insomnia.
The following Monday, I headed to the CHUM for my pre-chemo bloodwork (don’t ask me how I managed to sit in the train for an hour…these are memories I would like to wipe clean). I think that there was the moment when Chantal came to find me on the 14th floor, and glimpsed me lying down across several waiting area seats, legs curled up, using a jacket to prop up my head, and asleep, and that it struck her how seriously wrong things were.
There had been a recent CT-Scan that showed a shadow of some sort in the area where I had all the pain, but neither the surgeon, Dr. Richard, nor Dr. Aubin, nor Dr. D could figure out exactly what they were looking at. Perhaps a small abscess, they thought, which could be monitored. It didn’t seem to be doing much.
Finally, on Thursday, June 10th, an early morning CT-Scan was again scheduled, which pleased me because I imagined myself being able to catch the noon train home…
What happened instead was that the instant my scan became available, my life jumped its tracks. Dr. Aubin, visibly agitated, came to get me and brought me to a gurney in one of the hallways on the 14th floor. It was a crazy-busy day at the CHUM (which has begun re-opening care to all of those who have been languishing on waiting lists since COVID-19 first appeared). Her face was flushed and I could almost see her heart pounding. Within minutes, I was hooked up to an I.V. into which a serious antibiotic was mixed.
I didn’t know it then, but I wouldn’t leave the CHUM for nine days.
The CT-Scan had revealed the presence of a very large abscess at the site of my original colon cancer. It also showed that the abscess had ruptured and was leaking fluid into my abdominal cavity. This is the precursor to peritonitis and septicemia.
I was moved to the 15th floor of Pavilion D, and kept on an I.V. of antibiotics. I ate nothing for 24 hours. By Saturday, I was moved to the 11th floor of Pavilion D, which is reserved for Chirurgie Digestive patients. More antibiotics were warranted before any surgery could be done. The latter was scheduled for Monday, June 14th. I stayed on my antibiotic drip, but was happy to learn that I was allowed a liquid diet (including Jello!). By Sunday evening, I was back to the antibiotic drip only.
I was taken into surgery at 7 am that Monday. It was Dr. Carole Richard, the surgeon I had first seen three years earlier: the person who delivered my original cancer diagnosis; and who looked at me that fated day with large blue eyes and an intensity I had never seen before in a physician, and given me HOPE, telling me about the clinical trial that was just starting, that she thought I might be just right for…
I woke up a few hours later, I suppose, though it felt like only minutes had passed. Dr. Richard confirmed that she had performed a colostomy (which we had discussed beforehand), and that the abscess had been drained. It was, she said, enormous—she had never seen such a big abscess.
Sigh.
The colostomy is permanent. My stay at the CHUM ended on Saturday, June 19th. I returned home more physically fragile than I’ve ever been, my skin literally hanging off my bones—all of the fat and a frightening amount of muscle vanished.
I’m now learning all about the bags, accessories and care of my stoma.
I can sit down without pain.
* * * *
THE LIGHT
Despite the relentless assaults of pain—and the ominous news it so often carries—my life has been filled with light. What I said to Charles over a month ago hasn’t changed.
Light found its way to me in places, through people, and in the most discreet gestures.
My friendship with Gail, and her willingness to help me find my path to being, and opening myself to Awareness, led to such marvellous Messenger exchanges as this one, which began with Marie Howe’s extraordinary poem:
Do you sometimes want to wake up to the singularity we once were?
so compact nobody needed a bed, or food or money —
nobody hiding in the school bathroom or home alone
pulling open the drawer where the pills are kept.
For every atom belonging to me as good Belongs to you. Remember?
There was no Nature. No them. No tests
to determine if the elephant grieves her calf or if
the coral reef feels pain. Trashed oceans don’t speak English or Farsi or French;
would that we could wake up to what we were — when we were ocean and before that
to when sky was earth, and animal was energy, and rock was liquid and stars were space and space was not
at all — nothing
before we came to believe humans were so important before this awful loneliness.
Can molecules recall it? what once was? before anything happened?
No I, no We, no one. No was No verb no noun only a tiny tiny dot brimming with
is is is is is
All everything home
_________________________
Reading it in the light of the past months, I immediately wrote to Gail:
Messenger: 31 May 2021
Gail, Is this Awareness?
Her answer was swift:
GAIL:
“Indeed! It is! We are the singularity. The singularity does not disappear when it bursts into the multiplicity, into what the Buddhists call “the ten thousand things”. When Marie Howe asks “do you sometimes want to wake up to the singularity we once were?” she overlooks the fact that we are still the singularity, that there is nothing, NOTHING that is not the singularity. When she sighs “would that we could wake up to what we were” she should know a) that it’s what we were, if you like, but more accurately it’s what we always are, and b) we CAN wake up to what we are! The gift of being human. Rupert puts it this way “ We, awareness, are that with which everything is known. We, awareness, are that within which everything arises. And we, awareness, are that whose activity appears as everything. All that is required is to understand this, to feel this, and to act, and to relate, to the best of our ability in a way that is consistent with this understanding.”
* * * * *
Then, there were moments of grace, such as when a friend of Simon’s, also a John Abbott College employee, asked me if I could perhaps tutor her in her very last French as a Second Language requirement—the only credits she still needed to obtain her DEC in Graphic Design…
Tracie, you wonderful, beautiful human being, you brought so much laughter and joy and satisfaction into my life. I will love you forever.
* * * * *
There were the bouquets I received while hospitalized, from people I consider both friends and family—bouquets so gorgeous that even Dr. Richard, upon entering my room on a follow up visit, stopped, stared and exclaimed: “Quel beau bouquet! Il est…magnifique! Je n’ai jamais vu rien d’aussi beau ! »
It was composed of all of the flowers that I knew to be in bloom in our gardens in Hudson, while a second bouquet, from the same family members, was composed of yellow-gold flowers only. When I saw it, I gasped: “Oh, they’ve sent me the Sun!”
In an unexpected moment of whimsy, one of Dr. Richard’s surgical residents, a Québécoise with clear Asian ancestry in each of her beautiful features, upon entering my room, walked over to the multicoloured bouquet, exclaimed how lovely it was, and then plucked from it a leafy branch saying: “And it even has eucalyptus!”. Then, laying it on my pillow, she said: “Keep it close, it’s aromatic.”
* * * * *
There was the afternoon, toward the end of my hospitalization, when Domenico, my dear CHUM friend, brought me a lemon sorbet during his afternoon break…
It was the most delicious thing I had eaten in days…It was perfect. And it cost him his short break.
I love you, Domenico. Your big heart, your spirit, and the way you look for beauty in all things.
* * * * *
There was the way that my husband Sylvain’s family, though he and I are separated, continued to include me in all of their group messaging, often sending me private links so that I might see all of the babies who were born into the clan this year, and the perfect faces of those grandchildren who are growing up far too fast, despite COVID.
Merci Melissa, Geneviève, Marie-Hélène, Pascale…
* * * * *
Finally, there were Simon, Jeremy and Christian.
After years working intermittently as an actor for the McGill Medical Simulation Centre, Christian has come to know medical, and specifically hospital culture as well as any physician, I think, which is why, in spite of the ban on being accompanied, he was able to obtain the authorization to stay by my side that very first, awful Thursday, watching over me like a hawk. Merci Chantal, merci Dr. Aubin.
And even when he was barred from seeing me once I’d been moved to D Pavilion, he made sure—with Simon’s collaboration on the home front—to send me, on two occasions, bags of supplies. Both he and Simon also included my laptop and two external hard drives filled with movies and TV series I love…
I felt so much less lonely. It was as though my sons were by my side.
And Jeremy, working from home, plied me with videos and photos of Penelope and Graeme…We had some of the sweetest phone conversations…
* * * * *
MONDAY, MAY 24TH 2021
“I awoke at dawn, still dark and shadowy, but the air alive with birdsong, so much of which I still have to identify;
and the shrill, metallic sizzling of squirrels–red I think–and lay there, deciding to stay awake to it all.
I moved my pillows in such a way that even though I was due for my next dose of meds, I felt no pain.
I watched dawn break, saw the sheets of sunlight spread out like a spotlight through the plein jours.
You want to scoop this peace up and hold it to your chest. You want to feel every breath you take in this moment.
Then, as the sun had risen and the animals quieted a bit, I closed my eyes and truly daydreamed.”
ART: Thomas Callendar Campbell Mackie, Southerland Dawn, (1886-1952)
June 24th, 2021
Lying in bed last night, waiting for sleep to come, I started listening to some of the voice recordings I made on my phone the morning of my surgery. They were all made at around 6 am, when I still thought I wouldn’t be wheeled to the operating room till the afternoon. In fact, they came to get me just an hour later.
In one of these, I simply name all of the people in my life who are dear to me, and tell them that I love them—in English and in French. I know there are names missing…but I feel certain that my love reached everyone I carry inside.
But the following recording, made on the 5th day of my hospitalization and fourth day of being physically cut off from everyone I love—in this brief moment, I grasped the light.
TRANSCRIPTION OF VOICE RECORDING 112, July 14th 2021, MADE AN HOUR BEFORE GOING IN TO SURGERY:
“Today is the day of my operation and for the second day in a row, I wake up at an hour that’s basically dawn, except that at home, at dawn, it’s the sounds of the birds that awaken me, but here, there are none of those noises: there’s the sort of strange, sticky, scratchy sound that the intravenous pump makes, and then there’s the ventilation which basically keeps the whole hospital in tiptop hygiene with great air […]
Why I’ve woken up at this time? Well, I guess it’s now programmed into me—I did the same yesterday morning.
Today is the day that I’ll be operated, and that has something to do with it, although I don’t feel nervous at all right now, it’s not about that…
[pause]
I’ve been sequestered from my whole family, from everything and everyone [since Thursday evening]. I was brought here to Pavilion D on the 15th floor, which I didn’t realize was a patient care floor. So I’ve been in this bed Thursday night, Friday, Saturday, Sunday,.
Today is Monday […] Dr. Richard is a very, very gifted surgeon and I give my life over to her once more and hope that she can do the very best for me, and…that should be my day. I don’t know when they’ll call me; I’m thinking the afternoon, but who knows…
And so that’s it. To everyone I love, if I go quite soon today, and then what comes after…I don’t know, I’m afraid to think…there have been a few disasters along the way in the last seven, eight months and it has changed a lot of things inside me…There is no silly optimism; there isn’t a sense of somehow being magically protected. There is the knowledge that I can take an awful lot of pain, and that pain, no matter how unbearable, never…never…has an impact on how much we love.
[Audibly crying]
…and who we love, and how deeply. No impact whatsoever. Even in the grips of the worst of it, I knew love, I felt loved, and I hoped to keep loving.” [still crying]
Drawing by: Chris Riddell, from the book by Michael Rosen, “Many Different Kinds of Love”
April 2021
Upon beginning the second year of the pandemic:
I am moved by the kindness of science
Of
The biologists
The epidemiologists
The virologists
The evolutionary biologists
The structural chemists
care physicians and nurses
The reassigned medical and para-medical professionals—psychiatrists, speech therapists, and others
respiratory therapists who helped us to breathe
though many of us never found our breath again
occupational and physiotherapists
who helped our bodies remember how to move
and taught us to move differently in the aftermath
The aids, attendants and orderlies
Who keep everything moving in hospitals
From the supply rooms and the laundry
To the pharmacy and radiology
Delivering bags of I.V. solutions and medications
Those who accepted working extra shifts
Over and over
Treating us with compassion
The caregivers who spoke to us and for us
Saw past the ventilators
Saw the person in the comatose body
All those whose work is to help lighten the load
Taking on the responsibility of our suffering
Our fear
Our dependency
Our frailty
Our mortality
Resting their hopes on our resilience.
You will have saved us
You are science’s kindest face
You are passionate, committed, diligent
You collaborate across continents
Single-minded
You are hope
You are the biggest kind of Love.
Drawing by Chris Riddell, from the book by Michael Rosen, Many Different Kinds of Love
Postscript
The gaps between the pieces I write grow longer. It’s not that I have less to say but more about how all of the threads of our lives during the pandemic have become intertwined.
I feel entangled in my cancer and the other, savage illness caused by the COVID-19 virus, that has changed the world and most lives in ways we’ll only be fully aware of when this crisis is over.
It isn’t always easy to figure out why we feel the way we feel.
If you had bumped into me two weeks ago, and had been able to see through the facade I was presenting to the people whose days I didn’t want to ruin, you would have understood immediately that I was fragile, and probably tired. You may even have perceived fear and discouragement. You would have been right.
Why this was so is both obvious and mystifying. Getting through winter, through the pandemic, treatment, and through the aftermath of the cornea transplant I underwent just before Christmas requires energy that I was running out of.
When this happens, the breach that is always there widens, and the worst thoughts you could have come out and make a mess inside you.
Whispering in my mind was a voice telling me that my cancer had probably started growing, I felt like those tumours were now expanding inside me. I know that eleven days after my last chemotherapy treatment, I still felt so tired…And, too, you have to live every moment you have that offers life and joy, but you also have to be ready for the day when the wheels fall off. I thought that day had come.
Still, you can’t live with a mind stuffed full of dread for too long. But where does the spark come from that leads to change? How does the light that casts a hopeful glow on everything around you appear? What is that mechanism all about?
I think it happens by accretion. Small, positive, good things become more visible. I think they may even come knocking. I’m still figuring that out.
What I know for sure is that through this bleak period, the people who love me kept loving me. I know that the phone calls I have with my mum–more frequently than ever before in my life–always make me feel better than before I call, and I’ve been making it a practice to call her more often because I think it does her good too. I know that my friend Louise C who is my partner in our daily blog,Aubade, continued to Message me every morning with a quote that matched her mood and her hopes–leaving it to me to post it along with evocative images. I know that my best friend Loulou called me regularly and we talked about our discouragement that a year into COVID, we still can’t hug our grandchildren, but also about simpler, everyday things…
And then, one day online, I connected with Charles, my brother-in-law who lives on the West Coast and has had a very tough year. He was, as he ALWAYS is, sending me messages full of kindness and intelligence, He is a man of many abilities and interests, and one of these is writing. And THAT’S when I had this flash of inspiration that led to what I’m now calling THE HAIKU EXPERIMENT.
I’ve tracked the genesis of The Haiku Experiment to February 24th (just a few weeks ago!), when I floated the idea to Charles and…well…he accepted! And that’s when the fun began. My old habit of finding images that matched some of the things I write (at REEF, at Aubade, and sometimes just on social media) is so ingrained that when Charles sent me his first haiku attempt, I matched it with a painting and then posted it. It got lots of online LIKES. And it was fun.
Soon, I was writing haiku, as was Charles, and Loulou (in French), and Hadi and Gail…And others were commenting and expressing delight and encouraging us to keep going! Charles was literally receiving requests! And then Patty asked if she could try, and yes was the answer and so she sent hers in as well. The rules are not true to Japanese haiku, and that’s okay. Five spoken syllables, then seven, then five again was enough of a challenge.
Yesterday, I spent part of my time with Hadi, who was once my French student, and who is now simply a friend. He is also brilliant, and, in his spare time, a visual artist. Turns out he’s also pretty good with the haiku form. He first sent me a longer poem written a few years ago, and then showed me how he could trim it to create a haiku. Back and forth we went, figuring out everything that had to be left behind by Japan’s verbal equivalent of bonsai. What was left on the page had to be beautiful. Hadi’s mother tongue is Farsi but he also speaks English, French and probably several more languages.
See what you think. Here is the original poem:
Today I saw a girl
Wearing the scent of flowers
Collecting flower pictures in her bag.
She stole the sunlight from trees
Took the colours from flowers
Absorbed it all Fall’s let her leave with souvenirs
And I let her go
Before the sunset.
And here is Hadi’s haiku:
Today I saw a girl
She stole the sunlight
Wearing the scent of flowers
Sunset let her go
ART: Hadi Nejad, “Roots of Setting Sun”.
Here is a sampling of what a handful of people created because it was fun; because of COVID; because it felt great.
Freedom
Swiftly glide on edge
Scarring the glassy surface
Freedom is the ice.
(By Charles H).
ART: Ice Skating on a Lake Patricia Hofmeester
Longevity
I ask myself now
How light should my footprints be?
Like breath on cold glass.
(by Michelle Payette-Daoust)
ART: Stock image
Each lighted snow flake
Revisits the halo
of Narnia’s lantern.
(By Gail R)
Photo by Gail R.
AUX ARBRES
Perles de pluie suspendues
Soleil asséchant
Les perles, évanouies!
(By Louise-Gabrielle)
Moose Creek
The just got it done
Stemmed the flow on Moose Creek
Working like beavers
(by Charles H,)
ART: “Spring Flood”, Mark Kremer
Spring Thaw
Dazzling bright sunshine
Daggers liquefy and fall
Winter’s rest ending.
(by Patricia B.)
There are dozens more that I could post, but I think I’ll sprinkle the rest of them throughout my posts from now on…as long as the supply lasts.
Do you begin to see what magic was working that pulled me out of myself and my fears?
And then Patricia sent me this haiku, written by her friend Jack, A very moving, personal poem:
JACK’S HAIKU
It was on this day
You were never to come home
I came home alone.
ART: “Solitude”, by Daler Usmonov
On Monday, March 8th, I was back at the CHUM for my biweekly visit with the oncologist and the usual pre-chemo blood tests. I also knew that I would be getting the result of my most recent CT-Scan. You know what I was thinking. How do you gird yourself for frightening news?
I’m so happy to say that my worrying and sadness were misplaced. The tumours, it appears, after more than two and a half years of treatment, are still shrinking. Everyone was smiling. A reprieve. Something to write home about.
Poem: THE HAIKU EXPERIMENT, by Michelle
The other day I decided
(it really happened that way)
To invite others
(friends and their friends)
To open a door they mostly keep locked
(sometimes it’s so small, they forget that it’s there)
To my surprise, many dared
Some with a whoosh!
Some with hinges that needed coaxing
And from all those doors swinging open
Words streamed outward
Like birds of a feather
Sunward
(though a few, carrying pain, chose the shelter of the clouds)
I had to look back through THIS IS THE MOMENT to see how long I’ve been away, and was shocked to see that I last wrote to you in November.
I’m so sorry about that.
Do you believe in jinxes? Yes, I’m serious. Do you believe that words uttered can have the effect of toppling one’s wild and precious life?
In my case, it’s about a happy, uplifting appointment at the CHUM I had in early December with Dr. Aubin and a resident who was attending her, and also with my beloved nurse, Chantal.
When December arrived, my body had reacted so favourably to the research protocol: I looked well. My weight was super stable. My bloodwork was almost always really good. In the examination room, we were all smiles. Enjoying this happy moment, Dr. Aubin turned to the resident who was with her that day and said:
“Mme Payette est une patiente qui va exceptionnellement bien .»
(translated : « Mrs. Payette is a patient who is doing exceptionally well.”).
Dr. Aubin had even convinced the sponsor of my clinical trial to preserve my status as a research patient, because my data was valuable as long as I stayed the course and received Folfox.
I smiled. It was one of those moments in a cancer patient’s life that’s like a cloudy sky opening up and revealing a blinding ray of sunlight.
I felt lucky. I felt unburdened for a few brief minutes. I felt…weightless and hopeful. I allowed myself to feel charmed. Blessed. And inside that ray of light, I even allowed myself to think: maybe I’m one of those people whose tumours just stop growing.
ART: Ellen Levinson, Orange Sunburst Forest Abstract
I carried that feeling around with me for a while. I shared it with my family, and I shared it with my mum, who, at 85, and trapped inside her house by COVID-19, was in need of good, happy news. I’m okay. All is well. The slightest of white lies from daughter to mother.
But it’s not good to get ahead of one’s self. I should have known better. I should have taken some positivity away from the doctor’s encouraging message, discreetly, and then made sure my feet were firmly on the ground before continuing treatment.
What concluding the infusions of Nivolumab has allowed me to do is learn from my body, and begin sorting through which medications were and/or continue to be responsible for certain side effects. For instance, I think I can confidently say that Nivolumab was responsible for the muscle weakness and joint pain that had been increasing for months, because since last August, these have subsided and I can move and squat and do physical work almost painlessly now.
Still, I should have known better than to escape into believing in magical outcomes, because the need to live outside of cancer, even briefly, left me vulnerable when, in sync with the pandemic, I was hit by unrelenting waves of side effects.
* * * * *
Throughout last fall, my eyesight worsened. Not only sunlight, but even lamplight burned my eyes. If I had sprouted fangs and begun hissing, I couldn’t have acted more vampiric. It was crippling. Concerned and cautious, Dr. Aubin requested an appointment for me at the ophthalmology clinic, my third since I became an oncology patient. It was booked for December 18th.
Meanwhile, a second problem had been building momentum: for weeks, I had been experiencing spasms in my right trapezoid muscle—a large muscle that starts at the neck, branches out to the shoulder blade and reaches down to the middle of the spine. The cramps had been worsening and were nearly constant.
On the 18th, when I was called to wait in the ophthalmology examination room, on a chair designed to keep you still and straight-backed while the doctor places a treelike apparatus of lenses, lights and supports in your face, my back spasms had become so fierce that it was as though I was being zapped by a taser over and over and over—as though electrified tentacles were firing into my back.
The resident doctor arrived (you always see the resident first), and spent a long while asking me questions while he blasted light into my yowling eyes (if eyes could yowl, that is). After a period of uncomfortable silence interrupted only by requests to “please try to keep your eye open” (futile), the resident physician said: “Mais Madame, vous avez un trou dans votre oeil!” (“But Madam, you have a hole in your eye!”).
Um…uh…oh…bbbb…but….
What on earth could I say? This didn’t sound very medical to me and I had no idea what he was expecting me to say…though the fact of my being there in that chair spoke for itself, I thought…
I realize now that what he had read in my file—something like: Patient complaining of photosensitivity in both eyes—didn’t prepare him for the gravity of my situation. After all, this had come up twice before in the first year and a half of treatment, and both times, I’d been sent home with a list of over-the-counter eye drops that I was told should do the trick of moisturizing my eyes. That information sat in my file, and no follow-up was ever booked by any of the ophthalmologists I saw.
Off he went to get the ophthalmological surgeon, Dr. Louis Racine (remember that name—he’s brilliant). When the latter entered the examination room, I was still seated in the dark, besieged by back spasms and slowly retreating into shock. He immediately set to work, and just as I was about to ask him something, he said (in French): “Madam, I’ll ask you not to talk. When I’m done I’ll answer every one of your questions, but for now, I’m trying to save your eye.”
GULP.
How can I explain what it was like, sitting there? When I left the house that morning, it was with the expectation that I probably had a blocked tear duct, caused by the construction going on at our house which had sprayed so much plaster dust everywhere. I thought this because my right eyelid had swollen a few days previously, and my eye was constantly leaking tears. I had been distracted by the back spasms that were getting worse.
And this same Thursday was also the day when Cindy, a beloved family friend, was moving in with us, into the addition the builders had just about completed. Both she and Simon quite literally had their hands full and in any case, because of the COVID lockdown, I was still not allowed to be accompanied to the CHUM.
Shortly after, Dr. Racine informed me that both of my corneas were in terrible shape, so dried out that the right one had perforated, and the left one was on the brink of sharing the same fate. I was dangerously close to becoming blind in at least one eye.
Faster than I was able to process, I found myself in a different room in the ground floor clinic, lying on a gurney. A different resident was attending Dr. Racine and it was clear by his hyper deferential manner, that Dr. Racine (though young!), had his respect and a lot of clout.
What was done to me that day was this:
As I lay there, fully conscious, afraid that my back spasms would make me move despite my best efforts to stay immobile, Dr. Racine cut through the surface of my cornea, saying “Ne bougez pas” (“Don’t move”)—all the while giving the play-by-play of his actions to his colleague—removing the useless tissue and closing the hole by gluing a temporary contact lens over it.
ART: “Breathe”, Sara Young
I’ve seen dogs and cats who are usually filled with kinetic energy go docile and still as stone when taken to the vet. I understand them. I have rarely felt so vulnerable. My situation unravelled so quickly, it was all I could do to keep myself together and not cry. I kept quiet. I made my life at that moment into the smallest, most stripped down existence possible.
And trust in this man who had inserted into my right eye a lens with a bright blue fake pupil that made me look like a cyborg. It was scratchy and irritating. He covered it with a protector and then we went back toward the examination room.
Minutes after, he sat at the computer saying (always in French): “No, not Saturday…Sunday? No…Okay Tuesday!”. Then he turned to me and said: “Next Tuesday, I’ve booked you for corneal transplant surgery. You’re going to be okay, you know.”
Or something like that. And then he put his hand on my shoulder and said: “With everything you’re going through, you could have done without this, couldn’t you?”
And instantly, I felt like a woman, like a person, and I was flooded with a sense of relief and gratitude.
The transplant was done as planned, on the following Tuesday, with my son Jeremy parked in the CHUM basement waiting for the call that would allow him to come and get me. I came so close to blindness.
* * * * *
Since then, I’ve been getting a big fat dose of what it’s like to live with a single functioning eye; how it throws off your ability to judge depth and distance. And I’ve discovered that there is a sympathetic link between our eyes, so that when one is burning and struggling to stay open, the other tends to do the same thing…
I’ve had my first Christmas baking experience with limited vision. I’ve become adept at getting 4-5 ophthalmic medications to drop, bullseye, right into the centre of my eyes (yes, BOTH eyes because my left cornea was just at the point of tearing, too).
Not long after, my back spasms reached a level of such intense pain that for most of January, I’ve been taking anti-inflammatories, more powerful muscle relaxants, short-term pain control to block the signal between the muscle and the brain (or it might become a permanent pain pathway), in addition to all of my eye meds.
The people at the pharmacy all know my name. I get great service.
* * * * *
What caused the destruction of my corneas?
It seems likely that it was a chemotherapy drug, because I had never had any such issues before, and they only appeared after treatment started.
I’m scared, because even as I try to do everything I can to help my eyes to heal, I am still ingesting the poisons that have damaged them. When I saw Dr. Racine this past Monday, he was disappointed in the slowness of my eye’s healing. I’m now wearing a contact lens over my right eye, in the hopes it will speed the healing of my cornea. Otherwise…Oh, never mind. You know enough.
And what of the muscle spasms?
Well, three days ago, I went back to the CHUM (the day after I saw Dr. Racine), but this time to Nuclear Medicine, on the 8th floor, for a bone scan. The entire procedure takes 4 hours.
Dr. Aubin should have the results when I see her next week.
* * * * *
So? Do you believe in jinxes?
I’m still inclined to say no, even though I am definitely NOT doing exceptionally well.
I have missed reading terribly (but recently, I’ve been able to). I have missed writing terribly (but today I’m diving back in with a vengeance). I miss seeing friends and family (even if only with one eye) terribly. But that’s COVID 19.
But I don’t think I’m jinxed. Not for a minute.
I feel so grateful to modern medicine and to the health care professionals who have steered me through so many dangers and threats.
I am grateful for my eyesight, fragile though it may be. I am grateful for Dr. Aubin, Chantal, Dr. Racine and all of the nurses who work on the chemotherapy floor.
I love my family, my relatives, my friends –near and far.
I LOVE THEM.
Maybe BREATHE, ACCEPT, BREATHE, ACCEPT, is the very best thing I can do.
Written between September 20th and September 28th, 2020
A small red plastic laundry basket has been sitting in the corner of the den for months. Simon brought it up from the basement during one of his valiant efforts to create and maintain order amongst all of the stored stuff down there.
The red basket was a holdover from moving day. It has long resisted being displaced again (I don’t blame it). I remember it from that day in early July 2018, because it’s one of the very last things we filled. I think that it was Vickie, my beloved daughter-in-law, whom we’d known only four months at that point, who loaded it up with some of the last objects taken from my dresser. She was exhausted, her head and hair slick with sweat (it was 34 Celsius that summer day), but she left nothing to chance. I love her for it.
Then it was plunked in the new basement. Waiting. Waiting. Have you noticed how, if objects stay long enough in one place, there’s that risk that they’ll simply meld into the background, put down permanent roots, become invisible? But not with someone like Simon, who, from the first week in his new house, vowed (I feel sure this is true) that he would not make the mistake of burying himself alive under the weight of STUFF, ever again (a sentiment I am completely on board with). EVER.
So, after at least 18 months of internal foot-tapping patience (with me), he brought the red basket up to the ground floor, into the room where we congregate at the end of the day to watch movies and videos and all the streaming rest.
“Tiens Maman,” he said, “you can look at this stuff and see what you want to keep.”
It wasn’t a big priority for me and I barely looked at it for weeks that became months. And then, just a few days ago, probably because this long-ish break from chemo I’m enjoying has given me more energy, I picked it up, settled it on the coffee table, and started emptying it out.
Really, to any eyes but mine, the red basket contained bric-a-brac as indistinct as any box of junk you’d find in the back room of a thrift shop. Most visible were a thick, white and purple plastic bag—the kind commonly given, not so long ago, to customers of small stores—its contents undisclosed; a slightly beat-up, transparent plastic Ferrero Rocher box filled with mystery items; a strange looking, brutalist mosaic like an undersized, square dinner plate, and a small, carved, gilded wooden box with the appliquéd image of a Madonna on it.
My relationship with objects has changed so much since my diagnosis. They’ve become supercharged with the weight of memory and of meaning. Having left so much behind, I’ve come to realize that many of the things that made it through my move have remained with me because I feel as though parting with them might cause a break in my timeline, like removing a piece from a carefully set up domino run. It’s as though what I’ve held on to will need to say what I will no longer be able to say when I’m gone. Or maybe it’s also, and more so, that they will simply act as voiceless vessels of my presence.
That sounds horribly self-absorbed, but standing where I am, I feel that I want to leave traces; that it will be far less cruel to do so than to be snuffed out in one all-consuming flash. Of course, there are my books. I know that many of them—especially those I read during the past two years, and those I made a fuss about while I was enjoying them—will do that job, because I think they DO contain something of me, of my spirit, of my love. I’ve begun writing my initials and the year, 2020, into those I’ve ordered and read recently, hoping that even that simple scribble will transmit a gentle pulse when it’s read, and maybe evoke an emotional memory other than “the year of the pandemic”. Also, I smile at the mental image of family members—my sons especially—and friends holding one of my books to their chest. I like to think that at that moment, a spark of me will be there with them.
But you see, the fact of my books isn’t painful because they’re there for anyone. Books are meant to survive us and to pass through many hands. And that’s why I’m rattled by the small red basket. On the recent afternoon when I decided to start emptying it, I could have settled anywhere, but I chose to stay in the den, which is more cut off from the rest of the house.
Insulated there (while Simon was busy teaching online), I sat on the couch and looked at it. It’s strange that such an assortment of mementos should have wound up in it, because the basket itself has meaning. I remember it and always will because when Christian was 6 months old or so, I used to sit him in it, with some toys, so that he could be with his big brothers (who were almost 9 years old by then), watching them and being part of things, without the fear that he would tip over and clunk his head. It was just the right size for the job. It was, in a sense, his safe perch.
Why did I put off looking through its contents for so long? The truth is that deep down, many of the objects it holds reach back into time and have a grip on my heart. It’s a basket full of junk and oddments that I cannot part with.
Digging into the dusty mound, I retrieved my Bombardier ID lanyard, which was my security pass, required for all of the contracts over several years that I worked teaching French at different Bombardier plants and offices, to craftsmen, technicians, administrators and brilliant engineers from all over the world. It’s a strange object not to want to part with, but there you have it. A piece of me will always be there, in the spartan basement conference rooms of the company’s many buildings. How many have emptied out since then? What’s left of that great aviation mecca? It was my one and only lanyard, and it must stand in for a decade of teaching in adult ed.
I found Christian’s first I.D. pass, given to him at the age of three, when he was registered at the YMCA to attend preschool at L’École les Trois Ours. I feel sure that I preserved this, held onto it, because it was also the year that Sylvain was in England from November to the following April. Christian had just turned three when his dad left. I remember how anxious Christian was the first few weeks he was at the preschool. It was also a very different experience for me, because, having only raised twins up to then, Christian’s aloneness, in all its ramifications, became clear to me.
I then found my Concordia student ID card. My years as an undergrad were among the happiest of my life. It was a time when I felt alive and hopeful about the future. It was a time when I had the most freedom vs the least responsibility I would ever have again, and I knew it. Of all of the souvenirs that survived the passing of decades, this small card is one of the most unlikely.
Next, I dug out the mosaic. A sad and delightful thing, really, that Christian made while in grade school and brought home, dutifully, knowing that it was like most of the rest of the arts and crafts he produced in class—pretty awful (I write this with a smile and the most tender pang of empathy) . Christian, my youngest son, the artistic actor-writer, had a talent—discernable from the age of four—for creating square igloos, brutalist crafts, and a whole gallery of objects only a mother could love. And so, the mosaic is here to stay. I’ll leave its fate in his hands.
And then I pulled out the gilded wooden box –from one of my mum’s two sisters (why can’t I remember which one?)—that I secreted away in a sock drawer and considered my most precious possession for years. I treasured it as though it had been dug out of an archeological site. Perhaps it was the way it was given to me: by a person who would not normally have done such a thing; in a way that made me feel that I had been entrusted. Only the smallest, most precious treasures of mine ever saw its wooden insides.
Its last and most important prize were the Connemara stone prayer beads, a string of cubic green stones beautifully held together by a chain running along them like a spinal cord, and given to me by Mr. Sweeney, my high school English teacher, who also gave one to my sister Marie. It’s a beautiful piece. I spoke of it to my sister today on Facebook, to confirm a few details, and that she had one too, and she answered: “Yes. Either in my jewelry box […] or souvenir box. I think that’s where they are. Green. You make me want to check.”
She found it. She had even preserved the original modus operandi it had come with, which explained:
AN PAIDRIN BEAG
(The little rosary)
This is a replica of the single-decade Rosary used in Ireland in the Penal days.
METHOD OF SAYING
Place the ring on the thumb and commence the recitation of the Rosary in the normal way.
On completing the first decade move ring to first finger and so on for each decade.
Made in the Republic of Ireland.
We’ve held onto our Paidrin Beags for 45 years, and in spite of the fact that I no longer consider myself to be Roman Catholic, I have always felt a spiritual energy when I hold it in my hand. So much so that I often reached for it, in the dark, in the dresser drawer next to my bed, and pushed my thumb through the loop and held the chain of stone cubes tightly in my hand. To calm me. To connect me to the incomprehensible vastness, and to the source(s) of goodness, love and belonging that you might call God, or nothing at all, though I believe that any object that allows one to focus one’s most true and loving intentions is serving a spiritual purpose—even if it’s found in a tourist trap.
The next object I pulled out of the red basket was a framed reproduction of an adult hand supporting a tiny baby in its palm, next to which hovers a protective right hand…
My Mum gave it to me in January 1990, saying that it had been amongst my father’s possessions. She gave it to me when my son Gabriel was stillborn at 28 weeks, just a few seasons after my father’s death. It’s the only representation of my third son that I have. And it’s a repository for the deepest sadness I’ve ever known.
* * *
There are a few things that were tossed into the red basket on moving day that were just junk and will not last much longer here, but a shiver of relief ran through me when I retrieved the dark brown plastic wallet insert that I carried with me from grade school age, and that contained photos of my friends: strips taken in the photo booths that were such a fixture in shopping malls when I was growing up, and other such head shots—thumbprint size. This is my longest held treasure. I had lost track of where it was…hadn’t looked in the red basket since I arrived here, in my new home, in my new life.
Sitting in the den, I unfolded it. It has always felt talismanic. It opened in a downward flutter aided by gravity, unraveling one plastic compartment after another, photo after photo…And, oh! all those faces of my childhood and adolescence!
Photo booths made it so easy, even for preteens, to preserve moments in time. Many of these young faces were the most important of my youth, and tied to each of them are so many stories: of the terrible and awkward ways we failed each other and of the trusting, naïve and intimate ways we forged friendships.
The two best friends I ever had, right into early adulthood, Lesley-Ann and Laurent, are there. I could write a whole book about them, I think. They were buoys at times in my life when I might have otherwise drowned. Lesley-Ann was lost to me through circumstance, and the hole she left behind is still here, inside me. I had forgotten these two shots of her I had; I could barely breathe when I looked at them. Lesley-Ann. I missed her so much. But I have reconnected with Laurent since our high school days, and that complicité, that unique closeness that was always ours, is still there.
I see, now, that in my youth, they are the only people I allowed to truly know me. I believe, now, that that made me a better person. When I think of them, I think of how much we laughed together.
I don’t know that I’ll be able to throw out any of these mementos.
It’s not as though I expect my children to hold onto any of them. I imagine they may spend some time just looking at them after I’m gone, but these things have no resonance for them other than that they were mine. They are just stuff. They do not carry, for them, the multitudes that they carry for me. And so be it.
A good friend of mine recently told me that, upon her 70th birthday, a close friend of hers had started sending her most beloved CDs to the people she knew would enjoy them—tokens of precious bonds. In a world that includes Spotify and the like, it’s a sweet anachronism to do such a thing. Inspired by this nostalgic act of kindness, my friend has begun delivering (well, at least pre-COVID) and mailing carefully chosen books from her large inventory, one or several at a time, to the humans who people her world and her great big heart. She has even gifted several of them to me.
