AT THE END OF THE DAY : recent observations from chemo base camp, part 2

September 20th, 2018

Last Sunday, a full 11 days into my second chemo cycle, when my energy and spirits should have been restored, I tumbled into sadness again. It started in my bedroom, at day’s end, just like the previous time. It wasn’t as easily shaken off. It stayed longer. The next morning, as we crossed in the kitchen before he left for work, Simon asked me how I was, and I started to tell him what had come over me the previous night, and then, right there in the kitchen, with no means to stop them, the tears started pouring out again.

Imagine behaving in such a way with someone about to set off to a heavy, fairly stressful day? (there was lots going on at John Abbot College this past week). I couldn’t help it, but it didn’t last long, in part because Simon stopped and spoke to me in a way that was immensely helpful—a mixture of empathy and scientific objectivity— and also, I think, because before finally falling asleep on Sunday, I’d had time to do some self-interpreting.

I’d had a happy, gorgeous Sunday. It was warm and sunny, and my son Jeremy, daughter-in-law Anne and Penelope and Graeme, my 6 and 4-year-old grandchildren, were coming for the day.

We had fun! They were so delightful, so happy to be here with their parents and uncles and me, their grand-maman. But Penelope was nursing a cold from her first few weeks back in school (grade 1), which meant that I wouldn’t be able to touch her or hug her; and even though this was apparently explained to her easily enough, it stuck with me. It hurt.

A little later, maybe because she was watching Graeme doing something physical outside in the yard, I heard Penelope say: “Oh mama, what if this cold never goes away?”

Sigh. The flash of a child’s anxiety whose tiny echo reached me in a way that it couldn’t have reached anyone else.

And then, very soon after, Graeme retrieved a small dragon stuffie that had been left by accident in the toy box at our house after his last visit. When I told him that he could just bring it back home, he looked up at me and said: “It’s okay Grand-maman, I want to leave it here. You can take it and put it in your bed and when you wake up, you’ll think of me.”

Graeme’s stuffie

 Sigh. Well, I did it of course, and since then, I often hold it close to my chest when I’m curled up in bed. Yesterday, it travelled to chemo with me.

The prescience of children is astonishing. They know deeply, without knowing all.

My hair is falling out— “thinning” is what my nurse and my hairdresser say, but at this rate, there’ll be nothing left in a matter of days or weeks—and it’s having a demoralizing effect. On that day, it got me thinking that it’ll soon be necessary to tell P&G something about what’s happening. The thought of causing anyone I love pain is a constant torment these days.

The view from my bed

At bedtime on Sunday night, these thoughts got all tangled up with the medical experiment that my life has become, and it occurred to me that contrary to the experiences of my mum, whose chemo 5 years ago lasted 3 months; and to the journey of a former neighbour and friend, whose chemo lasted 6 months, I still had no idea when my chemo will end. In spite of all of the love and support I receive EVERY DAY, there is still a knot that forms itself inside me: a mixture of fear and fatigue and a sense of somehow still being alone in this drama, and of regret, too, that any of this might infect the wellbeing of anyone around me, and anyone who stays in touch, no matter the distance that separates us.

Haircut, in hope of saving it!

 

 

 

 

 

 

 

Receiving chemo , cycle 3

 

 

 

 

 

 

 

 

I found a Frida Kahlo quote the other day that describes the human journey perfectly:

At the end of the day, we can endure much more than we think we can.”

HERE’S MY CHEMO COCKTAIL MENU AND THE ORDER IN WHICH IT’S ADMINISTERED TO ME EVERY 2 WEEKS:

  1. Nivolumab 240 mg, IV
  2. Decadron and Zofran  : 2 capsules each, orally, pre-emptively, to control the nausea that’s cause by Avastin
  1. Avastin 320 mg , IV
  2. Leucovorin 704 mg, IV
  3. Oxaliplatin 150 mg, IV
  4. 5 FU (Fluorouracil) bolus *
  5. 5 FU (Fluorouracil) 4224 mg, IV /46 hours **

Notes:

*A bolus is a single dose of a drug or other medicinal preparation given all at once.

The infuser of 5 Fu (hidden below) is attached to the port-a-cath in my chest, with lots of bandaging to make sure it stays on.

