Day +22, Wednesday

Photo of the Day: My view for all of today – in bed, looking at the bathroom door, trying to figure out if I need to go or not go. Both are important; I found that when in doubt, it’s best to go.

Fall down 7 times, stand up 8.

Japanese proverb

It never ceases to amaze me how quickly things can change. The weather, someone’s temper when they are hangry, or the body after a stem cell transplant. Earlier in the week, we were looking at discharge. Yesterday evening, though, I threw up and then started having worsening diarrhea.

I spent half the night in the bathroom. And let’s be honest: it’s never a good thing to spend half the night in the bathroom.

My Team had already been alerted by my night nurse and ordered a sample to rule out various diseases, or a bacterial overgrowth, or reaction to magnesium – those all came out negative. So now, the theory is that I’ve developed Graft vs Host Disease, where my new stem cells area attacking my GI system, because they see my GI system as a foreign invader.

How do we tell if it’s GvH? Well, I’ve been scheduled for an endoscopy and colonoscopy first thing Friday morning, where they will take biopsies and samples. If this is what it is, then we manage with steroids and do the best we can.

Needless to say, Mom isn’t flying out on Thursday and Andy won’t be joining us for the weekend. I’m incredibly disappointed and sad. Scare a little, too. I just want my body to be OK, but at Day +22, there are other things at work beyond my control. But the scared and hurt and fear is always present.

I’m not sure when I’ll be getting out, but I know it won’t be Friday and not on the weekend. I’m hoping for next week In the mean time, I’ll rest up and let my body figure out what to do. Because that’s all I can do.

  1. Oh darn it, but yes, step aside and trust your body. Rich used to talk about having a safe word, and trust is mine. I hope it serves you well…hugs and then more hugs.

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  2. Keep your chin up girl. It’s all a process albeit a pain in the ass one sometimes. You will get through this! I sent you a little something so hope it can help cheer you up! I’m praying everyday for you! ❤

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    1. My disappointment because I’m not flying to Bethesda today is nothing when I think of you and what’s happening to your body. Hopefully this will be remedied when I see you next week! Please remember Julia’s special word – Trust. You hiked 500 miles on the Colorado Trail, You did the Iron Man in Hawaii when you were sick, You left an abusive marriage, You survived the ordeal in Czechoslovakia. Things will be better and I’ll see you next week.

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  3. All the hugs from us. I hope tonight is more restful than last and that tomorrow brings better things. Very sorry you won’t get to see your mom and Andy this weekend, but I’m crossing my fingers that happens sooner rather than later.

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  4. So sorry about the delay in your discharge and Bart’s return. We feel your disappointment that Mom’s arrival is delayed and that Andy won’t be with you this weekend.
    Recently I had 2 colonoscopies back to back so I can really empathize with you on that issue.
    I know you will come out just fine and that you will be discharged soon. Yourr fans are all rooting for you.
    ❤️Dad

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