Lovebuch family happenings

Tomorrow will mark 2 weeks on 8NE. Overall things are going well, although there has been some low points that come along with 5 days of chemo and no immune system.  It has been helpful to know what to expect, this being the 2nd time around. Many things are the same: the 7am nurse shift change, a mid-morning visit from the PA, a call down for protein-rich breakfast (2 eggs, blueberry greek yogurt, cottage cheese, sliced peaches), a late-morning visit from the doctor and PA.  Then it transitions into slow afternoons, trying to walk some laps, some tv, some visitors, and an annoying night of being woken-up 3-8 times for vitals and blood products. Some things are different though. This time around my biggest complaint is my feet. They are swollen and angry and at times hurt like hell. The biggest source of anger comes from a side-effect of my immunosuppresant, Cyclosporine.  Although the pill form doesn’t cause the hands, feet, and face to get hot, the IV formulation does. Weird, I do

Dec 22: On Friday, Dec.10 , we got the news that the abdominal tumor was gone (yay!) but the cheek area showed some activity (boo). This was good news because the face is treatable with proton therapy, but the abdomen was not, so if there is still leukemia somewhere, better in the face, then the belly. However, the question of whether or not there is active disease in my sinus is up for debate. It’s unusual that a chemo treatment would be effective against one tumor and not the other. And It’s also possible that the sinus showed activity because I had a  cold or because the area was damaged by the tumor so it is a site of inflammation. There is no way to know for sure whether there is active disease in my sinus because a biopsy would be out of the question,, but for heading into a transplant, we decided that it’s better to be safe than sorry and we should treat as if it’s active. Treating it means 10 days of a focused proton beam to the face. There’s some potential long-term side-effec