Tag Archives: daughter with cancer

Duetting: Memoir 43

Duetting: Memoir 43 Robin Botie of Ithaca, New York photoshops an old picture of her daughter who died of leukemia as she sang her last concert.

“We have a donor for you,” the Roc Docs announced at our meeting, like they were giving Marika a birthday gift. “He is twenty-nine years old.” Age and gender was all the information the transplant team could share about our donor.
“The transplant preparations take two weeks, and the donor is available in mid-November.” Because of her history of extreme reactions to treatments, Marika would have to stay in the hospital during the rigorous preparations. “So you’ll be admitted at the end of next week,” they said. Startled by the short notice, I must have gulped. Suddenly seven sets of eyes turned to me. Then a small voice popped up, not my own.

“I can’t,” Marika said, and the focus honed in on her. “My concert. I have to do my concert.” There was a stunned silence in the small, overstuffed room.
“Your concert? But—um, when is your concert?” one of the team finally asked.
“It’s either the 26th or 27th of November. We’re still working out the details.”
“Uh, we can see if the donor can wait,” one of the team suggested uncertainly. Leftover smiles were frozen on the faces of the doctor, the social workers, and the nurses. They eyed each other in disbelief. Then they looked at me like I should do something. I heard myself swallow. No one said to us, “We’re worried about losing our small window of opportunity” or “We might lose our donor.” If this was a bad idea, it wasn’t being made clear. They simply nodded and said they would ask the donor if he could be available at another time. So everything was put on hold. My stomach was grinding bricks.

“Are you out of your mind?” Bewildered when I told her, Laurie yelled at me over the landline back home. “Remission doesn’t wait around for you to check everything off your to-do list.” She said nothing to Marika, didn’t yell at her. But a day later, she called back to ask me, “So, what’s the new game plan?”
“The concert is on Friday, November 26th. We get admitted on Monday the 29th, and the transplant is on Monday, December 6th. Wanna come out for Thanksgiving?”
“No, but I wouldn’t miss that concert for the world,” she promised.

Thanksgiving in Ithaca is a chaotic coming and going of thousands. Evacuating students, mostly. But also friends and neighbors. The people you count on to participate in putting on a concert, or to show up. All the movement over the course of a few days makes planning an event during this time period an exercise in patience, creativity, and faith. Marika and Russ scrambled about to get a back-up singer and other musicians from people who had not yet heard their music. By the day after Thanksgiving, the night of the concert, The Nines in Collegetown was packed. I knew almost everyone there, and their mothers. Saving a seat for Laurie, I nursed a beer at a table with friends as we ate pizzas and tried to hear ourselves talk over the clamor of The Nines, known for its crowds, Blue Monday jams, and deep-dish pizzas. Our excitement and anticipation were at a peak when simultaneously, the band appeared and Laurie arrived. My eyes immediately zoned into an examination of Marika. Cute dress. When did she get that? She’s wearing the boots I gave her. She looks happy. She looks tired, like she just woke up.

Pleased with the crowd, Marika started singing “Party Jam,” a short song she and Russ wrote. Her large earrings dangled wildly as she moved to the music. In the back, Russ beat away at his drums. I was mesmerized watching my daughter doing what she dreamed about. I ordered another beer.
“Hello everyone. Welcome to the Nines,” Marika said cheerily, and went right into “Soldier,” a song she had written for her brother who was there in the crowd, recently honorably discharged from the army. She grimaced at her back-up singer who, unfamiliar with the tune, sang off key. The singer wore an old ridged washboard tied around her neck, which she struck with two drumsticks. I glanced across the room at her mother who smiled proudly at her healthy, spirited daughter.

“Don’t forget to tip those bartenders,” Marika ordered at the end of the song. “I wanna see more of you dancin’,” she yelled. The crowd cheered. The music got louder, and she danced. Then we all danced. We bumped into each other and laughed, waving our arms. It didn’t matter that we could hardly hear the songs over the percussion. This was what we’d waited for, what our lives had been put on hold for. The crowd at the Nines was crazy. The music boomed and Marika was in command. I wanted to freeze-frame the moment. She sang “Never After” and trailed off, “I am not going anywhere, I am not going anywhere, I am not going anywhere.”

