RELUCTANT, RESISTANT, FRIGHTENED

Kilpack, Sarah Louisa; Salvaging the Wreck; Guernsey Museums and Galleries; http://www.artuk.org/artworks/salvaging-the-wreck-136547

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.”

Sedgley, Peter; Corona; Arts Council Collection; http://www.artuk.org/artworks/corona-64096

 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!

* * *

The empty commuter train

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.

The empty commuter 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.

The empty commuter train

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.

The desolate parking lot at Ste-Anne-de-Bellevue station

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.

Waiting area in Cancérologie at the CHUM, .

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.

Paul, Celia; Study: My Mother and the Cross; Lakeland Arts Trust; http://www.artuk.org/artworks/study-my-mother-and-the-cross-145440

 

 

 

 

 

FOR THE SAKE OF SURVIVAL

Part of the THIS IS THE MOMENT series

May 1st, 2019

I suppose that today, of all days, it’s appropriate for me to scream May Day! May Day!

It wouldn’t help my situation, or make any difference though, would it?

I started chemo in late August 2018, which means that I’ve just entered month number 9 of chemotherapy (these days, “treatment” feels too much like a euphemism).

Yesterday, I went to have my 4th CT-Scan done at the CHUM (including the original diagnostic scan). Since I began chemo, I’ve had a CT-Scan every eight weeks—a requirement of this clinical trial. By that count, I’ve passed 32 weeks of being poisoned for the sake of survival.

Yesterday started off just after lunchtime in such a weird and inauspicious way. With my scan scheduled for 3 pm, I planned to go first to the hospital’s open eating area on the first floor, where I’ve spent hours this year, waiting for whatever was next. It’s a vast, windowed, very bright space with dozens of tables where people sit—including many hospital staff—to eat and unwind.

This time, however, before I had even reached the escalator landing, I could see that there was something crowding everyone (they all seemed bunched up) and creating shadow. When I reached the top at last, I was met by an 8-foot high, 25-foot-long puffy pink tube, with lumps and bumps here and there on its surface. This was the monstrosity that was responsible for making seating far scarcer than it should be. When I walked further into the hall and found a spot to sit (I shared a table with a nurse who was on her lunch break), I realized that the big pink tube was a shadowy tunnel that people were visiting. But what I felt when I read the signage in front of it…

It was a giant section of intestine, made to be strolled through. It was there to educate hospital staff and visitors about colorectal cancer.

Fuck. Really? (That IS what I thought) I mean…really? It was hard to see it as humorous. It felt more…ominous. As mental preparations for a colorectal cancer CT-Scan go, this was truly awful. And definitely unwelcome. And I didn’t visit it! There seemed no need to go see tumours and polyps up close and Godzilla-size.

Thrown off somewhat, I ate quickly and then went up to the 14th floor for a blood test that’s now required by Bristol- Myers Squibb before each scan: a simple embryonic enzyme test, which, I think, measures tumoural activity (my results have so far been good, dropping steadily, which is what the oncologists want to see).

My univein !

The only good, fat surface vein I have for blood tests is on my left arm. Just the one. There simply isn’t anything visible to work with near the surface of my right arm. This, as time goes by, will become a problem. My poor univein is beginning to harden, though up to now, the CHUM’s phlebotomists (drawing blood is an art!) say that it still has bounce (they say: Elle est encore rebondissante!”). But, because I knew that a catheter would be inserted into my champion vein for the Ct-Scan, I asked the nurse if he could perhaps use a vein on the surface of my right arm, one that Chantal, my research nurse and guardian angel, told me was big enough. He opted instead for a vein on my right hand. With his magic hands and a tiny needle, he managed to get what he needed. It was only when I entered the Tomodensitométrie area (in English, that translates as “computed tomography” or CT), that I felt pain and throbbing in my right hand. When the nurse installing the catheter in my left arm (in my plucky univein) saw my sore hand, she said: “Il vous a rupturé ça pas à peu près!” which translates to something like: “Whoa! He blew that one up good!”

There I was, back in an area I’ve written about previously, wearing a hospital gown, and not much else except my shoes and socks, in the company of close to a dozen others adults who looked about as attractive and gloomy as me.

