On Friday, July 16th, which was a beautiful sunny day, I drove to the CLSC in Rigaud (one of the local government run health clinics) to see my favourite nurse, Manon, to have my colostomy bag changed.
The objective is of course to have me able to change my colostomy bags myself as expertly as any of the nurses or dedicated stomothérapeutes—as we call them here, who work in hospitals and do community outreach—as soon as possible. But clearly, there’s an art to changing the bags, because of the five first bags that were attached to me by a nurse during the first month or so after my surgery, two eventually sprang leaks* . I’m happy to say that I’ve successfully changed my bag by myself twice already. But Manon says that it’s good to keep coming back, because my stoma hasn’t yet assumed its final, healed shape.
(* the fecal matter that can leak if the bag is not perfectly sealed to the skin is very acidic, and can severely irritate the skin around the stoma. It’s the most serious problem for colostomy patients.)
Manon looks like a kid with her long curls and glasses (that don’t succeed in hiding her pretty face), and her energetic way of speaking, but she’s in her fifties. She’s experienced and seasoned. She has overcome a burnout.
The colostomy bag I was wearing was beige. It’s meant to hide your feces from public view if your bag is exposed by a breeze or whatever, but it means that you can’t see what’s happening inside the bag. Most experienced patients are happy to forego those sights, but I was just four weeks into the “ostomy” life. Still, the day before my appointment with Manon, I noticed something happening, just by feel. My stoma, which should lie flat against my abdomen, had lengthened. I could feel at least 3-4 inches outside my body.
When I arrived at the CLSC the next day, I mentioned this to Manon, but the shape of my stoma seemed different. I lay down on the bed and we got down to bag business. And then she removed the bag and the flange that it’s attached to, and out came this great glob of tissue (my stoma) along with a large hematoma (an even larger blood bubble). We both gasped, I think, and Manon’s entire demeanor changed. She immediately said that I had to be sent to Emergency at the CHUM. Nowhere else would do. The hematoma was “active”, that is, as soon as it was touched, it hemorrhaged.
I took a picture of it while waiting in the CHUM’s emergency room till 11 pm before being sent up to the 12th floor (digestive surgery), but it’s too graphic. Let’s just say that the first image that popped into my mind when I saw it on my belly, red and swollen and wiggly like Jell-O, was of the jellyfish that used to float in on the waves of the beaches of Prince Edward Island when I was a child, and which would have fit in a cereal bowl, just barely.
And so I had to have my second colostomy in a month. They call it a revision, but my surgeon told me she had taken another foot of bowel (she showed me with her hands spread) to make sure there was no repetition of the prolapse. With all of these dramatic diagnoses and emergencies, I didn’t have time to follow-up with the eye surgeon who had done my cornea transplant the previous December. Everything seemed to be going well between January and the end of April, and then pollen season struck with a vengeance here in Hudson, and my right eye was irritated and running incessantly.
I ended up seeing my surgeon on August 30th. Cornea transplants can take up to a year to heal and vision to be restored, but my eye was a disaster, and I was sure that it had rejected its new cornea. Sigh. I found it hard to muster anything but sad resignation. I’ve been so tired.
It turns out that the transplant is okay, but my thin, dry and fragile cornea has sprung a new leak. So that was sliced and patched with glue, and a protective contact lens installed right there at the ophthalmology clinic.
And that’s where I’m at.
My second colostomy surgery doesn’t seem to have solved my prolapse problem. Until my bowels move regularly (they have been traumatized by two surgeries, and my intestinal flora depleted by intravenous antibiotics), I will have to deal with daily prolapses that are caused by intestinal gas and my bowels’ attempts to move poop through the stoma.
It’s uncomfortable, embarrassing and always potentially dangerous because a swollen, prolapsed stoma can become strangulated by the flange that encircles it—which is what brought me to the emergency room mid-July.
