I'm sitting in a bed at Ellis Fischel, about halfway through my second unit of red cells for the day. I've been here since 8 a.m., and it's going on 4 p.m. Transfusions have become a sort of part time job. So far I've needed a blood transfusion about every other week. My platelets haven't been holding well -- I had a unit last Friday, again on Wednesday, and they're in the 30s again today, so I'm sure I'll need more on Monday. I get them anytime the count drops below 20 -- an average person would want to be 150 on the low end, just to give an idea. Anything below 50 is dangerous. A few weeks ago I hit my record low of 7. I don't want to get back there.
I met with Dr. Perry on Wednesday and we will continue with chemo next week as planned. Just like last time -- five days and then off for three weeks. At this point I haven't shown any significant GVHD so I expect to have another DLI 10-14 days after this round of chemo. I don't really have much to say as far as disease progression goes. The chemo drug we are using causes the counts to jump all over the place so there's no real way to tell what's going on at this point. I expect to have a bone marrow biopsy/aspiration after the three month point, sometime in May. Somedays I feel really good, and other days I'm wiped out. My husband compares it to pregnancy when people ask how I feel. I'm tired, nauseous and my iron is constantly low.
I continue to be grateful for each healthy day (outside of GVHD). We have focused on supplements that we feel aid my immune system and I've been thrilled to make it through the past three weeks of low counts without getting sick. I am continually reminded of the risks -- so many AML patients end up dying from something like influenza or pneumonia. If I can stay healthy, I have time to fight this. My absolute neutrophil count (ANC) had been sitting at about 100 but was starting to climb as of Tuesday. They like to see it at 1000 before starting another round of chemo.
As always, thanks for your prayers and for the many ways you bless us.