It’s about the way events in our lives can become connected; even the smallest, which taken individually seem insignificant, strung together in a sequence that not only heightens the meaning of each, but which can make you feel as though life is sending a message directly to you. As though nothing about this string is random. If you think about it, you’ll surely be able to recall this kind of moment. Here’s what I experienced just days ago.
In a book I was reading, I came across the story of a couple who, already the parents of a preschooler, found out that they were expecting twins. Things had been going smoothly until, well before 28 weeks into her second trimester, the mother went into labour and both baby girls were born. One died very soon after in the neonatal ICU unit. Her sister hung on and was saved, though she suffered so much damage in the weeks following her birth that she has never been able to walk or move or speak or do much beyond breathe and take in nutrients and love.
The book mentioned that at the funeral for the lost twin baby, Raymond Carver’s short poem, “Late Fragment”, was read.
I must tell you now that I was already shivering, because while my twin sons will be 37 in May and are beautiful, healthy men, the fact is that one, Jeremy, the “second” twin, could have so easily died in childbirth when his umbilical cord prolapsed as he was beginning his exit from my body. Jeremy, who had to be cut out of me by emergency caesarian. Jeremy, who after 5 minutes, was still not breathing, simply hanging limp, unconscious and blue and…I shudder, because he came so close to death. Jeremy, who spent a week in ICU and yet miraculously came home with his brother Simon 6 days later. Still, for weeks and months and years, he was followed at the pediatric pulmonary clinic for what was thought to be congenital lobar emphysema. Whatever it was, it eventually corrected itself. He is brilliant and perfect. How this is so, I can’t fathom. His fate could so easily have been the same as either of those little premature twins— with an APGAR score of only 1, five long minutes after his delivery.
And because the story of those tiny twin girls unlocked such tender and intense feelings in me, I looked up Raymond Carver’s poem, which goes like this:
And those verses…Those verses…They are everything. They speak directly to me and to the lesson I’m learning every day since my diagnosis. And then I saw that “Late Fragment” is the final poem in Carver’s last published work, A New Path to the Waterfall, a collection that was written while he was dying of cancer. It was enough to cause me to gasp.
During all of this, while overcome by the mixture of unutterable sadness and traumatic memory and astonishingly, joy—a joy that grew out of the absolute resonance of that poem’s message in my life–I’d been messaging back and forth with Christian. I was telling him that our beloved friend/family member Mario, for whom I’ve recently posted an online review of the biography he’s just finished—but which cannot be promoted the way it deserves because we are living in the time of COVID-19—had just then written the most kind, radiant short message of thanks to me.
So there was the tiny lost twin, and also the second, from whom life withheld so much of its richness; and there was my Jeremy, rescued from the grasp of life-altering injury; and there was a brief, staggering poem and its luminous message; and there was and is cancer, ever present; and the consolation of love, lavished upon me at that moment by Mario…all of these tapping one into the other like dominoes…
And I wrote to Christian, right then, amidst this unfurling wave of emotional truth: There are moments that simply are not coincidence.
I woke up at 5 o’clock this morning, feeling the effects of the 5 FU (Fluorouracil) that I won’t be getting tomorrow during chemotherapy because it has surprised me and my medical team, with side effects that harken back to the early days, when I was at full concentration, which, over time, has been lowered incrementally by 6 % (at least I think that number is correct).
All this really means is that my body has been struggling. A severe recurrence of swelling and burning in my hands that are now difficult to close into a fist or do much else with painlessly, and their almost mummified skin which, when it splits open, turns the newly exposed patches into areas especially sensitive to the alcohol-based hand soaps I had to use 20 times yesterday at the CHUM. And, something akin to being desiccated from the inside: burning corneas and sinuses that ache and fill with mucus that seems to petrify on contact with air; the interior of my mouth swollen and heat sensitive and unable to produce much useful saliva.
When I awoke, all of this hit me, all of the discomfort at the same time so, rather than get up and quite likely wake Simon up if I moved around, I stayed put and entered a cycle of trying to fall asleep, almost succeeding, being awoken by snorts that I was responsible for with my saharan nasal passages (so undignified), and starting over again…
(My complaints are now officially finished)
At 9 am, just minutes ago, my phone pinged (with an interesting COVID-19 related article link sent by Simon), and I looked at the time, and here I am. I dislike feeling that a few extra hours of life, bright and early life, escaped me. I am so happy to greet each morning.
