15 ROUNDS WITH AN IMPLACABLE ENEMY

The norovirus

Part of the THIS IS THE MOMENT series.

It must have been the bragging.

The way I’d been stating, with wonder and pride, that in the 15 months I’d been receiving chemotherapy, I hadn’t been sick; hadn’t caught the plague that felled Christian in the late fall of 2018; hadn’t even had a cold.

Tsk, tsk, tsk. All it took was the good ol’ norovirus.

On Thursday, November 14th, thinking that I had allowed for a period of “minimum safe distance”, I drove the 35km down the TransCanada to visit my mum, who had been sick with the stomach flu since the previous weekend. Her partner, a retired physician, was taking good care of her, but he had returned to his home in the city on Tuesday to look after things there.

My mum, who is the Energizer Bunny of octogenarians, was still weak from her ordeal and in need of supplies. So I scooped homemade chicken soup from our freezer, enriched it a bit with some gently simmered vegetables, bought some Yorkshire Gold decaf and also regular tea (for guests) and a whole assortment of dry biscuits from the British tea shop here in Hudson, picked up some bananas, some applesauce and delivered them the same day.

Looking fragile, as she does more and more, my mum was nevertheless visibly jazzed to have some company, and so, with my white cotton gloves on (because you can’t be too careful with stomach flu, even after 5 days), I warmed a bowl of soup for her, made the tea, and got the cookies arranged on a plate.

Sadler, Walter Dendy; Afternoon Tea; Cardiff Council; http://www.artuk.org/artworks/afternoon-tea-158989

The conversation was lovely! My mum brightened, and soon we were talking about books and Christmas and a whole bunch of things I can no longer remember. I purposely—in spite of the multiple cups of tea—did not use her bathroom before leaving. As I left, my mum said: “We have to do this more often, it’s such fun; our conversations are so interesting.” That was mostly just a good sales pitch. Mothers want to see their children, and cancer (and the added distance between us since my move to Hudson) has made a serious dent in my ability to visit her in any kind of regular fashion.

There is so little I can do for her…so little I can do for anyone, that I drove home imbued with a feeling of having done SOMETHING to alter my general ineffectiveness.

Ribot, Augustin Theodule; Mother and Daughter; Glasgow Museums; http://www.artuk.org/artworks/mother-and-daughter-85855

The next day, Friday the 15th, Simon was invited to dinner by one of the coolest couples on the planet, Heather and Adrien: she, a geology teacher at the same college as Simon, and he, an anthropologist at Université de Montréal—who speaks at least 5 languages fluently. They live in the most cutting edge house in Hudson. It looks like something out of an upscale Wallander episode. It’s a giant wood bungalow with all of the wooden structural features (ceilings, beams, walls, the works!) exposed. It’s geothermically heated, and situated on several acres of woodland. They’re vegan and grow most of their own food (of course!). Heather and Adrien are at the forefront of preparedness for climate change. They’re also warm and kind and that’s probably why Heather thought to say to Simon: “Hey! Bring your mum!”

The evening was so lovely. Mostly, I just sat there dazed by everyone’s brilliance and the breathtaking scope of their knowledge. I’d time-travelled and somehow wound up in a room with a bunch of Renaissance polymaths.

Plague doctor masque

And then dinner was served. And as the large bowl of tasty, multicoloured (there were beets!) roasted root vegetables served over basmati rice was placed in front of me—suddenly, as though someone sinister wearing a plague doctor mask had quickly entered and exited my field of vision—I felt the first gentle wave of noro-nausea move inside my stomach. The conversation was as animated as ever, but I was retreating from it, feeling hot and sticky and clammy as the waves of nausea started to build. I forced myself to finish my meal, sitting there like a stump, while the realization of what was happening to me became clearer and clearer, and then, in the gentlest, most urgent-without-sowing-panic voice, I asked my hosts: “Is there a bathroom nearby?.”

Stainton, Alice; Trug with Carrots and Vegetables; Bushey Museum and Art Gallery; http://www.artuk.org/artworks/trug-with-carrots-and-vegetables-16026

That poor powder room. Poor toilet bowl. It was hit with a thundering cascade of totally undigested, colourful root vegetables. Once. Twice. Oh God.

Twenty-four hours after visiting my mum, I was noro-infected up to my eyeballs. Is there a more mortifying way to experience a first encounter with brilliant and generous hosts?  The odds are against it, I think.

Of course, this was just the beginning. I didn’t sleep a wink that night, and was up at least 10 more times, my stomach turning itself inside out. By the next day, it was like I had been scraped off the battlefield—like someone about whom the triage people would have said: We’re not sure about her.”

I spent Saturday in my bed, flattened under the covers, drinking only water and a bit of salt-spiked apple juice (I eventually switched to salted orange juice cut with boiled water—the hydrating mix recommended by the CHUM).

Sunday, I graduated to banana and some apple sauce and as much water as I could drink. And an extra-protein Boost I think.

