The Keeping of Cancer

By: Mary Taylor Mann, Ph.D. Student at Emory University

In September 2014, Cassandra C. was diagnosed with Hodgkin’s lymphoma. In re Cassandra C., 316 Conn. 476, 112 A.3d 158 (2015). For the next two months, multiple pediatric and oncology specialists urged Cassandra and her mother to begin chemotherapy treatment for Cassandra’s cancer. All physicians agreed that, with immediate treatment, Cassandra would have a high likelihood of cure. Without treatment, however, the cancer would inevitably lead to Cassandra’s death. Cassandra and her mother were skeptical of the effectiveness of chemotherapy treatments and feared the anticipated harmful side effects of long-term cancer treatments. Cassandra wanted to explore alternative therapy treatments. She did research and learned of other Hodgkin’s lymphoma patients who were successfully treating their cancer with natural therapies.

As Cassandra continued to miss appointments and delay treatment, her physicians became concerned for her health and likelihood of recovery. One of Cassandra’s physicians reported his concerns to the Connecticut Department of Children and Families, and the department commissioner filed a petition for neglect seeking temporary custody of Cassandra. Temporary custody was granted and Cassandra was placed in foster care. At the hearing for the commissioner’s petition, the trial court sustained the order of temporary custody, but allowed Cassandra to return home on the condition that she comply with all recommended medical treatment. Cassandra immediately began chemotherapy treatment. Cassandra completed two days of chemotherapy treatment and ran away from home. When she eventually returned home, she was brought to the hospital for medical evaluation. She continued to refuse any further chemotherapy treatments. The commissioner filed a motion to reargue and for reconsideration and requested that a hearing be held to determine Cassandra’s capacity to make her own medical decisions. In December 2014, the trial court concluded that neither Cassandra nor her mother were competent to make decisions concerning Cassandra’s care, and the court ordered that the department maintain custody of Cassandra and direct her medical care. Cassandra was taken from her home and confined in the Connecticut Children’s Medical Center where she received chemotherapy.

Cassandra and her mother appealed the trial court’s decision, and the appeal was transferred the Connecticut Supreme Court. In January 2015, the Supreme Court affirmed the trial court’s decision, concluding that the trial court did not err in finding that Cassandra was not a mature minor capable of refusing medical treatment. Cassandra remained at Connecticut Children’s Medical Center and continued to receive chemotherapy treatment. She completed her treatments in April 2015 and was released from the hospital.

            The following story is a fictional interpretation of Cassandra’s story.

***

“I need to talk to you about a patient.”

The phrase thudded across my forehead like a hammer. I looked up from my locker. My resident, Dr. Hayes, was leaning against the doorframe. Early morning light forced its way through the gray window blinds, casting a blue haze across the tile floor. I stood up, folding my stethoscope into the pocket of my white polyester coat. Dr. Hayes yawned.

“About Henry?” I asked. Henry was the eight-year-old who died of leukemia last Friday, the second day of my pediatrics clerkship at Children’s Medical Center.

“Were you here all night?” Dr. Hayes asked, covering his mouth to yawn again. I shook my head.

“No, I got here at 5:00 this morning,” I said.

“Pre-rounds?” he asked. I nodded, following him out into the quiet hall. The oncology ward was nearly empty. Christmas lights dangled from the counter of the nurses’ station, lazily blinking red and green.

“Is everything alright?” I asked. He nodded.

“Coffee,” he said. Dr. Hayes normally only spoke in single-word sentences on the mornings following late nights on-call. I followed him to the small café in the lobby and sipped hot tea while he guzzled two cappuccinos.

“No coffee?” he asked.

“I have a caffeine sensitivity,” I said. He grunted and shook his head.

“How do you function?” he asked. I looked out the window. It was nearly 7:00. The pink and yellow glow of sunlight was beginning to give way to a dark bundle of clouds.

“So, what’s going on?” I asked again.

