Category: Uncategorized
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Update # Umpteen
People have been asking how R is doing with his cancer relapse. Endless thanks to you for your care and concern. This week he starts his 2nd round of chemo—7 simultaneous days, followed by a 3 week break. The goal of the chemo is to repair his bone marrow enough…
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Cancer Relapse
Yes, R’s myelofibrosis is back just 7 months after his bone marrow stem cell transplant. We are waiting on final results from his most recent bone marrow biopsy but what we know so far is—R’s cancer cells have resurfaced in a big way. The team at Fred Hutch plans to…
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Chimerism (Ky-mer-ism)
So what does that strange word mean? It’s the percentage of cells, post-bone marrow stem cell transplant, that are donor-derived versus recipient-derived. It’s revealed by a simple blood test, and there are 2 types of blood cells the doctors care about–each type performs a critical function in the body. For…
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Long-Term Follow-Up and Other Shenanigans
I figured some of you might be wondering how R is doing. He gets that question often when we go to the cancer center. “How are you feeling today, R?” Usually the answer is, “I feel good!” Other times there’s a bit of a hesitation. He still gets dizzy, has…
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🥺🥺🥺🥺 Out of the Blue
R is back in the hospital. His BP dropped to 50 over something out of the blue and he went into shock. Paramedics transported him to the local ER. Doctors ordered a lot of tests and still can’t identify what caused the crash although there’s suspicion of internal bleeding because…
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Day +70
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…
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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 connects patients and caregivers in a club to which no one wants to belong. Myelofibrosis is not unheard of but it’s classified as rare. According to *chtGPT,…
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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…
Myelofibrosis--A Personal Journey 