Duetting: Memoir 52

Robin Botie of Ithaca, New York, photoshops old and new photos into a collage  to tell the story of her journey to Australia with her daughter's ashes.

In southeast Australia, in the tiny town of Port Campbell, in the room with the bay view, I wake to sunlight and sounds of birdsong. I wake from dreams of carrying too much in too many pieces, endlessly trying to hold on to what I have.

What I have is an explosion of memories. And Marika’s poems. And a couple of photographs to guide me to where, in Australia, Marika had been when she was here two years before. And it’s Friday, so there’s a V-Line bus that runs along the Great Ocean Road. If I time my day right and catch the bus coming and going, I can ride over twenty-two miles back and forth and, in-between, spend the day walking trails in and around the sites Marika had photographed. If I hop on and off the bus like Marika did I won’t wear out my feet and energy just in traveling to all the places I want to go.

The bus lets me off near the Loch Ard Gorge, and I climb down countless sets of wooden stairs to stand in the place Marika had stood, posing with a finger to her lips, a dubious expression on her face. Loch Ard means ‘high lake,’ but I am low down in the sand between two caves and a blue bay. ‘High’ are the two massive walls of stone that surround the small beach, leaving open only a narrow gap to the sea. “Eva’s cave,” I remember from the legend, and head toward the larger cave.

When I first saw “Eva Carmichael and Tom Pearce” written in Marika’s scrapbook, I thought they were the names of rock stars. I didn’t know Loch Ard was the name of a large clipper ship that sank in 1878, leaving these two the sole survivors. Inspired by tragedy and romance, Marika had written a poem about the two eighteen-year-olds. I, too, am captivated by the story of the apprentice sailor Tom swimming out in the dark, in strong winds and huge waves, to rescue Eva who clung to a floating part of the wrecked ship in only her nightdress. He carried her to a cave and at first light climbed the high cliffs of the gorge to find help. Tom was heralded as a hero, and the townspeople hoped for a romantic union of the two, but they went their separate ways. “She’ll stay forever alone, ‘cause it’s her way, she’s going back home,” Marika wrote twice in her short poem. From the local literature, I learned that Eva fainted, was weak or unconscious for hours, hid terrified in the cave awaiting Tom’s return, and had to be carried with difficulty up the cliffs. But Marika saw her as strong and in control. I saw Marika as strong and in control. I wonder how she saw me.

For a long while I stand watching, trying to see into the long dark cave. I do not enter. My courage has not yet replenished itself from the rogue wave at Bells Beach. Luckily the waves are small here. I finally roll up my pants and wade into the shallow water. No one is at the Loch Ard Gorge this early in the morning so I sing lullabies to Marika as I toss her ashes in small sprays. Then, gathering strands of seaweed that litter the beach near Eva’s cave, I arrange them to spell MARIKA in large letters. Soon people trickle down the stairs into our space. I wait to hear them say her name aloud when they see the seaweed letters. This past year friends hadn’t mentioned Marika, afraid they would upset me, and I’m desperate to hear her name and talk about her. But I don’t want to make people sad, ruin someone’s day with the intrusion of a pathetic mother who lost her daughter. I pack up to go. Except for my footprints in the sand and Marika’s name in seaweed, I leave no trace of us.

It’s a short walk east along the Great Ocean Road to Gibson’s Steps where 86 stairs are carved into the face of the cliffs high over crashing waves. Supposedly, if I climb all the way down, I can walk on the beach and see the giant rocks rising from sea level. But I see rising frothing water below, so I sit on a step halfway down, and picnic on a cold beef-and-Guinness pie from my pack. I consider how one journey leads to another, and how in every place there is a story waiting or some lesson to be learned. If I were traveling with another person I’d be braver. I’d cover more territory and do more things. But then, I wonder, anchored to another, how much of the story might I miss?

