Battle Hymns of a Hot Mess Mom

Apparently J and I don’t know how to read or interpret the biopsy results. 0.5% represented normal blasts that everyone has. I questioned Dr P – does this happen? Like you said DLI doesn’t work like that. He said it can. Being off of the anti rejection medication for the study may have allowed the donor cells to have an opportunity to do its thing. I am being rejected because based on the biopsy I don’t present with cancerous blasts.

But I’m not celebrating. Slow down. I need to see some consistent biopsies. First one was a shadow in MRD. Second one was a 1.3% relapse. Third one was clear. That’s just too inconsistent for me to be whoop whooping. I’m going to need some more evidence to supports the claim.

Mentally and emotionally – I am tired. I acknowledge the results. That’s all I have. Next steps? Nothing beyond fighting off this pneumonia working on eating and exercising. Eating has been a challenge for me, a total shocker considering how much I love food. I managed to keep down two shortbread cookies, a banana pancake and 6 bites of chicken. That’s all I had in me.

New med lineup – a new antibiotic Vantin and cough syrup Hydrocodone Homatropine which apparently is a big deal because most pharmacies don’t carry it and needs to be specially ordered. Like…damn. We’re at abusing cough syrup now? During my monthly Zoom follow up with my Primary Care Physician Dr B – she joked that it was really hard to get these. She sometimes has a hard time calling them into pharmacies she said. She joked “When the oncologist calls it in, it’s a different ballgame.” My whole body hurts from the coughing today – but I have to get up and walk. That’s part of my job. I gotta do it. Rather just lay in bed and be a potato but I know I need to move the body.

Had a great catch up with D today, we text frequently but the phone calls just hit differently even if I coughed through most of the conversation. K dropped off goodies from her travels recently, I couldn’t make it fully down the stairs because quite frankly I would not be able to make it back up the stairs. So I sat at the landing and talked to her. We only had about 5 minutes before she needed to run, but it was nice to see her face.

We head off for camping tomorrow. I’m very excited for the change in scenery. The RV keeps me safe but I don’t just look at the same bedroom walls. The kids love it, and it’s local still in case I hit a fever. I can be safe but change the scenery.