Tag Archives: mother daughter relationship

Duetting: Memoir 26

Duetting: Memoir 26 Robin Botie of Ithaca, New York, photoshops a collage of a tiny book made years ago by her daughter Marika Warden, who died with cancer.

For my holiday gift I’d asked my son for a shooting lesson. So on the unseasonably warm afternoon of Christmas Eve 2011, Greg comes downstairs with two long guns. Trembling, I wrap up in scarves, earplugs, earmuffs and hooded jacket, and follow him out the door and across the lawn. He stops just short of the pond, props his shotgun against a tree, and hands me the rifle. Remington.22, he tells me. And then he shows me how to hold, load, and ready it for shooting.

“You don’t pull the trigger,” he says, “you squeeze it. You hug it with your whole hand.” Willing my eyes to stay open, I squeeze and shoot. It’s not nearly as loud or as jarring as I’d expected. Marika would have said, “LikeBAM!” Hardly drawing a breath, I shoot again. Bam! The sky echoes with each ferocious bark. Handling this loaded rifle, cradling it so close, and then blasting the air—LikeBAM! —I am spellbound, conscious only of being just on the cusp of control or calamity.

We had placed two targets against a large willow tree across the pond. The targets were a gift I’d painted for Greg. The one I’m to use is a cartoon image of a rotund woodchuck with a bulls-eye bellybutton. We train the scope, first focusing far, and then zooming in so every breath and movement I make is exaggerated in the scope, and the woodchuck bounces in a dizzying scene. When it settles, I hug the trigger. LikeBAM! With no movement of my target, no trace of a hit, I aim and shoot again. BAM! I continue to load the magazine and shoot. My woodchuck hasn’t budged. Greg fires his gun and with each shot creates small clouds of smoke before his target.

When our bullets are spent, we walk together around the pond to inspect the targets. Surprisingly, the bullets sped through mine without moving it and I’ve hit the woodchuck’s belly twenty-six out of twenty-eight times. Pleased with myself, I’m hooting and cheering. Until we remove the targets from the base of the willow.
“Oh. No,” I wail, “I’ve been shooting clear through to the tree. We’re killing the tree.”
“Oh, well. ‘Goes with the territory,” he shrugs.

Some things, like the differences in our respect for life and living things, will never jive. I say a silent apology to the tree and then follow Greg into the kitchen. He takes the two rib-eye steaks I got for our supper, pierces them several times, plants them in plastic zip-lock bags, and marinates them in Johnny Walker whisky. He pours two glasses of the whisky over ice.

“Did Marika ever shoot? What’s the best prank you ever pulled on Marika?” I ask, thinking I’ve got him relaxed and ready to chat. “What would you fight for or even die for?”
“Mom. Just enjoy the Johnnie Walker. Okay?” And then, “Do you still have my extra passport photo somewhere? I need it back. I’ve got a job in Afghanistan as soon as I get my papers cleared.” He’s leaving again. Whatever holiday I’ve been avoiding is now totally shot.

Later that night, on the first Christmas Eve without my daughter, the single drawer of the small night table next to my bed is stuck open. I rarely use this drawer but I had rummaged through it for Greg’s passport photo. Now the drawer is jammed and I can’t get it to close shut. I slam it and it breaks. When I wrench it back out, a tiny green cloth packet falls to the floor, and I remember a Christmas long ago when Marika had no gift to give me. She had scurried upstairs, bounced back down, and handed me this small pouch of jeweled sequins. Now I empty the contents into my hand. Sparkling butterfly-light jewels catch the lamplight that blurs through tears. The remaining sparse contents of the broken drawer lay on the floor. And in the middle of the small mess, bound with shiny red holiday ribbon, sits a tiny book written and illustrated by Marika in 2001, when she was eleven years old.

