Authors: Reed,Amy
Stella and I got chemo that first time in adjacent rooms. After a few minutes of lying there while the poison pulsed through the portacath tube drilled in my chest, I heard a knock on my wall. I knocked back. She started a series of steady, measured taps. I thought maybe it was Morse code. I didn't know Morse code. Then I started counting and noticed a pattern that repeated itself after seven clusters of taps. You have a lot of time to kill when you're getting chemo for eight to ten hours.
I pulled out my phone and dialed what I counted. She picked up on the first ring.
From that moment forward, Stella was my secret best friend. By secret, I mean only in the cancer world, the hospital world, the world of Sick Kids. Stella and I never see each other outside this world. In the other world, the world of the well, we are other people. We are people who would not mix. In the other world, she's in an all-girl punk band and I'm a cheerleader. I mean
was
. Past tense. I'm not really sure what I am now.
In the other world, I already have a best friend. Kasey Wexler-Beene has had that title since she walked up to me on the first day of kindergarten with her bouncing blond pigtails and said, “Do you want to be friends?” We've been inseparable ever since. Until the cancer, that is. How can friends be anything but separable when one has cancer and spends most of her time either in the hospital or at home recovering from being in the hospital? How could a relationship not change when one is
dying and the other is not, when one is halfway in another world that no amount of love or history or devotion will ever help the other understand?
But she tries, and I love her for that. At first, a lot of my friends joined her when she'd visit, either piling into the living room while I recuperated on the couch, or even coming to the hospital when I was too sick to go home. I could be hurt by their absence, but I understand, and I don't blame them. They have their lives to live, and they shouldn't waste them sitting around watching me get sicker, and honestly it's a relief to have fewer people to smile and pretend for. But Kasey is forever loyal. She still comes to visit with my parents or my boyfriend, Will. But over the past few months, especially since I've gotten sicker and stopped going to school entirely, it's gotten harder and harder to find things to talk about, harder to find things we have in common. What do you talk about when one person's life has stopped and the other's has kept moving forward?
In some ways, I've already said good-bye to Kasey. I've already said good-bye to my family. They may not know it yet, they may think I'm still with them, but I've been drifting away for a long time now. The world of the sick has been claiming me a little more each day, with each round of blood work, with every CT scan and PET scan and bone scan, every biopsy and bone marrow aspiration, every surgery, every chemo injection, every radiation treatment, every blood transfusion, every pain med, every hospitalization. After a year of this, it's a miracle I still know how to speak to people outside the hospital. It has been so long since I belonged in their world, no matter how hard they try to keep me in it, no matter how hard I try to stay.
But I haven't said good-bye to Will yet. I can't. Even though I know it's selfish, I can't let him go. I can't release him. Some part of me still believes we can make it through this together, that our love is strong enough to work miracles. I can't imagine going anywhere without him, even death, wherever or whatever that is. I have no idea what's going to happen to me after I die. I don't even know how to begin imagining it. People keep telling me it's going to be quiet and peaceful, that it will be a place I can be forever happy, but I don't believe them. The only thing I know for sure is it will be a place without Will. Wherever I go, I have to leave him behind. And how can that be paradise? What's the point of heaven if the person you love most in the world isn't there?
UNCORRECTED E-PROOFâNOT FOR SALE
HarperCollins Publishers
..................................................................
“ARE YOU SURE YOU'RE OKAY?” MOM SAYS FOR THE MILlIONTH time, her eyebrows furrowed in her now permanent Worry Face. “We don't have to do this.”
“Of course I'm okay,” I say with as big a smile as I can squeeze out of my face.
Of course I'm not okay. I'm seventeen and I've been sitting in Oakland Children's Hospital for the past two weeks with a broken leg, and now I'm waiting for test results that will tell me how close I am to death. I just watched my parents beg the evil Nurse Moskowitz for permission to take me outside so I can breathe real air instead of the toxic stuff that circulates around the hospital. “It's not the smartest idea,” Moskowitz said with her signature squint and pursed lips. “But I suppose it's safe as long as she's bundled up.”
