[cancer|personal] My first day at NIH

Well, this has been a doozie. The flight yesterday was reasonable, and I set alarms to remind me to get up and walk every 30 minutes. This kept me from stiffening up. On arrival, after some delays on the tarmac, I was re-united with Lisa Costello. We went to dinner, then she brought me to the NIH hospital in Bethesda, MD.

I was late checking in, due to the travel schedule, and it took a while to get settled. Then around 10 pm they wanted a chest x-ray. Then an EKG. Then a urine sample. Then a blood sample or twelve. There was a small comedy of errors around trying to set a needle in my chest port. All in all, I did not go lights out until 12:30 am, which even by West Coast time is quite late for me. I slept very poorly, awakening around 5:20 to eat half a granola bar, as I’m NPO from 6 am on due to a forthcoming CT scan.

There’s been the usual cycle of doctors, nurses, dietitians and whatnot flowing through here this morning. The critical conversation was with Dr. Klemen. My white blood cell count is quite elevated, 15 on a scale where 10-11 is the top of the norms. My neutrophils are up as well. This is evidence of infection, which he believes is linked to my cough. Unfortunately, if we can’t get my white count down in the next day or so, I am at strong risk of washing out of the trial completely.

They simply cannot go in and flatline my immune system while I have an active infection. That could kill me. And the TIL cell growth is timed. I have to start that infusion within a pretty narrow window.

We’re hoping the white cell count is already dropping. They’ll be reviewing this morning’s CT for evidence of lung inflammation hopefully on the retreat. But as Dr. Klemen says, whatever I’m fighting, unless it’s already on its way out right now, we can’t suppress it fast enough to meet the deadlines.

So, yeah. Here we are, in March, on the journey that started last fall, and we may be looking at a wash out.

I cannot even begin to describe the bitterness I would feel at that disappointment.

We shall see what happens today and tomorrow.

7 thoughts on “[cancer|personal] My first day at NIH

  1. Catherine N. says:

    Oof. No words. Fingers crossed.

  2. Stacia says:

    Are antibiotics an option?

  3. Stevie says:

    I really, really hope the bugs are on their way out…

  4. catfriend says:

    No, no, no. You cannot wash out. You cannot have gone through this buildup for naught. This would be too horrible.

  5. Harald Striepe says:

    I cannot imagine, how that must feel.
    So near, so far…
    All the best.

  6. Julie Nordeen says:

    Wow, this really scares me…and I’m removed a bunch of circles from the hellish reality of it. I’m sending all the positive energy I can. I hope you and Lisa can find some gentle distractions that give you a break from the stress a little bit…it must be awful. Hugs. J

  7. Emily Mah says:

    Just know that if any of us could take that infection from you and suffer it ourselves fifty times over, we’d do it without hesitation.

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