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CHAPTER 1
Evacuation Impossible
My Body Was Ground Zero
FOR WEEKS, I'd been experiencing sharp pains that shot down my legs. I thought maybe I had a pinched nerve in my back. The pain wasn't going away, and I started to experience discomfort in my pelvic area and often felt 'sick to my stomach. I was hoping to get some resolution about what was wrong.
The doctor who'd performed a colonoscopy earlier in the week had assured me, right before I was knocked out for the procedure, that the chances of cancer in someone of my age and health were less than 1 percent. Because I was a young guy without any previous health issues, those odds sounded about right to me. We'd isolate the problem, treat it, and I'd be able to get back up to full speed, personally and professionally.
Married ten years, I was the thirty-five-year-old father of three young girls. It was the end of my second year on the faculty of Wheaton College, and I was energetic about heading the school's new Humanitarian Disaster Institute I founded. My wife, Kelly, was about to begin working toward her master's degree in nurse midwifery, and life in the Aten household was moving along at full throttle. My fatigue and pain, unwelcome intruders, would soon be in our rearview mirror.
Yet as I began to emerge from the fog of the anesthesia following my procedure, I heard the doctor who'd just performed my colonoscopy informing Kelly that he'd found cancer.
"Cancer?" I interrupted, only to fall back into unconsciousness.
Again and again I would fall back under the spell of the anesthesia, momentarily, only to reawaken and interrupt the doctor trying to finish breaking the bad news to Kelly. Seven times in a row I startled awake, not remembering what I had just heard, and ask, "Cancer?" Though I only have a memory of hearing "cancer" once, Kelly shared the absurd routine with me later.
Even if I'd been more lucid, the drug-induced routine was a telling expression of my mental state. I felt like Bill Murray in the movie Groundhog Day, reliving the same day ad nauseam, had it been a horror flick. Whether groggy or sharp-witted, I simply did not have a category for the information I was receiving. Hadn't the wildly unlikely odds the doctor had shared meant that I'd be fine? Rare, unfortunate disaster befell other people, not me. And yet, in that moment, my plans for my life went out the window.
Yes, I was a goal-oriented Type-A person who'd carefully mapped out the future I saw for myself. But imagining a future in which we are not afflicted by disaster or crises isn't the sole property of advance planners. The author of Proverbs 19:21 announces, "Many are the plans in a person's heart, but it is the LORD'S purpose that prevails." Though it's natural to expect a future free of the unexpected, it necessarily means we are unprepared for the inevitable crises we will face. David Entwistle, a friend and colleague of mine, conducts an exercise with his students where he asks them to imagine their lives five, ten, twenty-five, and fifty years into the future. He told me once, "No one has ever talked about being divorced, widowed, having Alzheimer's, having cancer, or even just being feeble." He added, "Bad things happen, and they will happen to each of us. But by and large, we neither expect this nor plan for this." He was right. I had intellectually understood the statistics about people who would be forced to face hurricanes, tornadoes, fires, and even colon cancer, and yet I was — as we all are — completely unprepared for the unexpected. We are so bad at estimating risk that the experts have named our response the "ostrich effect." Burying our heads in the sand, we mistakenly ignore real potential threats.
The doctor referred me to an oncologist to further interpret the results. The following day, as Kelly drove me to the cancer center at Central DuPage Hospital Cancer Center to meet with Dr. Patel, I was nauseous and felt a shooting pain in my pelvis.
I had no family history of cancer. The worst health problem I ever faced was a broken bone in my hand, in fifth grade, from playing basketball. A million questions swirled through my mind as we pulled into the hospital parking lot. Kelly drove around the lot awhile before scoring a spot just a hundred yards from the front entrance of the cancer center.
Each step between the car and the door were heavy with the weight of the unknown.
A greeter at the information desk had pointed us in the direction of Dr. Patel's office. We'd set out as if we'd understood, but as we got farther from her desk, signs reading "Oncology," "Infusion," and "Radiology" all began to blur together.
When we finally found our way to the oncologist's office, we stood at the receptionist's desk waiting to be checked in.
"Can I help you?" she asked.
I looked away when she leaned over her desk to make eye contact.
"What's your name?" she continued.
"Jamie Aten," I said tentatively, as if unsure of whether I wanted to be him.
Still trying to make eye contact with me, the receptionist asked, "Why are you here?"
I'd not expected the question.
"Umm ...," I stammered, searching my mental Rolodex for the newest words in my daily vocabulary. "Cancer" or "tumor"? "Pelvis" or "colon" or "rectum"?
I chose against "cancer," as if speaking it aloud would afford it more power. I also steered away from both the broad "pelvis" and overly specific "rectum."
"They found a tumor in my colon."
The word caught in my throat, and I felt a welling behind my eyes.
"Alright," she replied, glancing up at me and handing me a clipboard. "Fill out your health history and then bring it back to me."
