6 Disturbing Realities of Surviving Childhood Cancer
Sometimes we get fan mail accusing us of purposefully trying to find the most depressing subjects in the universe to write about. That's ridiculous, of course, and discussing the matter any further would only delay your reading of this article about a small child who was stricken with cancer.
Don't worry -- the kid survived and is now a successful, living adult. Nate Handley was seven when he was diagnosed with acute lymphoblastic leukemia, and he spent the next three and a half years being treated for his illness. And while he confirmed for us that childhood cancer does indeed suck quite a bit, it's often not for the reasons you might expect ...
I Knew I Might Be Getting (Fatal) Placebos Instead Of Actual Medicine
When I was diagnosed in 1996 at age seven, my parents' insurance company declared my cancer a preexisting condition, presumably because it technically had to exist before anyone knew about it. My parents argued against that incredibly shady position, and eventually got insurance to cover my treatment. But while they were being forced to waste time appealing such an obviously bullshit decision, they still had to, you know, keep me alive. So I was placed in an experimental study where doctors shot me up with all sorts of goop to see if any of it worked. But here's the thing: Half of the patients in the study were being given placebos, and we had no way of knowing which half.
Apparently, insurance companies are allowed to give Batman villain survival odds without any blowback.
Sometimes that's the only way to do it -- someone has to serve as the control group. I only found out I was getting legitimate medication after I went through several roommates who kept getting sent to nice farms upstate. That's not a joke.
Nurses treat you differently when you're a coin flip away from falling over dead. That is to say, they try really hard not to make any sort of emotional connection with you whatsoever, because if some nurse formed a friendship with me, only for me to selfishly die two weeks later, that nurse would be super sad. It's perfectly understandable, but cold hard logic doesn't offer much comfort to a kid who's being treated like a captive alien. Some do take the risk, though -- I had one nurse who was incredibly supportive and is still in touch with me today. Another woman ran the playroom and loved playing with every kid who came through her door, all while knowing that some of them would never outgrow her toys.
Being asked to wait a week to unpack doesn't exactly inspire much confidence.
That said, the emotional stress was secondary to the excruciating side effects of the medication. If you've never had a needle jammed into the back of your knee, go ahead and cross it off your bucket list, because that is an ordeal that precisely no one needs. At first it only stings a little, but it burns for hours afterwards. Luckily, they stopped using that medication after a while because they discovered it was utterly ineffective.
Another medication made me vomit more than if I'd shotgunned an entire handle of vodka, so the doctors had to pump my stomach to get it out of my system. One medication closed my throat to the point where I couldn't eat solid foods and had to go on a completely liquid diet. One gave me shingles three separate times. One turned me into a hyperactive monster. Another made me hallucinate the Muppets leering in through my living room window and threatening to eat me. At that point, I wouldn't be surprised if they had a serious discussion about giving me the mother lode of hard drugs.
"I mean, heroin can't make his cancer worse, right?"
And if the nurses were cold, the doctors were worse. One treated me like a lab lesson, parading in a horde of medical students to observe me while barely acknowledging my existence as anything other than a medical curiosity. Another kicked off every day with, "Oh, I see you're not dead yet!" I get that he was trying to make me laugh, but at that point I still didn't know if I was on placebos. He was otherwise an excellent doctor, it's just that ...
No One Knows How To Make You Feel Like A Normal Kid
I spent three summers going to a special summer program that I have since dubbed Cancer Camp. It was supposed to be fun, but was also meant to give us a chance to experience a real-life environment. Healthy kids were invited too, to enhance the whole "normal childhood" feeling they were trying to give us. But the normal kids needed to have a normal-kid time as well -- you couldn't have a bunch of grade schoolers go to summer camp and then not let them injure themselves outside in the name of fun. So they got to do all sorts of cool activities that we cancer patients couldn't. Telling a nine-year-old that he's going to a camp that contains an obstacle course and then telling him that he's too sick to participate is like taking him to an amusement park and then making him watch as you burn all of the rides to the ground.
So I got to sit and make animal masks in the arts and crafts hut while listening to other kids having the time of their lives at the shooting range next door. Dr. Hilarious from earlier once joked that the camp was going to have to move because they ran out of space to dig graves, because some people don't know when to fucking stop.
"Let's go on a snipe hunt, except instead of snipes, we hunt for a way
for you to live to see prom!" -- Counselor Dickhead
They were well aware that camp wasn't everything we dreamed it would be, so one year they promised us exactly what I wanted -- we were going to roast marshmallows over a fire and sing camp songs. Except we couldn't have marshmallows, because some of the kids were on medication that would react badly to sugar. And we couldn't have a fire, because some of the kids had medical equipment that could be damaged. And we couldn't sing, because two of the kids were deaf. So we sat out under the stars on a beautiful night and, I shit you not, watched a VHS tape of a fire. A night at Camp Crystal Lake would've been more fun. Ironically, it did manage to make me a feel like a normal kid, because my brother and all the other healthy campers had to put up with that joyless activity right along with us.
