by Rob Rufus
For instance—I was finally getting my appetite back. In fact, now that I was home I felt hungry all the time. But food tasted terrible. Fucking inedible.
It was insane—the drugs had ruined my taste buds.
Now, anything sweet tasted sickly syrupy. Anything dairy tasted spoiled. Everything good tasted bad. My mouth felt dirty all the time.
I had two separate chemical washes to prevent the mouth sores that are common in association with cancer treatments. I swished them around my mouth three times a day—they had the aftertaste of a hospital room.
* * *
After a few days back, I wasn’t puking as much as I did while receiving chemo. But nausea started appearing in other forms. Mainly debilitating diarrhea. Just when I’d thought life couldn’t get more disgusting, it did—the strange sights and smells that came from my body were like something from the refinery that sat on the outside of town.
I was stuck in the bathroom for hours on end, my stomach cramped into knots no medicine could untie. Sometimes, I was so full of this chemical waste I’d be puking and shitting at once, an act that defied nature and everything good and reasonable in this gross, fucked-up world.
* * *
Even more constant than the nausea was a strange tingling in my hands and feet—it was an odd, constant sting, as if my limbs were asleep. The constant tingling made it hard for me to grip. I dropped glasses and plates, and sometimes my hand slipped while opening doors.
Mom called Stacey about it. She said it was likely nerve damage from the bleomycin. To dull the effects, she prescribed me three more pills.
* * *
Although I felt more coherent than I had in the hospital, I started experiencing what is referred to as “chemo brain” (the stupid name makes light of how shitty it really is). My thoughts kept getting scrambled up, like my circuits weren’t firing in time. I’d forget what I was saying mid-sentence, and would sometimes switch thoughts and conversations seamlessly, and without reason.
* * *
The toxicity of the chemotherapy drugs also caused tinnitus, a constant ringing in my ears—a swirling, steady hum, as if I was living inside a seashell.
I remember the first time I noticed it. I was standing on the porch, talking to Paul—but I couldn’t make out what he was saying. My ears were ringing as if I’d just left the front row of a loud concert.
I moved closer. I asked Paul to repeat himself. But all I could concentrate on was the hummmmmmmmm.
The tinnitus started driving me crazy. It was fucking horrible. Even with the drugs and exhaustion, the ringing in my ears made it hard to sleep. It became even harder to concentrate. Sometimes I could barely think.
The only way I could ignore the ringing in my ears was to concentrate on something else. It had to be something that I could set on a loop—a constant to negate a constant. It had to be something that could be in my every thought without driving me fucking insane.
It had to be music.
So I played music in my head constantly. It was usually just a verse, or a single riff dubbed over the hum and set on repeat. I sectioned my consciousness into two parts—one of them inward and constant, the other struggling to keep a grasp on the world around me.
I pulled it off pretty good, as long as you didn’t mind that I began every conversation with the words “Um . . . huh?”
* * *
There were pills for side effects and pills for breathing. There were pills that seemed just for the sake of it. Some pills were so large, Mom had to cut them up with a steak knife.
I took them all diligently—give me ALL the pills—even as my regimen stretched to twenty-seven different pills a day. But none of them helped relieve the ringing in my ears, the exhaustion in my bones, or the sunspots on my brain.
I just swallowed them down and wished for the best.
3
After a week at home, I had to go all the way to Columbus just to get my blood drawn. It sounds ridiculous, but after my experience at the hospital in Huntington, Dr. Ranalli didn’t want them involved in my care.
Going back to Children’s Hospital was surprisingly anticlimactic. I didn’t see Dr. Ranalli or Stacey. I didn’t even have to go to the cancer ward.
I just had to see a nurse, get some blood drawn, and get slapped with a Batman Band-Aid. We were only there about forty minutes, and then we were back on the road for the long drive home.
It was the drive that bothered me.
The sky was gray. The barren landscape was a drag—it stretched out three hours long. Such a long drive for such a short trip.
The time seemed wasted.
I only had a week left. A week at home, and then I’d be back on this road, on my way to have poison pumped back in my veins.
* * *
I got a letter in the mail from my cousin Anthony, postmarked from Richmond, Virginia.
I hadn’t heard from him in years. I tore the envelope open. There was a card inside with a cartoon cat wearing sunglasses. Stay Cool, Cat, the cartoon said. I rolled my eyes and opened the card.
Hey dude, hope you start feeling better soon. Heard you guys are going on tour! HELL YES! Living the fucking dream, dude! Do EVERYTHING that I would do. I know you will. You got that fucked-up Rufus Blood running through those veins.
STAY UP—Anthony.
It made me a little sad. He talked about the tour like I was still going. But whatever, I had to smile. He knew our band was on the tour, didn’t he?
He knew that we weren’t posers, after all.
* * *
That same day, Nat brought home the term paper I’d written about punk rock. There was an A+ and a smiley face drawn in the corner. On the back of the paper, Miss Ray had written a long note—she wrote a lot of nice things, things that most teachers wouldn’t say to some shy kid who sat in the back and never raised his hand.