Book of Wonderful Memories. From: Marika. J.W. To: Robin Botie
1.The costume parade. You were there for me every step of the way! I’ll never forget your face when I got 4th place. You were so happy! 2.That one teddy bear that you would look at when we were fighting and tell me a story of you. Mom … 5.Even with the most boring books, it seems so exciting with your voice. … 6.When I’m scared you are always there for me … 8.Always loveing even when I’m a brat.

Mareek! Are you here? I cry out. Are you helping me get through Christmas? What the heck am I doing in this drawer anyway? It’s almost midnight and I’m holding the most precious gift, now received twice over. Why does it feel like you’re watching me? Sometimes it’s hard not to believe in ghosts, in after-life. Here I am, holding this tiny book you made ten years ago, before all the road trips, before cancer. Before our mother/daughter divide. Ten years ago when you adored me—Maybe you never stopped adoring me—Maybe you just stopped showing it.

She’d made me a book. And now I am making a book for her. She wrote. So I’m writing. Words are my new medium and I’m using them to paint our portrait, mixing words like I used to mix colors. All the sweet or savory, whispering or roaring, bland or bewitching words that dance in my mind. Like : meandering, infinitesimal, crimson, petechiae…. Reading my book aloud at the Feed and Reads, occasionally I glance up from the pages to peek at my audience, their jaws dropped and eyes begging me to continue. My gift to Marika, I tell myself. Really, though, she has gifted me, and is gifting me still.

My first manuscript is a plot-less lament to my dead daughter. But that doesn’t matter. Because, daily, I lose myself and find myself in what I write. Some new determination to live, lives on. And I feel hope. It’s back. And hope implies future. So I continue to write, and look forward to the sharing. And I love my book like it’s my daughter.

Duetting: Memoir 24

Duetting: Memoir 24 Robin Botie of Ithaca, New York, photoshops Andrea Riddle and Marika Warden wearing headwraps and hoop earrings, as cancer patients.

There is always some anxiety as I wait for guests to arrive. My friends are so different from one another. They range from Marika’s age to my mother’s age. For the Feed and Reads I’ve gathered them from my hiking group, from foodie endeavors, former workplaces, and past mother-daughter relationships. One friend’s daughter will join us, and also a woman I’ve never met who felt linked by loss. And Rachel. If I can reach her.

“Hey Rachel, where are you? You haven’t called or emailed me in over a month. I’m getting worried,” I leave multiple messages on her cell, “You’re coming to the Feed and Read aren’t you?” Rachel usually communicates with confidence, like she’s the Mayor of Cool. But when I last spoke to her she’d sounded almost suicidal. Too wrapped up in my own pain, I’d never really considered how Marika’s death affected her best friend. 

Soon I’m more warmed than worried, looking around the first assembly of my readers. They introduce themselves and talk like they are old friends. And in the months to come, they will be. In their courageous effort to help me, they will discover familiar connections and create new ones. But there are two who are missing. One is Andrea. She had often “borrowed” my children over the years, spoiling them and stretching their minds. She’d visited Marika several times in the hospital. Andrea had given me my first teaching job, knowing what I could do long before I did. Two months ago we walked in the woods as yellow leaves fell. What kind of horrible joke was it that she was recently diagnosed with cancer herself? I wanted to be there for her. But wearing her head wrap and hoop earrings, she so resembled Marika, I could hardly look at her. Now Andrea is too sick from chemo to join the Feed and Reads.

The doorbell rings and I run to answer it. Rachel.
“Sorry I’m late,” she says, all bubbly at the door.
“Look at you!” I gush. “Your hair. You look adorable. You look – happy.” She looks like she owns the world and has just walked into her own birthday party. Her makeup and manicure are gone. And her hair is shaved off except for a bit at the top.
“It’s a Faux-Hawk,” she says, brushing at her almost bare head. “Do you like it?” It’s freezing outside, but she’s wearing a wife-beater undershirt, neon Michael Jordan sneakers, and low rise baggy khaki shorts that might be her dad’s. She looks like the beloved janitor from some old TV show. But she still has on the fragile silver necklace that was Marika’s.

