Tag Archives: mother daughter relations

Duetting: Memoir 16

Duetting: Memoir 16 Robin Botie of Ithaca, New York asks, Why is my daughter turning yellow?"

For Marika’s high school graduation gift I was supposed to take her to Greece, but she got cancer instead. It looked like she’d never get her gift. Then, almost two years after her graduation, during a time of remission, Marika came up with a different mission: to get to Australia. On her own, she cleared it with her doctors. By the time she finally presented it to me, everyone else knew about her plan. The only thing left was to purchase the ticket. It was very scary to me because she would travel alone, meeting up with a friend later. But after all she’d been through, I couldn’t say no, so Australia became her belated graduation gift. It was Marika’s last trip, ten months before she died. Looking back, I smile when I remember I gave her Australia; it was possibly the best two weeks of her life. She fell in love with the place and intended to make it her home. It is the end of January 2012 now, and Marika’s been dead almost a year. Soon I, myself, will go to Australia to scatter her ashes and find out why she loved it. This is my mission now. It is the last thing I can do for her. Besides, I don’t think I can live without a mission.

A mission infuses one with an important purpose, a direction. A goal for the greater good. A mission might collide into your comfort zone, hurtling you off to who-knows-where in your effort to carry it out. But it fuels you. And it answers the question: Why am I here?

Missions change. All the time. There were other missions back in the summer of 2008. We had returned to Strong Memorial for the second round of chemo after almost two weeks at home following graduation.

Scrunched up in a reclining chair by Marika’s bedside, I was warmly wrapped up in a dream one morning. Then, in the melting moments between sleep and awakening, the nightmare I took to bed just hours before and thought I’d be wrestling with the whole night, hit—smothering me like a blanket of bricks. Cancer. The day was contaminated by it before I even opened my eyes. A sudden stirring made me blink, and I found the entire oncology team on morning rounds, stuffed into the hospital room. I looked over at Marika. She was still asleep.

“Good Morning,” said a cheery, deep voice.
“Morning,” I managed.
“You had a question, Mom?” Doctor Phillips asked. I hated his calling me Mom, as if he was my seventy-year-old son.
“Oh yeah,” I remembered, “Why is my daughter turning yellow?” I was suddenly awake, aware I was supposed to take notes when the doctors made their rounds. But everything was already moving too quickly. I heard,
“Blocking the flow… bile… from liver… infection…” and something like “collect-sister- itus.” How would I report this back to her father? He had to be in Ithaca weekdays for his plumbing business but wanted to be kept in the loop. My two main missions were to keep Marika safe and keep her father informed. But at that moment, understanding or passing on technical information was beyond my capabilities.

Part of my problem was I missed half of what was said because of daydreaming. When overwhelmed, my mind would fly far away, leaving the rest of me behind looking totally engaged in the immediate goings-on. Sometimes I escaped to sheep-dotted mountainsides in Scotland. Most of the time, I just got stuck redesigning the bleaker aspects of my life.

Part of the problem was I didn’t get much sleep in the uncomfortable reclining chairs. And then there were the hourly vitals checks and lights left on all night. It didn’t help that every third day I woke up in a different room. Marika, with her various complications, got trundled back and forth from the oncology unit to the ICU to the transplant unit and back to oncology. Always a different room in oncology. And I got to pack and unpack all our stuff, sometimes in the middle of the night. Not to mention the logistics of moving home each weekend. To stay flexible, I kept most of our things in the car which was parked a whole hike-and-a-jog down and out and around the other end of the enormous structure that was Strong Memorial. My mission was constantly clobbered by logistics.

Marika was the adult running the show and she didn’t like me shaking things up. Most of the time it was easiest to simply go with the flow, and not question too much (like Marika turning yellow). It was not part of my mission to wonder how many times she might check in and check out of the ICU, narrowly missing the clutches of death. So I’d lay low in a cloud of oblivion. Until something threatened to get in the way of my protecting Marika or getting her well enough to send off to college. I heard,
“… inject dye … implant a drainage tube … gall bladder surgery next Thursday.” It was time to focus on what was going on.