I know that we are not like birds, most of whom spend their lives in flight, moving back and forth between promising habitats, stopping for periods just long enough to build their nests, have their offspring and then move on, travelling light; holding onto nothing but the ability to navigate in the open sky.
But even the most nomadic among us, the Pico Iyers of the world, do, eventually, find it necessary to stop and put down fledgling roots somewhere; and do possess treasures that we bring along to the places where we choose to live, because they remind us who we are, and who we’ve loved and continue to love.
I look out at the garden this morning.
It’s late August, the tomato plants
are lush giants
and all of the other fruits
and vegetables around them
spread up,
spread out, jungle-like,
ready to claim the sun. **
Instead, today,
the rain pours noisily
heavily—
in lashes—
saturating the green
and the earth and the air
surrounding the garden which
will soon give up
the last of its fruit (we covet)
left bare when we pick them all—
greedily
(having shared with the furry scavengers).
I know the leaves will one day
yellow, wrinkle, die.
The last of the squash and tomatoes will
shrivel and discolour—
as we all do.
It is our shared nature.
But then I think—
the perennials of the garden
have their deep roots
and so, live to bloom
in another season.
I look down at my feet and think—
I have no such roots.
And my seasons
are running out.
Then, the faces of my sons bloom,
unseen by any but me—
conjured by my mind and
as real as this computer screen.
They’ve come to remind me
that my children live—
and their children will live
as long as gardens grow
and roots find entanglement—
in this life.
August 29th, 2020
Hudson, QC
I went to sleep last night having read about the death ofChadwick Bosemanfrom cancer and woke this morning to learn that it was colorectal cancer that killed him at 43.
I learned from this piece, that he had been diagnosed in 2016 with Stage 3 cancer, which then progressed. And so, I realized that he had made almost every one of the great movies that caused his career to skyrocket and brought him fame and stardom, while sick–while undergoing chemo and radiation therapy.
This is inconceivable to me…How strong must he have been…It hurts to think about what he put himself through.
And it fills me with compassionate sorrow, that this man reached the apex of his life as an artist knowing he was dying. That both journeys coincided.
I understand that he walked every step of the way knowing what it all meant. How important some of it was, and how insignificant other parts were…
Simon has told me several times before that people of African descent have a genetic predisposition to colorectal cancer, and I write this because going for a routine colonoscopy should be top of the list for so many beautiful humans I love…
And so I woke up this morning and find myself crying for a man I never knew or even met…but who brought dignity and his singular, powerful artistic vision to the world.
“The role of the artist is exactly the same as the role of the lover. If I love you, I have to make you conscious of the things you don’t see.” ― James Baldwin;
While Simon has turned toward his garden to immerse himself, elbow deep, in the earth and what grows there, we have both continued to raise our gazes to the sky and the trees—the poplars and maples, and the pines, so many of them, their towering, ramrod-straight trunks pockmarked by all of the lost branches under their umbrella-top canopies, marking the borders of our yard which is forested in a very Hudson-like way.
Cooper’s Hawk, Quebec
Last week, a hawk flew in from somewhere beyond sight, then settled in the grass at the side of the house to pluck the feathers from the avian victim it was perched upon. All we had heard was a piercing cry. Was it a robin? Or an immature bird plucked from one amongst the network of hidden nests we know to be there, invisible recipients of our love and concern.
With its wobbly, featherless prey in its talons, the hawk flew up and away, leaving behind a sad circle of mocha-coloured feathers in the grass. The alarmed birds settled down. A small creature had just lost its life.
A few days later, with Simon and I once again outside despite the swampy air and energy-leaching heat, and only the odd trill of a cardinal or robin floating in the dense atmosphere, a hawk—the same hawk?—swooped silently onto a branch of our big maple tree (it must have been the same raptor, hoping for easy pickings once again). I spotted it right away, of course, because it’s such a gorgeous creature: swift, silent, fierce, deadly.
This time, immediately, all hell broke loose in the pines. Birds—dozens and dozens!—had come alive, still invisible to us, shrieking and flapping their wings. The pine branches at the back of the yard shook and shivered. The grackles, especially, were having none of it. They shrieked and shrieked: Alert! Alert! Danger!, and where there had been quiet, there was suddenly pandemonium; a staccato mix of clashing screeches and a squawking choir…Alert! Danger! The grackles leading the lot, furious or terrified, I’m not sure, but holding their ground like they were firing AK-47’s.
Then, from the dark pines, a dotted black cloud of birds swirled up among the tree tops, then swept back down like a squadron to the place where the hawk must be—harassing, harrowing and bravely bullying the intruder until it finally flew off in search of an easier snack.
It was almost instantaneous: calm returned.
Stillness.
The grackles disappeared as if by magic. Invisible and now, silent. A robin sang. A few birds followed suit. A switch had flipped. But our hearts were still thumping. The decibels still echoing in the air.
We witnessed strength in numbers.
Courage is contagious.
* * * *
ENRAPTURED BY WILD TURKEYS
Since the end of June, Simon and I have been enchanted by the arrival of a new family in our yard: a wild turkey hen and her six chicks (also known as poults).
She showed up one day, lovely with her cream and coffee-coloured plumage and deliberate, regal walk (she is so different, this female, from the flocks of black-feathered, pink-headed wild gobblers that Christian and I spotted roaming like a street gang, just around the corner, a few summers ago).
She seemed so relaxed, adjusting her pace to the stumbling slowness of her chicks. That first time, she stayed on the periphery of our open yard, her bobbing, fuzzy contingent behind her.
She returned again, moving through the backyard. Her chicks were still all there—1,2,3,4,5,6, and growing. Like small, downy footballs. Apprehensive, I counted them several times. This hen has such a large charge. We stayed clear and made ourselves discreet, wanting her to feel safe and welcome and free to meander, plucking whatever they found from the freshly mowed grass.
Not long after, on a day when I was away, she returned with her brood. Standing at the kitchen sink, Simon spotted her just a few yards away on the patio, near our large deck. He grabbed his phone, and brilliantly captured Mama Hen become more daring, hopping right up onto the railing of our deck to sun herself, stretching out her wings, fanning her tail, and inviting her chicks to do the same (she clearly wants them as close to her as possible at all times).
They have been so lovely to watch and it pleases me that Mama Hen subverted my expectations by being serene in her maternal vigilance and quite trusting of us (we have tried never to intrude).
Our quiet vigilance was rewarded recently when we witnessed the most beautiful moment yet.
Wild turkey hen with her poults
In the early evening, with supper finished, we were sitting in the den watching Jurassic Park (a strange kind of coincidence when you think that birds are the living creatures that are the most closely related to dinosaurs), when I noticed movement in the backyard trees. Brownish birds with tails that showed white tips, fluttering from ground to tree branch very tentatively. Something pinged inside my head and I thought : Those aren’t robins, they’re too big…So I got up to look and realized right away that the turkey chicks were back, and flying, or more precisely, with their mama’s encouragement they were fluttering their way up, a couple of branches at a time, one after the other, as soon as she showed them the way.
Clearly, they’ve been practicing Up! went one, then Up! went the next and so on, left, then right, branch above branch, till they were about two thirds of the way up the tree where the foliage is thinner, so we could see them clearly (and she could see danger coming).
The sun was setting—it was almost 8:30 I think. And then, to our rapture, they aligned themselves, all seven, along the same branch, three to one side of their mama and three on the other. And she spread her wings as the light became scarce, and wrapped them around her babies, who fidgeted and fussed a tiny bit, as we kept our secret watch.
When Simon and I each went to our rooms to read, we checked in on them. They hadn’t moved. I was up early the next morning, around 5 o’clock, and they were still there. But by the time I showered and dressed and sat down to eat something, and looked for them in the half light, they were gone. I’ve since read that wild turkeys see poorly in low light, and though they fly quite well at low altitude, they are more at ease up in the trees.
Simon found a giant single feather on the ground that morning.
We were both so moved by this. It was such a privilege to witness it. We didn’t try to photograph them up there, but that same morning, online, I found two photos that are almost exactly how they looked under their mother’s wings.
Since then, they have returned for several afternoon browses through the yard, and two more nights in our maple tree hotel.
Wild turkey hen with her chicks
It feels important to me that I should share these experiences with you. It’s because of the times, yes: these days saturated with thoughts of COVID-19 and its traces on every surface of the physical world and the hold it has on how we think and feel about life in the present and future and how these thoughts have, in fact, been completely reconfigured by the implications of the pandemic. But it’s also about what happened, inside this tumour-harbouring chest of mine, when the birds, large and small—the beautiful, winged creatures whose song and chatter is perhaps the most reassuring acoustic backdrop of life—flew right down to the ground nearby and allowed me a glimpse of existence at its most stark and essential.
What happened when I saw the mother turkey and her trail of babies in this “suburban” space is that my pulse quickened, my heart started pounding and I couldn’t tear my eyes away from them. And that first evening, when I witnessed the large mother turkey marshalling all of her chicks fifty-plus feet up into a tree, I felt moved, and so did Simon. And we stayed there, at the window, mesmerized, enchanted, and feeling such joy that we had been graced by this example of dutiful motherhood, and the imperatives of Nature. I found myself cheering for her and her chicks: Go, go, up! Up!, and feeling giddy with the wonder of it all, doing head counts of the chicks every time they appeared, relieved and very grateful that she has kept them all safe.
I’m so lucky to be reminded of the life that finds its way into our world no matter what. Our garden grows lush and tall. The animals follow the rhythms of the seasons. They are agents of life. We are connected.
* * *
August 4th, 2020
In the human world—the one that is so fraught at present and so saturated with tension, fear, and apprehension—there are people who, I believe, have a talent for sensing and cultivating connection, as though they’ve always understood, in their very bones, that it’s the only meaningful way to live.
On the road I’ve been walking since my cancer diagnosis, I’ve learned to recognize how many such people were already part of my life, but I’ve also met so many more. And I think that it can’t be a coincidence.
The first couple of times I went to the CHUM, it was to see the surgeon who would decide what to do with my colorectal tumour, and if I’m remembering correctly, we arrived at the building where her office is from the street. I think that’s also the same way we came to see her the day my diagnosis of metastatic cancer was confirmed.
But since I was placed into the care of the oncology team, who work in Pavillon C, and my two years of treatment began, I have only ever entered the CHUM from metro level, which consists of a series of long, underground tunnels that eventually lead to the entrances of both the Centre de Recherche du CHUM (pavilion R) and the rest of the hospital centre, including Building C.
Towards the CHUM, from the metro (1)
First tunnel towards the CHUM.(2)
Entering second tunnel towards the CHUM
Heading toward Constantin
Constantin Ntimamosi awaits
Last part of the tunnel toward the interior of the CHUM
It’s precisely there, at the end of the second to last hall, at the confluence of streaming medical professionals, hospital workers, researchers, patients and family members, that I first heard the voice that rises above it all.
It’s the voice of a man speaking French, but not Québécois. While his French is surely that of an educated, eloquent man, my ears made out immediately that his accent is from a former French-speaking colony, containing traces of other languages. His speech rose above the chatter of people and their footfalls. It rose above the sounds of the ventilation systems and echoes in an almost constant verbal flow. When I got close enough, I saw that this man, dressed in a security guard’s uniform, wearing a cap and standing between the entrances to pavilion R to the right and the rest of the CHUM to the left, was visibly middle-aged, straight and fit. But unlike anyone I have ever met, anywhere, he greeted every single person who streamed past him with a thought, a phrase, an intention for the day or words of encouragement, and he did it all with a smile.
Constantin Ntimamosi
He still does. But I remember how, especially during those first weeks of treatment, it is he who set the tone for what I have come to associate with the CHUM.
«Bienvenue et bonne journée! » he says to some.
[“Welcome and have a good day !”]
« Gardez votre joie de vivre ! » he calls to others.
[“Keep you zest for life !”]
“Gardez votre bonne humeur!” [“Keep your spirits up ! ”]
« Chaque jour est une vie ! » [“Every day is a lifetime!”]
« Vous avez droit à 200 mg de bonheur gratuitement ! » [“You’re entitled to 200mg of complimentary happiness!”]
He always spoke to me and of course, from the very first moment, I smiled at him, said thank you, waved, and, magically, carried that smile on my lips all the way through the last bit of the tunnel and into my day at the hospital. And felt hopeful. These days, he tells me: “Restez positive!” (Stay positive!)
I’ve since learned that his name is Constantin Ntimamosi, that he has been working as a security guard at the CHUM for 9 years, and that in his previous life, he was a Congolese civil servant. What happened to this man? What forced him out of his native land (because I have no doubt that this is precisely what happened). How difficult must it be for him to stand in a long, sterile corridor for hours every day and greet the hundreds of people who walk past him?
In an interview he gave some time ago that’s available on YouTube, he says of his job that it’s:
“[…] Une bonne occasion de rentrer en contact avec le monde. »
Translation :
“[…] A good opportunity to make contact with folks.”
Constantin Ntimamosi embodies in the most dignified way, a deep understanding that the meaning of life is found in human connection, and so, he explains:
“ […] Moi,je vise la communication parce que c’est ce qui me rapproche le plus des gens que je côtoie tout le temps. »
Translation :
“Me, I strive to communicate, because it’s what allows me to get closest to the people I rub shoulders with every day.”
Constantin Ntimamosi being interviewed
There comes a point in the interview when, looking out at the tunnel that is his workplace, he reveals something deeper inside himself, saying:
« […] C’est rien qu’un tunnel!
C’est un tunnel !
Quand je ne suis pas là, ce n’est qu’un tunnel comme tous les tunnels […]
Tu vois, il faut donner de la vie à toutes choses. »
Translation :
“It’s just a tunnel !
It’s a tunnel !
When I’m not here, it’s just a tunnel like any other […]
You see, you have to make all things come alive.”
Since the beginning of the pandemic, the movement of men, women and children in the tunnel has weakened to a trickle. Constantin has so few people to greet–his days must be long and arid.
I discovered, on the few days when he wasn’t there to greet me when I arrived at the CHUM, that he is, truly, a bringer of life into his place of work. Without him, there’s a forlorn feeling in the passageway. It’s heartbeat is gone. I only learned of the video this year, but everything Constantin reveals in it is true to what I’ve felt emanating from him from the moment I first heard him.
« ‘Chaque jour est une vie’ », he explains to his interviewer. « J’ai entendu cette phrase à la radio quand j’étais petit. C’est une phrase capitale dans ma vie, car la vie est courte. On ne sait jamais quand on sera patient à notre tour.
Translation:
“Every day is a lifetime. I heard this phrase on the radio when I was a child. It’s a crucial phrase in my life, because life is short. We never know when our turn to be a patient will come.”
“ Le monde me dit: “Mais vraiment, même si on n’a pas de soleil, mais au moins tu es là.
[émotion dans son visage]. Si quelqu’un me dit ça, qu’est-ce que je peux vraiment…Ça, c’est vraiment incroyable. »
Translation :
“People tell me : “ But really, even if there’s no sun, well, at least you’re here.” [he is visibly moved] If someone says that to me, what can I do…It’s truly unbelievable.”
You may not be surprised to learn that the title of the CHUM video is:
Germaine Richier Le Coureur [The Runner]August 22nd , 2020 will mark the second anniversary of the beginning of my cancer treatment. I will have made it through roughly forty-seven chemotherapy treatments. TWO YEARS.
Early on in my journey at the CHUM, my sister-in-law Lucie, the radiologist, said to me: “You know, Michelle, this is a triathlon you’re beginning. A triathlon.”
At the time, I understood from her words that what I was undertaking would require stamina, resilience, mental toughness and grit.
The thing about triathlons though, is that they end.
I realize now that my mind has always been flirting with the notion of my “life-in-treatment” as a finite thing. Very subtly, I’ve been looking toward August 22nd 2020 on the calendar and 1. hoping to still be alive, which began to seem more and more promising, and 2. looking forward to a time when my eyes would regain their ability to see clearly, and also not burn like a vampire’s in the sunlight; to a time when my joints and muscles wouldn’t ache, and going for walks and doing yoga and bending in a deep squat to lift something would feel good; and…well, you see where this is going. I imagined the possibility of reclaiming something of my life before my diagnosis. My own magical thinking.
I imagined “life-after-treatment” as something of indefinite length of course. I have no illusions about longevity. How long I might live in some kind of stasis with cancer is something I’m happy to envision in vague terms. But there was this concept of AFTER. I did think, though, that during the time AFTER chemo, I would go in regularly to the CHUM, but less often. I thought I might get several months, 2-3-4…(you get greedy for the freedom of escape from the treatment schedule), and would get regular CT-Scans to check my tumours, and then, maybe 3-4 times a year, maybe a bit more often, I would get blasted with more chemotherapy, just to keep the disease in check…until the wheels fell off and LINES OF ATTACK #2, #3… were required, or I simply decided I was ready to let go of life.
I hoped for this, and I don’t think it was foolish or weak. It seemed necessary. It’s too much, right out of the gate, to take on chemo-for-as-long-as-I-live, which translates into the equation:
LIFE= CHEMOTHERAPY
(Meaning: there is no life outside of chemo)
The wake-up call came about a month ago, when I asked my oncologist (we meet every two weeks) what would happen after August 22nd, and the answer was, basically, we will continue with treatment. My research team was able to convince my pharmaceutical sponsor to preserve my status as a research patient and continue collecting my data (which I find very important for the progress of medical science and meaningful for all those cancer patients who will experience something similar in the future) and monitoring me. But on August 22nd, I will have reached the end of immunotherapy, and will then rely on the second part of my chemo, (the standard Folfox protocol).
What the medical professionals who take care of me want is for me to live as long as possible, as normally as possible. They speak of quality of life and make me fill out questionnaires several times a month (I could recite their contents with my eyes closed) to check that it hasn’t slid to the point where I’m becoming depressed, because they’re convinced that if this is the life they have to offer me, then it should be as good as possible. And I love them for it. They have been extraordinary. They have been KIND.
But this “not a true ending” end of my original clinical trial agreement (signed, sealed and delivered two years ago) isn’t what I needed to hear.
Since then, I’ve been struggling with a weariness that won’t leave me. What kind of a pep talk can I give myself? It’s hard not to drift into periods of sadness. It’s natural to flirt with the idea of escaping from a dark, difficult place. I’m being asked to make a leap of faith, to grab onto the idea, the possibility of a future that’s worth suffering for. For the past two years, I’ve been fixated on the single purpose of getting through the treatments I agreed to, with the glimmer of a hope that it might just lead to…an impossibly optimistic outcome. A magical reprieve. All the while knowing exactly what my situation is.
Leap of Faith
Of course, the Cancérologie team at the CHUM know what they’re doing: they’re brilliantly competent. They excel and they’re compassionate. And they’ve seen hundreds, likely thousands of patients all told, and guided the playing out of more treatments, cures and deaths than I want to think about. And so, when I sit in front of Dr. Aubin (or one of her colleagues), I know that there’s so much more going on inside her head than what she is revealing to me, and that her mind contains myriad maps of possible and probable outcomes for me (and all of her patients); that she is versed in epidemiology and pharmacology and…honestly, I don’t want to know what she knows: the statistics, the future plans of attack they may yet prescribe for me, and all of the nasty ways my tumours could develop that will eventually kill me.
Just this past Tuesday, as she was running the usual list of questions by me (on the phone, to protect us both from COVID-19), I mentioned to Chantal, my extraordinary nurse, that I have recently experienced mild vertigo when I’m lying in bed and turn to the right—just the briefest sensation of plunging, and that when I get up from bed, I always pause before standing, because it takes a few seconds for me to feel that I have my balance. After checking with Dr. Aubin, Chantal phoned me back to tell me that Dr. Aubin wants to know if this persists, as it could be an early symptom of vestibulitis, an inner ear disorder that might be caused by the immunotherapy drugs.
I’m not worried about this, so what I said to Chantal was: “Well, I only have three more immunotherapy treatments left, so it isn’t a big deal.”
To my surprise, she responded: “No. no. Even after you stop receiving them, the effects of immunotherapy drugs is very long lasting.”
VERY LONG LASTING.
Most of the symptoms of Nivolumab’s side effects are associated with inflammation in the body: colitis (bowels), nephritis (kidneys), hepatitis (liver), uveitis (eyes), and so in. A lovely man I’ve met at the CHUM, who received immune therapy and had such a horrific time with those kinds of side effects that he had to stop treatment with those drugs, said to me recently: “If it ends with “ITIS”, I’ve had it!”.
VERY LONG LASTING.
Words to suggest a seductive double-edged sword. From what I can tell—it’s hard to sort out and attribute chemo side effects to one drug or another because sometimes they present similar symptoms—the joint pain (arthrosis) and muscle stiffness and spasms that wear me down could be a combined effect of two different drugs, or it could be just the Nivolumab. So, when I hear the words VERY LONG LASTING, I associate it with hours, days, months and years ofpain,time and life!
Do my oncology team mean that I have a good chance of living with this pain a long time?
It’s a question I’m afraid to ask. Sometimes, “maybe” is the easier thought to live with.
Bela Uitz Woman with Hands Crossed and Eyes Closed
* * *
TRANSCRIPTION OF VOICE MEMOS, Evening of July 8th 2020
The thoughts I wrestle with during moments of low energy or simply, nighttime solitude.
“There was a time when, in a quiet moment, I used to spread my hands over my chest and abdomen: left hand above right, fingers splayed to cover as much of my torso and belly as possible, my left thumb up beneath my throat and left pinky connecting with the thumb of my right hand positioned beneath it and angled so that my right hand partially covered my liver and a part of my bowels, which, now that I think of it, is a self-caress that must look a little like the map of the Americas. I was trying to touch the zones where I have cancer, trying to send good energy to those spots where I have tumours, and maybe heal them a little.
But I don’t feel that way anymore…I don’t feel that my body has done anything wrong or that there’s any specific site anymore. I just feel—all of me feels like I’m at the end of life, like it isn’t a body that’s useful for any kind of physical work, and it isn’t a body that’s useful for being fit; and it’s not a body that’s useful for being in love and sharing itself.
I make an effort to fix myself up, to put blush on my cheeks and a bit of eyeliner, and try to wear clothes with bright colours that make me look vital, because the thought of looking as sick as maybe I am, or maybe I’m about to become, and then having that reflected in the faces of all the people around me—strangers in the metro or the train, or the patients up on the 14th or 15th floors of Cancérologie—I think when that happens, I’ll be done.
When I’m up on the 14th and 15th floors and I’m feeling and thinking this way, I remind myself that the people around me probably feel similarly. When we look out at the world, we don’t want to see our cancer reflected back at us with looks of sad sympathy or any kind of morbid curiosity or have someone staring back at us, looking for the signs that maybe we’re very sick.
But none of us are allowed to be accompanied since the COVID lockdown, so there’s no possibility of escaping what we know immediately about each other. What’s left to guess about is the type and stage of each other’s cancer. The best way to diffuse that on the 14th and 15th floors is to SMILE at everyone: Bonjour, bonjour…and offer that warmth. It’s just a smile that says: “I’m human and you’re human and I hope your day goes well. And it isn’t about anything else—we know why we’re there anyway…
But with COVID, we’re all masked and all we have is our eyes, and my eyes have almost no eyebrows and very few lashes and it’s not a lot to work with, and I don’t know if they can see my smile. And that disturbs me. “
At the CHUM this week for chemotherapy
* * *
July 15th, 2020
When I’m on the 14th or 15th floors, I’m immersed in the world of cancer. Most of the patients around me are middle-aged and older. Thank goodness. Thank biology. When I see someone younger than us, someone who hasn’t even reached forty, it hurts. Something contracts inside me. I think: Leukemia? Testicular cancer? Lymphoma? I see my sons, my daughters-in-law.
And there are also those patients who have reached the end of the road. They are frail beyond description. Their faces are often grim. Grim is the mask of relentless suffering. They require canes or wheel chairs to get around. They have that horrible grey-yellow complexion that signals so many organ/system failures in the body…
They have wasted away. Many of them are afflicted with cachexia. Many can only lose weight now. Since my journey started, I’ve come face to face with a few emaciated fellow patients; two men in particular. Their hawkish faces were so similar; they wore the same mask-like rictus. The only feature that seemed fully alive was their eyes, which were as active as a raptor’s. The second man I saw last winter and spring on the 15th floor, where he waited to receive chemo. His body was lost inside his clothing. I couldn’t help wondering: Why is he here? What is the point of torturing himself like this? Can he not see that there’s no point to chemo? Why not just allow himself to ease into these last days of his life?
I guess he isn’t ready yet. Maybe he lives alone and coming to the CHUM has become the bedrock of his life. Maybe he’s terrified of dying. Maybe he has died—I haven’t seen him for several weeks.
Robert Mapplethorpe Self Portrait
The first gentleman is someone I saw right through the first year of my treatment. His voice was a broken, crackling drone because his throat had been devastated by radiation therapy. He was dying of thyroid cancer. His face was so much like the other man’s—same colour, same starvation-thin appearance. It was a hatchet face with oversized eyes. You looked at him, and you immediately looked away, his glare was so fierce. And then, one day, when we were both standing in line to register for our bloodwork, our eyes met and I took a risk and smiled at him, and said “Bonjour”, and his face lit up and produced a smile, and he quickly answered Bonjour!
And from his shrunken, rigid face spilled out who he really was. Just a man, a good man even, who was approaching the end of his life. And it was hard.
No matter how long I live, he is one of the people I will never forget.
I love those who can smile in trouble, who can gather strength from distress.” –Leonardo da Vinci
“Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell.” -Edna St. Vincent Millay
I lost someone on May 29th 2020.
I lost a friend I never saw in person—only in photos.
I lost a close friend whose physical voice I heard on a single occasion, when she activated the Voice Call function while we were using Facebook Messenger. We had been close for about fourteen months when she did this.
You get used to a person when you rely on messaging online. You think of their distinctive way of messaging—the grammar and rhythms of it—as them. And then you hear their actual voice, those vibrations from their own vocal folds, and it’s like someone pressed a high-powered “refresh” button. Suddenly, there is more of everything: more of their distinctiveness; a sense of their age; of their cultural background; their temperament. They are there—incarnate.
And so we talked a while longer, getting used to the surprise of this experience. She did sound a lot like I thought she might, in the sense that her voice betrayed her age a little—or maybe it was just her polite, slight formality. She was surprised that I sounded as young as I did (she was 74, the age difference between us is thirteen years; we might have sounded more alike but I just have a higher voice). We never repeated the experiment.
Gwenyth
Her name was Gwenyth, a name that sounds Welsh to me (well, maybe more so if the e and y switched places). In Welsh (I just looked it up), “Gwen” means: white, bright, fair, pure, blessed, holy”. I’ve always been swayed by the meaning of names. I was, after all, named after an archangel.
She wasn’t Welsh, though. She was born and grew up in New Zealand, but she lived more than half her life in Sweden. She married several times and had a bunch of daughters. Her third and last husband—who has outlived her though he is eleven years her senior— is the one she spoke to me about. The one who mattered. She called him her “safe harbour”.
How did Gwenyth become my friend? We found each other through Facebook, at Michelle’s Blog Page; or more precisely, at my THIS IS THE MOMENTseries link there, that I began very soon after my cancer diagnosis. But…the odds against such a bond ever forming between us are incalculable. How could a woman sitting in front of her computer in southern Sweden have stumbled upon the unadvertised, inconspicuous blog of a woman living on the outskirts of Montreal ? I don’t know, and I never thought to ask Gwenyth. After reading my post titled EXPANDING CIRCLES which appeared on January 5th 2019, Gwenyth posted this comment:
January 13th 2019
“Hi!
I found your blog today. Thank you for sharing your experience. I too have agreed to wander down the chemotherapy road. I want to be well informed about what is coming and your blog contains valuable information. It is quite frightening but other people have come through it and I will do my best to do it as well as I can. But at the same time, I have to try to live in the present as well as I can. Your blog provides information and experience that I feel will be useful as I wander down this scary path.
It is just three months since I found out that I had cancer. I had an open Right Hemicolectomy eight weeks ago and my first cycle of FOLFOX adjuvant chemo on Monday 7th January 2019. On Friday this week I also got my port-a-cath installed. In a week I will get the second cycle dosed through the port.
I too have decided to write a blog. It is partly because I have my children and grandchildren in countries on the other side of the world and in this way I can help them feel part of it all. Thank goodness for broadband internet and social media! I also want to be able to look back on it all afterwards and remember the feelings, stages , pain, and hopefully moments of joy I went through during the chemotherapy.”
There’s a lot of Gwenyth in this first contact: her directness, her honesty, and a bare bones, very precise, quite technical way of describing herself and her predicament. I had no idea who she was or where she was writing from, so I replied:
January 13, 2019, at 9:08
“Hello Gwen,
I’m very happy that you found my blog.
I suppose that things seem frightening at first, when we read about the experiences of others, but I try to make my posts honest, but NOT discouraging or frightening, because it hasn’t been my experience. What makes all the difference is the support you get from your family, friends…everyone who lends a hand or just brings more love to you.
Please let me know when you’ve begun posting your texts…I’d very much like to read them.
Till then, good luck and please come to the blog regularly. Perhaps we can help each other. Xo”
Sketch by Gwenyth
But what pulled her right into my daily life, and into the place in my heart that had been waiting for her, were a few lines written on my Facebook home page, sometime before January 20th 2019, in which she wrote:
“[…] I haven’t yet learned how not to be afraid.”
* * *
When someone you love dies—whether family or friend—you’re left with photos and cards, certainly, but mostly, you’re left with memories of them and your time with them. Important dates on the calendar, perhaps, and more importantly, memories of their presence in your life: the impromptu phone calls, the lunches, the hand held in tough times, the reassuring hugs, the shared worries about loves, children, and—when a friendship grows into a decades-old bond—even grandchildren. There are funerals attended in support of each other, hospital visits, things borrowed and returned, deep dark secrets revealed face to face, an arm around the other’s shoulder. Over time, you witness the ups and downs of their weight, the greying of their hair, the lines forming around their eyes, the dark marks on the skin of their hands left by exposure to the sun. You have it all: the smells, the colours, the textures, the sounds (especially of their laughter). Your memory banks are full of all of these things which are probably interwoven with memories of other people you love. Your brain has done the curating of the vast shared experience of your relationship.
But my friendship with Gwenyth—as inconceivable as it seems to me—consists of written correspondence and a single voice contact that was not recorded.
Queensland, Australia in 1968. Gwenyth was 23 years old! Her daughter was 2 years old.
On May 29th , just a few days ago, a notification from Gwenyth appeared in my Facebook Messenger. I instantly opened it—it had been weeks since I’d heard from her and I knew she was beginning to fail. But the message wasn’t hers. It was from her eldest daughter:
“Dear Michelle It is [… ] here, Gwenyth’s daughter. [Gwenyth’s husband] has asked me to send you a reply. We are so sorry to let you know that mum passed away 29 May. But now she is at peace and pain free. You can mail me to chat a little more at […] Thank you for your valued friendship with mum.”
I did email her. Immediately. Several exchanges between us followed. Gwenyth’s daughter is warm and kind and I learned what I needed to know about my dear friend’s last days.
When this happened, Simon was nearby, and heard me say “Oh!” and then whimper. I just remember telling him in few words that Gwenyth was gone. He moved toward me and held me. He knew what this loss meant to me. He understood all of the ways that this would reach into me.
Since then, I’ve spent hours tracking down every particle of Gwenyth—ever bit and byte—because that is how she was with me; it’s the form she had. I had her comments on my personal Facebook page; I had the emails we shared when a subject was so dear to us, or so difficult, that a more formal writing space was required. I had the public messages she left at my blog site, and the private ones she also sent through Michelle’s Blog Page, especially at the beginning, when her need for contact and her need to share her cancer experience was great but her sense of privacy and emotional modesty were still getting in the way.
And I had a jolting thought: what if her family took down her Facebook page quickly? I couldn’t bear the thought of almost every contact we ever had vanishing overnight—untraceable. So I’ve spent several days since then trying to track it all down, copying and pasting all of it into a file. It’s a document of roughly 110 pages. Incredibly, for me, it’s Gwenyth. I haven’t known her any other way, and yet, she was my very dear friend.
When I printed up every last page of our friendship, every trace of it there is, it was like creating an ash-filled urn, because it has physical substance, weight, form. I can touch it, hold it, and feel a connection with Gwenyth. But it also looks like the manuscript of a narrative, which it is. And it tells a precious story.
* * *
Gwenyth was not supposed to die before me. That’s the beginning of our story and it’s a fact. Her cancer was less advanced than mine, her tumour(s) confined to her colon, whereas my cancer had already established itself in my liver and lungs by the time I was diagnosed. There is no bleaker diagnosis than stage IV cancer.
In her earliest Facebook message to me on January 20th, 2019, Gwenyth wrote:
“I am stage III. Cancer cells in some of the lymph nodes but none obvious in the cell walls. No indication of any cancer in other organs. My surgeon says they think they got it all and the chemo is an insurance in case there are any “rogue” cancer cells floating around. So my prognosis is good. It is not death that I fear, it is the next year getting sicker and then better.”
And yes, when I first read these words, I thought: Lucky you!!! , and Wouldn’t it feel wonderful to be able to lean on that knowledge?
But Gwenyth had once again confided her fear to me, and without knowing exactly what its shape was, she was sharing her fragility with me; entrusting her disquiet to me. It seems clear now, that it’s in this way that she opened the doors wide to our friendship.
From the very beginning, chemotherapy was a torment for her. It ravaged her. For a few more months, she endured it. Eventually, it was stopped altogether. Her body’s resources were exhausted. And then, in April 25th, 2019, I received the following message from her:
Gwenyth:
“BEST NEWS EVER! The oncologist doctor says that I no longer have cancer and I don’t need to take anymore Chemotherapy tablets. She will hand me back to the surgery department for normal surgery follow-up care.”
Michelle:
“BRAVO!!!BRAVO!!!BRAVO!!! Now step out from under the shadow of the disease and live in the light of joy and love and make a long list of things that mean a lot to you and that you’d like to do or try…and make that your new life, I’M OVER THE MOON FOR YOU !!!” You’ve made my morning. Xoxox”
Gwenyth:
“We all wept for joy and the doctor handed out tissues, again, but for different reasons this time!”
Michelle
“I BET! That’s just wonderful news!
I may not see you at the blog anymore (because I’m sure you’d like to move past this recent traumatic period), but we can always message! Xoxoxo Do something fun and lighthearted every day.”
Gwenyth
“I would love to keep up the contact. You have been a very important person in my life—thank you for that. It would be wonderful if you too would get good news when your Chemotherapy is completed.”
Michelle
“It would indeed. Xoxoxo
So far, so good.”
* * *
And we did keep up the contact. The time between April and the confirmed return of her illness in late November 2019 is a period during which cancer was no longer the leitmotif of our correspondence. Gwenyth and I were given the luxury of discovering in just how many ways we were birds of a feather.
“My life before I came to Sweden […] was not at all successful. If you want to know about that, I can tell you about it later when we come to know each other better. So we can begin in January 1976 […]
Gwenyth left New Zealand in 1975, at the age of 30, not speaking a word of Swedish. She took classes along with 16 other immigrants from South America and Yugoslavia.
“ I came to Sweden with a bag full of clothes and a heart full of love feeling like Ruth in the bible—’your land will be my land and your people will be my people’. So romantic and so naïve!”
(How wonderful, I thought, when I read this: she was one of “my people”, which is how I’ve always thought of my adult FSL students). Eventually, she was proficient enough to undertake studies in chemical engineering, graduating in 1983.
“It was one of the biggest things that has happened in my life. I had lifted myself, with a little help from my friends, from considering myself dumb and a failure to knowing that I was as good as anyone else, had an education and that I could live on no matter what happened in my life.”
Over time, her career path shifted to specialized technical writing, where her bilingualism was a huge advantage. In one of our earlier Messenger conversations, she told me how, in 2006, she had started her one-woman consultancy company and worked for Ericsson in Stockholm for a few years. But she made me smile when she wrote that she:
“ […] also ran conversational English classes for companies and government departments”, adding:
“So I understand completely what you mean by it being exciting but exhausting. Yes, I agree that it requires a lot of energy and it is almost like getting them to act a role. […]
Artist: Gwenyth Wilson Rudstrom
* * *
Facebook Messenger, February 28th, 2020—post relapse
“Dear Michelle, Long time – no write. Have been through a bit of a down patch but seem to be emerging from it now. None of this is as bad as my memory of chemotherapy. I have just read your last blog. I know that I have now let go of the need to be busy which is part of the Christian culture in which we, in the Western world are brought up.
I am and that is enough. For me and for those who love me. This week we have done things like lawyers, will [etc.] We also made arrangements for what will happen after I die.
Today we visited the cemetery and the memory garden for urns of ashes. We chose a lovely spot in the forested part where it is quiet and green. It was there I discovered my current purpose in life. The process today didn’t worry me. I know I will die soon and am at peace with that. But […] , my daughter got upset. I suddenly realised that for me this will all stop when I die but for [my husband] and my daughters, life will go on. So my purpose in life just now is to be here, just as yours is. That is enough for those who love you.
Your loving friend, Gwenyth”
Gwenyth the snow angel, February 12th, 2017
My response, same day
“Beautiful Gwenyth,
Your message arrived in the evening, so I know that it was quite late when you sent it…I am so grateful that you thought of me.