“I’ve been sober for fifty-six days,” Rachel announces at the table as we feast on butternut squash soup, cheeses, salad, sushi, and shrimp cocktail. She proudly shows off her tattoos. One particularly huge one spreads across her ribs on her right side, “Be strong when you feel weak,” a quote of Marika’s. I’m very aware of how different Rachel is, from before, from the others. And I’m proud of her, like she’s mine.

When the meal is over, we move into the small living room for the reading. A photo of Marika sits on a tiny table next to me. Next to it is a box of tissues. And pencils and notebooks, for comments.

The Feed and Reads will go on for over a year. Whenever I have a couple of new chapters to share we will feast. My work is the focus at these gatherings, but everyone here knows grief. Before and after I read, we share our stories.

“It was just like that for me when my husband was in the hospital, before he died,” says Jane, the friend-of-a-friend I hadn’t known before. Next to her, Barb, who will host most of the Feed and Reads, sits stunned, holding a tissue in mid-air between her lap and her face.
“After my husband died I wrote him letters too,” says Annette, whom I’ve known over twenty-five years, “It was a powerful healing tool.” Celia, who remembers everything, brings the group back to my story saying, “You forgot to mention the prom. You have to write about the prom.”

It’s as if they all know I need them here. They somehow sense the best way to support a grieving parent is to show up and listen. So I keep writing and rewriting. To read aloud my daughter’s story. All a bereaved mother really wants is for her child to be remembered. For the rest of my life I will listen patiently while friends ramble on about their kids graduating, getting their first real jobs, getting married … and there will be no more news of Marika that I can contribute to the chatter. But here is my time to tell about my beautiful brave girl, her accomplishments, and her extraordinary passage through the bloom of her short life.

 

 

 

 

 

Duetting: Memoir 23

Robin Botie of Ithaca, New York, photoshops a collage of her daughter's ashes in an effort to heal her broken heart.

In late July 2011, I bring home the sealed black box containing my daughter’s ashes, and assemble a small altar in the living room, above the TV. Around the box I place photographs, daisies, chocolates, Marika’s stuffed Puppy, and two Lonely Planet Guides to Australia. The first summer without Marika is half over when I finally end my travels. I hadn’t found her anywhere else in the world. The box is where she lives now. Each day I stand before it wishing Marika good morning and goodnight. Her ashes are not just dust. The ashes are her, humming and dancing inside the box, watching me come and go.

With Rachel’s help, I clear out most of Marika’s bedroom in the house. Then, in a reckless determination to purge, I attack the attic, my son’s sprawl of accumulated stuff, and my own closets. I sell off my father’s stamp collection and deposit carloads of clothing and toys at the Salvation Army. It all has to go. The only things I want are Marika’s words. And once they are photo-copied, I send the original journals off with Rachel to give to Marika’s father. Then Rachel and I empty Marika’s bedroom at the apartment she shared with friends.

“What’s up with you?” I ask her. Rachel looks like a wounded animal. “Are you okay?” My eyes are drawn to the silver Tiffany’s necklace she wears, the one Laurie gave Marika for graduation.
“I’m not with my boyfriend anymore,” she says.
“Should I say sorry or congratulations? Well, either way, congratulations. ‘Cause you’re with you.” It’s what I say to anyone who tells me she’s survived a separation and is suddenly single or alone. It’s what I tell myself: You still have you. But I don’t recognize this as a gift yet. I feel I’m only a ghost of the person I was before. And it’s still hard to face people. I’m sure there is whispering and pointing just beyond my earshot and sight. Like last year, at a party, when my friend Andrea nodded discreetly in the direction of an acquaintance, “Do you see that woman? She’s been through hell and back, and she looks it.” I’d regarded the blinking, quivering woman who did indeed look like she’d fallen to Earth from outer space, breaking the sound barrier, her heart, and every moving part of her in the fall. Is that what I look like now? Floundering and crazed?

