On the Saturday after Thanksgiving I was talking to my doctor on morning rounds about staying for inpatient rehab vs going home.
Our conclusion was that while it would be beneficial for me to be stronger the PT obviously wasn't going to do anything to help my leukemia. And at this point things can go really south with my leukemia really fast. And it would be more beneficial to spend that time at home with family.
By south really fast I mean every week I make it back to the clinic my doctor doesnt work very hard to hide his surprise.
Once I came home I had 4 days of IV antibiotics which had to be administered every 8 hours. Except it takes half hour to mix the solution and half hour to run it. Plus having early clinic appointments MWF this week. So we were getting sleep in 6 hour bursts at most, sometimes much less for Alan. He even stayed up over 24 hours from Sunday afternoon IV to post-transfusion drive to Ann Arbor on Monday.
The one positive is that the oral chemo they put me on to lower my white blood cell counts is working. Right around the time we got back from orlando my WBC had sky rocketed to around 60 (normal range is 4-10) and blasts (leukemia cells) were 82%.
After a couple weeks on the chemo I'm back down to total WBC of 7.2 and blasts percentage of only 10%. The downside is that I am back to being extra low on neutrophils (the good wbc) which puts me back on high infection risk and my other counts like red blood cells and platelets are highly compromised too. These are an issue because of my brain bleed. If im low on hemoglobin im more likely to experience a fall and if im low on platelets a fall is more likely to be fatal.
This is making it harder and harder to justify leaving the house, even for appointments. Today on the way back in from my transfusions my leg just wouldnt lift up the stairs and Alan had to physically move my leg for me. And we are trying to minimize chances for falls so every time before we leave the house Alan unloads the (60 lb) wheel chair from the car, brings it next to the back door, helps me down the back inside steps (where we have to make sure neither of us accidentally falls into the basement), push me to the car, load all our other things for the day into the car, and reload the wheel chair.
I think that if I can make it through Christmas that I may decide to opt out of blood transfusions and enter hospice at that point, if things dont change for me strength wise with being able to get out of the house more easily. Plus monday my platelets were 5, I got a transfusion, and today they were 2. So I feel like they are just starting not to work anymore.
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