It seems that you had a day of meaningful actions, deep feelings and thoughts, of clarity of mind and of peace. Everything you wrote to me, here, is Truth. And Beauty. And Love.
I keep rereading each passage. I suppose it’s true that chemotherapy distorts our time with cancer, and throws us into a life where treatment is ever-present and like a cage from which we cannot escape.
Your friendship, your honesty, your faithfulness to our transatlantic bond have given me the chance to share the experience with an initiate—someone who KNOWS. It is very precious to me.
It has been fascinating to me how quickly and courageously you made the transition from fear to lucid, wholehearted acceptance. You have such dignity.
“I am and that is enough” should, I believe, be the constant mantra of every human being.
I don’t know if my search for daily purpose is part of my Catholic upbringing…You know, Gwenyth, the strongest pulse in me, the deepest drive, is maternal. My sons have a lot of this in them too. They are nurturers […].
I was a tomboy as a child and yet even then, the only thing I was sure I wanted from the future was to be a mother—to have children.
It influenced all of my decisions, and it transformed how I taught my students—children AND adults. It was always about caring about them; making them feel seen and valued; believing in them; making the space we shared a safe space…
It didn’t always work out perfectly, but I feel pretty sure that their memories of our time in class are good ones, a time and place when they believed in themselves and never felt diminished. And I think they feel as loyal to me as I do to them.
And now, I feel that maternal, nurturing energy sitting idle. The roles have reversed. My children are now taking care of me.
My grandchildren are growing up (by next month, they’ll be 6 and 8), and won’t have seen their grand-maman as much as they used to or in the same way they used to because I don’t always feel very good…
(I’ve just started crying while I type this. My God. These things run so deep in us don’t they?)
Hrrrmmm! (that’s me clearing my throat).
I cannot take care of the people I love the way I want to, and this is very hard to live with.
But what it is teaching me is that there is grace in receiving, in accepting the love and help of others, and that I don’t have to justify the taking.
I’m getting there.
I think that’s why I finished the blog with thoughts of kindness. If I can walk a path of kindness and compassion and patience…If I can SMILE and BE, in a way that helps others to feel SEEN and accepted and loved…then I can let go of life more easily…and even more importantly, I can leave everyone I care about unburdened and at peace.
It’s a very tough challenge. “
* * *
Finger painting in oils, Gwenyth Wilson Rudstrom
Eighteen months is such a short lifespan for a friendship, but I really do feel that we made the most of it. Messages sent back and forth between us during the last year especially touched on everything from:
The pleasures of maple syrup: one delicious spoonful at a time for me, and poured over “thin, Swedish pancakes” for her, to…
Gwenyth’s adventures astride Selma, the bicycle she bought after her move to the city and rode everywhere possible, even through the winter of 2020, to…
The discovery of our shared love of the original three Star Wars movies.
On January 3rd, 2020, Gwenyth wrote:
“I once worked in a huge global development project at Ericsson that was christened “Skywalker”. All of the sub-projects were named after characters from the film. As part of the kick-off, all the members of all of the main sub-projects in all the development sites all over the world went to see the newly released Skywalker film.”
My God. How cool is that?! My sons would have loved her too.
There was her love of music, into which she escaped frequently. And then there was the day when I brought to Gwenyth’s notice that she was particularly feisty.
JAN 14th, 2020, 1:43 PM
Gwenyth
“You want feisty? These photos are of the wallpaper in my bedroom. It just looks like flowers but when you get closer, it is a real Kama Sutra wall paper. Even the birds are at it! It was on the wall when we moved in and I thought it too much fun to cover up!”
Michelle
“FANTASTIC! I love it. Tell me…did it inspire you both? It’s quite lovely.”
Gwenyth
“It is a big step from inspiration to happening!”
Michelle
“HAHAHAHAHAHA! I’m sure that’s just modesty talking…I’m really discovering a different side of you. But honestly, it’s lovely! And subtle, really.”
Gwenyth
“Yes, it is lovely. The people who moved out only moved across the hall into a bigger apartment so the children could have a room each. They re-wallpapered their whole apartment and said they would have put up the same wallpaper in their bedroom but it is no longer for sale.”
Michelle
“Well there you are. Glad you and Jan could enjoy it. You haven’t been there very long!”
Gwenyth
“I didn’t see it at first. The lady asked me what I thought of the wallpaper and I said it was lovely but I was not really a fond wallpaper fan. Then she said: Have you looked closely? Then I saw the detail and said: “We will definitely keep it!” I have had great fun showing it to younger members of [my husband’s ] family!”
Kama Sutra wallpaper
* * *
It was always clear that the first part of Gwenyth’s life, in New Zealand, bore the imprint of pain. I couldn’t help but sense that she had escaped something; that she had worked very hard in her life to deal with past trauma, which she alluded to in early 2020. Bits of messages like :
“I come from a teetotaller home with very Victorian norms and controls. On top of that my mother was a Seventh Day Adventist so you can imagine how innocent I was! […]”
And, in a message a few days later, on January 6th:
“I have always been the black sheep of our family, the little sister who shamed them all. (I’ll probably tell you about that some other day). […]”
Gwenyth did, in time, tell me the most important parts of her story, much of which I had read between the lines of her messages already. We spoke explicitly about some of her experiences, but it never seemed necessary to dig too deep. She would sometimes say: Enough of this sad talk…and we would move on.
We carry our trauma into every new day. It colours our perceptions and often distorts the decisions we make. Both Gwenyth and I saw this in our own lives and in each other. It has all made me wonder if perhaps colorectal cancer is the cancer created by internalized sadness and pain (Gwenyth and I were both the first known cases of colorectal cancer in our family trees).
On January 20th (2020), I received the following message from Gwenyth:
“Dearest Michelle,
I looked at your photo taken after your new haircut. Only one who has been there could see the signs of Oxaliplatin*. I shed a few tears at the thought of your tired and irritated eyes and thought about how the inside of your nose must also be sore. There is a Maori term that I wish to share with you because I feel it is so apt for you at this time [..]” (*Note: at that point, I had been off Oxaliplatin for more than a year: what Gwenyth saw were the ravages of Fluorouracil—also known as 5 FU—a drug I will likely be taking as long as I live)
What she introduced me too was the following Wikipedia definition:
“Kia-kaha – Wikipedia
Kia kaha is a Māori phrase used by the people of New Zealand as an affirmation, meaning stay strong. The phrase has significant meaning for Māori: popularised through its usage by the 28th Māori Battalion during World War II, it is found in titles of books and songs, as well as a motto.”
Stay strong. It was a grounding affirmation, and we would both need it.
Torn Bouquet, by Gwenyth Wilson Rudstrom
* * *
Because the treatment of advanced cancer is a relentless assault on the body, I think that it’s critical to find an outlet, a means of self-expression, of escape, a place of respite and a source of joy that places little strain on the body. My deep dive into writing has helped me through.
When Gwenyth received her terminal diagnosis late November 2019, something extraordinary happened to her. For weeks and months afterwards, it seemed as though she had left behind her clenched fearfulness and found herself instead in a state of grace, which carried her through to the end of her life, and opened up the possibility of joy in ways she would never have thought possible just months before.
And that’s when she astonished me with her final “coming out” as an artist. She had presented me with glimpses into that side of her months before, when she began producing works of art that helped her to conceptualize and assimilate her experience of chemotherapy. As I look back at it now, I can see both her emotional revulsion at what her body was being forced to endure, and her scientific-creative fascination with these same, devastating drugs.
January 29th, 2019
Gwenyth
“Yesterday I began a simple collage. I will use tiny torn up bits of Japanese rice paper that I have dyed with watercolours. They have jagged edges and various facets. The background is a pale wash of carmine with molecular structures drawn in ink. My hope is that molecules will faintly show through the rice paper. To be continued…”
“The Mole Molecules of Folfox Chemotherapy Protocol”, by Gwenyth Wilson Rudstrom
Under this image that accompanied her description of her project, she wrote: “These mole molecules affect everything in my life at the moment. Much more energy today.”
A year later, on January 8th, Gwenyth had returned to her “molecule watercolours”.
“Here are two earlier versions of the FOLFOX painting. First I drew the molecular structures of the three main components. Then I collaged ripped up rice paper that I had coloured with watercolours. Lastly I painted in a background with watercolours. I thought the background was too dark so I tried to wash it out under the tap. I was a bit heavy handed with the paper which Tore. Do you agree that the final result is quite symbolic of the process on one’s body?”
Folfox Molecules Gwenyth Wilson-Rudstrom
At this point in her life, Gwenyth found herself bursting with inspiration. “I pity the person who tries to take over my hard disk! I really need to clean it up. I have so many “Ideas for Art” pictures!” She was bubbling over with creative energy.
There was even a day, in early 2020, when she greeted me with the words: “I have been Arting!” (I proceeded to tease her about “the passing of creative gases”).
This is a painting and collage of my experience of chemotherapy Gwenyth Wilson Rudstrom
In 2017, Gwenyth had enrolled in an online art course (connected to a British university, I think). Working from home, she would send virtual, visual progress to her teacher. She had already set up adrawing blog to make things easier. Gwenyth’s final project, The Erratic: An Exercise is Scaling Up and Portraying Weight and Texture,made me gasp when I first opened the final creation. It’s a spectacular work of art. I love it.
The Erratic, Final Image, Gwenyth Wilson Rudstrom
To understand it, you can go to Gwenyth’s blog site, where she walks you through her process. In geology, an erratic is a rock or boulder that differs from the surrounding rock and is believed to have been brought from a distance by glacial action.
I had never heard the word used in that context before, and I found the concept brilliant. And there was, hidden inside it, this notion of a woman who travelled half way around the world–brought, too, from a distance, only this time, by the pull of a boreal world. You can also go see the time lapse video of The Making of the Erratic.
* * *
MY own journey these past two years has certainly been erratic, as I have been pulled into a mode of existence with a disease anyone would want to flee. I think Gwenyth felt the same way.
Human time is not the deep time of geology. We wake up every morning unaware of what lies ahead. When things are hard, this gives us hope–that change will come–but I think that most of the time, as we move through our busy, busy, jam-packed occidental lives, we live as though barely there at all.
During the last years of her life especially, Gwenyth was THERE.
I feel so grateful to have had a chance to meet her and come to know and love her. I never saw it coming. Two cancerous women reaching out to each other through fibre optic cables and computer screens.
Dear Gwenyth, this is my eulogy in your memory. Thank you for being my friend.
“The future is too far away for me to approach just now. This illness and these treatments make me feel everything so intensively, both pain and pleasure. You too I think. The place I live in offers me peace and beauty which helps me to stay in the moment. Goodnight my new and treasured friend.” –Gwenyth , January 29th 2019
It’s about the way events in our lives can become connected; even the smallest, which taken individually seem insignificant, strung together in a sequence that not only heightens the meaning of each, but which can make you feel as though life is sending a message directly to you. As though nothing about this string is random. If you think about it, you’ll surely be able to recall this kind of moment. Here’s what I experienced just days ago.
In a book I was reading, I came across the story of a couple who, already the parents of a preschooler, found out that they were expecting twins. Things had been going smoothly until, well before 28 weeks into her second trimester, the mother went into labour and both baby girls were born. One died very soon after in the neonatal ICU unit. Her sister hung on and was saved, though she suffered so much damage in the weeks following her birth that she has never been able to walk or move or speak or do much beyond breathe and take in nutrients and love.
The book mentioned that at the funeral for the lost twin baby, Raymond Carver’s short poem, “Late Fragment”, was read.
I must tell you now that I was already shivering, because while my twin sons will be 37 in May and are beautiful, healthy men, the fact is that one, Jeremy, the “second” twin, could have so easily died in childbirth when his umbilical cord prolapsed as he was beginning his exit from my body. Jeremy, who had to be cut out of me by emergency caesarian. Jeremy, who after 5 minutes, was still not breathing, simply hanging limp, unconscious and blue and…I shudder, because he came so close to death. Jeremy, who spent a week in ICU and yet miraculously came home with his brother Simon 6 days later. Still, for weeks and months and years, he was followed at the pediatric pulmonary clinic for what was thought to be congenital lobar emphysema. Whatever it was, it eventually corrected itself. He is brilliant and perfect. How this is so, I can’t fathom. His fate could so easily have been the same as either of those little premature twins— with an APGAR score of only 1, five long minutes after his delivery.
And because the story of those tiny twin girls unlocked such tender and intense feelings in me, I looked up Raymond Carver’s poem, which goes like this:
And those verses…Those verses…They are everything. They speak directly to me and to the lesson I’m learning every day since my diagnosis. And then I saw that “Late Fragment” is the final poem in Carver’s last published work, A New Path to the Waterfall, a collection that was written while he was dying of cancer. It was enough to cause me to gasp.
From the series: Ten heart-shaped designs by Hadi Shahidi-Nejad
During all of this, while overcome by the mixture of unutterable sadness and traumatic memory and astonishingly, joy—a joy that grew out of the absolute resonance of that poem’s message in my life–I’d been messaging back and forth with Christian. I was telling him that our beloved friend/family member Mario, for whom I’ve recently posted an online review of the biography he’s just finished—but which cannot be promoted the way it deserves because we are living in the time of COVID-19—had just then written the most kind, radiant short message of thanks to me.
A Warm Moment of Life by Hadi Shahidi-Nejad
So there was the tiny lost twin, and also the second, from whom life withheld so much of its richness; and there was my Jeremy, rescued from the grasp of life-altering injury; and there was a brief, staggering poem and its luminous message; and there was and is cancer, ever present; and the consolation of love, lavished upon me at that moment by Mario…all of these tapping one into the other like dominoes…
And I wrote to Christian, right then, amidst this unfurling wave of emotional truth: There are moments that simply are not coincidence.
Among the many staggering lines in Terese Marie Mailhot’s Heart Berries—a book I’ve mentioned before—there is one, spoken by her then boyfriend, and now husband. During a very intense period in their relationship, she writes that he said:
I’d burn my life down for you.”
I gasped. I read that statement and a feeling of heat and…envy rippled through my body. A shock wave. I wondered what It would mean to me, to be the woman who is told something like that—to want to say that to a lover—to have a man I love say that to me.
I’ve never been in such a relationship. I married the boy I met when I was barely 17.
Younger, those words would have thrilled me, but not for long, and the fire of them, the intense passion of them, would have scared me too and caused me to back away.
But reading that line now, and understanding its context which is fully revealed in HeartBerries…Hmm…I think of what passed me by. What I missed. I feel a pang of desire and envy. To feel so intensely about someone; to be desired so intensely by someone (in the context of the memoir, he is a quiet, introverted man), an outer skin would melt away.
I’m sure of it.
But after that, in the aftermath of that, there is the inner voice asking:
What does that mean?
How far would you go?
What would-could be the collateral damage of that?
Such an intense flame would frighten me, but I would also be bursting with my body’s response: heart pumping wildly, my very centre filled with such desire that I would do as a moth does…
What a startling way to be reminded that I am still a passionate, sexual person! That my body still wants what it wants.
Well, I know that already, those drum beats have stirred in me since my separation (and before, causing me such sadness and loneliness) and my diagnosis…With my hair falling out and my body and its energy being reshaped by cancer and treatment, feeling envious of the lovers in some Netflix movie…At bedtime, when memories of my skin being touched and meeting other skin make me restless and prevent my falling asleep…
I feel happy that my altered and damaged body is still very much alive to my sexuality and to its unique energy. But I also feel that that chapter of my life is over, and that door should remain closed.
How on earth could I do this to another person? Offering my body to a man now is offering him illness and decay; it’s trading insouciance—carefree lust, intimacy and love—for pain and sadness. It’s: HERE I AM, CANCER AND ALL. Ugly, damaged dry hands that will be rough against Your skin (You, that man); a body whose sexual responses will be unpredictable from one moment to the next. A sense of body shame that I don’t think I will ever shake. The unknown of it all…
The price of attachment.
I will be so much more trouble than I’m worth.
How could I do that to You (that man) ?
But then I sigh as I think of what it would be like to feel Your skin, the texture of it, how age has affected it, and Your smell, and Your hands and how You use them to touch…
Wouldn’t it all be lovely?
(SIGH)
(SIGH)
It would, it would. I would steal those moments and die having remembered that I was that woman too. Once. Again.
This brings me backward in time, to regret—not sexual, that was never a problem—and to emotional memory.
I know that it isn’t that I want You (that man) to burn down your life for me. No, after long years of heartache, I want the intensity and intimacy of KINDNESS. The loving that is wide open, exposed, vulnerable, wholehearted and generates JOY.
I would relish Your body, You (that man) who revealed in your smile, in the way Your eyes found mine anywhere, anytime, and showed warmth and love.
I would climb all over a body that held within it goodness, tenderness, patience, sensuality and generosity. I would blossom from this contact with You. I would risk in order to overcome my shyness, my self-consciousness and the pain I carry under my skin.
But it would be an invitation to suffering, for You. And that wouldn’t be love. Your kind heart would deserve better.
But I can daydream about what it would be like to fall passionately in love with a good, kind You. I believe You are possible. And that will have to do.
Note to readers: in the same way as the Branches blog post, this isn’t actually written text: it’s transcribed speaking (into my Iphone, to be precise). It thus has a different cadence, and comes together the way speech does, that is, not always in perfectly structured sentences and paragraphs. Rather, it loops back on itself now and then. It’s a bit of an experiment that I hope connects us more intimately.
* * *
One of the challenges that cancer has placed in front of me is figuring out what my worth is…what’s my value now that really, all I do is … draw resources out of the medical system and give very little back to society…
It’s hard to explain the value of some of the things that are important to me.
The first one is writing. Without work, the work that I used to do teaching, and without being able to actually take care of people in any significant way without becoming very tired or risking getting some infection, writing and reading are the two things that give real value to my days.
When I think of the quotidian, you know, the everyday life that I have, aside from cleaning and picking up and doing a bit of cooking: what do I do? What do I create? And I think that the writing really, really matters.
Alphonse Mucha. Woman in the Wilderness (Star and Siberia). 1923
* * *
So I guess that there’s a wheel that turns and the reading expands my life—there’s a density of content that comes into my life through reading all kinds of things. I’ve been reading Heart Berries by Terese Marie Mailhot. I was afraid to read it, originally, because I was afraid of the pain in her memoir. I bought it right away when it was first published, and then I thought oh my gosh I don’t know—this is a while back, too—and I’m just finishing it now but it could be read 5 times and each time you would draw out more and more, and I love that books can do that for me—for everyone—but for me, NOW, they can make me think and feel; they can make me puzzle out human quandaries and they can make me see other people’s pain and that helps to create perspective beyond my own life. They fill me. They are nourishing.
* * *
It’s strange, you know, I’m dictating this from the bath tub, and it occurs to me every time I take a bath how vulnerable I am. I’m alone in this house. I’m not very strong (laugh), and I don’t see myself as very strong: the mirror throws that back at me…And I think maybe that plays with a person’s mind—makes me less aggressive anyway—and I think if someone came into the house (the front door is locked, I check before I take my bath, but there was a time when I had forgotten to), if someone found me right now, here, with no clothes on lying in the water, cornered in this tiny room …
It was funny when I had that thought about a half an hour ago, and what went through my mind is that I’d let them kill me easily, I would let go easily. That’s the thought that I had. I wouldn’t fight too hard…and I’m puzzling over that. Maybe faced with the horror of being beaten or hurt or killed by some terrible, violent person, maybe, no, of course I would react; the will to survive would override everything, but…Tssh! Suddenly, I had a doubt and I thought—here I am thinking this right now—that the appeal that I might be able to make to anyone trying to harm me is: “The harm is done. Look at me!” You know, with my white hair and thinner body (which I’m not unhappy about) and the catheter port under the skin of my chest and…my vulnerability and the fact that tick-tock-tick-tock—you know, time is not my best ally—so…um…go ahead!
And that’s a very strange thought, but I may not be the first person to have a stage 4 diagnosis who has these thoughts when they’re alone (laugh) during the day.
There’s this endless cycle of questioning the value of my being alive and What is my purpose? What is my purpose?, that somehow, human beings, when you lose that sense of being plugged into the world that’s moving and changing, you lose your grasp of your worth. I have to figure out a way to express that more clearly, but … I suppose that’s also the case for people who live in residences/care facilities, shut away from society; and people who are hospitalized for prolonged periods of time; or people who have become isolated through mental illness or through the circumstances of their lives. Some of them have been abandoned by society—God knows that’s not what I’m trying to say about my own life—Oh my God! Not at all!—but when you ARE more apart from the active world it does something to your mind.
I woke up at 5:30 this morning, but I only really got out of bed at 7:30 and let myself fall back into weird dreams, which doesn’t happen very often—and as soon as I’m up, then I’m thinking okay, I have to justify my day. And so I emptied the dishwasher and put everything away and cleaned things up and…then I sat in front of my laptop, which is invariably in the dining room near the morning light (which I really like), and I started scrolling through some of the news, and then I listened to an older interview that Shelagh Rogers did with Terese Marie Mailhot, because I’m preparing a blog about the book. And then, Christian’s ad came up—the ad that he shot just a few weeks ago for Bell—it popped up on TV. And both he and I found out it was on air because a friend of mine who lives on Vancouver Island messaged me to say that she had seen Christian on television, and so Whoop! all of a sudden, there’s this bright sunshine and this beautiful clear PING! in my day, and I could focus on something that makes me feel very, very happy which is anything good happening to any of my sons. It’s a short internet and TV ad, I guess 30 seconds, but it’s funny as hell, and that was a good start.
Photo by Mikhail Iossel, Morning in Nairobi, Kenya
* * *
I cycled through that, and put it on Facebook and started tagging people who might enjoy it and got a good half hour of life just blooming in that fleeting little bit of joy. But then the guilt came back and I thought “Okay, what am I doing to justify just sitting here?”, and so I went back to taking quotes from the book, Therese Marie’s book, and then I emptied the dryer of a load and I…but I…there was this listlessness. I sat and I tried to focus and I felt guilty for not doing something more useful with my time.
I can’t go out too far because the car is at the garage right now, and maybe that’s part of it, but why is it that I feel this need to account for what I’m doing when I’m here at home, which I actually enjoy, and look forward to the quiet time? Not too much of it; there’s just enough of it, and maybe every now and then I could use a bit more when I get on a tear and I’ve got some momentum going trying to write a blog or trying to write some kind of an essay either for the library or for THIS IS THE MOMENT. I have to think more about that.
* * *
Cindy was here this weekend. Cindy is both friend and family, and she’ll be moving in here within the year, A lot of our get-together this time had to do with the planning, and taking measurements, and getting a designer involved in transforming the double-garage into a living space, and all these different things that have to happen fairly soon. What her plans would be for the house, and Simon and Cindy’s visions coming together—which they did quite easily and I think will continue to do quite easily.
Damian Elwes. Matisse’s Studio in Collioure.
We waxed poetic. Cindy is a builder, and she’s a nature lover and so the gardens will be expanded—there will be a stream and there will be fish, and there will be all these wonderful alterations: all the things that we can do in the future, and the fact that we can share expenses three ways. It was a fun conversation. It always makes me feel better to know that someone is coming into this house to extend the family—to make the family bigger—while I wait for Vickie and Christian to come live in Hudson (which is their plan) and while I wait for maybe Jeremy and his family to one day join everyone here because it’s so beautiful (there is pull that people feel as soon as they arrive in the town). This wanting an expanded family is very much tied to what I fear lies ahead—with climate change and the stormy, disrupted, incoherent life that awaits everyone. I would like to leave this endangered world knowing that those I love and care deeply about will be bound by the strength and safety of love, friendship and family.
There was also this fleeting moment, while Cindy was talking about things we’ll do, like travelling! Going to different parts of England, maybe going back to certain parts of Scotland or Ireland—I’ve never been to Scotland or Ireland but I’ve been to England, and I would gladly go back. And there was talk of the lake district and Cornwall…
…This fleeting moment when Cindy looked at me and I’m pretty sure she was thinking what I was thinking which is: Will you still be here? We were making plans and we were smiling and we were being optimistic, but the deeper current was: will time allow this for me?
Who knows? And it’s NOT DEPRESSING. It is what it is. It’s called reality and I HAVE TO think on both plains: I have to think: what can the future bring? What small joys, what big joys, what character-testing moments can tomorrow bring? But also what part of tomorrow may I not be there to witness…may I miss out on? Not twenty years from now because that’s obvious, but in a closer future, when will I cease to be there? What part of the “ near future” will I begin to be erased out of? And it was just the most fleeting moment but I’m almost sure she had the same thought at the same time. Maybe Simon did too, but I wasn’t looking at him, he was probably beside me, and he would be more used to those moments anyway.
Photo by Sue Parisella,
* * *
People in my position who are not able to be out in the world and productive and interactive on a daily basis in ways that most of us take for granted, do have to consider where the value comes from, in our continuing to be alive. Not just for others, but for OURSELVES, there has to be meaning to getting up and going through all the motions of having a life. And I think that people in my position who KNOW almost with certainty that their horizon is very short, that they won’t have 20 or 25 more years to blunder around and figure it all out, I think we have to be KINDER, I think we have to make EVERY SINGLE CONTACT genuine, and whenever possible KIND. I think we have to spread kindness, because time is running out for us, and what else IS there…in this life, that you can give besides your love and kindness. It has many forms, but in the end, that really is all that we can do and yes, it can be spread over a whole, long lifetime, and the whole planet, but when you get to the ending part of those years, I think there should be a higher dosage, a higher concentration.
* * *
And that’s not easy. I do find that my conscience has grown a greater capacity to demand better behaviour, and I’m well aware of every time I’ve been a lesser Michelle. Those times are frequent, and I think about them after. They’re not monstrous behaviours, just petty, small, judgemental, self-centred, envious…not being the best person I could be. Those failures matter.
It’s that simple. I’m not letting myself get away with anything or setting myself up as some kind of guide—that’s not it at all!— I’m just being very honest with you, whoever you are.
WHAT ELSE IS THERE?
I feel the imminence of death and am moved by such strong forces. One says leave something eloquent behind–something of substance: a book, a collection of written work; a piece of you that will live a little beyond your own body.
But another knows that this is misguided. It knows that I should strive to become lighter and “of light”. That I was always just passing through and that I am not Rumi, nor Tolstoy nor Emily Dickinson. That I should leave just the gentlest, ephemeral footprint. Traces of Love.
Photo by Michelle Payette-Daoust, Snow heart on the car window
I slid under the covers and my comforter last night, waiting to slip into sleep. I had just finished a perfect book—a posthumous compilation of essays by American writer Brian Doyle, titled One Long River of Song. After first reading about it in the New York Times, I went looking for it online, where it was unavailable.
It seems now that booksellers had underestimated demand for this title, or that the timing of things was off, and demand had shown up a little before supply. Because the author was unknown to me, and because he was described, here and there, as a “Catholic writer” (I still don’t understand why anyone bothered to make that distinction), I let things go for several weeks, thinking that maybe it wasn’t for me. But it niggled at the back of my mind and so, shortly thereafter, I tried again to order it, and was happy to learn that it was now stocked all over the place.
I want you to know that for me, One Long River of Song is a perfect book; and by that I mean that it found its way into my hands at precisely the moment in my life when I needed it the most, when I was most ready to absorb its lessons and its copious amounts of joy and elevation, poignancy, honesty and wisdom.
Brian Doyle died four years ago, at the age of 60, of brain cancer and so, as I read the many dozens of short essays in the book that Doyle’s colleagues and family worked very hard at collating and bringing together under one cover, I knew that the flowing, passionate, exuberant, funny, earnest, hopeful, occasionally wrathful and chastising, soulful and startlingly honest voice speaking inside my head as I read each essay was, in fact, no longer here on this earth. But of course, it is, by virtue of the writing this glorious human being left behind. As often happens when a book discovered randomly turns out to be a treasure, I read through it very quickly, in less than a week, and even managed, during those few days, to re-read many of the essays that reached deepest into me. And I had the shocking thought: I have lived longer than he did.
Michael Bennallack Hart (b. 1946) Stonehenge
I know, now, that I will keep it on my night table—close by. Always. And I know that it will help me through the harsh episodes that surely lie ahead (as they do for all of us except that with stage 4 cancer, they loom; they are adamant).
Once I finished the last pages of the book last night, which included four pages of acknowledgements ( ! ), I lay in bed holding it close, passing my hand over its smooth cover, finding it difficult to separate from it. As I write this last phrase, I know it sounds strange, but what can I say? It is filled with thoughts, feelings and a spirituality based on joy and humility—not humbleness, Doyle was effusive and forceful—that are helpful to me and resonant. They feel very close to sacred. There is an energy emanating from Doyle’s words that speaks on a frequency that I need to remain connected to.
I think that he may have known, in a whispering premonitory way, that he would die quite young (though his parents lived long enough to celebrate their 75th wedding anniversary!), as one of his older brothers did, at the age of 64. It is woven through everything he wrote—this sense that life is glorious and bristling and swift. His life and his writing were one long prayer of gratitude.
* * *
Among the many dimensions of my life that preoccupy me more since my diagnosis (or maybe it’s just that I have more quiet time to stop, consider, meditate), is spirituality, and I wonder if anyone reaches the end of their life with beliefs and a sense of the transcendent that have remained unchanged through the decades. It seems unlikely, even near impossible, but of course I look at current events and see so many communities that have become more rigid, dogmatic and even calcified in their systems of belief, that I don’t know where I fit in and am not sure that I want to belong anywhere.
Like Brian Doyle, I was raised a Catholic. As time passed, it became clear to me that the faith of my parents was no longer mine. For a very long time now, it has seemed crucial to me that my spirituality should be fluid enough to be able to embrace and integrate the discoveries of modern cosmology and science; that it should also be attuned to the voices of the mystics of the past and those among us, all of whom are able to distill life’s truths, retaining and sharing only that which is essential; that it should draw from Nature; and that it should be universal and unifying. After so many years teaching students from all over the world, with such a wide variety of cultures, languages and systems of belief, I’ve come to understand that there is always a core spirituality that binds us, that is expressed through love and joy and light… How we give, how we laugh together, how we see.
But where does that leave me, in times of weakness, fear and suffering? I can no longer speak to a personal Deity, the way I did when I was young, speaking to God the Creator, or the Spirit, or the personal Jesus…My understanding of the universe, thanks, in part, to the writings of people like Alan Lightman and the philosopher physicists, astrophysicists and quantum physicists of the 20th and 21st centuries, has opened me up to the notion of noetic experiences, but even more simply, to the necessity of a different language to talk about matters of the spirit, of the soul. And yet, the need to pray and to reach out to a force beyond me is still there, though personal entreaty never did feel right: there was always that feeling inside me, even as a young child, that so many people other than me deserved the ear of a listening God.
Since my cancer diagnosis, especially when the sun has set and the day is winding down, and I am more aware of my solitude, I do find myself speaking silently to the vastness, sending messages out that begin with “Dear Universe…”. Sometimes, the repetition of prayers learned in childhood such as the “Hail Mary” and the “Our Father” serve the same function as any mantra (it was lovely to discover recently that sometimes, Simon does the same thing, over in his bedroom). I wonder if I might feel comfortable sitting in a circle among Quakers, in shared silence.
Since my cancer diagnosis, I have felt a great need to reach out beyond myself to tap into the energy, the source of Love—that love that is all around me and lifts my spirits and brings me a deep sense of connection to others. It has made itself felt most pressingly when I’ve experienced feelings of bone deep, heart swelling gratitude.
With so little time to write these past few weeks, I resorted to leaving memos on my phone, a function I’d never used before.
TRANSCRIPTION OF VOICE MEMOS
December 27th, 2019
“This is the first time that I use Voice Memo on my phone, and I’m actually lying in the bath tub while I dictate this, and it feels kind of funny because my writing voice is a silent voice, it’s the one that only I hear in my head, or only you hear in your head, transformed, as you read my words, but still, I’ll give it a go.
This year’s tree
Umm…this is the second Christmas since my diagnosis and I was thinking of the difference between last year and this year and how great a voyage I’ve been on. Last Christmas I was only a few months in—it was the beginning of my 4th month—and I went to the different family events wearing a wig—that wig that I hated so much—and…feeling not myself, feeling disguised, feeling that this was not my life. I hadn’t grown into it yet, I hadn’t experienced enough of it yet, and so I felt very shy or very insecure, even though it was all of the faces of the people I love and who love me. Some were being very careful, especially in Sylvain’s family because we were only four months into the end of our marriage, our separation, but they were kind.
This Christmas was different because the lead up to it was my first real bout
The tiny angel that tops our tree
with the effects of being immune-suppressed, so I was really sick in December and a sick that isn’t cancer—which is no bother at all until you’re in chemo or until it starts to get very aggressive and nasty and so far I’m not there—um…but I was sick from being immune-suppressed and caught the norovirus which made me so ill—vomiting and diarrhea, one round, a second round—and leaving me very weak and…thinner, which wasn’t all bad because all my clothes looked really nice [laughter] and it’s not a scary thinner, just…reality—the reality of not being able to keep down enough food or to not have enough appetite to eat more food, um…which is being challenged right now, which is being reversed, I think…
But this year, the first Christmas celebration, which was the Daoust Christmas, where we were well over 30 people in a small house and where we were all one on top of the other, was actually one of the nicer Daoust Christmas’s I remember—they were all pretty great, but this one, I was myself, and that’s because I was a changed Michelle, 16 months in [that sounds contradictory, but it’s a fact]. And, there I was with no wig and something that was more true, I think. Sylvain has travelled 16 months without me, and I without him and there’s a truth to us that was not there before when we were busy running away from each other or being unkind to each other, and it felt good to be coherent, to be…in sync inside and out, and everyone was wonderful.
Christmas at our house, December 26th
And I think that when you’re in a place that feels grounded in something real, and when you feel unafraid to show yourself as you are, then good things happen. Embraces feel…the energy transferred in hugs and embraces is much more positive because nothing is getting in its way, and I’ve never hugged so many people and I’ve never felt more…all my impulses were to be open and to love and…I don’t always feel like that. I can be as petty as everybody else…
And then there have been all my cooking marathons with Simon. Yesterday, which was the 26th, we did the Christmas on my side of the family tree which has all kinds of grafted branches on it now. My mum’s partner Claude has been with us 20 years and gradually we just grafted more and more family members from his side, and now Christian with Vickie…we’ve grafted Vickie onto this beautiful tree that’ll yield different fruit depending on which branch grows and…bears the most and…yesterday there was a new member, Guy Bolduc, who is Claude’s daughter’s new love, and this is the love of two people in their fifties and yet it feels as sweet as if they were in their twenties.
And of course with Simon as the cook and me the assistant, well, there was more food than you can imagine and not enough ovens to warm it all in but all it did was make everybody feel wonderful and they just ate and ate and ate and ate until there was nothing left, and we exchanged gifts, and it was chaotic and it was wonderful and…my Mum couldn’t find her boots when she was leaving but of course her boots were right in front of her and Claude’s son Michel couldn’t find his coat but it was just underneath another coat on one hanger [soft laugh]…And all these crazy things, and yet everybody walked out the front door smiling and laughing as they left after a very long and terrific evening.
I think you could say that the stars of the evening were of course my grandchildren, of course Penelope and Graeme, but I think Vickie, and I think Pastou, her beautiful little toy poodle that the kids go crazy over…And my sister Danielle was there and was like a magnet to Penelope and Graeme with this wonderful strong energy she has and I think for the first time I felt how easily I could disappear back into the ether—not tomorrow, I don’t want to and there’s no reason to—but I felt the strength of all the bonds in this family on either side, and how much joy there is, how much genuine love of each other and desire to be together, and…none of that has anything to do with me. It has to do with the chemistry of all of us. So it has to do with me in the tiniest proportion…and that’s okay, because when I leave this earth, there won’t be as much pain; there’ll be a sad transition maybe, and then life will go on and all these people will keep being good to each other and helping each other out—mothering each other I guess is the way I could put it.
My ten year-old peace lily that produced 10 blooms just in time for Christmas (some are hidden and just beginning to push their way through).
The way I’d been stating, with wonder and pride, that in the 15 months I’d been receiving chemotherapy, I hadn’t been sick; hadn’t caught the plague that felled Christian in the late fall of 2018; hadn’t even had a cold.
Tsk, tsk, tsk. All it took was the good ol’ norovirus.
On Thursday, November 14th, thinking that I had allowed for a period of “minimum safe distance”, I drove the 35km down the TransCanada to visit my mum, who had been sick with the stomach flu since the previous weekend. Her partner, a retired physician, was taking good care of her, but he had returned to his home in the city on Tuesday to look after things there.
My mum, who is the Energizer Bunny of octogenarians, was still weak from her ordeal and in need of supplies. So I scooped homemade chicken soup from our freezer, enriched it a bit with some gently simmered vegetables, bought some Yorkshire Gold decaf and also regular tea (for guests) and a whole assortment of dry biscuits from the British tea shop here in Hudson, picked up some bananas, some applesauce and delivered them the same day.
Looking fragile, as she does more and more, my mum was nevertheless visibly jazzed to have some company, and so, with my white cotton gloves on (because you can’t be too careful with stomach flu, even after 5 days), I warmed a bowl of soup for her, made the tea, and got the cookies arranged on a plate.