After Rachel and I bag the last of Marika’s shoes, I wash my hands singing “Happy Birthday” twice to Marika, and consider the strange haunted face in the mirror. Red rheumy eyes stare back. Graying roots jeer at me. Ugh. This has to go too.

Then, in early August, on a Sunday morning hike with Suki and friends, I fall in a slippery stream bed, and break my wrist. Right away I know it’s fractured although it is the first bone I’ve ever broken.
“Go. Get back to enjoying your Sunday,” I tell my friends who take Suki and drop me off at the hospital. “I’ll be fine.” But I am not fine. It’s my first time back at a hospital since Marika died. Waiting alone in the ER, I break down in howls. All the tears I had stuffed away for months each time I bravely faced the world beyond home, come gushing out of me. Marika’s supposed to be here, not me.

And then, as I bumble around the next several weeks in a cast, I suffer all sorts of snags. Mishaps. Glitches. Calamities. I get the flu. I mislay bills and incur late fees. By a hair, I miss hitting a deer on the road. Everything I cook burns. My keys disappear. My house is plagued by deferred maintenance. Skunks move in under my deck, and the pond is overrun with muskrats. I can’t sleep nights. And at the end of September, I get a traffic violation for failing to pull into the far lane when passing a blinking, parked cop car.

“Mom, you’re such a wimp,” I hear. And I know I’ve got to do better. So, I begin to drag myself out of the house and down the hill to the community that loved Marika. I start co-leading Chronic Disease Self-Management Workshops for the Tompkins County Health Department. I join a six-week hospice-sponsored group, Singing Through Your Grief, where mourners are supported as they share stories and sing. CompassionNet, a program serving New York State families of children with life-threatening illnesses, offers to pay for life coaching sessions.

“Why don’t you write a book?” asks my life coach, Marci Solomon.
“I would never,” I say, scrunching up my nose like Marika did when I suggested she wear shoes and socks in winter instead of sandals. But I enjoy writing responses to the questions Marci asks each week. And I eagerly do the homework from the Hospicare singing group.
“Your assignment is to pick a prompt from the list and write what you would tell your deceased loved one,” say Jayne Demakos and Kira Lallas, who lead Singing Through Your Grief. At the session that follows I read aloud what I wrote. A reverential silence followed by exuberant praise energizes me like richest chocolate.
“I will write for five hours this week,” I pledge at a Chronic Disease Self-Management workshop. Even the co-leaders are required to make and complete Action Plans, weekly contracts to do something for themselves, and then share their successes or failed attempts at the next meeting. The following week, “I will write for ten hours.”

It was just letters to Marika at first. Like on the TV game show Jeopardy, I teased out questions from her poems and songs, questions I wish I’d asked during our time together. What’s it like to be twenty and have cancer? What do you fear? How does cancer affect your relationships? … Memories swell up inside me. Words churn in my head. And when all the commotion is captured onto paper, I experience a thawing, a lightening. When I read aloud what I wrote, it becomes part of me. It makes me feel stronger. And it makes me sure this is not something I want to do on my own.

“Hey, Rachel, I’m writing a book,” I say over the phone. Then I call a dozen other friends. “I have an idea,” I say. “I’ve been writing a book and want to test it out. I want to do a series of simple dinners where I read aloud. Chapter by chapter, as I write. I’m calling these dinners ‘Feed and Reads.’ Would you come?”

It is so exciting to enlist listeners. With thirteen positive responses I begin two small groups that will fuel my energies over the next year with their kind and brave commitment. December starts out dreary. But I write for hours every day. Often by candlelight. For Marika, and now for the women who will gather together to hear me. Addicted to light, I line the driveway with solar-powered garden torches. I frame the mudroom door with rows of red mini-lights, and plant battery-operated plastic candlesticks in the windows up and down the house. I buy hundred-watt bulbs and full-spectrum therapy lamps to write by. Sweet light blossoms all around me, breaking the darkness as I write. Warm welcoming lights brighten the winter nights, the empty house, the long lonely driveway, and my dark heart. They beckon, they plead: come to me, come home.