But I didn’t awaken to a quiet house because Simon is at home, teaching his college-level biology students online, holding office hours online, orchestrating “labs” online. Minutes ago, he was online with a student, and though I couldn’t hear everything—the door was closed and their voices slightly muffled—I could hear the younger man’s voice, and his questions, and I could make out bits of Simon’s data-supported answers. Simon was clarifying some of the confusion surrounding our coronavirus infection rates in Quebec, and why our numbers are what they are. They bantered back and forth and I could hear understanding in the student’s voice, the deliverance of knowing more, of making sense of the mess out there…
He seemed a lovely young man. His teacher, my son, is only 36. They are in it together, aren’t they? Their individual fates will play themselves out in much the same time-space.
Sitting here, it also occurs to me how different the two obvious threats to my own life are. Covid-19, a virus, is an INVADER. It’s out there, in other bodies, in the droplets that the latter produce when they sneeze and laugh and spit. It covers surfaces for a brief while before it dies. It attacks other people’s bodies and, if given a chance, will do the same thing to mine, because it is ALIVE and seeks to remain that way, and needs “living vessels” to do that. It can also mutate.
And this, from a human standpoint, makes it merciless. It’s alien and aggressive and our bodies single it out quickly and attack it ferociously, and we humans feel terrible in this predicament of having become a furious battleground. But it also offers, in most cases, the very strong likelihood of our survival. Death rates from COVID-19 are between one and ten percent, I think. It depends more on where it emerges and how prepared humans are to treat it. So we hate it for the fear it causes us, and the terrible loss of life that any percentage ALWAYS represents, as we wait for our bodies, all of them, everywhere, to win this fight to the death, leaving behind a life-altering perspective on the precarity of human civilization; bringing about, I HOPE, a sea-change in human attitudes toward each other and the life that surrounds us. What matters; what was only ever superficial and ephemeral; what can be taken away by a microscopic pathogen doing what it is programmed to do, nothing personal.
And then there is cancer, my cancer, which, in contrast with COVID-19, is NOT an invader, is not alien. Whose purpose is NOT to harm me. All of our bodies contain cells that can potentially change just enough to make us sick as they continue to reproduce and make more dysfunctional cells, as though they are the one and only cells. Mine were able to reproduce and cling to each other and sustain each other for a long while before I felt ANY ill effects whatsoever. YEARS, in fact. My body supplied them with everything they needed, not sensing that they would, in time, kill me. My cancer cells have no “reason” to kill me: they just could, and likely will. Sooner than I would wish.
And yet, when humans see a person whose complexion is sallow, often yellowish, whose hair is thin or almost gone, whose weight has dropped visibly and whose clothing just hangs on their shrunken body or who seems to be in constant pain, we feel as great a fear (perhaps even greater) of them and their sickness as we would of a person with flushed cheeks and a cough (though probably not these days). And we feel revulsion. We would prefer to occupy a minimum safe distance. But we don’t become hysterical, run out to hoard toilet paper and medical masks, and buy up so much more than what we need and what is our fair share.
We are each other’s keepers. Have we begun to internalize this deeply yet?
My long commute to the CHUM and my time spent there allows me to observe the emptiness of our city under lockdown. What it means to be living without life around us. Large cities spell this out in the most awful way. Montreal has become an architectural ghost town. The buildings still reach up to the sky, still posture and preen for our attention. But they mean nothing, until you remember that at least some of them, apartment and condo complexes, are actually human hives—swarming with social beings trapped there for a while yet.
When I reach home in Hudson, its birdsong and plant life—it is spring after all and nature is bursting with reproductive energy— remind me instantly that life is everything. Not objects, not buildings, not a pantry or garage overstocked to the point of bursting with hygiene products, flour and sanitizers.
Life. People. We miss each other! We miss being touched by each other. We miss the astonishing, reassuring proximity to each other. And we’re learning to live in a decelerated, hushed world.