The conversation was lovely! My mum brightened, and soon we were talking about books and Christmas and a whole bunch of things I can no longer remember. I purposely—in spite of the multiple cups of tea—did not use her bathroom before leaving. As I left, my mum said: “We have to do this more often, it’s such fun; our conversations are so interesting.” That was mostly just a good sales pitch. Mothers want to see their children, and cancer (and the added distance between us since my move to Hudson) has made a serious dent in my ability to visit her in any kind of regular fashion.
There is so little I can do for her…so little I can do for anyone, that I drove home imbued with a feeling of having done SOMETHING to alter my general ineffectiveness.
The next day, Friday the 15th, Simon was invited to dinner by one of the coolest couples on the planet, Heather and Adrien: she, a geology teacher at the same college as Simon, and he, an anthropologist at Université de Montréal—who speaks at least 5 languages fluently. They live in the most cutting edge house in Hudson. It looks like something out of an upscale Wallander episode. It’s a giant wood bungalow with all of the wooden structural features (ceilings, beams, walls, the works!) exposed. It’s geothermically heated, and situated on several acres of woodland. They’re vegan and grow most of their own food (of course!). Heather and Adrien are at the forefront of preparedness for climate change. They’re also warm and kind and that’s probably why Heather thought to say to Simon: “Hey! Bring your mum!”
The evening was so lovely. Mostly, I just sat there dazed by everyone’s brilliance and the breathtaking scope of their knowledge. I’d time-travelled and somehow wound up in a room with a bunch of Renaissance polymaths.
Plague doctor masque
And then dinner was served. And as the large bowl of tasty, multicoloured (there were beets!) roasted root vegetables served over basmati rice was placed in front of me—suddenly, as though someone sinister wearing a plague doctor mask had quickly entered and exited my field of vision—I felt the first gentle wave of noro-nausea move inside my stomach. The conversation was as animated as ever, but I was retreating from it, feeling hot and sticky and clammy as the waves of nausea started to build. I forced myself to finish my meal, sitting there like a stump, while the realization of what was happening to me became clearer and clearer, and then, in the gentlest, most urgent-without-sowing-panic voice, I asked my hosts: “Is there a bathroom nearby?.”
That poor powder room. Poor toilet bowl. It was hit with a thundering cascade of totally undigested, colourful root vegetables. Once. Twice. Oh God.
Twenty-four hours after visiting my mum, I was noro-infected up to my eyeballs. Is there a more mortifying way to experience a first encounter with brilliant and generous hosts? The odds are against it, I think.
Of course, this was just the beginning. I didn’t sleep a wink that night, and was up at least 10 more times, my stomach turning itself inside out. By the next day, it was like I had been scraped off the battlefield—like someone about whom the triage people would have said: We’re not sure about her.”
I spent Saturday in my bed, flattened under the covers, drinking only water and a bit of salt-spiked apple juice (I eventually switched to salted orange juice cut with boiled water—the hydrating mix recommended by the CHUM).
Sunday, I graduated to banana and some apple sauce and as much water as I could drink. And an extra-protein Boost I think.
I had my sights on Monday, which was my sister Danielle’s birthday. I wanted to keep my promise to her to take her out for BBQ chicken and GREAT fries (= Côte-St-Luc BBQ), and then bring her back to Hudson for the afternoon. I succeeded!
Tuesday and Wednesday, it was back to the CHUM for blood tests, my pre-chemo check-up and chemo itself. Back to the routine. Back to….just cancer and treatment. I had lost a kilo (2.2 pounds), but otherwise, I was good to go.
Except that…I wasn’t quite right. I still had occasional waves of nausea. Slight pain in my stomach. I was still skittish around food, and Simon was watching my intake like a hawk.
Then came the evening of Monday, November 25th. There we were, Simon and I, watching a movie while we ate the chicken parmigiana I had prepared. The movie was fun, the company, as wonderful as always and…oh no…my guts were out to sea. It was happening AGAIN.
This is the thing about the treatment of cancer (most especially after 15 months’ worth): it leaves you immune-suppressed. I had thought myself above this. I had developed a false sense of security. And boy, did my body let me have it. I spent another complete night heaving over the toilet bowl only this time, both ends of my digestive tract were expressing their outrage in tandem.
The next morning, with Simon off to teach but checking in with me every hour, I would have scared a ghost. I kind of looked like a ghost balloon that has lost all its air. I also had dark circles under my eyes (well, I think they appear when there’s no more moisture in your body tissue) and a chalk-white face. Every time I got out of bed (to get water, my hydrating juice and more water), I did it in stages, just to make sure I wouldn’t just slump onto the floor. I wasn’t sure I had measurable blood pressure.
And I slept and slept and slept. And when I awoke, I’d sip a bit more liquid, and then, at times, my mind would wander about, picking questions out of the air like: How many times in a row can you relapse with gastro-enteritis? Can cancer spread while you’re being desiccated by a virus? How much weight am I losing, I wonder? Will food ever appeal to me again? Could I just live on bananas instead?
* * *
Tuesday ended, then Wednesday, Thursday and so on. And here I am, living what should have been chemo week, but turned into a period of convalescence.
It’s Friday, December 6th. I’ve lost weeks of my life, and 3 kilos (about 6.5 pounds). Chemo was cancelled this week when blood tests indicated that my calcium and potassium levels disqualified me. Well, gee, d’uh. Call it dehydration or desiccation or The Great 15-rounder with the Norovirus, but expect a person’s electrolytes to be damned scanty when the final bell clangs.
I’ve been taking calcium (mint green coloured) and potassium supplements (white and looking alarmingly like suppositories) since Tuesday morning. I feel much, much better, but every visit to the bathroom is still a full systems check. I’m getting there. God bless electrolytes. And the love of sons who care for you and check in on you.
* * *
I hope you’ve smiled through this. Though every word of it is true, it was meant to make you chuckle and okay, cringe a wee bit too.
But during all of those days when I was just lying quietly under bedding, too tired and sleepy to read or watch Netflix or Britbox or anything else, I was still living. Lying there under the soft, warm weightlessness of my duvet, my head propped up by three pillows, able only to watch, through the window, the light changing outside, and hear the cars and occasional trucks zip up and down the street, I was mostly inside my head.
I feel as though I’ve just lived through a dress rehearsal for my last days—for my palliative weeks. I think I got a glimmer of what it might mean to become so debilitated that I can no longer, or barely, get out of bed; that I no longer have any sort of appetite. It’s easy for me to see why I might choose not to fight. No more 15-rounders. No more rounds at all.
The norovirus telescoped from out of my immune-suppressed chemo body which telescopes from my cancerous body…the tendrils getting thinner at each remove from the point of origin, until I could barely touch life at all…if only temporarily. This time.
I was recovering, quietly, in a home that is mine and also Simon’s and soon Cindy’s too, and it’s a place where I feel loved and safe. This fills me with gratitude. A place where I’m surrounded by books and all of the human experiences, stories and meditations these contain. This brings me joy. A place where the spaces left on the walls are decorated with the faces of family members—my children and grandchildren—and the artwork of friends. This gives me hope for the future. Their future.
My fifteen-rounder has brought death closer to me, and helped me to feel less afraid.
“To truly laugh, you must be able to take your pain, and play with it!”- Charlie Chaplin
Begun on October 15th 2019—while waiting for blood tests and my appointment with my oncologist (which both took place) and a CT-Scan, which was postponed to next week because the machine broke down.
I’m close to the age when I could have retired from teaching—but I wouldn’t have.
I would have kept at it for many more years, though I would likely have become a little pickier about the contracts I accepted, not wanting to drive around the planet anymore in winter.
That was the story of my life “before-cancer-moving-from-Pointe-Claire-and-separating-from-my-husband”.
I now associate the train with life since “my-cancer-diagnosis-moving-from-Pointe-Claire-and-separating-from-my-husband” and with the hospital and treatment. I sat in the train this morning considering how routine my existence has become and yet…
As I lined up to confirm my registration for blood tests on the 14th floor this morning, I had this thought: What if you had skipped the last 15 months and just suddenly –ZIP!—found yourself standing in line here at the CHUM, feeling exactly as you feel right now?
I would of course be terrified.
The altered condition of my eyesight, my skin (I’ve had two nosebleeds while sitting here in the first floor eating area, scribbling these notes down and running out of kleenex), my hands, feet, nails…The overall condition of my body would likely cause me to jump, startled, and perhaps shriek. My body–joints, spine, the works—is stiff and sore and rickety and alien. Without the fourteen-month-long, gradual erosion of my wellbeing, surely I would cry out in shock. Howl. And then just probably cry, frightened and uncomprehending.
What human beings can get used to… Maybe that’s limitless. Or maybe it’s like the frog that sits in the gradually warming water until it boils to death.
These past fourteen months of cancer treatment have been a kind of immersive simulation of aging, with its sprouting of aches and pains, its limiting of movement, its incremental losses.
I like to think that aging is a gentler process; that it sneaks up on you slowly, though inevitably, and that for this reason, is less cruel than advanced disease in middle-age.
I’ve been observing the oldest among us. I would say “the elderly”, but that expression often comes with a hint of being patronizing. And yet, it’s a lovely word. I have been paying closer attention to our elders of late (nos aînés). Strangers as well as people close to my heart. I’ve felt that we are on the same path, mine shortened by the surprise of a new cancer in my family’s gene pool.
For as long as I can remember, I’ve thought of 80 as the age at which I would consider a person old. No scientific reason. Perhaps the simple fact that when you enter your eighties, you can pretty much figure you have less than 10 years ahead. Several of the people I love the most on this earth are in their eighties now. They’re among the fortunate, because they still have health of mind and body. It’s biomechanics that’s messing with their lives. They ache in places that have just worn out.
I often wonder about their relationship with time. Do they see every day as expansive and open—though their remaining years are numbered—and simply push death into a muted space in their minds?
I can’t do it. This has everything to do with the tight time box in which I live. I can’t break out of the two-week cycle of treatment and the disruption and disturbances that drag along behind it. And I don’t dare think about what will happen when the cycles of this clinical trial come to an end. So…
How should I count time now?
– By the number of chemo sessions—24 equalling roughly a year?
– By the number of grey hairs that have appeared on my sons’ heads since this all began?
– By the expansion of my love for my grandchildren—those born and those I hope to see born?
– By the mountains of books I’ve been able to read through all this?
– By the friendships cemented through this ordeal which is NOT a wasteland?
– By the number of seasons that have passed: mindful of the sounds of each, the smells of each, the beauty of each?
– By the people I’ve met online as a result of reaching out blindly?
– By the length of the list of chemotherapy side effects I now live with?
– By the quality of the regrowth of white baby hair that now covers my head?
– By the number of evenings spent in the den with my sons and friends, wrapped in soft blankets and binge-watching shows on streaming channels, and DVDs?
– By the number of Dungeons&Dragons sessions I’ve participated in since my diagnosis?
– By the number of times I’ve stepped out the front door of this house in Hudson, inhaled deeply, and felt the goodness of the air?
– By the losses of loved ones that have come to pass these last 14 months, each a warning, a wake-up, a reality check?
– By the number of days’ endings, during which I snuggle into my bed propped up by a sultanic mountain of pillows and read till my eyes can no longer stay open?
– By the recurring meltdowns I’ve experienced—all fight drained out of my mind and body and sadness moving in?
– By my increasing, constant resistance to being trapped inside a small life of two-week cycles?
– By all of the lessons I’ve learned since having the wool peeled away from my eyes?
– By the degree of my transformation into a wizened and hopefully wiser woman?
– By the growing sense of an ending that I am moving toward ?
– By the increasing understanding that pain and love are a two-sided coin: the more I have experienced sadness and anguish, the more I have turned to love and the state of grace it makes possible?
Jaroslav Panuska Death Looking into the Window of One Dying (1900)
On Friday, September 27th, Greta Thunberg came to Montreal to speak a little, but mostly, to act as a beacon—a shimmering example of what it means to have the courage of one’s convictions.
She, with her diminishing body (at least that’s what appears to be happening to her as her self-sacrifice to the cause of climate change siphons her energy), but growing presence on the world stage, is doing more than it seems possible to ask of any human of the twenty-first century.
She spoke very briefly and shyly before the march began. Her presence was enough: Montrealers were galvanized. Somewhere between 300 000 and 500 000 men, women and children showed up to the “Strike for Climate Change”.
Crowd on Mount Royal, September 27th, 2019
My city was so beautiful that Friday. The turnout: unimaginable.
I had been invited by my good friend Ann to join her and her party at Mount Royal (or Mont Royal). Alas! Though every cell in my body—even the malignant ones !—wanted to be there….
To REPRESENT;
To add one more person to the crowd;
To YELL how critical the imperative to radically transform our way of living on Earth is.
I just couldn’t:
Stand for 4 to 6 hours;
Risk exposure to pathogens in such an immense crowd;
Walk around for hours and hours with no reasonable hope of finding a bathroom (chemo leaves poisons in me that multiply my visits to the toilet as my body’s filters fight like mad to clear it all out).
So, sadly, and instead, I sat for hours in front of my laptop (we don’t have cable) watching the CBC live feed–as unscripted and as raw as such things get.
It wasn’t what it could have been (for me that is), but I did feel part of that happening. I felt joy. My heart beat faster as I scanned as many faces in the crowd as I could, trying to gauge the energy levels there on the ground, and the benevolence, the generosity of spirit, the commitment of the marchers.
They were THERE, commingling, and I was tucked 60 km away in Hudson, but I received so much from them. I was hope-filled. Maybe Montréalais (and Québécois?) are truly ready for the massive change that MUST begin—the complete paradigm shift we will hopefully survive—still connected and caring about each other and about our home planet.
It’s a maybe I want to put stock in. A few weeks ago, as a bunch of us—all of them friends who were originally Simon’s and Christian’s from work and other parts of their lives, men and women across several generations—played D&D together, one of the men, a dad in his mid-forties, said, regarding the Strike for Climate Change that still lay ahead: “Forget my generation [he’s Gen X], and every other older one. My generation went for the money, just like the rest did. it’s humans under the age of forty who have to take the reins and change the world.”
I think that intuitively, we all felt the truth of his words—the “You can’t teach and old dog new tricks” fatalism. But why accept that view?
The week following Montreal’s Greta-inspired strike, a La Presse columnist wrote a piece about the energizing effect of the event and the high so many were coasting on in its aftermath. And then he doused his readers with cold water. With the next federal election just a few weeks away, despite the regular sounding of the climate change alarm and the hundreds of thousands who marched with Greta in Montreal, according to the most recent poll, climate change is the number one issue for only 21% of Quebecers, whose top concern is taxes and the economy: the deciding factor for 36% of Quebec voters. Of no comfort at all is the fact that in the rest of Canada, 43% consider taxes and the economy most important.
Despite the negative effects of chemo on my eyesight, this rapprochement with death that I’m learning to accept as I live with advanced cancer has given me a different sort of clarity. When you live outside of the daily presence of death and dying, it’s so easy to cozy up to the illusion of a slippery, sliding timeline; to think of the future as something always there…undefined but lying waiting for you…And what gets lost is the urgency to live fully, which requires that you care about every moment.
How Greta Thunberg came to live with that sense of urgency is a mystery to me, though I suspect that there are far more humans like her than we might think—people who want to live long and full lives but who take not one day of it for granted. Such mindfulness can be a burden. It makes of some of us canaries in a coal mine.
On September 27th, I felt love for Montrealers and gratitude towards Greta Thunberg.
If you accept, as I very much do, that our beliefs, thoughts and intentions affect the physical world, then you may have experienced Friday’s march as a noetic event. A moment of elevation.
The people I know who were there on the streets, united in this single cause, felt it. All of them. Ann and her group. Cate and her gang. Anne-Marie and her companions…
Montrealers came together and lifted their faces to the sun, the blue and the clouds, and were passionate and impatient and sincere in their worry, and jubilant, offering their prayers for a future for all. It was a marvel to witness.
Montréal, je t’aime.
I’m always at risk of having hope, lightness of being and belief in the future trampled by my cancer and its effects.
Greta and my beloved Montrealers have helped redirect my energy. OURS is a fight worth engaging in. A future for everyone. The collective joy of being alive and filled with shared purpose.
A month ago, at a time which roughly coincided with the beginning of my second year in this clinical trial and the repetitive sameness of the life it has reshaped for me, something unexpected happened.
It was Monday morning, the chemo week Monday when I head into the CHUM to have my pre-chemo blood tests done, and to see my research nurse and one of the oncologists from the team who treat my cancer. Every part of this day is so familiar that it has become routine—from the moment I hop on the train at Ste-Anne-de-Bellevue to the moment I get out of the metro and follow the short tunnel that leads directly underground to the first floor of the CHUM.
I often stop at the small café there and grab a decaf coffee before heading toward the elevator that takes me to the 14th floor. Once there, I immediately register my presence by swiping my medicare card under a scanner which then issues me a small white paper on which is written a number—something like PL025 (PL for prélèvement, or blood test). My nurse and doctors are also immediately notified of my arrival. It’s a routine I’ve performed dozens of times since I first began treatment. But four Mondays ago, nothing went to plan. The moment I stepped off the metro and started my walk, something wavered inside me. My autopilot shut down and with no warning at all, my eyes filled with tears and there was such pressure in my throat that I could barely swallow.
I was coming undone. Having some sort of quiet but perfectly visible meltdown. I continued walking down the hallway, past the angelic guard who greets every single passerby with a smile and words of wisdom, taking deep breaths and waiting for this destabilizing malaise to subside, but a wobbly inner voice repeated only Oh-oh, you won’t be able to get it together—you won’t be able to stop crying…, drowning out the part of my brain where my wits were being overridden and which shouted: “What the hell’s going on? You’ve never felt this way before. You LIKE the CHUM. It’s Monday, the EASY day. Get a grip!
But then came that vacillating, gushy need to cry again…
God. Well, this was a new low. I entered the elevator with shiny red eyes and the sniffles. Once on the 14th floor, I scanned my card while snot clogged my nose and throat. You know this feeling if you’ve ever had a good sob. Your pulse is elevated, you feel unsteady. Your breathing is shallow and rapid. You tremble. It’s completely embodied.
When my nurse, Chantal, arrived to greet me and asked how I was, I blubbered, like a baby, a rambling apologetic explanation that contained a lot of sorrys (or in this case, Désolée, Excusez-moi), rattling on about not being sure exactly why this was happening, although I did have similar experiences at home; that it didn’t even mean that I was sad, that it was just my wonky filters…
Chantal, who is the most serene human being on the planet, smiled gently, then hugged me and reassured me that I wasn’t the first patient to have emotions like this, and that she would be back once I’d had blood drawn, and we’d do my weigh-in + vital signs before seeing the doctor. Business as usual, was her message.
illustration by Jon Han, New York Times, June 25th 2016
And so I sat and waited with sorrowful pink eyes and Kleenex in my hands, feeling mortified. I was on the cancer floor—Cancérologie—and I was such a depressing sight! What must the rows and rows of fellow waiting patients be thinking as I sat or walked here and there. Her treatment must be going poorly, or She must have recently received a brutal diagnosis or bad news…
And STILL, my chin was quivering, my mouth was dry, my breathing was shallow and my eyes, determined to remain fountains. When I was finally called in to see the oncologist, it wasn’t my primary physician, Dr. Aubin; it was Dr. Loungnarath, a lanky, curly-haired, imperturbable, youngish gastro-intestinal surgeon in oncology, who greeted me. And of course, the minute he asked: “Comment allez-vous?”, I started blubbering again, as Chantal watched, still smiling at me with compassion.
Dr. Loungnarath looked at me, and said (in French): “Well then, we’re going to give you an extra week off.” To which I responded a shaky “Thank you, I think maybe I’m a little weary (sniff-sniff).”
(Surely there are more dignified ways to get an extra week off from chemo.)
* * * *
I was back in chemo last Wednesday, smiling, and my composure regained. My veteran patient’s game face back on. But this time I carried with me a slight fear, or perhaps more of a doubt that I can count on myself.
What happened three weeks ago?
What short-circuited all of my defenses and let the floodwaters loose? (and what were those waters all about?)
I sat down and made a list of possible suspects, of possible triggers. It includes:
How small my life feels at times.
How circumscribed my days are.
How similar the weeks are: one on/ one off.
How small is the loop I live in.
How altered the future appears.
How I feel from day to day—the limitations of my body going through chemo
The limitations of my body in illness.
I suppose that what this amounts to is fatigue and a deep, bone weariness, that I’m mostly conscious of when it reaches a tipping point.
And this is how and when I slip into self-pity.
In her memoir Gather Together in my Name, Maya Angelou wrote that : “Self-pity in its early stages is as snug as a feather mattress. Only when it hardens does it become uncomfortable.”
Have I allowed myself to snuggle up with such a nasty emotion? It just may be. And if so, then I can say that self-pity is a small, stifling place that I don’t want to go back to.
Since then, so many things have washed over me. One of them was a simple conversation with Simon one evening in the den, where we were watching Netflix together. It was perhaps one of the more melancholy and intense shows, and we started to talk about sadness, and how people deal with the pieces that are missing from their lives. Simon always has a broad perspective, and as we chatted, he mentioned that human beings are programmed to fixate on the negative aspects of their lives—on the missing or broken pieces; and he said that if you tell someone 25 positive things about them, and 1 negative thing, that they will almost surely fixate on that one negative thing…That we are made that way, And so he said: I try to not allow my mind to go there—to those places of dissatisfaction and unhappiness. I try not to let my thoughts wander there. And I say to myself: you are one of the luckiest people in the world. You are one of the luckiest people in the world.
And I smiled. Because I remembered an exercise I used to have my students do in French classes, It was a questionnaire designed around select statistics and the world population. Things like: How many people in the world earn less than $5 a day? How many people earn less than $10? $2? What percentage of the world population has a university education?…
And of course, the survey revealed two things: the first was that, by and large, most people have shelter, access to potable water and access to the internet via cell phones; the second was that everyone in the classroom, because they are living in Montreal, is likely to find themselves among the top 10-15% of the world population in anything that’s related to affluence and abundance, and a social safety net, and standard of living.
I remember how the first time I put a group through this (I had them guess at the numbers in teams—they chatted away like mad), all I felt was indecently fortunate.
And so, Simon’s exhortation to focus on our common great, good fortune; and on the plenitude that is ours; and on the love, friendship and family; and to make gratitude a habit…
Well…it sure beats self-pity.
As a matter of fact, at a time when we are actually speaking in urgent and terrifying terms of apocalyptic climate change and mass species extinction, my self-pity is indecent, and I am a sorry-assed human.
If my tone slides back toward that small, stifling place, tell me to shape up.
This is the first post that I produce from the office in our house.
It took a full year of living here before I was able to muster the energy (mostly psychological I think) to clear the space—which had become the dumping ground for all of those I’m-still-not-sure-where-to-put-that-yet-so-let’s-stick-it-in-the-office objects—and make it a working, appealing place to write and spend hours of time (I’m so sorry Christian).
Well, it’s done.
Just in time. Ha! Tomorrow is my birthday. July 22nd. I’ll be 61 years old.
A decade ago, you would have mentioned that tomorrow I’d be 51, and I would have been as non-plussed as if you had told me that I would still have a nose or toes the next morning.
But this year, I’m finding the experience of my birthday peculiar. There’s the very obvious fact of my still being alive. Which is everything.
And maybe that’s it. Jeremy and Anne and the kids had us (a big chunk of the family) over for a birthday party for me last Saturday, the 13th, because this weekend, they knew they would be celebrating Anne’s parents’ 50th wedding anniversary. FIFTIETH!
Later today, we’re headed to my mum’s for a second birthday supper (she was at last week’s too), minus Jeremy’s gang. Finally, tomorrow after driving to see my grandchildren at their swimming lessons (yippee!), Simon and I will have some lunch and then go see a movie (Spiderman), because, well, it will be the actual day of my birthday, so more has to be done!
I was so happy last week at Jeremy’s, but also trying to find my bearings. And that same discomfort is making itself felt in anticipation of this afternoon’s program. I love all of the people who have sent me their wishes, who have invited me to their home, who have told me through cards and constant thoughts and actions that I am loved. Tomorrow, I anticipate lots of Facebook messages…
And yet, what I wish is that it all be wrapped up in one dense and compressed two-minute bundle of time. And be over with.
Turning 61 isn’t a shock to me—no matter the progress of my disease (there is NO progress at this time, as a matter of fact, and I can only be grateful every day and hope that this continues to be true for a very long while)—I did figure that I would be here this year. Everything ahead…that’s a different story. It’s all fiction, till it isn’t. That’s my narrative now, and maybe it should always have been so.
Bindweed
But this year, fêting July 22nd feels excessive. Enough about me! It feels like for the past twelve months, from the moment of my diagnosis, too much of every day has been about me. I’m human bindweed; I have invaded the lives of everyone I love, messing up their schedules, clogging their plans and adding a heaviness to their lives…
I have been made invasive by this incursive disease called cancer. It isn’t my intention to leach into other people’s lives, but it is my effect. And the people I love, they’ve been so…not just tolerant, but gracious! Kind. Reliable beyond the call of duty. Joyful. Helpful. Indefatigable. Good natured. Sensitive. Compassionate. Perceptive. Irreplaceable. Constant.
Maple sapling
The best thing I could have done this July was give them all a break! But, observing our garden, Simon and I are learning all about the persistence of weeds, and how they cling to other plants and to the soil—in order to live.
I would prefer to be one of the maple saplings sprouting up in the part of our property that we’ve decided to leave fallow, and that Simon and I are rooting for, imagining a future, maybe a decade or two away, when the tiny saplings will have become lush and beautiful trees that blush every fall.
The most I can do, now, is hope to watch the saplings grow, unencumbered by weeds.
My extraordinary friend Louise, who will turn seventy this summer, said to me (in French): “The thought of turning seventy, I’ve gotten used to, [it will happen in July] but then I think that the next milestone is eighty!” (she looks much younger and acts agelessly). I look at her and say: “Seventy sounds awfully good to me.” Ah. She realizes what she has just said. That’s how most of us live, isn’t it? Counting our decades before they’re hatched.
The list of my chemo side effects continues to develop insidiously. Lately, it’s eyes that tear and leak and burn almost all the time, causing dramatically reduced vision; joint pain all over the place. The other day, my right thumb felt like it had been sprained, and is still very sore; this happened as I walked in a parking lot, touching nothing (Ouch!). Instant injury. There’s my left knee, my right hip, my right elbow (preventing me from doing the cobra position in a sun salutation!); my lips are cracking and peeling; if I sit—the way I am now, to write—for any length of time, I can barely rise from the chair. Everything has become stiff and painful. I am the Tin Woman, like my partner in the land of Oz.
BUT (here is the loveliest of kickers): I have neuropathy in my hands and feet, which is why I’ve been taken off Oxaliplatin, as I’ve mentioned before. Probably temporarily. But what I love is what the doctors say. They say: Well, we’ll give you a good long break because otherwise the damage can become permanent.
I smile inside and out. A little, invisible balloon of hope rises from my fearful mind. It could become permanent. You don’t say things like that to someone you know will likely be dead in 2-3 years…At least I don’t think you would. And that’s enough for me right now. They’ve given a new meaning to permanence.
Last week, during one of the loveliest lunches I’ve ever had with my mum (who is 84), she says that of course, SHE DOES NOT WANT TO OUTLIVE ME (this is every parent’s nightmare—age has no bearing here). On the other hand, of course, as she is FULL of vitality and loves life, she wants lots more of it. I say to her that she looks just fantastic sitting across from me, and seems likely to be on track to reach well into her nineties. So we agree that we will try to leave this world as close together as possible, neither one having to live very long without the other. She seems satisfied with that. It’s a goal she can live with.
My son Christian and I are writing a Harlequin romance together. It was his idea, several years ago. It took us a while to get it on the rails. But oh, what fun we had thinking about it and planning it. It was an idea born well before we knew of my cancer. It was always meant to be serious fun: that is, something we would do for the joy of it, but with the wholehearted intention of having it published and earning income from it. We read some romance novels to prepare. Christian went to the Harlequin website to gather up all of their “How to” parameters. We’re more than half way in. It’s set in a place just like Hudson. It’s for real now. Not just pie-in-the-sky. We work so well together. I want to see this through to publication. I want it very much. And while he and I are busy making it happen, there is joy and lots of looking-forward-to. What I want most from this project is the doing, which keeps us close, and something more. Before I die, I want to know that Christian’s writing life is launched. I already know that he can turn out publishable books for the rest of his life—his writing voice is so distinctive, his mind a whirring generator of narrative (I don’t know how he keeps it all inside his head but that, apparently, is no problem at all)—but I want that to have begun. I want to see it and KNOW that he’s got his foot in the door..
The Cloud Man blew on our backyard trees last week (or perhaps he just kissed their tops? (Photo taken by me)
And then there’s Simon, and this multi-generational living project he conceived of, that took one hell of an unpredictable turn last summer when I was diagnosed just as we moved into our new home. His twin, Jeremy, lives happily in Beaconsfield with Anne, and Penelope and Graeme (we’re all goofy, over-the-top in love with them). Jeremy’s life is also enhanced by the ineffable bond he has with Simon, and by his love for Christian (and let us not forget that his mother and father also adore him). But Simon’s vision of the future included this house in Hudson, which is nothing to him if it isn’t a home.
I don’t want to die before our friend Cindy has come and converted part of the house into her studio apartment. This was always the plan. I know that time will allow Simon to create “family” in one of many possible reconfigurations that are meaningful and love-generating. But I don’t want to die before others are here with us. I don’t believe Simon is meant to live alone for any length of time whatsoever. I don’t imagine many identical twins are, but someone as gregarious as Simon? There are things I want to know, that I want settled, and this one is important.
* * * *
Next month will mark our first anniversary here, in Hudson. This has been the year to topple all previous ones. I’m so glad that none of us is saddled with the gift of prescience.
The results of my latest CT-Scan came in a few weeks ago, and they remain favourable.
Nicolas Martin, (b.1980), “Woman Sitting on her bed”
Once again, there are no new tumours and no growth of the existing tumours. Just like the two previous scans.
The CT-Scans give my life in treatment its rhythm. Every eight weeks marks a beat. Between the scans, if I’m feeling good, I do, on occasion, observe my mind escaping into flights of fancy, allowing me to experience surges of optimism; tiny glimmers of hope that work their way through the cracks in my defences, whispering indulgent thoughts like: Maybe this will last for years…Maybe the tumours will remain dormant…
These thoughts float just a little while, and I hold on to them because it feels good to experience buoyancy and light-heartedness. Just a little while.
And then another part of me shuts that down…but not before anxiety slithers in. Why would this happen to you? Why, when so many others experience the despair of treatment that isn’t working?
Over and over, every eight weeks, I go up, then down, then fall into something between hope and resignation.
I’ve begun to realize, too, that I am, in fact, living inside a very specific countdown. It’s a two –year countdown, and I’m now down to 15 months remaining. That’s the duration of the research protocol (clinical trial) I’ve signed on for. It hit me a little while ago that every month that goes by, every CT-Scan cycle, inches me closer to the end of the trial and its expensive immunotherapy drugs.
And then what will happen to me? The doctors tell me that my results are uncharted territory for them. That they have not seen what they’re seeing with my body’s responses in previous stage 4 patients with my type of cancer, and feel confident that it’s the immune drugs at work. This strange stasis that my body is in…How long will it last? And how long can a person stay on medications that aren’t meant to be taken forever (and cannot, because my life is simply not worth that much health-care money)?
Jean-Michel Melat-Couhet, “Swept by the Wind”
I go up and down like this all the time. It reminds me that the word disease means DIS-EASE. I am uneasy inside my skin. I am not myself. I am besieged. And, as every person with a serious illness knows, this is simply the way it is, and I must keep finding ways to adapt and deal with it. And remember how fortunate I am.
* * *
I’m sorry for my tone. I received news yesterday that weighs heavily upon my heart.
I was scrolling through Facebook and suddenly, there was the radiant face of a woman I knew. It was Rana. The Facebook notice stated that she died two days ago.
Let me explain.
Rana was my French student four years ago. Born in Lebanon, she had lived many years in Kuwait before arriving in Canada and eventually Montreal. She was the mother of a beautiful girl who is now a teenager. She had a PhD in something related to nuclear pharmacology. She was an artist: a jeweler who also created works in which she combined painting, fabric and her jewelry pieces. She was a deeply spiritual person.
She was extraordinary. The company where she worked and where I taught French several years was very demanding of its staff, and so it happened once or twice that she was the only person in her group who was able to make it to class—which turned the latter into a private tutorial or, in our case, an hour and a half of one-on-one French conversation.
This is how I grew to know her quickly. In French, we would have said that we had des atômes crochus, a pretty expression that means that we instantly hit it off, that we spoke the same language (no matter what language each of us was using).
And then the contract ended, and I didn’t return to her company. But we remained in contact, on Facebook, and managed a lunch together one summer day. It was on that day that I realized just how beautiful a human being she was. Her life was not free of stress and problems. There was a scarring divorce that festered over child custody issues, and she had just moved into a new condo with her daughter. But Rana seemed to rise above the muck and remain just, true and decent. And always loving. It was also at that lunch that we discussed all of the things that lit us up; our shared view of life—its expansiveness, endless promise, and limitless possibilities to grow and love. We parted that day promising to make these meetings happen more often. We stayed in touch on Facebook.
Jon Naar, “Shadows of Children on Swings”, Munich 1963
But I never saw her again.
Yesterday, right after learning the world had lost her, I went back to Facebook to try to collect our years-worth of exchanges on Messenger, but her site had already been cleaned up and emptied out, and a new page, with a beautiful photo of her, opened recently, in preparation for her death, I suppose.
I left a message of condolences on her new Facebook page which is being curated by her cousin, I think. And then I sat with Rana here, alone, for a long while.
Rana succumbed to a cancer that had already ravaged her lungs and bones when it was diagnosed. I wish I could remember how long ago, but it was at least two and a half years. She had gone to the hospital with unbearable neck pain, and found out that a vertebra had collapsed because of a tumour growing there, that her tumorous femur was in danger of being crushed under her weight as well, and that her lungs were full of cancer.
I found all of this out after simply messaging her one evening—just to catch up on things. We immediately switched to our phones. From her hospital bed in Montreal’s Jewish General, she told me everything she was going through. I remember that her voice was full of energy. Her scientific-medical literacy made it possible for her to approach her situation calmly and analytically. She trusted in modern medicine. She trusted that she would receive good care, and that her pain would be managed. She believed her situation would improve.
I was careful about what I asked her and how I phrased things. I tried to match her energy and tone. We made plans to get together when she was well enough to leave the hospital.
Clyde Aspevig (b.1961) “The Evening Still…”
We never did get together.
I was diagnosed and I think, meanwhile, she was beginning to fail rapidly.
She’s gone now.
Yesterday, after leaving my message on her Facebook page (which was filling up with wishes and expressions of love and sympathy), I didn’t cry. Not right away. It wasn’t, it isn’t what Rana was about. Rana is at peace. I know this. And she is everywhere. She was so loved.
Later though, the weight of Rana’s death grew heavier and heavier and I knew that as soon as I said out loud: “My friend Rana died”, that I would not be able to hold back my tears. Simon was the first to arrive, and I told him, and then, once he’d held me and spoken kind words to me, I spent a while in the kitchen, preparing supper and sniffling. And I was with Rana in spirit.
At bedtime, a second wave of tears hit, and this time they flooded me. My mind was stuck, wondering what her last weeks and days had been like.
Rana. I know she bared it all with dignity. I know that she smiled too, when she could, because I feel sure she believed that she would be united with her mother and others she had lost in her lifetime.
I don’t think she made it to the age of fifty. A beautiful branch has broken away from the tree of life.
When things get hard, in months or years to come, I will seek inspiration from Rana who was light and life and love.
I suppose that today, of all days, it’s appropriate for me to scream May Day! May Day!
It wouldn’t help my situation, or make any difference though, would it?
I started chemo in late August 2018, which means that I’ve just entered month number 9 of chemotherapy (these days, “treatment” feels too much like a euphemism).
Yesterday, I went to have my 4th CT-Scan done at the CHUM (including the original diagnostic scan). Since I began chemo, I’ve had a CT-Scan every eight weeks—a requirement of this clinical trial. By that count, I’ve passed 32 weeks of being poisoned for the sake of survival.
Yesterday started off just after lunchtime in such a weird and inauspicious way. With my scan scheduled for 3 pm, I planned to go first to the hospital’s open eating area on the first floor, where I’ve spent hours this year, waiting for whatever was next. It’s a vast, windowed, very bright space with dozens of tables where people sit—including many hospital staff—to eat and unwind.
This time, however, before I had even reached the escalator landing, I could see that there was something crowding everyone (they all seemed bunched up) and creating shadow. When I reached the top at last, I was met by an 8-foot high, 25-foot-long puffy pink tube, with lumps and bumps here and there on its surface. This was the monstrosity that was responsible for making seating far scarcer than it should be. When I walked further into the hall and found a spot to sit (I shared a table with a nurse who was on her lunch break), I realized that the big pink tube was a shadowy tunnel that people were visiting. But what I felt when I read the signage in front of it…
It was a giant section of intestine, made to be strolled through. It was there to educate hospital staff and visitors about colorectal cancer.
