“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.
It isn’t always easy to figure out why we feel the way we feel.
If you had bumped into me two weeks ago, and had been able to see through the facade I was presenting to the people whose days I didn’t want to ruin, you would have understood immediately that I was fragile, and probably tired. You may even have perceived fear and discouragement. You would have been right.
Why this was so is both obvious and mystifying. Getting through winter, through the pandemic, treatment, and through the aftermath of the cornea transplant I underwent just before Christmas requires energy that I was running out of.
When this happens, the breach that is always there widens, and the worst thoughts you could have come out and make a mess inside you.
Whispering in my mind was a voice telling me that my cancer had probably started growing, I felt like those tumours were now expanding inside me. I know that eleven days after my last chemotherapy treatment, I still felt so tired…And, too, you have to live every moment you have that offers life and joy, but you also have to be ready for the day when the wheels fall off. I thought that day had come.
Still, you can’t live with a mind stuffed full of dread for too long. But where does the spark come from that leads to change? How does the light that casts a hopeful glow on everything around you appear? What is that mechanism all about?
I think it happens by accretion. Small, positive, good things become more visible. I think they may even come knocking. I’m still figuring that out.
What I know for sure is that through this bleak period, the people who love me kept loving me. I know that the phone calls I have with my mum–more frequently than ever before in my life–always make me feel better than before I call, and I’ve been making it a practice to call her more often because I think it does her good too. I know that my friend Louise C who is my partner in our daily blog,Aubade, continued to Message me every morning with a quote that matched her mood and her hopes–leaving it to me to post it along with evocative images. I know that my best friend Loulou called me regularly and we talked about our discouragement that a year into COVID, we still can’t hug our grandchildren, but also about simpler, everyday things…
And then, one day online, I connected with Charles, my brother-in-law who lives on the West Coast and has had a very tough year. He was, as he ALWAYS is, sending me messages full of kindness and intelligence, He is a man of many abilities and interests, and one of these is writing. And THAT’S when I had this flash of inspiration that led to what I’m now calling THE HAIKU EXPERIMENT.
I’ve tracked the genesis of The Haiku Experiment to February 24th (just a few weeks ago!), when I floated the idea to Charles and…well…he accepted! And that’s when the fun began. My old habit of finding images that matched some of the things I write (at REEF, at Aubade, and sometimes just on social media) is so ingrained that when Charles sent me his first haiku attempt, I matched it with a painting and then posted it. It got lots of online LIKES. And it was fun.
Soon, I was writing haiku, as was Charles, and Loulou (in French), and Hadi and Gail…And others were commenting and expressing delight and encouraging us to keep going! Charles was literally receiving requests! And then Patty asked if she could try, and yes was the answer and so she sent hers in as well. The rules are not true to Japanese haiku, and that’s okay. Five spoken syllables, then seven, then five again was enough of a challenge.
Yesterday, I spent part of my time with Hadi, who was once my French student, and who is now simply a friend. He is also brilliant, and, in his spare time, a visual artist. Turns out he’s also pretty good with the haiku form. He first sent me a longer poem written a few years ago, and then showed me how he could trim it to create a haiku. Back and forth we went, figuring out everything that had to be left behind by Japan’s verbal equivalent of bonsai. What was left on the page had to be beautiful. Hadi’s mother tongue is Farsi but he also speaks English, French and probably several more languages.
See what you think. Here is the original poem:
Today I saw a girl
Wearing the scent of flowers
Collecting flower pictures in her bag.
She stole the sunlight from trees
Took the colours from flowers
Absorbed it all Fall’s let her leave with souvenirs
And I let her go
Before the sunset.
And here is Hadi’s haiku:
Today I saw a girl
She stole the sunlight
Wearing the scent of flowers
Sunset let her go
ART: Hadi Nejad, “Roots of Setting Sun”.
Here is a sampling of what a handful of people created because it was fun; because of COVID; because it felt great.
Swiftly glide on edge
Scarring the glassy surface
Freedom is the ice.
(By Charles H).
ART: Ice Skating on a Lake Patricia Hofmeester
I ask myself now
How light should my footprints be?
Like breath on cold glass.
(by Michelle Payette-Daoust)
ART: Stock image
Each lighted snow flake
Revisits the halo
of Narnia’s lantern.
