10-20-10  Wednesday

 Status:  9.5/10.  A-OK.

 Events:  Well, here we are, and all in one piece.  Perhaps that one week delay was meant to be.  I’m stronger, fatter (a relative term to be sure), and as about as fit as I’m going to be to start all this.

  One of the supervisors walked in the room and looked at Lisa and me (I was sitting in a chair reading the newspaper) and said, “Which one of you is the patient?”   We both thought she was joking, but she repeated the question.  We told her I was, and she looked at the empty bed and said, “Really, are you waiting for the patient?”  We finally convinced her I was, and she asked if we were being discharged today.  We told her, “No, we just got admitted.”  She was flabbergasted and said that I looked better than most of the staff.  What a nice optimistic note to start off with.

  I just got a whopping loading dose of Dilantin (the anti-seizure drug to ward off the known seizure side effect of Busulfan).  They’ll start the test dose this evening with 10 hourly blood drawings to get levels, so it will be a long night.  Tomorrow they’ll start the full dose Busulfan and Fludarabine for 4 days.  They’ll also start anti-viral and anti-bacterial prophylaxis.

Comments:   A “loading dose” of a drug is an amount several times that of the usual daily dose.  The reason is to get to the optimum blood level of the drug quickly.  If you took the regular daily dose it might take a number days to get it up to the prescribed level.  It’s just like getting into a cold car on a winter morning.  You turn the heater on full blast to get it up to a comfortable temperature quickly and then turn it back to keep it where you want it.

  Lisa has made the sterile hospital homey – my refrigerator, shelving and containers for food, clothes, books, etc.  And she’s decorated the walls with picture-posters the kids made, and one very special poster that she surprised me with last night.  One Saturday morning she secretly gathered together at Ethan’s school gym more than 70 family members and friends who have been so great in their support.  Good friend Scott Robinson took a picture of all the assembled with a sign that said,”TEAM BBD.”  Scott put the 11×14 picture on a poster that everyone signed.  And then our neighbor Paula Robinson (no relation to Scott!) made up another poster with a dozen folks who couldn’t sneak off that Saturday morning.  What a cheery support team!  You guys are all on the wall and with me every day (as you have been all along).  No way to say how grateful I feel. Thank you so much!

Much love to everyone who has been there for me,

-Bruce

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16 Responses to “”

  1. Esperanza Says:

    WOW! How great is that, Your woman and your support team there. LOVE,LOVE,LOVE YOU!

  2. Sharon McDonnell Says:

    Hi Bruce love the story of the nursing supervisor. Good to know you are not wearing a packard that says “I AM THE PATIENT” or “I AM SICK” Sounds like you could move among the populace and be mistaken for a “normal” person.

    I am lighting a candle for this round. We will keep it lit. Every time we see it we are going to send you mojo mondo muju amazing recovery juice. Really, we are. You might feel it as little bursts of buoyancy or irreverence and maybe some tingling. I am also sending to you via home a CD that you might think odd but I swear to you that it is worth trying. It is 30 minutes of laughing. I dare you to listen to 3 minutes of it without feeling a little silly and then oooo whoops, smiling, and .then …uh oh… a giggle. Guaranteed even if you try not to. I got it as part of a research project and then hung on to it. This is your very own copy. Norman Cousins got some things right. I am also including various clips from our family that make us laugh. If they don’t work and you are left thinking “those people in Vermont have really gone to seed”, its ok. Again, the risk to you is low. I am hand picking them for you and Lisa and if any of them hit the spot let me know. There are more. What a wonderful gift to have all those smiling friendly faces to look at. Research says natural light, images of “biophilia” (really I didn’t make that up, or nature itself are all associated with better outcomes in hospital settings. And, positive social connection either real or virtual has got to matter . If “they” haven’t proven that one yet lets do the study. It may be multivariate but jeesh like shooting fish in a barrel. I will label the envelope with a note re contents so Lisa can suss it out from the trash re elections. The Dartmouth students will miss you this year but it will build the anticipation for your return.
    Cheers

    Sharon

  3. joel steinberg Says:

    And if we lived in your neighborhood, we would be on your poster too. All we can do is root from the sidelines, and that is frustrating. Joel and Margaret

  4. Judy and Ken Freedman Says:

    Hi Bruce,
    Even though we are not in the “Team BBD” poster, please visualize that we are there sending our very best wishes and support. Not looking like or feeling like a patient is a GREAT way to begin this part of the journey.

    Love,
    Judy and Ken

  5. Sheryl Stolberg Says:

    I love that story of the nursing supervisor.
    And I love being “on the wall” — much better, of course, than being “off the wall.”
    We are rooting for you. We had fun taking that picture for you and I’m so glad you are enjoying it.
    Stay fat, fight hard!
    Love,
    Sheryl

  6. The O'Connells Says:

    The O’Connell clan is rooting for you! (and the Giants!). Stay strong and we will be holding on to those good thoughts

  7. wendy Says:

    B- I remember a similar story of having the patient not in the bed when the nurse came in to take her to surgery. She was your grandmother Nana. So good to hear you have started this hospitalization on the right foot. Prayers and lots of support from California

  8. Barbara Lehman Says:

    Good luck. Hope it’s an easier ride from now on.love, Barbara Lehman

  9. Denise Hanten Says:

    Maybe that loading dose of dilantin will keep you sleeping through those blood draws??! Best of luck. I can think of two (rather synonymous) words to describe you: brave and courageous. Your positive attitude during the changing plans and ups and downs you have been through also remind me of one of my husbands favorite sayings, “Semper Gumbi” (Always Flexible!) Keep it up! Love you, too, Lisa!

  10. Jill O'Mahony Stewart Says:

    Put me on the wall in spirit. Love, Jill

  11. Julia Fischer Says:

    So glad to hear how strong you are! You’re amazing…your family too. Good luck with the loading dose. Thoughts and well wishes, Julia Fischer

  12. Henry Miller Says:

    More prayers, support and good thoughts from California!

  13. Judie Davidson Says:

    Forward ho! Rick and I are with you in spirit. Lisa, you are phenomenal.

  14. Penelope Douglas Says:

    Hey Bruce,

    Know that the ITV team is there too, in spirit, cheering you on!!!Glad you’re feeling well after that respite week…I definitely think you got that extra week “for a reason”. My feeling: those prayers we’re all saying for you are keeping you safe…you may not be particularly comfortable…but the loving Being we beseech on your behalf is holding you in His arms and keeping you safe… and helping your family stay strong.
    You’re a fighter Bruce…

  15. Lynn Oliver Says:

    So even though you can’t see me I’m on that poster too! A little worried about what the staff there look like but hard to beat a “start” like that. You are awesome. Sending love,
    Lynn

  16. Margot Mahoney Says:

    What a great start! May the days ahead be equally good! Lisa was amazing in getting us all together – she even fed us! (And somehow Scott made us all look decent on an ealry Saturday morning!) Glad to be on your wall. You have the support and love of so many – just wish we could each take a part of what you are going through and share that load. You are off to a strong start! Keep it up!

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