Finally, with a victorious smile, finger pointing and fist punching the air, Marika shouted a song by Cake, “I want a girl with a short skirt and a lo-o-ong jacket.” A raucous finale. Just in case anyone was thinking this concert was to be her swan song. Sometimes I wonder if Marika knew it would be her last performance.

It was ending. Please don’t let it end, don’t let it be over yet, I pleaded in my head, sending a grateful prayer to whatever kind spirit might be watching my world. Cheers to Russ and all the musicians, to all the servers at The Nines, to everyone in the crowd. I shot blessings to the doctors who waited and the donor who waited.

Laurie and I walked back to the car, our Frye boots scuffing the sidewalks of late-night Collegetown. My ears still rang. In the dark streets, the dazzling streetlights were kaleidoscoped by my tears.

 

 

 

 

 

 

 

 

 

 

Duetting: Memoir 40

Duetting: Memoir 40 Robin Botie of Ithaca, New York, photoshops a scene of hugging her luggage for dear life in airport security screenings.

Traveling from Ithaca, New York, is never easy. And to travel from Ithaca to Australia can take over thirty hours if all goes well and none of the three flights is delayed or cancelled. During those thirty hours I will be offered only two small meals and a snack. During those thirty hours, unless I check my luggage or make a fast friend, I will be anchored to my bags. It feels like they’re filled with bricks. Precious gold bricks, considering the irreplaceable contents. I mean, there was no way I was going to ‘check’ my daughter’s ashes so she could ride in the cargo pit of the plane. Nor her stuffed puppy. Nor her baseball cap, nor her polar tech fleece jacket that had already gone to Australia and back with Marika two years earlier. No, I stuffed the box of ashes and everything else into my carry-ons. And now I’ll have to have to squeeze myself, with my backpack and rolling bag, into tiny airport restroom cubicles all the way to Australia. And during those thirty hours, I will fly far enough away from Ithaca on the first day of spring that my whole concept of the year and seasons will be totally rattled upon arrival in Australia on the third day of autumn.

In the Ithaca Airport waiting area I look around at my fellow travelers who are mostly engaged in tablets or smartphones that light up travel-worn faces. No one else is hugging their luggage for dear life or seems close to tears. My first flight is cancelled due to thick fog in Newark. So I am stuck in the Ithaca Airport, talking to Marika’s ashes for almost four hours. And when the new flight is delayed, there is a complete revision of the plan I’d worked on for months. It is still unclear if the newest flight will ever take off.

I hold the bulging backpack on my lap, wrapping my arms around the bulk of it the way I held my belly in the last weeks of my last pregnancy. Back then, if I was safe, Marika was safe, and being good to myself meant being good to her. Worries of cancer then were even more foreign and far away than Australia.

Marika’s first airplane ride was when she was three months old, and weighed nineteen pounds. My father had given me three hundred dollars to “go buy Gregory a toy for his birthday.” Instead, I bought airplane tickets to visit my Dad for a weekend. It was the first time I was traveling by myself with two children. Marika, who weighed only four pounds less than her just-turned-two-year-old brother, was always attached to me then. So she was along for the ride. That was decades ago. Over time we had all become veteran travelers.

Marika-in-the-box and I finally take off from Ithaca.

Traveling is not easy these post-9/11 days, but traveling with ashes is just asking for trouble. The security guard in Newark regards the sealed black box with a frown and furrowed brows. He scans my face. I hold my breath and don’t know where to look, back into his eyes or at Marika’s box. He nods in the opposite direction, “Step over there, please.”

Immediately I take out the documentation: the previously requested confirmation from the Australian Consulate, raised-seal death certificate, crematorium papers, and letter from the funeral home. Some terrorist somewhere must have tried the old box-of-ashes trick because every airport over the course of our trip has a special procedure for handling sealed boxes. Sometimes there is a particular broiler-like rack for ash boxes to get x-rayed on. Agents also run tiny laser-like flashlights over every inch. And then there are tests where they don rubber gloves and rub the box with a colorless liquid on paper that turns blue. Or doesn’t. In the Los Angeles Airport, my heart pounds and I momentarily abandon my shoes at the end of the x-ray screener when Marika and I are separated into different sections as they sonogram her box from every side. I recall a family vacation years back, just months after 9/11, when a last-minute random sampling search had targeted eleven-year-old Marika, separating her from me and her brother who had already charged ahead to board the plane. Torn between the two, I had run after her.