 

 

 

 

 

 

Duetting: Memoir 14

Duetting: Memoir 14 Robin Botie of Ithaca, New York photoshops a picture of her daughter under sedation, resembling the John Everett Millais painting of Ohelia.Only three weeks into cancer, Marika was on life number three. The Roc Docs noted in her charts, “Reactions to treatments—fast and horrendous.” Reluctant to leave her side, I became a slow-moving aerial drone, on top of her constantly, watching and waiting.

“Mom, I can’t see,” she hissed, days after her seizures, when I turned on the television. “Why can’t I see right?” She punched the nurse-call button and tried to yell. It came out as a hoarse whisper. “I’ve lost—everything,” she tried to tell me. Life as she knew it was indeed lost. Her voice was gone. She was losing her hair. Soccer and singing were out. And now almost all the vision in her right eye, and some in her left, was gone. She knew, with impaired vision on top of seizures, it would be a long time before she could drive again. Driving was her independence, her freedom. I was watching a trapped animal, and there was nothing I could do. Stunned by her fury, I shrunk into a corner while she screamed. At the doctors. At nurses and aides.

She demanded to go home, but she’d developed a fever and a mysterious pain in her right shoulder. After tests and more drugs, the Roc Docs decided she had a swollen pancreas. Then the pain suddenly subsided and we were sprung from Strong.
“No raw fruits or vegetables,” the Roc Docs reminded us as I packed the stuffed animals, candy-grams, and other accumulated gifts into pink plastic hospital bins.
“Well, I’m having sushi for dinner,” she stated.
“No sushi. Nothing raw. No flowers, no dirt. No germs. No friends with colds.”

With a long list of instructions, fifteen different prescriptions, and orders to take her temperature several times a day, we left Strong. It was scarier than the time I brought home my firstborn. So as soon as we reached Ithaca, I invited our mother-daughter group to the house.

The living room was packed when Marika asked, “Mom, do you have scissors?” Then she sat with a towel at the dining room table, and her friends cut off her ponytail and shaved her head. Music played and everyone cheered. We ate her favorite cooked foods, grilled steak and Wegmans boxed macaroni. And later, as she and I counted pills out into plastic boxes, I couldn’t stop wondering how this daughter of mine could be so brave. And beautiful, even without hair.

For two nights Marika and I slept gratefully in our own beds. Then a fast-rising fever sent us racing to our local hospital. Marika was sent back to Rochester in an ambulance with her father while I followed behind in my car. But I couldn’t keep up. Shortly into the trip, my heart sank as I watched the speeding ambulance disappear ahead of me.

She arrived in Rochester in septic shock, with breathing difficulties and very low blood pressure. She actually asked to be intubated and put on the breathing machine again. So by the time I parked my car and caught up, Marika was back in the ICU. The shoulder pain thought to be pancreatitus turned out to be pneumonia in both lungs, and a virus had invaded her heart muscle. For two days the ventilator was set to maximum levels. She was given end-of-the-line, last-rites crisis drugs to keep her blood pressure from falling through the floor. I stared at her, hugging my sides to hold myself together. Except for her shaved head she resembled Ophelia in the John Everett Millais painting. Ophelia lying still, and singing. In a river. While drowning.

In a few days, still on the ventilator, Marika was awake with a pitiful look on her face. She patted her stomach whenever anyone entered the room. “Hungry,” she spelled out on an alphabet board, unable to speak through her breathing tube. Half dazed, still under sedation, she could hardly communicate. Giddy to see her finally awake, I couldn’t think straight.
“They can’t feed you anything; you’re still on the respirator. That’s dinner,” I said, pointing to the bags of IV nutrition slowly emptying into her system. The nurses were nervous because she was supposed to be sedated, and instead she was getting more and more agitated. Marika glowered at me like I should do something. She grabbed a marker, and drew a long urgent scrawl on the backside of the alphabet board, and glared at me with desperate eyes. I had a sinking feeling I knew what she wanted, but didn’t want to mention it in case she’d forgotten.

