4-22-10    PM (2 of 2)

 The outpouring of good feelings is so overwhelming and helpful, we can’t begin the thank you enough.

 Status: 9.0/10 (Had a good day despite my chemo infusion this morning)

 Events:   Had the 2nd dose of chemotherapy today (I had originally written “had my 2nd dose,” but I decided this wasn’t my chemotherapy, and that I will not use that term in these descriptions again.  I am terribly (the correct use of the word) appreciative that it exists, and that I can avail myself of it, but it’s just my little way of defying gravity.

   Had some good news.  The initial analysis of the leukemic cells showed that their chromosome signature was grossly normal, 48 chromosomes, specifically the normal human 46 and an X,Y pair (women have 46 and an X,X pair).  A sign of high-risk disease is to have a major chromosome loss or a transposition (one piece of a chromosome switching places with another). If the absence of bad news is good news we’ll take it, and we’ll take anything we can get.

    My normal white cells and platelets have, as expected, dropped as a result of chemotherapy.  The number of my disease-fighting white cells will soon drop to zero and stay there for awhile, but the team will watch them closely and deal with the complications that will no doubt ensue.

 Comments: My good friend, colleague, and vaccine guru Dr. Marty Myers made a suggestion that I comment on what it’s like viewing the doctor-patient experience from the other side.  Marty heads up the National Network for Immunization Information (NNii), and you can obtain the most accurate and comprehensive vaccine information at their site www.immunizationinfo.org.  Marty has been kind enough to let me sit on the organization’s Steering Committee and learn from the real experts.

  Yesterday morning I was visited, as I am almost every morning, by the rounding team. Doctors make “rounds” whether they are actually moving from patient room to patient room, or checking the day’s lab reports, “chart rounds”, or sitting in an amphitheater of a medical university listening to an expert, “Grand Rounds.”  Hippocrates was the first recorded physician to make rounds as he would go from patient to patient making diagnoses and prescribing treatments.

   The almost universal, choreographed dance is performed as the group enters the room in an unspoken, but well-defined, pecking order from most senior to the lowest rank.  I remember well, as a 3rd-year medical student, making afternoon surgical rounds.  At the head of the line was the chief of surgery, then attending physicians, next came the Chief resident and surgical fellows, senior residents, junior residents, interns, 4th year students, 3rd years, then an assortment of dieticians, nurses, pharmacists, social workers, and on and on.  The line was so long that those of us at the back often never got even close to the patient’s room.  We’d spend an hour or so standing in a different part of the hall never seeing the patients, never hearing the supposedly erudite teaching discussions.  It was as best as I can describe it, a moving experience.

   My team yesterday came in as proscribed (at least with everyone physically in the room) but without introductions, without any offering of social graces or pleasantries.  How different it would have been if they had said, “We’re your medical team, and we’ll be taking care of you during your stay here.  Let me have everyone introduce themselves and tell you what they do because they’ll be integral to your care.”

  They did not mean to be rude. They were just getting rounds done quickly and efficiently.  They, like thousands upon thousands of other health care professionals, were busy taking care of business – and forgetting what it must be like to be the patient. In all fairness, it’s difficult to walk in another person’s shoes.  I can be an ardent feminist, but my wife would tell me I have no idea what it’s like being a woman.  I can be an enthusiastic proponent of multiculturalism and diversity, but I have no idea what it’s really like being a person of color.  But I believe we must spend more time in medical training getting those who take care of patients to understand what it’s like to be one.    

   While the doctors may stand comfortably by the bedside thinking of the next patient, or the next task, or where they’ll go for dinner, the patient lies there anxious, fearful, or perhaps in pain.  Doctors who can empathize with those feelings and concerns may help the patient get better quicker.

   I am of course hoping to get better quickly as well.

