Introduction
Fuck cancer. I think we can all agree that’s as good a place to start as any. It’s one of those universal, unifying statements that cross all sorts of sociological and ideological lines. I have been thinking about putting my thoughts on my journey down on paper for a while. I have heard that some people journal their experiences, and you would think I would’ve, since writing is one of my hobbies. The thing is, I hated talking about it, and I hated thinking about it. I rarely even said the word “cancer.” It wasn’t something I wanted to name or dwell on. Now, over a year after my diagnosis and about a year since the surgery that removed the thing inside me (that was my go-to name for it), I am finally ready to spend some time thinking about all of it.
This is not going to be a play-by-play of my initial symptoms, diagnosis, treatment, and recovery. That is something I do not want to do, and nothing good can come from reliving everything in detail: I have a hard enough time with hospital and cancer storylines in media. Instead, I am going to lean into my ADHD and pick elements of what I went through with no regard to timeline. For example, the infusion center will be a section, but not every time I went, and the blood draws or appointments that came before. I am going to bounce around locations and days. I am not going to get into the nitty-gritty of this whole thing, and be prepared for some glibness about what I went through and what was inside me.
I have made plenty of jokes about it, and those made more than a few people uncomfortable, especially when I still had the tumor. What I went through was tough; this is true. Some days were harder than others. Some days felt completely normal, and I didn’t need to dwell on what was happening inside my body. Other days were incredibly tough-did you know there is a shot where one of the side effects is that it makes your bones hurt? I didn’t, but I sure do now. One reason for the off-hand remarks is that when you are sitting in an infusion center, surrounded by other people going through something similar, it gives you perspective. I had it easier than a lot of the others I saw there. I never felt like I had cancer. People told me over and over that I had it. I spent literal days attached to a tube pumping poison into my body to treat it, but I never felt like I had it. It wasn’t the disease that made me feel miserable; it was the treatment. To me, naming it, discussing it, or thinking about it gave it power. I didn’t want pity at any point in this journey-ask my parents how many times I told them that if I needed something I would ask (and then ask me if they ever heeded those words). I did not want this to define my existence in the same way I tend not to tell people I have ADHD because of the stigma around it. I just wanted things to be as normal as possible, and dwelling on it felt as far from normal as I could imagine. It is not that I didn’t take this seriously; believe me, I did. It is that those jokes, glibness, and dismissiveness were as much a part of my treatment as the chemo was.
This is my story, told the way I want it told: with as much sincerity and humor as possible, because if there is one thing this journey has taught me, it is that sometimes we just need to chill the fuck out.
Diagnosis
Before I get into the fun stuff, let’s talk about the inciting events. This is going to be a (semi) brief overview of everything that led up to my first lengthy hospital stay. It really all started with back pain. It wasn’t something I thought that much about; after all, I was 40 at the time, so that just seemed to be the price I paid for being old (though I would be told I wasn’t when it came to getting a cancer diagnosis, so there’s that). I wouldn’t find out until later that the pain in my back was the tumor pushing on a nerve cluster-which has always made me wonder how long that thing was growing in my abdomen. I had back pain for years before all this. It mostly showed up when I had to proctor tests at school. We aren't allowed to sit for the entire 3.5 hours of testing. My lower back, right where the tumor was, would really hurt about an hour or so into this marathon of walking/standing. I just assumed it was the fact that I was standing for that long because the pain would go away after the two days of testing. It just can’t be a coincidence that my back hurt in the same spot where a tumor would be found to be pushing on a nerve cluster a few years later. Now that I ultimately ended up with my femoral nerve being resected and my right leg severely weakened, when testing comes up, I am not asked to go into a classroom. I get to take an accommodation group to a separate location, and I get to sit. So if there is one bright side to the epic adventure I have been through, it is that.
The real problem started with the night sweats. I woke up most nights to a soaked shirt and damp sheets. I felt fine during the day (that would change) and started to feel a little shitty in the evening. I would change my shirt, move to the other side of my bed, and go back to sleep. This, while concerning, was not something I was going to get a doctor in on, except for my dad. I figured I was just fighting off a bad flu. I do work in a school, and kids are little germ factories-come at me, parents, your kids are gross. Then things slowly got worse. All my symptoms were still just a bad flu, so I figured I’d get over it eventually. Being that children are disgusting, germ-filled creatures, I have developed a pretty strong immune system. When I did get sick, it was minor, and I got over it in a matter of days. Except for two instances of COVID, I never called into work when I got sick. There is a small part of me that is convinced I got cancer because my body was telling me to take a fucking break when not feeling well. Nothing makes taking a break critical to your health like going through chemo-more on that later too!
Because I am an idiot, I kept working. I was using a ton of hand sanitizer, blowing my nose a lot, and popping cough drops like candy. It was in mid-April when, after about a month or so of not getting better, I went to an urgent care and hoped to have a doctor there take a look at me. Well, the dude barely looked at me; all he did was take out his stethoscope and listen to my lungs and heart. Apparently that was all he needed to tell me that I had pneumonia- my, oh my, how wrong he was. So wrong, in fact, that when I got the bill for that five-minute visit, I seriously debated paying it. I mean, should I really have to pay for a massively wrong diagnosis? Someone should introduce some legislation. Anyway…my dad and mom were going to, or coming from, Ann Arbor, Michigan, a few days later. One of my sisters and brother live there, and they go through Canada when they visit. One cool thing about living in Buffalo is that the Peace Bridge is very close (I used to be able to walk to it in 10 minutes). They stopped by my house, and my pulmonologist dad listened to my lungs and heard nothing. He said it wouldn't clear up that quickly, so I agreed to have one of his co-workers take a look at me and get a chest X-ray. And here is where the fun starts. That led to my very first CT scan! We will get to those a little later-but needless to say, I am a frickin’ CT veteran now and have some very strong thoughts on my experiences. This first scan was when we finally started to get answers-there was some kind of mass in my lower abdomen near my appendix. I still didn’t know what it was, but something was there, and it was most likely the source of the problems. After that, I went to the ER, and you bet your ass I’m going to talk about that complete waste of time. There, it was thought I had appendicitis or a burst appendix. In hindsight, this was really the first indication that truly figuring out the issue was going to be a long, painful, and annoying process, because as you know, it was neither of those things. However, it did involve the appendix, so at least that part was correct. After an overnight stay in the ICU, I finally went home, still not really knowing what was wrong with me.
Another scan later showed it had grown, which basically meant it was what I was hoping it wasn’t. I had a biopsy at Roswell, and my worst fears were confirmed. There were no plans put in place as to treatment and all that, so I had planned on going back to work until we knew exactly what it was and what needed to be done about it. But the universe said, not so fast. On top of the cancer, it turns out that I had a secondary infection as well, because being diagnosed with cancer wasn’t enough. I still felt like garbage and ended up getting admitted to Strong Memorial Hospital on June 5th, and that feels like as good a place to start as any.
