Читать книгу The Ocean Inside - Janna McMahan - Страница 15

Adults were secretive. Her parents and the doctors and nurses whispered in the hall outside her door. While that might have worked with some kids, Ainslie’s hearing was sharp, and she strained to make out their conversations. Sometimes she would lie in bed and pick certain sounds out of the hospital noise, slippers soft in the hall, the call button at the nurses’ station, a cry from down the corridor. And she could smell better, too, which usually wasn’t a good thing in a hospital—alcohol and urine and that too sweet hand lotion all the nurses seemed to like. Ainslie could even smell the brownish antiseptic still lingering on her skin from the surgery.

And the pain. If she lay perfectly still it was like nothing was wrong with her, but if she twisted left or right her back hurt. So she stayed still, the pain medication swimming in her mind. All the details of the humming hospital, the smells and sounds, made Ainslie wish for the calm of waves and the scent of tea olive that drifted through her bedroom window at home. But the hospital windows were shut tight, and even though she was in Charleston at the Children’s Hospital at the Medical University of South Carolina, she could have been anywhere in the world. Sometimes she imagined she was in India where sleepy-eyed camels pulled carts below her window, or she imagined she was in the Arctic where polar bears prowled outside and Eskimo children slept in other hospital beds.

When she was first diagnosed, Ainslie hadn’t tried to understand what was happening to her. She’d just done what was asked, submitted to whatever tests. But then they removed one of her kidneys and the things they did to her hurt more. She was tired and cranky from the meds and all she wanted to do was run away, to rip the tubes out of her arm and run out of the hospital into fresh air and sunshine. Instead, she got a parade of kids in pajamas dragging IV poles past her door. Sometimes they would look in and see Ainslie, and they would wave or smile. Other times they just stared like they didn’t really see her there, and then they would just walk on down the hall.

The longer Ainslie stayed in the hospital the more things began to hurt. They took blood and started IVs, and each time a nurse stuck a needle into the top of her hand or the tender part inside her elbow, Ainslie imagined she was being burned, that a tiny flame was shooting into her arm. Of course, they put numbing cream where they stuck in the needles, but that didn’t really help much. The doctors had promised her something called a port, some thing they put inside your chest, just under your skin. They said they could stick the needles in the port and it wouldn’t hurt so much, but she wasn’t sure that she wanted some creepy thing inside of her. This was when she started to tune in to adult conversations instead of watching cartoons.

Once she tuned in to what was being said, things started to make sense and they started to scare her. She’d learned about chemotherapy. Everybody knew chemotherapy was medicine to kill cancer, but she found out that chemotherapy killed good cells along with bad ones and that was what caused you to be grossed out and to vomit. She’d been scared when she’d overheard the hall-lurking adults talking about the possible weird things that chemo could cause to happen to your body later. They called these side effects.

Ainslie wanted to know what these side effects were, but she didn’t ask her mother. The hospital staff had made a book where they kept all her medical information. They called this the roadmap, and it had all her medicines and all the reactions she could expect, but her mother never wanted her to look at the roadmap book. She told Ainslie not to worry, that the doctors would take care of everything. Ainslie suspected that her mother never told her the whole truth. And her father wasn’t an option. He didn’t know much of anything about medical stuff.

When her mother wasn’t looking, Sloan helped Ainslie decipher the roadmap book. Sloan brought her laptop and they got online. It didn’t take long before they found a link and had document after document off the Internet about Wilms’ tumor cancer. The deal was usually that a kidney got removed, the kid got radiated, sometimes they got chemo, other times not. Most kids survived and were never bothered with it again.

“Piece of cake,” Sloan said. “You’re tough.”

She also said that they probably shouldn’t read a bunch of the stories of other sick kids, that it might be too depressing. Ainslie had agreed. All the research was enough for her to think about without being sad over some other kid with worse luck.

They were in bed together, looking up her chemo cocktail on the Internet. They had both become good at medical lingo.

“I can’t find this drug anywhere. I wonder why.”

“Go ask Miss Vivian. She’s my favorite nurse.”

At the nurses’ station Sloan asked for Miss Vivian and a few minutes later the woman arrived in Ainslie’s room. Vivian flipped through her own reference materials and then said, “It must be new.”

“Is it experimental?” Sloan asked.

“Honey, I didn’t say experimental. I said new.” Vivian flipped her book closed with a frustrated sigh. “I don’t have much info here on that, but I’ll see what I can find out. Sure you want to know all this? It can be scary.”

“It won’t scare me,” Ainslie said.

“We won’t tell anybody you helped us,” Sloan said. “Especially not our mother. She thinks she needs to shield us from all of this.”

“Sure, I understand,” Vivian said. “A lot of parents feel that way.”

Ainslie nodded. “It’s okay. I want to know.”

But that hadn’t been the case when Vivian brought them a printout the next day.

“You didn’t get this from me,” she had said. “I could get fired for this.” Sloan promised to destroy the paper as soon as they were finished.