Love to all

-Bruce

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18 Responses to “”

  1. bob price Says:

    Dear Bruce,
    in an earlier blog (I’ve just completed reading them all!)you referred to your mother, which I really appreciate—I was in south Carolina with my mother when Karen called me with the news of your illness–what a kick in the solar plexis (see your medical influence ). As you well know, I too am an alumni of John Hopkins Hospital, & all of your comments about their efficincey, & great staff I know are absolutely right…..I just your results to be as good as mine, & I know it will be. You’ve got a great spirit & that helps a hugh amount. As others wrote , your blog is wonderful for us that are wanting to be there with you; thank you for it, although it would sure be better if it wasn’t in the first person. I won’t repeat Karen’s offer to Lisa of our help–in any way, but know that it’s sincere & the least I can do as you were so helpful to us when I neded it, so Lisa, no reluctance to call us, as turn about is fair play. You are in our thoughts & prayers…. Love, bob

  2. Hopie Dan Says:

    So wonderful to have skype and you are the first to have me use it, tho I have had it for months perhaps a year, will get a microphone and then don’t have the phone in my hand, Wonderful wishes for good rest and a aother good day tomorro Love, Mom and Dad and Hankus.

  3. wendy Says:

    Perhaps dear Brother- the latent social worker in you will rise to the occasion through this experience and we’ll be more alike than different in the long haul

  4. Warren Says:

    Hi Bruce,
    You are on a journey the likes of which will impact your life in ways which only you will be able to discover as you proceed down the yellow brick road, and your dear ones are on it with you. The words “enjoy life” will take on a new meaning if they haven’t already. I have been down this road with my first husband, Irving, who had Lymphoma, and I just do want to say the experience is an extraordinary one with just so many twists and turns. Bruce, the way you are telling your story is just so unique, and I want to thank you kindly for sharing it with me. Much Love, Marilyn and Warren

  5. Jill Stewart Says:

    Thank you for your heartfelt doctor-as-patient comments. As you educate us through your process, your educating colleagues can only help them perform their jobs. God bless. Jill

  6. Nancy Bandell Says:

    Dearest Bruce,

    Your lovely wife, my dearest friend, Lisa, called me today. I’ve been walking around in a daze talking to myself all day. What do I say? What can I say? I came up with nothing! So, I decided to read your blogs. Maybe that would give me inspiration. It worked! You are AMAZING! Yes, teaching is your “calling” along with storytelling. You have brilliantly used the right words to educate me about AML, to create images of your experience, and to inspire and comfort me (and your blog-friends). To top it off, your spelling, grammar and punctuation are PERFECT! On my best days with the help of spell-check, grammar-check, my sister, my niece …. I can’t seem to avoid typos and other silly mistakes. Well, enough about me. Thanks for your blog and making me feel like I’m in the room with you. Until we chat again ….. all my love (and then some). Your friend, Nancy

  7. Judy Moss Says:

    Bruce
    Thank you so much for taking the time to write such interesting blogs. What wonderful insight and perspective you have. I hope that the doctors treating you can learn from what you are telling us. We hope and pray that the treatments will be easy on you and that you will recover quickly.
    We look forward to tomorrow’s comments.
    Love, Judy

  8. Eileen Breslin Says:

    Dear Bruce,
    Ever the educator, Bill and I await your blogs and know we are with you in spirit. Do ask the medical team their names, they will not forget being asked. It is so often the common courtesies of life which humanize us all and sometimes it is the sages such as yourself who are called on to remind us the importance being recognized as the other. I recall the JAMA book you edited years ago touched on this humanity. We admire your tenacity and clarity. Lisa is an inspiration to us all. Let us know how we may help. We are glad for every bit of news. love Eileen and Bill

  9. Bill Israel Says:

    Dear Bruce:

    EIleen’s posting for both of us again – but I can’t resist getting in another word. Norman Cousins had nothing on you! I can’t imagine a better position from which to be fighting this, than being in a good setting for help, a dynamite woman and your kids behind you, legions of Protestants, Catholics and Jews getting in their personal connections to the Almighty in the act — and you narrating with a sense of humor second to none. That’s my idea of how to handle illness!

