The Story of My Leukemia

Dear Friends and Readers,

I can’t begin to tell you how happy I am to resume writing about EHR user interface design and to share my ideas with the HIStalk community. I am grateful for this opportunity. By all odds, in the long view of human history, I should not be alive.

In the fall of 2013, while jogging I noticed that my exercise tolerance had decreased – I couldn’t run up a hill which a few months earlier had presented only a slight challenge. At the time, I attributed the change to just getting older. A little later, however, after climbing a single flight of stairs at work, I found that couldn’t utter a sentence without first stopping to catch my breath. Although I was still in denial, I reluctantly took time off from work to see a colleague of my PCP who was available that afternoon.

Although I had minimal findings on physical exam and my ECG was negative, by this time it was clear even to me that something was wrong. My labs were drawn and sent off. A little later that evening I got a call from my primary care doctor and friend. She advised me to go to the hospital to be admitted via the emergency department, as my hematocrit was 18 and I had other hematologic abnormalities as well.

When I asked if I could delay admission until the next morning, the answer was a tactful but emphatic ‘no.’ So with my wife Karen’s help, I packed a toothbrush and a few other things, drove to Mount Auburn Hospital (where I had done my internship 30 years before), and was admitted.

A bone marrow biopsy performed the next day revealed acute myelogenous leukemia (AML). That evening I was transferred by ambulance (although I insisted on walking and carrying my own bag) to Feldberg 7, the inpatient Bone Marrow Transplant (BMT) Unit of Beth Israel Deaconess Medical Center (BIDMC), where I received extraordinary, life-saving care over the next three months.

Quite frankly, when I was told I had AML, I thought it was more or less a death sentence. My last training in AML had been more than 30 years ago when I was a medical student. At that time, the likelihood of successful treatment was very low. My mind went to practical issues such as whether I would have enough time to organize important family documents. It was easier to focus on these kinds of things than wonder how I would say goodbye to my family and friends.

The attending physician on call that week for Feldberg 7, who has since become my trusted primary oncologist, came in from home to see me. By then it was nearly midnight. We had a long talk. Although she did not minimize any of the very real risks of the disease, the induction chemotherapy, or the eventual stem cell transplant if I should get to that point, I regained hope. I learned that my chances not just for life-prolonging …read more