**I also receive a huge dose of the same 5 FU. An infuser bottle is filled with it and hooked up to the port-a-cath in my upper right chest. From the moment I leave the hospital, to the moment it is removed 46 hours later at my local CLSC, it will continuously pump 5 FU into my body. So really, my chemo lasts 3 days. The infuser is with me everywhere I go for those 2 days, in a fanny pack I wear just below my breasts, in a kind of reverse-geisha look. It infuses best at body temperature and so stays very close to me, except to sleep, when I then must sling the fanny pack over the bed post, and kind of hide it behind my pillow, without moving too much and accidentally pulling on it in my sleep. This seemed like something impossible to adhere to, or at least a guaranteed insomnia inducer, but so far, it hasn’t been as bad as it sounds.

The last three drugs on the list are part of what is a standard protocol for treating colorectal cancer, nicknamed Folfox (which is less of a mouthful!).

Simon keeping me company (and correcting tests) 🙂

Because my cancer is a wanderer, I’m also being given Avastin (that’s the name it’s sold under, but it’s actually Bevacizumab, which, frankly is a terrible tongue-twister and sounds even nastier when you try to say, in rapid succession, Nivolumab / Bevacizumab, which I honestly couldn’t manage at first but which the oncology team were just whipping out like nobody’s business).

The view from my chair at chemo

But the central piece in the research protocol I’m participating in is Nivolumab, which is nothing like the other drugs, as it is an immunotherapy drug:

It is a human IgG4 anti-PD-1 monoclonal antibody. Nivolumab works as a checkpoint inhibitor, blocking a signal that would have prevented activated T cells from attacking the cancer, thus allowing the immune system to clear the cancer…” (from Wikipedia). The science on Nivolumab is high level but largely inaccessible to most people, because the papers are far too technical. I rely on my son Simon and his PhD in biology, to vulgarize it for me. What he’s read is very exciting so far.

One of the chemotherapy rooms at the CHUM

This is given to me over a 5 to 6-hour period, depending on how efficient the hospital lab is on that day. It’s a massive chemical blow, and some of it, like Oxaliplatin, is really just pure poison. Though I’m called in at 9 am and usually arrive there at 8 am to signal to the pharmacists that I’m present (and can they please get cracking making the mixtures?), I have never begun my infusions before 11 am. It’s a long day, but I’m in such good company—with Christian, or Simon, or both, and next time, my friend Louise— and the environment itself is so bright (all the exterior walls are windows) and brand new, and actually quite convivial, that though the hours pass slowly—there’s just no getting around that—they pass peacefully. I feel that I am in good hands.

I always travel there by train, and usually get home the same way, except that Simon’s car or my car are waiting in the parking lot at one of three stations (depending on circumstances and schedule and weather and parking availability), and that’s how we finish our journey home from the CHUM. A 60 km trip from door to door.

A lot is sacrificed to the beats of a life in chemo. Work, insouciance, freedom, wellbeing, energy, personal vanity…

The days are not expansive. They are calibrated and limited by the physical energy that’s available.

The needs of the body are merciless and will not allow neglect.

I am at basecamp, in full view of the mountaintop.

Innes, James Dickson; Arenig Mountain; Glynn Vivian Art Gallery; http://www.artuk.org/artworks/arenig-mountain-227067

 

THIS IS NOT REALISM

September 11, 2018

Every time I’m at the CHUM for blood tests and examinations and chemo, I’m given some new form to fill out and more information to read. The forms are always given to me by my pivot nurse, Chantal, and are usually questionnaires designed to track the side effects of the chemotherapy protocol I’m following. Most of the questions are on a gradient—0 meaning never/none and 10 meaning severe—and are concerned with the kinds of things that I would rather never have to think about again, such as constipation, diarrhea, fever, fatigue, loss of appetite, pain, neuropathy, depression, etc.

Chantal, who is perhaps a few years younger than me, is just about the gentlest person on the planet. She’s infinitely patient and always speaks in the most soothing voice. There isn’t a speck of  distance in her attitude, or in anything she says, but rather, a deep, compassionate desire to help, to alleviate, to reassure and to bring me within reach of healing, and perhaps something more. Chantal wants to bring me to a state of health, certainly, but also to a state of peace.

Or at least, this is how she makes me feel. As she spends more time by my side, and also with Simon and Christian who have been there with me at the CHUM almost every moment, we are being transformed by her vision of cancérologie (in English, cancerology, though I think it’s used less commonly).