“What does it say?” Ainslie asked.

“Just a bunch of doctor stuff I can’t understand. A few side effects you know about. Nausea, hair loss, blah, blah, blah.”

She stopped her finger on a line. She reread the passage, then moved on quickly.

“What?”

“Nothing.”

“What?”

“Nothing, I said.”

“You can tell me. What does it say?”

“You really want to know?”

“Yes.”

“Okay. It says this drug here can cause sterility.”

“What does that mean?”

“It means…it means that you may not be able to have babies when you grow up. Sterility, you know, like sterile.”

“Is that bad?”

“Well, it is if you want to have kids, but hey, you don’t need to think about that right now. Look, that’s the worst thing listed here. Your chemo won’t like, make you deaf or blind or anything awful like that.”

But from then on, every time Ainslie arrived at the oncology clinic for another round of chemo, she thought about that word—sterility. She had to push it down and try to focus her thoughts in a positive direction. They told her to imagine chemo moving through her body like a video game character blasting away cancer cells. One time, she had asked to see what her cancer looked like. Her pathologist had been thrilled to show her, had adjusted the microscope eyepieces until the cells were large and like gobs of purple Jell-O stuck together. It was hard to hold her head still enough to keep the focus, but she’d stared through that microscope for a really long time. The cells didn’t move like she had expected because they were dead. The pathologist gave her color printouts of the strange river of cells and she always tried to focus on those cells and mentally blast them away with her imaginary chemo weapons. It helped to know what the enemy looked like.

Once when it was her father’s turn to take her for her chemo clinic visit, her father had put aside his sports magazine and stared at her.

Lying back in a lounger sipping a grape soda, Ainslie had met his gaze and said, “What?”

“You know, baby,” he said, “we’ll always wonder, your mother and I, whether we did or didn’t do something that caused this to happen to you. I mean, we’re sorry if we did. We didn’t know. We still don’t.”

“It’s not your fault, Daddy,” she told him. “It’s not anybody’s fault. It’s just a stupid thing that happened.”

His face shifted in a strange way when Ainslie told him her disease was developed before she was even born, that it wasn’t anything they’d done.

“How do you know this?” he asked her.

She’d shrugged as if it was something everybody knew.

All he’d said after that was, “Does your mother know?”

Ainslie said, “Yeah. But she doesn’t believe it.”

She was always sick for a couple of days after a chemo treatment, then she’d buck up and things would be good for a while before she had to go back and do it all over again. Her parents tried to keep everything as normal as possible. Her dad went to work and Sloan went to school. Her home-school teacher brought homework and Ainslie tried to keep up with the rest of the third grade. Afternoons were all about television and video games. Late in the day the mail would come, and there would be a few cool cards or another package from her grandparents in New Jersey.

It was in these lonely afternoons, before Sloan came home from school, that Ainslie felt sad. She would look at where her animal tanks had been and miss her little pets. The stupid doctors had made her parents get rid of all of her animals because of germs. That had been the worst part of being sick. Ainslie loved her hermit crab. She’d had Mr. Crabs for more than three years, and he had moved shells so many times that she finally lost count. Ainslie had watched his pink, squishy body trying out new shells. He was shy when he was naked, and he’d creep out, his eye stalks searching for safety, then he’d streak to another shell. Ainslie’s mother said Mr. Crabs was modest. It was a good thing her crab didn’t have cancer because you couldn’t be modest if you had to have your butt stuck up in the air for all the nurses and doctors and student doctors at the hospital to see. She had cried and begged to keep her old crab, so her parents had moved him into Sloan’s room until Ainslie could have him back.

A couple of times during her alone time, Ainslie had considered actually writing in the journal the counselor had given her. He’d said it would help her deal with her feelings to write down her thoughts or draw pictures about how she felt. But Ainslie didn’t like to write, and she couldn’t draw nearly as well as Sloan. She’d scribbled a few things down, but something told her that if she wrote anything too personal, her mother would surely peek. So Ainslie just shared her problems with Sloan when she was around. Sloan always seemed to know how to make things better somehow. She wasn’t like adults.

The adults were always full of advice—think positively, imagine video games, write in your journal. They were always bringing her stuffed animals and flowers and cards. Always in her face about something, but they always had that sad, almost creepy look.

At least Sloan was cool. She never said everything was going to be okay like the adults did. She just acted normal. That was one of the things about being sick, everybody acted weird around you. But Sloan just said that being sick sucked.

And it did suck. It was the biggest, most stupid sucky thing that could happen.

It sucked to have your animals taken away because of germs. It sucked that your hair fell out and your face swelled until you looked like a cartoon character. It sucked that you were constantly getting stuck with needles and poked until you just wanted to scream at people to leave you alone. It sucked to feel bad all the time and there was nothing you could do about it.

Being sick should be like school. You go for a certain number of days and do what you have to do and you get a report card and everybody says you did great and then it’s all over and you get a summer vacation. But being sick wasn’t like that. There didn’t seem to be any end.