The Diagnosis

November 2, 2010, Yardley office -  Dr. Kennedy told us Jeff has a "very serious" diagnosis:  5q- Syndrome, Myelodysplastic Syndrome - Refractory Anemia with Excess Blasts.  It is incurable.  It is not Leukemia but may turn into Leukemia.  She patiently reported numbers - his blasts, for example (18%) - and their significance.  She told us that Jeff's case is "a puzzle," because this disease is usually seen in old men who had been exposed to benzene or radiation.  Jeff's counts are like those of someone who has had the disease for many years and yet Jeff's blood was normal two years ago when he had a physical.  We told her about Jeff's first career in drycleaning where he used perchlorethylene, not benzene, and the second-hand smoke he had been exposed to at the drycleaners and growing up.  She was not convinced that perc or second-hand smoke would have been the culprits but admitted there really is no way to know.  Jeff and I both did pretty well in hearing and processing this dire news and still remaining receptive to the information she continued to give us.

When the conversation turned to treatment, she said that she had consulted a specialist at the University of Pennsylvania, Dr. David Porter, who spent a lot of time with her on the phone discussing Jeff's case.  Together they came up with a plan which would include drug therapy - azacitidine - through her office which would only begin once we had made arrangements to see Dr. Porter at Penn.   Dr. Porter would do Jeff's bone marrow transplant which Dr. Kennedy told us is "certainly in your future."  She said the goal of the treatment would be to "turn back the clock."  She asked whether Jeff had siblings and winced when he told her they were all older than him.  Dr. Kennedy gave us a link to the Leukemia Lymphoma Society website and encouraged us to read nothing online that wasn't very recent.  She also warned us that some of our loved ones will want to recommend oncologists they'd heard about and explained the reasons she was recommending Dr. Porter for Jeff's particular diagnosis.  We went home laden with brochures, pamphlets and anxiety.

That night we called our families to share the news.  Jeff spoke with his siblings, laughing as he asked them for their bone marrow.  Paul, Debbie and Greg all graciously agreed to be tested for a match to Jeff.  Meanwhile, I spoke with my sisters giving them "just the facts ma'am" until they expressed their concern and then I would sputter and cry.  Jeff held my hand as we each held phones to our ears.