And then there’s this business of living with one eye that sees and one eye that burns and is crazy-sensitive to light, and wants to shut all the time, and is being irritated by a contact lens…
It’s more disorienting than being completely blind in an eye, because my good eye can’t ever really adjust, and its vision is impaired, too, by the eye protector I wear on my sick eye and the perforation itself, keeping everything to my right looking like it’s been smeared with Vaseline. I can’t see my right hand if I move it up close to the right side of my face…
The strangest thing is that none of this is cancer; only the side effects of the disease and its treatment.
But I feel as though I have slid down several rungs of wellbeing. I lost a lot of weight through all this and putting it back on is much slower than I expected. And I’ve realized that I can’t get through a day without at least one nap—especially since my right eye wants only to shut and see nothing.
* * * * *
Sometime through all of this, I found myself humming the song Moonshadow, by Cat Stevens. Stevens popped up on my radar a few years ago. I think he’s been rediscovered—an unforeseen side effect of COVID-19. That song, which I’ve always found to be lovely, came back, again and again—an earworm, they call these. So I went to YouTube and watched him performing it.
And it hit me. And I sat there dumbstruck while he sang.
Are you familiar with this song? Have you ever listened closely to its lyrics?
BY CAT STEVENS
Yes, I’m being followed by a moonshadow Moonshadow, moonshadow
Leaping and hopping on a moonshadow Moonshadow, moonshadow
And if I ever lose my hands Lose my plow, lose my land
Oh, if I ever lose my hands Oh, if, I won’t have to work no more
And if I ever lose my eyes If my colours all run dry
Yes, if I ever lose my eyes Oh, if, I won’t have to cry no more
Yes, I’m being followed by a moonshadow Moonshadow, moonshadow
Leaping and hopping on a moonshadow Moonshadow, moonshadow
And if I ever lose my legs I won’t moan, and I won’t beg
Oh, if I ever lose my legs Oh, if, I won’t have to walk no more
And if I ever lose my mouth All my teeth, north and south
Yes, if I ever lose my mouth Oh, if, I won’t have to talk
Did it take long to find me? I ask the faithful light
Oh, did it take long to find me? And, are you gonna stay the night?
I’m being followed by a moonshadow Moonshadow, moonshadow
Leaping and hopping on a moonshadow Moonshadow, moonshadow
What was happening in his life when he wrote it? This lovely, cheerful melody carrying lyrics about loss—physical loss—and finding the grace to accept it.
Perhaps, young as he was when he wrote it, he was thinking of an aging family member or friend, and that inevitable march toward the end of life.
Perhaps the faithful light is hope, or a divine presence, or simple awareness…
I love that he chose to cast his questions against the background of the sky, of the heavens, and of light and shadow.
I think my memory floated this song up into my awareness the way a good person would hold out a hand to someone struggling. I have been followed by a moonshadow for months now, and it seems that my ability to leap and hop isn’t what it was.
I have more lessons to learn. About acceptance. And resilience.
This morning, I checked to see what Facebook had in my Memories cache, and one of the things it selected was this:
“One word Frees us of all the weight and pain of life: That word is love.” ― Sophocles
Art: Guy Denning, “Feedback effects (for the future generations, to have air, sea, ground”, 2020
PAIN, Part One
Just a few months ago, the balance that cancer and I had wrested from each other came to an end. The pain in my upper back that modern medicine and wonderful clinical care had brought under control for weeks returned, unwelcome. Eventually, a tumour was discovered between my first and second thoracic vertebrae, and radiation treatment was prescribed.
These are the stories that I don’t want to tell. They make me the worst kind of messenger. They rattle my mother, upset the people I love and who love me back, dampen the possibility of joy.
What’s worse, they have to be told again and again, over and over to those who want to KNOW what’s happening to me and how I am. And they deserve the truth—which places me in the strange position of trying to find ways to speak hard truth gently.
This is how I came to use voice recordings more and more often. In as little as two minutes or as much as twenty, I can send a recorded message to many people, filled with facts, but softened by my voice which seems to have a soothing effect on the listener.
I need only warn the listener that I first recorded the message for another loved one…
No one has yet held it against me.
