This last week we had some dramatic changes to the norm. Thursday I woke up and didn't need to barf. I think it is the first day since coming home from the hospital that I didn't run into the bathroom as soon as I opened my eyes. In fact, I didn't throw up once that day. And then it happened again Friday. Saturday I woke up feeling good just the same. Man were we feeling confident. So confident I ate a couple pieces of pizza Saturday night, and really regretted it.
We are back to barfing, but not as consistently. We have our bad days, but can finally mix it in with some good ones.
It's hard to make sense of it all, but I'm doing good and bad. It's difficult to make peace with your mix sometimes. So far for me, I have been able to do this. I pray it can continue.
One of the really good things that's happening right now all around is the valley dressed in Spring. Another is the easy kids I've been blessed with (we now have a 14 year old in the house, which has had it's difficult moments). The best thing I have is of course Josh.
One of the bad things that is really getting me down is the stomach issues I mentioned above. I went the pain Dr. today to get my pain pump checked out and she said these issues are not due to the pain medicine because the pain medicine is just going to the spinal chord. This was pretty discouraging. I guess I hoped these were related and as soon as we could get rid of the pain meds the nausea would disappear. Get rid of the pain pump? They wouldn't even decrease the dose, even though I feel no pain ever whatsoever. She says I'm not in pain because of the pump, and we know I had tons of pain, so why would we mess with things?
Another bummer is that we couldn't pull the feeding tube, we just exchanged it for a G tube and ordered a longer J tube should the need arise we can try, try again. I think it was the right decision. I am having a hard time keeping weight on and in the case of a couple days I couldn't keep anything down it would come in handy for feedings and medicine. But a tube sticking out of your stomach is source of soreness and maintenance that is just no fun.
After losing 15 lbs, I think I'm down to 10. It has been constant diligence to get that 5 lbs. on. I have an appetite problem. I just do not feel up to eating much. It looks good, but I just can't stomach a bunch of really good food. I eat a little at a time and even then, there are no guarantees it will stick around.
I also take good long naps, and find myself falling asleep when I sit or lay down.
Although being sick is no fun, it is the worry of why I'm sick that has me down more than the actual illness. I certainly am starting to look like a cancer patient. None of my clothes fit in the right places. My hair will probably need to be shaved (I just keep hoping it's just thinning, and because it's short, shedding is not too annoying) which will complete the look.
Friday I get another dose of antiPD-1. Let us hope and pray that it is making a difference. I'm not sure when I get scanned again, I see the doctor next week and I can find out then. Thanks for your continued hope and prayers. They mean the world to my little family.