All the experts—infectious disease, allergy, cardiology, even my usually unstumpable chief of internal medicine—were puzzled by Rita Sue. Timely resuscitation had saved her, but nobody had a clue what had caused her thready pulse and undetectable blood pressure. Curbside conversations hadn't been that animated about something other than Medicare reimbursement in years. The buzz was energizing, but the link between our mystery and Rita Sue's misery disturbed me.
Most health care professionals I know like challenges. Patients' symptoms prompt our puzzle-solving evaluations and prescriptions. We feel the heady power of medical knowledge when what is frightening or confusing for our patients is ho-hum for us. Walking the well-worn steps of treatment algorithms fills our souls with satisfaction when our patients get relief.
What happens, though, when we deal with patients who have problems that don't fit neatly into any category or who complain of side effects not listed in the PDR? Backpedaling, we retake the history, scour textbooks, and, when needed, bring in consultants. Hopefully we won't let up until we find the answer.
For patients, mysterious symptoms are more than puzzles to be solved. I know. After learning that I had cancer, my oncologist explained that I had a garden variety of lymphoma, a fact I found reassuring (because I didn't want to be “interesting” like Rita Sue). Over the subsequent months, I took comfort in knowing that my day-by-day adventure through chemotherapy was an everyday routine for my doctors and nurses.
I first tiptoed into “interesting” territory—actually, my abdomen was the starlet—when my CT scan was published alongside the results of an early-phase trial in which I was a subject. Small arrows pointed to the shrinking lymph nodes. The longer I kept outliving my prognosis, the more interesting a patient I became, in a nice sort of way.
Alas, my remarkable survival has not been all fame and fortune. Along with my growing stacks of CT scans, I have acquired a small menagerie of symptoms, some of which are, for lack of a better word, odd. One day I decided to ask my oncologist, “Do any of your other lymphoma patients tell you they have this?” He shook his head with a sympathetic half-smile.
I'm okay being the only patient my doctor has ever seen with my weirdo symptoms. I'm okay living with the symptoms, too. Even though they affect my quality of life, none are life-threatening. I really don't think much about my discomforts anymore, a reality that may be hard for healthy people to believe. Just the same, all other things being equal, I wish my oncologist could answer, “Yes, Wendy, quite a few of my lymphoma patients have your symptoms.”
Physicians naturally exude confidence when facing familiar and treatable disease, no matter how acute the situation. Patients who fear they are imagining their symptoms (or think they are going crazy) can let go of these worries after learning their symptoms are common. They can look to their physicians, who, in turn, can dig into databases that allow projection and planning. The sense of knowing the enemy sows seeds of hope—the patients' and their physicians'—in the soil of options and actions, even when no known cures exist.
Being a physician-survivor has advantages: I'm skilled at detecting and describing symptoms, and I enjoy an insider's confidence in my doctors' expertise. The accuracy of my complaints is never an issue, albeit the unavoidable bias of subjectivity. I'm sure of this because my oncologist's words and actions reaffirm he knows my symptoms are real. His unfailing concern at each visit reassures me that the unsolved puzzle is important and won't be forgotten or ignored. For now, there just are no answers.
Years ago, Rita Sue got well and was discharged from the hospital without a definitive diagnosis. Her anxiety over the possibility of another event was dispelled when, more than a year later, I was reading a case report in the New England Journal of Medicine and enjoyed a Eureka! moment: “This is it! This is what Rita Sue had!” Sure enough, we retrieved a tube of Rita Sue's frozen blood and proved the diagnosis. No longer “interesting,” Rita Sue has remained compliant with the steps we now know can help prevent another episode.
Variety may be the spice of life, but a patient's puzzling symptoms can stir an unsettling sense of uncertainty about one's future and one's self. The longer my odd symptoms persist, the less likely they will resolve by themselves. But, who knows? Maybe they will. Maybe, as happened for Rita Sue, their cause will be uncovered and treatments discovered. I can hope. In the meantime, my oncologist keeps caring, and he keeps looking.
This morning I received a unexpected letter. “Dear Dr. Harpham. I just read an article about you. I felt like they were describing me! Hearing your story made me feel better. Thank you for sharing it.”
Her letter changes nothing about my situation. Yet adding it to my file makes me feel less alone and one patient closer to my oncologist's Eureka! moment regarding me. And today, that makes me feel better.