This is Survivorship

*A note to readers: I’ve gone from posting once a week, to bi-weekly, to monthly and beyond in-line with my effort to distance myself from writing about cancer and my treatment, which ended three months ago. I’ve been fully invested in producing a Virtual Reality pilot project—planning, shooting, editing and pitching to potential clients with my son, Nils. In other words, living in the world without cancer. I’ve been spending quiet hours writing short fiction that I will share one day, but for now, this is an essay as a “health update” for all of you that have followed our story and have contributed to my recovery. To my miracle, really, as my doctors reminded me as I left the cancer clinic after my last treatment.

Survivorship

I’m in a group of new patients that palliative care doctors, including my own, group into cancer survivorship—patients living longer with disease and periods of NED (No Evidence of Disease) due to new treatments like the immune therapy I was on (Keytruda). But patients still need support, especially with ongoing side effects and psycho-social areas of “normal” life once cancer treatment has stopped. Without my once-every-three-weeks infusions at the oncology clinic I feel oddly untethered from my care, my favorite infusion chair and the nurses that Annie and I made friends with, my cancer cord cut to enter a new world of life without disease.

My last treatment 3 months ago. I got a bottle of Martinelli's, a nifty certificate of completion, and I got to ring the victory bell (again)!

I still spend time reading Oncology Journal newsletters that I’ve subscribed to out of habit, but also to find a glimmer of hope; if I recur, I might find a clinical trial that could be the cure I’ve been waiting for.

For the last two and a half years I was a cancer patient that my doctor’s referred to as a unicorn for my unlikely survival from leptomeningeal disease, a late stage cancer metastasis to my central nervous system that, once diagnosed, can end a person’s life in a matter of weeks. The large tumors in my left and right ventricles deep in the center of my brain where spinal fluid is made, were of equal size and hard for the doctors to explain: “Did you have a fall recently and hit your head?” I assured them I hadn’t. A lumbar puncture collected spinal fluid that showed circulating cancer cells. The result, along with the brain MRI, confirmed leptomeningeal disease (the prefix lepto meaning thin, fine, slight, and meningeal meaning the three membrane layers that cover and protect the brain and spinal cord: the dura mater, arachnoid mater and pia mater). The last word in the equation is “disease” which is interchangable with the word “carcinimatosis,” a type of metastatic cancer—in my case, bladder cancer—that usually indicates the cancer has advanced and can't be cured.

Three months ago I ended two years of treatment that has had a miraculous effect on my condition: No Evidence of Disease, or NED, an acronym that made me, Annie and my oncologist smile when reading my latest scans as an all-clear. I’m in a space somewhere between living with cancer and without cancer, of being sick or in remission, in treatment or not, a steady march toward a random five year mark that makes it okay to finally declare “I’m cured.”

With my NED status I just want to be done with cancer, but I seem hopelessly stuck with my personal history. My desire to help other people struggling like I did keeps me retelling my story, which, at times, can feel old, like a tire that’s constantly being retreaded for more mileage. I feel conflicted in this space of moving forward without forgetting, helping others while still helping myself, escaping the cave of disease that has consumed chapters of my life, yet still feeling a dark shadow following me. I guess this would be my definition of cancer survivorship.

I had an appointment with my primary care physician last week that was scheduled six months ago and considered a standard well-check visit, as if I was just a normal patient. She was suitably impressed with my new status and offered me standard vaccines I’ve missed while my immune system was in hyper status while under checkpoint inhibitor treatment. Although my oncologist thought it would be okay to inject me with vaccines for shingles, pneumonia, and the latest Covid update, I was hesitant and content to wait and consider one thing at a time. I asked if I should have my cholesterol checked but she said we’ll do that at my next appointment in 6 months. I got a flu shot instead and a pat on my shoulder. This is survivorship.

My next oncology visit isn’t until after the holidays in mid January. I’ll have an MRI of my brain and CT scans of my chest and abdomen the day before so my doctor can go over the results with me at our clinic appointment the day after. I will see the results on MyChart first, usually hours after a radiologist—a doctor I’ve never met, habituated to work in a dark room in front of a bright screen—reads my scans. She’ll transcribe her findings in a concise one-pager that will have a profound impact on me and Annie and our entire family, one way or another. We’ve learned to wait for the message “You have new results in your MyChart,” then we sit on our love seat, inherited from Annie’s mom and affectionately called “Nana’s couch,” and open the results so I can read aloud my fate. This is survivorship.

I’ve been slowly reframing my narrative, shifting from cancer patient to cancer survivor. In this shift, the unicorn is fading away: I’m becoming a horse, part of the normal herd. I would prefer to be a Morgan horse, a breed that my mom loved so much, an American original, a strong, versatile breed that never gives up. I may be a little skittish with my equine senses on high alert for a recurrence, but I’m comfortable and grateful with my life, horse metaphor notwithstanding.

There is always the chance the cancer will come back. If I think in terms of 1 to 2 year blocks, I believe I can carry on and remain healthy increasing my odds of surviving another recurrence, or at least until a new treatment comes along. This way of thinking helps me stay consistent in my daily habits that may increase my odds even further with what’s in my control: a philosophy of food as medicine, daily exercise including walks with spurts of running to increase my heart rate, lifting weights, mostly with dumbbells and only one set to exhaustion, finishing with squats that burn as I rebuild muscle I’ve lost in my legs with age and treatments. And then there’s my love of a thrice weekly sauna followed by a cold shower that I believe, like most Finns, is therapeutic, even if it only brings a welcome, long sleep and a feeling of purification. My natural energy is slowly returning, something my oncologist said could take up to a year after I stopped treatment.

I’m emerging from a dark cave of cancer. What was once thousands of circulating cancer cells in my spine and brain—like bats darting and diving as one organism of death, tumors caking like guano on the cave floor—has all been eradicated and washed clean by the miracle of science and a philosophy of living artfully with Annie. I have the greatest intention of living a normal life—longer than anyone ever expected, including me—with a sunlit horizon ahead of us.

This is survivorship.

Fall in Central Oregon (leaves courtesy of my grandkids), the sky from our deck, and Annie and I on my birthday.