THIS IS NOT REALISM

Part of the THIS IS THE MOMENT” series

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

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

 

 

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.