Monday, June 19, 2023

Day +95 - Ups and Downs

 Well, as Stacy summed up so well on our Caring Bridge site, it's been an up and down couple of weeks.

The down being that the GI issues which have been a constant side effect continued to the point where I had lost weight and was a bit dehydrated. It also threw some of my labs off. So that meant some IV fluids and a colonoscopy later in the week. The hunt was on for the cause of the persistent issues: perhaps a GI infection or perhaps GVHD (graft versus host disease) of the GI tract. We also reduced the amount of magnesium I was taking, in the event that was bothering my gut, too. 

The up being that post-colonoscopy I started feeling a bit better. And the pathology from the procedure confirmed no infection, but evidence of mild to moderate GVHD. So we've started on a mild steroid that targets the GI tract, and doesn't have the same immunosuppressive side effects that a stronger steroid (such as prednisone) has. And between these different interventions, these past 7-10 days have been about as good as I've felt in weeks, if not months. 

We return for a visit on Wednesday (day +97!) as we seem to be back to weekly visits for now, but hopefully we get good news that labs are continuing to improve, and we are clear to move off the neutropenic diet. That would mean bring on the take out food!  We'll see in a couple days.

I'd be lying, though if i didn't say the ups and downs have been a struggle. It's hard to see the light of progress through the gray down days. Hard not to obsess about every abnormal lab result. A little knowledge is a dangerous thing. But having weeks like I've had of late - which included a couple of outdoor meals in the backyard with family! -- really help shine the light bright enough to help cut through the darkness of the next valley.

I've also been struggling with cabin fever. Of course, we're practiced at the whole lock down thing, but during the pandemic, when everyone was locked down, we were all in it together. Now, I'm locked down while the rest of the world is unchained, free to dine out, go to stores, sporting events, meet in person, and generally carry on. Sometimes it's hard to watch the world go by but I know I'll get there. It's just going to take a few more months.



4 comments:

  1. Dang I’ve missed a bunch of updates. I do appreciate hearing about the progress as well as the regress. And if it’s any consolation I don’t have much of a social life either.

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  2. Day 97 was better than Day 95....YOU GOT TAKE OUT FOOD! Yay. I hope the "UP" days are plentiful. I get the Cabin Fever....that's a tough one. You'll be there soon. Stay strong my friend.

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  3. Thank you for the prompt on Facebook, which helped me realize I’d missed several posts. Appreciate the frankness, detail, and of course your stellar writing- appreciate whats going on without bugging you for updates. So glad the trend lines are going in the right direction and that each increment of time brings new returns to life’s pleasures (the takeout looks delicious!). Thinking of you lots.

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  4. Those down days sound frustrating and probably feel long. I know you're soldiering on, though. And I'm glad to see in another comment that you got some take out since posting. Here's to good food--what a difference that makes!

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