“Right,” he said, straightening himself in his chair. “We’re rounding on a new patient today, and she’s a bit complicated.” I frowned. Every patient in pediatric oncology was complicated, but none had ever required a forewarning. “She’ll be under strict supervision at all times, and she’s not allowed to leave the ward.”

“Is she a delinquent?” I asked. During my surgical clerkship, I had been assigned to a man serving 20 years at County who needed an appendectomy. Two armed prison officials guarded his door at all times.

“She’s a neglect case,” Dr. Hayes said. “The Department of Children and Families has custody and their workers will be here most of the time and will need access to her—so, unless she’s coding, don’t get in their way.

“Why is she here?” I asked.

“Court-ordered chemotherapy. She has Hodgkin’s lymphoma.”

***

Cassie Crandall was a seventeen-year-old who had been diagnosed with Hodgkin’s lymphoma in September. From what I could decipher from her fragmented medical records, I knew she had been examined by multiple physicians all over the state, and that she had been reluctant to begin chemotherapy treatment. She also had a bad habit of missing important appointments. Dr. Hayes described a custody battle between the DCF and Cassie’s mother. The DCF won, and Cassie was removed from her home and admitted to Children’s a week ago. She spent a week undergoing physical and psychological evaluations and recovering from the transition. Our care team was to begin chemotherapy treatments that morning.

Dr. Hayes and I met our attending, Dr. Richards, on the oncology ward at 8:00 am. The door to Cassie’s room was closed. A hospital security guard sat on a folding chair to the left of the door. Inside I could see a woman with folded arms speaking in the direction of the hospital bed. Her head snapped in our direction when Dr. Richards knocked on the door, and she retreated to the far corner of the room as we filed through the door.

“Good morning, Cassie, Ms. Andrews,” Dr. Richards said.

“The answer is no,” Cassie said. She was sitting straight up in the bed with her legs crossed, her hands folded in her lap. She tossed her dark curly hair over her shoulder.

“We discussed the treatment plan earlier this morning,” Ms. Andrews said. She held a legal pad in her arms.

“We didn’t discuss anything,” Cassie hissed. “Discussion implies discourse, equal parts of exchange and input between people. You explained the treatment plan. We didn’t discuss anything.” She rolled her shoulders back and lifted her chin to look at Dr. Richards.

“We’ve decided to begin the first of your chemotherapy treatments today. We think you’ve had enough time to get acclimated to your new setting, and we’re satisfied with your psychological evaluations,” Dr. Richards said. Cassie rolled her eyes.

“Why do you people keep insisting that this whole nightmare is a collective effort?” she demanded. “We haven’t done anything. You are doing this to me. I’m not implicated in any of these decisions or plans.” Her eyes narrowed and she appeared to grow taller and taller with each word, as though she was swelling with her own conviction.

“Cassie, I understand that your situation is a very difficult one,” Dr. Richards began.

“No you don’t,” Cassie said. Her retorts were quick and sharp. “You can’t understand. Both your profession and the law are telling you to do this to me. Every relevant institution agrees with you. What you understand is that you are ultimately right, which means there is no way you can understand my situation.”

“You need this treatment, Cassie. I wish I could make you see that,” Dr. Richards said. He had clearly expressed the same sentiment to Cassie before. His expression was blank and dejected.

“You don’t have to try to make me understand anything. You don’t have to try to sympathize with my perspective,” Cassie said.

“You have an 80 percent chance of cure with this treatment,” Dr. Richards said.

“You don’t have to convince me, Dr. Richards. You don’t have to care. You only have to push the drugs,” she said.

“Cassie, we are trying to help you. We are trying to help you get better,” Ms. Andrews said. Cassie just blinked, unable to form a response to the hollow declaration of alliance. Ms. Andrews could protest, but Cassie was right. No one needed to obtain her consent. No one needed to ask for her opinion. She had no control over what would happen to her body or how sick she would feel.

