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 we 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.”
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-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.
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 making the mixtures?), 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.