Duetting: Memoir 12

Duetting: Memoir 12If the muskrat digging holes in the banks of our pond were to continue to bore a tunnel clear through to the other side of the earth, it would end up in the Indian Ocean off the southwest coast of Australia. Marika had picked the farthest place one could go from our cozy home in the hills surrounding Ithaca. But on our first forays into the jungles of cancer, we were being carried off to a world even farther and more foreign, and there was no knowing what awaited us on the other side of it.

To me, cancer was the demise of ancient neighbors, the terrifying realm of beloved grandparents. It wasn’t supposed to happen to one’s child. Although there was Marika’s father’s brother who died at age six, of a brain tumor, over forty years before. How could my daughter have cancer? All I could think was what did I do, or not do, to cause this? Visions of all the used and refilled water bottles in Marika’s room kept haunting me. Dozens of plastic bottles on the floor, in her gym-bag. In the hot car, festering toxins. “That can’t be good for you,” I’d mentioned to her, casually, way before cancer. What kind of mother was I that I hadn’t kept my daughter safe and healthy?
“Laur, you tell Mom. Okay?” I begged my sister, as cancer moved into our lives, clobbering me with guilt. And shame. I couldn’t face my own mother.

Everything Laurie read about Marika’s type of leukemia said that once identified, it should be handled as a medical emergency. By the time it was diagnosed, Marika’s disease was already advanced. Aggressive. So after one night in our local Cayuga Medical Center we dashed up north to Strong Memorial, a teaching hospital at the University of Rochester Medical School. But before she could escape the Ithaca hospital, Marika­­­ had to undergo the cancer novice’s initiation, the bedside bone marrow biopsy.

Marika lay prone in the hospital bed, waiting for the inevitable pain. We both saw the tool. It resembled the antique hand-crank drill I inherited from my grandfather, a carpenter in the 1930s. The doctor marked a spot inches above her tailbone. He braced himself. I held Marika’s shoulders down. He drilled. She shrieked. I cried, silently beseeching him to hurry up. Her face and neck turned red. I focused on the tiny waterfall that scaled her cheek and trickled off the tip of her nose, creating a wet blotch on the sheet. I wondered how they knew I wouldn’t faint. It was taking forever. And when the longest ten minutes of our lives were over, and after the required twenty minutes to stay very still ended, Marika grabbed the nearest thing, a box of tissues, and threw it forcefully at the wall where the doctor had stood.

So by the time we got to Strong Memorial and met that week’s squad of the always-rotating oncology team, Marika was already wary of doctors. Laurie called them the Roc Docs.
“Acute promyelocytic myelogenous leukemia, or APML, has an average survival rate of eighty-five percent,” they said, “depending on complications.” They wasted no time starting an intense chemotherapy attack. Three days later Marika developed her first serious complication. “Disseminated intravascular coagulation. DIC,” the Roc Docs reported. Marika’s blood clotted inside her blood vessels but she bled from everywhere else—every orifice on her body, through every sore, through the tender spot near her tailbone, under the retinas of her eyes, and into her lungs. Always squeamish around blood, I anxiously waited for the nurses to come back with more pads as I applied pressure through soaked gauze on one of her arms. Marika cursed through a towel she held to her nose and mouth. Leaning over to push the call button, I noticed she was lying in a puddle of blood. I did not pass out. An animated movie was playing in my head. It starred my headstrong daughter’s bone marrow that had produced lots of immature unruly cells that didn’t do what they were supposed to. Like those red cells that need to carry the oxygen, and the white cells which should be fighting infections. And her impossibly undisciplined platelets that were supposed to be clotting and stopping all this bleeding. I imagined millions of tiny-legged rebellious cells sneering, careening and carousing throughout every inch of her body. And I was thinking, Marika’s a rebel—clear to the core.

In the non-patient bathroom by the elevators, regarding myself in the mirror as I washed my hands, I saw old tired eyes. My nose usually bullied other facial features for attention, but now, small shuttered eyes glared back at me in cold detachment. I sighed and turned away from the ghostly reflection. Marika had gotten all the good looks in the family. Even sick and strung out by cancer, she still looked beautiful.