    We’re with you, friend — eager to be helpful in any way we can, to you, Lisa, and the kids. Say the word.

    Very best wishes, and big hugs from us both — and “Arfs” from Megan and McGhee, who add their pawprints to our signing off.

    Bill and Eileen

  10. Dave Kranz Says:

    Dear Bruce:

    We just learned of your situation and want you to know that all of us are pulling for you.

    It was a year ago–almost to the day–that our son recognized you on the TV at Loma Linda University Medical Center; it was one of the ways we knew he was coming back to us.

    One thing we learned from our experience is that attitude is everything, and it’s evident from your postings that you have taken this awful development with all the good humor and good grace that we would expect. We will be following your progress and sending our thoughts and prayers.

    Best wishes from Sacramento,

    Dave and Leslie Kranz

  11. Sheryl Stolberg Says:

    Hey Bruce…
    Glad to hear you are normal, in an XY sort of way. I’m glad you’re going to write about being on the other side of the doctor-patient relationship; it’s really important and I suspect you will have a lot to say. But now I am going to play editor a little bit. I would love to hear more about your interactions with doctors. Do you tell them you’re a doctor as they are all hovering over your bedside, talking about you (I imagine) as though you are not even there? Do you think your own professional experience changes the way they relate to you? Are you sneaking reads of your own chart — something most patients would never think of doing?

    Keep up the writing. You have said that the comments are an emotional support to you. But this blog is also an emotional support to all of us who care about you and are desperate for information about how you are doing.

    Much love,
    Sheryl

  12. wendy tarapani Says:

    Dear Bruce,
    We were devastated to hear this terrible news, we feel so helpless living so far away, the thing we look forward to most is having you back in the Caribbean over the Christmas holidays! So be strong, keep up the inspiring blog and know we are sending love and prayers to you, Lisa, Rachel, and Ethan for a fast and complete recovery. We look forward to reading your incredible journal and pray that only positive things come from this test! with much love and prayers, Wendy and Abe

  13. Hope Dan Says:

    I love to read the comments , tells us that everyone you know thinks almost as well of you as we do! And we reallly love you from forever back and forward.

  14. Hope Dan Says:

    We’re quietly celebrating MDD’s 89th, more, bigger (Double comperative) next year on his 90th, remember DG’s?

  15. Joe Robertson Says:

    Hi Bruce,

    Your blog is a wonderful way to help your friends cope with this situation. Maybe it does you some good, too 🙂 . My son Antoine is interested in being a doctor (he is 13 now), so I have him reading your entries – never too early to learn! You have such a gift for explaining complex medical concepts in a simple manner. Please keep it up . . . for many years!

    I want you to know that your friends here in France are really pulling for you. Catherine, Claire, Antoine and I have you in our thoughts and we’re there supporting you in spirit, if not physically (there wouldn’t be room for us anyway, with all those doctors standing around the bed when they make their rounds – but at least we would introduce ourselves).

    All our best,

    Joe

  16. Warren Says:

    Bruce: I think you have the makings of a book here. You write so well and your keen insght could be valuable to many future patients as well as those jnterested in medical practice.
    Warren

  17. Donna Hill Howes Says:

    I fully agree with Warren….you are creating the early chapters of a book which so many would find instructional and helpful….a must read for medical and nursing students….and anyone who cares for loved ones…
    Donna

  18. Pearl1957 Says:

    I am so very glad that you wrote about rounds in this post, I too wished to be treated with a little empathy, but your right, most just don’t have the time for it. So there is niche that needs to be filled. A patient advocate that can get the answers wanted and some empathy. Cancer is scary and it feels worse when one is treated briskly by staff.
    I think Warren is right you should write a book. It would be invaluable to patients and Doctors alike.
    Again All the best.

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