The time I have left

The enormity of the news didn't sink in fully, not at first, even after my doctor uttered the words: “I'm sorry, we did find cancer.” My husband, Dave, and I had only the faintest sense that evening that someplace off in the distance our lives had been hijacked forever.

Early 2014 brought major head and neck 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 last June showed new tumors, the outlook turned bleak. The cancer—a rare type called metastatic squamous cell carcinoma of the head and neck 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 University of California, 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.

Born and raised in Los Angeles, schooled at UC Davis, and fortunate member of the team that brought SN&R to town in 1989, it might have been natural for me to write or blog about all this as it was unfolding. I’d reported about end-of-life issues before, especially after my brother Marty Welsh, a physician from Placerville, died of Lou Gherig’s disease five years ago. But I just couldn’t bring myself to write about my cancer, however much I admire the people who find the voice to go public with their tales. I didn’t feel I had anything new to offer.

But I’ve turned a corner on that somehow and feel ready to explore some of the questions that emerge for people who face a grim diagnosis. Like this one: How do I best spend the time I have left?

I feel perversely well right now—having recovered from the worst side effects of treatment and not yet experiencing the corporeal failure that is to come. I’m continuing to work part-time until I can’t anymore. I love what I do and am lucky enough to have purpose, supportive colleagues and employers who are good friends, and a job where I feel I can make a difference.

Besides writing, I plan to spend much of the time that remains with Dave, my friends and our big crew of a family. We have arranged gatherings with various people of importance in our lives. My sister and brothers and our clan joined for a summer family reunion on the Monterey coast; we checked into the same hotel and laughed and celebrated one another’s company. 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 in late August, and we luxuriated in the beauty and expansive time together. And we’re planning a few other special trips.

But mostly we’ve just become devoted to taking pleasure in the small things. 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 Yolo County. Our dog, Scout, thrusts her head out the window from the backseat, passionate on behalf of the here-and-now. We’ve become startling 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 at first, but I’d immigrated to that new place the moment I was diagnosed with cancer.

I’ve been lucky enough to have friends and loved ones escorting me to and from the hospitals, clinics, chemo infusion rooms, scanning stations and radiation lobbies. But many who arrive unexpectedly in cancer’s kingdom have come alone. 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 team of doctors, who have been skilled and caring, that I’m not interested in “maintenance chemotherapy” since, for me, the possible benefit would not make it worth the downslide to my quality of life and would give me little extra time anyway. I am a “do not resuscitate” person—desperate to go on living but against prolonging my dying once that process is in full swing. As an extension of this belief, I fully support California’s new “right-to-die” law, though it does not go into effect until 90 days after the current special session on healthcare closes.

My UCSF oncologist, a skin-cancer specialist doing cutting-edge work in personalized medicine, is now attempting to extend the time I have left by getting me in clinical trials that don’t come replete with debilitating side effects. I am utterly grateful for his efforts. I’ve started gene therapy—injections of pIL-12 with electroporation—that have shown promise in other patients. If I’m fortunate and push hard enough, I might also get access to the breakthrough immunotherapy drug pembrolizumab (the “Jimmy Carter drug”), though it is not yet FDA approved for my type of cancer. Any of these might net me more months, maybe even years 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. And 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.”

Then, I try to focus on the present and my gratitude for having lived a charmed life that includes Dave, my family and devoted friends, and work that has always held meaning for me. In the big picture, I see the universe as brilliant and the fact of life on earth as extraordinary. But I know my teeny, tiny piece in it all is coming to a close. Still, it’s impossible for me to imagine going to sleep and then … nothing.

But I will not awaken that next morning and drive out to see the sunrise. And I will not walk with my husband on our daily stroll with Scout out onto the greenbelt behind our home. And I will not marvel at the news of the world as my iPad streams its conflicting arguments for hope and despair about the fate of humanity. And I will not share further moments of warmth and joy with my cherished friends and family. And I will never ever hold Dave again.

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 that breach, I will continue to radiate a few simple reminders: Time is limited. Life is miraculous. And we are beautiful.