It was a showdown: headstrong Marika versus aggressive cancer. The Roc Docs pumped drugs with strange names through her. Daunorubicin Hydrochloride, Cytarabine, something called ATRA that sounded like a sneeze, and something I heard as “Harass-Sea.” There were established formulas for treating this leukemia. Complying with these evidence-based approved protocols was considered the path to beating cancer. In my head the medicines blossomed into yet more cartoon characters, like Sigh-terror-bean, Cytarabine. Donna-Ruby-Sin Hydrochloride. Reactions to these chemo cocktails could be deadly. And when the ATRA almost destroyed Marika but failed to put her into remission, they gave her arsenic instead. That one I knew. In my head I saw the dead shriveled-up mouse I’d found as a kid, on top of the mail pile. “Arsenic,” my Mom had frowned at the mouse, explaining, “I forgot to leave a holiday tip for the mailman.”

Marika had horrific reactions to everything. She retched, and wrenched in pain. I winced as she threw a cupful of pills down her throat with a fast splash of water.
“How do you do that?” I asked, remembering smashing tiny aspirins in applesauce for her just a week before. She shot me a look like I had food on my face.
“Mom. I’m a cancer patient.”

 

 

 

 

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Duetting: Memoir 11

Duetting: Memoir 11 Robin Botie of Ithaca, New York, photoshops words of her daughter Marika Warden who died of leukemia.

Before leukemia, home was the place we came back to long enough to grab what we needed, whether it was a nap, a meal or a gym bag, as we rushed out again down the hill and back into the world. We rushed and everyone around us rushed. We rushed to get our homework done, to get to school on time, to go to soccer practice or to the mall to pick up some last-minute sports tape, and a fast smoothie to tide us over. As a new special education teacher, I pushed to get through paperwork that piled up too quickly, while Marika scurried between schoolwork and part-time jobs at her favorite sushi restaurant and the gym’s daycare center. There was never enough time. Maybe we liked to eat out so much because it forced us to sit still while we waited for our food.

We were foodies. She baked. I cooked when I didn’t have too much homework from my SUNY Cortland classes. I danced in the kitchen to the muffled sounds of Marika’s music. Indie rock. Upstairs in her room, where she thought no one could hear, she sang over pre-recorded instrumentals. And in the car, stuffed with singing girls, the joyful un-muffled voices made me smile as we sped off to soccer games in neighboring counties.

On the soccer field Marika was an aggressive tank, stopping at nothing to get at the ball. I winced whenever she headed it, and cringed every time she barged into another player. Marika was fierce; she was fearless. So of course she was going to fight leukemia. Early on, a friend set her up with a blogsite, Marika Kicks Leukemia. Though she lived in a dense fog the first few weeks of cancer, Marika was set for battle. She would fight her disease, her doctors, me, and anything else that kept her from living her life the way she saw it.

Life, the way I saw it, should be beautiful and function flawlessly. I always believed I could design my way into or out of anything. For me, to design is to control. It is ongoing, like breathing. Each day, before the sun rises, I envision every possible scenario so nothing can hit me by surprise. To put the most harrowing things in manageable perspective, I draw and make endless lists. There’s always a ‘Plan B’ as I bolster myself for the worst.
“I’m not worrying, I’m designing,” I insist, when accused of being anxious. And designing always started at home even though I hated being alone at home, and Marika would rather be anywhere else. But by the end of May 2008, home was where we both yearned to be.

“When can I go home?” she asked countless times as teams of doctors filed in and out of her hospital room. First this had to happen and then that—there were obstacles. It was like Monopoly, one of those endless board games we always gave up on before we could finish. We were only at the beginning of our road trip. And my mind was already racing, working overtime to find “beautiful” and “flawless,” to put them back into our lives wherever we might land. But leukemia had wormed its way into the warp and woof of our world. Cancer hit home. The tides were broken. They’d collided. Soon I, too, could not “ride along to the same rhythm anymore,” as Marika said. We were hanging over the dark craggy cliff of the gorge when Marika nearly died two times in her first three weeks of cancer.

