The Situation

by Francese, Glasoe Lila;

  Chris confides Carolyn’s recent diagnosis to only a handful of friends. The Marvins, lifelong friends of ours from Minnesota, step in to help with the birthday plan. They arrange a beach camping trip for Matson with their three boys. Matson is thrilled. The Marvin boys are imaginative and interested in many of the same things Matson likes. The boys all request cupcakes for a pre-camping birthday party lunch. We decide on Padaro Grill, near the beach, not too far from Ojai. Chris accompanies Carolyn to the hospital and offers to get her anything she wants before her surgery. Carolyn says to Chris, “I don’t want anything. I just want my sister.” The “fuck yous” and “hate yous” are gone. Chris confesses breaking down as she is wheeled away. I imagine him alone at the hospital in an empty white-walled lobby, in shock and unable to read the news on his phone -his normal routine to pass the time. His confession is unexpected and awkward. I’ve known him for almost twenty years, and we have never spoken about how we feel. Carolyn has always been our filter.

  The surgery is the longest seven hours of my life. Chris waits with her for a bit and then leaves to meet Matson for his birthday camp out. I agree to take over, leaving Fliss with my husband at home and driving to the hospital. I hate hospitals. The walk from the parking ramp to Intensive Care is grueling. My mind goes wild as I walk. What if she wakes up unable to speak or talk or even recognize me? As I enter the ICU, I am relieved to hear her bossy voice. “Don’t give me that anti-nausea medication! I like the old-fashioned kind all of you hate – the Flexural. Yes, give me that now – it’s the only one that works!” I bawl with relief, wiping my eyes with the back of my hands. She looks annoyed with me and says, “Jesus, Lila. What?”

  “I’m just so happy the True You woke up!” I say as I kiss her soft forehead. Carolyn has always been bossy, even fierce at times. Her personality has propelled her through a male-dominated field as an investment art dealer. She ran two galleries: one in Minneapolis, our hometown, and one in New York City. She was featured twice in The New York Times, and she says these mentions are her version of Academy Awards. She knows how she wants things to be, and it is hard to argue with her because she often does know better than everyone in the room. She knows how to live, and she never holds back telling others how to improve their lives. Her friends tolerate this because as hardcore righteous as she is, she is more than equally generous. She gives artists cars when theirs no longer work. She pays for hotel rooms at art fairs she knows they can’t afford to attend. She throws five-star dinners for those she loves and gives ridiculous, lavish gifts. She helps friends build businesses. She gives a depressed pregnant friend fancy shoes - Yves Saint Laurent four-inch pumps in an attempt to make her feel attractive and fabulous. Carolyn is always there to remind you that you are loved. She is a complex woman who successfully manages both Wall Street wizards buying investment art and the small-town farmer who sells her vegetables weekly. She can walk and talk with “any man”, and this is a rare gift bestowed on only a fortunate few.

  Carolyn’s pathology doesn’t come back until early the following week. I am furnishing a large farmhouse home with friends and co-workers, Lisa and Shelly. I hear the word GLIOBLASTOMA over the phone from Chris. I haven’t heard it before. I Google it. “Despite maximum treatment, the cancer usually recurs. The most common length of survival following diagnosis is twelve to fifteen months, with less than three to five percent of people surviving more than five years. Without treatment, survival is typically three months.”

  The world stops. I fall into the staircase with the pillows I am holding. “Oh, my God! Oh, my God!”

  Chapter 4, Minneapolis, 1978

  MRS. MANILOW

  A pillow is holding me up as I attempt to do a handstand on our blue and white camel-backed living room sofa. My mom has left us alone at home, confident in the knowledge that our neighbor, Jan Moon, is home next door. I am six. Carolyn is eight. We are listening to our favorite album – Barry Manilow’s Trying To Get The Feeling. We have serious “moves” for our favorite songs on the album – Bandstand Boogie in particular. Barry sings, “Bandstand! Handstand!” and we do handstands. If my dad were home, we wouldn’t get away with doing this on the furniture, but when we are home alone, the whole house becomes our play yard. It’s too cold to be outside. It snowed overnight, and fresh white snowdrifts cover the yard. The sun shines directly on the surface of the snow, and little specks of ice shimmer like diamonds. The snowman Carolyn and I made yesterday looks like he is wearing a cape from the snow storm. A mound of snow sits on top of his long orange carrot nose. Minneapolis is often seventeen degrees or less in December. Today is one of those days. We will spend the day playing inside.

