Before being diagnosed with breast cancer in April 2013, I was a physically active person, who enjoyed yoga, dance, biking, kayaking and also went to the gym regularly. Although I was no athlete in my pre-cancer life, it was shocking to find myself in a wheelchair unable to breathe or to walk as a consequence of chemotherapy induced pulmonary embolisms and atypical pneumonia. Once I pulled through the crisis I decided that regaining my range of physical activities would be the central focus of my life after treatment. Accordingly, a week before the end of my daily radiation treatments, I went back to work and I joined a Livestrong program at my local YMCA. (http://www.livestrong.org/) The Livestrong program provides free exercise coaching and YMCA membership to cancer “survivors”. Free is important because no matter how good your health insurance is, cancer is very expensive in the United States. I put the word “survivors” in quotes because the term implies a terminus of treatment, which for many Livestrong participants is ongoing, and because it suggests the equally mistaken idea that survivorship is a permanent rather than a temporary status. Approximately 30% of people diagnosed with primary breast cancer will develop metastatic breast cancer.
I knew that I would not last long in a typical breast cancer support group, which would inevitably turn to spiritual theories, embarrassing self-disclosure and mind-numbing advocacy for all things pink. I thought things might go better in an activity based group whose members would understand the particular challenges of post-cancer fitness. For example, there is the wig problem. I would not be able to exercise in a wig; it would be too hot, it would move around, and it could not go in a ponytail. Also there was the difficulty of finding appropriate exercise gear for a prosthesis, and, indeed, finding an appropriate prosthesis. On top of these novel logistical challenges was the simple fact that I had not exercised for almost a year and had spent several weeks in a hospital bed. One day in bed is equivalent to a week of inactivity. I needed a group where when you miss a session and then show up explaining “I’ve been sick, but not really sick” they all get it. I could not imagine returning to my pre-cancer hot yoga class among all those apparently healthy and apparently perfect bodies or to dance class where every eye is on the mirror.
I had not anticipated two aspects of the Livestrong program. First, the informative presentations on topics like “The 10 Keys to Longevity” by so-called experts turned out to be riddled with misinformation about the causes of cancer and cancer medicine. I was enraged by the implication that proper diet or exercise or stress reduction could have warded off our cancers and amazed by the hubris of the speakers and their fact-free speculations. But I was equally dumbfounded by the sheer bravery and physical determination of my peers, several of whom had had multiple cancers, recurrences and damage or side effects from treatment. I took to heart the example they set, which combined the importance of optimism about the future with full immersion in the present moment.
Alas my story does not end triumphantly with a triathlon “for the cure” featuring a Livestrong team finish, although that would make for a nice narrative arc. My return to health and fitness BCE (before the cancer era) remains a goal rather than an achievement. It is taking longer, requiring more work and greater determination than I had anticipated. There is fatigue; there is pain, stiffness and lack of mobility in my arm. There is residual weakness and discomfort from chemotherapy and radiation, and I still have neuropathy in my feet. My sense of balance has not yet returned. And, I am still unable to engage fully with two of my favorite pre-illness activities, biking and kayaking because of the threat of lymphedema if I lift anything over 8 pounds on my mastectomy side. So the simple task of loading my bike or my kayak onto the car has become a potentially dangerous proposition. These are all reminders of my illness that won’t be going away anytime soon. However, there are some unexpected gains. Now, I am directly aware of the stubborn courage of those who are active despite whatever limitations they might have. And now I am able to experience the sheer pleasure of walking or running that is probably only available to someone who has been unable to walk or to run. For the time being, these gains will have to substitute for a triathlon finish or a race for the cure.
Charlotte Witt is a philosopher who lives in Maine.
Thank you for this. Not a lot of people talk about the enduring side effects of surgeries and treatments or the fluctuating state of remission/cure/”survivor” status. Sometimes I wonder if that makes women feel like we are weak if we share these things. I think it helps to share and I appreciate your willingness to share your story.
Charlotte, I am impressed by your resolve and your frankness. Cancer treatment seems barbaric; I’m so glad you made it through so far.
Wow. Powerful stuff. Thanks for sharing your story and insights.
Jeff
I too had breast cancer, I wonder where you got the idea about lifting more than eight pounds will affect your lymphatic system? Slowly and steadily, you ought to be able to increase the weight you are able to lift, resuming all previous activities, with care and intention.
I know all bodies are different and mean no ill will, but the science is changing and I imagine perhaps you may be getting old information. http://www.penncancer.org/physical-activity-and-lymphedema/
Thanks Melly Testa for the link to the study. Very encouraging. I was aware (from my physical therapist) that the recommendations are shifting from no weight to some weight, although the 8 or 10 lb limit is still the norm even from the most reputable sources. The information with the study emphasizes small and predictable weights (e.g. no push-ups or bands) and so it isn’t clear to me that the new advice would include heavy lifting overhead of an unstable weight like a kayak. But a lot is unknown about lymphedema and it is great to see this research.
Charlotte, thanks for guest posting. I leaned a lot from your post. It makes sense that a return to ‘BCE’ fitness would take time, but you’ve done a great job explaining what’s involved to those of us who haven’t had first hand experience and are only aware of the rhetoric of survivors, as if things just resume as they were before. Thank you for that.