maia paras evrigenis

NEON JANE

I am waiting for a copy of my heart, but there’s only junk in the mailbox. Dr. Peters called four days ago to tell me I’m fine like last year and all the years before, but I need to see this for myself. I need to see my pumping heart, my heart that refuses to be anything other than average. 

Anthracyclines were the last and most powerful chemotherapies I was given to rid my body of blood cancer at thirteen, specifically acute myeloid leukemia. Anthracyclines are shown to produce long-term heart defects (leading to heart failure) and are the reason for my yearly echocardiograms. I remember one of my Anthracyclines beautifully. It was smooth and blue in a thick plastic bag hanging above me on an IV pole, so exposed and sparkling there in liquid form. It was a dripping venom disguised as a melted blue otter-pop, pushing down through the tiny tube in my chest. 

When the copy of my current heart arrives, I will put it in the black binder with the others from every year since 2007. I call this creation my little-heart-book. I flip through it when I’ve gone some days without thinking of cancer at all, because I’m 24 now and my life is very different. My little-heart-book forces me to remember, and reminds me to live life the way a cancer survivor should. I’m supposed to be forever grateful and love my life for one reason and one reason alone: I don’t have cancer anymore. 

But I made my little-heart-book originally for another reason, to show that a therapy so determined to make me different, to change my heart forever due to cardiotoxicity, has failed. Instead Anthracycline has left my heart quite boring, and I love to see myself as somebody plain. 

Closing the mailbox, I hear running on the street. I turn around and there’s Jane right in the middle of it, but I’m not worried. Cars don’t have any effect on her.

“Maia, hey Maia!”

Jane really bothers me but she’s hard to get mad at. She’s so cute running toward me with her lanky tween-aged body, lack of eyebrows and neon pink wig covering her bald head. The pink bob stops bouncing as she slows to a walk. I hear her panting change to deep long breaths, just like we practiced.  

“Jane, let’s go inside. You’re tired. And where’s your IV pole?”

“Oh yeah, Maia! I’ll get it so you can push me.”

She wants to stand on the metal over the wheels while I run and roll her down the sidewalk.

I stare at Neon Jane and shake my head.

“I don’t think so, not right now.”

I go back inside to make tea, feeling guilty for hoping that’s the last I’ll see of her for the day. I want to be alone in this one bedroom house I rent in my hometown, Sacramento—me, just me and my family photos from before and after, my animal figurines, my donkey in Greece tapestry, my turtle soap dish, my orange bedspread, my pour-over coffee maker, my two hermit crabs, my John Coltrane poster, Two Kinds of Decay on the coffee table, my sharp cacti in the yard. It’s the perfect world I’ve created for myself and I make sure to keep things tidy. I’ve found the city and space to fight the feelings that I must become something better, that for cancer’s sake, I must greatly succeed. 

When the water is boiling, I choose the Canada mug and ginger tea bag from the cabinet and pour. I lie on the big orange love seat and close my eyes while it cools next to the sunflowers on the table. I breathe and remind myself, as I often have to do, that Jane is a positive force on my life. I remind myself that I am choosing her.

I will never let my Neon Jane go. 

Through my thin windows I can hear her walking back down the street. I know it’s Jane by the sound. She’s found her IV pole again, which she probably stashed in some bushes. She reconnected herself to it like she so smartly figured out how to do. She’s pushing the pole down the street slowly. I hear its little wheels bump and crackle against the outside world they weren’t made for, and don’t quite know how to touch. 

In the morning, Jane’s there with an old diary of mine. It’s the green diary from 2010 when I was a sophomore in high school, about three years into remission. 

She clears her throat dramatically at the kitchen table and reads out loud, “October 7th, 2009. Dear Diary, When I see a picture of myself from 2007 I realize I used to be one of those kids on a St. Jude’s commercial. I feel different than those kids on the commercial. When people watch them they think this: ‘those kids aren’t real to me.’ That’s how I used to be, and still am a little. We see our own life as reality.” 

I roll my eyes. 

“I was so dramatic,” I say.

“You totally were.” 

But we both know nothing’s changed. 

Jane reads on.

“It’s not fun going through life trying to focus on not getting sick again when you have absolutely no control over it. Today I pretended like I do every day, that everything is totally fine. I’m comforted by thoughts of doing good for the world.” 

Jane has always wanted me to go work in a lab, or go to medical school. She thinks I’d be a good doctor because I know what fighting cancer is like. 

