Tag Archives: young cancer patient

Duetting: Memoir 33

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Duetting: Memoir 31

 

Duetting: Memoir 31 Robin Botie of Ithaca, New York, photoshops an old picture of her father and children to illustrate a story about fathers and daughters.

 

On our first night home after weeks in the hospital, Marika could hardly walk. So I settled her into the guestroom downstairs near my bedroom and left her with a commode, a walker, and a Harpo Marx-type bicycle horn.
“Mom, I’m not using that thing,” she said in her whisper of a voice, her throat still sore from the breathing tube.
“If you use the commode by the bed, you won’t have to call, but the horn’s there in case you want help getting to the bathroom,” I told her, not sure which of the three items she was referring to.

“Okay. You can go now,” she snarled, as I lingered in the doorway, knowing how desperately she wanted to be independent of me. Knowing she probably would not call. Then, in the early hours of the morning, I woke to a crash. Running from my room, I found her face down, flat on the floor, in a puddle of urine, unable to get up, tooth in lip, blood, tears. She had tried to walk unaided, and now she was on the floor. Bigger than I, and still bloated from all the IV hydration and steroids, I couldn’t lift her. There we were, stuck. Time to phone her father. I hated that I had to bother him again. I could just hear Laurie’s criticizing, “Robin, you have to stop calling him.” What did she know? Who else was going to help me get Marika off the floor at five in the morning? Marika would expect nothing else.

Her father had moved out of the house in 2002, when Marika was twelve. She adored him. But he could stir up even more of her anger than I did. He was clueless about her. Still, he loved her and tried to please her. He was clueless about me; but with me, he’d stopped trying long ago.

Story by Five-Year-Old Marika

Once there was a squirrel and a bunny that were friends.
They wanted to grow up and get married because they loved each other.
But how could they marry, they are both different animals?
But they loved each other so much that they grew up and got married anyways.
The End.

“Marika’s okay,” I blurted out to her father, first thing. “I’m sorry. She fell. I phoned the on-call doctors and they don’t think we need to go the hospital. I just can’t get her up off the floor,” I said. I wrapped blankets around her and we sat on the wet floor waiting for him.
“I lost my tooth,” she sobbed.
“It’s just chipped. The doc says we should call the dentist later this morning. I bet they can fix it easily. Maybe even today.” I tried to sound reassuring.

“Thanks for coming over. I’m so sorry,” I said, when her father arrived. I looked at him briefly to convince myself I’d once been married to him. For fifteen years. He was not happy about my summoning him so early but he gently picked Marika up and got her back into bed. I thought of my own father while he spent a few minutes with her. And then he let himself out of the house without a glance or word for me. I made another vow not to call or need anything from him ever again.                                      

In my father’s home, I was Daughter Number One. That just meant I’d been around the longest of the three sisters. Often, with no reference to my name at all, he introduced me as, “My Number One Daughter.” When I was with my father, I was a princess. I didn’t have to worry about anything. Money was his currency of love, and he was generous. He started college funds for both my kids when they were born, and happily managed the account during Marika’s one year of college. At almost ninety, he still gave us family vacations and plane tickets to visit him, and dinners out in fancy restaurants. Then, at the beginning of this nightmare summer of 2009, he was hospitalized. His disease, some mysterious ailment, took control of everything. If I hadn’t been in the hospital with Marika, I would have been in the hospital in Florida, with him.

In September, Laurie and I visited our father. In the middle of the night in Delray Beach Hospital’s Intensive Care Unit, we watched him sleep, hooked to machines and monitors, sensor pads pasted all over his worn sun-browned body. His glasses, dentures, and hearing aids lay on the bedside table. He was beyond fixing.

He woke up annoyed, tossing his head from side to side, No. It was not supposed to be like this. He had planned and prepaid for his trip out of this world. The bills had been paid and a large loose-leaf binder was filled with his living will, advance directives, insurance information, and paperwork on everything he owned, including a prepaid cremation. Squinting, he looked at Laurie, Daughter Number Two, The Doctor. The one he’d designated as his healthcare proxy.

“It’s time,” he said, from his hollow mouth half hidden under an oxygen mask, not blinking his black marble eyes that caught great glints of light from the humming overhead fixture. “You,” he said turning to me, in a voice with no life left in it, “go home and take care of Marika.”

