What It's Like to Get Cancer As a Teenager
Your doctor thinks it's pneumonia, but no, it's cancer.
Rob Rufus's life was on a real upswing. He was 17 years old, dating a cheerleader, and his band, the Blacklist Royals, which he founded with his twin brother, had just been invited to play a national tour. That's when he got cancer—and was told not to expect to survive beyond his teens. Die Young With Me, which comes out this month, is Rufus's evocative account of what it's like to go through everyone's worst nightmare, while his twin brother goes on living the life he'd envisioned for himself. Rufus's writing describes the medical rabbit hole we all dread falling into in a style so candid you can imagine yourself tumbling in along with him.—Kate Lowenstein
Dad had never taken me to the doctor before. Not once. To him, checkups fell under the same category as guidance counselors, shopping, and church—i.e., Shit Your Mother Deals With—so our ride to the hospital felt a bit strange for us both.
Dr. Hallbeck's office was in a part of the hospital that I'd never been to before. The move felt like progress. Her waiting room was filledwith women wearing suspicious looks.
When the nurse called my turn, Dad looked over at me.
"Coming?" I asked.
"I guess your mother would kick my ass if I didn't, huh?"
He put down his magazine and followed me back.
I recognized Dr. Hallbeck once I saw her. Middle-aged, graying hair but still pretty-ish, if not for her glasses (they were even bigger than mine). She was the first doctor who showed any genuine concern—and not just forme. She was alarmed that other doctors in her hospital had been so flippantwith my treatment.
"Your lungs sound horrible," she said, with her stethoscope pressed against me. "I am going to order that chest X-ray right now. If this is pneumonia, it is a severe case. If the X-ray shows what I think it will, we need to start treating it right away."
When we left the exam room, Dad and I both shook her hand.
"Finally, we're getting somewhere," Dad said.
"Yeah, and it only took them four months."
He patted my back and chuckled. We went looking for theX-ray lab.
* * *
X-ray was located in the basement of the hospital, with all the other radioactive machines. There were no magazines to read, just a waiting room made of the hard plastic chairs you'd expect to find at the DMV.Everything about it was utilitarian. It was clear that unless patients needed to be on this floor, they weren't.
Another nurse called me back. This time I asked Dad to wait.
The radiology lab was dark, and messier than I would have expected.
There was a long white table in the middle of the room, and a whiteboard in the corner. The tech told me to remove my shirt and glasses and stand against the board. I felt embarrassed to be shirtless in front of her. My chest and shoulders drooped like a melting vanilla ice cream cone. She told me to straighten my back, then to clasp my hands and raise them over my head.
I could hear the X-ray machine power up. A light shone on my pale stomach. I thought I might feel something, but I didn't.
"Breathe in," the tech said. "Good. Now hold your breath, holllddddd . . ."
The machine made a soft sound. She told me I could drop my hands and gave me a minute to catch my breath. Then she told me to turn to my right side and repeat. Then the left side—and that was it. I was done.
"That was fast," Dad said when I returned to the waiting room. "How'd it go?"
"Fine, I guess. They told me to come out here and wait."
"Well, big boy—let's wait."
* * *
We sat there for hours.
Other patients came down periodically, sitting near us until they were called back for this scan or that one. We never saw them afterward. I wondered if they'd forgotten about us. I wondered if we should just leave.
I stood up and headed down the hall to try to figure out what the holdup was. The entire floor seemed deserted. I held on to the wall and panted down to the corner of the hallway.
I saw an old man outside one of the rooms. He was lying flat in a hospital bed, covered in a thin white sheet. He wasn't moving. A nurse must have sat him there, the way you would an empty grocery cart. Behind the double doors, machines growled.
I left the man and walked slowly back.
"Any luck?" Dad asked. I sat down beside him and wheezed.
"Nope . . . you . . . ?"
"A few nurses walked by. I stopped them, but they wouldn't talk. All they said was we need to keep waiting."
"But we've been here all day."
"I know, I know," he said, leaning back into his chair. He'd removed his blazer, and the collar around his neck was now open.
Thirty minutes later, two nurses walked past us. Dad waved them down. Hesitantly, they stopped. He approached them. When he spoke, they didn't meet his eyes.
"The name is Rufus. We had an X-ray done hours ago. I just wanted to see if we can get out of here, or..."
I noticed one of the nurses, the younger one, staring at me.
Our eyes met—then all of a sudden, her lip trembled. She looked like she was crying. She took off down the hall. Dad looked at the other nurse.
"We are truly sorry for the wait," she said flatly, ignoring the other nurse's outburst. "The doctor will be with you in just a moment.Please do not leave until you have seen the doctor."
"Sure. Thanks," Dad mumbled, the color draining from his face.
He walked back over and sat down.
"Weird, man," I said.
He didn't answer me.
He just stared at the door of the X-ray lab.
A few moments later, the same nurse motioned us toward the lab.