But this, of course, is where it all gets so serious. And it’s when the culture clash between the worlds of medical professionals and the people they call patients is so clear to me. It must be hard to lead with your heart when the patients who stream through your department all look alike: gowned and pale, their education, work life and personal histories unrevealed. They, the medical staff, are so comfortable in their working environment and we, the patients, are anxious, and diminished, and longing to get out and go home. And the technicians who operate the super-high-tech diagnostic equipment are generally kind and polite and concerned that we fare well while inside the giant, noisy scanners and imaging machines, and tolerate the claustrophobia and the chemicals injected into us, while we lie there terrified of what these machines will tell the radiologist who will decode their data…

Yesterday, I sat waiting, in my gown, between a fifty-something man and an older, heavier woman, who gave off signals of wanting to be left alone inside her bubble. The man seemed content to sit in silence too. It makes so much sense: aside from each person’s disease or reason for being there, what is there to talk about? Apprehension was the elephant in the room and it was visible to each of us.

And then, the first woman was taken to her test, and another woman, younger (perhaps in her late forties), sat down beside me. We didn’t get to speak for long, because I was soon called, but in the brief time we had, I mentioned to her that I could see that this wasn’t her first scan, because she was sporting the same regrowth of grey-white hair that I was— though hers was shorter than mine. I just wanted her to know that I saw her as a sister-patient, that she had all my empathy.

Then she said: “And I’m going to lose it all again. My treatment isn’t working. It isn’t working And I have to start chemo again.”

It was such a heavy, meaningful, ominous thing to say, and as she spoke, there was still the trace of the smile that her face was meant to wear and that might otherwise come so easily to her…

My name had been called. What could I say? All I could manage was (in French): “We’ll see each other again here, with our beautiful pink complexions…” and then I was led off to the CT-Scan area.

What will her scan show? What will mine?

I should have taken her in my arms and just held her.

Carson, Rosemary; Patients Waiting to See the Doctor, with Figures Representing Their Fears; Wellcome Library; http://www.artuk.org/artworks/patients-waiting-to-see-the-doctor-with-figures-representing-their-fears-125800

 

 

 

 

 

AFTER THE LULL

Part of the THIS IS THE MOMENT series

The CHUM, yesterday

January 14th, 2019

I’m back at the CHUM today, after an almost month long hiatus from chemo. It was an unplanned winter break. It felt a little like playing hooky, like an unexpected escape, like getting away with something.

But clinical trials don’t let you off the hook for very long, and today, it’s back to a full dose of reality: pre-chemo blood tests, a visit with Dr. Aubin, the chief oncologist involved in this trial (a young, petite, brilliant woman who has been wonderful with me), and SURPRISE !, my second CT Scan (the study requires a scan every 8 weeks).

I didn’t know this was on today’s calendar. This serious return to reality is unwelcome.

I should feel optimistic; everything so far has indicated that my body’s response to my treatments is positive, but I would have liked to coast on that feeling a while longer. There’s a whisper inside my head cautioning me to prepare for the possibility of disappointment.

What would disappoint me? I have to think about that.

(I have lots of time to do so: 4 hours in fact, because it’s 10 am, I’m done with Dr. Aubin and my scan is scheduled at 2 pm)

—If my tumours have recovered and even grown, I will…I will…

I can’t complete that thought.

It belongs in the Do-not-go-there-until-you-have-to category. The place of the unwritten future. May it remain banished there.

The CHUM, yesterday

—If my tumours have shrunk a lot less than on the first scan?

Yes, this would definitely disappoint me, but it seems quite plausible, doesn’t it? My body has been adapting to the poisonous drugs invading it; surely the tumours are pursuing their own survival strategies?

When you have cancer, things get real very quickly.

The holiday is over.

But you know what? Almost 5 months into chemo, I’m not frightened the way I was before it started. I live more comfortably within my life’s new landscape. Forward momentum means very little to me now.

What’s just bubbled up from my memory are images—like footage—of all of those summers of my childhood, when we would pile into the car with a trunk full of suitcases, and a cooler full of food, and off we’d go, on vacation, usually eastward, spending hours and days in the car, my sisters and I seated in the back seat, sometimes with our grandmother; my parents in the front with one of their daughters wedged between them if grand-maman was aboard, watching cars whiz past us, in both directions of the Trans-Canada highway, and the scenery along with them. Whoosh! Whoosh!

