In October, 2023 Wired published a piece from the author Vauhini Vara titled, “Confessions of a Viral AI Writer.” In the essay, Vara discusses her experiments with AI, how it’s generated content has gotten purposefully worse over time, and dives into the different perspectives on AI’s use.
Specifically, she cites conversations with authors that use AI as a tool to facilitate their writing process. One author and literary critic, Adam Dalva, uses DALL-E to generate scenes that he’s imagining, then uses that as a reference for his writing. Another author, Jenny Xie, uses AI to generate parts of her narrative. Outside of Vara’s examples, I’ve heard of authors using AI to write the parts they struggle with or, in some cases, just don’t like writing. Descriptions of scenery, descriptions of people–mostly description that is necessary to paint a scene for a reader but is only ever tangentially related to the story.
Vara goes on to discuss Roland Barthes’ essay, “The Death of the Author” within the context of AI. The essay discusses the oftentimes vast difference in reader interpretation vs. author intent, and argues that the reader interpretation is more important. If this is true, then something like ChatGPT can generate something tailored to a specific reader, rendering an author useless at best, unnecessary at worse. Some people, like a mother Vara references in the essay, have already taken that step:
“But what if I, the writer, don’t matter? I joined a Slack channel for people using Sudowrite and scrolled through the comments. One caught my eye, posted by a mother who didn’t like the bookstore options for stories to read to her little boy. She was using the product to compose her own adventure tale for him. Maybe, I realized, these products that are supposedly built for writers will actually be of more interest to readers.”
– Vauhini Vara, “Confessions of a Viral AI Writer”
Vara touches on several other perspectives in her essay and ultimately concludes that AI lacks the human touch that separates art from product. This made me think of the tens of thousands of words I’ve read about AI over the past two years, and how few of them have talked about why readers read, and why writers write.
There are plenty of dangers with AI–the loss of creative opportunities for genuine artists, the commercialization of art, rich tech bros becoming richer off of stolen work and poor product, the degradation of literature and, ultimately, language, etc.–but one I haven’t seen grappled with is the loss of human-to-human connection. The reason I read and write is to connect with people. After language was invented, storytelling was one of the first things people did. What does it mean for our connections across time and distance if everything we read is partially or even fully a machine construct made up of recycled material?
The value of storytelling is in its perspective (something that Vara discusses in her essay), which, by its nature, is something AI cannot have regardless of how much data it is trained on. We read stories (or essays, or newspaper articles, or memoirs, or histories, or whatever) to immerse ourselves in a different perspective. Writing has always connected us. It’s how we know what it was like living in 1500s Spain. It’s how we know, in a very real, detailed way, what it was like to be a slave. It’s how we exchange information, ideas, and experiences. On more than one occasion writing has changed the world. These things happened because the person behind the writing synthesized their perspective, their experience, their morals, their humanity onto a page for others to pick up and see themselves in.
If authors start heavily using AI to generate their content, or if readers use AI to create individually tailored stories for themselves, eventually the only content AI will have to continuously train itself will be content generated by other AIs. This could realize and actual version of the dead internet. The experiences and perspectives that we’ll read in AI-generated literature will no longer reflect who we are. It may, at best, reflect who we were. But even that is probably a stretch.
I’m not one of those people that thinks AI has no place in authorial pursuits. I think it’s a tool that can be used well or can be used poorly. What worries me is the all or nothing thinking from the consumer, and the replacement mindset of the tech bros. My sole reason for reading and writing is to connect with other people. To learn from them, to understand them better, to feel like I’m not so alone.
I don’t want to see a future where that connection is lost.
I think there is a perception, or at least I’ve always had the perception, that life gets easier as you get older. Maybe it’s because you gain some amount of freedom you hadn’t experienced before. Maybe you get a stable job and no longer have to worry about money (as much). You get married and have a kid (or a few) and aren’t as lonely. Or any number of possible things that can improve as time marches on.
What I’ve found over the course of my 37 years is that life is always hard for most people, most of the time. It just becomes hard in different ways. While owning a home and having a child and maintaining a marriage and having disposable income are all great things, it’s also really hard to maintain a home and raise a child and share your life and be responsible with your money. We work so goddamned hard when we’re young to lift ourselves up, earn the responsibilities that we’re told make us successful adults, but then need to learn how to shoulder the burden of those responsibilities. The margin of error shrinks with each one. It’s terrifying.