A month ago, she’d written on her blogsite, “as for my graduation…we don’t know what kind of condition i’ll be in on june 26th. and prom… i’m still deciding whether or not to go. i’ve got a date, a dress and will have tickets, but I won’t have hair. ick…” It was clear to everyone but Marika, she would not get out in time for her senior prom. We were still hanging onto a tiny particle of hope she would be able to attend her graduation in another week. I was crushed because I couldn’t make it all better and I wanted so much for something to go right for her. It’s not fair. That’s what she used to say when things didn’t go her way. Since toddlerhood she’d been a strong proponent for her rights. “Not fair, not fair,” she would chant almost daily. But now she had lost her voice. So it was up to me to sing it. Only now, I, too, was mute.

The oxygen levels on the ventilator were turned down as Marika’s lungs dried out. Finally they took her off. Red, and blimped-out from all the IV fluids and steroids, she resembled the Michelin Tire Man. There were tape marks on her cheeks. Strung all over with tubes and cords, she was decked out like a Christmas tree when Marcus, her baby-faced boyfriend, arrived for a visit.
“She looks like she’s gone through the heavy wash and extra spin cycles in a commercial washer,” I warned Marcus.
He asked, “What do I say to her?”
“It doesn’t matter what you say,” I told him. “It’s all in your eyes. Just look at her like she’s the most beautiful thing you’ve ever seen.” Why was he asking me this? I’d run out of words weeks ago, when cancer first hit. We entered the room and he smiled adoringly at her. I almost melted at his smile, myself. And as I tiptoed out, I heard him hesitate and gulp,
“Uh, boy Marika, you sure have a lot of wires coming out of you.”

Days later, on the evening of her senior prom, Marcus came back. The nurses had decorated the room. White balloons and crepe paper. Music played from an old boom-box. They’d dressed Marika and propped her up in bed so that the lacy white prom dress hid the wires and dangling tubes. They topped her off with the red wig my mother had bought. And on the bedside table, set festively on doilies, were two containers of red Jello, the only thing I found in the cafeteria she could swallow without gagging. There was a great stirring in the hallway when Marcus walked in. Almost seven feet tall, handsome in his tux, he carried a bouquet of red silk roses. I scurried from the room. In tears. In grateful peace.

In the hospital there really was something peaceful. For me. For the first time in years Marika wasn’t fighting me. She focused on her disease and the medical staff. I was not the enemy. We even collaborated sometimes, us against them. Like the time we ‘accidentally’ unplugged the monitor when no one responded to the call button. Mostly though, I hung back and didn’t interfere, knowing the side effects of our actions could be horrendous. Knowing that any move we made could start a cascade of consequences. And I wondered how come Marika got to be so bold? How did she not have to consider the consequences?

“I’m going to my graduation,” she announced, to me, and her doctors, two days before the event.

 

 

 

 

 

 

 

 

Duetting: Memoir 12

Duetting: Memoir 12If the muskrat digging holes in the banks of our pond were to continue to bore a tunnel clear through to the other side of the earth, it would end up in the Indian Ocean off the southwest coast of Australia. Marika had picked the farthest place one could go from our cozy home in the hills surrounding Ithaca. But on our first forays into the jungles of cancer, we were being carried off to a world even farther and more foreign, and there was no knowing what awaited us on the other side of it.

To me, cancer was the demise of ancient neighbors, the terrifying realm of beloved grandparents. It wasn’t supposed to happen to one’s child. Although there was Marika’s father’s brother who died at age six, of a brain tumor, over forty years before. How could my daughter have cancer? All I could think was what did I do, or not do, to cause this? Visions of all the used and refilled water bottles in Marika’s room kept haunting me. Dozens of plastic bottles on the floor, in her gym-bag. In the hot car, festering toxins. “That can’t be good for you,” I’d mentioned to her, casually, way before cancer. What kind of mother was I that I hadn’t kept my daughter safe and healthy?
“Laur, you tell Mom. Okay?” I begged my sister, as cancer moved into our lives, clobbering me with guilt. And shame. I couldn’t face my own mother.