There was no way to design my way out of that.

 

 

 

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Duetting: Memoir 10

Duetting: Memoir 10 Robin Botie of Ithaca, New York, photoshops layers of a word cloud to illustrate the stae of her home at the time of her daughter's cancer diagnosis.Our home is Ithaca, New York. It’s a small town, a perpetually young town between Cornell University and Ithaca College. Bumper stickers proclaim, “Ithaca is Gorges.” It’s true. At the south end of Cayuga Lake, the largest of the Finger Lakes, Ithaca teems with frothing waterfalls and dramatic cliffs. Fractured rock continually crashes down these steep craggy gorges, occasionally smashing and rearranging the landscape.

To grow up in Ithaca is to be intimately familiar with Purity Ice Cream, the Stewart Park Carousel, swimming at Buttermilk Falls, and picking out pets at our local no-kill SPCA shelter. Teenagers in Ithaca attend the Winter ChiliFest, the Ithaca Festival, and the nearby Grass Roots Festival, yearly events that draw thousands to the region. Many teens dare to party on Cornell’s beer-flooded Slope Day, and sneak down to swim illegally at Second Dam, a popular swimming hole. They know their way around the ethnic eateries of Collegetown. Ithaca is environmentally, politically, socially, alternatively, and healthfully conscious. Bumper stickers peg Ithaca as “Ten Square Miles Surrounded by Reality.” It suits me. It’s the special place on earth where I fit in.

In 1976, I followed my first husband here when he landed a teaching job at Cornell. We bought land in the countryside and built a palatial home with a pond. There, I started Silk Oak, a small silkscreen-printing design business. I finally learned to drive. Too busy with our careers, we did not have children. After ten years we split, and I got most of the land. I built a small house and another pond. A few years later I married my plumber, the God of Heat and Hot Water. We made the house bigger, and had Greg and Marika. Then I gave away my 20-year-old home business so I could be with the children, to take them swimming, on vacations, to birthday parties and summer camps. No longer in need of the space for Silk Oak, we sold the house and built a third, smaller house with a third, smaller pond on the same land. And when that marriage fell apart, I paid a lot of money to have my second husband’s name erased from the piece of paper that said the house and the pond and the land once belonged to us both. But I couldn’t erase him completely. He was still the father of my two children.

I don’t believe you can own land, the land you live on, pay taxes on, and love. I believe the land owns you. The land I call home claimed me long ago. Here, high in the hills surrounding Ithaca, it feels secluded from the world but is only a five-minute drop down the hill to town. The green hills, the gravelly soil that tries to contain the ponds, the wind which causes frequent power outages. The woods and the abundant wildlife. The valley, and its view of Ithaca College where at each year’s end the dormitory windows are lit up to display the changing digits of the New Year. This land holds me when I’m home. It calls when I’m away. Wherever I travel, my inner GPS is set to the hill west of Ithaca, to Go Home.

To go home in the spring of 2008 was to follow the long driveway from the turn off State Highway 79, just over the crest of the hill after EcoVillage, our local intentional community. Home was the wreck we abandoned each weekday morning, fleeing to our schools. Marika’s was Ithaca High School where she was a senior; mine was Lehman Alternative Community School where, after years of subbing once the kids got older, I’d been hired as a special education teacher. Home was the sweet mess we gratefully returned to late each afternoon, to scurry away into our individual corners until dinnertime, our time together.

