Body and Mind in Here Be Dust

In 1995 I did the first Boston-New York AIDS Ride, bicycling from my adopted city to my birth city in three days with thousands of other people. I had trained for that ride for about nine months, almost exactly the same length of time I was in active treatment for cancer.

In one sense, the two experiences were opposites. I spent as long as 12 hours a day on the road while training for the ride; while under treatment I spent most of my time at home. After completing the ride I went out dancing in Greenwich Village on a surplus of adrenalin; after treatment I am still dealing with fatigue. While training I had pushed myself, hard, completing a dozen centuries (rides of 100 or more miles a day), with 137 miles my longest one-day trip. Under treatment I cleared my schedule as much as I could and took naps. But I continued my workouts, not on the road but on a mini-bike at home, at reduced intensity when necessary.

(At Boston’s World Trade Center on the night before the Ride began.)

I had also been on the AIDS Ride newsletter committee. Our meeting post-Ride was subdued. All the intensity involved with training and cycling had dissipated and we realized that we were feeling a kind of low-grade depression. There was a void where once there had been hard work and focus.

I am reminded of that when I read accounts of transition post-treatment.

“After experiencing cancer and its allopathic treatments, most people are often left wondering, ‘What just happened?’” writes Dr. Regina Huelsenbeck . “Most of the survivors I have worked with actually report the time immediately following completion of cancer treatments to be the most psychologically difficult.”

“I know of others who experience this same post cancer, post treatment collapse,” writes Belinda Hawkins . “A time and space when we sort of implode, re-evaluating what’s important, our relationships, our work, our life in general....That post treatment lull, that feeling of ‘s**t, what just happened?’. And while some people feel angry, or numb, others feel abandoned and rudderless on a sea of disbelief and despair.”

“The world seems different now, in so many ways,” writes Jo Hilder . “How can you just go back to normal? What the hell is normal? For many folks, the worst and most stressful part of having cancer isn’t having cancer – it’s what happens when successful cancer treatment ends. It’s that anxiety-producing ‘drop-off’, when the specialist gives you an all-clear and sends you back to your life again with a smile and a follow-up appointment in a few months. This gap can seem just like the edge of a cliff. What happens now? Who will be taking care of me? Who can I talk to about my fears and anxieties about the cancer returning?”

Three days after I finished active treatment, a Facebook friend posted this video of Maori kapa haka performers. The haka is traditionally described as a war dance and includes stamping, menacing facial expressions, and chants. The dancers are loud, they are fierce, and they make my heart soar. I’ve been doing my own internal version of a haka ever since I was diagnosed on March 4. The power and intensity of my fight vibes have carried me through treatment.

The intensity in my life has now been dialed down several notches. In the week following the end of active treatment I am healing from radiation; as of December 10 any pain I had was gone, though I still look pretty burned. On that same day I had a follow-up MUGA scan to check on my heart (the results are comparable to my pre-chemo baseline; yay!). I take a little round white pill every night, whose job is to keep cancer at bay. On Monday I slept in – the first Monday since October 20 that I have not had to set my alarm, because I no longer have a radiation appointment.

Will “scanxiety” – fear of recurrence – hit me? It’s too early to tell. But when my chemo ended, even before my 33 rounds of radiation began, I knew that I would experience some kind of post-treatment void. Caregiving does not stop for cancer, and I am caregiver to my partner. My time in the chemo chair, taking poisons into my bloodstream, had been a form of respite for me. People were taking care of me for a change.

That kind of support is tough to lose, which is why I’m keeping some of it. My breast cancer support group is one way. Online communities are another. During my first week of radiation I met with the LCSW at my facility and said I saw this transition coming. Counseling is available for me if I need it post-treatment, but we are also working on a way that I can remain involved, at once giving back to and benefiting from community. (Nothing is official yet. Stay tuned.)

My fight against cancer continues in other ways. “Mortality rate is reduced by 34% after breast cancer diagnosis for individuals with higher levels of reported physical activity, compared with those with the least amount of physical activity,” according to research performed at the University of North Carolina, reported here. As I mentioned in my last entry, exercise also reduces pain associated with the aromatase inhibitor I’m now taking. And this recent webinar from the Johns Hopkins Breast Center (“Strength After Cancer: How to Safely Progress with an Exercise Program from Treatment to Survivorship”) gave me a better feel for my return to strength training.

I may not be riding centuries in preparation for an event, but I continue to work out on my mini-bike at home. I am literally pedaling for my life. As they had done during treatment, my body and mind become a dynamic duo. We had teamed up to drive out an intruder; now we work together to foil its return. Such duality is artificial, but it helps me to think of my body as – well, as a buddy. Maintaining that focus helps me with my transition.

This picture of a bicycle, accompanied by the quote presented here (mistakenly attributed to Goethe but by William Hutchinson Murray), served as inspiration for me while I trained for the AIDS Ride almost 20 years ago. Seven years ago, with no inkling of what was to come, my partner returned from her regular mammogram and added her nipple markers to the wheels. With added layers of understanding I smile at it now, just as I had smiled at it then.