Yay, I have things to write about. There’s music, there’s friends, and there’s medical news. Let’s play this backwards and start in the evening. It was the second Tuesday of the month and that means John Platt’s On Your Radar. The original lineup included two Budgiedome alumni, Martin Swinger and Quarter Horse. Then with less than a week to go, Martin proved that he’s spent too much time around me, and hurt his hand so he couldn’t play guitar. He had to cancel. On the bright side he came down anyway and was in the audience. The best part is that I finally got to meet his husband, Brian. They got married as soon as it was legal in Maine, where the live, and shortly after Martin was my NERFA roommate. That was years ago.
Who else was in the audience? per usual, I sat with Fred, we were joined by Shelley. Kay was there, she used to be a regular but her schedule has not allowed that as much as late. That’s unfortunate for me as I love spending time with her. Jeremy made a surprise appearance along with his parents, Dan and, Sorry Jeremy’s mom, I forgot your name. Jeremy was the first person I was able to recognize across the room at Rockwood with my new eye! That was exciting. Who was I talking to when I spotted him? This is embarrassing, it’s a person that I know well and spent time with. Usually if I remember where somebody is in the room that’s enough to remember who they are. So, now I have to give my second apology. As I told my therapist, I can no longer use being blind as my excuse, I have to fall back to my other standard, that I’m an idiot. She said, “the real excuse.” Yes my therapist mocks me just like everybody else. This is really gonna bother me now. Richard and Jamie were in their usual seats. Many of the regular were missing, they were either on the Cayamo Cruise or off to Montreal for Folk Alliance International.
I realized during the show that Quarter Horse fills a unique ecological niche, string band, with a cappella harmonies, combined with Jam Band. I’ve always known it’s what they do, but never thought about how nobody I know does it.
Linda Draper was backed by an old friend, Jeff Eyrich on bass. I’ve known him either 21 or 22 years, whenever he joined Dave’s True Story. He riffed on my new improved vision by introducing himself to me. He’s actually one of the few people that I had seen clearly in the past. Hesch was there and I was thinking that he was thinner than I thought. Then John mentioned that he lost weight so that wasn’t my eyes. Sorry, the new lens is still my new toy and I enjoy playing with it.
After the show Martin, Brian, their friend Dwayne, and I headed over to the Remedy Diner for an after-show dinner. For my first time there I had disco fries. That might become my new usual. It’s almost poutine. As good as the food was the company is better. I approve of Martin’s choice of spouse. It would have been tough if I hadn’t. but Brian is totally one of my people, he’s a Jewish kid, meaning my age, from Brooklyn. We bonded over Jewish desserts and Catskill resorts. Most importantly he has a totally warped sense of humor. I don’t want to give away his genius idea in public but ask me in private about his ketchup bottle invention. There was also a lot of medical and TMI conversation. I was in my element.
OK now let’s go into reverse and talk about the daytime. I had an appointment with my gastroenterologist. Her office is on the other side of the Bronx and involves a fairly long walk at the end. First time I went there I said, “what will I do in the winter when it snows?” Yesterday it snowed and I found out. I tried a new way of getting there letting the MTA app guide me rather than Google Maps. It adds a bus to the route but left me only a short walk to the office. Or at least to where Google Maps thought the office was. It was wrong. It’s on the large Montefiore Hutchison Campus, and even though I gave the address, Google Maps misplaced the building. The walk was much further than if I went my usual way. I would have been late if the campus bus didn’t see me walking down a lonely stretch of road and give me a ride. This was not even on the campus. The other thing is that if the building was where it said I couldn’t get there as there was no entrance to the campus.
After looking at my MRI the GI saw how scarred my small intestine had suffered in the past. This was not evident from the colonoscopy. Even though my Crohn’s is quiescent now when it hit, it hits very hard; so she wants to head that off before more damage is done. She wants to put me on one of the new biologic meds that were not available last time I was treated. I of course fine that exciting. I’m weird, I like science fiction stuff even when the reason I need it is bad.
She had discussed putting me on a biologic the first time I saw her. Then as I had no inflammation she though better of it, but now seeing how hard it hits me when I have an attack she thinks I should be on it. I sadly did not put all my knowledge together when thinking about this. Biologics are large molecules and like insulin, you can’t take them orally. The digestive system would break that down. I knew that but didn’t think about it. What I didn’t know is that specific drug she’s giving me, Entyvio (vendolizumab), can’t be injected either. I have to take it as an IV infusion. I have to go to a chemotherapy center and be hooked up for half an hour. It won’t have the harsh side effects of chemo. It’s a big nothing other than being a time eater. After the initial six-week start up I’ll need it once every eight weeks. The infusion center is a short walk from there so that’s convenient.
I have to convince other people, and more importantly myself, that doesn’t make me an invalid. It’s no different than going to the gym to keep in shape. I’ll be going to get the treatment to prevent me from becoming an invalid. Entyvio is super safe, that’s why she chose it, and it sounds like a character from a Mozart comic opera, buddies with Leporello.
Now I better get going. I’ve run out of clothes so need to do laundry. Unfortunately I also ran out of laundry detergent and forgot to buy more so I have to do that first. It’s so much fun being an idiot.
Don! That’s who i talked to and forgot. as soon as i posted it hit me. We even talked about him during dinner. It’s not easy not having a brain.
Wise Madness 