Tag Archives: cancer mom

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 35

Duetting: Memoir 35 Robin Botie of Ithaca, New York, photoshops an old photo of her daughter, Marika Warden, singing at her concert, making beautiful trouble.

My daughter was living like she had only an hour left. Like the lights could go out at any moment. By the beginning of 2010, Marika was back on a chemo maintenance regimen, taking ATRA on alternate weeks, mornings and nights. The weeks on ATRA were riddled with headaches and nausea. She would come home from her apartment and stumble from bed to bathroom and back to bed again. But the weeks she was off she made music, went on road trips, and partied to make up for lost time. Laurie and I muttered that Marika was in denial, that she thought she was immortal. But since trouble was what she was given, she made trouble dance. She made it sing. She made it beautiful.

The day the doctors said Marika could go to Australia, it was like I was thrown into a storm cloud. Trapped in the midst of mighty updrafts, downdrafts, rising temperatures and intense atmospheric instability. Any decent lifeguard would have already cleared the waters and taken control by the time the magnificent but unpredictable cumulonimbus clouds gusted overhead. But I was stymied. The Australia idea was immovable. Like cancer. Once the seeds were planted in Marika’s head and she was okayed by the Roc Docs, there was nothing I could do about it. And since they said she could have two weeks in Australia, it seemed that life—hers, mine, ours—must be somewhat stable. Suddenly I had everyone’s blessings to take a respite from caregiving. So when friends invited me to hike for two weeks in Turkey, I went.  

Marika watched the house, and the cat and the dog, while I wandered in Turkey and stopped at every marketplace to buy earrings for her. At the sacred House of the Virgin Mary in Ephesus, I hung notes with Marika’s name on the prayer walls. At every mosque I whispered good wishes for her. My bags were loaded with gifts, mostly for Marika.

When I came home the house was just as I’d left it. There’d been no parties, no broken or lost furniture. And just as I got back, in mid May, Marika went to Australia for two weeks. For almost a month we were on opposite sides of the earth.

While she was away I kept busy rewriting my resume and applying for teaching jobs. I tried not to worry. I told myself she was seeing the same full moon I watched by the pond. Its reflection, a bright silver light, danced, waxing and waning nightly in the water.

Marika called me once from Australia. We talked briefly. She was having the time of her life without me.

But the best times fly. She returned home, to her apartment. I gave her back the dog. She gave me a postcard and chocolate TimTam cookies. She was in a hurry to see her friends, so we didn’t talk much about our trips. I retreated to memories of my time in Turkey, where songs of prayer were broadcast in the skies over cities and towns. Where I’d climbed a hill overlooking Istanbul, and watched the city wake up to welcome each new morning. The air was filled with echoes of voices that flew from every direction. They chanted and prayed for the good in this world, for the best the day had to offer. For the best times.