“It’s okay, Mareek,” I tell her ashes after the sonogram. Traveling with ashes, I have someone to talk to who shouldn’t be interfering with the plans. But she does.
“Mom, I’m starving. Pleeease. You promised,” I hear her every time we pass a Starbucks kiosk or airport sushi bar.
“Her remains,” they’d informed me at Bang’s Funeral Home, when I went to pick up the letter affirming that the box was indeed filled with ashes, “are the last physical leftovers, the flakes and chunks and chips of her bones.” Even reduced to crumbs, she’s still bossing me around. And as chunks and chips, she is heavy.

After three flights and what feels like a year later, Marika and I arrive at Sydney International Airport. Getting off the plane, I sense her excitement, especially when the security dog from Sydney Customs comes by, wagging its tail. I was sure, after all the fuss at each airport’s security station, our arrival at customs in Sydney would be the killer. But the security dog does not stop at our carry-on, now laid by my toes along the yellow line on the floor with everyone else’s belongings. The dog goes straight for the punky fat guy with the earring. It trots right by us to his stuff, which really appeals to that dog. And I swear I can feel Marika’s ashes jump for joy as it passes, “Here pup! Awwww, come ‘ere pup.” The dog ignores my precious bundle on the floor. So Sydney is the first airport out of four where my box of Marika is not subjected to swabbings, dustings, x-rays, or severe scrutiny. It took a fraction of a second to pass that canine sniff test, and now Sydney is ours without a single question. And dog-tired as I am, I quickly replicate, in the hotel room, the tiny altar I’d set up at home with her box, photos, stuffed Puppy, and chocolates. Through the hotel window, the early evening light on the harbor calls to me. Any mother and daughter would need to take a break after traveling non-stop together for almost two days. So I scurry out of the room, and right away begin my exploration of Sydney.

 

Duetting: Memoir 39

Duetting: Memoir 39 Robin Botie of Ithaca, New York, photoshops a poem written by her daughter who died of leukemia onto her photograph of a sea of clouds.

My story bounces around a lot. Back and forth between times. That’s because I, myself, am always straddling time, living with one foot firmly planted in the past and the other limping in the here-and-now. Time is so squirrely. It’s always getting waylaid by something catastrophic or miraculous, or just plain draining.

What am I doing? I ask myself when almost everything I do is for Marika. In the spring of 2012, I’m going to Australia to carry out her last wishes. The trip is an extravagance I would never have allowed myself. But someone was going to have to go someday, unless we would have brazenly mailed her ashes off to that Australian she loved, who never answered my emails, and let him dispose of her ashes, easy and cheap. No. In April 2012, I am still standing guard over her. Her ashes. This is part of our journey together. And for me, a journey is never simply a distance covered in time or space. It’s an opportunity to change something. It can be open-ended, intuitive, or steeped in purpose, but a journey is dependent on attitude more than intentions. Where will I allow myself to go? Can I stay open to whatever comes my way? And if something goes wrong, if “broken tides collide” like Marika wrote, will I be able to smile—one day, if not immediately—and accept that it was simply what happened? Just part of where that journey would intercept another path?

Australia was Marika’s dream for another shot at life, a life without cancer. And when my journey is over I, too, will start a new life. My life without her.

I have to keep reminding myself I will not find Marika in Australia. Not a trace of her. She was there only two weeks. When she left home, I gave her tickets and a Triple-A Travelcard loaded with three hundred dollars. I told her not to spend money on anything for me. I just wanted to know about different foods she would find. And she gave me, on her return, cookies and a postcard with a cheeky four-year-old in a superhero costume on the front. It was a government-issued advertisement for product safety she’d gotten for free.

