Craig’s Colorectal Cancer Crisis: Part I

My attempt at adding some sex appeal to radiation treatments. I think I was successful.

On May 11th, 2022 a nurse woke me up from my anesthesia-induced sleep, waited as I scrambled to regain my wits, and then told me that the colonoscopy had found a tumor. I started to cry. She assured me it could be benign. I knew the chances of that were slim. Five days later, on May 16th, my gastroenterologist called me to tell me that my biopsy results were what we had feared. I had cancer. I cried some more.

What had brought me to that point was months of consistent blood in my stool. It started in late December of 2021 and, at first, I didn’t think much of it. Rectal bleeding is common and often clears up on its own. Wasn’t the first time in my life it had happened. Except, this time, the bleeding only got worse with time. In March, 2022, I was finally able to see my primary care doctor. The initial thought was hemorrhoids. However, my doctor recommended a colonoscopy just in case. After another month, I had a consultation with the gastroenterologist and was given a choice: a 30-day prescription for suppositories or a colonoscopy. I figured if I had to shove something up my ass, I’d prefer for it to be for one day and know exactly what was going on rather than 30 and still being unsure. It was the right choice.

There’s a strange type of liminal space after receiving a diagnosis, but before getting a prognosis. I had no idea what stage the cancer was, what my chances of survival were, or anything else. In a situation like that, how can you not expect the worst? I thought about my ambitions. I had just finished the first draft of a novel I was excited about and now knew the chances of my finishing and publishing it were slim. I had the entire year planned out with projects to further my writing and filmmaking ambitions. I never thought 35 would be too old to pursue your passions. I wasn’t filled with regret, my life is truly too good for that, but there was a disappointment and frustration that I might not be able to accomplish my goals. That said, as my feelings evolved, I realized that there were plenty of other things I had accomplished.

I thought of my then 15-month old son, Elijah, and my wife, Hanh, and how I might take care of them after I was gone. I wrote letters to Elijah and documented my favorite poems and songs in a notebook. I made Hanh the beneficiary on everything I own. I did what I could to continue providing.

And that’s when I started to realize that, if we have any purpose at all in such a cold and random Universe, they were it. I’ve come to believe that there are two types of people in this world: 1) doers and 2) facilitators. Doers are those people that make tangible change in the world. They accomplish great things and affect lives positively. But, they can’t do it alone. They need facilitators. Those people that support them while they’re in school, or do the chores while they’re running events or working, or myriad other things that keep our lives together even when time is tight.

Hanh is a doer. She’s out there in the world getting degrees, changing lives, and being a leader. My purpose, if I ever had one, was to help her get to that point. I did that. We also had Elijah, who I know is going to accomplish great things. He’s already shown so much potential, is so smart and has so much love in his heart, that it’s inevitable. If my purpose was to support Hanh as she finished school and started her career and to bring Elijah into the world, then mission accomplished. My life was worthwhile. That change in thinking helped me cope a bit easier while I lived in that liminal space.

Once we knew I had cancer things moved more quickly. I consulted with multiple oncologists, radiologists, and surgeons from Crozer-Keystone and Fox Chase. I wasn’t eligible for any experimental or novel procedures, so the process for fighting the cancer was the same between both institutions. I chose Crozer-Keystone because their facilities were much closer to where I lived. In this time, we learned that I had Stage III and that my prognosis was good. I was young, relatively healthy, and the cancer hadn’t spread. All reasons for optimism.

I continued to work. My employer has been extremely supportive throughout this process. They’ve given me time off as needed, helped me to navigate our fucked up healthcare and insurance system, and my coworkers have sent me gifts and professed their support. I’m extremely grateful to have that. Many people don’t.

I went down to part-time work in July, when I started radiation treatments. Every day I stripped naked from the waist down, put on a gown, then lay facedown on a giant machine that shot lasers at my bare ass. After each session I would feel nauseous and tired. I would go home, try to eat, and rest. It was all I could do in the latter half of the day, until I had to pick Elijah up from daycare. I got used to the routine, but it was also exhausting. By the end of the process, I had permanently lost most of my pubic hair but was assured the radiation missed my testes, so I hadn’t lost the possibility of having another child in the future. Unfortunately, surgery may have taken that choice from us.

