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For Neheet
Any sufficiently advanced technology is indistinguishable from magic.
—ARTHUR C. CLARKE
1.
I’ve always thought an astrocytoma sounds like a shooting star. Right? Like something you’d want to watch from the roof of your house or the top of a really tall hill, probably lying on your back on a wool blanket and eating popcorn. On the news, they’d be all like, “Don’t miss the astrocytoma shower tonight! It’ll be most visible from nine to midnight, weather permitting. Once in a lifetime!” You’d lie there on your back on the blanket, waiting for it, and then it would cross the sky over your head and you’d think, “That’s the brightest, most beautiful astrocytoma I’ve ever seen.”
And it would be.
* * *
“Astrid. Astrid.”
I blink. There are tiny bursts of light swimming at the corners of my vision. My astrocytoma.
An astrocytoma is not, in fact, a shooting star, though it should be. It’s a brain tumor, made of star-shaped cells. Astrocytes. Things of beauty, and instruments of death.
I blink again and my mother comes into view in front of me. She was sitting next to me a minute ago, and now she’s hovering over me, her face too close to mine. “Astrid?”
Yes, my tumor matches my name.
“Yeah?”
“Did you hear Dr. Klein?”
My mother’s face is splotchy. Her eyes are rimmed in red. I look from her to Dr. Klein, who’s giving me her Serious Face.
“I’m sorry, guys,” Dr. Klein says, clearing her throat. “I wish I had better news.”
Poor Dr. Klein. I shouldn’t be thinking about her feelings right now, but I am. Dr. Klein likes me. She already saved me once, when my brain first got tumored. Ninth grade. There was the surgery to remove it, and then the radiation, and then the chemo. It took nine months—my mother likes to say it took the same amount of time to start my life as it did to save it—and then everything looked good for a while. Like, doesn’t-happen-that-often, almost-enough-to-make-you-believe-in-God good.
I don’t believe in God, though. I believe in science, and there’s a reason for that. Science is a kind of miraculous thing of its own, miraculous enough to make a star-shaped tumor go away for two years, which a lot of people said was impossible. But science is also reality, and it can only do what it can do. And now, according to the scan we’re all staring at on Dr. Klein’s computer screen, science has run up against its natural limitations.
That’s my brain on the scan. My brain, the traffic control center of everything that makes me me. Just staring back at us in all its light and shadows. It never gets old, looking at a human brain.
Dr. Klein swallows. “Astrid, you know how to read this scan. I don’t need to tell you what it says.”
She’s correct. The thing Dr. Klein did, besides saving me the first time, was make me love the brain—which, if you think about it, was pretty badass of her, considering that I had only recently come face-to-face with my own brain’s potentially fatal flaws. She let me do an internship in her lab this past summer, and since my hair had mostly grown back by then, no one in the office knew I’d been one of her cancer kids just a year earlier. I was just a high school student with an interest in neuroscience, and she let me look under the microscope at slivers of normal and abnormal brain tissue, at scans just like this one, for patients with all kinds of astrocytomas and gliomas and medulloblastomas.
So she’s right—I can read this scan. And it is not a good one. There’s my brain, both hemispheres, and right there at the base of the brain stem, a foreign object of my body’s own making: a jellyfish, a bubble floating away from a child’s liquid-coated wand, a bright asteroid. A tumor made of stars.
“So where do we go from here?” Mom has her notebook out, the thick black one that’s fraying at the corners, her keeping-track-of-Astrid’s-cancer notebook. She clicks her ballpoint pen into action. My mother expects that there is always somewhere else to go from here.
I wait for Dr. Klein to break it to Mom: Do not pass go. Do not collect two hundred dollars. There is nowhere else from here.
“We can try more chemo, right?” Mom pushes.
“Yes, we can try a new drug combination. The options have improved somewhat in the last couple of years. There are no guarantees, but…” Dr. Klein hesitates. “There is one other thing that I think has some promise.”
Not what I was expecting.
“There is a clinical trial launching in the spring, for an experimental immunotherapy that targets Astrid’s particular type of tumor. You may be a good candidate for it.”
I feel Mom’s body physically lighten next to me, like she’s about to levitate. “Okay,” she says, her voice shooting up an octave like it does when she’s excited. “Okay! We can do that. How do we get her into that? You can get her in, right?”
“I don’t want to get your hopes up, guys. I need to be honest with you that this is … a long shot. At best. First we have to do more testing to make sure Astrid is in fact a candidate. Then she would have to be accepted—they’ll look at a lot of factors to make sure she is healthy enough, relatively, to be part of the trial.”
“So I have to be healthy enough to take part in a clinical trial for a cancer treatment?”
Dr. Klein cracks a smile. “I realize that’s a tad ironic. But yes. That’s why we’ll do a chemo regimen regardless. Look, obviously, it’s a trial. Some patients will receive the treatment; others will receive a placebo. We won’t know which one Astrid receives, and we’ll have no control over it.”
