Author Archives: Robin Botie

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.”

REPLY TO ROBIN

Duetting: Memoir 37

Duetting: Memoir 37 Robin Botie of Ithaca, New York, photoshops a sea of highways to illustrate her fear of waves, fear of cancer, and fears of getting lost.

Long Island, New York. I knew nothing about how to navigate my way around the place of my birth. Yet every cell in my body was acutely aware I was back home. My original home. Where Marika was immediately accepted into the drug trial program at North Shore Medical Center. Insurance was going to pay for it so we were going to be stuck on Long Island for most of the summer. I followed the GPS instructions to my cousin Norm’s apartment in Woodbury, twenty minutes away. Norm was graciously giving us his guest room and the living room couch for our first weeks in treatment. We unloaded Marika’s belongings into the guest room before she took off with Rachel. I got the couch.

The girls spent as much time together as they could between Marika’s appointments and Rachel’s classes. Some days Rachel took Marika to Jones Beach, my old hangout. They wore eye make-up and dressed in little bikinis. Marika’s tiny cutoffs sat well below her navel ring. Joined by friends, they wave-surfed and picnicked with wine coolers, beer, and watermelon. They stayed up late, stargazing in Hofstra’s intramural fields where Marika sang long into the night with strangers who brought guitars. They laughed, made up lyrics, and ducked in the gully to avoid the patrolling public safety enforcers. Marika went with Rachel’s friends to a concert in Brooklyn where the tickets were sold out so they climbed over a fence to watch for free. They rollicked all over Long Island while I lay low, reading in Norm’s apartment where it was cool and quiet. Except for a noisy air conditioner. Which I kept off as much as I could stand, not wanting to hike up Norm’s electric bill. When temperatures fell below eighty, I ventured out to hike along Jericho Turnpike. It was harrowing to walk alongside moving vehicles, but I felt oddly alive being whipped by the hot blasts of their passing. I couldn’t simply sit inside all the time. Sometimes I just needed to be out under the sky, to have room to stretch.

The GPS was set to find the medical center, west of Norm’s. It was set to find Rachel at Hofstra, somewhere east. “Have GPS will travel” was my motto. When Marika went out with Rachel, I sometimes took off to find Turkish restaurants, shopping sites, and parks to walk around. Anywhere I could get an address to plug into my GPS. But on one hot afternoon, driving Marika to Rachel’s, we noticed the GPS was dying. First, the feisty female voice quit. Lindsay Lohan with barely restrained attitude stopped ordering me around, stopped badgering me, sneering, “Ree-lo-cating,” like she had to work hard not to add, “dumb bitch, you missed this turn for the fifth time.” If she had eyes, she’d have rolled them like Marika. She ditched me.

Then the map disappeared. By the time I dropped Marika off, the text of instructions had gone entirely as well. I felt abandoned. Terrified, I tried to retrace my way back to Norm’s, but I was lost. I drove on, searching desperately for something familiar. I was in a sea of highways. Wide bands of roads crammed with cars crisscrossed, curled, and tangled over and under in churning waves. Directionless, I wiped my sweaty forehead, and continued with the flow of traffic until an exit advertised a shopping mall. I turned anxiously from the highway, my first intentional move on Long Island without the guidance of a global positioning system, and found the mall’s Best Buy. A half hour later, with the new Garmin Nuvi GPS set to a charming British male voice, I was back on the road again.

Almost every town I passed on Long Island had a memory tucked away: an old boyfriend who lived in Wantagh, a factory my father once owned in Westbury, the parking lot at Roosevelt Field where our family dog died when a friend left it in a hot car. Most haunting about being back though, was the ocean. It was in the air all around me, always just beyond the crowded highways and stretches of shopping centers. It was in my blood. To be on Long Island in the summer was to feel the Atlantic Ocean and the Long Island Sound pulsing in every part of me.

Living in Ithaca, I missed the ocean. So we’d take vacations to beaches, with boogey boards and picnics. My children were fearless in the water, maybe because I’d swung them around in Cayuga Lake and in pools and ponds from early on. But I was always terrified of waves. If I went into the sea, I stood stiffly in the waves, jumping up as high as I could at each swell, keeping the kids close, ready to grab before they could be pulled under. Because as a young girl, one summer on Jones Beach, I was swept away by a wave. Not very far. But I remember being petrified, helpless under the water. The sea was way stronger than I. It was vast and violent below its surface. And it wanted to swallow me. Crying, I finally pulled myself up out of the shallow remains of the wave and looked about. I could not find my mother whose hand I’d been holding only a moment before. Salt water stung my nose and throat. All around, concerned strangers reached out to help me. But I was not supposed to talk to strangers. I was frantic. Lost. Battered by the ocean I’d loved. And where was my mother?