Radiation ended on August 15th, my wife’s birthday. When we looked at the latest scans, it looked as if the tumor had shrunk by about 2/3rds. That part of the treatment was successful.

I met with my oncologist and told him I wanted at least two weeks off before we started chemo. He agreed, and in hindsight I should have done three. Two wasn’t enough. In that time I went in for my first surgery–port placement. The port is how the chemo is delivered to your body. It’s a small, circular plastic piece that is implanted just under your collarbone. A catheter connected to the port is attached to a vein near your heart. I’m still not used to it. Every time my hand brushes by it when I scratch my chest or wash myself in the shower I shiver a bit.

Chemotherapy began on August 30th. I should have had the port installed earlier, as I was still bruised and healing during that first treatment, which led to a lot of pain as my port was accessed. Little did I know, the pain felt on that day was nothing compared to what I’d be in for a few months later.

The hair on my body has been a major problem when accessing my port or doing anything, really.

For three out of every 14 days (in other words, three days on and 11 days off), I would be poisoned with the hope that the chemo would kill the cancer before it killed me. There were days, particularly the days following the chemo treatment, where I wasn’t sure we would win that race. The fatigue was all-consuming. I often felt sick. This was a difficult time. I did my best to carry on normally, unable to face the fact that things were no longer normal. I wanted so badly to be better already, to just return to the way life was before the cancer, but the journey was so long. As we neared the end of my six treatments, my white blood cell counts kept dropping. I was given a shot to stimulate their production. Part of me hoped that my body wouldn’t be able to keep up and we would end this part of treatment early. It’s a weird compulsion, I know, but by this point I was so tired of treatments and needles and drugs. I wanted it to be over.

Chemo finally ended on November 10th, nearly five months to the day from when we initially found the tumor. By the end, I was glad to be past chemo and sincerely thought that would be the most difficult part of the process. Through chemo I had developed two blood clots, one in my leg and one in my lung, that put me on blood thinners. Otherwise, to steal a phrase from every mid-2000s pop punk band, I was just sick and tired of being sick and tired.

There were more tests and imaging to do, but I had a brief respite before going to surgery. I increased my hours at work, spent time with my family, and did my best to relax. In my head, I figured surgery would be the easiest part of this whole process. My understanding was that after surgery I’d be in the hospital for three to five days, on a lifting restriction for two weeks, and then from there I would be in the clear. What I didn’t expect was the sort of complications that would keep me in great pain and discomfort for nearly a month.

Behind the Vignette: YOU DON’T DRINK?

I stopped drinking to get drunk when I was 27. I had started drinking when I was around 16, mostly things like Mike’s Hard Lemonade in a friend’s camper that sat in his backyard. Over time, particularly once my friends and I turned 21, the frequency and intensity of my drinking increased. I’ve never been an alcoholic (at least in the sense that I’ve never felt compelled to drink to excess, or like it was outside of my control), but for a long time we were having parties or going to bars every weekend where we would drink to get drunk, whatever that meant.

In theory, there wasn’t anything wrong with it. We did some stupid things, made lots of mistakes (I somehow remember one such incident when, after playing in a beer pong tournament downtown, I found myself driving on the thruway with no idea how I got there), but by the grace of God never hurt ourselves or anyone else.

What changed for me was a sense of losing myself. Getting further away from who I wanted to be. It was some holiday weekend (warm enough to be in a pool at a friend’s apartment complex, and so I’ve always thought it was Fourth of July, but that timeline doesn’t quite line up, so it must have been later in the summer or near Labor Day) and I got pretty sloshed. No big deal, I made it home okay (on a bike this time) and slept it off.

The next morning, though, I had to go to work. I felt so shitty that I ended up having to leave sick after maybe a quarter of the workday. I realized then that, in addition to disliking the person I am when I’m drunk, that I wasn’t being responsible and that, eventually, it would badly hurt me. At that point my body couldn’t rebound from being hungover like it had when I was younger, and so the circumstances aligned in such a way that I was able to give it up. I’ve been drunk a few times since then, but never memory-loss drunk and not with anyone aside from my wife or family.

I don’t miss it. But what I began to notice when going to parties, or hanging out at a bar, was some confusion on people’s faces when I tell them I don’t want a drink. Alcohol is such a common and accepted vice in our culture that it’s hard for people to understand those that don’t want it.