Although I’ve not quite reached middle age (all being well), I have reached a point in my life where I’m beginning to lose more than I gain. Eight years ago, I lost my grandfather. A few months after my son was born, I lost my oldest friend. This past December, I lost my mother-in-law. Going forward, I’ll likely attend more funerals than weddings. I know all too well that Death hovers near all of us, all the time, and will reach for you at random.
I say all of this only to acknowledge that life is hard. For most of us, most of the time, it’s always been hard and will continue to be hard.
And that’s okay. Because we level up as the difficulty rises. Sure, sometimes we fail, or we retreat. But most of the time we learn to manage it. We become wiser. Get stronger. Understand ourselves better. There is value in that as part of what it means to get older and to live a life well lived.
For a brief time I wasn’t sure I’d see 36, let alone 37. So, even though things are hard right now, even though most days I feel like I’m barely treading water just balancing my day-to-day responsibilities (to say nothing of my ambitions and dreams, which are largely ignored nowadays), I’m grateful to feel it at all. Feeling like I’m about to crumble under the weight of my responsibilities means I’ve built a full life. It means I’ve achieved things and now must maintain them. Feeling this way means that I am here, experiencing all that life can throw at me and I’m making it through.
After COVID, and having a child, and getting cancer, and losing people I love, I’ve realized that I am resilient. Resilient and persistent.
So are you.
Remember that as things get harder, and they will always get harder. We are resilient and persistent, and life is worthwhile because it is hard.
I had lost my ass. Not in the colloquial sense, like when a chronic gambler loses at the casino. I mean in a literal, inside and out sense.
The rectal resection surgery took most of my rectum. How much, I can’t say exactly, but when I asked my surgeon he said, “Most of it.” The reason they took so much was because no one was sure if the cancer had spread to the lymph nodes surrounding the tumor, so they took as much rectum as they could without my losing it completely.
To add insult to injury, because I was in the hospital with the ileus for so long and unable to eat, I lost 40lbs in just about four weeks. The weight loss stole my best feature–my perky butt. I was aghast when I went to shower, looked in the mirror, and saw that I now had a flat ass. It really drove home just how much cancer was going to take from me. Unfortunately, over the coming months this wouldn’t be the worst of my ass-related trauma.
Losing that much weight in such a short period of time has significant repercussions. Stupidly, when I was finally allowed to go home on January 14th, I thought that as long as my ileostomy continued working I would recover and start getting back to normal within a few days. Nope.
The weight loss had weakened me severely and exacerbated other issues, like the neuropathy in my left leg and both feet. For the first week or so I had very little energy and spent most of my time in bed. Stairs were a challenge, and I was often left winded just climbing the 13 steps between our first and second floors. When I tried to help with chores, like dishes, I needed to take frequent breaks because of fatigue and pain in my back and legs. Even showering was difficult.
Taking care of my son in a way that included more than sitting on the couch and watching him play or, if he felt like interacting with me, reading to him was a non-starter. I was home, but in some ways I still wasn’t able to be with him like any parent would want.
Elijah took some time to adjust to my return. While he’s always preferred Hanh in certain ways–kid is a mama’s boy–he had understandably come to rely on her for everything over the month I was gone. I wasn’t a stranger to him, not exactly, but there was definitely some distance there that was tough to acknowledge. Bedtime was especially difficult. I couldn’t help because I couldn’t lift him, and he became so reliant on Hanh helping him to sleep that if she left his room before he was in a deep sleep he would throw a tantrum. Basically, we had entered sleep training all over again.
Gradually I was able to increase my movement, then start helping with chores and child care, until my strength and energy returned to the point where it wasn’t a tragedy if I was unable to get a two-hour nap in during the day. After a month or so, maybe around mid-February, I generally felt pretty good day-to-day. The neuropathy hadn’t gone away (it never will), but I was able to do chores and even some light exercising with an elliptical and exercise bands.
