It’s been a long two weeks with some physical blockades preventing me from updating here, but I wanted to get a few things down before they get lost in the morass of my leaky memory.
So as a recap, after several recent recurring attacks of my long-running battle with diverticulitis the GI doctor I see here wanted me go the surgical route. After the usual meetings and phone calls between the oncologist and surgeon the date was chosen, January 18th, and I began preparing. Strictly for the surgery this isn’t anything too onerous, just the usual kind of prep you’d do for a colon-related exam/surgery to clean things out, not eating/drinking after a certain cut-off and in my special case as a cancer patient some antibiotics the night before.
Not entirely sure how a single dose of an antibiotic is supposed to stave off the hungry hordes of bacteria, but not sick yet (knock on wood) so as usual people know more than I do.
The wife drove me down to Rose, they prepped me for surgery, and the next thing I remember I was in a hospital room. The surgeon was unable to do my surgery laparoscopically as he decided to remove not just the original one planned but two sections of my colon and fuse it all together, nor am I 0% body fat guy either which would have helped. Instead I got cut wide open and then sewn up with a suture that goes from my belly button to my side. Seriously, I have staples across my stomach. Pretty creepy. I’d be tempted to make a Nightmare Before Christmas face of it but with my luck it’d cause an infection and kill me, which is one of the more stupid ways to die.
Although kinda funny.
I had a really cool conversation pre-surgery with the anesthesiologist. I had no idea how moment-to-moment their job was, quite frankly. Pretty neat. He said I wouldn’t remember him though so here’s to you, um … shit. Mr. anesthesiologist guy.
Anyhow, at this point recovery consisted of pain management, which we all did a terrible job of since I’ve been in pain every waking moment for a week straight, and getting my bowels working again.
I started on IV Dilaudid but unlike when Sky Ridge was trying to kill me late last year it just wasn’t enough. Unfortunately, even though Rose and Sky Ridge are both HealthOne facilities, I couldn’t find someone willing or able to look into that stay and find out what the dosage was. That’s nonsensical to me, but whatever. Net-net was I could not get them to increase it to a level that worked or was close to the impact it was having at Sky ridge (instant 0% pain, hallucinations, good sleep), so then we switched to Fentanyl. I sat there one of the days with the “fun-button” set to six minutes and it took 36 minutes to get to a dose where I was remotely even feeling it.
In the meantime they were supplementing the different pain meds with some other drug called Toradol, I think? Not sure but it didn’t work for beans either.
So the next thing you have to do is pass gas and get your bowels moving again. The problem with that, and a lot of this, is that it’s really impossible from a pain perspective to bear down in any meaningful way. Hell it’s impossible to do anything in a meaningful way except not move — it’s incredible how much we do involves those core stomach muscles, some of which I believe were cut during my surgery (intentionally!). Either way you’re constantly worried about tearing something open, which leads to fun things like death, colostomy bags, death AND colostomy bags, etc. Eventually things started kind of working, although it all hurts so bad I’m still not sure where I’m at with it. I’m avoiding fiber and spicy stuff like the 5th, 6th and 7th plagues of Egypt though.
I did notice that during this process I had opened a page in my iPhone browser with euphemisms for pooping, hence the title of this blog entry. It was a tie between that and “downloading some brownware” if anyone was curious.
My folks visited pretty much every day. I’ll admit that makes me a bit nervous because historically things like that have been used against me with them, but it was nice for what it’s worth. My buddy Derek came to hang out, which was awesome. My daughter and wife only came once and nobody else, which kind of saddened me. Don’t really feel like getting into that right now.
I was released Monday (23rd). The only real rest I got in the hospital was the last night I was there when I got the nurse assigned to me to get me a Xanax from the resident, which was good although I was zonked out when the surgeon visited and didn’t get to ask some questions I had. No worries, however, as I meet with him this Friday. It’s just not possible to rest in hospitals, oddly enough. Too many people constantly coming in to check on you, cables tangled, no privacy, etc. Now I’m home resting, which is nice even with my daughter sick with yet another respiratory thing (c’mon IViG and hand washing!).
A few omnibus thoughts to this whole ordeal in no particular order of logic or pithy-ness:
- If the longest IV tube you have is 3′ you are bad, and you should feel bad. This is not a knock at the nurses at all, who were universally wonderful — not just saying that, they rocked. But it’s retarded to me to not have in stock longer IV tubes or extensions available when you may be attaching patients to them for multiple days. I had to untangle myself every single time I got up, which was frequently, and I managed to pull my IV all the way out once. It’s cool if I’m comatose, but if you want me walking 4x a day and I have to do this weird log roll thing to get out of bed without falling or ripping everything open? Not so much.
