Tag Archives: cancer journey

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.

 

 

 

 

 

 

REPLY TO ROBIN

Duetting: Memoir 11

Duetting: Memoir 11 Robin Botie of Ithaca, New York, photoshops words of her daughter Marika Warden who died of leukemia.

Before leukemia, home was the place we came back to long enough to grab what we needed, whether it was a nap, a meal or a gym bag, as we rushed out again down the hill and back into the world. We rushed and everyone around us rushed. We rushed to get our homework done, to get to school on time, to go to soccer practice or to the mall to pick up some last-minute sports tape, and a fast smoothie to tide us over. As a new special education teacher, I pushed to get through paperwork that piled up too quickly, while Marika scurried between schoolwork and part-time jobs at her favorite sushi restaurant and the gym’s daycare center. There was never enough time. Maybe we liked to eat out so much because it forced us to sit still while we waited for our food.

We were foodies. She baked. I cooked when I didn’t have too much homework from my SUNY Cortland classes. I danced in the kitchen to the muffled sounds of Marika’s music. Indie rock. Upstairs in her room, where she thought no one could hear, she sang over pre-recorded instrumentals. And in the car, stuffed with singing girls, the joyful un-muffled voices made me smile as we sped off to soccer games in neighboring counties.

On the soccer field Marika was an aggressive tank, stopping at nothing to get at the ball. I winced whenever she headed it, and cringed every time she barged into another player. Marika was fierce; she was fearless. So of course she was going to fight leukemia. Early on, a friend set her up with a blogsite, Marika Kicks Leukemia. Though she lived in a dense fog the first few weeks of cancer, Marika was set for battle. She would fight her disease, her doctors, me, and anything else that kept her from living her life the way she saw it.

Life, the way I saw it, should be beautiful and function flawlessly. I always believed I could design my way into or out of anything. For me, to design is to control. It is ongoing, like breathing. Each day, before the sun rises, I envision every possible scenario so nothing can hit me by surprise. To put the most harrowing things in manageable perspective, I draw and make endless lists. There’s always a ‘Plan B’ as I bolster myself for the worst.
“I’m not worrying, I’m designing,” I insist, when accused of being anxious. And designing always started at home even though I hated being alone at home, and Marika would rather be anywhere else. But by the end of May 2008, home was where we both yearned to be.

“When can I go home?” she asked countless times as teams of doctors filed in and out of her hospital room. First this had to happen and then that—there were obstacles. It was like Monopoly, one of those endless board games we always gave up on before we could finish. We were only at the beginning of our road trip. And my mind was already racing, working overtime to find “beautiful” and “flawless,” to put them back into our lives wherever we might land. But leukemia had wormed its way into the warp and woof of our world. Cancer hit home. The tides were broken. They’d collided. Soon I, too, could not “ride along to the same rhythm anymore,” as Marika said. We were hanging over the dark craggy cliff of the gorge when Marika nearly died two times in her first three weeks of cancer.

There was no way to design my way out of that.

 

 

 

REPLY TO ROBIN

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.”

 

 

 

 

 

REPLY TO ROBIN

Welcome to Cancer

Robin Botie of Ithaca, New York, in homage to Cindy Sherman, and inspired by a friend newly diagnosed with cancer, photoshops cancer as a cranky old aunt.Dear J.,

For days, in response to your request for cheerful cards, I’ve been wondering what I could possibly say to “cheer you up” as you embark on your affair with cancer. I call what happens after a diagnosis an ‘affair,’ even though most people call it a ‘journey,’ one’s ‘cancer journey.’ People typically fall or jump into an affair, while journeys are usually anticipated and planned for. Instead, you got swiftly swept away into strange territory. An unusual and engaging and possibly hazardous experience—that is an affair or possibly an adventure. I’m wishing you luck.

From my own past experience as a caregiver, I compare cancer to having a controlling, cantankerous old aunt move into the house. She disrupts all your routines and plans, demanding your attention constantly. She bullies you. Every time you wake she whacks you. Cancer. It’s a shaking-up, a re-thinking of everything you thought you knew and could depend on. It’s a whole new relationship. It is not a fight. The worst of it — the recovering from surgeries, reactions to treatments, and the times you just want to be knocked unconscious — I call the Wilds of Cancer. That’s when the old aunt goes on a rampage, callously gutting you of kidneys and lungs, tearing your world apart. She whips you. She invades your dreams and re-colors every waking moment. She keeps you humble, keeps you ever on the lookout for a respite, and then gets you dreading her return. But she does quiet down here and there, and that is when you can hear your own breath again, feel your heart still beating. That is when you find your whole world is amazingly rich. Even robbed of your energy and well-being, life appears to be beautiful.

I hope you find ways to make peace with cancer. Don’t take her aggressive advances too personally. So many people are living with cancer. Maybe the “cheering up” is in knowing you are not alone. And in learning you can do this — you can do a slow-dance with cancer. Each new morning is a gift. And she may just loosen her grip and ditch you one day, leaving you wiser and more grateful and more respectful of everything in the universe.

I hereby add my best cheer and encouragement to your community of support.

 

What do you say to a newly diagnosed cancer patient? What can you do to ‘cheer’ them up?

 

REPLY TO ROBIN

Grateful to Nurses

Robin Botie of ithaca, New York, restores a photograph of her daugher with two oncology nurses at Strong Memorial Hospital.“You can have all the ice cream cups you want,” the nurses at the oncology unit told me, back at the beginning of the journey through the wilds of cancer with my daughter. They knew I wasn’t hungry so much as in need of kindness. But even more than kindness, I desperately needed to know Marika was in good hands, that the people around her cared. Over the course of her cancer, hundreds of nurses would come to look into Marika’s eyes, check her vitals, listen as she scored her pain on scales of 1 to 10, and treat her like a princess. And even when I hollered at the nurses, the time they barred me from her room (as per the princess’s request), I was thoroughly grateful for all their caring.

National Nurses Week, an opportunity to honor the hard work and dedication of nurses, is May 6th through 12th. From the bottom of my broken heart I’m sending out my warmest wishes to nurses everywhere. And many thanks, especially, to the ones who carried sweet light into our nightmare.

Cheers to the nurses who showed me the secret shower in the hospital mop closet. To the nurses who let Marika sneak her puppy into the hospital room and brought doggie treats. Thanks to the nurse who gently washed my daughter’s hair as she lay unconscious in the ICU. And to the one who sang to her. Hugs to the two nurses who, when Marika ran out of underpants and I bought her Jockey briefs, used their lunch break to go buy her bikinis and thongs. When Marika had to miss her senior prom, those same nurses decorated an empty room with balloons and crepe paper, added a boom-box with favorite tunes, propped Marika up in bed with prom dress hiding catheters and IV tubes, and invited her boyfriend over for a private prom-night. Nurses brought Marika books and CDs, stuffed animals, an electric keyboard, and restaurant-takeout recommendations. They made her chocolate ice cream milkshakes.

One day I found Marika flushing out her own vein-access port under the careful guidance of an oncology nurse. Beaming with pride, Marika announced, “Mom, I got accepted into the nursing program at University of Technology Sydney.” Inspired by the people who had kept her going with their kindness and skills, Marika had decided to become a nurse herself.

Two weeks after that though, the princess’s situation had changed. Her journey was ending. Nurses from the three units Marika had frequented over the almost-three years of cancer came by in pairs to see her. They silently stood over their princess one last time. There were no words. They left me with hugs. And a feeling of having been taken care of and held in warmest kindness.

 

What is your nurse story?

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