(By Gail R)
Photo by Gail R.
Perles de pluie suspendues
Les perles, évanouies!
The just got it done
Stemmed the flow on Moose Creek
Working like beavers
(by Charles H,)
ART: “Spring Flood”, Mark Kremer
Dazzling bright sunshine
Daggers liquefy and fall
Winter’s rest ending.
(by Patricia B.)
There are dozens more that I could post, but I think I’ll sprinkle the rest of them throughout my posts from now on…as long as the supply lasts.
Do you begin to see what magic was working that pulled me out of myself and my fears?
And then Patricia sent me this haiku, written by her friend Jack, A very moving, personal poem:
It was on this day
You were never to come home
I came home alone.
ART: “Solitude”, by Daler Usmonov
On Monday, March 8th, I was back at the CHUM for my biweekly visit with the oncologist and the usual pre-chemo blood tests. I also knew that I would be getting the result of my most recent CT-Scan. You know what I was thinking. How do you gird yourself for frightening news?
I’m so happy to say that my worrying and sadness were misplaced. The tumours, it appears, after more than two and a half years of treatment, are still shrinking. Everyone was smiling. A reprieve. Something to write home about.
Poem: THE HAIKU EXPERIMENT, by Michelle
The other day I decided
(it really happened that way)
To invite others
(friends and their friends)
To open a door they mostly keep locked
(sometimes it’s so small, they forget that it’s there)
To my surprise, many dared
Some with a whoosh!
Some with hinges that needed coaxing
And from all those doors swinging open
Words streamed outward
Like birds of a feather
(though a few, carrying pain, chose the shelter of the clouds)
When December arrived, my body had reacted so favourably to the research protocol: I looked well. My weight was super stable. My bloodwork was almost always really good. In the examination room, we were all smiles. Enjoying this happy moment, Dr. Aubin turned to the resident who was with her that day and said:
“Mme Payette est une patiente qui va exceptionnellement bien .»
(translated : « Mrs. Payette is a patient who is doing exceptionally well.”).
I smiled. It was one of those moments in a cancer patient’s life that’s like a cloudy sky opening up and revealing a blinding ray of sunlight.
I felt lucky. I felt unburdened for a few brief minutes. I felt…weightless and hopeful. I allowed myself to feel charmed. Blessed. And inside that ray of light, I even allowed myself to think: maybe I’m one of those people whose tumours just stop growing.
I carried that feeling around with me for a while. I shared it with my family, and I shared it with my mum, who, at 85, and trapped inside her house by COVID-19, was in need of good, happy news. I’m okay. All is well. The slightest of white lies from daughter to mother.
But it’s not good to get ahead of one’s self. I should have known better. I should have taken some positivity away from the doctor’s encouraging message, discreetly, and then made sure my feet were firmly on the ground before continuing treatment.
What concluding the infusions of Nivolumab has allowed me to do is learn from my body, and begin sorting through which medications were and/or continue to be responsible for certain side effects. For instance, I think I can confidently say that Nivolumab was responsible for the muscle weakness and joint pain that had been increasing for months, because since last August, these have subsided and I can move and squat and do physical work almost painlessly now.
Still, I should have known better than to escape into believing in magical outcomes, because the need to live outside of cancer, even briefly, left me vulnerable when, in sync with the pandemic, I was hit by unrelenting waves of side effects.
* * * * *
Throughout last fall, my eyesight worsened. Not only sunlight, but even lamplight burned my eyes. If I had sprouted fangs and begun hissing, I couldn’t have acted more vampiric. It was crippling. Concerned and cautious, Dr. Aubin requested an appointment for me at the ophthalmology clinic, my third since I became an oncology patient. It was booked for December 18th.
Meanwhile, a second problem had been building momentum: for weeks, I had been experiencing spasms in my right trapezoid muscle—a large muscle that starts at the neck, branches out to the shoulder blade and reaches down to the middle of the spine. The cramps had been worsening and were nearly constant.
On the 18th, when I was called to wait in the ophthalmology examination room, on a chair designed to keep you still and straight-backed while the doctor places a treelike apparatus of lenses, lights and supports in your face, my back spasms had become so fierce that it was as though I was being zapped by a taser over and over and over—as though electrified tentacles were firing into my back.
