In late September 2012, at a campfire with musicians, a friend’s daughter tends the fire. Bent low to the ground, she blows at the coals until waves of flame dance up and embers riddle the air in fireworks of crackling jewels. Her every movement matches the music, and I sit in a lawn-chair, watching, mesmerized. When the fire is really roaring and the fiddles whinny at a feverish pitch, the young woman steps up barefoot on the rocks that circle the campfire. She tiptoes around the fire gracefully from rock to rock as the firelight plays on her face.
“Marika, you’re too close to the fire.” That’s what’s about to burst from my mouth as I watch this girl-woman. I catch myself just before toppling off the edge of my seat.
No one is like Marika. My friends’ daughters don’t really remind me of her. But late the next day, as I stroll over crack-dry leaves in the driveway, there’s the sound of an approaching car crunching gravel, and I feel a hopping in my heart. For seconds, I hear the old dented Toyota pulling up, music blasting, leaves flying behind it. Marika would show up suddenly like this. Just before dinnertime. She’d tumble out of the car carrying a full laundry bag, with Suki pulling at her leash. A cool smoke-tinged breeze brushes by. My deepest sadness is triggered by these sounds and smells. Marika had come to me like this last autumn too. And it had taken a whole winter to creep up out of the dark depths of despair.
“You don’t magically recover in a year’s time,” says Meg, my CompassionNet social worker who still keeps tabs on me, a year and a half after Marika’s death.
“But I’m tired of these triggers wrenching my emotions, at being accident-prone and making poor choices. Forgetting. Falling. Losing things. Breaking things,” I tell her. “Missing appointments was something someone else always did. I can’t even dress myself right. I used to be a teacher. I was a lifeguard. I took care of other people’s children. Except for childbirth, I was never in a hospital for my own care until this past year. Now I’ve broken a wrist, my nose, and two toes. My eyes are cried permanently bloodshot. I had vertigo last week. And Lyme disease. My sister wants me tested for some kind of neurological impairment. Is this how it’s always going to be from now on?”
“Take care of yourself,” Meg says, her brows twisting in opposite directions off her face. And I think, Yeah, I’m my own lifeguard now.
Sometime after, Rachel phones, “You hafta meet my new girlfriend.”
“Girlfriend?” I’m caught off guard. Why would she want me to meet her new friend? This must be a really special new friend, I think. And then I finally meet up with them, Rachel and her Girlfriend. Not a boyfriend this time. I mull it over and over, trying to get comfortable with an ever-changing Rachel.
These days I’m desperate to have something stay the same. My whole life has changed. It seems like to live is to change, and I’ve been fighting it. And I thought that Marika, being dead, would not change. I’m finally getting to know who she really was, but even dead—and after a year and a half I can finally say ‘she is dead’—she is changing too. Or, maybe it’s our relationship that’s changed. Marika—her ghost—is no longer fighting me. I noticed that. Somehow, now, she’s cheering me on.
“Always, Marika,” she used to sign her letters, notes to friends, emails, … everything. Was that a plea to remember her or her pledge to always be there? Was it a wink at immortality? Or was it simply a pretty word that could sit next to one’s signature instead of ‘sincerely’ or ‘yours truly,’ without too much thought behind it?
Who dares to say “Always” in a world plagued by climate change and ozone layer depletion? How could she sign something “Always” with deadly global viruses, nuclear weapons proliferation, water pollution, terrorism, financial meltdowns, and ecological destruction all over the planet? With freak accidents, madmen with guns, asteroid impacts? With cancer. A million things can go wrong. It takes just one to end your “Always.” Always is every time, at all times and for all time. Forever. Continually, repeatedly, in any case and without end. Always is the sun rising and setting, hopefully. Time. Space. Rocks, maybe. Even earth may not be around for always.
I will not be around for always.
