The Situation

by Francese, Glasoe Lila;

  After months in and out of hospitals, Gramma Vera is finally moved back home. The doctors feel there is little hope for survival. My mother takes Carolyn and me to her childhood home in northern Minnesota. She tells us that these may be the final weeks of Gramma Vera’s life. We arrive late at night at their home deep in the northwoods. The house is huge, at one time occupied by all of my grandfather’s siblings and their families. This is how Finnish immigrants lived: together as a tight tribe. My Great-Aunt Mary occupies the ground floor, and my Gramma Vera and Grandpa Vern occupy the second and third. Each unit has its own kitchen so many family members can always be accommodated if need be. Although it’s late, Grandpa Vern gives Carolyn and me both a bowl of Chex cereal when we arrive. My mother easily slips into her role of dutiful daughter. She helps my grandfather care for my gramma and makes her comfortable. Gramma Vera is asleep much of the time during our visit and is given heavy doses of narcotics during her few waking hours. At my young age I can’t really grasp what is wrong. I hear the word CANCER often from the mouths of adults who come in and out of the home. Gramma Vera is hallucinating, pretending she is weaving on her loom and that she is making a blueberry pie. One day when I use her blow dryer, she yells, “Don’t shoot yourself!” She cries when she goes to the bathroom, and my mother rushes in to help her. I’m not sure why. Carolyn and I occupy ourselves by walking into the small town to visit the Newsette that sells magazines, and Canelake’s that sells freshly made candy. At the house there is an enormous carpeted front hall stairway that curves easily at its base in between floor one and two. We spend hours sliding down these stairs until someone tells us to stop. As the days turn into weeks, the house feels sadder. My mother cries a lot, and we often crawl in bed with her. I want to go home. When I say my prayers at night, I ask God to please protect the people at our house from cancer.

  Climbing the stairs while holding her hand, Softer than the worn cotton rug beneath us, Perching myself at the top, Back against the door,

  I slide her between my legs. She is light as I fold my arms, One, over the other, Around her waist.

  I smell the sweet scent of grass. And summer air in her hair. It sweeps over my face like a chestnut blanket. Soft, like all of her. Breathing deeply, She pulls my corduroy pants into small wads,

  Wound tightly into each tiny fist. On “Three!” We begin moving. Slowly, and then faster,

  We reach the first turn. My legs are burning, As her hands grasp harder with each SCREAM.

  Louder, falling, filled with laughter, We tumble together. In a heap at the bottom of the staircase, One on top of the other, I feel her heart beating beneath me.

  She is warm and so small, That I cover her body completely.

  I am still, as long as I can, Before she jumps up only to begin again… It is in this moment, I remember falling in love.

  -Carolyn Glasoe, 1987

  Chapter 12, Ojai, 2014

  I AM A DISASTER

  At full speed, Carolyn begins a medical trial at Cedars in LA. With their advanced equipment, they have identified a membrane that was not removed during her first surgery in Ventura and are planning to operate on her again to retrieve it. The lesson we learned:The most thorough scans should be conducted at large hospitals with massive funding on updated equipment that can often see what older machines at smaller hospitals cannot. Carolyn again has her severe headaches. The doctor has her on heavy doses of steroids in the hope this new membrane won’t create a new tumor. Her oral chemo medication is making her very sick. She says, “I am a disaster.” I haven’t ever seen someone this sick. I’ve never known anyone going through oral chemotherapy. Some days are better than others. I decide I will take her to get a massage at a spa in Palm Springs. This is one of our many impromptu family trips to Palm Springs, all six of us. When Carolyn can’t think of a word for something, she uses the phrase, “the situation.” For instance, I walk into her bedroom to see if she needs help getting dressed for the trip and she says, “I am trying to deal with the situation.” She points to all the clothing laid out on her bed.

  “You are trying to get dressed,” I say.

  “Yes.” “This looks good,” I say, handing her a t-shirt and a pair of shorts. Carolyn looks at me at this moment with that “tumor look” I recognize from right before her diagnosis. I wonder if a tumor is back. We stay on course with our plan to relax in the desert but post massage, her sickness worsens. Chris and I call the doctor, wondering if we should rush her to LA.

