Day +184: Are you gonna cruise the miracle mile[stone]?

I had my six month follow-up at Johns Hopkins today. They drew sixteen vials of blood, and I had a bone marrow biopsy, my 7th. Most of the results won’t be in for a week but overall, the doctors think I’m doing great. They are concerned about the continued stomach issues and took me off the Dapsone antibiotic. If things don’t improve in a couple of weeks, they want me to have another endoscopy. They also said that my dry eye and dry mouth problems might not go away but may be an autoimmune condition they’ve seen in a few other patients called Sjögren’s syndrome, ironically pronounced SHOW-grin. Surprisingly, they were not worried about the high ferritin levels, saying they see it a lot post transplant, and it should take care of itself over time. They will continue to keep a watch, however. Finally, they really want me to complete the full year of Vidaza treatments, “A little pain and suffering now, gambling the payoff will be worth it in the long run,” i.e. prevention of relapse.

Today’s CBC:
WBC: 4370 (norm 4500-10500)
ANC: 2450 (norm 1400-6500)
Platelets: 307 (norm 150-450)
RBC: 3.39(norm 4.00-6.00)
HGB (hemoglobin): 11.8 (norm 11.0-18.0)
HCT (hematocrit): 35.0 (norm 35.0-60.0)

I posted some pictures from the last couple of months in the gallery.

I’ll post again next week after I get my results back.

Day +181 tagline:
Runaway Train, Elton John and Eric Clapton (partially IDed by Leslie)


  1. Sounds good to me. Have to check the new pictures. Just saw some new ones on FB. They were great! Glad to hear such positive news. Love you.

  2. Sherry Kirchner

    Hang in there baby, you are doing great! We think of you often. Take care.

  3. Congratulations on 6 months! Sounds like a pretty good check up. I can’t believe nobody I’d Billy Joel, “It’s still Rock n Roll to me”.
    Lots of love.

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