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