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 22

Duetting: Memoir 22 Robin Botie of Ithaca, New York, photoshops her daughter Marika Warden as a fierce warrior.

Sometimes I think of our time in the deeps of cancer as one big tumble. Cancer had barged into our home felling one thing after another, like the toppling of dominoes. Everything faltered and failed. Respiratory failure. The falling hair, the fallen-too-low white blood cell counts, the failing immune system. Prone to falling, Marika fell from a hospital bed, she fell down a staircase. She fell in love, she fell out of love. She fell in and out of remission. We both fell into depression. We fell down together in a parking lot near the hospital when I failed to support the weight of her larger frame. Falling behind in my work as I commuted back and forth to keep my job and keep at her bedside, I fell asleep at the wheel one day and ended up in a ditch. Terrified, I kept driving. Scared, worn out. Dangerous. My life was crumbling. And then the sky fell completely.

The chemo failed. We were all fooled. Life and the future are deceptions. Normal, if there is such a thing, doesn’t last long. Everything changes, and you can’t get back to how things were before cancer clobbered the world you once so obliviously flitted about. By the end of June 2009, Greg had been at war in Afghanistan for six months, my father began his own battles with failing health, and I got cut from my teaching job, just in time for Marika’s relapse of leukemia.

And maybe things wouldn’t have ended up the way they did if she hadn’t failed to stay in compliance. That’s what they called it, “failure to stay in compliance.” At some point she’d stopped taking her meds. Who knows why? Marika stopped the chemo maintenance pills that kept her cancer at bay and could possibly have cured her. The pills that might have been the happy end of the story. And she fell to her leukemia again. Her leukemia. As if she owned it, controlled it, and could just get rid of it. But now it owned her, and it would own every last aspect of her life.

“Robin, how many pills are left in Marika’s container of ATRA?” Laurie phoned, flummoxed, one day near the end of June. Laurie’s method of coping with the unknown is to tear it apart, examine every inch, and understand it.
“Fifty-five ATRA left,” I reported back to her ten minutes later. “Why?”
“Well, I called the two pharmacies she uses to fill the ‘scrips, and the math doesn’t add up. She must have quit taking the pills around January,” she said.
“Did she say anything to you?” I asked, knowing that Laurie would come right out and ask Marika why.
“She wouldn’t talk about it,” she said, sounding brokenhearted. Laurie was beating herself up about the pills, like she could ever have known or been able to do anything about it. What was Marika thinking? She’d dropped her weapons. Was she surrendering to cancer? Or was she pretending it just wasn’t there?

Marika, the intrepid warrior. That’s what someone on her blog site called her. My mother called her “a tough cookie.” Laurie dubbed her The Complication Queen since every bit of her, body and spirit, challenged any administration of new drug or routine procedure, resulting in countless complications. Laurie also said Marika was her own worst enemy. She fought blindly, sometimes recklessly, to live life on her own terms. People say you don’t fight cancer; that you learn to live with it. No, this was a battle. We were at war with cancer. I’d look at my daughter and marvel at how brave she was. In the hospital, I tried to be tough and strong so she could feel safe. When she was down I pretended to be a soldier standing guard over her, keeping long vigils. Then on Fridays, I’d say goodbye and go off again and again and again. And on Sundays, I’d march back up to my beautiful trouble at Strong. I pushed myself to be brave. For her. And maybe our war with cancer brought out the best in me. Maybe cancer was my General’s Table. Because that’s when I discovered I wasn’t alone. There were people, beautiful warm-hearted, courageous people, everywhere along the way. I was fighting in good company.

“I’m in Strong,” Marika said over the phone on the last day of June 2009, while I was stuck at Fort Lauderdale Airport, returning from a visit with my father. She said “in Strong,” not “at Strong.” When one is “at” the hospital, it means she’ll be home by dinnertime. But Marika was IN Strong. Again.
“I’m on the way,” I told her. And waiting for the plane back to New York, nothing in that airport was moving fast enough, now that we were soldiers at war once more.

 

 

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 20

Duetting: Memoir 20 Robin Botie of Ithaca, New York, photoshops a peaceful loving moment between her children when they were young and constantly in competition.

