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Day 100

October 14, 2012

I thought I’d be writing about Day 100 from the car while Claire was driving us back home to Soquel but instead I’m writing from my hospital bed.  Day 100 is special in the bone marrow transplant world.  The transplant world can be broken up into three stages.  The first 100 days is the acute phase, then the next stage goes to one year post transplant, and the last stage starts after one year.  So, today is when I’m suppose to transition to the second stage of the transplant timeline.  Of course these are approximate dates somewhat like due dates for child births.  The second stage has a different set of GVHD challenges and also signifies my slow return to normalcy.  I don’t have to wear a mask except in crowded public places and I’m able to eat regular food  (except sushi and sashimi) and stop the low bacteria diet.  I start regaining my strength and stamina and continue reducing my meds.  But, one thing I have to be aware of is although my white blood cells may look “normal” they don’t act normally.  It’s like chronologically being an adult without having the experience of childhood, teenager, etc… to build upon.  Come to think of it, some of that sounds pretty good but concerning my immune system, it makes me especially vulnerable to virus and fungal infections for about a year.

My current pneumonia is probably a viral infection that I caught somewhere.  In retrospect, I guess I took some liberties.  The good thing is that I’m getting better with resolution of my shortness of breath and the sharp stabbing pains.  Dr. O thinks if I continue getting better and no new surprises appear, I’ll be discharged Tuesday back to Hope Village.  I’m already scheduled for my follow-up bone marrow biopsy Monday, 10/22.  That is another mile stone in that it is the definitive test to assess how much of my bone marrow is occupied by the donor cells and how much are from my cells.  Ideally we want 100% donor cells.  If all goes well, I’ll be headed home by early November.  For a while, I’ll need to come back to the COH every 2 weeks and then once a month.

There is no doubt that this has been a rough road.  I want to give credit to some of the people who have really made a difference.  The doctors, nurses, and other medical personal at COH are exceptional.  But the people who I really want to honor and give recognition to are my caregivers.  This is an extremely difficult  role, the unsung heroes.  They are my family members who give, give, and give.  They’re there to offer support and help yet can only watch me, be there, and wait.  It’s painful and frustrating and at the same time it brings out the best of them as human beings.  I’ve been very fortunate to have the most wonderful wife who has been with me through this entire ordeal.  I know this has taken its toll and is wearing on Claire but she keeps in there.  My mother, brothers and their wives have been here as well to lighten the load and help out.

Lastly, “Lets go Giants”

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8 Comments
  1. Chip Goldeen permalink

    Dear Jim,

    Sorry for your set-back, but it sounds like you’re on the road forward again! I hope you have gotten to watch some of the baseball games too help pass the time, because they have been great. Last night Derek Jeter broke his ankle—such a bummer for him and the Yankees, he is the real deal. More importantly the Giants have been doing well and I hope they continue through the next playoffs with much success. Yesterday was a beautiful day here in Santa Cruz. I went surfing for a few hours and had a great time, today the weather is beautiful again. I go to Philadelphia Monday for a week, so I’m glad to have some good weather before I leave. Hopefully you will keep getting stronger and be back home to celebrate the Holiday Season in your own home. Thanks for the updates, it is great to follow along with your progress. We are thinking of you constantly and root every milestone you achieve. Stay strong.

    Chip

  2. Lee & Gwynn permalink

    Short term set backs have a way of paving the road for long term positives. I’m sure that’s at work for you. God Bless…Lee & Gwynn

  3. Charlie Young permalink

    Relieved the pneumonia is getting better. We can see how great Claire’s been. You too seemed happy and appreciative of each other when we were visiting.

  4. alexis permalink

    think positive: the pneumonia is only a slight pothole on recovery road

  5. 100 plus days — you’re alive, surviving pneumonia (which I can’t even spell) and already anticipating stage 3. The miracles, the strengths, the victories are countless. I’m on the Bodensee between Germany, Switzerland and Austria. Haven’t had much internet access for the last couple of weeks so have only been able to follow you quickly and send you love. Now I’m in a good internet place for a couple days so I’m checking in to send you cyber-love and hugs. Playing your flute at all?

  6. Linda Bobbitt permalink

    So glad to hear that you are getting better. I will pray for 100% donor cells. That is what it’s going to be and that’s all there is to it. We sure miss you and can’t wait until you can come home to Soquel and when you do be real careful so you don’t have to go back there. We love and miss you and will send prayers your way as we always do. Dennis and Linda

  7. Holly Bengtson permalink

    SOOOOO happy to see you today. You look great! Don’t forget— no Raves for at least 3 months! Haha

  8. Buzz Harris permalink

    Your positivity is still radiant. And I know that you know that you being able to think your words and write them is something you truly appreciate and am grateful for. Me, I cut my middle finger and am having a hell of a time using my right index finger. How about those guys who do everything thing their big toe.. SHUT the FUCK UP !!!!!!!!!

    Looks like the Giants did really well the other day,, too bad it was against the 49ers.

    shalom—

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