This is part one of a four-part series written by Ted Sibley, a former Children’s patient from Plymouth, Minn., who used to work as a nursing assistant and pharmacy technician at Children’s while attending medical school, about how cancer drastically impacted all aspects of his life from youth to adulthood.
Part 2: Cancer delivers another blow
Part 4: ‘I’m a cancer survivor’
Ted Sibley, MD
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. This first happened to me when I was 13. Twenty years later, I still feel the ripple effects.
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 the latest pimple to surface overnight. I looked forward to a summer filled with baseball, swimming and family vacations, just two to three weeks away.
Over the past year, I noticed a dull ache in my stomach but never gave it much thought. It wasn’t bothersome until I ate lunch. I waited out the cramps. But I started having more-frequent cramps and stomach aches. I made a daily habit out of drinking Pepto-Bismol before and after school. I didn’t tell anyone about what was happening, until one morning.
I remember waking suddenly, 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 before passing out in the hallway next to my parents’ 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. Maybe I’d eaten bad food the previous night, or maybe I was anxious about the end of the school year. We decided to skip the emergency room and go to our local urgent care to rule out anything serious.
We told the physician 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 provided 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.” My dad rarely cried. I knew they weren’t 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 confused about why he was suddenly asking all these questions. And why did my father look as though he were about to cry again? I kept saying “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: 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 Minnesota.
The next week was a whirlwind of tests, CT scans, lab work while specialists tried to figure out what was happening. My family wanted answers; I emotionally shut down. After hearing I had cancer, I had so many thoughts and feelings. I was angry at the doctor who broke the news. Who was he? 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 needs 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 the tests and exploratory surgery, we held a family meeting. I had choriocarcinoma, 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 chemotherapy. Within the first couple of days, I started to feel weak and tired. I underwent chemotherapy before the anti-nausea drug Zofran existed. 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 significant weight because I was unable to eat. All of my nutrition came through IVs, and even the smell or sight of food made me feel sick. Like other children receiving chemotherapy, my hair fell out. Once a strong and healthy 13-year-old boy, I looked as thin as a rail. 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 ended up with a fever, returning to the same room from which I had just been discharged.
Cancer had taken my childhood. All my dreams for the upcoming year quickly vanished before I had time to adjust. I went from a teenager enjoying school, sports and friends to one who was contemplating 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 was changing. I decided to live what life I had left. I found joy in visits from my family and friends and looked forward to phone calls and letters. I made new friends in the physicians, nurses and techs in the oncology unit. I found myself laughing and even smiling when they were around. Instead of being angry with God about what He had done to me, I found strength, 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 avoided discussing 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, five 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.
Cancer had thrown its punches, but it 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.
Ted Sibley, MD, is a doctor in emergency services at Truman Medical Centers in Kansas City, Mo., and a clinical assistant professor for the emergency medicine department and adjunct clinical assistant professor for the master of medical science physician assistant program at the University of Missouri-Kansas City.