Backtracking west a short way along the rugged cliffs from Gibson’s Steps, I reach The Twelve Apostles, the major highlight for many travelers along the Great Ocean Road. Here, twenty million years of marine organisms’ skeletal fragments have built up into steep limestone towers. Endlessly attacked by blasting winds and the savage Southern Ocean, their cliffs crack and erode into caves and gorges. These eventually collapse into towering stacks of rocks. Not quite twelve of these rock giants stand in the teeming surf where time, wind, and water continue to gut their softer spots, giving them character. Isn’t it always the most common universal elements, like pain and loss, which shape human lives as well? I wonder. In pounding waves, I picture the rock stacks as giant matriarchs bellowing thunderous laughter. Life constantly crashes down around them while nesting seabirds find comfort in the nooks and crannies of their capstones.

I throw Marika’s beaded bracelets off the overhang as hard as I can to reach them. The giants gobble up the jewels, adding the bits of glass and plastic to their accumulations. Then I spend the rest of the afternoon with them, thinking of time, ongoing life, and the hearty women back home who saved me by listening. Now over thirty women, made stronger by life’s poundings, share my stories with their daughters, cousins, and friends. They’ve sent me encouraging words. I hug the last quarter of my daughter’s ashes in awe of the greatness that surrounds me. And worry, what will I hug once the jewels and the ashes are gone?

 

 

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Duetting: Memoir 51

Duetting: Memoir 51 Robin Botie of Ithaca, New York, photoshops the storm of dealing with her daughter dying of cancer.

The Shipwreck Coast. That’s the name of an eighty-mile section of rough coastline off Australia’s Great Ocean Road. At its midpoint, the town of Port Campbell hugs Two Mile Bay, a calm spot on this perilous coast with otherworldly names like Port Fairy, Moonlight Head, and Wreck Beach. It is off-season here in March 2012. That is why I am able to get a motel room facing the bay, and a table with a seaside-sunset view at 12Rocks Café Beach Bar. Eating beer-battered fish I study the cliffs, the stunning backdrops to the dramas of over 180 ships that sank off this coast. A lot of ghosts, I think over my glass of white wine. The only accessible spot to the stormy Southern Ocean, Port Campbell long ago became known for coastal rescues and shipwreck salvaging operations. It was from this stretch of beach that rescue teams were launched using rockets to fire rope lines out to sinking ships, to help bring in survivors. Sometimes the sea was so wild that those hanging onto the lifelines were washed away in the turmoil of being rescued.

On another rocky shore, on the third day of March 2011, Marika’s father called my friend Celia to come to the hospital in Rochester, so I wouldn’t be alone for the Letting Go of my daughter’s life the next day. But I pretended Celia wasn’t there. And I did not call Rachel or tell Laurie. Laurie would be heartbroken. She’d want us to hang on until she got there. I wanted to spare her the sorry trip. I wanted to spare Marika any more time of pain now that the time of miracles was over. Besides, now that I could see where it was all heading, I wanted my daughter for myself.

Alone with Marika in the glass fishbowl of the ICU room, I rubbed her feet, aware of the four teams that still took turns hovering near the door, peering in like buzzards checking out road-kill. The dose of Propofol had been upped to paralyze her so she could no longer work against the breathing machine. They said she felt nothing now. She was in deep trusting sleep as the monitors and mechanical devices ticked on.

If I had known how to face and share the awful conundrum convulsing in my head, I might have said: Marika, you put up an awesome fight. There’s no leukemia left in your body. But your lungs have been destroyed. And you have no immune system. I’m scared, Mareek. The only thing they can promise is more infections, more organ breakdowns, pain, a life attached to oxygen tanks and ventilators, maybe feeding tubes forever. I can’t let them hurt you any more. Your dad and I are letting you go. You are dying. For someone who prized independence and wanted to control the way you lived, you’re being given no choices now. You’ve been cheated and it isn’t fair. I’m so sorry. I wish I could make it all better. I love you and I always will.