 

 

 

Duetting: Memoir 21

Duetting: Memoir 21 Robin Botie of Ithaca, New York, photoshops an image of a soldier, remembering that each warrior has someone somewhere to whom she is a hero.The son who returned home from Iraq was, in many ways, a stranger. Always a man of few words, Greg had seen and done things he wouldn’t talk about. But he also discovered people. He came home connected to friends all over the country. It seemed to start early on in his army career, maybe after eating at the General’s Table.

“Mom, they made us march 16 miles today. 3 more days until we do simulated attack. I won 10 rounds of hand-to-hand combat. I passed bayonet training,” he wrote home, all during boot camp. Except for the drill sergeant doling out disciplinary actions, Greg never mentioned other people. Then, several weeks into basic training, the drill sergeant directed some of the privates in the platoon to do an extra detail. Tired, hungry and sore, the soldiers were taken to the general’s house to collect the furniture and clean up from a party held that day. When they got there, they found leftover prime ribs, shrimp, eggrolls, sandwiches, and cakes. They were given an hour to clear the place and get rid of it all.
“Any way you can,” the drill sergeant barked before he disappeared.
“Yeah. So I ate at the General’s Table today,” Greg told us with glee over the base phone he’d waited on a long line to use. After that, in addition to filling us in on his own achievements, his letters and calls were rich with stories about his fellow soldiers. His communications came alive with the adventures of Stapp and Williams, and the trips they took to steak houses and shopping malls, and to New Orleans to see Mardi Gras. They wrote to each other’s sisters, and Greg’s social side began to blossom. The shy, lone warrior played golf, fished, cooked meals, and went out with friends. And good shared times continued with Marika when he came home on leave.

My returning warrior picked up some questionable new behaviors in the army. He now slept only on the couch, with the television blasting, the computer and lights on, and everything he held dear within arms’ reach. His bedroom became a storage closet for his collection of knives and guns. He chewed tobacco. He drank. He took extreme pride in his precision barbecuing.
“Mom, you gotta try some of this,” he offered when I came home shortly after him one Friday evening, while Marika was away at college.
“No thanks. It looks like the squirrel you shot in the driveway last week.”
“No, it’s barbecued rabbit steak. Fresh today. Marinated in good Irish whiskey,” he said. “With Rufus Teague Pork Rub.”

To this day, my son skillfully manages the searing and flipping on the grill. He scrapes the iron grates afterwards. He takes care of the grill, his guns, and his people. His friends and those he works with mean the world to him and he will drop everything, lose sleep, lose money, and defy death and danger to take care of them. Most amazing to me, my soldier keeps in touch. And it surprises me that he always comes home, though the length of his time here grows shorter and shorter as he hones in, ever closer, to the what and where of his future. I watch with bittersweet pride as he becomes a veritable citizen of the greater world, no longer an incidental by-product of small town Ithaca.

I know soldiers. They don’t fuss over their misfortunes. They keep busy with other things. When his gut ached, Greg would find the Tums and a friend to play golf with. When his Achilles tendon got torn in a boating accident, he threw away the crutches, changed his own dressings, and went out shopping at the mall. When stung by a girlfriend, he’d go out drinking with the guys.

Home from the base early one week, he strode into the kitchen with three huge racks of ribs, two jars of barbecue sauce and a twenty-four ounce can of beer. He mixed it all together in my largest broiler pan and set it in the fridge. For days he nursed it, turning the racks and redistributing the sauce.
“Who’s gonna eat all this?” I asked, thinking I would arrive home to a party any time. On the third day, grinning, he put the whole thing in the oven on medium-low for three hours. Then he put it on the grill while he mixed up a batch of barbecue-type beans. A new girlfriend showed up, dressed and made up like they were going out. The next thing I knew, the three of us were eating dinner around the kitchen counter. We polished off most of it.