Hours later, the nurses moved him downstairs to the Hospice Unit. They herded his trembling younger brother, his broken-hearted sister, his three very different daughters, and all the rest of his family down elevators and hallways, into an empty, sunny room. Where was he, what was taking so long? Was he scared, I wondered? After a while they wheeled him in, unconscious and finally freed from all the life-supporting paraphernalia. He lasted long enough for me to say, “Thank you for making my life so rich, Dad.” I wanted the last words he heard to be “thank you.” I watched him take his last breath. Then he was gone. Dad. My first soldier.

After his funeral I went home to take care of Marika. And I made a promise to be his devoted Number One Daughter forever.

 

 

 

Duetting: Memoir 30

Duetting: Memoir 30 Robin Botie of Ithaca, New York, photoshops her daughter's image under photograph of a handwritten poem superimposed with a typed poem, all about waking up and starting a new life.

Summer 2009 was gone. A second whole summer pirated away by mobs of mutinous white blood cells wreaking havoc with my daughter’s body. Marika had gone under sedation in an altered mental state—as my adoring three-year-old—and at the end of August came out of it, dazed but driven. Fifty-seven days in the hospital. In oblivion, mostly.

“Mom. You’re staring.”
“Sorry. It’s just good to see your eyes open again,” I said, not daring to ask how it felt to wake up near September when she’d lost consciousness in July. Or how it was to discover her friends engrossed in new movies, new music, and new relationships. To have gone to sleep skinny, and then wake up swollen. To find a fresh growth of hair instead of her balding head. To climb to her bedroom after being gone and find things moved, to find a huge pile of mail on the bed that hadn’t been slept in except by her cat that no longer seemed to recognize her. The Rip Van Winkle and Sleeping Beauty stories don’t take into account what it feels like to wake up and find a chunk of your life gone. And I never asked Marika. But much later, I would find her journals and the poem above, Wake Up, and stand in awe of her strength and resolve to pick herself up and build a new life. And when I felt my own losses were too much to bear, I remembered her indestructible hope, and kicked myself to reset my course and carry on.

 

Marika’s Journal, September, 2009:     

            I sometimes wonder if it was all a dream. I don’t feel as sick as most people think, but the doctors still advise me to “take it easy” and “lay low,” which makes living normally and finding a job or an apartment even harder. It feels like it was all a dream until I look at my pillbox. Twice a day (usually), I extract a dose of chemicals—poisons—to heal my would-be dying body.

            My health has improved, so it’s hard to even believe that I almost died three times, or that a few months ago, my once athletic body required two nurses in order to walk. I’ve had to relearn how to walk many times now. After being sedated for weeks on end, your body forgets, and your muscles shrink. What you’re left with is a bed-ridden, weak, catheter bearing, poor excuse for a human soul, who has a long road of walkers, falls, and chipped teeth ahead of it.

            I’m much better now, but I’m not “out of the woods” yet. I may be moving into an apartment with a puppy and starting over where I left my life. It’ll be different now.

 

 

 

Duetting: Memoir 29

Duetting: Memoir 29 Robin Botie of Ithaca, New York, photoshops an illustration of her child in the hospital with cancer holding her favorite stuffed animal.

A good lifeguard is a dry lifeguard. Meaning: a good lifeguard is diligent in predicting and preventing trouble. I remembered this from my training days at Camp Scatico. Waking up on a Sunday, I had my cry, did my morning hike, loaded up the car for the week and took off for Strong Memorial. By the time I parked, I had morphed back into my Strong mode. Starting the week off on the right foot, I climbed the eight flights to the ICU, and was on guard again. Ready to meet trouble. I would handle anything Strong sent my way that week.

The Red Cross books on life-guarding and first aid list the first step when you arrive at the scene of an accident: “Survey the scene for danger.” I always got that. My skills in diving underwater and hauling frantic victims to shore were questionable but surveying for danger came instinctively. Always wary of what might lie behind a closed door, in a bag left on the road, at the bottom of a kitchen sink filled with murky water, or in an old takeout container abandoned in the fridge, I exercise caution. So on that Sunday afternoon, arriving back at the hospital, I knew immediately something was wrong.