I was also able to take care of my kid again. Honestly, the best exercise I have available is carrying around my 30-pound son. As my legs got stronger, the pain I felt in my left leg dissipated. It’s still there if I focus on it, but I rarely notice it on most days. Before the reverse ileostomy I was able to spend entire days with my son on my own, something that was unthinkable in January.
Caring for and adjusting to my ileostomy was a more difficult challenge. I’ll write a more detailed post about what it’s like living with an ileostomy somewhere down the line. For now, I’ll just say that it took a while for me to adjust. Not only seeing a section of my small intestine protruding from my abdomen, but learning how to manage my output. Diet is tricky with a stoma, especially if you want to live an active lifestyle and not be tied to a bathroom all the time. Eventually I learned enough about my stoma that I could sit through John Wick 4 without bursting a bag. Aside from my anxiety over the reversal surgery, there was never a time when I wasn’t counting down the days until the ileostomy was gone.
And that brings me to the story of what I came to call “Butt Stuff March.” It started with a late February check-in with my surgeon. After the health issues I’ve experienced for the past year, I’ve become a firm believer in radical transparency. If something seems weird, I’m going to mention it. Even if something doesn’t seem weird, I want my physicians to have a full understanding of what’s going on with my body just in case something is wrong that I wouldn’t know to recognize. It was with this belief in mind that I told my surgeon I was still having some bloody bowel movements.
I use the term “bowel movement” loosely, here. With an ileostomy you technically don’t have bowel movements. Food can’t make it that far into your bowels for any movements to take place. That said, your bowel does still produce mucus that needs to be flushed. In that sense, you still have to sit on the toilet and move things from time to time. In my case, sometimes I was only moving blood.
My surgeon was concerned about this. Early on it was expected that I would have blood sloshing around in my colon because of the surgery, but that should have been gone by now. He worried I had somehow developed a leak in my anastomosis. If we reversed the ostomy while I had a leak, it could kill me. At the very least I would get very sick. “I’m going to do a digital exam,” he said. I’ll spare you the details, but I did text my wife afterward to say 0/10, would not recommend.
The digital exam didn’t result in anything conclusive, which was actually encouraging because if there was something conclusive it would have meant something was terribly wrong. My surgeon outlined a plan for the next few weeks. A sigmoidoscopy with a stiff camera to see if anything was wrong up there, and then a barium enema that would show if there were any leaks.
The following Monday I had the sigmoidoscopy. I was put under general ansthesia and nothing seemed amiss, but I was quite sore afterward. The Monday after that, March 13th, was the barium enema. You aren’t given anything for enemas. You just go in, they shove a tube up your ass, pump your colon full of fluid, take x-rays, then send you home. I assumed that it would be easier than the digital exam. I was wrong.
I laid on a hard, cold table on my left side, with my right leg pulled up toward my chest. Before they started the procedure I caught a glimpse of the enema catheter and was surprised at its size. In hindsight, perhaps this was a mistake. It probably made me tense up. The nurse started the insertion and I was in immediate discomfort. The doctor, bless his heart, tried to help me relax by talking me through it, but I was in genuine pain. The nurse struggled to insert the catheter, even asking if I’d like to do it (I assume because sometimes people either have some experience doing at-home enemas or at least know their own bodies well enough to navigate the insertion process–at the time I had neither). I declined.
After an excruciating minute or so they gave up and said they were going to try a foley catheter, which is much smaller. The problem we faced was that with a small catheter I wouldn’t retain the fluid that helps x-ray clarity, which means the results would be suspect. They successfully inserted the smaller catheter, started pumping the fluid into my colon, and I almost immediately felt it coming back out and spilling down my leg. They asked me to clench. No dice. This wouldn’t work.
The doctor came to me and said they were going to try the full-size catheter one more time. If I was in too much pain, or they couldn’t get it in, they’d give up and my surgeon would have to figure out another way to check for a leak. He explained that for most people, the initial discomfort goes away after 30 seconds or so. The nurse rounded on me again and this time was able to insert the catheter and inflate the balloon that was to keep all the fluid inside me.
Unfortunately, the discomfort did not dissipate after 30 seconds. In fact, I was in quite a bit of pain the entire time. But I got through it. Afterward, I voided the liquids that were in my colon and asked if it should have a red tint. The nurses replied that the fluid should be clear. Apparently I was bleeding. Again, I spent the rest of that day and the next quite sore.