Fuck. Really? (That IS what I thought) I mean…really? It was hard to see it as humorous. It felt more…ominous. As mental preparations for a colorectal cancer CT-Scan go, this was truly awful. And definitely unwelcome. And I didn’t visit it! There seemed no need to go see tumours and polyps up close and Godzilla-size.
Thrown off somewhat, I ate quickly and then went up to the 14th floor for a blood test that’s now required by Bristol- Myers Squibb before each scan: a simple embryonic enzyme test, which, I think, measures tumoural activity (my results have so far been good, dropping steadily, which is what the oncologists want to see).
My univein !
The only good, fat surface vein I have for blood tests is on my left arm. Just the one. There simply isn’t anything visible to work with near the surface of my right arm. This, as time goes by, will become a problem. My poor univein is beginning to harden, though up to now, the CHUM’s phlebotomists (drawing blood is an art!) say that it still has bounce (they say: Elle est encore rebondissante!”). But, because I knew that a catheter would be inserted into my champion vein for the Ct-Scan, I asked the nurse if he could perhaps use a vein on the surface of my right arm, one that Chantal, my research nurse and guardian angel, told me was big enough. He opted instead for a vein on my right hand. With his magic hands and a tiny needle, he managed to get what he needed. It was only when I entered the Tomodensitométrie area (in English, that translates as “computed tomography” or CT), that I felt pain and throbbing in my right hand. When the nurse installing the catheter in my left arm (in my plucky univein) saw my sore hand, she said: “Il vous a rupturé ça pas à peu près!” which translates to something like: “Whoa! He blew that one up good!”
There I was, back in an area I’ve written about previously, wearing a hospital gown, and not much else except my shoes and socks, in the company of close to a dozen others adults who looked about as attractive and gloomy as me.
But this, of course, is where it all gets so serious. And it’s when the culture clash between the worlds of medical professionals and the people they call patients is so clear to me. It must be hard to lead with your heart when the patients who stream through your department all look alike: gowned and pale, their education, work life and personal histories unrevealed. They, the medical staff, are so comfortable in their working environment and we, the patients, are anxious, and diminished, and longing to get out and go home. And the technicians who operate the super-high-tech diagnostic equipment are generally kind and polite and concerned that we fare well while inside the giant, noisy scanners and imaging machines, and tolerate the claustrophobia and the chemicals injected into us, while we lie there terrified of what these machines will tell the radiologist who will decode their data…
Yesterday, I sat waiting, in my gown, between a fifty-something man and an older, heavier woman, who gave off signals of wanting to be left alone inside her bubble. The man seemed content to sit in silence too. It makes so much sense: aside from each person’s disease or reason for being there, what is there to talk about? Apprehension was the elephant in the room and it was visible to each of us.
And then, the first woman was taken to her test, and another woman, younger (perhaps in her late forties), sat down beside me. We didn’t get to speak for long, because I was soon called, but in the brief time we had, I mentioned to her that I could see that this wasn’t her first scan, because she was sporting the same regrowth of grey-white hair that I was— though hers was shorter than mine. I just wanted her to know that I saw her as a sister-patient, that she had all my empathy.
Then she said: “And I’m going to lose it all again. My treatment isn’t working. It isn’t working And I have to start chemo again.”
It was such a heavy, meaningful, ominous thing to say, and as she spoke, there was still the trace of the smile that her face was meant to wear and that might otherwise come so easily to her…
My name had been called. What could I say? All I could manage was (in French): “We’ll see each other again here, with our beautiful pink complexions…” and then I was led off to the CT-Scan area.
What will her scan show? What will mine?
I should have taken her in my arms and just held her.
On Tuesday, April 15th, Notre-Dame de Paris, one of France’s greatest buildings and symbols, burned.
As is always the case in the 21st century, it was a catastrophic event that virtually everyone, everywhere, could watch. A disaster witnessed by human eyes on a planetary scale.
Human responses to its destruction by flame varied, people fitting the images being transmitted by every means possible to them into the critical context that made sense in their reality, whether it was religious, spiritual, political, cultural, economic, aesthetic…
I found it very hard to watch as the flames tore at the building, devouring it; billowing out, fed by the combustibles within and the oxygen provided by the ambient air. I wasn’t able to watch those scenes for very long. Something truly awful was happening in Paris, again, and for an instant, my thoughts veered to the possibility that this was one more nightmarish terrorist action, but they didn’t last. The day may come when extraordinary gathering places like the Dome of the Rock, or Hagia Sophia, or Notre-Dame de Paris fall to the same impulses that are tearing humans apart in the early 21st century, but surely, we’re not there yet.
It appears that, at least in the case of Notre-Dame de Paris, we were not.
I guess that by now, you’re taken aback by this post. What can this event possibly have to do with the very small, personal story of living with cancer that I’ve been telling, bit by bit and week by week, for the past 9 months, at this blog?
The impulse to write to you this time comes from a memory that was evoked as I watched the beautiful old cathedral suffering so much damage.
I’m not a traveler. I haven’t seen very much of the world with my own eyes. But I have seen all of Canada’s provinces except for Newfoundland (I’d love to correct that) and the territories to the north; and I’ve seen large swaths of the United States. I’ve also been to England (in the summer of 2015), and France (in the summer of 2012), each time, to visit one of my sons.
While in France, Simon, my friend Louise and I were based in Montpellier, where Simon was doing post-doctoral research. We branched out to Carcassonne, and also made sure to set aside three or four days to see some of Paris. I think we may have been a bit unlucky because we hit a heat wave, with temperatures between 31-34 Celsius that made almost everything exhausting and unpleasant (we spent most of our visit to the Louvre in the basement, trying not to pass out).
Then came the day we set off, on foot, to l’Île de la Cité, in the centre of Paris, on which Notre-Dame de Paris was built. It was the tourist season. There were crowds everywhere. The lineup to visit the cathedral had been forming for hours, the long, serpentine gatherings of people stood right out in the baking sun, waiting, so we decided to begin our day by visiting the adjacent attraction, which was a guided exploration of the catacombs that run under the Cathedral grounds. We were so happy to find ourselves out of the sun and hidden away underground, where it was cool and quieter.
We emerged refreshed and ready to join the lineup for the cathedral itself. It seemed to move much faster than we had imagined and soon, we stepped out of the heat and into the fresher, darker atmosphere of Notre-Dame.
I had no expectations going in. None. It was packed. There were people everywhere, bunched together, moving around with no sense of place or of decorum. They were probably just happy to finally have something to do and see. It was all so strangely anti-climactic.
And then, moving further in, I looked up.
To the vaulted ceiling which my eyes followed up and up to the roof; to the rows and rows of breathtaking arches, so beautiful, so impossible…
And I started to cry. Not just a few wet sniffles. I was overtaken by emotion so intense and so full that all I could do was cry and cry and cry. The tears spilled out of me. As I continued through the building, pushed along by people, I felt utterly filter-less. Defenseless. What did I feel? What was this emotional spillover all about?
I remember looking at the vaults and thinking of the people who had built them, painstakingly, at tremendous personal cost. Hundreds and hundreds of lives over centuries. Generation upon generation, dedicated to a single purpose, day after day. The vaulted ceiling was so beautiful. There was such presence there.
While I no longer adhere to any specific religion, I am a spiritual person and I think that I was also responding to the presence of the numinous in that space.
I don’t know what the human soul is, or whether it exists, but I know that on that day at Notre-Dame de Paris, I was immersed in emotion that I can only call soulful.
What caught me most off guard on Tuesday, when the images of the fire began flooding the internet, was the remembrance of that outpouring of tears on that day in 2012, and the recognition that moments like this have been part of my life over and over since my cancer diagnosis.
You see, one of the side effects of my new life with cancer is the sudden and surprising outpouring of tears and the constriction of my face and chest that accompany them. This has been happening to me from almost the very beginning. But they’re rarely tears of sadness, though I have those too. No, these tears are just like my Notre-Dame tears. They’re released unpredictably and they’re difficult to stop. I’m almost always with someone, in a conversation that, for whatever reason, veers to something small, or perhaps more substantive, that is just honest; true; real; and which becomes connected—even if only in me— to the ephemerality of my situation, to the essential nature of human life, to the deepest roots of love. It happens while I’m speaking. I just seem to melt into tears.
Most of my entourage knows that I’m fine. I say that I’m not sad, but that I simply have no more filters. I tell them that I realise that there’s no point trying to bury my tears. I can’t. They just flow, and seem to do so only when conversation has reached a soulful place. Even if the exchange is about someone else, my filters can fail. The membrane that separates me from a river of emotions is foundering.
These moments are like my experience inside Notre-Dame de Paris. They’re moments when all of the fear, compassion, pain, worry, joy, wonder, gratitude and love are flowing one into the other, and I am overwhelmed.
Why hold them back? My life has come to this. To times when what I’m feeling is the essence of my existence. I think my tears appear when words are insufficient.
Spring has sprung a leak here, in Hudson, but no one’s complaining because winter has been chased away. The ground around the house is covered in a thin, tired old layer of dirty, disintegrating snow covered in old leaves and small twigs and branches from the trees (I suppose this is what pine detritus looks like—maples just wallop everything around them with large, heavy old branches that break free as they succumb to age and the damage done).
After a beautiful sunny and warm Sunday, Monday has brought rain. But I have Christian here for the day—for the next three days, in fact—and that brightens everything. And I need some of that light and lightness of heart.
I cried myself to sleep last night, or tried to, but wore out my eyes with all the tears and made the astonishing discovery that the rivulets of tears were so full of healthy materials that when I stopped and picked up a book, I could see everything clearly. EVERYTHING. Eight and a half months of chemo’s ophthalmic side effects washed away (they have, of course, returned this morning, and my vision is as goopy and inadequate as usual).
I had the blues. A somewhat mild but pervasive case of them. Their sadness has been niggling me for days. It’s been more than nine months since we moved in here, and the same amount of time since I’ve been living with the knowledge of my cancer. I’m now seasoned in the dynamics of such a life.
We’ve all heard of “two steps forward and one step back”, and while this semi-optimistic description of hard-won, slow progress resonates, it doesn’t capture life with cancer, or, to be more precise, the mind’s meandering assimilation of the reality of it.
I’ve come to see my efforts to live with cancer as a self-erasing pattern of advance and retreat, and it’s getting to me. I want to try to describe it to you. It’s of such importance, this thing I’m trying to figure out.
In the first place, in my mind, cancer is OF ME, but it’s also NOT ME. It’s separate from the person I am, the one who lives inside this skull and body. I AM NOT MY CANCER; and if this is so, then my task is to learn to co-exist with it. To be with it, as serenely as possible, to know it’s there, but also, to move away from it, in a constant, repeated ebb and flow, a forward and backing away movement, that allows my conscious mind to distance myself from it, so that I can live outside the uncertainty that it has splashed all over my life: so that I can find respite from the sadness and pain of imminent loss that darkens everything if I let it; so that sometimes, I can think and feel beyond the aches, pains, and alterations of my body that complicate my days and mess with my morale, isolating me from the joy of life and of being with others.
Cancer pulls and repels me ad infinitum, and this tide-like dynamic isn’t about progress. In some ways, it feels more like breathing: in and out—being sucked in, and then coming up for air. Or like sliding back and forth between two lives: the first, the one that extended itself far into the illusion of a future full of the promise of aging; and the second, the reality of a life occupied by certain, daily struggle and my far more imminent death and separation from the future of my loved ones.
How does this play itself out in my daily life? In a list of random thoughts and ways. Here’s a sampling:
The seeds of love are sown among human networks every day. Yesterday, I was with Penelope and Graeme, my 7 and 5-year-old grandchildren. Penelope was telling me about her swimming lessons, and what she does in grade one, and how the ballet school she attends has asked her to double or triple the number of weekly classes she takes because they want to move her to the advanced level, and how she’s willing to start with a one-week ballet workshop this summer and then, well see…
And her brother Graeme sat next to me as we read the Pokémon encyclopedia together, identifying the evolutions of most of the creatures, just an hour or so after we had returned from shopping, all of us together with his parents, for his birthday presents (because he turns 5 next week), during which he had been so reasonable and showed not a glimmer of greed or selfishness…
And at one point, with P&G on either side of me on the couch, I took each of their hands and pressed them together over my lap, to show them that Graeme’s were already the same size as his sister’s. And it seemed like a good time to talk about such disparities, and what they might mean, as neither was sure whether it was a good or bad thing that sweet little Graeme has large strong hands…
And during every moment of these hours spent in such perfect company, I carried inside me the feeling of having been prematurely aged by cancer, and of not being as sure of myself as I once was with them. Cancer was there, in the room with us. It heightened my sense of separation from them because it took up space that has its own weight, its own gravity.
Several months ago, while watching the movie World War Z with Simon and Christian, in which infected, ravenous zombies are terrorizing the whole world and attacking every person in their path, I learned that I would have been spared. Sick people like me, with cancer and other diseases, were left alone by the zombies. Christian and I, upon realising this, looked at each other and smiled, even stifling a giggle. Quickly though, the other message of this scene hit me, then my sons: whether by disease or design, inclusion or exclusion, being culled is still being culled.
First, there was escape into a movie, then cancer pulled me away again.
I still have time to read. And I’ve been reading all over the place, trying to catch up with blogs posts I write for the Pointe-Claire Library and simply enjoying escaping into imaginary worlds. But reading has also provided one of the clearest, smoothest paths to approach cancer and dying, and I have found myself eagerly following it. It’s where I’ve most felt the sliding back and forth between lives and needs: between cancer and cancer-free thoughts.
And so, despite everything I’ve written here, I do approach death and dying willingly, in ways that work for me. I must prepare. Denial is impossible for me. That’s why I’ve just picked up Maggie O’Farrell’s I AM, I AM, I AM, Seventeen Brushes with Death, which is getting rave reviews, and have just ordered Jayson Greene’s Once More We Saw Stars, in which he shares the story of the death of his tiny daughter, just a couple of years old, as the result of a freak accident.
I don’t find anything morbid in these books, nor do I find them depressing. What they allow me to do is to approach death over and over; examine its shape and its impact on those it touched; learn from the person who is dying or, finally, observe death’s survivors.
Every book I have read about death and dying so far has shown me families of survivors who are able to speak of their lost loved one with joy and still such an abundance of love. And this helps me to stay on the track that is leading me towards death knowing that it’s possible for me to leave life without causing irreversible suffering. The only prize worth keeping an eye on. Life goes on!
Every day, several times a day, I receive short quotes from an app named We Croak. Simon had originally heard its creator talk about it on CBC Radio, and I loved the idea of being reminded of my mortality at random daily intervals. This was many moons ago.
And then there was my cancer diagnosis. And when the first few quotes buzzed in on my phone, We Croak suddenly appeared to me in a different light. It was, briefly, macabre, and I wrestled with the impulse to deactivate it.
It still reminds me several times a day that I am mortal. Sometimes it does this philosophically, sometimes poetically, sometimes medically, sometimes religiously and sometimes brutally.
But I kept it as just one part of this path that I walk along now. It’s a path that backs me away from my cancer for essential, replenishing and escapist periods of time, and also leads me toward my cancer, from which I still have many lessons to learn.
This is the quote that buzzed on my We Croak phone app just minutes ago. It’s everything I’ve just written, delivered clear as day.
A dying person may book a vacation you know they will never take, plant a tree, buy a car, and shave their head. Make room for rage. Make room for clarity and insight, composure and acceptance, and throwing out a bedpan across a room.” – Sallie Tisdale
May I continue this movement away from and towards what my cancer comes to deliver.
At breakfast with Christian and my friend Gail, yesterday, the conversation turned to memory, and what exactly memories are, and what they do for us, and what they mean to each person’s identity and how we think of ourselves: their weight, their influence…
We spoke of a common desire in this world to dig into the past, to search our childhoods for the trauma, for the pain, and also for those formative experiences that may still not sit easily within us, with which we may still not have made our peace.
And Christian likened past experience and memory to a great tree with so many ramifications that it’s impossible to know where each is ultimately leading to, or emanated from, or how they all come together from a trunk and its roots…
And Gail, who is a Zen practitioner, smiled at that image and said that she had been reminded many a time that to look too long to the past is to get lost inside your head because, in truth, there is only ever the present moment, and though we carry with us imprinted memories of our own past, we can only every really BE HERE, NOW. There’s no going back, and the future is as intangible as space. She likened memory to the vapour trail we see tailing high flying airplanes, which is very thick where it first emerges, but which thins till it disappears off into nothingness.
Unpreservable.
At 60, I’ve stored enough memories to see the truth of both of those images, and to realise that by and large, I remember just enough to remain my continuous self, someone who walks in the world with a personal identity, i.e. I adore my children and grandchildren, I’m Canadian, a Montrealer; the people I love are…The foods I enjoy are…During this past year, I’ve moved to a new town, into a new home…I’m very sick…
But I also know, now more than ever, as I grow older, that the memories we hold onto with an iron grip are really the pain. We envelop those in such a tough, protective shell that sometimes they become virtually inaccessible to us, lost in lock down. It’s the memory of pain that seems to have the longest shelf life.
* * *
I’m just reaching the end of Philippe Lançon’s 2018 book, Le Lambeau (a word which means, in the book’s context, a flap of flesh). Lançon is a writer/journalist who survived the Charlie Hebdo massacre in Paris, January 7th, 2015. He was in the conference room at the moment of the attack and had the lower part of his face shot off, as well as sustaining damage to his arms. He was left disfigured, and suffered two years of hospitalisation, of treatments, surgery, more treatments, more reconstructive surgery, and still more treatments and pain…
It’s a gorgeous and profound five-hundred-plus page book, that covers the actual shooting very briefly, but lingers for a very long time on the life that came next. The survival. In French, the meaning is deeper, because to live is vivre, and to survive is survivre, words which, for Lançon, also refer to his two lives: the one before the attack, and the one after. Ma vie, et ma survie.
What Lançon examines with fascination, precision, and disarming honesty, is how the man he was for more than fifty years, and the life he had, have become almost an afterthought in his new present. He isn’t so much describing a disconnect between his former life and his present “survival” as he is eloquently making a case for the former’s irrelevance.As I’ve read through his book, Lançon has taken me from the somewhat unconscious, automatic life that was his before January 7th, 2015, to one that was stripped down to the bareness of hospital rooms, pain, drugs, drool, drains, nurses, doctors, surgeries, opioids, fear and dependency.
And what struck me, all the way through his account, are the parallels that can be drawn between his experience and that of anyone who has suffered the violent or sudden shock of a life-threatening event, including war: a physical attack (as in Lançon’s case); a medical diagnosis that promises suffering and eventual death, or any unpredictable occurrence that moves a person’s life out of the public world of home, work and freedom of movement, into medical care and the enveloping necessity of hospitals and treatment.
In fact, I’m shocked that I not only feel empathy toward him (who wouldn’t? his tragic story is one of martyrdom), but that I also understand so many of his reactions, such as his progressive withdrawal from the world outside (this is a writer and journalist who has lived and travelled in Romania, the Middle East, South and Central America, all over the world, in fact) which took the form of not reading the papers or watching television news; seeking refuge in music, mostly Bach…almost always Bach…for hours and hours; feeling the burden of having become a patient—the weight of that dependency; veins that seek only to escape the piercing needle; the alteration of the physical self and the mirror that returns such alien images; the desire to remain cocooned…
Philippe Lançon
Philippe Lançon
I think of myself, moving between our house and the CHUM, and how it’s becoming easier to feel comfortable in this new, smaller life of mine. I realize that I, too, have become reluctant to take on the news of the world at the rate I did before learning I have cancer. My desire to listen to music has not evaporated, but it’s often music of a certain type—all of Max Richter, for example—largely instrumental music that is expansive and elegiac, that fills up the whole house when I’m alone and which envelops me in the emotions that I feel and want to keep feeling but cannot always share with others; looking at myself in the mirror, the way Lançon did and certainly still must, and accepting anew, each time, that the person being reflected back is the one who is here, now, and that any other incarnation is gone—lost to the past.
For many of us, the sense of awareness of a “before life” and “after life” will only develop as a result of aging. Memories will be explored, evoking both a sense of loss, appreciation, and the sense of continuity. But for the many others, the acceptance of la vie and la survie, of two distinct lives created in a moment, and divided irrevocably, will mean leaving behind the unpreservable trail.
For many, first there was life, and then, survival.
Not long ago, I was with a bunch of people I love. We were celebrating a birthday and it was smiles all-round.
One of the guests, who has been struggling with serious and rather frightening health issues, had just arrived, and mentioned the eternity it seemed to be taking to get the proper medical tests and procedures done here, in Quebec. I couldn’t help but say: “Well I’ve been so lucky at the CHUM and received such good care.”
And my interlocutor answered right back: “Yes, but you’re terminal.”
I feel like I should leave a space on the page. It represents a pause. How time seemed to freeze just long enough for me to gasp silently.
Right up until that moment, I was feeling confident and upbeat. In social situations, it isn’t ever possible to make my cancer disappear. Time is required. People have to get used to me and my short white hair (but with blue eyes!), and ask their questions about how things are going in chemo (which I appreciate), and then, the cancer thing is allowed to go sit in a corner and take a break so conversation can move on—until someone calls it out again (sometimes that person is me).
TERMINAL. It was the first time that word has been used around me. And though it was spoken with not a micron of malice, still, it made me wobble, to have it thrown at me like that. It was like being splashed unexpectedly with black paint at super speed. I felt tainted. It reduced me to one of the doomed soldiers of the gaunt chemo army.
This all happened in a split second. I remember thinking, in a shaky inner voice: “But we’re ALL terminal.” (that’s the deal in this one life we have).
I haven’t heard the adjective used at the CHUM, or on my blog page where so many cancer sufferers and sympathizers come to leave comments.
* * * *
I’m a word person. I think it’s the second time in my life that I’ve actually said this in a formal way. The first time was in a yoga weekend workshop, years ago, when we were asked to repeat a mantra over and over and I said to our instructor: “I’m a person of words, and I’d like to know what it is that I’m saying.”; and he answered with a “Pfff! A person of words” and a backhanded swipe at the air, meaning the sounds, the vibrations of Sanskrit are what matters, and understanding wasn’t necessary. That may be the day he lost me. Right at the beginning.
Language is my passion, my fascination, my friend. So, it isn’t a surprise that writing this blog has been such a hopeful, buoyant experience.
Language has its own alchemy. It transforms words into love, understanding, fear, wisdom, confusion, suffering, compassion, anger, motivation…and hope. During my journey with cancer, it has been a universal elixir, allowing me to connect with people all over the world.
The oncologists and other members of the medical team (radiologists, chemo nurses, pivot nurses, pharmacists, psychologists…) with whom I’ve established such crucial relationships since last summer, have perfected the language of their trade, and the very best never falter.
Even the staging of my cancer was done with care and circumspection. Once “Stage 4” was determined, it was almost never used again in my presence. When I sit in front of one of the research team’s oncologists, every second Monday morning, the calendar is discussed—my chemo dates and upcoming blood tests and scans—but I don’t know that we’ve ever talked about finalities.
There’s a softness with language there. Those who work in oncology have learned to speak that way. They don’t say exactly when my chemo will end (there’s a certain, immutable number of cycles I must go through in this clinical trial, but some have been interrupted because of side effects and so I’ve lost track), but they carefully walk me through each one. They won’t say what treatment(s) will follow chemotherapy because they know to wait and see what will be required then…
When you focus on NOW, you don’t need words like terminal and stage 4…but you do find yourself using the word chronic.
My hope is that when my chemo is done (which I think will bring me to next fall), I will have reached a terminal of a different kind, where I will hop the next treatment train that will, I hope, allow me to travel a good distance more. I don’t know how long my trip will be, and don’t expect my medical team to even attempt a guess.
This is, in fact, how most of us live every single day, travelling as best we can, though cancer patients may be the most grateful of all the passengers.
Though it feels like I have to just hang in there through chemo, the fact is that I can’t and shouldn’t exist in some kind of holding pattern. I have to go and live as fully as I can.
This may be a peak. How I feel right now could be the best I’ll ever feel again…
I can’t say—I don’t know.
What I know is that there’s the possibility of so much more pain; of pain so pervasive that life narrows, and you enter a tunnel and for a while, it’s as though that tunnel has no end.
Someone I know, care about and identify with effortlessly, is suffering in this way right now. Or she was all day and night yesterday, when I could think of nothing else. I won’t name her. Her torment is as real as it is private.
The cause of her suffering is the cancer that has invaded her bones. Yesterday, she reached the point where her morphine no longer made a difference. I wasn’t with her, but I know that she is tough, and willful, and that her agony had to have been…unspeakable.
Knowing that someone is suffering the way she was, and has been for days, turned me inside out. Lying in my bed last night, I felt connected to her through invisible fibres that functioned like nerve endings.
Those who love her are all tethered to her pain, and every thought/prayer sent toward her also pulls on that part of the tether that is connected to us.
It reminds me: do not take a second of wellbeing for granted.
There is suffering everywhere—cancer, disease, are not its only claim—but this pain has a face, an identity known to me and everyone close to her; and that’s why it’s so easily sensed by all of us.
What can I do? What should any of us do?
Be mindful of that suffering. Don’t dare push it away when that connection is painful. Share it in spirit. Be present to it. Ache for the one suffering. Bear witness to it. Send love, send grace…
And then yell and howl publicly in proxy pain, till the palliative medical team gets it right. Till the loved one’s nerve endings quiet.
There IS a cessation to suffering. At the end of that tunnel is light and deliverance.
It’s a cold Sunday morning and I’m sitting in what’s become “my spot”, that is, at the dining room table that looks out onto the back yard. It’s beside the sliding door, and I favour it because regularly enough, it’s here that a warm beam of sunlight enters the house, and for an hour or more, I have not only the light, but its rays upon me.
I’m able to spend lengthy stretches of time here. When Simon and Christian are off at work, it becomes a quiet, open space. There’s just me and my laptop, which, given the circumstances of my life, is the door that I can throw wide open to the world—despite the side effects of chemo I’m dealing with on any given day—and enter it, travelling as far as I wish, messaging, writing to or chatting in real time with the people I know and love, but also, thrillingly, with those I have met through my sickness and my blog, leaving my body behind. What would my view of life be like without this aperture?
(Oh! I’ve just been interrupted by the song of blue jays up in the pine trees in our yard and I even spotted one. It’s the first bird cries I’ve heard in months. They’re not the sweetest species, but on this cold winter afternoon, their vitality’s welcome!)
As the weeks and months have passed, I’ve never been more aware of the importance of this screened device that I type on and use relentlessly to connect with what otherwise lies outside my reach. Winter has also placed walls between me and the world as surely as my cancer treatment has.
Twenty years ago, I would have been dependent on the telephone, that very narrow channel of communication. I could have exchanged in real time, certainly (though I would doubtlessly have left innumerable messages—it was the heyday of answering machines), but along such a thin line of human contact. Banter mostly. Voices filled with attempted cheerfulness, worry, love, concern and the mundane news of everyday life that would have been my interlocutors’. But never seeing the faces that might have betrayed much more—a richness of pain and love.
On my laptop, I give and receive as lightly, as impulsively, as much as I choose or as much as I’m invited to offer. Internet is my means of travelling, and this year especially, it has taken me beyond what I thought possible. I think it’s saving me from the despair and depression that I might have fallen into.
Writing, especially, has come to my rescue. While I’m caught up in it, there is always an exchange happening between my thoughts, and you. Without you, writing would quickly lose its meaning. I’m sure of it. I’m not a diarist. I write pages that may or may not be read by you but are nevertheless meant for you…whoever you are. You were and always will be the people I know and love, and also someone I know less well but would like to know better. But I’ve also come to realize that you may be someone I just met on one of the myriad, tiny bridges of words built on my blog. I barely know you, and yet you have left behind words of appreciation and mostly, a piece of yourself.
My warm corner
2. SHIVERS
Wednesday, February 6th, 2019
Like so many chemo patients, I’m afflicted with shivers. They come and go in waves with a constancy that assures that they’re always a factor in my daily life.
It isn’t a coincidence that the sunny corner where I sit and write is directly in front of an electric heating panel. This is one way I’ve found to postpone the inevitable—at least from fall to spring. It’s as though any degree of cold in the ambient air finds me. It works its way into my feet despite the fact that I wear huge, thick socks bought at Chapters (the fuzzy knee-high ones) and l’Équipeur (the thermal ones).
This morning, I’m still in my soft pajamas and super-socks but, sensing this wouldn’t be enough, I’m also wearing a large, loose Carraigdonn 100% merino wool sweater, made in Ireland (I checked the label), that’s my mum’s. A previous chemo patient herself, she came to my rescue with it last fall, knowing it would be needed. I thank the sheep who contributed their miracle, all-weather wool to it. It’s like putting on a heated woollen tent (merci Maman xo).
Shivering reminds me that my body is under siege and that it’s having to expend energy fighting on many fronts at the same time, the chemo killing parts of me while all of my body’s systems kick in to repair, restore and remove the wreckage. It reminds me of my frailty and vulnerability; how quickly my battery loses its charge. It makes me feel old and compromised.
My shivering is a visible sign that my sons pick up quick as lightening, filling the den with blankets and covering me up while we watch Netflix together. Simon also mastered the use of the slow-combustion Napoleon stove that’s in the den (which is still allowed in Hudson), where with a wood fire only, he has succeeded several times in raising the room temperature to a thermonuclear 30 degrees Celsius. The irony is that once I’m under those blankets and all heated up, it’s almost impossible for me to get up and go to bed…such is the shock of re-entering other, cooler parts of the house.
But the shivers and my circumscribed life with chemo have allowed me to luxuriate in the most delicious and self-indulgent ritual: the late morning bath. You see, showering is rough. No matter how hot I set the water, or how warm the bathroom is when I enter it, I can barely bring myself to pull open the shower curtain and step out to face the wall of cooler air that greets me once I’m done.
But a bath…Ahhh…I fill it right to the overflow opening, lie down in the hot water and marinate till every calorie of available heat has migrated into my body. This ritual came about as a result of the 5FU infuser that I wear from Wednesday chemo to Friday afternoon. Bathing was one way that I managed to wash without getting the infuser or the port-a-cath in my upper chest wet. The fact that I was as warm as a foetus while bathing was a sweet discovery. Until now, I don’t think I had ever taken a late morning bath. Lying there, I’m reminded how alien my life has become; and then I try to savour every sensual moment of the experience. I’m sick. I’m in treatment. My present life is almost unrecognizable to me. And yet, to be in the very warm water—in a quiet, safe and peaceful space where I can close my eyes and simply breathe, or else let my mind wander and start writing things in my head, or face my own, private fears and truths—is a very fortunate oasis, but also an indication of my life’s contraction.
Detective and Mystery novels at home
BOOKS
When we first moved into this new house in Hudson, we—Simon, Christian and I—brought roughly a hundred “smallish” boxes of books, which we stored in the basement while we settled in. But the idea, The Plan, was always that we would turn the living room into a library—a dedicated reading room—and merge our collections.
It meant building ten or more floor to ceiling IKEA bookcases (Simon’s doing, with his friend Isabelle), and then systematically emptying every box, sorting through their contents and placing the books in some kind of order (we settled for detective and mystery in one corner and everything else—fiction and non-fiction—together, alphabetically, by author, along the main wall). Just days before Christmas, the shelves of our reading room were finally almost fully garnished.
Some of our books
It’s a beautiful room, and our favourite. It’s the room that we all imagined when we spoke of moving. With very few exceptions—one being all family photos and paintings, but especially photos of my grandchildren—books are our most beloved possessions. I’m not exaggerating when I say that books, in ways too numerous to count, have made us, and provided us with a third common language.
Since my “liberation” from normal life and work, I’ve caught up considerably in the reading department, mixing novels and non-fiction. Reading’s been a great consolation—or should I say compensation? But the shadow of chemo has reached this part of my life as well, as once again, good ol’ 5FU, the chemo drug that seems to have it in for me, is affecting my vision by drowning my eyes with defective tears, then drying them out and irritating my corneas, to the point where the headlights of cars at night appear to be coming at me like quasars, and even in daylight, everything I try to read (including this laptop screen) is blurry. And despite the assortment of drops I use, my vision seems to be getting worse.
Quasar
I won’t give up reading, even if I have to use a magnifying glass. Books are other worlds, other people, other voices, other’s dreams, other’s stories. Book are truth. Books are a shelter and an escape from our own pain, even if only by leading us into the suffering of others. Books are joy, and lightheartedness. They are wisdom. They are the repositories of billions of word bridges to each other.
Having time to read during my life in treatment gives me solace. I won’t give up books.
Not too long ago, as I was thinking of this piece and admiring the lovely library right here, next to where I write, I realized that there are still so many books on the white shelves that I haven’t read. Some come from Simon and Christian, but many are books I bought myself, after seeing a great review or wanting to read more of a writer I’ve just discovered and loved. So, I acquired them, and they are my trove. Our trove. I’m not sure how many they number in total, but there must certainly be fifty or more of them…perhaps as many as a hundred or more…
The question that struck me and that has haunted me since is: will I have time to read them all? Amongst all of the books at the library and those being published every day, those we have here represent such a small proportion. But it’s possible that I will leave many of them unread. Counting down my days in this way is dark, I know, and yet…and yet there’s also something immensely comforting and even subversive about measuring my lifespan by “books read”. As though I needed the motivation. [insert my smiling face here]
I got my second scan results, once again, through my sister-in-law who is a radiologist. She received my email at the beginning of her vacation (she doesn’t—can’t—take nearly enough time off), and promised to let me know how things looked as soon as she got back. When she did, I received a very brief email stating that things were “stable”: no new lesions, no growth of existing tumours. STABLE. I immediately replied, asking if that meant that nothing had shrunk, she replied again: yes, stable.
After processing her words a bit longer, I felt myself sliding down into a gutter of sadness. Of hopelessness. It was so precipitous, it was almost like the sweeping downward movement of a rollercoaster.
So much for my bravado. My morale is wobbly and vulnerable. My mind was filled with a frantic salad of thoughts such as:
– “Stable” means the drugs are (already!) no longer having the desired effect on the tumours/
– “Stable” means the beginning of the end, because if the tumours aren’t shrinking anymore, then the second we stop treatment, they’ll spread everywhere/
– “Stable” means the cancer has adapted; when I got the first scan results that were so favourable, there was a brief period when I thought: “Maybe I’m one of those people who will be “cured”, against all odds, of their stage 4 cancer. But I’m not./
– Maybe I’ll be dead in a year…perhaps two years…I won’t be part of the future.
I was hurtling down a steep incline, having lost sight of all of the answers to the question: What am I afraid of?
Like mountain climbing when, after a near catastrophic fall, you struggle back up to where you set your carabiner, and you see that you’ve moved well beyond chemo base camp, and that the stakes now feel even greater.
Then I thought to go online and just look at what the American Cancer Society has to say on the matter. I found what I was looking for under the heading “Managing Cancer as a Chronic Illness”. I read through the sections several times and each time, it was like pushing my mind’s refresh button. Each time, things were slightly altered.
I think that I’ve arrived at a crucial place: I must now accept that stage 4 cancer (barring a medical miracle) is chronic cancer—if you’re lucky. If it doesn’t spread like wildfire. A cancer that you can live with for a while (…to be determined). And living with chronic cancer means several things, including the fact that the life that you had before you were diagnosed is GONE. It will not be resurrected. GONE. Got that?
This was so from day one but I hadn’t yet understood and absorbed it.
Amongst all of the daydreams that sweep things back and forth in my mind was this notion that perhaps, if I was very, very lucky, perhaps one day this life I have right now would all be gone and in its place, my old life—the one that contained my work, my physical strength and stamina, my greater independence, my ability to travel, and the plans I shared with my sons about the future—would return. That I would have a life after cancer.
I know differently now, and should have sooner, except that, apparently, my mind relinquishes its patterns reluctantly, and holds onto its schemas the way very small children cling to their parents. I live and hope to keep living with cancer. That’s my new narrative.
Time is breaking down my resistances, and I can now see that I will be able to live with cancer for many months and, perhaps, years. This means a life lived close to hospitals, to medical care, to drugs and treatments. Regular medical intervention and supervision of my cancer and health, till I die. Freedom within those parameters.
This all coincided with bad news we received. Heartbreaking news, concerning a close member of our extended family; someone we haven’t known all that long but love deeply, who, at 53 years of age, has also been diagnosed with stage 4 cancer of a different type, but who had the news thrown at her in a manner I consider violent and without compassion.
These coinciding events—my scans and her scans—sent me reeling, creating such a mournful feeling in me. I have lived seven more years than she. How can I not feel rent by this news?
It seems as though there will always be broken pieces to pick up and make room for in the mosaic of my life.
Yesterday, I was back at the CHUM for my routine pre-chemo tests, and spent a while with my oncologist, Dr. Aubin (whom I’ve mentioned before), who heads the clinical trial I’m participating in. I was waiting to see her before writing any of this to you.
She greeted me with a smile, and a cold, which she thinks she caught during her flight back from San Francisco where she and her team were presenting their work and findings so far. She was full of enthusiasm about the outlook of research in her field.
