Together with Sharon Bray – teacher and author of two books on writing and health – CKN welcomes you to our new Writing Series where Sharon helps readers tap into the healing power of writing during difficult times. As Sharon puts it, “Your stories matter. You are your stories. Our stories shape us and act as the lens through which we see the world. It’s through story that we make sense of our lives, reclaim our voices, and learn our words can touch others’ hearts.” Follow along with this bi-monthly series with Sharon and please send us your stories….they matter to us.
by Sharon Bray, Ed.D.
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)
Several weeks ago, I stumbled on a recording of a 2000 CBC interview with Pulitzer Prize winning novelist, Carol Shields, who died from breast cancer in 2003, just five years after her diagnosis. Asked by host Eleanor Wachtel what it was like to live with cancer, Shields responded: “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. As the American Cancer Society reminds us, cancer isn’t always a one-time event. Cancer can be closely watched and treated, but sometimes it never completely goes away. It can be a chronic (ongoing) illness, a term more commonly used as many cancers, once thought of as a death sentence, have become like chronic illnesses.
If we’re not going to cure cancer, we’ve got to learn to live with the disease. — Julia Belluz
Years ago, when I first encountered cancer in my life, those who were diagnosed and treated for it were commonly called “survivors.” A short time before, “survivors” were defined as the loved ones of someone who had died from cancer. But being a “cancer survivor,” as the Canadian Cancer Society states, means different things to different people, including those who:
- have finished and are recovering from their active cancer treatment and are on maintenance therapy;
- are having ongoing treatment for cancer that is stable and slow growing;
- are on active surveillance;
- are in remission.
Defining a “survivor,” as “anyone touched by cancer,” as the National Coalition for Cancer Survivorship (NCCS) subsequently did, was far more inclusive.
I was among those reluctant to use the term “survivor” as my diagnosis was early stage and immensely treatable. My oncologist even pronounced me “cured” within a year of diagnosis! But the men and women who attended my groups were experiencing more serious and complex cancers, including terminal diagnoses, and “survivor” didn’t seem to capture their experience or prognosis. Not surprisingly, the term “survivor,” was gradually broadened to include “living with cancer for the balance of one’s life.”
I now encounter the use of “living with cancer” vs. survivor more frequently. This comes as no surprise. According to a recent article by Julia Belluz in Vox.com, the cancer death rate has dropped by 23 percent since 1991, with some even larger gains in types of cancer that used to be extremely lethal. This means there are more and more patients … who are neither dying from cancer nor defeating it entirely. Instead, they’re learning to live with it.
Together with the continuous research and work of dedicated oncologists, some cancers can be kept in abeyance for many years, even disappearing for a time in response to treatment. Yet many cancers also reappear, and are, thus, treated more often as a chronic disease–one in which a person can cope for an unforeseen amount of time. While the cancers may be treatable, they also may be the ultimate cause of death, but 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 in the 1970s.
Living with cancer is different from living after cancer. And it’s becoming more common every day. — American Cancer Society
Although advances in and development of new treatments like immunotherapy offer renewed hope for a cure, “cancer-free” may still mean “for now” vs. forever. A close friend of mine, diagnosed a year ago with metastatic melanoma, recently called to say that, after 15 months of participating in a new immunotherapy clinical trial, he was “cancer-free.” I happily celebrated the good news with him, but in the back of my mind, another, more precise, term surfaced to describe the eradication of the tumors in his liver: “no evidence of disease at this time.”
My friend’s results were still a cause for celebration, but I recalled the haunting words of 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, cancer and the fear of its recurrence is what many cancer survivors learn to live with. Recurrence is the shadow lurking in the wings, the moments of anxiety in follow-up appointments or routine medical procedures—mammogram, colonoscopy, CT scan or MRI—that threaten to ignite the fear of recurrence. Just over a month ago, after I was called back for an additional mammogram and ultrasound, I felt a wave of uneasiness. I hadn’t been called back for further imaging since 2000, when a constellation of calcifications had first appeared on the radiologist’s screen. What if? I banished the thought from my mind. Thankfully the additional scans showed nothing of concern.
What is it like to live with cancer? Teva Harrison, in her graphic memoir, In-Between Days: A Memoir About Living with Cancer (2016), describes it this way:
“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.”
Harrison 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, 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, are “wrapped 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
Harrison’s words reminded me of Ann, a beloved writing group member who defied the odds for metastatic breast cancer for several years, living joyfully and fully. When her cancer returned, it did so with a vengeance, yet she maintained her boundless good nature, smiles, and concern for others. She continued to live as fully as she could, driven by the hope and determination to welcome her first grandchild into the world. Every day was a gift given, as far as Ann was concerned. She once described how each morning, when she awakened, she’d cheer, “Another day! Thank you, God,” for having one more day of life. A short time before her death, her first grandchild was born, and as she intended, she lived long enough to witness his birth, hold him in her arms and share the joy of her family’s newest member. She often said, “I have cancer, but it doesn’t have me,” and she kept saying it right to the end.
What Ann had was realism, yes, but she also had hope and determination to be present for the birth of her daughter’s first child. Living with cancer may be living with the shadow— a possibility of cancer recurrence—but it is also fueled by hope. Hope that cures will be found; hope for our friends and colleagues facing surgery, radiation or chemotherapy, hope that our lives will not be cut short; hope that we’ll live to see another day. Living with cancer doesn’t deny the reality of cancer, but it’s the advances in treatment, support of others, and the resilience of the human spirit that means living with cancer is 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.”)
- 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?
Let us hear from you! CKN will select and publish your responses to the suggested writing prompts from Sharon. Send them to Karen Irwin. 500 word limit.
Sharon Bray, Ed.D., is the author of two books on writing and health: A Healing Journey: Writing Together through Breast Cancer and When Words Heal: Writing Through Cancer. Her blog site, www.writingthroughcancer.com, features weekly reflective essays and writing prompts for anyone writing out of illness, pain or life struggle. She leads a number of expressive writing workshops for cancer survivors and teaches creative nonfiction and transformational writing for UCLA extension Writers’ Program. She earned her doctorate from the University of Toronto.