Tag Archives: young cancer

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.