She examined me, and then we discussed my recent scan results, and when I mentioned that I was disappointed, she looked at me and said no, no, that she was very happy with the results; that the cancer is being controlled and that there was, in fact some modest shrinkage, and that all was well. That these sorts of fluctuations were to be expected. And she said it all with a broad smile, so I believed her, and told her that I have finally understood that my disease is chronic. That I know what this means. And she nodded, and smiled.
Before we parted, she said to me that working in oncology is a real challenge, but that patients like me made things much brighter.
It’s hard not to feel buoyed by such words, and so I shall try to knock some sense into myself and repeat to myself that the future is unwritten, and I shall try to narrow the swings of the pendulum to which my hope is tethered.
I’m back at the CHUM today, after an almost month long hiatus from chemo. It was an unplanned winter break. It felt a little like playing hooky, like an unexpected escape, like getting away with something.
But clinical trials don’t let you off the hook for very long, and today, it’s back to a full dose of reality: pre-chemo blood tests, a visit with Dr. Aubin, the chief oncologist involved in this trial (a young, petite, brilliant woman who has been wonderful with me), and SURPRISE !, my second CT Scan (the study requires a scan every 8 weeks).
I didn’t know this was on today’s calendar. This serious return to reality is unwelcome.
I should feel optimistic; everything so far has indicated that my body’s response to my treatments is positive, but I would have liked to coast on that feeling a while longer. There’s a whisper inside my head cautioning me to prepare for the possibility of disappointment.
What would disappoint me? I have to think about that.
(I have lots of time to do so: 4 hours in fact, because it’s 10 am, I’m done with Dr. Aubin and my scan is scheduled at 2 pm)
—If my tumours have recovered and even grown, I will…I will…
I can’t complete that thought.
It belongs in the Do-not-go-there-until-you-have-to category. The place of the unwritten future. May it remain banished there.
The CHUM, yesterday
—If my tumours have shrunk a lot less than on the first scan?
Yes, this would definitely disappoint me, but it seems quite plausible, doesn’t it? My body has been adapting to the poisonous drugs invading it; surely the tumours are pursuing their own survival strategies?
When you have cancer, things get real very quickly.
The holiday is over.
But you know what? Almost 5 months into chemo, I’m not frightened the way I was before it started. I live more comfortably within my life’s new landscape. Forward momentum means very little to me now.
What’s just bubbled up from my memory are images—like footage—of all of those summers of my childhood, when we would pile into the car with a trunk full of suitcases, and a cooler full of food, and off we’d go, on vacation, usually eastward, spending hours and days in the car, my sisters and I seated in the back seat, sometimes with our grandmother; my parents in the front with one of their daughters wedged between them if grand-maman was aboard, watching cars whiz past us, in both directions of the Trans-Canada highway, and the scenery along with them. Whoosh! Whoosh!
That’s how my life has felt, for the last decade at least: me speeding through the days, and rarely in the driver’s seat, constantly monitoring the passage of time and feeling it running out…
Cancer brings the stillness of a dropped anchor.
January 15th
What struck me yesterday in Radiology was how sick people were. So many were rolled into the CT-Scan and MRI area in gurneys, that I lost count. One older man could barely stand, but still tried to avoid using the wheelchair provided for him to move about. He sat very still while having a catheter installed in his arm. He couldn’t speak, just the faintest whisper was possible for him, because there was some wound or incision in his neck. But every single one of his breaths was audible as he shuffled to the room he was called to.
I remember my first scans well. On that day last July, I was to have the first of my two diagnostic scans: the MRI and the CT-Scan—those that ultimately revealed the advanced stage of my cancer. I was still new to the stages of malignancy, to the CHUM, and to the hijacking of my life by a disease. On that summer day, waiting seated along that same wall where I found myself again just yesterday, with a good half-dozen other patients, I felt and looked like the newbie. I felt younger, and vibrant. I could still smile and act relaxed. But right next to me was a woman at the other end of the line. She made eye contact with me immediately and I could see how much she wanted to talk. She may have been only 5 or 6 years older than me but she was ancient by the standards of health. Her pale blue hospital robe—just like the ones the rest of us were wearing—accentuated her pallor and that unmistakable yellow-beige “chemo” complexion that’s so common to patients who’ve been battling cancer for a long time. Her hair was short and patchy and her eye lashes and brows were virtually gone. But she turned to me and smiled an exhausted smile, and though I’ve forgotten her exact words, I remember that she was three years into her battle to survive breast cancer that had travelled to her bones and was now in her brain. I remember that she touched the port-a-cath, that visible square bump under the skin of her upper-right chest—which is just like the one I now have implanted in me—and said: “This is what you want, it’s fantastic.” She was right. It is.
I’ve thought of her often. I wonder whether she’s still fighting to survive, five months later, or whether her body has reached the point of exhaustion. I think about her will to live, about her gentle smile, and about the distance between us and how much of it is delusion. How many patients like her are there? Where does their strength and determination come from? Their willingness to be stripped of almost everything but their pulse?
You enter the area, you walk into a small room and lock the door, because you have to get undressed. In an impressive, succinct combination of images, words, and alphabetical order, you follow the guidelines written out for you on a poster hanging on the wall. Instructions A, E and F pertained to my situation. When you leave that change room, you’ve left behind your distinctiveness, your spark, your colour, and most of your joy, because you’ve become indistinguishable from everyone else. The hierarchy of illnesses is almost invisible. Everyone is just a patient.
No one could stand this for very long. We all need the recognition and validation of others. We need to experience agency in our lives. We require the dignity that comes with being able to speak for ourselves, to be treated as individual, precious humans who also express themselves by means of their clothing, their demeanor and their social interaction. Sometimes, just the look in our eyes is enough. Some of us are positively heroic in our endurance of pain and our astonishing resolve. Some of us are sad, some angry, some terrified and some, all of the above.
Illness and injury reveal us to ourselves. And to our loved ones, I think.
Yesterday afternoon, I couldn’t wait for my CT Scan to be done. I lay there, on the mobile slab inside the big white ring that vibrates and hums and lights up, with my arms above my head and the catheter placed uncomfortably right where my left arm bends, and held and released my breath as prompted by a disembodied voice, and felt the hot, fluttery rush of iodine as it entered my bloodstream and quickly made it all the way to my bladder. And then it was over. My catheter was removed, I gathered my things, re-entered the change room and recreated the person I am by dressing and leaving Radiology, walking down the long, labyrinthine hallways of the CHUM, till I reached Champ-de-Mars metro station, blending in with everyone. Similar, but Me nonetheless—and free.
2019 will be here tomorrow. Am I happy to turn the page on 2018?
It’s a question that’s come up many times these past few weeks and though the people asking it actually pause and wait to see how I’ll answer, for most of them, it’s really just a statement. There’s no question mark. Good riddance, is what they mean.
Despite the obvious life-changing events of 2018 that dismantled my own existence and transformed it into both nightmare and epiphany, I’m never sure that turning the page on a year is cause for celebration.
There’s something about taking even a second of life for granted that prevents me from wishing time away, but in practice, just like everyone else, my mindfulness is set adrift by the slightest wind or whim.
That’s what’s brought me to this keyboard today.
I should be at the CHUM right now. I was originally scheduled for my bi-weekly pre-chemo tests today, followed by 5-6 hours of chemo on Wednesday. But I’m not going. That’s my decision, made after persuasive prompting from Simon, and a deep, deep fatigue and weariness that has settled in me this December. When Simon and I realized that my next round would require me to travel to the CHUM on New Year’s Eve and then again on the day after New Year’s, we instantly agreed that this mustn’t happen, and that I should ask that my chemo be postponed to next week.
A one week reprieve—that’s all I wanted. But it feels like so much more. My hands aren’t healing enough between bi-weekly rounds of treatment, and so they always hurt; my energy levels barely make it to 7 out of 10 before I’m back in treatment; my morale is being affected by the 14-day box I live in.
I had dinner out last night with my Mum, her partner Claude, two of his three grown children, and my sons, plus Anne, my daughter-in-law. We got together on the West Island, as is almost always the case, forcing Claude’s family—city folk—to come to the burbs, which they do, graciously, almost every time we invite them. We were at La Maison Verte, where the food was delicious and the company was, well, family.
I spent New Year’s evening sitting across from my mum and Claude. My mum was in good spirits, so the conversation flowed. They’re both 84 years old, and doing well, but these days, of course, it’s hard to talk about most things without the shadow of my cancer there, poised to dampen everything. Then, somewhat to my surprise, my mum began to talk about the grim reality of growing old, and about the fortitude and the grit required to deal with the hard parts of each and every day. I think she meant the incremental losses that are inescapable: aching joints that lessen mobility and make this winter’s ice even more of a nightmare; eyesight that is not as reliable as it once was and has required cataract surgeries; the lingering side effects of cancers, multiple treatments, illnesses and the surgeries that each of them has dealt with, and which have sapped their resilience.
It’s such an interesting perspective from where I sit. I couldn’t help thinking that if the miracle occurs, and my cancer retreats for a good long while, then I may then have the privilege of entering the daily survival zone my mum and Claude inhabit.
What came to mind next was something I’d been thinking about for a few days, something that turned time on its head in an entirely different way. Looking too far ahead, when you have stage 4 cancer, is fraught with painful traps.
I’ve been observing my beautiful grandchildren, Penelope and Graeme, who are like the ocean, or a primeval forest, or a clear night sky in summer, or grand, symphonic music, or perhaps all of these at once. They are sublime creations, impossibly wonderful, painfully lovable and constantly changing into something new, and more, and completely fascinating. And of course, I can’t help but wonder how long I will be able to know them and follow their metamorphosis into adulthood. And I thought of my own mother who has had the immense privilege of seeing her grandchildren—all five of them—reach the ages of thirty-five (three in all), thirty-two and twenty-seven. She knows who they are, who they love, what their professions are, and what sort of humans they have become. She carries this knowledge inside. They have added rings to her life—expansions of love and joy.
I’m not even sure I’ll see Penelope turn ten or Graeme turn eight. Who knows? That’s the thing. I don’t have those years secured away and well-lived in their company. But my mum does—and she has even been able to know and love her grandchildren’s children (once again, all five of them—so far). Another ring added, expanding her life.
One mistake that these thoughts twist me into making is to hold back from Penelope and Graeme, calibrating the expression of my love for them, so that my disappearance from their lives won’t cause them as much pain. Cancer treatment has kept me at the hospital an awful lot, lowered my energy and caused me to be less present anyway. I can’t run around and be the grand-maman that I was. Sometimes, I wonder if they feel the decay emanating from me. Why not recede, ever-so-subtly, from their lives?
These are awful, stupid, self-protecting thoughts that have strong roots, and persist. I struggle with them. I forget that love is a growing, expanding emotion.
On Christmas Eve, this theory of love was put to the test when I went to join the Daoust clan, my husband’s family, for our annual bash. This year witnessed the best attendance ever, and we were well over thirty people celebrating. But this was also the first Christmas after my separation from Sylvain–their blood. It says something about my Daoust family that this made no difference to them, and that they were very anxious to see me, as I had disappeared since late June.
I thought I would be skittish, but as the day and hour approached, I found myself so looking forward to seeing each and every one of them, and swore to myself that I would share this feeling every chance I got. And I did. It was so easy to smile and to linger in the long, warm, encircling embraces I was offered, so many of which qualified as bear hugs. My Daoust loved ones smiled and asked me concerned, pointed questions, and then moved on to just being there, all of us together.
I’ve reminded myself many times that I’ve known them since I was barely 17 years old; that I’ve been through so many happy events and tragic moments with them—that we’ve grown up and grown older together, and that our children are reaching further into the future…Ring after glorious ring.
On Christmas Eve and at New Year’s supper, there were so many smiles. There was such sincerity in what was said and how we touched each other.
There’s a lesson here for me. I’m an introverted person and this need of mine to retreat is not always the way to go. Saying “Here I am”, with open arms this year, allowed me to recognize the steadfast circle that surrounds me, to see all that it embraces and to understand just how limitless is its ability to expand.
Last night, sleep didn’t come to me as easily as usual. At 11:25 pm, I was still awake, lying in bed in a room illuminated only by the glow of a white winter night sky. In my previous life, this would have triggered anxious thoughts about how I was going to get through the next day of work on so little sleep, but now, it’s just what it is. There are no real consequences to such things because my days are more about not getting sick, not getting tired, and laying low, than about anything outward-looking.
So I lay there in the incomplete darkness and turned my gaze toward the window through the white phantom curtains. I took in the December evening, the quiet of the house and the square space of my room—ceiling, shadow furniture and the folds of the blankets keeping me warm. And I asked myself a question that must come to every chemo patient eventually: What is my purpose?
When, last July, I figured out that I wouldn’t be able to work, or do much else once treatment started, I felt an enormous relief. I felt lightened. It felt like I had been busy running toward the next class, the next meal, the next appointment or chore for so long, I didn’t want to run anymore. I may have been running away from a lot of things too.
So much of our lives is propelled by plans, fears, desires, ambitions, routines, hopes, commitments, dreams, obligations, pressures and momentum. But what happens when the road ahead requires passive compliance?
My life has the strangest shape. It has so few of the usual pieces that I’m stumped by it. I watch people come and go, and know that I’m outside their worlds. Every now and then, when conditions are just right, I can join them, and for a while, I feel part of the stream of life. But I’m still just a visitor these days.
Winter isn’t helping. It arrived mid-November with snow that stayed, and biting cold. It has pretty much immobilized me. Chemo and cold are incompatible. My body’s responses to the frigid temperature are odd and painful. Chemo has transformed winter into an alien thing which keeps me housebound much more than is good for me. And it’s only just beginning.
Joni Mitchell, skating on Lake Mendota, near Madison Wisconsin, 1976, photo by Joel Bernstein
Lying in my bed last night, I found myself thinking about the other world, the one at the CHUM, where I experience short, intense bursts of purposeful, alternate life. There was nothing difficult about my treatment last Wednesday, but the day was long, as always, and my eyes wandered.
The cancer treatment centre of the CHUM is on the 15th floor: the top floor. Isn’t that wonderful? We step into the elevator and rise and rise above it all, and wait like (bald) eagles in our eyries. It’s a separate world made up of multiple large areas subdivided into “rooms”, or cubicles, where chemo is administered to hundreds of patients every week. Perhaps the most important difference between the CHUM and most of Montreal’s other hospitals is its brand-newness. Most cubicles, just like the waiting areas everywhere, have a floor to ceiling window-wall which offers not only a view of the eastern part of downtown Montreal, but also allows natural light to stream in, and patients and their families to look out and beyond the multiple wall plugs and pumps and infusion tubing.
Still, most of the large, comfy chairs in these areas have their backs to the window, which means that during the five to six hours that I’m there, there’s always the possibility of eye contact with other patients.
I’m surprised by everyone’s discretion. Some of us smile easily at each other, but conversations between patients are rare. Most of us are accompanied by family or friends for at least part of our stay. I’ve had seven treatments so far, and have never engaged in any kind of meaningful chat with a fellow chemo patient, once inside. Why is that? Well, in part, at least, it’s about the space available to us: we’re all settled in areas with walls and curtains that allow for a high degree of privacy, so interacting is a choice.
But those partitions also delimit the borders of our pain. No matter the brave or resigned face patients and their loved ones put on, from my chair, I observe so much more. Even though the discomfort of chemotherapy is easily bearable while in those chairs, you can sense pain everywhere.
For some, it’s the effect of repeated, long term assaults on their body and spirit. There’s an older man I’ve seen at blood tests and in treatment who suffers from thyroid cancer. I know this because I overheard him one Monday morning (pre-chemo tests day). His face is razor thin and his body is brittle. He has no more fat to sacrifice: cancer and treatment have devoured it all. He’s all angles and jutting bones, and his expression is mostly sour, impatient, and defiant. I wonder how much of him hurts with every movement of his body. His wife is always there with him, and I feel for her because hers is a thankless task. Then, last Wednesday, he and I found ourselves waiting to be called in for our treatment. And I looked at him, smiled, and said Bonjour! And he looked back and smiled Bonjour!
Well what do you know! This man, with his robotic voice, —which I imagine he owes to hours of radiation treatment— he’s just struggling to find a way around his pain.
I was in cubicle 17 last time. To my left, occupying the corner space and hidden by a curtain, was 16, and then, moving along the left wall, were 15 and so on. Of 16, my closest neighbour, I could see little other than the nurses coming and going, and hear voices, until an attractive man, perhaps in his early to mid-fifties walked out, heading, no doubt, to get some coffee. He wore a suit jacket, not some comfortable sweater, and was perfectly groomed despite the venue. I‘m sure he smelled good too. What I could sense from him was the temporariness of his stay here—he was here to accompany the person I could only imagine in the armchair next door. His eyes didn’t search the room. He seemed to be trying to maintain a kind of social neutrality as he moved about, free of the I.V. pole and bags that patients are tethered to. Free of cancer.
The hours passed. The I.V. bags containing all of our poisons were changed at the required intervals by hyper-competent nurses. And then a new face emerged from behind the curtain of cubicle 16. This fellow was perhaps in his late thirties, early forties. Tall and casually well-dressed in fitted black, from shirt to shoes. He was so different from his companion. He looked around as he came and went. He had an easy smile that drew me to his kind face. He could have been walking in an office building, except…for his I.V. pole with all the tubing attached to him, his shaved head and the bright red scar that began at his right ear and ran all the way up the side and top of his skull, past the mid-point. And the falter in his walk.
Brain cancer. You think that immediately. Then your mind runs through all kinds of terrifying scenarios. To words like glioblastoma. You imagine the surgery that he’s been through. You imagine what the first inklings of his illness might have been. You imagine seizures. You imagine the terror he must have felt when he was diagnosed. The bomb that went off in his life. The seismic ripples. The fear. And how far he’s come in a short time. And now, chemo.
Behind the curtain of room 16 there’s his story, most of which you can only guess at. But you wish him well. You send him every positive thought and feeling you can muster in such a place. You try to hold hope for him in your heart. You marvel at his beatific face, which is hiding so much pain.
CUBICLE 15
In cubicle 15, right next to him, there was a couple. They arrived together dressed similarly in relaxed clothes: jeans, sweater, no fuss. He got comfortable and she sat very close by on the plain stackable chair provided. They seemed close in age: perhaps their early forties. They looked like the parents of a few kids—I guessed maybe between the ages of 9 and 13…something like that.
They spoke to each other in near whispers, their expressions tense and urgent. The nurse came and got things rolling. And I found myself staring at them. I couldn’t help myself. Their S.O.S. signals were impossible to ignore. Once his drip started, she moved closer to him, and rubbed his hand gently, and for a very long time. Back and forth, back and forth. Sometimes they spoke quietly, but mostly, she sat vigil in silence. Later, I noticed that he had raised one of his legs to rest on her knees. And again, without smiling, without really looking at him, she continued her soothing, stroking motion.
There was love there, but they were at odds. Everything about them was tension-filled and anxious. More whisperings and agitation, followed by a period of coldness. Then her hand would reach out again and stroke his…The silent inhalations and exhalations of a terrible shared suffering.
At mid-day, a plump woman dressed in civilian clothes arrived at their cubicle, and the wife left. The visitor moved close to him, sat, and a conversation began. I know she must have been a staff psychologist by the way she spoke with him—discretely, calmly—but also because she stayed with him at least a full hour. During their exchanges (which I monitored discretely—it’s so hard to look away from another’s suffering), I saw him move from tense withdrawal, to resistance, to openness and then, to tears. I couldn’t help but witness those: it was the only moment in the whole day when his voice—now raw and vulnerable—was audible to me.
And then the session was over, and his wife returned, and within minutes, she was whispering urgently to him, her face filled with anguish and tears. Her side of the story, I thought. Her reality. He didn’t reach out to her. I imagine that he was still held in the state of being he’d reached with the psychologist, feeling, perhaps (I really hope so) calmer, more centred, less afraid—and so unable or not ready to open himself to her again.
They fell back into their pattern. He, quiet and withdrawn; she with her soothing hand extended, as she focused on the book she was reading. And the love and pain radiated from Cubicle 15.
“No anguish I have had to bear on your account has been too heavy a price to pay for the new life into which I have entered in loving you.”
― George Eliot, The Mill on the Floss
“Your pain is the breaking of the shell that encloses your understanding.”- Khalil Gibrand from The Prophet
“One word Frees us of all the weight and pain of life: That word is love.”
― Sophocles
I don’t know where to begin to describe the past 11 days. It’s been an epic encounter between chemo and the pathogens of the outside world.
It actually started when my sister Marie came to visit from Vancouver. Although this would be her 4th trip in a few months—to different continents and in very different time zones— the giant heart that beats inside her was committed to coming here, a week after her return from Chile (where she had worked very hard resettling her daughter, son-in-law and granddaughters into a new life there).
She wanted to accompany me to a chemo session, but found out only after her plane ticket was booked that I had had a week off because of a low blood count and scorched hands, and my treatment was now a week later than expected. “Fair enough”, she told me, “I’ll go with you to the appointments with the endocrinologist and to see your oncologist.” And that’s what we did, on the Tuesday.
Marie is a human generator, with energy that seems inexhaustible. It was so good to have her with me on that soggy, cold day when we headed into the city and went from appointments at one hospital, l’Hôtel-Dieu, to others at the CHUM, which is three metro stops away. We were gabbing so much that a couple of times, we found that we had set off in the wrong direction and had to backtrack.
At the pub, when all was still well.
It was the beginning of the week, and we knew that we had the luxury of many quieter days ahead to spend together. But as soon as our pace slowed, as soon as we settled in here, in the house, to talk and catch up, I noticed that Marie was speak-yawning, quite literally. There were all these things she wanted to say, but all her brain seemed to want her to do was yawn. And there were shivers too. She felt cold, she said (well, the house was cool, but Marie walks around in shorts in Vancouver on cold days and never seems bothered). It was as though her body no longer knew what time zone it was in.
The week passed, and then it was Saturday, two days to go before she headed home to the West Coast. We were having friends over because this was a scheduled IKEA-thon: 8 or more floor-to-ceiling bookcases had to be assembled so that we could finally get our cherished books out of cardboard boxes in the basement and up into the living room/library, where they would be close to us.
But, surprise, I never made it out of bed. I woke up sick as a dog, with what was either gastro-enteritis or food poisoning (my money’s on the latter: the thought of that smoked meat grilled cheese sandwich at the pub the night before still makes me feel green around the gills). I spent the day in bed, away from everyone: the fun, the voices, the laughter, the dinner, all of it. And thought non-food-related thoughts. And left my door open so I could listen in on the gregarious chatter.
But of course, a cancer patient is never really sure what’s going on inside their body, and I wondered if maybe something was going wrong with one of my medications. I was so relieved the next morning, a quiet Sunday, to wake up feeling shaky, but much better. Gastro or food poisoning it was!
And then I went to the den, to the giant sectional sofa Marie was camping out on, to see if she was up, and found her unable to speak, with full-on laryngitis, congested breathing, weak and sick as a dog, with a flight home to catch the next day.
Now it was her turn to be sequestered. Simon made that eminently, seriously clear. I was NOT to go near the den and Marie was NOT to leave the lower level she was on. This was to be my first true insight into my vulnerability as a chemo patient, and the havoc it can wreak. Simon wasn’t messing around. I HAD to stay away from whatever was making Marie sick, because as a chemo patient, I’m always immunosuppressed, and there’s no way to know how my body will manage to fight any virulent bug.
Marie slept all day, and recovered just enough, poor thing, to endure the slog to the airport the next day, the rental car return, and the 5-hour flight home (she seems to be doing fine these days). Meanwhile, Simon set to work sterilizing the den: each cushion, pillow, blanket and surface that Marie had touched, using a spray disinfectant and steam. I wasn’t even able to give Marie a hug before she left.
Simon, master disinfector
I suppose this should now be seen as the first test of our household’s HAZMAT response, because just four days after Marie’s departure, on Friday, Christian fell sick with an infection that mirrored Marie’s in many ways. He woke up so congested he struggled to speak and breath. His temperature hovered around 101 F. He was so weak he could barely get up. He was seriously ill.
Realizing what this could mean—his bedroom is next to mine and we share a bathroom—he contacted Lucie, my physician sister-in-law, who set off all of the alarm bells she could: this could be the flu; the flu could be lethal to me, his mother. I could wind up in intensive care. It could kill me. It would be best if Christian left the house. He was to have NO contact whatsoever with me. He was NOT to leave his room (except to use the bathroom across the hall which was now a contamination zone). He was to wear a mask any time food or water was brought to him. Anyone going near him (mostly just poor Simon the house biologist/parasitologist) was to wear a mask, gloves and maybe a lab coat too. Anything taken from Christian was to be washed and rewashed and the gloves were to be thrown out each time.
Simon on the attack
Friday, Christian’s temperature and symptoms were unchanged. Saturday, the same. Sunday, the same. He had soaked through his comforter, blankets, sheets, mattress cover. The minute he stopped taking Advil, his temperature shot up again. By Monday, the tension in the house was getting to me, and Simon’s hyper-vigilance was taking its toll: he was on edge and tired.
Aside from the microscopic parasites that were waging battle inside Christian’s body, I was the source of all of this anguish and anxiety and worry, and of the safety protocols worthy of the WHO (World Health Organization). It was me who was responsible for the tense, mobilized atmosphere in the house. Because of the chemo that has so compromised my ability to fight infection of any kind.
Christian was trapped in his room, isolated from civilization, because it was dangerous to me. And so, he has spent a week in there, watching TV, or online, or staring at the walls, alone, because of me. This is an intensely unwelcome side effect of chemo.
I’ve been feeling this way for days, now, and remembering a situation 6 years ago, when Simon, who lived in an apartment then, caught the super nasty H1N1 virus during Christmas vacation, and fell dramatically ill. I remember that the first thing he did was come home, to his parents’ house. I remember that we settled him in the living room, on the love seat, with blankets and a pillow and a TV table nearby on which we kept fresh tea and cold water, and monitored his temperature (there was one day when it stayed stuck at 104 F and scared us silly). And we were right there next to him, and we put on one DVD after another—many of which he slept through—and though he felt like death warmed over, he had us there.
Christian wound up going to the hospital with his father on Monday, where they waited and waited from 9 am to 10 pm. What is known, at this moment, is that flu (influenza) has been ruled out, and so has pneumonia. This is good news to both Christian and me. Blood was drawn for cultures to be done, and Christian should find out today if it’s a virus or some bacteria raising hell…
I’ve found this past week excruciating. Having us separated from Christian, with all three of us stalking around masked and gloved…It scared me. Illness reared its unwelcome head three times in less than a fortnight, and turned us all into hyper-alert germ fanatics. And the terrible thing is that it was necessary, and that it was on me. I am the antithesis of Typhoid Mary.
I don’t know that I’ve ever felt so disempowered and helpless to do anything to help my own sons. While he was at the hospital on Monday, Christian’s phone battery started to die, so he had to reduce contact to the weakest trickle. The lack of contact was painful to me. Like a connection between us was being stretched beyond bearing. I felt impotent. Useless. And like a giant pain-in-the-ass sickly obstruction.
I have to accept that during periods of contagion at least, I cannot be a mother, nor a caregiver.
Right now, I’m dealing with a bad case of emotional side-effects.
My understanding of what it means to sign on to a cancer research protocol is becoming clearer with every passing week. My nose is no longer glued to the window of treatments in the same way. I’m acculturating.
If I’ve understood correctly, the aim of the team of specialists who are shaping my life is to keep me in the full chemo protocol for a year, and then continue a second year just with Nivolumab, the immunotherapy drug.
Five weeks ago, I would have flinched at hearing this: only the first part would have registered. A YEAR of chemo? What human body can take that much abuse?
And then the first scan results came in, and I now know, for certain, that at least all of this isn’t in vain, and that modern science and my body have linked up and are giving me a fighting chance to stay alive a while longer. A GOOD while longer, is what I’m hoping and feeling.
Cast in this light, I think I can put up with whatever new side effects present themselves. Well…maybe that’s a bit too confident, but I do feel a renewed love of this carcass of mine, this sixty year-old body that has been asked to ascend the heights of Mordor. I’m so grateful for what it has accomplishing with the help of state-of-the-art medicine.
Rereading these paragraphs, I see how much Me-Me-My-I is in them, and it’s unsettling. Just a few days ago, I finished Nina Riggs’ The Bright Hour: A Memoir of Living and Dying. It’s a compelling, difficult book because Riggs wrote it while she was dying of metastatic breast cancer that spread to her bones and lungs over a period of two years. She barely reached the age of forty, and left behind two preadolescent sons.
I will not forget Nina Riggs, nor her challenging ordeal (her martyrdom, really): the early false hope, the rapid spread of her disease that became unstoppable, the painful treatments and myriad side effects she dealt with so courageously, so…adamantly. The last year of her life was a torment, and yet she held on. I don’t know exactly what drove her to dig so deep, but I suspect that it was her inability to accept leaving her children, whose lives and cares she shares in the book.
Her story presented me with one of the many scenarios that might await me, or any of us really, except that I’m right at the portal—the entrance to the place where the end is. I think Nina Riggs hung on as long as there seemed to be a path to follow: a new drug, a different protocol, a new surgery, a better pain killer. Until these and her tortured body were exhausted.
Nina Riggs
Whatever awaits me, I’m in this new life for 2 years. That’s what I signed for. It isn’t a comfortable feeling, but there’s something reassuring about knowing that a whole medical team is committed to me and to treating my cancer for such a significant period.
And so it is that I’m tied to two-week cycles in a two-year experiment. Minus one eighth, because I’m now three months in. It’s all very rational, very professional.
But within this structure is a simple patient: me. And while the physicians go about their business at the CHUM, wearing white coats and monitoring my case on their computers, I only live in their world for very short spurts: one day for tests and seeing the doctors, and one day for chemo, with extra days for tests as new side effects manifest themselves.
Most of this research protocol, this medical study, I carry home with me. It’s lived with friends, family, acquaintances and strangers. And my life is largely devoted to finding ways to make it all fit together, and to overcome my sense of uselessness and incapacity.
The truth is, I can’t do what I was able to do just 4 short months ago. Before chemo began, I imagined a life regularly chopped up into a few bad days and a bunch of good days—normal days—when I would be able to do pretty much anything I wanted. But that isn’t the way it is. There’s no more normal. There’s just managing change.
I no longer have the energy to go from place to place teaching adults. That life feels so far away. I can’t depend on my legs to feel strong under me. They’ve lost their bounce and these days, I’m just happy that they can get me to where I want to go.
I’ve told you about my hands and feet, which are fragile things now, with skin that burns in some places, is numb and thick in others or peeling off in strips. Opening a bottle of Tylenol, opening a jar of jam, putting on socks, holding a cup, using a chopping knife…All of these hurt, and are not always possible. So I ask for help.
My eyes are experiencing changes and there are times when, well into a great book, they simply won’t focus and instead start leaking, and I have to stop. My reading glasses are always cloudy, which makes me wonder whether the eye goop is continually splashing somehow onto my lenses. My gums burn when I chew gum and when I use toothpaste. My lips burn when I drink hot fluids. The inside of my mouth seems to always be coated with dead cells that make my mouth feel a bit like it’s lined with tapioca. My super dry nasal passages are permanently coated with bloody clumps of mucus that are sensitive and make my sinuses ache when I breathe, usually just when I’m trying to fall asleep. I pulled a square one-inch patch of thick white skin off the bottom of my foot yesterday, which came off like wax. No pain, and the skin beneath ready to take over. The undersides of my feet are a bruised red (where they aren’t snow white). The rims around my toenails are chocolate brown.
When the thermometer plunges, being outside triggers not only neuropathic pins and needles in my feet and hands, it also causes small spasms under any skin that’s exposed to the cold and wind, such as the tissue around my eyes, or else my cheeks or my chin, and I feel as though I’m grimacing, even if no one seems to notice. It forces me to bundle up like a fragile old woman.
Side effects of chemo. All of them. They’re predictable and monitored by the oncologists and nurses and usually, they can be alleviated enough that my “quality of life” (this is their great preoccupation) isn’t too negatively affected.
But what of the other side effects? There are so many parts of their chemo experience that patients keep to themselves—the interpersonal, intimate side effects that are also borne by the people they love. Sometimes, physical and emotional side effects become entangled.
For example, as the weeks of chemo have added up, Christian has taken to coming to my room now and then at bedtime, once we’ve both washed up and have put on our pajamas. The first few times, he asked me if I minded (of course I didn’t), and after that, he just text messaged from his room: “Can I come over?”. All he does is lie down on the bed beside me—I’m usually propped up and reading—and snuggles. Me and my 27-year-old baby.
There are times when we’ll just lie there quietly, our foreheads touching. Mostly though, we’ll talk about anything and everything but sometimes about small, meaningful things, like the fact that for most of his life, the thought of losing me was his worst nightmare (now that he has wonderful Vickie, those thoughts are waning). A simple phrase, but one that conjures the pain my illness is causing him. Or, on another evening, he told me how difficult it was when he first had the thought that I might not be the grandmother his children know.
There’s a special kind of awfulness to those kinds of thoughts spoken aloud when you’re in chemo. They hurt in an acute, specific way. They’re words that you can’t step out of the way of, they always hit, and that’s because their intention is sincere, and the bullseye is love. The thing is, I can’t always hide my reaction, and so, when I cry, my face scrunches up in a particularly ugly way because crying hurts my face since I’m in chemo. But what can I do? I cry. Then it passes.
I worry too about Simon, and what will happen if I die too soon, before he’s ready to handle all of the expenses of our new home. I think about him alone in this big place. I mentioned this once, and he told me that he had friends—a couple I know—who would perhaps share in a new multi-family configuration. Reassuring words. But awful words too, because they told me that his mind has had to go there more than once since my diagnosis, to the future place where I no longer live.
All of the thoughts and worries and practicalities that my sons are dealing with, and the responsibility I bear for them…No one told me about side effects like these.
The results from the Cat-Scans came in last Thursday. My sister-in-law Lucie, who is a radiologist and who therefore has access to such information through a medical online network, quickly sent me a rather jolting email; in fact, only a title which read: Appelle-moi. Call me.
It scared me. It was so bare bones that I thought she didn’t know how to broach bad news. I could have spent a terrible stretch frozen in worry, wondering how bad it could be, but it seems that I’ve moved into a more direct, head-on way of living. I picked up my cell and dialed, come what may.
She answered immediately, a minor miracle, as she almost single-handedly holds down the fort in the remote hospital where she is chief radiologist. There was professionalism in her voice, but also a special energy that drove her to speak as fast as she could.
Her first words were that my body is having a FAVOURABLE REACTION to the chemo protocol. She’s so intense: you could tell that she just loved saying it. This is a real medical expression that is determinant in oncology. It means that for whatever reason: extraordinary health care, being very lucky, being offered continuous, exponential love and support, THE TREATMENT IS WORKING! My body is collaborating, and in just 2 and a half months, the larger tumour in my lungs—there are many tiny ones sprinkled throughout them, but this one had the oncologists wondering if it might be actual lung cancer and not metastatic colorectal tissue, because it measured over 6 cm—has shrunk 30%, with the rest of the cancerous tissue doing the same thing. No one has yet seen the abdominal scans (except the liver, which now shows the same results and where there’s only a tiny speck of a tumour), but everyone expects to see exactly the same thing in my bowels because the cells being hit are all of the same type.
So, on Tuesday, I got to travel to the CHUM and meet with the head of the research study, Dr. Francine Aubin, and smile. She smiled a lot too. She’s very happy. And she made me understand that this was a terrific result and that she believes that the Nivolumab—the new immune therapy drug—is at work here; has kicked in.
How does one deal with such a mixture of…relief, joy, disbelief; a gut feeling that this was expected (simply based on the disappearance of my most obvious cancer symptoms); a guilty feeling that this is undeserved, and creeping superstition about saying anything at all about it? I wrestled with this. Should I share the news? What if it changes…what if they discover something that casts a pall over this wonderful morale boost?
But that lasted about 2 minutes and then the thought of being able to tell my sons, my mum (who deserves to hear something happy and reassuring), my sisters, my husband, my friends…it overrode everything else. It felt wonderful to have some lightness and joy to share. Even if it’s just the beginning and even if I have no idea how long my body will continue to cooperate and ally itself with the drugs being pumped into me.
There’s magical thinking, and then there’s disturbing conditioning, and I’ve been giving a lot of thought to the latter; about the many ways it’s coloured my life. It’s been with me since my diagnosis, which evoked memories of my parents.
When my dad was diagnosed with lung cancer in late 1987 or very early 1988, I wasn’t quite 30. It was awful news that was especially difficult because of our (my two sisters and I) strained and wounded relationship with him. The making of those scars won’t be told in this narrative, but with the distance of three decades, I realize that my father suffered from cardio-vascular disease, anxiety-depression and a good measure of obsessive-compulsive disorder that, combined with childhood trauma and something in his brain that could trigger explosive anger, were beyond his and my mother’s capacity to manage, at a time when the medical community had a fraction of the understanding of such things compared to today, and too few tools to deal with most of them. Which meant that my father was left largely untreated, and we, his three daughters, exposed to all of it.
My mother coped by covering most things up. Hiding what was happening in our house from the neighbours and her own parents and siblings. As much as she could, at least. For as long as she could. And so, when the cancer was diagnosed, she did what she knew best: she forbade us from telling anyone that our dad had lung cancer. She swore us to secrecy, until she felt the time had come to share the truth.