  I call Carolyn “Mrs. Manilow.” She requested this two years ago when she got Barry Manilow’s album. It has become our absolute favorite. We know all the words. We dance and loudly sing along. I sing another pop hit song perfectly. I sing it all the time. It’s a song by Andy Gibb called Shadow Dancing. Andy has flowing blonde hair and cool dance clothes. Who can’t remember (if you grew up in the 1970s) his white tight pants and barely buttoned pastel-colored shirts? I tell Carolyn if she is “Mrs. Manilow,” I will be called “Mrs. Gibb.” We dance with each other, alone, and with our furry Norwegian Elkhound named Kari whose nails we have painted red with Bonnie Bell nail polish. Sometimes we put my mom’s underwear on Kari. She likes to dance with us in the living room way more than she likes to roller skate with us in the basement.

  We have an enormous doll who often joins us on cold days when we are trapped inside. Her name is Baby Dolly Glasoe. Her oversized head sports a radical punk hairstyle that Carolyn and I created in our bedroom-based salon last month. Baby Dolly Glasoe has permanent eye make–up created with blue and black Sharpie pens. We polished her nails pink when we polished Kari’s nails. They match the tie-dyed t-shirt Carolyn made Baby Dolly Glasoe this past summer at our lake cabin in northern Minnesota. When I get tired of dancing, I lie down on the floor, using Baby Dolly Glasoe as a pillow. Carolyn joins me. We stare at the ceiling, continuing to sing along to our favorite hits.

  In the 1970s, everyone’s mom has a wig. My mom is not an exception. She has a drawer full! My sister and I love sneaking into her light blue and cream bedroom to try them on. We lie on her satin cream bedspread and pose for each other. We make up characters with our new looks – a German blonde named Uschi who wears “der Jeans” and is “Chic und Ausgezeichnet.” Or Joan, a brunette-wigged imaginary “friend of our mother” who speaks with a slight New York accent. On warm days in Minnesota, we look forward to leaving the house in search of younger kids in our neighborhood whom we think are naïve enough to be fooled by our disguises. Joan (I in mom’s brunette wig, her wrap-around skirt, and a billowy top) often whips up a batch of cookies for the younger boys in the neighborhood. Carolyn and I use “elements of surprise” when making Joan’s cookies - Tab soda, paprika, cayenne pepper, Fresca, Marshmallow Fluff. We aren’t allowed to use the oven when our mom is out on an errand, so we freeze our cookies rather than bake them to make them hold together. Travis and Eduardo, two boys who live down the street, seem to love all our treats. Travis even takes extras, stuffing them in the sides of his knee-length tube socks. We are always enthusiastic about kids trying our treats. We even cheer when they devour a whole batch.

  “We can sell these!”

  We enthusiastically dance for hours with Kari to celebrate. KC and the Sunshine Band’s Do You Want to Go Party is our favorite pop hit. Carolyn and I laugh almost to tears that it sounds like KC is singing Do You Want to Go Potty. Today, coasting on the high of our cookie sell-out success, Carolyn realizes Barry Manilow’s initials are B.M. We laugh so hard, I fall to the ground and wet my pants.

  Chapter 5, Ojai, September 2014

  CAN’T STOP GOOGLING

  Lisa and Shelly look down the old wooden staircase at me collapsed, lying on a heap of down-filled bed pillows. I look up at them. I don’t have to say anything. Their eyes fill with tears too. We cry and cry and
cry. I hand Lisa my pocket-sized cell phone, and she and Shelly silently read what I’ve Googled. “The pathology came back,” I say.

  “Oh, Lila, I’m so sorry,” Lisa says, brushing her dark hair from her face, looking up from what she just read.

  “Let’s just finish up here,” I say in defeat. “Let’s just be done.”

  Except for a few nose blows and sobs, Lisa, Shelly and I finish staging the house silently.

  Carolyn is still in the Ventura hospital recovering, and rather than go home, I pick up my seventy-five year-old mother to accompany me to the hospital. My mother is barely five feet tall. She has lived in California for eight years but still looks like a typical midwestern lady. She loves bright colors, and as she walks to the car, I notice that her loud prime-colored tennis shoes coordinate perfectly with her sheer cotton scarf. Mom comes from a line of tough Scandinavian women who work as hard as they laugh and seem to live forever. My father passed away shortly after their move to Ojai, but rather than grieve, my mother joined a hoola hooping group, online dating sites, and a women’s Bible study.