I went to reach for the clipboard but my arm and hand fell numb by my side. After a second, I started to reach for it again with my shaky arm. After a gentle glimpse and slight reassuring smile that started at the corner of her mouth, Kelly stepped in and took the clipboard for me.
Turning to scan the room, Kelly and I beelined toward the last pair of available seats.
A full year before I was diagnosed, I had visited a specialist for the pelvic and stomach discomfort I'd been experiencing. His advice? "You're so young, don't worry about it. You just need more fiber in your diet." Because of my age, he'd overlooked the possibility — granted, a slim one — that my symptoms could signal something more serious. So he sent me home with some packets of dissolvable fiber to stir into water from time to time. The prescription provided some relief. When the symptoms returned, accompanied by shooting pain in my legs and pelvic region, my general practitioner suggested a CT scan and colonoscopy. The CT scan revealed a mass resting on a nerve bundle. Had it not been for the shooting pains in my legs, I may never had known I had cancer.
I scanned the magazine rack beside the water cooler, searching for any worthy distraction. The magazine that I selected seemed promising until, flipping through it, I realized that, although there were some helpful articles, it was like one big marketing ad for pharmaceutical companies.
CALLED
"Mr. Aten?"
A nurse technician wearing brown scrubs called my name, and Kelly and I rose to follow her. We ducked into a small room where she measured and recorded my height and weight.
In a sterile treatment room, much more disappointing than the colorful room at my daughters' pediatrician's office, I sat down beside Kelly.
"I need you up here on the table," the nurse instructed, pointing to the paper-covered treatment table.
I considered not complying but dutifully climbed up and sat down. She clamped my finger with a device to measure my heart rate and squeezed my arm with a Velcro blood pressure cuff.
"Hmm ...," she sighed after announcing my blood pressure numbers. I knew they were high for me.
"Are you stressed?"
Was anyone coming for a diagnosis not stressed?
"Yeah, I am," I confirmed.
Scribbling in my chart, she let me know the doctor would be in soon. As she left the room and closed the door, I heard her drop the chart into the plastic holder on the outside of the door.
Defiantly, I returned to my chosen chair.
As Kelly sat beside me, I had a feeling of déjà vu. Though I'd never sat in an oncologist's office, the moment felt eerily familiar.
It hit me.
Nine years earlier I'd been teaching as an assistant professor of counseling psychology at the University of Southern Mississippi in Hattiesburg, a little over an hour from the Mississippi coast, just two hours from New Orleans, when Katrina was sweeping across the Gulf of Mexico heading toward land.
Kelly and I, having moved with our then two-year-old daughter, Colleen, just six days earlier, had been visiting a local Southern Baptist church in Hattiesburg when the pastor announced that a storm was headed toward the coast. A seasoned local, he assumed that most folks would go home, batten down the hatches, and weather the storm as they'd done so many times before.
Because our new home was in the country, we couldn't get a TV signal. Cable was scheduled to be installed the next day. The cell carrier we'd used in Chicago had poor reception where we now lived, so we'd not been in touch with family and friends. And though I'd met some of my work colleagues, I had no idea how to reach any of them if they weren't on campus. So, when the pastor announced that Katrina was heading our way, the news was coming as a surprise to me.
If this had been a tornado, like I grew up with in the Midwest, I'd have known to go to the basement. But there were few basements where we lived because of the water table. As soon as the church service ended, I asked a woman sitting behind me if we should be worried.
With confidence she assured us, "At worst it will be like camping for a day or two."
As Kelly and I mulled around after the service, chatting with folks in the church, the prevailing opinion was that the storm would pass without incident. These folks had been warned of storms in the past. They'd hunkered down, weathered the storm, and made it out on the other side relatively unscathed.
My thoughts took a personal turn. I wanted to believe that what I was facing would be of the "camping weekend" variety of cancer. I still wanted to believe that I could escape the impending storm.
After that church service in Mississippi, without phone or Internet, Kelly, Colleen, and I went to my office to check my work computer for weather reports. With Colleen on my lap, we waited for a weather map to load. Though we were new, what we saw was concerning. The hurricane was headed straight for Hattiesburg.
I felt completely helpless.
Unable to anticipate what was headed our way, we decided we didn't want our daughter experiencing unnecessary trauma if we could avoid it. We kept asking ourselves, "Are we overreacting?" Ultimately unable to answer that question, we decided to evacuate. Time would tell.
Kelly and I dashed home to pack up some essentials for our family before fleeing. As we drove toward our new home, with most of our belongings still unpacked, I remembered all the post-9/11 public service ads that stressed how one common household item was crucial to everyone's preparedness kit. As soon as we got home, I started rummaging through our drawers and unopened boxes to look for this lifesaving resource. Then I found it. The holy grail of preparedness, or so I thought: duct tape!
I was standing in the living room looking out our window, gripping that duct tape. I knew a threat was rapidly approaching, but all I could think was, Now what? I was in over my head. Nothing had prepared me for the devastation that was about to rip through our community.
