Marveling at my remission, Jane asks, “Wendy, don't you wish you knew if you were cured?”
“NO!” I respond immediately.
“No?” My friend is shocked.
Actually my answer makes perfect sense, since there are only two ways to know if my cancer is gone for good. If the lymphoma recurs, I'll know I wasn't cured. If my cancer is in remission when I die of something else, I'll know I was.
Many years ago, after my first course of chemotherapy, I considered “cure” the capstone of survivorship. With cure's aura of freedom from the uncertainties of illness, no other outcome could better help me move on.
As health care professionals, we deal with uncertainty all the time. In our hospitals and offices, we strive to minimize ambiguity. I definitely feel better saying, “Ms. Smith, I can reassure you with 95% certainty that….” than saying, “Ms. Smith, I can only tell you with 25% certainty that…”
When caring for patients who are reluctant to proceed with tests and procedures, it's a common practice for us to encourage them by dangling the carrot of certainty: “This loads-of-fun whatever-oscopy will help us know for sure what's causing your problem.”
Whether our evaluation nails down our patient's exact diagnosis or determines only what our patient certainly does not have, our prescription-writing is, at best, a sophisticated game of trial-and-error. If the evidence-based first-choice treatment doesn't work or causes intolerable side effects, we switch to a second-line treatment, and so on. Uncertainty is part and parcel of practicing medicine.
Many of us feel anxious when we aren't sure of the diagnosis or best therapy. Ideally, this adaptive discomfort prompts us to reexamine our patient's case more closely or to consult with a colleague. Once reassured we are doing our best, our composure returns along with our acceptance that diagnoses occasionally remain unclear, and unexpected or unwanted outcomes happen.
My experience as a physician with such uncertainty shaped my early survivorship. I welcomed the surgeries, blood tests, and scans that helped my oncologist accurately diagnose and stage my disease. During the months of chemotherapy, I gladly adjusted my schedule whenever my oncologist delayed a dose, knowing he was walking the fine line between under- and over-treating me.
Satisfying my intellectual desire for certainty by taking steps that optimized my recovery helped me get good care. But it did surprisingly little to calm the anxiety triggered by not knowing what was happening in my body between visits and what my next scans would show. I needed something in addition to the favorable statistical probabilities.
First, I tried expecting the worst, and it made me depressed. Then I tried expecting the best, but the effort of denying unpleasant possibilities was exhausting. So I tried expecting both the worst and the best at the same time, and it just about made me crazy.
The hospital oncology social worker suggested I join a support group to explore techniques for calming the fear of recurrence.
In response, I teased, “Or I could buy myself a CT scanner and do a self-exam every morning. Whadyathink?”
Poker-faced, she responded, “If you think you need a normal CT scan to enjoy your day, aren't you suggesting that everybody needs a daily scan?”
Her message was clear: Illness doesn't make life uncertain; illness simply exposes the uncertainty of life. She was right, of course.
So I joined a support group where I could learn from veteran survivors how to embrace life after cancer. I was still on the steep slope of the learning curve when my cancer came back.
Using typical Harpham sick humor to soften my news, I announced to my support group pals in a borscht-belt New York accent, “I found the cure for fear of recurrence: Go ahead and have one. Then you'll stop worrying about it!”
While everyone laughed, it hit me: In some situations, certainty comes at too terrible a price.
After cancer, uncertainty can create anxiety that steals survivors' joy. As health care professionals, we help our patients by reassuring them that we are doing all we can to minimize the uncertainty associated with their diagnoses and treatments. We also help them by emphasizing the difference between this statistical uncertainty and the uncertainty of survivorship, which is simply the universal uncertainty of life, up close and personal. For those patients who might be struggling, we encourage healing by referring them to resources equipped to guide and support them in their personal quests for calm.
Nowadays—most of the time, anyway—I'm too focused on what's happening today to worry about tomorrow. All my writing and talking and laughing and crying helped me find ways to live well with the uncertainty. That's why, as I told my befuddled friend, when I am in remission and my future is anyone's guess, I really don't want to know if I am cured.
When it comes to living well after cancer, a certain uncertainty is wonderful thing.