  When we arrive at Carolyn’s standard issue hospital room, she is meeting with a short gray-haired lady wearing an all-purple outfit. The woman has a kind face and speaks slowly and deliberately to Carolyn. We learn she is the hospital’s speech therapist. Carolyn’s speech appears to be intact, but she can’t remember how to add simple numbers or answer questions about dollars or amounts. The speech therapist tells the three of us that Carolyn will have to work to relearn some of these basic numerical things. I notice that Carolyn doesn’t directly say she doesn’t know something. She skirts around it. She did this even before diagnosis. I am told this is often referred to as “tumor guarding,” a behavior common in those with brain tumors. Before diagnosis, this behavior often makes the brain cancer hard to call out, as the symptoms are initially non-specific and excused by the person exhibiting them. Carolyn didn’t mention the headaches (I just witnessed the continual downing of Tylenol) or the nausea until the day before I insisted she go to the hospital. I saw her behavior turn more aggressive, but her already assertive personality and stress-filled job made this less surprising. I wonder if she is avoiding admitting to the speech therapist that she doesn’t know things because her “tumor guarding” has now become habit.

  I don’t, at any point, ask Carolyn if she’s read about her diagnosis. Instead I putter around her room, filling up her water glass, opening a new box of tissues, organizing the ugly maroon-covered visitor chairs into a straight line. I remember a piece of random kid art I have in my oversized purse. I take it out of my handbag, unfold it, and smooth it on my lap with my palms. There is an empty cork board in Carolyn’s room and I use the three pins that are stuck in the right corner to pin up Fliss’ masterpiece. The sun is beginning to shine through the window as the marine layer, a standard of coastal living, travels back over the ocean. As the speech therapist leaves, a white orchid arrives, and I smile at the beauty it adds to Carolyn’s ugly room. Carolyn looks tired, and I use my fingers to motion to Mom the symbol for walking out of the room. Mom walks to Carolyn’s bedside and kisses her forehead.

  “We’ll be back later, Pumpkin,” Mom whispers.

  On the way home, Mom and I talk about what we both have read on the internet about glioblastoma. We talk for the first time about the possibility of losing Carolyn, the thought being unbearable. I’m silently guessing that it is more difficult for my mom to go through this than me, as it is the wrong order of things. Is there anything worse than watching a child whom you created, carried, nursed, and nurtured, die? I privately wonder, with this loss, do some of the dreams you hold for your child and share for the future die too? As a mom, I am sure so much of you must leave if your child dies before you. Out loud, unable to deal with reality, I mention none of these thoughts. Instead, Mom and I encourage each other’s denial.

  “If anyone will be in the rare five percent, it will be Carolyn.”

  “Yes. She is the strongest woman I know.”

  The removal of Carolyn’s tumor makes it feel like there is still hope… for the moment.. Our hope is as strong as our denial.

  As word spreads about Carolyn, people come out of the woodwork, offering opinions and support. One of these people, the father of a childhood friend, changes the course of Carolyn’s treatment. The only real hope for glioblastoma victims is admission into a clinical trial program that offers new hopeful solutions for cancer treatment. Carolyn was offered, through her friend’s father, assistance from a medical support representative from the Mayo Clinic. They recommend two glioblastoma trial programs they feel offer promise–Duke University and Cedar Sinai Hospital in Los Angeles. Glioblastoma is rare in people Carolyn’s age. Most cases are found in people over seventy. This kind of cancer is also rare in women. Her advisors know the unique case she presents to these trials will make her a highly desirable, qualified participant. Carolyn chooses Cedars so she can be closer to Matson. We are all relieved. Her fourteen months of treatment begin. I lay in my bed at night, staring at the shadow of the ceiling fan as it rotates above me, wondering what the corridors of the hospital will look like, what her doctors will look like, and how old they will be. My initial reaction about her admission to their program is relief. I convince myself that since she was admitted, her life is going to be saved. I think she believes this too, despite the fact that the internet says nothing about a possible cure for a person with this diagnosis. All the articles are about elongating a glioblastoma patient’s life or detailed accounts of grueling treatments. I can’t stop Googling Carolyn’s disease. It has become a ritual. Every night, after everyone has gone to bed, I sit in the dimly-lit family room, pouring over glioblastoma stories on the web.

  I pour a glass of wine and settle on the down-filled linen sofa in search of a new article I haven’t seen before in my research. “Bullseye!” I say out loud, finding an article entitled The Choice to Not Treat. I begin to read. It’s very well-written by an extremely articulate woman who cared for her husband, a once famous cinematographer, during the final year of his life. Her touching accounts of his struggle are raw and heartbreaking. His epic and sudden seizures inside locked public restrooms are heart-wrenching. After reading the article, I am haunted by her depiction of his crazy hallucinations - fish falling from the sky- and the terror of those around him who don’t understand his disease. He chooses treatment because he and his wife both hope for a cure, but how quickly that hope turns to pain and the excruciating anticipation of his death. I gulp my last sip of pinot noir, wondering if this will be our journey. Am I half as strong as this strong woman? Can our family survive this relentless bully looming in the distance?

