11-6-10  Saturday Day + 9

(Guest author Lisa tonight, with Bruce’s guidance.)

Status: 7.75/10. The main reason for the drop in my status numbers is the continuing pain in my mouth and the difficulty swallowing.

Events:  Continue to contend with mucositis. Even liquid medicines are now difficult to swallow.  I am taking pain medication as necessary.  There is not much more I can do.  An emergency Gatorade supply arrived this morning courtesy of Baltimore resident and former fraternity brother Andy Lemer.  And Lisa, still nursing a slight sore throat, couldn’t take it anymore and asked the nurse if she could come up to visit.  The nurse told her just to stay at least five feet away.  So she showed up in my room mid-afternoon gowned, gloved and wearing not just one – but two face masks.  It was so nice to have my lifeline here. (Bruce’s words.)

  Tonight got two units of red blood to try to keep my hematocrit levels up.  They had dropped to 23.8.  The doctors want 25 at least.  Since they pulled my Hickman catheter, the blood has to go through my IV line – it takes longer that way.

Comments:  Other than my oral issues, everything else seems to be going along fine.  I can see why the mucositis can become such a major issue for patients though – it makes it so difficult to take medicines and to get needed calories.  They may consider giving me nutrition through an IV – but I am going to keep trying to get calories in myself in liquid form.

  I am sleeping a lot because of all the medication, especially the pain medication.  I guess that’s good, but I’m worried I’m missing all the fun.

  I’m just going to have to make up for lost time as soon as I feel better!

 Best,

-Bruce

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12 Responses to “”

  1. Judy and Lewis Lefkowitz Says:

    Glad to have you back, Lisa

  2. Sheryl Stolberg Says:

    greetings from mumbai. so sorry you are feeling low. thinking of you and praying for you from many miles away. glad lisa could be there.
    much love,
    sheryl

  3. Margot Mahoney Says:

    SLEEP , REST AND SWEET DREAMS. Both of you can not only use that extra hour tonight – but some lovely dreams to go with it. Enjoy the rest. So sorry to hear about you mouth – hope it gets better fast – a sore mouth is miserable. take care – both of you!!

  4. Mitzi Krockover Says:

    Hang in there, Bruce. So glad Lisa could be with you. We are all thinking of you.
    Love, Mitzi

  5. Henry Miller Says:

    I assume you’ve thought of this, but you might try the liquids at different temperatures to see whether that makes them more palatable. For example, room temperature vs slightly chilled vs very cold.

    It’ll get better. . .

  6. Kathy Shands Says:

    So glad you got to see Lisa! Hang in there – you’ve already made it through 9 days.
    Love, Kathy

  7. Hope Says:

    Kathy reminded me of the 9 days, almost 1/3 of the first 33, keep on going and get good, my 224. There’s not enough words of encouragement I can give, when so many are doing it every day in every way. as always,
    Love

  8. Hope Says:

    Did I tell you that you are so funny, didn’t know you had it in you, did you or is that DG coming out?

  9. Bill Says:

    All our love and best wishes to you, Bruce. We’re following your reports daily and are as awed by your optimism. A special shout-out to you from Jake, who is three years cancer-free today and is ready to welcome you to that club with open arms. And again, our deepest thanks to, you, Lisa, for your help when we needed it most.

    Bill, Char and Jake Silberg

  10. Gail Lehmann Says:

    Bruce,
    I just had a nice phone conversation with Lisa and look forward to your blog tomorrow. Keep up your great optimism!
    Love,
    Gail

  11. joel steinberg Says:

    Your rating system reminds me of all the wine rating systems in vogue. No wine ever gets a 100; no wine gets less than 80. Anything you would consider buying rates 87 (anything less is crummy) to 93 (anything more is too overpriced). In essence a 7 point scale. Or the movie and restaurant rating scales with 1/2 stars introduced for fine differentiation. When I was in practice I rated my laminectomy results as “Good” (Went back to work or full retirement activities without restrictions, not taking narcotics of any sort) and “Bad” (Anything else or had recurrent symptoms, even if from a new problem). No hair-splitting. If I were in your place right now I would give myself a “Bad” rating; but maybe not “Truly awful.” Margaret and I keep up our hopes for your speedy transition to “Good.” Joel S.

  12. Laurie Samuels Says:

    Glad Lisa got to visit and I know she looked pretty even with two masks on! Here’s hoping for better days very soon (with your mouth). Please know, constant good thoughts and prayers continue to be with you. Love to all. Laurie

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