First clue: Marika’s father and his wife were still there. They wore twin frowns. Marika had been taken off the ventilator earlier that morning, recovering after two unconscious weeks, and now the monitors sat silent and still. I quickly pushed through to her bedside.
“Hi Mom,” she said in a voice higher than I expected. She smiled joyfully at me.
“Hi. Are you okay, Mareek?” I asked, my own voice rising in pitch to meet hers.
“Puppy.” She said, holding up her stuffed animal. I looked back and forth from Marika to Puppy to Marika again, to size up the scene: my Marika smiling at me, waving Puppy. Smiling. At me.
“Hi Puppy, it’s good to see you again.” I shook Puppy’s threadbare paw. Marika eyed me expectantly as I continued making a mental snapshot of things. Skirting familiar territory, in my special education teacher voice I asked, “Umm, can you count to ten, Mareek?” The situation was strange only because it was my own daughter I was assessing. Off on the side, her father was holding his head.

“Okay,” Marika said eagerly. “Okay. One, two. Three. Mom, Puppy.” She shoved Puppy at me like when she was three years old and wanted me to make Puppy dance. Baby Marika. Yow. What was happening? My little girl was back. And she liked to say “okay.” And now she wanted to sing. So we sang.

Surprisingly, Marika could remember many of the words to past camp songs and from beloved Broadway musicals. She now had me working hard to remember the words to Joni Mitchell’s “Circle Game.”
“An’ go around an’ round an’ round an’ round,” she was stuck like a broken record until I finally changed the tune.
“Oh the sun will come out,” I began an old favorite song by Charles Strouse and Martin Charnin from the musical, Annie, and she joined in. “Tomorrow. Betcha bottom dollar there’s no sorrow, come what may.” I held Puppy up and she watched, totally engaged. “Just thinkin’ about, tomorrow…”
“Keep her singing. It’s improving her breathing,” said Robert, the nurse who was adjusting the monitors next to us.
“Lah la la-la … hang on ‘til tomorrow,” we sang.
“Keep it up,” Robert encouraged, “It’s definitely helping.” Marika and I continued, both struggling to remember the words.
“La la-la-la something—something—sorrow,” we sputtered and came to a stop. And suddenly a deep baritone voice resounded around us,
“When I’m stuck with a daaaaay that’s gray and lonely, I just stick out my chin and grin and saaaaay—Oh—,” Robert sang with gusto, with hand gestures. We picked up our cue.
“The sun’ll come out tomorrow, so ya gotta hang on ‘til tomorrow,” the three of us sang loudly. “Tomorrow, tomorrow, I love ya, tomorrow! You’re only a day a-way!”

“Bravo!” I cheered, and turned to Robert. “You’re brilliant. You know all the words.”
“You wanna know how many school musicals I sang in?” Robert said. “I know all the words to everything. But I think we have to stop singing now. It seems to have increased her heart rate.”        

I assumed Marika was just dopey from the lingering sedation, and that she’d come around shortly. But by Tuesday the Roc Docs were conducting tests to determine the cause of her change in mental status. Laurie was on the phone, upset because the doctors wouldn’t return her calls.
“I’m not used to being an obnoxious, interfering relative, but if that’s what I have to be, I’ll do it. I’ve had a few patients die in the past twenty-nine years, and I can’t help but wonder whether the outcome would have been different had I spoken up and made the specialists listen to me,” she said. “I don’t ever want to feel that way about Marika.”

I’d forgotten one small detail in reporting back to Laurie. The doctors wouldn’t speak to her because Marika had arrived at the hospital this time with her friend instead of me, so the forms listing who should be privy to her medical information didn’t have Laurie’s name added. And now there was intense bleeding, nosebleeds so severe they made Marika’s blood pressure drop dangerously low. The doctors put us on alert. The Red Cross called Greg back from Afghanistan to be with his sister. Diagnoses and hypotheses showered down around us. But I was looking right into the eyes of my baby Marika who could barely see me, but was happy to have me there. And that night, after her father and his wife left, Marika’s breathing rate increased. Her oxygen level dropped and her heart rate shot off the charts. Afraid she wouldn’t be able to sustain the effort she was putting out just to breathe, the Roc Docs shoved the tube back down her throat and put her on the ventilator again.

