Driving the Camel; Adventures of a Child Life Specialist

Installment #2

Chapter 1: Two for One Sale continued

…..But today it was my turn to be the patient. As I pushed my way through the revolving doors of the very hospital where I had provided solace and healing, it struck me that I was the one in need of these things. Who was going to take care of me, the caretaker?  It was such an odd homecoming, familiar yet strange. The actual building I entered had not even been in existence when I’d worked there. But it held the same smell and the decor was familiar, as were the uniforms of the security guards at the information desk.  

Entering the lobby as a patient, without the authority of an employee ID badge, I felt like a lobster shedding its shell, soft, pink and vulnerable waiting for a new protective coat of armor to form. I had taught children and parents so many coping skills over the years. Would these skills be available to me now, or would terror hijack all of my working synapses and block my access? A rip current of anxiety carried me along a shoreline just out of reach. I could feel my feet scrambling for solid ground.

At the check in desk on the 4th floor, I supplied my birthdate, those eight digits that granted me access to the world of treatment.  Like a POW stating name, rank and serial number, I would repeat those numbers countless times over the coming months. Mark and I found seats on one of the many couches in the waiting room. Although most seats were filled, there was a hush to the large room. Patients and caregivers sat in small groupings, sipping coffee, reading magazines, texting quietly on cell phones. One woman appeared clearly ill, a greyish pallor smudged over protruding cheekbones. Overdressed for the spring weather, she huddled in her scarf and coat, a hat pulled low over her forehead. She tried her best to curl into her chair, her eyes closed in exhaustion. Was that going to be me soon? Others looked no different than me, dressed for work, no outward signs of illness or distress. Mark pulled out his blackberry and zeroed in on work emails. That and his bouncing foot were his only tells.

Soon enough, we sat across a desk from Dr. Fodor, while he drew an anatomical diagram of my breasts upside down, so that we could see it from our seats.

“You have three tiny tumors,” he began. “Two here, and one here. They are what we call “in situ,” Stage One. So first of all, I want to tell you, you are not going to die from this. “

I looked over at Mark and our eyes met in shared relief.

“Now our data shows that there is no difference in outcome between a mastectomy and a lumpectomy for this type of cancer. So we recommend a bilateral lumpectomy along with a sentinel node removal and biopsy, followed by four weeks of radiation. You should be done with this whole business by the end of the summer.”

“Thank God!” I thought. No horrible decision to be made between a mastectomy and a lumpectomy. No chemo. It was mid May, and as a professor I didn’t work summers. This already felt manageable. Dr. Fodor, sporting a bow tie and the lanky build of a basketball player, exuded calm reassurance. This was no big deal. He saw this every day.

“So, what do you think about next week?” he said.

My heart sped up. “Surgery? Next week?”

“Yes, let’s get you on the schedule for next week and get this started. My assistant will give you all of the pre-op information, so that you’ll know what to expect and what you need to do to get ready.”

Mark and I walked out of the doctor’s office an hour later with a schedule for surgery and pre-op appointments. Dr. Fodor had explained that in addition to routine blood work and an EKG, I would need to be injected with radioactive isotopes, scanned, and have seeds placed in both my breasts to localize the tumors and sentinel lymph nodes so that he would know where to cut. It was a lot to take in, but I didn’t have a lot of time to think about it.

The very next day, I boarded a plane to Denver to attend the Child Life Council’s annual conference. 

The CLC is a membership organization for the field of Child Life. It oversees certification, provides support and resources to child life specialists, and runs an annual conference. This year, the Council had awarded me a scholarship for Innovations in Play, and the Disney Corporation would  underwrite my trip. I had two presentations to give, both on the topic of play. In addition to the scholarship, the CLC had recently hired me as the project leader to design and conduct an international survey on the state of play in North American hospitals. My career was beginning to expand beyond the walls of the small college where I taught courses in play and child development for child life specialists and teachers. I was excited and a bit overwhelmed by the tasks that lay ahead. Cancer certainly hadn’t been part of the bargain when I signed up for these opportunities. But there was no turning back now.

I sat on the plane, reviewing my presentation notes and drifting in and out of focus. Thoughts were ricocheting around my head like pachinko balls. The running monologue followed no linear path, and went something like this. “Holy Sh*t! I have cancer! Weird, I don’t feel sick. How the hell am I going to concentrate on presenting to over 200 people? What if I cry? Holy Sh*t! I’m having surgery next week! How big a chunk is Dr. Fodor going to take out of me?  What if Dr. Fodor is wrong? What if these damn tumors metastasize and kill me? Will I be able to go on vacation in August like we planned? How the hell am I going to get all of my work done for the CLC?  Will I be able to meet their deadlines? Is radiation going to hurt? My skin is so sensitive and my mother had such a hard time with radiation. Will it be worse for me?”

My mother had been diagnosed with breast cancer 6 years earlier. She had a tough time with post surgery complications and the radiation had left her scarred and in chronic pain. But thankfully, she was alive and kicking at the age of 80. A great role model for me, Joyce projected an infectious sense of joy and a thirst for learning and growing. I would definitely be relying on her life perspective in the coming months.

Arriving at the hotel, I was greeted by texts from my 2 co-presenters, who were eager to gather to rehearse our presentation. I had never met Loxy before, as she worked with Caitlin at a children’s hospital in Texas. But I knew she was more than a child life assistant and co-worker. She was a dear friend and mother figure to Caitlin, who had moved to Texas knowing no one. Caitlin, with her freckles and strawberry blonde hair, was one of those precious gems in my life, a student who had graduated and turned into a close friend and colleague.

