Tag Archives: teen cancer

Duetting: Memoir 18

Robin Botie of Ithaca, New York uses Photoshop to illustrate the journey with her daughter through the wilds of cancer.Depression affects the immune system. To survive bad luck, boredom, painful procedures, endless blood transfusions, and long hospital confinements when it seemed everyone else was out dancing, I conjured up all sorts of distractions for my daughter. Part of my mission was to make something magical happen each day. So I pretended the hospital was our summer resort. The lobby was an esplanade, perfect for people-watching, with the prevailing aroma of roasted coffee, and a player-less piano trilling away. The information desk was our concierge, offering restaurant menus for takeout dinners. Complimentary prune juice cocktails and ice cream cups were always available from the unit kitchen, a few doors down from our somewhat-less-than elegantly appointed room.

“If you could makeover this room, what color would you paint it?” I asked, wanting to draw Marika into my fantasy. She rolled her eyes at another of my stupid questions.
“Orange,” she grunted.
“What about the floor? Orange too?”
“Carpet.” Then she added, “And I’d make this a double bed with a real mattress.”
“I’d put a fridge in over there,” I said, grateful to get her engaged.
“Yeah, and a bar. I could use a martini.” Speechless, I looked at my just-turned eighteen-year-old daughter and wondered how many martinis she’d had.

When allowed off the unit, we escaped to the meditation room with its cool blue-green lights and crocheted blankets that hugged two stuffed chairs. I wheeled her to an indoor courtyard near the far-off dentistry wing. We roamed the endless hallways, searching for the chapel in the depths of the massive Strong. We tiptoed to the newborn babies’ window and peeked through the slats of drawn blinds to watch the tiny wrapped bundles wriggling or peacefully still.
“You were the most beautiful baby, Mareek.”
“I know,” she said, engrossed in the newborns.

“Where are they?” She growled impatiently. We were stranded in the radiation department, waiting for the transport team to take us back to the room.
“Okay, it’s been over ten minutes. I’m kidnapping you. Hold onto your hat,” I said, whirling her wheelchair around.
“Mom! Whoa, what are you doing?” she sputtered as we zigzagged wildly down the hall. “Do you know where you’re going?”
“No, but I bet I can get us back by lunchtime,” I said, surprising myself by my desperation to stave off negativity and the ensuing insults to Marika’s meager immune system. On the way to the room, we meandered through the fourth floor pediatric hall where the walls were painted in bold colors and plastered with distorting mirrors and protruding animal sculptures that begged to be interacted with. Then we were at the door to the Ronald MacDonald rooftop playground. It was deserted so we sat outside in the middle of the chain-link fenced-in yard, four floors up. From my backpack, I removed two tiny containers I’d carried around for days for just this opportunity. We blew filmy, fragile bubbles that flew off into the wind.

“Should I fetch cooked sushi for dinner tonight?” I asked in between bubbles.
“I want steak,” she said, adding “for lunch.”
“Well, if I get lunch take-outs we’ll have to eat hospital food for dinner,” I reminded her. That was our deal: eat hospital food for breakfast and lunch, eat well for dinner. “But,” I offered, “I might be talked into sharing a frozen latte from the lobby after a hospital lunch.” She scrunched up her face and declared,
“Double iced mocha with chocolate ice cream. I want my own.”
“Deal. Do you think we’re locked out?” I asked, nodding toward the door that had closed behind us when we went outside, a last-ditch effort to throw in some further intrigue.

Friends were the best diversion. They occasionally made the two-hour trip from Ithaca to Rochester. Cassie, Carla, Shoshana, Golda, Jeff, Julie, Lamarr, Rachel, and more. Cassie brought an enormous stuffed dog. Carla brought Silviana. Julie always climbed into bed with Marika. There was lots of pizza and Chinese food. And laughter. I left the room most of the time when her friends came. But not before I scanned them for signs of pinkeye or colds.

As it got closer to college orientation, the visits died down. Except for Rachel.
“How’s she doin’?” Rachel asked from Ithaca, ninety miles away.
“Well, it’s funny you should pick this moment to call. She’s in radiation right now. She had a high fever last night and we’re waiting to see…”
“Well tell her to cool down,” she said, “and tell her I miss her.” They called each other “Wifey.” Rachel, a year older, had recently passed her Emergency Medical Technician training. When not in college, she worked for a local ambulance company. I felt totally comfortable sharing the details of Marika’s condition with her. Especially since she always found us, whenever Marika’s health crashed, wherever we landed.

Several times a day, I rubbed Marika’s feet. She didn’t like asking.
“Mom.” She would shamelessly wave a foot in my face and frown pathetically. Foot rub.
“How do you do that with your mouth?” I asked, trying to mimic her pout. “It has to be a short one. I have to write a paper for my class.”
“Why don’t you pull the cancer card?” she yawned.
“What cancer card? What’s a cancer card?” I asked. She smiled with closed eyes, and wiggled her toes in anticipation of the foot-rub.    
“Just tell your teacher your daughter has cancer, Mom. Then you won’t have to work so hard.”

Marika never had to do much to get me to rub her feet; it was the only time now, other than grasping hands when she got shots, I could touch her. So I rubbed her feet when I was nervous, when she was tired, after breakfast, before bedtime. It was a dance of my hands over her soles, a meditative prayer tracing around her ankle bracelet, holding her heels, pulling gently on each of her painted toes. My thumbs lightly pressed butterfly-indentations over the balls of her feet. And finally, I’d slip-slide my palms along the curves of her arches, massaging those sweet feet over and over as though I could knead the cancer out. On hearing bad news, I’d grab her feet. It was my way of hugging her.

 

 

 

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.