[cancer] NIH Day Three

Yesterday involved some more will-we-or-won’t-we rollercoastering over my entry into the protocol. However, my WBC levels were down from 15 to 12, where 11 is the normal max, so everyone relaxed a lot. I also learned that the new imaging shows about 20% growth in my tumors on average, but no new organ systems were involved. This means nothing has happened which would interfere with the protocol from that perspective, also a good thing.

The main event was having my chest catheter put in by Interventional Radiology. I was on hurry-up-and-wait again yesterday morning, including an NPO order from midnight forward. They finally took me down around 11:45 for my procedure. The team there was very kind and supportive, and Dr. L— apologized for the fast. He was a kind, funny man who took a lot of care in consenting me to make sure I understood exactly what they were doing.

Dr. L— and his team did the procedure with me conscious but sedated on a mixture of Fentanyl and Versed. Normally, Versed gives me retrograde amnesia, but not in this case. And in truth, I’d have rather been unconscious. Hearing the surgical chatter is an interesting if mildly unnerving experience from the patient perspective, and the while time my right shoulder, which was uninvolved in the procedure, kept stiffening up. I guess that gave me a focus.

They went in to my neck and inserted a series of spacers, then went into through my left chest and pushed the catheter up to where the spaces were and threaded it into my left jugular vein. Plenty of local anaesthetic was used, but I still had lots and lots of odd sensations. Probably not a top five weird medical experience in my book, but definitely a top ten.

Afterwards, I was left with a sore neck.

This morning I have been started on IV fluids. Apparently a national shortage of medical-grade saline is affecting even small-scale treatment decisions, so there was some discussion of precisely when to start me. Pending a confirmatory report from the TIL cell lab, I’ll start the first chemo series at five o’clock this afternoon. That is an hour of chemo, followed by twenty-three hours of continuing hydration and very close observation (ie, waking me up every two hours to pee and carefully monitoring my fluid intake and output). This will go on for forty-eight hours. Sunday evening they switch me to the other chemo agent for a five-day run.

So, yay? We are almost at the beginning of the business end of this protocol.

13 thoughts on “[cancer] NIH Day Three

  1. Stacia says:

    Good news! I’m so glad you’re about to get started on the protocol.

  2. I’m glad the treatment is moving forward. Thinking of you, my brother.

  3. Terry says:

    Good news that you’re OK to go ahead. I’ll be thinking aboutcha.

  4. Julie Nordeen says:

    Sending strength for your chemo and broken sleep. Thanks again for sharing your experience with all of us. Hugs!

  5. Stevie says:

    Jay, I’m sorry that the insertion of the Hickman was unpleasant, but really pleased that they did it, because it seems to be an indication that they’ve decided that systems are go; they would not do that amount of plumbing if they thought they were not going to need it. So, I realise that the effects of the chemo is going to be bad news for you, but I hope it will also be bad news for the tumours, setting you up for the Big Science part of the treatment. I realise that you and your loved ones have more important things to think of than updating your blog, though news of how you are doing will be welcome to many, many people, including myself…

  6. pelican says:

    Yay on no washout, yay on no new organ system involvement!

    I hope the next week is as not-terrible as possible, given what you’re facing.

  7. Harald Striepe says:

    Hopeful, hopeful!

  8. Jeff P says:

    Depite the discomfort you experienced, I’m excited for you and keeping you in my thoughts.

  9. Fran Walker says:

    I’m crossing fingers, toes, and eyes for you…..

    Thanks for blogging this — it’s fascinating to learn about!

  10. David S. says:

    Good to hear they’re proceeding, good luck with the rest of the protocol.

    I am quite surprised to learn of the saline shortage however. Hard to understand how this can happen in the greatest healthcare system in the world, one run by the wonder’s of the free market’s invisible hand. I guess Obama must’ve done something to cause this shortage of salty water.

  11. Suzan Harden says:

    Yay! I’m happy you didn’t wash out of the trial! Thinking strong thoughts for you and your chemo.

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