I rubbed her feet and lay low under the tent I imagined around us, sheltering us from the storm that dropped down in a tumult of medical terms. “Encephalopathy.” “Aspiration pneumonia.” “Chemical pneumonitis.” “Necrosis of the red blood cells.” And “leukemia cells in the spinal fluid.” They drifted beyond our small world where I alternately rubbed her feet and snuck around the tubes and trappings to come closer, to sing into her ear in a high choked whisper, “The sun’ll come out tomorrow, so ya gotta hang on ‘til tomorrow….”

 

Duetting: Memoir 22

Duetting: Memoir 22 Robin Botie of Ithaca, New York, photoshops her daughter Marika Warden as a fierce warrior.

Sometimes I think of our time in the deeps of cancer as one big tumble. Cancer had barged into our home felling one thing after another, like the toppling of dominoes. Everything faltered and failed. Respiratory failure. The falling hair, the fallen-too-low white blood cell counts, the failing immune system. Prone to falling, Marika fell from a hospital bed, she fell down a staircase. She fell in love, she fell out of love. She fell in and out of remission. We both fell into depression. We fell down together in a parking lot near the hospital when I failed to support the weight of her larger frame. Falling behind in my work as I commuted back and forth to keep my job and keep at her bedside, I fell asleep at the wheel one day and ended up in a ditch. Terrified, I kept driving. Scared, worn out. Dangerous. My life was crumbling. And then the sky fell completely.

The chemo failed. We were all fooled. Life and the future are deceptions. Normal, if there is such a thing, doesn’t last long. Everything changes, and you can’t get back to how things were before cancer clobbered the world you once so obliviously flitted about. By the end of June 2009, Greg had been at war in Afghanistan for six months, my father began his own battles with failing health, and I got cut from my teaching job, just in time for Marika’s relapse of leukemia.

And maybe things wouldn’t have ended up the way they did if she hadn’t failed to stay in compliance. That’s what they called it, “failure to stay in compliance.” At some point she’d stopped taking her meds. Who knows why? Marika stopped the chemo maintenance pills that kept her cancer at bay and could possibly have cured her. The pills that might have been the happy end of the story. And she fell to her leukemia again. Her leukemia. As if she owned it, controlled it, and could just get rid of it. But now it owned her, and it would own every last aspect of her life.

“Robin, how many pills are left in Marika’s container of ATRA?” Laurie phoned, flummoxed, one day near the end of June. Laurie’s method of coping with the unknown is to tear it apart, examine every inch, and understand it.
“Fifty-five ATRA left,” I reported back to her ten minutes later. “Why?”
“Well, I called the two pharmacies she uses to fill the ‘scrips, and the math doesn’t add up. She must have quit taking the pills around January,” she said.
“Did she say anything to you?” I asked, knowing that Laurie would come right out and ask Marika why.
“She wouldn’t talk about it,” she said, sounding brokenhearted. Laurie was beating herself up about the pills, like she could ever have known or been able to do anything about it. What was Marika thinking? She’d dropped her weapons. Was she surrendering to cancer? Or was she pretending it just wasn’t there?

Marika, the intrepid warrior. That’s what someone on her blog site called her. My mother called her “a tough cookie.” Laurie dubbed her The Complication Queen since every bit of her, body and spirit, challenged any administration of new drug or routine procedure, resulting in countless complications. Laurie also said Marika was her own worst enemy. She fought blindly, sometimes recklessly, to live life on her own terms. People say you don’t fight cancer; that you learn to live with it. No, this was a battle. We were at war with cancer. I’d look at my daughter and marvel at how brave she was. In the hospital, I tried to be tough and strong so she could feel safe. When she was down I pretended to be a soldier standing guard over her, keeping long vigils. Then on Fridays, I’d say goodbye and go off again and again and again. And on Sundays, I’d march back up to my beautiful trouble at Strong. I pushed myself to be brave. For her. And maybe our war with cancer brought out the best in me. Maybe cancer was my General’s Table. Because that’s when I discovered I wasn’t alone. There were people, beautiful warm-hearted, courageous people, everywhere along the way. I was fighting in good company.

“I’m in Strong,” Marika said over the phone on the last day of June 2009, while I was stuck at Fort Lauderdale Airport, returning from a visit with my father. She said “in Strong,” not “at Strong.” When one is “at” the hospital, it means she’ll be home by dinnertime. But Marika was IN Strong. Again.
“I’m on the way,” I told her. And waiting for the plane back to New York, nothing in that airport was moving fast enough, now that we were soldiers at war once more.