But one night in December, he came home from the base long after I’d gone to bed. He noisily climbed up the staircase, and before I could fall back to sleep, I heard a loud thud overhead. I ran upstairs. He’d fallen from the couch. I could not wake or move him.
“Mom, I’m okay,” he murmured, not opening his eyes.
“Are you sure you’re okay? You’re gonna sleep on the floor?”
“I’m okay,” he said again, and started to drift away into sleep. “Oh yeah, I’m going to Afghanistan in three weeks.” And then my heart fell through the floorboards.

Every life is precious to someone. Each warrior has a mother, a sister, or someone somewhere to whom he is a hero. The warrior who lives under my roof is a seasoned soldier whose respect for life is vastly different from my own. Marika and I were proud of him; we were scared for him. Whenever he deployed, we wore duplicates of his dog tags he’d made for us. When he was sent to Afghanistan in the winter of 2009, Marika steeled herself for her brother’s demise. She soldiered on at Clark University while I kept the computer on late nights waiting for the familiar chirping sound of his Instant Messaging.

Over the phone, Marika sounded strong. On maintenance chemotherapy to stay in remission, she was taking ATRA in pill form. ATRA, the drug that gave her seizures and nearly killed her months before was now her main weapon against leukemia. It gave her nausea and headaches the weeks she was on it. But the last bone marrow biopsy showed her to be totally clear of leukemia cells. If she could just stay on ATRA for two years, cancer could become history. She called from her dorm room on a Saturday night.

“Mom, I’m taking a Red Cross class so I can be a lifeguard at camp this summer.” One of my soldiers was becoming a lifeguard? For a second I smiled inside myself, thinking maybe she would learn how it feels to watch over lives that could wash away in a blink, maybe she’d experience adrenaline pulsing through her, overriding all fear and allowing her to venture into dangerous waters to save a life. But I didn’t let this distract me.
“Great,” I said. “Are you taking your ATRA?”
“Mom. I’ve got it under control. Mom, Jake got sick again. He’s got my type of leukemia now. He had to leave school early,” she said. My children always said “Mom” before they said what they had to say. It’s like they had to awaken me, make sure they grabbed my attention. But my attention was already captured by this news of her friend getting sick again. Jake would occupy a good chunk of my thoughts over the next months as I regularly sent out silent prayers for him and his family. After all, you send your kid off to college after cancer and you think you’ve accomplished something. You think you’ve finally won the war. You don’t expect to be taken prisoner by cancer all over again.

“I’m transferring to Ithaca College for next fall,” Marika added quickly.
“Uh, are you sure you want to do that?” She had caught me off guard. Part of me was excited that she might be back in Ithaca; but I was torn because I wanted her to be a normal healthy kid loving being away. Isn’t that what she craved? To be free of me and home? I thought that was what all my soldiers needed.

 

 

 

 

Duetting: Memoir 17

Duetting: Memoir 17 Robin Botie of Ithaca, New York uses Photoshop to illustrate how caregiving is like lifeguarding.

“When can we go home?” This was the one question I could always get away with in the hospital. It was our routine: ignore the nasty details, and push through to whatever we needed to hear in order to breathe. “She wants to know when she can go,” I’d say, but really, I, myself, hated being stuck in that creepy sunless hospital where I was turning languid and pale, sitting day after day immersed in my Ken Follett novel, World Without End. I was just as desperate as Marika was to be out of there. With luck, this second round of chemo would bring her blood counts back to normal and get her into remission. But Marika now had yellow skin and eyeballs. She was miserable with a head cold, fever, and stomach aches. Two weeks before, the Roc Docs discovered her inflamed gall bladder, but the surgeon couldn’t operate because she had no white blood cells to fight infection and too few platelets to stop the bleeding. Instead, they stuck a drainage tube in her side. It was now grinding against her tolerance.

