Weekly Wednesday Update - 8/30/23

Hello again from a stretcher in the infusion clinic. It has been a couple weeks since my last update so let’s get up to speed here.

Since the last infusion with the new drug, Panitumumab, I have had to deal with some new unfortunate side effects, namely a rash. It is really strange. It starts on your face and works its way down to your torso, but never really goes anyplace else. It is like a dry acne type situation that from what I have been told you can’t treat like normal acne. So now I have more zits than I ever did in high school, and there’s not a whole lot I can do about it. They have me on an antibiotic and have given me some steroid cream to combat it as much as I can but we’ll just have to see how bad it gets. At this point it is just uncomfortable, itchy, and just generally not fun to look at (which is great on the most visible part of your entire body…) 

In all though the last round of chemo was relatively tolerable. I still hibernated for about 2 days after the initial infusion but I noticed some of the side effects of the old drugs weren’t there (cold sensitivity being the most notably absent). 

I had another MRI this past week as part of the protocol for my liver transplant, to make sure I’m still a candidate. And while I was pretty confident going into the scan I was very anxious about getting the results. In all the results were stable. No growth outside the liver and in the liver everything looked stable. I was hoping that things might have shrunk some more and that we might have more surgical options available to us, but I’ll take stable. Stable is good. No change, at this juncture, is an ok thing, but it took me a while to come to terms with that. 

So now we continue to wait for that perfect donor to be identified. From what I have been told there are a handful of people who are nearing the end of that evaluation process, a number of others who are midstream, and even more who have at least filled out the initial forms. It has been incredibly encouraging to see, especially since I have no idea who is going through the process (unless the donor has told me directly), so the day they determine a match will be an exciting surprise! 

In the meantime the potential for a deceased donor liver to emerge is still a non-zero probability. This morning I was informed that there were conversations about a potential deceased donor organ for me as recently as this week. So that’s at least two close calls that I’m aware of. I have decided that while the living donor route is my preference, if a suitable deceased organ became available first, I would take it, despite its probable flaws to have reached me at the bottom of the transplant list. (Because I’m not in liver failure, and my liver works really well, I am at the very bottom of the list. If a donor organ were to be offered to me it would have been turned down by a number of others and would likely have some flaw like Hepatitis C or something like that that could be cured).

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For now we are just enjoying these last weeks of summer. The Dexter Cider Mill opened last Friday so the unofficial start of fall is upon us, and the girls and I did not neglect the opportunity to be one of their first patrons and enjoy some top-notch cider and donuts. So with the cider mill returning from hiatus and the return of college football (Go Blue!), the trees will be turning colors before you know it! 

Moira is back in daycare this week, and Caroline will start 1st grade next Tuesday. We were able to do a walkthrough of Caroline’s new classroom the other day and it’s just so unbelievable that she’s already a 1st grader! Seems like just yesterday that I was bouncing her in my arms, pacing the floors in our condo south of Ann Arbor, trying to shush her to sleep. But, this kid is so ready for school, I just hope they’re ready for her!