January 1996
I was young. Just 19 years old to be exact. It was winter break following my first semester at Lake Superior State University. January 1996 was the month that forever changed my life.
After an emergency surgery to remove what I would later discover was a small orange sized lymph node in my left groin, I was still unable to walk. The incision was painful, yes, but the newly swollen lymph node that flared up just days after was of more concern. It swelled into my left hip; scar tissue wrapped itself tightly around the joint. It was excruciating pain…something unlike anything I had ever experienced before.
Just under a week following my release from the hospital, I returned to my surgeon for a checkup. My mother in tow, I was handed the news that nobody expects. That no 19 year old with an entire life on the horizon should hear.
Dr. Miller ”Shelly, the lab results have been analyzed. You have cancer”
I sat speechless in my hospital gown on the cold vinyl table. I didn’t cry. The emotion was too intense. I looked at my usually composed mother. Her eyes were red and swelling with tears. My next question was obvious.
”What kind of cancer do I have?”
Of course I wanted a definitive answer. I wanted her to tell me without question exactly what I was wrong with me so I could better understand for myself what was wrong. But there was a catch. The closest hospital system had been unable to diagnose my cancer as a result of some anomalies. So, the sample (my extremely large lymph node) was sent to the cancer research center at The University of Michigan. I on the other hand was immediately referred to a local oncologist.
That oncologist (who I saw later that very day) was of little comfort. He was cold, spoke to me as though I was a child, and provided no information of any use. I returned home, held up by my mother and delivered to my father’s arms. He too wept. Wept in anger, disbelief, and an unbearable amount of pain. My usually stoic sister was unable to look at me without a rush of tearful emotion.
It felt horrible to be in this place. Afflicted with a deadly disease (then unnamed aside from “cancer”) that not only caused me great pain. It was hurting everybody around me. In an effort to gain the best care available in Michigan, my family managed to push my way into the unusually difficult to access University of Michigan. A few days later, I sat in a wheelchair in the waiting room of the Hematology/Oncology clinic awaiting care by Dr. Bockenstedt.
She was a quiet, caring, peaceful woman. She treated my family with respect and understanding. She, along with the nurses, provided me with the comfort that I needed at my tender age.
I again formulated a question.
So. What cancer do I have?
This time, the answer was a bit more certain. They still were having issues diagnosing me, but they had narrowed the field to that of lymphoma. Cancer of the lymph nodes. Cancer of the immune system. Yes, it is indeed as bad as it sounds. Lymphoma metastasizes in a number of forms. The one commonly associated with young people is Hodgkin’s disease. After some trial and error it was decided that this was not my affliction. Next most commonly seen (though not really among young people) is b-cell non-Hodgkin’s lymphoma. Once again. Not my disease.
I had non-Hodgkin’s t-cell lymphoma…an uncommon form of the disease often associated with AIDS and HIV. Neither was applicable. I was a freak of nature. A health anomaly. A painful reminder that teenagers aren’t immortal.
My life quickly changed. I still suffered with the aftereffects of major emergency surgery. But following a bone marrow tap, ridiculous amounts of blood taken, various CT scans, dozens of pills, and mounds of other tests Dr. Bockenstedt decided on a method in which to fight my cancer. I was to undergo six rounds (every three weeks) of frightening sounding CHOP chemotherapy and four weeks of radiation.
And so went what should have been my second semester of college. I underwent chemotherapy, watched my hair fall out from the root, bloated up from steroids, and lost friends. Between the loss of hair and friends, the experience was pretty miserable. I had little appetite, so nausea wasn’t a factor. But the image that was reflected in the cruel mirrors managed to turn my stomach every time. The bald moon face was not me. It couldn’t be. But it was…
Through my final chemo treatment on May 1, 1996 I managed to hold on to just four friends from childhood and high school. Many were afraid, some were reminded of their own mortality, others couldn’t even look at me. The fact was that I was their worst nightmare. But those four friends, Amy, Karyn, Kristin, and Lisa, stuck with me even when I was grumpy and ugly.
But the fact that I was regarded as a freak unfortunately extended to the public. People would peek around aisles at me (while I waited patiently for my piles of prescriptions). People whispered and spread rumors to others that I was terminal. People stared and laughed. The adults were the worst. Children at least would ask questions.
To make matters even worse, I was horribly tired. I would fall asleep during conversations and while writing. I’d pass out playing cards. I completely lost my short term memory and attention span…two of the attributes that most helped me to be a good student.
Following chemo, radiation treatment was easy. Sure, it burned my skin…bubbling a square from my front to my back into an oozing red mess. But, the external pain was much less difficult than the diagnosis. But what radiation also represented my recovery from cancer. I was in remission. No cancer was in my system. No cancer had been detected for months. I was bloated, burned, scarred, and bald…but you know what? I was also clean of cancer.
That’s been over six years ago now. Six years since I last felt the direct physical pain of cancer. Yet, my life is based in part on my survival of cancer. I am 25 years old and a survivor of a disease that I later found out is over 80% deadly. I am special in that I’ve learned from personal experience the importance of living each day with purpose and intent.
Today, few memories of the ordeal remain. That’s the beauty of chemotherapy. It makes you remember little of your disease. My loss of memory extends through high school and childhood. I remember very little from before the age of 19. My memories were related to me by family and friends. Also remaining is a scar where the lymph node was unceremoniously ripped from my skin. The scar tissue still is wrapped tautly around my hip joint causing me a daily reminder of the ordeal. Most painful, though, is the thought that I have lost an ovary as a result of radiation.
This is not meant to make readers pity me. Rather, it’s an effort to expose my soul to those who care. To write freely and emotionally about the most important occurrence in my life has been one of my main goals since that experience. I want to educate people about cancer, mortality, pain, hurt, and survival. I survived cancer on my own terms and based on my own determination. It’s now my choice to help others dealing with cancer and remission.
Cancer free.