Cut! I wish I had said that. But that is not how it played out. “Rewind. Replay,” as Marika would have said. Reality this time:

“Hang in there, Mareek,” I whispered, hoarsely. “Everyone is taking good care of you … so you can rest now. Stop fighting the breathing machine … it’ll be okay.” I kissed her arm near a small mole. And then my hands on her numbed feet kneaded a wordless love song. A silent dance over her soles, over and over: I love you, I love you, I love you, … It was like I was swimming in slow motion, in aimless circles, still trying to hang onto and lug my lifeless child back to shore. Still lifeguarding. Remaining vigilant, protecting and keeping watch over my precious charge. It was all I knew how to do. And slowly it dawned on me that soon there would be nothing left of her to guard. So, yielding to the miserable truth, the next thing, the only thing to be done was to fill my stinging wet eyes with her face. Memorize her face. The face that always fascinated me. The lavender-lined eyelids, her perfect nose, her rosebud lips. The face that, even when steeped in anger at me, was the most beautiful and best part of myself.

We all get caught up in storms. On the Shipwreck Coast in southeast Australia, the dangerous rocks just below the water’s surface have dashed many a ship to shards in storms. Sometimes captains lost their bearings. Or the pilots didn’t see through the heavy mist until it was too late to change course. Things got out of control. Ships smashed into pounding surfs. They capsized and couldn’t be righted. Passengers still on the sinking boat could see big fires built on the beach to warm survivors, but no one saw the reality of what was happening until the blue emergency lights burned and the rockets were firing. And in the commotion of it all, maybe there wasn’t even a clear second for the desperate ones on the doomed vessel to realize, “We are not going to survive this.”

 

 

 

 

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Duetting: Memoir 50

Duetting: Memoir 50 Robin Botie 0f Ithaca, New York, photoshops an image from a dream about dying.

“It would take a miracle,” the ICU nurses said about the possibility of my daughter’s recovery. But we’d seen Marika pull off miracles before. They said, “Each day on the respirator lessens the chance of her ever getting off.” She’d been under for almost two weeks. Her lungs had not responded to the special drugs they’d ordered. So the Roc Docs used something called PEEP to force oxygen through. Then a hole developed in her right lung.

Her father and I had agreed we would allow no painful interventions, but when Marika’s right lung started to collapse, we let them shove a chest tube between her ribs. A day later, when the short-lived victory from that procedure dissipated and the left lung started to go, we allowed them to plant another tube through her left side. Nothing helped. Her lungs were shot. We continued to hope and pray past the time the doctors would have quit, pulled the plug, and sent us home.

“When you start to hear the same grim prognosis from the four different teams of doctors, it will be time to consider withdrawing life support,” our social worker said.

Withdraw life support. Is that how it was to end? Like this was an everyday procedure— you either produced a miracle, like she’d been doing for the past three years, and get wheeled out of the ICU to the unit down the hall—or you died amidst Code Blue chaos with staff shoving the family out the door before scrambling around to resuscitate and electrocute—or you got unplugged. I hugged myself, and begged my beautiful girl, “Do something, Mareek. Do something NOW.”

We’d never talked about the healthcare proxy. Armed with little more than that signed piece of paper, I did not know how to begin to guess what Marika would want. Would she want to live if she couldn’t sing or walk? If she were tethered to oxygen tanks for the rest of her life, stuck with feeding tubes forever, would she want to go on? What if she was trapped inside her head, could think but not communicate, could feel pain but not move? When it comes to considering death, people grab at every grain of hope, giving up more and more of what they once felt was important for a good life. I was grasping for anything. I’d take meager crumbs. The dregs. But what would she want? Would Marika sit, strapped to a wheelchair with an oxygen tank, living on memories, and feel life was worth living? And not fight, forever, for more?

“She wants everything possible to be done to keep her alive, unless it becomes hopeless,” Rachel said when I called to tell her I didn’t think Marika would make it. “She also told me she doesn’t want to cause more suffering for her family and friends.” Marika said that?