Shortly after Marika died I found a small gold ring in her room. In many cultures a ring, an unbroken circle, symbolizes infinity and undying love. However, this ring is one of those adjustable bands where the ends don’t meet. As soon as I put it on, I knew it would snag on something someday and fall off. Sooner or later I will lose it. But I’ll wear Marika’s ring as long as I have it; when it’s gone I won’t regret not tucking it away in a box or someplace safe. Can I treat people this way? Like they are not forever? Can I treat my own life this way, like it’s not for always? Marika lived like she had only an hour left. How differently might we all live if we had expiration dates stamped on us like cartons of milk?
Cradling the bag of Marika’s ashes on Bells Beach, in the southeastern coast of Australia, I dip a hand into the cool graininess and it comes out chalky. The wind throws my first fistful of Marika back at me. It takes a few tosses to get the hang of it. Soon the ashes dance from my hand and curl away with the wind before they dust the water. It’s mesmerizing. It’s like playing. Like when I used to swing Marika around in the pond singing “Ring Around the Rosie” and “What Shall we do With a Drunken Sailor.” I would raise her up and dump her into the water. Ashes, ashes, we all fall down. “Again,” she’d beg, “again.” Now, sprinkling small handfuls, I watch smears of ash clouds gently rock on the water’s surface. Sand drags through my grasping toes as I slog through water that alternately swells and retreats. At each toss, the sweet grains of Marika drift slowly beneath the surface as the ash clouds rock and recede, and rock and recede, and rock and – BAM! Crash. I gasp. Cold. Wave. Almost knocked down. It fizzles away. Fast. But I’m soaked. Catching my breath, I look around. No one is near. If I drown or am swept away, I might never be found.
Half the precious ashes are gone. I hug the shrinking bag close to my pounding heart. Rogue wave. Enough ashes for today. I’m shivering. Still stunned. And wondering how I’m going to do this. How can I throw the last bits of my daughter to the sea and then return home to the other side of the world without her? And what will I do about Puppy? I pull the stuffed animal from the pack and pose it on a rock. Giving Puppy “back” to Marika is part of the mission. I’d planned to cremate Puppy on a beach, but fires are prohibited all over Australia except in protected barbecue pits. I’m squeamish around matches and lighters anyway. Marika was right. I’m a wimp. Scattering ashes is hard enough. But, barbecuing Puppy?
Shortly after Marika’s birth I had bought Puppy. Drawn to her myself, I gave her to the daughter I loved more than myself. Puppy went everywhere with Marika, and may even have gone to Australia and back. Puppy was always my key to communicating with Marika, often my only chance of swaying her to see reason. My words came out differently when channeled through Puppy. Puppy didn’t say, “Don’t you have homework to do?” She said, “Can I do homewawk wiv you?” How can I destroy Puppy? Ragged love-worn Puppy. With her long floppy ears, she often got mistaken for a rabbit. She looks a little haggard now in the sun with her saggy stuffing. Propping her upright on the rock, I remember regularly fishing her out of the hospital bed and posing her so Marika, returning from radiation, would find her on top of the bed, hunched over a tea mug with a napkin and cookie, like Puppy had a secret life of her own. I snap Puppy’s photo. Okay, what a dope, what the heck, it’s just a piece of stuffed polyester. But no, Puppy is not only my connection to Marika. She’s a part of myself I can’t let go of yet.
The trip back across the beach and up the long sets of stairs is lonely. But by the time I reach the heathlands, I feel Marika riding piggyback on my back again. She has fallen asleep now. Her head rests on my shoulder, and I hear tinny music sounds from her iPod ear-buds. Plodding on under the weight of her, I think about my own time for being carried. What did my own mother carry me through? That day in the waves at Jones Beach, when I lost hold of her hand, did she panic? Did she know, for a brief time, how it feels to lose a daughter? Was she plagued with thoughts of what if, what if, what if, like an ongoing heartbeat? It must have been hard this past year for my mom to see me so empty, carrying around only memories of my only daughter. She can’t stand to see me grieving. Maybe that’s why she tells me to get over it.
