“Courage is being scared to death but saddling up anyway.” – John Wayne
We went in today for labs and a check-in with our team. Quick in and out early this morning. We did not expect the rest that came, but it was all outstanding—meeting with the Bristol Meyers liason at UAMS, who does an exceptional job. She used to manage the Allo Transplants, so she has vast experience managing paperwork, informed consent, and checking on us to see if there is anything we need.
So at O’Dark Thirty, we head in to have a “line” put in for his T Cells to be delivered on Monday, Nov 1st. Then we head up to Infusion B and begin the three-day Bridge Therapy Chemo. Cytoxan and a drug we have never had, fludarabine (Fludara). Saturday, we do labs, and Sunday, we self-admit on the hospital floor in the early afternoon. He’ll get a neurology exam for a baseline. They’ve been collecting this information for the past couple of weeks, but a neurologist will do a more comprehensive one on Sunday.
The link is an excellent interview/transcript from Patient Power and my MM Advocate friend, many of you know as the Myeloma Teacher, Cindy Chmielewski. Cindy and I work together occasionally on Myeloma projects. You have to register usually to read or watch anything at Patient Power. But it’s worth signing up for, and they don’t barrage you with emails or sell your information. Anyway, it gives you the basics of this new therapy, that’s not new, but it has, let’s say, been perfected for the Myeloma patient specifically.
The quiet excitement around UAMS/MIRT has turned into a giddy excitement for Dave and me. Peeps are excited. I have a list to shoot a text and let folks know how things are going and how Dave is doing. It warms my heart, to be honest. We don’t feel the least bit alone in this adventure.
Dave continues to ROCK his physical therapy, and while we have been officially passed back to UAMS, we have asked them to pass us back when Dave gets discharged to have a few more sessions with Tanya, who is just stellar.
We learned that Dave would not be allowed to drive his car for eight weeks from the cell delivery. Hmmm, should I be excited about that? I so enjoy driving his new car. I was teasing him today that we should do it today if he wants to take it for a spin.
There are many post-T Cell infusion side effects that I am tasked with diligently watching out for. I need to read them all and re-read them. We’ve both been given a medical emergency card to carry if Dave begins to experience any of them when we go home and have to head to the ER. I’m so hoping we don’t have any of that! The good news is, there are remedies.
Dave has been getting into the spirit of our road trip home. He’s picking out completely different cities to venture to and stop along the way. When he heard he couldn’t drive, he got a little worried. Me: “Dude, I’ve been driving across the country many times on my own since I was 16 years old! I’ve got this!”
Wish us luck, an easy time of it, nothing too hard to manage, and a stellar outcome for Dave as well as the Myeloma community. We have so needed something as BIG as this for a while now! Onward!
And I had an excellent workout this afternoon with my trainer at ESPORTA. He gets me. Just enough, not too much, but gives me a gentle push to try for anything more than the number he has requested. Getting myself there is just the hardest thing ever! But once I do, it’s terrific. Although tomorrow I may be groaning a lot! Caregiver Self-Care is the hardest thing to do and yet one of the most important. I have to push myself sometimes, but Dave has been super supportive, and that helps too.
