Wintering

(artist unknown)

There's good news. And bad news.

First the good news: the tumour is shrinking! Definitely shrinking. After two treatments, it is much smaller, and less turgid.

The bad news isn't really news at all, because everyone already knows it. Chemo really sucks. (Insert a swear word in that sentence too.) It really, really sucks. I started it with an open mind, willing to believe that it might not be so bad. I was wrong. Now I understand the comments and the tone of voice of people who have gone through it, or have been close to someone who has, when I told them the news.

The good news in the bad news is that oncology really does seem to have figured out a good drug regimen for nausea. Though I did have some nausea in the first cycle, it was probably because I didn't get the most important drug on time. And apparently, once nausea starts, it is hard to control. I didn't really experience any nausea in the second cycle, when I took all the drugs at the recommended times.

"The chemo slam," as I've come to call it, sends every cell in my body into shock. In the last cycle, I had 4 days of constipation and then a day of diarrhea, vs 5 days of constipation in the first cycle. I experience a sense of light-headedness and wooziness, and often have trouble focussing my eyes. It is hard to concentrate. Fortunately, in the last cycle, I didn't have a day of muscle and joint pain, like I did the first time, but there were definitely a couple of days of no energy. These have been weekend days when Claire is at her dad's, so I only have to tend to myself, and Daisy, the cat.

One of the chemo drugs is known to be a bladder irritant. This ended up causing me problems when I went out for a walk on Day 6. With every 4th step, I would have a little urine leak, almost like my bladder was in spasm. But the worst was standing on the front porch, trying to get the door unlocked, and losing complete control of my bladder. I recalled my shock one day, at age 7, when I realized that urine was spilling onto my grandmother's front porch from under my dress. But this time, my mom wasn't there to comfort me, like she was all those years ago. I also had a flash of compassion for the future, older me, who may, perhaps, have this as a chronic problem.

Much like the trip to the ER that I described in an earlier blog, at first I wasn't going to tell anyone about the humiliation of losing bladder control. But then I told one friend, and then another. After telling four women, who then told me of their own bladder incontinence, I decided I would write about it.

Women with leaky bladders—unite!

I wonder what would happen if we told each other these stories of bodily betrayal more often.... if nothing else, we would feel less alone in our suffering.

For the past week, I've been wrestling with how to psychologically approach chemo, when everything in my body resists it. I have two more cycles of this particular chemo regimen. And then the regimen will switch to an entirely new drug, with its own side effects, for the last 4 cycles.

It appears that I need to let go of my expectations of myself, and come to terms with the fact that riding the chemo slam is going to be a full-time job, at least some days in each cycle. I suppose that is why I have sick leave, don't you think? Sick leave means that nothing is expected of me in terms of work. But there is nothing in our culture that supports "being" rather than "doing," and certainly nothing in academia. We must endlessly, relentlessly prove our worthiness by doing.

Even in the midst of a global pandemic, when paid sick days are surely the most obvious "no-brainer" in the world, our current premier thinks they are a "waste of taxpayers' money." I have a few more things to say about the cruelty of a society where sick people have to decide whether to work to pay the bills and risk death (in the case of COVID) versus looking after their bodily/mental/emotional needs.... but another time.

I've been taking inspiration from Katherine May's lovely book, Wintering: The Power of Rest and Retreat in Difficult Times. May describes winter as "a fallow period in life when you're cut off from the world, feeling rejected, sidelined, blocked from progress, or cast into the role of an outsider." Wintering involves "deeply unfashionable things" like slowing down, napping, resting, tending to one's needs.

Winter is a time that is out of sync with the frantic, frenetic pace of our world, which has slowed a little bit, at least for some people, in COVID-time. I love how May describes the shift into another rhythm of time.

There are gaps in the mesh of the everyday world, and sometimes they open up and you fall through them into somewhere else. Somewhere Else runs at a different pace to here and now, where everyone else carries on. Somewhere Else is where ghosts live, concealed from view and only glimpsed by people in the real world. Somewhere Else exists at a delay, so that you can't quite keep pace. Perhaps I was already teetering on the brink of Somewhere Else anyway; but now I fell through, as simply and discreetly as dust sifting between the floorboards.

I'm going to try deepening my practice of wintering. It turns out that there is already a resident expert in the house—Daisy, the cat. She quite enjoys my low-energy times, when I curl up on the sofa or the big recliner chair with my quilt, and she finds a comfy, warm spot on top of me. I've also just bought a BritBox subscription ($0.99/month for 2 months introductory rate until 29 Nov) and started watching Shetland. Imagine. Me, watching murder mysteries on TV. (The scenery and the accents are gorgeous!!!!)

Every day, maybe every moment, seems to involve a lot of discernment about what I need, what I want, what I can do. Sleep and energy are highly variable. Yesterday I walked what would have been an easy walk in the past, but it was too much. It's hard to predict.

My hair is now rapidly falling out, like dust motes. A new phase of this journey.

Next chemo is on Tuesday. I hope I can ride the next chemo slam with more ease and self-compassion.

PS - Krista Tippett did a beautiful interview with Katherine May about wintering, which you can find here. That is how I learned about the book originally.