It boggles my mind to consider all the caring and carrying that every person who ever lived represents. Each one of us was carried, fed, and tended to. In one fashion or another, someone keeps a child from ruin. Then comes growth and change as the young life evolves into its own person. And finally comes separation. Into two strong, independent but deeply related beings. At some point the child begins to carry herself off. And the mother who held tight begins to release. There is a healthy split as mother and child divide into two. This is something one should be able to count on: like the tides, like summer following spring. Like your children outlasting you. You go through the normal processes of life and then—separation. But that was interrupted. Marika died. Separation, when a mother’s tug to hold close is not opposed by the daughter’s push to be free, is like fog. You vaguely sense something moving but cannot grasp exactly what or where it is. I envision all the love I invested in Marika wafted up into some universal cloud, a collective care blanket encircling the earth.
When the first anniversary of Marika’s death approached, my family and friends expected me to be done grieving. It was time to let her go, they said. But I wasn’t ready. I wanted to keep her. I could hold forever the memory of unending power struggles with my beautiful, cranky, uncompromising daughter. Besides, she had already written how to live on: she was going to carry her friend Jake who died. So I would find ways to carry her. With me. For the rest of my time. Until I myself must finally be carried out.
I carry Marika out again the next day. Her ashes. And since it’s a Thursday, there are no public buses coming or going in the little town of Torquay. If you have no car, you can only come to or leave this place on a Monday, Wednesday, or Friday on the public V-Line buses. Eager to start the next part of my journey, I book a spot on a private tour bus coming in from Melbourne in order to get to the other end of the Great Ocean Road. Which is how Marika traveled, hopping on and off a tour bus at a bazillion different stops.
The tour bus takes me to the Great Otway National Forest where giant ferns grow in thick moss, and ancient trees with trunks large enough to live in, climb to the sky. There are endlessly cascading waterfalls. This place is magical. It is dizzying. I smell the earthy magnificence of eons of time. If we were time travelers, Marika and I would be colliding into the same brief moment. She was here only two years ago, standing in the buttresses at the base of a primeval tree, posing for a photo. Which tree? From the elevated boardwalks that wind through the dense rainforest, I look around at the huge stands of mountain ash and myrtle beeches estimated to be two thousand years old. Gazing up and down, I see how infinitesimally minimal our being here is. My love, my grief, all the things that consume me are like one single tiny spore on a fern in a massive gully of ferns that have been reaching out for thousands of years from under immense forests of towering trees. Time is the endless sky beyond the forests. I cannot fathom it.
“The bus,” a fellow passenger points to his watch. Last to board, I fall into my seat as the bus takes off. It stops at a convenience store in the middle of nowhere, for lunch. It stops at a site where wild koalas hug eucalyptus trees, and bright-colored parrots land on my head. We visit lookouts, and learn the legends of the Shipwreck Coast. And towards the end of the day, the bus pulls into the petite town of Port Campbell. It drops me off at the Loch Ard Motor Inn, home base for the third leg of my journey.
Two women laugh heartily in the back room. I wait at the desk, listening a minute before I call to them. One comes out smiling warmly at me. That’s all I need to feel at home. And in my new room, I assemble the little altar on the counter under the hanging TV, and pose Puppy hugging the bag of ashes. The chocolate is gone but I lay out colorful ticket stubs from the bus tour, and the photos. Holding the old photo of Marika on Bells Beach, I touch the bag of ashes.
“Thank you, Mareek. All those gifts I gave you, all the best things, you’ve given back to me now: Suki, the cowboy boots, your love of writing, Puppy, Australia, … so much.”
I’d given her life. And maybe, in some way, she was giving life back to me too.
“Mom, get a life.” Maybe that’s what I’m really doing here in Australia.