“Cassie, this is Dr. Hayes,” Dr. Richards said. Dr. Hayes stepped forward and smiled.

“I’m going to be overseeing your chemotherapy treatments,” Dr. Hayes said. “This is Margo. She’s a fourth year medical student who will be assisting me with your care.” I stepped forward and smiled. I immediate despised the smile. It tugged unnaturally at my ears. I was miming the falseness in the room, rehearsing the same exhausted gestures of sympathy and understanding. I knew Cassie could see straight through me.

In the moments following our introduction, I learned that Ms. Andrews was Cassie’s caseworker. She was responsible for ensuring that Cassie stayed in the hospital and received the mandated treatment. Visitors and excursion beyond the pediatric ward were prohibited. Cassie’s wasn’t allowed to see her mom. Security personnel were posted outside her room at all times. With the exception of a daily lunch hour, Ms. Andrews never left Cassie’s side.

***

I completed morning rounds and returned to Cassie’s room to assist Dr. Hayes with Cassie’s first procedure. Cassie needed a Port-a-Cath, which is a plastic or metal device surgically implanted into the chest to allow physicians to more easily and consistently administer chemotherapy regimens. The same security guard was posted outside Cassie’s room, but Ms. Andrews was gone. Cassie was reading a light blue hardcover, the dust jacket deflated on the metal bed tray. She clapped the book shut when we entered the room.

“I don’t want to do this,” she said. Her eyes were large and she held the book close to her chest. As Dr. Hayes explained the procedure, three nurses filed into the room, and Cassie’s eyes grew wider and wider. She stiffened and squared her shoulders at Dr. Hayes as he approached her bedside.

“We’re just going to transport you to one of the procedure rooms,” Dr. Hayes said gently.

“No!” Cassie said, and she threw the book at Dr. Hayes’s head. He dove to avoid the projectile, and the room erupted into chaos. Cassie began to climb out of her bed, and the nurses sprang upon her, wrestling the Velcro restraints from beneath the mattress, “Let go of me!”

“Shut the door,” Dr. Hayes said to me. He was hunched over the metal rolling cart, preparing a syringe. I closed the door and Cassie started screaming.

“I don’t want the treatment!” she wailed. “Why are you doing this to me? Stop it! Stop it!” She was beating her arms and legs against the mattress and rolling to avoid the nurses’ grasps. One of the nurses yelled for my help. We each restrained a limb with a Velcro cuff. Cassie’s ankle thrashed against my grip.

“I don’t want the treatment! Stop! Help! Help!” she screamed. She yanked furiously against the restraints and rammed her head against her pillow. I retreated from the bed as soon as I secured her ankle. Two nurses were holding her by the shoulders, and one was whispering in her ear.

“It’s alright. It’s alright, sweetheart. It’s almost over,” the nurse said. Cassie was sobbing, choking on her screams. As she thrashed about, she bit her lip, and blood poured from her mouth, staining the front of her gown. Dr. Hayes muscled his way through the tangle of people and took hold of Cassie’s arm.

“I don’t want this! I don’t want this!” she yelled, spitting blood. Dr. Hayes’s jaw was clenched and his face was red. He reached out his hand to me, and I handed him the syringe. Within seconds, Cassie was still and quiet.

***

Two weeks passed. The first cycle of treatment began and ended.  Cassie withered. The chemotherapy left her pale and exhausted. The circles beneath her eyes grew and darkened, and the skin on her chest around the site of the port turned blue with bruising. Her back ached from vomiting. She cowered in her bed, sloped precariously on her side. Her shoulders slid forward and her chin dipped towards her chest. Her dark hair grew dry and frayed, and clumps of it began to collect on her pillow.

I knocked and entered the quiet room. Ms. Andrews sat in the corner with a needlepoint pattern. She forced a smile in my direction.

