Though it feels like I have to just hang in there through chemo, the fact is that I can’t and shouldn’t exist in some kind of holding pattern. I have to go and live as fully as I can.
This may be a peak. How I feel right now could be the best I’ll ever feel again…
I can’t say—I don’t know.
What I know is that there’s the possibility of so much more pain; of pain so pervasive that life narrows, and you enter a tunnel and for a while, it’s as though that tunnel has no end.
Someone I know, care about and identify with effortlessly, is suffering in this way right now. Or she was all day and night yesterday, when I could think of nothing else. I won’t name her. Her torment is as real as it is private.
The cause of her suffering is the cancer that has invaded her bones. Yesterday, she reached the point where her morphine no longer made a difference. I wasn’t with her, but I know that she is tough, and willful, and that her agony had to have been…unspeakable.
Knowing that someone is suffering the way she was, and has been for days, turned me inside out. Lying in my bed last night, I felt connected to her through invisible fibres that functioned like nerve endings.
Those who love her are all tethered to her pain, and every thought/prayer sent toward her also pulls on that part of the tether that is connected to us.
It reminds me: do not take a second of wellbeing for granted.
There is suffering everywhere—cancer, disease, are not its only claim—but this pain has a face, an identity known to me and everyone close to her; and that’s why it’s so easily sensed by all of us.
What can I do? What should any of us do?
Be mindful of that suffering. Don’t dare push it away when that connection is painful. Share it in spirit. Be present to it. Ache for the one suffering. Bear witness to it. Send love, send grace…
And then yell and howl publicly in proxy pain, till the palliative medical team gets it right. Till the loved one’s nerve endings quiet.
There IS a cessation to suffering. At the end of that tunnel is light and deliverance.
It’s a cold Sunday morning and I’m sitting in what’s become “my spot”, that is, at the dining room table that looks out onto the back yard. It’s beside the sliding door, and I favour it because regularly enough, it’s here that a warm beam of sunlight enters the house, and for an hour or more, I have not only the light, but its rays upon me.
I’m able to spend lengthy stretches of time here. When Simon and Christian are off at work, it becomes a quiet, open space. There’s just me and my laptop, which, given the circumstances of my life, is the door that I can throw wide open to the world—despite the side effects of chemo I’m dealing with on any given day—and enter it, travelling as far as I wish, messaging, writing to or chatting in real time with the people I know and love, but also, thrillingly, with those I have met through my sickness and my blog, leaving my body behind. What would my view of life be like without this aperture?
(Oh! I’ve just been interrupted by the song of blue jays up in the pine trees in our yard and I even spotted one. It’s the first bird cries I’ve heard in months. They’re not the sweetest species, but on this cold winter afternoon, their vitality’s welcome!)
As the weeks and months have passed, I’ve never been more aware of the importance of this screened device that I type on and use relentlessly to connect with what otherwise lies outside my reach. Winter has also placed walls between me and the world as surely as my cancer treatment has.
Twenty years ago, I would have been dependent on the telephone, that very narrow channel of communication. I could have exchanged in real time, certainly (though I would doubtlessly have left innumerable messages—it was the heyday of answering machines), but along such a thin line of human contact. Banter mostly. Voices filled with attempted cheerfulness, worry, love, concern and the mundane news of everyday life that would have been my interlocutors’. But never seeing the faces that might have betrayed much more—a richness of pain and love.
On my laptop, I give and receive as lightly, as impulsively, as much as I choose or as much as I’m invited to offer. Internet is my means of travelling, and this year especially, it has taken me beyond what I thought possible. I think it’s saving me from the despair and depression that I might have fallen into.
Writing, especially, has come to my rescue. While I’m caught up in it, there is always an exchange happening between my thoughts, and you. Without you, writing would quickly lose its meaning. I’m sure of it. I’m not a diarist. I write pages that may or may not be read by you but are nevertheless meant for you…whoever you are. You were and always will be the people I know and love, and also someone I know less well but would like to know better. But I’ve also come to realize that you may be someone I just met on one of the myriad, tiny bridges of words built on my blog. I barely know you, and yet you have left behind words of appreciation and mostly, a piece of yourself.
Wednesday, February 6th, 2019
Like so many chemo patients, I’m afflicted with shivers. They come and go in waves with a constancy that assures that they’re always a factor in my daily life.
It isn’t a coincidence that the sunny corner where I sit and write is directly in front of an electric heating panel. This is one way I’ve found to postpone the inevitable—at least from fall to spring. It’s as though any degree of cold in the ambient air finds me. It works its way into my feet despite the fact that I wear huge, thick socks bought at Chapters (the fuzzy knee-high ones) and l’Équipeur (the thermal ones).
This morning, I’m still in my soft pajamas and super-socks but, sensing this wouldn’t be enough, I’m also wearing a large, loose Carraigdonn 100% merino wool sweater, made in Ireland (I checked the label), that’s my mum’s. A previous chemo patient herself, she came to my rescue with it last fall, knowing it would be needed. I thank the sheep who contributed their miracle, all-weather wool to it. It’s like putting on a heated woollen tent (merci Maman xo).
Shivering reminds me that my body is under siege and that it’s having to expend energy fighting on many fronts at the same time, the chemo killing parts of me while all of my body’s systems kick in to repair, restore and remove the wreckage. It reminds me of my frailty and vulnerability; how quickly my battery loses its charge. It makes me feel old and compromised.
My shivering is a visible sign that my sons pick up quick as lightening, filling the den with blankets and covering me up while we watch Netflix together. Simon also mastered the use of the slow-combustion Napoleon stove that’s in the den (which is still allowed in Hudson), where with a wood fire only, he has succeeded several times in raising the room temperature to a thermonuclear 30 degrees Celsius. The irony is that once I’m under those blankets and all heated up, it’s almost impossible for me to get up and go to bed…such is the shock of re-entering other, cooler parts of the house.
But the shivers and my circumscribed life with chemo have allowed me to luxuriate in the most delicious and self-indulgent ritual: the late morning bath. You see, showering is rough. No matter how hot I set the water, or how warm the bathroom is when I enter it, I can barely bring myself to pull open the shower curtain and step out to face the wall of cooler air that greets me once I’m done.
But a bath…Ahhh…I fill it right to the overflow opening, lie down in the hot water and marinate till every calorie of available heat has migrated into my body. This ritual came about as a result of the 5FU infuser that I wear from Wednesday chemo to Friday afternoon. Bathing was one way that I managed to wash without getting the infuser or the port-a-cath in my upper chest wet. The fact that I was as warm as a foetus while bathing was a sweet discovery. Until now, I don’t think I had ever taken a late morning bath. Lying there, I’m reminded how alien my life has become; and then I try to savour every sensual moment of the experience. I’m sick. I’m in treatment. My present life is almost unrecognizable to me. And yet, to be in the very warm water—in a quiet, safe and peaceful space where I can close my eyes and simply breathe, or else let my mind wander and start writing things in my head, or face my own, private fears and truths—is a very fortunate oasis, but also an indication of my life’s contraction.
When we first moved into this new house in Hudson, we—Simon, Christian and I—brought roughly a hundred “smallish” boxes of books, which we stored in the basement while we settled in. But the idea, The Plan, was always that we would turn the living room into a library—a dedicated reading room—and merge our collections.
It meant building ten or more floor to ceiling IKEA bookcases (Simon’s doing, with his friend Isabelle), and then systematically emptying every box, sorting through their contents and placing the books in some kind of order (we settled for detective and mystery in one corner and everything else—fiction and non-fiction—together, alphabetically, by author, along the main wall). Just days before Christmas, the shelves of our reading room were finally almost fully garnished.
It’s a beautiful room, and our favourite. It’s the room that we all imagined when we spoke of moving. With very few exceptions—one being all family photos and paintings, but especially photos of my grandchildren—books are our most beloved possessions. I’m not exaggerating when I say that books, in ways too numerous to count, have made us, and provided us with a third common language.
Since my “liberation” from normal life and work, I’ve caught up considerably in the reading department, mixing novels and non-fiction. Reading’s been a great consolation—or should I say compensation? But the shadow of chemo has reached this part of my life as well, as once again, good ol’ 5FU, the chemo drug that seems to have it in for me, is affecting my vision by drowning my eyes with defective tears, then drying them out and irritating my corneas, to the point where the headlights of cars at night appear to be coming at me like quasars, and even in daylight, everything I try to read (including this laptop screen) is blurry. And despite the assortment of drops I use, my vision seems to be getting worse.
I won’t give up reading, even if I have to use a magnifying glass. Books are other worlds, other people, other voices, other’s dreams, other’s stories. Book are truth. Books are a shelter and an escape from our own pain, even if only by leading us into the suffering of others. Books are joy, and lightheartedness. They are wisdom. They are the repositories of billions of word bridges to each other.
Having time to read during my life in treatment gives me solace. I won’t give up books.
Not too long ago, as I was thinking of this piece and admiring the lovely library right here, next to where I write, I realized that there are still so many books on the white shelves that I haven’t read. Some come from Simon and Christian, but many are books I bought myself, after seeing a great review or wanting to read more of a writer I’ve just discovered and loved. So, I acquired them, and they are my trove. Our trove. I’m not sure how many they number in total, but there must certainly be fifty or more of them…perhaps as many as a hundred or more…
The question that struck me and that has haunted me since is: will I have time to read them all? Amongst all of the books at the library and those being published every day, those we have here represent such a small proportion. But it’s possible that I will leave many of them unread. Counting down my days in this way is dark, I know, and yet…and yet there’s also something immensely comforting and even subversive about measuring my lifespan by “books read”. As though I needed the motivation. [insert my smiling face here]
I got my second scan results, once again, through my sister-in-law who is a radiologist. She received my email at the beginning of her vacation (she doesn’t—can’t—take nearly enough time off), and promised to let me know how things looked as soon as she got back. When she did, I received a very brief email stating that things were “stable”: no new lesions, no growth of existing tumours. STABLE. I immediately replied, asking if that meant that nothing had shrunk, she replied again: yes, stable.
After processing her words a bit longer, I felt myself sliding down into a gutter of sadness. Of hopelessness. It was so precipitous, it was almost like the sweeping downward movement of a rollercoaster.
So much for my bravado. My morale is wobbly and vulnerable. My mind was filled with a frantic salad of thoughts such as:
– “Stable” means the drugs are (already!) no longer having the desired effect on the tumours/
– “Stable” means the beginning of the end, because if the tumours aren’t shrinking anymore, then the second we stop treatment, they’ll spread everywhere/
– “Stable” means the cancer has adapted; when I got the first scan results that were so favourable, there was a brief period when I thought: “Maybe I’m one of those people who will be “cured”, against all odds, of their stage 4 cancer. But I’m not./
– Maybe I’ll be dead in a year…perhaps two years…I won’t be part of the future.
I was hurtling down a steep incline, having lost sight of all of the answers to the question: What am I afraid of?
Like mountain climbing when, after a near catastrophic fall, you struggle back up to where you set your carabiner, and you see that you’ve moved well beyond chemo base camp, and that the stakes now feel even greater.
Then I thought to go online and just look at what the American Cancer Society has to say on the matter. I found what I was looking for under the heading “Managing Cancer as a Chronic Illness”. I read through the sections several times and each time, it was like pushing my mind’s refresh button. Each time, things were slightly altered.
I think that I’ve arrived at a crucial place: I must now accept that stage 4 cancer (barring a medical miracle) is chronic cancer—if you’re lucky. If it doesn’t spread like wildfire. A cancer that you can live with for a while (…to be determined). And living with chronic cancer means several things, including the fact that the life that you had before you were diagnosed is GONE. It will not be resurrected. GONE. Got that?
This was so from day one but I hadn’t yet understood and absorbed it.
Amongst all of the daydreams that sweep things back and forth in my mind was this notion that perhaps, if I was very, very lucky, perhaps one day this life I have right now would all be gone and in its place, my old life—the one that contained my work, my physical strength and stamina, my greater independence, my ability to travel, and the plans I shared with my sons about the future—would return. That I would have a life after cancer.
I know differently now, and should have sooner, except that, apparently, my mind relinquishes its patterns reluctantly, and holds onto its schemas the way very small children cling to their parents. I live and hope to keep living with cancer. That’s my new narrative.
Time is breaking down my resistances, and I can now see that I will be able to live with cancer for many months and, perhaps, years. This means a life lived close to hospitals, to medical care, to drugs and treatments. Regular medical intervention and supervision of my cancer and health, till I die. Freedom within those parameters.
This all coincided with bad news we received. Heartbreaking news, concerning a close member of our extended family; someone we haven’t known all that long but love deeply, who, at 53 years of age, has also been diagnosed with stage 4 cancer of a different type, but who had the news thrown at her in a manner I consider violent and without compassion.
These coinciding events—my scans and her scans—sent me reeling, creating such a mournful feeling in me. I have lived seven more years than she. How can I not feel rent by this news?
It seems as though there will always be broken pieces to pick up and make room for in the mosaic of my life.
Yesterday, I was back at the CHUM for my routine pre-chemo tests, and spent a while with my oncologist, Dr. Aubin (whom I’ve mentioned before), who heads the clinical trial I’m participating in. I was waiting to see her before writing any of this to you.
She greeted me with a smile, and a cold, which she thinks she caught during her flight back from San Francisco where she and her team were presenting their work and findings so far. She was full of enthusiasm about the outlook of research in her field.
She examined me, and then we discussed my recent scan results, and when I mentioned that I was disappointed, she looked at me and said no, no, that she was very happy with the results; that the cancer is being controlled and that there was, in fact some modest shrinkage, and that all was well. That these sorts of fluctuations were to be expected. And she said it all with a broad smile, so I believed her, and told her that I have finally understood that my disease is chronic. That I know what this means. And she nodded, and smiled.
Before we parted, she said to me that working in oncology is a real challenge, but that patients like me made things much brighter.
It’s hard not to feel buoyed by such words, and so I shall try to knock some sense into myself and repeat to myself that the future is unwritten, and I shall try to narrow the swings of the pendulum to which my hope is tethered.
I’m back at the CHUM today, after an almost month long hiatus from chemo. It was an unplanned winter break. It felt a little like playing hooky, like an unexpected escape, like getting away with something.
But clinical trials don’t let you off the hook for very long, and today, it’s back to a full dose of reality: pre-chemo blood tests, a visit with Dr. Aubin, the chief oncologist involved in this trial (a young, petite, brilliant woman who has been wonderful with me), and SURPRISE !, my second CT Scan (the study requires a scan every 8 weeks).
I didn’t know this was on today’s calendar. This serious return to reality is unwelcome.
I should feel optimistic; everything so far has indicated that my body’s response to my treatments is positive, but I would have liked to coast on that feeling a while longer. There’s a whisper inside my head cautioning me to prepare for the possibility of disappointment.
What would disappoint me? I have to think about that.
(I have lots of time to do so: 4 hours in fact, because it’s 10 am, I’m done with Dr. Aubin and my scan is scheduled at 2 pm)
—If my tumours have recovered and even grown, I will…I will…
I can’t complete that thought.
It belongs in the Do-not-go-there-until-you-have-to category. The place of the unwritten future. May it remain banished there.
—If my tumours have shrunk a lot less than on the first scan?