We followed her into the X-ray lab, and then through a side door into a room with control panels and computer monitors. Then she ushered us into a room beyond the room.
It was clear that this room was not intended to receive guests. It was cluttered with papers, X-ray film, and coffee cups. A large desk ran along the far wall—a man sat behind it. The stacks of paper on the desk nearly hid him from view. He pushed a few folders out of his way.
He introduced himself as Dr. Houston, the hospital's chief radiologist. We sat across from him, anxious. Why were we back here? I waited for some kind of news. My leg was twitching.
"We reviewed your X-rays. Now, initially we were looking for signs of pneumonia. What we found was... different."
Dr. Houston clicked a button, and the far wall lit up like a bug zapper.
X-rays of what must have been my body were stuck to the lit-up wall. I looked inside myself—I saw a dark shadow in the middle of my body.
Dr. Houston was still talking. "What we seemed to have found is some sort of mass in the middle of the chest cavity. This explains the shortness of breath, and the coughing as well."
"Mass?" I said. "What does that even mean?"
Dr. Houston massaged his temples.
"Well, we won't know until we've done more tests. But from what I see here, and considering your age and speaking freely, my initial reaction would be that it may be a form of lymphoma."
Dad moved to the edge of his chair.
"Speak fucking English," he snapped.
Dr. Houston cleared his throat.
"I shouldn't make any assumptions until we run more tests."
"Lymphoma?" I said. "Is that, like, leukemia?"
"Sort of. The two diseases are often paired."
"Wait," Dad interrupted. "Are you saying this is cancer?"
Dr. Houston didn't answer. He just sighed and stared at his desk, as if he were searching for words in all that clutter.
"Is this—mass—inside of me like a tumor or something?"
The doctor rubbed his eyes with the sleeve of his jacket.Then he looked me square in the eye.
"We don't know, Robert. But we will find out—fast. You are very lucky you got this X-ray. Your lungs look on the verge of collapsing."
"Does my son have cancer?" Dad said. His voice was on edge.
I'd never heard him sound that way. Nervous. Scared.
"Mr. Rufus . . ." Sigh. Pause."I am sorry. Yes, Lymphoma is a type of cancer that is common in children and young adults. As you see from the X-rays this mass is localized to . . ."
His words drifted farther away from me.
They continued to talk, Dr. Houston pointing at X-rays. I felt weightless—I was sinking in on myself. I felt blank. I thought of all those machines outside, the white noise of their engines—blank and empty—calling to me. I sat there expressionless. I slipped into the hum.
They didn't want me to leave the hospital, but there was no real reason for me to stay—it was almost eight now, and most of the staff was already gone. So they finally told us to meet back at Dr. Hallbeck's office first thing in the morning, so she could take us to Oncology.
I didn't care, either way. I existed on a calm plain of shock. I had the night to "get things in order," as if that was an obvious process.
On the drive home, neither of us knew what to say.
"You hungry?" Dad finally asked.
"What'll it be, big boy? Anything you want."
What I wanted didn't seem to be something that came in a takeout container so I said pizza would be okay.
We got to the house around nine. The delivery guy fromGino's was standing like a clown in his yellow-red uniform. He held a stack of pizza boxes that reached over his head. Dad looked at the food like he'd forgotten he ordered it.
"Right. Hold on a second, buddy." He pulled out all the cash in his wallet and handed it to the delivery guy.
"For real?" the pizza guy asked. Dad nodded.
"Just help me carry this shit inside."
We had seven pizzas, three packs of garlic bread, and two two-liters—but neither of us knew what we should say to Nat. He stood before the stack of boxes, confused.
Dad tried to explain what the doctor had said, leaving out the words tumor and cancer. Dad called it "a thing with my lymph nodes," and told him that I was going back in the morning.
I couldn't listen anymore. My hands were getting shaky.
I threw five slices onto my plate and went down to the basement.I didn't know where else to go.
I sat down there alone, eating pizza on the stairs, trying to get my thoughts together. Through the door, I could still hear Dad and Nat talking. I didn't know anything about cancer—except that lots of people died from it. I knew that it was BAD.
People with cancer get chemo, lose their hair, puke—I had the base-level knowledge that any American TV viewer has, but that was it.
I didn't know what cancer really meant.
It was like some secret disease; people talk about cancer treatment, but they don't talk about the cancer. Does the cancer hurt? Will I feel it inside of me? How does it kill?
The basement door opened. My brother slowly came down the stairs.
"Hey," he said, sitting down beside me.
"Well, this is fucked up."
"Yeah. I know."
"You think they'll make you get chemo, or something?"
I shook my head. No one knew anything yet. Nat stood up and began pacing around the room, drumming on his thighs.
"Well, look, even if you do have to get chemo—fuck it. You know? I mean, you can't be that sick—we just played a fucking show, man!"
"Yeah. I guess so."
"See! So even if you get chemo, I bet it won't be that big of a deal. Ya know? Shit, you'll get to miss a ton of school and maybe you'll even lose weight. By the time Warped Tour rolls around, your hair will be grown back and you'll be fucking fine."
