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.