I had my sights on Monday, which was my sister Danielle’s birthday. I wanted to keep my promise to her to take her out for BBQ chicken and GREAT fries (= Côte-St-Luc BBQ), and then bring her back to Hudson for the afternoon. I succeeded!

Tuesday and Wednesday, it was back to the CHUM for blood tests, my pre-chemo check-up and chemo itself. Back to the routine. Back to….just cancer and treatment. I had lost a kilo (2.2 pounds), but otherwise, I was good to go.

Except that…I wasn’t quite right. I still had occasional waves of nausea. Slight pain in my stomach. I was still skittish around food, and Simon was watching my intake like a hawk.

Then came the evening of Monday, November 25th. There we were, Simon and I, watching a movie while we ate the chicken parmigiana I had prepared. The movie was fun, the company, as wonderful as always and…oh no…my guts were out to sea. It was happening AGAIN.

This is the thing about the treatment of cancer (most especially after 15 months’ worth): it leaves you immune-suppressed. I had thought myself above this. I had developed a false sense of security. And boy, did my body let me have it. I spent another complete night heaving over the toilet bowl only this time, both ends of my digestive tract were expressing their outrage in tandem.

The next morning, with Simon off to teach but checking in with me every hour, I would have scared a ghost. I kind of looked like a ghost balloon that has lost all its air. I also had dark circles under my eyes (well, I think they appear when there’s no more moisture in your body tissue) and a chalk-white face. Every time I got out of bed (to get water, my hydrating juice and more water), I did it in stages, just to make sure I wouldn’t just slump onto the floor. I wasn’t sure I had measurable blood pressure.

And I slept and slept and slept. And when I awoke, I’d sip a bit more liquid, and then, at times, my mind would wander about, picking questions out of the air like: How many times in a row can you relapse with gastro-enteritis? Can cancer spread while you’re being desiccated by a virus? How much weight am I losing, I wonder? Will food ever appeal to me again? Could I just live on bananas instead?

 

* * *

Tuesday ended, then Wednesday, Thursday and so on. And here I am, living what should have been chemo week, but turned into a period of convalescence.

Cursiter, Stanley; Abstract; Orkney Islands Council; http://www.artuk.org/artworks/abstract-167473

It’s Friday, December 6th. I’ve lost weeks of my life, and 3 kilos (about 6.5 pounds). Chemo was cancelled this week when blood tests indicated that my calcium and potassium levels disqualified me. Well, gee, d’uh. Call it dehydration or desiccation or The Great 15-rounder with the Norovirus, but expect a person’s electrolytes to be damned scanty when the final bell clangs.

I’ve been taking calcium (mint green coloured) and potassium supplements (white and looking alarmingly like suppositories) since Tuesday morning. I feel much, much better,  but every visit to the bathroom is still a full systems check. I’m getting there. God bless electrolytes. And the love of sons who care for you and check in on you.

* * *

I hope you’ve smiled through this. Though every word of it is true, it was meant to make you chuckle and okay, cringe a wee bit too.

But during all of those days when I was just lying quietly under bedding, too tired and sleepy to read or watch Netflix or Britbox or anything else, I was still living. Lying there under the soft,  warm weightlessness of my duvet, my head propped up by three pillows, able only to watch, through the window, the light changing outside, and hear the cars and occasional trucks zip up and down the street, I was mostly inside my head.

I feel as though I’ve just lived through a dress rehearsal for my last days—for my palliative weeks. I think I got a glimmer of what it might mean to become so debilitated that I can no longer, or barely, get out of bed; that I no longer have any sort of appetite. It’s easy for me to see why I might choose not to fight. No more 15-rounders. No more rounds at all.

The norovirus telescoped from out of my immune-suppressed chemo body which telescopes from my cancerous body…the tendrils getting thinner at each remove from the point of origin, until I could barely touch life at all…if only temporarily. This time.

I was recovering, quietly, in a home that is mine and also Simon’s and soon Cindy’s too, and it’s a place where I feel loved and safe. This fills me with gratitude. A place where I’m surrounded by books and all of the human experiences, stories and meditations these contain. This brings me joy. A place where the spaces left on the walls are decorated with the faces of family members—my children and grandchildren—and the artwork of friends. This gives me hope for the future. Their future.

My fifteen-rounder has brought death closer to me, and helped me to feel less afraid.

Rand, Michael Anthony; Sunshine through Mist; Lyth Arts Society; http://www.artuk.org/artworks/sunshine-through-mist-166839

 

 

HYPERGRAPHIA

Part of the THIS IS THE MOMENT series.

November 11th, 2019

unknown artist; Chinese Script*; Division of Archaeology, University of Cambridge; http://www.artuk.org/artworks/chinese-script-194505

 Just a few days ago, I read an interview with a writer who described reading about and then experiencing what she described as hypergraphia—a clinical term which refers to the intense desire to write (or draw). The need to write one’s own story. She described the compulsion to write in the form of memoir as a very selfish act.