A few days later my surgeon gave me the results of the enema. It was a good thing I had stuck it out, because they found a leak. My ileostomy reversal would need to be delayed at least two months. I was also to go in for another colonoscopy with the intent to find the leak and patch it in the hopes it would heal faster. That Friday, March 17th, I met the specialist who would do the patching. She explained that with leaks as small as mine there was no guarantee they would even find it, let alone be able to patch it.
“Butt Stuff March” continued the following Tuesday, March 21, with two at-home enemas and the colonoscopy. The at-home enemas were easier on me than the barium enema, although I also don’t think I did them 100% correctly. I did them well enough that my colon was clean for the specialist, but only barely.
As you can imagine, I was pretty down as I headed to the hospital for this next procedure. Nothing had gone my way over the last several weeks, I was in a lot of discomfort from weekly plundering of my backside, and the specialist seemed pessimistic that they would even be able to do anything about it. I was put under general anesthesia expecting the worst and telling one of the nurses how much I missed my cat in the moment. The adorable demon below, specifically.
I awoke some time later already resigned to the fact that my ileostomy would be with me for at least two more months, if not longer. I had read stories from other people on ostomy forums that had their ileostomies for years before getting them reversed. A nurse approached and told me that they didn’t find any leak. They had shot fluid into my colon and it didn’t go anywhere.
I started to cry, then had to explain to the nurse that they were happy tears. The specialist eventually came by and explained that my anastomosis (i.e., where they had stapled my insides together) had formed a pouch that caught the fluids they shot up there. The x-ray misinterpreted that as a leak.
I was good to go forward with the ileostomy reversal.
I wouldn’t stop for Death, so he kindly stopped for me. I ran away.
Each year on my birthday I try to find something revealing and maybe insightful to say. How successful I’ve been at that only you, dear reader, can tell me. This year, though, feels different. My cancer diagnosis has changed my perspective on life a bit. It’s made me more grateful for the time I have, more determined to make the most of it, and more cognizant of what’s important to me.
In my priorbirthdayposts I sometimes spoke about getting older. I don’t think I realized then that getting older isn’t a guarantee. Being more attuned to the cancer community I’ve been exposed to people much sicker than I ever was, including a few that did die young. I wonder what their plans for the future were. I wonder what opportunities and ambitions they passed up thinking that they would have more time, or more money, or more energy in a future they’ll now never get to see. And I wonder what sort of amazing things we lost in them not getting one.
Luckily, I am still here and (hopefully) will be for at least a little while longer. So let’s talk about my hopes for the future. Things I want to do. Works I want to create. Ways I want to make the world a distant fraction of a percent better than it is right now. Consider this something of a bucket list.
Be there for Elijah as he grows up: Obvious, I know, but it’s my main motivation for doing whatever I can to grow old. I want to see the type of man my son becomes. I want to help guide him into being that man. I want to meet his children. More than anything. If the rest of my life is a huge waste, this will still make it worthwhile.
Gift Elijah Money: What I mean by this is that I want to save money specifically for him to have when he becomes an adult. Not a college fund necessarily because he may not want to go to college, but a nice chunk of change for him to decide what to do with. Travel? Sure. Buy a house? Okay. Save and invest? Good idea. Go to trade school? Sounds great. Start a business? Go for it. The point is to give him the head start my wife and I weren’t afforded, and also maybe avoid some of those predatory loans young people are forced into.
Take my family to Vietnam: My wife was born there, but hasn’t been back since she was a young girl. I want to experience her birth country with her, and I know she wants to share that with our son.
Go back to Greece: A few years ago we took a cruise around the Greek Isles. While I’m sour on cruises because of their terrible environmental impact (and because my wife doesn’t have much in the way of sea legs), our experiences in Greece were amazing. We’d like to go back.
See America: This country I live in is huge, with myriad cultures and experiences to be explored. I want to do a solid sampler platter of it all. Big cities, small towns, remote forests–pretty much everything except maybe the desert. Not huge on sand.
