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The Oncologist, the Patient and CKN — Sharing Knowledge

Surviving Childhood Cancer: A 20 year reflection Part 2

TedSibley3by 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

Read Part One

Part Two

Cancer was now behind me, and my focus shifted to a future without oncologists, CT scans, and specialists. For the first time in 5 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) in Minnesota, 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 participating in football. At first, I didn’t tell my teammates about my previous cancer diagnosis for fear they would take pity on me and treat me differently. Eventually, though, I began to share my story when guys questioned me 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 was interested. As my friend introduced me, one of them 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 would 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 out. 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 and did not care that cancer was part of my past. 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 began longing for something else. I had been so focused on getting through chemotherapy and rehabilitation, that I hadn’t thought much about what I wanted to be doing when I was 30, 40, and 50 years old. During one of our talks, I complained to Erin about being 19 and not knowing what to do with my life. She listened, paused, tuned her head toward me and said, “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.”

That was it! That was what I was missing! 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 even was able to get a job as a pharmacy technician at the same Children’s Hospital in Minneapolis, where I had been treated. I found myself making 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. So, I contacted the oncology department to inquire about possible job openings. After completing a summer course, I became 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 children, 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 the 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 the fall of 2005. The next couple of years were extremely challenging, but I had already fought through cancer and remembered that for focus and perspective. I felt empowered to be in medical school. What specialty would I choose? Would I want to be a pediatrician? Did I want to go all the way and be a pediatric oncologist? Or, should I choose something entirely different? Did I want to be a surgeon, or maybe a radiologist? I enjoyed my classes and the challenges that they gave me.

I started to understand the pathophysiology of my disease and the pharmaceutical interventions that were prescribed to kill the cancer that had grown inside my 13-year-old body. I enjoyed my studies in pediatrics, neurology, obstetrics, and just about every field of medicine that we covered. After the first three years of classwork, clinical rotations, and externships, I finally choose my specialty: emergency medicine. I loved the rush of the emergency department, the challenges that each day brought, as well as the breadth of patients that I encountered. I treated adults, children, pregnant females, and occasionally an oncology patient. I was able to incorporate all of the knowledge I learned in school and help others when they truly needed it.

Prior to medical school, Erin and I had become 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 the 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 begin trying to start 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 the newborn. Everything was working out perfectly.

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 among patients who had had germ cell cancer 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 positive and reassuring. Although I realized there may be a chance that we could not have biological children, I figured someone would have told me if that were the case for 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 go see a urologist — just to be sure.

At my appointment, I remember the urologist giving me some statistics about fertility among post-cancer patients. I don’t recall the details of what he said, because, in my opinion, cancer was in my past. He cited some references and gave me a handout about recent studies of long-term cancer survivors, but I was really just there out of formality. My mind was more focused on my upcoming obstetrics & gynecology rotation and how to properly deliver a baby, than it was on my chances of making one. He ordered lab tests, and I was to return 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.” No other words were written on the paper. 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 had prepared me for those words. 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 felt sick to my stomach and put the paper in my backpack. This couldn’t be true.

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.” Perhaps this was a mistake. After all, such a diagnosis would not have been sent through the mail. This is the type of diagnosis you meet with your doctor in private about. “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,” stated the urologist. “I’m sorry for this diagnosis.” The wind was knocked out of me and my stomach started to knot up once again. 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. All of our visions about our children and family together had become a shattered piece of glass. My dreams of going to the hospital with my wife and having friends and family come to see our baby were gone. All of our hopes about what we thought our family should have been were disappearing quickly. My reassurance to her that everything was going to work out had failed. 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 were going through our minds: anger, sorrow, and guilt. Everything came to the forefront and manifested in tears for both of us. Cancer was my disease. It was supposed to be in my past and 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 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.

 

Read Part Three

 

 

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One Response to Surviving Childhood Cancer: A 20 year reflection Part 2

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