After the bell rings: Survivorship in the shadow of cancer
When I rang the bell the first time, I felt like a pied piper. An exuberant conga-line of oncology nurses and even an acupuncturist followed as I departed the infusion center for the last time, gathering in a private area for the brief ceremony. A plaque hung on the wall where I read the inscription out loud before giving the bell a hefty shake. Surrounded by applause and laughter, glee exploded in my chest like a cloud of confetti. This being the day before Thanksgiving, I arrived loaded with pumpkin cookies for the nurses and spent my final infusion high on gratitude. I had successfully completed 16 rounds of chemo, something I had doubted my ability to manage when it began six months before.
Bell-ringing makes a powerful statement; a crucial stage of cancer treatment has reached completion. The ceremony remains controversial because some patients, particularly those with metastatic cancer, may never finish treatment and are denied the pleasure of a commemorative moment. I rang the bell after completing radiation for both diagnoses but refused the ceremony when I finished chemo a second time. I’d had to do more rounds of chemo than initially anticipated and didn’t want to jinx myself by rejoicing too soon.
Completing trimodal treatment (chemo, surgery, and radiation) for Inflammatory Breast Cancer (IBC) delivered both excitement and relief. Like an adolescent celebrating an 18th birthday, I experienced the intoxicating anticipation of freedom. No more daily trips to the hospital or toxic pharmaceuticals routinely dispensed through my chemo port. No medical providers informing me of all the things I couldn’t do and monitoring my every move. My immune system would finally begin to recover from the assault and I could return to a work schedule not continually disrupted by medical appointments.
And yet, as when that same adolescent realizes that adulting contains an element of rock-hard fear, I felt apprehensive when my oncologist discharged me from active treatment. Although regular check-ups, daily anti-estrogen medication and occasional scans waited in the wings, I was launched into an uncertain future and expected to return to some version of normal life.
Upon completing treatment for my first cancer diagnosis, I expected I would “get my life back.” Months passed before it sank in that my pre-cancer life could not be fully recovered. Treatment side-effects persisted and some, like neuropathy in my feet or lymphedema in my arms, may last a lifetime. My body had proven susceptible to life-threatening illness but had also demonstrated a fierce will to survive. On the offensive in the wake of serious illness, my mind had occasionally deteriorated into a battlefield where thoughts careened out of control, dragging emotions across an internal landscape littered with trip wires and explosives. My hopes and expectations for the future were re-shaped in ways I never could have anticipated before diagnosis. Sometimes I looked in the mirror and didn’t recognize myself. Perhaps it was due to my stubby hair, worn long my entire adult life and slowly regrowing after baldness, or maybe my spirit had also transformed. Who was I in this new, post-cancer life?