celebrating 5 years cancer free 🎉😄 and learning to cope with the fear of relapse along the way
In October of 2015, my oncologist called me on a Friday evening to deliver the news that my most recent PET scan showed continued growth from the lymphoma clusters in my chest. The chemo wasn’t working, and my cancer was continuing to grow. Sensing my jaw on the ground, she continued onward.
In a disappointed yet matter of fact tone, she told me that I needed to take a medical leave from
Wake Forest Universityand begin a much more aggressive regimen (ICE chemo, stem cell transplant, radiation, etc.). Trying to compose myself, I asked her what a stem cell transplant was and what it meant for the next few months of my life. Then, I asked how this disease progression changed my long term prognosis.
Plainly, she refocused my attention on reaching remission first. Then, she admitted that recurrence rates for patients like me (refractory Hodgkin’s) was around 50-70% within five years. “After 5 years, the likelihood of recurrence drops off a cliff,” she said. After a biopsy confirmed the PET results, I packed my Honda Civic, hugged my friends goodbye, and began the eight hour drive down to Gainesville, FL, where I would begin that more intense regimen at UF Health.
Hurdling down hwy 77, I felt stuck in fear: fear of the upcoming transplant, fear of getting to remission, and a fear that even if I did, my odds of relapse within 5 years were 50-70%.
Over the ensuing months, I would learn that some of my fear had merit - the transplant and the cumulative effect of increased chemo, left me feeling like my body was decomposing with me trapped inside. But the chemo did it’s job. My first clean scan came just ahead of transplant in December of 2015.
When my family wanted to celebrate, I was more tepid. In the back of my mind, those 50-70% odds made celebration feel irresponsible. I was still holding my breath for another Friday evening call from the oncologist, but that call never came. Over the last five years, my remission has stayed constant.
And over these five years, my scanxiety has waxed and waned with each check-up, but what’s changed since those early years, however, is how I’m processing those fears; poking at them to better understand “What is it about relapse that scares me?” “If it did happen, would I change anything about how I’m living my life?”
Peeling back these layers of fear has given me space to process them and live on. To not feel paralyzed by fear as I once was, but rather to find joy and purpose in all of the other things life has to offer, like spending my days with the woman I love or appreciating the challenge of figuring out how to adapt our small business to a Covid world.
Cheers to five years cancer free (and many more)!
PS if you want to help Resilience Gives survive Covid, buy a pair of socks (or 20)!