Ya know, when I had cancer that one time.

Almost sixteen years since they told me I had cancer. So that’s about how long I’ve tried not to think about it. But I’m ready now.
I was fifteen years old, almost sixteen. 7/11/00. I hate when I pass by a clock and accidentally read the time. 7:11, twice a day, a cold feeling of dread.
But I’m alive. And I’m thrilled to be alive. And this is where I’m supposed to stop.

It’s not okay to survive cancer and then complain about what happens next. Because you made it, and others weren’t so lucky. It’s best to stay positive, put on a brave face for the people still fighting it. Besides, what if seeming ungrateful somehow earns you another lightning strike?
When you kill the cancer, you create a ghost that never leaves. The cure was poison, injected into my developing body and brain. There’s a price to pay for that.

I’d had a swollen lymph node in my neck removed, and my mother says I calmly informed her it was cancer. I have no recollection of that, though…I seem to be missing a lot of memories from my teenage years. But I do remember, vividly, what I looked like the day I found out, in the same way I can still taste what I ate for breakfast on 9/11. I’d worn a white t-shirt with a red Chinese dragon on it, and it had turquoise Hawaiian flower cap sleeves. (If this was fiction, I’d be foreshadowing my three years on Oahu. But it’s just fashion ca. 2000.)
When the doctor walked in to inform my mother and I that I had Hodgkin’s disease, she started bawling. Then everyone immediately left the room.

I sat there, alone, and stared at myself in the mirror on the wall. I wondered if it was cancer, if everything was about to change, if I’d lose my long hair… who would I be after this? what would happen next? how bad was it? As the minutes passed by, and no one returned, I had to smile. They’d told a teen girl she had some terrible disease, then left her alone to process it with no further information. Um… Oops?

My dad searched AOL for everything the internet had on my disease and printed out a huge stack of papers. My mom couldn’t handle any of it, so he brought me to my treatments and waited in hallways while they did my scans. While the techs took bone marrow from my hips, I cracked jokes about how I could feel it slurping out. My poor dad was sweating and pale when I got out of there, and he still does this nervous laugh every time he recounts the story. Someone else had been screaming in another room, and he thought the whole time it was me.

Oncology clinics have a sickeningly sweet scent that makes me instantly want to vomit. I can smell it even now, mingling with the scent and taste of the chocolates they had in the waiting room. Big bowls of processed “fun sized” candy in an oncology clinic were just another absurdity in a long line of them. All the things people say, the things they do, the things they feel but don’t want you to sense… it’s a clusterfuck of cognitive dissonance. And adults experience a lot of cognitive dissonance around a fifteen-year-old with cancer. Or maybe around anyone with cancer.

I was always the youngest one there. Some of us weren’t getting out of there alive, and everyone knew it, but no one ever wanted to say it. Except the psychologist. My jokes got me sent into her office for “handling it too well”. She gave me a few positive thinking books, plus one about preparing for my death. My cancer was supposed to be 95% curable or something, so I was sure that wasn’t appropriate. Luckily my dad let me fire her and didn’t force me to go back.

After I started my treatments, I was leaving clumps of hair in every garbage can in school, so I finally cried about it, then shaved my head. Everyone at the wig shop was so nice. Big smiles, encouragement, enthusiasm on the outside, but so much sadness on the inside when they looked at me. This felt like a game I didn’t want to play.

Bald girl wears the wig so she feels prettier and more normal. Other kids and adults feel more comfortable around her because everyone can pretend she’s fine. Adults are kind, but some are filled with a raw sort of vibrating terror. They want to look away, especially when they have to see a bald girl going through chemo every day. “If it could happen to her…” the knife whispers with a twist, “it could happen to your child, too. Or you.” Nobody wants to think about that. But the wigs were itchy and hot, so I decided I wasn’t going to wear one to make everyone else more comfortable. I opted for a hat.

After I was diagnosed, I went looking for a new journal to write in. When I saw one that had half white pages and half black pages I snapped it up. It was the most perfect vehicle for dissociation that I’ve ever seen. I filled the black pages with details of how much the chemo hurt in glittery gel pen. The white pages contained high school drama and stories about boys, plus me trying to lie to myself that being bald wouldn’t matter that much.

But I knew. One of the positive quotes I hung on my bedroom wall read “The Tide Always Comes Back.” “Sweet sixteen” wasn’t happening, but someday I’d have a new haircut, I’d be a singer, someday I’d have my first kiss. Just not right now. I’m not sure which journal pages got the details on Christina Aguilera’s Christmas album. I was so excited to get it and learn all the songs, but 30 seconds after opening it, I puked, and the lyrics booklet fell into a bowl of neon green.

Sometime during treatment, I met a pretty, thin girl with long brown hair from another school who sang a bit like me (or like how I wanted to sing). She invited me to her house, where I vaguely recall singing or talking about singing, but it was tough trying not to compare myself to her. She had everything I thought I needed if I ever wanted to move on with my life and fulfill my dream of becoming a singer… but I was bald, sick, puffed up from the steroids, and sidelined from life for the foreseeable future.