“Cassie?” I said. She stirred and gripped the bed rail to steady herself as she sat up to face me. I smiled the warmest smile I could muster. “Good morning,” I said. She blinked and her face fell. My eyes followed her gaze. Her wrists were covered in bruises, evidence of last week’s trauma. She prodded at the bruising on her chest.

“That should heal up soon,” I said motioning to the port. “It shouldn’t be sore for much longer.” I pulled my stethoscope out of my pocket. “I’m just going to take a listen.” Cassie winced. I’m sorry,” I said. Cassie slumped back against her pillows.

“Why did you take away my cell phone?” she asked. I frowned. I didn’t remember seeing a cell phone.

“I’m sorry. I didn’t know you had a cell phone. I can ask the–” I said.

“Margo didn’t take your phone, Cassie,” Ms. Andrews said.

“Why did you take it?” Cassie asked, glaring at Ms. Andrews.

“It’s the rules,” Ms. Andrews said.

“The hospital doesn’t have a cell phone policy,” I said.

“The rules have nothing to do with hospital policy,” Ms. Andrews said, and she returned to her needlepoint. Cassie closed her eyes.

***

At lunch I found Ms. Andrews in the cafeteria. She smiled at me as I slid onto the bench across from her.

“You’re from the Department of Children and Families, right?” I asked.

“Yes,” she said.

“I was just wondering if there was a way to get Cassie’s mind off of the chemo. She’s pretty unhappy and the drugs are hell, so I was wondering if you had any strategies,” I said.

“Strategies?” Ms. Andrews asked.

“You took away her phone,” I said. Ms. Andrews rolled her eyes. “I’m not going to ask questions. I’m just observing. She’s not allowed to leave her room. She rarely sees any visitors. I just don’t understand why she’s not allowed to have contact with the outside world.”

“Cassie and her mother are appealing,” Ms. Andrews said.

“That’s fine. You know more about the legal logistics than I do, but I’m training to be a pediatric oncologist. If I know anything by now, it’s that kids need a support system when they go through treatment,” I said.

“Cassie has an excellent care team and counselors and the department to support her. She doesn’t need her phone,” she said. The lie lingered in the space between our faces. I looked down at my chicken salad.

“Maleficent,” I said. Ms. Andrews squinted. “That’s what she calls you when you’re not around. And last week, I helped three nurses stuff her arms and legs into restraints and sedate her. We’re the villains, Ms. Andrews. We’re not a support system.”

***

The day after Christmas, Cassie was gifted an iPad with restricted access to the hospital Wi-Fi. When my shift resumed the following Monday, I slipped a piece of paper with the adjunct faculty network login information into Cassie’s hand as I checked her vitals.

“This is completely against hospital policy,” I whispered. She shook her head in disbelief.

“I’m only going on Facebook. I promise,” she said.

“Fine,” I said. “But I’m on call tonight, which means I’m missing the Golden Globes. I want to know if Modern Family wins anything. Keep me updated.” She smiled and nodded, tucking the slip of paper into the pocket of her sweatshirt.

When I returned that evening, Cassie was out of bed, seated in the room’s armchair, chatting with her best friend, Sara. Cassie and Sara hadn’t been able to communicate since Cassie was admitted to the hospital in November. Cassie’s bursts of laughter were a welcome disruption of the stillness of the ward’s atmosphere.

***

In January, Cassie and her mother lost their appeal, and Cassie was ordered to stay at Children’s until she completed her treatments. She began her second cycle of chemotherapy a week later. Ms. Andrews was out sick the day Cassie was scheduled to begin, so I was placed in charge of administering and supervising the chemo. Cassie sat with her iPad in her lap and a stack of magazines on deck at the foot of the bed. I was completing discharge papers from Dr. Hayes’s on-call stack. Cassie leaned back and shut her eyes.

“How are you feeling?” I asked. “Are you nauseated?”

“No,” she said, sighing. “I just get worried.”