- Along those lines, the tape-on Pulse Ox finger thingies are crap and get ruined every time you wash your hands. Just use the grey rubber ones that you can jam right back on. Not only are those less wasteful but if I need to type something I can move fingers.
- Why do the nurse call buttons in hospital beds never work, so I’m forced to have some gigantic remote on a cable constantly tangling with everything to manage as well?
- If you are going to charge me (well, my insurance company) a billion dollars a day, could you please not stock the courtesy fridge with the worst shit on the planet? Seriously, look at the ingredient list of the popsickles. I already have cancer, I’m not looking to buy tickets to the sequel.
- Unless Led Zeppelin just finished partying in my room (and even then it’s iffy), if you wake me up to empty an empty trashcan during the first time I’ve been able to sleep in a day while cheerfully yelling “HOUSEKEEPING!!!!!” I will curse you out until you leave my room in tears. I’m sorry if this causes you PTSD. Actually I’m not, fuck you. Seriously.
- If you are dealing with an oncology patient, the last thing we ever want to hear unless we’re intentionally trying to game the conversation this direction is “let me check with the resident.” Look I totally get what residents are and what they do. That being said, I have a really rare cancer that even doctors with a lot of skill and experience can (and have several times in my case) blow diagnosis because of. Check with the resident if you need to know how to make my bed. Check with my oncologist or surgeon for anything serious, OK? You don’t have the experience to make decisions related to me. Sorry. Again I get it, but I’ve had some dangerously stupid things happen in hospitals due to residents and I just don’t have the body and systems to withstand their screw-ups anymore.
I know that all sounds negative, which is a combination of my sense of humor and being in constant pain for a week. I’m in a decent mood, I guess, all things considered, although it was pretty dark before and during this all. I skipped writing it before because I just didn’t have the words, and during because I couldn’t type more than two words with all the things going on and the pulseox on my finger making typing really frustrating. But there’s something I’ve been struggling with that I’m not sure is going away as it deals with this all in general and not just the surgery.
I didn’t think I was making it through this. That’s a pretty common thing to think, I suppose.
Not so common perhaps is I was kind of hoping I wouldn’t.
I know that sounds “bad,” in a lot of contexts. I’m just so tired, man. SOUL tired. This is more than just the daily “fatigue,” a dainty word for the 100% fucking exhaustion that comes with this cancer and the chemo. I’m talking tired of doctors and appointments and stress and chemotherapies and shitty marriages and whiners on Facebook and jobs I hate and cancer and every day feeling like a worse version of the day before and infusion centers and cancer clinics and being poked with needles and the looks you get as an outed cancer victim and watching important friendships drift away and not having cats and having a disease dictate the quality level of me being a father and this shit never fucking ending and drugs ballooning my weight so my self-image is so bad I don’t look in mirrors anymore and the effort it takes to put new bricks in the emotional wall and, and … and.
I mean it never stops, you know? Even more amusing, in a dark way, are the 1-2 folks who bothered telling me some version of “Jesus is just giving you what you can handle,” etc. Really? REALLY?
Not even going there today.
I know this is all a self-pity spiral and best to avoid. Not sure how to, though. I wasn’t stoked to do this surgery because it was risky and the point of living in this ridiculous way now is to stay alive for Ariana. Who won’t appreciate any of it until long after I’m gone, if ever. It’s just hard. And staring at those ceiling tiles in yet another hospital room, again, it just makes you wonder at which point you get to just stop fighting. Am I supposed to be excited now to start yet another new chemotherapy? I’m sure this one will work, right? Another clinical trial? I feel trapped into living. That’s a REALLY weird situation to find yourself in.
More miles on the car, on the body, on the mind and heart. How long does this have to continue?
I don’t wanna end this negatively, though, just not in the mood. So wiping away the tears I will close with this instead, a humble thank you to the nurses who took care of me on the 6th floor of Rose Medical from the 18th to the 23rd. I have never had a stay in any hospital where ALL of the nurses were so friendly, caring and treated it like more than a job, which a patient is so nice to experience. I hope the universe thanks you in some karmic rebalancing far more powerful than what I am capable of with just a simple “thanks.” But thanks all the same.