It has been an amazing week. Thanks so much for all of your congratulatory posts, emails and phone calls. A person’s 59th birthday isn’t normally a memorable one, but my readers have made mine special. But my birthday announcement was just the tip of the iceberg. My visits to support groups in Ocala and Jacksonville were real eye openers for me.
Tuesday I gladly made the two and a half hour drive to speak to Tanjua’s amazing cancer support group in Ocala. Two dozen cancer survivors and caregivers showed up for a southern church style revival style meeting at Howard Academy, a former elementary school now used by the community for meetings and events.
Tanjua opened the meeting with a prayer for us and our loved ones. I wasn’t aware of it beforehand, but here were 7 or 8 breast cancer survivors in attendance as well. Primarily and African American group, the members were knowledgeable, thoughtful and engaged. The food was amazing! Everyone brought something; there was enough to feed a group of 50 or more.
In one short year, Tanja has developed a close knit family, the likes I’ve never experienced. They embraced me and everyone shared their stories. A group of a dozen women plan to make a trip over to Pat’s Beach Party; sharing rooms, making it a real “girls weekend away.” Everyone was so excited! Another older couple (like me, he’s also on pomalidomide therapy) plan to drive over, too.
Anne with the IMF spoke after I did. She shared some helpful tips for managing side effects–a topic we shared–and help to caregivers effective and sane.
I left the meeting feeling warm and energized. I knew I’d made some friends for life!
Last night Dianna picked me up and made her way off the Island and into Jacksonville to Mayo Clinic. Let me pause here and add where else can you be on the beach one minute, and 45 minutes later at a world class cancer center? If we would have gone a different way we would have passed the airport, barely 30 minutes from our home. Pattie and I knew what we were doing when we picked this idyllic spot!
Anne and Dianna have done an awesome job with this group over the years. The meeting was standing room only, and opened with a fun and silly “Mambo for Myeloma” group dance, led by my crazy friend, Gary Petersen. Called the North Florida Myeloma Support Group, Anne challenged other Florida groups to do the same.
Like the Ocala group, a number of members plan to join us at the Party. And there were reports on several other fundraisers in honor of March being Myeloma Awareness Month. Sandi’s Zumbathon in St. Augustine March 7th sounded fun.
Unfortunately, I felt like I was walking on eggshells while talking-up Jenny’s Beach Walk Saturday morning the weekend of the Beach Party. Anne works for the IMF. She does a wonderful job, but unfortunately the IMF has been slow to embrace fundraising efforts for other organizations, viewing them in a competitive, not a collaborative way. They’ll come around.
The exchange of information was remarkable. Tomorrow I’m going to write about the challenges facing us as we try to get important, sometimes life saving information out to those that can use it most.
I could go on and on, but before I forget I wanted to announce an important Cure Talks broadcast this evening at 6 PM. I have listened to Dr. Ghobrial make several presentations. Her energy and commitment is intense. Focused on finding ways to stop early myeloma in it’s tracks, Dr. Ghobrial is a member of our Crowd Cure Foundation initiative to help locate a pair of game changing clinical trials; one to help late stage patients like me, but another to try and fix things before they can get this far.
I spent some time with her at a dinner meeting for the Foundation at ASH in San Francisco. She was even more impressive in person. I think you’ll enjoy hearing her point of view; a must listen for anyone with MGUS, smoldering or on the fence.
And remember, if you can’t listen tonight, I’ll run a link so you can play the replay at your convenience later on.
“See” you tonight. Feel good and keep smiling! Pat