The appearance of a person at the end of the road with cancer very much resembles the appearance of things that humans have done to each other. That is, the way we found humans in prisoner of war camps and concentration camps, or exhausted and hollowed-out refugees, eyes wide in the dark, piled into boats like so much trash: emaciated, starved bodies that can’t take any more suffering. And maybe that’s part of what terrifies us about cancer: it’s also a reminder of what we’re capable of doing to each other…
But when we enter stores and empty out the shelves, piling our carts full of “stuff”, to the detriment of everyone else around us, not caring; shoving, pushing, losing our shit in parking lots and aisles, then I think we’ve become cancer cells too, and it’s a horrible thing to witness: each person-cell seeking only its own survival, oblivious of the needs of the community—the social body. How ugly is this breakdown of human solidarity and this intensely focused desire to self-protect!
At the end of their lives, people with very advanced cancers, they just fall…they fall from life, the way the leaves on the trees do in late autumn and early winter.
I’ve been away from THIS IS THE MOMENT for a while. This past month, I’ve been thinking that if ever I succeed in shaping these pieces into a book, that it will have a long title, It will have to be named:
THIS IS THE MOMENT
Cancer, Chemo and Covid-19:
Two improbable years in a clinical trial
It’s certainly the alliteration that rocked my world. I wonder if the best portrayal of the person I was when I was diagnosed with stage 4 cancer in July 2018, is of a woman with training wheels: not yet competent and ready for the ride ahead?
But 2020, my gosh, what a year so far! Four months in, and I don’t dare look around the corner—which I think is a reasonable response.
* * *
In February 2020, Covid-19 wasn’t yet a familiar word. Instead, I was hearing warnings and reports about a new coronavirus outbreak in China…so many miles away…But Simon, versed in epidemiology, already understood that something was up, and was reading the available scientific literature about it.
By the first week of March, the coronavirus had begun to loom over everyone and everything, as we were starting to grasp the fact that it posed a very serious, yet still mysterious threat. It was Spring Break in Quebec. Many Québécois were gone for the week: to ski locally, to see the sights of New York City, to the beaches of sunny Florida, to Europe and on cruises. They had, in fact, for the most part, picked the worst possible destinations. The worst infection zones. My cancer keeps me welded in place, so instead, we had friends and family over for dinners, my grandchildren for a full day of jewelry-making and baking and fun.
The news grew worse. The expression “social distancing” was read and heard more and more. My inner alarms had activated. I knew I had to go into Montreal twice the following week, to the CHUM, for my usual chemotherapy but also the standard pre-chemo blood tests etc. Two consecutive days: March 9th and 10th, and that I would have to take the train and the metro and hang around at the hospital for hours, both days.
It was a torment. The word pandemic had emerged by then.
And my innards began resisting. I felt chronically upset and anxious. More so than I’d felt since I was first diagnosed. I didn’t want to go into the city and take all of those risks, but neither did I want to miss life-sustaining treatment.
I went into the CHUM that Tuesday reluctant, resistant, frightened. During the preceding days, I exchanged several emails with my research nurse, hoping she’d say something magical that would keep me safe.
The week before Spring Break, the strangest thing had happened. My oncologist, Dr. Aubin, who is always gracious and kind, but who also weighs every word carefully, had greeted me in her office with the warmest smile. Bonjour Mme Payette, she’d said, and continued to smile. And after the usual questions about any side effects I might have, she’d simply said (in French): “I’m so happy. You’re doing so well. Really! Bravo!” , and she’d looked at the spreadsheet with all of the information gleaned from my blood work that filled the large screen of her computer, and had said: ”I’m really very happy for you. This is the Nivolumab we see at work [the immunotherapy drug|. And honestly, you can’t really be considered immune-suppressed right now.”
This never happens. This kind of unguarded, spontaneous revelation? Never. Reassurance that things are going in the right direction? Yes. That my tumours have shrunk almost 60% since I started? Yes. But this smile that revealed that, as an oncologist, this was truly gratifying progress (stage 4 cancer is at best a chronic disease)? Never.
For a few days, I got to live in an almost carefree state. Or at least, in a mind space that I could sprinkle optimism and a newfound joy into.
