We are in a small room in the attic of the church. Most of the time it is used for Bible study, but once a week it’s where the support group meets. We talk, we compare symptoms, we complain about drug reactions, we cry. Like each one of us at this meeting, Sandy has a tumor roosting in her head, tucked in the lining around her brain. She’s been here before, maybe ten or eleven times after her first craniotomy. She’s a mess because she has to have a second. The tumor grew back, bigger than before.
Sandy’s whole name is Sandra Dee. She says not too many people remember that there was once a Sandra Dee who was an actor, an ingenue, a movie star. Sandy is from the generation that knows that, not mine. She’s nervous. She rubs her temple. She fingers the bumps on her forehead. She massages the skin that covers titanium screws around the keyhole in her skull. I broke that habit. I tell her it will be okay. After all, she’s still here. She recovered once. She’ll recover again. At least this time, she knows what she is facing. Not like the first time. The first time, nobody knows what’s coming.
Most of us get dropped off at the church. Most of us can’t drive now. Some of us are recovering from surgery, and others of us have the seizure issue. It is against the law to drive with a seizure disorder. All of us have to take seizure meds whether we have seizures or not. Tinkering with the brain can set off electrical storms. Meds control or head them off. Madonna’s ride left her off at the door today. She got lost. I found her in the sanctuary. She asked me where she could find the spaghetti sauce. The tumor is screwing with her memory. Madonna is a “watch and wait.” Her doctor isn’t hurrying into surgery, and everyone in the group thinks he should, before it gets bad. One or another of us will stay with her after the meeting to make sure she doesn’t wander off. Madonna is thirty-two, small and dark, with curly, black hair that she keepsin check with tortoiseshell combs. She has twin toddlers at home.
Sandy won’t sit next to Madonna. She is afraid her own memory will go, the same way her senses of smell and taste disappeared after her first surgery. It is lousy not to be able to smell good scents, and to no longer taste the flavors of chocolate and strawberries and maple syrup. On the other hand, I no longer mind cleaning the litter box. Many don’t have the watch and wait option. Much depends on the location of the tumor. Sometimes there’s a rush to surgery. A rush to save vision or hearing or speech. A rush to avoid stroke or paralysis.
Liz, the group leader, is late. Every so often she can’t get a ride. So we just talk until the hour is up, not much different from when she is here. Her husband used to be a pitcher in the Major League, and her tumor was the exact size of a baseball. Some coincidence.
Madonna sits on my other side. She stares at the poster paper tacked to the walls. Someone has written terms and definitions on them in wide, red marker. Canaanite, parable, covenant, prodigal, too many to read. Madonna is intent. She squints. Maybe she is trying to make sense of the words, or maybe she can’t see them clearly either, even though she wears glasses too. That happens when tumors pinch optic nerves.
Sandy tugs on my arm. She tells me that she has to pay five hundred dollars up front, every time her doctor orders an MRI now. Insurance is refusing to cover the cost. She is saying how nobody told her this until she showed up for the appointment. The woman at the desk demanded payment before the test was done. Sandy stood there with her insurance card and the scrip for the test in hand. She had twenty-one dollars, loose change, and a gift card for Dunkin’ Donuts in her wallet. She asked the woman how she was supposed to get five hundred dollars when she had not been able to work for over a year, and her disability was barely covering her rent and food, and since when didn’t her insurance cover it anyway?
Check your plan, the woman said. Plans change.
Don’t we know it.Life is what happens while you’re busy making other plans. I know that song. I try not to dwell on being uninsurable. I push the thought away, but anxiety brings it right back. Every few days, I ask my husband about his work, is it going well, is he closing deals, if he is meeting his quota. I phrase it differently. I try to keep my questions offhanded and conversational. If he keeps his job, I am covered and we can deal with the ever-changing health plan. If he doesn’t, I won’t be. The tumor has made me uninsurable. He loses his job, then what? I don’t know. I’ve heard people have to sacrifice everything because of medical bills. My husband worries, he says he can never retire, that he may have to dye his hair, that his retirement home will be a coffin. I hate that talk.
She was married to Bobby Darin, Sandy says. Sandra Dee, she was married to Bobby Darin. McFerrin? No, no, Darren. You ever hear the song “Mack the Knife”? I open my mouth to laugh. Dead nerves in my face make it hard work. I say what’s that, a mob name? Like Paulie Walnuts or Ice Pick Willie? Madonna is looking at us. Sandy leans forward and partly across me and asks her. You know the song? “Mack the Knife”? Madonna shakes her head, then she goes back to staring at the posters on the wall.
