Childhood Cancer for Life
For most of my adult life, my relationship with my body has been an uneasy détente at best. When I’ve felt held back in life, it’s been the can’t-ever-quite-wake-up of anemia, the loss of my sprinting speed and high school soccer career to my first relapse - and most obviously, its inexplicable consistency in letting mutant cells get cozy wherever they’d like and the subsequent sidelining of every major school-age phase. I’ve returned the love accordingly - pushing through too many all-nighters with Diet Coke and Skittles, letting potato chips make up a measurable percentage of my daily diet, and generally forcing rather than training my body to do what I want it to. I haven’t felt fully connected to this thing that I’ve seen as the source of some of my biggest obstacles.
Part of this comes from always feeling like a nail in a room full of hammers. Outside of the cancer world, rhabomyosarcoma isn’t commonly encountered, and I always felt like new doctors saw me as a curiosity. Once, when I was describing the fertility saving steps I took during my relapses, a doctor gasped in awe at “how cool doctors are.” She caught me double check her post-nominal letters on her white coat in confusion. In college, I went to the student health center for an upper respiratory infection. They ordered a chest X-ray and set off a week of terror when they urgently needed Emory to send my previous scans - they didn’t know how to read the scar tissue from radiation. Still don’t remember if I actually got medicine for the infection that brought be there to begin with. It’s been easier to just keep my head in the sand and avoid doctors all together, all the white expecting the body to fail me again before I’m ready.
I was first diagnosed in 1997 and relapsed in 2001 and again at the end of 2003. The lag between recurrence was unusual, though it was to my benefit because prognosis for three-time rhabdo is fairly grim. The in-between time gave me the chance to have the cancer completely surgically removed each time and to regain full strength before going into each new chemo/radiation regimen. I was in what seems to be the first bubble of kids that were much more likely to survive than in the decades prior. That also means I was in the first bubble of kids where the medical community was starting to realize long term effects - the quality of survival versus its mere existence - mattered.
The first indication of this nascent consideration was when I was 15 and my mom asked about the new drugs’ effects on my fertility. We were shocked when we were told that the first chemo regimen probably knocked everything out of the works anyways. It hadn’t occurred to the providers to address this concern secondary to life-saving, and it hadn’t occurred to us to ask. Fortunately my mother has a talent for finding solutions, and her research, advocacy, and a few years of medically induced menopause before I was 19 seem to have done the trick.
As an adult, I’d find myself poring over the Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers put out by the Children’s Oncology Group. This tiny-printed guide book organized by disease and drug are rife with medicalese and sliding scales of possibilities. Here I learned I should probably start mammograms at 25 (chest radiation) and if my heart was still free from cardiomyopathy into my 20s (doxorubicin), I was probably good there. I pretty much assumed a future diagnosis of leukemia or lymphoma was inevitable - afterall, chemo causes cancer. The problem with this research is all of it relies on knowing your dosing. While I knew we decreased vincristine when I lost feeling in my hands and feet and we monitored cytoxan (my only known allergy) closely - I had no idea what my doses had been.
Ten years after I finished my last chemo, I worked up the gumption to go to a survivorship clinic - still not as common then as they are now. I looked forward to the relief of beng given a PLAN based on my unique treatment path from a team of medical professionals who didn’t see me as a novelty. Unfortunately, I learned the team was missing at least a third of my records, and the plan was just print-outs from the already-familiar COG. I left feeling depleted, and now I know this was the last time I tried to proactively look into my health, the detente with my body firmly established. I always had an ob/gyn, probably thanks to the proactive care my mom ensured I had and because I’ve never wanted anything more than to be a mom, and I found a dermatologist after a couple years living at the beach with my Victorian complexion. But I had zero interest in general care or giving cancer or its long term effects any more billing in my life.
