This is part two of a four-part series written by Ted Sibley, MD, a former Children’s cancer 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 4: ‘I’m a cancer survivor’
by Ted Sibley, MD
Cancer was now behind me, and my focus shifted to a future without oncologists, CT scans and specialists. For the first time in five years, I looked at myself not as a “cancer kid,” but rather an 18-year-old who had his whole future ahead of him. After graduating high school, I chose to attend Northwestern College (now University of Northwestern – St. Paul), where I planned to major in mathematics education and play football.
I had considered the possibility of becoming a physician. After all, my teen years had provided me an informal understanding of medicine in general. While I was in high school, I had even job shadowed a couple of the oncologists who had treated me. But I came from a family of teachers, and, at that time, I did not want to pursue a career that would require 11 extra years of education.
I enrolled in my fall 2000 coursework and started playing football. At first, I didn’t tell my teammates about my previous cancer diagnosis for fear they’d take pity on me and treat me differently. Eventually, though, I began to share my story when guys asked about the scars on my chest and abdomen from the surgeries I had undergone. To my surprise, nothing changed. I wasn’t considered the cancer survivor, just one of the guys on the team. With no special treatment, I was expected to work hard and earn everything, just like everyone else. The cancer label was gone, and I opened a new chapter in my life.
During my first semester at school, a friend mentioned he knew three girls who were headed to the store for groceries. I needed milk, and didn’t have a vehicle, so I wanted to join them. As my friend introduced me, one of the girls immediately caught my eye — a beautiful blonde with freckles, soft skin and a killer smile. She moved with a poise that was attractive and radiant. I really, really liked her.
Her name was Erin, and she was studying music education with an emphasis in vocal training. She sang with the college choir and wanted to teach elementary music. We went to the store that evening, and shortly thereafter we never left each other’s side. I found myself thinking about her, wanting to be with her, and was ecstatic when I discovered the feelings were mutual. We enjoyed each other’s company and spent hours going on walks and talking to each other. As time went on, I knew that I had to tell her about my past. I knew if we were going to have a long-term relationship that she deserved to know everything about me, and I was unsure about how she was going to react. Previously, all the girls I had dated were from my high school and knew about my cancer history. Erin was the first girl I had to tell the entire story to, and I didn’t know how she’d perceive me. Would she be OK with it? Would she pity me and not tell me? Or, would she decide it was too much to deal with and break off the relationship?
During one of our talks, I decided I should tell her, partly out of fear that my mom would let it slip. I told her about the surgeries, chemotherapy, hair loss and the year of being unable to eat. I told her about the kidney damage and the high blood pressure, the hearing loss and nerve damage. I told her about my rehabilitation and years of therapy just to be able to walk, write and tie my own shoes. I left out no detail, and after putting it all out on the table, she simply looked at me and said, “OK.” She had no judgment or reservations. Her only question: Would my cancer history affect me having children? I strongly reassured her that, as far as I knew, I had the same odds as everyone else. After all, I was five years’ post-treatment, and no one had mentioned the possibility of infertility. Cancer was in my past, I told her, and it would not be a problem in our future.
Our relationship developed further, and we started talking about the possibility of marriage. We enjoyed discussing our dreams and life together. How many kids would we have? Would they have her freckles or my offset ears? We laughed at the fact that we both have small noses and wondered if this was a gene that we would pass on to our children. Did we want all boys, all girls, or both? I loved talking with her about our future without cancer looming in the background. We were moving forward together, and my cancer history had no place in our life.
I began to struggle with deciding on a career path. I knew that I enjoyed people and excelled in math and science. I thought mathematics education would be a great career fit, but at the end of my freshman year, I wanted something else. During one of our talks, I complained to Erin about being 19 and not knowing what to do with my life. “Why don’t you become a doctor? After all, your life experience is more unique than most others’, and you do well with math and science,” she said.
She made it sound so simple, and somehow I had been missing it. I enjoyed interacting with people, and math and science were my best subjects. Being a medical doctor incorporated all of these passions. The next year, I changed my major to pre-med and decided to transfer to the University of Minnesota to complete a biology degree. I was able to get a job as a pharmacy technician at Children’s. I made the same medications I remembered receiving as a patient just a few years earlier and even made the chemotherapeutic medications that had killed my tumors and saved my life. I had come full circle and now had the focus and drive to turn my cancer history into something good.
After working in the pharmacy for a few years, I realized I missed interacting with people. I completed a summer course to become a nursing assistant and got hired to work in the same oncology unit where I had been a patient.
