For the third time around, we do not have the road all figured out by a long shot. I have continued to struggle with the long promised diarrhea (didn’t happen the first two times at all, as “he has a lot of extra colon there”, but this time is quite evident and troublesome). They took a goodly amount of bowel out again, we are now running in the “none to spare zone,” so am sure that contributes to the situation also. Plus, I have had trouble with considerable gastric reflux since the first surgery (only had it before with coffee, OJ, pineapples, so avoided them and did fine) but that also has become quite unmanageable despite maximal therapy attempts so far. So, have been struggling with trying to figure what to put down the mouth without making things worse while trying to maintain hydration with the other. So far, am at home with an IV going to keep hydrated.
We received one unit of blood to drive me up to 8.2 (normal for them is 13-17) and that has made me less wobbly. I have been keeping the pain as tolerable as possible with one Tylenol ES every 3 hours as anything else seems to have unacceptable side effects but it does hinder ambling around the old homestead for the donkey. We managed to get discharged on Wednesday, the 20th and see Dr. Bartlett on the 21st with a positive report, he is hoping to have given me a couple years of life with the surgery and we are thankful. Our dear friends from church, Howard and Kathy Sytsma again brought us home from Pittsburgh, coming in our Durango and bringing us home on the 22nd, quite uneventfully, although I ate and drank nothing to keep from unneeded pit stops, especially at inappropriate moments. So, I am safely back in my home and my hospital bed, so much nicer nights, even when I don’t feel so good, it is good to be home.
I still have both drains in my abdominal wall to protect the large sheet of mesh as well as over 60 staples, all of which I will remove when the time is appropriate and I can stand the fun. Overall, I am making good progress, just the reflux and diarrhea is not manageable despite my vigorous attempts to do so. Pray for wisdom in treating these two problems so that I can return to normal health and function. I am still waiting to hear when we have to return to Pittsburgh for leukopheresis (not sure I spelled it right, they will draw off my white cells to incubate with my cancer cells to try to stimulate some of my own “killer T cells” against the cancer left in my body) and then 3-4 more visits of a week each to receive injections of the vaccine they created plus 3 different meds to try to slow down the cancer. This is all very experimental, no idea if it will help, hurt or do nothing, so also need prayer for that. However, first of all, I need to get the donkey back on his feet from the GI issues to be able to even consider the next treatments.
Once Again, Thank You so very much for your prayers, encouragement and help.
In His Service,
Bill, Karen, Rachel, James and Jenn Ten Haaf