Chantal never uses direct verbs like beat and battle when referring to the many-diseases-with-one-name (because that’s what cancer really is). The word cancer comes up the same way fever or headache or nutrition or sickness do: they are dimensions of an experience that is simply a part living—and staying alive.

Anselm Kiefer. The Evening of All Days, the Day of All Evenings. 2014.

I have Chantal’s work email, I have her work phone number, and I have her home phone number. I’m meant to use these any time anything goes wrong or any time I’m concerned with the seriousness of a symptom, such as fever. I try never to invade her private time—her weekends and evenings—and so far, things have worked out.

What a choice she has made, to give such a crucial part of her life to the intimate, very personal treatment and well-being of cancer patients.

Since the beginning of my odyssey at the CHUM, I’ve been given forms to fill out, check lists, pamphlets, booklets and file folders full of “what to expect” information about my illness, its treatment and all of the possible hazards and side effects that may be in my future. It was, and still is, overwhelming. I’ve found it difficult to dive back into it all once I’ve left the hospital.

I did, however, read the small book on colorectal cancer. Every page I turned moved me through the stages, 1, 2, …until I had reached mine. In the treatment section, the first word I read was PALLIATIVE.

I was unprepared for that. It hit me hard. Palliative: a word I associate principally with end of life care. Which is a beautiful, valuable thing, but speaks of a destination that I know I have not reached.

It was still early on, and I hadn’t begun chemo yet, and I felt the scorch of that word as though I’d been branded. Then, I remembered the words of the surgeon who had given me the formal diagnosis: she had simply said “We’re treating a chronic illness now.” This, too, is what palliative means: the treatment of an illness that cannot be cured.

That’s my fate. To live as long and as well as I possibly can with an illness that has dug deep into my body. In this way, I am like men, women and children with diabetes, multiple sclerosis, heart disease, lupus, cystic fibrosis…Our individual situations are not identical, but I do feel that I have joined the company of people who share an awareness of the body’s vulnerabilities, of the constant possibility of suffering, of the medicalization of their lives, of the need for daily courage, and of the great good fortune of being alive.

Horner, Marguerite; Walled In by Feelings; Swindon Art Gallery; http://www.artuk.org/artworks/walled-in-by-feelings-230379

In my situation, hopefulness can look an awful lot like denial. It isn’t. Before the chemo started, especially, I had low and lonely moments when I wondered whether it wouldn’t be better to keep my bedroom in our new house as neutral as possible. It seemed better not to leave too deep a footprint in my room, or in the office I share with Christian. I wondered if I should stop ordering books online. I realized how silly it was to worry about developing a dependency on Ativan to sleep…It was the least of my worries, surely. I had become a far more subdued version of myself.

This is not realism. It’s fear and sadness and confusion. It’s what happens when these cause us to cut ourselves off, even only briefly, even only in our minds, from the sources of love and support in our lives.

One night, as I lay in bed, I closed my eyes and said: “I trust in love. I abandon myself to love”, and I forced the corners of my mouth upward just slightly, and a feeling of peace came over me.

I repeat this every night.

Ziegler, Toby; I’m Ready for Love; British Council Collection; http://www.artuk.org/artworks/im-ready-for-love-177115

MY FEAR OF ETERNITY

Artist Vincent van Gogh
Year 1889
Catalogue
F612 JH1731
Medium Oil on canvas
Dimensions 73.7 cm × 92.1 cm (29 in × ​36 1⁄4 in)
Location Museum of Modern Art, New York City

There was a time, in my childhood, when I often lay awake at night, silent as the grave, perhaps listening to the breathing of my sister Marie, asleep in the bed next to mine. Hers was against the wall of my parents’ room—which may have given her all kinds of things to dream about—and mine was against the opposite wall, right under the double window, which allowed me to push aside the flowered curtain a bit, and stare up at the night sky.

I think it’s that view of the immense darkness, into which it was still possible to glimpse an abundance of stars (there was less light pollution then), that triggered the cascades of anxious thoughts that returned to me, often, in the night.

By the time I was 8, I had experienced several deaths in the family; had seen my father break down and cry at the dinner table after his mother died (we were on summer vacation in Cape Cod when we received the news and had to pack our things up and return home); had already been to the funeral parlor more than once and witnessed an open casket. I remember feeling caught up in the distress and sadness of others, and understanding to a surprising degree the finality of my separation from those who had died.