One of the fluorescent bulbs in the ceiling light keeps buzzing and blinking out and on, out and on. I can’t look at it. I wish I couldn’t hear it. It does something to me. I don’t remember if I took the pill in the morning. Concentrate on what’s being said, I tell myself, ignore the light.
It didn’t last, says Sandy. The marriage. It didn’t last. Next to me, Madonna speaks. She says she doesn’t think hers will either. Relationships come up at the meetings all the time. Every one around us is affected by what’s wrong. Some of us have good support at home, others don’t.
I am okay in that regard. My kids, my husband. They are there for me most of the time. They forget every so often, and maybe on purpose. I understand. Like me, they want life to be normal. When I’m dizzy, when my head hurts, I sit or lie down. I check out of whatever is happening. They respect that, they ask if it is getting better, if I need water. I still have to tell them to pick up after themselves, take the garbage out, and walk the dog, but the difference is, I like it now. I appreciate normal, I value it, I revere it. It is what I want. The ordinary, the everyday.
This is the first time we are hearing that Madonna is having trouble at home. What’s going on? I ask her. Sandy leans in again to listen.
She says she doesn’t want him the same, she doesn’t feel like it, and he isn’t understanding. The thing that’s growing in her brain is pushing aside her desire, it’s overtaking her thoughts, stealing them, replacing them with worry and forgetfulness. He gets mad at her, he tells her she looks good, that she doesn’t look all that sick, so what’s the big deal? This makes Sandy mad.
Oh crap, she says, the “you don’t look sick” thing again. What the hell. That’s what the woman behind the counter in the disability office said to her, when she went to apply. So Sandy yanked off the wide headband she was wearing, the one she ordered from the online place that sells wigs, hats, and bandanas for cancer patients. She asked the woman how she liked the scar that began a long curve at the top of her ear, and meandered along her newly resprouting hairline to the other ear. Did the uneven line of scar tissue, puckered and red and peppered with scabby, tiny holes left by thirty-three stainless steel staples make for a good look, a healthy look? She turned around. She faced the people waiting in line behind her, and invited their opinions. Her first check arrived a week later.
Her chutzpah, the way Sandy wears her scar like a badge of defiance, I admire that. When I’m talking to people face-to-face, I see their eyes drift up to the divot in my forehead and then further up to the pale crescent where my hairline used to start. They can ask but they don’t. If they did, I would tell them. Sometimes I want to talk about it. Most of the time, outside of these meetings, I pretend. I pretend that the thing that shadows me simply isn’t there.
Talking stops when Liz comes in. We all have to adjust. The surprise of her is always startling, and it takes a minute. Liz is beautiful. Tall, slender, and blond, her clothes are stylish. Her shoes and handbags match. She has dozens. We imagine she has a closet the size of the meeting room, with towers of shallow drawers for her lingerie. We agree that she wears lingerie, while the rest of us wear panties and pajamas. We speculate that her closet has organized cubbies, shelves, and moving racks to display her coordinated clothing. She has uniform features. The dent in her temple is barely noticeable. She moves fluidly and speaks without searching for words. She remembers where the meeting room is. When she smiles, her face muscles move. Her eyelids don’t droop. Liz is what we want to be. Perfect on the outside.
Next to me, Sandy inhales audibly. Sandra Dee was a blond too, she says, as she raises a hand to pat her own gray hair. She’s thinking of dyeing hers when it grows back the next time. No matter what they say about hair dyes. Her tumor is already atypical and what the hell, all the rest of her is atypical too. Her weight goes up and down like a yo-yo. She laughs. I can’t.
“Atypical” means the tumor will grow rapidly, that it has a higher chance of growing back after treatment. It means multiple craniotomies. Multiple times the keyhole is accessed, and the forehead removed to get to the brain. Multiple chances of edema, infection, and deficits, all due to the surgery. Multiple chances of not surviving it. Atypical is the stage between benign and malignant. One step from malignant. I don’t want to be atypical.
