Weekly Update #77

Hello, friends.

Right after I wrote last week, the esophagitis that I had been warned about being a side effect of radiation kicked in. My esophagus itself is irritated and I’m having reflux as well. It has been very hard to eat and drink and I am just now feeling like it may pass soon. Without adequate food and drink I have been exhausted, entirely skipping all activities beyond naps, TV, and reading.

Due to this, I haven’t started my new chemo yet. I have to take it with food, and besides we just wanted me to be in better shape physically before we started knocking me down again. It motivated me to do all the things I can to make the esophagitis pass faster; it’s been 2 months since I had chemo and I am ready to get back on it.

I’m a week out from radiation and am still not at the level of pain relief that I was hoping for. To be fair, I haven’t experimented with lowering my doses because I wanted them to ease the discomfort in my throat. Once that is resolved I will begin to experiment again and hopefully be able to lower my doses of pain meds further. I met with my palliative care nurse today and we had a good talk about other pain management options in the future. It’s a relief to know that she has so many ideas and that I’m not at the end of them.

I’ve been feeling a lot more pessimistic lately about my longevity. Finally this week I realized it was because I’ve felt sick again this summer, and it’s been a while since I felt like a sick person. Hurting all the time, being weak from lack of calories, those things make me feel like I’m just a few steps from hospice care, that the days of feeling okay are behind me and now I’m on a decline that is speeding up. I am hoping my mindset improves a bit now that my pain is under control and once my esophagus is back to normal. I don’t think the fear that I won’t outlive this pandemic will go away, I think that is a big, fair thing to worry about right now. But feeling like a member of the living would go a long way in improving my mood.

My joy this week is the book I finished, Recursion by Blake Crouch. I really enjoyed it and tore through it in two days. It was fun to dive into an imaginary world and lose myself for a little while.

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