Ten days later, the human world seemed to be imploding. And still does. It’s a world smothered by Covid-19, the name of the virus we will all have been branded with, whether infected or not.
Daily catastrophic news and statistics poured in, and not so long ago, I found myself thinking: I don’t want to NOT die of cancer!
* * *
When I arrived at the train station early in the morning on Tuesday, March 9th, I was so stressed that I felt a bit sick to my stomach. There were two cars in the parking lot which usually accommodates more than a hundred, maybe even hundreds: mine and a blue one, side by side. It was 7:09 and I thought for sure that I wouldn’t make it up to the actual boarding area on time for the 7:10 train. But when I climbed the concrete stairs, the train was just idling there. Its doors open. No one in sight. Not a soul. A ghost train.
Unsure what was going on, I boarded, and saw a young man in the next car and felt immediate relief. And then the doors shut. Almost soundless. And the train started to move, with stealth. I was completely alone in my section. There were eleven stations left before I was meant to get off. I saw two or three people, at the most, get on at any of these stations. No one ever joined me in the section I had chosen. This should have been the most packed train of the morning. Standing room only. Rush hour. Instead, it felt dead. Post-apocalyptic. It took just a few minutes for my sense of relief at not being at risk of infection turn to a terrible, lonely feeling. I got a lump in my throat. I felt the urge to cry. I felt anguished. The part of my brain that Malcolm Gladwell wrote about in his book, BLINK, was signaling unease, unease, unease, something’s off, something’s wrong…
When I reached Vendôme station to take the metro, it was much the same.
At the underground entrance of the CHUM, again, near desolation.
It was as though the physical world had transformed itself into the way cancer made me feel during those first months and seasons of treatment.
The cues that guide us every day had disappeared.
Since then, I’ve grown more accustomed to this strange, empty world. I head into chemo alone now. Only the very weak, those suffering the most, are allowed companionship and that’s the way it should be. I miss Louise, my precious friend, who accompanied me so regularly, then drove me all the way home after chemo, and stayed for supper. But I’m lucky, my son Jeremy who is now working from home, has come all the way to the CHUM to pick me up and bring me home several times. I miss Christian, who often popped in on a day he wasn’t working, to keep me company.
Simon is here, teaching online. Keeping his energy up. Keeping me informed. Making delicious meals and, I’m sure, feeling starved of the physical company of the colleagues, friends and family he so happily mingles with and opens this home’s doors to at every opportunity.
In truth, my life has changed less than most people’s. I’ve been in training for the past 19 months, learning to stay put, monitor my health, avoid germs and stay out of harm’s way.
* * *
Last Monday, I had to return to the CHUM for my scheduled CT-Scan (every eight weeks, like clockwork). On this day, I waited a long time for my turn: several hours, sitting in a hospital gown, a catheter stuck in my arm, on a stiff plastic chair in a cool hallway staring at a wall. When I was finally called, I did as asked, and lay down on the sliding “bed” that is part of the scanner. And then the phone rang, and the technician told me without a shred of gentleness in her voice to get up, that someone suspected of having coronavirus was on the way, and I would have to go back to the waiting area.
And so I got up off the machine, and looked at this woman, and wondered why they couldn’t just do the scan which barely takes 5 minutes. And then I think I said (in French): Well, I’m not sure that after 19 months of cancer treatment, coronavirus is very good for me either…”
It wasn’t my finest moment. I was imagining the virus lingering in the room. It’s what fear does. And being cut off from fellow humans. And getting worn down.
I’ve noticed how, in the metro, the train, and all the enclosed spaces where we’re asked to practice “social distancing”, we’ve stopped making eye contact. We’ve reduced each other to mobile, possible threats to our wellbeing.
That incoming patient on the way to be scanned…
I don’t know who they were: man, woman, young, old. I don’t know if every intake of air into their lungs was agonizing. I don’t know if they were accompanied. But I’m sure they were scared.
I’m also sure that the CT-Scan technician has seen many such patients, and that the area she works in had to be scoured and decontaminated for the umpteenth time that day, that week, that month…
Her tone had changed when I was eventually called back in. Some of the stress had left it.
I will receive my scan results tomorrow. I want to say “as usual”, but those words ring hollow.