Summer, Summer, Where Did You Go?
9/7/22
It’s 1am and I’m lying in bed, tears soaking my cheeks, my dog licking them clear off of me. I’ve just tried taking my pills with a soda and the plan backfired; the bubbles felt like knives in my throat and chest, and my shoulders seized up, and I couldn’t stop coughing until I was able to lie down.
All from a damn sip of soda.
The candida is back in my esophagus. The sores have flooded my mouth all summer. I cancelled two dates because I don’t have the energy to pretend to be normal and fun. And then I cry because I’m so, so alone. And I wonder if I should’ve married my ex; at least I’d have someone to take care of me. Even if I didn’t love him anymore. And then I realize that’s crazy talk and I have a chocolate croissant.
I’m so physically destroyed. I feel mentally beaten down too. I just want this to be OVER with, but I don’t want to die.
What do I do? Seriously—someone tell me.
I’m getting a tattoo Thursday and I may also ask for the artist to tattoo KEEP GOING on my leg. So I can remind myself to keep going. Cuz right now that seems damn impossible.
This summer has been so brutal with all the mouth sores. I’ve gained 20 lbs just from April from all the extra prednisone. I’m so fucking miserable being this heavy and I’ve spent my last two paychecks on new clothes cus none of the old ones fit anymore.
I haven’t been to NIH since February. I haven’t been to Sloan Kettering since June. Last time I was there, I was told there was a big delay.
My doctor called me last week to let me know the protocol has been submitted for FDA approval. The results will be back in 30 days. He’s so anxious about postponing the transplant even more that it made ME nervous.
“I told the auditor guy, I said I’ve got a couple people waiting on this drug for transplant, and the meds they’re on are gonna stop working soon, and then they’re in big trouble, goners.”
I choked on my Snapple Apple when he said that but I kept walking and nodding and agreeing to call him if I had anymore questions. But he seems to think we will start chemo in November at the latest. So I’m thinking next March, lol.
I’m proud of myself, though, because I’ve done some good for myself this summer, instead of being harmful towards my body. I’ve become a l Psycho obsessed walker and reader; I have read 23 books since April and I’ve walked 459 miles since June 1. I’m a beast on dese streets, I like to say. Or maybe Pete’s the beast. I’ve also raised money for suicide prevention among veterans after a friend’s brother lost his life this way; I pledged to walk 40 miles this month in his memory and I raised hundreds of dollars doing so. (Link in IG bio if you’d like to donate.)
Walking, Pete, the kids, my friends, my cousins and siblings and parents have all kept me alive in various ways. Mostly by hanging out with me at the beach, dunking under waves and feeling renewed. And taking me on boat rides to watch the sunset in the Adirondacks, and going to ice cream parlors, and food trucks and dog parks and selfies. It’s all meant so much to me to be alive; knowing I could die during transplant, and this would be my last summer.
So that’s the update; I promise to send something better written some day soon. But for now you get my rambling before bed.
Better things soon, promise.