I remember feeling immediately that this was the wrong thing to do. My sisters did too. It was like being asked to swallow a bomb and carry it around in your belly for as long as you were made to. It was a dark and sad burden to internalize. It was maintaining the theatre of a life that had just been shattered. It was hiding anguish and pain. It was disorienting. It was anathema to us.
I don’t remember when the interdiction was lifted, or how people came to know…which is strange. I suppose once my dad started chemo, there was no more hiding it. He tried to keep going to work once his chemo started, but soon found that it was impossible (I understand this so clearly now: his stoicism was extraordinary). Because this was 1988 and the cancer was already in my dad’s pleura (the pair of membranes lining the thorax and enveloping the lungs), it seemed clear that his chances of living even 5 more years were bleak. And so, slowly, the world was allowed to know of his suffering and also of his need for love and kindness and support and companionship.
This opened the door to months of a different way of living and dying for my dad, who quickly hatched a plan with his baby brother Leo (my dad was the 7th of 9 children and Leo was the tail-ender) to have an extension—a sunroom—built on the side of the small house my sisters and I had grown up in, and then together add a wooden deck onto the back of that.
These projects, which my dad had to supervise at first, and then get right into, brought a wave of joy back into his life. Watching him with his leather tool belt hanging from his hip, side by side with Leo, through the spring, summer and early fall months, it was almost possible to forget how sick he was, and lovely to observe how poignant this dedication to the act of building was.
On May 24th, 1989, two years after his diagnosis and six days after my twins’ sixth birthday, which we celebrated together at St-Hubert BBQ and which he attended, my father died. It was very early morning, and he died at home, my mother by his side. It was the gentlest of exits for such a lion of a man, who was as slight and fragile as a bird on his last day.
My mother had lost her life partner and first love. There was all of that grief and sadness and abrupt emptiness; and the unearthing of memories and reliving of them to do, in their house, which was, for a long while after, still so suffused with his presence. And of course, there were all those hard months at the end, the months of beginning to let go, when they must have talked.
For reasons that we’ve never understood, my father chose to leave his daughters nothing. Not one of his beloved books, in which he might have written a dedication, not a written note, not a private conversation to stow away in our memories…nothing. He simply left.
I look back thirty years, and know that my father will remain a mystery to me.
I have always resisted the hiding and the opaqueness that smothered our childhoods. But recently, I came across poet David Whyte’s newest work, Consolations—The Solace, Nourishment and Underlying meaning of Everyday Words, in which he describes hiding as a way of staying alive, of holding ourselves together until we’re ready to come into the light.
Though Whyte’s insights help soften the feelings and attitude I have about those years lived under my parents’ roof, my appreciation of the value of sharing and opening up to others, and trusting in them, is the path I’ve chosen. The hiding is over.
In my lifetime, a lot of what I’ve thought about is fabricated within the trap my mind has set for me by keeping me preoccupied with the future. I wonder if I haven’t spent at least a quarter of my life planning for the future, thinking of what would be, what might be… Worrying about what my children’s lives will be like (they are grown men of 27 and 35, for heaven’s sake) what will happen to them, and their children (with climate change and everything going on in the world, it’s hard to zig and zag away from those worries).
Until 2017-2018, there was also what would happen to me in teaching, as the school board went through endless personnel restructuring; how I would manage to hold onto my job and do everything I wanted to do: teach, write, be a loving mother, daughter, wife, friend and grand-maman;, take care of my body and health; how I would fit it all in as I age, in spite of the cumulative fatigue and significant stress…How well I would live that “second life” (a life after life) promised to so many women who are mothers…
Would I be able to keep living with my husband? Would I ever find a way to redress the mistakes of my past that brought me to the place where I was: a mixture of daily passion, joy, love, buried sadness and marital stress…
When would my health begin to fail? (well, it was already failing, wasn’t it?). Would I be afflicted with breast cancer like my mum? Heart disease or lung cancer like my dad? Alzheimer’s? (I honestly never thought about a violent death)
How would I reconcile the different parts of me that pulled in different directions: the teacher, the emerging writer, the mother, the friend, the daughter, the disillusioned spouse, the person as yet undiscovered (because I feel that too—none of us ever stops changing and becoming)?
Would there ever come a time when I got my life exactly right, that is, when I became the best person I could be—the very best version of Michelle, who got all her shit together and arrived at the end of her life having worked through most of the distractions and mistakes and simply become a genuine, good person?
(The worry generator in your own mind undoubtedly produces similar thoughts, like small, irksome movies that eat away at your serenity.)
And then there was my cancer diagnosis, that peeled away everything extraneous, and focused an intense beam. It brought all of my fears right in front of me, reducing my field of vision. What have been my worries since July? Not the big, broad strokes on the canvas. It’s the details of my life that are preoccupying. I have become myopic.
What’s chemo doing to my body? What is this change in the pigmentation of my skin? Is it dangerous? Permanent? Can a person develop melanoma while undergoing immune therapy and chemo? Are these changes to my body—its premature aging—reversible? Will my body recover its strength and musculature? How long will it take for my hair to grow in and for my body to return to its “normal”, familiar appearance?
And what about after chemo? Will there be radiation? Will every lesion in my body be hunted down relentlessly? Will there be surgeries? How many? What if the metastases make a spectacular resurgence? How much time will I have after this first wave of treatment ends before cancer returns? How many years like this year can I endure? How strong am I? What if cancer goes to my brain? How long will I accept to live with that before I choose release? What if it migrates surreptitiously to my bones? To my pancreas? (these are among the worse-case scenarios because they’re the most painful)
What if I can never teach again? Do I want to teach again? What if I run out of money? What if, what if, what if…There seems to be no limit to the apprehension my brain can manufacture.
So many waves of angst that could just keep rolling over me, drowning out everything else. Which they did for a while.
But something has happened. It rose out of my life and almost completely snuffed out the fear that I was stoking and that swirled around me. It emerged out of a thousand threads: from the thoughts, messages, prayers, benevolent intentions and wishes, warmth and LOVE of the dozens, perhaps hundreds of people who have hugged me, messaged me, called me, visited me and rooted for me since my diagnosis; from the impeccable, humane, professional and all-encompassing care I’ve received at the CHUM; from the radical transformation of my life which brought me to this peaceful house in this quiet town that is encircled by nature; from the tranquility I find here, which allows me to simply exist in moment after stressless moment; to the resolution of the sadness and pain of my marriage through separation; to the gift of TIME, which was foist upon me by the exigencies of chemo, and created large spaces of forced idleness that I filled by writing, napping, reading, thinking, listening to music alone, and watching television all curled up in a blanket…I know I’m repeating myself here, but it stills feels unreal to me.
The truth is, I’ve never been so stress-free. Imagine that. It makes no sense, but the fact remains that since I’ve learned that I have metastatic cancer, I’ve moved closer and closer to a place of calm and peace. Maybe that’s because these past three months have not only pulled me out, by the roots, of my previous life and patterns, but have also stripped away all of the weeds and strangling things in my life, placing me squarely before the starkest possible truth: that I am mortal, that I WILL die, that I have NOW, and that my future is unwritten. NO ONE KNOWS what lies before me, except that I will die, as will we all. I don’t want to live for all eternity, so why should I be afraid? Or put another way, why should a fear of pain in the future cause me pain in the present?
On November 13th, I’ll undergo the first CT-Scan since I began chemo. The results could be crushing. They could also indicate that the treatments are working beautifully. They’ll be given to me roughly a week after that. There are indications from my body that there have been positive changes: certain symptoms of my cancer have simply vanished. What should I do with these thoughts in the meantime?
In a lovely, thought-provoking novel by Matt Haig that I’ve just finished, titled How to Stop Time, I found this series of questions. To the question: What am I afraid of? , I would add: Why am I afraid?
And then, I would turn to this list of questions, which is nestled at the end of Haig’s How to Stop Time, and I would delight in the answering:
“And, just as it only takes a moment to die, it only takes a moment to live. You just close your eyes and let every futile fear slip away. And then, in this new state, free from fear, you ask yourself: who am I?
If I could live with doubt, what would I do?
If I could be kind without the fear of being fucked over?
If I could love without fear of being hurt?
If I could taste the sweetness of today without thinking of how I will miss tomorrow?
If I could not fear the passing of time and the people it will steal?
Yes.
What would I do?
Who would I care for?
What battle would I fight?
Which paths would I step down?
What joys would I allow myself?
What internal mysteries would I allow myself?
How, in short, will I live?”
[This is an excerpt from Matt Haig’s How to Stop Time, Harper Collins, 2018, p.314]
Looking at your face up close in a mirror, like when you’re putting on makeup, you see the small ravages of chemo: the darker skin over your lips that looks a little like a moustache from a distance; the much deeper circles etched under your eyes that cause you to use a concealer stick for the first time in decades; the strange complexion you have that’s like an unhealthy tan but is really hyper-pigmentation caused by the chemo (which has made appearances all over your body too) ; your missing lashes and eyebrows, thinned to match your bald head that is now growing a fluffy, bristly down that’s as white as your mother’s was. The eyes that look back are knowing, and that brings you closer to yourself, and perhaps, to the knowledge that you’re stronger than you thought.
2. With everything that has been stripped away, you have never been more YOU. Accept yourself.
3. When you wear your beautiful, real-hair, expensive and stylish wig, no one can tell you have cancer. But oddly enough, you very often choose to leave the wig behind—which still feels like a disguise—and head out with one of the cool caps or beanies you thought to buy before chemo even started; before you lost a single hair on your head. The other day, at a local tea shop, the assistant greeted you saying: “Oh! I love your new haircut! It’s lovely!” and before you even took a nanosecond to think, you replied: “Oh, thank you! It’s a wig! I’m in chemo!”. You were surprised and a little dismayed to see her turn beet red from discomfort. That wasn’t your intention: it just came out that way !
You find that many things that once frightened you no longer do.
4. Your life is on a brand-new track. Your days have emptied out to make room for chemotherapy treatments and medical appointments, and tests, and rest, and recovery. In exchange for the loss of your ability to work and of such a big portion of your energy, you’ve been given lots of static time—the kind that allows for calmness, quiet, peacefulness, meditation, writing, reading, watching, thinking, listening, and just being. You’re more often alone during the day because you’re home, and you find that this solitude is mostly replenishing. You have never felt so little stress, so at peace. You can’t quite understand how this is so. You know it won’t (and shouldn’t) last. It isn’t life, but it’s your life right now.
5. Being open about your cancer and treatments, especially the way you have, with a series of blog posts, has not made you a pariah. Instead, it has opened channels with people you’ve never met and some you barely knew. It has deepened many friendships. It has given you AND others a different means of understanding cancer and its treatment, and of banishing judgement, isolation and misunderstanding. At least, that seems to be what you want and what others want too. You huddle with them, and it warms all of you.
6. During those low post-chemo days when you sleep, shiver, and drag yourself about, and know that your body is drained and struggling, it’s okay to submit to its needs. Your body is brave and tough and wants to get you to the end of this trial. It’s doing everything it can. Love it back.
One. When the impulse comes to isolate yourself, resist it. You can give in at first, because maybe your energy or your blood count are low, or you’re in pain, or because you need the quiet and the rest. But not for long.
Humans who love you bring energy of the very best sort. They don’t always know that they’re also bringing the noise of the outside world that can make you feel despondent, or that you don’t feel able to deal with. They almost always mean to bring LOVE and to give CARE—a good meal, a hot tea, a movie watched together. Laughter. Companionship. Being seen and feeling connected. The things that make life worthwhile.
Two. If you feel low. If you feel lost in end-of-life thoughts, or fear, or sadness. If you feel purposeless. If you feel sorry for yourself (a totally legit feeling, in my estimation, in small doses). If you feel pulled out of time and unmoored…
READ A MATT HAIG BOOK.
This advice will fit most of the situations you encounter. Matt Haig is a lovely, British human being, husband and father. He’s also a prodigious novelist (7 times) and memoirist. Every book of his that I have read (3 so far) has been poignant and filled with such joy that he has changed the way I think about life. I’m convinced that he writes each one with this intention. The first one I read was The Humans (2013), which delighted me and left me filled with joie de vivre and also left me pensive. The second one was his startling memoir called Reasons to Stay Alive (2016) in which the reader learns about the author’s long battle with depression. The title suggests he was victorious. And, with The Radley’s (2010) waiting next to my bed, I’ve just finished How to Stop Time (2018). Anyone living with cancer will find this beautiful novel helpful. All of Matt Haig’s books leave the reader feeling replete, and of all of them, I think How to Stop Time may be the most touching and most likely to help you to keep thinking and feeling on a path without fear.
Three. Write. Keep a journal. Jot down your soul states or random thoughts or observations about the leaves falling; or the noisy truck that’s getting on your nerves; or how much you miss the real taste of food; or what made you blue just hours before; or what happy thought or insight you just had…
Write about a hobby, or something that interests you.
Make a list of all of the people you love and care about.
Make a list of the things that worry you.
Write about your pet.
Make a list of all of the foods and drinks you’ll gorge on once chemo or radiation are done.
Make a list of what you miss, then make a list of everything you would have missed had you not been on Cancer Hiatus.
Four. If you’re like me, and tend or tended to wear the same clothes to chemo or radiation treatment all the time—in my case, the tops I wear have to have front buttons so that I can leave with an infuser filled with a chemotherapy drug tied around my waste that continues to pump its meds into me for 2 days— throw it out or give it a vigorous washing and then give it to NOVA or any local charity. I think that once that part of treatment and living with cancer is done, you shouldn’t wear its uniform. Make a fresh start. Buy a few items in new and different colours. Make the outside match the changes inside you, especially the changes in the way you see your life, and the way you see yourself.
It’s been a rough two weeks. I should have had round 5 of chemotherapy last Wednesday, October 17th, but on the Monday, the usual day for my pre-chemo blood tests and checkup with the oncologist, I was red flagged (emphasis on the red): my hands, my poor, scorched 5 FU tortured hands, didn’t pass muster. Dr. Lougnarath looked at them for a matter of seconds and said (in French): Oh, well then, we’ll skip this week and give Mme Payette’s hands a break.
Empathy. What a beautiful thing. I really didn’t know how I was going to get through the torturous Friday that awaited me, when my hands swelled up like knackwurst on the bar-b-q again.
But the truth is that I really didn’t feel well and hadn’t for days. On Tuesday, I spent hours commuting, then a few more in the waiting room of a hospital associated with the CHUM, with Christian by my side, in order to be seen quickly by endocrinologists (something about an elevated TSH level, which turned out to be no big deal), then back on the metro and the bus and finally my car…and then home.
Through all of this, and for several days previous, I had felt shivery, unsteady on my legs, and 95 years old (or at least, how I imagine that might feel). And so, it came as blessed relief to find out that no matter what my hands looked like, I wasn’t going to have chemo anyway, because my neutrophils count was very low.
Fall, at our new home
You may have noticed all the underlined words. It’s meant to show even those of you who’ve never been near a chemotherapy ward, that cancer comes with its own reality that includes a language that patients and their loved ones become very proficient at in a hurry. Neutrophils—a friendly enough word—basically are those white cells that fight off most of the regular bugs you’re exposed to (in other words: you need those levels up in a hurry).
Monday, October 22nd
This is something that no one tells you about and that you cannot prepare yourself for in chemo. It’s that moment when you hit the wall: the nadir.
Chantal, my pivot nurse, told me today that with a 2-week chemo cycle, a person’s body barely has time to eliminate most of the poisons injected into it before it’s being assaulted again. When it’s your body that’s the experiment (literally: this IS part of a research study), it’s a reality that’s psychologically inescapable.
Fighting cancer Rocky Balboa style
October 23, 2018
I almost typed a different date. I had to stop and really consider where we are on the calendar. For a minute, I was lost.
It’s just one of the ways in which my life has swerved since July. Without the grounding work of teaching, which is so schedule-driven, my sense of time has started to wobble and fade. Even my hair-colouring appointments with Gabrielle, my friend and hairdresser, were as regular as a metronome. Alas, I am now hairless.
The only thing that stops me from floating off and away from “regular” life is the boxy tightness of my two-week chemo cycle. Tests and consultations are almost always on the Monday or Tuesday before chemo, which is every second Wednesday. Then there’s a lost period, that seems to vaporize my life into passivity, naps, lots of television and a feeling of biding my time until…well, at the most basic level, till I can walk and eat and do things like everyone else and then, looking a bit further ahead (dare I?), till I can rejoin life the way it was (I think there’s no going back to that). The way it could be? (Better).
I had a wonderful evening yesterday. My friend Cindy and I went over to the Hudson Theatre to listen to novelist Ian Hamilton talk about his astonishingly successful Ava Lee series of mystery thrillers. He was very sweet and unassuming and wry and sharp as a tack, and we had both read his books, so we were fully invested. We left with signed copies and the feeling that this man cared about the quality of his interactions with his readers. He mentioned the pure joy he felt each time he sat down in his basement office to write the books whose pages his imagination was filling up faster than he could type them. And that, of course, is where I found one connection with this man whose previous career took him all over the world to do business: in the IMMENSE JOY that flows to him from his writing. This is what I asked him about.
In bed, all wrapped up under the covers at the end of the evening (it was rainy and cold last night), I thought about that kinship. Mr. Hamilton, you are a comrade, in a tiny but important way, because we share a common passion. Then, my phone buzzed, and it was Cindy, writing “Thanks for a perfect evening.”.
Lying quietly after reading Cindy’s phone message (actually, I had to turn the light back on and lean on an elbow to read it), I fell back under the covers feeling ….
Happy.
My goodness. After a pretty shaky couple of weeks, this is how I felt. Happy. I like typing it because it has been so absent. Happy, in the sense of content to be exactly where I was, in that moment. This feeling kept me awake. The unexpected, improbable, delightful lightness of it.
Because I wear ear plugs to bed (though I no longer sleep beside someone who snores), I can hear my heart beat as I lay my head down on the pillow every night. When Cindy’s message buzzed in, I was doing exactly that: listening to the pa-puh, pa-puh, pa-puh, pa-puh, pa-puh, …of my beating heart, thinking: you are a wonder, little heart (it sounds little, inside its cage of ribs). How do you continue to beat in spite of everything I’m doing to you? pa-puh, pa-puh, pa-puh, pa-puh, pa-puh, …Does the chemo reach your cells? Is it wrong to ask you to spread its toxins around? pa-puh, pa-puh, pa-puh, pa-puh, pa-puh, …Do you know there is cancer traveling in the blood you pump? Would you still beat if you KNEW?
My heart has no choice but to be an accomplice in spreading metastatic cells. It can only beat and pump my blood and keep me alive. It’s the ultimate neutrality.
I hold nothing against it. This heart of mine. It’s rhythms, pa-puh, pa-puh, pa-puh, pa-puh, pa-puh, are mostly steady and the pressure it puts on my blood vessels, safe and healthy. It beats though I am in chemo. It beats though my cancer is stage 4. It beats, even when each contraction sends painful 5 FU to my hands and feet. It beats faster, and, I think, contracts harder when I cry. It beats slowly when I sleep.
Last week, in Hudson, most of the deciduous trees were still green, and with all of the towering old pines thriving in the sandy soil, autumn still seemed more anticipated than real. But with the arrival of colder, greyer days, there’s been change.
In the wake of chemo last Wednesday, I missed it, spending almost all of my time inside a strange and artificial world of side effects and rest. But yesterday, Christian and I drove to the Village grocery store, and that’s when I noticed how quickly the colours of fall have taken over the landscape.
It’s pouring rain as I write this, and the forecast says that’s about the size of today. In an hour, a man will be here to change the carpet on the main staircase and upstairs hallway of our house. First, he’ll remove the one that’s been here since 1975 (with a zillion staples and small nails holding it solidly in place), and then he’ll put down the new and hopefully resistant replacement. I wonder if this will still be Simon’s house in 45 years? He will be 80 years old then. And probably still changing the world.
Earlier this morning, around 5:30, some of the rain sounds entered my bedroom through the inch or so of window I had opened the night before. No matter how well or unwell I feel (or how cold), I like to keep an aural connection with the world outside.
I’ve never had my own bedroom, and before my separation from my husband and my move to Hudson, I had not slept alone for any length of time for 37 years. Now, I have a room that’s mine, at the end of the upstairs hall, tucked away to the right. This bedroom of my own is a strange place for me. I’ve spoken a little about this. I suppose that in my mind, it was going to be the bedroom in which I lived to be an old woman. I remember, when we were house hunting, Simon talking about houses with too many stairs that would be a problem for me as I got older; and I also remember rolling my eyes, thinking of my 83-year-old mum, who climbs 14 steps multiple times each day, going about her business (though she now rations her trips to the basement). And besides, I’ve only just turned 60!
It’s no longer possible for me to look at my room this way. It isn’t a good idea to look so far ahead. Like everything else in my life since my cancer diagnosis, what was once excitement and anticipation regarding our new home in Hudson has been tempered. I’m still not completely settled in yet. A lot of my things—those objects whose value was never decorative, but were mementos of a timeline that rooted me—are still in boxes or drawers, or shoved on a shelf, jumbled with stuff I don’t care about.
I suppose the fact is that I don’t know what—though I emphatically know who— I care about now. Do any of these things matter to me? I was happy when my husband came to the house and put plain white curtains up in front of my window. It was kind and helpful and I now have valuable privacy, as my window looks out onto the street. I value each and every piece of jewelry, each book, and jar of skin cream, and tube of hand cream, and box of tea, and cookies, and tray of squares or muffins that I’ve received since July, all of which were meant to proffer love and care and healing. They are—and more likely were, if they were among the delicious things—my talismans and elixirs.
And now I find that I’m coming to love my room. The past few chemo cycles have been harder to get through. Their after-effects have lasted longer and longer and been more debilitating. Today is Thursday, which means that in 6 days, I’ll be back in chemo again. The skin on my hands still hasn’t stopped peeling away. My nose still bleeds easily. My legs are still wobbly at times. My eyes still leak sticky fluid that’s irritating. I’ve started getting discomfiting stomach cramps, out of the blue.
But there’s my room with a view, and in that room, there’s my bed. And during the past few chemo cycles, they have become a haven.
At the worst of this past cycle, on day 3, when the burning in my hands and eventually in my feet had reached a point where they were utterly useless to me but so painful that all I could do was shiver and whimper, evening came, and with it, the comfort and safety of my bed. With only Extra Strength Tylenol in my chemo management arsenal, I really didn’t know if it would be possible to sleep.
It must have been exhaustion that cleared the path (and the two Tylenols), but I slept ten hours that night and woke at 8:21 the next morning, still in pain, but less so. I took all of this in without even pushing back the covers. My comforter and blankets felt light, and warm, and I can honestly say that I considered staying there for hours longer. Being under those soft covers was heaven, and I didn’t want to leave. What made this so strange and delicious is the fact that I haven’t slept well—haven’t fallen into deep, restorative sleep—for years.
There’s no shame in escaping the effects of chemo and the exhaustion of the heart, soul and body. I often want to lay down mid-afternoon and just nap…Let the hours fall away…Escape a situation that has become in large part a struggle to manage my reduced life. But I resist, as much as I can, because there are better reasons to stay awake, to take in the sun and sky, to write like this, and to write to everyone I care for, to have friends over, to try to be helpful to my sons who carry more than their fair share, to be with my grandchildren, to read and read, to go for blessed walks in the winding streets of Hudson and gawk at how lovely it is, and to reconnect with life, and the joy of living.
But there are days when I could sleep for a thousand years.
I had my fourth round of chemo two days ago. After each of the first two rounds, I experienced one day of fever, and several days when all I could do was lie down and sink into the exhaustion I felt, and my uselessness. Then, on my third round, the fever never manifested. I waited for it…never felt sure what was coming…but it left me well alone.
That was the upside. In exchange, unfortunately, I now deal with two new side effects that are almost as paralyzing as fever—though less scary. The first is a type of peripheral neuropathy caused by one of the drugs I’m administered (Oxaliplatin) that causes hypersensitivity to cold and even cool objects, drinks, foods, even breezes, and presents like pins and needles jabbing your hands and feet (in my case, mostly my hands), and a weird, if occasional, feeling of cramping in my face and lower legs, and something I’d compare to electric shocks. Luckily, avoiding direct contact with cold and cool things—a metal object in a cool room or a gulp of cool water or anything taken from the fridge, for instance—pretty much limits these effects, which usually last 3-4 days.
The second side effect is linked to the drug 5 FU that is so essential to my treatment. In the range of problems that might be caused by a drug, I never would have come up with this one: it’s called Hand-Foot syndrome or Palmar-Plantar Erythrodysesthesia. Unfortunately for me, 5 FU is the drug that I take for 46 more hours upon leaving the hospital (the one that I carry around in the fanny pack). As I write this, it’s still emptying itself into my port-a-cath. It’s almost empty by now; I have about 4-5 hours left to intake before a nurse removes it at the clinic nearby.
palmar-plantar erythrodysesthesia in my left hand
I feel good today. I have energy. Appetite. There are so many things I’d love to do in the house to help my sons who otherwise have to do it all. I’d love to go for a walk, but letting my hands hang or swing against my body is contraindicated. So, aside from gently tapping this keyboard that is a lifeline at times like these, I can barely use my hands. They feel like they’ve been scalded. The symptoms are quite severe. There’s a weird discolouration of my palms and fingers that are striated white and red. All of my fingertips are swollen (this time, I knew to remove my rings before the swelling started). Bending any part of my hands: the finger joints, even trying to close my fists, is painful enough that it interrupts my breathing (I don’t gasp, but quite often, I can’t manage a breath). Holding a spoon, opening a jar, using any kind of hand or finger pressure to do anything is extremely painful. Last time, when the swelling subsided, skin peeled off several of my fingers. My body barely had time to produce a new, paler protective layer of skin before chemo started again.
By a funny, if clearly cruel twist of fate, minimizing the effects of the peripheral neuropathy means avoiding cold and applying heat, while minimizing the effects of palmar-plantar erythrodysesthesia means avoiding heat and applying cooling. Which means that all I can do is apply skin balm and protect my hands with white cotton gloves. I’m stuck with both until these symptoms pass…
Our bodies are most perfect at birth (though even this is not given to all of us), because we have still to live; we have barely begun. But yesterday, after reading Donne’s words, I started jotting down all of the ways that my body has been compromised in my lifetime, excluding commonplace childhood diseases, accidents, scrapes and scratches. I was looking for those body experiences that carry a heavy weight of sense memory and form the tissue of some of my life’s most formative narratives.
I’ve listed many, but not all, of the important ways my body has been harmed over my sixty-year lifetime. These are the ones that immediately came to mind:
– My brand new permanent bottom two front teeth, just freshly grown in (they may have been a few months old), were smashed to bits by a stray hockey stick when I was 6 years old. That was the last time I ever played street hockey. I remember my mouth full of crunchy tooth shards. I remember my mother being very upset (“Oh Mikie !” she moaned). I remember the pain caused by the icy outdoor air reaching the exposed nerves.
Those teeth were never capped. Instead, they were filled with an amalgam that discoloured them. They abscessed twice. I lived my whole life with small, darker lower front teeth. It’s really only since the advent of video cams and smart phone videos that I realize how prominent they are when I speak—but disappear when I smile.
– The bride of Frankenstein look I had for a few years, after having thyroid surgery (a partial thyroidectomy) at 14, in third year high, which left a 4-inch, very red horizontal scar across my neck. Surgical techniques are far more refined now. I remember how stressed and scared I was during the weeks leading up to the actual surgery at the Montreal General. I remember how I felt like a freak. I remember curious students wanting to see the scar that I hid under turtle necks for the first few weeks. I remember how it was one of the first things Sylvain, whom I married, asked me about on our first date, when I was 17. I remember how it all unfolded during some of the most unhappy, turbulent years of my life.
– At 24 years old, I said goodbye to my beautiful, perfectly smooth, flat abdomen, when I became pregnant with my firstborn twins, Simon and Jeremy. I weighed 119 pounds the day the pregnancy was confirmed, and 172 pounds when they were born, at term (!). Since that day, my body has carried the stretch marks and the scar from the emergency caesarian section required to save Jeremy, my second twin’s life. Their birth is one of the most intense, happy and traumatic events of my life. I remember the day I went to see my obstetrician for my 6-week post-natal checkup. It was lovely, and sunny (it was July 1983), and after he examined me, I remember saying to him: “I feel like I’ve aged 10 years.” I also remember him very clearly saying: “Hmmm…well…that’s about right.”
– Since Christian, my youngest, was two, I’ve carried the small record on my abdomen—two unobtrusive X-like scars—of the removal of my gall-bladder by laparoscopic surgery. A tubal ligation was also done while I was under. It was done on a Friday, and two days later, I was driving my 10- year-old twins to the swimming pool to train, with Christian next to me. The hospital where the surgery was done, The Reddy Memorial, no longer exists. Nor is it possible any longer for two surgeons to coordinate their schedules to save me the experience of a second general anaesthetic. It signalled the end of the pain my gallbladder was causing me. It also signalled the end of my fertility. I remember being so worried that I wouldn’t wake up from the anaesthetic. That I would be one of those terrible cases of women going under for a tubal and disaster striking, leaving them in a vegetative state for the rest of their lives, effectively abandoning their children and mate. I remember being admitted the previous afternoon, and how the staff pretty much left me alone, to sip tea and enjoy the extraordinary luxury of not being a wife or mother for a little less than a day. I remember that I read The Bridges of Madison County that afternoon, front to back, and felt like I’d spent the day at a spa. I remember crying, as I made the decision to have the tubal. There are endings in our lives that we cannot recognize as they occur. This wasn’t one of them.
– A far more terrible thing has happened inside my body than the cancer that is now hurting my healthy organs and tissues. For a short time, it turned my body into a tomb. It was the loss, the death in utero of my third son, Gabriel, stillborn 19 months before Christian’s birth, at 29 weeks’ gestation. Of all of the events of my life that were immensely painful, but which left no marks on my body, Gabriel’s stillbirth was the most scorching and, I think, the most transformative. Love and loss are meant for each other. They’re life, really. Losing Gabriel deepened my understanding of this. It was a seminal moment in my life. I think that more than any single event, though it left no visible traces, Gabriel’s death prepared me for this journey with cancer.
– And then, there’s the simple fact of aging—how each of us grows old, if we’re lucky enough to have that chance. I was awoken to this early on. It was the appearance of the first grey hairs scattered among my thick, wavy dark brown hair when I was just 19, that confirmed that I had inherited premature greying from my mother’s side. Those white hairs multiplied furiously when I was in my thirties. My son Christian was born when I was 33, and I remember thinking that I didn’t want him to be raised by someone who looked more like his grandma than his mum. And so, until just last week, when I had it all shaved off, I’ve been trapped in a cycle of colouring my hair (lighter and lighter as the decades passed), not wanting to see, in the mirror, the face of someone whose appearance didn’t match the vitality I had and the image I had of myself.
There isn’t a hair on my head right now, but I hope to see it grown in grey or white someday soon. Last weekend, when I’d just had it all shaved off (by a lovely woman with an electric hair razor at the wig salon), it was stubbly and itchy and tended to catch on the under-webbing of my wig. At home, I was shy about my bald head and kept it hidden under caps. But Christian wouldn’t have it. He wanted to see my hairless head. I haven’t asked him why, but I sense that it was about love, and taking in my vulnerability, and trying to help me feel better about myself by removing any sense of shame or embarrassment about my predicament. And curiosity too: wanting just to SEE, and wanting specifically to see the shape of my head—my skull.
Hearing me grumble with the stubble and the wig, Christian offered to shave my head with a hand razor. And I said yes (I surprised myself). And so, he brought a chair into the bathroom, and got everything he needed ready. I took off my beanie, and Christian’s instant response was to smile and say: “Oh! You have such a nicely shaped head!”. And then he soaked a towel with warm water and placed it gently on my head, once…then again…and then he applied the foam and began shaving my head with a hand razor. We were both very quiet, and Christian’s very calm hands moved over my scalp, and I closed my eyes, the way I do at yoga, and simply let myself be taken care of.
“Love’s mysteries in souls do grow,
But yet the body is his book.”
Last week, one of the oncology psychologists on staff at the CHUM called me, wondering if I’d be interested in meeting her to talk about my experiences so far. While I thought of saying: No, no, that’s not necessary, I’m doing pretty well, blah-blah-blah, another part of me remembered the sadness I’d recently struggled with. How quick my reflex was to dismiss her invitation because I didn’t want to go back to the CHUM on my off-week (that is, my chemo-free week), and perhaps because dismissing her was also a way of making some of my medicalized life just go away…
And then I also remembered that I had booked an appointment for Friday at 2pm with Les Jumelles, identical twins who have been in business 35 years, helping people (mostly women) suffering with hair loss, and whose salon is just a 15-minute metro ride from the CHUM. And so, I said yes to the psychologist, Véronique, and booked us for noon.
Véronique is actually at the end of her training, and her PhD supervisor, also a woman, sat discretely against the wall, tucked away in a corner, and simply listened and took notes for the entire 80 minutes (we should have gone to 90 but Les Jumelles were also expecting me).
It was a strange experience at first. I’ve consulted before, for other reasons, and am convinced of the immense value of the therapeutic process, but to be sitting in a sterile room on a stiff chair facing two psychologists, at a time when I feel as though I’m falling from a great height, with no sense of where the bottom is…Well, where do you start?
Everything about what’s happening to me is contextual. My separation from my husband; my new, multigenerational home; my diagnosis and treatment. These are all so intertwined. There have been so many simultaneous changes. Attempting to convey any of this in 80 minutes…
In the end, what I wanted to express to Véronique (or else why bother consulting her?) was my distress, which is always here, inside me, woven between my hope, my daily life which is so full of meaning and so suffused with love, and woven also into my fears about the possible destruction of my life and of me, and the suffering that attaches itself to this, which I cannot help but observe, distraught, as it seeps into the lives of my loved ones. I want to get through this experience of cancer and chemo, get right through to whatever outcome awaits me, but I want to get there without causing pain to the people I love. This is impossible because it isn’t how love works. This was what I left Véronique with last Friday. She said that she’ll come and see me as often as possible while I’m in chemo, which may not sound ideal, but which is a very sensitive decision on her part, leaving me as much time away from the CHUM as possible.
Next, I had to set off to the wig shop. Just like my meeting with Véronique, heading off to the shop in a part of the city I rarely even drive through was something I had to do alone. I surprised myself by doing this. It was a secret that I had largely kept from myself: that I could arrive at this point.
My new wig, looking a little creepy on its “stand”
From what I had read (spurred on by wishful thinking), people treated for colorectal cancer rarely lost their hair. It wasn’t one of THOSE cancers. Their hair might thin, but they usually fared quite well. And then came the chemo, and by week three, all I had to do was pass a large toothed comb through my hair to collect handfuls of it that had detached right at the follicle. There were other similar torments: washing my hair in the shower and collecting the strands of hair, like thick dark ribbons, caught between my fingers and clogging the drain. I had my hair cut much shorter, hoping to save it, but it just made it easier to spot the dozens and dozens of strands clinging to my clothes and collecting in the corners of my bedroom. And then I realized that my hair was so thin that you could see my scalp easily, because my part was widening every day…
My thick, wavy hair, that I had just grown longer after years of wearing it short, had become the drip of the loss that is a daily reality when you’re in chemo. And I couldn’t stand it anymore. Couldn’t stand the feeling of decay that it evoked in me. So, I decided that I would do what I thought I would never do: I walked into Les Jumelles, feeling alone and not very tough, and I tried on wig after wig—most of which I thought made me look appalling—until I saw one that seemed, um, human, and that I thought maybe I could wear.
A small cap was placed over my real hair, and the wig was placed over that, and there I was: straight-haired, with a long fringe that cut across my face. It was impossible for me to speak above a whisper, or to smile. Something was happening in that moment that felt unreal. Cinematic. Taking this step was for me, in important ways, a final retreat, or, looked at from the other side, a determined decision to walk toward all of what chemo means.
The women in the shop thought I might return on another day and have them shave my head and do some final adjusting. They were surprised when I said that I wanted my head shaved right away, and the wig styled and trimmed (with a shorter fringe at the front please!).
And then it was done, and I stepped out onto the sidewalk feeling like some false, floating thing was on my head, and that everyone would stop and stare (and maybe screech). No one batted an eyelash. I had already ordered beanies and caps that I would be able to wear when I wanted out from under the wig, and I wear them a lot at home. But out in the world, the wig, while still an alien thing, is also a valuable accessory because it allows me to walk around without a giant C, for chemo, stamped onto my forehead.
Today, the house is empty, and so it’s my time to write. I didn’t dress up, or put any makeup on, and I just covered my head with a dark blue beanie (no wig) and sat in from of my laptop. Within minutes, the doorbell rang, but I didn’t answer, because I didn’t want to be seen like this. The delivery man left a package by the door. It took just seconds for me to see that he had left the wrong package. Five minutes later, the doorbell rang again, and I knew I had to answer, and make the swap. And face this man.
This morning, after the deliveries.
Then, 15 minutes later at the most, the doorbell rang again (!!), and this fellow, whom I could see through the bevelled glass, seemed pretty insistent, because he rang another time, and just hung out in front of the door. Oh, man. Well, I answered the door. He was a lovely fellow coming to take measurements of the floors because we’re having work done on them. I had been expecting him at 7 pm.
