1-13-11 Thursday Day +78

Status: The doses of prednisone have tapered off, which means an end to the buoying effects of steroids, and a sense of less well-being.  They’ve stopped the anti-viral drug Valcyte, which is probably responsible for my lowered counts. Neutrophils are good, but platelets significantly down.  Hope they rebound on their own without a need for a transfusion.  Haven’t had any kind of transfusion or fever since hospital discharge – a major success.

 Events:  Ongoing problem of pain on urination – at times quite debilitating. Going back to Hopkins tomorrow for a urology consult.  Bet they’re going to find one more place to stick a tube.  Still playing whack-a-mole.

Comments:  A long and winding road.  Difficult to be as patient as I need to be.  They said the first 100 days would be tough, happy we’ve gotten through 3/4 of them.

  Love,

-Bruce

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6 Responses to “”

  1. Wendi Says:

    Hang in there Bruce! You’ve come so far. Here’s hoping for the rebound and less sticks!

  2. wendy Says:

    It’s mile 20 on a marathon and you have to dig down deep to just keep plugging away. The legs are numb, heavy but keep going. The energy is low, but the end is almost in sight. Remember those days? ANd you tell yourself, just keep pushing, you can do this. Well, you did the marathon and you’ll do this as well and have one more “major accomplishment in life.” I see the finish line…. and it’s all goooooood!!!

  3. Henry Miller Says:

    Remember that although you may have lost the prednisone-induced euphoria, you’ve also lost the likelihood that you’ll experience the negative side effects from the drug. In sum, it’s a good thing, and overall you’re doing splendidly.

  4. Donna Hill Howes Says:

    Climb every mountain…..you’ll soon taste your long-deserved victory dear friend….and lean on us….we are with you in strong spirit, prayer and mind. Love to you. XO

  5. Bill Schaffner Says:

    Bruce:
    I’ve just read your last blog and I understand:

    • A sense of less well-being — but you’re still with us!
    • Platelets significantly down – but you’re still with us!
    • Maybe need a transfusion – but you’re still with us!
    • Ongoing pain on urination – but you’re still with us!
    • A long and winding road – but you’re still with us!
    • Difficult to be patient – but you’re still with us!
    • First 100 days tough – but you’re still with us!

    And we’re still with you.

    Bill

  6. Peggie Neill Says:

    Bruce –
    I can sense the weariness in your last post. How tired you are of this and that new problem/mole that needs whacking. So very much wanting this to be behind you. I echo everyone’s points – you have climbed mountains beyond mountains, you have every right to feel extreme fatigue at “mile 20”. But you ARE gonna make it, and that noise is all of us shouting “Go, Bruce, go – almost there, keep going, we’re here, loving you and lifting you on”.
    Biggest, gentlest hug ever,
    Peggie

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