“Mom,” she had written on the back of the card, “Always Marika, Top 5 foods from Australia to try: 1. Vegimite!! – Very salty 2. TimTams – Especially dark 3. Rosy Apple Bits – ask me for some 4. Australian style bacon – probably can’t find in US 5. Lamington slice – I couldn’t find. I need to try too!” Right there was an unfinished mission, I noted.

Then there’s her scrapbook with clippings, postcards, and brochures. And photos. Photos Laurie and I googled to match the backgrounds with images of particular places. So I could have an idea of where Marika’s feet had taken her, “which way my feet are going,” like Marika said.

She had flown to Australia alone to meet up with her lifelong friend from Ithaca, Carla, who was at school in Sydney for the year. Marika had other friends there as well. I will have no one. She’d asked for extra money to rent a car and I’d said no. So I will not allow myself to have a car there either. I will not open the box to spread her ashes until after Sydney, after one last flight five days later to Melbourne. I’ll take four full days in Sydney to calm my apprehensions, fuel my courage. I’d planned as much as I could before the trip so I wouldn’t end up immobilized by fear in hotel rooms for the whole two week trip. Yes, I’m terrified. That is why, on my last night home, I emailed twenty-two women, my Australia-Alone Support Squad:    

If you’re getting this email it is because I regard you as someone who has been strong and supportive, and I need your help now. I am on my way to Australia with Marika’s ashes. But I am not alone. I have her stuffed Puppy, my iPad, and you. It is scary but I can do this …

To Marika I wrote, in response to her poem: Marika, I am not “Flying to You.” There will be no one and nothing to greet me. I will arrive alone, tired and hungry, and scared because I will have to fend for myself as soon as the plane lands. I will not be rewarded with your smile or anyone’s open arms. Oh, to be flying to someone I love. And now, over this past year of grieving, I have found all your words, all over the house. There won’t be any more poems left to find when I get home. But while I was packing, I came across a framed drawing of a rabbit you’d made that said “Welcome Home Mom.” I put it on the mantle outside my bedroom, to be the first thing that greets me when I return from Australia.

Let the royal rumpus begin, I always say upon starting an adventure. Buckle up. We’re gonna bounce around a lot.

Duetting: Memoir 38

Duetting: Memoir 38 Robin Botie of Ithaca, New York, photoshops her daughter's poem onto a scene of driving the highway at night.

I’m an expert on fear. Long ago I defined two categories, based on how hard it hit: the immediate mind-gripping terror where one may respond quickly and with focus; and the kind of fear that festers deep inside, an ache that slowly gnaws away at one’s heart and gut. Fear is what fuels most of my functioning. It’s also what immobilizes me. I’ve learned to mostly tame it by looking ahead, asking, “What’s next?”

At the end of July 2012 on Long Island, after moving from my cousin’s place to the Ronald MacDonald House, and spending weeks wandering the halls at the North Shore Medical Center, my daughter and I were permitted to go home. We would need to make weekly trips back to Long Island. Even so, the prospect of having several days a week in Ithaca for whatever summer was left, cheered us. But shortly after arriving home, Marika developed chills and fever. We dashed to our local hospital where she was pumped with antibiotics, and then we were sent back to Long Island. Marika’s leukemic white blood cell count had climbed high off the charts. Afraid of a repeat of the syndrome that put her into respiratory failure and nearly killed her the first summer of cancer, the new Long Island team gave her a dose of a Phase Three experimental drug that was only made available to patients who had no choices left. Mylotarg was called a “magic bullet.” Unlike chemo drugs that kill or damage everything, the Bullet targeted only leukemia cells for destruction, and left the liver, kidneys, and other organs intact.

The Bullet worked for Marika in just one dose. But the trouble with the Bullet was its frequent side effect, horribly high fever. Fever that surged after a day of hibernation. Fever that was impossible to tell if it was from the Bullet or from some hidden, lurking infection. Getting close to summer’s end, Marika desperately wanted to be home where most of her friends were preparing to leave for their colleges. We both yearned to go home. Fever was the only thing holding us back.

