What we learned in Boston

Rose and I traveled to Boston per the recommendation of our medical insurance to consult with doctors at Boston University about the prospects of receiving further treatment for my Amyloidosis through a clinical trial. Boston University has one of the most developed programs for treating people with Amyloidosis in the country. Upon entering the waiting room before starting my first of two days of tests, I met my first Amyloid patient. She had a less aggressive form of Amyloidosis that was affecting her lungs. She had been handling the disease for 10 years. As I was among other patients with Amyloid, it felt good to be, as one oncologist put it “part of the herd” rather that the only one in the hospital with the disease. When I moved from the waiting room into the clinic, I mentioned to the nurse I was slightly light headed. She said all of her Amyloid patients with cardiac involvement were light headed. I wanted to hug her. I felt like someone spoke my language and understood my disease. For two days I was x-rayed, poked, cored (bone marrow biopsy), walked stairs (pulmonary stress test), had an echo-cardiogram and interviewed. These tests would determine my eligibility for a clinical trial and to see if I was well enough to undergo the stress of a second bone marrow transplant. I learned one of the unfortunate realities of the disease is the damage it does to the autonomic nervous system or the nerves responsible for bodily functions not consciously directed, such as breathing, the heartbeat, and digestive processes. One area that may have been damaged by the Amyloid is my eyes muscles. I learned pupils are not dilating or constricting between dark and light areas. Also my eyes do not track precisely at times (one will drift slightly). Sometimes I see better when I cover one eye when reading. A friend told me if I start to wear an eye patch and look like a pirate, I will need to get the ear ring too. The doctors in Boston will communicate on their recommendation with the oncology team at the Seattle Cancer Care Alliance team that have been responsible for my work up to date.

While in Boston, Rose and I got out to take in the history of the city. I was best suited for the tourist bus ride and harbor boat tour. We had a chance to get down town and see the Boston Common, the Old Church, the location of the Boston Tea Party, and the USS Constitution or "Old Iron Side." Also we saw Fenway Park (home of the Red Sox), Boston Garden (home of the Bruins and Celtics) and the finish line for the Boston Marathon. The last day we were in Boston we went to the John F. Kennedy Presidential Library.