That was today's little victory. Hooray! Now my parents and my sister, Jenica, get to wheel me around the hospital's sad excuse for a courtyard, which isn't much more than a few picnic tables and paved circle around a tuft of grass next to the helicopter landing pad. I made my face placid as a medical assistant moved me from my bed to a wheelchair, an arduous process of disconnecting my IV and fluids, transferring and hiding my catheter and pee bag, and trying to not drop the giant broken log that used to be my leg. So yeah, I am the exact opposite of okay. But no one needs to know that. They have enough to deal with already.
I didn't really want to go for this “walk” in the first place, but I played along because we have to do something other than sit in my depressing room while we wait for Dr. Jacobs to show up with my test results. So now here we are, huddling beneath a gray blanket of winter drizzle, breathing the “real air” of a city with one of the worst rates of pediatric asthma in the country. Mom is trying hard to keep her smile, so I am too, and so is Dad. Smiling to keep each other smiling. That's what we do. It's our special family talent. Jenica taps away at her phone, too preoccupied to play this game as devotedly as us. We have become experts at ignoring the elephant in the room, even when he follows us outside, even when he's clomping around us and blowing his trunk for attention, even though he's been with us for so long he's practically part of our family, our loyal pet.
“Look at those daffodils,” I say.
“They really do a nice job with the landscaping here,” Dad says. “It really brightens the place up.”
“I was thinking I could bring in ice cream tomorrow,” Mom chirps. “Maybe get some of those weird flavors you like at Tara's? What was that last one you tried? Curry?”
“Saffron,” I say.
“Do you think Caleb and Stella would like some too? I'll get a bunch. We can have a little ice cream party.”
“It's freezing,” Jenica says. “Nobody wants ice cream.”
I don't tell them that even this pale winter light is too bright for me, that even with the buffer of my pain pills, it feels like a million tiny screws are boring through my eyes into my brain. I can feel the wet air seeping through my clothes. I try not to shiver. I don't want to tell anyone I'm cold. I don't want to make anyone worry more than they already are.
Someone has to make conversation. Someone has to help my poor mother out. “Did you hear from Stanford?” I say to Jenica.
“Not yet,” she says, finally looking up from her phone. “Probably have a few weeks until they send out their letters. I feel good about it, though.”
“And if you don't get in, there's always Berkeley, right?” Mom says. “Or even UC Davis?”
Jenica snorts. “I am
not
going to Davis. You can't be serious, Mom.”
Oh yeah, this is why we don't talk.
I can't help myself: “Don't forget, some of us aren't even going to get to go to college.”
“Oh, god!” Mom exhales.
“Girls!” Dad says, and wraps his arm protectively around Mom. She leans into him with all her weight, shoving her face into his chest, as if blocking out the world will make it stop hurting.
“I'm sorry, Mom.” I am sorry. I didn't mean to hurt her, just Jenica. But even Jenica didn't deserve that. They're already hurting so much.
Mom returns to us, the brave smile plastered back on her face. “It's okay, honey.” She takes my hand. “Oh, Evie, you're so cold!”
“I'm okay.”
“Let's go back in,” Jenica says. At least we can agree on something.
Neither Mom nor Dad seems to want to move. As miserable as this is, they don't want it to be over. These small moments outside my hospital room are some of the few things still connecting me to their world. No one talks about it, but there's always the possibility that any of these could be my last trip outside. My last chance breathing air outside the hospital. Forever.
I think I'm going to puke.
“Are you okay?” Dad says.
“I'm fine,” I say again. Again and again and again and again, even though it will never be true. I don't mention the headache that has morphed into a full-blown migraine strong enough to tear through my painkiller haze.
The rain starts in earnest. The sky darkens. Jenica is the only one brave enough to turn around and start walking back to the hospital.
