[cancer] NIH Day 9

Yesterday was a weird day. Very tough in some ways, easy in others. I was quite discouraged to jump from a one-hour infusion to about six hours of infusion due to reduced electrolytes, but since I have been eating almost nothing, well, duh, I guess. It was supposed to be sort of a day off.

The food aversion problem continues to get a little better, but not soon enough. And I accidentally gave myself a setback. Also, spoke at length to the EMDR specialist here, who is going to start working with me today to see about reconditioning me back to being able to take solids and fluids by mouth easily. Right now it’s very tough, a result of last weekend’s cyclophosphamide infusion being so terribly hard on my upper GI. I’m pretty sure Dad was fascinated by the EMDR guy and the intake process, which he witnessed almost all of.

Also, a rocking rash all over my chest from the adhesives in the dressing. I tell people and tell people I react to medical adhesives. but nobody ever does anything until after the problem presents. This happens with every new clinical. Sort of like my eternal conversation about why I really, really don’t tolerate opiates well, and no, I’m not crying “wolf”.

I walked outside the ward more, which was as much about boredom as anything else. Various of us had some good chats, but I’m mostly too unfocused to read or watch Netflix or hop on the phone.

Meanwhile, this morning was the last of my kamikaze chemo sessions. One of the doctors reluctantly confirmed that the cyclophosphamide which knocked me back so hard was basically mustard gas. That gave me a whole new perspective on WWI, I can tell you. I start the TIL infusions tomorrow around noon, and the IL-2 infusions tomorrow evening.

I am still afraid.

6 thoughts on “[cancer] NIH Day 9

  1. Catie Murphy says:

    Mustard gas. Jesus.

  2. This is the first I’ve heard of EMDR. Yep, sounds fascinating, all right. I look forward to reading how it works for you.

    I hear your fear.

    As a sidenote, one of my great-uncles encountered mustard gas in what I’ve always thought as the traditional way: in the trenches during WW1. So very long ago…

  3. Stevie says:

    Jay, if you weren’t afraid you would have ceased to be you; only a fool could face what you are going through and not be afraid, and you are a very long way from being a fool.
    I hope that the EMDR will help, and that they will finally listen to you when you talk about what you know about you. But it is absolutely infuriating…

  4. Terry says:

    The arrogant obstinancy with which medical people greet patients’ knowledge about their own bodies makes me crazy with rage. Short of punching them, I don’t know now to penetrate that idiocy. I had to throw tantrums on behalf of my husband when he was in his final hospitalization over several issues, and just because the caretaker on one shift “gets it,” doesn’t mean the next shift will. It certainly exacerbates the hospital ordeal. You have all my sympathy for all of this. As Stevie said, if you weren’t afraid, I’d doubt your sanity. I’m sorry you have to go through this.

  5. Catherine N. says:

    First of all, you have a cheering section. I wish I could do more, I hear your fear.

    Can you have Lisa take a pic of the rash? That way you can brandish it at people next time…THIS is what happens with medical adhesive. Ugh. You really are in the trenches.

  6. Erica says:

    Ugh, yes, it’s really nasty stuff. Wish there was a way for them to alleviate the side effects better. For what it’s worth, I’m thinking of you and wishing you the best with all this. That you can endure such misery and terror while retaining your sense of humor, well, I admire you greatly.

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