Visit all 32 NHL Arenas / Cities: Even though the NHL is problematic, and hockey in general has a shit culture, I love the sport. I love playing it, watching it, and investing in it. And since each NHL team is based in a medium-to-large city, it’s a good excuse to do some traveling and sight-seeing. So far, I’ve only hit Buffalo (duh), Philadelphia (duh again), and Montreal. Still have 29 to go.
Make a Movie: I’ve been saving and investing with the hopes of eventually having enough money to make a microbudget film. I think I have the right script idea, so now I just need to write it, fund it, and gather cast and crew. In my head it’s totally doable. In reality, it’ll be tough.
Write Like I’m Running Out of Time: I have so many story ideas I’m excited about. Pulpy action / horror stories, sci-fi action comedy, existential stories about religion and grief, and stories I’ve tried telling in the past but didn’t have the skills to get them right. I want to write it all before I run out of time. It’s not really possible, is it? I’ll always have new ideas that I’m excited about. But I can try.
Reenter the Screenwriting Arena: I haven’t written a full screenplay since 2015 or so. I was pretty good at it, but not quite good enough to break through. I think with the experience I’ve gained writing short stories and novels, plus the life experiences I’ve had since then, I could write something special.
Create a Webseries: I initially meant to do this last year, but then, ya know, cancer. It’s something I can write, shoot, act in, and edit myself. I think the idea is pretty good, but the execution will be tricky as a one-man show. Maybe this year will be the year.
Publish: My ultimate goal is to be a hybrid author. Right now I want to traditionally publish my novels and self-publish novellas and short story collections, as I did with Anh Nguyen and Through Dark Into Light.
Get Involved in Politics: I’ve always had an interest in politics. That’s why I minored in Political Science. Getting involved, though, has always eluded me. It’s hard to know how, which isn’t a good excuse. There are also time considerations, and if you really pursue politics the issue of being a public figure (no matter how minor). It’s an ugly arena, but a necessary one.
Volunteer: Again, time is tough to overcome here. Volunteering and politics are closely related in my mind, as depending on where you volunteer that act on its own can be considered a political act. Mostly, though, I just want to contribute positively to people’s lives in some way.
Earn Decent Passive Income: I’m slowly working on this. Between publishing and investing, I have some passive income coming in, but it’s really only worth a couple of decent dinners per year right now. I’m not going to be paying the mortgage with it anytime soon. The goal, then, is to get to that point.
Obviously, a lot of these goals could be broken into sub-goals. I have specific places in America I would like to see, specific areas I would like to volunteer, etc. But as a broad list to look forward to for whatever might be left of my life (if cancer doesn’t get me, maybe an assassin will?) I think it’s a good one.
This is probably the best I looked during my hospital stay.
If radiation and chemotherapy were bad dreams, I was about to walk into a full-fledged nightmare.
On December 16th, 2022, my wife dropped me off at the hospital before sunrise. I walked in alone, stripped down and changed into a gown, and was met by a small parade of doctors and specialists. I don’t remember what order they came in, but I spoke with my surgeon, an anesthesiologist, an ostomy nurse, a urologist, and various other nurses who took vitals and stuck me with needles. We were delayed starting the surgery because the computer systems were down, which meant that any orders for medicines like pain killers weren’t being filled. My surgeon gave me the choice of delaying the surgery for another day, or going through with it (the surgery itself wasn’t reliant on those systems) and betting that the system would be back up by the time we finished the procedure. Considering that I knew the surgery was complicated enough to last at least six hours, I bet that the systems would be back up. Perhaps this was an omen for what was to come.
They wheeled me through the hospital into where I assume the surgery happened and knocked me out. I remember very little going into the next day, but from what my surgeon told me afterward my anatomy was a little harder to work with than they expected. Apparently, some of my organs stuck together, which led to more manipulation of my insides than is normal for this type of abdominal surgery.
When I finally gained some semblance of consciousness again (anesthesia really fucks me up, apparently), I had six new scars around my abdomen and a stoma covered with an ostomy bag. After they fully heal, the scars won’t be that large because the surgery was robot-assisted laparoscopic surgery. The incisions were painful for a few days, but healed pretty quickly. The stoma, on the other hand, is a physical and emotional challenge.
