Day +107: Risin’ up, back on the street…

Happy St. Patrick’s Day!

I’ve spent too much time napping on the sofa this week so decided it was time to get out and do something different yesterday. First, I saw the local eye doctor. She said my eyes are still dry and to continue using the drops. The swelling under my eyes is apparently fluid accumulation but shows no signs of infection. She suggested using cold compresses and also suggested washing my eyes with warm water and diluted baby shampoo twice daily to help with the morning crustiness. Overall, the eyes look very good.

After lunch at my sister’s, I headed up to the Dansko shoe factory with my brother-in-law. It was a pleasant drive for the warm, sunny day, about an hour north. I was hoping to pick up a pair of “Tiger Eye” patterned patent leather clogs but they were out of stock in my size. (BTW, the previous sentence is also a hint for today’s tag line – no one’s been guessing much lately.) Instead, I got two pairs of “vegan” fabric clogs with beautiful swirly tapestry type designs and added sparkles. One pair is in reds, golds, and black and the other in greens and blues. I also got a pair of plain black sandals for summer. I haven’t given up on the tiger eyes. They’ll have more in a week or two. The factory store doesn’t carry the new styles for the current year but the shoes are half price (or close to it), well worth the trip for these very comfortable shoes.

After returning from the outing, we watched the old film “Scarecrow” (1973 starring Gene Hackman and Al Pacino).

I also had a very nice email awaiting me from my clinical trial doctor at Hopkins, a reply to the 100 day status update that I’d sent him. He says I’m doing great. He reassured me that the GI and dry eye and skin problems are all normal at this stage and re-stressed the importance of the prophylactic drugs and sensible precautions to avoid infections the first year while my new immune system matures. He also reminded me how lucky I am to not be taking Cyclosporine (immunosuppressive) which has many side effects and, in his words, “tastes like gasoline.” Recall the goal of the trial was to use post transplant Cytoxan to eliminate or reduce the need for immunosuppressive drugs to prevent/control GvHD. He said that only 10% of the study participants had developed GvHD thus far, compared to the 50+% average for transplants in general. Finally, he addressed some of Michael’s and my concerns about the post transplant Vidaza treatments and sent me a paper from a relevant study done at M. D. Anderson. This is new territory so there’s not much in the literature yet. The concept is promising, however, especially for high risk MDS and AML patients who have a greater danger of relapse (disease recurrence). At this point, I’m happy to deal with the minimal side effects and fatigue if there’s any chance it might help prevent a relapse.

I’ll give you some more time on day 100’s tag line. It’s okay to use Google or other “cheats”!


  1. That’s quite a hint! I got it. It’s a lot different than “Gonna Fly Now” from the first one.

  2. Mike Kienenberger

    Just because I’m musically-ignorant doesn’t mean I’m not following your blog 🙂

    I did correctly identify “I think I’m a clone now”.

  3. I love Danskos too. And I too am a musically-ignorant blog follower.

  4. Hi Karen,
    Happy St. Patrick’s Day to you and Michael as well! I know it’s been a rough road, but I’m glad you’re doing so well! Keep it up! God bless! Today’s tag line is a no brainer for me: Eye of the Tiger by Survivor. The song was used in the movie Rocky III.

  5. Hi guys…my family just left yesterday in a wake of destruction
    The pie should get made and deliverednext week. Wonderful seeing you both out and about… 🙂 Dana

  6. New shoes. What fun! You have a super brother-in-law to take you shopping. Glad you found something you liked.

    Also glad to hear you are still doing so well. Keep it up.
    Cathy 🙂

  7. Great news Karen! I want some of the new shoes you mentioned! I don’t have any factory outlets here to go to…. 🙁 Lori

  8. Congratulations and Happy Spring,

    With a few minor bumps it appears things are going pretty well for you. Mike had his 6 month BMB and all looks well so we’re happy, he had his first haircut today. Still being very careful, but things are slowly returning to a “new normal.”

    Deb and Mike (+175)

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