Breathe. Accept.

Part of the THIS IS THE MOMENT series.

January 22nd, 2021


I’m back!

I had to look back through THIS IS THE MOMENT to see how long I’ve been away, and was shocked to see that I last wrote to you in November.

I’m so sorry about that.

Do you believe in jinxes? Yes, I’m serious. Do you believe that words uttered can have the effect of toppling one’s wild and precious life?

In my case, it’s about a happy, uplifting appointment at the CHUM I had in early December with Dr. Aubin and a resident who was attending her, and also with my beloved nurse, Chantal.

During 2020, I received chemotherapy every two weeks from January to August, with no breaks at all—a gruelling experience, but one I thought was worth it because I knew that late August would mark the end of the two-year clinical trial I had signed up for. It meant that I would no longer be receiving Nivolumab.

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.”).

Dr. Aubin had even convinced the sponsor of my clinical trial to preserve my status as a research patient, because my data was valuable as long as I stayed the course and received Folfox.

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.

ART: Ellen Levinson, Orange Sunburst Forest Abstract

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.

Watts, George Frederic; Hope; Tate; http://www.artuk.org/artworks/hope-117695

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!”).

Um…uh…oh…bbbb…but….

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…

Swynnerton, Annie Louisa; The Sense of Sight; Walker Art Gallery; http://www.artuk.org/artworks/the-sense-of-sight-97597

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.”

GULP.

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.

Breathe.

Accept.

Breathe.

Accept.

Stoner, Tim; Breath; Government Art Collection; http://www.artuk.org/artworks/breath-29343

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.

And LOVE.

Of course.

Hashem, Satta; Sight and Insight 1; Leicester City Council (Adult Skills and Learning); http://www.artuk.org/artworks/sight-and-insight-1-95197

LAYER BY LAYER, I SURRENDER

Part of the THIS IS THE MOMENT SERIES 

RECENT OBSERVATIONS FROM CHEMO BASE CAMP, PART 3

October 2nd, 2018

Last week, one of the oncology psychologists on staff at the CHUM called me, wondering if I’d be interested in meeting her to talk about my experiences so far. While I thought of saying: No, no, that’s not necessary, I’m doing pretty well, blah-blah-blah, another part of me remembered the sadness I’d recently struggled with. How quick my reflex was to dismiss her invitation because I didn’t want to go back to the CHUM on my off-week (that is, my chemo-free week), and perhaps because dismissing her was also a way of making some of my medicalized life just go away…

Waterhouse, John William; The Lady of Shalott; Tate; http://www.artuk.org/artworks/the-lady-of-shalott-117690

And then I also remembered that I had booked an appointment for Friday at 2pm with Les Jumelles, identical twins who have been in business 35 years, helping people (mostly women) suffering with hair loss, and whose salon is just a 15-minute metro ride from the CHUM. And so, I said yes to the psychologist, Véronique, and booked us for noon.

Véronique is actually at the end of her training, and her PhD supervisor, also a woman, sat discretely against the wall, tucked away in a corner, and simply listened and took notes for the entire 80 minutes (we should have gone to 90 but Les Jumelles were also expecting me).

It was a strange experience at first. I’ve consulted before, for other reasons, and am convinced of the immense value of the therapeutic process, but to be sitting in a sterile room on a stiff chair facing two psychologists, at a time when I feel as though I’m falling from a great height, with no sense of where the bottom is…Well, where do you start?

Everything about what’s happening to me is contextual. My separation from my husband; my new, multigenerational home; my diagnosis and treatment. These are all so intertwined. There have been so many simultaneous changes. Attempting to convey any of this in 80 minutes…

In the end, what I wanted to express to Véronique (or else why bother consulting her?) was my distress, which is always here, inside me, woven between my hope, my daily life which is so full of meaning and so suffused with love, and woven also into my fears about the possible destruction of my life and of me, and the suffering that attaches itself to this, which I cannot help but observe, distraught, as it seeps into the lives of my loved ones. I want to get through this experience of cancer and chemo, get right through to whatever outcome awaits me, but I want to get there without causing pain to the people I love. This is impossible because it isn’t how love works. This was what I left Véronique with last Friday. She said that she’ll come and see me as often as possible while I’m in chemo, which may not sound ideal, but which is a very sensitive decision on her part, leaving me as much time away from the CHUM as possible.

