Tag Archives: mother daughter relationship

Duetting: Memoir 17

Duetting: Memoir 17 Robin Botie of Ithaca, New York uses Photoshop to illustrate how caregiving is like lifeguarding.

“When can we go home?” This was the one question I could always get away with in the hospital. It was our routine: ignore the nasty details, and push through to whatever we needed to hear in order to breathe. “She wants to know when she can go,” I’d say, but really, I, myself, hated being stuck in that creepy sunless hospital where I was turning languid and pale, sitting day after day immersed in my Ken Follett novel, World Without End. I was just as desperate as Marika was to be out of there. With luck, this second round of chemo would bring her blood counts back to normal and get her into remission. But Marika now had yellow skin and eyeballs. She was miserable with a head cold, fever, and stomach aches. Two weeks before, the Roc Docs discovered her inflamed gall bladder, but the surgeon couldn’t operate because she had no white blood cells to fight infection and too few platelets to stop the bleeding. Instead, they stuck a drainage tube in her side. It was now grinding against her tolerance.

“Mom, this sucks,” she yelled at me like it was my fault. We were constantly working to keep the tube and bile collection bag tied up in place with elastic bands and pins, tape, or anything that would hold until they could remove her gall bladder.
“Mom, where’s the tube?” she suddenly bellowed at me as if I’d taken it.
“What do you mean, where’s the tube?” We’d focused on little else the past week.
“The tube’s gone,” she said urgently.
“What did you do with it?”
“Maybe it fell out when I was in the vision clinic?”
“You left the tube in the vision clinic?” I said in an exaggerated accusatory tone, trying to stifle a giggle. We both broke out laughing at the thought of some unsuspecting half-blind patient finding the bile tube sitting abandoned on a waiting room chair. We needed to laugh. Cancer had become a summer-long project and the path to remission was riddled with setbacks. It looked like it was far from over, and Marika was tired of being a cancer patient. I was just getting the hang of caregiving.

Being a caregiver is a lot like being a lifeguard. Except as a caregiver I had just one swimmer I didn’t dare take my eyes off of. And she’d already sunken a few times, so I told myself I knew what danger looked like. Still, the lifeguard in me rarely rested.

“Any minor cold you pick up, with your compromised immune system, could turn into pneumonia. A friend’s pinkeye or cough could end up in septic shock for you. A virus could lead to major organ malfunction. Any stray little fungus or bacteria could kill you. So, no sushi,” the Roc Docs reminded us. Marika wanted sushi takeout for dinner. She always wanted sushi.
“Oysters?” she tried again in a tiny voice.
“How about cooked sushi? You know, the ones with cooked shrimp,” I contributed, trying hard to keep peace and establish common ground. Doc Phillips conceded to that and my eyes checked in with Marika’s.

“Can I get a pass to leave the hospital for a few hours?” she pushed. She was always pushing. I went for the compromises while she straight-shot for the prize. “Can I start college next month?” It was the big question of the summer. It was what we all prayed for, but didn’t dare plan on or shop for, in fear of jinxing the whole possibility. There was still too much that could completely dash that dream. And we never knew where trouble would come from.

“There’s no more cytarabine. So we’re sending you home. We’re sorry,” the Roc Docs announced days later during morning rounds. “We tried to get some from other area hospitals but there’s a nationwide shortage.” My eyes met Marika’s for a brief second before turning back to the doctors in disbelief.
“But that’s my main chemo drug now,” Marika whimpered.
“We’re sorry.”
“Call your dad, I’ll call Laurie,” I said, not fully digesting the significance of the situation but aware this was news they would want to know about. A good lifeguard is always ready for the unexpected; one never knows when it’ll be necessary to leap in and pull somebody from disaster. I made the arrangements for a homecoming, and packed up efficiently as nurses removed Marika’s IV. Then, suddenly, two young residents charged into the room out of breath.
“They’ve located the drug in Buffalo at Roswell Park Cancer Institute. It’s being sent over now.”

By the time the IV team returned to go through the tedious process of locating another vein on Marika and replacing the IV, I was wilted over the foot of the bed.
“Mom. Mom!” She blasted her eyes at me and bucked her chin toward the technicians surveying her arm. I’d almost forgotten my opportunity to squeeze her hand.

 

 

 

 

 

Duetting: Memoir 13

Duetting: Memoir 13 Robin Botie of Ithaca, New York, photoshops a picture of her daughter who died of leukemia to illustrate the confusion and chaos that follows the initial diagnosis of cancer.

