“THIS IS THE MOMENT” 2018: About living with the cancer that has entered my life
A separate space dedicated to my journey through the aftermath of a cancer diagnosis, which I received in late June 2018, featuring the stories that arise when the future is no longer projected in decades, but in moments and breaths.
“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.”
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.
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 out, jungle-like,
ready to claim the sun. **
the rain pours noisily
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—
(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
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.
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.
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.
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.
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.
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.
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. »
“[…] 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. »
“Me, I strive to communicate, because it’s what allows me to get closest to the people I rub shoulders with every day.”
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. »
“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.
“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. »
“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:
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:
(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.
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.
* * *
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. “
* * *
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.
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.
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
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
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”
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.
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:
“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.”
“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”
“We all wept for joy and the doctor handed out tissues, again, but for different reasons this time!”
“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.”
“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.”
“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. […]
* * *
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”
My response, same day
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. “
* * *
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
“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!”
“FANTASTIC! I love it. Tell me…did it inspire you both? It’s quite lovely.”
“It is a big step from inspiration to happening!”
“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.”
“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.”
“Well there you are. Glad you and Jan could enjoy it. You haven’t been there very long!”
“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!”
* * *
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:
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.
* * *
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
“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…”
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?”
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”).
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.
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.
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.
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.
I woke up at 5 o’clock this morning, feeling the effects of the 5 FU (Fluorouracil) that I won’t be getting tomorrow during chemotherapy because it has surprised me and my medical team, with side effects that harken back to the early days, when I was at full concentration, which, over time, has been lowered incrementally by 6 % (at least I think that number is correct).
All this really means is that my body has been struggling. A severe recurrence of swelling and burning in my hands that are now difficult to close into a fist or do much else with painlessly, and their almost mummified skin which, when it splits open, turns the newly exposed patches into areas especially sensitive to the alcohol-based hand soaps I had to use 20 times yesterday at the CHUM. And, something akin to being desiccated from the inside: burning corneas and sinuses that ache and fill with mucus that seems to petrify on contact with air; the interior of my mouth swollen and heat sensitive and unable to produce much useful saliva.
When I awoke, all of this hit me, all of the discomfort at the same time so, rather than get up and quite likely wake Simon up if I moved around, I stayed put and entered a cycle of trying to fall asleep, almost succeeding, being awoken by snorts that I was responsible for with my saharan nasal passages (so undignified), and starting over again…
(My complaints are now officially finished)
At 9 am, just minutes ago, my phone pinged (with an interesting COVID-19 related article link sent by Simon), and I looked at the time, and here I am. I dislike feeling that a few extra hours of life, bright and early life, escaped me. I am so happy to greet each morning.
But I didn’t awaken to a quiet house because Simon is at home, teaching his college-level biology students online, holding office hours online, orchestrating “labs” online. Minutes ago, he was online with a student, and though I couldn’t hear everything—the door was closed and their voices slightly muffled—I could hear the younger man’s voice, and his questions, and I could make out bits of Simon’s data-supported answers. Simon was clarifying some of the confusion surrounding our coronavirus infection rates in Quebec, and why our numbers are what they are. They bantered back and forth and I could hear understanding in the student’s voice, the deliverance of knowing more, of making sense of the mess out there…
He seemed a lovely young man. His teacher, my son, is only 36. They are in it together, aren’t they? Their individual fates will play themselves out in much the same time-space.
Sitting here, it also occurs to me how different the two obvious threats to my own life are. Covid-19, a virus, is an INVADER. It’s out there, in other bodies, in the droplets that the latter produce when they sneeze and laugh and spit. It covers surfaces for a brief while before it dies. It attacks other people’s bodies and, if given a chance, will do the same thing to mine, because it is ALIVE and seeks to remain that way, and needs “living vessels” to do that. It can also mutate.
And this, from a human standpoint, makes it merciless. It’s alien and aggressive and our bodies single it out quickly and attack it ferociously, and we humans feel terrible in this predicament of having become a furious battleground. But it also offers, in most cases, the very strong likelihood of our survival. Death rates from COVID-19 are between one and ten percent, I think. It depends more on where it emerges and how prepared humans are to treat it. So we hate it for the fear it causes us, and the terrible loss of life that any percentage ALWAYS represents, as we wait for our bodies, all of them, everywhere, to win this fight to the death, leaving behind a life-altering perspective on the precarity of human civilization; bringing about, I HOPE, a sea-change in human attitudes toward each other and the life that surrounds us. What matters; what was only ever superficial and ephemeral; what can be taken away by a microscopic pathogen doing what it is programmed to do, nothing personal.
And then there is cancer, my cancer, which, in contrast with COVID-19, is NOT an invader, is not alien. Whose purpose is NOT to harm me. All of our bodies contain cells that can potentially change just enough to make us sick as they continue to reproduce and make more dysfunctional cells, as though they are the one and only cells. Mine were able to reproduce and cling to each other and sustain each other for a long while before I felt ANY ill effects whatsoever. YEARS, in fact. My body supplied them with everything they needed, not sensing that they would, in time, kill me. My cancer cells have no “reason” to kill me: they just could, and likely will. Sooner than I would wish.
