Category: chemotherapy

Craig’s Colorectal Cancer Crisis: Part III

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.

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.

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