Eight Days Down, Four to Go

By now it certainly feels that it will be unlikely that Jon will have any dire side effects. He has only had the mildest of issues, barely worth noting, and possibly connected to all the drugs he gets to tamp down the side effects.  Certainly the difficulty with sleeping is related to the dexamethasone, and we are familiar with that.

His visit to the IPOP was routine.  I left him waiting for attention so I could get back to the room for a Zoom meeting. He walked himself home (the protocol is that he always needs to be accompanied, but everyone can see that he doesn't really need company on the 5 minute walk). 

We had a lunch date at Bean's house, so we left the premises and went to her cute little 10 foot wide row house in Federal Hill.  Martha had picked up some delicious banh mi and we sat outside on the back deck, under the shade umbrella, and visited for a few hours. We talked about the travel plans that we can all imagine, and got ourselves excited about letting other people plan our trips, or going on a river cruise.

Back to our dark little apartment because Jon had a work call and I needed a nap.  There was a very long fire alarm which drove us all outside, where we got to meet more people who live here.  But really, there was nothing of interest to report after we got home. Oh, Jon ate real food at every opportunity today. Every time he eats real food, he gets to skip the Boost. This is excellent progress. His tongue is pretty good, and while his taste buds are still not functioning perfectly, he is eating!

Rebecca is coming back up tonight and will stay to the end. I will go home and run around in circles, trying to plug the leaks that keep springing up. Lots of people are sick on the farm so it actually feels safest having Jon tucked away in Baltimore for a bit. He gets more healthy and normal-seeming every day.

We were never going to be able to tell whether the treatment was working -- all we were trying to learn is whether he can tolerate it. He gets the full dose on Saturday.  

Comments

  1. Cookie MandellJune 15, 2024 at 10:08 AM

    I'm assuming it's oral thrush which I had when I had that weird constellation of autoimmune symptoms years ago. My rheumatologist prescribed "Miracle Mouthwash" which is actually what he wrote on the prescription. I took it to Vienna Rexall and they knew what to make. It would coat my mouth and tongue and gave me considerable relief from the stinging. Anyway, it's an old trick that they used to use a lot for thrush. Doesn't cure it but gives you a respite from the discomfort.

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