The resident doctor arrived (you always see the resident first), and spent a long while asking me questions while he blasted light into my yowling eyes (if eyes could yowl, that is). After a period of uncomfortable silence interrupted only by requests to “please try to keep your eye open” (futile), the resident physician said: “Mais Madame, vous avez un trou dans votre oeil!” (“But Madam, you have a hole in your eye!”).
What on earth could I say? This didn’t sound very medical to me and I had no idea what he was expecting me to say…though the fact of my being there in that chair spoke for itself, I thought…
I realize now that what he had read in my file—something like: Patient complaining of photosensitivity in both eyes—didn’t prepare him for the gravity of my situation. After all, this had come up twice before in the first year and a half of treatment, and both times, I’d been sent home with a list of over-the-counter eye drops that I was told should do the trick of moisturizing my eyes. That information sat in my file, and no follow-up was ever booked by any of the ophthalmologists I saw.
Off he went to get the ophthalmological surgeon, Dr. Louis Racine (remember that name—he’s brilliant). When the latter entered the examination room, I was still seated in the dark, besieged by back spasms and slowly retreating into shock. He immediately set to work, and just as I was about to ask him something, he said (in French): “Madam, I’ll ask you not to talk. When I’m done I’ll answer every one of your questions, but for now, I’m trying to save your eye.”
How can I explain what it was like, sitting there? When I left the house that morning, it was with the expectation that I probably had a blocked tear duct, caused by the construction going on at our house which had sprayed so much plaster dust everywhere. I thought this because my right eyelid had swollen a few days previously, and my eye was constantly leaking tears. I had been distracted by the back spasms that were getting worse.
And this same Thursday was also the day when Cindy, a beloved family friend, was moving in with us, into the addition the builders had just about completed. Both she and Simon quite literally had their hands full and in any case, because of the COVID lockdown, I was still not allowed to be accompanied to the CHUM.
Shortly after, Dr. Racine informed me that both of my corneas were in terrible shape, so dried out that the right one had perforated, and the left one was on the brink of sharing the same fate. I was dangerously close to becoming blind in at least one eye.
Faster than I was able to process, I found myself in a different room in the ground floor clinic, lying on a gurney. A different resident was attending Dr. Racine and it was clear by his hyper deferential manner, that Dr. Racine (though young!), had his respect and a lot of clout.
What was done to me that day was this:
As I lay there, fully conscious, afraid that my back spasms would make me move despite my best efforts to stay immobile, Dr. Racine cut through the surface of my cornea, saying “Ne bougez pas” (“Don’t move”)—all the while giving the play-by-play of his actions to his colleague—removing the useless tissue and closing the hole by gluing a temporary contact lens over it.
ART: “Breathe”, Sara Young
I’ve seen dogs and cats who are usually filled with kinetic energy go docile and still as stone when taken to the vet. I understand them. I have rarely felt so vulnerable. My situation unravelled so quickly, it was all I could do to keep myself together and not cry. I kept quiet. I made my life at that moment into the smallest, most stripped down existence possible.
And trust in this man who had inserted into my right eye a lens with a bright blue fake pupil that made me look like a cyborg. It was scratchy and irritating. He covered it with a protector and then we went back toward the examination room.
Minutes after, he sat at the computer saying (always in French): “No, not Saturday…Sunday? No…Okay Tuesday!”. Then he turned to me and said: “Next Tuesday, I’ve booked you for corneal transplant surgery. You’re going to be okay, you know.”
Or something like that. And then he put his hand on my shoulder and said: “With everything you’re going through, you could have done without this, couldn’t you?”
And instantly, I felt like a woman, like a person, and I was flooded with a sense of relief and gratitude.
The transplant was done as planned, on the following Tuesday, with my son Jeremy parked in the CHUM basement waiting for the call that would allow him to come and get me. I came so close to blindness.
* * * * *
Since then, I’ve been getting a big fat dose of what it’s like to live with a single functioning eye; how it throws off your ability to judge depth and distance. And I’ve discovered that there is a sympathetic link between our eyes, so that when one is burning and struggling to stay open, the other tends to do the same thing…
I’ve had my first Christmas baking experience with limited vision. I’ve become adept at getting 4-5 ophthalmic medications to drop, bullseye, right into the centre of my eyes (yes, BOTH eyes because my left cornea was just at the point of tearing, too).
