By Erin Toole
Cancer: the one word that can strike fear into every person’s heart, a word that had seemed foreign to me until I volunteered in the pediatric cancer wing of a hospital the summer after my freshman year of college. I quickly realized that I had found my passion, the reason behind my drive to become a physician. The children amazed me every day with their optimism and their undying spirit. I knew this was my future, but then the one word that I had dealt with all summer came into my life and shattered my entire world into a million pieces. Instead of playing the supporting role of caregiver, I was now cast in the leading role of cancer patient — a part I had no idea how to play.
One day while at my summer job working with kayaks, I slipped and used my arm to catch my fall. Excruciating pain shot up the length of my arm and I thought for sure that I had torn or broken something so I went to see a doctor. The first doctor I saw treated me like I was five years old. He told me that I was “exaggerating” my pain and that it would never heal if I continued to “baby” it. He wrote me a note giving me permission to go back to work and continue all physical activity. I was furious with him because he did not treat me like an adult or listen to anything I said, and even worse, he did not take an X-ray. Here I was, the pre-med student, and even I knew that the routine protocol for any type of fall was an X-ray. I stormed out of his office and declared to my mom that I wanted a second opinion. Amusingly, the second doctor I saw about my arm was named Dr. Armstrong and I took this as a good sign. Dr. Armstrong treated me with respect, listened to my concerns and decided that the first course of action would be an X-ray. The minute the X-ray of my arm was illuminated by the light, I knew something was terribly wrong. Instead of the normal image — a pure white bone set against a black background — my upper arm (the humerus) was riddled with gaping, moth-eaten holes. Although Dr. Armstrong was reluctant to jump to the conclusion of cancer, I felt a sinking feeling in my stomach and began crying.
On August 14, 2001, I was officially diagnosed with an osteosarcoma of the right humerus, literally a “bone tumor.” Though in my heart of hearts I knew this was already true, hearing the three words “You have cancer” destroyed me. I went into complete denial and attempted to stay in school during my chemotherapy treatments. All I wanted was to be normal. But soon I was very sick. I began losing my hair and was far from normal. Forced to leave school for a year, I returned home and was so ill that I had to rely upon my parents to take care of me. I felt like my world was spiraling out of control and there was nothing I could do to stop it. The worst part about having cancer was not the sickness and the hair loss, though I must admit that being a bald 19-year-old was not very attractive; the worst part was the uncertainty, the unknown, the precarious balance of life and death. Every night I went to bed I cried and every morning I woke up so thankful to see my family again.
While bone cancer is relatively rare, my case exhibited several typical features of the condition. Cancer that arises directly in the bone (primary bone cancer) is not the same ailment as cancer that spreads to the bone from another part of the body (secondary bone cancer). My condition Osteogenic Sarcoma (osteosarcoma) is the most frequent type of primary bone cancer, and is most common between the ages of fifteen to twenty-five (Children¹s Cancer Web, 2003). Over ninety percent of bone tumors are located in the metaphysis (the growing ends of the bone) with eighty percent of the cases occurring in the bones around the knee (Children¹s Cancer Web, 2003). Primary bone cancer is rare, with approximately 2,500 new cases diagnosed each year in the United States (National Cancer Institute, 2002).
Osteosarcomas vary greatly in radiological and pathological features, and therefore need careful diagnosis to differentiate from other bone tumors (Children’s Cancer Web, 2003). When I was diagnosed, the doctors told me how “lucky” I was because often times osteosarcomas go unnoticed until the bone has become so brittle that it simply breaks. Once the bone fractures, the tumor is no longer localized and can enter other parts of the body where it can then metastasize. According to my oncologist, osteosarcomas most often metastasize in the lungs, which is frightening because metastatic lung cancer is one of the deadliest forms of cancer. Thus, I would need to have regular lung scans during the course of my treatment and, if all went well, after my treatments were over.
Osteosarcomas have no telltale symptoms that alert the doctor or the person that anything serious is wrong. Looking back upon my freshmen year, I realize how abnormally tired I was and how often I was getting sore throats and colds. My body was raging this war from within but I had no idea. Everyone, including my parents, wrote it off as being a freshman, staying up too late and not getting enough sleep each night. The most common symptom of bone cancer is pain in the area of the tumor; however, symptoms may vary depending on the location and size of the cancer (The National Cancer Institute, 2002). Other symptoms may include fatigue, fever, weight loss, and anemia, although none of these symptoms is a sure sign of cancer (The National Cancer Institute, 2002). Thus, osteosarcoma patients are continually tired and rundown but have no idea why until they are diagnosed. When I exercised or played golf, I never thought twice about the dull pain in my arm. I had always been extremely active in high school and I was used to the aches and pains of working out and practicing different sports. Despite my energetic, healthy nature, though, here I was: a cancer patient.
