Just wanted to let everyone know I am doing just fine. I have been eating non-stop for a few days, and all that weight I lost over the holidays (12 lbs!) is back and has company. I have been on high dose steroids for 2 weeks now. They do crazy things to me, but mostly make me hungry all the time. In the hospital I couldn't indulge myself, but there is no one to stop me now. I will start tapering off the steroids next week and we will have a little more normalcy by the end of the month.
The holidays were very miserable. When I got to the point that I could not drink without throwing up, and every cell inside of me was parched, I really thought it was the end. I didn't even care at that point. When I had a fever, they were worried I had perforated my bowel (this is the danger with IPI colitis) and when they said I may have to have a temporary colostomy bag surgery, I asked if I would be able to eat, they said yes, and I said "Do it!!!" It did get a little scary. The reason we haven't tried IPI again was because of this risk.
Of course I should have been excited because in theory my immune system was also going crazy not just on my gut, but my cancer as well. I was too sick to care.
We will see on the 22nd what this did to my kidney tumors. I do imagine it helped. They will never give me IPI again because of my reaction, so I really need this to work. The colitis may have disqualified me for the Seattle trial. If this is the case, I think I would try and surgically remove what I had left, and then wait for the anti-pd1 (the drug I took in Florida) to be approved (should be this year) and go back on that.
This last hospital stay was humbling. When I was in the hospital for IL-2 I could barely walk out of the room most days. I was pretty oblivious to the others around me. This time I saw all the tears outside of the rooms, heard the words "treatable, but not curable" passing around the families, saw all the lines and contraptions everyone was hooked up to to keep them comfortable. Every time I would walk by the room with my name on it (12 laps around the floor is a mile) it startled me that I belonged to this world. So very grateful to be home.