I dropped the duct tape on the floor, packed up some keepsakes and belongings in our tiny silver Saturn four-door, and headed out of town with my family. Traffic on 59 North was thick, but it wasn't yet stalled the way it would be just a few hours later. Once we were out of the city, we just started calling friends. Ryan and Kristen, the closest friends who picked up the phone first, lived in Nashville, about six hours away, and were happy to receive us. If the storm blew over as the pastor suggested it most likely would, we'd spend the night, drive back on Monday, and have a story to tell our friends in the Midwest about the adventure of living in the South.
When we woke up the next morning in Nashville, the television showed that Hurricane Katrina had struck the Gulf Coast in the early morning hours. Stretching four hundred miles across, the storm's winds were 100 to 140 miles per hour.
The pastor was wrong.
We saw on the news that Katrina was still a Category 2 hurricane when it hit Hattiesburg with sustained winds around 100 miles per hour. It looked like bombs had been set off from the coast well past our new community. Debris was everywhere. Pine trees pierced homes like missiles. Concrete slabs were all that some people could point to that remained of their homes.
As Kelly and I waited for Dr. Patel, I felt the same helpless feeling I'd felt nine years earlier.
Wearing a white coat, stethoscope hanging from his neck, a well- dressed, slender man of average height walked into the room where Kelly and I were waiting.
"Hi, I'm Dr. Patel."
Kelly and I stood to shake his hand and then we all sat down. I knew from the first glance he was all business.
He spun his chair around, signed into the desktop computer, and clicked into a folder that contained my scans.
The screen filled with images from my previous scans, tests, staging procedure, and colonoscopy. "Here's the mass in your pelvis sitting on the nerve bundle the CT scan found before," he narrated.
Then tracing a path from the mass with his ink pen he pointed to the tumor in my colon, "It's cancer" he said.
I felt like I was back in my box-stacked office, eight years earlier, looking at radar images of Hurricane Katrina heading for our home.
Dr. Patel continued, "It's advanced. We think the cancer started with the tumor in your colon spread to create the mass in your pelvis," he said matter-of-factly. "From this it appears you have Stage IV cancer."
As his words hung seemingly hung in the air he added, "But the results from the first biopsy were inconclusive so we will need to perform another one after your surgery to officially confirm your staging."
"But the mass could still be benign, right?" I pleaded.
"Well ... it could be ... but the fact that you have a tumor and this mass, we think it's metastasized," he uttered.
Dr. Patel went on, "I also want to take a full body scan to learn more, to see if the cancer has possibly spread elsewhere in your body."
His words collided against one another in my head. In retrospect I realized that it felt like the state the narrator in The Great Gatsby described when he said, "I was both within and without at the same time." I was at once overwhelmed by what I was learning and, at the same time, almost felt myself floating away from my body and what I was experiencing.
He kept speaking awful words like "aggressive" and "advanced" and "late stage." Unable to piece them together into a coherent whole, I knew I could trust that Kelly, an experienced nurse, was catching them. There would be more tests, he explained, and then we'd determine a plan of action.
Detached from what was happening in the room, I began to tear up. Though I tried to will myself to hold it together, I felt myself coming unglued.
As if my tears were the prompt Dr. Patel needed to be reminded of my humanity, he realized that he couldn't keep talking. He paused to offer me space to gather myself.
"Jamie, maybe we pause here," he suggested. "Tell me what it is that you do."
His posture softened, and his force field of professionalism dissipated. He was still all about business, but I recognized the air of warmth that signals an effective caregiver.
"I'm a professor at Wheaton College. And I run a disaster research center."
I watched his face as he processed what I'd just said.
After considering my answer for just a moment, he replied, "You're in for your own personal kind of disaster."
My head jerked up and I looked him in the eye. Feelings of anxiety, helplessness, sadness, confusion, and shock were calmed for a moment. The synapses in my brain began firing as if they'd been lit by a flare from the emergency preparedness kit stored in my basement. Though I still couldn't process all the words he'd been using, his reframing of my situation as a disaster would later set the stage for how I thought about my cancer experience. I now had a box with which I could organize my experience.
I understood disasters.
There will be chaos.
This means I'm in the impact phase.
I'm in shock.
Hold it together.
Remember what you've seen others survive.
There are road maps for response and recovery.
For a brief moment, Dr. Patel naming what I was facing as a personal disaster lifted me out of my shock and anxiety by offering me a familiar context as a lifeline. I knew how to prepare for and respond to tornadoes, hurricanes, earthquakes, and other mass traumas. But cancer? The feelings of helplessness and anxiety that had overwhelmed me during Katrina came flooding right back with a spike of intensity.
(Continues…)
Excerpted from "A Walking Disaster"
by .
Copyright © 2018 Jamie Aten.
Excerpted by permission of Templeton Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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