Marika’s Australian scrapbook is filled with names and words. Excited scrawls strewn over the pages: “Suki wishing well” and “Wishing Tree.” “Flying foxes.” “Floating stage.” It becomes a game, a scavenger hunt. Her words are clues that set me loose fishing for what she saw. I canvass my way all over Sydney, and question people in the streets to find what Marika found.
Which of the countless statues of dogs was a wishing well that reminded her of Suki? She wrote “Hot Sake,” so I feast in Asian eateries, imagining her delight at being able to drink legally in Australia. She wrote “seagull and Big Mac.” Could she have seen the same seagulls and egret punching around the MacDonald’s bag that only the long-beaked egret could successfully reach into? “Weddings!” she’d written, and I could feel her joy. Words are no longer just words. They are stories. ‘Weddings!’ is a story. ‘Wishing’ is a story. And the word ‘ashes’ is now my tour guide who tells me, “Mom, you hafta go to the Queen Victoria Building,” and “Go to Darling Harbour.”
I pounce on this city like a young child attacking a pile of presents. At Taronga Zoo I follow koalas, quokkas, and rabbit-eared bandicoots. At the Aquarium, I stand in awe, surrounded up and down and on all sides by fish that swim serenely to classical music. Hanging out near the University of Technology, I find exotic Chinese Gardens and flocks of colorful parrots. I follow my nose through aromatic Asian and Italian neighborhoods, and pick out a live barramundi fish to feast on in Chinatown. I scarf down fish fries on the wharf and stuff myself with mashed pea-and-meat pies at the Harry’s Café de Wheels truck. Hot on Marika’s trail, I eat ice cream and crepes for breakfast at Pancakes on the Rocks.
The streets are lit up when I go to see The Marriage of Figarro at the famous Sydney Opera House. A huge chandelier is suspended over a floating stage on Sydney Harbour for the next evening’s performance of La Traviata. Loud funky music blasts out of shops along Elizabeth Street where everything is young and full of life and light, all day and long into the night. For four full days I ride the buses and walk endlessly in and out of markets, shops, museums and parks. I hop on a ferry and toss Marika’s jewels into the water at Darling Harbour and off the Harbour Bridge. Dropping her bracelets into deep water, it feels like I’m planting her here.
On the evening of my last day in Sydney, I am on a ferry I took out of the harbor in order to get free Internet access. I need to be in touch with my support squad. It is time to leave Sydney, the easy part of my trip, the first part of my four-part journey, where I’ve gotten comfortable and now feel safe. I send out a message to my friends: I’m emailing you from the middle of Sydney Harbour! We just passed the Opera House. Looks like we’re headed for the Pacific now … connection could quit any time … hope this ferry returns to the wharf eventually… more to follow.
I’m kicking myself for assuming the boat would return to the same place. Like home, I don’t expect I can really get back, not like the way it was. And what can one assume in a place where you don’t dare drive because people drive on the left and pass on the right? As it turns out, I can’t even walk properly in Australia. For four days I’d bumped into people and done a do-si-do dance with them in the street trying to figure out who was supposed to move over, and where, to let the other pass. Until some BIG guy coming from the opposite direction grumbled in his adorable Australian accent, “Yer in ‘Stralia now, yer not in America, darlin’. Stay lift!” I got it. Just in time to leave the crowded streets of Sydney, the city that whispers to me, “It’s okay, your story’s no sadder than anybody else’s here.”
And in Sydney Airport once more, headed for Melbourne, I’m coddled as if there’s a sign on my front saying ‘delicate.’ I’m told I don’t have to take my box of ashes out for inspection. I don’t have to remove my shoes. And in a state of disbelief, I completely forget to take out my plastic-ziplock bag of liquids. So forgiving is Sydney. She purrs, “We’ve seen it all before.” And at the airline counter, the agent offers, “Since you’re here two hours early for your flight, we can send you on the earlier flight, no extra charge.”
‘Sydneysiders’ they call themselves proudly. What a warm, sweet beginning to my journey. Doing Sydney first was like starting a meal with dessert.
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.
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.