They are out there, all around us, even here in small-town Ithaca. Around every corner, at the mall, strolling on the Commons, in Wegmans picking through the tomatoes. There are more and more scarred young women with denuded brows, wearing head-wraps to hide tender skulls, pristine and bare like babies’ bottoms. Is it just me noticing the increase of these brave veterans of private wars? I can picture entire armies of these women, these chemo-hardened warriors. At one time I would turn away, unable to look at anyone who looked like a cancer patient. But now, as when my son Greg joined the Army and I’d practically hug anyone I encountered wearing digital camouflage, I find myself drawn to these cancer-surviving women. They are my cousins, my family. We are blood relatives: I’m giving blood; they’re getting blood. They are my tribe, along with their mothers.

Blood donor, mother of two, Marika’s Mom, Army Mom, lifeguard, caregiver, lifelong student, artist, small business owner, teacher … in February 2012, I consider my various past roles, wondering who I am now and what’s next. Since my daughter died, women reach out to me; some I know and some strangers. They tell me they lost a son, or their daughter died too. They hug me. Welcome to the club, this is forever, they say. Bereaved Mothers. Our stories have similar endings. Our bonds are quickly cemented solid. Unlike the land-mined deserts materializing between me and all my friends who still have daughters. They are taking them to Cancun or Paris, while I am putting together a solo trip to Australia to scatter Marika’s ashes. My life is out of whack. I’m not prepared for any of this. How can I begin a new journey? Begin anything?

In the fall of 2008, Marika had wanted to hide her scars, the telltale signs of a cancer survivor. Hairless, exhausted, foggy from the chemo—it was not the way she wanted to begin college. But she needed to get on with her life. And I had my teaching job to get back to. The summer that wasn’t, was over. We thought normal was just around the corner, the cancer gone. So we focused on the logistics of her living in a basement dorm room, using a shared bathroom, and being in contact with thirty-five hundred students coming down with countless ailments just when her white blood cell count was due to crash from the chemo. She carried on with her classes wearing headscarves, make-up, and large dangling earrings, pretending to her new friends and teachers that she was not sick. Except to her friend Jake.

“Mom, I met that guy. Jake. The other freshman who has cancer,” she called during the first week. “On Saturday we’re going to Boston to- ”
“Did you go for your blood draw Monday?” I interrupted, meaning to get back to Jake, whom I’d heard about and hoped she would meet.
“Yes,” she barked back.
“Did you tell your instructors you’ll be gone for two weeks? Will they email you the notes and assignments? Are you eating?”
“Mom!” Over the phone, from three hundred miles away, the sound of my name was like gunshot. Retreating, I stifled my barrage and forgot to come back to the topic of Jake.     

Shortly after Marika got back to school in Massachusetts, brother Greg transferred from his army base in Washington State to Fort Drum in northern New York, about three hours from Ithaca. He drove home each weekend in less than two. The oncologists did not think Marika would need a bone marrow transplant but Greg, eager to deploy again soon, wanted to have his blood tested to see if he was a match, just in case.

My children had guts. I felt like a wimp next to them. She was fighting for her life with fevers over a hundred-and-four. He was flirting with death in far off deserts filled with improvised explosive devices. And I got on the phone or emailed almost daily to ask if they’d eaten enough protein for breakfast. They were anchored in their real worlds and I was the dizzy planet that orbited light-years off in the vast space around them.

They’d rarely been in agreement until he shipped out to boot camp. He was always a warrior. Or, more precisely, he had learned to fight to hang onto his share of the attention when his sister was born. She would wave her tiny clenched fists in his face when he peered into his old crib to find the sweet playmate he’d been promised. Twenty-two months apart in age, when Marika was three Greg cut off a chunk of her hair and she walloped him. He destroyed her doll; she walloped him again. She adored him but he’d storm into her bedroom late at night, whooping a war cry, and she’d wallop him on the spot. And then Greg would barely contain a gloating grin as she got punished for walloping him. There was constant competition between them.

“One day you two are gonna be best friends,” I’d say and they’d look at me like I was wearing dirty diapers. For many years, Marika was the big strong one, but Greg was fearless. He fought me and his father, his friends and his sister, long before he grew to be six feet tall and was called to Iraq and Afghanistan. As a teenager itching to get out of small town Ithaca, he teased the local cops, tearing through the streets on his bike. When he got his license he tore through town in his father’s truck, or in a girlfriend’s mother’s sedan, ripping up lawns and shearing mailboxes. Through an early-entrance bonus program he entered the army during his last year in high school, and trained in paintball combat with the recruiters on weekends, until he could graduate. Desperate to get going on his career, he was a displaced soldier, a total misfit in the liberal college-town of Ithaca. Marika and I were proud of him, but we worried about the trouble he could get into when he was home, and fought nightmares of worst-case scenarios when he finally deployed.