Yes, this would definitely disappoint me, but it seems quite plausible, doesn’t it? My body has been adapting to the poisonous drugs invading it; surely the tumours are pursuing their own survival strategies?
When you have cancer, things get real very quickly.
The holiday is over.
But you know what? Almost 5 months into chemo, I’m not frightened the way I was before it started. I live more comfortably within my life’s new landscape. Forward momentum means very little to me now.
What’s just bubbled up from my memory are images—like footage—of all of those summers of my childhood, when we would pile into the car with a trunk full of suitcases, and a cooler full of food, and off we’d go, on vacation, usually eastward, spending hours and days in the car, my sisters and I seated in the back seat, sometimes with our grandmother; my parents in the front with one of their daughters wedged between them if grand-maman was aboard, watching cars whiz past us, in both directions of the Trans-Canada highway, and the scenery along with them. Whoosh! Whoosh!
That’s how my life has felt, for the last decade at least: me speeding through the days, and rarely in the driver’s seat, constantly monitoring the passage of time and feeling it running out…
Cancer brings the stillness of a dropped anchor.
What struck me yesterday in Radiology was how sick people were. So many were rolled into the CT-Scan and MRI area in gurneys, that I lost count. One older man could barely stand, but still tried to avoid using the wheelchair provided for him to move about. He sat very still while having a catheter installed in his arm. He couldn’t speak, just the faintest whisper was possible for him, because there was some wound or incision in his neck. But every single one of his breaths was audible as he shuffled to the room he was called to.
I remember my first scans well. On that day last July, I was to have the first of my two diagnostic scans: the MRI and the CT-Scan—those that ultimately revealed the advanced stage of my cancer. I was still new to the stages of malignancy, to the CHUM, and to the hijacking of my life by a disease. On that summer day, waiting seated along that same wall where I found myself again just yesterday, with a good half-dozen other patients, I felt and looked like the newbie. I felt younger, and vibrant. I could still smile and act relaxed. But right next to me was a woman at the other end of the line. She made eye contact with me immediately and I could see how much she wanted to talk. She may have been only 5 or 6 years older than me but she was ancient by the standards of health. Her pale blue hospital robe—just like the ones the rest of us were wearing—accentuated her pallor and that unmistakable yellow-beige “chemo” complexion that’s so common to patients who’ve been battling cancer for a long time. Her hair was short and patchy and her eye lashes and brows were virtually gone. But she turned to me and smiled an exhausted smile, and though I’ve forgotten her exact words, I remember that she was three years into her battle to survive breast cancer that had travelled to her bones and was now in her brain. I remember that she touched the port-a-cath, that visible square bump under the skin of her upper-right chest—which is just like the one I now have implanted in me—and said: “This is what you want, it’s fantastic.” She was right. It is.
I’ve thought of her often. I wonder whether she’s still fighting to survive, five months later, or whether her body has reached the point of exhaustion. I think about her will to live, about her gentle smile, and about the distance between us and how much of it is delusion. How many patients like her are there? Where does their strength and determination come from? Their willingness to be stripped of almost everything but their pulse?
You enter the area, you walk into a small room and lock the door, because you have to get undressed. In an impressive, succinct combination of images, words, and alphabetical order, you follow the guidelines written out for you on a poster hanging on the wall. Instructions A, E and F pertained to my situation. When you leave that change room, you’ve left behind your distinctiveness, your spark, your colour, and most of your joy, because you’ve become indistinguishable from everyone else. The hierarchy of illnesses is almost invisible. Everyone is just a patient.
No one could stand this for very long. We all need the recognition and validation of others. We need to experience agency in our lives. We require the dignity that comes with being able to speak for ourselves, to be treated as individual, precious humans who also express themselves by means of their clothing, their demeanor and their social interaction. Sometimes, just the look in our eyes is enough. Some of us are positively heroic in our endurance of pain and our astonishing resolve. Some of us are sad, some angry, some terrified and some, all of the above.
Illness and injury reveal us to ourselves. And to our loved ones, I think.
Yesterday afternoon, I couldn’t wait for my CT Scan to be done. I lay there, on the mobile slab inside the big white ring that vibrates and hums and lights up, with my arms above my head and the catheter placed uncomfortably right where my left arm bends, and held and released my breath as prompted by a disembodied voice, and felt the hot, fluttery rush of iodine as it entered my bloodstream and quickly made it all the way to my bladder. And then it was over. My catheter was removed, I gathered my things, re-entered the change room and recreated the person I am by dressing and leaving Radiology, walking down the long, labyrinthine hallways of the CHUM, till I reached Champ-de-Mars metro station, blending in with everyone. Similar, but Me nonetheless—and free.
2019 will be here tomorrow. Am I happy to turn the page on 2018?
It’s a question that’s come up many times these past few weeks and though the people asking it actually pause and wait to see how I’ll answer, for most of them, it’s really just a statement. There’s no question mark. Good riddance, is what they mean.
Despite the obvious life-changing events of 2018 that dismantled my own existence and transformed it into both nightmare and epiphany, I’m never sure that turning the page on a year is cause for celebration.
There’s something about taking even a second of life for granted that prevents me from wishing time away, but in practice, just like everyone else, my mindfulness is set adrift by the slightest wind or whim.
That’s what’s brought me to this keyboard today.
I should be at the CHUM right now. I was originally scheduled for my bi-weekly pre-chemo tests today, followed by 5-6 hours of chemo on Wednesday. But I’m not going. That’s my decision, made after persuasive prompting from Simon, and a deep, deep fatigue and weariness that has settled in me this December. When Simon and I realized that my next round would require me to travel to the CHUM on New Year’s Eve and then again on the day after New Year’s, we instantly agreed that this mustn’t happen, and that I should ask that my chemo be postponed to next week.
A one week reprieve—that’s all I wanted. But it feels like so much more. My hands aren’t healing enough between bi-weekly rounds of treatment, and so they always hurt; my energy levels barely make it to 7 out of 10 before I’m back in treatment; my morale is being affected by the 14-day box I live in.
The season is icy and dark.
January 2nd, 2019
I had dinner out last night with my Mum, her partner Claude, two of his three grown children, and my sons, plus Anne, my daughter-in-law. We got together on the West Island, as is almost always the case, forcing Claude’s family—city folk—to come to the burbs, which they do, graciously, almost every time we invite them. We were at La Maison Verte, where the food was delicious and the company was, well, family.
I spent New Year’s evening sitting across from my mum and Claude. My mum was in good spirits, so the conversation flowed. They’re both 84 years old, and doing well, but these days, of course, it’s hard to talk about most things without the shadow of my cancer there, poised to dampen everything. Then, somewhat to my surprise, my mum began to talk about the grim reality of growing old, and about the fortitude and the grit required to deal with the hard parts of each and every day. I think she meant the incremental losses that are inescapable: aching joints that lessen mobility and make this winter’s ice even more of a nightmare; eyesight that is not as reliable as it once was and has required cataract surgeries; the lingering side effects of cancers, multiple treatments, illnesses and the surgeries that each of them has dealt with, and which have sapped their resilience.
It’s such an interesting perspective from where I sit. I couldn’t help thinking that if the miracle occurs, and my cancer retreats for a good long while, then I may then have the privilege of entering the daily survival zone my mum and Claude inhabit.
What came to mind next was something I’d been thinking about for a few days, something that turned time on its head in an entirely different way. Looking too far ahead, when you have stage 4 cancer, is fraught with painful traps.
I’ve been observing my beautiful grandchildren, Penelope and Graeme, who are like the ocean, or a primeval forest, or a clear night sky in summer, or grand, symphonic music, or perhaps all of these at once. They are sublime creations, impossibly wonderful, painfully lovable and constantly changing into something new, and more, and completely fascinating. And of course, I can’t help but wonder how long I will be able to know them and follow their metamorphosis into adulthood. And I thought of my own mother who has had the immense privilege of seeing her grandchildren—all five of them—reach the ages of thirty-five (three in all), thirty-two and twenty-seven. She knows who they are, who they love, what their professions are, and what sort of humans they have become. She carries this knowledge inside. They have added rings to her life—expansions of love and joy.
I’m not even sure I’ll see Penelope turn ten or Graeme turn eight. Who knows? That’s the thing. I don’t have those years secured away and well-lived in their company. But my mum does—and she has even been able to know and love her grandchildren’s children (once again, all five of them—so far). Another ring added, expanding her life.
One mistake that these thoughts twist me into making is to hold back from Penelope and Graeme, calibrating the expression of my love for them, so that my disappearance from their lives won’t cause them as much pain. Cancer treatment has kept me at the hospital an awful lot, lowered my energy and caused me to be less present anyway. I can’t run around and be the grand-maman that I was. Sometimes, I wonder if they feel the decay emanating from me. Why not recede, ever-so-subtly, from their lives?
These are awful, stupid, self-protecting thoughts that have strong roots, and persist. I struggle with them. I forget that love is a growing, expanding emotion.
On Christmas Eve, this theory of love was put to the test when I went to join the Daoust clan, my husband’s family, for our annual bash. This year witnessed the best attendance ever, and we were well over thirty people celebrating. But this was also the first Christmas after my separation from Sylvain–their blood. It says something about my Daoust family that this made no difference to them, and that they were very anxious to see me, as I had disappeared since late June.
I thought I would be skittish, but as the day and hour approached, I found myself so looking forward to seeing each and every one of them, and swore to myself that I would share this feeling every chance I got. And I did. It was so easy to smile and to linger in the long, warm, encircling embraces I was offered, so many of which qualified as bear hugs. My Daoust loved ones smiled and asked me concerned, pointed questions, and then moved on to just being there, all of us together.
I’ve reminded myself many times that I’ve known them since I was barely 17 years old; that I’ve been through so many happy events and tragic moments with them—that we’ve grown up and grown older together, and that our children are reaching further into the future…Ring after glorious ring.
On Christmas Eve and at New Year’s supper, there were so many smiles. There was such sincerity in what was said and how we touched each other.
There’s a lesson here for me. I’m an introverted person and this need of mine to retreat is not always the way to go. Saying “Here I am”, with open arms this year, allowed me to recognize the steadfast circle that surrounds me, to see all that it embraces and to understand just how limitless is its ability to expand.
Last night, sleep didn’t come to me as easily as usual. At 11:25 pm, I was still awake, lying in bed in a room illuminated only by the glow of a white winter night sky. In my previous life, this would have triggered anxious thoughts about how I was going to get through the next day of work on so little sleep, but now, it’s just what it is. There are no real consequences to such things because my days are more about not getting sick, not getting tired, and laying low, than about anything outward-looking.
So I lay there in the incomplete darkness and turned my gaze toward the window through the white phantom curtains. I took in the December evening, the quiet of the house and the square space of my room—ceiling, shadow furniture and the folds of the blankets keeping me warm. And I asked myself a question that must come to every chemo patient eventually: What is my purpose?
When, last July, I figured out that I wouldn’t be able to work, or do much else once treatment started, I felt an enormous relief. I felt lightened. It felt like I had been busy running toward the next class, the next meal, the next appointment or chore for so long, I didn’t want to run anymore. I may have been running away from a lot of things too.
So much of our lives is propelled by plans, fears, desires, ambitions, routines, hopes, commitments, dreams, obligations, pressures and momentum. But what happens when the road ahead requires passive compliance?
My life has the strangest shape. It has so few of the usual pieces that I’m stumped by it. I watch people come and go, and know that I’m outside their worlds. Every now and then, when conditions are just right, I can join them, and for a while, I feel part of the stream of life. But I’m still just a visitor these days.
Winter isn’t helping. It arrived mid-November with snow that stayed, and biting cold. It has pretty much immobilized me. Chemo and cold are incompatible. My body’s responses to the frigid temperature are odd and painful. Chemo has transformed winter into an alien thing which keeps me housebound much more than is good for me. And it’s only just beginning.
Lying in my bed last night, I found myself thinking about the other world, the one at the CHUM, where I experience short, intense bursts of purposeful, alternate life. There was nothing difficult about my treatment last Wednesday, but the day was long, as always, and my eyes wandered.
The cancer treatment centre of the CHUM is on the 15th floor: the top floor. Isn’t that wonderful? We step into the elevator and rise and rise above it all, and wait like (bald) eagles in our eyries. It’s a separate world made up of multiple large areas subdivided into “rooms”, or cubicles, where chemo is administered to hundreds of patients every week. Perhaps the most important difference between the CHUM and most of Montreal’s other hospitals is its brand-newness. Most cubicles, just like the waiting areas everywhere, have a floor to ceiling window-wall which offers not only a view of the eastern part of downtown Montreal, but also allows natural light to stream in, and patients and their families to look out and beyond the multiple wall plugs and pumps and infusion tubing.
Still, most of the large, comfy chairs in these areas have their backs to the window, which means that during the five to six hours that I’m there, there’s always the possibility of eye contact with other patients.
I’m surprised by everyone’s discretion. Some of us smile easily at each other, but conversations between patients are rare. Most of us are accompanied by family or friends for at least part of our stay. I’ve had seven treatments so far, and have never engaged in any kind of meaningful chat with a fellow chemo patient, once inside. Why is that? Well, in part, at least, it’s about the space available to us: we’re all settled in areas with walls and curtains that allow for a high degree of privacy, so interacting is a choice.
But those partitions also delimit the borders of our pain. No matter the brave or resigned face patients and their loved ones put on, from my chair, I observe so much more. Even though the discomfort of chemotherapy is easily bearable while in those chairs, you can sense pain everywhere.
For some, it’s the effect of repeated, long term assaults on their body and spirit. There’s an older man I’ve seen at blood tests and in treatment who suffers from thyroid cancer. I know this because I overheard him one Monday morning (pre-chemo tests day). His face is razor thin and his body is brittle. He has no more fat to sacrifice: cancer and treatment have devoured it all. He’s all angles and jutting bones, and his expression is mostly sour, impatient, and defiant. I wonder how much of him hurts with every movement of his body. His wife is always there with him, and I feel for her because hers is a thankless task. Then, last Wednesday, he and I found ourselves waiting to be called in for our treatment. And I looked at him, smiled, and said Bonjour! And he looked back and smiled Bonjour!
Well what do you know! This man, with his robotic voice, —which I imagine he owes to hours of radiation treatment— he’s just struggling to find a way around his pain.
I was in cubicle 17 last time. To my left, occupying the corner space and hidden by a curtain, was 16, and then, moving along the left wall, were 15 and so on. Of 16, my closest neighbour, I could see little other than the nurses coming and going, and hear voices, until an attractive man, perhaps in his early to mid-fifties walked out, heading, no doubt, to get some coffee. He wore a suit jacket, not some comfortable sweater, and was perfectly groomed despite the venue. I‘m sure he smelled good too. What I could sense from him was the temporariness of his stay here—he was here to accompany the person I could only imagine in the armchair next door. His eyes didn’t search the room. He seemed to be trying to maintain a kind of social neutrality as he moved about, free of the I.V. pole and bags that patients are tethered to. Free of cancer.
