CUBICLES OF HEALING AND PAIN: Notes from chemo base camp, part 7

PART OF THE THIS IS THE MOMENT SERIES

December 10^th, 2018

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 15^th 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.

Conroy, Stephen; The Garden; The Fleming Collection; http://www.artuk.org/artworks/the-garden-218248

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.

Shackleton, William; Wings of Silence; Leamington Spa Art Gallery & Museum; http://www.artuk.org/artworks/wings-of-silence-54462

CUBICLE 17

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.

Sims, Charles; My Pain beneath Thy Sheltering Hand; Bethlem Museum of the Mind; http://www.artuk.org/artworks/my-pain-beneath-thy-sheltering-hand-192943

CUBICLE 16

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.

Hodgkin, Howard; Silence ; Victoria Art Gallery; http://www.artuk.org/artworks/silence-229837

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.

Boisseau, Annie; The Moon is Hanging in a Purple Sky; University of Surrey; http://www.artuk.org/artworks/the-moon-is-hanging-in-a-purple-sky-231140

* * * * *

“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

 

HAZMAT HOME- Emotional side effects part2

Part of the THIS IS THE MOMENT series.

November 29th, 2018

 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 4^th 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…

Dickson, Rodney; Sickness; Atkinson Art Gallery Collection; http://www.artuk.org/artworks/sickness-66470

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.

Cairns, Joyce W.; The Wounded Heart; Glasgow Museums; http://www.artuk.org/artworks/the-wounded-heart-83450

 

 

 

 

 

 

 

 

 

 

 

 

 

EMOTIONAL SIDE EFFECTS

Part of the THIS IS THE MOMENT series

November 25th, 2018

 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.

Pearce, Rodney; Mother Figure; Cheltenham Art Gallery & Museum; http://www.artuk.org/artworks/mother-figure-61968

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.

Dewan, Indra; Mother and Child; Art & Heritage Collections, Robert Gordon University; http://www.artuk.org/artworks/mother-and-child-105357

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.

McCall, Charles James; Pensive Woman; York Museums Trust; http://www.artuk.org/artworks/pensive-woman-8323

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.