[cancer|personal] NIH Day Two

Yesterday consisted of a great deal of hurry-up-and-wait. Sometimes NIH remembers that it is a hospital. After the initial discussion about me perhaps washing out of the study protocol due to my elevated white blood cell counts, the doctors temporized a bit. If we could find a clear source of infection, I would wash out. My CT scan showed no evidence of pneumonia. If my WBC trended down, I might not wash out. That was re-tested again the this morning, results as yet unknown. If last night’s MRI shows any sign of infection, I might wash out. Results unknown. Sometimes large tumors release signalling hormones that cause elevated WBC, so I might not wash out.


I still don’t know. The doctors’ language got easier and more supportive every time they popped in as the day went by, but we’re a long way from closure in either event. Or not. This could change at any moment. The issue, of course, is if I do have a real infection somewhere, flat-lining my immune system with chemo starting tomorrow will kill me. This is a suboptimal outcome.

The problem is that if I miss this window for chemo and TIL cell infusion, I miss it all. The cells grow and senesce. We’ve got about two days of wriggle room on this one. Otherwise the washout is total, not “come back in two weeks and try again.”

The MRI last night was pretty tough. They wanted both a brain scan and an abdominal scan, but for some reason not a lung scan. I spent about 140 minutes in the tube. I’ve lain inside a coffin, and trust me, they’re much roomier than an MRI tube. Somewhere in the last third of the procedure I was ready to climb out screaming and run away. Next time they want a double MRI, I will insist on either separate sessions for each imaging order, or sedation. (And yes, I was already tanked up on Lorazepam for yesterday’s festivities.)

Today I am supposed to be having the dual-lumen Hickman catheter implanted in my left chest. No one can tell me when, so I am NPO from midnight until sometime after whenever Interventional Radiology bestirs itself in my direction. Could be outside my door right now, could be three o’clock this afternoon. I will be one thirsty, grouchy bear if this takes all day. The catheter itself is a bit of a commitment, so I suppose it’s possibly my immunotherapy docs will have that procedure postponed until we’ve come to a resolution on the WBC issue.

This is making me very, very crazy. I’ve invested the time since late December in this protocol. To lose it now…


5 thoughts on “[cancer|personal] NIH Day Two

  1. Laurie Mann says:

    Hope for better answers today.

  2. pelican says:

    I hope they can find a solution/explanation that keeps you in the trial- so frustrating for you to be on the fence now. Fingers crossed for you.

  3. Terry says:

    You were the first person I thought of when I woke up today, knowing this terrible waiting would be happening. Keeping you in my thoughts, dood.

  4. Linda Deneroff says:

    Hang in there, Jay.

  5. Stevie says:

    The no pneumonia CT scan on your lungs is good news; I’m very much hoping that you will shortly have your Hickman implanted and be embarking on the chemo, in the run up to the Big Science. That sounds rather weird, but I’m sure you know what I mean…

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