I remember that note so well, because I didn’t hear from any of my other teachers ever again.
The school year was ending in about a month, so our principal told my parents that the school would pass me for the semester with whatever my GPA was before I “left.” All of my teachers had agreed to the idea, except one. My first-period biology teacher said that if I didn’t do the final project—dissecting a pig—it would constitute an automatic F.
The thought of a science teacher being so flippant about a student’s cancer diagnosis was something I couldn’t compute. What did he care if I dissected a dead pig? It wouldn’t affect him either way. Was the old bastard that jaded on life?
Fuck it, I thought, my hands are so numb I can barely hold a fork. How am I supposed to cut the guts out of a dead animal? If he wants to fail me for being sick, let him fail me.
So he did.
4
I hadn’t had any “alone time” with Ali ever since I got home from the hospital. Anytime I wanted to kiss her, I became self-conscious about the sores in my mouth. And I couldn’t imagine that she’d want to kiss me in this state.
I knew that I looked different—bald, gross, sick. Some days, I felt like it wasn’t so bad. Most days, my reflection made me feel like I was looking at a walking corpse.
But no matter how bad I felt—physically or mentally—I still wanted her.
She was dressing more punk every day. She was caking on the eyeliner. As the temperature rose, her outfits shrank. Apparently, my libido was the only thing strong enough to survive the effects of the cancer treatments.
So when Ali’s parents left town on the Friday before I went back to Columbus, I figured it was my chance to get her alone. But when I called her, she told me that she was having a small party—just a few friends. She asked me if I wanted to come. Normally, I would have said no. But my chances of getting laid were better with a house full of friends than they were with a house full of parents, soooooo—I told her I’d see her there.
>
Mom and Dad made me promise that I wouldn’t drive alone. They were worried I would get too tired. I asked Nat to go, but he had plans with Ashley. So I called Paul—he told me to meet him outside in ten.
I tossed my nighttime dose of pills into the little metal pill carrier that Mom bought me. I stuffed it into my pocket, beside my breath mints.
* * *
When Paul and I pulled off Forrest Road and into Ali’s driveway, there were nearly a dozen cars parked off the shoulder. Paul pulled his mom’s rusty Toyota behind a shiny black truck.
The gravel crunched beneath our feet as we walked up her long driveway. I heard bad pop music coming from the house. Shadows came alive on the screened-in balcony that rose over her carport.
By the time we got to the front door, I was sweating. I knocked, but no one answered. This trip already felt like a bad idea. Paul tried the door—it was unlocked. We shrugged and let ourselves in.
The upstairs was crammed with bodies, and their idiot voices magnified the mindless ringing in my ears. We maneuvered through the partiers. I recognized some of the kids. Not a single one recognized me.
The living room was hazy. I couldn’t see Ali anywhere. Paul pushed ahead of me. He nodded toward the door of the balcony.
Ali was out there, standing beside a keg with her girlfriends. She didn’t notice me until I slipped my hand around her waist. She jumped, startled, and then turned around and laughed drunkenly. She wrapped her arms around my neck, forgetting that a cigarette was dangling from her fingers. I started to cough. I swatted the air.
Ali apologized. She laughed again, softer this time. She didn’t put the cigarette out.
Her girlfriends stared at me blankly for a moment, then started back into their conversation. The balcony was packed with people—if they weren’t smoking cigarettes, they were smoking pot. If they weren’t smoking pot, they were smoking something. I didn’t understand how so much smoke could be trapped on a fucking outdoor patio.
I had to get away from it. Ali told me she would meet me in the living room. I pushed my way back through the crowd, leaving Paul standing alone, awkwardly trying to make eyes at a chick.
I sat down against the wall. Other kids stumbled around, spilling piss beer from plastic cups onto Ali’s carpet. I saw a kid from my Spanish class, one of the ones who wrote the GET WELL cards. He didn’t say hi. I don’t think he’d ever known who I was.
I sat there alone. A girl bumped me, laughed. Beer covered my shoes.
Outside, I could hear Ali laughing. I wanted to disappear.
* * *
I sat there for ten more minutes. Paul finally abandoned his quest to find a girl who was special or slutty or drunk enough to give him the time of day. He sat with me inside.
Ali was still on the patio, laughing and talking. I could see her through the swaying crowd, smoking a joint with the girls in the same corner.
“Let’s bail,” I said.
“You wanna say later to Ali?”
“What’s the point?”
Paul nodded. He helped me out of my chair. He held on to my arm as he pushed through the crowd.
In and out of their lives, and they don’t even notice.
* * *
On Saturday, Nat told me that a band was doing a matinee show at the Y. He asked if I wanted to go. I was feeling pretty sorry for myself over the way things had gone at Ali’s party and didn’t want to get out of bed.
But Nat talked shit until I finally agreed to get dressed.
We picked up Paul and headed downtown. We pulled into the parking lot, but I was nervous to get out of the van.
When the kids outside saw our van, they reacted in the complete opposite way I expected. These punks and losers—most too shy to even talk to themselves—came to me as I stepped out of the car.