“Anticipation?” I asked. Many cancer patients suffered severe anxiety from anticipating the treatment side effects. Cassie nodded.

“The court therapist taught me this technique to help with my panic attacks,” she said.

“Court therapist?” I asked.

“The court-ordered therapy,” she explained. “Her name is Bethany. She comes every Monday and Thursday. Twice a week for five weeks, and once a week every subsequent week with noted improvement,” she said.

“Yes, of course, I met her. I just didn’t realize she was here for legal reasons,” I said. I remembered the tall woman with the dark hair. She smelled of cigarettes and coffee, and her black leather pumps slapped along the ward’s tile floor on the mornings she visited.

“One of the judges who heard my appeal was concerned for my sanity, so they threw in court-ordered therapy to compliment the court-ordered chemo. It’s a much more holistic approach, I suppose,” she said. She scratched at the port in her chest. I flinched.

“Cassie, don’t—don’t mess with it,” I said. She looked up. She could see the alarm in my face, and she frowned.

“I’m not going to take it out,” she muttered.

“I’m sorry. I overreacted. I know it itches,” I said. I tried to smile, but her eyes had dimmed and she was staring at the magazine in her lap. She was thinking about the chemo, about the impending nausea. I had reminded her. I had drawn her attention back to the small plastic disk implanted just below her clavicle.

“How do you like Bethany?” I asked.

“She’s nice enough. She’s better than Maleficent, anyways. We’ve kind of run out of things to talk about,” she said.

“I think she sort of smells bad,” I said. Cassie’s laugh leapt forth in a single burst, and she clapped her hands against her mouth.

“You can’t say that about a colleague!” she said, struggling to suppress her laughter.

“She’s not employed by the hospital. She works for the state,” I said, smiling. Cassie raised an eyebrow.

“You’re right. She stinks,” she said, laughing. “Gosh, I’ve been thinking that the whole time, but I couldn’t tell anyone. It’s awful.”

“I wonder if she takes her smoke break right before your appointments, or if she’s just constantly engulfed in a putrid cloud,” I said.

“No, I don’t think it’s the smoking. It’s a different smell,” she said.

“Maybe it’s a combination of things,” I offered.

“You know how chocolate leaves that horrible sour taste in your mouth ten minutes after you eat it?” she asked. I nodded. “Bethany smells like that taste.”

“Maybe she doesn’t brush her teeth,” I said, laughing. Cassie’s eyes widened.

“One time she showed up to a session with spinach in her teeth, and it was a big piece wedged right in the front. And I never said anything. I just stared at that hunk of spinach for the entire session,” she said. We both laughed. “Oh gosh,” Cassie said. “This is terrible.”

“I know,” I said, grinning. “But I had to say something.” Cassie scratched again at her chemo port.

“Anyway,” she said. “She makes me do this thing called grounding. Whenever I feel panicked, she says I’m supposed to look around the room and find five things I can see, four things I can touch, three things I can hear, two things I can smell, and one thing I can taste.” She counted the items on her fingers.

“It’s meant to help you get back in touch with your space and your reality if you start to feel out of control,” I said. She nodded.

“The problem,” she began, “is that, whenever I start to panic, I’m in this room. I’ve started to run out of items to identify. Everything looks the same, feels the same, sounds the same, smells the same, and tastes the same. There’s no difference, no unique features to throw off the spiraling. There’s nothing to notice.”

***

My shift ended that evening at 8:00, and I drove to a crafts store. A man clad in argyle was the locking the doors as I reached the sidewalk entrance. I smiled and pleaded, tugging my white coat around my shoulders as a gust of January wind threatened my scrubs. He unlocked the door.

“I’ll only be a moment,” I said, rushing to the back of the store. I bought several yards of blue fleece, a bouquet of fake sunflowers and daisies, and blue and white construction paper. I spent half the night fashioning the fleece into a blanket, cutting several dozen paper snowflakes, and arranging the flowers in a vase.