The hours passed. The I.V. bags containing all of our poisons were changed at the required intervals by hyper-competent nurses. And then a new face emerged from behind the curtain of cubicle 16. This fellow was perhaps in his late thirties, early forties. Tall and casually well-dressed in fitted black, from shirt to shoes. He was so different from his companion. He looked around as he came and went. He had an easy smile that drew me to his kind face. He could have been walking in an office building, except…for his I.V. pole with all the tubing attached to him, his shaved head and the bright red scar that began at his right ear and ran all the way up the side and top of his skull, past the mid-point. And the falter in his walk.
Brain cancer. You think that immediately. Then your mind runs through all kinds of terrifying scenarios. To words like glioblastoma. You imagine the surgery that he’s been through. You imagine what the first inklings of his illness might have been. You imagine seizures. You imagine the terror he must have felt when he was diagnosed. The bomb that went off in his life. The seismic ripples. The fear. And how far he’s come in a short time. And now, chemo.
Behind the curtain of room 16 there’s his story, most of which you can only guess at. But you wish him well. You send him every positive thought and feeling you can muster in such a place. You try to hold hope for him in your heart. You marvel at his beatific face, which is hiding so much pain.
In cubicle 15, right next to him, there was a couple. They arrived together dressed similarly in relaxed clothes: jeans, sweater, no fuss. He got comfortable and she sat very close by on the plain stackable chair provided. They seemed close in age: perhaps their early forties. They looked like the parents of a few kids—I guessed maybe between the ages of 9 and 13…something like that.
They spoke to each other in near whispers, their expressions tense and urgent. The nurse came and got things rolling. And I found myself staring at them. I couldn’t help myself. Their S.O.S. signals were impossible to ignore. Once his drip started, she moved closer to him, and rubbed his hand gently, and for a very long time. Back and forth, back and forth. Sometimes they spoke quietly, but mostly, she sat vigil in silence. Later, I noticed that he had raised one of his legs to rest on her knees. And again, without smiling, without really looking at him, she continued her soothing, stroking motion.
There was love there, but they were at odds. Everything about them was tension-filled and anxious. More whisperings and agitation, followed by a period of coldness. Then her hand would reach out again and stroke his…The silent inhalations and exhalations of a terrible shared suffering.
At mid-day, a plump woman dressed in civilian clothes arrived at their cubicle, and the wife left. The visitor moved close to him, sat, and a conversation began. I know she must have been a staff psychologist by the way she spoke with him—discretely, calmly—but also because she stayed with him at least a full hour. During their exchanges (which I monitored discretely—it’s so hard to look away from another’s suffering), I saw him move from tense withdrawal, to resistance, to openness and then, to tears. I couldn’t help but witness those: it was the only moment in the whole day when his voice—now raw and vulnerable—was audible to me.
And then the session was over, and his wife returned, and within minutes, she was whispering urgently to him, her face filled with anguish and tears. Her side of the story, I thought. Her reality. He didn’t reach out to her. I imagine that he was still held in the state of being he’d reached with the psychologist, feeling, perhaps (I really hope so) calmer, more centred, less afraid—and so unable or not ready to open himself to her again.
They fell back into their pattern. He, quiet and withdrawn; she with her soothing hand extended, as she focused on the book she was reading. And the love and pain radiated from Cubicle 15.
* * * * *
“No anguish I have had to bear on your account has been too heavy a price to pay for the new life into which I have entered in loving you.”
― George Eliot, The Mill on the Floss
“Your pain is the breaking of the shell that encloses your understanding.”- Khalil Gibrand from The Prophet
“One word Frees us of all the weight and pain of life: That word is love.”
I don’t know where to begin to describe the past 11 days. It’s been an epic encounter between chemo and the pathogens of the outside world.
It actually started when my sister Marie came to visit from Vancouver. Although this would be her 4th trip in a few months—to different continents and in very different time zones— the giant heart that beats inside her was committed to coming here, a week after her return from Chile (where she had worked very hard resettling her daughter, son-in-law and granddaughters into a new life there).
She wanted to accompany me to a chemo session, but found out only after her plane ticket was booked that I had had a week off because of a low blood count and scorched hands, and my treatment was now a week later than expected. “Fair enough”, she told me, “I’ll go with you to the appointments with the endocrinologist and to see your oncologist.” And that’s what we did, on the Tuesday.
Marie is a human generator, with energy that seems inexhaustible. It was so good to have her with me on that soggy, cold day when we headed into the city and went from appointments at one hospital, l’Hôtel-Dieu, to others at the CHUM, which is three metro stops away. We were gabbing so much that a couple of times, we found that we had set off in the wrong direction and had to backtrack.
It was the beginning of the week, and we knew that we had the luxury of many quieter days ahead to spend together. But as soon as our pace slowed, as soon as we settled in here, in the house, to talk and catch up, I noticed that Marie was speak-yawning, quite literally. There were all these things she wanted to say, but all her brain seemed to want her to do was yawn. And there were shivers too. She felt cold, she said (well, the house was cool, but Marie walks around in shorts in Vancouver on cold days and never seems bothered). It was as though her body no longer knew what time zone it was in.
The week passed, and then it was Saturday, two days to go before she headed home to the West Coast. We were having friends over because this was a scheduled IKEA-thon: 8 or more floor-to-ceiling bookcases had to be assembled so that we could finally get our cherished books out of cardboard boxes in the basement and up into the living room/library, where they would be close to us.
But, surprise, I never made it out of bed. I woke up sick as a dog, with what was either gastro-enteritis or food poisoning (my money’s on the latter: the thought of that smoked meat grilled cheese sandwich at the pub the night before still makes me feel green around the gills). I spent the day in bed, away from everyone: the fun, the voices, the laughter, the dinner, all of it. And thought non-food-related thoughts. And left my door open so I could listen in on the gregarious chatter.
But of course, a cancer patient is never really sure what’s going on inside their body, and I wondered if maybe something was going wrong with one of my medications. I was so relieved the next morning, a quiet Sunday, to wake up feeling shaky, but much better. Gastro or food poisoning it was!
And then I went to the den, to the giant sectional sofa Marie was camping out on, to see if she was up, and found her unable to speak, with full-on laryngitis, congested breathing, weak and sick as a dog, with a flight home to catch the next day.
Now it was her turn to be sequestered. Simon made that eminently, seriously clear. I was NOT to go near the den and Marie was NOT to leave the lower level she was on. This was to be my first true insight into my vulnerability as a chemo patient, and the havoc it can wreak. Simon wasn’t messing around. I HAD to stay away from whatever was making Marie sick, because as a chemo patient, I’m always immunosuppressed, and there’s no way to know how my body will manage to fight any virulent bug.
Marie slept all day, and recovered just enough, poor thing, to endure the slog to the airport the next day, the rental car return, and the 5-hour flight home (she seems to be doing fine these days). Meanwhile, Simon set to work sterilizing the den: each cushion, pillow, blanket and surface that Marie had touched, using a spray disinfectant and steam. I wasn’t even able to give Marie a hug before she left.
I suppose this should now be seen as the first test of our household’s HAZMAT response, because just four days after Marie’s departure, on Friday, Christian fell sick with an infection that mirrored Marie’s in many ways. He woke up so congested he struggled to speak and breath. His temperature hovered around 101 F. He was so weak he could barely get up. He was seriously ill.
Realizing what this could mean—his bedroom is next to mine and we share a bathroom—he contacted Lucie, my physician sister-in-law, who set off all of the alarm bells she could: this could be the flu; the flu could be lethal to me, his mother. I could wind up in intensive care. It could kill me. It would be best if Christian left the house. He was to have NO contact whatsoever with me. He was NOT to leave his room (except to use the bathroom across the hall which was now a contamination zone). He was to wear a mask any time food or water was brought to him. Anyone going near him (mostly just poor Simon the house biologist/parasitologist) was to wear a mask, gloves and maybe a lab coat too. Anything taken from Christian was to be washed and rewashed and the gloves were to be thrown out each time.
Friday, Christian’s temperature and symptoms were unchanged. Saturday, the same. Sunday, the same. He had soaked through his comforter, blankets, sheets, mattress cover. The minute he stopped taking Advil, his temperature shot up again. By Monday, the tension in the house was getting to me, and Simon’s hyper-vigilance was taking its toll: he was on edge and tired.
Aside from the microscopic parasites that were waging battle inside Christian’s body, I was the source of all of this anguish and anxiety and worry, and of the safety protocols worthy of the WHO (World Health Organization). It was me who was responsible for the tense, mobilized atmosphere in the house. Because of the chemo that has so compromised my ability to fight infection of any kind.
Christian was trapped in his room, isolated from civilization, because it was dangerous to me. And so, he has spent a week in there, watching TV, or online, or staring at the walls, alone, because of me. This is an intensely unwelcome side effect of chemo.
I’ve been feeling this way for days, now, and remembering a situation 6 years ago, when Simon, who lived in an apartment then, caught the super nasty H1N1 virus during Christmas vacation, and fell dramatically ill. I remember that the first thing he did was come home, to his parents’ house. I remember that we settled him in the living room, on the love seat, with blankets and a pillow and a TV table nearby on which we kept fresh tea and cold water, and monitored his temperature (there was one day when it stayed stuck at 104 F and scared us silly). And we were right there next to him, and we put on one DVD after another—many of which he slept through—and though he felt like death warmed over, he had us there.
Christian wound up going to the hospital with his father on Monday, where they waited and waited from 9 am to 10 pm. What is known, at this moment, is that flu (influenza) has been ruled out, and so has pneumonia. This is good news to both Christian and me. Blood was drawn for cultures to be done, and Christian should find out today if it’s a virus or some bacteria raising hell…
I’ve found this past week excruciating. Having us separated from Christian, with all three of us stalking around masked and gloved…It scared me. Illness reared its unwelcome head three times in less than a fortnight, and turned us all into hyper-alert germ fanatics. And the terrible thing is that it was necessary, and that it was on me. I am the antithesis of Typhoid Mary.
I don’t know that I’ve ever felt so disempowered and helpless to do anything to help my own sons. While he was at the hospital on Monday, Christian’s phone battery started to die, so he had to reduce contact to the weakest trickle. The lack of contact was painful to me. Like a connection between us was being stretched beyond bearing. I felt impotent. Useless. And like a giant pain-in-the-ass sickly obstruction.
I have to accept that during periods of contagion at least, I cannot be a mother, nor a caregiver.
Right now, I’m dealing with a bad case of emotional side-effects.
My understanding of what it means to sign on to a cancer research protocol is becoming clearer with every passing week. My nose is no longer glued to the window of treatments in the same way. I’m acculturating.
If I’ve understood correctly, the aim of the team of specialists who are shaping my life is to keep me in the full chemo protocol for a year, and then continue a second year just with Nivolumab, the immunotherapy drug.
Five weeks ago, I would have flinched at hearing this: only the first part would have registered. A YEAR of chemo? What human body can take that much abuse?
And then the first scan results came in, and I now know, for certain, that at least all of this isn’t in vain, and that modern science and my body have linked up and are giving me a fighting chance to stay alive a while longer. A GOOD while longer, is what I’m hoping and feeling.
Cast in this light, I think I can put up with whatever new side effects present themselves. Well…maybe that’s a bit too confident, but I do feel a renewed love of this carcass of mine, this sixty year-old body that has been asked to ascend the heights of Mordor. I’m so grateful for what it has accomplishing with the help of state-of-the-art medicine.
Rereading these paragraphs, I see how much Me-Me-My-I is in them, and it’s unsettling. Just a few days ago, I finished Nina Riggs’ The Bright Hour: A Memoir of Living and Dying. It’s a compelling, difficult book because Riggs wrote it while she was dying of metastatic breast cancer that spread to her bones and lungs over a period of two years. She barely reached the age of forty, and left behind two preadolescent sons.
I will not forget Nina Riggs, nor her challenging ordeal (her martyrdom, really): the early false hope, the rapid spread of her disease that became unstoppable, the painful treatments and myriad side effects she dealt with so courageously, so…adamantly. The last year of her life was a torment, and yet she held on. I don’t know exactly what drove her to dig so deep, but I suspect that it was her inability to accept leaving her children, whose lives and cares she shares in the book.
Her story presented me with one of the many scenarios that might await me, or any of us really, except that I’m right at the portal—the entrance to the place where the end is. I think Nina Riggs hung on as long as there seemed to be a path to follow: a new drug, a different protocol, a new surgery, a better pain killer. Until these and her tortured body were exhausted.
Whatever awaits me, I’m in this new life for 2 years. That’s what I signed for. It isn’t a comfortable feeling, but there’s something reassuring about knowing that a whole medical team is committed to me and to treating my cancer for such a significant period.
And so it is that I’m tied to two-week cycles in a two-year experiment. Minus one eighth, because I’m now three months in. It’s all very rational, very professional.
But within this structure is a simple patient: me. And while the physicians go about their business at the CHUM, wearing white coats and monitoring my case on their computers, I only live in their world for very short spurts: one day for tests and seeing the doctors, and one day for chemo, with extra days for tests as new side effects manifest themselves.
Most of this research protocol, this medical study, I carry home with me. It’s lived with friends, family, acquaintances and strangers. And my life is largely devoted to finding ways to make it all fit together, and to overcome my sense of uselessness and incapacity.
The truth is, I can’t do what I was able to do just 4 short months ago. Before chemo began, I imagined a life regularly chopped up into a few bad days and a bunch of good days—normal days—when I would be able to do pretty much anything I wanted. But that isn’t the way it is. There’s no more normal. There’s just managing change.
I no longer have the energy to go from place to place teaching adults. That life feels so far away. I can’t depend on my legs to feel strong under me. They’ve lost their bounce and these days, I’m just happy that they can get me to where I want to go.
I’ve told you about my hands and feet, which are fragile things now, with skin that burns in some places, is numb and thick in others or peeling off in strips. Opening a bottle of Tylenol, opening a jar of jam, putting on socks, holding a cup, using a chopping knife…All of these hurt, and are not always possible. So I ask for help.
My eyes are experiencing changes and there are times when, well into a great book, they simply won’t focus and instead start leaking, and I have to stop. My reading glasses are always cloudy, which makes me wonder whether the eye goop is continually splashing somehow onto my lenses. My gums burn when I chew gum and when I use toothpaste. My lips burn when I drink hot fluids. The inside of my mouth seems to always be coated with dead cells that make my mouth feel a bit like it’s lined with tapioca. My super dry nasal passages are permanently coated with bloody clumps of mucus that are sensitive and make my sinuses ache when I breathe, usually just when I’m trying to fall asleep. I pulled a square one-inch patch of thick white skin off the bottom of my foot yesterday, which came off like wax. No pain, and the skin beneath ready to take over. The undersides of my feet are a bruised red (where they aren’t snow white). The rims around my toenails are chocolate brown.
When the thermometer plunges, being outside triggers not only neuropathic pins and needles in my feet and hands, it also causes small spasms under any skin that’s exposed to the cold and wind, such as the tissue around my eyes, or else my cheeks or my chin, and I feel as though I’m grimacing, even if no one seems to notice. It forces me to bundle up like a fragile old woman.
Side effects of chemo. All of them. They’re predictable and monitored by the oncologists and nurses and usually, they can be alleviated enough that my “quality of life” (this is their great preoccupation) isn’t too negatively affected.
