12-13-10   Monday  Day +47

Status:   Didn’t have a particularly good night’s sleep.  Lisa forgot to turn down the thermostat as she does every night.  What is it about being under warm blankets but in a cold room?  Had to get up a little earlier than usual for my IPOP visit and lumbar puncture.

Events:  The purpose of the LP is to instill chemotherapy into the spinal canal to prevent any recurrence of leukemia stemming from errant cells in the central nervous system.  The resident performing it was flawless in his technique, which made the whole experience comfortable (I’ve had some cringe-worthy LPs before.)  When Lisa and I dined at the famous French Laundry in Napa, we got the owner and chef Tom Keller to autograph his cookbook.  He signed it with the phrase, “It’s all about finesse.”  It’s true in medicine as well.  Labs looked good as usual.

  One of the first signs of graft vs. host disease (GVH), in which my new immune system sees my body as foreign and tries to reject it, is a skin rash.  The nurses had been examining me closely over the last few days wondering if a faint redness was a rash or my natural ruddy complexion.  My nurse practitioner wondered if it was getting more pronounced and called in a colleague to have a look.  Before I had time to take my shirt off she said, “It’s a rash.”

  The first step was to take me off Bactrim (which can cause rashes), and if it doesn’t go away they would think GVH disease more likely.  If it is GVH, but doesn’t cause any problems and doesn’t progress they’d leave it alone since you want the graft vs. leukemia part of it to stay (my new immune system sees any old cell as foreign whether leukemic or not.)

Comments:   One of the treatments for GVH is immune suppressants (I’m not on any now).  I was actually getting a little nervous about not having any GVH phenomena at all since totally eradicating the leukemia was what these last 8 months has been all about.  We’ll see what transpires.  On the M-W-F schedule this week.  Talk to you on Wednesday.

Love,

-Bruce

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7 Responses to “”

  1. Art Ulene Says:

    Just want you to know that I look forward to your messages. I only wish I could be there to give your hand a squeeze. Love, Art

  2. wendy Says:

    whatever you want..we want..
    I’d be signing up in advance for that specialist who did you LP. Paying him/her off or whatever was required to insure you’d get him/her anytime you needed one… need anyone to help bribe him/her ?
    I’m on board

  3. Laurie Samuels Says:

    Tell Lisa to turn down the temp…snuggle in and sleep well! Better days ahead 🙂

  4. Jackie J Says:

    Hi Bruce
    My favorite line in your most recent post was “my labs look good as usual.” What a long way you have come. Hoping it continues.
    Best
    Jackie

  5. Blaine Says:

    Glad to hear all went well yesterday. All good on my end!

  6. Bill Schaffner Says:

    Bruce:

    We continue to follow your adventures closely, celebrating each day’s triumphs with y’all. We’re not making any rash decisions about GVH and be assured, we won’t reject you.

    Cheer,

    Bill

  7. Charlie Dan Says:

    A bit of a tangent, but I saw today a report about a man cured of HIV by his leukemia treatments:

    “A group of doctors is trumpeting a shocking medical breakthrough in the medical journal Blood: They say Timothy Ray Brown, a HIV-positive man, has been cured after receiving stem-cell treatment for leukemia. Brown got a bone marrow transplant in 2007, and is now believed to be completely free of the virus.”

    http://www.huffingtonpost.com/2010/12/14/hiv-cure-berlin-patient_n_796521.html

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