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The Oncologist, the Patient and CKN — Sharing Knowledge

Surviving Childhood Cancer: A 20 year reflection Part 1

TedSibley1by Ted Sibley, MD
Truman Medical Centers Emergency Services
UMKC Clinical Assistant Professor Emergency Medicine Department
UMKC Adjunct Clinical Assistant Professor Master of Medical Science Physician Assistant Program

Part One 

There are moments in life that define us, change us and shape who we are. Sometimes you can see these moments coming a mile away. You can brace yourself for the impact, the change it will have on your life, and prepare for its arrival. Other times, such moments come out of nowhere and hit you hard, like a punch in the gut. And, suddenly, you find yourself going down a different path than you thought you would, while struggling to make sense of what just happened. Everyone has had at least one of these moments in his or her life. When we reflect on our lives, we define time periods as “before” or “after” these events occurred. They are the stories we tell our friends and family. They are the reason we sometimes wrestle with “why?” My first moment occurred when I was 13 years old. Twenty years later, I still feel the effects of that initial shot to the gut.

On May 18, 1995, I was a typical teenage boy finishing seventh grade, trying to navigate both the awkward teenage years and the hallways at school.  I played every sport I could and was preoccupied with a newfound attraction to girls — and hoping they didn’t notice any new pimples that had popped up the previous night. I looked forward to a summer filled with baseball, swimming, and family vacations, just 2 to 3 weeks away.

I had noticed over the past year a dull ache in my stomach, but thought it wasn’t much, really. It wasn’t bothersome until I ate lunch. I waited out the cramps. But, in reality, I had begun to have more frequent cramps and stomach aches. I started to make a daily habit out of drinking Pepto-Bismol before and after school. I didn’t feel the need to tell anyone about it. After all, I had a full summer of fun awaiting me.

I remember waking suddenly one morning, as if I had been struck with a baseball bat to my chest. I couldn’t breathe, and the pain was sharp and intense. It woke me from a dead sleep at about 6 a.m., and it didn’t go away. I stumbled to my parents’ room and tried to tell my dad what was happening.

“I…can’t….breathe…,” I managed to grunt out to my father as he looked at me with concern in his eyes.

“What? What is it?” He sprang out of bed and jumped to my side.

“I… can’t….,” and with that I passed out in the hallway next to my parent’s bedroom.

I remember hearing my mother rush to my side and scream my name and feeling her touch my face. I remember hearing my father call 911. And I remember feeling helpless, lying there in the hallway. Although I never fully lost consciousness, I was not able to keep my eyes open, and I couldn’t move my arms or legs. Slowly and gradually, I came to and was able to sit up in the hallway when the paramedics arrived.

After the paramedics took my vital signs and I was able to stand up and eat breakfast, we determined that maybe it had been a fluke. Perhaps I had eaten bad food the previous night, or maybe I was anxious about the end of school. We determined that I didn’t need to go to the emergency room, but perhaps my parents would take me to a local urgent care center — just to be sure.

We told the urgent care doctor my story, and he gave me a pat on the back and told me that it sounded like a virus or maybe that I had been nervous about something, but that we should get a chest x-ray, just in case. After my x-ray, I was asked to provide a urine sample. When I returned from the restroom, I passed the examination room and saw the physician talking to my father. The doctor looked very serious, and my dad had tears in his eyes. I thought to myself, “What a strange sight,” as my dad typically did not cry. Although, I knew they couldn’t have been talking about me, because I felt fine.

When I entered the room, the physician started asking me a lot of strange questions. “Have you lost weight? Do you have frequent nosebleeds? Do you sweat a lot at night? Any strange aches or pains?” I was very confused about why he was suddenly asking all these questions. And why was my father looking as though he were about to cry again? My answer to everything was “no,” until he asked me about aches and pains. After I told him about my stomach aches for the past year, he nodded his head and showed me the x-ray. It was my heart, lungs, and bones. But there was something else in the x-ray: round balls in my lungs. And I knew from watching medical TV shows, that besides a heart, one should not have round balls in one’s chest. He sat down next to me and told me that he thought I had some type of metastatic cancer in my lungs and that I needed to go to Children’s Hospital immediately.

The next week was a whirlwind of tests, CT scans, lab work, and specialists trying to figure out what was going on. My family wanted answers, and I emotionally shut down. After hearing the words “You have cancer,” a number of thoughts and feelings crossed my mind. I was angry at the doctor who broke the news. Who was he to me? Didn’t he know that I felt fine and was really looking forward to summer baseball? I didn’t want to talk to anyone. Why would anyone know what I was going through? And why were they all being nice to me with smiles on their faces? I didn’t know them, and they didn’t know me. ”Once they do the right test and find out that I don’t have cancer, I can just go back to being who I am,” I thought. I wasn’t the kid who gets chemotherapy and loses his hair. I was the strong one, and everyone else needed to figure that out.