***

In the morning after pre-rounds, I followed the on-call nurse into Cassie’s room during breakfast. I placed my basket of decorations on a rolling stool.

“You’re here early,” Cassie said, yawning. I began pasting the paper snowflakes to the window and walls.

“What are you doing?” Cassie asked?

“Just eat your breakfast and don’t worry about it,” I said.

Satisfied with the distribution of snowflakes, I spread the blanket across the foot of Cassie’s bed and set the flowers on the bedside table.

“Are those fake?” she asked, pointing to the flowers. I nodded.

“Hospital rules,” I said, shrugging.

“What is all this?” she asked.

“Three new things,” I said.

“Three new things?”

“Three new things for you to notice,” I said. Cassie looked around the room.

“For grounding,” she muttered. I nodded.

“It’s not much,” I said. “I thought I could try to update things, you know, with seasonal themes.” Cassie reached for the blanket.

“Did you make this?” she asked. I nodded. “Thank you,” she said. I busied myself with the chart, checking the nurses’ notes from the night before. I bent forward to listen to Cassie’s heart. Her eyes were slowly circling the room.

“You OK?” I asked. She looked at me and nodded.

“I don’t,” she began. “I don’t want this to become my reality.” I pulled the stethoscope from my ears and sat down on the edge of the bed. I squeezed her hand.

“I know.”

***

My clerkship at Children’s was drawing to a close. My last day on the ward was a Friday. Cassie had been in the hospital for exactly two months. The DCF finally agreed to permit Cassie’s mom to visit the hospital once a week. My shift ended at 10:00pm, and I made my way up from the locker rooms to the oncology ward. The hallway was quiet, and the lights in Cassie’s room were dark. The security guard nodded at me as I slowly opened the door. The walls and windows of the room were decorated with paper hearts in anticipation of Valentine’s Day. Cassie was asleep. We had already said our goodbyes that afternoon. I tapped her shoulder, and she stirred and squinted at me.

“Cassie,” I said. “I’m heading home.” She nodded and closed her eyes.

“Goodnight,” she mumbled.

“I just wanted to say how much you’ve impressed me,” I said. “You’ve been so strong and so courageous.” She smiled against her pillow. “Cassie, what happened—what we did to you—it wasn’t right. It was wrong.” I pulled the rolling stool towards me and sat down. Cassie opened her eyes and dragged herself to a sitting position. “I was wrong,” I said. “What I did was wrong, and I’m sorry.”

“I never wanted any of this to happen,” Cassie said.

“I know,” I said. “I know you didn’t. But none of this is your fault. I’m sorry that this is happening to you. I’m sorry that I’ve been a part of it and that I helped it happen.” Cassie looked down at our hands and nodded slowly. “I never wanted to be the villain. But I was, and I’m sorry,” I said.

“No one else has apologized. Nobody,” she said.

“You said it first: no one believes they’ve done anything wrong,” I reminded her. I looked out the window. Outside the blue and red lights of the Heli-Vac were touching down on the roof of the General Hospital across the street. “I still don’t know what the right thing would have been. I’ve thought about it, but I just don’t know,” I said. Cassie smiled.

“Sometimes I’m not so sure, either,” she said. I returned her smile and squeezed her hand.

“I should go,” I said. “Sleep well.” I rose from the stool and headed for the door.

“You forgot something,” she said. I turned around. “Villains don’t apologize.”

 

Mary Taylor Mann is a graduate student at Emory University pursuing a Ph.D. in English. Her current areas of interest include 18th and 19th century British literature; literature of the Romantic period, specifically the work of John Keats; bioethics and health humanities; and the intersection of literature and medicine in literary scholarship and medical education and practice. She received her master’s degree in bioethics from Wake Forest University in 2016, and her work concentrated in the areas of narrative medicine and narrative ethics, illness narratives, literary representations of illness, feminist bioethics, and women’s health and social justice.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s