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Day 49

August 25, 2012

I’ve been experiencing a progressive obsession recently.  I live from one clinic visit to the next which are  every Monday and Thursday.  Why, because I’m nervous about my low white blood cell counts.  This has been noticeably going on for about 1-2 weeks but when I look back, I’ve never felt comfortable with my blood counts.  The WBC and Platelets have always been low compared to my peers but I thought I was just slow (from a hematological point of view).  Recently, I’ve been plagued with the thought of graft failure and what that can mean.  My clinic routine is to first get a blood draw and then I see my transplant doctor about an hour later.  We discuss my condition and blood test but she doesn’t like to speculate about the future, one day at a time.  last visit, she drew a special blood test concerning donor and host chimerism.  Essentially, this quantitates what percent of my blood and T cells are from the donor and what percent is from me.  We ideally want this to be 100% donor.  I also received a shot of Neupogen 300mg to stimulate the white cells.  The idea is to stimulate the graft cells more than my cells and have the graft cells eliminate what is left of my white cells.

As I mentioned in my last blog, I’ve been trying all sorts of techniques to stay positive.  Every time a negative thought arises, I consciously try to squash it.  But that is like a band-aid, it takes it from my consciousness and suppresses it, but the conflict in me still exist.  Being a doctor, I couldn’t resist the temptation to know more about my situation.  It dawned on me what better source than the City of Hope Medical Library.  It specializes in cancers and transplants so the library should contain journals and articles concerning cutting edge research.  I spent an afternoon in the library and indeed, I wasn’t disappointed.

What surprised me about my journey through the transplant rejection literature is how little research and lack of consensus  there is regarding Myelodysplatic Syndrome (MDS) and post transplant course, rejection, and treatment.  In general, low and intermediate risk MDS is a fairly benign entity.  Therefore, most of the hematological research involves people with leukemias, lymphomas, and Multiple Myeloma.  What I also found interesting, is that in a sense MDS is much more complicated because of the genetic diversity.  Anyway, in conclusion, there is no universally accepted approach to my situation and each approach is racked with potential complication.  I saw my doctor yesterday and she recommended another bone marrow transplant but with an unrelated  HLA match IF I do have a graft rejection.  I think we’ll know in the next 2 to 3 weeks.

I’m still hopeful.  In fact, last night in the middle of a shower, I was overwhelmed with a spontaneous feeling that everything is going to work out.  But, if my destiny is to have another transplant, so be it.  I feel confident that in the long run I’ll be fine.

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9 Comments
  1. Randy Danto permalink

    Jimmy, I think it’s great that you put your education and experience to good use to do your own medical research. That must have felt good for you to become immersed in material you have lived most of your life. I’m happy to hear that there are options out there for you in the event you are faced with the donor rejection. It’s good to know but I’m confident that you won’t be dwelling on the negative. You are an inspiration to everyone! Keep up the good work! And love to my dearest friend Claire.

  2. Ann S. permalink

    It will be interesting to see what Monday’s numbers look like . . . maybe the sense you had in last night’s shower was sort of a symbolic notice to your body that things are shifting. . . sloughing off those old cells and embracing the new ones. Whatever your path, you’re strong and will be OK.

    A.

  3. Julie Dresner permalink

    I understand that “what -if” situation facing you but on the other hand the back door approach is what-if the transplant is a success and your strong incite in the shower that you will be fine are correct. Think about what you will do then and let the other worrisome thoughts rush down the drain. You know you’ll face them if you need to. J*

  4. Chip Goldeen permalink

    Jim,

    It is good to hear you can check out the Library down there, I’m sure it will help keep you busy. The Giants won their fifth game in a row tonight—even after losing their top hitter, Melke, to that steroids 50 game suspension he recently got. The weather here has turned cooler after an exceptionally warm Summer. Sunday I am going to drive the crash boat for the Outrigger races along the Santa Cruz wharf, which is usually really fun. I would love to see the America’s Cup trials in San Francisco, the pictures in the papers and on-line have been really cool. You should check them out, those boats are blazing fast, probably even a bit faster than your sailboat! Can you get newspaper or magazine subscriptions down there? If so let us know what you would like to read—Lisa and I would love to arrange that for you. Stay strong.

    Chip

  5. Alexis permalink

    Do what. I do uncle jimmy when I’m faced with something stressful/ the unknown: take it one day/ week at a time and think positively. I am sure everything Will work out
    Stay strong
    -Alexis

  6. Brent permalink

    Jim,
    Only a few weeks ago your WBC was in the tank at 0.2 and now you are 12 times higher and headed in the right direction, maybe just slower than you would like. Keep your chin up and I suggest you take more showers!
    Brent

  7. Nina Haedrich permalink

    Jim — please DO try the 5 min. Point of Power exercise I sent you a few days ago. It focuses your energy on what you WANT to happen and not on what you fear might happen. This has worked wonders for #s of people I know including myself. A simple strong straight-forward statement of what you want upon which you focus as completely as possible for the 5 minute duration — focusing mind, body, and spirit to this intent.
    I too think all will be well! I will do the exercise on your behalf but it is much more powerful when YOU do it. Warmest Loveing Hugs and lots of love NIna

  8. Jimmie Wood permalink

    Jimmy.

    My two cents. Instead of trying to suppress the “conflict,” try to locate it in your body. Does it just live in your head only? Do you feel it in your solar plexus? Your neck? Allow it to have its say and move through it. Kinda new agey huh?

    Love to you n’ your family!

    Peace

    J.W.

  9. Ella Johnson permalink

    When Ian’s white counts were in the basement because of Leukemia, we went with the Biblical approach. In Proverbs 17:22 (Old Testament) it says, “A merry heart does good like a medicine.” Believing this passage I would read short stories from the “Grasshopper Trap” by Patrick McManus. The book is very funny. Ian’s white count responded with a big jump, but of course, there were people praying for him as well.

    I will keep you in my prayers, and if you don’t mind, ask my church family to pray for you by your first name as well.

    Rooting for you
    Ella

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