Tag Archives: young cancer

Duetting: Memoir 19

Duetting: Memoir 19 Robin Botie of Ithaca, New York Photoshops a duet of her words and the writings of her daughter who died of cancer.

It was all distractions. Diversions. Detoured from our former daily missions, we’d do anything to pass time so we could just go home again, live our real lives, and be normal.

I discovered I liked being a caregiver. I also learned that my toughest challenges always seemed to involve the invisible. Like germs. Fungi, bacteria, and viruses surrounded us. My days revolved around avoiding them. Water bottles and food older than a day were thrown out. It was comforting to wash my hands in very hot water, humming the Happy Birthday song twice, the recommended amount of time to eliminate germs. And I loved “Purelling,” using hand sanitizer, forty times a day. But despite my phobic efforts, Marika was always being plagued by something I couldn’t see. Like abnormal blood counts. We waited every morning for the daily report. If the numbers were right, she could leave the room with a mask on, eat an apple, visit nurses on other units, maybe even go home. I couldn’t see it in her face or her demeanor. She could be feeling terrific but if the counts weren’t where they should be, we weren’t going anywhere.

And I, myself, was invisible. Afraid of being told to go, either by Marika or her doctors, I made myself small. I was the fairy facilitator, barely noticed until clean clothes, food, or a hand to squeeze during a shot was needed. Much of the time Marika pretended I was not there. But I knew that she knew I would always be there for her. The hard part was my invisibility when dealing with the rest of the world. Like her father. I’d report to him daily after the morning rounds, and immediately when there was trouble. But he’d call the nurses and doctors anyway, so I felt overlooked. Invisible. And Laurie. She emailed online newsletters to keep family and friends posted so they could support Marika.

“Laur, what about me? You report the news like you’re the one stuck here in the trenches getting all the information yourself. There’s never any mention of me or my efforts,” I cried, like a jealous four-year-old with a new baby in the family. The doctors stopped addressing me. The nurses, many only a few years older than Marika, were devoted to her and visited often. From my lonely corner by the recycling buckets and hazardous waste containers, I peeked at the company that came and went. “I’m her mother,” I wanted to scream. “She wouldn’t be here if it weren’t for me.” No, she wouldn’t be here if it weren’t for cancer, I corrected myself. And in my heart I was grateful for the attention Marika got. I might be small and insignificant, but not to her.
“Mom, can you get me some Pacifica Brazilian Mango perfume at Wegmans?” she pleaded, with a silly pout. Then I was practically skipping out the door.

July. August. There was so much hope. We charged up and down the hallways dragging the IV stand by its cord, taking turns pushing the wheelchair, both of us wearing masks to ward off germs. Wending our way around meal carts, we dared the despicable germs to try to catch us. Marika had already recovered from major episodes of seizures, pneumonia, septic shock, and respiratory failure. Twice she’d emerged smiling victoriously from complete life support in the ICU. She was a star, on life number three, and we couldn’t imagine that she wouldn’t always be able to produce a miracle. Stunned and proud, and tethered behind like a small dumb dinghy, I sailed, always in her wake.

The gall bladder surgery took three hours. I sat alone in the hallway chewing my cuticles until it was over. There were complications. She came through but would need more recovery time. This would set back the final chemo treatment and thereby create a major timing crisis. The chemo required two weeks of careful monitoring as her cell counts were put into crash mode. But freshman orientation was coming up fast.

“She can’t miss orientation,” Laurie pleaded over the phone, “That’s when students learn how to make college work for them and how to go about screwing it up. Lifetime friendships are formed during that first week. It’s critically important.” I remembered my own college orientation, the excitement of beginning the new adventure that was mine alone, not my family’s. That was what I wanted for my daughter. But I kept quiet and let her work with Laurie to devise a plan the doctors would accept.

Early on a crisp morning at the end of August I drove Marika from home to Clark University in Worcester, Massachusetts. I helped her unpack. Laurie joined us, elated that Marika was finally going to live close by. It was a magical day, sunny and warm, full of excited students and other apprehensive parents.

“Do you believe we made it?” I said, over and over, drunk with happiness as we inspected the dorm, its bathrooms and community spaces. Laurie and I followed Marika to the registrar, the computer center, the dining hall, and finally the health center where we made sure they were well aware of what Laurie affectionately termed “the little time bomb” they now had in their midst.

I cried all the way back to Ithaca. Our scrimmage with cancer was over. It had ended well. Marika would get her college orientation and the first week of classes, I reminded myself. She would stay with Laurie in a hotel between the school and the medical center during the riskiest days. And in two weeks she’d return home, briefly, for her third round of chemo at Strong. I would go with her to Rochester until her counts allowed her to recoup at home. And then she’d be off to the university again. It was a good plan; everyone was satisfied.

So she’d been launched. Her new life was beginning. Marika belonged to Massachusetts and Clark University now, six hours from home. She belonged to Laurie. She belonged to the Greater World at last.

Mission accomplished.

There was plenty to worry about.

 

 

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 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 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 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.