When I stared up into the night sky from my bed, as a child, what I saw was the wondrous and terrifying possibility of eternity. Children whose upbringing includes almost any form of religious education are soon introduced to the notion of an afterlife. Their parents do this because it’s what they’ve learned and probably firmly believe, but also, because it’s immensely compelling and comforting to know in your heart that those you have lost—a parent, a dear friend, even a stranger whose accidental or violent death has shaken you, and worst of all, a child—have “passed on” to a better place and so, still exist, and remain somehow accessible to you through prayer or some form of spiritual, immaterial or noetic connection.

I accepted this notion of enduring, lasting contact with those we’ve lost because of course it made separation from them less cruel. It made it endurable. It seemed to bring peace to the adults in my life who were suffering. It was part of a child’s imaginary universe of “ever after”, so beautifully laid out in the bedtime stories that are read to us in childhood.

And then, one night—I have no idea what primed me for the state of anxiety I found myself in—as I lay quietly in bed, the idea that when I died, I, too, would go on to live forever and ever and ever, struck me as something truly disturbing and frightening. It was good to imagine the grandmother I had lost looking down at me from a vague and peaceful place, but it was entirely different to cast myself into a mode of existence that would be vast and infinite. Being with Jesus, or being with my lost relatives forever no longer felt soothing. As a school-age child, wrestling with the notion of eternity, of existence going on and on and on and on and on…in a form that my mind could not grasp—that none of our minds can grasp—it kept me awake, tossing and turning.

My photo: doorstep, Fall 2013

I’m not sure why, but I never brought this up with anyone during all of the years of my growing up. I suppose that I did what many (most?) of us do, which is: experience life, gather empirical evidence, keep asking questions and searching for answers, remain curious and open, seek out sources of illumination, recognize the people who seem to carry within them a luminous quality, and people whose effect on those around them is always positive, as though they were infused with some sort of spiritual grace; and finally, read, read, read, read all kinds of books. Books about death and dying, of the type pioneered by Elizabeth Kübler-Ross, certainly, but fiction is also full of profound storytelling on the subject that often reaches us empathetically far more quickly than most other written works, and I never shied away from those.

I can’t help but wonder, though, whether my intuition hadn’t been sending me messages for a long time, because some of the most magnetic, most affecting books I’ve read in recent years have been memoirs of the dying, the grief-stricken and the suicidal: not one of which was anything but inspiring. The first of these was Joan Didion’s acutely observed Year of Magical Thinking, followed by Matt Haig’s Reasons to Stay Alive, a brave and straightforward book about severe depression, by a favourite, sweetly funny author. There was also Paul Kalanithi’s When Breath Becomes Air, one of the most beautiful, most precious books I own. More recently, there was Cory Taylor’s Dying: A Memoir, which I read just months before my own cancer diagnosis, and lastly, Natalie Goldberg’s Let the Whole Thundering World Come Home, received as a gift a few weeks ago, a story of survival, which has galvanized me into writing about my experience, because, added to all of these other small, unassuming, important books, it helped me to see how much we need these distilled, unflinching accounts of facing illness and possibly death—our own or a loved one’s—and how there are no rules for the writing of these. Each is as unique as the experiences being recounted.

Death and dying are the only profoundly personal, individual human experience we are ALL certain to share; they are the ultimate oxymoron—the universal one-off.

I haven’t resolved the conundrum of eternity, and I don’t think I’m meant to. I no longer search for absolutes. The physicist and man of letters, Alan Lightman, speaks of a universe, a world in which all composite things, including humans and stars, eventually disintegrate and return to their component parts. Based simply on my observations of the things we build, of the natural world that still surrounds us, and of our own aging and return to the earth, this seems a good place to anchor my thinking about beginnings and endings.

What I also know now, for certain, is how much we simply need each other, to get through the tough days, the suffering and the fears; and I know that it is enough. I have received a life-threatening, ominous diagnosis, and yet I have never felt so loved, so surrounded and so grateful to be alive. A spirit, an energy connects me to others, and to life. I have always felt it, been aware of it moving through me, but never so clearly as now.

