Pah-tay-to, pah-tah-to. What's the big deal about what cancer patients call themselves?
Everything. Labels speak volumes about who we are and how we see ourselves after a cancer diagnosis. So it hit me like a rotten tomato when a longtime friend and co-survivor hinted that “Healthy Survivor” was just one more name thrown into the survivorship ring.
I was surprised because we both knew the time for choosing a label had long passed. Decades earlier, the oncology world had declared “survivor” the winner of the impassioned naming war among “thrivers,” “victors,” “patients active,” and others. And neither of us doubted that “survivor” was here to stay.
Her comment also caught me off guard because I've consistently hailed “survivor” as an ideal word to capture both the all-inclusiveness and continuity of survivorship “from the moment of diagnosis and for the balance of life” (Charter, National Coalition for Cancer Survivorship; 1986).
If “survivor” was perfect, why add “Healthy Survivor” to the lexicon? Because the inclusivity that made “survivor” perfect for pushing the patient advocacy movement forward is what limited its usefulness to me as a patient. I was a survivor regardless of what I thought, felt, said, or did. Consequently “survivor” did nothing to inspire me to meet the challenges of my illness.
Usually when I don a hat—“student,” “doctor,” “wife,” “mother”—I modify it with a qualifier that motivates me to excellence. From my first day of medical school, I've strived to be a compassionate doctor. From the moment my husband slipped a gold ring on my finger, I've done my best to be a devoted wife. From the earliest cry of my firstborn, a good mother.
As a newly diagnosed patient, I reflexively vowed to be an effective patient. And that worked fine during my chemotherapy and first remission, throughout which I tried to put cancer behind me.
Then recurrent lymphoma wrecked my sense of self along with my hope for a cure. While dismantling my office between radiation therapy treatments, I took comfort in seeing myself as a survivor, not a victim. But one question nagged me incessantly: What kind of survivor do I want to be?
As if on cue, one of my old spiels started replaying in my head, the one I'd often used for patients with chronic disease. “Our goal is for you to be as healthy as possible,” I remember saying, “so this office and I can be the furthest things from your mind for as much time as possible.”
Then I started flipping through my mental Rolodex of patients, inspired by images of those who'd lived well within the constraints of their illness. Beyond complying with therapy, they had figured out how to escape fear and anxiety when living with a relapsing and remitting disease. Or they'd learned to grieve losses so they could see what remained, recreate themselves and once again feel whole.
“Effective patients who embrace their life are what?” I challenged myself. “You'd call them blankety-blank survivors,” I prodded. Like a PR executive brainstorming a brand name or slogan, I suddenly realized the answer had been right in front of me all along: “healthy.”
Putting “healthy” to the test, I easily rattled off nouns and gerunds routinely prefaced with “healthy” to indicate a wholesomeness that engenders good outcomes: healthy lifestyle, healthy attitude, healthy relationships…healthy living, eating, parenting, financial planning.…
In a wide variety of everyday settings, “healthy” inspires excellence without demanding perfection. And it does so seamlessly over time as new challenges arise and people's repertoire for responding evolves.
Hallelujah, I'd found my label. Healthy Survivor: A survivor who gets good care and lives as fully as possible.
It's been almost two decades since I first became a practicing Healthy Survivor. Just as when I was a practicing physician, it is a work in progress and always will be.
Imagine the healing that could take place if you saw each of your patients as a potential Healthy Survivor. You'd discover new ways to offer comfort, advice and encouragement when the going gets rough. For example, you could reassure patients that they can be Healthy Survivors even while:
- Feeling overwhelmed, because it takes time for Healthy Survivors to learn what they need to know.
- Asking for help, because for Healthy Survivors it makes no difference whether they do the right thing on their own or with lots of support.
- Experiencing unpleasant emotions, because for Healthy Survivors what matters most is not what they feel, but what they do with what they feel.
- Dealing with complications, setbacks, or recurrences, because Healthy Survivors continue to get good care and live as fully as possible, no matter what is happening medically.
- Choosing to stop treatment and enter hospice, because Healthy Survivors are defined by how they live (and not how long).
But take note: Patients have to want it. They have to choose it, because getting good care and living well can be challenging after cancer. And patients can't do it without your guidance and support.
As clinicians, every day you strive to help patients land on the good side of the statistics. Yet despite your best efforts, patients suffer side effects, complications, and aftereffects. Even when everyone does everything perfectly, patients die.
As we look forward to the day when oncologists tailor all therapies to patients’ genomic fingerprints, let's remember that we don't have to wait for these advances to deliver personalized medicine. As I told my friend who thought “Healthy Survivor” was just another name, if clinicians encourage each patient to be a Healthy Survivor, we can begin the healing right now.