[cancer] NIH Day Six

It’s Monday morning here at scenic NIH. I haven’t eaten anything since Friday afternoon but two soda crackers, of which I thrwe up. My dreams have been filled with strange chowder, including the realization that I own a Black Knight pinball machine. In point of fact, I do not, though I’ve long coveted them. They’re spendy to buy and spendy to maintain and where would I put one anyway?

They started me Friday afternoon on Cyclophosphamide as my first stage chemo agent. My mind and body both went to tell. Since then the longest stretch of sleep I’ve had is about three hours, and my total across three nights is ridiculously low. Plus all the usual stuff like diarrhea and vomiting. Uncontrollable in my case, which is unusual. Plus some unusual (for me at least) stuff like all 32 of my teeth aching at once, and my face browning hot to the touch.

I’ve run a series of low grade fevers. The chest port they put it keeps clogging. One of my nurses believes the lines are twisted inside of mu chest. Some of the vomiting was so severe that afterwards my forearms ached for an hour so, something I’ve never experienced. Dad, [info]tillyjane (a/k/a my mom) and Lisa Costello have been magnificent.

I have been magnificently miserable.

Things are a bit better today. The chemo I’m on until Friday, the name of which escapes my right now, is much more narrowly targeted and shouldn’t leave me feeling so oppressed. I need to lose the Cyclophosphamide-induced gag reflex before I resume eating, but hopefully that will be today.

When I start the IL-2 on Friday or Saturday in order to supplement the TIL cell infusion, I’ve been told to expect a weight gain of 20-30 pounds in less than a handful of days. It can do weird things to your metabolism. I’m also told I’ll lose that weight before they discharge me, presumably by pissing it away, but wow… That also puts me in mind of ascites, which I expect to be a feature of my terminal decline.

Meanwhile, I suffer for science. Please excuse any weird mistakes in this blog post, my brain is not fully back on line yet.

11 thoughts on “[cancer] NIH Day Six

  1. Hope you feel better soon. More to the point, I hope it’s killing only (or at least overwhelmingly) the right things. And, most of all, I hope it helps long term.

  2. Lisa says:

    Fludarabine is the name you can’t remember. <3

  3. Jeff P says:

    Hang in there, Jay. I admire you greatly for facing this the way you have.

  4. Connie Crooker was on IL-2. From her description of the awfulness of the side effects, it’s a miracle you’re able to type.

    Hang in there. We’re all rooting for you.

    1. Jay says:

      I haven’t even gotten to the IL-2. This was a helper drug.

  5. Terry says:

    Still thinking about you, Jay. Your friends support you.

  6. Stevie says:

    You continue to educate me, in matters large and small; I had no idea what soda crackers are, and now I do. I had no idea that there was such a thing as a Black Knight pinball machine, much less that they are expensive, and now I do. They look like fun.
    And that’s before we even start on the complex stuff; I’m trying to do some background reading up on it so I am not too ignorant to make sense of your posts.
    In other words, please don’t worry about making any weird mistakes; what you are doing is remarkable in many, many ways.

  7. Scott says:

    Well, they’re certainly not shillyshallying around. They’re hauling out all the big guns for this one. Hang in there.

  8. Ben Fenwick says:

    Speechless, really. Damn.

  9. When I start the IL-2 on Friday or Saturday in order to supplement the TIL cell infusion, I’ve been told to expect a weight gain of 20-30 pounds in less than a handful of days.

    The human body is so weird. How does it even do that? Are they pumping fluids in by the gallon during the process?

    You’re under no obligation to answer, of course. Many thanks for your updates. I hope the hours and days through the entire hard process bring moments of welcome comfort and perverse amusement.

  10. Julie Nordeen says:

    Thank you for continuing to post, Jay. I’m pretty sure I’m not the only one who has a “need” to know what’s happening with you. And as strange as it is to see any mistakes in the things you share, it’s feels like an organic and honest reaction to place and time and it gives me a greater depth of understanding about where you must be. Even if most of your words are gibberishy, I’ll keep looking for them. Strength to you and the family! Hugs.

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