The Roc Docs ordered another bone marrow biopsy. It was to be done by two residents, girls who looked no older than Marika. By then I knew about the trickiness of this standard bedside procedure, the need to get the right angle, the chances of missing the exact spot from where the marrow fluid was to be drawn, and the possibility of not getting enough material extracted. We asked about their success rates and the tools that were to be used. The docs assured us it would be nothing like the procedure performed at our local hospital. We agreed to give the resident-girls a chance. But if they didn’t get the sample they needed in two attempts, it would be quits.

They marked the spot with an X, and showed me the door, but Marika grabbed my hand and wouldn’t let go. Grateful she wanted me, I took my position at her shoulders once more. The resident girls missed at their first try. Wrong spot, no fluid. Marika produced a roar like a cornered tiger. They focused on their mark once again, and the world stood still. I watched Marika scrunch her eyes and grit her teeth. Three women hung over her, each in breathless silence. And suddenly one of the girls’ cell phones rang.

“Enough! I’m done. Get out,” Marika screamed at all of us. And then Marika made her second sound medical decision as an adult: no more biopsies without anesthesia. “I want Ver-sed,” she announced, coached over the phone by Laurie. Magic words. Biopsies with anesthesia meant no more bedside biopsies. And no biopsies by residents. The Roc Docs shrugged and shook their heads, surprised that insurance would cover it. So from then on, all Marika’s bone marrow biopsies and spinal injections would be done in the radiation department, with anesthesia, by an angel named Iris.

A week later we were twelve days into cancer, and Marika’s excessive bleeding was barely under control. I reluctantly left her to return home for a job review, the timing of which was not negotiable. Driving home from the hospital, I considered the logistics of the next day: the appointment to revive my neglected hair, the search for my pin-striped interview suit, and time to do laundering before returning to Strong. I recalled driving Marika to her first job interview a year before. She had worn a strappy tanktop with jeans, and heavy eye make-up.
“That’s what you’re wearing for this?” I’d asked, glancing over at her and grimacing.
“Mom, it’s for a camp job. It doesn’t matter,” she’d shot back. And she’d gotten hired, on the spot, charming them into hiring her for more money than was originally offered. She had that effect on people. I wished I had that. I approached interviews like I was going before a firing squad. I had to work hard to hide the sheer terror blazing in my eyes, my shaky speech and hands.

My cell phone rang and I pulled off the road. An unfamiliar voice gabbled on, something about bleeding lungs… adverse reaction to drugs… respiratory failure… admitted to the ICU.
“Is it serious?” I asked, still oblivious to the signs of disaster. “Should I turn around?”
“Well, your daughter has just been sedated. And intubated. And put on a ventilator,” she said in a voice that sounded like there was a “duh-uh” at the end.
“Sedated? Intubated? Ventilator? What does all this mean?” I asked, completely clueless about drugs that knock you unconscious, breathing tubes and breathing machines.

I turned the car around. And when I got back to Marika, now moved to a glass-walled room in the ICU, I learned they’d almost lost her. Respiratory failure. My daughter had stopped breathing. She was now taped and tubed, strung up and surrounded by chrome trees of drug-filled plastic bags and noisy pumping apparatus that inhaled and exhaled for her. To keep her alive. My own breath was stuck in my stomach. I watched the ticking monitors. We were tumbling yet deeper into the nightmare, into the wilds of cancer.

At six the next morning, when Marika was somewhat stabilized, after my colleagues had confirmed that indeed I must attend the review, and after a long night trying to rest on a tiny couch next to her bed, I left her again. I drove the two hours, got a fast haircut, threw on my suit, and pulled off the interview in a daze, and then traveled back to Rochester still wearing my interview outfit. Too anxious to wait for an elevator, I climbed the eight flights of stairs to the ICU, and arrived breathless at her bedside. Panting, I gratefully grasped her feet.

Days later she was taken off the respirator and transferred out of the ICU. And I was told I could keep my teaching job. Sore from the breathing tube, Marika could hardly talk or eat. But the drugs were working. Her bruises were fading, and her skyrocketed white blood cell count had plummeted to an acceptable level. Everything seemed under control, so when her father arrived I left, again, for the weekend. At home, exhausted from the difficult week, I had just allowed myself to relax when I got the phone call.
“She’s okay. Now. I was right there with her,” her father stated calmly before choking up, “Out of nowhere. Fast. Marika had seizures. Two horrific seizures. They almost killed her.”

There were no words. No breath. No grasp of time or gravity. There were no speed limits or miles or towns between home and the hospital in Rochester. Somehow I drove, and landed, stunned, back in the ICU. I crumpled at the end of her bed too shaken to do anything but clutch her feet and rub. She could have died. Twice, she almost died, and I wasn’t there.