It was just Marika and myself then. My son Greg was in the army, always far away in Iraq or at Fort Lewis in Washington State. And there was Laurie. Our ever-present encyclopedia and sounding board, Laurie was always lodged in the phone, the landline. And in the message machine that still held a twelve-day-old recording of her singing Happy Birthday to Marika in her calm low voice, drawing out the final line. We always counted on Laurie for either a short version or a lengthy, but engaging, exposition of the truth. She always gave you choices. She could explain quantum physics in terms a preschooler would understand. She planted cannonballs in your gut, spouting twenty reasons to go see a primary caregiver about your searing pelvic pain. She made you cringe in horror describing the fish-flesh texture of tissue invaded by lymphoma. Or she could get you to relax in grateful relief, telling you the pain you were sure was ovarian cancer was most likely gas.

“Laur, is leukemia related to cancer?” I asked on that first night.
“What’s gonna happen to me?” Marika asked at the same time. Over the phone, sandwiched between Marika’s and my ears, Laurie said,
“Don’t you know anyone who has leukemia?” like everyone on earth has at least a dozen friends walking around hijacked by their white blood cells. Marika, in a squeaky voice on the verge of crying, said,
“Yeah. He died.”

 

 

 

 

 

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Duetting: Memoir 9

Robin Botie of ithaca, New York, photoshops the note her daughter wrote when she received her diagnosis of leukemia.Eighteen years old. I remember when I turned eighteen. Laurie, a year younger but in the same grade, was already driving. I was not. I never liked movement, didn’t trust I could survive skating, bicycling, diving, Kiddie City Amusement Park rides … I did not dare challenge gravity. Being alone, getting lost, drowning, … going downhill in any manner or losing control terrified me. There was no major trauma in my memory, but I lived in dread of the bad things that could happen. I might fall. The ground beneath me could breach. There could be blood and it would hurt. I could die. I was afraid of it all. Nonetheless, at eighteen I had a life. Laurie and I had friends, parties, places to go. We had jobs and were getting ready to go off to college. Home was smothering. So close to freedom and independence, we counted the days ‘til we could come and go as we pleased, ‘til we graduated and got away. At eighteen, with all my trepidations, the worst thing I could imagine was being stuck with my mother. In a hospital. For months.

“Mom, I’m going on a road trip,” Marika had announced the summer before the diagnosis, shortly after she passed her driving test.
“I don’t think so,” I’d said.
“But Carla and Silvie are going.”
I called Silviana’s mom to confirm.
“Paula, did you say yes to the road trip?” She had. And I saw nothing but white-flashing warning lights. Until I heard her plan. In our mother-daughter crowd, if there were valuable lessons for our children to learn, we would creatively bypass saying no. We came up with a compromise. Silviana, Carla, and Marika took their road trip to Rehoboth Beach in Delaware, six hours away. And Paula and I followed them, in Paula’s van, three to four cars behind. We all stayed in the same hotel. We pretended we were not related. Paula and I were given the room next to our girls, unbeknownst to them. They whooped and warbled all night long. Eighteen. Free from moms. Except at dinnertime when we’d meet up in restaurants. Dinner is always the time to convene in peace, over good food. No matter where you are or whatever else is going on.

Three weeks before the diagnosis, Marika had totally disowned me. And my rules. She had a forbidden party while I was on an overnight hiking trip. Coming home to the fumes of Lysol, I roared about the horrific state of my house. I didn’t acknowledge what must have been a gargantuan effort to clean up. More worried about the house than her safety, the ordeal of her trying to contain an out-of-control situation did not occur to me.
“Mom. So what. So my friends smashed the Adirondack chairs. So they threw the stove burners into the pond. They left a few cigarette burns on the deck. Get over it!” She had told me more than once to go fall off a mountain, go drown, take a long hike and get lost. “Get a life, Mom.” Cracks of white lightning stabbed me when she spoke like that. It used to make my hair stand on end for hours, but over the last few years my neuro-receptors had worn down. By the spring of 2008, I rarely even winced at her caustic comments.

Marika didn’t always act like a brat. Like two weeks after the forbidden party, on Mothers’ Day, I arrived home from a hike to a trail of Hersheys chocolate kisses leading from the front door to all over the house.
“Mom, you hafta follow the chocolates and read the clues to find your present,” she’d said, grinning proudly. And fifty chocolate kisses later I found Caesar salad, seafood linguini, flowers, and candles on the table. And a chocolate cake. “Sorry, it’s a Wegmans cake. I didn’t bake it, didn’t wanna make a mess.”