That trauma haunted my dreams. It gave me a tremendous respect for water. It made becoming a lifeguard the hardest thing I ever tried. And it fired a small current in me every time I watched my children in the waves. In no way could I stand the thought of Marika or her brother being lost or scared like that. In pain. In any sort of trouble, with no mother to protect them. Back on Long Island during the summer of 2010, I visited the ocean at Jones Beach only once. I didn’t have to see it more than that. It was in me.

 

 

REPLY TO ROBIN

Duetting: Memoir 36

Duetting: Memoir 36 Robin Botie of Ithaca, New York, photoshops a maze over an old photograph of her daughter, a cancert patient, to illustrate that there was nothing simple or atraightforward after cancer struck home.

Nothing was simple or straightforward ever again after cancer hit home.

“Let’s toast to summer,” said my friends, as we clinked glasses at our first outdoor dinner of 2010. I pictured berry picking, pond swims, barbecues, and all the feasts we would cook up the next three months. In between Marika’s weekly blood draws and my search for a new teaching job, I would allow myself some time off. Marika had secured her job as boating counselor and lifeguard at the Stewart Park Day Camp. She had her apartment and her car. We both had new bathing suits. Finally, after missing the last two summers, our Best Summer Ever was about to begin. But in our lives nothing could be presumed anymore. There was no straightforward movement towards any end. I should have known better than to celebrate.        

Marika’s friend Rachel, hanging out at Limbo before leaving for summer school at Long Island’s Hofstra University, was also anticipating summer. “I just have Anatomy-Physiology to finish up and then I’m done,” she told Marika, chewing a mouthful of Australian cookies.
“Did you just eat the whole box of TimTams?” Marika chided her. With chocolate crumbs dotting her face, Rachel shook her head, licked her lips and grinned, “You should visit me on Long Island this summer.” But Marika was preoccupied inspecting the countless unaccounted-for bruises on her arms and legs. She knew what that meant.

“What is it about cancer and summer?” I asked Laurie, that night, over the landline. “It’s exactly a year after her first relapse, and that was a year after her first diagnosis. Why always summertime?” We quickly resumed our old routine where I relayed to Laurie the medical terms doctors threw at us, so she could breathe meaning into them.
“It’s the same type of leukemia,” she said.
“Laur, they told us they ran out of drugs to treat her with,” I wailed.
“Well, there’s one mega-problem with the second relapse: there are no standard forms of treatment.” I squeezed the phone as Laurie continued. “The only option is to find an experimental drug in Phase Two of its clinical trial, meaning they are ready to try the drug on significant numbers of people—I guess the mice must have lived.”

“So what’s the good news, Laur?” I asked hoping to eliminate the scenes of squirming cancerous lab mice stuck in my mind.
“She might get to keep her hair?” Laurie said, questioning herself. “You get to travel,” she added, more sure of this possibility. The Roc Docs had been consulting with colleagues in Chicago about a drug being used in Japan. They wanted to send us to Chicago, but Laurie went online and discovered clinical trials for the same drug being conducted on Long Island. In order to get a new drug, we would have to show up regularly at a cancer center. We couldn’t simply have a new box of pills mailed to us and just continue with our lives. So we were on the phone making plans to go to North Shore Medical Center in Manhasset, one town over from where I grew up.

“I hate Long Island!” Marika stated. Emphatically. I shushed her, and hunched over the phone.
“Can you come down the day after tomorrow?” Pat Li, our contact nurse at North Shore, asked. The quick responses from the clinical trial people surprised me. Did they sense our desperation to do something—anything—to be rid of cancer? Or did they need us, need more human guinea pigs? We packed half-heartedly as Marika had not yet been accepted into the program. We wouldn’t find out if she qualified until our first appointment. If she did, we would remain on Long Island for three weeks. If not, we would turn around and go home. There were too many questions either way. Like where would we stay if she qualified? And what would we do if she did not? Whether or not her father’s health insurance would cover it, I didn’t dare consider yet.
“Wifey, it’s only seven minutes from my school,” Rachel said joyfully to Marika, “You’re definitely visiting. We’ll have a blast.” Oblivious to Marika’s sentiments about Long Island, Rachel was already making plans.

