Driving the Camel: Adventures of a Child Life Specialist

Driving the Camel: Installment #4

~ debvilasconsult ~ 13 Comments

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Chapter 3: Secret Weapons

Not only did I have a year to focus on my treatment and recovery. I also had a secret weapon: Child Life. I learned from the chemo snafu never to go to a doctor’s appointment alone. When Mark or a close friend or family member couldn’t go with me, child life colleagues and past students took turns accompanying me to appointments and treatments, making a mini party out of each and every chemo session. They brought treats, read aloud to me from trashy magazines and made me laugh so loud once that the nurse came to close our door so we wouldn’t disturb the other patients. And that was just the beginning of a landslide of help and cheer.

Each person performed a simple task or favor that woven together, formed an army of support. From walking to my dog, to teaching my course, offering to design a tattoo to beautify my scars and performing Reiki on me, their generosity knew no bounds. The regional group of child life directors organized the drop off of a slew of coping and comfort items, queasy pops, distraction toys to use during IV’s and blood draws, journals, chocolate, gag gifts, warm socks, and cute hats.  

One friend’s actions were perhaps the most far reaching of all.  Sydney, with her non-stop energy and raucous laugh.  She blew me away when she organized Team Deb to walk in the American Cancer Society’s Breast Cancer Awareness walk, raising over $4,000 in my name. She sent every supporter a t-shirt that read “Team Deb”. Along with the shirt, everyone received a ridiculous Deb head on a tongue depressor, a disembodied photo of my smiling face. Those who couldn’t make the walk posted photos of themselves on Facebook wearing the shirt and holding the Deb head. Sydney showed up on the day of the walk with her whole family in tow. She jumped atop a park bench waving Deb head’s to help gather Team Deb amidst the throng of thousands. That sight is one I will cherish for years to come.

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I wasn’t the only one in my circle to face the cancer battle. My colleague, Annie, experienced a double whammy. Two weeks after I shared my bad news, her sister was diagnosed with stage III breast cancer and had to endure a double mastectomy and heavy-duty chemo. Annie brought us together and we became chemo buddies, cheering one another on throughout the process. When Annie showed her sisterly support by shaving her head, they invited me to the shaving ceremony via video chat. I was moved to tears watching their husbands reverently shaving the heads of their wives. I had to turn away from my computer camera for a moment so they wouldn’t see me cry.

On my first day of chemo, I received a package in the mail: a life-sized cardboard replica of my favorite actor from Lori, a child life specialist and young mother in Colorado.  I piggybacked on that idea and sent Annie’s sister a life-sized replica of  Dwayne Johnson, or “The Rock”, his ring name as a professional wrestler and her favorite actor of all time. 

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Continue reading →

Driving the Camel: Installment #3

~ debvilasconsult ~ 4 Comments

 

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Chapter 2: Plot Twists

I did my best to spread out appointments and procedures between the members of my support system. I didn’t want any one person to feel burdened, especially Mark. He would have enough on his plate taking care of me at home. My friend Sharon accompanied me to my pre-surgery checkup, and my sister-in-law brought me to get the radioactive isotopes injected.

As part of my own self care regimen,  I took selfies of me with each person to accompany me. I snapped photos of the intimidating machine they used to guide the placement of the radioactive seeds and the nuclear scanner I rode like a carnival ride following the isotope injection.  I wanted to document my progress and witness my own milestones of treatment. No matter how much support I had from friends and family in waiting rooms, I faced the painful procedures alone in a skimpy hospital gown.

There comes a time when every cancer patient is stripped of their own clothes and identity. We may be in the presence of medical professionals, but we are profoundly alone. In those moments, we must rely on ourselves and our own coping skills, which can take the form of tears, desperate prayers or stoically enduring the pain and humiliation. If we are lucky, we have access to other more concrete coping techniques.

As a child life specialist, I had helped children and families document their treatment through photos and homemade books.  Children illustrated their stories and dictated their own narratives. I  prepared many children for painful procedures, and provided distraction and comfort to them while they faced injections, spinal taps, bone marrow aspirations, sutures and the setting of broken bones.  With their parents’ help, we practiced how to blow bubbles to relax, how to make choices about where to look during the painful part, and what toys or books might take their minds off  their pain and fear. I used guided imagery to help them imagine themselves on a beach or at an amusement park, instead of on a cold, hard, bed in an emergency room. 

I remember 10 year-old Nikki well. An ambulance transported her from school, where she had seriously injured her right arm. She arrived at the pediatric emergency room  on a stretcher, her arm heavily bandaged. She was surprisingly calm, and I wondered if perhaps she was in shock. Her parents had not arrived yet, and the doctors couldn’t wait for them. They moved her onto a hospital gurney. I stood on the other side of the bed, close enough to speak quietly as the doctors bustled around her.