But what of the other side effects? There are so many parts of their chemo experience that patients keep to themselves—the interpersonal, intimate side effects that are also borne by the people they love. Sometimes, physical and emotional side effects become entangled.
For example, as the weeks of chemo have added up, Christian has taken to coming to my room now and then at bedtime, once we’ve both washed up and have put on our pajamas. The first few times, he asked me if I minded (of course I didn’t), and after that, he just text messaged from his room: “Can I come over?”. All he does is lie down on the bed beside me—I’m usually propped up and reading—and snuggles. Me and my 27-year-old baby.
There are times when we’ll just lie there quietly, our foreheads touching. Mostly though, we’ll talk about anything and everything but sometimes about small, meaningful things, like the fact that for most of his life, the thought of losing me was his worst nightmare (now that he has wonderful Vickie, those thoughts are waning). A simple phrase, but one that conjures the pain my illness is causing him. Or, on another evening, he told me how difficult it was when he first had the thought that I might not be the grandmother his children know.
There’s a special kind of awfulness to those kinds of thoughts spoken aloud when you’re in chemo. They hurt in an acute, specific way. They’re words that you can’t step out of the way of, they always hit, and that’s because their intention is sincere, and the bullseye is love. The thing is, I can’t always hide my reaction, and so, when I cry, my face scrunches up in a particularly ugly way because crying hurts my face since I’m in chemo. But what can I do? I cry. Then it passes.
I worry too about Simon, and what will happen if I die too soon, before he’s ready to handle all of the expenses of our new home. I think about him alone in this big place. I mentioned this once, and he told me that he had friends—a couple I know—who would perhaps share in a new multi-family configuration. Reassuring words. But awful words too, because they told me that his mind has had to go there more than once since my diagnosis, to the future place where I no longer live.
All of the thoughts and worries and practicalities that my sons are dealing with, and the responsibility I bear for them…No one told me about side effects like these.
The results from the Cat-Scans came in last Thursday. My sister-in-law Lucie, who is a radiologist and who therefore has access to such information through a medical online network, quickly sent me a rather jolting email; in fact, only a title which read: Appelle-moi. Call me.
It scared me. It was so bare bones that I thought she didn’t know how to broach bad news. I could have spent a terrible stretch frozen in worry, wondering how bad it could be, but it seems that I’ve moved into a more direct, head-on way of living. I picked up my cell and dialed, come what may.
She answered immediately, a minor miracle, as she almost single-handedly holds down the fort in the remote hospital where she is chief radiologist. There was professionalism in her voice, but also a special energy that drove her to speak as fast as she could.
Her first words were that my body is having a FAVOURABLE REACTION to the chemo protocol. She’s so intense: you could tell that she just loved saying it. This is a real medical expression that is determinant in oncology. It means that for whatever reason: extraordinary health care, being very lucky, being offered continuous, exponential love and support, THE TREATMENT IS WORKING! My body is collaborating, and in just 2 and a half months, the larger tumour in my lungs—there are many tiny ones sprinkled throughout them, but this one had the oncologists wondering if it might be actual lung cancer and not metastatic colorectal tissue, because it measured over 6 cm—has shrunk 30%, with the rest of the cancerous tissue doing the same thing. No one has yet seen the abdominal scans (except the liver, which now shows the same results and where there’s only a tiny speck of a tumour), but everyone expects to see exactly the same thing in my bowels because the cells being hit are all of the same type.
So, on Tuesday, I got to travel to the CHUM and meet with the head of the research study, Dr. Francine Aubin, and smile. She smiled a lot too. She’s very happy. And she made me understand that this was a terrific result and that she believes that the Nivolumab—the new immune therapy drug—is at work here; has kicked in.
How does one deal with such a mixture of…relief, joy, disbelief; a gut feeling that this was expected (simply based on the disappearance of my most obvious cancer symptoms); a guilty feeling that this is undeserved, and creeping superstition about saying anything at all about it? I wrestled with this. Should I share the news? What if it changes…what if they discover something that casts a pall over this wonderful morale boost?
But that lasted about 2 minutes and then the thought of being able to tell my sons, my mum (who deserves to hear something happy and reassuring), my sisters, my husband, my friends…it overrode everything else. It felt wonderful to have some lightness and joy to share. Even if it’s just the beginning and even if I have no idea how long my body will continue to cooperate and ally itself with the drugs being pumped into me.
There’s magical thinking, and then there’s disturbing conditioning, and I’ve been giving a lot of thought to the latter; about the many ways it’s coloured my life. It’s been with me since my diagnosis, which evoked memories of my parents.
When my dad was diagnosed with lung cancer in late 1987 or very early 1988, I wasn’t quite 30. It was awful news that was especially difficult because of our (my two sisters and I) strained and wounded relationship with him. The making of those scars won’t be told in this narrative, but with the distance of three decades, I realize that my father suffered from cardio-vascular disease, anxiety-depression and a good measure of obsessive-compulsive disorder that, combined with childhood trauma and something in his brain that could trigger explosive anger, were beyond his and my mother’s capacity to manage, at a time when the medical community had a fraction of the understanding of such things compared to today, and too few tools to deal with most of them. Which meant that my father was left largely untreated, and we, his three daughters, exposed to all of it.
My mother coped by covering most things up. Hiding what was happening in our house from the neighbours and her own parents and siblings. As much as she could, at least. For as long as she could. And so, when the cancer was diagnosed, she did what she knew best: she forbade us from telling anyone that our dad had lung cancer. She swore us to secrecy, until she felt the time had come to share the truth.
I remember feeling immediately that this was the wrong thing to do. My sisters did too. It was like being asked to swallow a bomb and carry it around in your belly for as long as you were made to. It was a dark and sad burden to internalize. It was maintaining the theatre of a life that had just been shattered. It was hiding anguish and pain. It was disorienting. It was anathema to us.
I don’t remember when the interdiction was lifted, or how people came to know…which is strange. I suppose once my dad started chemo, there was no more hiding it. He tried to keep going to work once his chemo started, but soon found that it was impossible (I understand this so clearly now: his stoicism was extraordinary). Because this was 1988 and the cancer was already in my dad’s pleura (the pair of membranes lining the thorax and enveloping the lungs), it seemed clear that his chances of living even 5 more years were bleak. And so, slowly, the world was allowed to know of his suffering and also of his need for love and kindness and support and companionship.
This opened the door to months of a different way of living and dying for my dad, who quickly hatched a plan with his baby brother Leo (my dad was the 7th of 9 children and Leo was the tail-ender) to have an extension—a sunroom—built on the side of the small house my sisters and I had grown up in, and then together add a wooden deck onto the back of that.
These projects, which my dad had to supervise at first, and then get right into, brought a wave of joy back into his life. Watching him with his leather tool belt hanging from his hip, side by side with Leo, through the spring, summer and early fall months, it was almost possible to forget how sick he was, and lovely to observe how poignant this dedication to the act of building was.
On May 24th, 1989, two years after his diagnosis and six days after my twins’ sixth birthday, which we celebrated together at St-Hubert BBQ and which he attended, my father died. It was very early morning, and he died at home, my mother by his side. It was the gentlest of exits for such a lion of a man, who was as slight and fragile as a bird on his last day.
My mother had lost her life partner and first love. There was all of that grief and sadness and abrupt emptiness; and the unearthing of memories and reliving of them to do, in their house, which was, for a long while after, still so suffused with his presence. And of course, there were all those hard months at the end, the months of beginning to let go, when they must have talked.
For reasons that we’ve never understood, my father chose to leave his daughters nothing. Not one of his beloved books, in which he might have written a dedication, not a written note, not a private conversation to stow away in our memories…nothing. He simply left.
I look back thirty years, and know that my father will remain a mystery to me.
I have always resisted the hiding and the opaqueness that smothered our childhoods. But recently, I came across poet David Whyte’s newest work, Consolations—The Solace, Nourishment and Underlying meaning of Everyday Words, in which he describes hiding as a way of staying alive, of holding ourselves together until we’re ready to come into the light.
Though Whyte’s insights help soften the feelings and attitude I have about those years lived under my parents’ roof, my appreciation of the value of sharing and opening up to others, and trusting in them, is the path I’ve chosen. The hiding is over.
In my lifetime, a lot of what I’ve thought about is fabricated within the trap my mind has set for me by keeping me preoccupied with the future. I wonder if I haven’t spent at least a quarter of my life planning for the future, thinking of what would be, what might be… Worrying about what my children’s lives will be like (they are grown men of 27 and 35, for heaven’s sake) what will happen to them, and their children (with climate change and everything going on in the world, it’s hard to zig and zag away from those worries).
Until 2017-2018, there was also what would happen to me in teaching, as the school board went through endless personnel restructuring; how I would manage to hold onto my job and do everything I wanted to do: teach, write, be a loving mother, daughter, wife, friend and grand-maman;, take care of my body and health; how I would fit it all in as I age, in spite of the cumulative fatigue and significant stress…How well I would live that “second life” (a life after life) promised to so many women who are mothers…
Would I be able to keep living with my husband? Would I ever find a way to redress the mistakes of my past that brought me to the place where I was: a mixture of daily passion, joy, love, buried sadness and marital stress…
When would my health begin to fail? (well, it was already failing, wasn’t it?). Would I be afflicted with breast cancer like my mum? Heart disease or lung cancer like my dad? Alzheimer’s? (I honestly never thought about a violent death)
How would I reconcile the different parts of me that pulled in different directions: the teacher, the emerging writer, the mother, the friend, the daughter, the disillusioned spouse, the person as yet undiscovered (because I feel that too—none of us ever stops changing and becoming)?
Would there ever come a time when I got my life exactly right, that is, when I became the best person I could be—the very best version of Michelle, who got all her shit together and arrived at the end of her life having worked through most of the distractions and mistakes and simply become a genuine, good person?
(The worry generator in your own mind undoubtedly produces similar thoughts, like small, irksome movies that eat away at your serenity.)
And then there was my cancer diagnosis, that peeled away everything extraneous, and focused an intense beam. It brought all of my fears right in front of me, reducing my field of vision. What have been my worries since July? Not the big, broad strokes on the canvas. It’s the details of my life that are preoccupying. I have become myopic.
What’s chemo doing to my body? What is this change in the pigmentation of my skin? Is it dangerous? Permanent? Can a person develop melanoma while undergoing immune therapy and chemo? Are these changes to my body—its premature aging—reversible? Will my body recover its strength and musculature? How long will it take for my hair to grow in and for my body to return to its “normal”, familiar appearance?
And what about after chemo? Will there be radiation? Will every lesion in my body be hunted down relentlessly? Will there be surgeries? How many? What if the metastases make a spectacular resurgence? How much time will I have after this first wave of treatment ends before cancer returns? How many years like this year can I endure? How strong am I? What if cancer goes to my brain? How long will I accept to live with that before I choose release? What if it migrates surreptitiously to my bones? To my pancreas? (these are among the worse-case scenarios because they’re the most painful)
What if I can never teach again? Do I want to teach again? What if I run out of money? What if, what if, what if…There seems to be no limit to the apprehension my brain can manufacture.
So many waves of angst that could just keep rolling over me, drowning out everything else. Which they did for a while.
But something has happened. It rose out of my life and almost completely snuffed out the fear that I was stoking and that swirled around me. It emerged out of a thousand threads: from the thoughts, messages, prayers, benevolent intentions and wishes, warmth and LOVE of the dozens, perhaps hundreds of people who have hugged me, messaged me, called me, visited me and rooted for me since my diagnosis; from the impeccable, humane, professional and all-encompassing care I’ve received at the CHUM; from the radical transformation of my life which brought me to this peaceful house in this quiet town that is encircled by nature; from the tranquility I find here, which allows me to simply exist in moment after stressless moment; to the resolution of the sadness and pain of my marriage through separation; to the gift of TIME, which was foist upon me by the exigencies of chemo, and created large spaces of forced idleness that I filled by writing, napping, reading, thinking, listening to music alone, and watching television all curled up in a blanket…I know I’m repeating myself here, but it stills feels unreal to me.
The truth is, I’ve never been so stress-free. Imagine that. It makes no sense, but the fact remains that since I’ve learned that I have metastatic cancer, I’ve moved closer and closer to a place of calm and peace. Maybe that’s because these past three months have not only pulled me out, by the roots, of my previous life and patterns, but have also stripped away all of the weeds and strangling things in my life, placing me squarely before the starkest possible truth: that I am mortal, that I WILL die, that I have NOW, and that my future is unwritten. NO ONE KNOWS what lies before me, except that I will die, as will we all. I don’t want to live for all eternity, so why should I be afraid? Or put another way, why should a fear of pain in the future cause me pain in the present?
On November 13th, I’ll undergo the first CT-Scan since I began chemo. The results could be crushing. They could also indicate that the treatments are working beautifully. They’ll be given to me roughly a week after that. There are indications from my body that there have been positive changes: certain symptoms of my cancer have simply vanished. What should I do with these thoughts in the meantime?
In a lovely, thought-provoking novel by Matt Haig that I’ve just finished, titled How to Stop Time, I found this series of questions. To the question: What am I afraid of? , I would add: Why am I afraid?
And then, I would turn to this list of questions, which is nestled at the end of Haig’s How to Stop Time, and I would delight in the answering:
“And, just as it only takes a moment to die, it only takes a moment to live. You just close your eyes and let every futile fear slip away. And then, in this new state, free from fear, you ask yourself: who am I?
If I could live with doubt, what would I do?
If I could be kind without the fear of being fucked over?
If I could love without fear of being hurt?
If I could taste the sweetness of today without thinking of how I will miss tomorrow?
If I could not fear the passing of time and the people it will steal?
What would I do?
Who would I care for?
What battle would I fight?
Which paths would I step down?
What joys would I allow myself?
What internal mysteries would I allow myself?
How, in short, will I live?”
[This is an excerpt from Matt Haig’s How to Stop Time, Harper Collins, 2018, p.314]
Looking at your face up close in a mirror, like when you’re putting on makeup, you see the small ravages of chemo: the darker skin over your lips that looks a little like a moustache from a distance; the much deeper circles etched under your eyes that cause you to use a concealer stick for the first time in decades; the strange complexion you have that’s like an unhealthy tan but is really hyper-pigmentation caused by the chemo (which has made appearances all over your body too) ; your missing lashes and eyebrows, thinned to match your bald head that is now growing a fluffy, bristly down that’s as white as your mother’s was. The eyes that look back are knowing, and that brings you closer to yourself, and perhaps, to the knowledge that you’re stronger than you thought.
2. With everything that has been stripped away, you have never been more YOU. Accept yourself.
3. When you wear your beautiful, real-hair, expensive and stylish wig, no one can tell you have cancer. But oddly enough, you very often choose to leave the wig behind—which still feels like a disguise—and head out with one of the cool caps or beanies you thought to buy before chemo even started; before you lost a single hair on your head. The other day, at a local tea shop, the assistant greeted you saying: “Oh! I love your new haircut! It’s lovely!” and before you even took a nanosecond to think, you replied: “Oh, thank you! It’s a wig! I’m in chemo!”. You were surprised and a little dismayed to see her turn beet red from discomfort. That wasn’t your intention: it just came out that way !
You find that many things that once frightened you no longer do.
