My encounter with aggressive intravascular central nervous system B-cell lymphoma in 2000 presented a difficult diagnosis to make, and it was something of a miracle to effect a cure, or “a remission”, which has lasted for over a decade so far. In regard to approaching death, and then suddenly waking up realizing that I have a clean slate and a new life, I am very thankful for the outcome. I know that many of the decisions in this episode were not left in my hands. But why this positive outcome, and to whom do I owe thanks? What were the factors for and against survival, and what has changed after emerging from this ordeal mostly in one piece? This blog chapter tells the story and analyzes the relevant questions. With the help of my wonderful and patient family, I have pieced together the sequence of events. I include an account of the circumstances leading up to my illness, as well as some musings I recorded one month after discharge from the hospital in 2001 that I titled “Life is a Miracle.” Finally, I move on to some heavy thinking about life.
The blockbuster hit at a time when my productive life was running smoothly. As an indication of how this era of golden years was functioning, here is a sample of some of our usual vocabulary. It was a time when our office seemed to be the phone center of the world. After an operation: “With this team we will conquer the world,” or “Why practice unless you can be the best in the world?” or “Instead of dictating an op note, just write the scientific article,” and my usual response to “Doctor, we have a problem,” was “No problem,” because I thought I could solve anything. “Nothing is impossible.”
I felt immortal. Years of leading a wild and abusive life seemed to have no detrimental effect on me. I could drink more, exercise harder, work more, and stay up later than most. I was drunk with the arrogance of success. I felt I was above everybody, and that therefore I could abuse my body without consequences. When I went into physical decline after a mid-life crisis, my brain insisted, “I’ll correct this.” I wanted to turn my chemical clock back twenty years by replenishing my hormone levels. Thus, I sought out the best in the world: Cenegenics, Inc. in Las Vegas, Nevada, where I was prescribed weekly subcutaneous HGH (human growth hormone) injections, bi-weekly intramuscular injections of the Big T (testosterone) and orally administered TSH (thyroid stimulating hormone). To qualify for this hormone therapy, I was required to have frequent prostate biopsies and other tests done on a regular basis. Internist and emergency physician Dr. DiLeonardo conducted the mandatory battery of routine tests. It was purely a matter of protocol.
One of the tests was a neurological assessment for stroke. Dr. DiLeonardo had me hold both of my arms out in front of me, parallel to the floor, and keep in that exact side-by-side position for 30 seconds with my eyes closed. After 30 seconds, I opened my eyes again, and my left arm had somehow dropped below my right. This was a positive result, and the doctor declared an “absolutely infallible diagnosis of stroke.” I instinctively told him, “you must be wrong. There must be something wrong with your brain. Do the test again.”
Dr. DiLeonardo obliged, but this time, I cheated by raising my left arm ever so slightly to compensate for my previous deficiency. I was more concerned about challenging him than about the implications of the test result. It was a sin worse than arrogance. I was challenging science. Once again, I was guilty of overconfidence and supreme arrogance. I returned to California assuming the guy was just plain wrong. It was late 1999 at this point, and I thought nothing of it.
Then summer 2000 arrived, along with the first prodromal symptoms: a tight feeling in the head without the excuse of EtOH the previous evening… Fainting without obvious cause while carrying a four by four while constructing a grand children’s clubhouse in Burlington, Vermont… Becoming lost visiting a rest room in Key West, requiring an all-points bulletin to find the poor guy… I found myself unable to write the letter “G” in cursive… In a report I was describing surgery results to a gender dysphoria penis reconstruction patient at the University of Vermont at that time a blockbuster hit. I kept thinking, “where is a neurologist? I need to see a neurologist.” I have little memory of the period 25 November 2000 to January 10, 2001, although occasional cameo experiences were not altogether erasable from memory.
My initial diagnosis was by the brilliant internist, Dr. Donald St. Claire, my life-long colleague: “The usual depression that follows retirement.” But he added, “I do think an MRI is indicated.” The results of that MRI showed more than the usual little infarcts common in a 66-year-old brain.
The second consultation and diagnosis was via a brilliant neurology colleague, Dr. Adornato, who asked me in his testing to recite poetry for him. I showed off by giving him the first lines of the Odyssey in Greek; in a way, this was cheating once again. He said, “Don, you look like your old self, my friend, and still poco loco. I happen to know the radiologist who read the MRI—she always over-reads these tests and I will ask her to reverse the diagnosis to normal.”
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