Day +58: I’m comin’ home, I’ve done my time

I saw my transplant doctor today. He’s the head of the Transplant department at Johns Hopkins. No results from my biopsy until next week but problems are not anticipated at this stage. My blood counts are good – I forgot to ask for a copy so don’t have the specifics today. He thinks I have a mild case of skin GvHD but not enough to treat. It’s good because it’s also Graft vs. Leukemia.

He recommends that I do another year of Vidaza treatments. They’ve discovered that in case of relapse, it helps keep the cancer at bay. They also believe but have not yet proven that the Vidaza can actually help prevent relapse. That sounds good to me, so I’ll be returning to my one week of treatment each month with my hematologist close to home.

The best news is that I’m released to move back home. I was going to go today but we have no power at the house, so I will stay at the apartment one more night. More good news is that I’ll have surprisingly few restrictions–most are common sense type stuff like staying away from sick people and not eating undercooked fish, meat or eggs. I should be sensible but not live in a bubble. I’ll continue with prophylactic antibiotics and antivirals for a year. My nausea is fairly well controlled with antinausea drugs, and we hope it will eventually go away. My taste buds are fast returning to normal for most foods I’ve tried. I need to remain vigilant in watching for signs of GvHD and report them immediately. I need to be extraordinarily careful to avoid even the slightest sunburn. I’ll see the transplant doctor again in two weeks and then return to my hematologist’s care locally. I’ll have routine follow-ups at Johns Hopkins 6 months and 12 months post-transplant.

The not as good news is that the doctor wants me to put off getting my hand fixed as long as possible, no sooner than six months. He fears the trauma of the surgery might trigger an episode of GvHD.

We won’t be posting to the blog so often anymore, but feel free to email either of us if you have questions or concerns. I currently don’t have any medical appointments scheduled until Feb. 10! We still have a long ways to go but all is very positive at the moment. The doctors and nurses keep reminding us that BMT is a marathon, not a sprint.

Thank you again for all of your continuing love and support. I don’t know how we could have managed without it.

Lots of love,
Karen & Michael

P.S. I’ll leave it to Michael to wrap up the tag lines in a future post. He’s busy digging out our home from last night’s snow storm so I can come home tomorrow.

14 Comments:

  1. Oh, HOORAY!!!! I’m so happy for the both of you. Assuming you can get back home and the power comes back on and all that. But so glad things are going well. We have been praying for you lots and lots and lots.

  2. Yayyyyy!

  3. Such wonderful news!! I am so happy for you guys!

  4. Hooray.

    And

    Tie a Yellow Ribbon
    Tony Orlando and Dawn.

  5. Absolutely tie a yellow ribbon; there would be one on each one of your multitude of trees at the house if I lived near by. I read the message while waiting for someone to return to the car. When they got in, I just said I was going to cry. Thank you to all who prayed for Karen, sent her cards, lifted her spirits. And thank you most to Michael, Joan and Warren who were there to help her. Many prayers tonight in thanksgiving and also for continued healing. Maybe we’ll see you at the wedding. Love to all, Linda

  6. Im so glad I got on the net today! What great great news guys!!! Im so happy for you BOTH!
    happy happy joy joy!!!!!!!
    lots of love from Josefs….mostly ME!!! 🙂

  7. Welcome home! I pray that things will continue to look up! Did you speak to the cleaning lady? I hope she will work out! God bless!

  8. Karen,

    Fantastic news! Congratulations. I hope that the days to come are even better than your days so far. Very glad to hear that your mouth is starting to recover.

    The very best of luck to you.

    Greg

  9. That’s so great to hear! I’ll bet you can’t wait to see the kitties – and I imagine they were climbing the walls of your A-frame missing you.

    Love,
    +Tony+

  10. Andy Thomas and John

    This is awesome news!!! Hope the power comes back on at your house so you can get back home to your family! I’m sure they miss you as much as you miss them!! Let us know if there is anything we can do!
    Hugs,
    Andy

  11. Karen and Michael,
    I have been following your progress and am so glad for you Going Home. I was diagnosed in Oct, 2010 with MDS w/excessive blasts. Was told from the very beginning that a Transplant would have to be the route to go. We are in the process of getting my siblings tested for matches. I to will have to be away from home through the entire process as we live over 200 miles away from the hospital where I’m having all done. Dr.s are still not sure which treatment they will follow to start trying to get remission before transplant. So, I’m in medical limbo and scared to death about the future. The reason I’m writting is that I also am 57 yes old and you are my hero that you have gone through all of this and are apparently coming out the other side. You give me hope on the days when there seems to be so little. Keep me informed as I love your posts and like I said they give me hope that maybe a year from now I can inspire someone else to go for it.
    Linda in Indiana

  12. I have been following your blog since the day of your transplant. I found you through marrowforums.com. My 51 yr old father is about to undergo a BMT in the next 2 weeks with his older brother being the donor. We have been on pins and needles (as I am sure you understand that) waiting for this day to come. I am so glad to read your blog everyday and you are a true inspiration to us. I hope we go through your transplant without a hitch. You and your family are in our prayers and hope you continue to heal well in the future.

    Thanks for this blog, it has been amazing following you through the days. Congratulations on going home….what an amazing feeling!

  13. Great to hear!

  14. I guess I should have read this post before Day-60. Oops! Oh, well. The important thing is that you are home. Keep doing what the doctor says. I hope the time flies and your typing improves till you get your hand repaired. Darn that you have to wait. But it does look like that is the best. Just be patient.
    Love you.
    Cathy 🙂

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