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May/June

June 7, 2014

I was pleased with the way my bone marrow transplant talk at the Katz Cancer Center turned out. There were some old familiar faces, people who had either had or going to have transplants, and just curious people. Everyone seemed to find it interesting and enjoyable. I tried to look at transplants as both a physician, giving a medically didactic talk, and as well as a patient having gone through and going through the process. It sparked some good discussions at the end. Our ad hoc Santa Cruz BMT support group has grown and the local branch of the Lymphoma Leukemia Society is beginning to get involved.
On May 9th I went to the annual City of Hope survivor reunion which was nice. I always enjoy seeing old friends and walking around the grounds and reminiscing. I visited a friend in the hospital who was there for a relapse of her ALL. That was tough.
I also saw my COH transplant doctor while I was there. I was expecting some not so good news because I’ve been having some health issues recently. I had previously talked to my Stanford transplant doctor over the phone who thought from my description that I was having a graft versus host flare of my skin, mouth, and liver. So, it was no surprise that when I saw my COH doctor she agreed and started me back on Tacrolimus. It is fairly common to have intermittent episodes of GVH so I wasn’t surprised but I must admit, I was a little disappointed. I sold it to myself that I’d be the one to just skate through it all. Another detour but not a terrible one.
I had a follow up visit at Stanford last Wednesday and they added steroids to my regimen to get better control of the GVH. Steroids produce immediate results but I hope to be off them within the month. Unfortunately my doctor said that going back to work as a physician seeing patients is off the table for another 6-12 months and she expressed concern about me working in the garden due to susceptibility to fungal infections. We negotiated a compromise in that I will wear gloves and use a mask.
Every morning I wake up with a sense of gratitude and give thanks to God.

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5 Comments
  1. John and Patricia Densem permalink

    Jim, Thanks for the update. We think of you quite often. Would have loved to hear your talk. Hoped someone would record it and put it up on Youtube or something like it. As you always said to us, ‘hang in there’. I sprung a-fib a year ago but in and out of sinus rhythm. Patricia continues her struggle with RA. Otherwise, just a quiet retirement in Walnut Creek, now. You take care, and keep the faith.

  2. Loren permalink

    Jim, I am learning, too, from your blog. The value of thinking through seemingly teeny decisions, the value of endless patience, the value of team-decisions, and certainly the value of a patient who understands what’s what. Then there’s your determination. I look forward to reading more about your communicating, organizing, teaching, and other expressions of your skills.

  3. Polly Monson permalink

    And all of who know you give thanks for YOU! 🙂 best wishes for your continued journey to defeat the malady.

  4. carolynlehman permalink

    Hi, Jim!

    Yes, I, too, imagine that I’ll keep sailing through. Then something comes up that sets me wondering. So far nothing like GVH. But I learned today that adhesions can get worse over time. Shoot!

    Right now, all is basically good. I’m off to the Bay Area for a quick oncology appointment and then going to Spain again, this time with Peter to hike in the Pyrenees.

    Yes, each day is sweet in its own way and all of them are good, even the hard ones.

    Congratulations on the successful talk. You do a lot more good for people by sharing your story than you’ll ever know.

    I’m looking forward to seeing you in July!

    Carolyn ~~~~ Carolyn Lehman

    STRONG AT THE HEART i*s now available in paperback!*

  5. Chip Goldeen permalink

    Jim,

    Stay strong. Glad to hear you are fighting hard and staying positive. How about our SF Giants, I hope they can keep it going.

    Chip

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