Everything Laurie read about Marika’s type of leukemia said that once identified, it should be handled as a medical emergency. By the time it was diagnosed, Marika’s disease was already advanced. Aggressive. So after one night in our local Cayuga Medical Center we dashed up north to Strong Memorial, a teaching hospital at the University of Rochester Medical School. But before she could escape the Ithaca hospital, Marika­­­ had to undergo the cancer novice’s initiation, the bedside bone marrow biopsy.

Marika lay prone in the hospital bed, waiting for the inevitable pain. We both saw the tool. It resembled the antique hand-crank drill I inherited from my grandfather, a carpenter in the 1930s. The doctor marked a spot inches above her tailbone. He braced himself. I held Marika’s shoulders down. He drilled. She shrieked. I cried, silently beseeching him to hurry up. Her face and neck turned red. I focused on the tiny waterfall that scaled her cheek and trickled off the tip of her nose, creating a wet blotch on the sheet. I wondered how they knew I wouldn’t faint. It was taking forever. And when the longest ten minutes of our lives were over, and after the required twenty minutes to stay very still ended, Marika grabbed the nearest thing, a box of tissues, and threw it forcefully at the wall where the doctor had stood.

So by the time we got to Strong Memorial and met that week’s squad of the always-rotating oncology team, Marika was already wary of doctors. Laurie called them the Roc Docs.
“Acute promyelocytic myelogenous leukemia, or APML, has an average survival rate of eighty-five percent,” they said, “depending on complications.” They wasted no time starting an intense chemotherapy attack. Three days later Marika developed her first serious complication. “Disseminated intravascular coagulation. DIC,” the Roc Docs reported. Marika’s blood clotted inside her blood vessels but she bled from everywhere else—every orifice on her body, through every sore, through the tender spot near her tailbone, under the retinas of her eyes, and into her lungs. Always squeamish around blood, I anxiously waited for the nurses to come back with more pads as I applied pressure through soaked gauze on one of her arms. Marika cursed through a towel she held to her nose and mouth. Leaning over to push the call button, I noticed she was lying in a puddle of blood. I did not pass out. An animated movie was playing in my head. It starred my headstrong daughter’s bone marrow that had produced lots of immature unruly cells that didn’t do what they were supposed to. Like those red cells that need to carry the oxygen, and the white cells which should be fighting infections. And her impossibly undisciplined platelets that were supposed to be clotting and stopping all this bleeding. I imagined millions of tiny-legged rebellious cells sneering, careening and carousing throughout every inch of her body. And I was thinking, Marika’s a rebel—clear to the core.

In the non-patient bathroom by the elevators, regarding myself in the mirror as I washed my hands, I saw old tired eyes. My nose usually bullied other facial features for attention, but now, small shuttered eyes glared back at me in cold detachment. I sighed and turned away from the ghostly reflection. Marika had gotten all the good looks in the family. Even sick and strung out by cancer, she still looked beautiful.

It was a showdown: headstrong Marika versus aggressive cancer. The Roc Docs pumped drugs with strange names through her. Daunorubicin Hydrochloride, Cytarabine, something called ATRA that sounded like a sneeze, and something I heard as “Harass-Sea.” There were established formulas for treating this leukemia. Complying with these evidence-based approved protocols was considered the path to beating cancer. In my head the medicines blossomed into yet more cartoon characters, like Sigh-terror-bean, Cytarabine. Donna-Ruby-Sin Hydrochloride. Reactions to these chemo cocktails could be deadly. And when the ATRA almost destroyed Marika but failed to put her into remission, they gave her arsenic instead. That one I knew. In my head I saw the dead shriveled-up mouse I’d found as a kid, on top of the mail pile. “Arsenic,” my Mom had frowned at the mouse, explaining, “I forgot to leave a holiday tip for the mailman.”

Marika had horrific reactions to everything. She retched, and wrenched in pain. I winced as she threw a cupful of pills down her throat with a fast splash of water.
“How do you do that?” I asked, remembering smashing tiny aspirins in applesauce for her just a week before. She shot me a look like I had food on my face.
“Mom. I’m a cancer patient.”