Something is happening to me as I live with cancer and chemo. I’m being made to let go of more than I can count. And each time, I survive the loss. And each time, I am given something I didn’t have. Insight, clarity…I can’t say yet.
Last Sunday, a full 11 days into my second chemo cycle, when my energy and spirits should have been restored, I tumbled into sadness again. It started in my bedroom, at day’s end, just like the previous time. It wasn’t as easily shaken off. It stayed longer. The next morning, as our paths crossed in the kitchen before he left for work, Simon asked me how I was, and I started to tell him what had come over me the previous night, and then, right there in the kitchen, with no means to stop them, the tears started pouring out again.
Imagine behaving in such a way with someone about to set off to a heavy, fairly stressful day? (there was lots going on atJohn Abbot College this past week). I couldn’t help it, but it didn’t last long, in part because Simon stopped and spoke to me in a way that was immensely helpful—a mixture of empathy and scientific objectivity— and also, I think, because before finally falling asleep on Sunday, I’d had time to do some self-interpreting.
I’d had a happy, gorgeous Sunday. It was warm and sunny, and my son Jeremy, daughter-in-law Anne and Penelope and Graeme, my 6 and 4-year-old grandchildren, were coming for the day.
We had fun! They were so delightful, so happy to be here with their parents and uncles and me, their grand-maman. But Penelope was nursing a cold from her first few weeks back in school (grade 1), which meant that I wouldn’t be able to touch her or hug her; and even though this was apparently explained to her easily enough, it stuck with me. It hurt.
A little later, maybe because she was watching Graeme doing something physical outside in the yard, I heard Penelope say: “Oh mama, what if this cold never goes away?”
Sigh. The flash of a child’s anxiety whose tiny echo reached me in a way that it couldn’t have reached anyone else.
And then, very soon after, Graeme retrieved a small dragon stuffie that had been left by accident in the toy box at our house after his last visit. When I told him that he could just bring it back home, he looked up at me and said: “It’s okay Grand-maman, I want to leave it here. You can take it and put it in your bed and when you wake up, you’ll think of me.”
Graeme’s stuffie
Sigh. Well, I did it of course, and since then, I often hold it close to my chest when I’m curled up in bed. Yesterday, it travelled to chemo with me.
The prescience of children is astonishing. They know deeply, without knowing all.
My hair is falling out— “thinning” is what my nurse and my hairdresser say, but at this rate, there’ll be nothing left in a matter of days or weeks—and it’s having a demoralizing effect. On that day, it got me thinking that it’ll soon be necessary to tell P&G something about what’s happening. The thought of causing anyone I love pain is a constant torment these days.
The view from my bed
At bedtime on Sunday night, these thoughts got all tangled up with the medical experiment that my life has become, and it occurred to me that contrary to the experiences of my mum, whose chemo 5 years ago lasted 3 months; and to the journey of a former neighbour and friend, whose chemo lasted 6 months, I still had no idea when my chemo will end. In spite of all of the love and support I receive EVERY DAY, there is still a knot that forms itself inside me: a mixture of fear and fatigue and a sense of somehow still being alone in this drama, and of regret, too, that any of this might infect the wellbeing of anyone around me, and anyone who stays in touch, no matter the distance that separates us.
Haircut, in hope of saving it!
Receiving chemo , cycle 3
I found a Frida Kahlo quote the other day that describes the human journey perfectly:
“At the end of the day, we can endure much more than we think we can.”
HERE’S MY CHEMO COCKTAIL MENU AND THE ORDER IN WHICH IT’S ADMINISTERED TO ME EVERY 2 WEEKS:
Nivolumab 240 mg, IV
Decadron and Zofran : 2 capsules each, orally, pre-emptively, to control the nausea that’s cause by Avastin
Avastin 320 mg , IV
Leucovorin 704 mg, IV
Oxaliplatin 150 mg, IV
5 FU (Fluorouracil) bolus *
5 FU (Fluorouracil) 4224 mg, IV /46 hours **
Notes:
*A bolus is a single dose of a drug or other medicinal preparation given all at once.
The infuser of 5 Fu (hidden below) is attached to the port-a-cath in my chest, with lots of bandaging to make sure it stays on.
**I also receive a huge dose of the same 5 FU. An infuser bottle is filled with it and hooked up to the port-a-cath in my upper right chest. From the moment I leave the hospital, to the moment it is removed 46 hours later at my local CLSC, it will continuously pump 5 FU into my body. So really, my chemo lasts 3 days. The infuser is with me everywhere I go for those 2 days, in a fanny pack I wear just below my breasts, in a kind of reverse-geisha look. It infuses best at body temperature and so stays very close to me, except to sleep, when I then must sling the fanny pack over the bed post, and kind of hide it behind my pillow, without moving too much and accidentally pulling on it in my sleep. This seemed like something impossible to adhere to, or at least a guaranteed insomnia inducer, but so far, it hasn’t been as bad as it sounds.
The last three drugs on the list are part of what is a standard protocol for treating colorectal cancer, nicknamed Folfox (which is less of a mouthful!).
Simon keeping me company (and correcting tests) 🙂
Because my cancer is a wanderer, I’m also being given Avastin (that’s the name it’s sold under, but it’s actually Bevacizumab, which, frankly is a terrible tongue-twister and sounds even nastier when you try to say, in rapid succession, Nivolumab / Bevacizumab, which I honestly couldn’t manage at first but which the oncology team were just whipping out like nobody’s business).
The view from my chair at chemo
But the central piece in the research protocol I’m participating in is Nivolumab, which is nothing like the other drugs, as it is an immunotherapy drug:
“It is a human IgG4 anti-PD-1monoclonal antibody. Nivolumab works as a checkpoint inhibitor, blocking a signal that would have prevented activated T cells from attacking the cancer, thus allowing the immune system to clear the cancer…” (from Wikipedia). The science on Nivolumab is high level but largely inaccessible to most people, because the papers are far too technical. I rely on my son Simon and his PhD in biology, to vulgarize it for me. What he’s read is very exciting so far.
One of the chemotherapy rooms at the CHUM
This is given to me over a 5 to 6-hour period, depending on how efficient the hospital lab is on that day. It’s a massive chemical blow, and some of it, like Oxaliplatin, is really just pure poison. Though I’m called in at 9 am and usually arrive there at 8 am to signal to the pharmacists that I’m present (and can they please get cracking preparing the prescribed drugs?), I have never begun my infusions before 11 am. It’s a long day, but I’m in such good company—with Christian, or Simon, or both, and next time, my friend Louise— and the environment itself is so bright (all the exterior walls are windows) and brand new, and actually quite convivial, that though the hours pass slowly—there’s just no getting around that—they pass peacefully. I feel that I am in good hands.
I always travel there by train, and usually get home the same way, except that Simon’s car or my car are waiting in the parking lot at one of three stations (depending on circumstances and schedule and weather and parking availability), and that’s how we finish our journey home from the CHUM. A 60 km trip from door to door.
A lot is sacrificed to the beats of a life in chemo. Work, insouciance, freedom, wellbeing, energy, personal vanity…
The days are not expansive. They are calibrated and limited by the physical energy that’s available.
The needs of the body are merciless and will not allow neglect.
I am at basecamp, in full view of the mountaintop.
Every time I’m at the CHUM for blood tests and examinations and chemo, I’m given some new form to fill out and more information to read. The forms are always given to me by my pivot nurse, Chantal, and are usually questionnaires designed to track the side effects of the chemotherapy protocol I’m following. Most of the questions are on a gradient—0 meaning never/none and 10 meaning severe—and are concerned with the kinds of things that I would rather never have to think about again, such as constipation, diarrhea, fever, fatigue, loss of appetite, pain, neuropathy, depression, etc.
Chantal, who is perhaps a few years younger than me, is just about the gentlest person on the planet. She’s infinitely patient and always speaks in the most soothing voice. There isn’t a speck of distance in her attitude, or in anything she says, but rather, a deep, compassionate desire to help, to alleviate, to reassure and to bring me within reach of healing, and perhaps something more. Chantal wants to bring me to a state of health, certainly, but also to a state of peace.
Or at least, this is how she makes me feel. As she spends more time by my side, and also with Simon and Christian who have been there with me at the CHUM almost every moment, we are being transformed by her vision of cancérologie (in English, cancerology, though I think it’s used less commonly).
Chantal never uses direct verbs like beat and battle when referring to the many-diseases-with-one-name (because that’s what cancer really is). The word cancer comes up the same way fever or headache or nutrition or sickness do: they are dimensions of an experience that is simply a part living—and staying alive.
Anselm Kiefer. The Evening of All Days, the Day of All Evenings. 2014.
I have Chantal’s work email, I have her work phone number, and I have her home phone number. I’m meant to use these any time anything goes wrong or any time I’m concerned with the seriousness of a symptom, such as fever. I try never to invade her private time—her weekends and evenings—and so far, things have worked out.
What a choice she has made, to give such a crucial part of her life to the intimate, very personal treatment and well-being of cancer patients.
Since the beginning of my odyssey at the CHUM, I’ve been given forms to fill out, check lists, pamphlets, booklets and file folders full of “what to expect” information about my illness, its treatment and all of the possible hazards and side effects that may be in my future. It was, and still is, overwhelming. I’ve found it difficult to dive back into it all once I’ve left the hospital.
I did, however, read the small book on colorectal cancer. Every page I turned moved me through the stages, 1, 2, …until I had reached mine. In the treatment section, the first word I read was PALLIATIVE.
I was unprepared for that. It hit me hard. Palliative: a word I associate principally with end of life care. Which is a beautiful, valuable thing, but speaks of a destination that I know I have not reached.
It was still early on, and I hadn’t begun chemo yet, and I felt the scorch of that word as though I’d been branded. Then, I remembered the words of the surgeon who had given me the formal diagnosis: she had simply said “We’re treating a chronic illness now.” This, too, is what palliative means: the treatment of an illness that cannot be cured.
That’s my fate. To live as long and as well as I possibly can with an illness that has dug deep into my body. In this way, I am like men, women and children with diabetes, multiple sclerosis, heart disease, lupus, cystic fibrosis…Our individual situations are not identical, but I do feel that I have joined the company of people who share an awareness of the body’s vulnerabilities, of the constant possibility of suffering, of the medicalization of their lives, of the need for daily courage, and of the great good fortune of being alive.
In my situation, hopefulness can look an awful lot like denial. It isn’t. Before the chemo started, especially, I had low and lonely moments when I wondered whether it wouldn’t be better to keep my bedroom in our new house as neutral as possible. It seemed better not to leave too deep a footprint in my room, or in the office I share with Christian. I wondered if I should stop ordering books online. I realized how silly it was to worry about developing a dependency on Ativan to sleep…It was the least of my worries, surely. I had become a far more subdued version of myself.
This is not realism. It’s fear and sadness and confusion. It’s what happens when these cause us to cut ourselves off, even only briefly, even only in our minds, from the sources of love and support in our lives.
One night, as I lay in bed, I closed my eyes and said: “I trust in love. I abandon myself to love”, and I forced the corners of my mouth upward just slightly, and a feeling of peace came over me.
Artist Vincent van Gogh Year 1889 Catalogue F612 JH1731 Medium Oil on canvas Dimensions 73.7 cm × 92.1 cm (29 in × 36 1⁄4 in) Location Museum of Modern Art, New York City
There was a time, in my childhood, when I often lay awake at night, silent as the grave, perhaps listening to the breathing of my sister Marie, asleep in the bed next to mine. Hers was against the wall of my parents’ room—which may have given her all kinds of things to dream about—and mine was against the opposite wall, right under the double window, which allowed me to push aside the flowered curtain a bit, and stare up at the night sky.
I think it’s that view of the immense darkness, into which it was still possible to glimpse an abundance of stars (there was less light pollution then), that triggered the cascades of anxious thoughts that returned to me, often, in the night.
By the time I was 8, I had experienced several deaths in the family; had seen my father break down and cry at the dinner table after his mother died (we were on summer vacation in Cape Cod when we received the news and had to pack our things up and return home); had already been to the funeral parlour more than once and witnessed an open casket. I remember feeling caught up in the distress and sadness of others, and understanding to a surprising degree the finality of my separation from those who had died.
When I stared up into the night sky from my bed, as a child, what I saw was the wondrous and terrifying possibility of eternity. Children whose upbringing includes almost any form of religious education are soon introduced to the notion of an afterlife. Their parents do this because it’s what they’ve learned and probably firmly believe, but also, because it’s immensely compelling and comforting to know in your heart that those you have lost—a parent, a dear friend, even a stranger whose accidental or violent death has shaken you, and worst of all, a child—have “passed on” to a better place and so, still exist, and remain somehow accessible to you through prayer or some form of spiritual, noetic connection.
I accepted this notion of enduring, lasting contact with those we’ve lost because of course it made separation from them less cruel. It made it endurable. It seemed to bring peace to the adults in my life who were suffering. It was part of a child’s imaginary universe of “ever after”, so beautifully laid out in the bedtime stories that are read to us in childhood.
And then, one night, as I lay quietly in bed, the idea that when I died, I, too, would go on to live forever and ever and ever, struck me as something truly disturbing and frightening. It was good to imagine the grandmother I had lost looking down at me from a vague and peaceful place, but it was entirely different to cast myself into a mode of existence that would be vast and infinite. Being with Jesus, or being with my lost relatives forever no longer felt soothing. As a school-age child, wrestling with the notion of eternity, of existence going on and on and on and on and on…in a form that my mind could not grasp—that none of our minds can grasp—it kept me awake, tossing and turning.
My photo: doorstep, Fall 2013
I’m not sure why, but I never brought this up with anyone during all of the years of my growing up. I suppose that I did what many (most?) of us do, which is: experience life, gather empirical evidence, keep asking questions and searching for answers, remain curious and open, seek out sources of illumination, recognize the people who seem to carry within them a luminous quality, and people whose effect on those around them is always positive, as though they were infused with some sort of spiritual grace; and finally, read, read, read, read all kinds of books. Books about death and dying, of the type pioneered by Elizabeth Kübler-Ross, certainly, but fiction is also full of profound storytelling on the subject that often reaches us empathetically far more quickly than most other written works, and I never shied away from those.
I can’t help but wonder, though, whether my intuition hadn’t been sending me messages for a long time, because some of the most magnetic, most affecting books I’ve read in recent years have been memoirs of the dying, the grief-stricken and the suicidal: not one of which was anything but inspiring. The first of these was Joan Didion’s acutely observed Year of Magical Thinking, followed by Matt Haig’s Reasons to Stay Alive, a brave and straightforward book about severe depression, by a favourite, sweetly funny author. There was also Paul Kalanithi’s When Breath Becomes Air, one of the most beautiful, most precious books I own. More recently, there was Cory Taylor’s Dying: A Memoir, which I read just months before my own cancer diagnosis, and lastly, Natalie Goldberg’s Let the Whole Thundering World Come Home, received as a gift a few weeks ago, a story of survival, which has galvanized me into writing about my experience, because, added to all of these other small, unassuming, important books, it helped me to see how much we need these distilled, unflinching accounts of facing illness and possibly death—our own or a loved one’s—and how there are no rules for the writing of these. Each is as unique as the experiences being recounted.
Death and dying are the only profoundly personal, individual human experience we are ALL certain to share; they are the ultimate oxymoron—the universal one-off.
I haven’t resolved the conundrum of eternity, and I don’t think I’m meant to. I no longer search for absolutes. The physicist and man of letters, Alan Lightman, speaks of a universe, a world in which all composite things, including humans and stars, eventually disintegrate and return to their component parts. Based simply on my observations of the things we build, of the natural world that still surrounds us, and of our own aging and return to the earth, this seems a good place to anchor my thinking about beginnings and endings.
What I also know now, for certain, is how much we simply need each other, to get through the tough days, the suffering and the fears; and I know that it is enough. I have received a life-threatening, ominous diagnosis, and yet I have never felt so loved, so surrounded and so grateful to be alive. A spirit, an energy connects me to others, and to life. I have always felt it, been aware of it moving through me, but never so clearly as now.
August 22nd, 1991. St-Mary’s Hospital. Mother and son (me).
When my mother asked me to write the second part of her final blog, I knew that it would be my eulogy to her.
In her last blog, she describes her many losses. The gradual decline of her health, quality of life, and autonomy. I know from our conversations that this chipping away at her ability to live was the most emotionally taxing part of this whole experience.
For me, they represented a sequence of little deaths, each accompanied by a period of grief.
I mourned my mother’s ability to ever feel well and healthy again, and gained a deeper gratitude for the privilege I still possess.
I mourned my mother’s mental clarity, what she called “Chemo Brain”. A very real and disheartening phenomenon.
I mourned the deterioration of her physical strength, and her appreciation of her own luminous beauty. First with the effects of treatments on her hair, then the inescapable indignity of a wonky colostomy bag.
It was hard to see my mother’s ability to read and write without hinderance slowly vanish.
Harder still, I mourned my mother’s ability to live a pain-free life. That is, until she was placed in palliative care.
But I was also witnessing something awesome.
After four years of suffering, anxiety, and cancer eroding my mother’s mind, body, and soul, I discovered what remained; who my mother really was at her core.
Despite it all, the woman I visited in room 105 was kind, patient, easy-going, and generous. She was lovely. She was love distilled. Not only did these parts of herself survive the process, but the darkness in which they were set made them shine brighter. The bitterness, and the resentment at the cruelty of life that was robbing her of her future, weren’t there. She had her moments of sadness, of shuddering under the weight of all those losses, but these feelings inevitably passed through her.
My mother in palliative care. Photo taken by me, Christian Daoust.
Among my mother’s many passions was teaching. I would say it was her calling, one she found later in life. She was the kind of teacher who got to know her student’s life stories. The names of their partners, the names of their children, and grandchildren. The trials and tribulations which led them to leave their home countries and come to Quebec. Here’s a little story about my mum.
Years ago, now, she was beginning her career teaching French as a Second Language at an adult education school. It was mid-December, almost the end of term, and she heard that a student of hers–a young single-mother who was struggling to make ends meet–couldn’t afford to buy her child Christmas presents. The very same day, my mother went out and bought some. She wrapped the presents, and brought them to the school’s director, requesting that they be given anonymously to her student. She told no one about this. The only reason I know it happened is because I was home when she walked in with the packages.
In the grand scheme of things, this small act of kindness is just a drop in the bucket. It certainly didn’t rescue this woman—my mum’s student—from her difficult circumstances, but it did ensure that a child would feel special on Christmas, and I can only imagine how important that is to a parent.
Photo taken by me, Christian Daoust.
With my mother’s passing I have lost more than a parent. I have lost a great friend (my very best friend, in fact), a confidante, a font of wisdom and love, my writing partner, my ideal reader, and a vital part of my support network.
The two of us on Portobello Road, London, UK. 2015. Photo taken by me, Christian Daoust.
I think that for all who knew her, she was more than one thing. Always more than just a friend, a teacher, a sister, a daughter, a neighbour. If nothing else, that’s something remarkable to aspire to.
I love you, mum. The best in me, came from you. Au revoir.
The following was dictated by my mother, Michelle Payette Daoust, between April 7th and May 19th, 2022 in room 105 of the Vaudreuil-Soulanges Palliative Care Residence. She passed away on May 22nd at 17:40. She was surrounded by people she loved, and who loved her.
Taken by Francis Séguin.
So much time has gone by since the last “Moonshadow” approached and I thought I would be unable to finish this blog.
The reason is that I’ve become a palliative patient.
Here I am in a place I would never have imagined. And I know, now, that I can share with you and tell you what I’m living. That it will make you feel good.
It’s interesting how, as I come to the end of my life and of my story—of “this is moment”—what I’m short of, what I am having a hard time finding are the words to describe this experience of moving towards death. Yes. But moving towards something else too. A something I never expected to find.
So here I am, edging closer to the end of my life, which I can’t quite feel yet because of all the meds, and all the wonderful power of care. It has created the illusion that I can remain in stasis, in a kind of never changing, always peaceful, state of being. But that isn’t the way we die. We die incrementally. I will slowly begin to lose the things that keep me in this world. Eventually the tumors and everything else will create pain so strong that palliative drugs (which I hope will work) will knock me out and I will start to just disappear.
I have begun living with this backward count of saying; how long can I feel this way? Well, how long can things continue along this path? It’s a matter of time before losses make themselves more known and unavoidable. Well, what do I do about that? I think mostly I just have to keep steady where I am and do the work with Christian over the next two, three, four, five, however many days I can squeeze out before illness and pain push me beyond the boundaries of being able to do what I want to do.
These thoughts are starting to intrude a bit because it starts to feel unreal to be here and to feel so well. In fact, of course, I don’t feel well underneath the medication. My body is very sick and I’m being spared a lot of suffering by some very good medical practice. The truth is that I’m in deep shit. I’m in trouble here in this chair where I record these words.
If someone were to simply walk away with the little pump that keeps me in such good equilibrium, everything would be gone. Everything would have been taken from me. I have to remember that, right? That this medicine is keeping me in this beautiful place, helping to keep me here as myself. These thoughts are intruders, intruders that can disrupt the peace I feel. I’ve come to realize that this peace is the only gift I want to give to the people around me. Perhaps that’s how I should frame things from now on; not being so focused on what might be taken away, simply living every heartbeat of my present condition. And feeling gratitude.
I am trying to put into words this jump from living with pain and loss, to living one of the most wondrous things I’ve ever experienced in my whole life. With this very last blog I hope to share with you whatever insight I’ve gleaned from this experience in palliative care.
In this building you know you are accompanied. There are other people making this journey parallel to yours. But it’s private. Our doors can stay open or our doors can close. We can ask for either, and it will be respected. But even though we know that we’re not alone, we’re basically all moving through time in this house, in this home, in a way that we’ve never done before. I’d love to try to explain to you how changed I am by my living here and how unfathomable it is to me that this should have happened almost instantly and so easily. One moment I was in our house and everything was painful, not from a care point of view, but just from the situation. And the next moment that was over. I say it over and over because I don’t remember how, I don’t know how that happened. I do in a basic sort of way, yes, getting meds straightened out and putting people into palliative medicine. I understand that. But so much more has happened to me. And I’d like to share it with you. I think it’s important.
Taken by Francis Séguin.
Falling
How exactly did I end up in palliative care? Well, about a month ago now, I was going up the stairs to my bedroom, and my left leg just gave out under me. I fell backwards down the stairs and hit the floor like a bag of bricks. After a trip in the back of an ambulance, and a night in the Valleyfield Hospital Emergency Room, I was told I had fractured my collarbone.
Though painful, and unlikely to ever heal, the broken collarbone was an almost incidental development. What wasn’t incidental was being presented with the fact that I couldn’t live at home anymore, that I was palliative. It was too much, and too difficult to transform the house into something where I would feel safe. I also realized that it wasn’t fair for me to put Simon (and Cindy) through the stresses of what could happen to me every time I tried to get up from my bed, or from a chair, or from the toilet.
My whole existence has been pain management for the last couple of months, going from the sofa in the living room, to my bed, and back to the sofa. And that was enough. Without any of the details, most of which were unpleasant and took place in an overwhelmed hospital, I wound up here back in Hudson, back home, except not my home with Simon and Cindy, but my new home in palliative care, at the center.
I don’t remember how I arrived at the Palliative Care Center. I don’t remember if it was in a car or in an ambulance. I don’t remember the day. I don’t remember the weather. I don’t remember what I was wearing.
I have no memory of not being at my house or leaving our house to come here, which is just a few minutes down the road. My sons would tell me easily how it happened and how I was. But it’s all a blur to me. What matters was arriving here in palliative care, in this beautiful little town of Hudson. In a building hidden behind trees and making itself quite discreet despite its size. And everything begins here. A new roof. I seem to have fallen out of time.
Losses
If you’ve been following this blog for any time, you’ve, of course, realized that what I’m talking about is a series of losses. Some of them I’m experiencing because of cancer, but not just because of cancer, because of cancer treatment, because of an experimental treatment forcing me into a stricter scientific environment. This meant rarely deviating from the path that Bristol Myers Squibb—the sponsor—wanted me to follow. The latter became increasingly difficult as the years went by, just as the losses have also been incremental and devastating in their own right. Ever since then I’ve been followed by a moon shadow. The first loss has been the inability to live outside of pain. The tumor in my rectum has been causing, very serious, very debilitating pain. There was a question of me returning for radiation treatment on the fourth basement of the CHUM. And I did go.
All of this happened at the same time as the accident, the fall that eventually led me here. If you look at losses, well, some of the most painful ones have not been loss of mobility or those kinds of things, although they’ve been terrible. Not being able to help, and not being able to be a full person in this house with the people I love who could have for years and years and years counted on me to be there when they needed my help.
The first loss was my vision. As I speak to you, I’m blind in the right eye, and my left has developed some serious issues. The result of all this is that I can no longer sit in front of my computer and write, or read. That I can’t read should’ve been torture for me, but because it happened gradually, I was able to adjust to it as it happened with the help of audiobooks. But not being able to read, specifically reading over my own writing has meant that I can’t write, or make notes. My good eye fatigues and I can never see my laptop screen properly. The kind of “writing” that I can do is by recording my voice on my phone, and relying on Christian to transcribe it for me. This is what I’m reduced to. That and also reduced to a very porous memory and a lot of difficulty keeping things very clear in my head. It’s a little more like Swiss cheese. The dreaded “chemo brain”, has evolved into “end of life pain management brain”. And so here I am trying to finish the blog, the final blog of this journey and having been robbed of most of the tools to do so.
This same cocktail of drugs that goes into me also has the effect of making me feel sleepier. Its delivery mechanism is ingenious, though. It’s just this little box that we put in a pouch, and this little box has a syringe in it that sends little shots of medicine into me every 10-12 minutes or so. I want you to know, to understand how many obstacles we’re trying to get over and around to get to the end of the story. Loss of eyesight, loss of the ability to write, loss of the ability to read and then mobility. Right now, I can still walk but I can’t get out of a chair by myself. I have to call and ask for help so that I don’t hurt myself. All of these things are more serious to me than any other loss.
Taken by Francis Séguin.
Nests
When people come into my room for the first time, whether it’s staff, whether it’s a mistake, whether it’s family or some kind of outside support, everyone reacts the same, which is that they let out, “Oh, my God! What a beautiful room!” At first, I thought, it had everything to do with the dozens of beautiful bouquets, and the collection of potted plants that I’ve received from friends, family, and even people I’ve never met before in person. And it’s true that people were struck by the flowers, by the color and the fact that it didn’t smell like that sort of cloying flower water that needs to be changed, but that isn’t the whole story. It was very subtle and lovely.
As time has gone by, the room has been decorated more and more by my sister Danielle, by Penelope and Graham, by everyone and anyone. Now, no matter which wall you look on, there’s something beautiful to see. My grandson, Graeme, must have spent a whole afternoon on a Sunday or Saturday creating a poster with all kinds of pictures of the times that we spent together, the three of us, and of course, all the other people they love. But the three of us, which means a lot to me. It’s important to mention that this feeling of walking into this room and everyone feels it’s warmth and everyone feels what a good place it is, thanks to the thoughtfulness of my sons, my grandchildren, my beautiful and talented daughters-in-law Anne and Vickie.
It’s a beautiful spot. It’s a beautiful nest. And I’m very lucky that at this time of year the birds sing right next to me through the beautiful bow window in my room. They are busy making families of their own. My own family is already made, and has been made for quite a long time, and is rich, and is deep, and, for a while longer I’m very happy to say, is mine. I can’t have more than four visitors in my nest at the same time, but I think that arithmetic applies to a lot of the birds outside too.
Tears
Tears have a different meaning for me now. They‘re often filled with a sudden and strong emotion—which rarely carries with it sadness.
It’s almost always beautiful or a little overwhelming: something more that my mind has brought up to the surface. All of a sudden, I get this lump or perhaps a cheeriness and something bigger than both. And I just hope that the people around me understand what it isn’t, and why I reach out to it all with such awe; with such eagerness.
There was one night, it was about two in the morning, I think, and I had woken. There’s a nurse here named Francis. If I say Francis, it sounds like a woman’s name, but Francis is very much a masculine French name. And he’s very young.
He’s twenty-three, which means that he was sent straight out from a CEGEP (from his college training). He got right smack into COVID in the worst possible circumstances because it would have been three years ago. Eventually, he worked his way back here to palliative care, where he’s extremely happy. He’s shy—as I was that evening—reserved and unassuming and speaks in a way that’s very soft, humble and quiet.
That night, he happened to come in when I had just started to cry. So, there I was, alone in the dark in my bed with sniffles and tears coming down my face. When he walked in, I thought oh, gosh, he’s going to see something that, first of all, I wasn’t particularly wanting witnessed, but secondly because, and I can’t explain it really, it just felt good to cry. These were strong emotions, a shedding feeling that came up and woke me out of my sleep. He had come in and he stood there and said:
I’ll say it first in French, “Vous savez Madame, des fois c’est juste une pensée qui nous fait pleurer… “ which translates to “You know, Madame, sometimes it’s just a thought that turns into tears like this.”
It was exactly right. He was exactly in the moment. Without saying anything more, he left the room.
This is an example of what it’s like to be here—the freedom to be.
Sunsets
This is the end of my story. The final chapter of my life. I am sixty-three years old. Two months away from my sixty-fourth birthday, and another year away from officially being a senior citizen. And you know what, that’s not too bad, isn’t it?
Here’s what I know: If you don’t get knocked off were the real is, where the true is, and where the love is, then you’re going to have a good life. Even if you suffer, even if you’re sick, even if you have pain, you’re going to have a good life.
I want you to know, every day that I’m alive, I’m super happy to be alive.
This happiness is not making me say “Fuck, fuck, fuck, I don’t want to let go.” That’s something. That’s a short time. Yes, I started in 2018—that helped—but four years ago I wasn’t anywhere near being where I am today.
So you can know, rest at ease, that I will have lived and died happy and at peace.
“I just stepped out of the shower—it’s Saturday morning—and it was the first one I’ve had since last Wednesday morning. These few days after chemo, when I can’t take a shower because I have to be careful of the infuser that’s hooked to me intravenously through my port-a-cath—these days feel long. Of course I don’t want infection setting into the catheter port, so I’m very watchful. This small device is extremely valuable to me.
I’ve watched battle weary patients in treatment or being prepared for MRI’s and CT-Scans for other long term illnesses who weren’t as lucky as I am, and who are limited to PICC lines, while others—people whose veins are in terrible shape—are simply made to endure the pin cushion treatment, by which I mean being stuck over and over by a nurse doing his or her best to get a needle into a collapsing, shredding or otherwise uncooperative, tired vein. Some close their eyes and resign themselves; some suck in their breath with every jab; some can’t help but make occasional moaning sounds…
When we’re all seated along the wall in the scan waiting space, in our colour-leached hospital nighties that make us all look even more wan and fragile, watching other patients go through the catheter insertion ritual is the only thing to look at. Some days are better than others for us and the staff.
The day after my Wednesday chemo, I really want to wash. I want that chemo/hospital smell and film off my skin. It’s like I’m carrying the miasma of the 15th floor with me, and the best I can do is run a hot bath, lay the fanny pack containing my infuser next to me on the side of the bathtub, pulling the fine, transparent tube attached to the infuser to its full length (about 18 inches) so I have some leeway, and just sit quietly in the blessed water, soaping my hands, legs, stomach…
That’s why, after my infuser has been unhooked on Friday afternoon, it feels so good to shower: to wash from head to toe. While I’m standing under the warm water—it has to be very warm and the shower curtains have to be drawn tight against the tiled wall, with no cool air coming in because otherwise I shiver and I’m uncomfortable—when it’s steamy and I can stay there for a long time and just feel the water streaming over me, I run my hands over my body, my shoulders, arms, and especially down the sides of my hips, feeling all the sinew there, the ligaments, feeling for muscle—all of it more exposed because I have lost body fat— and looking to see how much muscle loss there is because I just CAN’T be as active as I was and I just CAN’T do the kinds of things that I could do physically, before—and so I rediscover my body and the hidden parts of it—all these areas that you don’t touch otherwise, except when you’re washing yourself or are with a lover (or imagining yourself to be).
In a way, it’s taking stock of my mortality; of the creeping up of the day when I lose my life. And I wonder how many more days like this I will have, and if it isn’t easier to have these kinds of thoughts in the summer, when the sun is long in the sky and it’s very bright and beautiful, and I’m surrounded by greenery and flowers and the GARDEN and this lush, natural life around me. Maybe it is.”
Photo by Michelle Payette-Daoust
*****
August 21st, 2020
(Edited voice transcription)
“I woke up last night, as happens more regularly now, because I had to get up and go to the bathroom (this only began when I started treatment, I’m always voiding poison, it seems), and even though it was pitch black, it was probably 5 o’clock in the morning. But no matter what time that happens, I have trouble getting up because I can’t open my eyes. They’re glued shut by the gel drops I put into them every night (and several times during the day). During the night, the drops have time to congeal, and I have to peel my eyes open first, even if only to see in the dark. Last night, my feet hurt from the sudden weight on them as I made my way around my bed, from one bedpost to the next bedpost which is the one closest to the door and then to the bathroom…
And when I got back into my bed, still wearing my ear plugs—a habit I developed during those transitional years when women begin to believe that they’ll never have a full night’s sleep again—and lay in the dark, all I could hear was the sound of my beating heart. In the darkness, there was only me and the thumping that seemed to be right inside my head and also hidden in some dark cavern. I think I put my hand over the left side of my chest, and closed my eyes to turn inward, to feel that acoustic space inside me. Heart, are you damaged? What have these two years done to you? Is the rhythm you’re beating at slower than it should be? Or faster? What have I put you through?How long will you be able to keep this up?
And some time during this quiet listening, another pattern, pulled from recent memory, laid itself over the beats of my heart: it was the sound of the intravenous pumps in the chemotherapy ward that had come to mind. Mechanical, but disturbingly synchronous. .
My chemotherapy session last Wednesday, August 26th, marked the FIRST TIME IN TWO YEARS that I didn’t receive Nivolumab. I’ve been thinking about metaphors that capture the feeling I have: being in a car without a seatbelt; being in a boat on the sea without a life jacket; betting money I don’t have…Something discomfiting, in any case. For the two years I was taking Nivolumab, I felt protected. It was an illusion, of course, but I was very lucky— it wasn’t disproved.
Last week, when nurse Chantal and I got together for my usual Monday pre-chemo checkup, we both felt it necessary to reach out to each other and to acknowledge that the past two years have meant something. We spoke of it. I offered her a gift; a memento. I let her know how wonderful it would be if I lived long enough to be there when she retires (in 4 years), because that would mean that we could move beyond the boundaries of caregiver/care-receiver—that we could be friends.
It had also become clear that after 8 consecutive months of treatment (my last break was at Christmas), I was worn down and becoming depressed. And that’s why I find myself, at this moment, in the first of 5 weeks of “vacation” from chemo. I will have to go into the CHUM on September 15th for my scheduled CT-Scan, but otherwise, I’m free of the physical battle—if not of the thoughts—of cancer and its treatment.
What do two years of cancer treatment look like?
Well.. they look like:
the hundreds of containers filled with medication that was prescribed for me;
The dozens of Salinex vaporisers I needed to hydrate my nasal passages and prevent pain and nosebleeds;
The half-empty containers with the remnants of prescriptions whose dosages had to be increased (like my Synthroid), and others that had to be decreased or even better, that I didn’t need to take, like extra cortisol and something with the scary name of APO-PROCHLORAZINE, for nausea, which I think I took twice in the early stages of fall, 2018 and never had to take again
Boxes and boxes of ocular liquid gel;
All of the different cannabinoid products that I tried after consulting the people at Santé Cannabis, but that, sadly, didn’t have much effect on me.
I decided one day to keep as many containers as I could, just to see them accumulate; just to give shape to the reality of the experience. Yesterday, I laid them all out on the dining table and took photo of them before sending them to recycling.
I hope the next 5 weeks help restore some of my vital energy and mend my body.
I plan to ask for more regular breaks from now on.
The book mentioned that at the funeral for the lost twin baby, Raymond Carver’s short poem, “Late Fragment”, was read.
This time, however, before I had even reached the escalator landing, I could see that there was something crowding everyone (they all seemed bunched up) and creating shadow. When I reached the top at last, I was met by an 8-foot high, 25-foot-long puffy pink tube, with lumps and bumps here and there on its surface. This was the monstrosity that was responsible for making seating far scarcer than it should be. When I walked further into the hall and found a spot to sit (I shared a table with a nurse who was on her lunch break), I realized that the big pink tube was a shadowy tunnel that people were visiting. But what I felt when I read the signage in front of it…
On Tuesday, April 15th, Notre-Dame de Paris, one of France’s greatest buildings and symbols, burned.
Rereading these paragraphs, I see how much Me-Me-My-I is in them, and it’s unsettling. Just a few days ago, I finished Nina Riggs’ The Bright Hour: A Memoir of Living and Dying. It’s a compelling, difficult book because Riggs wrote it while she was dying of metastatic breast cancer that spread to her bones and lungs over a period of two years. She barely reached the age of forty, and left behind two preadolescent sons.
Well.
REEF 