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.