“You’d be able to relate to the kids,” she says.

But I would need at least 20 years of psychotherapy (plus private tutoring) before I became a doctor, because I get weird and jealous of new discoveries in oncology. When I was still living in New York, a friend sent me the first article I’d seen on gene therapy. I skimmed it on my shattered phone while I was out walking, and stopped and cried in the middle of a sidewalk in the Village.

When I was 14, I’d let go of the neon pink wig. I was back in town after my cancer treatment at the Lucile Packard Children’s Hospital three hours away, and my hair was growing back. It was only a centimeter long and looked even shorter because it grew in curly. That first day back at my 1200 person public middle school was scarier than a lot of the days I had during cancer. To go back to a school I’d randomly disappeared from the year before, and this time without hair, caused me a disgusting amount of anxiety. 

Jane has trouble understanding this. I try to tell her what 2008 was like, that it wasn’t cool or sexy to be alternative, hipster, or different in middle school. This was before Cara Delevingne and Emma Watson cut their hair. At Sutter Middle School in 2008, your jeans had to be low rise skinnies from Abercrombie and Fitch. Girls woke up at 5:00 AM to wash and straighten their 12-inch hair, every single morning. 

Surviving cancer as a child did not teach me not to care what other people thought of me. It did the opposite. During treatment my body was constantly evaluated, checked, changed, tested, eyed, cared about. Talked about. Walking my middle school hallways, all I could think was: I have the shortest hair out of all the girls in this school, and everyone notices. Because of my non-hair alone, I was ugly to myself, and I would have no chance at a boyfriend until it at least hit my shoulders. Later because of the closed mindedness of my school when it came to hairstyles, this changed to: I would have no chance at a boyfriend until my appearance accurately displayed my interest in one.

“Is she like, a lesbian?” - boy at lockers 

“I don’t think so, she just has cancer.” - girl at lockers

For a few weeks after overhearing this conversation, I deeply contemplated my sexuality for the first time. But the truth was I wasn’t a lesbian, and I got bored of this self-questioning. 

I didn’t have cancer anymore, and saying I still did was the worst possible rumor someone could spread about me. To say that I still had cancer meant that everything my family and I had gone through the year before was meaningless, that I had never overcome what Dr. Davis considered “the most powerful chemotherapy in the world,” that none of it ever stopped, that I was still constantly fighting this thing, that I would never grow up, that I would have childhood cancer forever. 

But all these thoughts are pathetic to Jane. “None of this even matters,” she says now, reading my mind from across the table. “You can be so petty. You need to be stronger.”

“I know, I’m sorry.” 

“You should move back to New York and go to NYU Langone Medical School,” she says. “That’s what you’ll do, you’ll do New York with a real major this time. We can start studying together now. All you do is sit around anyway.”

“That’s not true.”

“You’re getting your life together post-college, and writing that biography of your uncle, yeah-yeah.”

Our uncle, I want to say. But for someone so “strong,” Jane is pretty damn slow. She can’t admit, or rather just can’t believe, that I am all she turns out to be. 

“At least get your old job back, Maia.”

“I don’t want to work at the Delta King anymore. I can’t work in customer service again, hotel management, I just can’t. It’s so fake.”

“Well it’s what you’re good at. And that hotel was cool, right on the river. I mean, it’s not what I want you to do, but it was better than nothing.”

“The biography is important, Jane. What if there’s something I find out about Uncle Jason’s past?”

“Leukemia is genetic not hereditary,” she says. “I googled it recently, for myself in like 10 years, for when I’ve grown up and beat cancer and want to have kids of my own.”  

“Genetic not hereditary doesn’t make any sense, Jane. Everyone knows that’s BS.”

“Well that’s what they say. They’re smart, they’re doctors.”

“You can’t believe everything doctors say. You need to think about your body for yourself.”

“Ughhh. I hate when you go all cancer hippie.” 

I want to tell Jane that our Uncle Jason could be the only answer to cancer we’ll ever have. I want to tell her that his tragic drowning at age 29 could’ve been due to undiagnosed leukemia, that he could’ve been sick and passed out in the water. I want to tell Jane that if I find this in his story, our answer to why will be so simple: it was in our blood. We’ll never have to think about the power lines above our elementary school anymore, the wifi router in our bedroom, the pesticides we ate. But I don’t tell Jane any of these things, because I don’t actually believe them. I write about Uncle Jason for a different reason, for what he represents in our family, for something else he explains. I write to understand an artist with a shortened timeline, and the aftermath of that. I write so I may know what it means to not come up for air. 