Of course I felt targeted by her opinion. I’ve been coming to THIS IS THE MOMENT for sixteen months, typing out essay after essay, entry after entry, and I’ve certainly been struck by the endless iteration of I, I, I, I…me, me, me, me…

And so, I do accept that I am in the grips of some sort of hypergraphia that may be needy, but isn’t pathological. I can’t accept that I might be doubly-diseased. Instead, I think that the first day after my diagnosis, when I sat down and wrote about what was happening to me, I was acting on a strong impulse to survive.

Still, as I sit down to write this, I have already filled THIS IS THE MOMENT with over 52 000 words. I’ve also been writing a regular book club blog for my favourite library, in addition to which Christian and I have been chipping away at a Harlequin romance (you read that right!) we decided to write together, and with the final chapter soon to be penned, we’ve passed the 57 000 word mark—which means we’ll have lots of editing to do.

I was doing the math the other night, lying in bed and thinking about hypergraphia, and with something like a hundred thousand words of prose drafted since the summer of 2018 (excluding Christian’s lovely words), I guess there is something compulsive about my writing.

I want to write in defense of hypergraphia. I’ve come to realise that for me (and many humans), writing is as essential as touching or speaking. It’s written thinking. It’s reaching out. It’s opening up—potentially to a crowd—by communicating to one person at a time. It can mean laying one’s self bare, privately and intimately on paper. It can also be like whispering into someone’s ear and them feeling as though you had only them in mind with your words. Writing can be the best means of sorting through what feels like chaos, pain, fear.

When the inner narrator—that voice inside your head that chatters incessantly—is paid some heed and an effort is made to capture, sort through, structure and transcribe its utterings, the result can often be salutary.

I began writing THIS IS THE MOMENT because I felt like otherwise, I would burst, or maybe implode, with the weight of what I’d learned. I did so too, because I wanted to stop shame in its tracks. I didn’t want to carry the mark of cancer alone beyond the protective wall that is my family. Writing about what was happening felt at the time, and still does, like opening up curtains to bright sunlight—letting in all of my loved ones, but strangers too.

* * *

I think that if you’re someone who writes a lot, then you’re most likely someone who reads a lot. The reverse is not nearly as probable, and that makes me feel lucky. A couple of days ago, someone close to me—to whom I’ve been sending books for years, hoping that they’ll provide him with hours of pleasure—wrote about one of these (Markus Zusak’s Bridge of Clay) on his Facebook page, even linking it with an online interview with the author. He loved reading it so much that he wanted to share his joy, plain and simple. He wanted others to have a shot at that same expansive emotion. Reading his post, my insides lit up like fireworks.

And so, hopefully, his words started a chain reaction, leading others to Zusak’s unique—and in this case beautiful—chain of words.

A person who writes will always have words to offer in lieu of their physical presence. Sometimes they’ll be arranged in a perfunctory manner, but more than likely they’ll be penned with an intention that’s a lot like the physical act of touching.

I think, I hope, that it’s the latter that fuels my hypergraphia.

Lessore, John; Woman Writing at a Desk; The University of York; http://www.artuk.org/artworks/woman-writing-at-a-desk-9812

 

 

 

 

 

HOW SHOULD I COUNT TIME NOW?

Part of the THIS IS THE MOMENT series

Begun on October 15th 2019—while waiting for blood tests and my appointment with my oncologist (which both took place) and a CT-Scan, which was postponed to next week because the machine broke down.

Henry, George; Autumn; Paisley Art Institute Collection, held by Paisley Museum and Art Galleries; http://www.artuk.org/artworks/autumn-190155

I’m close to the age when I could have retired from teaching—but I wouldn’t have.

I would have kept at it for many more years, though I would likely have become a little pickier about the contracts I accepted, not wanting to drive around the planet anymore in winter.

That was the story of my life “before-cancer-moving-from-Pointe-Claire-and-separating-from-my-husband”.

I now associate the train with life since “my-cancer-diagnosis-moving-from-Pointe-Claire-and-separating-from-my-husband” and with the hospital and treatment. I sat in the train this morning considering how routine my existence has become and yet…

As I lined up to confirm my registration for blood tests on the 14th floor this morning, I had this thought: What if you had skipped the last 15 months and just suddenly –ZIP!—found yourself standing in line here at the CHUM, feeling exactly as you feel right now?

 I would of course be terrified.

The altered condition of my eyesight, my skin (I’ve had two nosebleeds while sitting here in the first floor eating area, scribbling these notes down and running out of kleenex), my hands, feet, nails…The overall condition of my body would likely cause me to jump, startled, and perhaps shriek. My body–joints, spine, the works—is stiff and sore and rickety and alien. Without the fourteen-month-long, gradual erosion of my wellbeing, surely I would cry out in shock. Howl. And then just probably cry, frightened and uncomprehending.

Meynell, Caroline; Beech Trees; Buckinghamshire County Museum; http://www.artuk.org/artworks/beech-trees-230934

Adaptation is a marvel and an obfuscator.

What human beings can get used to… Maybe that’s limitless. Or maybe it’s like the frog that sits in the gradually warming water until it boils to death.