4. Your life is on a brand-new track. Your days have emptied out to make room for chemotherapy treatments and medical appointments, and tests, and rest, and recovery. In exchange for the loss of your ability to work and of such a big portion of your energy, you’ve been given lots of static time—the kind that allows for calmness, quiet, peacefulness, meditation, writing, reading, watching, thinking, listening, and just being. You’re more often alone during the day because you’re home, and you find that this solitude is mostly replenishing. You have never felt so little stress, so at peace. You can’t quite understand how this is so. You know it won’t (and shouldn’t) last. It isn’t life, but it’s your life right now.
5. Being open about your cancer and treatments, especially the way you have, with a series of blog posts, has not made you a pariah. Instead, it has opened channels with people you’ve never met and some you barely knew. It has deepened many friendships. It has given you AND others a different means of understanding cancer and its treatment, and of banishing judgement, isolation and misunderstanding. At least, that seems to be what you want and what others want too. You huddle with them, and it warms all of you.
6. During those low post-chemo days when you sleep, shiver, and drag yourself about, and know that your body is drained and struggling, it’s okay to submit to its needs. Your body is brave and tough and wants to get you to the end of this trial. It’s doing everything it can. Love it back.
One. When the impulse comes to isolate yourself, resist it. You can give in at first, because maybe your energy or your blood count are low, or you’re in pain, or because you need the quiet and the rest. But not for long.
Humans who love you bring energy of the very best sort. They don’t always know that they’re also bringing the noise of the outside world that can make you feel despondent, or that you don’t feel able to deal with. They almost always mean to bring LOVE and to give CARE—a good meal, a hot tea, a movie watched together. Laughter. Companionship. Being seen and feeling connected. The things that make life worthwhile.
Two. If you feel low. If you feel lost in end-of-life thoughts, or fear, or sadness. If you feel purposeless. If you feel sorry for yourself (a totally legit feeling, in my estimation, in small doses). If you feel pulled out of time and unmoored…
READ A MATT HAIG BOOK.
This advice will fit most of the situations you encounter. Matt Haig is a lovely, British human being, husband and father. He’s also a prodigious novelist (7 times) and memoirist. Every book of his that I have read (3 so far) has been poignant and filled with such joy that he has changed the way I think about life. I’m convinced that he writes each one with this intention. The first one I read was The Humans (2013), which delighted me and left me filled with joie de vivre and also left me pensive. The second one was his startling memoir called Reasons to Stay Alive (2016) in which the reader learns about the author’s long battle with depression. The title suggests he was victorious. And, with The Radley’s (2010) waiting next to my bed, I’ve just finished How to Stop Time (2018). Anyone living with cancer will find this beautiful novel helpful. All of Matt Haig’s books leave the reader feeling replete, and of all of them, I think How to Stop Time may be the most touching and most likely to help you to keep thinking and feeling on a path without fear.
Three. Write. Keep a journal. Jot down your soul states or random thoughts or observations about the leaves falling; or the noisy truck that’s getting on your nerves; or how much you miss the real taste of food; or what made you blue just hours before; or what happy thought or insight you just had…
Write about a hobby, or something that interests you.
Make a list of all of the people you love and care about.
Make a list of the things that worry you.
Write about your pet.
Make a list of all of the foods and drinks you’ll gorge on once chemo or radiation are done.
Make a list of what you miss, then make a list of everything you would have missed had you not been on Cancer Hiatus.
Four. If you’re like me, and tend or tended to wear the same clothes to chemo or radiation treatment all the time—in my case, the tops I wear have to have front buttons so that I can leave with an infuser filled with a chemotherapy drug tied around my waste that continues to pump its meds into me for 2 days— throw it out or give it a vigorous washing and then give it to NOVA or any local charity. I think that once that part of treatment and living with cancer is done, you shouldn’t wear its uniform. Make a fresh start. Buy a few items in new and different colours. Make the outside match the changes inside you, especially the changes in the way you see your life, and the way you see yourself.
Five: Cancer’s aftermath
This isn’t really about the future. The future is unwritten.
This is about how far we’ve travelled so far, what we’ve become, what we hope for or know that we want from life.
It’s been a rough two weeks. I should have had round 5 of chemotherapy last Wednesday, October 17th, but on the Monday, the usual day for my pre-chemo blood tests and checkup with the oncologist, I was red flagged (emphasis on the red): my hands, my poor, scorched 5 FU tortured hands, didn’t pass muster. Dr. Lougnarath looked at them for a matter of seconds and said (in French): Oh, well then, we’ll skip this week and give Mme Payette’s hands a break.
Empathy. What a beautiful thing. I really didn’t know how I was going to get through the torturous Friday that awaited me, when my hands swelled up like knackwurst on the bar-b-q again.
But the truth is that I really didn’t feel well and hadn’t for days. On Tuesday, I spent hours commuting, then a few more in the waiting room of a hospital associated with the CHUM, with Christian by my side, in order to be seen quickly by endocrinologists (something about an elevated TSH level, which turned out to be no big deal), then back on the metro and the bus and finally my car…and then home.
Through all of this, and for several days previous, I had felt shivery, unsteady on my legs, and 95 years old (or at least, how I imagine that might feel). And so, it came as blessed relief to find out that no matter what my hands looked like, I wasn’t going to have chemo anyway, because my neutrophils count was very low.
You may have noticed all the underlined words. It’s meant to show even those of you who’ve never been near a chemotherapy ward, that cancer comes with its own reality that includes a language that patients and their loved ones become very proficient at in a hurry. Neutrophils—a friendly enough word—basically are those white cells that fight off most of the regular bugs you’re exposed to (in other words: you need those levels up in a hurry).
Monday, October 22nd
This is something that no one tells you about and that you cannot prepare yourself for in chemo. It’s that moment when you hit the wall: the nadir.
Chantal, my pivot nurse, told me today that with a 2-week chemo cycle, a person’s body barely has time to eliminate most of the poisons injected into it before it’s being assaulted again. When it’s your body that’s the experiment (literally: this IS part of a research study), it’s a reality that’s psychologically inescapable.
October 23, 2018
I almost typed a different date. I had to stop and really consider where we are on the calendar. For a minute, I was lost.
It’s just one of the ways in which my life has swerved since July. Without the grounding work of teaching, which is so schedule-driven, my sense of time has started to wobble and fade. Even my hair-colouring appointments with Gabrielle, my friend and hairdresser, were as regular as a metronome. Alas, I am now hairless.
The only thing that stops me from floating off and away from “regular” life is the boxy tightness of my two-week chemo cycle. Tests and consultations are almost always on the Monday or Tuesday before chemo, which is every second Wednesday. Then there’s a lost period, that seems to vaporize my life into passivity, naps, lots of television and a feeling of biding my time until…well, at the most basic level, till I can walk and eat and do things like everyone else and then, looking a bit further ahead (dare I?), till I can rejoin life the way it was (I think there’s no going back to that). The way it could be? (Better).
I had a wonderful evening yesterday. My friend Cindy and I went over to the Hudson Theatre to listen to novelist Ian Hamilton talk about his astonishingly successful Ava Lee series of mystery thrillers. He was very sweet and unassuming and wry and sharp as a tack, and we had both read his books, so we were fully invested. We left with signed copies and the feeling that this man cared about the quality of his interactions with his readers. He mentioned the pure joy he felt each time he sat down in his basement office to write the books whose pages his imagination was filling up faster than he could type them. And that, of course, is where I found one connection with this man whose previous career took him all over the world to do business: in the IMMENSE JOY that flows to him from his writing. This is what I asked him about.
In bed, all wrapped up under the covers at the end of the evening (it was rainy and cold last night), I thought about that kinship. Mr. Hamilton, you are a comrade, in a tiny but important way, because we share a common passion. Then, my phone buzzed, and it was Cindy, writing “Thanks for a perfect evening.”.
Lying quietly after reading Cindy’s phone message (actually, I had to turn the light back on and lean on an elbow to read it), I fell back under the covers feeling ….
My goodness. After a pretty shaky couple of weeks, this is how I felt. Happy. I like typing it because it has been so absent. Happy, in the sense of content to be exactly where I was, in that moment. This feeling kept me awake. The unexpected, improbable, delightful lightness of it.
Because I wear ear plugs to bed (though I no longer sleep beside someone who snores), I can hear my heart beat as I lay my head down on the pillow every night. When Cindy’s message buzzed in, I was doing exactly that: listening to the pa-puh, pa-puh, pa-puh, pa-puh, pa-puh, …of my beating heart, thinking: you are a wonder, little heart (it sounds little, inside its cage of ribs). How do you continue to beat in spite of everything I’m doing to you? pa-puh, pa-puh, pa-puh, pa-puh, pa-puh, …Does the chemo reach your cells? Is it wrong to ask you to spread its toxins around? pa-puh, pa-puh, pa-puh, pa-puh, pa-puh, …Do you know there is cancer traveling in the blood you pump? Would you still beat if you KNEW?
My heart has no choice but to be an accomplice in spreading metastatic cells. It can only beat and pump my blood and keep me alive. It’s the ultimate neutrality.
I hold nothing against it. This heart of mine. It’s rhythms, pa-puh, pa-puh, pa-puh, pa-puh, pa-puh, are mostly steady and the pressure it puts on my blood vessels, safe and healthy. It beats though I am in chemo. It beats though my cancer is stage 4. It beats, even when each contraction sends painful 5 FU to my hands and feet. It beats faster, and, I think, contracts harder when I cry. It beats slowly when I sleep.
Last week, in Hudson, most of the deciduous trees were still green, and with all of the towering old pines thriving in the sandy soil, autumn still seemed more anticipated than real. But with the arrival of colder, greyer days, there’s been change.
In the wake of chemo last Wednesday, I missed it, spending almost all of my time inside a strange and artificial world of side effects and rest. But yesterday, Christian and I drove to the Village grocery store, and that’s when I noticed how quickly the colours of fall have taken over the landscape.
It’s pouring rain as I write this, and the forecast says that’s about the size of today. In an hour, a man will be here to change the carpet on the main staircase and upstairs hallway of our house. First, he’ll remove the one that’s been here since 1975 (with a zillion staples and small nails holding it solidly in place), and then he’ll put down the new and hopefully resistant replacement. I wonder if this will still be Simon’s house in 45 years? He will be 80 years old then. And probably still changing the world.
Earlier this morning, around 5:30, some of the rain sounds entered my bedroom through the inch or so of window I had opened the night before. No matter how well or unwell I feel (or how cold), I like to keep an aural connection with the world outside.
I’ve never had my own bedroom, and before my separation from my husband and my move to Hudson, I had not slept alone for any length of time for 37 years. Now, I have a room that’s mine, at the end of the upstairs hall, tucked away to the right. This bedroom of my own is a strange place for me. I’ve spoken a little about this. I suppose that in my mind, it was going to be the bedroom in which I lived to be an old woman. I remember, when we were house hunting, Simon talking about houses with too many stairs that would be a problem for me as I got older; and I also remember rolling my eyes, thinking of my 83-year-old mum, who climbs 14 steps multiple times each day, going about her business (though she now rations her trips to the basement). And besides, I’ve only just turned 60!
It’s no longer possible for me to look at my room this way. It isn’t a good idea to look so far ahead. Like everything else in my life since my cancer diagnosis, what was once excitement and anticipation regarding our new home in Hudson has been tempered. I’m still not completely settled in yet. A lot of my things—those objects whose value was never decorative, but were mementos of a timeline that rooted me—are still in boxes or drawers, or shoved on a shelf, jumbled with stuff I don’t care about.
I suppose the fact is that I don’t know what—though I emphatically know who— I care about now. Do any of these things matter to me? I was happy when my husband came to the house and put plain white curtains up in front of my window. It was kind and helpful and I now have valuable privacy, as my window looks out onto the street. I value each and every piece of jewelry, each book, and jar of skin cream, and tube of hand cream, and box of tea, and cookies, and tray of squares or muffins that I’ve received since July, all of which were meant to proffer love and care and healing. They are—and more likely were, if they were among the delicious things—my talismans and elixirs.
And now I find that I’m coming to love my room. The past few chemo cycles have been harder to get through. Their after-effects have lasted longer and longer and been more debilitating. Today is Thursday, which means that in 6 days, I’ll be back in chemo again. The skin on my hands still hasn’t stopped peeling away. My nose still bleeds easily. My legs are still wobbly at times. My eyes still leak sticky fluid that’s irritating. I’ve started getting discomfiting stomach cramps, out of the blue.
But there’s my room with a view, and in that room, there’s my bed. And during the past few chemo cycles, they have become a haven.
At the worst of this past cycle, on day 3, when the burning in my hands and eventually in my feet had reached a point where they were utterly useless to me but so painful that all I could do was shiver and whimper, evening came, and with it, the comfort and safety of my bed. With only Extra Strength Tylenol in my chemo management arsenal, I really didn’t know if it would be possible to sleep.
It must have been exhaustion that cleared the path (and the two Tylenols), but I slept ten hours that night and woke at 8:21 the next morning, still in pain, but less so. I took all of this in without even pushing back the covers. My comforter and blankets felt light, and warm, and I can honestly say that I considered staying there for hours longer. Being under those soft covers was heaven, and I didn’t want to leave. What made this so strange and delicious is the fact that I haven’t slept well—haven’t fallen into deep, restorative sleep—for years.
There’s no shame in escaping the effects of chemo and the exhaustion of the heart, soul and body. I often want to lay down mid-afternoon and just nap…Let the hours fall away…Escape a situation that has become in large part a struggle to manage my reduced life. But I resist, as much as I can, because there are better reasons to stay awake, to take in the sun and sky, to write like this, and to write to everyone I care for, to have friends over, to try to be helpful to my sons who carry more than their fair share, to be with my grandchildren, to read and read, to go for blessed walks in the winding streets of Hudson and gawk at how lovely it is, and to reconnect with life, and the joy of living.
But there are days when I could sleep for a thousand years.
I had my fourth round of chemo two days ago. After each of the first two rounds, I experienced one day of fever, and several days when all I could do was lie down and sink into the exhaustion I felt, and my uselessness. Then, on my third round, the fever never manifested. I waited for it…never felt sure what was coming…but it left me well alone.
That was the upside. In exchange, unfortunately, I now deal with two new side effects that are almost as paralyzing as fever—though less scary. The first is a type of peripheral neuropathy caused by one of the drugs I’m administered (Oxaliplatin) that causes hypersensitivity to cold and even cool objects, drinks, foods, even breezes, and presents like pins and needles jabbing your hands and feet (in my case, mostly my hands), and a weird, if occasional, feeling of cramping in my face and lower legs, and something I’d compare to electric shocks. Luckily, avoiding direct contact with cold and cool things—a metal object in a cool room or a gulp of cool water or anything taken from the fridge, for instance—pretty much limits these effects, which usually last 3-4 days.
The second side effect is linked to the drug 5 FU that is so essential to my treatment. In the range of problems that might be caused by a drug, I never would have come up with this one: it’s called Hand-Foot syndrome or Palmar-Plantar Erythrodysesthesia. Unfortunately for me, 5 FU is the drug that I take for 46 more hours upon leaving the hospital (the one that I carry around in the fanny pack). As I write this, it’s still emptying itself into my port-a-cath. It’s almost empty by now; I have about 4-5 hours left to intake before a nurse removes it at the clinic nearby.