“Mom, this sucks,” she yelled at me like it was my fault. We were constantly working to keep the tube and bile collection bag tied up in place with elastic bands and pins, tape, or anything that would hold until they could remove her gall bladder.
“Mom, where’s the tube?” she suddenly bellowed at me as if I’d taken it.
“What do you mean, where’s the tube?” We’d focused on little else the past week.
“The tube’s gone,” she said urgently.
“What did you do with it?”
“Maybe it fell out when I was in the vision clinic?”
“You left the tube in the vision clinic?” I said in an exaggerated accusatory tone, trying to stifle a giggle. We both broke out laughing at the thought of some unsuspecting half-blind patient finding the bile tube sitting abandoned on a waiting room chair. We needed to laugh. Cancer had become a summer-long project and the path to remission was riddled with setbacks. It looked like it was far from over, and Marika was tired of being a cancer patient. I was just getting the hang of caregiving.

Being a caregiver is a lot like being a lifeguard. Except as a caregiver I had just one swimmer I didn’t dare take my eyes off of. And she’d already sunken a few times, so I told myself I knew what danger looked like. Still, the lifeguard in me rarely rested.

“Any minor cold you pick up, with your compromised immune system, could turn into pneumonia. A friend’s pinkeye or cough could end up in septic shock for you. A virus could lead to major organ malfunction. Any stray little fungus or bacteria could kill you. So, no sushi,” the Roc Docs reminded us. Marika wanted sushi takeout for dinner. She always wanted sushi.
“Oysters?” she tried again in a tiny voice.
“How about cooked sushi? You know, the ones with cooked shrimp,” I contributed, trying hard to keep peace and establish common ground. Doc Phillips conceded to that and my eyes checked in with Marika’s.

“Can I get a pass to leave the hospital for a few hours?” she pushed. She was always pushing. I went for the compromises while she straight-shot for the prize. “Can I start college next month?” It was the big question of the summer. It was what we all prayed for, but didn’t dare plan on or shop for, in fear of jinxing the whole possibility. There was still too much that could completely dash that dream. And we never knew where trouble would come from.

“There’s no more cytarabine. So we’re sending you home. We’re sorry,” the Roc Docs announced days later during morning rounds. “We tried to get some from other area hospitals but there’s a nationwide shortage.” My eyes met Marika’s for a brief second before turning back to the doctors in disbelief.
“But that’s my main chemo drug now,” Marika whimpered.
“We’re sorry.”
“Call your dad, I’ll call Laurie,” I said, not fully digesting the significance of the situation but aware this was news they would want to know about. A good lifeguard is always ready for the unexpected; one never knows when it’ll be necessary to leap in and pull somebody from disaster. I made the arrangements for a homecoming, and packed up efficiently as nurses removed Marika’s IV. Then, suddenly, two young residents charged into the room out of breath.
“They’ve located the drug in Buffalo at Roswell Park Cancer Institute. It’s being sent over now.”

By the time the IV team returned to go through the tedious process of locating another vein on Marika and replacing the IV, I was wilted over the foot of the bed.
“Mom. Mom!” She blasted her eyes at me and bucked her chin toward the technicians surveying her arm. I’d almost forgotten my opportunity to squeeze her hand.

 

 

 

 

 

Duetting: Memoir 13

Duetting: Memoir 13 Robin Botie of Ithaca, New York, photoshops a picture of her daughter who died of leukemia to illustrate the confusion and chaos that follows the initial diagnosis of cancer.

The Roc Docs ordered another bone marrow biopsy. It was to be done by two residents, girls who looked no older than Marika. By then I knew about the trickiness of this standard bedside procedure, the need to get the right angle, the chances of missing the exact spot from where the marrow fluid was to be drawn, and the possibility of not getting enough material extracted. We asked about their success rates and the tools that were to be used. The docs assured us it would be nothing like the procedure performed at our local hospital. We agreed to give the resident-girls a chance. But if they didn’t get the sample they needed in two attempts, it would be quits.

They marked the spot with an X, and showed me the door, but Marika grabbed my hand and wouldn’t let go. Grateful she wanted me, I took my position at her shoulders once more. The resident girls missed at their first try. Wrong spot, no fluid. Marika produced a roar like a cornered tiger. They focused on their mark once again, and the world stood still. I watched Marika scrunch her eyes and grit her teeth. Three women hung over her, each in breathless silence. And suddenly one of the girls’ cell phones rang.