These past fourteen months of cancer treatment have been a kind of immersive simulation of aging, with its sprouting of aches and pains, its limiting of movement, its incremental losses.

I like to think that aging is a gentler process; that it sneaks up on you slowly, though inevitably, and that for this reason, is less cruel than advanced disease in middle-age.

MacWhirter, John; An Autumn Evening; Wigan Arts and Heritage Service; http://www.artuk.org/artworks/an-autumn-evening-162630

I’ve been observing the oldest among us. I would say “the elderly”, but that expression often comes with a hint of being patronizing. And yet, it’s a lovely word. I have been paying closer attention to our elders of late (nos aînés). Strangers as well as people close to my heart. I’ve felt that we are on the same path, mine shortened by the surprise of a new cancer in my family’s gene pool.

For as long as I can remember, I’ve thought of 80 as the age at which I would consider a person old. No scientific reason. Perhaps the simple fact that when you enter your eighties, you can pretty much figure you have less than 10 years ahead. Several of the people I love the most on this earth are in their eighties now. They’re among the fortunate, because they still have health of mind and body. It’s biomechanics that’s messing with their lives. They ache in places that have just worn out.

I often wonder about their relationship with time. Do they see every day as expansive and open—though their remaining years are numbered—and simply push death into a muted space in their minds?

Knowles, Mike; Rain Clouds Gathering, Autumn; Llyfrgell Genedlaethol Cymru / The National Library of Wales; http://www.artuk.org/artworks/rain-clouds-gathering-autumn-120090

I can’t do it. This has everything to do with the tight time box in which I live. I can’t break out of the two-week cycle of treatment and the disruption and disturbances that drag along behind it. And I don’t dare think about what will happen when the cycles of this clinical trial come to an end. So…

How should I count time now?

– By the number of chemo sessions—24 equalling roughly a year?

– By the number of grey hairs that have appeared on my sons’ heads since this all began?

– By the expansion of my love for my grandchildren—those born and those I hope to see born?

– By the mountains of books I’ve been able to read through all this?

– By the friendships cemented through this ordeal which is NOT a wasteland?

– By the number of seasons that have passed: mindful of the sounds of each, the smells of each, the beauty of each?

– By the people I’ve met online as a result of reaching out blindly?

– By the length of the list of chemotherapy side effects I now live with?

– By the quality of the regrowth of white baby hair that now covers my head?

– By the number of evenings spent in the den with my sons and friends, wrapped in soft blankets and binge-watching shows on streaming channels, and DVDs?

– By the number of Dungeons&Dragons sessions I’ve participated in since my diagnosis?

– By the number of times I’ve stepped out the front door of this house in Hudson, inhaled deeply, and felt the goodness of the air?

–  By the losses of loved ones that have come to pass these last 14 months, each a warning, a wake-up, a reality check?

–  By the number of days’ endings, during which I snuggle into my bed propped up by a sultanic mountain of pillows and read till my eyes can no longer stay open?

– By the recurring meltdowns I’ve experienced—all fight drained out of my mind and body and sadness moving in?

– By my increasing, constant resistance to being trapped inside a small life of two-week cycles?

– By all of the lessons I’ve learned since having the wool peeled away from my eyes?

– By the degree of my transformation into a wizened and hopefully wiser woman?

– By the growing sense of an ending that I am moving toward ?

– By the increasing understanding that pain and love are a two-sided coin: the more I have experienced sadness and anguish, the more I have turned to love and the state of grace it makes possible?

Jaroslav Panuska Death Looking into the Window of One Dying (1900)

 

This IS the moment

Part of the THIS IS THE MOMENT series.

 September 30th 2019

On Friday, September 27th, Greta Thunberg came to Montreal to speak a little, but mostly, to act as a beacon—a shimmering example of what it means to have the courage of one’s convictions.

She, with her diminishing body (at least that’s what appears to be happening to her as her self-sacrifice to the cause of climate change siphons her energy), but growing presence on the world stage, is doing more than it seems possible to ask of any human of the twenty-first century.

She spoke very briefly and shyly before the march began. Her presence was enough: Montrealers were galvanized. Somewhere between 300 000 and 500 000 men, women and children showed up to the “Strike for Climate Change”.

Crowd on Mount Royal, September 27th, 2019

My city was so beautiful that Friday. The turnout: unimaginable.

I had been invited by my good friend Ann to join her and her party at Mount Royal (or Mont Royal). Alas! Though every cell in my body—even the malignant ones !—wanted to be there….

  • To REPRESENT;
  • To add one more person to the crowd;
  • To YELL how critical the imperative to radically transform our way of living on Earth is.

I just couldn’t:

  • Stand for 4 to 6 hours;
  • Risk exposure to pathogens in such an immense crowd;
  • Walk around for hours and hours with no reasonable hope of finding a bathroom (chemo leaves poisons in me that multiply my visits to the toilet as my body’s filters fight like mad to clear it all out).