* * * *
Edited voice recording sent to my brother-in law, Charles, May 22nd, 2021
“Good morning Charles, I saw your message. It’s a quarter to ten here. I guess you want to know how things are going […]
Uh yeah, it’s not a fun patch. A couple of weeks ago, they found in my latest MRI, after it NOT turning up on a bone scan; NOT turning up on 2 CT-Scans and NOT turning up on a first MRI… they found a tumour between my T1 and T2 vertebrae, which is very high up, just at the base of the neck, and it has filled the epidural space on the left side of the spinal column and is full, full, full, and close to the spinal column and, uh…it hurts like hell, and it’s really awful […] it was a big disappointment, but here’s the interesting thing:
A lot of people remember the blog post that I put up last December which was about having a corneal transplant but having these terrible spasms in my back and being told not to move—and feeling like I was in a Cronenberg movie at that point, especially because they were just putting in the temporary lens that day and I was still so shocked by what was happening to me…
And, well, of course that was the tumour. And it’s been sitting there for well over five months (perhaps much, much longer) and NOTHING made it detectable. None of those tests, the bloodwork, the enzymes that they monitor for tumour activity—the level was 4 [I think], which is like basic humans with not a trace of cancer…
But then, in the […] most recent test I had, it was up to 42, and Dr. Aubin had been saying: “Look, we have to keep digging, there’s…Ça me fatigue [this is bugging me] , and so I went for another MRI a couple of weeks ago, which did all of my spine—I’m not in the least bit claustrophobic, so none of this is hard on me—you just tell me to lie down and be quiet and okay, did I die and go to heaven? [laughing] .
And that’s when they found it, and it’s very serious, and the radio-oncologist, Dr. D, who has my file, at first wanted me to undergo surgery, and then I went upstairs to see the surgeon. And he said something like No, it’s too big a surgery; we’d have to fuse those two vertebrae (I would never be able to turn my head again).
I like that they worry about things like that—there’s something somehow optimistic about that…
Anyway, so he [Dr. D] has been looking into—I think he’s been spending hours trying the find the very best way to do this radiation treatment. I’m only having five treatments, it’s a very small area that doesn’t require having the shit blasted out of it because my spine won’t survive if we do that, so…
It’s all supposed to be happening next Wednesday, Thursday, Friday and the following Monday and Tuesday when I also have the final, routine CT-Scan for my research protocol [or clinical trial] which will now end because there is progression of the disease, so then, you lose that status, but you keep your oncologist, which after three years, I would think that’s pretty close to normal for most patients in a research protocol .
Um…but um…I’ve had it explained to me the excruciating pain I was in last December getting those eye surgeries…
When you’re telling people “I have back spasms, I have terrible spasms” (when I should have been saying I’m in pain), but um…my oncology team knew [I had informed them that fall] and we were able to get that pain under control …and then it was triggered again […]
Also, when they did the very last MRI,–the biggie—my research nurse Chantal said “Your back is full of arthrosis”, which I think is a side effect of the immunotherapy drug, and so there’s some camouflaging in there, and it would be why, with perfect bloodwork, and no other indications, and perfect weight, Dr. Aubin confidently said last December to whoever was in the room with me that day : “Madame Payette est une patiente qui va exceptionnellement bien” (trans: Mrs. Payette is a patient who is doing exceptionally well).
And Simon reminded me that when I was first diagnosed with Stage 4 cancer, Lucie Daoust [my sister-in-law] who is a radiologist, and has been for 35 years, said to Simon: “Your mum’s bloodwork was perfect. Everything was perfect. There was no way to know.”
So, I have a type of cancer that really enjoys just making things difficult to diagnose.
So I’ve been in a lot of pain –real, real serious kinds of pain.
What has been most difficult was last week: for the preparation and positioning for radiation treatment. That work has to be done because you can imagine how pinpoint this is, and how I would never want to have that responsibility or that kind of a job.