  “No,” he says. “She has an appointment Tuesday. We’ll deal with it then. Just call if it seems to worsen. “

  It does, of course. The nausea becomes so great it is hard for her to leave the bed to use the bathroom. The doctor ups her steroid dose again. While this is good for the tumor – meaning it delays more growth- it is a horrible happening for all of us. The thing I have learned to dread the most so far is her doctor prescribing and adjusting steroid dosage. Rage is always the result… huge, scary, movie calibre rage that puts Jack Nicholson’s greatest anger scenes to shame. Early on, I react by crying. She doesn’t make sense and can’t be calmed down. Reacting or attempts to console her only push more buttons. Chris says nothing. It’s harder for me to do this. I am not a quiet person, and I have always had what Carolyn and I coined, “The Glasoe Need for Justice,” meaning a need to win arguments if I feel I am in the right. Steroid rage comes out of nowhere – especially when doses are lowered or raised. Our children can be the reason she flies off the handle. I want to be with her to help care for her, but many moments I just can’t, and I escape with the children for a made up errand. Chris does the same. The two of us are usually the focus of her steroid anger. I find myself wishing she hallucinated like my Gramma Vera did while she was dying from cancer, rather than manifesting rage. Chris and I soon realize Dines is the only one able to calm her down. He is at work all day. He is not the pusher of pills she doesn’t want to take or of food she refuses to eat. Chris and I are the pushers. Dines is the sweetness for her at the end of the day. She likes to be with him. She has even started clapping with great joy when she sees him come home from work. “My Francese family!” she exclaims.

  “Yay, Dines is here!” I say.

  “GREAT!” says Chris. Dines’ return home is Carolyn’s pinnacle of joy.

  “Let Dines do all the talking. Say nothing.” I say to myself over and over in my head. Eventually Dines always calms Carolyn down and life resumes with the moments of rage and anger behind us.

  Every night when Dines and I go to bed, the sheets seem slightly damp. It’s an unsolved mystery. No animal smells, just a slight dampness from maybe spilled water or a spritzer bottle…The bed is always made early. I get up early to swim, and Dines is normally up and making the bed when I return at 7:20am. After the children are at school at 7:55am, we all go about our day. Chris and I have started to trade off constant care of Carolyn. As her condition worsens, we feel she shouldn’t be alone. She doesn’t know this of course, but often little things can be hard for her, so it’s good to be within earshot. He has been taking it for the team for the morning shift and luckily, with the nature of my work, I can often be home right after lunch and school pick up. Carolyn often rides with me just for company as the “mom taxi” drives through town. However, the routine changes from time to time, and the upcoming weekend is one of those times. Chris has to fly to San Francisco or New York City – I can’t specifically remember which, but he leaves full time care of Carolyn up to us. Dines takes the kids to school, and I enlist a friend whom I often hire in my design business to be “in the field.” It’s a great excuse for me to catch up on paperwork, pay bills, and organize my laptop, which now has photos three layers deep. I make Carolyn some Brazilian cheese balls and an egg for breakfast. She is taking so many pills, and even when she says she is not hungry, I beg her to eat at least a little to coat her stomach with something other than chemicals. I begin paperwork. She is looking at her Facebook. Soon, she announces she is going to get dress
ed, and I ask if she needs help. “No!” she says, “I am fine. I’m going to take a bath in your room,” she states.

  “Oh, sure!” I answer. “I’ll come turn it on, and I have some bath salts you can use.”

  “That’s ok,” she says. “I want it plain, and I know how to turn it on. I do it everyday.”

  “You do?” I ask. “Yes, it’s one of the few things I can do,” she says.

  I nod, and off she goes. Carolyn has always loved baths. Her tolerance for hot water is off the charts, and when I peek in on her, I notice only the hot faucet in the “on” position filling the tub. So many of her other proclivities seem to be disappearing, and I smile with relief that something is the same. I use this time to dive into my unanswered personal emails (so many they are overwhelming). Carolyn has been swimming in her bath for over an hour, I realize as I finish up an email from one of her college friends wanting an update on her condition. I walk into my bedroom. All is quiet. I don’t hear water. I slow down my footsteps and creep through the doorway. Carolyn is asleep, without clothes, red with heat from using only hot water, and still a bit wet from her bath. She has pushed back the covers and is in our bed on the sheets. Damp bed mystery solved.

