Day 27
Tuesday, Day 25, was an extreme fatigue day in which by the end of the day, I felt totally exhausted and therefore kind crummy all over.
Wednesday, Day 26, was a much better day. The thing is, I’m fatigued all the time, but if it’s not extreme and doesn’t get worse during the day, I feel like it’s a good day. The good days are good relative to the not so good days.
Today, Day 27, it’s somewhere between a good day and bad day. This morning, I went for my weekly clinic visit and got some exciting news. As a result of last week’s bone marrow biopsy, we found that 100% of the bone marrow is from donor cells and there is no evidence at all of any host cells or excessive blasts from the host cells. Most people see this around Day 30, and mine showed at Day 21. This doesn’t mean I’m cured, but it does mean that the transplant totally took and wiped out the diseased marrow, and that’s big. We’re all still wondering if and how the GVHD will be manifested.
My blood counts today were also quite good today with my Hgb and Plt both up.
WBC – 4.1
Hgb – 11.8
Plt – 223
I was talking to one of the nurses this morning about my constant fatigue and she said it’s normal. I said that I had to give up on the idea of getting a little stronger every day and she said that was true and that I would feel better rather suddenly. When I asked when that might happen, she said after about 6 months! K
There is a little concern about my rapid weight loss ( 30 – 35 pounds in the last 4 or so weeks), but my doctor is not too concerned because he says he often has to slow patients down on the eating later.
Finally, I’m scheduled to get my PICC replaced by a double lumen Hickman catheter on Monday. The doctor said he doesn’t like to leave a PICC in for more than about 3 weeks because they can get clogged and infected more easily than a Hickman. The double lumen Hickman is just like the one I had in before except that it has two lines instead of three. He says I will need some kind of central catheter for at least another 8 to 10 weeks.
A day at a time.
Love,
Justin
Wednesday, Day 26, was a much better day. The thing is, I’m fatigued all the time, but if it’s not extreme and doesn’t get worse during the day, I feel like it’s a good day. The good days are good relative to the not so good days.
Today, Day 27, it’s somewhere between a good day and bad day. This morning, I went for my weekly clinic visit and got some exciting news. As a result of last week’s bone marrow biopsy, we found that 100% of the bone marrow is from donor cells and there is no evidence at all of any host cells or excessive blasts from the host cells. Most people see this around Day 30, and mine showed at Day 21. This doesn’t mean I’m cured, but it does mean that the transplant totally took and wiped out the diseased marrow, and that’s big. We’re all still wondering if and how the GVHD will be manifested.
My blood counts today were also quite good today with my Hgb and Plt both up.
WBC – 4.1
Hgb – 11.8
Plt – 223
I was talking to one of the nurses this morning about my constant fatigue and she said it’s normal. I said that I had to give up on the idea of getting a little stronger every day and she said that was true and that I would feel better rather suddenly. When I asked when that might happen, she said after about 6 months! K
There is a little concern about my rapid weight loss ( 30 – 35 pounds in the last 4 or so weeks), but my doctor is not too concerned because he says he often has to slow patients down on the eating later.
Finally, I’m scheduled to get my PICC replaced by a double lumen Hickman catheter on Monday. The doctor said he doesn’t like to leave a PICC in for more than about 3 weeks because they can get clogged and infected more easily than a Hickman. The double lumen Hickman is just like the one I had in before except that it has two lines instead of three. He says I will need some kind of central catheter for at least another 8 to 10 weeks.
A day at a time.
Love,
Justin
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