PART OF THE THIS IS THE MOMENT SERIES.
August 19th, 2019
I’m alone this morning. Christian now lives with Vickie, at her place in Verdun, and Simon is easing his way back to work at John Abbott College. That leaves me here, in a quiet house for a few days at least.
The sky is backlit that strange yellowy tint that is a harbinger of thunder showers. The smoke tree across the street looks like it’s glowing.
I awoke at 3:30 this morning. It happens sometimes, usually when I’ve gone to bed early. It isn’t a problem unless it’s on one of the nights before I have to go to the CHUM. Then it can make me a bit anxious and worried that for some inexplicable reason I’ll sleep in and miss my train. Like tomorrow, when I have a CT-Scan scheduled, or something added to my usual alternating weeks of “peace and normalcy” vs “chemo” (which requires me to be at the CHUM two days, and then head to the clinic in Rigaud—a 15 minute drive from here—on the Friday, to be unplugged from my Fluorouracil (5 FU) infuser).
It’s become quite a grind.
When I woke up this morning, in the predawn hours, my thoughts went—as they’ve been doing for a few weeks now—to the reality that this Thursday, August 22nd, which is Christian’s 28th birthday, will also mark the 1st anniversary of my bi-weekly chemotherapy treatments. It’s a jarring juxtaposition to say the least, but it’s certainly easy to remember and, come to think of it, the fact that it will always evoke my lovely Christian is gentling.
Our human minds are set for patterns and cycles and chronologies, which are useful for making sense of the life teeming around us. We understand the need to become accustomed to beginnings and ends. And change. And the evolution and devolution of things (well, most of us do). And that’s why, inside my head, there’s an invisible wall with chalk marks like those the Count of Monte Cristo scratched out in the Château d’If.
Those marks, that counting of days, is of course one of the devices that helps me cope with my stage 4 cancer and its treatment. I was put on this uncompromising, hopeful, difficult, medicalized path last year. As you know, there was real serendipity involved in my being chosen for this research protocol/clinical trial.
I’m not sure what the tone of this missive to you will end up being. I’m not feeling sad. But I’m feeling one year wiser. There are so many things I know now that I didn’t then, despite watching both my parents and so many others go through cancer treatment.
That’s because there’s the visible journey, and there’s the inner journey.
How strange! As I sat writing these last sentences, a Mary Gaitskill quote from my We Croak feed just pinged on my phone. It states:
“To be human is finally to be a loser, for we are fated to lose our carefully constructed sense of self, our physical strength, our health, our precious dignity, and finally our lives. A refusal to tolerate this reality is a refusal to tolerate life, and art based on the empowering message and positive image is just such a refusal.”
It’s a strange coincidence that places before my eyes a (partial) reformulation of what I’m trying to get at, just as I’m struggling to do it, and at the same time, brands me with weakness as a writer if I tip toward a positive message…
Well, Mary Gaitskill and I are looking through a similar lens this morning, though our predispositions and perspectives differ.
If I understand her correctly, Mary Gaitskill is saying that death is ever present; that to be alive is to live with the daily encroachment of the finality of death, in the form of constant, incremental loss.
Of course that’s true, but also, not the whole story.
During this past year, I’ve clung to the gift of a clinical drug trial because it WAS a gift. It lifted me out of utter hopelessness and the terrible, threatening inevitability of the painful progression of my disease. It helped me to see and feel something other than fear and grief. It offered reprieve. It lifted my eyes to a new horizon: much shorter, and somehow hazy and impossible to visualize—or maybe that’s only because in all likelihood, it’s just another, less frightening path to an earlier death than I had imagined for my life. It sprinkled all of it with the tiniest amount of irrational hope—of the kind that allows a thin voice inside my head to whisper every now and then: Maybe you’ll win the cancer lottery and your tumours will just disappear or halt in their tracks.
I usually walk myself back from those thoughts, because though they’re necessary, they can also steer me too far from the here and now.
And that’s what this anniversary is really about. Negotiating the here and now. Every second of every day. Because I am aware of each passing second, or at least, more aware than most people, though I DO escape the tick-tock now and then and it is salutary (Mary Gaitskill be damned).
I wake up in the morning with my eyes glued shut by a gel that does what my tear ducts can no longer do. I remove the gloves that cover my hands upon which I slather a balm every night, to slow down the deterioration of my skin and nails. I observe the latter, which look like they may be headed towards disappearing altogether, as my cuticles encroach on the nails, which are frail and sickly and cracked and beginning to separate from the nail bed, producing a u-shaped white area on the top part of each finger nail. I often wake up stiff and sore and stumble to the washroom like an octogenarian with bad hips and feet. I take two pills in the morning and then wait 30 minutes before I can have a cup of tea (otherwise I can get heartburn). Everything I do in the kitchen, from starting the coffee maker to buttering toast hurts my hands. My nose is coated with a thick layer of hardened snot because my mucus membranes are working overtime to protect my sinuses from the fate my hands and feet are succumbing to. When the snot fails, I have nosebleeds (which can be triggered simply by standing up). My feet, ankles and lower shins are weirdly painful, stiff and numb at the same time. The inside of my mouth is red and hypersensitive (most of these issues are caused by the damage done by chemo to my epithelial cells). Although my eyelashes have grown back (though they’re thinner), I no longer wear mascara because I have to put drops in my eyes every two hours or else they burn and I can’t open them in sunlight and my vision gets wonky (again, epithelial issues—my corneas, in this case). No need to add mascara stains to that sexy mess. Last week, I was sick a whole day simply because my gut can’t handle food that has been in the fridge more than a few days (though everyone else enjoyed the chocolate sauce on their ice cream with no repercussions. Sigh). If I drink even an ounce of wine or beer, my hands burn (I still do, a wee bit, every now and then). My new shock of white hair is so soft it feels like petting a bunny rabbit. Last week, while with my grandchildren, I was on my knees assembling two one-hundred-piece puzzles and playing a round of Mouse Trap. Three days later, I noticed a very dark thick scab on the edge of my right knee. Confounded, I showed it to Simon who said: “You did that while kneeling down when you were playing with Penelope and Graeme!”. I’m not sure if I’m more upset that I didn’t even register the sore, or that it happened that way in the first place.
There’s more stuff like this. There’s the time spent going back and forth to the CHUM and to the pharmacy. There’s never knowing which days I’ll have lots of energy and which days I’ll feel frightened by my fragility.
It’s no longer possible to say mind-over-matter and push my body to work and go, go, go! Dinner out may or may not be pleasant; easily digesting it can be hit and miss. Just plain keeping up with the world is a gargantuan task for me. This is the cost of treating my cancer.
I cannot see the far horizon, or if I do, I am no longer in the frame. My children and their children are, though, and that gives meaning—profound meaning—to my here and now.
I had a difficult phone conversation today with someone very close to me. It required me, at the very end, to speak emotional truth that I knew the other person was not prepared to receive. It was very upsetting, stirring up old wounds, old traumas. But what has struck me since is that the pain of that conversation also traced a path directly to truth and to the cost of love.
This is the framework of my inner journey. What it feels like in here. Some days it’s tunnel-like, sometimes dark and cavernous. Other days, it’s like being lit up by fireflies at night. I feel electric and consciously alive in a way I had never previously experienced. That light is what life and love feel like. They illuminate our way. To the end.