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10 months 4 days

May 11, 2013
my doctor, Dr. O'Donnell

my doctor, Dr. O’Donnell

Hi Everybody,

I just had the most exhilarating experience that I want to share with you.  I attended my first annual “Bone Marrow Transplant Survivor Reunion” at the City of Hope.  There must have been over 1 thousand survivors with their families and donors.  It was festive and inspirational.  The oldest survivor is now 37 years out and the COH has just broken their 11,000th transplant recepient.  I saw my doctor yesterday for a routine visit and I visited a friend, David, from Santa Cruz in the hospital who is day 37 with a cord blood transplant.  Coincidentally, he was in the same room on the 5th floor that I was in when I was readmitted for pneumonia last October.

During my stay in the hospital last July, their were 3 BMT people whom I met and bonded with.  Ray is like me in that we both had severe Myelodysplastic Syndrome, Edie and I have the same doctor and we were transplanted on the same day, and Gary.  Edie couldn’t come because she just got released from the hospital for pneumonia.  Ray was there and he told me that 2 months ago he a sudden drop in his blood count and a bone marrow biopsy showed over 10% blast (not good).  He was treated with chemotherapy as an out patient and is now doing well.  Gary has been having some GI issues.  I met several other people and we exchanged “war stories”.  Holly is another survivor and works at the COH.  We’ve become good friends. DSCN0704It’s a exclusive club, a family that has very few rules for admission.  All you need is cancer and/or a bone marrow transplant.  It’s a very safe place and nurturing.  We compared treatments, ongoing problems, medications, etc… One thing for sure, our health will never be “normal” again.

I reflected on how intense and enlightening the experience of being at the City of Hope was for me.  In one sense, it was a God sent, beautiful.  Don’t get me wrong, the diarrhea, vomiting, fatigue, etc… sucked!!! but there was a transcendence.  So how can I keep that wonderful part alive and not succumb to life’s mundanities.  I don’t know, it’s quite a challenge but one that I have to do.

When I saw my doctor, I asked about decreasing my medications.  She is very conservative and her general approach is 1 pill every 2 months.  If all goes well, I’ll be off my immune suppressants by March 2014.  I also asked her what she thought about me going back to work part time.  I’m feeling pretty good.  I have energy and I don’t have any severe GVH symptoms at this time.  I didn’t get a definitive answer.

So, I’ll go back home to Santa Cruz rejuvenated and OK with where I am, making the best of every day.

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10 Comments
  1. Bob Smith permalink

    Heidi and I think you look terrific. We miss you.

  2. Alexis permalink

    Wow! That event sounds like it was a huge blast

  3. Ron and Merrilyn Marker permalink

    You look terrific. Have I commented that you and your family are truly an inspiration. Hugs to all of you.

  4. Esther Levandoski permalink

    So glad to hear that you had a good time and that you are doing well.

  5. marc yellin permalink

    Yipee! Cool. Mazel Tov. I need my annual exam so sign me up!

  6. Chip Goldeen permalink

    Jim,

    You look good! Glad you are doing so well, keep it up. It will be great when you can get back to work—not only for you but for all of us patients too. Our S.F. Giants are doing quite well. Hope you have been able to catch a few of their games. Stay strong.

    Chip

  7. Linda Bobbitt permalink

    OMG you look fantastic!!! So glad you had a good time. That is music to my ears that soon you might be coming back to work. Dennis won’t go to any other doctor and he is way over due for his check up. Now don’t go over due so you have a set back!!! We sure do miss you and miss you.
    You are in our Prayers always. Linda and Dennis Hope to see you soon:)

  8. Patsy & Howard Benfield permalink

    Aloha Dr. E,
    I had a follow up visit with Dr. Nathan Atkinson earlier this week (following a blood test) and asked about you. He told me of your blog. I got the information from the ladies at the entrance desk at Palo Alto Medical Foundation & finally got to looking it up today. I just finished reading your entire blog. WOW……….I miss you so much. Sure wish I had known of it before & I would have been pne of those folks who have been sending you letters of encouragement. You have been in my thoughts and prayers all along………. Dr. A is very nice but he sure isn’t you……… I refer to him as Dukie Howser (of course not to his face). I really miss your office & our hugs. In my opinion Palo Alto’s system sucks. It is so clinical. Needless to say I am thrilled for you and your progress. Would love to have you back as my regular Doc, but you MUST….AND I EMPHASIZE MUST….take care of you first.
    Really loved the pictures. Your latest one is very handsome. Your new crop of hair is quite the cat’s meow and you & Claire look so happy. Congratulations on your sons wedding. It’s always a special time when adding a new addition to the family.
    Since I have now joined your blog (I might add this is the only blog I have joined) I’m looking forward to getting more updates from you and hearing how your doing. Until then love to you & Claire.
    XXXXX
    Patsy (& Howie too) Benfield

  9. Patsy & Howard Benfield permalink

    Aloha Dr E,
    I wrote a comment to you earlier but not sure that it got through, I may have hit the wrong button or it didn’t post since I hadn’t joined our blog yet so will try again.
    I had a visit with Dr. Nathan Atkninson at the Palo Alto Medical Foundation earlier this week (following a blood test) and asked about you. He told be about your blog so I got it from the ladies at the entrance desk at the Palo Alto Medical Foundation. Sure wish I knew about it before now and I would have been one of those folks who were sending you words of encouragement. You have been in my thoughts & prayers all along. At any rate I got to looking it up today and just finished reading your entire blog from the beginning. WOW………..So pleased to hear that you are doing so well. Alot of the technical stuff was way above my head but still very interesting and so thorough. Loved the pictures. Especially the most recent one of you & Claire where you both look so happy. Your new crop of hair is very handsome. Oh yes, congratulations of your sons wedding. Adding a new member to the family is always a happy occasion.
    Dr. A is ok, but he sure isn’t like you………..I miss you terribly. I refer to him as Dukie Howser
    (but not to his face). Also in my opinion Palo Alto Medical Foundation sucks. It is so clinical. I really miss your office and our hugs. Would love to have you as my Doc again but you must and
    I EMPHASIZE MUST take care of you first.
    Since I am now a member of your blog (I might add that this is the only blog I have joined) I look forward to getting your updates and hearing how you are doing. Until then take care & love to you & Claire.
    XXXXXXXX
    Patsy Benfield

  10. laura maslon permalink

    this all sounds so wonderful! i just love your pictures. i have only been to a few of the places you visited. you could be a fabulous travel writer. thanks for whetting our traveling appetites. all the best to you both and love, and healing. laura

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