TO SLEEP FOR A THOUSAND YEARS: Recent observations from chemo base camp, part 5

Part of the THIS IS THE MOMENT series

October 11th, 2018

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.

Devas, Nicolette Macnamara; Juanita in the Morning; Manchester Art Gallery; http://www.artuk.org/artworks/juanita-in-the-morning-205486

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.

Balmer, Barbara; Domenica; Leicester Arts and Museums Service; http://www.artuk.org/artworks/domenica-81064

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.

Selway, John; ‘As I rode to sleep’ Fern Hill Series; Amgueddfa Cymru – National Museum Wales; http://www.artuk.org/artworks/as-i-rode-to-sleep-fern-hill-series-162254

 

LOVE’S BOOK– Recent observations from chemo base camp, part 4

Part of the THIS IS THE MOMENT series.

October 5th, 2015

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.

 

palmar-plantar erythrodysesthesia in my left hand

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…

John Donne wrote:

Love’s mysteries in souls do grow,
But yet the body is his book.”
(From: The Complete English Poems)

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.

Ramazzotti, Luisa; Body Poem No.7; University of Dundee, Duncan of Jordanstone College Collection; http://www.artuk.org/artworks/body-poem-no-7-91658

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.

Cohen, Harold; Standing Figure; Arts Council Collection; http://www.artuk.org/artworks/standing-figure-63243

– 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.

Brady, Ian; Untitled; Art & Heritage Collections, Robert Gordon University; http://www.artuk.org/artworks/untitled-105264

– 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.” 

John Donne

 

 

 

LAYER BY LAYER, I SURRENDER

Part of the THIS IS THE MOMENT SERIES 

RECENT OBSERVATIONS FROM CHEMO BASE CAMP, PART 3

October 2nd, 2018

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…

Waterhouse, John William; The Lady of Shalott; Tate; http://www.artuk.org/artworks/the-lady-of-shalott-117690

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.

My new wig, looking a little creepy on its “stand”

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.

Palmer, Jean; Head; Manchester Art Gallery; http://www.artuk.org/artworks/head-205760

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.

This morning, after the deliveries.

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.

Layer by layer, I surrender.

 

 

 

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

PART OF THE THIS IS THE MOMENT SERIES

September 20th, 2018

Last Sunday, a full 11 days into my second chemo cycle, when my energy and spirits should have been restored, I tumbled into sadness again. It started in my bedroom, at day’s end, just like the previous time. It wasn’t as easily shaken off. It stayed longer. The next morning, as 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 at John Abbot College this past week). I couldn’t help it, but it didn’t last long, in part because Simon stopped and spoke to me in a way that was immensely helpful—a mixture of empathy and scientific objectivity— and also, I think, because before finally falling asleep on Sunday, I’d had time to do some self-interpreting.

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

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

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

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

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

Graeme’s stuffie

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

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

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

The view from my bed

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

Haircut, in hope of saving it!

 

 

 

 

 

 

 

Receiving chemo , cycle 3

 

 

 

 

 

 

 

 

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

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

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

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

Notes:

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

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

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

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

Simon keeping me company (and correcting tests) 🙂

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

The view from my chair at chemo

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

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

One of the chemotherapy rooms at the CHUM

This is given to me over a 5 to 6-hour period, depending on how efficient the hospital lab is on that day. It’s a massive chemical blow, and some of it, like Oxaliplatin, is really just pure poison. Though I’m called in at 9 am and usually arrive there at 8 am to signal to the pharmacists that I’m present (and can they please get cracking 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.

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

 

THIS IS NOT REALISM

Part of the “THIS IS THE MOMENT” series

September 11, 2018

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I repeat this every night.