Because my tumor was on the upper end of my rectum, close to the colon, my surgeon removed a good chunk of it and then reattached what was left. This type of surgery can take up to two years to heal, though everything is able to function again after a few months. But, since I’ve lost the ability to use my rectum while it heals, I need another way to pass waste from my body. To do that, I was given a temporary ileostomy. The end of my small intestine was pulled to the outside of my abdomen and manipulated so that it has an opening to pass waste. I have an ostomy bag to cover the stoma and catch the waste. It’s as inconvenient and gross as it sounds. I’m lucky that my ileostomy is temporary. If my cancer was lower in my rectum, they may have had to remove the entire thing and the ostomy would be permanent.
That said, adjusting to having a stoma (CW for a picture of a stoma at the link) and watching waste pour from it into a bag is difficult, mentally and emotionally. The surgeon, ostomy nurses, and a few other nurses talked to me about how many people with new ileostomies can’t even look at it for a long while. They need help cleaning the stoma and changing the bag. I didn’t have this problem. Not because the stoma and bag don’t bother me, they very much do, but because I’ve always had a “deal with it and move forward” mindset. Within my first few days at the hospital I met with the ostomy nurses who showed Hanh and I how to clean and care for my stoma and change my ostomy bag. At first, I needed help from Hanh or a nurse to change the bag, and I still need help sizing the bag’s opening to my stoma (I suck with scissors), but now I prefer to do it on my own. It’s messy, embarrassing business, and I think it’s best I handle it myself.
Despite all that, the surgery can be considered successful. Even though I ran into myriad problems while recovering over the next month, the surgery accomplished some important things:
The cancer was totally removed with good margins. While doctors don’t like to say “cancer free” because there is always risk of recurrence, there is high confidence my recurrence rate is very low.
There is no leaking from where my rectum was reattached to my colon. That’s good, because it could kill me.
My bowels didn’t become twisted or anything else that would lead to another surgery. Everything is in its right place.
What I did have was a nasty ileus. For the link-impaired, an ileus is basically when your intestines stop working. That means they’re not pushing anything through, which leads to bloating, distension, cramps, and eventually vomiting. In most cases, an ileus will resolve itself within a few days. For me, it took weeks. Weeks of being unable to eat without cramping, nausea, and vomiting.
The first few days, maybe even the first week, is fuzzy. I was in a lot of pain, unable to eat because my stomach was distended. I slept as much as I could. I have flashes of memory in this time–briefly waking from my anesthesia stupor to hear the nurses commenting that I still didn’t have room (from what I can piece together it took the hospital over eight hours to get me a room after surgery); when I was finally in a room, a nurse asking me if I could stand, trying to help me, and the room spinning out of control; apparently answering some texts and a phone call with a friend I don’t remember; and having my urinary stents and catheter removed (felt weird!).
I had multiple catheters during my stay. Because of my bloat, plus a hematoma resting somewhere below my bladder, there was pressure on my bladder that made it so that I was retaining urine. The worry, then, was that the urine would backup into my kidneys, causing even more problems. The first time I had a catheter put in (while I was awake, anyway), I warned the nurse I was going to be a big baby about it. I laid flat on my back and held onto the rails of the hospital bed for dear life, not sure what to expect but assuming it wasn’t going to be pleasant. The nurse pinched the tip of my penis, then inserted the catheter into my urethral opening (a.k.a. my pee hole), sliding it up through my shaft and into my bladder. It felt weird, but wasn’t painful, and I thought that wasn’t so bad. Little did I know how bad it could get.
The second time was similar, if a bit more unpleasant because the nurse had a harder time moving the catheter past my prostate. The third time wasn’t even supposed to happen, which was mistake number one. See, I had an agreement with my surgeon that as long as the urine in my bladder didn’t exceed 600mL we wouldn’t use a catheter. At this point I was peeing okay. Not great, but well enough to keep the levels down. Every six hours I would be given an ultrasound on my bladder and most of the time there was around 550mL of urine sloshing around in there. Not great, but below our agreed-upon threshold. One morning, a urologist I hadn’t met before visited me and we talked about my issue. No big deal, lots of random doctors and specialists would come talk to me. She left and I thought nothing of it. Later that day, I was given another ultrasound. The numbers were as they usually were, but this time the nurse said the threshold documented in my charts had been lowered to 300mL. She would have to give me a catheter to empty my bladder. Hanh was with me at the time and we were both confused. But, I figured, it was better to empty my bladder and maybe not have to worry about it for a while than to keep playing this game. Perhaps I was too trusting of the urologist and this nurse, but I consented to having it done.