I feel good today. I have energy. Appetite. There are so many things I’d love to do in the house to help my sons who otherwise have to do it all. I’d love to go for a walk, but letting my hands hang or swing against my body is contraindicated. So, aside from gently tapping this keyboard that is a lifeline at times like these, I can barely use my hands. They feel like they’ve been scalded. The symptoms are quite severe. There’s a weird discolouration of my palms and fingers that are striated white and red. All of my fingertips are swollen (this time, I knew to remove my rings before the swelling started). Bending any part of my hands: the finger joints, even trying to close my fists, is painful enough that it interrupts my breathing (I don’t gasp, but quite often, I can’t manage a breath). Holding a spoon, opening a jar, using any kind of hand or finger pressure to do anything is extremely painful. Last time, when the swelling subsided, skin peeled off several of my fingers. My body barely had time to produce a new, paler protective layer of skin before chemo started again.
By a funny, if clearly cruel twist of fate, minimizing the effects of the peripheral neuropathy means avoiding cold and applying heat, while minimizing the effects of palmar-plantar erythrodysesthesia means avoiding heat and applying cooling. Which means that all I can do is apply skin balm and protect my hands with white cotton gloves. I’m stuck with both until these symptoms pass…
I fell upon these words yesterday. This seems to be the time in my life for considering the tales of living and loving that my body has to tell.
Our bodies are most perfect at birth (though even this is not given to all of us), because we have still to live; we have barely begun. But yesterday, after reading Donne’s words, I started jotting down all of the ways that my body has been compromised in my lifetime, excluding commonplace childhood diseases, accidents, scrapes and scratches. I was looking for those body experiences that carry a heavy weight of sense memory and form the tissue of some of my life’s most formative narratives.
I’ve listed many, but not all, of the important ways my body has been harmed over my sixty-year lifetime. These are the ones that immediately came to mind:
– My brand new permanent bottom two front teeth, just freshly grown in (they may have been a few months old), were smashed to bits by a stray hockey stick when I was 6 years old. That was the last time I ever played street hockey. I remember my mouth full of crunchy tooth shards. I remember my mother being very upset (“Oh Mikie !” she moaned). I remember the pain caused by the icy outdoor air reaching the exposed nerves.
Those teeth were never capped. Instead, they were filled with an amalgam that discoloured them. They abscessed twice. I lived my whole life with small, darker lower front teeth. It’s really only since the advent of video cams and smart phone videos that I realize how prominent they are when I speak—but disappear when I smile.
– The bride of Frankenstein look I had for a few years, after having thyroid surgery (a partial thyroidectomy) at 14, in third year high, which left a 4-inch, very red horizontal scar across my neck. Surgical techniques are far more refined now. I remember how stressed and scared I was during the weeks leading up to the actual surgery at the Montreal General. I remember how I felt like a freak. I remember curious students wanting to see the scar that I hid under turtle necks for the first few weeks. I remember how it was one of the first things Sylvain, whom I married, asked me about on our first date, when I was 17. I remember how it all unfolded during some of the most unhappy, turbulent years of my life.
– At 24 years old, I said goodbye to my beautiful, perfectly smooth, flat abdomen, when I became pregnant with my firstborn twins, Simon and Jeremy. I weighed 119 pounds the day the pregnancy was confirmed, and 172 pounds when they were born, at term (!). Since that day, my body has carried the stretch marks and the scar from the emergency caesarian section required to save Jeremy, my second twin’s life. Their birth is one of the most intense, happy and traumatic events of my life. I remember the day I went to see my obstetrician for my 6-week post-natal checkup. It was lovely, and sunny (it was July 1983), and after he examined me, I remember saying to him: “I feel like I’ve aged 10 years.” I also remember him very clearly saying: “Hmmm…well…that’s about right.”
– Since Christian, my youngest, was two, I’ve carried the small record on my abdomen—two unobtrusive X-like scars—of the removal of my gall-bladder by laparoscopic surgery. A tubal ligation was also done while I was under. It was done on a Friday, and two days later, I was driving my 10- year-old twins to the swimming pool to train, with Christian next to me. The hospital where the surgery was done, The Reddy Memorial, no longer exists. Nor is it possible any longer for two surgeons to coordinate their schedules to save me the experience of a second general anaesthetic. It signalled the end of the pain my gallbladder was causing me. It also signalled the end of my fertility. I remember being so worried that I wouldn’t wake up from the anaesthetic. That I would be one of those terrible cases of women going under for a tubal and disaster striking, leaving them in a vegetative state for the rest of their lives, effectively abandoning their children and mate. I remember being admitted the previous afternoon, and how the staff pretty much left me alone, to sip tea and enjoy the extraordinary luxury of not being a wife or mother for a little less than a day. I remember that I read The Bridges of Madison County that afternoon, front to back, and felt like I’d spent the day at a spa. I remember crying, as I made the decision to have the tubal. There are endings in our lives that we cannot recognize as they occur. This wasn’t one of them.
– A far more terrible thing has happened inside my body than the cancer that is now hurting my healthy organs and tissues. For a short time, it turned my body into a tomb. It was the loss, the death in utero of my third son, Gabriel, stillborn 19 months before Christian’s birth, at 29 weeks’ gestation. Of all of the events of my life that were immensely painful, but which left no marks on my body, Gabriel’s stillbirth was the most scorching and, I think, the most transformative. Love and loss are meant for each other. They’re life, really. Losing Gabriel deepened my understanding of this. It was a seminal moment in my life. I think that more than any single event, though it left no visible traces, Gabriel’s death prepared me for this journey with cancer.
– And then, there’s the simple fact of aging—how each of us grows old, if we’re lucky enough to have that chance. I was awoken to this early on. It was the appearance of the first grey hairs scattered among my thick, wavy dark brown hair when I was just 19, that confirmed that I had inherited premature greying from my mother’s side. Those white hairs multiplied furiously when I was in my thirties. My son Christian was born when I was 33, and I remember thinking that I didn’t want him to be raised by someone who looked more like his grandma than his mum. And so, until just last week, when I had it all shaved off, I’ve been trapped in a cycle of colouring my hair (lighter and lighter as the decades passed), not wanting to see, in the mirror, the face of someone whose appearance didn’t match the vitality I had and the image I had of myself.
There isn’t a hair on my head right now, but I hope to see it grown in grey or white someday soon. Last weekend, when I’d just had it all shaved off (by a lovely woman with an electric hair razor at the wig salon), it was stubbly and itchy and tended to catch on the under-webbing of my wig. At home, I was shy about my bald head and kept it hidden under caps. But Christian wouldn’t have it. He wanted to see my hairless head. I haven’t asked him why, but I sense that it was about love, and taking in my vulnerability, and trying to help me feel better about myself by removing any sense of shame or embarrassment about my predicament. And curiosity too: wanting just to SEE, and wanting specifically to see the shape of my head—my skull.
Hearing me grumble with the stubble and the wig, Christian offered to shave my head with a hand razor. And I said yes (I surprised myself). And so, he brought a chair into the bathroom, and got everything he needed ready. I took off my beanie, and Christian’s instant response was to smile and say: “Oh! You have such a nicely shaped head!”. And then he soaked a towel with warm water and placed it gently on my head, once…then again…and then he applied the foam and began shaving my head with a hand razor. We were both very quiet, and Christian’s very calm hands moved over my scalp, and I closed my eyes, the way I do at yoga, and simply let myself be taken care of.
“Love’s mysteries in souls do grow,
But yet the body is his book.”
Last week, one of the oncology psychologists on staff at the CHUM called me, wondering if I’d be interested in meeting her to talk about my experiences so far. While I thought of saying: No, no, that’s not necessary, I’m doing pretty well, blah-blah-blah, another part of me remembered the sadness I’d recently struggled with. How quick my reflex was to dismiss her invitation because I didn’t want to go back to the CHUM on my off-week (that is, my chemo-free week), and perhaps because dismissing her was also a way of making some of my medicalized life just go away…
And then I also remembered that I had booked an appointment for Friday at 2pm with Les Jumelles, identical twins who have been in business 35 years, helping people (mostly women) suffering with hair loss, and whose salon is just a 15-minute metro ride from the CHUM. And so, I said yes to the psychologist, Véronique, and booked us for noon.
Véronique is actually at the end of her training, and her PhD supervisor, also a woman, sat discretely against the wall, tucked away in a corner, and simply listened and took notes for the entire 80 minutes (we should have gone to 90 but Les Jumelles were also expecting me).
It was a strange experience at first. I’ve consulted before, for other reasons, and am convinced of the immense value of the therapeutic process, but to be sitting in a sterile room on a stiff chair facing two psychologists, at a time when I feel as though I’m falling from a great height, with no sense of where the bottom is…Well, where do you start?
Everything about what’s happening to me is contextual. My separation from my husband; my new, multigenerational home; my diagnosis and treatment. These are all so intertwined. There have been so many simultaneous changes. Attempting to convey any of this in 80 minutes…
In the end, what I wanted to express to Véronique (or else why bother consulting her?) was my distress, which is always here, inside me, woven between my hope, my daily life which is so full of meaning and so suffused with love, and woven also into my fears about the possible destruction of my life and of me, and the suffering that attaches itself to this, which I cannot help but observe, distraught, as it seeps into the lives of my loved ones. I want to get through this experience of cancer and chemo, get right through to whatever outcome awaits me, but I want to get there without causing pain to the people I love. This is impossible because it isn’t how love works. This was what I left Véronique with last Friday. She said that she’ll come and see me as often as possible while I’m in chemo, which may not sound ideal, but which is a very sensitive decision on her part, leaving me as much time away from the CHUM as possible.
Next, I had to set off to the wig shop. Just like my meeting with Véronique, heading off to the shop in a part of the city I rarely even drive through was something I had to do alone. I surprised myself by doing this. It was a secret that I had largely kept from myself: that I could arrive at this point.
From what I had read (spurred on by wishful thinking), people treated for colorectal cancer rarely lost their hair. It wasn’t one of THOSE cancers. Their hair might thin, but they usually fared quite well. And then came the chemo, and by week three, all I had to do was pass a large toothed comb through my hair to collect handfuls of it that had detached right at the follicle. There were other similar torments: washing my hair in the shower and collecting the strands of hair, like thick dark ribbons, caught between my fingers and clogging the drain. I had my hair cut much shorter, hoping to save it, but it just made it easier to spot the dozens and dozens of strands clinging to my clothes and collecting in the corners of my bedroom. And then I realized that my hair was so thin that you could see my scalp easily, because my part was widening every day…
My thick, wavy hair, that I had just grown longer after years of wearing it short, had become the drip of the loss that is a daily reality when you’re in chemo. And I couldn’t stand it anymore. Couldn’t stand the feeling of decay that it evoked in me. So, I decided that I would do what I thought I would never do: I walked into Les Jumelles, feeling alone and not very tough, and I tried on wig after wig—most of which I thought made me look appalling—until I saw one that seemed, um, human, and that I thought maybe I could wear.
A small cap was placed over my real hair, and the wig was placed over that, and there I was: straight-haired, with a long fringe that cut across my face. It was impossible for me to speak above a whisper, or to smile. Something was happening in that moment that felt unreal. Cinematic. Taking this step was for me, in important ways, a final retreat, or, looked at from the other side, a determined decision to walk toward all of what chemo means.
The women in the shop thought I might return on another day and have them shave my head and do some final adjusting. They were surprised when I said that I wanted my head shaved right away, and the wig styled and trimmed (with a shorter fringe at the front please!).
And then it was done, and I stepped out onto the sidewalk feeling like some false, floating thing was on my head, and that everyone would stop and stare (and maybe screech). No one batted an eyelash. I had already ordered beanies and caps that I would be able to wear when I wanted out from under the wig, and I wear them a lot at home. But out in the world, the wig, while still an alien thing, is also a valuable accessory because it allows me to walk around without a giant C, for chemo, stamped onto my forehead.
Today, the house is empty, and so it’s my time to write. I didn’t dress up, or put any makeup on, and I just covered my head with a dark blue beanie (no wig) and sat in from of my laptop. Within minutes, the doorbell rang, but I didn’t answer, because I didn’t want to be seen like this. The delivery man left a package by the door. It took just seconds for me to see that he had left the wrong package. Five minutes later, the doorbell rang again, and I knew I had to answer, and make the swap. And face this man.
Then, 15 minutes later at the most, the doorbell rang again (!!), and this fellow, whom I could see through the bevelled glass, seemed pretty insistent, because he rang another time, and just hung out in front of the door. Oh, man. Well, I answered the door. He was a lovely fellow coming to take measurements of the floors because we’re having work done on them. I had been expecting him at 7 pm.
Something is happening to me as I live with cancer and chemo. I’m being made to let go of more than I can count. And each time, I survive the loss. And each time, I am given something I didn’t have. Insight, clarity…I can’t say yet.
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 our paths 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 atJohn 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.”
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.
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.
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:
Nivolumab 240 mg, IV
Decadron and Zofran : 2 capsules each, orally, pre-emptively, to control the nausea that’s cause by Avastin
Avastin 320 mg , IV
Leucovorin 704 mg, IV
Oxaliplatin 150 mg, IV
5 FU (Fluorouracil) bolus *
5 FU (Fluorouracil) 4224 mg, IV /46 hours **
*A bolus is a single dose of a drug or other medicinal preparation given all at once.
**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!).
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).
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-1monoclonal 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.
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 preparing the prescribed drugs?), 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.
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.
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.
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.
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 parlour 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, 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, 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.
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.
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).
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.
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.
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.”
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…
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.
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.
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.
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.
It’s among these that I choose to stand.
“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?”
1. Looking at your face close up in a mirror, like when you’re putting on makeup, you expect to see something in your eyes, or maybe a change in your skin, but really all you see is the unadulterated, adulterated you. The eyes that look back are knowing. And that makes you feel estranged from yourself, and maybe also sad.
2. You are as fetching and as fully You as you were on any preceding day.
3. Remember that no one else can tell. Cancer has no smell (to humans), no sound. Cancer is part of the person you’ve always been.
4. Your life HAS changed its track. Your relationship with time, your lifespan, is no longer conceptual—not just something “out there” that eventually runs out on everyone. Your horizon is different than everyone else’s (or at least, that’s how you feel, because you know nothing of most other people’s lives but you’ve just learned a lot more about your own). You think of them as looking far ahead, believing, as they should, that they will not die of the cancer that multiplies inside you, but of something else. They believe they’ll be spared, and why not? You did. You hoped. But cancer has torn a whole bunch of pages off your life’s calendar, and you don’t know how many years, or months or even days…
5. You shouldn’t hide your illness from the world. Cancer, like most profoundly life-altering experiences—losing your job, separating or divorcing, the death of a child, parent, spouse, or friend—is an extraordinary filter. You fear the effects of sharing, and you’re wrong. Your suffering is meaningful not just to yourself, but to others. Cancer gives those who love you, who care about you, who just simply like you—even strangers whose empathy response cannot be helped—an opportunity to show love, to give reassurance, to nurture, to feel close to you, to feel the most truthful emotions of life: fear, sadness, insecurity, vulnerability, need, gratitude, intimacy, loneliness and most of all connection.