“We should put her on a DNR status, Do Not Resuscitate. So if her heart stops, she won’t receive chest compressions or electric shock to re-start it,” Laurie said. “That would only cause more pain from broken ribs and wouldn’t preserve the quality of her life. But don’t give up on her yet. Her blood pressure is good, her kidneys and liver are working well. Her blood cells and platelets are coming up, so the transplant is working.”
“So we just need a miracle to remedy the small matter of her blasted lungs,” I said.
“She’s been at death’s door before,” Laurie reminded me, “and has pulled out a miracle and survived.”

The Roc Docs said she was sinking. It was just a matter of time. It was not presented to us as a choice: to pull the plug or not pull the plug.
“No, not yet,” I begged on Friday when she’d been pumped by PEEP for multiple days. “Give her the weekend,” I pleaded, clinging to Marika’s feet and urging everyone to whisper, in case she could hear.

On Tuesday, the first day of March 2011, the seventeenth day on sedation, the four teams, one by one, filed in and out saying, “Sorry.” I clutched Marika’s feet and rubbed madly. I watched the life I had guarded for almost twenty-one years drift farther beyond my reach. They’d given us all the extra time they could to wish for a miracle, and over the weekend hope had ebbed away like a receding tide. A strong current was pulling me out into uncharted waters, to a place no one I knew had been before. Whose child dies before their parent? I wondered. How could this be happening?

“It’s time,” I remembered my father announcing at his end.
“It’s time,” the social worker said.
Drained and defeated, Marika’s father and I finally both agreed. I said yes, and signed the paper that said my daughter’s life was to be ended.

My bedside notebook for recording dreams caught only nightmares then: I was fished out of rushing water, dripping wet, and hauled up to the whitewashed docks above by a rope. Caught. I knew I didn’t belong there, that being there meant I’d be executed on the spot. I huddled, cold, wet and miserable, trying to make myself small on the hard dock while my captors considered me. A sympathetic one pointed to a place just above my tailbone, urging the other to shoot there, where it would be kinder. Closing my eyes, I waited for the shot to shatter my bones and end my life…. Later that day, I realized that the tailbone area was where Marika got her spinal fluids drawn and chemo injected. Maybe this was really a dream about Marika. Even in my dreams I had a hard time separating her ordeal from my own.

The second day of March was barren and gray now that we had accepted there would be no more miracles. I moved like mud. Heavy, frozen, lifeless mud. Marika’s life would be taken the next day and I had a dilemma: to tell her or not.

Even heavily sedated, she might be conscious on some level, or in and out of consciousness. But if Marika couldn’t say anything, couldn’t say goodbye or “I love you,” if she wasn’t able to express anything or even move a muscle, what would she do with this information? For the first time ever, her father and I agreed immediately on something. We did not want her just lying there, drowning in fear and anger, unable to communicate. So we whispered and tiptoed around her, holding her hands and head. I did not tell her she was going to die.

What is the bigger tragedy: losing your loved one suddenly without a chance to say goodbye? Or knowing your loved one is close to death and not talking about it? I did not know how to talk about it. So I just stood there, silently, stroking her face with my eyes.

Much later, I would find these lines crossed out, in a song in one of Marika’s journals:
“My mama strokes my hair and tells me I’ll be fine now,
‘We gonna take care of you.’ But her eyes tell me she’s hiding a lie.”

We’d had a conversation or two when she was very young, about how not saying something is like lying. So I was lying. I was not being honest anyway.

There was more. Worse. What, later, I’d give anything to be able to rewind and replay: I did not tell her, “I love you.” As she drifted farther away from me, I did not dare say it. I hadn’t said it enough. Does it mean more when you say it less? Does it mean less when you say it more? And what did it mean to my precious girl that I didn’t say it at that time?

Because if I told her then, “I love you,” she would know it was the end.

 

 

 

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Duetting: Memoir 49

Duetting: Memoir 49 Robin Botie of Ithaca, New York, photoshops a duet of a song written by her daughter who died, in a consideration of The Middle Ground.