So, sadly, and instead, I sat for hours in front of my laptop (we don’t have cable) watching  the CBC live feed–as unscripted and as raw as such things get.

It wasn’t what it could have been (for me that is), but I did feel part of that happening. I felt joy. My heart beat faster as I scanned as many faces in the crowd as I could, trying to gauge the energy levels there on the ground, and the benevolence, the generosity of spirit, the commitment of the marchers.

They were THERE, commingling, and I was tucked 60 km away in Hudson, but I received so much from them. I was hope-filled. Maybe Montréalais (and Québécois?) are truly ready for the massive change that MUST begin—the complete paradigm shift we will hopefully survive—still connected and caring about each other and about our home planet.

It’s a maybe I want to put stock in. A few weeks ago, as a bunch of us—all of them friends who were originally Simon’s and Christian’s from work and other parts of their lives, men and women across several generations—played D&D together, one of the men, a dad in his mid-forties, said, regarding the Strike for Climate Change that still lay ahead: “Forget my generation [he’s Gen X], and every other older one. My generation went for the money, just like the rest did. it’s humans under the age of forty who have to take the reins and change the world.”

 I think that intuitively, we all felt the truth of his words—the “You can’t teach and old dog new tricks” fatalism. But why accept that view?

The week following Montreal’s Greta-inspired strike, a La Presse columnist wrote a piece about the energizing effect of the event and the high so many were coasting on in its aftermath. And then he doused his readers with cold water. With the next federal election just a few weeks away, despite the regular sounding of the climate change alarm and the hundreds of thousands who marched with Greta in Montreal, according to the most recent poll, climate change is the number one issue for only 21% of Quebecers, whose top concern is taxes and the economy: the deciding factor for 36% of Quebec voters. Of no comfort at all is the fact that in the rest of Canada, 43% consider taxes and the economy most important.

Allen, Tim; In the Future; Arts Council Collection; http://www.artuk.org/artworks/in-the-future-63049

Despite the negative effects of chemo on my eyesight, this rapprochement with death that I’m learning to accept as I live with advanced cancer has given me a different sort of clarity. When you live outside of the daily presence of death and dying, it’s so easy to cozy up to the illusion of a slippery, sliding timeline; to think of the future as something always there…undefined but lying waiting for you…And what gets lost is the urgency to live fully, which requires that you care about every moment.

How Greta Thunberg came to live with that sense of urgency is a mystery to me, though I suspect that there are far more humans like her than we might think—people who want to live long and full lives but who take not one day of it for granted. Such mindfulness can be a burden. It makes of some of us canaries in a coal mine.

On September 27th, I felt love for Montrealers and gratitude towards Greta Thunberg.

https://montreal.ctvnews.ca/video?clipId=1791612

If you accept, as I very much do, that our beliefs, thoughts and intentions affect the physical world, then you may have experienced Friday’s march as a noetic event. A moment of elevation.

The people I know who were there on the streets, united in this single cause, felt it. All of them. Ann and her group. Cate and her gang. Anne-Marie and her companions…

Montrealers came together and lifted their faces to the sun, the blue and the clouds, and were passionate and impatient and sincere in their worry, and jubilant, offering their prayers for a future for all. It was a marvel to witness.

Montréal, je t’aime.

 I’m always at risk of having hope, lightness of being and belief in the future trampled by my cancer and its effects.

Taylor, Sarah; Still, Self, Life 3; Southampton Solent University; http://www.artuk.org/artworks/still-self-life-3-17311

Greta and my beloved Montrealers have helped redirect my energy. OURS is a fight worth engaging in. A future for everyone. The collective joy of being alive and filled with shared purpose.

This IS the moment.

Gunn, Chloe; Contemplating the Future; Imperial Health Charity Art Collection; http://www.artuk.org/artworks/contemplating-the-future-251238

 

THAT SMALL STIFLING PLACE

Fire Tree,

Part of the THIS IS THE MOMENT series.

A month ago, at a time which roughly coincided with the beginning of my second year in this clinical trial and the repetitive sameness of the life it has reshaped for me, something unexpected happened.

It was Monday morning, the chemo week Monday when I head into the CHUM to have my pre-chemo blood tests done, and to see my research nurse and one of the oncologists from the team who treat my cancer. Every part of this day is so familiar that it has become routine—from the moment I hop on the train at Ste-Anne-de-Bellevue to the moment I get out of the metro and follow the short tunnel that leads directly underground to the first floor of the CHUM.

I often stop at the small café there and grab a decaf coffee before heading toward the elevator that takes me to the 14th floor. Once there, I immediately register my presence by swiping my medicare card under a scanner which then issues me a small white paper on which is written a number—something like PL025 (PL for prélèvement, or blood test). My nurse and doctors are also immediately notified of my arrival. It’s a routine I’ve performed dozens of times since I first began treatment. But four Mondays ago, nothing went to plan. The moment I stepped off the metro and started my walk, something wavered inside me. My autopilot shut down and with no warning at all, my eyes filled with tears and there was such pressure in my throat that I could barely swallow.

