I was jogging one day while on a business trip in LA and collapsed during the run. Within hours, I was at the hospital at UCLA Medical Center on a gurney headed for a CT scan of my abdominal cavity. I remember telling the ER physicians that I was a doctor and recommending my own course of action. As my advice to the ER doctors went largely ignored, I realized, at that moment, that being a doctor myself really didn’t matter.
I wasn’t a doctor anymore. I was a patient.
That was almost a year ago. At the time, I recalled that The Archives of Internal Medicine had published a much-discussed study that revealed doctors might recommend different treatments for their patients than they would for themselves. They were far more likely to prescribe for patients a potentially life-saving treatment with severe side effects than they were to pick that treatment for themselves. Yes, doctors were much more willing to risk their patients’ lives than their own; they were much more willing to gamble with their patients’ lives than their own.
Understandably, people are worried that these findings mean doctors know something they’re not telling their patients. But my own experience with illness taught me a simpler truth: when it comes to their own health, doctors are as irrational as everyone else.
I was diagnosed with stage III stomach cancer. I knew that the diagnosis was bad news; I’d seen the disease and its consequences many times while wearing a white coat, a stethoscope dangling from my neck, at a patient’s bedside.
At the beginning, I knew intellectually what was in store for me. I reluctantly allowed myself to be a patient, to trust my doctors and to let them lead me through the treatments and complications and side effects that rolled out with alarming regularity. I submitted to a brutal treatment regimen that had not changed much in over 40 years.
I soon realized I had no idea what kind of rabbit hole I had fallen into.
For my doctors, it was all about the numbers, the staging of my cancer, my loss of weight and strength. For me, too, it was about the numbers: the number of steps I could take by myself; the number of people I counted that passed by our bedroom window; and how many hours I could stay awake before sheer pain and exhaustion set in.
But it was also about more: my world progressively shrinking to a small, sterile, universe between the interminable nausea and the chemo brain that left my head both empty and feverish — between survival and death.
By the reckoning of my physicians, survival was a percentage, and a horrible one — fifteen to seventy percent if I completed the treatment regimen. That seemed to be an incredibly wide spread. More and more I found myself thinking about percentages. If I completed the regimen and the disease returned, there were seemingly no other viable treatment options. It was morphine and palliative care. I was 39 years old. Death was a 100 percent certainty, eventually. So did it matter?
During one particularly desperate moment, I decided that I had had enough. I refused further treatment. I lay in my bed without anxiety, comfortable that I had made the correct decision. I watched the events around me, including the distress of my husband, Brian.
My doctors couldn’t override it or persuade me to change my mind, but, luckily, my husband, Brian, could and did. From my mental cocoon, Brian was by my side convincing me to finish treatment.
My dreams of dying were not the products of anxious moments of terror. I was simply incapable of making the right decision for myself. My doctors were professional but ultimately could not decide for me. When neither doctor nor patient can make the right decision, it is vital to have a caring family member advocate on your behalf. Without Brian, and his tireless commitment to my recovery, I wouldn’t be here today.
While I am still battling cancer and have not yet returned to work nor am I leading a normal life, my illness has changed me profoundly as a physician. No amount of doctoring can prepare you for being a patient. During the past year, I have endured multiple treatment methods, metastasis, and most recently the discovery of a brain tumor that threatens my eyesight. The past year has been full of the most vulnerable moments in my life.
If anything, it’s that recognition of vulnerability as well as expertise that makes me a better doctor today.
Jennifer Kelly is a molecular geneticist and oncologist.
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