Then the bears came.
I couldn't go to birthday parties either, so my parents talked to the parents of a friend and together they hosted a fake party for him. It was like a covert operation, right down to carefully selecting and medically clearing the guests. We ate cake, exchanged presents, pinned the tail on the donkey, had our fortunes told by a blind Ukrainian woman -- all the things you'd expect at a typical kids' birthday party. I had an absolute blast, and I didn't find out the truth until many years later. I was shocked and upset at first, but then I realized that I'd really loved the party, and it had gotten me out of a dark period in my life. It also explained why I was never invited to that kid's birthday again.
It turns out that lying to and manipulating sick children can make them feel a lot better than pandering to them. So ... lesson learned, I guess? But that just brings me to one of the most unexpected effects of growing up as a chronically sick kid ...
You Can Get Away With Anything (And That's Bad For You)
In the beginning, I didn't understand the implications of cancer. I only knew I was sick -- what first grader understands their own mortality? But my parents knew there was a very real possibility that I could die, so they spoiled me while they could. Before cancer, the rule was half an hour of TV. After the diagnosis, I could watch all I wanted. Sometimes I didn't want to take my medication, but I would become more than willing when the side effect was "new action figure." My parents caved in to my every demand, which is pretty much the worst thing you can do to a sick kid, because even kids with cancer are still kids. With nothing but the best intentions, my parents turned me into a brat, which is another word for "a tiny asshole."
"You got me a puppy? I believe I said 'dinosaur.' Make it happen. I want results, not excuses."
For example: Once I was taking a bath, and decided for whatever reason that it would be hilarious if I pretended I was dead. After I was in the bathroom for an hour, my worried mom came in to check on me and saw me lying completely still, bringing to life the nightmare she had been having every night since I was diagnosed. She freaked right the hell out and called an ambulance, and only then did I sit up and start laughing manically.
I doubt I would have done something like that if I hadn't been brought up in an environment where my parents indulged my every whim, but cancer let me get away with anything short of murder.
"Oh alright, but only if you behave at the hospital."
That parental attitude is perfectly understandable, of course -- they are spending what could very well be their final months with their child. They're basically already grieving. Who wants any of those final memories to be unpleasant bouts of yelling and crying?
But the thing is, those wound up not being my final months at all. I survived, and while I will be the first to admit that not dying is awesome, we all had to adjust to my survival. I spent three and a half years living like I might die at any moment, which really hindered my personal development. Going from getting everything I wanted like the Prince of Cancer to being treated like a normal kid left me more confused than my attempt to understand the Zelda timeline. I spent years thinking that life worked a certain way, and then had to very quickly learn what it's really like. Basically, it was like Blast From the Past and/or The Unbreakable Kimmy Schmidt, only with cancer and none of the lighthearted whimsy.
"So wait, 'Gimme one of everything' doesn't work anymore?!"
In my first year after treatment, I watched my grades slip and suddenly learned what rejection felt like. I had to do homework for the first time and I hated it, so I'd make up medical excuses to get out of it, but my teacher eventually figured out I was lying. I had to shift to not being able to do whatever I wanted anymore, and to do that I had to cram three years of maturation into a few months.
And then there's how the way the other kids treat you changes ...
"Cancer Kid" Becomes Your Identity
I went back to school in second grade while still undergoing treatment, and at first it was great. Everyone wanted to hang out with me, I had my own bathroom, all on top of the fact that nobody wanted to make me work too hard because I might not live through the year. But that all changed when my treatment wound down during the fourth grade.
I stopped being interesting to most other kids once I no longer had the potential to get a memorial award or a weird stone bench named after me. They never wanted to hang out with me because they actually thought I was fun -- the attitude had always been "Let's hang out with this poor bastard because he might die tomorrow!" Once it became clear that I would live to see graduation, nobody cared anymore. It wasn't malicious; I simply ceased to exist.
You're in a lot fewer group photos when they aren't likely to get a full page in the yearbook anymore.
While cancer made kids at school like me more, it turned my brother against me faster than if I had woken him with a punch to the dick at three in the morning to show him that I'd thrown his Xbox into a dumpster fire. He hated the fact that I had cancer, because he got pawned off onto family friends during hospital visits. I was getting all the love and attention because I was sick, but he thought he should be getting it because he could do everything I couldn't. He had to sit and watch me get spoiled rotten while he had to earn his toys with the sweat off his brow (or however you earn toys when you are a child).