The first morning at Cayuga Medical Center, the staff asked Marika for permission to include her parents in the discussion of her health. Surprised at this new authority, she shot me a delighted glance. Caught totally off guard myself, I dropped my jaw and glared at the doctor, shocked that in New York, at eighteen a kid is “the adult in charge.” My daughter had the right to exclude me from being involved in her medical treatment. Marika held her stuffed Puppy in the crook of her IV-laced arm as she agreed to include her parents and Laurie. It was her first medical decision as an adult. She got that one right. So there I was, and we were about to start a journey. Except for short weekend breaks when her father and his wife relieved me, I would be right there.

And I would not want to be anywhere else. Nothing could keep me away. Not her cursing and calling me names, not blood or vomit. Not the prospect of late nights on emergency car rides to some who-knows-where hospital with frantic interruptions to find a restroom. Or her angry evil eye if I said the wrong thing. In my mind I was thinking, road trip. We were taking a long road trip. Together. I knew it would not be easy or fun now that she had good reason to be cranky. But it would not last forever. And it was my last chance to be there for her. With her. Before she grew up and moved out of the house completely. This was where I wanted to be, where I had to be.

 

 

 

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Duetting: Memoir 8

Duetting: Memoir 8 Robin Botie of ithaca, New York, photoshops purple bruises big as peonies on her daughter who died of leukemia.

“Mom! Get a life!”    
Marika always said this. It was her self-preserving way to end a losing battle, a clean exit that always rendered me speechless. Rolling her eyes, she would bark, “Mom. Get. A. Life.” My just-turned-eighteen-year-old daughter enunciated each word sharply. Like four smacks to my face.

On a spring evening in May 2008, soon after we’d had one of our regular disagreements, she shoved the phone at me. It was my sister. Again. The sister who’s a doctor outside of Boston, Marika’s longtime ally and confidante. She called Laurie every time monster-mom did something disagreeable, like say No. So I was ready to hear the retelling of my latest offenses.
“Put your glasses on and look at Marika’s face,” Laurie said, with no greeting, no preamble. “You’re looking for tiny burgundy snowflakes the size of a pinhead, around her eyes maybe.” I peered closely at my daughter’s pouting teenaged face and peeked at her neck and shoulders, aware we hadn’t been on touching terms the past decade.
“Laur, those burgundy snowflakes? They’re all over her. Hundreds. Everywhere.”

Geese were nesting. Hundreds of spring peepers, tiny frog-harbingers of the season, cheeped loudly into the night. Blooming lilacs perfumed the air as irises poked through growing bursts of greening foliage. And tiny burgundy snowflakes blossomed all over Marika. Along with purple bruises, big as peonies. Amid the budding and blossoming, disaster hit home. It had chewed on Marika for who knows how long. It shot darts through her head, planted renegade cells in her blood, rooted itself and grew.

I didn’t know. The past two weeks, when Marika mentioned headaches and being tired, I thought she just didn’t want to do her homework. But that evening, when she could no longer blame soccer for her excessive bruising, and couldn’t ignore the headaches or the fatigue, she’d phoned my sister. On the phone, from over three hundred miles away, Laurie could paint a clear picture of anything. Like petecchiae, the burgundy snowflakes running rampant over Marika.
“Get to the hospital now,” Laurie said, after listening to our dozen reasons why we wouldn’t be able to see a doctor in the morning. So we dropped everything and made a mad dash to our local emergency room, where Laurie phoned in a request for tests. An hour later she called back. And then—BAM! Leukemia.

It whacked the life we knew inside out and upside down.

Everything always revolved around Marika. She had a way of using up all the oxygen and energy within a considerable radius around her. She’s the one who got picked from the audience whenever a volunteer was called for. She was the one who came home with prizes: a bottle of champagne, a huge stuffed teddy bear from a local carnival. Her fierce determination landed her jobs and favored roles in school plays. Her smile, or maybe just plain luck, got her into situations where I could only shake my head in wonder.