Next, I had to set off to the wig shop. Just like my meeting with Véronique, heading off to the shop in a part of the city I rarely even drive through was something I had to do alone. I surprised myself by doing this. It was a secret that I had largely kept from myself: that I could arrive at this point.

My new wig, looking a little creepy on its “stand”

From what I had read (spurred on by wishful thinking), people treated for colorectal cancer rarely lost their hair. It wasn’t one of THOSE cancers. Their hair might thin, but they usually fared quite well. And then came the chemo, and by week three, all I had to do was pass a large toothed comb through my hair to collect handfuls of it that had detached right at the follicle. There were other similar torments: washing my hair in the shower and collecting the strands of hair, like thick dark ribbons, caught between my fingers and clogging the drain. I had my hair cut much shorter, hoping to save it, but it just made it easier to spot the dozens and dozens of strands clinging to my clothes and collecting in the corners of my bedroom. And then I realized that my hair was so thin that you could see my scalp easily, because my part was widening every day…

My thick, wavy hair, that I had just grown longer after years of wearing it short, had become the drip of the loss that is a daily reality when you’re in chemo. And I couldn’t stand it anymore. Couldn’t stand the feeling of decay that it evoked in me. So, I decided that I would do what I thought I would never do: I walked into Les Jumelles, feeling alone and not very tough, and I tried on wig after wig—most of which I thought made me look appalling—until I saw one that seemed, um, human, and that I thought maybe I could wear.

Palmer, Jean; Head; Manchester Art Gallery; http://www.artuk.org/artworks/head-205760

A small cap was placed over my real hair, and the wig was placed over that, and there I was: straight-haired, with a long fringe that cut across my face. It was impossible for me to speak above a whisper, or to smile. Something was happening in that moment that felt unreal. Cinematic. Taking this step was for me, in important ways, a final retreat, or, looked at from the other side, a determined decision to walk toward all of what chemo means.

The women in the shop thought I might return on another day and have them shave my head and do some final adjusting. They were surprised when I said that I wanted my head shaved right away, and the wig styled and trimmed (with a shorter fringe at the front please!).

And then it was done, and I stepped out onto the sidewalk feeling like some false, floating thing was on my head, and that everyone would stop and stare (and maybe screech). No one batted an eyelash. I had already ordered beanies and caps that I would be able to wear when I wanted out from under the wig, and I wear them a lot at home. But out in the world, the wig, while still an alien thing, is also a valuable accessory because it allows me to walk around without a giant C, for chemo, stamped onto my forehead.

Today, the house is empty, and so it’s my time to write. I didn’t dress up, or put any makeup on, and I just covered my head with a dark blue beanie (no wig) and sat in from of my laptop. Within minutes, the doorbell rang, but I didn’t answer, because I didn’t want to be seen like this. The delivery man left a package by the door. It took just seconds for me to see that he had left the wrong package. Five minutes later, the doorbell rang again, and I knew I had to answer, and make the swap. And face this man.

This morning, after the deliveries.

Then, 15 minutes later at the most, the doorbell rang again (!!), and this fellow, whom I could see through the bevelled glass, seemed pretty insistent, because he rang another time, and just hung out in front of the door. Oh, man. Well, I answered the door. He was a lovely fellow coming to take measurements of the floors because we’re having work done on them. I had been expecting him at 7 pm.

Something is happening to me as I live with cancer and chemo. I’m being made to let go of more than I can count. And each time, I survive the loss. And each time, I am given something I didn’t have. Insight, clarity…I can’t say yet.

Layer by layer, I surrender.