And yet, when humans see a person whose complexion is sallow, often yellowish, whose hair is thin or almost gone, whose weight has dropped visibly and whose clothing just hangs on their shrunken body or who seems to be in constant pain, we feel as great a fear (perhaps even greater) of them and their sickness as we would of a person with flushed cheeks and a cough (though probably not these days). And we feel revulsion. We would prefer to occupy a minimum safe distance. But we don’t become hysterical, run out to hoard toilet paper and medical masks, and buy up so much more than what we need and what is our fair share.
We are each other’s keepers. Have we begun to internalize this deeply yet?
My long commute to the CHUM and my time spent there allows me to observe the emptiness of our city under lockdown. What it means to be living without life around us. Large cities spell this out in the most awful way. Montreal has become an architectural ghost town. The buildings still reach up to the sky, still posture and preen for our attention. But they mean nothing, until you remember that at least some of them, apartment and condo complexes, are actually human hives—swarming with social beings trapped there for a while yet.
When I reach home in Hudson, its birdsong and plant life—it is spring after all and nature is bursting with reproductive energy— remind me instantly that life is everything. Not objects, not buildings, not a pantry or garage overstocked to the point of bursting with hygiene products, flour and sanitizers.
Life. People. We miss each other! We miss being touched by each other. We miss the astonishing, reassuring proximity to each other. And we’re learning to live in a decelerated, hushed world.
The appearance of a person at the end of the road with cancer very much resembles the appearance of things that humans have done to each other. That is, the way we found humans in prisoner of war camps and concentration camps, or exhausted and hollowed-out refugees, eyes wide in the dark, piled into boats like so much trash: emaciated, starved bodies that can’t take any more suffering. And maybe that’s part of what terrifies us about cancer: it’s also a reminder of what we’re capable of doing to each other…
But when we enter stores and empty out the shelves, piling our carts full of “stuff”, to the detriment of everyone else around us, not caring; shoving, pushing, losing our shit in parking lots and aisles, then I think we’ve become cancer cells too, and it’s a horrible thing to witness: each person-cell seeking only its own survival, oblivious of the needs of the community—the social body. How ugly is this breakdown of human solidarity and this intensely focused desire to self-protect!
At the end of their lives, people with very advanced cancers, they just fall…they fall from life, the way the leaves on the trees do in late autumn and early winter.
I’ve been away from THIS IS THE MOMENT for a while. This past month, I’ve been thinking that if ever I succeed in shaping these pieces into a book, that it will have a long title, It will have to be named:
THIS IS THE MOMENT
Cancer, Chemo and Covid-19:
Two improbable years in a clinical trial
It’s certainly the alliteration that rocked my world. I wonder if the best portrayal of the person I was when I was diagnosed with stage 4 cancer in July 2018, is of a woman with training wheels: not yet competent and ready for the ride ahead?
But 2020, my gosh, what a year so far! Four months in, and I don’t dare look around the corner—which I think is a reasonable response.
* * *
In February 2020, Covid-19 wasn’t yet a familiar word. Instead, I was hearing warnings and reports about a new coronavirus outbreak in China…so many miles away…But Simon, versed in epidemiology, already understood that something was up, and was reading the available scientific literature about it.
By the first week of March, the coronavirus had begun to loom over everyone and everything, as we were starting to grasp the fact that it posed a very serious, yet still mysterious threat. It was Spring Break in Quebec. Many Québécois were gone for the week: to ski locally, to see the sights of New York City, to the beaches of sunny Florida, to Europe and on cruises. They had, in fact, for the most part, picked the worst possible destinations. The worst infection zones. My cancer keeps me welded in place, so instead, we had friends and family over for dinners, my grandchildren for a full day of jewelry-making and baking and fun.
The news grew worse. The expression “social distancing” was read and heard more and more. My inner alarms had activated. I knew I had to go into Montreal twice the following week, to the CHUM, for my usual chemotherapy but also the standard pre-chemo blood tests etc. Two consecutive days: March 9th and 10th, and that I would have to take the train and the metro and hang around at the hospital for hours, both days.
It was a torment. The word pandemic had emerged by then.
And my innards began resisting. I felt chronically upset and anxious. More so than I’d felt since I was first diagnosed. I didn’t want to go into the city and take all of those risks, but neither did I want to miss life-sustaining treatment.
I went into the CHUM that Tuesday reluctant, resistant, frightened. During the preceding days, I exchanged several emails with my research nurse, hoping she’d say something magical that would keep me safe.
The week before Spring Break, the strangest thing had happened. My oncologist, Dr. Aubin, who is always gracious and kind, but who also weighs every word carefully, had greeted me in her office with the warmest smile. Bonjour Mme Payette, she’d said, and continued to smile. And after the usual questions about any side effects I might have, she’d simply said (in French): “I’m so happy. You’re doing so well. Really! Bravo!” , and she’d looked at the spreadsheet with all of the information gleaned from my blood work that filled the large screen of her computer, and had said: ”I’m really very happy for you. This is the Nivolumab we see at work [the immunotherapy drug|. And honestly, you can’t really be considered immune-suppressed right now.”
