10-11-10 Monday

Status: 9.5/10.  Feeling tremendously well.

 Events:  Last visit at Hopkins before admission.  A CT scan, blood work, and signing of consent forms for the transplant.  When Lisa and I went to the admitting office to register, I walked up to the clerk and said, “We need to register for admission.”  The clerk stared at us with some bemusement but finally said, “You’re both being admitted?” I forget that I tend to approach all of this as a “we” because it has been such a joint effort with Lisa.

Comments:  It’s been said that anyone who signs a medical consent form isn’t in full possession of his/her faculties.  Indeed, the transplant form has so many cautions and warnings no sane person would sign it.  In addition to describing the complications of immune-suppression and graft versus host disease, which we’ve talked about, it also details the side effects of the chemotherapy.  Besides the expected nausea, vomiting, diarrhea, and hair loss, this particular regimen has some unique attributes.

 Busulfan can cause a condition called veno-occlusive disease (VOD) of the liver, in which veins in the liver become blocked.  In some patients, this can lead to liver failure.  VOD is related to the dose administered, so before the full chemotherapeutic dose is infused, a test dose is given and hourly blood samples are taken to determine the drug level for each individual.

Cytoxan, which is given a few days after transplant to reduce the chances of severe graft vs. host disease, can cause seizures.  So I’ll be on the anti-seizure medicine Dilantin for a while. 

  It seems counterintuitive to give a chemotherapeutic drug right after the transplant, just when these new and fragile bone marrow cells are trying to develop.  But Cytoxan’s toxicity isn’t against the stem cells that develop into red cells, white cell and platelets, it injures the cells of the immune system responsible for rejection, called T-lymphocytes.  And the point is to lessen the new marrow’s rejection of me.  The first signs of graft vs. host disease appear in the first 100 days after transplant.  Initially, your skin looks like it’s been sunburned.  So a little color this autumn would let us know that the new marrow is killing leukemic cells, a consummation devoutly to be wished.   

 Tomorrow, we’ll get everything together for a long stay.

Love,

-Bruce

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14 Responses to “”

  1. Bill Israel and Eileen Breslin Says:

    Great to hear you sounding so well, and getting ready for the next stage, Bruce. It’s easier for us to hear you headed in, when you’re sounding as well prepped for it as one can be. We’re cheering you on! -Bill and Eileen

  2. Andrea Tuttle Says:

    While preparing for Thursday, I hope you are finding the time to enjoy each present moment. My thoughts are with you as you launch into this next phase. You are prepared with the all the knowledge you need, the rest, as they say, you can let go of and let God take care of. Rest and take care of each other.

  3. joel steinberg Says:

    Margaret and I are pulling for you. We have a good feeling about this. Yes, it is scary. But with all your doctors, nurses and friends on your side you have the best chance possible for a successful transplant and a cure. You are a true inspiration for us. I don’t know if I would have had the fortitude to endure what you have to just get to this moment. Godspeed, Bruce. Joel

  4. Judy and Larry Says:

    Bruce
    We are hoping and praying that the transplant goes as planned and that you have none of side effects or very mild side effects from all of the medicines that you will be taking. We hope and pray that your recovery goes smoothly and that you will be cured. We will continue to keep you, Lisa and your family in our thoughts and prayers.
    Good luck!!!
    Love, Judy and Larry

  5. Judy and Lewis Lefkowitz Says:

    Thank you and Lisa for taking us along on your journey. We’ll be with you every day on the next round.

  6. wendy Says:

    And while it’s difficult to head into this battle, at least you get to read and sign consent forms. I wonder if any of the armed services get to review or sign consent forms before they go off to their battles to keep us all safe and sound.

    That being said, I would take all this pain and suffering away if I could. And since I can’t, I’ll send all the love and support that I have and all the prayers that I can recruit from everyone and everywhere.

    Forge ahead fair brother, fore you have a job to do now and when you get well. There is a book to write or a cause to fight in all of this life’s lesson. Love, wendy

  7. Beth Says:

    Bruce

    Sending prayers for a successful transplant and full recovery to you! Also sending prayers to Lisa during this next part of your journey to recovery….its not easy being a caregiver, and yet (I know firsthand), we would not have it any other way! We do whatever is needed to care for those we love.

    Love
    Cousin Beth
    Atlanta

  8. Judie Davidson Says:

    Bruce, Rick and I are thinking of you and Lisa. I read and reread the information you send this way. Best of luck.
    Judie

  9. Ken and Ruth Says:

    And so begins the pivotal, albeit long, leg of your journey to wellness. We know in our hearts that your arrival at the finish line will be victorious and that your huge cheerleading squad of loving and supportive family and friends will be there to celebrate your return. You’re in our thoughts and the subject of our prayers during each step you take.

    Love,
    Ken and Ruth

  10. jackie Says:

    Dear Bruce–
    Michael and I are rooting for you!
    Very best wishes,
    Jackie

  11. Sheryl Stolberg Says:

    thinking of you, cheering for you, praying for you.

  12. Roxanne K. Young Says:

    Bruce

    Thinking of you in the trenches from here in the trenches. My thoughts are with you.

    Onward!

    Roxanne

  13. mike magee Says:

    Bruce-

    Long journey to this point. But how exciting that you’re so close now to a solution. Onward and upward!

    Mike

  14. Laurie Samuels Says:

    Harry and I are so glad you are having these good days. While there will be challenges ahead, I am sure you will endure them with the same intellect and grace that you have been sharing with us…. we are wishing you only the best with what lies ahead. Know that thoughts and prayers continue to be with you, Lisa and the children. Love and hugs…..Laurie

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