Tag Archives: living with cancer

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 32

Duetting: Memoir 32 Robin Botie of Ithaca, New York, photoshops a photo of Marika Warden taken by Ray Possen that depicts the lifesaving dog that was bought as a cancer companion.

“Mom, why can’t I get a puppy?” Marika asked, as we made our way to Rochester for a routine bone marrow biopsy.
“Mareek, I don’t even want a houseplant right now. We still have a lot of time in the hospital and then you’ll be going off to college again. A dog just doesn’t fit into our lives.” She sighed heavily and put her earphones back on.

Laurie called that evening.
“Robin, I’m really worried about Marika. She is so depressed. I’m serious. She needs a puppy.” (I learned later that Aunt Laurie had already promised her a puppy).
“She has a cat. And guess who ends up feeding it all the time and having to find cat-care whenever we leave home?” I countered.
“Her life depends on this puppy,” she stated, in the same tone as the doctors who insisted her life depended on getting a bone marrow transplant. In our little triad, no one of us could fight the other two united. So I finally relented. We found Suki online, near Rochester, the only female in a small litter of jolly Havanese puppies. We visited her on the way home from a day at the hospital. She was round, fuzzy, and tough, with an attitude that rivaled Marika’s. Still too young to come home with us, she lit Marika’s eyes up and recharged her heart.

Marika’s spirits were lifted even more when she got her driver’s license back.
“Mareek, I need to be in the car with you when you drive the first time or two,” I told her. The Toyota Avalon my mother had given me years before had seen better days. I’d let Marika keep it at college for her second semester. CDs and musty clothes were scattered over the seats and floors, and a cotton-candy air freshener dangled in the windshield. Marika was one of the few women with wheels in her crowd, and the car was a gas-guzzler, so an old coffee can labeled “Donations for Marika” lay conspicuously on the passenger side floor.
“No, Mom. Get a life,” she hissed, horrified at the thought of my monitoring her driving.

Unprepared for this reaction, I yelled, “Mareek, I’m about to finally GIVE you the car but you haven’t driven in months and I’m not gonna GIVE you the car until I know you’re not gonna drive it into a tree.” I gulped, surprised at my own resolve, and even more by her sudden cooperation. Later that evening she came downstairs bubbly, wearing eye make-up and a beaded necklace, a short skirt and strappy little tanktop under her worn-out gray winter coat.
“I’m recording with Russ tonight,” she shared as we negotiated the logistics of the driving. It was still light out as we pulled up to a familiar house and she parked the car.

“Mareek, I know this place. We came here for a party when you were four.”
“It’s Russ’s house,” she said, like I should have known.
“Oh, THAT Russ.” I recalled a rambunctious four-year-old flying down the banister. “I remember him. I took flying lessons with his father at the East Hill Flying Club before you two were even born,” I said. Unimpressed, Marika shot out of the car. I took over her warmed driver’s seat.

“Call me when you want to be picked up,” I shouted out the window, adding something about practicing night driving. She was gone. But her perfume, a hint of lily-of-the-valley mixed with a tanginess reminiscent of mustard, lingered after her as I turned the car to go home. I would wait for her call while she sang for hours with Russ, a percussionist who recorded his music for her so she could uncover melodies and create lyrics. She was proud of her first efforts and shared them with me in the beginning. Making music became her passion. Then it became one more secret, another thing that didn’t include me.

On the day the puppy was finally old enough to come home, the breeder held it up to us. One of the puppy’s eyes drifted sideways. Its top hair was pulled up tightly in a pink barrette. Marika and Suki curiously examined each other face to face.

“This hairdo has to go,” Marika said, pulling the barrette out as soon as we got in the car. Settling Suki in her arms for the long ride home, she cuddled and cooed, and they both fell asleep. Driving, I remembered the first times bringing my babies home. And I wondered if someone with no immune system should be housebreaking a puppy.

“Let’s go potty, Suki. Where’s your potty, Suki?” I chanted in the driveway. For weeks, I took Suki on extra walks so she wouldn’t ‘go’ in the house. I thought we’d agreed to crate-train the puppy, but one morning I brought a breakfast tray up and discovered Suki in the bed, sound asleep, nestled between the pillow and Marika’s chin. The crate sat on the floor, door shut, under a pile of dirty clothes.

When Marika’s friends went back to their colleges after the holiday break, we went off to puppy training classes at PetSmart. We sneaked Suki into the physical therapy sessions and the local hospital for the Monday morning blood draws. The nurses in the Hematology Lab fussed over them both, bringing doggie treats and cans of soda. The undercover slinking about with Suki was nerve-wracking for me but such a thrill to Marika that I allowed it to continue for months. Until the day we got busted. Suki was too big to fit in her travel bag by the time some hospital staff reported us.

Suki seemed to be the lifesaver we needed. Back at the house, we couldn’t help but laugh as Suki climbed to the tops of couches, to the shoulders of anyone sitting on the couches, and to Marika’s bed where she rested happily among the stuffed animals. And one day while Marika slept, leaving me to dog-sit, Suki and the cat cornered a mouse. When the mouse darted toward her, Suki gave a surprised squeak, caught it, and threw it high into the air. The cat and I watched in awe as the mouse fell down in the middle of us, dead. I tried hard not to love this adorable dog that was to, one day, leave home for good with Marika.