What does it really mean to be a soldier, I wonder? Soldiering, like lifeguarding, involves a lot of standing guard and protecting. Soldiers fight fiercely for causes, often destroying lives in the process. A lifeguard’s main mission is to save lives. Lifeguards stick around in one area, ever watchful to avoid disaster, while soldiers are always saying goodbye and leaving, heading off towards the thick of danger.

Long ago I lived with another soldier, loved him, and so many times watched him go out into the uncertain world. My father. He had been in the army during World War Two and was climbing the ranks in the Civil Air Patrol as I grew up. I’d spend hours following him, observing his carefully coordinated movements. I’d run to the door with the barking dog to welcome him home each evening, and made it my job to be up at six every morning to see my first soldier off to work.

Early one morning the boiler exploded in the musty basement of our Long Island ranch house. My father gathered up his three daughters and our mother into a far bedroom, and then led the fire brigade up and down the stairs to the scene of the disaster where it was not yet clear if the emergency was over. Strong and courageous, he was the one I wanted to be like. So later, whenever it was my turn to face danger, even though I was terrified, I tried to do what I thought my father would do: get tough and let nothing get in my way.

Soldiers tread the shaky ground between life and death. It is not always prudent for soldiers to ponder too closely their proximity to death; it’s more feasible to press forward with the mission at hand. When my son was about to leave for his first deployment, he went to say goodbye to our beloved family friend Andrea, the Montessori School directress.

“Greg, are you prepared to die?” she asked. Maybe it was like a small grenade bursting in his head, giving him something to think about. That’s how it hit me later, as his mother, when I heard about the conversation and tried to imagine how anyone could ask this of a soldier going off to war. That’s Andrea. She’s another lifeguard, caring for young lives in her small corner of the world. But unlike me, she wasn’t afraid to question what she didn’t understand.
“Yes,” Greg had answered her. And later, in Iraq, he missed death by mere minutes, inches, and the luck of being put on the fire squad that entered the building next to the one that was rigged.

No one ever asked me if I was prepared for a child of mine to die. Or I might have joined the Smother Mothers tribe, and clung desperately to all my beautiful soldiers, slowly strangulating the life out of them myself.

 

 

Duetting: Memoir 19

Duetting: Memoir 19 Robin Botie of Ithaca, New York Photoshops a duet of her words and the writings of her daughter who died of cancer.

It was all distractions. Diversions. Detoured from our former daily missions, we’d do anything to pass time so we could just go home again, live our real lives, and be normal.

I discovered I liked being a caregiver. I also learned that my toughest challenges always seemed to involve the invisible. Like germs. Fungi, bacteria, and viruses surrounded us. My days revolved around avoiding them. Water bottles and food older than a day were thrown out. It was comforting to wash my hands in very hot water, humming the Happy Birthday song twice, the recommended amount of time to eliminate germs. And I loved “Purelling,” using hand sanitizer, forty times a day. But despite my phobic efforts, Marika was always being plagued by something I couldn’t see. Like abnormal blood counts. We waited every morning for the daily report. If the numbers were right, she could leave the room with a mask on, eat an apple, visit nurses on other units, maybe even go home. I couldn’t see it in her face or her demeanor. She could be feeling terrific but if the counts weren’t where they should be, we weren’t going anywhere.

And I, myself, was invisible. Afraid of being told to go, either by Marika or her doctors, I made myself small. I was the fairy facilitator, barely noticed until clean clothes, food, or a hand to squeeze during a shot was needed. Much of the time Marika pretended I was not there. But I knew that she knew I would always be there for her. The hard part was my invisibility when dealing with the rest of the world. Like her father. I’d report to him daily after the morning rounds, and immediately when there was trouble. But he’d call the nurses and doctors anyway, so I felt overlooked. Invisible. And Laurie. She emailed online newsletters to keep family and friends posted so they could support Marika.

