4-30-10

“I have a tale to tell” –  Madonna,  Live to Tell

Status: 9.0/10.  Feeling much better this morning after quite a night.  Since my observing skills were diminished, I’ll let Lisa do the reporting she’s so good at.

Events: “It wasn’t exactly Linda Blair in the Exorcist – since there was no projectile vomiting, in fact no vomiting at all, thank goodness.  But as I sat with Bruce last night after his last chemotherapy dose of Mitoxantrone – it certainly looked as though he were possessed.  The doctors had warned us that about 15 minutes after the last drop of the toxic substance, patients often get the shakes.

    Let me digress here for a moment – the drug Mitoxantrone is the startling color of deep, dark, blue-black ink.  Nothing you’d want to even get on your hands or clothes, but that’s what they had been pouring into Bruce’s veins … drop by drop … over two hours last evening.  If you remember your primary colors (mix blue and yellow) – you get the idea of what happens to the color of your – uh – output – after you take the drug.  Quite astonishing.

   Well, they were right on target about the shakes.  And not just any shakes.  Think of the craziest, wildest, teeth-chattering, roller coaster ride.   As Bruce explained in an earlier day’s blog, it’s called rigors.   He got it big-time.  His body was shaking uncontrollably, and his fever was going up and up.  Shake and bake.  Luckily the wonderful nurses here are prepared with Demerol at the ready.  One syringe in the IV and the shaking momentarily stopped.  But then the shaking continued.  Then a second syringe 15 minutes later.  It slowed again, for just a moment.  They don’t like to give the third and final syringe unless they have to, for fear of respiratory depression.  It was a close call – but ultimately they decided his rocking and rolling was slowing down enough that a 3rd wouldn’t be needed.   I kept putting cold compresses on his head and feeding him ice chips.  He was just totally worn out – but I have to say, even in the midst of all of it we both got a good laugh.  When Bruce asked the nurse between breaths how long it would last, she answered (you guessed it), ‘It depends.”’ 

Comments: Lisa as usual excels in her observatory skills.  No one calls hits, runs, and errors like she does.  Although, I can only vouch for her past record, I really wasn’t there for most of her reportage last night.  In addition to the inky induction, my platelet and red blood counts had dropped low enough to require transfusions of both blood elements last night.  The manner in which they deal with lowered white cell counts (in my case essentially zero) is to try to reduce the number of bacteria in my body with antibiotics.  I’m currently receiving norfloxacin (cousin of Cipro), a combination of piperacillin (high-end penicillin) and tazobactam (another high-end antibiotic that’s effective against certain resistant bugs), and vancomycin (a powerful antibiotic usually reserved as the last defense against resistant bacteria), and an anti-fungal oral medicine.  Potent potions protecting people from potential pathogens.

    I woke up feeling quite good this morning, most likely as a result of the diminution of the chemotherapeutic agents as they are being excreted.  Next phase is to watch for the often seen late side effects of the drugs – generalized rash, hair loss, and possible complications of a low white count.  I have to wear a surgical mask when I leave the room, and now that my formerly reliable white cells have disappeared on me, I have a more sophisticated mask (makes me looks like one of those duck-billed dinosaurs in a Disney animation, which to the good side might be an improvement).  

   They’ve also stressed that one of the complications is boredom.  Hey, after all this, I can do boredom.  But your comments, emails, cards, books, and good wishes certainly keep the boredom quotient down, and keep my spirits up.

  Enjoy the month of May (it’s always been my favorite). 

 Love to all,

-Bruce

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19 Responses to “”

  1. Hope Dan Says:

    I couldn’t do this very well with out your calls and blog, and you are right, Lisa does a very good job, didn’t expect any thing less. I am glad last evening is over for you, How long before we gat to see your real nice baldness? It depends? Loving you, Mom

  2. Karen Jaffe Says:

    Sounds absolutely awful….but maybe next time you’re at Disney World (or the like) you’ll kick ass on the “Wild Mouse.”

    xxooK

  3. Judie Davidson Says:

    Whenever I had an illness as a kid, if I complained to my mom of boredom, she would always say “you must be getting better”. Bruce, I can only hope that is true for you.

    Just got off the phone with Margaret; she turns 26 tomorrow (May 1) and she sends her love. She teaches in a charter school (kindergarten aide while working on her masters) in New Orleans, lives with a nice guy, Chris, and two rescued pitt bull mutts that are less than a year old. Hope your weekend goes well and that you get to spend time with Ethan and Rachel. You gotta hang on to those kiddos while they are young.

  4. joel steinberg Says:

    Sheer awful. I’m glad you’re feeling better today. You are in our thoughts. Joel and Margaret

  5. Judi Golding-Baker Says:

    Hi Bruce
    I’m so glad you got through that wild, awful ride…what a night for you and Lisa…I hope you both have a restful weekend with the kids…God knows you both deserve it!

    Kiss an hug
    Judi

  6. wendy Says:

    B- gone to hell and back… huh? perhaps that’s why drug addicts prefer not to detox…and to think you enlisted for this shake and bake.
    I still think that if you are really rating yourself a 9 out of 10 that’s pretty damn fabulous….Also,I was thinking…do you still do crossword puzzles? or any of that kind of stuff? let me know if you do… I, too, am glad that your blog is here..cause sitting in the wings wondering is pretty frustrating.. coming home to a report makes the nite a bit better. Here’s to continued success and lots of 9 out of 10’s

  7. Aileen Says:

    Well that sure tests my dearly held belief that it’s usually best to know what’s coming–Very glad that one is behind you both–

    Had a little “it depends” moment here this week…Anna followed a friend who’d done a ‘trick jump’ off a platform at school Wednesday–(apparantly, she has now followed her brother into the ‘what the hell were you thinking??’ phase)–She’s on crutches (again), but thankfully just a bad sprain–When asked how long she might need to stay off the foot, the doc answered….

