This last week of summer coincides with the fourth cycle of chemotherapy, and I am spent. I sleep when I can no longer keep my eyes open, several times a day. I lie down when I am too dizzy to stand. I eat when I want, whatever I want, reveling in what is suddenly delicious and gagging on what is not. I spend long minutes staring at a spot of light on the wall. My whole being is organized around the meeting of needs, and the avoidance of pain. I am an animal: instinctive, self-protective, a little frightened.
In early consultation with the oncologist, he mentioned that one of the most profound side effects of chemotherapy would be fatigue. “If you can’t do anything else,” he said, “just try to go for a half-hour walk a day.”
Inwardly, I rolled my eyes. A half-hour walk? Please. Two weeks before my diagnosis I had performed five times in one weekend as part of the student show at the aerial circus school where I’ve been studying for the past eight years. No longer a beginner, I was, in May, in the best shape of my life – or at least since my early 20s. So strong that, for a while that spring I had almost convinced myself that the lump in my left breast was just an oddly overdeveloped piece of pectoral muscle. Couldn’t he tell I was an athlete? That I had mastered gravity-defying feats of superhuman strength? That I was, perhaps, a little bit vain about it all? What did he mean, exactly, by “fatigue?”
Ten weeks later, my red blood cell count has plummeted. My quadriceps are spent after going up the stairs. Forget performing; I can no longer even invert my body in the air without getting dangerously light headed. A half-hour walk is a nice idea, if there is food and water at the end of it, and a place to sit and rest.
It’s sobering and, for all I might talk about acceptance, it is hard to swallow. In May my plans for the summer were 1) get married and 2) ramp up my training, so that by next spring I could 3) apply for an intensive program of doing circus four hours a day. Three months later, the first of those is going great, but has also meant the early days of my marriage have been spent napping on the sofa or eating rice while Paul does the dishes. It’s not a model of parity I’d like to emulate long term. As for the rest? Well.
I’ve found it surprisingly difficult to write about this, as though there’s something shameful about taking pride in physical ability. But the thought of losing my hard-won strength has at times been more upsetting than the prospect of losing a breast. It’s not vanity, or not all of it. It’s an identity crisis. Like a lot of middle-aged people, I started taking fitness seriously after a wake-up call. In my case, an unplanned pregnancy and miscarriage forced me to grapple with a decade of self-destructive behavior and learn to take better care of myself, physically and emotionally. I started running, and then swimming, and then on an adrenaline high got into triathlons for a while, before I stumbled into an aerial class in 2014 and got hooked. Learning silks, trapeze, and lyra has offered not just nice upper body musculature but a new form of artistic expression, a community, and a connection to the dancer I was in my teens and early 20s, before I started making so many bad decisions.
But, it’s not just me who has trouble talking about exercise and cancer. Oddly, there’s little out there in the literature about maintaining a high level of fitness during chemo and beyond. Despite the multibillion dollar wellness industry, most discussions of exercise and cancer treatment are aimed at those who have never exercised at all. The helpful pamphlets they give you at the hospital tell you to consider swimming, try yoga, take that walk, but none address in detail the effects of cancer treatment on a normally active body, or how it might help. It’s a strange disconnect, one that not so subtly underscores the idea that “healthy” people don’t get cancer – which with one out of three people in the U.S. likely to get diagnosed with cancer in their lifetime is obviously statistically impossible. It’s also weird because there’s plenty of research out there on the beneficial effects of exercise on not just cancer treatment, but on incidences of recurrence. The American College of Sports Medicine’s “Moving Through Cancer” website is one of the few sources I’ve found that give more than lip service to any of this – but even their patient handouts are geared at getting people to start exercising, not maintaining strength.
It’s been frustrating, searching for guidance, and it’s only getting more so as I get weaker. I’d like to be able to find this time of forced rest liberating – a rejection of productivity culture! – but it’s hard to sink into rest as a source of healing when my established path to wellness has led straight through the gym. It all feels like a perverse expression of the conundrum of illness itself, with its warring cultural imperatives to both “stay strong” and accept vulnerability, compromise, and aid.
In “Against Ordinary Language: The Language of the Body,” Kathy Acker (her again!) explores her pursuit of bodybuilding, and her own failure to find its proper expression in words. For Acker, the language of the gym – its grunts and reps and sets – exists at the edge of meaning. “In a gym,” she writes, “verbal language or language whose purpose is meaning occurs, if at all, only at the edge of its becoming lost.” To Acker, the whole project of writing about exercise is an exercise in useful failure, just as a muscle, to grow stronger, must itself be forced to fail through exertion.
“By trying to control, to shape, my body through the calculated tools and methods of bodybuilding, and time and again, in following these methods, failing to do so, I am able to meet that which cannot be finally controlled and known: the body.
“In this meeting lies the fascination, if not the purpose, of bodybuilding. To come face to face with chaos, with my own failure or a form of death.”
I feel like there is something to hold onto here, that speaks to my animal self. As my body becomes softer, sleepier, more sedentary, I remember the many days of training in which I’ve tried to master a new skill and – lats screaming, grip slipping – failed. The repetitive process of regular practice is itself an extended lesson in useful failure, and perhaps this current state of existence is simply a new way for the body to push the edge of meaning, and thus become known.
Close readers may note that I’ve left discussion of rowing out of the above meditation; I’m so new to it, it just doesn’t have the same hold on my identity, or on the way I move through an average week, as my aerial practice. But I would be remiss not to note that Recovery on Water’s entire program rests on the belief that building strength (and camaraderie) should be the standard of care for cancer treatment. That they hold this truth to be self-evident was what drew me in in the first place, and it’s been a source of great sustenance – especially last week when I nearly passed out after practice, oops. Their/our annual fundraiser is coming up September 30, and the money raised here and through other giving goes to support not just gear and coaches, but scholarships for novice rowers like me. Please give if you can – or spread the word to anyone in your world with breast cancer who might benefit from this support.
On Strength
It’s curious, isn’t it, how the idea of lost identity can be scarier than the idea of losing one’s life? Across my own journey, I found the prospect of losing my work identity scarier than the idea of dying - and it took me over three years to recognize this. But maybe these losses feel more tangible / less theoretical?
Have just started to read your Substack, but already your words are resonating!
These writings On Strength are so insightful and compassionate. I am in wonder and gratitude for your skill and strength in sharing these moments you are wrestling thru. Cheering you on to full return to health!