Umm…they put me into a kind of neck brace and then they make this mask that they heat up and then they paste it across your face and upper shoulders—effectively forcing your eyes and mouth shut— and then they bolt it down to the sides of your neck support and this is meant to immobilize you totally, for when you go in for the actual treatments, and the second they did that, they triggered –it’s pressure—the area with all the inflammation and …
It was excruciating. And I had to lie there like a dead fish for half an hour, and then I had to do it again a second time, and while that was done, I was having flashbacks of last December, when I was strapped down and in such pain—and at that time the ophthalmological surgeon was talking to the “fellow”, his “fellow”, a resident doctor, and telling him everything he was doing to my eye (it was like being in a horror movie) …uh…but he didn’t know, and…I didn’t know, and what could I say?
Um…so it’s been um…scary and sad, you know, and a lot of crying because, well, this is a whole other picture now, and so I’m hoping that they’ll be able to get as much of it as possible so that pain is reduced for at least a reasonably extended period—which would be really nice—because not sleeping, and not…well, these things are debilitating.
But I otherwise actually feel quite good, which is the thing that’s very weird. Um…so that’s that. You know, morale-wise, it’s been…okay now…we’re in an adjustment now: I have to…um..I have to reconfigure my life and sort of look at what’s ahead, and how I’m going to live and prioritize and accept certain things…
But right now, I feel like I have a ticking time bomb at the back of my head…
When he first called me, Dr. D (my radio-oncologist)—this was Friday a week ago—said: “Well, you’re coming in today”, and I had answered “No, I don’t have an appointment today”, and he said: “But you have to come in today, you have to come in today, I have to see you!”
and then, well…anyway he had to get off the phone because he’s got other patients. So then he called me back in the afternoon […]I remember saying first, “ Well, okay, give me a sense of the urgency of this. “
And he said “ “It’s okay, I have an appointment for you next week. You’ll be coming in for the prep…”
And I said to him, “Well, Doctor […] you seemed very alarmed on the phone in the morning”, and I said, “I just wanted to know why,”, and he said “Well, uh…uh…the truth is if you do something…if something happens to worsen this, you’ll be paralysed.”
And I thought Och! Jeez, Okay, well that gave a very brief and to-the-point explanation of what was going on but then, Charles, when I went to meet him early the following week—this is all in the 3rd basement of the CHUM—I go down and spend a little bit of time with him, and then I go up to see the neurosurgeon on the 13th floor through a dedicated elevator (I never have to come in contact with anybody else),
then I go back down to see him—it was about one o’clock—and by then I was sitting in the waiting room and was just trying to do some yoga breathing, just sitting there with hands on my knees—so not crossing anything, and just doing some breathing, which has been immensely helpful—thank god I had that—and this man, who always seemed…who has the delivery of a Gatling gun, the way he speaks because it’s so direct…(but also hushed),
but I open my eyes and there he was, he was waiting for me to open my eyes—he didn’t want to startle me—he didn’t say a word, he just sort of took his index finger, sort of as if to say…his hand going “follow me”, and walked away towards his office, and I thought:
What human being thinks to be that uh…kind, or gentle?
And that’s been my thing: he’s called me every day at home since then, to see how I’m doing.Now, this is a radio-oncologist! Who is stressed up to his wazoo and who has more patients than he can deal with, I’m sure, and this is my experience of this man.
So…it’s a rather extraordinary life experience, all this, and uh…so we talked, and when he called me yesterday, well, I was able to tell him that I’d had a good 6 hours sleep the previous night and …
I’d been having night sweats, where I woke up and looked like a sheep because my hair was getting longer and it was like sweat curls, the way Penelope used to get as a little baby, and all the sheets of my bed and pajamas…everything was soaked through—cold—not feverish at all, but that has subsided for the last 2 days so I think that’s the Dilaudid,
and so it looks like…
my panic was that when I go in next week for radiation, for the five sessions, as soon as they lock my masked face to the neck support, the pain is going to start shooting and I didn’t think I—I honestly do not think that I can do that again five times, and I think there’s a limit,
and so my only thing was “drug the crap out of me” , drug the crap out of me so that this is not a factor.