During that time, I found my passion for medicine. I worked side-by-side with the same doctors and nurses who had taken care of me when I was undergoing treatment. I was able to connect with the kids and spent hours talking with the families about my treatment and time as a patient in the hospital. I was able to relate to the teenagers who were angry about what was happening to them, and I provided hope to families who had recently received a cancer diagnosis. I felt needed and important, and it fueled my desire to become a doctor. I wanted to help others, and I wanted to give something back to the medical establishment that had saved my life.
I was accepted and enrolled at the University of Minnesota Medical School in fall 2005. The next couple of years were extremely challenging, but I had already fought through cancer. I felt empowered to be in medical school. What specialty would I choose? Would I be a pediatrician? Be a pediatric oncologist? Or, would I choose something entirely different? Did I want to be a surgeon, or maybe a radiologist?
After the first three years of classwork, clinical rotations and internships, I finally chose my specialty: emergency medicine. I loved the rush of the emergency department, the challenges every day brought, as well as the variety of patients I encountered. I treated adults, children, pregnant women and occasionally an oncology patient. I was able to incorporate all of the knowledge I learned in school and help others when they needed it most.
Prior to medical school, Erin and I became engaged, and we married in 2003. She had always wanted to start a family at a young age but understood the challenges of pre-medical studies and medical school itself. We put off having children, and instead she volunteered in our church’s nursery and enjoyed time with her sister’s children. But after two years of medical school, we were both ready to become parents. We decided to try starting a family. If we were successful, the child would be born exactly when I had accrued vacation time and could take a couple of months off with our newborn. Everything was aligning.
After a couple of months, we had no success. I spent extra time after work doing personal research in the library, looking up long-term fertility rates in patients who had had germ cell cancer — the same cancer I had — and received the type of chemotherapy that I had. I remember staying up late at night on our laptop, looking through research articles about late-term complications and the percentage of infertile patients. The numbers were reassuring. Although I realized there may be a chance that we couldn’t have biological children, I figured someone would have told me. I couldn’t remember any conversation with my oncologist or parents about infertility. After another unsuccessful month, I reassured my wife that these things take time, but I would see a urologist to be sure.
At my appointment, I remember the urologist sharing statistics about fertility among post-cancer patients. I don’t recall the details of what he said because cancer was in my past. He ordered lab tests, and I was scheduled to come back in two weeks for the results.
The next week, I came home from 30 hours on call delivering babies at the hospital and crashed in my bed. I woke in the afternoon and went to get the mail. Inside was an envelope from the University of Minnesota Department of Urology, and I quickly opened it. I expected a reminder about my follow-up appointment, but instead it was a laboratory data sheet. I saw my name and date of birth at the top, and written below in the graph were big black letters that were circled, “No Sperm Identified.” That was it. There were no other laboratory references and nothing about future appointments. I rubbed my eyes. I was drowsy and delirious from the overnight call shift. But no matter how long I looked at that paper, the words never changed.
I felt numb. Nothing prepared me for this. This wasn’t real. I had beaten cancer, and my future was healthy and strong. I was no longer the “cancer kid.” I was a medical student preparing myself for a career of saving lives and helping others live. How could this be true? And how could it come to me in such an impersonal way? Letters on a lab sheet written by a black Sharpie that turned my life upside down. This was a punch in the gut — just like when I was 13.
I didn’t tell my wife for a week. How could I? All I had was a piece of paper with my name on it and circled letters, “No Sperm Identified.” Maybe it was a mistake. After all, such a diagnosis would not be communicated by mail. “This has to be a mistake,” I kept telling myself.
A week later, I followed up with the urologist, and there had been no mistake. My laboratory specimen failed to reveal a single sperm.
“You are infertile,” the urologist said. “I’m sorry for this diagnosis.”
My stomach churned. He told me about possibilities of fertility treatments, but all I could hear were his initial words over and over again. I was unable to have biological children. My wife and I would never share the joy of having a child who looks just like us. My dreams of going to the hospital with my wife and having friends and family come see our baby were gone. I thanked the urologist and drove home to tell my wife.
She was sitting on the couch, reading a book when I returned home. She looked up and turned her head toward me, “Well, how did it go?”
I couldn’t talk. I couldn’t say anything. I started to speak, and no words came out. All I could do was shake my head, and tears started flowing. “I’m so sorry,” I eventually managed to say, showing her the test results.
We sat on the couch and cried. So many thoughts and emotions went through our minds: anger, sorrow and guilt. Cancer was supposed to be in my past, not affecting anyone else. I could deal with taking daily medications for kidney function and hypertension. I could deal with hearing loss and nerve damage. But never in my life had my cancer so greatly affected someone else. My wife was the innocent bystander, and now the scars of my past had resurfaced to wound us deeply. A piece of our future was gone. And I couldn’t do anything about it.
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.