Not long after, my back spasms reached a level of such intense pain that for most of January, I’ve been taking anti-inflammatories, more powerful muscle relaxants, short-term pain control to block the signal between the muscle and the brain (or it might become a permanent pain pathway), in addition to all of my eye meds.
The people at the pharmacy all know my name. I get great service.
* * * * *
What caused the destruction of my corneas?
It seems likely that it was a chemotherapy drug, because I had never had any such issues before, and they only appeared after treatment started.
I’m scared, because even as I try to do everything I can to help my eyes to heal, I am still ingesting the poisons that have damaged them. When I saw Dr. Racine this past Monday, he was disappointed in the slowness of my eye’s healing. I’m now wearing a contact lens over my right eye, in the hopes it will speed the healing of my cornea. Otherwise…Oh, never mind. You know enough.
And what of the muscle spasms?
Well, three days ago, I went back to the CHUM (the day after I saw Dr. Racine), but this time to Nuclear Medicine, on the 8th floor, for a bone scan. The entire procedure takes 4 hours.
Dr. Aubin should have the results when I see her next week.
* * * * *
So? Do you believe in jinxes?
I’m still inclined to say no, even though I am definitely NOT doing exceptionally well.
I have missed reading terribly (but recently, I’ve been able to). I have missed writing terribly (but today I’m diving back in with a vengeance). I miss seeing friends and family (even if only with one eye) terribly. But that’s COVID 19.
But I don’t think I’m jinxed. Not for a minute.
I feel so grateful to modern medicine and to the health care professionals who have steered me through so many dangers and threats.
I am grateful for my eyesight, fragile though it may be. I am grateful for Dr. Aubin, Chantal, Dr. Racine and all of the nurses who work on the chemotherapy floor.
I love my family, my relatives, my friends –near and far.
I LOVE THEM.
Maybe BREATHE, ACCEPT, BREATHE, ACCEPT, is the very best thing I can do.
Written between September 20th and September 28th, 2020
A small red plastic laundry basket has been sitting in the corner of the den for months. Simon brought it up from the basement during one of his valiant efforts to create and maintain order amongst all of the stored stuff down there.
The red basket was a holdover from moving day. It has long resisted being displaced again (I don’t blame it). I remember it from that day in early July 2018, because it’s one of the very last things we filled. I think that it was Vickie, my beloved daughter-in-law, whom we’d known only four months at that point, who loaded it up with some of the last objects taken from my dresser. She was exhausted, her head and hair slick with sweat (it was 34 Celsius that summer day), but she left nothing to chance. I love her for it.
Then it was plunked in the new basement. Waiting. Waiting. Have you noticed how, if objects stay long enough in one place, there’s that risk that they’ll simply meld into the background, put down permanent roots, become invisible? But not with someone like Simon, who, from the first week in his new house, vowed (I feel sure this is true) that he would not make the mistake of burying himself alive under the weight of STUFF, ever again (a sentiment I am completely on board with). EVER.
So, after at least 18 months of internal foot-tapping patience (with me), he brought the red basket up to the ground floor, into the room where we congregate at the end of the day to watch movies and videos and all the streaming rest.
“Tiens Maman,” he said, “you can look at this stuff and see what you want to keep.”
It wasn’t a big priority for me and I barely looked at it for weeks that became months. And then, just a few days ago, probably because this long-ish break from chemo I’m enjoying has given me more energy, I picked it up, settled it on the coffee table, and started emptying it out.
Really, to any eyes but mine, the red basket contained bric-a-brac as indistinct as any box of junk you’d find in the back room of a thrift shop. Most visible were a thick, white and purple plastic bag—the kind commonly given, not so long ago, to customers of small stores—its contents undisclosed; a slightly beat-up, transparent plastic Ferrero Rocher box filled with mystery items; a strange looking, brutalist mosaic like an undersized, square dinner plate, and a small, carved, gilded wooden box with the appliquéd image of a Madonna on it.
My relationship with objects has changed so much since my diagnosis. They’ve become supercharged with the weight of memory and of meaning. Having left so much behind, I’ve come to realize that many of the things that made it through my move have remained with me because I feel as though parting with them might cause a break in my timeline, like removing a piece from a carefully set up domino run. It’s as though what I’ve held on to will need to say what I will no longer be able to say when I’m gone. Or maybe it’s also, and more so, that they will simply act as voiceless vessels of my presence.