I have no claustrophobia issues, I just don’t think I can go through that…
being tied down and in pain is torture, and…that’s the end of that story. And Dr. D agrees and …
anyway, so my team have prescribed double the dose of Dilaudid and I’m on cortisone—something called Decadron, which I think sounds like an end of the world drug or something that’s delivered in rockets, but anyway…
Um…and so that’s that Dear Charles, you’re up-to-date and I’m going to put a blog post up…
I’m very reluctant…when you post something while you’re right in the middle of the shit. But there’s always more to it than the shit, like what I told you about Dr.D…
There’s something…there’s light, in all these experiences…and I have to find all the light before sitting down to write. And so it will all come out, I think quite soon, because I’ll have time to sit and write.
I can’t do a whole lot until they’ve got this thing stabilized. Um…and that’s it. […] “
Photo by Domenico Mastromatteo
* * * *
In the end, the Dilaudid was effective and I was able to receive five radiation treatments between May 25th and June 1st.
But nothing is quite the same anymore. Cancer reached my bones, right under all our noses. And its position, between T1 and T2, means that if something goes very wrong; if, for instance, I’m in a car accident that impacts my neck, paralysis would be from the neck down.
Cancer keeps pulling the fences in and in.
And experiences like the two hellish preparation sessions for radiation allowed me a glimpse of my vulnerability, and of the ways I continue to be made more fragile by cancer treatment.
* * * *
THE RADIATION PREPARATION IN THREE ACTS
1. The first act
The moment when they say
they need to pull my robe down
In this cold space
and I lie there, my
breasts exposed to the
eyes of strangers
women technicians speaking
to each other
such an intimate
such an altered
part of me
small, my nipples
so much darker and fragile
in the cold—and feeling
embarrassment for my body
and knowing that this
will continue to happen.
2. The second act
When after the first scan,
which was so painful, I am
released from the neck brace and
immobilizing face net
and asked to sit up
both technicians catch me,
both of them saying Whoa!
as they steady me.
“On vous perdait”
We were losing you
about to fall
right off the platform.
3. The final act
The second MRI
so quickly after
The third time
I am locked into the
and when it is finally done,
Asking the technician to my left if
She can also help me sit up…
because the thought of even the slightest
twist to my
back would make me pass out
and being so cold…
which is a terrible thing when
you’re already riddled
with muscle contractions
then, sitting in the
changing room in pain
shaking like a leaf
my mind going back to that
first eye surgery
two seasons past
and the sharp
back spasms I was having
put on that gurney and
“Ne bougez pas”
While the surgeon cut into
to remove the torn portion
and replace it with
a temporary lens
Memories formed in
pain, muscle, bone
and the soft flesh
of the body
and a hidden chamber
as old as me where
Image: The head and shoulder mask made specifically for me and designed to keep me completely immobile during radiation therapy. The silhouette is moulded exactly to my body (though I’m not actually wearing it in this photo).
* * * *
My sister Marie, who lives in West Vancouver, has found it hard to deal with the paralysis caused by COVID-19, especially because it has made it impossible for her to fly east, to us.
Recently, her frustration having reached a new level, she posted a nifty FUCK CANCER ! image either in Messenger or elsewhere on Facebook (I tried to hunt it down but failed)—a graphically clear expression of her solidarity with me.
Bless her for making me laugh. Bless her heart, which is at least two sizes too big.
A MICROSCOPIC TRAGEDY
Marie, I don’t feel that way! Interesting right?
Cancer isn’t some invader…cancer doesn’t know it’s the Big C. Cancer is a bunch of messed up cells made in my own body, that are misfits; malformed but still reproducing, damn it, not realizing that they have set themselves on the road to suicide.
If they could know, they would surely cease! I mean…what’s the point of killing Hotel Michelle, their home?
But just like the great amalgam of cells named Michelle is also capable of acting against her self-interest, so are these misfit cells.
A microscopic tragedy playing itself out under my skin
* * * *
PAIN, Part Two
The kindness and professionalism of the radiation technicians who gave me my treatments is extraordinary. The state-of-the art treatment rooms run like clockwork, but I never felt rushed; never felt jostled; always felt that I had their complete attention—that I was their focus.