Immediately after I was diagnosed, I began my first round of chemotherapy and I will never forget the way my body froze while watching that first yellow drop of poison enter my body. I can vividly recall the burning sensation on my scalp that preceded my hair loss and the horror I felt when the first clump of hair wove itself between my clenched fingers. I spent the first few weeks stumbling around in the dark searching for someone, anyone to help me pick up the pieces of my life. I soon realized that the answer lay within myself. Although the chemotherapy treatments were fighting the cancer cells, I was the only one who could heal myself both spiritually and emotionally. I focused on my family and everything I wanted to do the minute I finished my last round of chemotherapy. I became more dedicated to focusing on the world around me and learning from those with whom I interacted. Education in life and embracing everything it offers has proven to be far more valuable to me than a book or a test. I began to look at my cancer as a blessing in disguise; after all, this was just a bump in the road, a bump strong enough to slow me down but definitely not strong enough to stop me. Using this new attitude toward my illness, I dove headfirst into the nine grueling months of chemotherapy ahead of me.
Over that nine month period I had three types of chemotherapy: ifosfamide, adriamysine and cisplatin. The original treatment plan included a fourth chemotherapy, methotrexate, which was considered the “baseline chemo” given to all osteosarcoma patients; however, I did not respond to methotrexate at all. In fact, my tumor began growing faster and I grew extremely sick because my body was holding onto the chemo for too long and causing toxic levels of methotrexate to build up. After seeing how I responded to the other three therapies, my oncologist decided to remove methotrexate from my regimen and give me more doses of the other three. These three treatments had horrific side effects, such as nausea, vomiting, hair loss and hearing loss. My chemotherapy treatments were given four months prior to surgery to assure that the cancer did not spread and was contained within my arm.
On February 4, 2002, I had a “humerus resection” during which the humerus was removed, as well as one-third of my bicep muscle and my entire deltoid muscle, and replaced with a metal rod and screws. Although I had been eager to get this cancer out of me, I was terrified at the very real possibility that I could suffer extreme nerve damage or even worse, have to have my arm amputated during surgery. Before I entered the operating room I signed an agreement that my surgeon would do all he could to save my arm, but his focus would be on saving my life. When I woke up in the ICU after seven hours of surgery, I looked down into my lap and almost laughed out loud with relief at the sight of five fingers sticking out beneath the layers of dressings wrapped around my arm. When my surgeon, Dr. Brien, came to check on me a few hours later, he asked me to wrap my fingers (which were swollen beyond belief) around his thumb and squeeze. I successfully completed his request and tears sprung to his eyes when he realized that not only would I have my arm but I would have full feeling in it as well.
After surgery I had four more months of the same chemotherapies. It felt like the year would never end. I was also enduring painful physical therapy for my arm to regain what little movement I could have given my circumstance. But finally — finally — I had my last chemotherapy and it was by far the worst one of all. I was stricken by an infection that ravaged my body, shooting my temperature up to 104 degrees for three weeks straight. I was placed in the hospital and given six intravenous antibiotics, as well as four blood transfusions and six platelet transfusions. The infectious disease specialist confessed that he had no idea what was wrong with me. My parents were terrified that they were going to lose me to an infection after we had fought my cancer so valiantly. And it truly was our battle: my mom, my dad and my brother all fought this disease with me. Their love and strength were often times the only thing that kept me going — I knew that I could never give up because my family needed me as much as I needed them. After a few scary weeks during which I was on the brink of being septic (having the infection spread to my blood), my body began to slowly fight back and I spent the summer gaining back the strength I had lost during my battle with cancer.
When I came back to school in August 2002, bald head and all, I thought that things would magically be normal again. Unfortunately, I felt more alone than ever and completely lost. I did not look like everyone else, I had missed an entire year of school, and all of my friends were no longer my classmates. I did not want to be known as the “cancer patient” so I tried desperately to pretend that everything was fine even when it was not. It took a few months, but eventually I realized that having cancer was just one part of me it did not define me. I embraced all the heartache and all the pain because it helped make me who I am today. The scar on my arm is a constant reminder of what happened but that scar has faded, just as the emotional scars have slowly diminished as well.
Although I have checkups and lung scans every six months, I refuse to dwell on the fact that my cancer could come back at any moment, and I refuse to live in fear. But I have not forgotten what I went through. I have not forgotten the nurses and doctors who saved my life, and I have not forgotten to give back. There is a reason that I survived, there is a reason that I am still here and that reason is to make a difference in the lives of cancer patients. I am now three years in remission and I feel blessed that I was given not just a second chance at life, but a deeper appreciation of what it means to be alive and a part of this world. My drive to become a physician has grown since my own experience with cancer because I know: I know the pain, the suffering, the heartache, and I realize that seeing me offers hope and strength. People are amazed that I would even want to enter a hospital again and they always ask me, “Why?” I say, “Why not?”
The day I was released from the hospital after my last round of chemotherapy, my oncologist said to me, “Erin, you¹re done!” Those words still echo in my head to this day and I smile knowing that the best part about overcoming cancer is the fact that I am not done. In fact, I am just beginning.
About the Author
Erin Toole is a senior majoring in Health Promotion and Disease Prevention Studies with a minor in Bioethics. She is currently applying to medical school with the hopes of eventually working in pediatrics. In addition, Erin is very involved on campus through Helenes, Troy Camp and Mortar Board. She was a Resident Advisor for two years in North Residential College, as well as an Orientation Advisor this past summer. Erin is also a survivor speaker for the American Cancer Society and works with their youth cancer groups.
- Children’s Cancer Web. (2003). Click for website
- The National Cancer Institute. (2002). Click for website