Pocket of Joy.

Posted on November 24, 2014


Over the course of these past couple weeks, I’ve slowly improved to become slightly useful… unless you count forming an exact imprint of my body in my brother’s couch cushions as a purpose, then I’ve been hard at work. Encouragingly, each day seems to be driven by little victories; a collection of individual grains of sand that, when combined, will become a beach without any of us realizing it.

I returned to my brother’s house, doubled over and shuffling, with my new colostomy friend stuck just to the left of my belly button, a drain tube emerging from my right pelvis, and handful of pain medication strong enough to kill a pony. I found another poke hole from the surgery hidden under my bag; all four of them scabbed over and healing well. My bum stitches, as my nurses reported, weren’t draining at all and looked good. I can’t feel much of my under-butt yet, but it feels like I have a perma-wedgie.

My first post-surgery stroll... made it to the end of the driveway! You can see both my drain and the bottom of my bag... what a slob!

My first post-surgery stroll… made it to the end of the driveway!

The first few days I continued to exist in the false comfort of medication, though I was anxious to move away from the narcotics. I slept alright; all night and most of the afternoons. I weaned myself off the Dilauded, from two pills every four hours to a single pill every four hours (adding the other if needed), then mixing in a pair of extra strength Tylenol every six hours and then eliminating those in the same fashion. Currently I’m only taking a singular Tylenol before any anticipated moving, e.g., going to the pharmacy or trying to navigate the aisles of the HyVee grocery store.

I was given the homework of recording my drainage output which stabilized around 100-125cc per day. The color of the drainage, which I used as evidence and encouragement of healing, started as a bright crimson color. It progressed to more of a raspberry lemonade hue and eventually a grapefruit juice-esque dirty yellow/pink. Each day, with each color change, I had tangible evidence that I was getting better.

Experiencing my stoma has been an interesting animal. To try and explain it for those unfamiliar: your large intestine (colon) is basically a tube that moves your poo from point A to point B (point B being your rectum) while absorbing water and solidifying your doo-doo. Basically, my surgeon sliced my colon in the middle of the tube and rerouted it to a hole in my stomach. The hole, my stoma, is a circle made of stuff that looks like the inside of your mouth; my nurse was impressed with the final product and called it a ‘rose bud.’ Because digestion is an involuntary process, meaning that we don’t control it- intestines simply do their job of moving poop and absorbing water. Since Stoma is actually just intestine, I can’t control it either. It’s a living, breathing, farting, and pooping thing. It toots occasionally, leaks watery stool into the bag, and once or twice a day it spews out a legitimate, albeit loose, bowel movement. I don’t know when any of this is going to happen aside from some wicked cramping, which I’m told, will go away as swelling goes down and my insides ‘figure out what to do again.’

I have a home-nurse visiting me twice a week to check my vitals (which are fine) and more importantly, tutor me in the art of changing a colostomy bag. This is an entire world unfamiliar to me, as would be to anyone not using a bag, but a terribly complex world to find oneself in. The sheer volume of bag variations is dizzying: one-piece, two-piece, drainable, non-drainable, filtered, non-filter, pre-cut or customizable… and that’s not counting the additional products such as stoma powder, hi tape, adhesive remover, barrier tape, and all the other stuff I don’t even know about yet. Cass did get a maternity belt-essentially a woman’s tube top-for me to hold the bag against me when I venture out in public.

A 'selfie' of my filter-less pouch (and weird new belly button). I wasn't a big fan, it blew up like this all the time.

A ‘selfie’ of my filter-less pouch (and weird new belly button). I wasn’t a big fan, it blew up like this all the time.

The colostomy bags themselves, generally speaking, are a little larger than the size of an open hand with a sticky disc that I cut to the exact size of Stoma. I’m using a drainable pouch now, so the bottom has a narrower opening through which “I can drop the kids off at the pool.” I roll it, or fold it, a few times and press some heavy-duty plastic velcro together to prevent leakage. Since this is a one-piece, I change the entire contraption every three or four days depending on the condition and effectiveness of the sticky wafer. I’m also going to try a two-piece bag, in which the sticky wafer is separate from the bag and the two pieces attach at what looks like the top of a circular Tupperware container-the idea is that you can change bags without ripping the wafer off your skin every time. I also have found that I like the filtered bag; I tried a non-filtered bag already and it almost immediately blew up like a hot air balloon… a very hot air balloon.

