Today, I wanted to tell you all a story about something that I had to deal with many moons ago. This story isn’t meant to garner sympathy, or to try and say I’m “tough.” Quite the opposite, in fact. Sometimes, when we’re dealing with one thing after another, we can get numb to it all. We’ll just ask ourselves “What’s the difference? That’s just our reality.”
It was mid-November 2019.
The weekend before Thanksgiving. I was helping vacuum around the house, when I went to pick up a pair of shoes to vacuum where they were. All of a sudden, my back gave out. I couldn’t stand up straight, I could barely walk. It felt like someone had grabbed ahold of my spine and snapped it clean in half. With some help, I made it to the recliner in the other room.
It was there that I was stuck for the next two days. I could barely even get to the bathroom. Certainly not without any help. My family kept trying to convince me to go to the ER, and I kept shooting them down. As a zebra, I’ve had more than my fair share of ER visits. And if there’s one thing I’ve learned from them, it’s that doctors like to overlook things and try to blame things on the simplest explanation, not the right one. As a zebra, unless your brand new symptom is something like a seizure, you typically avoid the ER.
Then, on the third day, I finally caved. At this point, I thought “What’s the difference? Even if they can’t fix whatever’s going on, maybe they’ll at least be able to stop the pain.” Getting me out of the recliner and into the car was quite the ordeal. Every bump the car hit felt like someone stabbing me in the spine. When we finally got to the ER, they decided to give me a wheelchair so I wouldn’t have to walk. That, at least, was some relief.
Fortunately for me, they deemed my condition bad enough to have me jump most of the queue, and within just a few minutes, I was back in triage. The nurse was a pleasant young woman named Tessa.
I got asked all the standard questions.
How bad my pain was, was this a work-related injury, what happened, et cetera. No, it’s not a work injury, I hurt my back picking up a shoe, the pain is probably an 8 or 9. She asked me why I was only saying an 8 or 9. I could imagine some other things would probably hurt more, that’s why.
But then, she gave me a look and said something that changed my outlook on rating my pain level to this day. “It’s not about whether you can imagine something worse, or what you’re used to. It’s about how it’s impacting your ability to function right now. You can’t walk and you can barely talk. You’re at a 10.” Grudgingly, I agreed to let her put my pain level down as a 10. I don’t like things being labeled as the worst they can be, because I know things can always get worse.
It was probably the fastest a doctor has ever seen me at an ER.
The doctor was surprisingly unhurried and open to listening for an ER doctor, which is always a pleasant surprise. I’ve found that to be the case with female doctors far more than male doctors- female doctors, more often than not, at least in my experience, are far more empathetic with their patients and less concerned about playing god.
I got sent back for a CT scan– due to where the pain was, the doctor wanted to make sure it wasn’t anything related to my kidneys. Kidney problems are always no bueno. After all, from a 2017 report, kidney disease is the 9th leading cause of death.
Then, over an hour later, the results came back. That sounds like a long time, but realistically, a little over an hour is probably the shortest amount of time I’ve ever waited for scan results to come back in the ER. When the tests came back, the doctor had both good news and bad news. The good news was my kidneys were fine.
The bad news was that there were masses all over my spine.
The doctor said it probably wasn’t the dreaded C-word, but that I needed to see an oncologist ASAP. I remember being a bit rattled by finding this out, but not as much as one would typically think after finding out at least part of their skeleton was covered in masses. After all, it’s just Another Bad Thing on top of everything else. What’s the difference? Why freak out over what’s probably inevitable? They prescribed some muscle relaxants to help with the back pain until I could get everything sorted out.
The cancer center associated with the hospital didn’t have any appointments soon enough, and I wanted to get this over with- not just because I wanted answers, but also because I needed to get back upstate as soon as I was able to, because I had only initially taken the week off from work to come down to Long Island to visit my family for the holiday. So, I did some digging, and found the wonderful folks at New York Cancer & Blood (if any of y’all Southern NY folks need an oncologist, 13/10 would recommend them, they’re great). I got paired with an oncologist who is still a part of my core medical team; she’s quite possibly one of the greatest doctors who’s ever lived and deserves all the cookies.