Caitlin and Loxy already knew of my diagnosis, so at least I didn’t have to share the bad news in person.  We all met in Caitlin’s room to prepare materials and run through our talk. As I sought to focus on the task at hand, I felt keenly aware of my shifting identity. I struggled with a sweeping feeling of neediness and dependence. I didn’t want to work on our presentation. I wanted to talk and cry and lean on these people. It ran counterintuitive to the role I had played as Caitlin’s mentor and teacher. I just wanted her to tell me that it was all going to be all right. At the same time, I knew that now wasn’t the time or the place. I did my best to focus and be present, and I succeeded enough to contribute to the rehearsal. But I felt an odd separation from both women, as if I were speaking to them from a great distance.

Back in my hotel room after hours, I was still making phone calls to extended family and friends, informing them of my diagnosis and impending surgery. Each time I said the words out loud, “I have cancer,” and listened to their responses, the cancer became more and more real. I felt on high alert, my attention bouncing between thoughts of my diagnosis and my upcoming presentations. It was only sheer exhaustion that provided me with an escape. One minute I was lying on the crisp hotel sheets imagining my surgery, and the next thing I knew, the phone was ringing with my wakeup call.

I showered and donned my interpretation of a power outfit, a brightly colored Indian cotton tunic and Eileen Fisher linen pants. Taking the elevator to the executive lounge,  I found an empty table in and wrote in my journal as I ate a hearty breakfast. At least the anxiety and cancer weren’t affecting my typically Herculean appetite.

Caitlin and Loxy joined me in the huge ballroom downstairs, and we checked in with the tech people to make sure our power point was set up and ready to go. I was surprised and pleased to find that the adrenaline coursing through my body actually helped me to focus.. As I took the stage with Caitlin and Loxy, I felt galvanized by the energy in the room. I looked out onto a sea of expectant faces, wondering if I would inspire or disappoint. The power point we’d put together was great, but I knew that it was our stories that would connect with the audience, if we could pull away from the technology and tell them as if we owned them. I took a sip of water and hoped it wouldn’t go down the wrong pipe.

Child Life Council Annual Conference presentation

Entitled “Co-Creating Meaning: Loose Parts in the 5th Dimension” our talk told the story of  how child life specialists can assist sick children in making meaning out of their illness and treatment through play with loose parts, found objects in everyday life. The audience was with us every step of the way, as we wove theory in with moving examples of the work Caitlin was doing with children at a large children’s hospital in Texas.  My favorite story was about the ten-year-old brother of a patient who had suffered an aneurism.

Marco, a bright and inquisitive ten-year-old with shortly cropped black hair, spent days on end in the hospital’s playroom, waiting for his brother to “get better.” Several weeks prior, he was asleep in the room he shared with his older brother when he awoke to sounds of gasping and gurgling. Fifteen-year-old Oliver had suffered a ruptured brain aneurysm.

For the first weeks of Oliver’s hospitalization, Marco displayed little interest in learning about his brother’s medical condition. One afternoon, however, the somber boy approached Caitlin and stated that he was ready to learn about what had happened that night. After explaining Oliver’s illness using analogies and drawings, she asked Marco what he would think about building a model of a brain aneurysm. The boy expressed enthusiasm, and together they gathered materials for the project, and placed them on a table.  

Marco stated that the first task was to create a brain. Per his suggestion, they proceeded to coil snakes a white clay atop a Styrofoam bowl. He selected a long piece of catheter tubing to serve as a vein, and draped it over the brain. Next, they discussed various options for creating the thin wall of the vein, where the aneurysm had occurred. Marco snipped off a small portion of a rubber glove, which he secured between two pieces of catheter tubing. He mixed red paint with water to serve as the blood. Using a syringe, Marco pushed the blood through the vein. When the blood reached the clamped portion of the tubing, the rubber segment ballooned out, representing the aneurysm. He continued to push fluid through the tubing, eventually causing the rubber portion to burst and bleed out onto the brain. As the balloon burst, Marco exclaimed, “That exactly what happened to my brother! That’s why he can’t talk anymore! I want to go show my mom.”  A boy who had barely spoken for weeks was now smiling and laughing as he recreated and burst the aneurysm again and again.

In the end, the audience applauded  loudly, and relief and gratitude swept over me.  My solo presentation the next day also went well. I felt strong, capable, and in the moment while on stage. But as I stepped off the stage and my adrenaline stopped surging, my attention shifted back to my predicament, and anxiety moved in for an extended visit. Even though I attended other conference workshops, I found it all but impossible to concentrate on the presentations.   This unnerving feeling accompanied me home on the plane.

I lay awake at home that night, anxiety rippling through my body.  I thought about my predicament, compared with what I’d seen children go through over the years. I thought about Marco, the little boy who’d made the brain model with Caitlin. I wondered if I would be able to make meaning out of my own cancer experience as Marco had. There were so many unknowns. But one thing felt clear to me. I was not going to go through this alone.

I didn’t have it in me to be a stoic. I had no problem with being the bus driver of my treatment, but there was no way I was going to be the only one on the bus. Besides family and friends, I knew that I could count on my colleagues. What I didn’t know at the time was how, as the word spread about my illness, past students would step up and offer support. It’s a good thing too, because absolutely nothing about my treatment went as planned. I ended up needing every ounce of support offered.