  Chapter 13, Minneapolis, 1978

  SISSY CAN YOU HEAR ME

  My mom has gone back to night school to finish her PhD. Carolyn is eight. I am six. Dad is in charge. He cooks us waffles for dinner sometimes! He watches Hogan’s Heroes, and on Friday nights, Dukes of Hazzard. He reads us great books -Charlotte’s Web, Charlie and the Chocolate Factory, James and the Giant Peach. We love reading time with Dad. He uses voices and even a falsetto for female characters. The rule is we must finish dinner and have a bath before reading time. He runs the bath. It is almost too deep. I have to tilt my head back to keep my mouth out of the water. The water is super hot. It feels almost too hot, and I have to breathe-exhale-breathe-exhale to adjust as I slide into the tub. Carolyn loves it this hot, so I pretend to love it too. We share a bar of Ivory soap. We wield a red plastic beach shovel and pretend it is a boat paddle. We are rescuers paddling out of a storm, saving people along the way. When we wash our hair, we pretend to be models in a hair commercial. We scrub our heads and smile just like the Breck Shampoo girls on TV. When we are done, Carolyn helps me out of the bath, unplugs the drain, and helps me dry off. She brushes my hair while I awkwardly put on my white terry cloth bathrobe. We run into Dad’s room and climb into the enormous king bed that’s covered in a big blue fluffy comforter.

  Carolyn brushes her hair and braids it herself while snuggling in and the story begins… Tonight, Tekla, a Norwegian nanny character my father likes to pretend to be, is the teller of our story. Dad is wearing my mother’s brunette pinned-up wig, an apron that ties around the waist and a hand-crocheted shawl. Tekla has been a staple character as long as I can remember. Her voice is similar to Dame Edna’s - an English character almost off the page of an Oscar Wilde play. She speaks in her English accent with a Norwegian word thrown in from time to time. Tekla makes us giggle when she pronounces words funny - like “ordinry” instead of ordinary. Or when she yells “Uff-da” at the end of a sentence. Dad’s stories are full of silly characters like Tekla, and we are a captivated audience.

  I am still too scared of the dark to shut my bedroom door at night. I always ask Dad to leave the hall light on, and I often talk to Carolyn in her room from my bed until I am so sleepy, I stop. Sometimes Dad puts us to bed quickly after our story if a sports game is on and Mom is gone, forgetting to leave the hall light on. When this happens, I am frozen in panic. “Sissy,” I whisper loudly. “Can you hear me?”

  “Yes, Lila,” she answers.

  “Please, please, please, turn on the hallway light,” I beg.

  “You do it, Lila. I’m almost asleep!” she moans in an obviously tired voice.

  “Please, please, Sissy,” I beg.

  “Fine,” she says. “But you owe me!”

  “Okay,” I agree. The light switches on. She walks to my doorway.

  “You’ve got to grow up, Lila! Monsters aren’t real. No one’s gonna get you.”

  “I know. I just get so scared,” I say. Carolyn walks closer.

  “Move over,” she says. I have a hot water bottle under the covers, and as she slides in beside me, I place it on her chest. “That feels so good!” she says.

  “You can hold it. I’m hot enough,” I say.

  “You’re not still scared, right?” Carolyn asks.

  “No,” I giggle, throwing my hot leg over the covers and over her legs.

  “Good,” she says, sounding slightly sleepy. I can hear her heart beating as I lay my head on her arm. She pats my hair, and I copy her breathing pattern until soon, we are asleep.

  Chapter 14, Ojai, 2014

  SWOOOOOSH

  I lie in my bed, unable to find motivation to start the day. Carolyn’s situation overtakes every thought and every waking second. Her new treatment protocol is hardcore - designed by the world-renowned neurosurgeon, Dr. John Yu, while she is under the care of primary neurologist Dr. Jeremy Rudnick. It requires a seven to eight week stay in Los Angeles. She will have a combination of chemo, radiation, and vaccine therapy. She will have the membrane that showed up on Cedars’ sophisticated equipment removed. Her second surgery is scheduled for the end of October with Dr. Yu. I’m trying to be positive about the hope we are given by these new doctors. In times like this, hope seems to be all we have. Dr. Yu has achieved a survival rate of five years with patients in his glioblastoma vaccine trials. Reading Dr. Yu’s resume, I am floored by his qualifications – Stanford, Harvard, MIT. He was listed as one of the top cancer specialists in the world by Newsweek Magazine. He is a Culpepper Scholar and a Preuss Award winner. If anyone can save my sister, he can.