Fast-forward another almost ten years, I pushed my body straight into a solid bout of pneumonia over the 2022 holidays, and I was aghast to have only Urgent Care as an option. I went back to work too soon, until my office big brother kindly suggested I consider staying home until I could speak a sentence without losing my breath. So a month or so later when I caught sight of an imperceptible bump on my neck, I assumed a lymph node was still cranky from this holiday sickness. But the farther from the illness I got, the more I noticed the bump growing. Dear friends (all in the medical field) happened to come for a visit and they took to nagging me to set an appointment, in the loving and persistent way that only longstanding friends can do.
Even with this encouragement and with the knowledge from my dad, a lymphoma survivor, that it didn’t feel like lymphoma, I was frozen when it came to scheduling a follow-up. It was contrary to my adult life-long avoidance of general care. I finally had to admit to my chief nagging angel that I’d never make the appointment for myself. She had me send her my insurance card and I had an establish care appointment before I knew it.
I barely kept from rolling my eyes when the new PCP seemed more focused on my childhood cancer than my questions about long term effects, but when he ordered a CT scan of my entire torso to check out the neck and everything, I couldn’t complain. It never hurts to have extra pictures of what’s going on. I was back to rolling my eyes when I got a call about my “lung nodules” and scarring that seemed clearly reminiscent of former battles. When my follow-up appointment then disclosed the mass on my liver and the referral to a surgical oncologist and plenty of testing, I just shrugged. Now I’ll always be grateful for this PCP’s caution or intuition.
Three weeks after my establishing care appointment, on my mother’s birthday, I got the liver biopsy results. While the bump on my neck was absolutely benign, the mass on my liver was definitively “positive for metastatic rhabdomyoscarcoma.” Un-friggin-believable.
FULL STOP right here.
I want to be VERY clear to anyone reading this that a recurrence after 20 years is exceedingly rare and I fully expect to be a footnote in an obscure medical journal at some point. I’ve personally coined it the Solomon Conundrum, but I’m open to suggestions. There is solid, statistical and scientific backing that the five year cure rate is a magic number. My path is anecdotal, and it should not set anyone’s expectations or concerns for their own long-term futures. I wrestled with sharing this diagnosis because the last thing I want to do is cause personal fear for my RCD guests, alumni, and their families. I decided to go ahead and share - with this VERY important caveat - because I think most of us survivors feel the same way about our own self-care and health monitoring. This just as easily could have been any secondary malignancy or something completely new but needing attention. While you should have full faith in your doctors when they transition you to survivorship care - I hope this story is a helpful reminder that you really should continue your care with personal agency and attention. Unlike me, who just continuously gets lucky.
Caveat ended.
As in the first three times, this tumor appears fully resectable. It’s also growing quite slowly. Which is why I’ve chosen to hold off on surgery until after my 20 year high school reunion - the chance to reconnect with the people that held me close the first three go’s of this - and of course Red Carpet Day, which I expect to be one for the books. I made this choice to avoid losing part of my heart along with a chunk of my liver.
One immediate and unexpected effect of the last few months rejoining the cancer world and of choosing to go seven more weeks knowing this joker is nice and cozy in my innermost core has been the complete melting of my lifelong, simmering detente with my body into something of a joyful, peaceful union. There’s so much more to appreciate than hate. My body responds very well to exercise, and while it lets cancer grow, it also keeps it encapsulated. My body endures through where my mind pushes it even with minimal training, and I always recover well. I can count how many times I’ve truly been sick (cancer aside) on one hand. My body didn’t sideline me - it’s kept me in the game for 37 years. And now I have seven weeks to invest in training and nutrition to work with my body to fight this next battle. And I have a lifetime to nurture that relationship no longer wrought with regret or avoidance.
I hope sharing some of this has encouraged you in your own health journey - whether it’s scheduling that appointment you’ve been avoiding or better appreciating all your body does for you. Consult your own medical professionals, and stay in tune to your body - but don’t put your head in the sand and regret what you feel you’ve lost. You own every step of your journey, and cancer can’t take that from you.
#longtermfollowup #childrensoncologygroup #rhabdomyosarcoma #childhoodcancer