When she was free from fever for two days, we left Long Island. It was a Friday afternoon, when everyone else was fleeing for the weekend. We slowly inched our way out as the Brit in the new GPS dragged us through the scenic route of New York City. We were stuck for hours in traffic. In the heat. Sitting in the passenger seat, excited to be going home, Marika was talking to me once again. She was pink. Maybe too pink in the air-conditioned car. Between us a brown paper bag held her meds and a thermometer. Finally out of traffic, we approached the more remote parts of Pennsylvania, and stopped for dinner.

“I’ve got a fever again,” Marika announced, removing the thermometer that chirped the now familiar alarm of four sets of three high beeps. She took a dose of Tylenol, and we downed hamburgers and cold drinks at MacDonalds, ordering extra drinks for the road. She took her temperature again, and drank another icy diet coke as I started up the car.
“Mom, it’s up. It’s a hundred-two point nine now.”
“We’re in the middle of nowhere,” I said. The single server at MacDonalds had been unable to help locate a hospital, so we got back on the road to Scranton. Marika checked her temp every ten minutes and toyed with the GPS as I drove. One hundred-three, she whimpered. I think I began to pray then.

“Mom, a hundred-three point four.”
“Are you okay?” I fixed my eyes on the road and heard my own voice getting higher.
“I’m okay,” she said.
“There’s a blue hospital sign. The blue H,” I pointed out. We drove on and on and there was no other sign. It was dusk and it was getting hard to see. I almost ran a stop sign looking for anything that resembled a hospital. Please help us. Someone. Where’s the darn hospital?
“A hundred-four, Mom.”
“Okay, another blue H, I think this is it, can you read that sign?” A one-way street and hidden entrance to a full parking lot, “This doesn’t look like a hospital. Is it? Yeah. I’m gonna drop you off at the emergency entrance.”
“No! I can wait. I’m okay,” she implored.
“Mareek–I have to park in the garage, way down the road.”
“I’m not getting out,” she hollered. So I parked illegally, as close as I dared, and together we headed into the emergency room.

“This is a cancer patient on two trial drugs with a hundred-four fever,” I screamed to the woman who seemed too calm behind the glass window at the emergency check-in. Marika was looking very gray now that she was on her feet. Someone shoved her into a wheelchair and took off with her, and I ran to keep up as they wheeled down endless halls and around corners of the strange single-story building that was unlike any of the hospitals we’d frequented the past two years. What kind of hospital was this? Now that we were back in a hospital, a part of me believed we were safe, or that her safety was out of my hands. So then the second type of fear, the gnawing, festering fear-ache, took over. It had sat heavily in the back of my mind ever since I’d been given the papers, in triplicate, labeled ‘Healthcare Proxy.’

Marika had first asked Rachel, and Rachel, knowing what it was, had turned her down. I was Marika’s second choice. Though I did not fully understand what the document meant, it meant everything to me to have been chosen over her father. I had never really considered the day I’d actually have to represent Marika or guess her wishes. But now we were in a strange hospital somewhere outside of Scranton, and Marika was burning up. I unfolded and refolded the piece of paper that lived in the bottom of my tiny purse. Was this going to be the night? Would I have to make life and death decisions for her? Tonight?

At two in the morning, when the fever had died somewhat, after tons of tests and our promise to go straight to our local Cayuga Medical Center, we were released.

Driving in the dim hours before dawn, I was wide-awake. Something had changed around us. My heart was no longer pounding but I was acutely aware of my daughter as a time-ticking catastrophe. Out the windshield, the sky was a vast ocean over the black hills scooting by. Stars shone above the deserted highway that wound toward home. The world was frighteningly beautiful. Quiet. Peaceful. And in the car, on that almost-last night in August, riding side by side the final two hours to home, Marika and I shared brief bits of conversation, too drained to keep up our usual guarded disconnection.

“I’m gonna take a road trip next summer, with a girl I met in Australia,” she said. “We’re gonna start out in Boston and visit Laurie and my friends at Clark.”
“Neat,” I said. “You think you’ll wanna try to do camp again?”
“This is before camp starts,” she said, “Yeah.”
“Well, this summer’s done.” My eyes widened, taking in the shadowy landscape as I drove. We were planning, considering, “What’s next?” and didn’t know—we had no clue—this would be Marika’s last summer. I said, “Next year we’re gonna have a real summer. No hospitals or cancer centers.”

