I experience countless emotional moments as I hear from myeloma patients and caregivers from around the country and sometimes, around the world. I wanted to share an exceptionally personal one with you here today.
It’s hard to believe that we’re only three months away from the 3rd Annual Pat’s Myeloma Beach Party. The event is a “party” in name only; there will be 15 myeloma experts on hand to address topics that last year’s attendees and readers feel are most important to them.
How much money would it take to cure multiple myeloma? 50 million? 100 million? With some off-the-charts luck, we’ll know in just over an hour. For the first time ever, I’m playing Powerball. The one time payout on the 1.5 billion dollar jackpot: 930 million dollars.
It’s official. We didn’t win the Powerball jackpot. One of our tickets did match three numbers, so I should get most of my $20 back. Turns out there were three winners, so there “only” would have been 300 million available to donate for myeloma research. It would have been fun to see what kind of difference 300 million could have made, wouldn’t it?
A lot has happened since I ran two of the final installments about the importance of controlling blood glucose by Danny Parker:
Slider by IWEBIX
Posted on March 26 2016 | 981 views
We will all be meeting in Fernandina Beach, FL next Friday already! The excitement continues to grow as we continue to get everything in place.
Posted on March 22 2016 | 884 views
Can you believe it? In 10 days, we will all be gathering for the 2016 Pat’s Myeloma Survival School in Fernandina Beach, FL. We are so excited to see everyone and share great information for both patients and caregivers from our amazing speakers. We are looking forward to spending time with all of our friends, old and new and remembering all the fun we have while we are there! Also, a part of the weekend is our fun 5K Beach Walk and a Silent Auction with unique items from all different geographical areas. Registration is only $60/person and includes access to all speakers and activities, 4 meals and a swag bag. If you have not registered yet and want to join us for this unforgettable weekend, you can still register here:
Posted on March 09 2016 | 1,332 views
Posted on February 25 2016 | 2,196 views
Pat’s Beach Party Memorial is now Pat’s Myeloma Survival School, and before he so tragically left us, he put together an outstanding program for the newly diagnosed and long term myeloma survivor. As only Pat could do, he has lined up some of the best and most knowledgeable myeloma doctors and patient advocates to present the World of Myeloma According to Pat.
Posted on February 22 2016 | 2,342 views
Posted on February 12 2016 | 6,139 views
Posted on February 08 2016 | 11,478 views
The commonly used name here for plasmapheresis is plasma exchange. I”m being hooked up for my third, three hour round of plasma exchange. Honestly, I’m in pretty bad shape.
Posted on February 06 2016 | 3,773 views
Plasmapheresis and dialysis on the same day? My body is buzzing; literally buzzing. But it all seems to be working.
Posted on February 06 2016 | 4,155 views
As difficult as my myeloma journey has become, the one silver lining has always been my excellent kidneys; no worries on that front. That all changed today. I learned today that my kidneys are/have failed.
Posted on February 05 2016 | 2,890 views
I’m a medical mystery. Why should I be surprised? Some of the medical news is good. But overshadowing basic improvement are a long list of unanswered questions. I’ve never had more blood drawn in my life!
Posted on February 04 2016 | 2,330 views
Ongoing struggles recovering from my second stem cell transplant in six months make it easy to write compelling posts. But enough already! I was admitted to our local Baptist hospital last night after an emergency room visit that revealed I had pneumonia that was getting worse by the hour.
Posted on February 02 2016 | 1,703 views
MedPage Today reported on a new, retrospective study involving Kyprolis over the weekend. It makes my myeloma specialist, Dr. Tricot, look pretty smart for using Kyprolis as part of my three drug post transplant consolidation therapy.
Posted on February 01 2016 | 2,113 views
It’s been 100 days since I received an infusion of over 8 million of my own stem cells in October. Even though it was my second stem cell transplant in less than six months, this is uncharted territory for me.
Posted on January 30 2016 | 2,070 views
Back in December I experienced an unpleasant ordeal after I was blindsided by C. diff while traveling to the University of Iowa for follow up tests ten weeks after the second of my two stem cell transplants. But as those close to me know, there was a comical edge to my experience. Yesterday I discovered the transcript of a post I’d started, highlighting my crazy experience in Iowa City. Here’s an inside look at my “out of my clothes” experience.
Posted on January 29 2016 | 2,314 views
I’m always writing about a new myeloma hero that I’ve met–or someone that we’ve lost. Sounds like Cure Magazine is determined to identify and recognize them. They even use the term, “myeloma hero.”
Posted on January 27 2016 | 1,402 views
An amazing over-the-top (pun intended) multiple myeloma awareness and fundraising mountain climbing adventure scaling Mr. Kilimanjaro sponsored by the MMRF:
Posted on January 25 2016 | 2,044 views
Not to say that there weren’t hiccups, but I was administered my Kyprolis IV late this morning. I took 40 mg dex, and 3 mg pomalidomide, after I learned my platelets had recovered enough to proceed. I tried to get a few things done this afternoon, but basically passed out.
Posted on January 24 2016 | 2,011 views
Friday the FDA expanded it’s approval of how and when carfilzomib (Kyprolis) can be used. Trumpets sounded. I counted eleven industry news outlets that led with the story. My reaction? Big yawn.