There are so many other things I want to tell Jane, mostly about life and how I’ve learned to live it in this cancer surviving body. I want to tell her she’s going to get tired of living so hard, so seriously. I want to tell her that, in a way, the girl from middle school was right: I will always have cancer, and it will always have me. Even if I did tell Jane, she wouldn’t believe me. She only believes in herself and what inspires her. She must in order to survive. But when she does and grows and gets older, she’ll realize that cancer is the only thing she truly knows in this world. Once she’s given permission to talk about it forever, she’ll see she can do nothing else but tell it, and speak it over, again and again.

Jane takes things to make her body go. She takes blood when her cheeks turn white, when she can’t walk somewhere without thinking about the next place she’ll get to sit down. She takes platelets when she bleeds from a rub against a door, a packaged sandwich wrapper, a nothing. These are not cuts, but clumps of red dots—blood trying to seep out of her skin. Jane’s skin is like a coffee filter. 

Jane never wanted to be dangerous. When she was in kindergarten she told her teacher she wanted to be a cat when she grew up. Now Jane is a vampire, sucking other people’s blood. But Jane needs it to make her body go . . . go . . . Go. Go Jane. Team Jane. We love you Jane. Our Neon Jane. 

Jane gets her first period in a children’s hospital. It lasts 15 days and only stops because of what she takes. She is a 13-year-old on birth control pills, skipping the placebo days. Jane takes Cytarabine, Etoposide, Daunorubicin, Mitoxantrone, and Methotrexate. Jane takes everything else she takes (plus her neon pink wig) because she takes the Cytarabine, Etoposide, Daunorubicin, Mitoxantrone, and Methotrexate. These are words Jane pronounces perfectly.  

Everyone back home is worried about Jane, spending time on Jane, crying again about Jane. Other people take Jane’s sisters to school and to horseback riding lessons. Other people cook them meals covered in tinfoil, with instructions for reheating on the top in twisty sharpie. Other people drive Jane’s youngest sister to the San Juan Bautista mission so she can take photos, build a model, and write a report. The parents are busy caring for Jane three hours away, all because Jane must take what she takes—so that her whole life can come up. So that Jane’s blood will stay inside. 

I woke up in my orange bed and remembered a dream from last night. I was in the pool at my parents’ house (only 20 minutes from mine now), but I wasn’t a kid. My dad was there but he said he didn’t want to swim. He sat on the edge with his feet in. 

There was a central line in his chest.

“Dad, where did you get that?” 

“Oh this? I got it today actually. It’s just like yours. It really makes life so much easier. You know, yours is probably gonna get infected with the water.”

I looked down. I felt a central line break through the scar in my chest, and saw its outline on my swimsuit.

A central line is a five-millimeter wide tube inserted near the heart that connects to a large vein below your left collarbone. It’s what they give you when you have a disease like leukemia and need long term care, so you don’t have to do something uncomfortable and stupid, like take chemotherapy through a needle in your forearm. There’s blue stitching where the tube goes through you to hold it in place, and a clear bandage that covers it. The stitches get crusty, and fighting infection with a white blood cell count like yours could destroy you, so the central line is cleaned every two to three days. First it’s cleaned by the nurses, and then they’ll train your mom. The disinfectant smells like oranges. To clean the tube they use heparin and saline solution through one of the two-way spouts at the end of the line. Your dad nicknamed heparin “hep” and whenever he says it in front of the nurses you get embarrassed. 

This time the nurse is using the red spout. It feels cold below your collarbone when they push the saline through the spout and into your vein. You get a chill but you laugh and smile. The nurse says, “Feels cold honey?” You say, “Just a bit.” She connects a syringe to the now clean spout and fills four vials with your shit blood to send to the lab.

There is a right way to wear a central line but no one can do it, not even Jane. This is it: stand straight up with arms high in the air, tall, strong, chest puffed out, like one of those inspirational wooden angels everyone kept giving me when I was in the hospital. I still have one of them. It doesn’t match my place, it’s corny, but I had to keep one. I take the wooden angel off the shelf above the kitchen sink.