  In preparation for her impending move, treatment, and therapy, Carolyn is very realistic. She is never one for fuzzy conversation. As I wander into the kitchen, barely dressed and in search of morning coffee, Carolyn asks me to call our haircutter. “Could she come to the house?” she asks. Our town is small and now that the word of Carolyn’s illness has spread, the pitying “bless your heart faces” as she calls them, have begun. These faces make Carolyn uncomfortable. She wants to avoid the public. I call Jennifer, our haircutter. Looking at Carolyn now, I almost wouldn’t know that she is sick. That’s the thing about cancer. Normally there is no pain or look to it. Knowing her deeply, I see her gaze has slightly changed – her eyes-but other than that, she is still so beautiful. She is definitely in this moment, much more put together than I. My hair is doing its Diana Ross impersonation, I didn’t wash off my eye make-up before bed, and looking down, I notice my tank top is inside out.

  Jennifer arrives before I have finished my coffee. I am so thankful for her quick response, or I would have been nagged about her arrival time all day - Carolyn forgetting time and time again she has already asked me a question she asked me ten minutes beforehand. Jenn is a gorgeous, petite blonde. Her sweet disposition is apparent from the first moment she enters a room. She always hugs Carolyn and me and any other family or friend that may be around at the time. Carolyn’s mood lifts when in the presence of Jenn. We begin by showing her the incision mark that was made for the first surgery under Carolyn’s shoulder length hair. As Jennifer gives Carolyn a short, sassy cut, she is able to make the scar on her scalp barely show.

  On Friday Carolyn and Chris will move down to their temporary Los Angeles apartment. My friend, Joseph, a realtor, has helped us find something near the hospital. Dines and I drive down to Los Angeles to bring some more furnishings to the apartment – a rug, some throw pillows, some lamps. I also bring a table and chairs to fill an empty patio so Carolyn can sit outside. I include a statue of a white French bulldog, a reminder of Pickles, the Frenchie she loved for many years. My mother sends me with one of her paintings. The extra furnishings make the minimally furnished apartment feel less sterile. It still feels completely depressing to think of her here for two months
, sick from her treatments and lying in a bed that isn’t hers.

  October twenty-second is the day scheduled for Carolyn’s second surgery. I hate that I am not there, but school is in session, and someone has to be with the children. Carolyn has asked that we downplay what is going on with her for Matson’s sake, so we go about life as normally as possible. Matson has moved into our guest room. He cries at night when it is time for bed. Dines and I switch off lying down with him. Sometimes Fliss crawls in too. Some nights he tightly holds onto my head, making a helmet of sorts with his arms and hands, sleeping with his face touching mine. He says things like, “What if I need to know what Mom would do, and she’s not here?”

  “You just ask me, Matson,” I say. “I was made exactly like your mama. Gramma Beth and Boppa made me the same way they made her. And I will always be able to tell you what she would do or say.” These moments break my heart. These are moments you find you can’t dwell on for too long because the only result is a low low…the ultimate depression. An eight-year-old boy having to watch his mother suffer through the worst brain cancer possible is so utterly unfair, it’s maddening. I stare at the ceiling until Matson’s grip on my head loosens. He has fallen asleep. I am so tired and drained that I cannot move from this spot. I listen to his even-paced breathing and watch his beautiful angel boy face sleeping, completely smooshed next to mine.

  Halloween is around the corner, and Carolyn has been away a little over a week. She survived her second surgery. The membrane left in her brain had grown a new tumor, and the doctor tells us it was so large that when he opened up her head, it lurched out and into his hand.

  “There were touch and go moments,” Dr. Yu says, post surgery. “When I removed the tumor Carolyn’s brain began to collapse. The new tumor growth was much bigger than her first tumor. Its massive size was an enormous intruder in her brain. These tumors often come back more aggressively, at a faster rate, and larger in size,” he says. “Hopefully, her new vaccine trial will slow this process down.”