Nurse Moskowitz meets us at the elevator, all frowns and cold, efficient hands. “I should never have agreed to this,” she says, shaking her head as she pushes my mom out of the way to take control of the wheelchair. “Evie's in no condition to be out in the rain.”
Mom helps me get into dry pajamas while the others wait in the hall. Moskowitz takes my temperature, and it's barely above ninety-six. “Too low,” she scolds Mom, and turns the heat up in my room. All I want to do is sleep, but that's when Dr. Jacobs arrives.
“Doctor,” my dad says, shaking his hand. Everyone's sitting up a little straighter. Even Jenica has put her phone down and is paying attention.
“I think I have a migraine,” I say.
“It's a little early for your pain pills,” Moskowitz says.
“It's all right,” Dr. Jacobs says. “She can have them now.” He's usually such a stickler about meds. The news he's here to deliver must be bad.
Moskowitz gives me my pills and watches me swallow them before she'll leave the room. In the stillness before Dr. Jacobs starts talking, I gather myself up, close my eyes, take a deep breath, and then I'm gone. It is one of the things I do best. Jenica's good at school; I used to be good at cheerleading, and now I'm good at this. I zone out. I go away. I fly out of my body and up to the ceiling to watch the scene unfold. It is just information now. It is just facts. There is nothing for me to feel.
Metastasis.
I hear the word in Dr. Jacob's voice. I am vaguely aware of my mother crying. My father groans. Jenica whimpers. But I am above it all. I am keeping a clear head. Someone in this family has to.
Metastasis.
The dirty word. The forbidden word. The word that separates the merely sick from the almost-dead. The word “terminal” has gone out of style, but that's basically what it means. Metastasis means “spreading.” It means the cancer is everywhere. It's what I expected. I know it's what we all expected, though no one had the guts to say it out loud.
A year ago, when I was first diagnosed, the cancer was just a tidy little tumor on my left hip bone. Ewing's sarcoma, a rare form of cancer that is almost exclusively reserved for teenagers, found its way into my body, got comfortable, and made a little home. But then it became ambitious. That's the nature of cancer; it's the overachiever of the disease world. It gets angry when you try to remove it. Sometimes the microscopic remnants left over after excision vow revenge and come back even stronger.
Of course, this is not how Dr. Jacobs describes it. His version of cancer doesn't have a personality. He's all monotone medical jargon behind the safety of his clipboard. “It's in your bone marrow now,” he says with his practiced kindness. “We haven't been able to contain it.” He continues explaining over my mother's breathy sobs, describing how the cancer had spread down my side and into my femur, then jumped ship into my marrow, weakening the bone enough to make it useless, which is why I ended up breaking my leg two weeks ago while just walking. All this despite surgery, radiation, and a week of all-day chemo every month for the past year. All this despite everything in my life coming to a halt.
The cancer had been there for a while, hiding, dancing its invisible dance that tests missed until it was too late. The disease had been twirling itself into a frenzy during the months after my original
diagnosis and the surgery to remove the tumor. I got into a rhythm during those months of outpatient treatment, during those three short weeks between rounds of chemo. My hair would start growing back, my body remembered how to eat and make a little muscle, and I could walk for more than a minute without getting exhausted. I started going to school again. I gave myself permission to get used to the feeling of my own bed. Will and I would resume our standing Friday night date as if nothing happened, and I could fall back into his arms where I belonged and pretend I could stay there forever. I would start feeling good again just as it became time to do it all over.
No one ever told me I was cured. No one even said “remission.” But it's like we all collectively agreed to pretend there was a chance the tumor was gone. It was only natural that I become the ringleaderâI was a cheerleader, after all. I saw those heartbroken eyes looking at meâmy parents, Kasey, Will, everyone at school who was used to me being so fun and positive and full of lifeâall of them wanting me to assure them everything was okay, and I knew it was my responsibility to keep their hope alive. Every time I got home from another round of chemo, I forced a smile and said I felt great. I learned how to puke quietly. We all believed in miracles then. We had to.