Duetting: Memoir 34

Duetting: Memoir 34 Robin Botie of ithaca, New York, photoshops a party scene to illustrate her daughter's first apartment, and adds her daughter's poem about partying.

When I think of all the times I could have said No to my daughter, I am so grateful that someone reminded me to “pick my battles,” and that my intuition or just plain love got in the way of my saying No. And luckily, Marika’s will was stronger than mine.

She was moving out of the house. I was gnawing at my nails. Visions of dirt, lethal germs, and total abandonment of discipline clouded my appreciation of her excitement. But I knew how much she craved independence. Every single chance to be on her own had been foiled by leukemia. So now that she’d finally found a way to afford leaving home, I had to embrace her dream. The day after we learned there would be no transplant Marika began the move to her friend Julie’s apartment with her new dog and new hope.

She moved in slowly. Cautiously. First she moved her belongings. For weeks she hung out and partied at the apartment but did not stay overnight. Then, when she started to sleep there, she came back to the house for showers and meals. And she always returned home to do laundry. Whenever she arrived at the house, I stopped whatever I was doing. Something in me soared each time she showed up.

The apartment was a typical tumbledown Collegetown rental. As soon as I entered, I remembered my own best times in my first home away from my family. The sink and counters were filled with dirty dishes. Mountains of beer bottles and pizza boxes took up most of the kitchen floor. Doors were always open, heat on high, and lights left on no matter what the season or time of day. Dust. Mold. Mysterious odors and dark, dank narrow halls. A rust-stained bathroom sink with a constant drip and a shower that dared you to try to find a clean inch to put down your bare feet. A huge stained couch built to accommodate masses monopolized the living room. The place was begging for a party. Marika moved in and lit it up like Christmas. Plastic palm trees, blinking lights, posters. A psychedelic bedspread, magenta pillows and rugs. We shopped at Target for utensils and dishes to go with the lively décor. My housewarming gift.

The apartment had a high turnover and an ever-expanding cast of characters. One day two guys she’d never met moved in. Friends of friends would come and go, sometimes camping out on the couches, sometimes coupling, playing music, always coming back and partying. Rachel, escaping the stresses of relationships and school, hung at the apartment whenever she was home on breaks. When I visited, my eyes would focus past the people to the piles of beer bottles. Does Marika drink? Didn’t the doctors say, “no alcohol”?

I never knew who I’d run into. If I looked strange or out of place there, no one seemed to notice or care. Everyone and everything was in transition, on hold, waiting to see what was next. Hence, they called the place “Limbo.” And somehow community developed, which was just what Marika craved. I had to be happy for her. And she was a lot easier to live with now that we had separate homes. Was this what it’s like to have a grown adult daughter?

When Marika finally completed her move to Limbo, her puppy Suki became a regular resident too. Coming and going as much as anyone else, Suki was in and out of Facebook photo pages, another partygoer. If Suki could write a book it would be filled with parties, road trips, leftover pizza crusts, carloads of friends, couch-loads of friends, and her quiet adventures with me. Suki became my Sunday morning hiking partner when I discovered that Sunday morning didn’t exist for Marika and her apartment mates. Sunday mornings at Limbo were like the day after Doomsday. Bodies lay all over amidst decaying remains of Chinese take-outs. No signs of life anywhere. It soon became our regular arrangement, my rescuing Suki on Saturday afternoons before the festivities began.

“Mom, did you have dinner yet?” she would call just after I’d eaten. “Can you take Suki for the night? Do you have an extra set of measuring cups?”
“Sure, I’m in Wegmans. Do you need any— ”
“Sushi?”
“Okay, I’ll be right over.”

Her apartment was just a fifteen-minute drive from the house. I stopped by regularly to bring dinner or pick her up for our trips to Rochester. In the middle of the night I drove the empty streets across town to bring her home when she phoned she was sick. I kept my clothes out, ready for those calls at two in the morning. It was good to still be needed. There was always frozen fruit for smoothies, extra eggs, and bacon in my house for the mornings she woke up hungry at home. That was our deal: call when you need me. I never had to wait long.