“But if it works well, they’ll cut off the trial and give the treatment to all the participants, right? They won’t withhold it if it’s working well?” Mom’s talking fast now. She’s read too much about all of this.
“They would, yes—but that’s pretty uncommon, to be honest. The early results would have to indicate that we are causing harm to patients by giving them a placebo, that it is an ethical imperative to deliver the treatment to all the trial participants. It’s a high bar.”
Dr. Klein pauses. Mom is scribbling in her notebook, probably notes of things she wants to google when we get home, or even when we’re stopped at a red light en route. (Some days I think I’m statistically more likely to die from my mother using her phone while driving than from cancer.)
“You should also know that the potential side effects from the trial could be intense.”
“Chemo intense?” I ask.
“Potentially, yes, or more so, depending on how you respond. And there would be a good deal of time spent in-patient because of the frequent infusions. I don’t say that to discourage you. I just think you should know the full picture there.”
We’re all silent for a moment. Mom’s still jotting notes. I can feel her energy vibrating next to me. I’ve spent so much time in hospitals already. The idea of signing up for more—volunteering for it—ma
kes me feel like the room is tilting.
Mom looks up from her notebook. “We can handle the side effects.”
We? I love my mother. She’d do anything for me. But we do not have cancer.
Dr. Klein smiles gently. “Maxine, I want to be candid with you both. The trial has potential to lengthen Astrid’s life. It may, or it may not. But it’s unlikely to cure her completely. I’m really urging you not to pin all your hopes on this.”
“Alison,” my mother says in response, “you’re telling me this is our best shot, right?”
Dr. Klein takes in my face, my relative reticence in this conversation. Then she looks back to Mom and nods. “That’s where we’re at now. I’d say so.”
“Right,” Mom says. “Can you really expect me not to pin my hopes on it?”
* * *
In the car, my mother takes deep, calming breaths in the driver’s seat. I stare at the white of her knuckles, gripping the steering wheel as she drives.
“Astrid,” Mom says, finally breaking the silence in our more-than-a-decade-old Honda. “It’s okay. This is just a hiccup.”
I knew the tumor was back well before we saw the scan in Dr. Klein’s office. There were the light bursts clouding my vision, for one. Then I started tripping again, losing my balance. And there were the headaches. A headache turning out to be a brain tumor is one of those crazy things that almost never happens. Like, when you get a really bad headache, you might think for a single, fleeting moment, “Man, this could be the big one.” But it’s pure hypochondria. It never actually happens in real life. Until it does.
I didn’t tell my mother right away when it came back, because I knew she’d go all freaky maternal on me, and I wasn’t ready to hurt her again. Maybe I wasn’t ready to be sick again, either. So I lived with my tumor made of stars, just the two of us, for about a month. Until one morning, when the headache bloomed so hard and so fast that I puked all over myself, and fell on the way to the bathroom, and then I didn’t have to say anything, because she knew as well as I did. I wish I could forget the look on her face when she came bursting out of her bedroom and found me on the hallway floor, covered in vomit. I stared up at her, my only participating parent, and me, her firstborn baby, and watched the panic come into her face like a cloud rolling in before a summer thunderstorm.
“I think this clinical trial has real promise. I mean, immunotherapy, right? That’s what everyone’s talking about.” We stop at a light and, sure enough, Mom pulls out her phone and starts tapping away with one hand, the other still resting on the wheel.
“Mom, you’re going to get a ticket.”
“They can’t ticket me unless they pull me over for some other reason.”
“I think that’s for not wearing a seat belt, Mom. I’m fairly certain they actually can pull you over for using your phone.”
“I just don’t want to forget what I’m…” The light changes. Mom drops her phone and we lurch into the intersection. “This could really work. I feel good about this.”
I take my phone out and pull up Mohit’s last text: How’d it go? it reads.
He doesn’t need to ask. He knew, too, as soon as I told him the headaches were back.
I start to type a text in response: Doomsday. Then I delete it. I want to say something clever to Mo, to reassure him that I’m still me. But I can’t. I close my eyes, press my head against the seat of the car. I’ll call him when I get home. It will break my heart to break his heart all over again.
As we drive on, my mother keeps talking. About more chemo, more radiation, more trials, more, more, more.
“Mom. Please. Just stop.”
She turns to me. “Babe, we still have time. We have options. You know that, right? We’re not done here.”
I run my tongue over my lips, which have gone very dry all of a sudden. I want to tell her that she’s wrong. I know about clinical trials and new drug cocktails, I do. I know more than I should, thanks to my internship. Enough to be pretty much a shoo-in for the best neuroscience programs in the country for college, with Dr. Klein’s recommendation, which is what I’d imagined I’d be doing after high school, right up until the headaches and the light bursts came back. I know that the chance of any kind of novel treatment working for me now, given everything, is about as close to zero as you can get without already being dead.
And more to the point, I know that sometimes—often—the treatment is worse than the cancer itself.
Instead of saying that, though, I nod. “Yeah, Mom. I know.”
2.