I remember going to a sleepover, too, and telling the other girls chemo felt like being hit by a truck–there were muscles and bones and body parts that ached that I hadn’t even known existed. I must have swallowed half a bottle of laxatives and a gallon of water that day, but my digestive tract was at a standstill so I was awake all night in excruciating pain. I was so glad to go home, but when I got there, my cat, Calypso, had disappeared. I was told “a nice lady adopted the cats” while I was at the sleepover. Litter boxes were dangerous, apparently, for someone with a suppressed immune system.

Cancer felt like a series of doors slamming shut while a single, new and mysterious door opened. But the person who stepped through it wasn’t me anymore. My dad says it’s like a switch flipped, and I didn’t care about grades or college or whatever I was “supposed” to care about anymore. “It’s like you went ‘Fuck it. None of that shit matters, and I don’t care what anyone says.’ ”

But like I said, it’s hard for me to remember. Chunks of my life are missing. People from middle school and high school tell me stories of things we did together… but it’s like I was never there for some of those things. Like chemo erased part of me. The doctors didn’t mention “minor amnesia” as a side effect, though. They said if the cancer didn’t return, I just needed to watch for fertility issues and secondary cancers.

I think the thing I miss most is my old brain. I’d always been a daydreamy kinda kid, and I never was great at keeping my room clean, but I had a great memory and a fast mind. I could usually transform my thoughts into action. But now? The aware, creative, intelligent part of me feels like it’s still in there, but it’s like there’s a disconnect and a delay between that part of me and all input and output. Like someone knocked down a steel bridge and replaced it with a dollar store version made of frayed rope. For sixteen years, the “aware” part of me has felt trapped… I know what I want to do and what I need to do, but no matter how hard I try, my performance is consistently inconsistent.

When you get chemotherapy, it can cause something cancer patients call “chemobrain”. It’s exactly like the executive functioning problems you get with ADHD. I know, because I walked around in that “fog” for fifteen years and blamed myself for my “laziness” until coming across books that described what it feels like to be an adult woman with ADHD. The first time I took a small dose of ADHD medication, I cooked a healthy breakfast for myself, cleaned up all my pans and dishes, and ate it all without an ounce of anxiety. I had one thought at a time. Sensory input and thoughts weren’t flooding my brain, distracting me, making me worry (rightly) that I’d screw up my meal or forget to do something else that was important. I didn’t even have to think about the steps I was taking, when normally, my mind would be trying to keep track, asking… “What comes next again?”

After I was done with my meal, I just sat at the table and sobbed. I had no idea it was supposed to be that easy or that so many of the “simple” things we do in daily life were a struggle for me. I thought everyone struggled, but that they just tried harder than I did. And everyone else had agreed with me. If I had tried harder, I would have been able to memorize my lyrics and dance steps better when I was in Los Angeles, pursuing a singing career. If I had tried harder, I would have done the work necessary to complete college… or at least settle on one major. If only I had tried harder, I would have keep my room clean, respected my roommates better, juggled a house, kid, marriage, and business better, and wrote all the epic, lengthy stories in my head much faster.

For nearly seven years after chemo, I had an undiagnosed autoimmune disease that can also cause “brain fog”, but every doctor I saw acted like I was crazy, depressed, and possibly a hypochondriac. After I got shingles and my hair started turning white at age 22, I diagnosed myfuckingSELF and arrived at my yearly oncology check-up armed with a giant stack of research, a bag full of over-the-counter thyroid supplements, and a demand that my thyroid be tested again and that real medication be prescribed to me. I got my meds, and it turned out my diagnosis was correct.

I finally found the courage to join some cancer survivor groups recently, and I learned that others like me have similar problems… thyroid issues, autoimmune diseases, long-term fatigue, and chemobrain that never goes away. And there are other possible long-term complications, of course, like heart problems and secondary cancers. Young adult cancer survivors are an at-risk group that hasn’t been followed properly, so I’m in uncharted territory. Unfortunately, I’m also the one steering the ship.

I’ve had to help myself since chemo, carrying around research to convince doctors I know what I’m talking about, that the fact that I’m “too young to have x” doesn’t matter, and to convince them to order the tests I think I need. Every new doctor has to be assessed… will they respect what I know? Are they open-minded? Do they want to always keep learning and be a partner in my healthcare? Or are they going to shut me down because ‘they know what I need better than I do’ and misread my sometimes ADHD-like behavior for “stupid”, instead of merely “scattered”? Good doctors can be hard to find, but when I find one, I try to keep them.

I use the brain I have to do research, read studies, and follow breadcrumbs, but it’s exhausting and takes a lot of time away from other things I want to be doing. I want to enjoy this life that I have while I have it. I don’t want to have survived cancer only to spend all my time fighting to “fix” or prevent the long-term side effects. I want to write fiction, record music, spend time with my family, and enjoy the fact that I’m alive… that I’m still here! Are there better times ahead?

(That’s right, Mmm-hmm. Does a better world await… in this life?)

There’s no happy, positive conclusion to this post. And there’s no surprise twist at the end… Unless you’re surprised that an Autumn Kalquist story ends in a cliffhanger. 😉
My story continues for as long as I’m breathing. And that’s all that I know for sure.

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