“The most painful state of being is
remembering the future,
particularly the one you’ll never
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. Donath 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 removed. 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:
by Marie Howe
(after Stephen Hawking)
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]