We went through the same process as usual, but when the catheter was inserted I felt the sharpest pain I’ve ever felt in my life. I tensed and the nurse told me to relax. For those that don’t know, that is the worst thing to say to someone who is in pain. She kept pushing the catheter through and I cried out, “I’m in so much pain!” to which the nurse replied with another relax, once again making the situation worse. Finally, the catheter reached my bladder and the pain stopped. She only kept the catheter in as long as it took to drain my bladder. Even as she removed it, I knew there was no way I was going to allow that to happen again.
About an hour later, I felt the urge to pee. I went into the bathroom with the container they wanted me to pee into in order to measure my output, and struggled to go. I couldn’t see what was happening beneath my gown, but what was coming out felt thick and warm. Finally, I lifted my gown to see what was going on. There was blood all over the container. The catheter had cut me somewhere.
I called to Hanh to find a nurse. She ran into the hallway and, after one failed attempt, found one. The nurse came into the bathroom, begging me to stay calm and not pass out (I wasn’t going to–I genuinely wasn’t panicked about it), and checked me for a cut. They had me bleed into a container until it clotted. Afterward, I had to wear special underwear with a pad until we were sure the bleeding was over. Word of what happened eventually got around and a few doctors apologized for the trauma, and advised me not to consent to another catheter. I whole-heartedly agreed.
In time, it became clear that my ileus wasn’t resolving quickly. That’s when we had to start the gnarly treatments. Because my digestive system wasn’t moving anything through, there was a build-up of fluid and gas inside my stomach. Cramping, a truly disturbing amount of vomiting, etc. To relieve this, a doctor gave me a neogastric (NG) tube. It’s a long plastic tube that goes into your nose, curves down your throat, and rests in your stomach. It’s attached to a suction device that pulls excess fluids and gasses from your stomach into a container to be measured and disposed. While “tubed,” you can’t eat or drink anything. All of your nutrition comes from IVs.
As I had this first tube inserted, I gagged and vomited all over myself. Panicked, unable to breath, I wanted the doctor to stop and come back to it. To his credit, he remained calm and finished the procedure, then helped me to clean up. Embarrassed, I actually later apologized to him for panicking. He took it in stride and said it was a natural reaction. I would be “tubed” three more times over the next several weeks. The longest I had a tube in, meaning the longest I couldn’t eat or drink anything, was about a week.
At one point, while with tube, my surgeon ordered x-rays that required contrast in order to see what my digestive system was actually doing (spoiler: not much). They gave me the contrast via the NG tube. It was a strange feeling to feel the liquid going down my throat and into my stomach through a tube. The x-rays themselves weren’t too bad, outside of the annoyance. They brought the machine right into my room (most of the time), rolled me over, put a hard plastic square under me, and then took the x-ray. It was a five-minute process, but when I had the contrast they had to take x-rays every hour or so, which meant I got no rest.
Rest is a problem in hospitals. All day and throughout the night you’re dealing with noise like alarms going off (my IV especially liked to shriek randomly about bubbles and blockages); light from the hallway; and frequent intrusions to get medication, take vitals, or be looked in on by a nurse or doctor. For a light sleeper like me, that meant I’d be lucky if I could string together two hours of solid sleep before being awaken.
The 4:30-5:00am blood draws were most annoying. The doctors need the results when they come into work, so the lab draws your blood at this time, which means being woken up. My surgical team would typically come in between 6:00 and 7:00am to check on me and give me updates on the recovery plan. Breakfast (if I was allowed to eat) would come at 8:00am. Vitals would be taken every one to two hours. In short, solid blocks of sleep were almost impossible. Early on, during my first hospital stay, I would go to sleep not long after dinner. After I was readmitted to a different hospital, I tried to take naps in the mid-morning, after my doctors visited, and sometimes in the afternoon.
