October 2nd, 2010
Home for a couple of days now. Such a relief after the hospital. Good naps with putney. Actually going outside (though it’s been raining since I got home). The option for real food. And uninterrupted time with my wife who is some sort of saint or maybe angel to be taking all this on with the level of grace that she is.
The big news, however, is that the ostomy has finally started working. And how! Gross. Important to call it what it is, I think, and what it is is Yucky. The nice thing about shitting the normal way is that there’s sort of a beginning and an end to it. Sure.. maybe you’ll have to come back in a while and do a little more, but you can decide “that’s enough, think I’ll wipe, pull up my pants, and go do something else for a bit.” Without a sphincter, it just sorta keeps coming.. on it’s own schedule. The last couple of nights, I’ve gone to bed with a bag attached to me with shit already in it, knowing that putting a fresh one on would be silly. Imagine cleaning up after your dog, and then tying that plastic bag to your belt loop and hanging out with it for the rest of the day.. or over night.. Right. Yucky.
It doesn’t help that the particular sludge coming out of me at the moment is something from HELL with a stench unlike anything I’ve ever smelled. The product of a drugged, hospitalized, constipated, wincing body.
I’ve been told that as I settle in and my bowel rhythms fall into line, that I’ll be able to irrigate once a day and empty out a good portion of the bowel, and then simply tape a piece of gauze over the thing and cross my fingers.. That would certainly be preferable. I don’t doubt that I’ll get there.
Yesterday, I had coffee and waited a while.. when I was fairly certain that my bowels had done what they were going to, I took the whole set up apart, took a shower, and started entirely fresh. I put on some clean clothes. I felt pretty decent. Went off to the doctor for a follow up. He felt that things were looking great, and even took out all the staples.. He replaced them with Garfield band-aids, and said that it was very important to keep a sense of humor. In what felt like a pretty offhand way he told us that he had removed quite a tumor. Two inches long and through the wall of the rectum. It is mildly confusing to me how this thing went from scar tissue spotted on an MRI that was “consistent” with the sort of surgery I had a few years ago, to an ulcer/lesion that might be treated with a suppository, to something of unknown dimension with viable cancer cells, finally to a REAL BIG BOY TUMOR with involved nodes. It is not as though I haven’t been under pretty close scrutiny. It would be pretty easy to jump to the conclusion that the docs had REALLY missed something. I don’t think that’s it exactly. It may be that there was a little undue optimism on their part, that made them believe they were seeing scar tissue.. I don’t know. In the end we found it. My surgeon told us that the good news was that it was completely removed (along with my continence), that the nodes were all local to the tumor, and not spread far and wide, and that I was young and otherwise healthy and would be able to stand outrageous doses of chemotherapy (oh boy!).
We left the doc, and I decided that I would venture on with Hill into the world and see how it felt. We jumped on a subway and headed down town. I thought maybe I’d go look for suspenders (my new uniform.. pictures soon.. and perhaps a dedicated post!), or stop in on the new location of a pool hall that I once lived at long before Hillary or any of you knew me!, or maybe go to the camera store to fondle a camera that I’ve been considering as some sort of retail therapy type purchase. By the time we got to union square, though, I was SO tired, and SO uncomfortable, and it was raining SO hard that it was clear I should probably go home and get horizontal. Oh well. It was worth the try. Each time now that I’ve been in the position to experience it, I’ve been shocked at the amount of energy it takes to heal. I guess when you think of what your body is having to actually DO it’s not shocking at all! Still the experience is strange.
“I’m feeling well, the pain is under control, I have ambitious plans, I want to see the WORLD!! I think I’ll just lay down for a minute.”
Thank you all for your emails and comments. I’ve been lousy at responding, but in my defense, there’s been a LOT of it. Please don’t think you’re being ignored. It is an incredible comfort to me to read you all. Keep it coming.