Editor's Note: This is the first in a series of articles written by San Antonio anesthesiologist Jay Ellis, MD, a member of the Bexar County Medical Society Communications/Publications Committee. The series, published monthly in San Antonio Medicine, examines the physical, emotional, financial and spiritual burden of life-threatening illness
I am going to pass out. It won’t be my usual bending over and gasping for breath after running. It won’t be one of those orderly Victorian-era swoons where you collapse into a neat pile, either. It will be a full-on, face-plant, facial fracture, call-911 loss of consciousness. I quickly drop out of my class run and sit on the curb with my head between my knees. The near-syncopal episode passes, but I am left with an overwhelming sense of fatigue and weakness. How did I get so out of shape? I have been doing this exercise class every week for almost 10 years. Is this God’s way of telling me 57-year-old men shouldn’t try to run with 30-somethings? I barely have enough energy to walk back to the locker room to dress and go home.
Two days later the pain starts. I notice it when I awaken one night … or did the pain wake me? It feels like gas, and straining to have a bowel movement seems to make it better. Over the next few days the pain increases in frequency and severity. It seems to get better with some acetaminophen. Other than this new fatigue, I don’t feel ill. I have no fever and my appetite is good, but this pain seems to be getting worse. As the days go on I’m taking acetaminophen more and more frequently and using naproxen. I walk into the office and my partner, Jim Growney, notices my pain and asks what’s wrong. He chastises me for not getting it checked out. He’s right. I need to stop this Dr. Denial act. I may have diverticulitis. I’ll just go over to the Methodist ER, get some antibiotics and go home.
I walk into the Methodist ER, and Miriam Fox, the nurse manager, recognizes me and gives me the VIP treatment. She and her nursing staff couldn’t be more professional or more competent. Dr. David Hnatow, the ER physician on call, examines me and agrees I need a CT scan of the abdomen. I get my lab work done. The ER staff apologizes that I have to wait for the CT scan while it is used for the stroke protocol. I thank them for their courtesy and tell them not to apologize for doing the right thing. They want to take me over to the CT in a wheelchair, but of course I insist on walking. They indulge my whim, and I get my CT scan.
In what seems like a short time, Dr. Hnatow returns and pulls up a chair. This act, of course, is what we all do when we are about to deliver bad news. He goes over the numbers. My white count is 60,000, my hemoglobin is 8.7, and my platelet count is 54,000. (I think to myself that taking the naproxen doesn’t seem like such a good idea anymore.) My CT scan shows a large retroperitoneal mass, splenomegaly with lucent lesions in the substance of the spleen, and retroperitoneal lymphadenopathy. He goes over the differential diagnosis, but I already know the result. I was diagnosed with chronic lymphocytic leukemia (CLL) five years ago, and I hit the jackpot. One in 20 people with CLL will experience a Richter’s transformation and develop lymphoma. I’m in the top 5 percent of my class. The CLL was a nuisance, but the lymphoma will kill me if not treated. I silently berate myself for ignoring my symptoms for so long. What if my platelet count had been 20,000?
I return home and explain the results to my wife, Merrill. She is already angry with me for going to the ER without telling her first. I explain to her what we need to do next. I will call my oncologist, Dr. Greg Guzley, in the morning and get set up for treatment. I then turn to the medical literature to get an estimate for my prognosis. The initial data I read on Richter’s transformation is not reassuring. The data on lymphoma is better. I read the numbers to Merrill. There is an 80 percent chance I will be here in three to five years. There is a 50 percent chance of cure. She asks me to stop. I am upsetting her, and she is right. Statistics apply to populations, not to individuals. I will not be 80 percent here in three to five years. I will not be 50 percent cured. My outcome is binary. I will or I will not survive.
Up Next: Preparing for chemotherapy.
Jay and Merrill Ellis celebrate Thanksgiving in November 2013 following Dr. Ellis' chemotherapy. Courtesy photo