“I’m not going,” Marika said on the morning of the first appointment for the clinical trials. She had slept at the house to make for an easier early morning departure. It was time to go, and I was anxious about dealing with New York City rush hour traffic, finding the medical center, and maybe being told she didn’t qualify for the trial. “I’m not going,” she said again, banging the refrigerator shut. We had at least a five-hour drive ahead of us and she was already being difficult.
“Mareek, this is our best bet to get you into remission. Our only bet.” I was sweating, and my head was beginning to hurt. “What on earth is the problem?” I was losing it. My voice got higher. Louder. “I’ll meet you in the car in ten minutes,” I said, praying things would not explode into an outright war, or worse, in her disappearing on me. I’d made breakfast and delivered the tray to her room. I’d walked her dog and driven it to family friends who would take care of it. I made Marika’s special tea with lemon and honey in a thermos for the road. So she was supposed to cooperate now.

“I. Don’t. Want. To go.”
“Okay, what do you need to have happen so that we can get moving? Because I’m getting nervous. This is not my idea of fun. Who wants to be driving to Long Island? Of all places! I thought I was done with Long Island years ago.” I was ranting uncontrollably, “And they might just send us home with nothing. And then what? You would miss our last chance for a cure because you don’t like Long Island?”
“I don’t want to talk,” she said, her tone matching mine. “I’ll go, but don’t talk to me. If I hear your voice I’ll jump out of the car.”
I opened my mouth, then caught myself and nodded instead. But she had already thrown herself into the back of the car with earphones plugging her ears, her thermos of Get Gorgeous Tea and a thick invisible wall between us. We drove in silence and got caught in morning rush hour traffic, as I knew we would.

As far back as my mind can remember there was anger every place I called home. I was attracted to it and it followed me everywhere: my childhood ranch house on Long Island, the palace on Ithaca’s West Hill, the homes by the ponds. Anger lurked in the walls and ceilings, in the carpets and closets, in every corner. It seethed in the spaces between the inhabitants. It was inherited; it was contagious. It could boil for months, sometimes seeping through the cracks before erupting completely, violently. My own small blaze was mostly suffocated in passive-aggressive smoldering. I got away with that for most of my life. And when I should have been most angry, my little fire turned to ashes. It disappeared somewhere in the sad miles and years of shuffling my young children back and forth between two simmering households. I watched the anger grow in my kids. My son eventually found it useful for survival in combat. In Marika, it came out in fierce tantrums. By the time cancer crept into our lives, my own anger had mostly dissipated in the raging storms around me. Seeing it in the eyes of the ones I loved, chilled my heart.

“Let me know if you want me to stop at this rest area,” I said, breaking four hours of silence. “I think it’s our last opportunity.”
“Don’t talk to me!” She kicked the back of my seat. For the first time I wondered, if we were to go home that day, if she might possibly be able to ride back with her father and his wife. They were already in the waiting hall of the medical building on Long Island.

Finally, we were stuffed into a small office at the medical center. More chairs were crammed in to accommodate Marika’s father and his wife. And Rachel. We had not planned on including Rachel in this meeting but everyone was grateful to have her there. With her EMT training, she was savvy about medical proceedings, and the one thing we could count on was Rachel’s ability to calm Marika. Besides, somehow she always showed up, whether or not she was invited.

Pat Li and the new doctor introduced tamibarotene, our new drug. The TammyBear-o-Teen pills were parceled out like expensive French truffles. They were to be taken mindfully, at particular times twice a day. Each dose was to be checked off and recorded in three places on various forms. The drug was ten times more potent than the ATRA Marika had taken the first two summers, the ATRA that had given her seizures and landed her in the ICU with respiratory failure. The good news was there would be fewer and less severe side effects with TammyBear-o-Teen. And Marika would not lose her hair.

“It is not a cure,” they reminded us. “A transplant is the only cure, and for that she must be in remission. This drug will get her into remission, and then she can have a stem cell transplant. As soon as possible.” I finally understood the whole plan. We could all see where we were headed. It seemed straightforward. Simple.

 

REPLY TO ROBIN

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.

Reply to Robin

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.