That’s how my life has felt, for the last decade at least: me speeding through the days, and rarely in the driver’s seat, constantly monitoring the passage of time and feeling it running out…

Cancer brings the stillness of a dropped anchor.

January 15th

What struck me yesterday in Radiology was how sick people were. So many were rolled into the CT-Scan and MRI area in gurneys, that I lost count. One older man could barely stand, but still tried to avoid using the wheelchair provided for him to move about. He sat very still while having a catheter installed in his arm. He couldn’t speak, just the faintest whisper was possible for him, because there was some wound or incision in his neck. But every single one of his breaths was audible as he shuffled to the room he was called to.

I remember my first scans well. On that day last July, I was to have the first of my two diagnostic scans: the MRI and the CT-Scan—those that ultimately revealed the advanced stage of my cancer. I was still new to the stages of malignancy, to the CHUM, and to the hijacking of my life by a disease. On that summer day, waiting seated along that same wall where I found myself again just yesterday, with a good half-dozen other patients, I felt and looked like the newbie. I felt younger, and vibrant. I could still smile and act relaxed. But right next to me was a woman at the other end of the line. She made eye contact with me immediately and I could see how much she wanted to talk. She may have been only 5 or 6 years older than me but she was ancient by the standards of health. Her pale blue hospital robe—just like the ones the rest of us were wearing—accentuated her pallor and that unmistakable yellow-beige “chemo” complexion that’s so common to patients who’ve been battling cancer for a long time. Her hair was short and patchy and her eye lashes and brows were virtually gone. But she turned to me and smiled an exhausted smile, and though I’ve forgotten her exact words, I remember that she was three years into her battle to survive breast cancer that had travelled to her bones and was now in her brain. I remember that she touched the port-a-cath, that visible square bump under the skin of her upper-right chest—which is just like the one I now have implanted in me—and said: “This is what you want, it’s fantastic.” She was right. It is.

I’ve thought of her often. I wonder whether she’s still fighting to survive, five months later, or whether her body has reached the point of exhaustion. I think about her will to live, about her gentle smile, and about the distance between us and how much of it is delusion.  How many patients like her are there? Where does their strength and determination come from? Their willingness to be stripped of almost everything but their pulse?

Hawke, Marjorie; Probe; Royal Free Hospital; http://www.artuk.org/artworks/probe-123837

You enter the area, you walk into a small room and lock the door, because you have to get undressed. In an impressive, succinct combination of images, words, and alphabetical order, you follow the guidelines written out for you on a poster hanging on the wall.  Instructions A, E  and F pertained to my situation. When you leave that change room, you’ve left behind your distinctiveness, your spark, your colour, and most of your joy, because you’ve become indistinguishable from everyone else. The hierarchy of illnesses is almost invisible. Everyone is just a patient.

No one could stand this for very long. We all need the recognition and validation of others. We need to experience agency in our lives. We require the dignity that comes with being able to speak for ourselves, to be treated as individual, precious humans who also express themselves by means of their clothing, their demeanor and their social interaction. Sometimes, just the look in our eyes is enough. Some of us are positively heroic in our endurance of pain and our astonishing resolve. Some of us are sad, some angry, some terrified and some, all of the above.

Illness and injury reveal us to ourselves. And to our loved ones, I think.

Yesterday afternoon, I couldn’t wait for my CT Scan to be done. I lay there, on the mobile slab inside the big white ring that vibrates and hums and lights up, with my arms above my head and the catheter placed uncomfortably right where my left arm bends, and held and released my breath as prompted by a disembodied voice, and felt the hot, fluttery rush of iodine as it entered my bloodstream and quickly made it all the way to my bladder. And then it was over. My catheter was removed, I gathered my things, re-entered the change room and recreated the person I am by dressing and leaving Radiology, walking down the long, labyrinthine hallways of the CHUM, till I reached Champ-de-Mars metro station, blending in with everyone. Similar, but Me nonetheless—and free.

Croker, Michael; Milton Keynes Hospital at the Millennium; Milton Keynes Hospital NHS Foundation Trust (managed by MK Arts for Health); http://www.artuk.org/artworks/milton-keynes-hospital-at-the-millennium-27098