To complicate things even more, Stoma will be changing sizes for another couple weeks as my swelling subsides. As you can imagine, I’m in the midst of colostomy bag trial-and-error to find a product that works best for me. Each bag variation I’ve tried works fine, but finding the one I prefer is as frustrating as answering those damn multiple choice questions where all the answers are right, and you need to select the ‘right-est’ one. I’m getting there, though, it’s just a process.

By the time I had my two-week appointment at the hospital, I was shuffling around pretty well, even trying to walk up a set of stairs when I felt up for it. I say ‘shuffle’ because I’m still a bit hunchback because of my stomach pain, and my stride is limited due to the tenderness of my crotch stitches. I took a couple showers by this time, getting more independent with this process (don’t even ask about the debacle that was my first post-surgery shower in the hospital… god, I love my wife). I was looking forward to ridding myself of the leash that was my drainage grenade at the appointment.

Cass had already flown back to Montana and my determination not to impose more than I already was, led me to grab the keys and drive myself to the hospital. It was my first lone voyage since surgery which I needed to do for myself. I apparently answered all the preliminary health questions correctly, and it was decided to remove my drain. The interaction went something like this:

“Let’s go ahead and pull your drain today.”

“So, ah… I bumped this thing last week and it hurt like hell. How painful is this going to be?”

“Well,” dramatic pause to choose her words carefully, “people don’t exactly enjoy this.”

I thought I may have pooped a little bit out my imaginary butt when I heard her say this.

“Okay, why don’t you lay your head back.”

My head didn’t even reach the table before an explosion of pain started deep in my pelvis. I bolted upright just in time to see the end of the foot-long tube come out of my depths. Following its exit, was a four-inch long blood-red slug. The initial searing pain was replaced by a lingering deep burn in which I thought my intestines were torn from their friendly confines and now laid out on the table.

“Oh, [enter a four-letter word of your choice]. What the hell is that thing?”

“Oh that’s just some connective tissue. Looks like you did some healing in there these last two weeks.”

I should have asked more, but I was blinded by the pain. It’s what I image being shot in the stomach feels like. I left the doctor’s office, took the elevator down to the first floor before I found a chair and spent the next fifteen minutes attempting to gather myself before I shuffled out the parking ramp, all while doubled over in pain. I got home safe, in fact, it was a welcomed distraction from recently being gutted and slept the rest of the afternoon… mostly in the fetal position.

I’m fortunate to be getting to a place where I can walk out to the mailbox or even fill the dishwasher. Those may not seem like much, believe me I know, but those little things have allowed me to be in a better headspace to enjoy and appreciate the continued amazingness.

20141115_124100Last Saturday, I planned on watching some football with my old college roommate again. Nick came to the house and walked in with a grin on his face… then Todd, another roommate who lives in Chicago walked in… then Ryan… then Kris… then Chad… Eric… Dorn… Completely without my knowledge, these seven guys traveled significant distances-from Chicago, Sioux Falls, St. Louis, Kansas City- to simply spend the day and let me know they’re supporting and thinking of me in this tough time. The few hours that we spent together, as uneventful as it was compared to the stories we shared, means more than any of those.

Similarly, my good friend from high school drove five hours from Manitowoc to spend a day together, and my aunt and cousin from Milwaukee did the same. All of these people are special to me, and though I haven’t seen them in years, some in nearly a decade, it never seemed like a day had passed.

I recently got a note from some friends in Manitowoc that encouraged me to continue to search for and cherish “pockets of joy” in an otherwise difficult time. I gravitated towards that term, and the more I continue through this journey, I realize those pockets are never far away… as long as you recognize what they look like and choose to accept them.

Plus, it’s kind of funny to think of my colostomy bag as a “pocket of joy.”

Posted in: Cancer