Holmes, Ashley B.; The Grieving Tree; The Royal Hospitals; http://www.artuk.org/artworks/the-grieving-tree-209739

 

 

 

 

 

 

RECENT OBSERVATIONS FROM CHEMO BASECAMP: part 1

Base Camp, Mount Everest

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

 

 

YEARS OF MAGICAL THINKING

Kissell, Natasha; Landscape; St George’s Hospital; http://www.artuk.org/artworks/landscape-87465

Part of the “This is the Moment” series

August 27th

Many years ago, when my boys were in grade school, I used to trek down the street every weekday morning with them to the corner where they caught the school bus. This was the late 80’s and also the 90’s (because Christian is 8 years younger than his twin brothers), and most of the parents congregating on the street corner—many with younger children in tow—were mothers.

For a brief period during that time, the bus stop was a 10-minute walk away, and that’s what put me in contact with Mary, who lived just a couple of houses from the spot where we gathered.

I never got to know Mary well. The broad street her family lived on was busy: there was a high school within sight of her house, which meant lots of school buses and city bus stops and cars. Just behind and east of the high school was—and still is— an elementary school and Catholic church.

Mary was fair-haired, as were her three young children, and pretty, but the lingering image of her, that mental snapshot that remains years later, is of how bedraggled she and her children always were. She couldn’t have been much more than thirty, but she also always looked as though she hadn’t had a minute to run a brush through her thick hair in months, nor her children’s mop tops either. Her eldest, a girl, wearing thick bangs cut straight across her forehead with what could have been gardening shears, by the look of them, was there to take the bus to school, but her younger brothers, little more than a year apart, stayed close to their mum while they poked and teased each other and hung onto Mary’s clothes.

Her husband, who was involved in the local soccer association, was a good twenty years older, short, pot-bellied and a chain smoker. He was as blond and dishevelled as his children. The whole family spoke in British accented English.

I wish I could remember what part of England they were from or what brought them to Montreal. I wish I had made an effort to talk more to Mary, even for only a few minutes each morning. She must have been isolated in that house with her young children, far from home.

But there was one day, on that same street corner, when we spoke just long enough for, of all things, the subject of sky charts to come up. Mary was interested in astrology. Would I like for her to do my sky chart? It was such an unexpected question that I said Sure! Why not? even though I’ve always seen the Zodiac and all things astrological as mysterious and fun and…a fiction. And so, I gave her the date, place and hour of my birth and that was that.

Years went by and I forgot all about it. I didn’t run into Mary and her brood any more. Maybe the bus stops had been changed again; I no longer remember. And then one day, as I was walking to the post office, I saw Mary. None of the details are clear, but I think she looked more settled, more solid. She was alone, and that makes me suppose that her boys were now in school as well. She greeted me, but you could tell that she had somewhere to go. She seemed to have found herself.

And then, just as we were parting ways, she said to me: “I never did give you your sky chart, did I?”. And I just answered something like: “Oh, gee, I’d forgotten about that, it doesn’t matter.”

Me, age 2

She stopped then, stretched her arm towards me and said: “What HAPPENED to you in childhood?”, with such intensity that she stunned me. We were still just strangers.

What did she “know”? What had she “seen”? I just remember answering something like: “Well…there were difficult times for my sisters and me…”.

It was such an unexpected turn. Who was this woman and what was this insight she possessed? But she simply looked at me with kindness and said: “Well, I’m sorry about that, but I wanted to let you know that you’ll live to a very happy old age.”

I don’t remember ever speaking to Mary again, and within a few years, I think she and her family had moved on.

This was her gift to me, on that day. She had seen something, seen deep pain, and had given me those soothing words: […] I wanted to let you know that you’ll live to a very happy old age.”

I haven’t written this because I felt like telling a story. I’m sharing this because, astonishingly, I held onto those words for all of these years. I believed Mary. Her words burrowed their way into the networks and channels of my body and mind with the power of an oath, a promise, a guarantee. Mary’s words were such a comfort to me, with their magic that restored an unexpected balance in my life. That made me feel blessed. Protected by some benevolent force…

Dahl, Johan Christian Clausen; Mother and Child by the Sea; The Barber Institute of Fine Arts; http://www.artuk.org/artworks/mother-and-child-by-the-sea-33070

Mary’s words are at the heart of a kind of magical thinking that has comforted me in dark moments for decades and given me a soft place to escape into when the pain of living has brought me close to my limits. It has nurtured an already natural tendency in me to put stock in the overwhelming grandeur of life.

