Tag Archives: young cancer patient

Duetting: Memoir 44

Duetting: Memoir 44 Robin Botie of Ithaca, New York, photoshops a love poem written by her daughter who died of leukemia.

I remembered that I never talked to my own mother about love either.

“It will get better, it’ll be okay,” my mother had told me one day when I was lovesick and couldn’t hide my reddened eyes. The words seemed so lame then. It took decades to finally find the truth and comfort in her simple response, “It’ll be okay.” Eventually I learned love could keep a person going, could stretch a person to her best. It could make anything beautiful, even winter. Love could keep you fighting for your life. Or it could rip your precious reserves to shreds.

At the end of November 2010, three days after Marika’s concert and still high on our victory, we were admitted to Strong for the stem cell transplant preparations. Punching at her cellphone with frantic thumbs, as I trudged under the weight of our bags, Marika trailed me to our room in the Oncology Unit. OUR room. This was the first time the nurses told me I could have the empty bed next to hers. No more trying to sleep in a reclining chair. No late night drives to Hope Lodge. I stowed away the last of our belongings and noticed Marika on her bed, transfixed on the computer. Crying.

“What’s wrong?” I asked, immobilized.
“I haven’t heard from the schools in Australia yet,” she said in a squeaky pinched voice. She had applied to two Australian universities, hoping to enter a nursing program in January 2012. The Roc Docs had warned it would take a whole year to recover after the transplant.
“Mareek, you just applied a few weeks ago,” I said, “It takes time.”
“I didn’t even get to say goodbye,” she said, tears dribbling down her hot pink cheeks. She turned the computer around to show me a handsome young face with smiling blue eyes and long sandy-blond locks. “He’s going home. He has a girlfriend,” she sobbed.

Slowly, moving closer, in a high voice I asked, “Is this the Australian guy you’ve been hanging with the last few months?” She nodded, choking. Her whole body shuddered, and I remembered the pain of longing for lost love. I should have held her. Comforted her. But it was like I was wading into a cold lake. Tentatively. One frozen limb at a time. I kept my eyes focused on the face on the screen.

“He’s adorable,” I said, not knowing what else to say. She composed herself and added,
“He was always good to me. No man ever treated me better.”
“Then you’ll just have to go back to Australia. It’ll happen,” I said, touching the computer. “It’ll be okay.”

That was all she ever told me about the Australian. That was all I had to know. He made her happy. He made her sad. Somehow, it would all be okay.

 

 

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 42

Duetting: Memoir 42 Robin Botie of Ithaca, New York, photoshops the words and poems of her daughter who died of leukemia, in a scene exploring young love and cancer.

Remember how I warned you—my story bounces around a lot? This will be a bumpy ride. You will be jerked back and forth between times and places. Like now—before I continue with my journey in Australia, let me drag you back to the fall of 2010. Mainly because my heart is always being dragged back there, to the edge of a bottomless pit of regrets.

Autumn is one of my least favorite times. I don’t like to see summer die. Flowers shriveling up, leaves dropping, the woods turning colorless and cold … all followed by the long Upstate New York winter. Just thinking about the upcoming winter totally dims the richness of harvest time and the changing colors of the hills.

Marika, as always in September, was focused on what she would wear for Halloween. In remission, and on medical deferment from Ithaca College for a second year, Marika was taking two music courses at Tompkins Cortland Community College. She was singing again, writing and recording with her music partner, Russ. She and her friends had abandoned the old Limbo in Collegetown for a fresher, tidier apartment with a yard and parking area. Marika’s nights at the new Limbo with the old friends were livelier than ever. They could make Halloween last two whole months.

“On Wednesday, we have to leave for Rochester at seven-thirty in the morning. Do you want a wake-up call?” I asked as we drove back to her apartment after the Monday blood draw.
“So early?” she complained. She resented these trips. But I was excited. At any time, the Roc Docs could announce that a transplant donor had been found.