6. Don’t walk around feeling sick because you’ve learned that you’re sick. You’ve likely been this way for a while (in my case, probably for years). Shake off this self-conditioning. Remember the insane, hectic, busy, active life you led just weeks ago? Well, you’re the same person who did all that. You have lots of vital energy and if you’re not in any kind of significant pain or distress, then the only thing that has changed is your awareness.
7. Don’t deny a single feeling you might have. I’m pretty sure that will only hurt more, and I’m convinced that each is appropriate. You’ll find yourself ambushed by sadness especially—a tight throat full of tears and pain that catches you in a manner that seems random, but which is often linked to flashes of true insight. Like when you hear people speak of travel plans and sense that this may now be forever beyond your reach; or when a discussion’s taking place about which quality of paint to use in the bedrooms of your new house and you realize that you will perhaps be gone long before the paint loses its glow, so who cares, and what does it matter? ; or when at day’s end, or maybe in the quiet of the house in the morning before anyone has awoken, you live intensely alone with the painful knowledge of your cancer, and resist it just a split second, wanting to disappear into the magical thinking that could make the fearful, difficult future go away and turn everything back to what it was.
8. Train your mind to smile, precisely at such moments. Train your mouth to turn its corners up. Think warm thoughts. Think about gratitude. Think about everything, everyone you have NOW.
This blog is one of my favourite places to come to, but you wouldn’t know it in recent months, would you? I’m sorry about that.
I find myself in a corner—not of my making and certainly not of yours. Your presence out there creates a vast space. It’s a place where so many things seem possible.
But I’m so blocked, it’s awful. In BREAKING OPEN THE SKY, I told you parts of the story, but I know now that I have to tell some of the rest of it, or forsake coming to REEF, because I find myself unable to write anything else to you until I do. Because I’m all of a piece.
There’s an elephant in this room I share with you that sits alongside everything you know about me so far and about how I see the world. Elephant really is the right metaphor, because once in your life, it overwhelms everything else—at least at first.
What you need to know—in as few details as possible—which is coincident with my moving away to a new place and separating from my husband, is the fact that I have cancer, officially diagnosed only a few weeks ago, though of course, I’ve felt that something was wrong with my body far longer than that. Two weeks isn’t much time, and yet still, I feel that I’ve travelled a great distance since then.
The diagnosis is very serious. There can be no pretence that my very life isn’t at stake. And at the same time, there’s an abundance of hope. The nuts and bolts of my situation are that in a few days, I’ll be scanned and MRI’d and checked out in every way possible; that once my cancer has been “staged” (once we know how advanced it is), I’ll start weeks of radiation treatment; then I’ll be operated on and then, perhaps, receive chemo, although that’s still only a possibility (one that I won’t even think about until I have to).
Written out on paper, this looks bleak as hell. But it isn’t. Know this, because it matters. Know that I’m being treated in one of the best medical centres in the world for my illness. Know that the surgeon (a brilliant woman and extraordinary human being) I met just 10 days ago looked at me with the truest, most direct gaze and said that we would be heading toward curing my cancer. Know that she said this with genuine confidence and optimism. Know that the blood work that came back two days ago was very encouraging. Know that aside from the symptoms of my illness, I show no other signs of ill health, and look pretty great.
There. That’s the surface of this experience. It’s the generic. But beneath it is the very personal narrative of living with illness—with this particular illness. I don’t propose to turn REEF into a cancer diary, but I can’t ignore it either as it has, in important ways, hijacked my life.
During the first moments and days after the diagnosis was delivered by the gastroenterologist, each hour was about bouncing along waves: some of emotion, some of shock. Her face (yes, I’ve been treated by two female doctors so far) was so serious—deadly serious, really. I was with my son Simon and with my husband in her office, and she frightened us with her intensity—with the urgency of her directives.
My thoughts and feelings that overrode everything else at that time were of tremendous regret—at having neglected myself, foolishly, stupidly, for so long—and painful guilt, of the kind that comes from the implacable truth that what is hurting me is also already leaching into the lives of the people who love me most, and causing them suffering. These combined to create a deep sadness that threatened to erase every other consideration…for a while.
What was absent, what IS absent, is shame and embarrassment. Though I now carry the awareness of my cancer with me every second, I don’t feel tainted by it. This comes as a great surprise to me. I wrote to a dear friend earlier this week that it seems that whatever self-pity or squeamishness or revulsion I might have felt about being sick with cancer when I was a young woman, is gone. I don’t even think of the tumour, the illness, as something alien. These cells were produced by my body, and they are part of me for now. Just as my gall-bladder malfunctioned for years, so are these cells malfunctioning and wounding me now.
I’ve often seen people respond to their diagnosis of cancer with an immediate, overwhelming desire to get it out of their body as soon as possible, as though the very thought of it makes their skin crawl. But I’m surprised to realize that I don’t feel quite this way. I will be happy when the mechanics of my digestion are able to resume more normal functioning, but I don’t feel that I’m living with an invader (though I fully understand the meaning of metastasis). I’m not sure whether this is a good thing or a bad thing, but I feel less anxious, which helps.
The diagnosis of this cancer swept all of the scribbles off my agenda. I will not be able to work for a year. This is a certainty. Having to cancel classes, knowing that I will not have the richness of adult education and the joy of daily contact with my students in my life for at least a year, is a loss that I will feel deeply. I do already. There will only be targeted, fixed dates in my agenda during the next few months: the dates of treatments and tests, and of course the date of our move, July 5th. After that, all of the radiation treatment dates will be blocked. And then the date of surgery. These are the new signposts of my life. These are the brass tacks.
But already, so much has filled these agenda hours, each symbolic rectangle of time has been coloured in hues of green, blue, red, white and everything in between. These are the shades of love that have illuminated the past weeks. I have been at the receiving end of an outpouring of love and support—from my sons, husband, family, friends, students and neighbours— such as I never thought possible. Understand that, as always, this is everything. Know that love and support provide the alchemy that changes pain and fear and pessimism into acceptance and hope. Know that it matters. And know that right here, right now, it’s why I feel happy. Apprehensive, concerned, shaken, fragile, but genuinely happy to be alive, and fortunate, despite recent events.
About this video: Shot this morning, such a singularly gorgeous morning: even the sun feels upstaged.
The leaves speak and the birds answer.
(yes, that’s the sun pushing up off the horizon, flickering)
I’ve reminded myself and others that the “diagnosed” me is the same person who packed 250 boxes (with help!) and got this house ready for sale at super-speed just a few months ago while teaching full-time, and did all of those other things that have made up my life for years…while sick with cancer. As my surgeon said to me: cancer and I have likely been roommates for 5-10 years. It’s good to remember this. We walk with shadow every day: we’re simply made to look towards the light.
My cancer has reminded me of a book I read a few years ago, written by Gabor Maté, a palliative care specialist, psychotherapist, and caregiver for people who are living on the street, titled When the Body Says No. It came to mind almost the second I heard that I was seriously sick. It explores “the intimate connection between mind, body, and spirit through life stories and intimate interviews with dozens of people who have lived, died, and sometimes overcome chronic illnesses”. It speaks of “the cancer personality”.
There’s a deep lesson for me hinted at in the pages of Maté’s book. It’s a lesson I had already begun learning these last few years (a bit late) about self-love; about boundaries; about accepting one’s value as a human being; about the limits of what can be absorbed into a body; and finally, about the fact that receiving is the crucial concomitant of giving.
On June 6th, when we got home from the gastroenterologist’s, my son Christian sat with me right here at the dining room table, and, with the loveliest smile on his face, and looking right into my eyes said:
“Well, Mum, this is the moment.”
And when I said: “What moment?”
He replied: “The moment when every bit of love you’ve ever given; every kindness; every soothing kiss or hug; every act of patience and presence…this is when it all comes back to you tenfold.”
Until last Tuesday, I hadn’t written a word in two months; hadn’t posted anything here on REEF since February 10th. But the time has come. Except that I’m all jammed up, very much in I-don’t-know-where-to-begin territory.
In part, this is because REEF isn’t a diary. Though it’s deeply personal, I mean for it to be something that extends beyond me—always beyond. But these past months have been the culmination of a very personal odyssey.
Not everything written should be shared, and so I sit here feeling the push to write and the reflex to hold back. It doesn’t sit well with me.
“I see myself as an emotional writer, and believe that my writing works best and reaches my reader more truthfully when I’m able to draw from the emotional climate of my life at any given moment to help me make sense of my thoughts and concerns—which seems like a huge contradiction given that I’ve been told many times that I’m too analytical (my osteopath constantly scolds me for being too much “up inside my head”!). “
I’m happy I came up with this for Leslie, because I think it just may be true. It explains what happens when emotional reality overwhelms the space inside me and my ability to step back. What happens is silence.
Here’s what I’m willing to share—what’s necessary, to make way for the rest.
In the last five months, my husband and I have accepted that we must separate, after thirty-seven years of marriage and our entire adult lives together. Is this irrevocable? We don’t know. Time will tell. There is still deep and abiding love between us.
This is an outcome that was years in the making, of course, and by late last fall, we could both see the fork in the road ahead. No matter what the future holds for us, this decision means a series of endings. Life as we’ve lived it for three and half decades has come to an end. Our time in this house—our first and only house—is almost over. Life as Michelle et Sylvain, which has been all we’ve known since I was seventeen and he, nineteen and a half, will soon cease.
And so, over the past five months, we’ve ridden an emotional roller coaster whose ups, downs, frights, lurches and dramas belong to us alone.
You don’t have to know the details of our life together and the places where we went wrong, the pain and anxiety that follows us into each new day, to understand that in our small lives, separation has set off a seismic shift.
I’ve not been writing because each day, for so many months, has been weighed down by the implacable fact of ongoing deconstruction, and the fullness of it, that has kept me saturated in an anxious state of emotion, of watchfulness, and of wanting to salvage as much as possible.
And yet, on our families’ trees, my husband and I have helped grow new branches—three living sons and two grandchildren so far: new connections that will continue to grow together and also sprout outward. There’s no stopping this thing we started in adolescence.
I’ve not written because in addition to my full-time teaching, my husband and I, with the help of our sons, have put ourselves through the unforgiving, almost clinical undertaking of preparing our house for sale: what, in the business, is referred to as “staging” our house.
It’s a process that took us about six weeks (I don’t know if that’s a world record but it feels like it should be). Working together, we filled over two-hundred boxes with all of the stuff (books, mostly) that we want to bring into the next phase of our lives. They now sit in a storage unit. On hold. We threw out so much that we had to call the city to send a garbage truck over. My husband repainted rooms and fixed the small broken things that unhappiness had caused him, us, to neglect and let go for years.
We transformed our house into a series of clean, clear spaces from which we were as absent as possible. This process of staging, of excising yourself from your own home, is exhausting, demoralizing, cleansing and…therapeutic. With our sons’ help, my husband and I unburied ourselves.
And then our house went on the market. And sold almost overnight.
A young couple will soon make it theirs. They’ll say: It’s ours, but just like us, and the three families who lived here before us, they’re just passing through, their ownership of the property one of civilization’s most entrenched delusions.
They say they loved it from the moment they saw it. I learned that they came twice in one day to see it: once in the morning, then again in late afternoon. They wrote us a letter to say that it’s a house that they can grow into and grow old together in; that they love the natural light that fills it; that from the moment they walked through the front door, it felt like home to them. They say it will make them happy.
Since then, I’ve found it easier to let go of this cozy house that, in truth, was filled with happiness too. I look outward, and so does my husband. Our sights are on the horizon. Like everything else in the Universe, we’re on a trajectory taking us away from where we are now.
“We are not trapped or locked up in these bones. No, no. We are free to change. And love changes us. And if we can love one another, we can break open the sky.”
― Walter Mosley, Blue Light
“You’re always you, and that don’t change, and you’re always changing, and there’s nothing you can do about it.”
― Neil Gaiman, The Graveyard Book
From Poets.org, I receive in my email Inbox, every morning, a poem. It’s such a simple thing to subscribe to.
What I know of poets and poetry is scant, and the luxury of these daily deposits is a much greater pleasure than I expected . The poems I receive are sometimes all angles and sharp edges. Some are cryptic and impenetrable to me. Sometimes, they annoy me and I send them to a small, merciless death in my Trash. There are days when a concept or an emotion in one of these poems grabs me by the throat for reasons I cannot explain—perhaps on another day, it would have passed me by—and finds its way into me. Sometimes I know exactly why I do, or don’t, like the poem. In either case, the possibility of such a visceral, immediate response is bracing.
This is the one I was sent this morning. I can share it because it’s part of the public domain. It’s so short! How could it have lifted me so easily? Well, it did.
Perhaps it was the lovely trinity of “time and change and sorrow”: three words to define life itself.
Or the fact that one’s heart is “the entrance-place of wonders”…
It doesn’t matter. It moved me to post it here. Enjoy, and do visit the Poets.org website.
I am glad daylong for the gift of song,
For time and change and sorrow;
For the sunset wings and the world-end things
Which hang on the edge of to-morrow.
I am glad for my heart whose gates apart
Are the entrance-place of wonders,
Where dreams come in from the rush and din
Like sheep from the rains and thunders.
Translation: That’s the [so-called] artist’s life.
I’ve heard this expression interjected into conversations for as long as I can recall, and like so many sayings, its meaning is slippery. In my translation of it, I added “so-called”, tentatively. C’est ça la vie d’artiste isn’t a completely innocent turn of phrase. There can be a little bit of Shakespeare’s salad daysin it: hints of youthful idealism and inexperience minus, alas, the connotation of heyday. Usually though, it falls under the pall of “so-called”: the implication that la vie d’artiste is more pretense, posturing and bohemian conceit than it is an authentic way of life.
I recently stumbled upon Léo Ferre’s “La vie d’artiste”, a sad song about disenchantment and love gone wrong under the pressures of struggling to live when making ends meet is a daily grind, and it occurred to me that I had a bit of all of those elements on my mind when my son Christian arrived home last Thursday night.
Christian’s return sometime after 11 pm capped one hell of a day. Whatever else the artist’s life may be, it isn’t boring. On the program that Thursday, he was booked first at the McGill Simulation Centre, where he’s been working year-round as an actor since early 2016, slipping into the skin of every imaginable patient or person the job requires, and picking up more and more hours. Yesterday, Christian was again playing Pat, a young man with cerebral palsy desperate to maintain an autonomous life. He’s one of Christian’s favourite characters to play.
That work done, he was off immediately, with little time to spare, to an old church in Westmounta bus ride away, where he’s been performing in Antigone for over a week and still has a couple to go. The Greek tragedy is this year’s production by Raise the Stakes Theatre, a classical theatre ensemble with a shoestring budget whose limits are absolutely eclipsed by its passionate approach to up-close-and-personal theatre. But there’s no escaping the hard truth that no one does theatre to get rich. And yet still, it was possible to assemble fifteen actors, four musicians and a production team made up of a half dozen creative and dedicated people, and draw them to rehearsals as often as six times a week, from 6 to 10 pm—the quiet hours in the beautiful old church.
