For the Week of January 8, 2018: What it Means to Live with Cancer

You tell me to live each day

as if it were my last.  This is in the kitchen

where before coffee, I complain

of the day ahead–that obstacle race

of minutes and hours,

grocery stores and doctors…

 (“Imaginary Conversation” by Linda Pastan, in Insomnia, 2015)

Next week I’ll begin the first session of an eight week expressive writing group for people living with cancer, something I’ve been doing since 2001, but this one is new.  It’s the first time I’ve offered a workshop in Toronto, and as I’ve thought about the potential participants, I’ve been thinking about cancer, its terminology, and reading Canadian articles as well as poets and writers who are–or were–living with cancer.  One well-known author, Carol Shields, who wrote the Pulitzer Prize winning novel, The Stone Diaries (1993), died from breast cancer in 2003, five years after her diagnosis.  Three years earlier, she discussed what it was to live with cancer in a CBC radio interview.  “I don’t know the future,” she said.  “I can’t plan very finely for the future as I did once.  I can plan one month ahead.”

Shields’ candor got me thinking about what it means to “live” with cancer.  Years ago, when I first began my workshops, it was common to refer to those diagnosed and treated for cancer as a “survivor,” defined by the National Coalition for Cancer Survivorship (NCCS) as “anyone touched by cancer .”  At the time, I was embarrassed to refer to myself as a survivor; my diagnosis was very early stage and immensely treatable.  My groups were made up of individuals–“survivors”– whose cancer diagnoses were far more serious, even terminal.  Gradually, however, as more and more people were living longer after a cancer diagnosis, “survivor” was broadened to include for “living with cancer for the balance of one’s life.” Since a cancer cure has yet to be discovered, the broader definition makes sense.  Cancer may disappear in response to treatment, but it can also reappear, a possibility anyone who’s been diagnosed with cancer understands well.

More often now, the literature about cancer more often uses use the term “living with cancer” than “survivor” to describe those who have experienced the disease and its treatment.  With continuous research and work of dedicated oncologists, some cancers can be kept in abeyance for many years, becoming more like a chronic disease–one in which a person can cope for an unforeseen amount of time.  Their cancers are treatable, but ultimately, ones that will be the cause of death.  Yet thanks to advances in cancer treatment, more people are twice as likely today of living ten years or more after a cancer diagnosis than they were decades ago.

Yet a cancer cure remains out of reach. Although new treatments like immunotherapy give us hope, “cancer-free” more often mean “for now” vs. forever.  When a friend of mine recently called to say that, after a year of immunotherapy clinical trials, he was “cancer-free,” I celebrated the news with him.  Yet I was thinking of another, more precise, term for the eradication of the tumors in his liver:  “no evidence of disease at this time.”  His results were still a cause for celebration, but I remembered a line from a poem, “It Seems We Can Live with Cancer Now,” by Bonnie Maurer.  She describes a family of three women, all of whom have had cancer.  Even though they are “clear,” or in remission, the possibility of recurrence is never far from their minds:

During quiet conversation, when the lamp shorts out,

We will show no surprise, really…

What cancer is farming us?

(In:  The Cancer Poetry Project, (Vol.1, 2001)
“What cancer is farming us?”  Whether we call ourselves patients, survivors, recovered or in remission, we live with cancer.  Nearly 18 years ago, I recall how my oncologist pronounced me “cured,” after a regimen of lumpectomies, radiation and tamoxifen.  I admit that I didn’t want to consider the alternative, but the fear of recurrence is the question that many cancer survivors live with.  It’s the shadow lurking in the wings, the moments of anxiety in follow-up appointments or the  routine medical procedures—mammogram, colonoscopy, CT scan or MRI–that threaten to ignite fear of a recurrence.  I admit that just three weeks ago, when I was called back for an additional mammogram and ultrasound, I felt a little uneasy.  I hadn’t been called back since 2000, when a constellation of calcifications first appeared on the radiologist’s screen.  What if?  Thankfully the additional scans showed there was nothing of concern.

“Even though I’m being treated with the most cutting-edge medicine, my disease can’t be contained forever…there’s not a schedule or formula for when it will leap onto the next organ, or start to grow where it’s already ensconsed.  If a treatment works…it could work for weeks, months or years.”–Teva Harrison, In-Between Days:  A Memoir About Living with Cancer.

What it means to “live with cancer” is vividly captured in a combination of graphic cartoons and words in Teva Harrison’s memoir.  She lives with incurable and advanced metastatic breast cancer.  She describes her illness, her life, in honest and frank terms; the reader cannot help but be touched by her story.  Despite everything, she expresses gratitude for her medical team, because, as she says, “they are doing everything they can to turn it into a chronic illness…As science advances, she writes, “more will carry a stable, or managed, cancer to an unrelated end.”

Despite living each day with a terminal disease, Harrison has hope.  “Living with cancer requires hope,” she says.  “I have to balance the hope I need to get up every day with the pragmatism I need to deal with bad news.”  Her hopes, she tells her readers, arewrapped up in three month increments, which is when I have the scans that tell me I’m still stable.”

Every day I am seeking the sweet spot, the place where I can live my life more fully, forgetting, for a moment, that I’m always living with cancer.–Teva Harrison

I read her words thinking of Ann, a beloved group member who defied the odds for metastatic breast cancer, continued to live with smiles, energy, concern for others, and the determination to welcome her first grandchild into the world.  She lived fully, making every single day she had left count, and describing how, each morning she awakened, she’d utter with a joyful “thank you, God,” for another day of life.  She was there to witness her grandson’s birth, and for several days, shared the joy of her family’s newest member before she passed away.

Is that what it means to live with cancer?  We may live with the shadow, the possibility of a cancer recurrence, but we also live with hope. Hope that cures will be found; hope for our friends facing surgery, radiation or chemotherapy, hope that our lives will not be cut short; hope that we’ll live to see another day.   Hope is what keeps us going and what keeps us living for as long as we can.

 “As scientists listen for signals from alien worlds,
we tune our keen ears to stories of others who have lived
clear for twenty years.”

(Bonnie Maurer, “It Seems We Can Live with Cancer Now.”)
Writing Suggestions:

  • Explore what it means to you to be someone who is “living with cancer.” Describe the ups and downs of this reality.
  • If you had wisdom or advice to offer to the newly diagnosed, what would you say about how to live with cancer?
  • What has “living with cancer” taught you about your life?

About Sharon A. Bray, EdD

Best known for her innovative work with cancer patients and survivors, Sharon is a writer, educator and author of two books on the benefits of expressive writing during cancer as well as personal essays, a children's book, magazine articles and the occasional poetry. She designed and initiated expressive writing programs at several major cancer centers, including Breast Cancer Connections, Stanford Cancer Center, Scripps Green Cancer Center and Moores UCSD Cancer Center. She continues to lead expressive writing groups for men and women living in the San Diego area and teach creative writing workshops and classes privately for UCLA extension Writers' Program. She previously taught professional development courses in therapeutic writing at Santa Clara University and the Pacific School of Religion, was a faculty member of the CURE Magazine Forums and at the Omega Institute in 2014. Sharon earned her doctorate from the University of Toronto and studied creative and transformative writing at Humber School for Writers, University of Washington, and Goddard College.
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