    Well, Bruce, I can contribute every home decorating magazine you’d ever want to leaf through (and the wonderful thing is that after skipping through every three or four, you forget what you’ve seen so you can start all over…ok, well, maybe that’s just me…)

    Here’s to waking up feeling pretty damn good…

  8. Peggy Polaneczky, MD Says:

    Hi – I found your blog via Gary Schwitzer. I’ve read every post, and am inspired by your upbeat attitude, humor and dedication to teaching others about what you are going through.

    As a member of my own institution’s IRB, I was particularly struck by your reasons for enrolling in a clinical trial – you brought up some advantages to study participation that I had not considered before – ie, the potential for better monitored care. Thanks for that.

    I wish you and your family all the best as you complete your treatment. You are indeed blessed to have the love and support of your family and friends through what I know is a stressful time.

    Best,

    Peggy Polaneczky

  9. Johny and Lake Says:

    several hours on the shake n’ bake exorcist ride – and still a 9/10! thank goodness for love (ie those L words – like Lisa, etc). it’s like Madonna meeting Lady Macbeth: ‘out out damn spots’ or something like that.

    and now in aid of relieving boredom:
    Bruce as you are such a darn good teacher, scientist and artist (yes!) — and this also goes for Lisa and her brilliant ability to observe, translate, communicate and write — I now have asked my research students/postdocs at the Institute (for the Converging Arts & Sciences-ICAS) to link into your blog so they too can learn from the best. As we’ve recently begun to explore a partnership with MIT (their ‘Writing and Humanistic Studies Programme) as well as their List Visual Arts Center and Media Lab – you’re being jettisoned right back to your old alma mater! What goes around, comes around, in the best possible sense of the word: Teaching!
    xxx Johnny and Lake

  10. cheryl Says:

    Your blog fascinates me, as it merges human interest with science. I am a cytogenetics technologist and I work in the Bone Marrow section, analyzing cultured aspirates and diagnosing/prognosing leukemias and lymphomas. It’s difficult to remind ourselves, as techs, that there are people behind the test results we push. Desensitization is a work hazard.

    I wish you well on your journey to better health. “If you are going through Hell, keep going!” – Winston Churchlll

  11. george lundberg Says:

    This is amazing real life medical journalism. Bruce has always been a very inventive teacher. But, Bruce, this is really extreme. Keep it up.
    george

  12. Erica Frank Says:

    Bruce, just heard about your illness and this site from George. I’m SO very sorry that this is happening, but unsurprised that you’ve extracted this substantive teaching silver lining from such a horrid experience. My thoughts are with you.

  13. Warren Says:

    What a terrible ride. On to better times. We are thinkng about you every day.
    Warren and Marilyn

  14. Art Ulene Says:

    Dear Bruce,
    I, too, just learned about your illness — and your blog — from George. (Thanks, George.)
    The blog is so YOU. Thoughtful… informative….moving…. funny…. very human…. and very humane.
    While you are best known for your medical acumen and powerful communications skills, I have always admired you for your humanity and values. Let me quote something from the book, “A Piece of My Mind”, published in 1988:
    “I spent almost a decade of my life LIVING in a hospital. I slept and dreamed while encircled by the restless nights of others. I ate my meals surrounded by those getting their sustenance from plastic tubes inserted in their veins. I walked into rooms from which others would never leave. I worked and I played and I spent most of my days in a place where most people are frightened to go. How do you deal with it? Most of the time you just have to laugh.””
    The author of those words? You, my friend….. B.B.D.
    I am laughing with you. Priscilla and I send our love……Art

  15. margaretdavidson Says:

    Hey Moose–
    I wanted to let you know that I’m thinking of you often, and that I feel relieved knowing that you’re probably getting better medical care than 99.9% of the population in the country.

    Keep pluggin’ on. And if you ever have a meeting in New Orleans dinner’s on me. As long as its around the 1st or the 15th of the month 😉

  16. bob price Says:

    Dear Bruce, on Saturday I couldn’t begin without, again, saying mishaberah refuah shelema for, & to you. But I also want you to know that those of us that have been through prostectomy resent your making fun of depends—even tho we hate to admit it, there were times when they were life (or at least embarasment) savers !! So let’s come up with another name for your award………..keep up the good humor & wonderful grace …..lots of friends pulling for you & anxious to see you at home again, & soon ! love to you & Lisa, bob

  17. Donna Hill Howes Says:

    Hi Bruce and Lisa.
    You are both gems….and those of us who love you, send you more…each and every day.
    March on, brave soldiers….you do not make your journey alone.
    Love,
    Donna and Taylor

  18. Hope Dan Says:

    You need a list of your commentteers, would love to meet them all!
    Always, HMBD

  19. Molly Robbins Says:

    Bruce: I called Wendy last night to find out how you’re doing and she told me about this blog site. It’s amazing!! I can’t wait to tell my brother, Michael, who will be starting chemo soon for his colon cancer (IV). I know you will be an inspiration to him, as you are to so many others. Who knew that Bruce Dan of “red-watercolor-punch” fame would turn out to be such a gifted, talented, incredible person. I’m sorry I’ve missed all of the years in between and wish you only the best from this point forward. I’ll go back to beginning of this odyssey and then follow your progress daily, saving good thoughts for you for whatever lies ahead. Feel my hugs. . . –Molly xoxo

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