Wednesday, January 21, 2015

Fountain of Youth

“Rudy! You found it!  You found it!  It does exist!” exclaimed Henry McFarland as he burst through the door, entering the examination room that my wife and I were in at the Clinical Center at the National Institutes of Health.  “Tell me where it is!  You gotta share!  You found it!  You gotta tell me where it is!”  My wife and I exchanged quizzical glances.  THIS is Dr. Henry McFarland?  THIS is NIH’s expert and lead multiple sclerosis researcher? “Tell me where it is! You found the Fountain of Youth!”  He had not lost his mind after all.  “You must be thinking of my father,’” I replied with a grin of relief.  Roughly twenty years earlier, my dad, Rudolph Raymond Yanuck, Jr., and two of his sisters with MS had traveled to NIH and saw Dr. McFarland.  As an icebreaker, Dr. McFarland’s joke was to put me at ease.  My name is Rudolph Raymond Yanuck, III.

It was Monday, October 24, 1994.  Two days earlier I had seen Admiral Kurtzke who had officially given me my “death sentence,” multiple sclerosis.  By “death sentence,” I don’t mean I’m going to die OF it.  I’m going to die WITH it.  Multiple sclerosis will not itself make my life any shorter, it just might make it miserable.  But to quote Richard Cohen, husband of Meredith Viera, formerly of “The Today Show”, MS survivor, and former CBS producer, “a miserable life is better than no life at all.”

The appointment went much like the one with Dr. Kurtzke.  Dr. McFarland reviewed my medical history, test results, and performed a neurologic examination, only this time there was no audience, lecturing, or “pimping” of medical students, an acronym for “put in my place”.  There was only me, my wife, and Dr. McFarland.  Dr. McFarland’s treatment advice differed from Dr. Kurtzke’s.

Interferon beta-1b, also known as Betaseron, had recently been approved by the FDA for the treatment of multiple sclerosis as the first disease modifying medication, self administered by subcutaneous injections every other day.  It was not a cure, but slowed disease progression, something not available to previous generations of MS patients.  Dr. Kurtzke felt that since my disease was not yet disabling, I should wait until that time when disability emerges to begin Betaseron.  Advice I liked.  Dr. McFarland was of a different opinion.  His advice was to begin betaseron “yesterday”- a prospect I did not relish ( I did not like the idea of every other day injections - yes, even doctors can be afraid of needles.  So we made a deal.  If a gadolinium enhanced MRI showed active disease, I would start treatment.  If active disease was not seen, I would postpone treatment as Dr. Kurtzke recommended.

A few days later, for the second time of many, I lay supine on the MRI table with a cage placed over my head looking like a hockey goalie or baseball catcher.  The table slid into the scanner,  positioning my head and body in the narrow opening.  “!-!-!” went the scanner, then silence.  Suddenly a loud “gnweuew”, followed by “dupt-dupt-dupt-dupt-dupt-dupt, blop-blop-blop -blop-blop-blop-blop, doof-doof-doof -doof-doof-doof-doof, rat-tat-tat-tat tat-tat-tat.”  The cacophony would have been deafening without the headphones on my ears.  Then silence.  A few seconds later the second cacophonic movement began.

“Active disease seen.”  Let the misery begin.

No comments:

Post a Comment