Things rarely go as planned it seems in this business. Luckily, I have been stretched so much this year, I am pretty flexible. If I wasn't I might break on a day like today.
Yesterday 2 pm: They took me off of the schedule for the IPI infusion. The tests we were waiting for came back yesterday. Neither with good
results. The biopsies taken in the colonoscopy showed inflammation and
necrosis (is that what she said?) in the bowel. The calprotectin (which measures inflammation in
the bowel) is 7 times the normal limits. I was very depressed.
I try hard to plead my case for more IPI. I am asymptomatic (no diarrhea), have been off steroids now for over a week, and most importantly...THE DRUG IS WORKING.
Yesterday 5 pm: They put me back on the schedule for 12 today for the infusion, while they looked into the case more closely. I hope all night.
Today 11 am: I got the phone call that I will not be getting the infusion. Too risky. Bowel is being eaten up by my immune system. If I understand it right, the normal flora it contains is being attacked by my immune system, which now has no limits. The risk is eating it away so much I develop tears or holes in the colon. We give IPI again to an angry immune system and in some cases, can't control it after that.
Still. After the IPI, I am down to really one drug (the braf drugs). And it's usually only effective for x amount of months.
Josh and I have had a hard time with this back-and-forth. I prayed all morning that the right decision would be made. I have to believe this is the right decision.
I have to now put this into perspective. I have to trust that what happens after all I can do is in Bigger Hands. I have to remember that although one dose may be all I get, it may be all I need. I have to remember that I needed something to
work fast with my brain involvement, and that is just what I got. I have to believe that if my immune system is still attacking my colon, it is fighting the cancer too. I understand that another dose or two would not necessarily cure me anyway, or help more than just one dose. And another dose could do irreparable harm, could kill me faster than the cancer.
I cram these thoughts into my mind to keep other bad and depressing thoughts out.
I have another dose of Temodar in a couple weeks, and then we look forward to the big scans come Sept. 12th. Hoping, always hoping, for the best!