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...

I As I was driving down 95 South to Philadelphia on my way to the American Association for Cancer Research’s Annual Meeting I chatted with fellow advocate Marie Recine about last year’s meeting in San Diego. This was Marie’s first time attending the AACR Scientist- Survivor Program (SSP) although she was no stranger to medical meetings since she is a medical writer and a breast cancer survivor. It was my second AACR meeting.  I was very excited to have the opportunity to participate in the Scientist-Survivor program once again.   The mission of the AACR Scientist↔Survivor Program is to build bridges and unity among the leaders of the scientific, cancer survivor and patient advocacy communities worldwide. After last year’s meeting I made several new connections in the advocacy world, and decided to take steps to educate myself and become more actively involved in the world of research advocacy.  As an outcome of last year’s SSP I created a research advocate profile on the ...

Yesterday I learned  that one of my myeloma buddies, Brad, passed away. I only met Brad in person twice, but I feel like I have known him my whole life. Brad and I were virtual friends we met on Twitter and eventually became Facebook friends  (only special people make that transition from Twitter follower to Facebook friend) I tweet a lot and blog a little. Brad wrote an inspiring blog and tweeted a little. Brad would refer to me as " Teach". I loved that endearing term. It reminded me of my chosen profession, one that I truly loved.  In reality Brad was the real teacher.  Through his writing we all learned many lessons. Brad taught me how to stay positive, be a fighter and to find a way to make a difference. He also taught me the power of the written word.  I am not much of a writer, but I am going to make an effort to blog more, as a tribute to Brad. Rest in peace, Big Guy.  The world is a better place because you passed through.  You taught many wha...

Twitter fascinates me. I started using Twitter out of boredom one day after I heard Hoda and Katie Lee of the Today Show suggest that people follow them on Twitter. At first I was very confused, especially with hashtags #s and @ signs. It takes awhile to learn to read a tweet! Then I realized  hashtags were a way to mark an important idea in a tweet and make your tweet searchable . I started searching twitter using different cancer related hashtags and kept stumbling upon #BCSM. I did a google search and discovered #BCSM stood for breast cancer social media. I decided that myeloma needed a hashtag too! Around the same time I saw a tweet from Dr. Thompson that sparked my interest. “@mtmdphd: Educate Pts & providers about new #myeloma clinical trials using social media – @mcccshine et al #ASCO13 http://t.co/Tf3UXGb36L #ASH13 #mmsm” I tweeted Dr. Thompson telling him I was ready to help him use social media to promote clinical trial accrual. That started the ball rolling for first...

Today I went to the movies with a good friend.  I always look forward to our girl's day out to see the latest flicks. We went to see Still Alice.  Although it was sad I still enjoyed the movie very much.  Julianne Moore definitely deserved the Oscar she won.  I'll write more about the movie in another post. Today I want to focus on how I know I'm in a better place than I was 6 years ago. Six years ago I didn't enjoy going to the movies.  Actually I dreaded going to them for several reasons. I had a hard time focusing.  My mind would wander.  If the movie didn't catch my attention  I would start to think about all that was happening to me and what my future would look like.  I would have a private pity party right there the theater without inviting anyone else. Focusing was not only an issue at the movies, I couldn't focus on reading a novel either. I would re-read the same page several times to try to comprehend what was happening, a...