There is an art to living in a constant state of health ambiguity — something 18 million cancer survivors in the United States well know.
What does the term “remission” mean to cancer patients? I ask this because people who live with my cancer, multiple myeloma, are in and out of remission for their entire lives.
To be clear, all cancer survivors know that your cancer can be growing inside you without any symptoms or signs. Meaning that this is a useless definition. For cancer survivors anyway. I posted the risk graphic in the upper right corner of the page to illustrate that I think remission is more about risk.
In my life as a long-term cancer survivor, my view is to live an anti-cancer life daily. My wife and son might say that this attitude makes me a bit difficult to live with and makes me a bit anxious but I have been in complete remission from my incurable cancer since early 1994. So…
Are you a newly diagnosed cancer patient wanting to learn about how to survive cancer? Let me know-
I recently interviewed Gubar, 78, via email about living with cancer. As a 57-year-old blood cancer patient myself whose mother and maternal grandfather died at 60 of blood cancer, the topic is personal.
The following was edited for length and clarity.
“The question mark of remission can feel like a sword of Damocles. When will the cancer return? How long have I got?” Gubar says. (Susan Gubar)
Q: You write: “Remission, I could tell you, would always have an invisible question mark after it. … Remission brings a heightened sense of contingency, of being healthy-but-only-for-a-while, and therefore the anticipation of waiting for the other shoe to drop.” How do you live with that “question mark”? How do you find joy when wellness is precarious?
A: The question mark of remission can feel like a sword of Damocles. When will the cancer return? How long have I got? And those fearful imponderables spawn others. Will there be an available treatment that I can endure? Can I bear to go through the life-in-death of being a patient again?
But if the remission lengthens, the question mark generates an exclamation mark. I have survived 15 years after a diagnosis that gave me three to five years! I received an experimental drug in a Phase I clinical study that many could not tolerate, and it worked for nine of those years! For the last two years, I have been on a drug holiday — because long-term use of the medication can cause leukemia — and I’m still here!
When the question mark of remission produces an exclamation mark, the exultation has everything to do with astonished gratitude for the bonus of unanticipated time … in which I have seen my children marry, welcomed grandchildren into the world and fussed over my beloved husband.
What more can one ask for?! There’s still a question mark, but there’s also a thrilling exclamation. With the passage of years, terror shrinks while thankfulness swells.
Q: “Watch and wait” is the medical stage when cancer is being observed but not treated. Seasoned patients know it as “watch and worry.” How do you live fully despite anxiety?
A: No one wants to be counted among “the worried well.” Yet it is impossible not to fret at aches and pains that might portend a recurrence. It is also impossible not to suffer from “scanxiety” as scans, tests or biopsies loom. I search for distractions: trying out a new recipe, watching a movie. A good book can provide a voyage away from myself into another realm.
Unfortunately, it fails to transport me on the day one of my daughters, who inherited the BRCA mutation [which heightens the risk for several cancers, particularly breast and ovarian cancers], goes into the hospital for a scan. She is among the previvors: survivors of a predisposition to cancer. I have resigned myself to the fact that the day of her testing will be given over to fright.
Q: Most people run from conversations about death. In what ways has facing death brought you clarity or comfort?
A: Like Buddhists and hospice workers and activists for medical aid in dying care, I believe that anticipating and preparing for one’s own death paradoxically leavens morbid perseverating, especially when it puts us in touch with networks of people also contemplating their proximity to the cusp of existence. Which is why I continue to attend twice-monthly meetings of my cancer support group. I have had to say goodbye to a succession of friends in the group. Our conversations help me find the praise songs, eulogies and elegies that many of us will want to accompany our dying.
With the time remaining to me — and neither the well nor the ill know how much time they will get — I do not fret about things I have left undone.
Like [Washington Post contributor] Steven Petrow, I seek joy. But, as many philosophers have pointed out, joy can be elusive. It is often a byproduct of activities related to some other goal: baking bread, making a quilt, writing a book. So, despite my physical impairments, I keep busy.
Q: Many patients find it difficult entering through hospital doors — over and over — for ongoing treatment and care. Your description in “Memoir of a Debulked Woman” hit home: “Upon arrival, the Shakespearean stage direction: ‘Enter, fleeing’ echoed like a refrain in my head.” What hacks do you use to endure hospital visits?
A: I hate entering the hospital in which I underwent so many ghastly operations, infusions, radiological interventions, CT scans and blood draws. I bring toys: an iPad (with podcasts and games on it), knitting (socks are especially portable).
Since all of my cancer history occurred in one place, I was lucky to make friends with some of the staff. Until recently, the pleasure of a gabfest with Alesha Arnold, my research nurse, offset the horror of the place; but Alesha died of lung cancer this year.
At my next visit, I will look for the plaque explaining that a fund has been established to honor her: It will sponsor an annual award for nurses who manifest her loving and meticulous caregiving. Then I will sit in the waiting room and remember how Alesha protected me from unnerving responses to my liminal situation.
Patients like me need from our companions what Alesha had: the courage not to sugarcoat our precarious conditions.
I learned from her how to pace myself to the syncopation of fear and hope that accompanies my passage in the perplexing terrain of remission, a borderland between wellness and sickness.
Lisa J. Wise is working on an essay collection about her family and living with third-generation lymphoma. She is vice chair of information and support for the International Waldenstrom’s Macroglobulinemia Foundation.