“Laur, what about me? You report the news like you’re the one stuck here in the trenches getting all the information yourself. There’s never any mention of me or my efforts,” I cried, like a jealous four-year-old with a new baby in the family. The doctors stopped addressing me. The nurses, many only a few years older than Marika, were devoted to her and visited often. From my lonely corner by the recycling buckets and hazardous waste containers, I peeked at the company that came and went. “I’m her mother,” I wanted to scream. “She wouldn’t be here if it weren’t for me.” No, she wouldn’t be here if it weren’t for cancer, I corrected myself. And in my heart I was grateful for the attention Marika got. I might be small and insignificant, but not to her.
“Mom, can you get me some Pacifica Brazilian Mango perfume at Wegmans?” she pleaded, with a silly pout. Then I was practically skipping out the door.

July. August. There was so much hope. We charged up and down the hallways dragging the IV stand by its cord, taking turns pushing the wheelchair, both of us wearing masks to ward off germs. Wending our way around meal carts, we dared the despicable germs to try to catch us. Marika had already recovered from major episodes of seizures, pneumonia, septic shock, and respiratory failure. Twice she’d emerged smiling victoriously from complete life support in the ICU. She was a star, on life number three, and we couldn’t imagine that she wouldn’t always be able to produce a miracle. Stunned and proud, and tethered behind like a small dumb dinghy, I sailed, always in her wake.

The gall bladder surgery took three hours. I sat alone in the hallway chewing my cuticles until it was over. There were complications. She came through but would need more recovery time. This would set back the final chemo treatment and thereby create a major timing crisis. The chemo required two weeks of careful monitoring as her cell counts were put into crash mode. But freshman orientation was coming up fast.

“She can’t miss orientation,” Laurie pleaded over the phone, “That’s when students learn how to make college work for them and how to go about screwing it up. Lifetime friendships are formed during that first week. It’s critically important.” I remembered my own college orientation, the excitement of beginning the new adventure that was mine alone, not my family’s. That was what I wanted for my daughter. But I kept quiet and let her work with Laurie to devise a plan the doctors would accept.

Early on a crisp morning at the end of August I drove Marika from home to Clark University in Worcester, Massachusetts. I helped her unpack. Laurie joined us, elated that Marika was finally going to live close by. It was a magical day, sunny and warm, full of excited students and other apprehensive parents.

“Do you believe we made it?” I said, over and over, drunk with happiness as we inspected the dorm, its bathrooms and community spaces. Laurie and I followed Marika to the registrar, the computer center, the dining hall, and finally the health center where we made sure they were well aware of what Laurie affectionately termed “the little time bomb” they now had in their midst.

I cried all the way back to Ithaca. Our scrimmage with cancer was over. It had ended well. Marika would get her college orientation and the first week of classes, I reminded myself. She would stay with Laurie in a hotel between the school and the medical center during the riskiest days. And in two weeks she’d return home, briefly, for her third round of chemo at Strong. I would go with her to Rochester until her counts allowed her to recoup at home. And then she’d be off to the university again. It was a good plan; everyone was satisfied.

So she’d been launched. Her new life was beginning. Marika belonged to Massachusetts and Clark University now, six hours from home. She belonged to Laurie. She belonged to the Greater World at last.

Mission accomplished.

There was plenty to worry about.

 

 

Duetting: Memoir 18

Robin Botie of Ithaca, New York uses Photoshop to illustrate the journey with her daughter through the wilds of cancer.Depression affects the immune system. To survive bad luck, boredom, painful procedures, endless blood transfusions, and long hospital confinements when it seemed everyone else was out dancing, I conjured up all sorts of distractions for my daughter. Part of my mission was to make something magical happen each day. So I pretended the hospital was our summer resort. The lobby was an esplanade, perfect for people-watching, with the prevailing aroma of roasted coffee, and a player-less piano trilling away. The information desk was our concierge, offering restaurant menus for takeout dinners. Complimentary prune juice cocktails and ice cream cups were always available from the unit kitchen, a few doors down from our somewhat-less-than elegantly appointed room.

“If you could makeover this room, what color would you paint it?” I asked, wanting to draw Marika into my fantasy. She rolled her eyes at another of my stupid questions.
“Orange,” she grunted.
“What about the floor? Orange too?”
“Carpet.” Then she added, “And I’d make this a double bed with a real mattress.”
“I’d put a fridge in over there,” I said, grateful to get her engaged.
“Yeah, and a bar. I could use a martini.” Speechless, I looked at my just-turned eighteen-year-old daughter and wondered how many martinis she’d had.

