Saturday, June 3, 2023

Day +80: Lazy Writing and Random Thoughts

 The posts are slowing down. The days are speeding up. I have a collection of ideas in my head but no coherent theme, so this post will live up to the blog title; it'll just be me thinking out loud. In fact, we may go the old-fashioned, lazy writer route: bullets.

  • Sunday marks Day +80 since transplant and so we are less than three weeks from the potential return of pizza, bagels, and Thai take out. That wouldn't have excited me as much 2-3 weeks ago when a lot of food tasted either very salty or very cardboard-y. But now it's maybe 80-90% normal and so the idea of being able to do take out is extremely appealing, particularly because it might also mean the opportunity to go to a restaurant with outdoor seating.
     
  • Equally important is that Day 100 marks a milestone when a neutropenic (low bacteria) diet is no longer necessary. I'm not sure what other doors open at day 100. I'm not going to be heading to a Taylor Swift concert anytime soon... or ever.  Crowds and colds are still dangerous to me. To give some perspective, at nine months post transplant, I start getting many of the vaccines that I had as a child... but with my old immune system. For the next six months, even if it's safer to go out, I still have no active Covid immunity, let alone any other immunity. So it will still be a while before I'm socializing in real life, and not on my laptop. Good thing masks are somewhat normalized now. 

  • Speaking of colds, I had the thought the other day that one way to approach some of the lingering side effects is how some people approach a mild cold. There are some colds that knock you out; but for many, you just carry on about your life with a bit of it's-just-a-little-cold attitude. Maybe you drink a little more orange juice, try to get a little more sleep, but life goes on. 

  • And then I had the polar opposite thought as I glanced at my blood count chart for the hospital. There was almost a full week when my white blood cells were barely detectable; where my platelets and red blood cells were so low that I needed transfusions. It's just over two months later and I'm living a pretty normal day-by-day existence, albeit with a few more pills and a lot more isolation. Sometimes I forget how far I've come in a relatively short time.

  • It certainly helps with the isolation to have the boys home. Granted, it introduces the potential for more germs as they are out and about. But we're being careful and I've gone from seeing one person a day to three! And bonus: I like seeing these people!

  • We head in to Dana-Farber on Monday for my now bi-weekly MD appointment. Hope the labs bring nothing interesting to report, but if anything odd turns up, I know my team will deal with it.


2 comments:

  1. Congratulations on being on the other side!! I’m so thankful for your blog as I know this wasn’t easy but your words help others not be so fearful. When ever I’m feeling overwhelmed I read your blog and get inspired to push forward.
    Be very careful with visitors..
    One of the unfortunate side effects of Rituxan for me was getting a IGA deficiency. I have no immunity to upper respiratory infections . My grandson started preschool. Has taken me down twice with double ear infections and sinus infection. They are little Petrie dishes lol But all is good now!! I’m in old Quebec City Canada happy to be traveling again. My motto is when that day comes for me I’ll never look back and say “I wish” I did more. K-from CA

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  2. Here's to seeing your three favorite people, pizza, bagels, Thai take out, and nothing interesting to report! Jennifer

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