That sounds horribly self-absorbed, but standing where I am, I feel that I want to leave traces; that it will be far less cruel to do so than to be snuffed out in one all-consuming flash. Of course, there are my books. I know that many of them—especially those I read during the past two years, and those I made a fuss about while I was enjoying them—will do that job, because I think they DO contain something of me, of my spirit, of my love. I’ve begun writing my initials and the year, 2020, into those I’ve ordered and read recently, hoping that even that simple scribble will transmit a gentle pulse when it’s read, and maybe evoke an emotional memory other than “the year of the pandemic”. Also, I smile at the mental image of family members—my sons especially—and friends holding one of my books to their chest. I like to think that at that moment, a spark of me will be there with them.
But you see, the fact of my books isn’t painful because they’re there for anyone. Books are meant to survive us and to pass through many hands. And that’s why I’m rattled by the small red basket. On the recent afternoon when I decided to start emptying it, I could have settled anywhere, but I chose to stay in the den, which is more cut off from the rest of the house.
Insulated there (while Simon was busy teaching online), I sat on the couch and looked at it. It’s strange that such an assortment of mementos should have wound up in it, because the basket itself has meaning. I remember it and always will because when Christian was 6 months old or so, I used to sit him in it, with some toys, so that he could be with his big brothers (who were almost 9 years old by then), watching them and being part of things, without the fear that he would tip over and clunk his head. It was just the right size for the job. It was, in a sense, his safe perch.
Why did I put off looking through its contents for so long? The truth is that deep down, many of the objects it holds reach back into time and have a grip on my heart. It’s a basket full of junk and oddments that I cannot part with.
Digging into the dusty mound, I retrieved my Bombardier ID lanyard, which was my security pass, required for all of the contracts over several years that I worked teaching French at different Bombardier plants and offices, to craftsmen, technicians, administrators and brilliant engineers from all over the world. It’s a strange object not to want to part with, but there you have it. A piece of me will always be there, in the spartan basement conference rooms of the company’s many buildings. How many have emptied out since then? What’s left of that great aviation mecca? It was my one and only lanyard, and it must stand in for a decade of teaching in adult ed.
I found Christian’s first I.D. pass, given to him at the age of three, when he was registered at the YMCA to attend preschool at L’École les Trois Ours. I feel sure that I preserved this, held onto it, because it was also the year that Sylvain was in England from November to the following April. Christian had just turned three when his dad left. I remember how anxious Christian was the first few weeks he was at the preschool. It was also a very different experience for me, because, having only raised twins up to then, Christian’s aloneness, in all its ramifications, became clear to me.
I then found my Concordia student ID card. My years as an undergrad were among the happiest of my life. It was a time when I felt alive and hopeful about the future. It was a time when I had the most freedom vs the least responsibility I would ever have again, and I knew it. Of all of the souvenirs that survived the passing of decades, this small card is one of the most unlikely.
Next, I dug out the mosaic. A sad and delightful thing, really, that Christian made while in grade school and brought home, dutifully, knowing that it was like most of the rest of the arts and crafts he produced in class—pretty awful (I write this with a smile and the most tender pang of empathy) . Christian, my youngest son, the artistic actor-writer, had a talent—discernable from the age of four—for creating square igloos, brutalist crafts, and a whole gallery of objects only a mother could love. And so, the mosaic is here to stay. I’ll leave its fate in his hands.
And then I pulled out the gilded wooden box –from one of my mum’s two sisters (why can’t I remember which one?)—that I secreted away in a sock drawer and considered my most precious possession for years. I treasured it as though it had been dug out of an archeological site. Perhaps it was the way it was given to me: by a person who would not normally have done such a thing; in a way that made me feel that I had been entrusted. Only the smallest, most precious treasures of mine ever saw its wooden insides.
Its last and most important prize were the Connemara stone prayer beads, a string of cubic green stones beautifully held together by a chain running along them like a spinal cord, and given to me by Mr. Sweeney, my high school English teacher, who also gave one to my sister Marie. It’s a beautiful piece. I spoke of it to my sister today on Facebook, to confirm a few details, and that she had one too, and she answered: “Yes. Either in my jewelry box […] or souvenir box. I think that’s where they are. Green. You make me want to check.”
