Warning: Many references to my butt in this post. In fact, this may be the grossest, most TMI post about my rectal cancer that I've had. I do apologize.
Been a while since I posted, sorry about that. I'm also sorry this has become "Randy's Cancer Blog" but it's the best way to keep up with family that aren't on my Facebook (and you guys don't want to be, it's mostly politics, inappropriate pictures, cursing and talk about comic books and food) but I guess as topics go, it's kind of one you need to cover.
This week was the big trip to Houston. Well, OK, technically October is the Big Trip to Houston for the surgery, the whole reason we're going to MD Anderson in the first place. But this was the "here's all the scary stuff about the surgery you were already terrified of, and it's going to be worse than you thought" trip.
But before that... and I gotta warn ya, this is gonna get gross (again)... I had another complication. The stupid abcess that got infected back in April and landed me in the hospital just in time for my cancer diagnosis flared up for the third time, and I had to go in on Wednesday for a quick surgery so they could slice open my butt. Which is nobody's idea of fun.
OK, that's not true, this is the Internet, and I'm sure it's somebody's idea of fun. But if it's your idea of fun, for God's sake, don't tell me. I don't want to know.
Long story short, it went Friday-Saturday-Sunday increasing amounts of pain and attempts to deny that it was infected and I needed surgery, Monday visit to Texas Oncology and admitting that I needed the surgery but hoping it could be quick and easy, Wednesday having it done and it was relatively quick and relatively easy, but it still hurt like hell. Then Friday-Saturday-Sunday increasing amounts of pain, worrying that it was still infected, until thankfully on Monday, right before the trip to Houston, it started feeling better and we were sure the slow healing was because I was still irradiated, which slows down the healing process.
Negating everything comics have ever taught me, by the way.
So Monday we drove down to Houston. I don't know how many of you have ridden in a car for three hours with a hole in your butt, but I don't recommend it. I survived the trip, though, and Tuesday was the day to meet with everybody. Thankfully, since I have an irradiated butt, they weren't poking and prodding too much, and the soreness I had was down to sitting for a long time in uncomfortable chairs and walking from place to place.
Our first appointment was at 9:15 with genetic counselors, but they were running late, and that threw the whole schedule out of whack, so we were late the whole day. Which meant more waiting. We finally got out of there about 3:30. During that time, I learned that I probably have genetic damage that caused the cancer, and that further testing might prove it for sure, but if the testing comes back negative, we can never be sure, so I'm going to have to act like I have the genetic disorder. In other words, colonoscopies every year! Hooray! And our insurance doesn't cover them! Hooray!
Next up was the meeting with the plastic surgeon, who explained how they're going to reshape my butt after the surgeon removes a great deal of it on Halloween. I'm not kidding, he used the phrase "smoking crater" to describe it at least half a dozen times. And they talked about taking muscles out of my stomach, and the possibility of also having to take muscles out of my leg if there isn't enough in the stomach. So that was scary. I also found out that recovery is going to be about 7-9 days (in Houston!) and that I'm gonna have drains in me, and all this extra stuff, and it sounds like I won't be in decent shape until probably after Thanksgiving. I'll have to go home, mess with drains and colostomies (more on that in a second), go back and have the drains taken out, make sure everything's healing, hope I'm not in the 10-15% that develops a hernia, etc. etc.
Then it was off to talk to the actual colorectal surgeon. And maybe it's just a surgeon thing, but I swear to God every time I talk to a colorectal surgeon the news gets worse. I was already dreading the operation, but this thing is gonna hurt like hell, totally reshape my body and wind up with a lot of gross after-effects. The word "catheter" was mentioned casually, but fortunately so was the word "epidural." Other fun words include "erectile function" and "entire anus removed." We don't know yet how much the radiation got, and we won't until just before the surgery, but the possible side effects of the surgery could be pretty huge if it didn't shrink the tumor enough and a lot of stuff has to come out to be sure we get the cancer.
Then we went to talk to the colostomy nurse. If it wasn't happening to me, I'd find it darkly hilarious that she tried so hard to convince me that having a colostomy wasn't going to be a big deal. That it's really just having a butt in the front that you have to empty out. Like that isn't a big deal. The brochure about colostomy is equally hilarious to me, it looks like a pamphlet for a community college, except instead of getting a 2-year degree in A/C repair, it's about getting a hole in your stomach that you poop into a bag out of.
On the upside there were two things. One was that we had to grab something to eat at the cafeteria while were there, and I got taco soup, which was *full* of beans. I risked it, even though that's forbidden on the low-residue diet, and had no bad reactions. So I may get to relax the diet a bit and eat what I want for the next month. Carefully, of course, the last thing I want is more digestive problems.
The other is that we found an awesome Cajun place, Crescent City Beignets, thanks to Urbanspoon, and I got gumbo and beignets and Suzanne had a muffaleta and beignet and they were delicious.
Wednesday was my blood draw and meeting with the oncologist, which was kind of a frustrating day. We're doing all our chemo/radiation here in Austin, and so the oncologist always checks in, chats for five minutes and leaves. It's always, always a waste of his time and ours, and that meant another night in the hotel room. If we could have just done the blood draw at the beginning or end of the day on Tuesday, we could have gotten the hell out of Houston a day earlier.
The drive back was a little rough, since I was sore from all the walking/sitting on Tuesday, but I got a lot of sleep on the way back and once I got home and am now feeling much better in general. With any luck, the slice will heal up, the radiation will heal and I'll get roughly a month of being relatively normal. No chemo, no radiation, a minimum of doctor's appointments. I intend to eat, drink and spend as much time with friends as possible in that month, because after the surgery, I think I'm going to be a grumpy bastard for a while, and I know I'm not gonna enjoy November and December much. With any luck, the last round of chemo after surgery won't be too bad (even though it's gonna be a financial blow, since the insurance deductible will reset in January, meaning we'll probably be in for another $10-20K... we've got it in various savings/loans, but we'd rather have the money for, y'know, the kid's college or something) and I'll be adjusted to the colostomy and healed up and cancer-free in time for my 42nd birthday in April. But that now seems like a long way in the distance, and October 29th (the start of surgery hell week) looks awfully close, even though it's more than a month away.
But... big picture, all of this is in service to getting rid of a disease that could kill me. So the side effects and pain, terrible though they are, will hopefully fade into memory as I get another dozen years or more to spend with my friends and family.
Even if those years are spent pooping into a bag. Which, again... if that's your idea of fun, for the love of God, don't tell me.