And this they did for a month of rehearsals: out of passion, out of commitment, motivated by a longing to create, collaborate and perform; out of a need that I think I understand, and also, simply, out of personal loyalty to the director, and/or to each other.
But all of those extra hours that punctuate long work days add up, and not long after the play’s opening, Christian mentioned an infection spreading through the ranks (“a plague” was actually what he called it), causing fever, congestion and, worst of all, laryngitis. By Wednesday night, two actors, members of the Greek Chorus, were down for the count, leaving their mates, including Christian, scrambling to divide up their lines, drop some, and reconfigure the blocking of the affected scenes, all within hours of the performance. Then their director was hit with flu symptoms. And it began to feel like they’d all been cast, unwittingly, in a re-enactment of And Then There Were None. Regroup, recover, perform.
I’m not making light of their predicament. I’m flabbergasted. What drives them all? It isn’t the money: there’s none, which is the usual case with small theatre companies. The costs of mounting a production, the time invested, the long rehearsal period and the fact that money only comes in with each performance at the end of a very long cycle of planning and preparation: these test the elasticity of the budget to its limits.
What drives them is something so strong that it interferes with self-preservation.
That’s the thing about theatre: it’s alive. Whether Christian has transformed himself into a patient for some future medical doctor to learn from, repeating his performance as many times as necessary on any given day; or whether he has put himself out there on the altar of an old church on a weekday evening to bring to life ancient Greece with his fellow actors, he is embracing la vie d’artiste, in all of its poorly remunerated, often thankless, electrifying, anxiety-inducing, improvisational, collaborative and soul-expanding glory.
“Most of the truly remarkable experiences I’ve had in theatre have filled me with uncertainty and disorientation.”
― Anne Bogart, A Director Prepares: Seven Essays on Art and Theatre
“Movies will make you famous; Television will make you rich; But theatre will make you good.”
― Terrence Mann
It included a snow storm and horrible driving conditions;
cold and biting wind;
teaching contracts that have tilted to the bad side of too many;
a constant cough that appears to be caused by allergies to what’s in the air at one of the places where I teach;
sad or worrying news about people I care about;
more sad or worrying news about them;
a heaviness I carry around, which is the weight of what I cannot change or resolve (at this moment in my life, it’s as dense as gold);
and a sense of being trapped in a power crusher, with the walls of time closing in and no way to stop them. No room (not for escape, but for breath and perspective and space to maneuver).
At such times, I walk about with the feeling that I could easily cry (and wouldn’t that feel good?), and that I am inadequate to the task of being a good friend, a good daughter, a good sister, a good mother, a good teacher, wife, neighbour, human being …
While I tangled with all of these, the sun rose every morning, and my life–the single miracle from which everything flows—never failed in its task of moving me along.
My sister, hip deep in her own struggles, remembered to enquire about the wellbeing of a friend I worry about;
A son cooked dinner for me to come home to late in the day, once, and then again the next evening. His alchemical actions transformed food into love, meals into sharing, and weariness into wellbeing.
(How do any of us survive loneliness?)
A friend reached out to me and found my hand, though I couldn’t hold hers nearly long enough.
An afternoon and evening spent with my granddaughter and grandson yesterday took me sailing on a true-blue ocean of simple, hopeful joy. It saw their parents off to a Christmas party and the rest of us, my other sons and husband, together, making merry ourselves.
A first son fetched us a meal of fried, roasted and sweet foods that left us all with greasy fingers and feelings of satisfaction. He choreographed the day’s end: stories, baths, bedtime without mama and papa.
As the house went quiet, my sons and I—they with their extraordinary niece and I with my sweet-hearted grandson—lay in the dark next to the small and trusting bodies of these children who are the channels of all of life’s promises and reminders that we cannot fail them, and listened to them breathe in the dark, sometimes moaning softly, sometimes crying out as the day’s tiny storms caught up with them, entering their dreams.
Danielle, Christian, Louise, Simon, Jeremy, Anne, Penelope and Graeme and Sylvain, I love you. Thank you.
4 am wake-up + 2-hour bus-ride to the airstrip + 6-hour flight to Mirabel airport (the forlorn and once beautiful place where The Terminalwas shot) + 45-minute bus ride to Pierre-Elliott-Trudeau airport (Montreal) = HOME
Christian was the luckiest of the hundred people also leaving the mining installation and port to travel with him that day, because he had reached his destination while most still had flights to catch, taking them due West (to British Columbia) and due East (to Newfoundland) —and points in between—for thousands of kilometers more. Such is the vastness of Canada. And such is the pull of home, because almost all of these men (and Geraldine, the only woman on board) will make the same trip in reverse, in two weeks, beginning a new rotation.
The tides of the lives of these men are set by the rotations of a mining installation: two weeks on site, two weeks home. Only the Moon does things with more inevitability. But the gravity of Christian’s life and his Captain’s—the port captain—was governed by the activity at the port: day one of their stay marked its opening for the brief, ice-reduced summer, and their final day was marked by the ice-congested port’s closing. For a hundred days, they stayed put, watching people come and go. The only two to do so.
No matter what he was told by those who employed him and the handful of people who had actually been there previously for short stays; no matter what Christian had imagined of Milne Inlet, whatever wild and barren landscape and hardscrabble life he had fashioned in his mind, nothing could have prepared him for the absolute immersive experience he volunteered for.
Latin-infused words best encapsulate Christian’s hundred-day stay at Milne Inlet: deprivation, seclusion, sequestration, isolation, alienation and even, at times, incarceration. All words that Christian and his Captain would agree upon. And also, austerity.
Christian’s daily routine at the mining camp at Milne Inlet consisted of moving between a small room with a bed, a TV, a closet and a shower (and a window covered over in aluminum foil to keep out the perpetual summer sun), to the galley for food, to the truck that he drove to the port, to the trailer box that was the office in which he worked days with, for the most part, no discernible beginning or end because he was always required to be available. He certainly wasn’t the most important person at the port—his Captain, the stevedores and many other people did work that was critical and shouldered heavy responsibilities, but Christian was the only person at the Inlet who had no backup—not even for a couple of hours. Ever.
Christian is eloquent, and a wonderful, often hilarious writer, and he sent me regular, detailed two-page letters attached to his emails, with meticulous discipline, and which I then shared with friends and family at his request. These opened up his world to us, and allowed us to catch a glimpse of a life so withdrawn from the world—at once so exotic, eccentric and bare-bones—that it felt fictional.
On the day he arrived home, my understanding of his experience changed. It started the moment I saw his face as he stood, eyes locked on me, in the arrivals area at the airport. It was him. Of course it was him. But across his face, which is so distinctive, there was the shadow of loneliness and bone-weariness and also, I think, a mixture of joyous relief and disorientation. And something deeper and more private. Estrangement sickness. Like the astronauts of the international space station, he was experiencing the shock of re-entry.
It was hard for him to absorb the fact that his adventure was done. To believe that it was over. And I realised that he was overwhelmed by the people, the sounds, the colours and the smells of his home.
When astronauts return to Earth after months on the space station, a lot is made of their physical rehab and the effects on the body of their prolonged stay in orbit. The battle to regain as much of their previous physical form as possible is front and centre, and we hear far less about their mental struggles.
Christian has told me that the Arctic Circle is a truly xeno environment: in summer, it appears to be as barren as Mars, with its reddish soil and absence of vegetation and only the odd arctic fox and polar bear moving about. There’s no birdsong. There are only ravens the size of turkeys who lurk in ominous silence. In winter, which lasts three seasons—it was -25 Celsius when Christian left— the Arctic becomes itself, splashing extraordinary hues of white, grey, blue and turquoise over the waters, the sky and the ground. At the Milne Inlet settlement, besides the mechanical noises of trucks and generators, tug boats and the iron ore loader, there is very little natural sound—at least to the ears of visitors. Neither can you witness the aurora borealis; the Inlet is simply too far north. When the sun eventually begins to set again and night falls, it brings a darkness as black as ink; an impenetrable curtain. Christian never saw a single starry sky, and we still don’t understand why.
This past week, I’ve observed many things in Christian. On his first night home, at the end of a long and rewarding day, Christian said to me that he was reluctant to go to bed, that he felt anxious. When I asked him why, he said that he was afraid that he would wake up in Baffinland. I think that Edmond Dantes probably felt the same way after he escaped the Château d’If. This literary reference is meant to make you smile, but the photo below, of the scrap of paper Christian held on to from Day One, and on which he marked the days till his Arctic stay was over, suggests that there’s as much of fact as of fiction in his fluttering feelings.
And then, just five days after his return, he made plans to go downtown to return the company laptop he’d brought back with him. As he prepared to walk to the train station, he told me how uncomfortable and antsy he was, how anxious the thought of going into such a developed, populated place made him feel. The hubbub. The crowds. All of it. And I realised the extent to which Christian’s experience had altered him.
All of the days and nights in a compound where straying from the makeshift road could mean death at the paws of a polar bear; all of those hours spent filling out prodigious amounts of paperwork, listening to the conversations of mariners; all of that time trapped in a place that didn’t provide enough bandwidth to Facetime or Skype with loved ones; each and every one of those days eating fish, meat and frozen vegetables; the sheer weight and repetitiveness of it all had forced Christian inward, into his deepest reserves.
A week has now passed since his return, and Christian’s skittishness has faded very gradually as all of the life he has here flows back to him, filling the lonely places that had opened up inside him. He has returned to the garden of earthly delights that is so familiar to him; he is back with the people he loves and the life he wants and hopes to live.
I’ll never know just how altered he was by his hundred days at Milne Inlet: perhaps he misses the hyperreal colours of the water and skies, the unique tang of brackish water, and the stories of the men, especially the seamen who arrived with their ships.
It has also struck me and Christian (through whose eyes I’ve come to see so much) how wide is the gap between the indigenous people of the Canadian Arctic, theInuit, and everyone else. I think it’s what fascinated Christian the most, observing the coming and going of the Inuit men hired by the mining company and talking with them in the galley at every opportunity. Their experience of the world, their daily life is the product of a matrix so radically different from everyone else’s that in some ways, it’s as though we are from different planets.
And one wonders how the gap between the two worlds can ever be bridged, and whether it should be. To have grown up in a barren, beautiful, unforgiving, extreme habitat of vast spaces and limited sounds, in almost endless cold and opaque darkness at nightfall, where “close by” means a two-day boat ride to the next settlement and time unfolds without increments…These are realities that Christian glimpsed just long enough to understand what many of his Inuit companions must feel when they enter his world, how their suffering must be the reverse of his, and include the pain of immersion, congestion, crowds and clamour; the nonsense and indecipherability of it all ; and the absence of solitude, quiet, immense expanses and kin. Their own estrangement sickness.
“Not for the first time, Peter thought about how much of our lives we spend sequestered inside small patches of electric brightness, blind to everything beyond the reach of those fragile bulbs.” ― Michel Faber, The Book of Strange New Things
Last evening, I attended a concert in a perfectly renovated hundred-and-fifty-year-old church in my home town. We sat at ninety-degree angles on stiff wood benches, huddled together inside that beautiful and ornate old building listening to a musical group that calls itself LaNef.
The men on stage (on the altar), seven in all, were there to perform sea songs and shanties in the purest tradition of the sailors of the Atlantic (with the exception of the song Rolling Down to Old Maui).
In the evening’s program, I read: “Our goal here tonight is to present these songs, not only as they have always been sung, but also as music to be listened to. It is no small challenge to drag these pieces, tar-stained and tattered, into the concert hall. We hope to give you something new to listen to in these pieces.”
They sure did. Reverberating off the wooden walls and arches of an old church, those songs take possession of you, swirl around inside your head and chest and squeeze your heart. And you find yourself awash in feelings and images from a world of groaning wooden ships and motley crews of men, and the cold, grey, salty sea with waves crashing and rolling, and gales blowing mercilessly, and the men chilled to the bone and hanging on for dear life.
Those seven men up on the stage sang and played their hearts out, and what they sang was beautiful, funny and sometimes tender but of course it was also about the punishing harshness of being at sea and living that life—a thousand years ago, and today. Which is why their songs made me laugh and made me want to cry as they transported me away from my own, comfortable world.
It was easy for me to let go and follow them, because a hidden part of me has been living among large cargo ships and frosty air for months now. First, there’s been my son Jeremy’s life with his new employer: a large ocean-going dry-bulk shipping company, and his frequent travels to board and inspect his company’s fleet. Last July, Jeremy opened an unforeseen door in his brother Christian’s life when he made it possible for Christian to take a three-month contract working as the Boarding Clerk on behalf of the same company, at the port built by its business partner, a corporation that mines iron ore in Milne Inlet, Baffin Island, Canada.
Before leaving for his hundred-day stint at the “sixth northernmost community on Earth” (his words), Christian spent a day with Jeremy, inspecting a ship berthed here in Quebec, meeting the mostly Indian crew, and slowly catching the scent of the distinctive culture and language of the life of mariners. This hundred-day Arctic contract was an opportunity to make some serious money—the life of a young actor and writer is precarious—and seemed like it would be a hell of an adventure.
Christian left for Milne Inlet on July 19th, and arrived at his temporary new home —well within the Arctic Circle and separated from Greenland on its northern side by Baffin Bay—on the 20th. Nothing he had done previously to get himself ready (buying lots of extra warm clothes, a pair of indestructible-waterproof-extreme-cold-resistant-protective-steel-capped-boots, a good camera, and several pairs of sunglasses for the days of endless sunlight) made any kind of dent in the reality of living in an Arctic mining camp.
None of it made Christian a sailor. He’s spent these last three months of his life at the mining port, working alongside his superior, Captain P, a veteran seaman, hardened by years of often thankless and even dangerous work and crushing responsibility; alpha down to his bone marrow and surefooted whatever the conditions, both inside and outside the port’s office.
Christian won’t have become a sailor, because the extent of his travel upon the surface of the water was the distance between the tugboats he sailed almost daily and the ships at anchor further off in the Inlet that he had to board in order to begin the endless amounts of paperwork that were his responsibility.
But he will have smelled the brackish water of the inlet daily, and grown fond of it. He’ll have discovered that he’s as steady as any member of any deck crew when it comes to climbing the gangway to board a cargo ship, and looked forward to each and every visit. On the worst, choppy, heavy, restless days at Milne Inlet, he’ll have found his sea legs aboard the tossing and tilting tugboat, and been proud of it. And he will have grown to admire the mariners he had the honour of meeting with every boarding.
When he finally does arrive back home after a hundred days of endless work and ruined circadian rhythms, having lived with miners and truckers, cooks, cleaners and stevedores, engineers and technicians—all male and all constantly counting off the days till their two-week rotations ended and they could head home for an equal number of days off— Christian, standing by and watching them come and go while he stayed put, will have peered, as through a porthole, into the lives of the men on each and every ship that entered Milne Inlet, duty bound to fill her holds with iron ore, their destinies linked to their ship’s, all of them a long, long way from home, and perhaps only a few weeks into a six or ten-month round-trip.
He may feel a kinship with the Russian, Indian, Finnish and Filipino seamen whose lives intersected with his at the frigid top of the world.
I think if Christian had been with me at the concert last night, he, perhaps more than anyone else in the church, would have been moved by the tar-stained and tattered sea songs and shanties of his brothers in spirit.