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

MY FEAR OF ETERNITY

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

Part of the “THIS IS THE MOMENT” series

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

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

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

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

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

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

My photo: doorstep, Fall 2013

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

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

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

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

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

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

 

 

 

 

 

 

RECENT OBSERVATIONS FROM CHEMO BASECAMP: part 1

Base Camp, Mount Everest

Part of the “This is the Moment” series

September 3rd, 2018

  1. It’s quite possible that chemotherapy requires the stamina and fortitude of an expedition to the summit of Everest

That’s how it strikes me. Chemotherapy is a campaign, a mission whose objective is a cure, or healing, or the prolongation of one’s life, or one last straw of hope held tight. And sometimes, it’s a refusal to acknowledge the end. I think that once it has begun, and for the duration, you leave what you knew to be your life, and set yourself up at the foot of that mountain that you must climb, which, like all those books and novels I’ve read about mountaineering, becomes base camp: the place where all of the “teams”— in this case, medical, psychological and scientific, as well as hovering, vigilant, mobilized friends and family—that have entered your life.

On Wednesday, August 22nd, I reached base camp: my chemotherapy treatments finally began. Chemo is that thing that I hoped I would never have to experience (at the beginning of my journey at the CHUM, this still seemed possible: Dr. Richard spoke only of radiation and surgery). Alas, it soon became the only way forward for me.

I know that my mum and other loved ones who don’t know all of the medical activity that precedes the first treatments received by a patient enrolled in a research study, probably shouted: Well, it’s about bloody time!  when things got going.

I’m still finding it hard to unpack that first experience of treatment.

Was I stressed? Well, honestly, no. I do have a prescription for Ativan to help me sleep, and I don’t shy away from taking one of those teeny tiny pills as often as I need at bedtime (if developing a dependency on Ativan is the worst thing that happens to me within the next five years, then I shall throw a party in its honour!).

I headed to the CHUM, with both Simon and Christian just a held-hand away, without so much as a drop of caffeine in my system. There was a two-and-a-half-hour delay at the hospital’s pharmacy—where each patient’s list of tailor-made concoctions is prepared— so my treatment only began at 11:30 am.

My blood pressure was taken over and over during the day and was exemplary, with readings like 116/68, 113/67, 120/70…which should tell you something about my stress levels, and a lot more about the care I received from the nurses and the atmosphere in the unit where I was; and about the profoundly soothing and reassuring effects of having my sons right there with me, through all of it.

My protocol requires that 5 different drugs be infused into my body, which took 6 hours this first time, but which may be shortened in the future, if my body shows that it can endure a faster drip of one of the drugs. But before I could leave, a special infuser (which looks a lot like a water-filled balloon inside a baby bottle) was hooked up to me, and I was sent home with it in a fanny-pack—which I wore in front, high on my waist—so that it could drip, drip, drip, drip its contents into my body for 46 more hours (it was removed, when empty, at a local clinic, and my port-a-cath cleaned out).

North Face, Mount Everest

In mountaineering, the higher the summit, the more unpredictable human physiological responses become. As I sat all of those hours on the 15th floor of the Cancérologie department of the CHUM, and watched fellow patients come and go (getting tea or coffee but mostly just using the washroom), I was reminded of the old photographs of the mountaineers of the twentieth century: people like George Mallory and Edmund Hillary and their teams—their wasted faces, their battle-weariness, their refusal to abandon their quest.

George Mallory, circa 1922

 Others observations this week

2. When your life becomes the punchline

While a guest in the home of wonderful friends a few evenings ago, which ended with us all watching the movie Crazy, Stupid Love together, there was a scene in which Steve Carrell’s character has very recently been told by his wife that she wants a divorce. He’s at his work cubicle, looking forlorn and wrecked. His worried colleague drops in to find out what’s wrong and when Carrell’s character tells him, he laughs with relief and says:

Well, at least it’s not cancer !”

I turn to my son, Simon, who’s sitting next to me and say: “This kind of thing seems to happen all the time now.”

3. A lovely friend posts the following question on her Facebook page:

Would you rather have one wish that you could have immediately or three wishes you could have in 10 years?

Most of the people who responded quickly picked the second choice. I simply commented: “Easiest question in the world for me, isn’t it, P?”

Eventually, some commenters had second thoughts, and opted for the first choice. Still, though we live in a world without magical wishes, I’m stunned by other people’s insouciance—by what they take for granted.

Eduardo Lankes, Fog Clouds, 1905