July 30, 2021
July 20th was my first day of my new treatment, Amondys 45, aka I'm on dis 45. We had to get up early to drive two hours away to Strong memorial Hospital, In Rochester, which is the only place where I can get the treatment because of my stupid insurance. It's not a bad trip as I enjoy a good car ride, but it is kind of annoying to have to do four hours of driving every week for the rest of my life. Not to mention, that I have to get stabbed with an IV every trip, which is not the most comfortable thing.
Notable trip sitings were a closed restaurant called restaurant, a plant shop R didn't get to stop at, and a very hungry R who skipped breakfast.
The hospital part of the day was a blast! I had a nurse with a lot of attitude and a tiny painful tube in my hand, the most fun I've had in a while. We watched a movie called "Shiva Baby," that reminded R of her family and her Shiva baby roots. We had Chipotle, which finally filled R's stomach, but made it feel like a rock. All the while we were still waiting for the actual drugs to be prepared by the pharmacy and brought in by the bitchy nurse, but finally an hour later the treatment arrived and after being infused for another hour I was done. Thank god!
The most eventful part of the drive back home was stopping at a rest stop that claimed to have Starbucks, but the Starbucks had been eaten by a black hole called the US economy.
Going forward, I'm going to have to possibly get a port, which would allow easier IV access. I'll also have to make sure R eats before we leave. We're actually writing this blog post on the way to my second treatment so wish me luck. If you want to learn more about the treatment you can read about it here: https://www.accessdata.fda.gov/drugsatfda_docs/label/2021/213026lbl.pdf
I hope that the positive effects of this treatment outweigh the pain in the butt it is to get it at the moment.