1-20-11 Thursday Day +85

Status:  Where have I been for a week?  At home recovering.  A visit this morning to Hopkins for a check up.  Blood counts are down somewhat, especially the sensitive platelets, so they took me off Bactrim (the antibiotic prohylaxis against Pneumocystis pneumonia), which has been associated with bone marrow inhibition and switched me Dapsone.  Should do the same trick without marrow suppression.  I’ll go back Monday just for a platelet check.

 Had a talk with my oncologist since I wasn’t feeling too great.  It was reassuring that he said, “You’re still sick.  Not with leukemia, but what we did to you these last 9 months.  It’s going to take time to recover, longer than you think.  But step by step.”  He was actually happy with my progress.

Events:  Lisa went back to work yesterday and did a piece for World News.  Good to have things start back to normal.  Ethan gave a Powerpoint presentation to the middle school this morning, as all 6th graders are required to do.  His topic, “My Dad’s Bone Marrow Transplant.”  Lisa said he did a great job.  One of his teachers stood up and complimented Ethan for how he has handled all this and called him a role model.  Ethan said he was embarrassed.  I said what a wonderful thing for his teacher to say.  His reply, “Yeh, but not in front of everybody!”

Comments:  I’m coming to grips with how long this journey will last.  We’re all used to an illness or an injury where we seem to start recovering quickly, with each day getting better and better – wellness just a week or a few weeks away.  This goes so much more slowly.  One day does not seem to be an improvement over the last.  So you get the feeling you’re not improving.  Nice to hear someone say, “Hey, it’s all right, you’re not backsliding – just moving at a glacial speed.”

  We’ll touch base Monday and let you know how the old platelets are doing.




15 Responses to “”

  1. Mitzi Krockover Says:

    With regards to Ethan as a role model–first of all, way to go, Ethan! Secondly, just shows the acorn doesn’t fall far from the tree. You and Lisa have been extraordinary role models for all of us.

  2. Art Ulene Says:

    Bruce….. Maybe you can’t see the progress, but you look a hell of a lot better to me! And you are still my hero. Priscilla asked today how you were. My answer: He’s cured! Hang in there, my friend. Love, Art

  3. Judy and Lewis Lefkowitz Says:

    We are eagerly awaiting these glittering icebergs calved from that glacier! Go Bruce!

  4. Sheryl Stolberg Says:

    It has indeed been a long journey. Sometimes I look back at your earlier blog entries; you should do it too, and you will see how far you have come and how much progress you have made. Day by day, each day a step closer toward normalcy and restored health. The key thing is you are moving in the right direction. Slowly, yes, but moving.
    Each day is a blessing.
    Much love, today and every day,

  5. Andrea Tuttle Says:

    As your health warms the glacier increases the pace of melt! Wonderful to hear those reassurances

  6. wendy Says:

    I agree with Art. I was going to send you a message and hadn’t gotten to it..When my dialysis patients come in so sick… they expect that dialysis is the cure…which you would know it’s not. So when I meet them, I clarify that this is the beginning and that they have been sick for quite some time and that from here forward they will get better but it takes time. We expect they are depressed physically and psychologically and that in time we can appropriately assess them and their mood. But that takes time cause there has been a great insult to the body. I always say 3 to 6 months and you will feel like a different person. But 6 weeks to 3 months you will begin to heal and the more you do to keep on track with the guidelines, the better you will feel. It takes time. No leukemia cells is the miracle!!! But as Art said.. they have abused and insulted you entire body for quite some time. Your body has to heal now, we know the cure is the goal and you got that report,that’s the blessing.Now you have to give your poor weiry body a chance to recover. It will happen. Just treat yourself gently and know that whatever it takes, there’s a huge learning curve. And that will serve you and what you do from here forward. Patience my dear brother.

  7. Susan and Larry Says:

    Bruce, Time heals everything. Be patient and enjoy your lovely family and your time at home. Every day will bring more healing thus more happyness.Good times are surley ahead. We think about you everyday. Your cousins Susan and Larry

  8. Kathy Shands Says:

    Not only are you still sick from all they’ve done to you, but you just came off steroids, and that brings anybody down. Glacial is good. Just not fast. You’re doing great. Hang in there. Love, Kathy & Joe

  9. Bill Schaffner Says:

    Hey, Bruce
    I’m reminded of what we internists always told our patients who were about to have orthopedic surgery-however long the orthopedist tells you the recovery will be, double it. When that orthopod discharges you, satisfied with the outcome of his surgical procedure, you’ve still got to go through all that often-tough rehab until you are satisfied with the outcome that’s your goal.
    You’re in the rehab phase, good buddy.
    Speaking of rehab, are you exercising? Do you have a regular work-out program? Does wonders for your endorphins. And the reps, laps, etc are an objective way you can set goals, measure your progress and revel in your improvement.
    I’m just reflecting on the consummation of modern medicine that you now are. I’m thinking of all the trails of research, basic and translational (current buzzword) that have culminated and then been woven together to create the diagnostic and treatment symphony that became your treatment. Add all the training of all the caregivers (we’ll omit the radiology transporters) and the organization of it all..I’m in awe.
    And your doc said, “Leukemia? What leukemia? That’s so yesterday. “…I’m in awe.
    Now it’s R ‘n R-rehab and recovery.
    Why are you sitting there, reading this? Do sit-ups!

  10. joel steinberg Says:

    Or as my patients would frequently ask, “How long will the operation take?” And my reply would be,” Do you want fast, or do you want good?” You may not be getting better fast enough for your taste, but you are “doin’ good” according to everyone else’s standards. You have come such a very long way. We stand in awe. Joel and Margaret S.

  11. eileen & bill Says:

    There are no words to capture the full experience you have had the last nine months…yet, you so generously shared and inspired us all..one day at a time…no doubt it will be another nine months…a period of a new gestation to absorb and integrate…be patient, sleep, eat and know you are loved. we all send positive energy your way. Bill and I spent last 10 days in Cairo and Luxor Egypt. Time now has new meaning in viewing the pyramids and tombs of the Vally of the Kings. Bill and I are thrilled at this marvelous news and simply savor the moment. love Eileen & Bill

  12. wendy Says:

    One day you will be so busy that you’ll wish you had time to just rest and do nothing.. always wanting what we don’t have. R_E_L_A_X . Meditate..
    From this side it looks like a long way off in the future until you’ll be feeling better. A year from now, you’ll look back and be amazed at how time passed so quickly. You have the luxury of knowing people who have gone through this – and know it’s normal and predictable to take time. Knowledge is power.

  13. Laurie Samuels Says:

    Just glad to hear that the doc is pleased…. he’s seen it all. I am hoping that your continued rest will bring you more feelings of wellness and encouragement. You are doing great…It would be nice if you “felt the part”. Love and hugs to you. Laurie

  14. Andy Lemer Says:

    When considering progress, think of all the time and discomfort you do not have to invest, compared to past months! You’re in rehab now…. best wishes for accelerating progress.

  15. Carolyn Hyde Says:

    So glad to hear that everything appears to continue on a positive track. I’ve had the opportunity to see Rachel recently when I chaufferred she and Madeleine to the movies. I was very impressed with the mature manner in which she was handling the challenges of a Dad on the mend. It sounds like you and Lisa are getting to see the results of many years of consistent. focused and excellent value setting and childraising with both of your offspring! Wishing you contiued progress to your ultimate goal of a return to good health.
    Carolyn Hyde

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