I was coming undone. Having some sort of quiet but perfectly visible meltdown. I continued walking down the hallway, past the angelic guard who greets every single passerby with a smile and words of wisdom, taking deep breaths and waiting for this destabilizing malaise to subside, but a wobbly inner voice repeated only Oh-oh, you won’t be able to get it together—you won’t be able to stop crying…, drowning out the part of my brain where my wits were being overridden and which shouted: “What the hell’s going on? You’ve never felt this way before. You LIKE the CHUM. It’s Monday, the EASY day. Get a grip!

 But then came that vacillating, gushy need to cry again…

God. Well, this was a new low. I entered the elevator with shiny red eyes and the sniffles. Once on the 14th floor, I scanned my card while snot clogged my nose and throat. You know this feeling if you’ve ever had a good sob. Your pulse is elevated, you feel unsteady. Your breathing is shallow and rapid. You tremble. It’s completely embodied.

When my nurse, Chantal, arrived to greet me and asked how I was, I blubbered, like a baby, a rambling apologetic explanation that contained a lot of sorrys (or in this case, Désolée, Excusez-moi), rattling on about not being sure exactly why this was happening, although I did have similar experiences at home; that it didn’t even mean that I was sad, that it was just my wonky filters…

Chantal, who is the most serene human being on the planet, smiled gently, then hugged me and reassured me that I wasn’t the first patient to have emotions like this, and that she would be back once I’d had blood drawn, and we’d do my weigh-in + vital signs before seeing the doctor. Business as usual, was her message.

illustration by Jon Han, New York Times, June 25th 2016

 And so I sat and waited with sorrowful pink eyes and Kleenex in my hands, feeling mortified. I was on the cancer floor—Cancérologie—and I was such a depressing sight! What must the rows and rows of fellow waiting patients be thinking as I sat or walked here and there. Her treatment must be going poorly, or She must have recently received a brutal diagnosis or bad news…

And STILL, my chin was quivering, my mouth was dry, my breathing was shallow and my eyes, determined to remain fountains. When I was finally called in to see the oncologist, it wasn’t my primary physician, Dr. Aubin; it was Dr. Loungnarath, a lanky, curly-haired, imperturbable, youngish gastro-intestinal surgeon in oncology, who greeted me.  And of course, the minute he asked: “Comment allez-vous?”, I started blubbering again, as Chantal watched, still smiling at me with compassion.

Dr. Loungnarath looked at me, and said (in French): “Well then, we’re going to give you an extra week off.” To which I responded a shaky “Thank you, I think maybe I’m a little weary (sniff-sniff).”

(Surely there are more dignified ways to get an extra week off from chemo.)

* * * *

I was back in chemo last Wednesday, smiling, and my composure regained. My veteran patient’s game face back on. But this time I carried with me a slight fear, or perhaps more of a doubt that I can count on myself.

What happened three weeks ago?

What short-circuited all of my defenses and let the floodwaters loose? (and what were those waters all about?)

I sat down and made a list of possible suspects, of possible triggers. It includes:

How small my life feels at times.

How circumscribed my days are.

How similar the weeks are: one on/ one off.

How small is the loop I live in.

How altered the future appears.

How I feel from day to day—the limitations of my body going through chemo

The limitations of my body in illness.

I suppose that what this amounts to is fatigue and a deep, bone weariness, that I’m mostly conscious of when it reaches a tipping point.

And this is how and when I slip into self-pity.

In her memoir Gather Together in my Name, Maya Angelou wrote that : “Self-pity in its early stages is as snug as a feather mattress. Only when it hardens does it become uncomfortable.”

Have I allowed myself to snuggle up with such a nasty emotion? It just may be. And if so, then I can say that self-pity is a small, stifling place that I don’t want to go back to.

Since then, so many things have washed over me. One of them was a simple conversation with Simon one evening in the den, where we were watching Netflix together. It was perhaps one of the more melancholy and intense shows, and we started to talk about sadness, and how people deal with the pieces that are missing from their lives. Simon always has a broad perspective, and as we chatted, he mentioned that human beings are programmed to fixate on the negative aspects of their lives—on the missing or broken pieces; and he said that if you tell someone 25 positive things about them, and 1 negative thing, that they will almost surely fixate on that one negative thing…That we are made that way, And so he said: I try to not allow my mind to go there—to those places of dissatisfaction and unhappiness. I try not to let my thoughts wander there. And I say to myself: you are one of the luckiest people in the world. You are one of the luckiest people in the world.

 And I smiled. Because I remembered an exercise I used to have my students do in French classes, It was a questionnaire designed around select statistics and the world population. Things like: How many people in the world earn less than $5 a day? How many people earn less than $10? $2? What percentage of the world population has a university education?…

And of course, the survey revealed two things: the first was that, by and large, most people have shelter, access to potable water and access to the internet via cell phones; the second was that everyone in the classroom, because they are living in Montreal, is likely to find themselves among the top 10-15% of the world population in anything that’s related to affluence and abundance, and a social safety net, and standard of living.