And it made it harder, these past 5 years, to recognize that cancer was growing inside me. At some level, the mundane facts of my cancer were incompatible with my deepest sense of who I am. I couldn’t relinquish the magic.

At the CHUM last week, my last chemo cocktails of that day

 

 

 

 

 

FINDING A PLACE TO STAND

Part of the “This is the Moment” series

August 16th

When I sit down to write for This is the Moment, I include the date, and it’s a shock every time. Partly because the summer is entering its last month and I haven’t really experienced it. It escaped my grasp. I’ve been tied to this new house and its needs, and also lost within its walls, away from the oppressive heat, while part of me has been floating, hovering above my life like a lost spirit.

It’s a strange feeling to be made so captive by reality—separation, relocation and cancer—that there seems to be nothing to settle upon, nowhere to gain purchase. I won’t be restarting my teaching contracts, or zipping around in my shiny green Mazda 2 nearly as much as is usual for me. I’ll mostly be shuttling by train and metro between islands named CHUM CLINICS, CHEMOTHERAPY and CLSC. Those spaces on the calendar will be marked with the biggest X’s and dominate the landscape.

But most of my living can’t happen there. I haven’t quite figured out what my time there will be and what life elements I’ll find. For the most part, the CHUM is a state-of-the-art space that climbs up into Montreal’s skyline and offers almost everyone within its windowed areas the joy of looking out at the bright, beautiful city and the great river that’s wrapped around it. But it’s also the space where medicine is practiced with ferocious intensity and intention.

The view from a waiting room at the CHUM (Centre Hospitalier de l’université de Montréal)

When I begin chemo—which should happen on August 22nd—I’ll be in untested waters, for me that is. I’ve accompanied both my father and mother through theirs (events that occurred 25 years apart), and it has left its imprint, a shadow on me. As I watched the stellar nurses puncture my parents’ veins at each session, sending the poisons with inhuman names into their veins (the word Carboplatin still makes me shudder), I felt revulsion, for sure: I think that it’s the first, overwhelming and sensible reaction to have. But as I watched them and the other patients in their own recliners lean into the experience, the stakes became more easily visible. These were areas where sick but healthy people (the dichotomy that cancer creates, in which the medical teams treating you refer to you as both healthy and cancerous is one of the most perplexing to patients—it certainly was for my mum and has been so far, for me) have learned to live with their fear of needles, of pain, of indignity, of losing their hair, of losing their vitality, of losing their ability to eat, taste, walk, laugh, experience pleasure and engage with the world; of losing all of their beauty, and their grip on life as they’ve previously known it, and of ever having a carefree moment again…and yet resolutely accept what lies ahead.

There’s such strength in resignation and forbearance. Cancer isn’t all, or only, about fighting. I think it’s also about making peace.

 You can beat this!

Fight like hell!

Kick the crap out of it!

A positive attitude is so important!

Go at it with guns a-blazing!

 I’ve been cheered on already by so many people (again, thank you, thank you) with chants like these. I understand them. I do. But I don’t know if I’m capable of manufacturing this state of mind.

When I think of what’s happening insidiously inside me, I feel compassion for my body. Poor thing. It’s struggling with this tumour that has sent emissaries out into my bloodstream and has been doing so very quietly for a long time, exacting very little from me so far. Fighting this cancer, waging war on it, fills me with images of damage and destruction; of laying waste to parts of me that are my body. This isn’t where my mind wants to go.

Just in time, my sister Marie arrived in town 4 days ago (she’s on a flight home to Vancouver as I write) supercharged with encouraging energy and bearing gifts from her very recent trip to Morocco.

I felt shy opening them because we’ve agreed not to exchange presents any more. But she knew what she was doing.

Gifts from my sister Marie

Everything I opened was made in Morocco, and was a beautiful bright pink. Among the bounty, there was a necklace and leather bracelet which carry the symbol of the Hamsa or Hand of Fatima, a multicultural, multi-faith symbol of protection, and several other fuscia gifts. Marie explained to me that in Morocco, pink is a symbol of healing.