Yes, I said readmitted. I was initially discharged on January 1st. My ostomy had been producing (perhaps too much, in hindsight, since I burst bags overnight twice) and I was able to eat solid foods without getting bound up. We all thought I was finally in the clear. I went home, greeted my cats, and we finally opened our Christmas presents. I sat on the couch, watching Elijah open his gifts, and felt exhausted. Exhausted from everything that had gone on in the hospital, but also an overwhelming fatigue. I went upstairs to the spare bedroom, which Hanh had set-up with a TV, bar on the bed to help me get up, and a tea station. Eventually, Elijah came upstairs to visit. After not seeing him for weeks, I lost it. I held his hand and cried. He wasn’t quite two years old, yet, but I think the weight of everything became clear to him in that moment. He patiently waited for me to finish sobbing before he took his hand back, and then he stayed with me a bit longer. Everyday afterward he would ask Hanh to come upstairs so he could “check if Daddy is okay.”
While home this first time I only ate two meals–chicken and white rice for dinner, and toast and eggs for breakfast. My ostomy was producing, but very slowly. I started to feel full and had a lack of appetite. We called the surgeon and was told to try a liquid diet. I still wasn’t able to take much in. On Tuesday, January third, I had cramps and vomited that night. We again talked to my surgeon and he told me to come into his office. He said the sooner the better, but I wanted to wait overnight to see if I felt any better. The next morning we went in.
I wasn’t readmitted right away. First, my surgeon saw me at his private office and digitally penetrated my ostomy to check if it was too tight for food to move through. That wasn’t the case. At somewhat of a loss, he recommended I go to the hospital across the street and readmit myself through the ER. I took his advice, and my wife and I sat in the waiting room for a room to open up. I cried again, frustrated that we were starting this process over again. Eventually, I was put on a stretcher in a room in the ER. I was given another NG tube (I vomited again, but this time the tube caught it before it came all the way up–how fun!) and a PICC (peripherally inserted central catheter) line.
I had a PICC line at the first hospital because it was the only way I could get nutrition. The PICC line is used for many things, but primarily ingesting a total parenteral nutrition (TPN) bag. It’s basically a minor surgery done right in your hospital bed. A specialist comes in, sets up an x-ray machine, numbs your arm, then inserts the PICC line through your arm and into a vein near your heart. It’s mostly painless, but getting it a second time clued me into the fact that this stay wouldn’t be a short one. I wouldn’t be discharged again for another ten days, on January 14th.
Aside from the NG tube, this stay was a bit easier. The hospital was nicer, with a private room, and I was already on the mend so my discomfort level was less. I had to keep the NG tube for nearly a week, which sucked, but by the end of the stay I was able to eat full meals. My ostomy bag was producing consistently, maybe even too much, and I was eager to go home. I had spent enough time away from Elijah and Hanh.
My saving grace throughout this ordeal was Hanh. She visited me nearly everyday, staying hours so I wouldn’t be alone. She acted as my nurse when I needed her to, helping me to change my ostomy bag, cleaning my hair since I couldn’t shower, and getting me water. She even brought in a mattress pad because the hospital bed was so uncomfortable and let me borrow her iPad to buy a bunch of movies to pass the time. The reason she was able to spend so much time with me was twofold: 1) lucky timing meant she was on winter break from work for the entire time I was hospitalized and 2) my sister, Marisa, drove up from Virginia a few times to watch Elijah. Without those things, I would have had a lonely stay.
I’ve spent this entire long-ass blog post describing how traumatic my hospital stay was, but I also want to recognize that the medical professionals I dealt with were largely great. I trust my surgical team completely, and all of the nurses that took care of me (apart from two I had to side-eye) were great. Hospitals are inherently uncomfortable. Many medical procedures are inherently uncomfortable, painful, or traumatic. It’s no one’s fault. It just is what it is. And, to be more objective, things like the NG tube are legitimately helpful. Rationally, I understand all of this. Emotionally, I’m not looking forward to my next surgery in March to reverse the ostomy. But, until then, I’ll work on getting stronger.
Craig Gusmann is a writer currently stationed in PA with his wife and two cats. Sent from the future in a clear homage to The Terminator, he wanted to get a head start on perfecting his use of words. Feel free to let him know how he’s doing.