She found it. She had even preserved the original modus operandi it had come with, which explained:
AN PAIDRIN BEAG
(The little rosary)
This is a replica of the single-decade Rosary used in Ireland in the Penal days.
METHOD OF SAYING
Place the ring on the thumb and commence the recitation of the Rosary in the normal way.
On completing the first decade move ring to first finger and so on for each decade.
Made in the Republic of Ireland.
We’ve held onto our Paidrin Beags for 45 years, and in spite of the fact that I no longer consider myself to be Roman Catholic, I have always felt a spiritual energy when I hold it in my hand. So much so that I often reached for it, in the dark, in the dresser drawer next to my bed, and pushed my thumb through the loop and held the chain of stone cubes tightly in my hand. To calm me. To connect me to the incomprehensible vastness, and to the source(s) of goodness, love and belonging that you might call God, or nothing at all, though I believe that any object that allows one to focus one’s most true and loving intentions is serving a spiritual purpose—even if it’s found in a tourist trap.
The next object I pulled out of the red basket was a framed reproduction of an adult hand supporting a tiny baby in its palm, next to which hovers a protective right hand…
My Mum gave it to me in January 1990, saying that it had been amongst my father’s possessions. She gave it to me when my son Gabriel was stillborn at 28 weeks, just a few seasons after my father’s death. It’s the only representation of my third son that I have. And it’s a repository for the deepest sadness I’ve ever known.
* * *
There are a few things that were tossed into the red basket on moving day that were just junk and will not last much longer here, but a shiver of relief ran through me when I retrieved the dark brown plastic wallet insert that I carried with me from grade school age, and that contained photos of my friends: strips taken in the photo booths that were such a fixture in shopping malls when I was growing up, and other such head shots—thumbprint size. This is my longest held treasure. I had lost track of where it was…hadn’t looked in the red basket since I arrived here, in my new home, in my new life.
Sitting in the den, I unfolded it. It has always felt talismanic. It opened in a downward flutter aided by gravity, unraveling one plastic compartment after another, photo after photo…And, oh! all those faces of my childhood and adolescence!
Photo booths made it so easy, even for preteens, to preserve moments in time. Many of these young faces were the most important of my youth, and tied to each of them are so many stories: of the terrible and awkward ways we failed each other and of the trusting, naïve and intimate ways we forged friendships.
The two best friends I ever had, right into early adulthood, Lesley-Ann and Laurent, are there. I could write a whole book about them, I think. They were buoys at times in my life when I might have otherwise drowned. Lesley-Ann was lost to me through circumstance, and the hole she left behind is still here, inside me. I had forgotten these two shots of her I had; I could barely breathe when I looked at them. Lesley-Ann. I missed her so much. But I have reconnected with Laurent since our high school days, and that complicité, that unique closeness that was always ours, is still there.
I see, now, that in my youth, they are the only people I allowed to truly know me. I believe, now, that that made me a better person. When I think of them, I think of how much we laughed together.
I don’t know that I’ll be able to throw out any of these mementos.
It’s not as though I expect my children to hold onto any of them. I imagine they may spend some time just looking at them after I’m gone, but these things have no resonance for them other than that they were mine. They are just stuff. They do not carry, for them, the multitudes that they carry for me. And so be it.
A good friend of mine recently told me that, upon her 70th birthday, a close friend of hers had started sending her most beloved CDs to the people she knew would enjoy them—tokens of precious bonds. In a world that includes Spotify and the like, it’s a sweet anachronism to do such a thing. Inspired by this nostalgic act of kindness, my friend has begun delivering (well, at least pre-COVID) and mailing carefully chosen books from her large inventory, one or several at a time, to the humans who people her world and her great big heart. She has even gifted several of them to me.
I know that we are not like birds, most of whom spend their lives in flight, moving back and forth between promising habitats, stopping for periods just long enough to build their nests, have their offspring and then move on, travelling light; holding onto nothing but the ability to navigate in the open sky.
But even the most nomadic among us, the Pico Iyers of the world, do, eventually, find it necessary to stop and put down fledgling roots somewhere; and do possess treasures that we bring along to the places where we choose to live, because they remind us who we are, and who we’ve loved and continue to love.
“I 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.