 

 

 

RECENT OBSERVATIONS FROM CHEMO BASECAMP: part 1

Base Camp, Mount Everest

Part of the “This is the Moment” series

September 3rd, 2018

  1. It’s quite possible that chemotherapy requires the stamina and fortitude of an expedition to the summit of Everest

That’s how it strikes me. Chemotherapy is a campaign, a mission whose objective is a cure, or healing, or the prolongation of one’s life, or one last straw of hope held tight. And sometimes, it’s a refusal to acknowledge the end. I think that once it has begun, and for the duration, you leave what you knew to be your life, and set yourself up at the foot of that mountain that you must climb, which, like all those books and novels I’ve read about mountaineering, becomes base camp: the place where all of the “teams”— in this case, medical, psychological and scientific, as well as hovering, vigilant, mobilized friends and family—that have entered your life.

On Wednesday, August 22nd, I reached base camp: my chemotherapy treatments finally began. Chemo is that thing that I hoped I would never have to experience (at the beginning of my journey at the CHUM, this still seemed possible: Dr. Richard spoke only of radiation and surgery). Alas, it soon became the only way forward for me.

I know that my mum and other loved ones who don’t know all of the medical activity that precedes the first treatments received by a patient enrolled in a research study, probably shouted: Well, it’s about bloody time!  when things got going.

I’m still finding it hard to unpack that first experience of treatment.

Was I stressed? Well, honestly, no. I do have a prescription for Ativan to help me sleep, and I don’t shy away from taking one of those teeny tiny pills as often as I need at bedtime (if developing a dependency on Ativan is the worst thing that happens to me within the next five years, then I shall throw a party in its honour!).

I headed to the CHUM, with both Simon and Christian just a held-hand away, without so much as a drop of caffeine in my system. There was a two-and-a-half-hour delay at the hospital’s pharmacy—where each patient’s list of tailor-made concoctions is prepared— so my treatment only began at 11:30 am.

My blood pressure was taken over and over during the day and was exemplary, with readings like 116/68, 113/67, 120/70…which should tell you something about my stress levels, and a lot more about the care I received from the nurses and the atmosphere in the unit where I was; and about the profoundly soothing and reassuring effects of having my sons right there with me, through all of it.

My protocol requires that 5 different drugs be infused into my body, which took 6 hours this first time, but which may be shortened in the future, if my body shows that it can endure a faster drip of one of the drugs. But before I could leave, a special infuser (which looks a lot like a water-filled balloon inside a baby bottle) was hooked up to me, and I was sent home with it in a fanny-pack—which I wore in front, high on my waist—so that it could drip, drip, drip, drip its contents into my body for 46 more hours (it was removed, when empty, at a local clinic, and my port-a-cath cleaned out).

North Face, Mount Everest

In mountaineering, the higher the summit, the more unpredictable human physiological responses become. As I sat all of those hours on the 15th floor of the Cancérologie department of the CHUM, and watched fellow patients come and go (getting tea or coffee but mostly just using the washroom), I was reminded of the old photographs of the mountaineers of the twentieth century: people like George Mallory and Edmund Hillary and their teams—their wasted faces, their battle-weariness, their refusal to abandon their quest.

George Mallory, circa 1922

 Others observations this week

2. When your life becomes the punchline

While a guest in the home of wonderful friends a few evenings ago, which ended with us all watching the movie Crazy, Stupid Love together, there was a scene in which Steve Carrell’s character has very recently been told by his wife that she wants a divorce. He’s at his work cubicle, looking forlorn and wrecked. His worried colleague drops in to find out what’s wrong and when Carrell’s character tells him, he laughs with relief and says:

Well, at least it’s not cancer !”

I turn to my son, Simon, who’s sitting next to me and say: “This kind of thing seems to happen all the time now.”

3. A lovely friend posts the following question on her Facebook page:

Would you rather have one wish that you could have immediately or three wishes you could have in 10 years?

Most of the people who responded quickly picked the second choice. I simply commented: “Easiest question in the world for me, isn’t it, P?”

Eventually, some commenters had second thoughts, and opted for the first choice. Still, though we live in a world without magical wishes, I’m stunned by other people’s insouciance—by what they take for granted.

Eduardo Lankes, Fog Clouds, 1905