Category: Uncategorized
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Preparation for Those Heading Into Transplant
I belong to a Myelofibrosis support group on FB. It’s been enormously helpful to read other people’s stories, tips, questions and answers. It keeps connects patients and caregivers. Myelofibrosis is not unheard of but it’s classified as rare. According to *chtGPT, there are approx 60K new cases of leukemia (a…
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Donor Communication
Before I get into donor communication I should let you know that R is back in the hospital with clots in his right lung. He should be discharged on Sunday. A temporary snag, that’s all. He’s getting through it. 🙂 **** We received a new letter from R’s stem cell…
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Home Sweet Home
R’s back home and ready to take on the next chapter. He barely slept the night before, so excited to sleep in our own bed, sip good morning coffee, enjoy home cooked food, bathe in the large shower stall with dual shower heads—hot water coming from both sides. And best…
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Transplant Whackamole
The last time I posted, R’s white blood cells and specifically, his neutrophils had started climbing, meaning the donor cells were kicking in. The neutrophils had been “too few to count” on prior lab reports but went to .1 then .13 and all the way up to .19 today. They’d…
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Oh Happy Day!
What a perfect way to leave 2025 behind and ring in 2026! 💕 All your prayers, good wishes and love pushed his body over the edge—the donor cells are starting to engraft. Oh happy day! His white blood cells went from .11 to .13 and his neutrophils (infection fighting part…
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A Very Different Christmas
Where to start? R’s had some ups and downs. His stomach cramps became absolutely unbearable, making it impossible to sleep. The first 10 days he could get 2 hours at a time up to 4-5 hours a night. For the last week, it’s been maybe been an hour and a…
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We Knew the Smooth Sailing Wouldn’t Last
R went from walking the halls a mile a day to barely able to sit up, almost overnight. Stomach cramps started four days ago and have continuously gotten worse. The team finally had to give him control of his own pain management by installing one of those little buttons as…
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A Feeding Tube Plus…
My last post on December 12th included a snippet of our relationship history. Many of you commented about and seemed to enjoy it. Family and friends know I’ve published 3 books, 2 young adult historical fictions and 1 dark comedy/cozy mystery. But…motivation and ideas have dried up as of late.…
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Hip Hip Hooray! It’s New Stem Cell Day!
Today is R’s “re-birthday.” The first donor cells went into his body at 5:20 pm. Halla-freakin-lujah. They arrived at SeaTac around noon, all the way from Germany. It’s interesting how many stem cell donors are from Germany. Apparently, it’s part of the cultural norm to sign up. Armed services members…
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Another Scary Episode, This Time with Jakafi Withdrawal Syndrome
This post might be of most interest to those taking Jakafi and preparing for transplant, although what happened to my husband yesterday is uncommon. Things seemed to be going smoothly R’s 1st day and a half in the hospital. His plan includes 3 days of “Fludarabine” chemo, the milder chemo…
Myelofibrosis--A Personal Journey 