I feel like I am in that book/movie “News of the World” posting my daily news. Many things went on today. I had my lab tests and all were good. My ANC count rose to 600 – still low and requiring daily Levaquin, Hb/HCT hanging in there at 10/33, platelets good, magnesium levels holding on my oral supplements, and my kidney creatinine was a smidge better.

I had my pulmonary lung function testing today and waiting for the official results. The tech told me on the side that my tests looked pretty much the same as before I started transplant, so given my interim pneumonia that was encouraging.

We met with our doctor’s team and not so good was my weight. I lost 2-pounds this week and am almost at my all time illness low weight over the course of many of my treatments. That was worrying and I explained that I eat what I can, but my stomach seems full almost immediately on taking a few bites of anything. The worry is perhaps I am developing graft vs host disease of my upper GI tract. Very common in transplants and perhaps when I was on Prednisone which is a treatment for this, the problem was masked. Tonight I will begin a medication to stimulate my appetite and the ultimate diagnostic test will be a look down into my stomach, an upper endoscopy with biopsies. Turns out, this must be a big problem around this clinic because the next available appointment for this is Sept 1st. Depending on how I do this weekend, my team will try to move this earlier, especially because we need to know and that would be about 10 days from my 100 days, which could delay my return home.

Tomorrow I will have the adrenal cortisone stimulation test that I have mentioned previously. Next week has consultations with the pulmonary doctors, ENT doctors, and my 80-day bone marrow biopsy.

To be clear, my lack of appetite is not a problem with Sharon’s cooking. On the contrary she is a great chef and trying to hard to get me protein and calories. More to come.

Larry and Sharon