Myelofibrosis–A Personal Journey

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Day +70

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He never lost his facial hair!

In the bone marrow stem cell transplant world, they count your progress by the number of days you are post-transplant. The day OF starts the clock as DAY 0. R is at day 70, exactly 10 weeks.

Besides the 2 blood clots in his right lung and the gout, the only other thing he had to deal with was the norovirus. Yes, the kind you hear about sweeping through cruise ships. Not pleasant but R’s case was mild.

Some big news: all the gene mutations R had that point to short-term survival are GONE. The donor cells have wiped them out, at least to the point they’re not detectable. There is a small chance one or more is still lurking around with the intent to multiply, but for now, they’ve been evicted!

R has to go in for frequent blood tests and infusions of platelets and red blood cells. His blood counts are extremely low. For example, the normal range of platelets is 150-400 and R is at 51. Platelets thicken your blood and enable it to clot so you don’t bleed out if you get a bloody nose or have a brain bleed because you bumped your head.

Want to help save someone’s life? Donate blood or platelets at your local blood center or Red Cross.

We spend our days going back and forth to the cancer center. With freeway lane closures, the traffic stinks, but who cares? R feels good! He’s puttering around the house fixing things (little stuff that’s safe for him to work on), does not require a walker anymore and thinking about travel and all the stuff he’s going to do in the yard. The medical team says he’s “ahead of the curve.”

Every now and then they give him a day off.

Mind you, he’s not in the clear…things could go south again, but at this moment, he’s practically his old self.

Hallelujah!

He loves getting your texts, calls and notecards. Your love and support have lifted him up every step of the way. People he hasn’t seen in years have reached out, including a student from his very first class (3rd grade). She explained what a monumental impact he’s had on her life and that she thinks of him fondly from time to time.

One response to “Day +70”

  1. Victoria Fredman Avatar
    Victoria Fredman

    yahoo!!! That’s fantastic news!! Go Russ go- you are a warrior kicking myliofibrosis in the ass!!! Much love to you all!!!

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