I choose a pen from the messy drawer and draw a central line through the chest of the wooden angel. I draw a tube pushing through her honored body. Finally, I’ve grown up to be a “cancer doctor but for kids,” like Jane wants me to be. I must choose something powerful for the angel, something that will work: Anthracycline, the blue kind. I watch her stand there strong while it flows through her veins on the kill. I watch her keep her arms up in the air like that, chest out, proud, unbreakable . . . because I want to see if she can actually carry herself like that. I want to see if she can actually stay proud with a line straight through her heart. I put her back on the shelf and wait for her to crumble, to feel embarrassed and weak. But she doesn’t. She’s a wooden angel. There is no limit to what she can take. 

I only took drugs for fun once in my life. My senior year of college I was at a party at Lori Baker’s on East 10th and 3rd Avenue. It was May and hot outside. I walked to the party by myself with my heels in my purse. I was sick of getting ready for parties with other girls who knew nothing about me, rushing to get places in groups. I was sick of running everywhere in New York City, running away. I wanted to walk slowly, to look in the eyes of others, to reflect on the past. I wanted to be okay with myself, to not strive for the future. I wanted to be slow. I considered my walk a physical statement. But I could never master it. It’s hard to walk slowly when you’re done running in New York.

At Lori’s I found my friends pretty quickly in the kitchen making drinks. We drank warm vodka and coke and stood around. I was not having a good time. I was never having a good time. I went outside with my friend Cat and other girls to take Instagram pictures with Matt Lau, and then we went back inside. Everyone was taking shots and going to the street to hail cabs. I started for the door, but Cat whispered to me that her cocaine guy was on his way.

I didn’t want to do coke. I knew I shouldn’t make my temple body process any more drugs. I was barely taking Advil for a headache anymore. 

But now that I was sure I would move home after graduation I thought: later in life, I might look back and think of this night as a cool New York thing I did. It would be radical of me, a story. And that’s what I was. A story.  So I did three lines of cocaine with a rolled up piece of paper and talked for 20 minutes to our cab driver about tennis. Outside the club I fell and scraped my knee on a disgusting sidewalk, but got up thinking, my immune system is good enough. At the party I was dancing so much, and then I didn’t want to be there anymore. My friend who always tried to take care of me said we should go home. She knew I wasn’t just drunk. At my place we talked about a boy she liked and then she passed out, but I stayed up until 4:00 am. I ran to the 24 hour CVS across the street to buy hydrogen peroxide. Back at the apartment, I scrubbed my knee out in the bathtub. Then I sat on the bathroom floor and silent-cried. I felt so guilty for putting such shit into my body. I closed my eyes and apologized to myself. I told my cells that I was sorry. I thought the life I lived made surviving cancer for nothing, because look at me, I was a vegan doing cocaine at college parties. I was not radical, I was just like everybody else. I, who was supposed to be different, who was supposed to have learned so much, was just like every other college girl in New York, crying at four o’clock in the morning. I, a cancer survivor, was everyone’s first cocaine story.

This was 2016, nine years after cancer. It was when I still felt being average was the worst thing I could possibly be, before I realized that average was the only thing I needed. Three lines of cocaine and I had wasted my life away. But look at me now, embracing a little-heart-book.

Okay, there was another time. But it doesn’t feel like it really counts. It was the end of a summer in California, and I was sitting on a deck with my two friends who were both named Hailey/Haley. Someone gave Hailey a joint as a goodbye present after a summer camp, and we were all excited to share it.

I don’t remember anything we said on that deck, but whatever it was was hilarious. Everything was hilarious. I was hilarious. Hailey was hilarious. Haley was hilarious. Their same-different name was hilarious. Our whole lives were hilarious. My childhood was hilarious. Having cancer as a child wasn’t sad, it was ridiculous. It was ridiculously hilarious. Me thinking I could write about it was hilarious. Me thinking of writing a biography of my uncle was hilarious. Not serious, hilarious. His story was hilarious. I couldn’t stop laughing on the deck that night that it hurt my abs. It hurt so much that I keeled over on the ground—it hurt me, to think about how ridiculous my life was. Then I went inside and ate everything I could find. 

Today Jane has a bone marrow aspiration and a spinal tap, which means they are taking a chunk of her marrow and fluid from her spinal cord to send to the lab. They need to run tests on it, to see how well she is responding to chemotherapy. 

