April was a month of celebration and struggle.
I hosted a tenth-year anniversary gathering for alumni tutors of the writing center I direct. I had a lovely visit with my parents that included planting herbs and taking a road-trip to the American Museum of the House Cat (quite possibly every cat lady’s dream…). I dropped off my leftover chemo-side-effects drugs at a safe-drug-disposal event—most cathartic! And I attended my 25th college reunion at Agnes Scott surrounded by smart, accomplished, inspiring women, an event especially meaningful because of all the moments in the last year I wasn’t sure I’d be able to be there.
I made a decision in April to embrace celebration as much as possible; my still-limited energy went to people and travel (and cat museums). That left little for writing. The danger (if one might call it that) of concluding my story on the blog with that triumphant dance down the hallway is that it suggests my journey through cancerland is complete. If I’m honest, my writing hiatus reveals my own deep-seated desire for that to be true.
But it’s not.
Being declared cancer-free is cause for celebration; being done with treatment is, well, tremendous. One small hiccup: being done with treatment is only the first piece of the process. Thus, with the celebration comes the struggle.
I’ve come to think it’s like hiking a mountain. Diagnosis and treatment, including chemotherapy, surgery, radiation—that’s the climb. The climb is hard, arduous, laborious. Many would say it’s the toughest part of the hike. There’s not much of an appreciable view along the trail; you keep your head down and push forward to the top. The summit, if you’re lucky, will be the ultimate reward: a cancer-free body, a beautiful view of a healthy, promising future.
It’s lovely, beyond lovely. But you’re still at the top of the mountain. And you can’t stay forever at the top of the mountain. You still have to make the climb back down.
Maybe only those with knees over forty can really relate, but trust me when I tell you: climbing down can be harder than climbing up. It puts pressure on different parts of your body. It requires adjustment to your sense of balance. In terms of perception, descending a steep slope is often scarier than ascending; fear of falling is heightened. And while, when you’re going up, your goal is clearly defined—you want to reach that summit—when heading down, the end-point is a bit more amorphous. You want to get off the mountain, eventually. You want to be done hiking and take a load off and relax. But when is the hike over? When you get to the trail-head? When you’re back at your campsite, or cabin, or house? After a warm shower and a thorough tick-check? And then there’s the fact that after making that climb and seeing that view, nothing will ever feel or look quite the same again.
Since completing radiation I have experienced ongoing pain and mobility issues related to something called “cording” in my left chest and arm (reaching, carrying, just getting dressed are problematic), along with the accompanying possibility/threat of lymphedema. I’ve had anxiety about recurrence and occasional flashbacks to particularly traumatic moments, events my doctors have likened to PTSD. “Chemo-brain” frequently robs me of words mid-sentence, and I often feel like I’m living in someone else’s body. I used to run 5Ks, lift weights, hike, bike, and paddle for fun; now it’s a challenge to walk 2 to 3 miles a few days a week and complete my physical therapy exercises daily.
I don’t share these facts for sympathy. I just want to paint a realistic picture of what recovery—even in the best-case-prognosis-scenario—looks like. Since treatment ended in early March, I’ve had 17 PT appointments, 5 therapeutic massages, 2 counseling appointments, 2 support group/Komen education meetings, 3 appointments with cancer-related specialists, and 3 additional doctor appointments, 2 of those to treat conditions likely brought on by my weakened immune system. That’s 33 recovery-related appointments in 72 days. I have 7 more appointments pending between now and the end of May.
My survivorship experience is not unusual. My physical therapist has repeatedly told me that it typically takes 18 to 24 months after the last major surgery to get back to something that feels like normal, and I won’t even hit that surgery milestone until mid-June.
It’s gonna be a long haul down a big mountain.
Various (well-meaning) folk have described that mountain as “the new normal.” And while I know it’s a big hike, and that my mind and body are in some ways permanently altered, I feel the need to warn everyone I’m likely to punch the next person who suggests that this trail will never turn a corner. It may be the “now normal,” but long-term? In order to heal, I need to believe there will come a time when my social and creative obligations will outweigh the medical appointments on my calendar, when the daily discomfort will lessen enough that it’s not a constant reminder of the hell of so much of this past year.
I can’t predict the future, of course, and I’m working on accepting there’s more bushwhacking ahead than I’d like. But my hope, eventually, is to get back out there and climb a different mountain, a real one, with a name like Sharp Top or Buffalo or Bald Knob. I want to lift my face to the sun and drink in one of those views, feel gratitude in my heart and strength in my body. And know that my knees, however creaky, can handle the steep climb down.
Stay tuned for a chance to vote on a name change for the blog (don’t worry, this URL will still work, too!), more bionic boob stories, new books and resources, and—of course—more hats!