4-19-10

  Your emails and comments have been both uplifting and enjoyable.  I feel you are all here with me.  It’s of great sustenance.

 Status: 9.0/10.   Just a little tired at the end of a long day, otherwise in good shape.

 Events: Whew!  Lots of tests – including an echo cardiogram, a bone marrow biopsy, and baseline bacterial cultures from available orifices (consumer warning: there’s gonna be a lot medical stuff mentioned on this blog).  Rounds with attending physicians, fellows, residents, interns, nurses, pharmacy folks, social workers, and some others whose names are a little hard to recall right now.   Getting vital signs every 4 hours, 2 ½ liters of IV fluid a day (with consequence necessity to dispose of it).

  Plan for tomorrow is to have a central venous catheter placed, it allows a single place to draw blood and administer medication without the need for constant sticks with needles.

 Comments: I’m being treated under a clinical trial; given one drug for 3 days, 2 days off, another drug for 3 days, and then third drug for 1 day.  The chemotherapy drugs are really not really investigational, but they’re investigating whether the first drug should be given over a 1-hour period or a 4-hour period.  The advantage of the trial from my point of view is that a large team of people have to follow a protocol rather strictly, so there may be fewer things that drop through the cracks, and a cadre of folks watching things closely.

   The clinical trial nurse went over the 15-page consent form with Lisa and me, and then I participated in a public health research study, 20-minute phone call, with another group on how patients are told about clinical trials!  Hey, they gave us a $20 gift certificate for participating.  Actually I was happy to participate in a research trial that didn’t involve a needlestick. 

  And a memory that I recalled when thinking about all of this – when I was young (in the 5th or 6th grade) my class watched a wonderful science movie called Hemo the Magnificent, part of the Bell Laboratory TV series, which focused on blood and the circulatory system.  It featured an ahead-of-its-time animation (voices by Mel Blanc) and was directed by Frank Capra (It’s A Wonderful Life).  The program had a big effect on me and my subsequent love of science (and a reminder of how small influences in a young child’s life can have major effects later on).

   The house that my parents still live in today, and the one I grew up in, was at the time near open fields and limestone-lined trenches that served as storm water runoff.  I used to go down there and pick up limestone rocks with fossils in them.  Almost all were of mollusks and other hard-shelled sea creatures, setting in stone so to speak, the geological seabed that the southeastern United States was under.  Over time, I must have stashed away several large burlap bags with several hundred pounds of limestone in my bedroom closet.  My Mom cheerfully and without impatience let me keep them there for years.  No relation to my present illness, just a reminder about the importance of a mother’s love.

  We will start treatment tomorrow or Wednesday.  I will try to get some rest the next 24 hours. 

 Love,

-Bruce 

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11 Responses to “”

  1. Laurie Samuels Says:

    Bruce

    It made me smile when I read about your patient mother. She is a great MOM!!! She called today (first caller) after we moved Helen to her condo. Hope wanted to be the first to come visit… what a dear friend. We had a smooth move but Helen was out of sorts and confused. (Understandably) I so hope that in the days and weeks ahead she will find some comfort there and settle in.

    Sounds as if your day was more than full. I hope you have a restful night. I know you must be exhausted. L. 🙂

  2. Hopie Dan Says:

    I don’t like that you have to go through what is coming up, but like that it’s there for you, so you can be well and have a long happy life.
    Your ever loving, and living Mom

  3. Bill Schaffner Says:

    You’re in our thoughts.

  4. Warren Says:

    I hope all goes well for you today. We are thinking about you every day.
    Warren and Marilyn

  5. Jolene Saizow Says:

    Bruce, Thinking of you all the time. Bob joins me in sending our love & prayers for a quick and easy recovery. Jolene

  6. Mark Pochapin Says:

    Wow – Hemo theMagnificent! It had a huge impact on me and I still think of it occasionally. We have learned so much since that movie.

  7. Penny Daniels Says:

    Dear Bruce,

    I want to echo Jim’s comments. I was shocked and saddened to hear this news, but uplifted to read your blog and grateful for the updates. I, along with all your friends at 3D and elsewhere, am praying for you. Please get well soon so you can come back and train with us. We need you.

    Lots of love & good wishes,

    Penny

  8. VINCE FULGINITI Says:

    HI BRUCE
    Although I do not share your diagnosis, I do sympathize with your hospital experience as I am just recovering from major back surgery and many of your comments ring true and bring back memories of the various hospital experiences. Your note about the deleterious effects of bed stay in hospital hits home; I spent 8 days in acute hosptial and 10 more in rehab, now 12 weeks later trying to recover muscle strength and function.
    As I said in my email, we were devastated to hear of your diagnosis and wish the very best for recovery, rapidly we hope. If we can help in any way, please let us know. Our Cancer Center here and the one in Colorado are top notch if a second opinion is ever needed. I can facilitate either facility. Will keep in touch via your blog . Get well quickly. Our thoughts are with you. Vince and Shirley

  9. Jocelyn Says:

    Bruce, just hearing the news, but have caught up via this blog. Thank you for sharing with and educating me. Always knew you were a great teacher, but I hate the “subject”.

    Family news: Libby turned 60 today. Went to Sandra Goldberg’s funeral Monday; it was an interesting blend of religions. Stanley holding up ok. You may have heard we have a new family member: Sydney Maren Rubenstein, daughter of my Cheryl. She at age 47 and Michael at age 51 picked up their baby from the surrogate “carrying” mother Nov.1. They brought her to town last weekend. Interesting procedure, when they arrived at the hospital, the baby had Rubenstein on its arm band. They kissed the carrying mother goodbye and they stayed another night at the hospital with the baby. Cool!

    I will check in on your folks. Love, Jocie

  10. Johnny & Lake Says:

    Dear Bruce, Thank you for this brilliant communication, your courage and generosity at letting us be with you on your journey (with the ‘other’ passport, as you so eloquently mentioned). We’ll be reading everyday – in fact several times a day – just to feel your presence, intelligence and share your good and less good days.
    Sent you a little missive on the email, but it seems to have bounced back; so (re-) sending to you our very strongest, best wishes. We love you, Bruce, and know you will face this — as you face everything — with courage, humor and that old southern spirit of ‘just getting on with it’. Anything you (or Lisa) can
    think of that you may need which we can get to you from this side of the pond, don’t hesitate to ask.

    big love and strength
    xxxxxx johnny and lake

  11. Julie Hill Says:

    Bruce – Your blog is truly inspiring. Only you could make this situation not only educational, but a “must read” every day. Keep taking those laps and remember your hand sanitizer! Julie

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