SHANNON LEE-SIN

In high school, I complained about waking up with abdominal pain every morning, driving me to tears at night. I was initially diagnosed with a stomach ulcer, although I never had an endoscopy. How could I be sure it was an ulcer in my stomach and not some monster growing within me, killing me slowly from the inside? In high school biology, I learned that blood in the stool is a sign of serious illness like colon cancer, and it was typical in people over 50. I brushed off my symptoms because, in my mind, I was too young for colon cancer.

At 18, I went to college in New York, but returned to Miami three years later. In 2006, I moved to Jamaica to undertake my bachelor’s degree in architecture and assist my elderly grandparents. My gastrointestinal issues continued with chronic stomach aches and diarrhea. I saw a doctor, and he brushed it off.

During my third year in school, I again saw blood in my stool. The water in the toilet bowl was red. I panicked and went to the doctor. He said I had hemorrhoids, probably due to stress and dehydration. No physical exam was performed. The symptoms would subside for a month or two and then return with a vengeance. I went to the doctor each time. I saw about 20 doctors and they all misdiagnosed me without proper exams and scans. The nausea, pain, and diarrhea were so intense that I went to the emergency room repeatedly. People began to think it was all in my head because I was never given a diagnosis that explained my symptoms, and so did I. I wasn’t a doctor, so what did I know?

The National Cancer Institute says that the “Medically underserved are less likely to have recommended cancer screening tests than those who are medically well served. They are also more likely to be diagnosed with late-stage cancer that might have been treated more effectively if diagnosed earlier.” Perhaps I would have been diagnosed sooner and had a different outcome if I had access to different doctors.

A week after completing my bachelor’s degree, I traveled to Miami, Florida in hopes of getting a diagnosis. Within a week, I ended up in the emergency room. I was told I had ovarian cysts. Two days later, my mother found me at home severely bloated, in intense pain, and my skin turning orange. She immediately took me to the emergency room, where I finally received my first CT scan along with blood work. I had a huge abscess in my abdomen, and I was septic. I was treated with antibiotics and given a blood transfusion. The doctors said it was most likely a form of irritable bowel disease or diverticulitis. I spent three days recovering in the ICU. The infection returned twice over the next few months, so on October 5, 2011, I underwent emergency exploratory surgery.

The surgery turned into a ten-hour ordeal. A week later, I was surprised with a diagnosis of stage IIIC colon cancer and an ostomy. I recovered in the hospital for four weeks. Upon discharge, I attended my graduation ceremony in Jamaica. I began a six-month chemotherapy regimen and struggled with getting back to “normal” even after treatment was completed.

Fifteen months post-diagnosis, against my doctor’s recommendation, I had my ostomy reversal. As a single young woman, I was convinced that nobody would love me with an ostomy. It negatively impacted my quality of life. That decision has come with challenges.

Life after cancer isn’t easy. I am emotionally and physically exhausted. No one told me what my life would be like after treatment. I still suffer from long term side effects such as endometriosis, gastroparesis, chronic nausea and vomiting, diarrhea, neuropathy, chronic pain, fatigue, liver damage, and chemo brain. I have contemplated a permanent ostomy, as it could improve my quality of life.

Despite cancer and its after-effects, I achieved a bachelor’s and a master’s degree in architecture. I am currently pursuing accreditation as a Registered Architect. As much as cancer has stolen, it has not killed my dreams. Through all these years of being sick, I have become an advocate for myself and others. I am learning to say goodbye to who I was. I no longer hold on to fear. I am no longer ashamed of my disease. I am no longer afraid to share my experiences to help others.

 

https://www.cancer.gov/about-cancer/understanding/disparities