THOSE WHO CAN SMILE IN TROUBLE

PART OF THE THIS IS THE MOMENT SERIES.

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.

Hepworth, Barbara; The Hands; Bristol Museums, Galleries & Archives; http://www.artuk.org/artworks/the-hands-188595

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 of pain, 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?

Winnett, Keith; Lazarus Breaking His Fast; Herbert Art Gallery & Museum; http://www.artuk.org/artworks/lazarus-breaking-his-fast-55132

 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

Chaston, Edwina; Letting Go; ; http://www.artuk.org/artworks/letting-go-244278

AT THE END OF THE DAY : recent observations from chemo base camp, part 2

PART OF THE THIS IS THE MOMENT SERIES

September 20th, 2018

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 at John 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:

  1. Nivolumab 240 mg, IV
  2. Decadron and Zofran  : 2 capsules each, orally, pre-emptively, to control the nausea that’s cause by Avastin
  1. Avastin 320 mg , IV
  2. Leucovorin 704 mg, IV
  3. Oxaliplatin 150 mg, IV
  4. 5 FU (Fluorouracil) bolus *
  5. 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-1 monoclonal 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.

Innes, James Dickson; Arenig Mountain; Glynn Vivian Art Gallery; http://www.artuk.org/artworks/arenig-mountain-227067