Category: Uncategorized
-
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…
-
🥺🥺🥺🥺 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…
-
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…
-
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,…
-
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…
-
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…
-
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…
-
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…
-
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…
-
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…
Myelofibrosis--A Personal Journey 