Still, at day’s end, for the entire time I received radiation, and for the weeks that followed, I was afraid to sleep in any position other than on my back, with my neck vertebrae well supported (Dr. D. had encouraged me to do so), I often lay in the dark imagining my T1 and T2 being pulled at, twisted, or somehow compromised, and waking up one day unable to move. And so I spent every night during treatment lying on my back as still as a statue.
Then, slowly at first, pain arrived. It settled in the area of my sacrum-coccyx. it began as a low throb, and I thought: I’ve caused a pressure point. Maybe I’m getting a small bed sore?
At my next visit with Dr. Aubin, I mentioned it, and it was noted in my file.
Photos: My room at the CHUM (they are all identical and all single occupation)
Almost immediately, the pain grew worse, then worse again. There was no position I could sleep in. It was becoming impossible to sit, anywhere, for more than a few minutes.
It’s hard to imagine what not being able to sit down really means in daily life. Option 1 is standing and hoping some of the pain will subside. Option 2 is lying down on your side for as long as you can—on a sofa, in your bed—and then standing again. It is debilitating. I lost three kilos that week to the ugliest duo I know: pain and insomnia.
The following Monday, I headed to the CHUM for my pre-chemo bloodwork (don’t ask me how I managed to sit in the train for an hour…these are memories I would like to wipe clean). I think that there was the moment when Chantal came to find me on the 14th floor, and glimpsed me lying down across several waiting area seats, legs curled up, using a jacket to prop up my head, and asleep, and that it struck her how seriously wrong things were.
There had been a recent CT-Scan that showed a shadow of some sort in the area where I had all the pain, but neither the surgeon, Dr. Richard, nor Dr. Aubin, nor Dr. D could figure out exactly what they were looking at. Perhaps a small abscess, they thought, which could be monitored. It didn’t seem to be doing much.
Finally, on Thursday, June 10th, an early morning CT-Scan was again scheduled, which pleased me because I imagined myself being able to catch the noon train home…
What happened instead was that the instant my scan became available, my life jumped its tracks. Dr. Aubin, visibly agitated, came to get me and brought me to a gurney in one of the hallways on the 14th floor. It was a crazy-busy day at the CHUM (which has begun re-opening care to all of those who have been languishing on waiting lists since COVID-19 first appeared). Her face was flushed and I could almost see her heart pounding. Within minutes, I was hooked up to an I.V. into which a serious antibiotic was mixed.
I didn’t know it then, but I wouldn’t leave the CHUM for nine days.
The CT-Scan had revealed the presence of a very large abscess at the site of my original colon cancer. It also showed that the abscess had ruptured and was leaking fluid into my abdominal cavity. This is the precursor to peritonitis and septicemia.
I was moved to the 15th floor of Pavilion D, and kept on an I.V. of antibiotics. I ate nothing for 24 hours. By Saturday, I was moved to the 11th floor of Pavilion D, which is reserved for Chirurgie Digestive patients. More antibiotics were warranted before any surgery could be done. The latter was scheduled for Monday, June 14th. I stayed on my antibiotic drip, but was happy to learn that I was allowed a liquid diet (including Jello!). By Sunday evening, I was back to the antibiotic drip only.
I was taken into surgery at 7 am that Monday. It was Dr. Carole Richard, the surgeon I had first seen three years earlier: the person who delivered my original cancer diagnosis; and who looked at me that fated day with large blue eyes and an intensity I had never seen before in a physician, and given me HOPE, telling me about the clinical trial that was just starting, that she thought I might be just right for…
I woke up a few hours later, I suppose, though it felt like only minutes had passed. Dr. Richard confirmed that she had performed a colostomy (which we had discussed beforehand), and that the abscess had been drained. It was, she said, enormous—she had never seen such a big abscess.
The colostomy is permanent. My stay at the CHUM ended on Saturday, June 19th. I returned home more physically fragile than I’ve ever been, my skin literally hanging off my bones—all of the fat and a frightening amount of muscle vanished.