I immediately put on the Hand of Fatima necklace and bracelet, placed the cushion on my bed, and set the scarf and pens right next to it, in the hope, I think, that the message they carried would linger in my room, and settle in a quiet place in my psyche.

By an eerie coincidence, and not at all in character, the colour I chose for my bedroom in our new home is unapologetic pink. Not a speck of pink had ever graced a single space in any of my previous homes.

Love, protection and healing.

It’s among these that I choose to stand.

My room in Hudson

I’d never used the word destiny before. What is it? A coagulation of your hunger to find a path, to find a place, to set one foot after another. To come inside out: to show your guts, everything you are made of.

            If this was true about destiny, cancer was my ally on that course. It pushed me out beyond any boundary I had known. It threw me right into the pool of fear, stripped me down to animal survival. Could I face that polarity of life and death and find another place to stand?”

This is one of my favourite passages from a book by Natalie Goldberg, Let the Whole Thundering World Come Home, A Memoir. Also given to me very recently by my wonderful friend Gail.

 

 

A GOLDEN, FLUID, PERFECT PLACE TO BE

Part of the “This is the Moment” series

July 28th, 2018

Yesterday was an uneven day, and not the first one I’ve experience of late. As my emotional energy waxes and wanes unpredictably, so does my morale. We’re not talking about dramatic mood swings, but of something more interior. One minute, I’m all there, fully in the moment, and the next, I’m inside the bubble of darkness that is my cancer.

That’s how things are right now, and though it seems obvious that it should be so, it has also ambushed me.

Perhaps the darkness is always there for all of us —even the most Zen; even the most spiritually enlightened; even the most insouciant. No amount of meditation and yoga can eliminate the fear, the sadness, the pain that also make us who we are.

Johnstone, John; Entering an Innocent Room; Arts Council Collection; http://www.artuk.org/artworks/entering-an-innocent-room-63670

Recently though, the bubbles of despondency have caught me unprepared because up to now (I’m so fortunate) into almost every day, so many seeds of love, presence and joy have been sown, expertly, by my sons and many others who care about me and whom I love, that I was blinded. My two best friends in the world came to visit last Wednesday, arriving at 2 pm and staying till 10 pm (I’d forgotten just how easy it is for us to lose ourselves in companionship); Thursday, my husband came to spend the middle part of the day exploring my new neighbourhood with me; and Friday, Christian organized a fourth D&D quest with Simon and their (and now my) friends—a day that began just after lunch and ended well past 10:30 pm.

And yet still, pressed into each of those days were moments of concentrated anguish that brought me to tears and to the edge of something vast and inconsolable. So far, I’ve rescued myself from that fall.

There’s a kind of weeping that demands all of the body’s energy: it hits without warning and quickly swells, and there you are, your heart pounding, your throat choked and your chest under such a terrible pressure that it’s all you can do not to surrender to its anchor-like pull and just gasp and heave and sob and let the snot run and clog your breathing.

A few times, I’ve let some tears slide down my cheeks, let them flow just a little, in private and as quietly as possible. They often come at day’s end, at bedtime, and to me, they’re a little like the flares that sinking ships send up into the sky. They’re an acknowledgement of a vast and terrible peril, and of the sense of isolation that is so often its concomitant. They’re the expression of fact—a reluctant S.O.S.

The last time we were at the surgeon’s office, my son Simon asked her if she could perhaps prescribe a sedative for me; something to ward off the stress hormones that make everything worse; something that would help me to sleep. His presence of mind has given me the reassurance of a good night’s sleep, no matter the shadow of what lies ahead.

I haven’t let myself cry for very long yet because of its ill effects on me: my wobbly heart, my flagging hope, the lowering of my clenched fists. Right now, crying makes me feel fragile. Shaken. Despondent. It amplifies the wrong things. It makes nothing better. It releases little.

It’s too soon for crying. There’s so much to do, so much ahead. There’s living as long as possible. There’s trying to survive as long as possible. Learning and accepting the difference between the two is what’s been sending me into the darkness of the cancer bubble.

On the day that I had my first and only colonoscopy, just as the procedure was to begin, the gastroenterologist said to me that in a few seconds, I would feel the effects of a sedative the nurse was preparing to inject into my I.V. catheter and sure enough, almost instantly, it felt like a warm, liquid blanket was slowly covering me, and I was completely at peace, despite what my eyes could see on the monitor as the endoscope entered my body.