I imagine it’s even worse for recovering alcoholics, especially if they’re still friends with other alcoholics.

That was the genesis for this story. To explore that confusion and those feelings of someone that has changed coming up against those who haven’t. It’s a bit exaggerated, but I hope it’s honest, or reaches for something close to “Truth.” And I hope that if you’re someone who doesn’t understand when people turn down alcohol, that this story sheds a little light on why that might be, and why that’s okay.

Behind the Vignette: THE PACE OF CHANGE

Click the picture above to read the story.

I lived in Buffalo, NY for the first 24 years, 10 months of my life. I left just a tad over ten years ago. That first year of being away from home I visited often. I don’t remember how often, exactly, but probably more than five times and less than ten. Nowadays, I might go up once or twice. My visits now, as infrequent as they are, remind me of everything that’s changed since I left.

Obviously, in ten years there have been a lot of changes to the physical landscape. Businesses change names or close completely. The waterfront is completely different than when I left. New restaurants and public areas have cropped up. My high school is no longer in the same building (this actually happened before I left, but still).

But the people have changed, too. I’m different. My friends are different. My family is different. We can slide back into our old dynamics, fall into the old routines, but if you take a step back for more than a second it’s easy to see the changes in everyone.

So, in a sense, I think that our relationships are like the cities we live in. They change slowly, little by little, and it’s not always noticeable unless you take the time to notice it. This story is about that feeling of driving through someplace that should be familiar, and then you realize it’s not what you remember. Somewhere along the way, without your noticing, it changed into something you don’t recognize.

What you do with that realization only you can know. I don’t think the ending of this story is ambiguous, in fact I think the Universe is yelling at Geoff and Zelda something obvious to everyone but them, but it is unclear what they’ll do with the information. Most likely, they’ll ignore it and continue on like they always have. But maybe, the nudge is what will help them realize that in order to come to recognize the external changes pushing down on you, you also have to recognize the internal changes that can help you come to terms with it.

35

My birthday cake is officially a fire hazard.

Today is my 35th birthday. 35 is the last major milestone for a while (I can run for President! Yay?), but it’s also a point in life where things are either actively changing, or have changed enough to reflect on. I believe that we all live several lives over the course of our 80-some-odd years (or more! Hopefully!) on the planet, and by my math I’m somewhere around my fourth.

Let’s talk about them. And, for funsies, let’s call them “Ages.”

THE AGE OF CJ

The face of a martial arts master.

Childhood is weird. Memory is imperfect on our best days, and as we get further removed from childhood our recollection of it becomes a combination of unverifiable events and fantasy.

My childhood feels like staring at vague figures doing vague things in a thick fog. I remember being a generally happy child. I ran around outside, played with my friends, watched Saturday morning cartoons, played Nintendo upon waking up, and had an active imagination. That all sounds pretty good.

In reality, my childhood was filled anxiety and anger. I had chronic stomach pains that were never diagnosed, but in hindsight probably had to do with anxiety. My parents divorced when I was 13, and the years leading up to that were rough. Lots of arguments, snide comments, and a few physical altercations (none involving me).

To me, though, that was normal-adjacent. I had my coping mechanisms (wearing ear plugs and going to bed while it was still light out, for one) and so I didn’t think that the environment I was in might be unhealthy. Now that I have a son, though, for whom I want to provide an environment that supports his development in the smoothest way I can manage, I can see in what ways my childhood fell short. Some of that is because of my parents and their flaws, and some of it is because of circumstances they had no control over. They didn’t ask to be poor. My family didn’t ask to deal with mental and physical illness. We all had to deal with those things, and I think that contributed to a lot of the negative feelings in the house.

And so I’m left with frustration at all the things I never got but also am awestruck for what I had, given the circumstances. Sure, I only had two pairs of pants for an entire school year, but I never went hungry either–even if the food was often out of a box. My parents managed to pay for and take me to Tae Kwon Do three days per week, and then bought me equipment to play roller hockey after that. When you’re a kid you don’t understand that those types of expenses come with sacrifice.

