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.
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