I’m now learning all about the bags, accessories and care of my stoma.
I can sit down without pain.
* * * *
Despite the relentless assaults of pain—and the ominous news it so often carries—my life has been filled with light. What I said to Charles over a month ago hasn’t changed.
Light found its way to me in places, through people, and in the most discreet gestures.
My friendship with Gail, and her willingness to help me find my path to being, and opening myself to Awareness, led to such marvellous Messenger exchanges as this one, which began with Marie Howe’s extraordinary poem:
Do you sometimes want to wake up to the singularity we once were?
so compact nobody needed a bed, or food or money —
nobody hiding in the school bathroom or home alone
pulling open the drawer where the pills are kept.
For every atom belonging to me as good Belongs to you. Remember?
There was no Nature. No them. No tests
to determine if the elephant grieves her calf or if
the coral reef feels pain. Trashed oceans don’t speak English or Farsi or French;
would that we could wake up to what we were — when we were ocean and before that
to when sky was earth, and animal was energy, and rock was liquid and stars were space and space was not
at all — nothing
before we came to believe humans were so important before this awful loneliness.
Can molecules recall it? what once was? before anything happened?
No I, no We, no one. No was No verb no noun only a tiny tiny dot brimming with
is is is is is
All everything home
Reading it in the light of the past months, I immediately wrote to Gail:
Messenger: 31 May 2021
Gail, Is this Awareness?
Her answer was swift:
“Indeed! It is! We are the singularity. The singularity does not disappear when it bursts into the multiplicity, into what the Buddhists call “the ten thousand things”. When Marie Howe asks “do you sometimes want to wake up to the singularity we once were?” she overlooks the fact that we are still the singularity, that there is nothing, NOTHING that is not the singularity. When she sighs “would that we could wake up to what we were” she should know a) that it’s what we were, if you like, but more accurately it’s what we always are, and b) we CAN wake up to what we are! The gift of being human. Rupert puts it this way “ We, awareness, are that with which everything is known. We, awareness, are that within which everything arises. And we, awareness, are that whose activity appears as everything. All that is required is to understand this, to feel this, and to act, and to relate, to the best of our ability in a way that is consistent with this understanding.”
* * * * *
Then, there were moments of grace, such as when a friend of Simon’s, also a John Abbott College employee, asked me if I could perhaps tutor her in her very last French as a Second Language requirement—the only credits she still needed to obtain her DEC in Graphic Design…
Tracie, you wonderful, beautiful human being, you brought so much laughter and joy and satisfaction into my life. I will love you forever.
* * * * *
There were the bouquets I received while hospitalized, from people I consider both friends and family—bouquets so gorgeous that even Dr. Richard, upon entering my room on a follow up visit, stopped, stared and exclaimed: “Quel beau bouquet! Il est…magnifique! Je n’ai jamais vu rien d’aussi beau ! »
It was composed of all of the flowers that I knew to be in bloom in our gardens in Hudson, while a second bouquet, from the same family members, was composed of yellow-gold flowers only. When I saw it, I gasped: “Oh, they’ve sent me the Sun!”
In an unexpected moment of whimsy, one of Dr. Richard’s surgical residents, a Québécoise with clear Asian ancestry in each of her beautiful features, upon entering my room, walked over to the multicoloured bouquet, exclaimed how lovely it was, and then plucked from it a leafy branch saying: “And it even has eucalyptus!”. Then, laying it on my pillow, she said: “Keep it close, it’s aromatic.”
* * * * *
There was the afternoon, toward the end of my hospitalization, when Domenico, my dear CHUM friend, brought me a lemon sorbet during his afternoon break…
It was the most delicious thing I had eaten in days…It was perfect. And it cost him his short break.
I love you, Domenico. Your big heart, your spirit, and the way you look for beauty in all things.
* * * * *
There was the way that my husband Sylvain’s family, though he and I are separated, continued to include me in all of their group messaging, often sending me private links so that I might see all of the babies who were born into the clan this year, and the perfect faces of those grandchildren who are growing up far too fast, despite COVID.