But, truth was, I wasn’t as strong as I thought. After all the CT scans, lab work and my first exploratory surgery, we held a family meeting. I had choiriocarcinoma, or germ cell cancer. They believed it somehow had started in my liver and moved to my intestines, kidneys, and, finally, my lungs. The largest area was the size of a softball in my liver, which was most likely what I had felt growing inside of me all the previous year. Not only did I have cancer, but I had metastatic cancer. I sat in that bed while the oncologist presented a plan to aggressively treat the tumors. When he was done, he turned to me and asked if I had any questions. After a moment, I turned to him and said, “Yes. Can you leave?”

Soon after, I started my chemotherapy regimen. Within the first couple of days, I started to feel weak and tired. I underwent chemotherapy before the development of the anti-nausea drug Zofran, and every day was a struggle with constant nausea and vomiting. My tumors secreted the same hCG found in pregnant women — except at an accelerated rate. Every day, I found myself with intense food cravings, followed by horrible nausea and vomiting. I lost a significant amount of weight because I was unable to eat. All of my nutrition came through IVs, and even the smell or sight of food made me nauseated. Like other children receiving chemotherapy, all of my hair fell out. Once a strong and healthy 13-year-old boy, I looked as thin as a rail in the mirror. My blood counts dropped with every round of chemotherapy, and I was unable to leave my hospital room for weeks and months at a time. Whenever I would get a pass to go home, I would end up with a fever, returning to the same room I had just been discharged from.

Cancer had taken my childhood. All my dreams for the upcoming year quickly vanished before I had a time to adjust. I went from a young teenager enjoying school, sports, and friends, to one who had to contemplate my life and mortality. Was this the last year I would see my family? Was seventh grade the last time I would enjoy my friends at school? Did I just have my last Christmas morning, never to experience the joy of family togetherness again?

But, while my body was breaking down and using every bit of energy it had to fight the cancer and withstand the toxicity of chemotherapy, something else inside me was changing. My thoughts and focus turned away from anger and, “Why me?” Instead, I decided to live what life I had left. I found great joy in visits from my family and friends and looked forward to phone calls and letters they sent me. I made new friends in the physicians, nurses, and techs in the oncology unit. I found myself laughing and even smiling in their presence. Instead of being angry with God about what he had done to me, I found my strength in him, even when my body was too weak to leave the bed.

Throughout that year, my attitude changed about being a “cancer kid” — and so did the treatment results. CT scans showed the tumors were shrinking and the chemotherapy was working. My family and I could talk about future plans and family vacations that we wanted to share together, when just months earlier we dared not to discuss such things. We celebrated small victories, cheered when I finished each round of chemotherapy, and found strength in our faith and each other — all while appreciating each day we had been given. At long last, it was time for my final surgery to remove the largest tumor in my liver, and within a short time I was discharged to return home for good.

The next six months were critical, and the medical team that had fought so hard to keep me alive during my treatment fought even harder to make sure there would be no recurrence of the cancer. They ordered CT scans, lab work and imaging studies nearly every week, looking for any evidence that the cancer had found another hold in my body. We discovered that although the chemotherapy had done an excellent job shrinking the tumors, it also had left scars that would not easily be undone. I was left with hearing loss, kidney damage causing high blood pressure, and severe peripheral neuropathy. I had to learn to walk again, how to hold a pencil and write again, and, eventually, how to run again.

I spent more time with physical and occupational therapists relearning body movements and coordination than I had lost from a year of chemotherapy. But, during it all, my goal was clear. I would enjoy the gift of life that I had been given and completely beat cancer. All of it. Not just the surgeries, not just the chemotherapy, not just the daily nausea and vomiting, or even the struggle to walk again. Cancer had almost taken all of it from me, and now I would get my whole life back.

During the next five years, I eased back to full-time school. I learned to walk and write without special adaptive equipment, and my hair grew in (albeit a little different). I was able to participate in, and succeed at, high school athletics as the starting linebacker on the varsity football team. I also flourished in academics, and I had numerous offers from colleges and universities to continue my education.

I was officially labeled “cancer free” on May 18, 2000, at the end of my senior year, 5 years after my cancer diagnosis. I had done it. I had beaten cancer and had my entire life to look forward to. After everything I had faced during my treatments, all that I had endured during my rehabilitation, and all the obstacles that I had overcome, nothing could stand in my way. After all, I had beaten the very thing that had brought me face-to-face with death.

It had thrown its punches, but cancer failed to knock me out. I was done with cancer and ready to put it completely behind me. That is, until it sucker punched me again, reminding me of that fateful moment when I was 13. Cancer would not leave me as I had left it. When I least expected it, deep wounds returned to the surface.

 

Read Part Two

 

 

This entry was posted in all, Childhood Cancer Awareness and Advocacy, Living with Cancer, Living with Cancer, Young Adults and tagged , , , , . Bookmark the permalink.

2 Responses to Surviving Childhood Cancer: A 20 year reflection Part 1

  1. Pingback: Surviving Childhood Cancer: A 20 year reflection Part 2 | Cancer Knowledge Network

  2. Pingback: Surviving Childhood Cancer: A 20 year reflection Part 3 | Cancer Knowledge Network

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