Battle Hymns of a Hot Mess Mom

My New Year’s Day morning was quiet. It was exactly what it needed to be. We all slept in until about 11:00am and J made us an incredible biscuit and gravy brunch. Now only is that one of my favorite meals but the fact that I was able to stomach it was even better. I lounged around until the wind died down and went for a little walk with J.

I think I built up Transplant in my head and what I needed to do to get to Transplant that I never considered what to do after Transplant. What now? Because I didn’t really give it much thought I’m kind of wandering in this pool of uncertainty. What is recovery and how do I answer? How are you doing? Because I feel like the expectation is that I’m feeling better except I’m not always feeling better. Sometimes I do feel great but other times I feel like trash again.

The Transplant Coordinator called me today on our way home; I still have her number saved in my phone contacts so of course instantly seeing her name made my stomach cringe. Dr. P ordered a booster transplant for me on the 11th. I’m going to go get T cells. My biopsy at my 30 day while the majority was clear the MRD came back with some inconsistencies. It didn’t show that it was negative or positive it showed inconclusive so I will need to repeat the biopsy until then the T cells are meant to give me a boost. The ability of recipient T cells to recognize donor-derived antigens, called allorecognition, initiates allograft rejection. Once recipient T cells become activated, they undergo clonal expansion, differentiate into effector cells, and migrate into the graft where they promote tissue destruction.

It makes me a little anxious, but the fact that Dr. P ordered it tells me that he wants to do every i and cross every t to ensure that this leukemia is cured. I try to Google cancer recovery and they say it’s six months to a year. Today is Day 70. I should be feeling better by now right? Yet I feel okay. I don’t feel as awful but we’re not exactly a rockstar. Climbing up and down the stairs still exhaust me. I get tired walking distances greater than 1/4 mile. If I stand too quickly I get super dizzy. My bones hurt and sometimes I have no idea why they start to hurt so much. I have a hard time regulating my body temp so I’m often “freezing” even when it’s 70 degrees and my fingers and toes hurt. So I guess I feel okay. At least that’s how I think is the right way to describe it.