“Hi Nikki. I’m Debbie. Do you know where you are?”

“The hospital?”

“Right, the ambulance just brought you in from school. The doctors need to look at your arm to see how to help you feel better. Do you want to tell me a little bit about what happened?”

Nikki looked a little abashed. “I was joking around with my friends in the girl’s bathroom. I climbed up the wall of the stall to tease one of them in the next stall. I don’t know what happened, but I fell. My arm got cut somehow on the toilet paper dispenser.”

“Now that’s original!” I smiled.

“Yeah,” she grinned sheepishly.

“Well, you will have a good story to tell.” I said. “My job is to help you understand what the doctors will do, and if you want, to give you something more fun to focus on while they fix you up.”

As I was speaking to her, the doctors began to unwrap the bandages that swathed her arm. I almost gagged at the sight of a large, ragged tear on the inside of her upper arm. The muscle and fat hung from the bloody gash. I took a deep breath and refocused on Nikki’s face.

“So, first the doctors are going to wash your arm with a lot of sterile water, to make sure that there aren’t any germs before they close your wound. They are going to use a really big syringe to squirt the water, but there won’t be any needle attached. Do you want to watch, or would you prefer to imagine yourself someplace fun, like at a beach?”

“Beach,” she said quickly. I was frankly relieved. It should always be a child’s choice about whether or not to look, but her wound was ghastly. Even I didn’t want to look!

“Okay, so I want you to take a few nice, deep breaths with me, okay?”

I demonstrated some slow belly breaths, and she complied.

“Do you want to close your eyes, or look at me while I help you imagine the beach?”

Nikki chose to keep her eyes open as I began to guide her into a make believe scene.

“Okay, I want you to keep breathing nice and deep. Imagine that you are standing on a vast, beautiful beach, looking out at a bright blue ocean. Who would you like to be with you on the beach?”

“My mom,” she said.

“Okay, so your mom is with you. You are both in your favorite bathing suits. The air is warm and sunny, and a gentle breeze is blowing. I want you to dig your feet into the sand and tell me what it feels like.”

“It feels hot on the top and cooler underneath the deeper my toes go.”

We continued along this path. I supplied prompts and she filled in the blanks, her eyes locked on mine as the doctors irrigated her arm. This child’s ability to block out the fear and pain, even during the actual suturing of the wound, was remarkable.  She stayed on that beach during the whole procedure, calm and engrossed in the fantasy.

I thought of Nikki and her bravery and took long, deep breaths as the radiology tech squeezed my breasts one at a time into the unforgiving machine and the needle pierced my skin again and again. Continue reading →

Driving the Camel Installment #2

~ debvilasconsult ~ 6 Comments

 

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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.

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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.

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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. Continue reading →

Driving the Camel: Adventures of a Child Life Specialist

~ debvilasconsult ~ 26 Comments

 

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Prologue

 

I have always thought of life as a spiral. We grow whether we want to or not, but not necessarily in a linear fashion. We encounter our unresolved issues again and again, and yet we develop at each turn, so that our challenges never look exactly the same to us as they did before. Sometimes, we might not even recognize them for what they are, our repeated opportunities to be whole, healed despite all of our woundedness.

My cancer diagnosis in 2013 was one such turn. It caught me unaware, and yet it provided me with opportunities to revisit my life and stretch beyond my comfort zone in ways I never could have imagined.  A writing program for cancer patients provided me with the structure to revisit my career as a child life specialist, mining memories for wonderful stories that serve to inspire and connect. These stories of the children and families who molded me into the professional I am, weave together in this book with my past and present encounters with the medical environment, as both patient and healer. They show the tender shoots of joy that can exist in the rich soil of pain and suffering. It is my life story, and the fibers of this narrative are the tales of children and people who have taught me so much over the years. I am ever indebted to their presence in my life.

Getting a book published is no easy accomplishment. One in eight women will be diagnosed with breast cancer at some point in their lives. Inspiring stories of survival and life after cancer have a wide audience in not only diagnosed women, but their friends, family and caregivers. However, the market is saturated with cancer narratives, and even though my spin as a child life specialist makes my  story stand out from the rest. it doesn’t mean the publishing world will bite. Being somewhat impulsive, and wanting my story and the good word about Child Life  to reach as many folks as possible, I have decided to use my blog to start the ball rolling. I will be publishing segments of my book on a weekly basis, except for breaks every once in a while for other topics. It is far from a perfect book. I am no Jodi Picoult or Anne Lamott (two of my favorite authors). But I do have something to say that I hope will touch and inspire some people out there. If you are moved, please share my story with your loved ones.

