In addition to the myeloma support groups I speak to across the country, I attend two local groups here in Florida.
The Nature Coast Multiple Myeloma Support Group, and a smaller, Leukemia & Lymphoma Society (LLS) group.
Following my Velcade infusion Wednesday, I should have stayed home. But I felt it is important for me to participate–and like I said yesterday–I’m stubborn. So I dragged myself to the LLS monthly meeting.
Tampa area LLS coordinator, Lourdes Arvello does a great job setting their group up. She handles five counties with no help. She’s a one woman shop.
Wednesday the topic at hand was how to improve the group. We may switch locations, for example. They are also planning to offer food, donated by local businesses.
But the way I look at it, the LLS group is more for emotional support and the IMF myeloma group is more of an informational type group.
This is most likely because of the wider variety of cancers represented in the LLS group. Last night there were two lymphoma survivors there (along with their wives) and three myeloma patients there, too. I’m not sure why there weren’t any folks with leukemia…
The meeting lasted over two hours. By the time 8 PM rolled-around, I felt really, really bad–not realizing I had a fever of over 102–not a good thing for a recent stem cell transplant recipient.
I was tired and hot. Everyone else in the group is what Lourdes referred to as “post acute,” meaning their conditions were relatively stable.
But in a fever-induced stupor, I shared how I felt now that I had fewer anti-myeloma options.
I broke-down. It was nice having a group I felt close enough to that I could open-up.
Lourdes kindly remained after the meeting to help “talk me down.” She made the point that all I ever seem to do is try and help other people. That like a caregiver, I need to step-away once and a while to help get my head straight.
Many of my readers have implied the same thing. Maybe it’s time I listened.
I’m still running a fever. May be time to get some physical help, too.
Feel good and keep smiling! Pat