Friday, May 10, 2019

Developing a game plan

I don’t have much, if anything, new this week. Hopkins pissed me off because they got much hopes up calling so quickly last Friday. Now, it’s a week later and they haven’t called back to actually schedule anything. 

That said, I’ve taken a crash course in the past 5 years of lymphoma research this week. It’s actually pretty amazing how much progress has been made with hodgkins over the past few years. Which is so awesome because it means there are options now. Also frustrating because we have to chose an option, and there are so many options. Targeted therapies, checkpoint inhibitors, immunotherapy... so much. Whatever I do, it’s going to have something called brentuximab v-something. Biggest issue there is peripheral neuropathy. Which I got from bleo last time, so I’m expecting it’ll hit again. Boo. But, there isn’t too much else. And I think I keep my hair. Woo! This blog has some old pictures of my without hair. Kinda scary. The hair thing bugs me because it’s what makes me look sick. 

I went to see my primary today. I had a sore throat last night and she wanted me to come in for a strep test. She is pretty awesome. It’s not strep, I think maybe a tonsil stone. But whatever. We did have a short conversation about how I’m not sick now, but friggin chemo will make me sick. That is so frustrating. I’m. It sick! Just this deadly thing lurking in my chest. Meh, details details. 

I’m hoping to start something next week (BVB). I’ve decided and I’m ready, but I’m not sure if oncology is ready or wants to wait for Hopkins. I’m someone who needs a plan and a schedule, so this lack of plan not working for me.

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