The names of many characters have been changed to protect their privacy.

 

Part One  Getting Better

Chapter 1: Two for One Sale

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My yellow lab-pit bull mix yanked hard on the leash as she lunged at a squirrel scampering across the Bridle Path. I reeled her back in, admonishing her with an angry “Gracie!” as I fumbled to secure my bluetooth headset. It was hard enough to hook the stupid plastic loop  over my ear without her pulling my arm off.

Mark answered on the first ring.

“I’ve got bilateral breast cancer,” I blurted out. I knew the second the words came out of my mouth that I should have waited to share this information with Mark. Waited at least until I was face to face with him, instead of walking our dog in Central Park and blathering into my cellphone. My life partner was driving to work in midtown traffic, certainly not in a good space to hear such awful news.

“I’ll be right home,” he said.

I’d known it was a possibility of course. A call back from the radiologist for another look and eight core biopsies  had my imagination running down all kinds of twisting paths. But with each turn, I’d say to myself, “It’s probably nothing. No use worrying until I know for sure.” I’d shift my focus to something more positive, try to stay in the present. Some might call that denial, but I like to see it as coping.

I finished my routine 1.6 mile loop around the reservoir and met Mark back at home. We sat in the lobby of our townhouse on the window seat, the sunlight sifting through the thick glass onto our clasped hands. I can’t remember why we did that, why we sat there instead of going upstairs to the privacy of our apartment. Maybe Mark had to return to work right away, or thought he had to. But for the time being, he was there, and I held his hand to anchor myself.

“What does this mean?” he asked. “What stage is it? What happens now?”

Mark’s questions mirrored my own, and I had few if any answers. I knew that I had tumors in both breasts, but I had no idea what stage or how far it had spread. I’d never felt a lump or had any symptoms. My annual mammogram and ultrasound had picked up the tiny images. I did know one thing. I was going to get on the phone right away and get an appointment with the premier cancer hospital that stood not twenty-five blocks from our home.  I had worked there for ten years, at the beginning of my career, and there was no question in my mind that I would get the best care there.

Mark ran his hand repeatedly through the scant hair on the top of his head. “I can’t believe this. I am so sorry. This is not what I expected.”

“Me neither, and I don’t even know what to think. This doesn’t feel real yet. I don’t even feel sick.”

“Well,” he said. “We will take care of this together.”

“Do you really think we will be okay?” I asked.

“You mean as a couple?” He hesitated. “I guess this is either going to bring us closer together, or pull us apart.”

Those might not have been the most romantic or reassuring words, but they were truthful. I’d heard some horror stories about spouses leaving their loved one after a breast cancer diagnosis, and we weren’t even married in the traditional sense of the word. Not your average mid-life couple, we’d been together for twenty-nine years, but had never taken that final leap of faith. As the eldest child of holocaust survivors,  Mark had grown up in the long shadow cast by unspeakable crimes committed against his family during World War II. In his world, marriage and family did not translate into the fairy tale vision of a comforting hearth. His mother had suffered from severe Post Traumatic Stress Disorder for most of Mark’s life, and as her primary caretaker, he had developed a hearty aversion to anything and everything having to do with hospitals, doctors and caretaking. My cancer would surely test our relationship’s rough edges.

“I choose closer, I said.”

We hugged tightly before he left for work, and I went upstairs to begin the process of finding a surgeon. Two days later, we walked into the hospital where I had spent ten years caring for cancer patients. I’d moved on to teach in a graduate program in Child Life, advising and instructing students as they practiced their clinical skills in area hospitals. But 16 years ago, as a child life specialist, I had helped children and families navigate the pitted path of cancer diagnosis, treatment, survival and at times, death. Child life specialists are trained in child development, family systems, bereavement, medical education, play techniques and ethnocultural issues. Armed with a degree in early childhood special education, with a concentration in child life, I worked to ease the suffering of children facing illness and hospitalization. Using play, I helped them understand what was going on with their bodies, acting out diagnoses and procedures on dolls using real and pretend medical equipment. I prepared them for everything from routine blood draws to amputations.

Play is so many things in the hospital: it is the language of children, the way they express what words cannot. It is how they process and make sense of the frightening things they experience in the unfamiliar medical setting. It is their way to keep being kids in the face of suffering way beyond what any child should endure. I used toys to shift their focus during painful procedures. I ran playgroups in a sunny and inviting playroom, where children donned stethoscopes, surgical masks and rubber gloves, becoming doctors caring for cloth doll patients.  I brought them activities  at the bedside when they were too sick or weak to leave their beds. At play, the children could be the masters of their universe and take back some of the control and power usurped by the necessity of medical treatment.

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?