Last time I was in Boston, Dr Andrew Wagner mentioned a handful clinical trials. Of those, we agreed that Crizotinib would be best for me. Since then Shannon, Heather, Jennifer, Ryan, Makiko, Aunt Bo and Dr. O’Keefe have gathered a lot of useful information. Most significantly, data on 12 patients with CCS that have enrolled in the Crizotinib trial; 3 achieved stable disease. Only about 50 people in the United States are diagnosed with CCS each year. Therefore, there are not a lot of cases to work from or statistical significance to these numbers. However, from the best information we have, Crizotinib appears to have only a 25% success rate. I can’t turn my back on that; I want to live! I always liked being the underdog and coming through with a surprise victory.
Today we once again said goodbye to Aaron, Elisa, Kayla, and Ashlyn and headed back to Boston. We were able to get my clinical trial moved up by about one week; this could be significant. We flew out of New Orleans, had a layover in Atlanta, then arrived in our final destination of Boston. Flying is already a burdensome form of travel these days with the heightened security and cost saving measures of the airlines. Add a swollen and sore leg and it makes standing in lines, being cramped between tight seats, and long walks between terminals all that much more frustrating and difficult. However, I am fortunate that I am not experiencing the pain and nausea that Chris Roberts (CCS Friends) experienced.
George and Christine have been so amazing and again offered their nearby condominium and vehicle to support my appointments. This is huge, we can’t thank you enough! On top of that, they treated us to another delicious dinner, George’s lasagna. Over dinner we reminisced on a lot of stories. My favorite:
Me and my brothers had been skiing at Swain Ski Resort. At some point I made a call home to Mom from Swain. A woman answered the phone, and it didn’t sound like my mother. “Mom?” The voice on the other end of the phone responded equally confused. I immediately recognized the voice as Christine, who was at home in Albany. To this day I don’t know how I called Christine’s number; I didn’t have her number memorized? It must have been some crazy configuration of the switchboards. Although not the mother I intended to connect with, Christine has always been very much a second mom.