Saturday I shared a link to an interview Jenny Ahlstrom did with me the second day at ASH. Can’t get enough of me unabashedly sharing my opinions about myeloma therapy options on video? Then fasten your seatbelts! CLL survivor and dear friend, Carol Preston, interviewed me at ASH for Patient Power.
The link below should take you straight to the video. But it may ask you to register and/or sign in to watch. Andrew Schorr, Carol and the Patient Power team do a superlative job capturing important myeloma related news and views on video. Most leading myeloma specialists have worked with Patient Power. And sometimes, the team follows up with myeloma patients, too. You know I think that’s important. Patient’s perspectives are invaluable to help doctors and nurses understand what’s important to us.
If you’re concerned, I wouldn’t hesitate to register on Patient Power. I get an email or two a week, but no one will pester you. And there’s so much good content from a who’s who of myeloma stars: Doctors Anderson and Richardson at Dana-Farber, Dr. Orlowski at M.D. Anderson in Houston, maverick “avoid transplanting whenever possible,” Dr. Berenson from L.A. and a host of others on the cutting edge of myeloma therapy.
I decided to do the interview without a hat and mask. I’m self conscious about the bumps on my head. Someone asked me if they were the cancer. No, just cysts that I never had removed. I’ve always had a full head of hair and they’ve been covered up. I may have done something about it had I known I’d be bald and hairless for over six months.
I wear my mask religiously when I’m out and about. And a hat to protect my shiny noggin from the sun. I was never a hat person. But now I don’t go out without one. Helps keep me warm, too. It can get drafty up there!
Feel good and keep smiling! Pat