When allowed off the unit, we escaped to the meditation room with its cool blue-green lights and crocheted blankets that hugged two stuffed chairs. I wheeled her to an indoor courtyard near the far-off dentistry wing. We roamed the endless hallways, searching for the chapel in the depths of the massive Strong. We tiptoed to the newborn babies’ window and peeked through the slats of drawn blinds to watch the tiny wrapped bundles wriggling or peacefully still.
“You were the most beautiful baby, Mareek.”
“I know,” she said, engrossed in the newborns.

“Where are they?” She growled impatiently. We were stranded in the radiation department, waiting for the transport team to take us back to the room.
“Okay, it’s been over ten minutes. I’m kidnapping you. Hold onto your hat,” I said, whirling her wheelchair around.
“Mom! Whoa, what are you doing?” she sputtered as we zigzagged wildly down the hall. “Do you know where you’re going?”
“No, but I bet I can get us back by lunchtime,” I said, surprising myself by my desperation to stave off negativity and the ensuing insults to Marika’s meager immune system. On the way to the room, we meandered through the fourth floor pediatric hall where the walls were painted in bold colors and plastered with distorting mirrors and protruding animal sculptures that begged to be interacted with. Then we were at the door to the Ronald MacDonald rooftop playground. It was deserted so we sat outside in the middle of the chain-link fenced-in yard, four floors up. From my backpack, I removed two tiny containers I’d carried around for days for just this opportunity. We blew filmy, fragile bubbles that flew off into the wind.

“Should I fetch cooked sushi for dinner tonight?” I asked in between bubbles.
“I want steak,” she said, adding “for lunch.”
“Well, if I get lunch take-outs we’ll have to eat hospital food for dinner,” I reminded her. That was our deal: eat hospital food for breakfast and lunch, eat well for dinner. “But,” I offered, “I might be talked into sharing a frozen latte from the lobby after a hospital lunch.” She scrunched up her face and declared,
“Double iced mocha with chocolate ice cream. I want my own.”
“Deal. Do you think we’re locked out?” I asked, nodding toward the door that had closed behind us when we went outside, a last-ditch effort to throw in some further intrigue.

Friends were the best diversion. They occasionally made the two-hour trip from Ithaca to Rochester. Cassie, Carla, Shoshana, Golda, Jeff, Julie, Lamarr, Rachel, and more. Cassie brought an enormous stuffed dog. Carla brought Silviana. Julie always climbed into bed with Marika. There was lots of pizza and Chinese food. And laughter. I left the room most of the time when her friends came. But not before I scanned them for signs of pinkeye or colds.

As it got closer to college orientation, the visits died down. Except for Rachel.
“How’s she doin’?” Rachel asked from Ithaca, ninety miles away.
“Well, it’s funny you should pick this moment to call. She’s in radiation right now. She had a high fever last night and we’re waiting to see…”
“Well tell her to cool down,” she said, “and tell her I miss her.” They called each other “Wifey.” Rachel, a year older, had recently passed her Emergency Medical Technician training. When not in college, she worked for a local ambulance company. I felt totally comfortable sharing the details of Marika’s condition with her. Especially since she always found us, whenever Marika’s health crashed, wherever we landed.

Several times a day, I rubbed Marika’s feet. She didn’t like asking.
“Mom.” She would shamelessly wave a foot in my face and frown pathetically. Foot rub.
“How do you do that with your mouth?” I asked, trying to mimic her pout. “It has to be a short one. I have to write a paper for my class.”
“Why don’t you pull the cancer card?” she yawned.
“What cancer card? What’s a cancer card?” I asked. She smiled with closed eyes, and wiggled her toes in anticipation of the foot-rub.    
“Just tell your teacher your daughter has cancer, Mom. Then you won’t have to work so hard.”

Marika never had to do much to get me to rub her feet; it was the only time now, other than grasping hands when she got shots, I could touch her. So I rubbed her feet when I was nervous, when she was tired, after breakfast, before bedtime. It was a dance of my hands over her soles, a meditative prayer tracing around her ankle bracelet, holding her heels, pulling gently on each of her painted toes. My thumbs lightly pressed butterfly-indentations over the balls of her feet. And finally, I’d slip-slide my palms along the curves of her arches, massaging those sweet feet over and over as though I could knead the cancer out. On hearing bad news, I’d grab her feet. It was my way of hugging her.