Multiple Myeloma- Dancing In the Rain with MyelomaTeacher

On the third Thursday of each month I sit on UPenn's Institutional Review Board.  I am the non-scientific, unaffiliated member of the board.  My job is to be the secondary reviewer on initial protocols brought to the table. I provide the voice of the patient.  I believe its a very important role, Doctors and medical professionals can review the safety data and the scientific nuances of each clinical protocol, but only a patient can understand what another patient may be thinking and understanding when clinical trial options are being discussed. The scientific members of the board allow me to speak openly and ask questions, respect my opinions and often thank me for bringing something to their attention that I as a patient would want clarified in the informed consent.  Here is a blog I wrote over a year ago describing my experiences my first day as a voting  board member.  As I was driving down the crowded highway on a rainy Thursday morning I was ...

A lot can happen in three days. I could drive from my home in New Jersey to California in 3 days.  In the New Testament Jesus told the Jewish populace at the Temple, “Destroy this temple, and I will raise it again in three days."  It will take three days to have the hardwood floors in my home refinished. It never occurred to me that when I hung up the phone after chatting with Pat Killingsworth three days ago it would be the last time we would be chatting.  Pat was a blogger, a mentor, an advocate, but most of all a dear friend.  I met Pat several years ago at a Patient Ambassador training and grew to admire him the more I got to know him. Pat's mission was to educate the myeloma community.  He accomplished that and much more through is blogs, books, speaking engagements and his beloved Beach Party. Pat was an unique individual. He put others above himself.  He blogged EVERYDAY. Pat often pushed himself to publish a blog post from his hospital bed...

I'm sitting here in a fog.  Everything seems so surreal.  One of my good friends, and most dedicated myeloma advocate I know is fighting for his life.  I feel helpless.  I spoke with Pat Monday night.  I knew he was having some set-backs, but his spirits were good and I thought this was just another detour in the road.  He told me about his kidney failure and how he was going to dialysis almost daily. When I asked him if he watched the Super Bowl he joked that they came to get him for dialysis minutes before the game started so he watched the game hooked up to the dialysis machine. No chili or nachos this year. Then Pat proceeded to tell me that he was having plasmapheresis also know as plasma exchange.  He said that they suspected something called TTP to have caused some abnormality in his blood. The doctors at the hospital he was at were testing for TTP, but started the plasmapheresis since this is how TTP is treated.  Pat joked that the plasmap...