She agreed with the ER doctor that the masses on my bones were probably not cancer, but that they definitely warranted a closer look, because surprise, surprise, bones aren’t supposed to be covered in masses. She ordered a PET scan to take a closer look.
And that’s when the real fun started.
The good news was that she was right; the masses on my bones were benign. Worth looking into, but benign. But they’d need to take a back seat for now, because the PET scan did show something.
That something was a bright, lit-up 7.4 cm mass in my colon.
For those of you who are new to PET scans, here’s how the work, in layman’s terms: you get injected with a radioactive sugar-y concoction that makes anything growing out of control in your body light up like a Christmas light. Most commonly, that’ll be an infection, or cancer. It’s not a definite diagnosis of anything, it’s just a very strong indicator.
The way to diagnosis a mass in your colon is even more fun- a colonoscopy. Those of you in or past your mid-40s can relate to how much fun they are.
Getting it scheduled was a nightmare.
First, I had to wait over a week just to see the doctor. But he wouldn’t be available to do a colonoscopy for around a month. And when you’re dealing with unknown masses that light up on PET scans, that’s too long to way. Fortunately, one of the other doctors at his practice happened to have an opening just a few days later.
So, the second Monday after Thanksgiving, I had my colonoscopy. It was delightful, and they removed the mass and biopsied it. Waiting the two weeks to get the results back was stressful, but not as much as I would have expected, had it happened just a few years earlier. After all, what’s the difference? It’s just one more thing. My oncologist didn’t want me going back upstate until everything was taken care of (understandably), so it was just that much more time waiting at home.
I got the results back just a few days before Christmas- it hadn’t been cancer, but had been precancerous. We were lucky we caught it when we did, because even just another couple months down the line and we could’ve been looking at a very different and much more serious situation.
At the beginning of January, I got one of the larger masses on my spine biopsied.
Fortunately, that turned out to be benign. Apparently, I just have bony masses all over my skeleton. They don’t seem to be causing any major problems besides some pain and the occasional muscle problem, so we leave them be. That being said, I do still get PET scans a few times a year, because random bony masses aren’t supposed to be there, and anything that’s not supposed to be there could at any point turn into something not-so-benign.
By then, what was originally supposed to be just one week back on Long Island had turned into nearly two months. It was a stressful time for all.
I tend to use humor to cope with my health issues.
For me, the alternative is either total apathy or turning into a black hole of despair. Neither of those are particularly fun, so I may as well make the entire thing into a joke. Yes, sometimes I get a little apathetic about my health issues when something new pops up. It can be hard not to- you get so many new symptoms and new diagnoses. It’s easy to think to yourself “What’s the difference? It’s just one more thing.”
There’s no right way to deal with it. Even for me, leaning into the humor of it, I’m pretty numb to it all. New symptoms and new diagnoses that would freak out non-zebras tend to just roll right off me. And it’s not because I’m “tough” or “strong” or anything. I’m just used to it. It’s my reality.
And when us zebras tell you these sorts of stories, it’s not because we’re looking for sympathy or platitudes. We’re just trying to give you an idea of what our lives are like. What we’re dealing with. So next time your friendly neighborhood zebra tells you a story like this, consider that maybe they don’t want to hear another person telling them how “strong” they are or hear how sorry you are. They trust you enough to tell you something like this. The fact that you’re now aware of what their life is really like, rather than being another person who gets the standard “yeah, I’m doing fine!” means they trust you.
What’s the difference? These stories aren’t for sympathy. They’re because you’re someone we trust enough to tell it how it is to.
Until next time.
-Nick
Instagram: @the_disabled_writer
Facebook: Nick O’Brien, Writer/Composer
TikTok: @the_disabled_writer