 

Reply to Robin

Duetting: Memoir 33

Duetting: Memoir 33 Robin Botie of Ithaca, New York, photoshops a duet about cancer deaths and losing a loved one.

“They’re flying in the wrong direction,” Marika said. “The geese. They’re going the wrong way.” She was living back at home after her year in college and second summer in the hospital. We were about to leave for the hospital in Rochester when we heard, overhead, the shrill commotion of geese in their winter migration south. Autumn departures of geese are head and heart-turning events in Upstate New York as the sky fills with their cries, long before one spots the approaching V-formation of their flight.

“Maybe they’re just circling before they leave Ithaca,” I said. She was right. Wrong direction.
“Stupid geese,” she muttered, still staring up at them, expressionless.
“Well, we always end up driving the wrong way, and we have GPS and road signs down here,” I blathered, watching the commotion disappear. She grimaced briefly in my direction and plopped into the passenger seat.

To accommodate the complex treatment in autumn 2009, Marika and I drove to Rochester three times a week with an occasional overnight stay. The Roc Docs were urging us to move up there for two months, for the rigorous schedule of dialysis, spinal chemo injections, and IV arsenic treatments. Social workers had researched places we could rent nearby that had no stairs. But we wanted to stay in Ithaca. Carpenters installed handrails in the house so Marika could reach her bedroom upstairs. None of this fit into Marika’s plans once she’d been sprung from Strong. She wanted to get on with her life, to be free of me and doctors and cancer. The social workers abandoned the idea to have us relocate, and were suddenly helping Marika apply for social services so she could afford her own apartment in Ithaca. There were conversations that didn’t include me now.

Life was gray and clouded, like the autumn sky over Ithaca, as we waited in a holding pattern: Marika hoping for funds to help pay for an apartment, and myself, anxious about locating a donor for a bone marrow or stem cell transplant. Greg was not a match. I was edgy because it was a risky procedure. Also, Marika had completed her chemotherapy, and the protocol demanded a pause in treatments before the transplant. Which meant there was nothing holding the cancer at bay.

On a dark afternoon in mid October, we sat in the Cardiology Center at Strong. Marika was intently studying her cell phone, her head at an exaggerated angle to accommodate viewing texted messages with her good eye. She looked up slowly from the phone, right through me, out across the empty waiting area’s loveseats and end tables.
“Jake died,” she said, more to herself than to me. Then she was silent.

I glanced at her still tearless face and didn’t know what to say. The other almost-adult child with cancer was gone. And in my head something was cracking. Something piercing and threatening that I needed to escape. Much later I would wonder about the mother with a broken heart somewhere in Pennsylvania or New Jersey, but at that moment I muted everything. Marika and I returned home from the hospital and retreated to our individual rooms.

In November, we drove to Roswell Park Cancer Institute in Buffalo for a second opinion about the transplant. The new Buffalo doctor examined Marika and read her history while I waited, crammed into a small conference room with her father and his wife.

Doctor Wetzler had riveting eyes. And a kind of compassion I didn’t understand. We’d never met before and would probably never see him again. We were summoned into the exam room and it felt like when I enter an expensive boutique shop knowing I will not be buying anything. Doctor Wetzler purposefully touched each of us with his deep warm eyes, and then began,
“Marika is not strong enough to survive a bone marrow transplant.” He said, “With her damaged heart, a transplant would be fatal at this time.” There was silence. The world froze still as we digested those words. She could die? The cure we’d been waiting for and counting on for so long could kill her?

“She should have her own stem cells harvested and frozen after several months of chemo,” he continued, looking at Marika, “when you’re free of leukemia cells. For a future transplant. Your heart needs time to heal.”

So. No transplant. No more risky procedure with bleak survival rates, possible organ damage, donor cells attacking normal tissue. Life-threatening complications. No more. Nothing. The lead blanket we’d been living under was suddenly lifted.

So Marika and I quickly headed for the car and drove the few blocks to the Anchor Bar and Grill, home of the original chicken wings. We ordered a feast. She took sips from my beer and waved a wing in the air. And then she told me her news, what I knew was coming sooner or later, the other issue I’d dreaded for months.

“Mom, there’s an apartment and I’m gonna get a monthly check now so I can afford it and Julie lives there and it’s in Collegetown,” she bubbled over in a long overdue spark of excitement. A storm grew in my gut. The wings on my plate grew cold.

 

 

REPLY TO ROBIN