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2 years and 3 months+

October 17, 2014

After a year and a half of planning and organizing, we had our first meeting of the Santa Cruz Bone Marrow Transplant Support Group last night. To say I was excited and apprehensive is an understatement. 20 people, patients and care givers attended with several other people saying they’ll come to future meetings. We sat in a large circle and each of us introduced ourselves and told our stories. Amazing, intense, heart breaking and more. The one thing that struck me was universally we all felt the need to come together to give and receive support. It was so obvious that this was a need that everyone hungered for yet did not exist in our area. I suspect Santa Cruz is not alone and post transplant life is an issue of BMT that has yet to be adequately addressed anywhere.
Just surviving the transplant for 100 days was the initial goal but with all the advancements in the field over the last 10 years, patients are living longer and encountering all sorts of issues with survivorship. Some of these are ubiquitous to cancer and chronic illness like daily fatigue, cognitive dysfunction, pain, a myriad of medical complications, psychological and financial challenges. Others are unique to BMT like the dreaded chronic graft vs host disease.
So, where do we go from here. It’s overwhelming and thank heavens we have a core group of 5 people working to make this group fly. A process that is evolving! One thing for sure, it’s exciting and I feel privileged to be part of this endeavor.

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12 Comments
  1. Chip Goldeen permalink

    Congratulations Jim—You still think and act like the great Doctor you are. Hope all continues well for you. How about those Giants winning the pennant last night! Go Giants.

    Chip

  2. I agree with you, GO GIANTS!
    Best wishes

  3. loren permalink

    A year and a half of positive action, work. Kudos for your teamwork!

  4. alexis permalink

    congrats on all your hard work paying off uncle jimmy 🙂 🙂 🙂

  5. alexis permalink

    i’m so proud of you. I know all the work you’ve done and will be doing is so great. I love and adore you-mom

  6. Susan Garfield permalink

    So glad your support group is off the ground. Nothing like it.

  7. marc yellin permalink

    Mazel Tov on your success and best wishes for many more!

  8. Amanda Devons permalink

    That is so wonderful that you got a support group going! We truly need each other! I don’t know if anyone else in tiny Humboldt has had a stem cell transplant but you are an inspiration to find out. I will be flying to Bay Area on thurs 23 then home to humboldt on Sunday – it’s been a long hard haul but I’m still alive- And hope the days of chemo are behind me. Jerilyn says hi. We would love to get together on one of our trips to Bay Area … She has had an amazing adventure in caregiving as well Regards Amanda Sent from Amanda’s iPhone (707) 616-1116

    >

  9. Howard Eddy permalink

    Earl coutant told me he and his wife(BMT patient) were going to attend. Great idea to form this group.

    Sent from my iPad

    >

  10. Wow, Dad I’m really proud of you. You’ve really pushed through this whole process with a warrior and leaders spirit. It scares me to know potential consequences of this illness. But your courage is inspirational, moving, and motivating for me to gain the same courage with my own challenges. And let me tell you, many other patients may have some of these post BMT side affects but I have to say I have only seen you progress and change for the better. Again, observing you these past two years has taught me a lot about facing my fears, getting up after I get pushed down, and working ruthlessly for what I want. I want to thank you for teaching me, the life wisdom I’ve learned from you has been more beneficial than what I’ve learned from anyone else. I love you so much Dad, thanks for always being there for me, and know I’m always here for you.

  11. jomobri1231@comcast.net permalink

    Hi,Jim. How wonderful that you’ve taken the time to get this done for all,including yourself. We are so proud of you. We’re in Amsterdam and went to the Van Gough museum today. Tomorrow, we take the train to Berlin to see Monica and Julian. Hoping to see you in November before Thanksgiving. Love, Sun-Ah & Charlie

  12. Viki Welling permalink

    You are healing people in a new way. God is not finished with you. You always were an amazing healer

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