Jane waits with her mom for two hours in the pre-op room. She hasn’t been allowed to eat since the night before, but she doesn’t feel hungry. She plays Titanic Rescue on her iPod touch while her mom reads Cancer’s Gift, and then it’s finally time for the procedure. Nurses Sue and Connie roll Jane on the cot to the silver and white operating room, where Jane takes propofol from the anesthesiologist. It’s a white milky fluid. He pushes it through her central line, the blue spout this time. Jane immediately feels tired but tries to stay alert, because whenever she takes Propofol she plays a game with her mom. These are the instructions: Jane’s mom says a secret word as the Propofol settles into her system. Jane tries to remember it when she wakes back up. 

“Okay honey, the word is…” Jane’s mom looks around the room trying to think of something, knowing she’s running out of time. 

“Brown bag.”

Jane laughs quietly at her mom’s strange choice. 

“I’ll rememb…” Jane says, and falls asleep.

Jane doesn’t remember the secret word when she wakes up in the recovery room. The come down is tough this time, the worst ever. Jane wakes up to the sound of her own crying, and then the beeping of the machine next to her. She’s so afraid, but she doesn’t know why. She’s had this same procedure seven other times, and every time it’s been okay. “I’m so scared mom, but why am I so scared?” she says, grasping her mother’s hand. “It will pass honey. It’s because of what you took.” Jane takes a purple popsicle from her nurse, Kiran. Jane pukes it up ten minutes later and cries again, feeling better only when she remembers her future self, who will be strong and somebody great. Her future self, who thinks cancer is just a thing of the past. 

I wonder what my life would’ve been like if Uncle Jason could’ve visited me in the hospital, if he hadn’t drowned 25 years before my diagnosis. I wonder if Uncle Jason would’ve been there when my hair started falling out onto my hospital pillow during my second round of chemotherapy. Would he have helped me shave it off? Would he have brought the pictures from when his girlfriend shaved his head at Stanford? Would he have told me the story, that my great grandma made him do it? 

Maybe Jason would’ve helped me with music. I’d started taking saxophone lessons a year before cancer. One time, when my dad came to Palo Alto to trade places with my mom, he brought my saxophone. I played Basie’s Blues, the first song in the Jim Snidero song book, over and over again on the rooftop garden of the Lucile Packard Children’s Hospital. If Uncle Jason was alive when I had cancer, maybe I could’ve taken music lessons from him. He could’ve helped me improvise over chord progressions. We could’ve talked about my thoughts on cancer now, as an adult, as the only two people in the family who studied art in school. I wonder what he would’ve inspired me to take from cancer, to make from it. 

This is how it would go: Jason would be visiting Sacramento from Switzerland where he would still be teaching at the Schola, the music academy in Basel. He would be at my grandparent’s house. They’d still be alive and the house wouldn’t be sold. I would go over to sit outside with him, drink kombucha and talk about life, and he would be eating a peach.

“So what do you want from your work lately, since my last visit home?” he asks me. “What are you trying to do? Say the answer quickly, without thinking . . . ready? Go.”

“I want to be as powerful as the peach.”

“Keep going.” 

“I want my skin to fall off, and I want to drip. But I don’t want to bleed out. I don’t want to lose my body.”

“Is that really what you want?” 

He stands up. He takes a bite of his oozing peach. He looks up at the sky. 

“No . . . I . . . I want to be the wooden angel.”

“Better.”

“I want to be as strong as the wooden angel. I want no limit to what I can take.”

“That’s a start,” he says.

I drive back to my house, counting the eight frozen yogurt shops on the way. I park on the street, check the mail. My latest piece for my little-heart-book has finally arrived. I unlock the door and throw my purse and sweater on the orange love seat. I go to the kitchen and get a black marker from the messy drawer. 

In the bathroom I stand naked in front of the mirror and look myself strong in the eyes. I look at the scar on my chest, all because I had to take what I took. So my whole life could come up. So my blood would stay inside. 

I am the wooden angel.

I begin to draw. 

______

MAIA PARAS EVRIGENIS IS A WRITER FROM SACRAMENTO, CA. SHE RECEIVED HER MFA FROM CALARTS AND BS FROM NYU STEINHARDT. MAIA WRITES FICTION NOVELS AND SHORT STORIES, OFTEN WITH A FOCUS ON CHILDHOOD CANCER. SHE IS CURRENTLY LIVING IN SACRAMENTO AND FINISHING HER FIRST BOOK, NEON JANE.