“What’s Middle Ground?” I asked Laurie, my sister-the-doctor, at the beginning of February 2011.
“Well, first of all, it’s not a medical term,” she said. “Basically, ‘Middle Ground’ refers to a shift in the treatment plan from an aggressive, do-anything-and-everything-necessary-to-keep-someone-alive approach to a more selective one. So, if Marika’s heart stops, we’re not going to shock it or pound on her chest, but if she gets a reasonably easy-to-treat condition (like a bladder infection or strep throat), we would go ahead and treat that. In a way, ‘Middle Ground’ is a bit like ‘Limbo’, the apartment Marika shares. It’s a place somewhere in between. Between knowing that you’re winning the war and when you get those first inklings that you’re going to lose. So you wait, in Limbo, for a sign, for some hint as to when or whether she can come up with one more miracle.”
“Oh,” I said, and Laurie could hear my dread.
“Middle Ground does not mean that anyone’s giving up,” she said, “but we all know it’s the first step toward that end, the end that no one is yet ready to acknowledge.”

So we were one step closer to that place into which I had not allowed myself to go. Outside, in the ground under the snow, tender tips of crocuses emerged into the wintry world before their time. They’d be gone before spring.

After the late night call from the Intensive Care Unit, when I got back to the hospital, Marika was floating in and out of consciousness. Sleeping Beauty, strung all over in plastic lines, was once again on center stage attended by nurses, aides, all types of technicians, and now, multiple teams. Besides the ICU docs, there was the somber cluster of oncology docs, a very animated squad of infectious disease docs, and a new tiptoeing team from Palliative Care. Bevies of doctors, social workers, and residents took turns entering and exiting her room, taking notes and quietly exchanging comments. A mysterious respiratory infection, they said; we wore masks and gowns around her now. No one really knew why her lungs were failing. When she became the least bit awake, she tried to speak. She yanked her cords and tried to climb out of bed. They gave her more drugs to quiet and contain her. She was fighting everything now.

“Please don’t speak to your daughter,” one of the nurses said to me shortly after I got back. “She is at maximum dosage levels for her sedation drugs, and when she hears you it is difficult to keep her sedated.”
“I can’t talk to her?” I wanted to make sure I’d heard right. In disbelief, I quietly rubbed Marika’s feet. But soon, when I whispered to a nurse, Marika heard me and woke. She pointed at me with an incriminating index finger, as if she could shoot a dagger straight through me. She lowered and then raised her hand, slowly, like a ghost, and suddenly gave me – The Finger.

The horrified nurse sedated her more. Hurt, and afraid of what Marika might do next, I kept quiet. But what I really wanted to do was shout to all the doctors and nurses, “Damn you all! She’s my daughter!” I moped for hours in a funk until I learned she’d given her father the same greeting earlier.

A day later, while I silently rubbed her feet, she opened her eyes.
“Mom!” she mouthed through her tubed and taped lips, looking straight at me. She extended her arms like she wanted to hug me. Her face scrunched up and turned red. Her mouth stretched the tape with a concave bottom lip. She was crying.
“Mareek,” I called, and left my station by her feet to step closer. “Oh, Mareek.” I reached out to hug her. But before I could touch her, the nurse stepped up the sedation. Marika’s eyes rolled back as her lids shut. Her arms dropped in slow motion. Her words, her thoughts, everything was snuffed out. I stood over the still form of my daughter, not able to remember the last time we’d hugged. In my mind I replayed the scene. She’d reached for me. Her eyes had said everything: “Mom, I’m scared. Hold me; help me. I’m sorry. Thank you. Mom, I love you.” I stared at her face and hugged myself, and returned to the foot of the bed. And then the nurse asked me not to rub her feet.

I was blind-sided. I stood there dumbfounded. Foot-rubs were my only connection to my daughter now. I couldn’t just let her lie there alone. She’d wanted to hug me.