Merci Melissa, Geneviève, Marie-Hélène, Pascale…
* * * * *
Finally, there were Simon, Jeremy and Christian.
After years working intermittently as an actor for the McGill Medical Simulation Centre, Christian has come to know medical, and specifically hospital culture as well as any physician, I think, which is why, in spite of the ban on being accompanied, he was able to obtain the authorization to stay by my side that very first, awful Thursday, watching over me like a hawk. Merci Chantal, merci Dr. Aubin.
And even when he was barred from seeing me once I’d been moved to D Pavilion, he made sure—with Simon’s collaboration on the home front—to send me, on two occasions, bags of supplies. Both he and Simon also included my laptop and two external hard drives filled with movies and TV series I love…
I felt so much less lonely. It was as though my sons were by my side.
And Jeremy, working from home, plied me with videos and photos of Penelope and Graeme…We had some of the sweetest phone conversations…
* * * * *
MONDAY, MAY 24TH 2021
“I awoke at dawn, still dark and shadowy, but the air alive with birdsong, so much of which I still have to identify;
and the shrill, metallic sizzling of squirrels–red I think–and lay there, deciding to stay awake to it all.
I moved my pillows in such a way that even though I was due for my next dose of meds, I felt no pain.
I watched dawn break, saw the sheets of sunlight spread out like a spotlight through the plein jours.
You want to scoop this peace up and hold it to your chest. You want to feel every breath you take in this moment.
Then, as the sun had risen and the animals quieted a bit, I closed my eyes and truly daydreamed.”
ART: Thomas Callendar Campbell Mackie, Southerland Dawn, (1886-1952)
June 24th, 2021
Lying in bed last night, waiting for sleep to come, I started listening to some of the voice recordings I made on my phone the morning of my surgery. They were all made at around 6 am, when I still thought I wouldn’t be wheeled to the operating room till the afternoon. In fact, they came to get me just an hour later.
In one of these, I simply name all of the people in my life who are dear to me, and tell them that I love them—in English and in French. I know there are names missing…but I feel certain that my love reached everyone I carry inside.
But the following recording, made on the 5th day of my hospitalization and fourth day of being physically cut off from everyone I love—in this brief moment, I grasped the light.
TRANSCRIPTION OF VOICE RECORDING 112, July 14th 2021, MADE AN HOUR BEFORE GOING IN TO SURGERY:
“Today is the day of my operation and for the second day in a row, I wake up at an hour that’s basically dawn, except that at home, at dawn, it’s the sounds of the birds that awaken me, but here, there are none of those noises: there’s the sort of strange, sticky, scratchy sound that the intravenous pump makes, and then there’s the ventilation which basically keeps the whole hospital in tiptop hygiene with great air […]
Why I’ve woken up at this time? Well, I guess it’s now programmed into me—I did the same yesterday morning.
Today is the day that I’ll be operated, and that has something to do with it, although I don’t feel nervous at all right now, it’s not about that…
I’ve been sequestered from my whole family, from everything and everyone [since Thursday evening]. I was brought here to Pavilion D on the 15th floor, which I didn’t realize was a patient care floor. So I’ve been in this bed Thursday night, Friday, Saturday, Sunday,.
Today is Monday […] Dr. Richard is a very, very gifted surgeon and I give my life over to her once more and hope that she can do the very best for me, and…that should be my day. I don’t know when they’ll call me; I’m thinking the afternoon, but who knows…
And so that’s it. To everyone I love, if I go quite soon today, and then what comes after…I don’t know, I’m afraid to think…there have been a few disasters along the way in the last seven, eight months and it has changed a lot of things inside me…There is no silly optimism; there isn’t a sense of somehow being magically protected. There is the knowledge that I can take an awful lot of pain, and that pain, no matter how unbearable, never…never…has an impact on how much we love.
…and who we love, and how deeply. No impact whatsoever. Even in the grips of the worst of it, I knew love, I felt loved, and I hoped to keep loving.” [still crying]
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