Two days later, picking Marika up at Limbo, I knocked lightly on her bedroom door,
“Mareek, are you ready?” There was a sudden scrambling on the other side.
“I’ll be right down,” she said, flustered, as she stumbled past me to the bathroom. “I’ll be in the car in five minutes,” she yelled from the toilet, my cue to go wait in the car. Someone was still scuffling around in her room, so I went downstairs to the car, wondering if there was a new boyfriend. I would be the last to know; she rarely shared anything about her love life. What kind of time was this to have a boyfriend anyway? Now that she had cancer my own life was all but halted. How did she get to have … A sudden loud clunk outside the car, Marika was gesturing sharply to unlock the door.

“Next time, I’m going up with a friend,” Marika said, like it was my fault she’d overslept. She threw herself into the back seat, slammed the door, and plugged her ears with the iPod earbuds. The ride to Rochester was long and silent. Who was the guy? I wondered. Much later, Rachel told me about Marika’s Australian boyfriend.
“Oh, the people, the parties, the bonfires, the laughing and drinking,” Rachel said, “all the time. Marika and Pat were so sweet together. She sang. He played the guitar. He told her stories.” Much later, I would find what Marika wrote about her first days with the Australian.

Marika on September 29, 2010:

It was a perfect autumn evening. A gray haze of clouds hung overhead and we just sat outside enjoying every breath, every minute of it. He strummed the guitar lazily while I sat in the grass humming to myself.
Inside we go. Fiddling around with the computer proved futile, and out of “exhaustion” we collapse onto the bed.
I cannot tell him. Not yet. My dream can’t be over yet.
I begin to feel my eyes shut and hear a silent laugh escape his lips out of amusement at my drowsiness.
When I open my eyes I pray he will be looking, but his eyes are closed. I sigh and drift off again a little.
Bits of chatter season the moment.
This is tag. Who will make the first move?
I shy away from the opportunity.
“What are you doing?” I ask myself. “You are leaving soon. He is leaving soon. None of this!”
I fight the butterflies in my stomach every time he moves.

Why do the best dreams always end so quickly?
After neither of us can stall any longer we rise and leave.
I will see him again. Night will come and I will dream again.

The next week goes by slowly. “Opportunity is not a lengthy visitor,” and I certainly missed my chance. I vow to myself that I will not forsake my next opportunity with him.
My next opportunity comes quickly.
We are sitting on my couch, surrounded by my friends. He is playing with my hair.
How I miss my hair.
We move upstairs. I know I should seize the moment, but he doesn’t know my secret. How could he know? He has not yet seen the scars that adorn my chest, or the surplus of medicine bottles in my dresser. He has not read the words in my journal, the doctors appointments on my calendar. Do I give myself to someone who knows not what baggage I carry? Do I tell him? I love that he doesn’t know. I love that he treats me as if I am healthy, normal.
Before I know it, it is too late. Our clothes litter the floor as we dance underneath the sheets of my bed.

I wake early. His eyes are closed. My hand instinctively rubs the scar on my collarbone as I wonder if he knows I am not quite right.
Once he awakens, we head downstairs. He is ready to leave when he asks. He asks the question that I dreaded the whole night. He inquires about my scars. My mind races. Do I lie? Do I risk him running away, or do I give him something else to mull over? I decide that honesty is the best route and I tell him about my scars. I tell him about my cancer.
Suddenly, he doesn’t have to leave. He stays for three more hours. We talk. We lie out in the sun and I listen to his wonderful stories. I try to remember as many stories as I can, knowing that soon I will be alone in hospital with nothing but memories to keep me alive. I try to remember everything: his voice, his kiss, his eyes…

I turn to memories. I turn to happy days. I can’t rewind. Instead my mind replays.

“Opportunity is not a lengthy visitor,” Marika quoted from the musical, Into the Woods, by Stephen Sondheim. It was her mantra in the fall of 2010 as she partied, stocking up on memories. Laurie and I berated her for being in denial. We were supposed to have the transplant now that she was in remission. And who knew how long this remission would last? We were in a race against time, against the incorrigible demon, cancer. Laurie printed out the bleak statistics on survival rates for transplants, and I couldn’t eat or sleep. But Marika—she wouldn’t even look at the pages. Marika was in love.

 

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 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.

 

 

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.