I remember how the first time I put a group through this (I had them guess at the numbers in teams—they chatted away like mad), all I felt was indecently fortunate.

And so, Simon’s exhortation to focus on our common great, good fortune; and on the plenitude that is ours; and on the love, friendship and family; and to make gratitude a habit…

Well…it sure beats self-pity.

As a matter of fact, at a time when we are actually speaking in urgent and terrifying terms of apocalyptic climate change and mass species extinction, my self-pity is indecent, and I am a sorry-assed human.

If my tone slides back toward that small, stifling place, tell me to shape up.

Lakey, Andrew; Angel of Hope; RNIB College Loughborough; http://www.artuk.org/artworks/angel-of-hope-80857

 

WE BUILT A CATHEDRAL

Part of the THIS IS THE MOMENT series.

We Built a Cathedral –A poem by Michelle Payette-Daoust

 

Thoughts about the marriage I have let go of

and words to the husband who, like me, continues to move on…

 I look at my hands,

thinner and made darker and damaged by chemo:

These are not the hands you knew.

I look at my body, frailer,

and hiding just beneath the skin of my upper right chest, a port for chemo:

This is not the body you knew.

I  look at my life, now lived in this country town,

in this new house in which I feel no ghosts, no memories, no shadows and no sadness:

This is not the home we knew.

 

On a clear and cool September day in 1980, I said—

filled with tender love and hopes for the life that awaited us—

I will love you always, till death parts us.

 

These vows,

taken and uttered with such purity of heart,

have not weathered time and storms and exhaustion.

 

We built a cathedral that we cannot live in together

—our family—our magnificent sons and grandchildren;

yet it stands, solid, sacred and majestic. It inspires many.

 

I am sick. My time may be short.

Here is my life. It did, and didn’t, go to plan.

In most ways though, it chimes. It rings. It peals. It tolls as loudly as it ever did.

It resonates in me and through me, transcending the birds.

 

Allen, Kathleen; The Last Bus; Leamington Spa Art Gallery & Museum; http://www.artuk.org/artworks/the-last-bus-54609

MY CAREFULLY CONSTRUCTED SELF

PART OF THE THIS IS THE MOMENT SERIES.

August 19th, 2019

I’m alone this morning. Christian now lives with Vickie, at her place in Verdun, and Simon is easing his way back to work at John Abbott College. That leaves me here, in a quiet house for a few days at least.

The sky is backlit that strange yellowy tint that is a harbinger of thunder showers. The smoke tree across the street looks like it’s glowing.

The smoke tree

I awoke at 3:30 this morning. It happens sometimes, usually when I’ve gone to bed early. It isn’t a problem unless it’s on one of the nights before I have to go to the CHUM. Then it can make me a bit anxious and worried that for some inexplicable reason I’ll sleep in and miss my train. Like tomorrow, when I have a CT-Scan scheduled, or something added to my usual alternating weeks of “peace and normalcy” vs “chemo” (which requires me to be at the CHUM two days, and then head to the clinic in Rigaud—a 15 minute drive from here—on the Friday, to be unplugged from my Fluorouracil (5 FU) infuser).

It’s become quite a grind.

When I woke up this morning, in the predawn hours, my thoughts went—as they’ve been doing for a few weeks now—to the reality that this Thursday, August 22nd, which is Christian’s 28th birthday, will also mark the 1st anniversary of my bi-weekly chemotherapy treatments. It’s a jarring juxtaposition to say the least, but it’s certainly easy to remember and, come to think of it, the fact that it will always evoke my lovely Christian is gentling.

Our human minds are set for patterns and cycles and chronologies, which are useful for making sense of the life teeming around us. We understand the need to become accustomed to beginnings and ends. And change. And the evolution and devolution of things (well, most of us do). And that’s why, inside my head, there’s an invisible wall with chalk marks like those the Count of Monte Cristo scratched out in the Château d’If.

Those marks, that counting of days, is of course one of the devices that helps me cope with my stage 4 cancer and its treatment. I was put on this uncompromising, hopeful, difficult, medicalized path last year. As you know, there was real serendipity involved in my being chosen for this research protocol/clinical trial.

I’m not sure what the tone of this missive to you will end up being. I’m not feeling sad. But I’m feeling one year wiser. There are so many things I know now that I didn’t then, despite watching both my parents and so many others go through cancer treatment.

That’s because there’s the visible journey, and there’s the inner journey.

How strange! As I sat writing these last sentences, a Mary Gaitskill quote from my We Croak feed just pinged on my phone. It states:

To be human is finally to be a loser, for we are fated to lose our carefully constructed sense of self, our physical strength, our health, our precious dignity, and finally our lives. A refusal to tolerate this reality is a refusal to tolerate life, and art based on the empowering message and positive image is just such a refusal.”