Greg, on a tentative seventy-two hour notice to return to Afghanistan, came to Strong to say goodbye to his sister. Marika had known he was hired to go back as a security agent. But she was unconscious now and seemed to hear nothing. He didn’t stay long. He whispered goodbye and turned to go. Suddenly she lunged for him. She flew over the bedrails, tearing the lines that tethered her to the IVs. She grabbed her brother. In seconds, she was stopped and sedated some more.

Rachel arrived for a visit, and I darted out for a fast trip back to Ithaca. Rachel’s eye make-up, the tight skinny jeans and French-tipped nails made me realize how long it had been since I’d seen Marika up and dressed. I must hurry home, I told myself, to renew my driver’s license that would expire soon. Mostly though, I just needed to get out. I needed to drive far and fast.

Rachel ambled down the long hallway with a huge rainbow balloon trailing behind her. And two hours later, at the Motor Vehicle Bureau, I stood before a clerk who tried to get me to smile for the photo ID that would be with me for the next eight years. For eight years, my eyes in that photo would say, “Marika, we need a miracle now.” I faced the camera unable to think of anyone or anything else. Rachel sat with Marika and held her head, reading aloud the goodbye letter she had written, just in case. She drove back to Ithaca that evening, stopping at a liquor store for a bottle of Svedka Vodka to tide her over. I drove back to Strong early the next morning crunching on an apple to keep awake. The Big Meeting was scheduled with the Palliative Care team. So Greg drove to Strong, as did our social worker. My children’s father and his wife were already there. We were going to discuss The Middle Ground and “options,” things I wasn’t able to hear yet. I didn’t want to listen to any of these people. I just wanted to rub Marika’s red painted toes and watch for the tiniest twitch of her pale brow.

 

 

 

 

 

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Duetting: Memoir 48

Duetting: Memoir 48 Robin Botie of Ithaca, New York, photoshops a duet of a dream she recorded with a song written by her daughter who died with leukemia.

My daughter was measured and marked for radiation. In a waiting area down the hall, I chewed at my cuticles as Marika got the first of her full body radiation treatments. She had to be seared and zapped cell by cell in order to live. It made me nauseous. They wheeled her back to the room on a gurney and she napped the rest of the day as I sat, waiting in the dimmed light by her bedside. At dinnertime neither of us could eat. I gently rubbed her feet before driving off to Hope Lodge.        

At Hope Lodge on Tuesdays I got free massages. Thursdays it was free dinners prepared by a group of med students. I took Bernadette, a cancer patient who lived there, out for port on her birthday, and watched another resident cook aromatic African dishes. In the afternoons I explored Swan’s German Market, the Public Market, the Monroe County Library, and Captain Jim’s Seafood, always bringing back some bit of Rochester for Marika. Each day I exhausted myself into oblivion. And then the transplant preparations got stepped up.

“Preparations,” Laurie said over the cell phone, “is really a euphemism here. What it really means is wiping out her blood cells and immune system with chemotherapy and radiation, and then ‘rescuing’ her with the donor’s cells.”
“Laur, what’s the deal with GVHD?”
“Didn’t you read any of the stuff I sent you?”
“I did, but it sounds better coming from you,” I said.
“Well, Graft Versus Host Disease is a fascinating condition. What can happen, just about any time in the first year or two after the transplant, is that the immune cells in the donor marrow can begin to attack the recipient’s tissues and organs. They still think they have to protect against ‘foreign invaders,’ and are totally clueless that THEY are the foreigners.”
“Yeah, they warned us it could get nasty,” I said, wincing.
“It’s her only shot, though. There are no more drugs capable of giving her a cure,” Laurie said. I knew that. I was still stuck on the part about the donor’s cells attacking tissues and organs “any time in the first year or two.”