The TOUR—I hadn't even thought about that.
"Maybe. I hope so."
I stood up from the stairs. Nat walked closer to me.
"You're going to be fucking fine, dude. This is all going to be fucking fine."
I nodded. "Yeah. Okay. It'll be fine."
The basement door opened again. Dad stood at the top of the stairs, looking down at the two of us.
"Your mother is on the phone," he said, "she asked if she could talk to you."
I walked up the stairs and took the receiver. I was breathing heavily. Mom wasn't crying, which was good. If she had been crying, I think I would have finally lost it.
She said that she was coming home.
* * *
It was ten thirty. Ali was still at work. I knew I had to tell her, or at least tell her something.
I looked up the number for the Route 60 Frostop in the yellow pages. Some flunky answered, and I told him to put Ali on. I told him it was an emergency.
She took the receiver out into the parking lot. I imagined her there, in the glow of the streetlights, staring at the empty space where I should have been parked.
I surprised myself by saying it out loud—they think I have cancer.
Ali screamed and screamed. I tried to calm her down, I told her it would all be fine. I told her the same things Nat told me—but she kept crying, apologizing for nothing in slurred tones. I felt the tremor in her voice when she spoke.
Eventually, she ran out of tears. She grew silent. We just sat there on the line, me in my bedroom, and her in that lonely parking lot, stained with puddles of tears for me.
"I love you I love you I love you I love you," she swore.
"I know," I said, "I know. Everything is cool—I promise. Calm down. I'll call you after my appointment tomorrow. It might not be a big deal—okay? The appointment is way early, so I'll probably just see you back at school."
"Okay. It might not be a big deal. I'll see you at school."
I don't know if either of us really believed it.
I heard Mom's car pull in around three in the morning. I'd spent the last few hours on AOL, e-mailing Paul and the few other friends thatI had. I told them as little as possible. After Ali, I just couldn't make another phone call.
Mom and Dad were at the computer now, in the little home office across the hall from my bedroom. Through the crack in my door I could hear them, Dad telling and retelling the events at the hospital. He was cussing a lot. I heard the office door slam shut.
I lay in my bed, shaking. I'd never seen Dad upset like that.
What did they just read on the computer? What did they just see?
There was no chance for sleep.
I got out of bed, put on my glasses, went to my desk, and switched on the lamp. I sat down and unzipped my backpack on the floor beside me. Whatever happened tomorrow, I knew I'd probably miss a few more weeks of school.I figured I should catch up on as much homework as I could—I needed to occupy my mind.
I decided to work on my English essay, the one about punk.I'd pretty much finished it, but I needed to proof it one last time. Miss Ray was the only cool teacher I had, anyway, so maybe she'd appreciate the effort and not load me with work while I was sick.
The title of my essay was "Punk Rock Elite." The first page touched on the history of punk—from the MC5 and the Stooges, then on to the Ramones, Sex Pistols, and the Clash. I talked about the second and third waves of punk (which is when I was introduced to it) and the way the music had changed.
But the second half of the essay—the part that I had been the most proud of—read differently to me now.
As punk rock became a successful music genre, corporations, record labels, advertising agencies, and various other sleaze balls attempted to re-create it—musically and visually—to be produced and marketed in a more profitable environment.
On many levels, this attempt was a success.
But no matter how authentic the watered-down, family-friendly version of corporate punk seems, there will always be an element lacking.
Because punk rock isn't about how fast you play, or how big your hair is; it's about attitude—a screw-you attitude that can not be manufactured, or thought up in a boardroom.
Punk is an attitude that goes beyond rebelling against disco or political parties—punk rock rebels against everything! And, oddly, I find this comforting.
Punk makes me feel like I can do anything, because the wallsI see around me aren't real; religion, politics, standards, status quos—punk rock takes the power away from all those preordained establishments. It spits in the face of everything, even death.
Like the Dead Boys once sang:
Ain't it fun
When ya know that you're gonna die young?
It's such fun . . .
I mean, can you imagine Avril Lavigne singing that?
That's the difference between punk rock and everything else—punk rock is a way of life.
I stared at my own words. I felt disgusted.
What a bunch of bullshit, I thought. Dying young—from what? Self-destructive, self-obsessed crap? Fuck that—it doesn't count if you never see it coming.
Did any of these young punk rockers have cancer? Did any of them die slow, in a hospital gown, not a leather jacket? If they'd seen it coming, would they still have seen such romance in it? Would dying young still seem so cool?
I threw my pencil at the wall and heard it crack in the dark. I stood up and switched off the desk lamp. I was crying.
"Ain't it fun . . ." I said softly.
I cried alone, until sleep pitied me enough to show itself at last.
Copyright © 2016 by Robert H. Rufus. From the forthcoming book DIE YOUNG WITH ME to be published by Touchstone, a Division of Simon & Schuster, Inc. Printed by permission.
Photo by Emily Beaver