INCHING PAST AN INVISIBLE LINE

 

Illustration by Bianca Bagnarelli

August 1st, 2020 (morning)

Edited voice memo transcription:

“I just stepped out of the shower—it’s Saturday morning—and it was the first one I’ve had since last Wednesday morning. These few days after chemo, when I can’t take a shower because I have to be careful of the infuser that’s hooked to me intravenously through my port-a-cath—these days feel long. Of course I don’t want infection setting into the catheter port, so I’m very watchful. This small device is extremely valuable to me.

I’ve watched battle weary patients in treatment or being prepared for MRI’s and CT-Scans for other long term illnesses who weren’t as lucky as I am, and who are limited to PICC lines, while others—people whose veins are in terrible shape—are simply made to endure the pin cushion treatment, by which I mean being stuck over and over by a nurse doing his or her best to get a needle into a collapsing, shredding or otherwise uncooperative, tired vein. Some close their eyes and resign themselves; some suck in their breath with every jab; some can’t help but make occasional moaning sounds…

When we’re all seated along the wall in the scan waiting space, in our colour-leached hospital nighties that make us all look even more wan and fragile, watching other patients go through the catheter insertion ritual is the only thing to look at. Some days are better than others for us and the staff.

The day after my Wednesday chemo, I really want to wash. I want that chemo/hospital smell and film off my skin. It’s like I’m carrying the miasma of the 15th floor with me, and the best I can do is run a hot bath, lay the fanny pack containing my infuser next to me on the side of the bathtub, pulling the fine, transparent tube attached to the infuser to its full length (about 18 inches) so I have some leeway, and just sit quietly in the blessed water, soaping my hands, legs, stomach…

Ford, Emily; Flying Figure; The Stanley & Audrey Burton Gallery, University of Leeds; http://www.artuk.org/artworks/flying-figure-39069

That’s why, after my infuser has been unhooked on Friday afternoon, it feels so good to shower: to wash from head to toe. While I’m standing under the warm water—it has to be very warm and the shower curtains have to be drawn tight against the tiled wall, with no cool air coming in because otherwise I shiver and I’m uncomfortable—when it’s steamy and I can stay there for a long time and just feel the water streaming over me, I run my hands over my body, my shoulders, arms, and  especially down the sides of my hips, feeling all the sinew there, the ligaments, feeling for muscle—all of it more exposed because I have lost body fat— and looking to see how much muscle loss there is because I just CAN’T be as active as I was and I just CAN’T do the kinds of things that I could do physically, before—and so I rediscover my body and the hidden parts of it—all these areas that you don’t touch otherwise, except when you’re washing yourself or are with a lover (or imagining yourself to be).

In a way, it’s taking stock of my mortality; of the creeping up of the day when I lose my life. And I  wonder how many more days like this I will have,  and if it isn’t easier to have these kinds of thoughts in the summer, when the sun is long in the sky and it’s very bright and beautiful, and I’m surrounded by greenery and flowers and the GARDEN and this lush, natural life around me. Maybe it is.”

Photo by Michelle Payette-Daoust

*****

August 21st, 2020

(Edited voice transcription)

“I woke up last night, as happens more regularly now, because I had to get up and go to the bathroom (this only began when I started treatment, I’m always voiding poison, it seems), and even though it was pitch black, it was probably 5 o’clock in the morning. But no matter what time that happens, I have trouble getting up because I can’t open my eyes. They’re glued shut by the gel drops I put into them every night (and several times during the day). During the night, the drops have time to congeal, and I have to peel my eyes open first, even if only to see in the dark. Last night, my feet hurt from the sudden weight on them as I made my way around my bed, from one bedpost to the next bedpost which is the one closest to the door and then to the bathroom…

And when I got back into my bed, still wearing my ear plugs—a habit I developed during those transitional years when women begin to believe that they’ll never have a full night’s sleep again—and lay in the dark, all I could hear was the sound of my beating heart. In the darkness, there was only me and the thumping that seemed to be right inside my head and also hidden in some dark cavern. I think I put my hand over the left side of my chest, and closed my eyes to turn inward, to feel that acoustic space inside me. Heart, are you damaged? What have these two years done to you? Is the rhythm you’re beating at slower than it should be? Or faster? What have I put you through?How long will you be able to keep this up?

And some time during this quiet listening, another pattern, pulled from recent memory, laid itself over the beats of my heart: it was the sound of the intravenous pumps in the chemotherapy ward that had come to mind. Mechanical, but disturbingly synchronous. .

******

September 1st, 2020

The second anniversary of my first chemo treatment has come and gone, and like every other part of life, one adapts.

My chemotherapy session last Wednesday, August 26th, marked the FIRST TIME IN TWO YEARS that I didn’t receive Nivolumab. I’ve been thinking about metaphors that capture the feeling I have: being in a car without a seatbelt; being in a boat on the sea without a life jacket; betting money I don’t have…Something discomfiting, in any case. For the two years I was taking Nivolumab, I felt protected. It was an illusion, of course, but I was very lucky— it wasn’t disproved.

Last week, when nurse Chantal and I got together for my usual Monday pre-chemo checkup, we both felt it necessary to reach out to each other and to acknowledge that the past two years have meant something. We spoke of it. I offered her a gift; a memento. I let her know how wonderful it would be if I lived long enough to be there when she retires (in 4 years), because that would mean that we could move beyond the boundaries of caregiver/care-receiver—that we could be friends.

It had also become clear that after 8 consecutive months of treatment (my last break was at Christmas), I was worn down and becoming depressed. And that’s why I find myself, at this moment, in the first of 5 weeks of “vacation” from chemo. I will have to go into the CHUM on September 15th for my scheduled CT-Scan, but otherwise, I’m free of the physical battle—if not of the thoughts—of cancer and its treatment.

What do two years of cancer treatment look like?
Well.. they look like:

  • the hundreds of containers filled with medication that was prescribed for me;
  • The dozens of Salinex vaporisers I needed to hydrate my nasal passages and prevent pain and nosebleeds;
  • The half-empty containers with the remnants of prescriptions whose dosages had to be increased (like my Synthroid), and others that had to be decreased or even better, that I didn’t need to take, like extra cortisol and something with the scary name of APO-PROCHLORAZINE, for nausea, which I think I took twice in the early stages of fall, 2018 and never had to take again
  • Boxes and boxes of ocular liquid gel;
  • All of the different cannabinoid products that I tried after consulting the people at Santé Cannabis, but that, sadly, didn’t have much effect on me.

I decided one day to keep as many containers as I could, just to see them accumulate; just to give shape to the reality of the experience. Yesterday, I laid them all out on the dining table and took photo of them before sending them to recycling.

I hope the next 5 weeks help restore some of my vital energy and mend my body.
I plan to ask for more regular breaks from now on.

 

Though my muscles may stiffen,

though my skin may

wrinkle, may I never find myself

yawning

at life.

-Toyohiko Kagawa

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