We begin the long journey of discovering ourselves as children. My first identity was an angry, impatient child. After starting Tae Kwon Do I learned patience and how to direct my emotions into something productive. At home and at school I learned the value of being helpful to protect yourself. And I learned how to use sarcasm to deflect, and humor to engage. These traits have stayed with me, for better or worse.

Childhood is also when we begin to decide on who we want to be. I discovered reading and writing as a boy. I met my first best friend, who introduced me to hockey. I got a VHS-C camera from my grandfather and made videos with my friends.

I can recognize these things now, only because of how far away they seem, and how far I’ve come away from them.

THE AGE OF SIEGE

Puberty hit me like a truck hits a raccoon. Messily.

Many people say your teenage years are the best of your life. They’re absolutely wrong. Unless you stop maturing or run into tragedy as you get older, your teenage years won’t be your best years. However, they will be the most memorable.

My feeling is that this is because from the time puberty kicks in until you graduate college (or later) you’re a raw nerve and you feel every experience to maximum effect. Friendships are closer. Parties more fun. Sports harder and more exciting. Relationships deeper and more intense. To be a teenager is to truly experience everything in all its complicated glory for the first time.

My world expanded. I left my street for the first time and started to wander the neighborhood with new friends. I spent a lot of time on AIM, in chatrooms, and on Pogo. I went to overnight roller skating to meet a girl I only knew online. Later, I dated a girl from the suburbs, which was my first basic lesson in culture shock.

These new experiences also includes loss. As I moved into teenagedom, I let go of the friends I had made on my street (including my first best friend–the one that introduced me to hockey) in favor of new friends. My parents divorced. My sister joined the Army and left home. Pets died. I didn’t know how to deal with it.

I rebelled, in my own way. One year in high school I put my hair up in what I deemed “spider-legs” (basically, a bunch of tiny ponytails all over my head) and used colored gel to dye the tips green. I drank Mike’s Hard with my friends, when we could get it. Stayed out until 2 or 3 in the morning sometimes. Once, I ran into a friend’s dad outside while walking home late at night. He stopped me and asked if I was high. I’ve never been high, so the answer was no. He didn’t believe me. Most people didn’t. A consequence of living in a house where second hand smoke rolled out of the door like fog in a horror movie.

I also went to youth groups, despite not being religious. It was a place to hang out with kids my age, and if we went to the one with my friend’s older brother he would take us to the dollar show afterward (where I first saw MINORITY REPORT), and then we would help him clean car dealerships. Cleaning those dealerships made me think I wanted to work in an office. It seemed so fancy and stable.

I had my first heartbreaks (and did some of my own heartbreaking, as hard as that may be to believe if you’re going off the above picture), and poured that emotion into poetry, short stories, and screenplays. In those, I began to learn what it was I wanted in a relationship. Eventually, that rocky road would lead me to my wife.

But not quite yet.

THE AGE OF CRAIG

Henley’s for life.

The time after high school is insane. I went a bit insane with it.

I moved out when I was 19, vowing to never go back. Technically, that was true, although I have lived with my sister on two separate occasions. My vow wasn’t because my life was bad at home, although I certainly believed that at the time. First was dorming for a semester, which was pointless. I was stuck in a room with three other guys, one of whom slept through his alarm (the chorus to Thrice’s “Artist in the Ambulance” on repeat) every morning. On weekends I worked and generally spent my time at home, anyway.

After the dorm, I got an apartment with a high school friend. A family friend was our landlord, so we got free internet and cable. This only turned awkward once–when my landlord got a court summons for downloading porn to his IP Address, which was actually my roommates doing. Luckily, some research revealed there was nothing to worry about. My roommate and I got along really well (at least from my perspective–I’m sure there were lots of things I did to piss him off), which I am eternally grateful for.

Those four years were some of the poorest, most exciting of my life. Parties seemed to happen every weekend. I had friends in the art scene, and was able to score comp tickets to plenty of theater and music shows. My roommate was into gaming, so we played hours and hours of Halo, Gears of War, and Rock Band.

I was active everywhere. I wanted to get to know my city, and so I explored whenever I could. On my own, driving the ’84 Firebird my father had gifted me (and I then proceeded to neglect) around the city. Working in the independent film scene and getting to step foot in places most people rarely think of, like the water pumping station on Lake Erie. My work on independent film culminated in my writing and being Assistant Director on GRANTED, which then led me to reconsider all my dreams of being a filmmaker.

