What Do (and Don’t) You Expect?

Expectations. From the second we come into this world, there are expectations. They expect their bouncing baby girl to be a prom queen, or a genius, or an author, or a myriad of things. They expect their bouncing baby boy to be the star quarterback, or a ladies’ man, or a bookworm, or a whole host of other things.

Everyone expects bumps in the road of life—they’re inevitable. Without those bumps, we can’t grow as people. Bumps vary in size, though: a big zit on your face on picture day in school, doing badly in a class we thought would be easy, getting a cancer diagnosis.

Wait, what? That last one is a bit of a jump, isn’t it?

Yeah, it is. But as we all know, cancer just pops up like anything else. One day, our life is moving at a nice pace, and the next, it’s speeding up as you get rushed in and out of exam rooms and scans.

It sure upends our expectations, doesn’t it? Nobody expects to get cancer at 24. You expect to get cancer when you’re a grandparent, not a college graduate (or at least it seems more normal in the 60+ age, when someone has had an opportunity to live a fuller life)!

At the start of cancer, even if you’ve had experience as a caregiver or a family member of someone who dealt with cancer, the image of “Movie Cancer” probably pops into your mind. What’s Movie Cancer? You know, it’s when, in a TV show or movie, someone coughs or has a nosebleed (why is it always a nosebleed? Why not something like breaking a bone or ending up in the hospital because you were neutropenic without knowing it?), and they go to see a doctor. For some reason, in the movies, they always end up talking to their doctor in a room with a desk and a bunch of diplomas—not on those uncomfortable exam room tables with the paper that crinkles so loudly that you swear people in the hallway can hear your every little movement. Then they get a diagnosis, the music swells, they’re in an infusion chair getting treatment, they vomit, lose their hair, vomit again, and then they’re either dead or they’re finished with cancer.

Movies never prepare people for what happens after cancer—the long-term effects of cancer and treatment: chemo brain, PTSD, neuropathy, scanxiety, and the slew of other things that nobody expects until they meet other patients. Then they know that all of those are normal—they aren’t weird for wanting to vomit after sitting in a certain room at the hospital or sitting on the edge of their chair until the doctor says their results are good.

When you get cancer, it takes the expectations you had for your life and tosses them into a paper shredder. After you’re done with cancer (or at least a bit further down the road of your journey with cancer), you need to decide what you want to do. You can try to get back on track to achieve your goals, or you can go back to the drawing board and start from there. Understandably, cancer can be a transformative experience.

I have a chronic leukemia that I was diagnosed with back in 2015; both subtypes of large granular lymphocyte (LGL) Leukemia and I are going to be odd bedfellows for decades to come. It’s made me change my expectations. Back when I was in college, I believed that I would get a job, find someone, move out at some point, and maybe have kids. However, I got a bachelor’s degree in Elementary/Special Education, and now I am mildly immunocompromised for the foreseeable future. Anyone who has interacted with kids knows that they are roving, sentient petri dishes who will end up getting people sick at the drop of a hat. So, that expectation is out the window.

When I started treatment, I was told that it would be different because I had a chronic cancer. I was told it would be weekly pills and that the side effects wouldn’t be “that bad.” I asked the doctor something like, “So, it’s just pills once a week, nothing big—like how I take pills for my epilepsy or how someone takes medication for a condition like diabetes?” He said yes, so I expected maybe a mild inconvenience, nothing too big. I went into my first day of treatment 10 days later with that mindset.

That expectation was shattered quickly. The day after my first six pills (and some prednisone pills—everyone’s favorite!), I was in the ER with an irregular, racing heartbeat and severe nausea. I got checked out and sent on my way. Weekly, I had nausea and vomiting, and I managed to endure it much longer than I expected—two years, almost to the day.

Since cancer, my expectations for others are a bit different. Instead of being shocked by the “Oh, you’re so young!” comments I get from time to time, I just wait until whoever is with me at the appointment and I are alone, and we go, “Haha, another person who thinks I’m too young for cancer.” I really should start a tally of those. If only I had a dollar for every time I’ve heard that… I would have quite a few dollars.

I’ve never seen myself as a representative or a leader. Cancer has changed that, no matter how much the little voice in my head says, “What the hell! There’s no way they’re talking about you!” If you had told college-me that in 2023 and 2024, I’d be called a leader in the patient community by a research coordinator for a disease I have, I would’ve said that’s insane. There’s no way I’d ever put myself in such an outward-facing position. I’ve always been a wallflower, an observer, a quiet type. I still am, but with internet things, I try to find information and resources. If there’s a gap, I try to figure out why it isn’t filled. Sometimes it’s as simple as, “Oh, this isn’t showing up very high in the Google results. I should save this so I can send it to someone if they ask.” Sometimes it’s that there isn’t something adequate out there, and I end up cobbling together my own community, like how I created a Facebook group for LGL Leukemia support along with a website.

One thing I didn’t expect when I got cancer was the amazing community around it. As people like to say, we’re joining the greatest club for the crappiest reason. Everyone in the YA cancer community is amazing in their own way, as cheesy as that sounds. There are so many cool things about the community at large: there are social groups, writing workshops, a magazine, even a camp! For adults!

Cancer changed my life in ways I never expected.

This article was featured in the December 2024 “Expectations” issue of Elephants and Tea Magazine! Click here to read our magazine issues.