Weekly Update #62

Last week I was still really exhausted from my oral chemo. I am enjoying finally getting some energy back this week and knowing I have another week before it all starts up again. We went to a local Renaissance Faire this weekend and I was able to walk around outside for a 7 hour day. That’s a really long day for me and I made it without a map or mobility aid, it felt good to feel so good.

I had an interesting chat with my doctor yesterday about a paper she read recently. There is some evidence that patients like me who develop a specific mutation that makes us resistant to one of the drugs in my most recent infusion combo, that it can go away over time. She is going to do some more research, it means that that chemo may be available to me again as an option and we might do that instead of moving to a clinical trial next. This sounds kind of too good to be true, but I am definitely crossing my fingers!

I have a new symptom and it is making me want to crawl out of my skin. I have mentioned before that I have an area on one side of my butt and extending down the back of my leg that is numb. Something has changed and now that nerve is instead giving feedback all the time like my muscles are either contracting really hard or being stretched out. I haven’t found anything that helps it, just ways to distract myself from it. It’s not painful, it’s just an incredibly unpleasant sensation and it is so hard to ignore when it flares up.

I have the next doses of my new drug in hand – after I called the pharmacy to schedule delivery I realized my heart was pounding, so clearly my body has some memory of how stressful it was to get the last batch. For now I am trying to figure out the rhythm of when are rest days and when are more reliable work days.

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