The time I have left

Early 2014 brought major surgery, then six weeks of chemotherapy and radiation. Eight months later they found cancer again, so it was Christmas surgery and more of the same. When a scan in June showed new tumors, the outlook turned bleak. The cancer, a rare type — metastatic squamous cell head and neck carcinoma of unknown primary — had gone systemic.

Like all doctors, oncologists want to offer patients hope — who can blame them? But with a little prodding, I was able to learn the approximate truth. A Stanford specialist gave me six to nine months to live. “But there are people who do a lot better,” he said. My surgeon told me “Months to a year.” My UC San Francisco oncologist said, “The average is a yearish, but nobody’s average.”

So there it is. I’m 59. I have terminal cancer. And I’m dying in a yearish.

I feel perversely well right now. I have recovered from the worst side effects of treatment, and I am not yet experiencing the corporeal failure that is to come. I am working part time. And I have turned my attention to the question How do I best spend the time I have left?

My answer is writing, family and friends, the pleasures of small things.

My sister and brothers and the rest of our clan gathered for a reunion on the Monterey coast this summer. My niece came over from France, bringing her young daughter and new baby. We sobbed quietly in each other’s arms as farewells were said, both knowing we’d likely never see each other again.

Dave booked us a cruise to Alaska, and we’re planning a few other special trips. But mostly we read and laugh. We work. We walk and watch movies. I was told “Don’t skip dessert” — so we don’t. We play the Neville Brothers and dance around the living room.

We’ve taken to getting up early a few mornings a week and driving out to see the sunrise over the flatlands of our mostly rural county. Our dog Scout thrusts her head out the window from the back seat, passionate on behalf of the here and now. I am suddenly aware of how differently the sun announces itself into the world each day.

In her famous essay “Illness as Metaphor,” Susan Sontag wrote about “the night side of life,” a kind of parallel universe that opens up when a person moves from the kingdom of the well into that of the sick. I didn’t know it right away, but I immigrated to that new place the moment I was diagnosed with cancer.

I crossed the boundary into hospitals, clinics, chemo infusion rooms, scanning stations and radiation lobbies. I met my fellow travelers, the rail-thin man in the corner with the clogged IV, the elderly woman in the stunning purple hat waiting for her turn on the radiation table, the state bureaucrat who took his chemo wearing a tie, the university student who arrived at the infusion center in a taxi. The solidarity I feel with the other cancer patients is almost overwhelming. Like me, they probably weren’t aware this “night side” even existed until they arrived in it.

I’ve told my skilled and caring doctors that I want no “maintenance chemotherapy.” For me, the possible benefit isn’t worth the downside. I am a “do not resuscitate” person — desperate to go on living but against prolonging my dying once that process is in full swing.

My new oncologist, a research scientist doing cutting-edge work in personalized medicine, is trying to get me into clinical trials that don’t come replete with debilitating side effects. I’ve started gene therapy — injections of pIL-12 with electroporation — that has shown promise in other patients. If I’m fortunate and push hard enough, I might also get access to the immunotherapy drug pembrolizumab, though it is not yet FDA-approved for my type of cancer. Any of these might net me more time before the decline, and boy, would I take that time.

Still, my basic trajectory is unswerving.

I sometimes worry about my ability to exit life with grace and humor. What if I’m bad at suffering? I admit I can fill up with fear, but what’s the point? For counsel, I turn to my favorite philosopher, Lao Tzu: Be content with what you have/rejoice in the way things are/When you realize there is nothing lacking/the whole world belongs to you.

I understand that my infinitesimally tiny piece in all this is coming to a close. Letting go will be difficult, but death has its own clock. So I will take solace in the idea that, once gone, I may come to occupy a small space in the hearts of the people who loved me most. And perhaps from there, I will be a source of a few simple reminders: Time is limited. Life is miraculous. And we are beautiful.

Melinda Welsh was founding editor of the Sacramento News & Review. She is leading a national writing project about climate change, www.letterstothefuture.org

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