Oh, yeah, that happened last weekend. I turned 40. I was feeling a little sad and apprehensive leading up to the day, but with a little reflection, I realized that GVHD notwithstanding, I have a lot of good things to be grateful for, including a family that loves me, a great relationship with a man I adore, a home that I love, and cats that bring me joy every day. And pizza and chocolate cake. All told, pretty amazing.
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| Homemade Birthday Card |
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| Blonde Highlights |
So forty came and went, and then this past week, we headed back down to the LA and I began the Rituxan. Unfortunately, because of covid19, Keith wasn't allowed back into the infusion room with me, so he literally had to sit in the car or walk around Westwood and wait until I was done. (Oh yeah, he can walk again. His cast came off about three weeks ago, but he is still wearing a brace most days, to add some stability. When he had his accident, he literally broke his leg through his snowboarding boot, so he took quite an impact, and there was probably some soft tissue and maybe tendon damage done as well, as his whole foot and ankle swelled and turned black and blue. He's getting better, but he still has some rehab to do to get all of his muscles and everything back into pre-tree shape. When the doctor removed the cast he told Keith, "You know, it's going to take some time, you're not 30 anymore." To which Keith replied "How dare you." Them is fighting words.) Anyway, the first Rituxan infusion is done slowly and the rate slowly increased, to make sure that you don't have a reaction to the medication. Guess what? I had a reaction.
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| Waiting for them to hang my bag |
They pre-medicated me with Tylenol and IV Benadryl, so I was feeling a bit sleepy, but about an hour into it, my throat started feeling scratchy, like I had a small furry tennis ball in it, and I was having a bit of a hard time swallowing. And when I would swallow, I felt like my ears were closing up. I don't know if that makes any sense. I've never had that kind of reaction to anything before. So they immediately stopped the infusion, and the nurse called an NP to come take a look at me. It happened to be my regular NP, so that was nice, I got to chat with her for a few minutes, and she already knew my history, and suggested that they give me a shot of hydrocortisone. Which I agreed to. Apparently, an infusion reaction to Rituxan is not that unusual, and the protocol is to stop the infusion, if the reaction is not severe, they treat the reaction, wait to see if the issue resolves, and if so, begin the infusion again beginning at the slowest rate, and again building every 30 minutes. My scratchy throat started to clear about ten minutes after the steroid shot, and completely resolved within about 20 minutes, and they restarted the infusion. All told, I was in the chair for over six hours. I'm hoping that the next infusion will go more quickly, but I really don't know. They might need to play it safe again because of my initial reaction.
So why would I even keep doing this if it makes my throat close up? The truth is that I don't really have many options left to treat my GVHD. I've tried most everything, except Rituxan and photopheresis. They've told me that I probably wont know until after I've had all 4 infusions if it is going to work or not, and quite frankly, the cure so far is almost worse than the affliction. I feel like I have to at least try, though. Daily pain is exhausting.
So we're back on the roads, and UCLA is much quieter, but still not really the place that I want to be in light of the current corona virus events. But I'm really trying to give this my all, I mean, what other choice do I have, really?
One down, three more to go.