It was the most extraordinary sensation. Not in the least euphoric but more like being drawn into your mother’s arms as a small child and held there in the warmth, with the feeling that no harm can ever come to you. A golden, fluid, perfect place to be. I remember noting somewhere in the paperwork I was given after the procedure, along with the results, that I had just experienced my first dose of fentanyl (its dangers are now very clear to me).

It’s been a tough week. Facing my new reality is proving to be harsher than I thought. But in the midst of this confusion, on a shaky day, I experienced a moment of grace that began with the appearance of a letter in the mailbox, in the form of a striking, square envelope, with edges striped red and white—the telltale markings of air mail (such a rare occurrence). It sits propped up next to me as I write: it doesn’t feel like those thin blue air mail envelopes we used when I was a young. Instead, its paper is thick.

Leslie and Sue’s card

When I first handled it, I could also feel the thickness of the card inside. With no return address anywhere on its surface, and my address written in bold, block letters on the front, I hesitated, but eventually decided that this must be from Leslie Stuart Tate, a man I’ve never met in person, but who is most certainly one of the kindest human beings I know, and my very dear friend.

As soon as I’d opened it, I knew that I was right. Greeting me was the wonderful, whimsical image of an ailing pug on the front of the card (his wee face still speaks to me), but really, the magic was inside. There was the marvellous personality and expressivity of the handwriting of a man with whom I’ve only ever corresponded on line, explaining to me that he had waited to write to me till he was sure I was at my new house (there is so much of him in his handwriting, I’ve found myself running my fingers gently over the straggly and bold cursive letters).

In the hand of my friend Leslie

And there was the matter-of-fact way in which, right from the first sentence, he fell into an account of Mr. Trump’s recent visit to England, some much happier news concerning his wife Sue’s family, and a recent film he much enjoyed.

Also inside the envelope was a very small book made of thick, unbleached paper, and featuring a most arresting cover image by artist Stanley Donwood. At only 34 pages, in a generous font, it’s actually a beautifully packaged essay by Robert Macfarlane—it is a melding of form and substance—titled The Gifts of Reading.

 This lovely piece of writing, by an author that I did not know, cast a spell over me. Leslie’s choice was so deliberate and so perfect that holding it in my hands and reading its first few lines transformed the moment and, I think, the afternoon. The Gifts of Writing is a meditation on the meaning of life and the ways we choose to give. It’s about the wonder and mystery of books, and what it can mean when they are shared, over and over. It’s about how books are repositories not only of wisdom and creativity, but also of a way of life, a way of being in the world, a way of loving and a way of leaving the world.

Leslie’s gift helped me to feel that he understood what my days of battling the darkness might be like, and he reminded me of the vastness of riches that surround me: a happy home, beloved sons, a beautiful extended family, friends from everywhere I’ve walked in life, the writing I do and share, the reading…the giving and receiving.

The warmest of feelings spread through me, amplified by the fact that both he and his wife Sue had signed the card, right after the words: We love you.

I see now that a different sort of bubble had formed around me: a golden, perfect place to be, pushing out the darkness.

I realized as I sat quietly, holding the book in my hands as one would a talisman, that I felt this same glow the day I received my scan results from the colorectal surgeon at the CHUM: “On a eu des surprises, et ce ne sont pas de bonnes surprises.” (translated : « There were surprises, and they’re not good surprises”).

I don’t expect to ever receive worse news in my life (please, may it be so for the sake of all those I love so much), and yet that day, with Simon and Jeremy and Christian and his love, Vickie, beside me at the hospital, at the coffee shop where we met afterwards, on the train in which we travelled home together (Jeremy getting off just a few stops later), and for the rest of that evening, the force of their love, the glow of it, the warmth of it, the effect of pure saturation that it had on me…it’s what pulled me back from the awfulness of that day. From the shadow.

One truth eclipsing another:

You will die far too soon…

You are among the luckiest people in the world for having so many gifts showered upon you.

McGinn, Martin; Well; Rugby Art Gallery and Museum Art Collections; http://www.artuk.org/artworks/well-54817

 

NOTE: Robert Macfarlane’s essay is also available online, in the Paris Review, with a slightly different title: “The Gifts of Reading Are Many- Robert Macfarlane reflects on what you give when you give a book”.