A piece of my tumor is still there, nesting in blood vessels, impossible to completely remove. I live with fear, I tamp it down, I stay busy, I work extra, I distract myself from the constant. I dread the once-a-year event, the MRI. I’ve postponed appointments two, sometimes three, times. I despise the machine, I dread it, all of it, the mask that is locked over my face, the demands to stay perfectly still, the thumping as it takes photo-slices of my brain. I look forward to the end of the hour, to silence, to the feeling of birth when the patient table emerges from the cramped space into the brightly lit, chilly room. I relish the brief lull of relief, before a second wave of anxiety hits as I wait for the report. No change. That’s all I want to hear. That means another year of grace.
Sandy doesn’t have that. Madonna may not either. Liz has had twelve of them.
It’s raining. We’re right under the eaves. We can hear it drumming on the roof. Liz asks if there is any particular topic that we want to talk about today. Sylvie, who used to waitress, before her tumors and her balance issues, announces that her neurosurgeon is moving to Austin. There’s some back and forth, recommendations, and names exchanged. The retired teacher wants to know if headaches that last more than four days are normal. She is six months past surgery. Tilda, a former paramedic, asks everyone to speak up. Her tumor destroyed the hearing in one ear. The vegan, Eloise, complains that giving up soy products is a bitch, which makes Liz deliver a mini-lecture on the danger of plant estrogen. We can’t afford to ingest it. Estrogen drives the growth of meningioma tumors. A nasty trick of womanliness. Sandy adds, don’t forget the cell phone thing.
That always gets us worked up. Environmental radiation. According to Sandy, the cell phone giants have suppressed the true results of studies. Her hair goes electric as she scrapes her hands through the short hedge. She raises her voice. How the heck do they decide what levels are safe anyway? Look at Richard Branson, she says, he always uses an earpiece and isn’t afraid to say why. We’ve stopped holding phones to our ears. It is speaker or nothing. Even the earpieces are suspect. We’re susceptible to paranoia. Dental X-rays? My dentist doesn’t even ask anymore.
Madonna fidgets in her chair. Her eyes meet mine. I have to move closer to hear her. She whispers that her husband is always telling her to get off the phone, he’ll say it’s her fault. We dwell on blame, theirs and ours. Maybe we ate the wrong foods, or sat too close to the television, or stood directly in front of the microwave too many times. We keep searching for reasons.
I am thinking there’s nothing written on the posters in this room, or in the pile of Bibles on the table in the corner, or that’s said downstairs in the sanctuary on Sunday, that explains why this has happened to us. We haven’t sinned, or transgressed, or done anything to deserve it. It’s a game of chance, the luck of the draw, the hand we’ve been dealt, and how we play it is what matters.
I grab her hand, clasp her fingers in mine, and tell her he’s an ass. Be strong, take one day at a time, everyone here is a survivor. Know that, take your strength from that. I have. It may not be the strongest of strengths. It wavers. It’s like I am standing on the rim of the ocean at high tide, with my feet buried in thick, wet sand. The water rushes at me. White froth foams around my ankles. I am pulled and tugged, nearly dislodged. I dig my heels in. The water recedes and I remain rooted in the ebb. I wait for low tide. Sandy, on the other side of me, says that’s right, honey, we’re beat to shit but we are hanging in there.
The memory surprises me. My eyes go wet. Though it pricks and stings, I know I am lucky to have it. I’d packed the car. The girls were in the backseat. They’d said their good-byes first. The early morning mist had not quite lifted, and the sun was watery. I hugged my father for the last time at the top of the driveway. I pressed my face to his lean chest, against the thin fabric of his short-sleeved dress shirt. He patted his hands on my back and instead of good-bye, said hang in there. I laughed and replied that the ride wouldn’t be so bad. Throughout our visit, he’d asked me if I was feeling well. I thought I was. He was dead before I learned about the tumor.
Just now, I hear him laugh at my shoulder. Sandy is his kind of woman. Direct and to the point.
Liz is wrapping up the meeting. It always goes over the scheduled hour. The church secretary never complains. Liz asks us to root for Sandy, to pray for her, to send her positive vibes. The second craniotomy is scheduled for the day before the next meeting. We might not see Sandy for a while, or again, but no one says that last one out loud. I can see by Sandy’s expression that she has the same thought. “Look at Me, I’m Sandra Dee,” I remember it’s a song in Grease. Sung by Rizzo. I have to tell Sandy when everyone stops hugging her.
We’ll meet next week, those of us who can get a ride. We’ll dig in our heels and we’ll talk.
Shelly Stack lives with her family in New Jersey, where she works as a music educator and writes in every spare moment. Her fiction has appeared in the 2011 Short Story America Anthology.
Euphony Journal 