I fretted about how soon she would leave home for college. I savored each soccer game and every opportunity to be a part of her life as she inched farther away, fighting to be free of me. The last stretched-thin string of glue tying us together was our connection to a strong tribe of mothers and daughters who, after years of play dates and carpooling, still got together for theater, out-of-town adventures, and dinners. Paula and her daughter Silviana came over with DVDs and chocolate the first night of leukemia, when the hospital sent us home to pack our things. Overcome with fear, Marika had called them. I was surprised to find them at our door. For me, oblivious to medical crises since Laurie always handled those, it didn’t register right away that here was something to be afraid of. We stayed up watching movies with Paula and Silvie all night before we left home again to enter our new reality of hospitals, doctors, and drugs.

The next morning, at Cayuga Medical Center, a mile from our house, Marika’s friends piled onto the bed with her. Her long hair shone, her cheeks blushed. She laughed. She had played soccer just the day before having next to no platelets and fifteen times too many white blood cells. This whole mess must be a mistake, I kept thinking. But I knew Laurie didn’t make mistakes, not like this. And she was working diligently now on the phone, with us, with the hospital, with her colleagues and resources in Massachusetts. What was leukemia anyway, I wondered? Something to do with bad blood? I didn’t understand a thing about what it meant but I felt my insides steel against some vague looming catastrophe. I sat stunned, immobilized. It wasn’t until the tall, dark storm that was Marika’s father lumbered into the hospital room, that I knew this was real.

 

 

 

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Duetting: Memoir 7

Duetting: Memoir 7  Robin Botie of Ithaca, New York, photoshops a tattoo onto a photo of the face of her daughter who died.The young friends, at their own celebration of Marika’s life directly following the memorial, mull around in tight groups. They touch the photos and memorabilia. They hug and hold each other. Several had gotten tattoos to honor Marika. Images and words etched onto arms and ankles, pigment mixed with blood. Some small part of Marika could be carried forever.

As soon as she was old enough to forego parental blessings, Marika got a cookie-sized Celtic knot tattooed onto her stomach. I’d always questioned my children, “What could you possibly put on your body that you’d want to have there the rest of your life?” Horrified by the idea, I would confront them using the word ‘permanent’ as if a tattoo was a perpetual stain on one’s presence. Not that anything, loved or loathed, could ever be permanent.

In May, two months after Marika’s death, for her birthday, I had her name tattooed on my left shoulder in Celtic letters. Greg, who’d already had a good deal of himself inked with warriors and skulls in homage to his fallen army friends, added a part of Marika’s Celtic knot to his haunting skin-story. Rachel got a Marika tattoo. And Kim. Then Taylor. And Julie. Even Laurie flew to Ithaca to get one from our now almost-family tattoo artist. The thought of our hearts and bodies indelibly etched with Marika was suddenly comforting. Bereaved mothers, other than wanting their beloved children back, want nothing more than to have their child remembered. So I loved those tattooed friends.

But at the end of June, one of Marika’s friends is found dead from an overdose. Several are heavily into drugs and alcohol. Marika had fought for each summer and for every breath in the end. Even though I know addiction is not a choice, I want to grab hold of her friends’ necks and shake them.
“This is it! This is your only life. It’s a time-limited offer. Non-refundable. It is a gift,” I want to shout. “How the hell do you get to throw it away?” I think of the parents, because to lose a child is to lose the center of your world. It is to lose your light and breath. “Look at me,” I wish I could say, “It’s June and I’m still frozen mud in midwinter. Like concrete. I died too. Would you do this to your parents?”

And then there are Marika’s words. Words I can’t ignore now that I’ve found them. She wrote this before she even knew she had cancer. Before there was any doubt of her not living a long full life. What am I supposed to do with these words? They scream to me:

“My words will hopefully live on long after I am gone. That is how I want to live. Forever. Words are immortal.”

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