You load 16 tons, What do you get?
A cheap robot that turns to a jet
Sure, now that we're adults, he understands that our parents needed him to make sacrifices, but when you're 10 years old, all that stuff comes off as, "They love him more than they love me." He didn't understand what I was going through any more than I did. Death was a hazy, abstract concept to us, like quantum physics or people who watch The Big Bang Theory. My brother and I are cool now, but there's a common theme between him and my former school chums -- how my cancer changed their lives was all they had the emotional maturity to comprehend.
People Don't Know How To Treat You As An Adult, Either
I generally don't walk up to people and introduce myself as Nate the Former Cancer Patient unless the potential for hilarity absolutely demands it, but if the subject comes up, I try to be open and lighthearted about it. My illness isn't who I am -- it's just a shitty thing I had to deal with, and now that I'm free of it (mostly), I can make fun of it. So it kind of hurts when I crack a joke about it and someone gives me an "Aww, poor you!" response. That's like if you were held hostage for three years by a supervillain, and then you suplexed that supervillain into a volcano, and all anyone wants to say is, "Oh, I'm sorry you were kidnapped, that must've been awful." I want to talk about the suplex.
Hey, I beat cancer, I get to pick the analogies.
They mean well, of course, but it comes out wrong. The same goes for people who try to use my own cancer to inspire me, as though I'd somehow forgotten I'd had it. I've lost track of the number of times I've heard "If you survived cancer, you can survive X", where X is something totally unrelated, like getting into my college of choice. I appreciate the motivational attempt, but my application form didn't have a "How many cancers have you survived?" question. If anything, it raises the price of failure. "You survived cancer as a kid, but you can't even get into college? I suppose you're going to tell me you can't jump canyons on a motorcycle, either."
"If you survived cancer, you can get in there and rescue my grand piano."
But those are both vastly preferable to people I've dubbed Cancer Truthers, a select group who don't believe I had cancer. A guy I vaguely knew at school borrowed a cigarette from me, and the topic came up as we smoked. He accused me of making it up, sagely noting that no one with cancer has ever smoked, so I showed him my scar from my portacath (it's a little thing they put in people who constantly have to have blood drawn and get injections). He still called bullshit, claiming that if I had cancer, I could prove it by showing him the hair I kept in a box, because he was apparently under the assumption that cancer survivors carry their hair around in a box at all times. It was probably in some fucking movie.
You're not helping, Getty.
The Medication Side Effects Can Last Forever
People assume that when cancer is gone, it's gone. That's technically true, but the side effects from the treatment and medication stay for a very long time -- sometimes permanently. It turns out that pumping children full of experimental drug cocktails (often ones designed to be so toxic that the tumor gives up and leaves in disgust) can cause lasting damage.
My brain doesn't produce enough serotonin, a chemical which, among other things, is responsible for triggering feelings of happiness. Combining that with insomnia has given me some long nights where I feel like it would have been better if I had died. I was once half-convinced that my whole life had been an elaborate fever dream by my childhood self as I lay wasting away in the hospital. This wasn't quite as much fun as that time I dreamed I was a giant banana that had to escape an ice cream store.
"Time to split."
Depression is one of the reasons I smoke, by the way. It helps fight the effects, and I'm not terribly concerned about my lungs -- my organs are likely going to start shutting down once I'm around 40, and I'm probably not going to live past age 50. Them's the breaks. That's not to say I'm going to start chain-smoking two packs a day and pouring mimosas on my Cheerios, but I'm not exactly saving myself for old age.
I started passing kidney stones when I was 12, and I also had vertigo for a while, just to make puberty even more uncomfortable (having to keel over in front of my classmates right after giving a big presentation is every middle schooler's dream). Then there's the fact that cancer screws with treatments for everything. If I bruise my leg, it has to be tested, because who knows if it's the first sign of my cancer returning?
You always hold out hope for superpowers, but no dice.
Don't get me wrong. Despite all of this nonsense, I'm happy with my life -- I'm pursuing my artistic career, I have an amazing fiancee, and I'm, you know, not dead from cancer. But it's important to realize that kids don't just shrug it off and move on with their lives like it was a really nasty case of chicken pox. Those stories you see in movies and on the news about kids beating cancer are still inspirational, but remember that they've got a long road ahead. Or a short road, depending on how you look at it.
If you enjoyed Nate's story, he'd be thrilled if you considered a donation to the Children's Cancer Fund of New Mexico.
For more insider perspectives, check out 6 Surprising Ways Life Looks Different With Terminal Disease and 5 Awful Lessons I Learned Living With a Mystery Illness.
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