It was snowing on transplant day, January 26, 2011. All morning long I watched outside the hospital window and checked online for weather-related transportation delays. Finally, midday, a courier delivered the stem cells in a picnic cooler. I collapsed on the end of the bed. Giddy with relief, I even smiled and joked with my ex-husband who had arrived with his wife and a cake. We gathered around to watch the donor’s blood product slowly seep into Marika’s veins via a long tube in which I pictured tiny cells charging forward on teensy running feet with swords pointing ahead. We had a little birthday party, and toasted to Marika’s new life, with Martinelli’s bubbly apple cider. After, in a trance, I washed my hands in the non-patient bathroom down the hall by the elevators, and sang softly, “Happy birthday to you, happy birthday to you. Happy birthday,” I choked, “dear Marika.” My eyes filled. My jaw quivered, “Happy birthday.” It was like whispering a prayer. Only I was downright pleading for my daughter’s recovery, “To you.”

The next morning, I returned early to the hospital from Hope Lodge. Marika sat in bed peering down at her chest, her head angled to accommodate her good eye. She was flushing out and disinfecting her own port as a nurse gave directions. Glancing up at me, Marika smiled. She looked ready to take on the world. Like she could deal with aggressive foreign cells, or doctors who dared to tell her No, or whatever else life might throw at her.
“Mom. I just got accepted into the University of Technology Nursing Program. I’m going to Australia next year.”

Two weeks later, on a Friday afternoon in early February, she was pedaling away on an exercise bike someone had left in her room. In sweat pants and a tee shirt, she almost looked like her old self, the athlete, the soccer player, the powerhouse-Marika who would sneer at my panting as we jogged around the block together.

The car was packed for my trip home for the weekend. I felt torn, as I always did, whenever I left Strong.
“Don’t forget to put your laundry in the new blue laundry bag,” I reminded her.
“O-Kay, mom,” she said, dismissing me.
“And remember to keep yourself hydrated. No caffeine drinks.”
“Mom, okay.” She rolled her eyes.
“And when’re you gonna take these pills that have been sitting here all morning?”
“Mom! Get a life,” she barked. “Go.” Conscious of my nagging, I silently picked up my computer and the old green bag of dirty laundry. I walked out the door. Without a look back.

Late that night I got a call. Marika had been admitted to the Intensive Care Unit with pneumonia, low blood pressure, and respiratory failure. She’d asked for me as it became more and more difficult to breathe, while her doctors and nurses awaited her consent to be sedated and intubated. Somehow, at home, before racing back to the hospital early the next morning, I slept. I know, because I wrote down my dream.

 

 

 

 

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Duetting: Memoir 47

Duetting: Memoir 47 Robin Botie of Ithaca, New York, photoshops her daughter who died of leukemia amid a screen of falling blood cells

Sometimes I got my life mixed up with my daughter’s life. Like whenever Marika’s blood was drawn, I felt the pain. And once, in the ICU, I watched the monitor display her racing heartbeat for so long, I had to be taken downstairs to the emergency room as my own heart quickened and surged. Marika was getting the transplant, but I was getting a severe panic attack. As we waited for the transplant, I had to remind myself to relax. To breathe.

Late in the afternoon on December 1, 2010, the Roc Docs entered our room looking defeated. I worried, maybe something had happened to our donor. Doc Phillips was back, heading the team. But he did not look like his jolly old self. He sat down heavily and began with a long sigh.
“You are no longer in remission,” he said to Marika. Remembering how we’d postponed the transplant for her concert, I couldn’t bear to look at her.
“So there’s no transplant?” I heard a small voice say. Was it mine? Or Marika’s?
“Things have changed. We do have some good news out of all of this. We have a silver lining,” he said, recovering some of his cheer. “A silver lining,” he repeated. We waited, shaken. “The presence of leukemic cells makes you ineligible for the donor transplant. But,” he said with a dramatic pause. “But, remember that collection of stem cells we harvested from you last March, after the arsenic treatments?”
“Yeah. And then I got leukemia again three months later,” Marika wailed.
“Well, the new plan is to give you an autologous transplant using those cells, your own harvested cells, in the next day or two. This won’t cure you, since you had leukemic cells shortly after the harvesting, but it can get you back into remission briefly. And then you can have the donor’s-cells transplant.” I hugged myself and wondered how many more months until we were on the way to being cured. Relapse number three, and it wasn’t even summer yet.

