ABOUT RANA

PART OF THE THIS IS THE MOMENT SERIES. 

May 30^th 2019

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.

Photo by Ashley Perreault

 

FOR THE SAKE OF SURVIVAL

Part of the THIS IS THE MOMENT series

May 1^st, 2019

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 4^th 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 14^th 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.

Carson, Rosemary; Patients Waiting to See the Doctor, with Figures Representing Their Fears; Wellcome Library; http://www.artuk.org/artworks/patients-waiting-to-see-the-doctor-with-figures-representing-their-fears-125800