  Chapter 6, Minneapolis, 1979

  THE BULLY

  Carolyn hates a bully. It’s the early summer of 1979, and I just returned home from my lemonade stand. Minnesota is horribly humid in the summer, and it is the first day the temperature has reached eighty-five degrees. It is perfect weather for my friend, Elaine, and I to sell lemonade. Elaine is SUPER BOSSY and often lets the other kids in the neighborhood know she is in charge during summer vacation. Carolyn is not a fan. “Were you with Elaine?” she asks as she as she puts her shiny viola back in its velvet-lined case. She must have been practicing while I was at my play date.

  “Yes. We had a lemonade stand,” I say. “I got this whole pencil box full of money!” I proudly extend my arms in front of me, holding in both hands a navy blue, red, and gold Wonder Woman pencil box. Carolyn takes the box out of my hands and opens it.

  “Why is it filled only with nickels?”

  “Because Elaine let me keep the bigger ones,” I innocently answer.

  “Lila, these are only worth five cents! Did Elaine keep all the dimes? Oh, I bet she did! Dimes are worth ten cents, Lila. That’s double what yours are worth! Come with me!” Carolyn grabs my hand, holding the Wonder Woman pencil box of nickels in her other hand, and stomps out of the front door, crosses the street, and heads d
irectly to Elaine’s house. I stand a little behind her. Elaine and Carolyn are not a good combination. The door opens. Elaine has seen us coming. Her arms are crossed in front of her body and she sways side-to-side. She is wearing her red one-piece swimsuit and pink jelly shoes. As she sways, her blonde bob swings like a pendulum.

  “Hi, Glasoe Girls!” she sing-songs from the stoop. Her right foot taps impatiently on the brick stoop beneath her.

  “Elaine, I am so mad at you! Let me see your pencil box from the lemonade sale!” Carolyn shouts.

  “Oh, I already put it in my piggy bank,” Elaine replies in sing-song. “Sorry.” Carolyn continues to hold my hand and marches right past Elaine and into the white brick house.

  “Mrs. B!” Carolyn yells. “Mrs. B, we need you!”

  Elaine’s petite mother runs into the front hall from the kitchen, still holding a pottery dinner plate and a rust-colored dish towel. “Oh, hi, Carolyn, dear, what is it?” she says. Carolyn states her case. The dimes are found. They weren’t in Elaine’s piggy bank. Elaine doesn’t even have one! They are in a sticker-covered pencil box under her bed. And it’s not just dimes she has. The box is also full of quarters.

  Carolyn smiles as she walks me home carrying both boxes. There is no sign of Elaine in the neighborhood until early July.

  Chapter 7, Ojai, 2014

  I AM VERY GOOD AT THIS

  I don’t want to reach out to anyone to talk about my fear of Carolyn’s treatment plan. Instead I want to stay so busy that I don’t have even one second to think. I am very good at this. My day starts at 4:40 am with a wake-up alert from my iPhone on the nightstand. I put on my black swimsuit, some old sweatpants, and a fuzzy jacket that’s perfect for the cool early mornings in Ojai. I let the dog out – Dolly, a feisty one-year-old Pekingese who still sleeps in a crate in the kitchen. I brush my teeth, comb my long, unruly blonde hair, and grab my keys. I meet Chris in the driveway, and we drive down the road to our local “mom and pop” coffee shop. Every morning, we are greeted by the same cast of characters - Jon, the owner/barista who greets us quite charmingly in an Australian accent. Fred, a retired sailor, grunts hello in between inhales and exhales of his Camel cigarette. Peter, a hilarious television writer who has already devoured half the newspaper before our arrival, often shares a headline or two. Highly caffeinated, we arrive for the 5:30 am opening of the local athletic club pool alongside the twelve or so other townsfolk up before the sun, ready to exercise. For an hour we swim with the Ojai Masters Swim Team – around two thousand meters in distance. Swimming is the perfect sport for me. It’s dark and cold, which I strangely prefer. My Scandinavian ancestry may be to blame. Swimming is a team sport that requires very few conversations because swimmers are underwater most of the time. I am with people, but I don’t have to dig deep into conversation or, more importantly, focus on the situation in the forefront of my mind. There’s no time for that. There is only time to swim. “You have ten seconds to rest in between sets,” says Coach Rick. Rick has been coaching the team for almost thirty years in Ojai. He is serious about our workouts and our performance as individual athletes. Rumor has it that in the past he trained Olympians. Ten seconds of rest doesn’t allow for much personal reflection. At five minutes until seven, I exit the pool. I shower in the locker room and dry off in the oversized sauna. Chris meets me in the echo-filled lobby for the short drive home. I enter the house. Everyone is still sleeping. Dolly barks, and I open the back door to the yard.