“Enough! I’m done. Get out,” Marika screamed at all of us. And then Marika made her second sound medical decision as an adult: no more biopsies without anesthesia. “I want Ver-sed,” she announced, coached over the phone by Laurie. Magic words. Biopsies with anesthesia meant no more bedside biopsies. And no biopsies by residents. The Roc Docs shrugged and shook their heads, surprised that insurance would cover it. So from then on, all Marika’s bone marrow biopsies and spinal injections would be done in the radiation department, with anesthesia, by an angel named Iris.

A week later we were twelve days into cancer, and Marika’s excessive bleeding was barely under control. I reluctantly left her to return home for a job review, the timing of which was not negotiable. Driving home from the hospital, I considered the logistics of the next day: the appointment to revive my neglected hair, the search for my pin-striped interview suit, and time to do laundering before returning to Strong. I recalled driving Marika to her first job interview a year before. She had worn a strappy tanktop with jeans, and heavy eye make-up.
“That’s what you’re wearing for this?” I’d asked, glancing over at her and grimacing.
“Mom, it’s for a camp job. It doesn’t matter,” she’d shot back. And she’d gotten hired, on the spot, charming them into hiring her for more money than was originally offered. She had that effect on people. I wished I had that. I approached interviews like I was going before a firing squad. I had to work hard to hide the sheer terror blazing in my eyes, my shaky speech and hands.

My cell phone rang and I pulled off the road. An unfamiliar voice gabbled on, something about bleeding lungs… adverse reaction to drugs… respiratory failure… admitted to the ICU.
“Is it serious?” I asked, still oblivious to the signs of disaster. “Should I turn around?”
“Well, your daughter has just been sedated. And intubated. And put on a ventilator,” she said in a voice that sounded like there was a “duh-uh” at the end.
“Sedated? Intubated? Ventilator? What does all this mean?” I asked, completely clueless about drugs that knock you unconscious, breathing tubes and breathing machines.

I turned the car around. And when I got back to Marika, now moved to a glass-walled room in the ICU, I learned they’d almost lost her. Respiratory failure. My daughter had stopped breathing. She was now taped and tubed, strung up and surrounded by chrome trees of drug-filled plastic bags and noisy pumping apparatus that inhaled and exhaled for her. To keep her alive. My own breath was stuck in my stomach. I watched the ticking monitors. We were tumbling yet deeper into the nightmare, into the wilds of cancer.

At six the next morning, when Marika was somewhat stabilized, after my colleagues had confirmed that indeed I must attend the review, and after a long night trying to rest on a tiny couch next to her bed, I left her again. I drove the two hours, got a fast haircut, threw on my suit, and pulled off the interview in a daze, and then traveled back to Rochester still wearing my interview outfit. Too anxious to wait for an elevator, I climbed the eight flights of stairs to the ICU, and arrived breathless at her bedside. Panting, I gratefully grasped her feet.

Days later she was taken off the respirator and transferred out of the ICU. And I was told I could keep my teaching job. Sore from the breathing tube, Marika could hardly talk or eat. But the drugs were working. Her bruises were fading, and her skyrocketed white blood cell count had plummeted to an acceptable level. Everything seemed under control, so when her father arrived I left, again, for the weekend. At home, exhausted from the difficult week, I had just allowed myself to relax when I got the phone call.
“She’s okay. Now. I was right there with her,” her father stated calmly before choking up, “Out of nowhere. Fast. Marika had seizures. Two horrific seizures. They almost killed her.”

There were no words. No breath. No grasp of time or gravity. There were no speed limits or miles or towns between home and the hospital in Rochester. Somehow I drove, and landed, stunned, back in the ICU. I crumpled at the end of her bed too shaken to do anything but clutch her feet and rub. She could have died. Twice, she almost died, and I wasn’t there.