 

 

 

 

 

 

 

 

 

 

 

Duetting: Memoir 10

Duetting: Memoir 10 Robin Botie of Ithaca, New York, photoshops layers of a word cloud to illustrate the stae of her home at the time of her daughter's cancer diagnosis.Our home is Ithaca, New York. It’s a small town, a perpetually young town between Cornell University and Ithaca College. Bumper stickers proclaim, “Ithaca is Gorges.” It’s true. At the south end of Cayuga Lake, the largest of the Finger Lakes, Ithaca teems with frothing waterfalls and dramatic cliffs. Fractured rock continually crashes down these steep craggy gorges, occasionally smashing and rearranging the landscape.

To grow up in Ithaca is to be intimately familiar with Purity Ice Cream, the Stewart Park Carousel, swimming at Buttermilk Falls, and picking out pets at our local no-kill SPCA shelter. Teenagers in Ithaca attend the Winter ChiliFest, the Ithaca Festival, and the nearby Grass Roots Festival, yearly events that draw thousands to the region. Many teens dare to party on Cornell’s beer-flooded Slope Day, and sneak down to swim illegally at Second Dam, a popular swimming hole. They know their way around the ethnic eateries of Collegetown. Ithaca is environmentally, politically, socially, alternatively, and healthfully conscious. Bumper stickers peg Ithaca as “Ten Square Miles Surrounded by Reality.” It suits me. It’s the special place on earth where I fit in.

In 1976, I followed my first husband here when he landed a teaching job at Cornell. We bought land in the countryside and built a palatial home with a pond. There, I started Silk Oak, a small silkscreen-printing design business. I finally learned to drive. Too busy with our careers, we did not have children. After ten years we split, and I got most of the land. I built a small house and another pond. A few years later I married my plumber, the God of Heat and Hot Water. We made the house bigger, and had Greg and Marika. Then I gave away my 20-year-old home business so I could be with the children, to take them swimming, on vacations, to birthday parties and summer camps. No longer in need of the space for Silk Oak, we sold the house and built a third, smaller house with a third, smaller pond on the same land. And when that marriage fell apart, I paid a lot of money to have my second husband’s name erased from the piece of paper that said the house and the pond and the land once belonged to us both. But I couldn’t erase him completely. He was still the father of my two children.

I don’t believe you can own land, the land you live on, pay taxes on, and love. I believe the land owns you. The land I call home claimed me long ago. Here, high in the hills surrounding Ithaca, it feels secluded from the world but is only a five-minute drop down the hill to town. The green hills, the gravelly soil that tries to contain the ponds, the wind which causes frequent power outages. The woods and the abundant wildlife. The valley, and its view of Ithaca College where at each year’s end the dormitory windows are lit up to display the changing digits of the New Year. This land holds me when I’m home. It calls when I’m away. Wherever I travel, my inner GPS is set to the hill west of Ithaca, to Go Home.

To go home in the spring of 2008 was to follow the long driveway from the turn off State Highway 79, just over the crest of the hill after EcoVillage, our local intentional community. Home was the wreck we abandoned each weekday morning, fleeing to our schools. Marika’s was Ithaca High School where she was a senior; mine was Lehman Alternative Community School where, after years of subbing once the kids got older, I’d been hired as a special education teacher. Home was the sweet mess we gratefully returned to late each afternoon, to scurry away into our individual corners until dinnertime, our time together.

It was just Marika and myself then. My son Greg was in the army, always far away in Iraq or at Fort Lewis in Washington State. And there was Laurie. Our ever-present encyclopedia and sounding board, Laurie was always lodged in the phone, the landline. And in the message machine that still held a twelve-day-old recording of her singing Happy Birthday to Marika in her calm low voice, drawing out the final line. We always counted on Laurie for either a short version or a lengthy, but engaging, exposition of the truth. She always gave you choices. She could explain quantum physics in terms a preschooler would understand. She planted cannonballs in your gut, spouting twenty reasons to go see a primary caregiver about your searing pelvic pain. She made you cringe in horror describing the fish-flesh texture of tissue invaded by lymphoma. Or she could get you to relax in grateful relief, telling you the pain you were sure was ovarian cancer was most likely gas.

“Laur, is leukemia related to cancer?” I asked on that first night.
“What’s gonna happen to me?” Marika asked at the same time. Over the phone, sandwiched between Marika’s and my ears, Laurie said,
“Don’t you know anyone who has leukemia?” like everyone on earth has at least a dozen friends walking around hijacked by their white blood cells. Marika, in a squeaky voice on the verge of crying, said,
“Yeah. He died.”