Farquharson, Joseph; When the West with Evening Glows; Manchester Art Gallery; http://www.artuk.org/artworks/when-the-west-with-evening-glows-204968

It’s a strange coincidence that places before my eyes a (partial) reformulation of what I’m trying to get at, just as I’m struggling to do it, and at the same time, brands me with weakness as a writer if I tip toward a positive message…

Well, Mary Gaitskill and I are looking through a similar lens this morning, though our predispositions and perspectives differ.

If I understand her correctly, Mary Gaitskill is saying that death is ever present; that to be alive is to live with the daily encroachment of the finality of death, in the form of constant, incremental loss.

Of course that’s true, but also, not the whole story.

During this past year, I’ve clung to the gift of a clinical drug trial because it WAS a gift. It lifted me out of utter hopelessness and the terrible, threatening inevitability of the painful progression of my disease. It helped me to see and feel something other than fear and grief. It offered reprieve. It lifted my eyes to a new horizon: much shorter,  and somehow hazy and impossible to visualize—or maybe that’s only because in all likelihood, it’s just another, less frightening path to an earlier death than I had imagined for my life. It sprinkled all of it with the tiniest amount of irrational hope—of the kind that allows a thin voice inside my head to whisper every now and then: Maybe you’ll win the cancer lottery and your tumours will just disappear or halt in their tracks.

I usually walk myself back from those thoughts, because though they’re necessary, they can also steer me too far from the here and now.

And that’s what this anniversary is really about. Negotiating the here and now. Every second of every day. Because I am aware of each passing second, or at least, more aware than most people, though I DO escape the tick-tock now and then and it is salutary (Mary Gaitskill be damned).

I  wake up in the morning with my eyes glued shut by a gel that does what my tear ducts can no longer do. I remove the gloves that cover my hands upon which I slather a balm every night, to slow down the deterioration of my skin and nails. I observe the latter, which look like they may be headed towards disappearing altogether, as my cuticles encroach on the nails, which are frail and sickly and cracked and beginning to separate from the nail bed, producing a u-shaped white area on the top part of each finger nail. I often wake up stiff and sore and stumble to the washroom like an octogenarian with bad hips and feet. I take two pills in the morning and then wait 30 minutes before I can have a cup of tea (otherwise I can get heartburn). Everything I do in the kitchen, from starting the coffee maker to buttering toast hurts my hands. My nose is coated with a thick layer of hardened snot because my mucus membranes are working overtime to protect my sinuses from the fate my hands and feet are succumbing to. When the snot fails, I have nosebleeds (which can be triggered simply by standing up). My feet, ankles and lower shins are weirdly painful, stiff and numb at the same time.  The inside of my mouth is red and hypersensitive (most of these issues are caused by the damage done by chemo to my epithelial cells).  Although my eyelashes have grown back (though they’re thinner), I no longer wear mascara because I have to put drops in my eyes every two hours or else they burn and I can’t open them in sunlight and my vision  gets wonky (again, epithelial issues—my corneas, in this case). No need to add mascara stains to that sexy mess. Last week, I was sick a whole day simply because my gut can’t handle food that has been in the fridge more than a few days (though everyone else enjoyed the chocolate sauce on their ice cream with no repercussions. Sigh). If I drink even an ounce of wine or beer, my hands burn (I still do, a wee bit, every now and then). My new shock of white hair is so soft it feels like petting a bunny rabbit. Last week, while with my grandchildren, I was on my knees assembling two one-hundred-piece puzzles and playing a round of Mouse Trap. Three days later, I noticed a very dark thick scab on the edge of my right knee. Confounded, I showed it to Simon who said: “You did that while kneeling down when you were playing with Penelope and Graeme!”. I’m not sure if I’m more upset that I didn’t even register the sore, or that it happened that way in the first place.

There’s more stuff like this. There’s the time spent going back and forth to the CHUM and to the pharmacy. There’s never knowing which days I’ll have lots of energy and which days I’ll feel frightened by my fragility.

It’s no longer possible to say mind-over-matter and push my body to work and go, go, go! Dinner out may or may not be pleasant; easily digesting it can be hit and miss. Just plain keeping up with the world is a gargantuan task for me. This is the cost of treating my cancer.

I cannot see the far horizon, or if I do, I am no longer in the frame. My children and their children are, though, and that gives meaning—profound meaning—to my here and now.

Gill, Madge; Patterns*; London Borough of Newham; http://www.artuk.org/artworks/patterns-249289

I had a difficult phone conversation today with someone very close to me. It required me, at the very end, to speak emotional truth that I knew the other person was not prepared to receive. It was very upsetting, stirring up old wounds, old traumas. But what has struck me since is that the pain of that conversation also traced a path directly to truth and to the cost of love.

This is the framework of my inner journey. What it feels like in here. Some days it’s tunnel-like, sometimes dark and cavernous. Other days, it’s like being lit up by fireflies at night. I feel electric and consciously alive in a way I had never previously experienced. That light is what life and love feel like. They illuminate our way. To the end.

Shackleton, Keith; Albatross Escort; Nature in Art; http://www.artuk.org/artworks/albatross-escort-62610