So... I came on here to write a blog about books I'm reading and how that relates to my cancer that is partly recommendation for a couple of books, partly about my own writing and partly (of course) about my fight with cancer, but I realized first y'all might like an update on all the post-surgery hospital shenanigans, so that post will be next. Probably in a few minutes.
The first post out of surgery, I was pretty upbeat. I was surprised at how little pain I was in, and not even that much discomfort. Maybe all of the really worst-case scenarios were just that, and this was gonna be a relatively easy cruise back to normalcy.
Standard warning for grossness and TMI (Too Much Information) applies here. You have been warned.
Things were going well as I went from clear liquid to full liquid to full diet. Everything was moving through my system properly, colostomy was working, I was physically pretty strong and having no trouble getting up and walking around, beyond the logistics of getting out of bed with a catheter, an IV, an epidural and three drains attached to me.
However... when I asked the nurse if there was anything I shouldn't eat or be careful about, she told me that no, I was fine to eat whatever. This same nurse would later admonish me, as if I had never asked the fucking question, that I shouldn't have eaten what I did when I was later having trouble. This is one of the many complaints I'd make about MD Anderson's nurses and follow-up care, and one of many times I was glad not to be strong and fast enough to get up and strangle someone.
So I had a breakfast of ham, potatoes and french toast (which sounds like a lot, but I didn't eat all of it, in fact most of the french toast went to Suzanne) and that seemed to settle fine, so for lunch, I got a ham and grilled cheese. What followed was one of the most painful and uncomfortable nights of my life, vying with the pain I had when my gall bladder was unknowingly infected back in '99, as the gas and my still-wounded intestines struggled with what I'd eaten.
All the easy recovery was out the window at that point. I went back to clear liquid, and had to take a couple days for my guts to stop punishing me. By Thursday, I was back on full diet, albeit being much more careful about it. Suzanne headed home to be with the kids on Wednesday, we both wished she could be in both places but we also both really wanted her to be with the kids. My parents stayed with me.
Before we got to that point, though, we had another complication. Much to my relief, we took the catheter out on Wednesday, and I was going to get to pee on my own. But my bladder/urethra, etc., having been manhandled quite a bit during surgery, was not ready yet, and I wasn't able to (as they put it) "evacuate" on my own. Well, I was, but only on the floor, only unexpectedly, and not everything in my bladder.
Let me tell you, there's a particular blend of embarrassment, frustration and pain that comes with a swelling bladder, peeing uncontrollably and a nurse who (like all the goddamned nurses) doesn't really have much to offer in the way of help other than "Have you tried walking around?" To be fair, Elijah (my nurse for that night who had also been witness to the horrible night of intestinal pain) did the right thing, called a urologist to consult, and they decided (against my strenuous, terrified objections) to put the catheter back in.
I don't know if you've ever had a catheter put into you while you're awake. If you haven't, I'll say this: It's not as bad as you'd imagine. I'll also say I don't particularly recommend it. At any rate, while I didn't want the damned thing back in, and certainly didn't want to go home with it (which I now have to, for a couple weeks), the relief it gave me was almost immediate and totally worth it. I'm just left with the fear of permanent peeing problems and having to self-catheterize myself 3-4 times a day for the rest of my life if it doesn't fix itself by the time we come back for my appointment on the 20th.
You read that right. Multiple self-catheterization. That is pretty much the big bad of all scares I had prior to surgery, and I am thrilled to death that it's still on the table, as you can imagine. I don't think it's likely, but man, if anybody's doing any praying, please mention that in particular, will ya?
Anyway, after over a week of brusque nurses waking me up for vitals and blood draws while I *desperately* needed my rest and wasn't having en easy time getting to sleep, of getting conflicting advice and information from different nurses and doctors thanks to the sheer size of MD Anderson and their less-than-impressive surgical after-care, I was discharged on Thursday afternoon to the hotel room adjoining the hospital, where I will be staying with my mom and dad until Tuesday, when I go back to get the last two drains pulled out of the wounds on my butt, and am able to leave with only one tube stuck in an unpleasant place.
There was an unpleasant misadventure on Thursday night with the MD Anderson ER, a three-hour wait for literally no help at all and the first jackass of a doctor I've felt like physically striking in this hospital, but that's a long story, and this is already a long post. Last night I was able to sleep relatively well, if not for long, I've got my computer, iPad and wi-fi and have no lack of entertainment, and Suzanne should be here in a few hours with the kids so we can spend a couple days together. Pain and discomfort is relatively minor, too, so other than the looming fear of more complications, we're in a good place and looking up from here.
The weird bright side of all this is that in all the hassle with drains, gut pain and pee fears, the colostomy turns out to be no big deal. I mean, I hate having it and wish I didn't have to, but it's the easiest thing in the world to deal with and it will have little to no real impact on my life once I've healed up everywhere else. So that's a pleasant surprise, at least.
Anyway, the takeaways from this post should be this:
1. Recovering from surgery would have been much, much better at St. David's Round Rock, where every single one of the nurses and doctors just rocked, the rooms were bigger and nicer, and I never felt like nobody really gave a shit as long as they got their scheduled vitals stuff done. Don't get me wrong, the nurses have a gross, difficult job to do, and I appreciate that, but with rare exceptions, most of them were surly and it was frustrating to be constantly told "let me know if you need anything" only to get dirty looks and attitude if you actually deigned to take them up on that offer.
2. My wife, my mom and my dad are amazing and I could not have gotten through all this without them.
3. I'd rather poop in a bag than pee in a tube.
4. I probably will not eat grilled cheese for a long, long while