I don’t need to call Mohit when we get home, because he’s waiting on the front steps when we pull up. Mom idles the car and leans toward the window on my side. “You go ahead. I’ll find a spot.” There’s no parking lot for our building, but Mom knows all the secret side-street spots in the neighborhood. She claims she’s mastered the art of VPS (Visualizing the Parking Space), and then, poof, it appears.
Mo looks focused, and worried. He stands, taking his scuffed saxophone case in one hand, and wraps his other arm around me when I get to him.
“So?” he says as I fish my keys from my bag and let us into the front vestibule. Junk mail and bills are poking out of our mailbox, but I don’t bother to collect them. We take the elevator to the second floor and slip into the apartment.
“Liam?” I call down the hall. I think my brother is still at his friend’s house, but I want to be sure. No answer.
Mohit closes my bedroom door behind us. “So?” he asks for the second time. “What’d she say?”
I bury myself in his chest and wait until his arms are firmly wrapped around my shoulders to take a deep, exhausted breath. Then I pull my face away and look up at him. I shrug. “What we thought she’d say.”
The confirmation of what we already knew ripples through him. I can see the muscles in his jaw tighten, and his eyes flicker away from my face and then back again.
“Shit,” he says, finally. “Well. Now what?”
If you’ve read a lot of chick lit (or let’s call it something less sexist and gross, like “lighthearted literature featuring quirky female protagonists and romantic plot lines”), and by the way I have read a lot of said literature—because, frankly, the better part of a year with cancer isn’t the best time to catch up on your Dostoyevsky—you might imagine that Mohit would have a “crooked smile,” whatever that means, and that his T-shirts would smell of fresh laundry, and so on. In fact, though, he has a perfectly even smile (when it’s on display), with dimples as deep as tiny wells drilled in each cheek, and very nice teeth, and he never smells of fresh laundry because his parents buy the unscented, chemical-free, totally organic kind of detergent that doesn’t smell like anything. The kind of detergent that costs twice as much as the regular store brand and that my mom used to splurge on, too, before she had, you know, brain surgeries to pay for. Kind of ironic, really, that as soon as I got sick Mom had to stop buying all the pricey natural products she’d hoped would keep us safe from getting sick in the first place. Now it’s all chemicals and GMOs all the time around here. Doesn’t seem to be making much difference one way or the other, as far as I can tell.
I shrug. “More chemo. And there’s some trial in the spring. My mother has basically already signed me up for it.”
Mo’s face brightens, just like Mom’s did in Dr. Klein’s office.
“But I don’t even know if I’m eligible yet. And even if I am, it’s just so…” I trail off. I don’t want to kill all his hope at once, but Mohit doesn’t understand as well as I do just how slim a chance any clinical trial has of working in a meaningful way for any one patient. “Let’s just … pretend it’s not happening for a minute.”
“This trial, or the tumor?”
“Both?”
He runs his fingers through my hair—my hair that practically just grew back, and now it’ll be gone again—and then kisses me, and I close my eyes and exhale and let him pull me gently onto my bed.
* * *
Mohit
and I met in ninth grade, BT (Before Tumor). It wasn’t a magical first meeting—not particularly “auspicious,” as Mo’s father, who’s a phlebotomist by day and officiates Hindu weddings on occasional weekends, might say. We were just in homeroom together. He’d moved from California for his mother’s work, and he was all West Coast-y with kind of shaggy surfer hair. I’d never seen an Indian American kid with surfer hair, really, and I frankly didn’t know they existed (which, I know, was stupid and/or a little bit racist of me). Anyway, I wasn’t even particularly thinking about boys or boyfriends or anything remotely romantic. My best friend, Chloe, and I were really into this particular word game on our phones that was a super-trend at the moment, and that was what we were talking about in homeroom that morning when Mohit walked in and told Mr. McDowell that he’d just transferred and was he in the right room?
He was.
He sat down next to me, unfolded his schedule, offered me his hand for a shake, and introduced himself in a whisper. He pronounced his name clearly: Mo-hit. “You can say it, like, if Moe Szyslak from The Simpsons is playing baseball?” he said, as if he expected I’d need the help. “Moe hit the ball. Mohit.” Then he asked if I knew where he was going for math.
I walked him there that morning, and all the rest of the mornings.
Four months later, a week after he’d first asked me if he could put his hand on my boob—over my shirt, obviously—and I’d said sure, I started noticing the headaches. And by spring, just when everyone at school was starting to think of us as one of Those Couples, Dr. Klein showed me a scan of my brain for the first time.
* * *
I hear Mom come in. There’s a knock at my bedroom door.
“Mohit, are you staying for dinner?”
Mo looks at me and mouths, “Want me to?”
I nod. Mohit’s presence at dinner will prevent Mom from talking too much about the clinical trial, and how she’s sure I’ll be eligible, and how she’ll call the acupuncturist again and that’ll help with the headaches in the meantime, and how I should really put on my Optimism Pants. Except she’ll be completely, obviously, gripped by fear. She thinks I can’t tell, but … come on.
Fear of Missing Out Page 1