They hugged me. They told me they missed me. Many of them were kids I’d never spoken with and I knew that a few of them hated my band. But none of it mattered that afternoon—because I was one of their own.
When I saw Brody, he immediately brought up the auditions—when were we going to find a drummer? He had a few people in mind, he said again. I said that I was going back into the hospital Monday, so we’d have to wait until I got home.
He rolled his eyes.
The squeal of amplifiers came from inside the Y. We stopped our conversation and moved inside to see the show.
The band was already onstage. The guitarists were staring down at their tuners. The drummer looked bored. Nat suggested we stand in the back of the room.
“If a mosh pit breaks out,” he said, “you probably don’t want to be near it. Just a thought.”
We moved to the back wall.
It was all for the best, anyway. Maybe I was imagining it, but I was starting to feel like no one wanted me up front, like no one wanted to be near me.
Everyone had been acting so nice—almost too nice—as soon as I showed up. But now I could feel them easing away. The show was starting. This was their time to have fun. They didn’t want to think about cancer. No one needed this buzzkill.
I didn’t feel sorry for myself this time, I just felt disappointed. In another life, I would’ve never stood in the back at a show. I would have wanted to yell. I would have wanted to mosh. But here I was, in the back, coldly observing a world that I suddenly felt half in, half out of.
The tinnitus made the fucking music unintelligible. It was just one overpowering rumble, an earthquake inside of my head.
I looked at the crowd. I looked at their black T-shirts and skeleton patches and sighed. They raised their fists and middle fingers toward the stage.
Then, they chanted a eulogy.
TWELVE
Staggered Rays of Color and Light
1
There was no drama this time. There was no rushing, no doors busting open. We just parked in the two-dollar lot and strolled sleepily inside the hospital.
An off-duty cop monitored the elevators leading to the long-term care wards—he took one look at me, smiled sadly, and said, “Six.”
When I arrived on the ward, they checked my blood pressure, temperature, height, weight—standard shit. Even though I’d been eating, I’d lost six more pounds.
A nurse walked us to my room. It was different, but the same.
This one was a softer blue. The nurse brought a hospital gown, neatly folded with a set of matching slippers on top of it. I went into the bathroom to change—there was no point bitching about it.
I stripped down to my underwear and tied the gown in a crooked shoestring knot. When I got out of the bathroom, I sat on the bed. The nurse took my hand and started searching for a vein.
* * *
There was no chemotherapy that first day back. It was like a warm-up—the hospital processed me into their system while I spent the day getting every test and scan they could cram in.
I drank the CT contrast, and I didn’t even gag. They took sample after sample of my blood, but I didn’t wince once. The scans were old news now.
They saved the green machine for last. Mom sat in the corner of the room reading a cheap thriller as the tech helped me onto the platform. I heard the machine start rumbling, then the platform moved slowly and it swallowed me whole.
When the scan was finally over, I dropped my feet back onto the cold tile. I was dazed. My brain was still shaking with the sound of the machine.
As Mom helped me out the door, I glanced at the techs going over the results on three separate computer monitors. I saw an outline of my body—filled with shapes and colors that reminded me of a news flash, a radar image of a storm. There were tiny little hurricanes moving inside me.
2
Day two.
Mid-afternoon the nurse brought the bags of poison. They dripped into the tube, into the needle, into the vein.
I knew what
to expect from the treatment now. Mom closed the blinds and dimmed the lights. I unplugged the phone from the wall. I demanded zero stimulation, zero distractions—I needed to focus on not focusing. I needed to ignore all sensations. I needed to separate myself from consciousness like a skinny pale Buddha, trying not to puke and be sick and sad and miserable.
The poison hit my bloodstream.
I never lasted long.
* * *
In the hours before my injections—if I felt strong enough—I went on walks with Mom around the hospital. We made laps around the first-floor hallway. I moved ridiculously slowly, rolling my IV and using it for balance.
The walls of the hall displayed paintings done by other, younger patients—finger-turkeys and portraits of dogs, shit like that. We tried to pick our favorites.
There was a huge, open corridor that separated the two buildings of the hospital. Some rich person had donated a fish tank. The fish were bright exotic yellows and blues, oblivious to where they actually were. Watching them swim made me nauseous.
Across from the fish tank was the hospital chapel.
I didn’t feel religious enough to walk in without seeming like a fraud. But when the doors of the chapel were open, I always looked inside. It was a small room with small pews that faced a large, crescent-shaped stained-glass window.
The window struck me. It depicted the image of a girl, wearing a plain white gown.
The girl fucking struck me. She held her heart up—toward the sky. Staggered rays of color and light shined down on her. Two hands reached out from the heavens toward her, this girl in crooked pieces below.
But she was always smiling.
* * *
Down the hall from the chapel was the hospice. I didn’t notice it until the second time we passed. The entrance door was left open. I glanced inside. I saw a boy, about twelve, sitting in a wheelchair. His face was turned away from me. His hair was black. He was alone. A leg was missing.