The autologous transplant was a quick, uneventful procedure, so at the end of the week I went home to Ithaca. When I returned on Sunday, an electronic piano had been moved into the hospital room. New posters were taped onto the wall opposite the bed. The place had a cozy, lived-in feeling, a look that smacked of exuberant festivities.

“How was your weekend?” I asked, trying not to sound overly nosy.
“Mouth sores,” she said gloomily, reminding me of Eeyore from Winnie the Pooh.
“Oh, I brought you Vitamin Water. Maybe that will help.” I unpacked food items, fresh laundry, and mail. Gift bags and an assortment of drinks from her father and his wife already lined the windowsill. A big shiny balloon sailed above the end of the bed, which meant Rachel had been there. I rarely saw Rachel anymore as she worked weekdays. She must have brought the half-eaten chocolate cake that sat on the bed-tray too. They’d had a big party here all weekend, and I got to come back to Eeyore.
“Can’t talk,” Marika said sullenly.
“That’s not good. Are they giving you lozenges or something?” I asked.
“Can’t swallow,” she said, grabbing the croissant I’d placed on her tray.

In the next few days her cell counts rose to acceptable levels and we went home for the holidays. Our donor, the complete stranger who was going to share his blood, rich with stem cells, so Marika could live, would wait for us. Again. For the end of January. I wrote and rewrote a thank you letter to him that the Roc Docs would deliver. The holidays sped by quickly. I celebrated everything I could. Chanukah, Christmas, Kwanzaa, the Winter Solstice. I made tiramisu. Marika and Greg took me out to Bandwagon, a new Ithaca restaurant and brewery. He bought dinner. She gave me her new CD. I gave them each hundred dollar bills wrapped in new gloves, with Chapsticks and chocolates.

“It’s not finished yet. The CD. There’s another song to be added,” Marika said. She sat across from me wearing a turquoise head wrap, large hoop earrings and eye make-up. She had a party planned for after dinner. Her friends were home from college, and she was cramming what she could into her nights. During the days she came home from Limbo to do laundry and sleep. She’d creep down the stairs every so often, “Mom, ‘s there anything to eat?” I loved that time before the donor transplant. It was peaceful. Quiet. Like the calm before a storm.

Deep, dirty snow mounded up along the roads in Rochester on the morning we arrived back at Strong for a full week of chemotherapy and radiation. I piled Marika’s belongings onto a stray wheelchair in the parking garage. My own things remained in the car to be unpacked later at Hope Lodge, the cancer families’ home away from home. I stashed away her bathrobe, slippers, and toiletries exactly where they were in the last room, and then, just as I pulled up a chair, Marika handed me a three-page typed document. Fumbling for my glasses, I saw it was a list of all the places in Rochester I could visit for free.

“You’re not staying,” she said firmly. “I don’t want you here all the time anymore.” For a few stunned seconds I stood there trying to collect myself.
“But your cancer is my cancer,” I whimpered.
“Mom. Get a life,” she blasted back. For a few more seconds I forgot to breathe.

“Okay, but I’ll be here every morning for the doctors’ rounds,” I said, “and then I’ll leave until dinnertime.” She loved her dinners. “And I’ll be on the treadmill in the family room for an hour after rounds each morning, if you need me—need something.” Despite my bruised feelings, I was gaining momentum. “Otherwise I’ll be at Hedonist Chocolates, Wegmans, The Owl House Café, or Dinosaur Barbecue,” I added, naming her favorite Rochester eateries, “or any of the places on this list.” The plan worked for two days, and then the effects of the radiation kicked in and things started to get scary. On the third day, after the morning rounds, she flashed me her pathetic puppy-face as I got ready to leave.
“Aren’t you gonna stay?” she begged.

 

 

 

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