Tag Archives: cancer diagnosis

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.

 

 

 

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.