This never happens. This kind of unguarded, spontaneous revelation? Never. Reassurance that things are going in the right direction? Yes. That my tumours have shrunk almost 60% since I started? Yes. But this smile that revealed that, as an oncologist, this was truly gratifying progress (stage 4 cancer is at best a chronic disease)? Never.
For a few days, I got to live in an almost carefree state. Or at least, in a mind space that I could sprinkle optimism and a newfound joy into.
Ten days later, the human world seemed to be imploding. And still does. It’s a world smothered by Covid-19, the name of the virus we will all have been branded with, whether infected or not.
Daily catastrophic news and statistics poured in, and not so long ago, I found myself thinking: I don’t want to NOT die of cancer!
* * *
When I arrived at the train station early in the morning on Tuesday, March 9th, I was so stressed that I felt a bit sick to my stomach. There were two cars in the parking lot which usually accommodates more than a hundred, maybe even hundreds: mine and a blue one, side by side. It was 7:09 and I thought for sure that I wouldn’t make it up to the actual boarding area on time for the 7:10 train. But when I climbed the concrete stairs, the train was just idling there. Its doors open. No one in sight. Not a soul. A ghost train.
Unsure what was going on, I boarded, and saw a young man in the next car and felt immediate relief. And then the doors shut. Almost soundless. And the train started to move, with stealth. I was completely alone in my section. There were eleven stations left before I was meant to get off. I saw two or three people, at the most, get on at any of these stations. No one ever joined me in the section I had chosen. This should have been the most packed train of the morning. Standing room only. Rush hour. Instead, it felt dead. Post-apocalyptic. It took just a few minutes for my sense of relief at not being at risk of infection turn to a terrible, lonely feeling. I got a lump in my throat. I felt the urge to cry. I felt anguished. The part of my brain that Malcolm Gladwell wrote about in his book, BLINK, was signaling unease, unease, unease, something’s off, something’s wrong…
When I reached Vendôme station to take the metro, it was much the same.
At the underground entrance of the CHUM, again, near desolation.
It was as though the physical world had transformed itself into the way cancer made me feel during those first months and seasons of treatment.
The cues that guide us every day had disappeared.
Since then, I’ve grown more accustomed to this strange, empty world. I head into chemo alone now. Only the very weak, those suffering the most, are allowed companionship and that’s the way it should be. I miss Louise, my precious friend, who accompanied me so regularly, then drove me all the way home after chemo, and stayed for supper. But I’m lucky, my son Jeremy who is now working from home, has come all the way to the CHUM to pick me up and bring me home several times. I miss Christian, who often popped in on a day he wasn’t working, to keep me company.
Simon is here, teaching online. Keeping his energy up. Keeping me informed. Making delicious meals and, I’m sure, feeling starved of the physical company of the colleagues, friends and family he so happily mingles with and opens this home’s doors to at every opportunity.
In truth, my life has changed less than most people’s. I’ve been in training for the past 19 months, learning to stay put, monitor my health, avoid germs and stay out of harm’s way.
* * *
Last Monday, I had to return to the CHUM for my scheduled CT-Scan (every eight weeks, like clockwork). On this day, I waited a long time for my turn: several hours, sitting in a hospital gown, a catheter stuck in my arm, on a stiff plastic chair in a cool hallway staring at a wall. When I was finally called, I did as asked, and lay down on the sliding “bed” that is part of the scanner. And then the phone rang, and the technician told me without a shred of gentleness in her voice to get up, that someone suspected of having coronavirus was on the way, and I would have to go back to the waiting area.
And so I got up off the machine, and looked at this woman, and wondered why they couldn’t just do the scan which barely takes 5 minutes. And then I think I said (in French): Well, I’m not sure that after 19 months of cancer treatment, coronavirus is very good for me either…”
It wasn’t my finest moment. I was imagining the virus lingering in the room. It’s what fear does. And being cut off from fellow humans. And getting worn down.
I’ve noticed how, in the metro, the train, and all the enclosed spaces where we’re asked to practice “social distancing”, we’ve stopped making eye contact. We’ve reduced each other to mobile, possible threats to our wellbeing.
That incoming patient on the way to be scanned…
I don’t know who they were: man, woman, young, old. I don’t know if every intake of air into their lungs was agonizing. I don’t know if they were accompanied. But I’m sure they were scared.
I’m also sure that the CT-Scan technician has seen many such patients, and that the area she works in had to be scoured and decontaminated for the umpteenth time that day, that week, that month…
Her tone had changed when I was eventually called back in. Some of the stress had left it.
I will receive my scan results tomorrow. I want to say “as usual”, but those words ring hollow.
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?
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.
* * *
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.
* * *
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.
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.
* * *
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.
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.
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
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.
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.
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.
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