My friends and I played lots of sports. Dodgeball (2008 WNY Dodgeball champs!), volleyball, some hockey, and working out at the gym. We had to stay active, considering how much we drank and ate out.

This time was when I began having trouble holding down a job. Not out of incompetence (not always, anyway, although I was fired from being a telemarketer after two days), but in trying to find something that paid well and I truly enjoyed. I did Burger King for three years, two separate stints of machining, landscaping that didn’t end well, teaching an afterschool science program (where I would eventually meet my wife), and then working as an usher at the Buffalo Museum of Science. I also made wooden plugs on a drill press in my father’s basement for a penny per plug. If I worked quickly, and the wood cooperated and didn’t break apart of clog my drill bit (fat chance), I might make 200 plugs in an hour. I hated it.

Creatively, I wrote a lot. Mostly short stories and screenplays. I joined several writer’s groups that met in restaurants or coffee shops. I tried to direct my own short film, but royally fucked it up and gave up. I think I disappointed people.

There were also girls. Each one a lesson learned about who I am and what I need from a relationship. None were bad relationships, not really. Certainly not from my perspective. A few of those girlfriends might disagree, and I wouldn’t blame them. Most of my deepest shames are from how I interacted with women at this point in my life. My own insecurities made me less than they deserved.

Until Hanh, anyway.

THE AGE OF MR. GUSMANN

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Married with children.

Growing into a responsible adult is exhausting.

Now that myself and most of my friends are marrying and having kids, it sometimes feels like we’re transitioning from being participants in life to being observers of it. I spend way more time watching my kid grow than I do any growing myself. And I think that’s right. I think that’s how it should be.

Which isn’t to say I’m dead, or that I’m not longer capable of growth or dreams or whatever. My priorities have changed, though. Where I choose to focus my energies has changed. That change is because I’ve finally figured some shit out.

Now that I’m older, I have a lot of things that I didn’t in those other eras. Stability, a sense of my strengths and weaknesses, money. The only thing I don’t have much more of now than then is time. But that’s because my life is so damn full. It’s bursting with things I never expected to have. Love, for one thing.

I often wonder what 15 year old Siege or 25 year old Craig would think of 35 year old Mr. Gusmann. I think they’d have a lot of questions about why I’m not a famous director or screenwriter, but ultimately they’d be ecstatic with where I am. It’s a helpful gauge when I’m feeling down, sometimes. On my worst days, when I hate my dayjob and Elijah won’t let me sit down for five minutes, and the house needs to be cleaned, and God damnit something broke, and the cat’s sneezing, and fuck what now–I can still look around and appreciate how all of these little annoyances are a direct result of my filling my life with people and things I love.

For me, each age has been better than the last. I’m determined to make sure that holds true, which means the beginning of this new era should be the best yet.

Behind the Vignette: Tough Guy

Click the picture to read the story before learning about its inspiration.

One day a while back I was standing in line at the post office and there was a ratty looking man standing off to the side, just kind of watching everything. You know the type–dark hoodie, thin from years of use; dirty jeans; scruff; carried himself like he was an offhand remark from fight or flight.

While I was watching him I thought, “What if this dude’s here to rob them? What would I do?”

My mind ran off on an elaborate fantasy about how I’d stop him when, quite suddenly, my rational mind kicked in and said, You wouldn’t do shit except for what he told you to do. You’d die if you tried to play hero. Anyway, this dude is just here to mail something. Dickhead.

And in that, this story was born.

I think most men have hero fantasies. Chalk it up to a lifetime of seeing westerns, superhero movies, and other lone wolf action movies. Or maybe it’s a symptom of toxic masculinity. Probably a bit of both, feeding into one another like an ouroboros of assholes.

There are good examples of this phenomenon in celebrity news! Remember when Mark Wahlburg said that if he were on Flight 93 he would have stopped 9/11? That’s the kind of thinking that gets people killed.

I wanted to write about that. Take the piss out of it a bit. It’s one of my first attempts at writing actual comedy, and I think it’s pretty good.

Maybe I’ll try it again sometime (the comedy, not the violent fantasies against strangers).

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