Thursday, November 15, 2012

40. Food

My sister has set up a thing online where folks can send us or bring us meals. I posted about it on Facebook, but I'm also posting it up here.

Saturday, November 10, 2012

39. The Importance of a Good Book

The day I was in the hospital and got my cancer diagnosis was also the release date for Jenny Lawson's book, Let's Pretend This Never Happened. Lawson's hilarious memoir (well, sort of memoir) was a big help in helping me keep my sense of humor on that day, and I was glad to have my Kindle Fire so I could download it and read it so easily.

This week, as I suffer through the recovery from my cancer surgery, I was happy to be able to use a gift certificate from my awesome sister Wendy to buy Alan Sepinwall's book, The Revolution Was Televised, on my Kindle app for iPad. Sepinwall's an Internet friend going back to when he was writing about NYPD Blue on Usenet and I was writing reviews on the comics part of Usenet, and I've always loved his TV writing.

The book is terrific, with chapters on the breakout dramas that have redefined television in the last decade or two, including Deadwood, The Sopranos and lots more. Mixed in with Alan's analysis are thoughts from the showrunners and writers who he interviewed, and it's a fantastic read, something anyone who reads Alan's "What's Alan Watching" TV recaps will love.

On top of making me want to re-watch The Wire, Deadwood and The Sopranos (so far), it has me wishing I'd written a book like this, about a dozen influential graphic novel series, back when I was doing more writing and had more access to creators. I don't think I'm capable of that book now, but I think I could have written it then, and I wish I had. Alan has provided the exact roadmap of format I could have used.

At any rate, I highly recommend Alan's book to anyone who loves TV and Jenny's book to anyone who loves off-beat humor. And I recommend books in general when dealing with cancer, a little change in subject and change in perspective is nice. I even stumbled across a Deadwood quote in Alan's section on Deadwood that I thought was particularly apropos and inspiring in my current state, from Deadwood's Al Swearingen:

“Pain, or damage don’t end the world — or despair, or fuckin’ beatings. The world ends when you’re dead. Until then, you got more punishment in store. Stand it like a man, and give some back.”

38, Post-Surgery Day Nine

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

Thursday, November 01, 2012

37. Post-Surgery Day One

So the surgery was yesterday. Halloween.

We got here late Sunday night because our first appointment on Monday was at 6:30 AM. This time out, we're staying at the Jones Rotary House, which is attached by skyway to MD Anderson, and man... we should have been staying there every time. We had a ton of appointments on Monday, we were there until 7 PM, and it was nice being able to go "home" between some of the appointments and rest instead of having to  sit in uncomfortable waiting rooms all that time.

We had dinner at Goode BBQ, a decent if not great BBQ place on Monday night. As it turned out, that was my last meal for... a while. Tuesday I found out I wasn't allowed to eat anything else before the surgery, and today post-surgery I've been told I won't even get on a liquid diet until the weekend. A little foreknowledge and we probably would have gone for a fancier meal. Ah, well. I did have T&S Seafood dim sum and Deckhand Oyster Bar crawfish etouffee before leaving Austin.

The prep included drinking 48-64 ounces of potassium chloride in about an hour on Tuesday night. I flavored it with lemon-lime, so it was of course delicious. This is in no way sarcastic.But I got through it with the help of Life Savers, applied immediately after each 8 ounce glass, drunk every ten minutes.

The surgery check-in was at 6 AM. So of course, since I'd been napping much of Tuesday thanks to exhaustion from Monday, I couldn't get to sleep. Went to bed around midnight, finally got to sleep sometime after 2 AM. Fortunately, being sleepy for surgery is kind of a bonus.

They checked us in relatively quickly, but then I sat in the waiting room in bed for about two hours before signing the anesthesiologist consent form (the last of many... I agreed to a lot of scary possibilities before this surgery was underway) and was taken in to get an epidural installed. Installed? Is that the right word? Anyway, that was done, they put a mask over my face and that's the last thing I remember...

Until I woke up groggy in the recovery room, in much less pain than I expected, and ater what seemed like a long time, they finally asked if I was ready to see my wife and parents. They came in, said a quick hello and told me that it was 10 PM. Which puts the surgery time, for those keeping track, at roughly 12 hours.

It was a long surgery, but by all accounts a successful one. The surgeon is optimistic that he got all the cancer, the plastic surgeon seems pleased with his work as do the many doctors and nurses who have looked at my ass today, and miraculously, I'm not in much pain. I've even gotten up and walked a couple times, albeit while holding onto the wheely thing that carries my medicine around with me.

I'm not a particularly pretty sight at the moment. I've got drains in my legs, a new colostomy that I get to learn how to use tomorrow (whee!) and various things plugged into me. But I'm feeling relatively OK, and the worst part is now over, and some of the more scary things presented as worst-case scenarios didn't come to pass. Life is going to take a little adjusting to with the side effects of the surgery, but overall I'd call it a success.

Now I'm here in the hospital for another 7-9 days, headed back to Austin after that. They tell me I'll be fully recovered in about two months' time, so hopefully by Christmas. Although I'll start chemo again in November, so I won't be 100% again until some time next year. Maybe in time for my birthday.