Diagnosed at 17: Here's my story
Around the 8th grade, just before finishing junior high, I began to see red specks in the toilet after I'd go "number two." I assumed it was no big deal, and I even reasoned with myself. I didn't know teenagers could get colon cancer.
"Maybe it's ketchup. Or Twizzlers. Or tomatoes," I hoped.
I put myself on a "no red foods" diet and expected my problem to go away. It did—at first. But then, the red came back. Yet I stayed silent. I didn't know blood in the stool was a sign of colon cancer in teens.
As a volleyball player who barely walked onto the court because of the tight, spandex shorts, I was embarassed about my body. Mortified, actually. The last thing I needed was people knowing what I saw when I pooped. So I kept it secret for a really long time.
It must be hemorrhoids
Eventually, I accepted that the red specks I kept seeing were indeed due to bleeding. Yet the blood kept changing. One day, the specks would be bright red, yet other days, they'd look darker. Finally, I broke down and decided to ask for help. A blushing high schooler, I confided in my mom about the blood and she looked it up online.
This was 2001, the Internet was new. The websites we found indicated it must be hemorrhoids.
Other causes of blood in the stool were mentioned, but indicators of serious conditions that only happened to older people—like Grandma and Grandpa.
“What a relief,” I thought to myself as I assumed I had some 'roids.
From red to black
The blood kept coming. In fact, it eventually became normal. If I went "number two" and didn't see it, that was weird. But one day, I began seeing more blood than usual, and it turned dark red and black. Severe stomach pains soon appeared for no reason, and I was really fatigued. It was not normal for a high schooler. I finally confided in my boyfriend, Mike, that something was wrong.
"I think I need to see a doctor." Fortunately, he began to pester me to go.
You can get colon cancer at 17?
Mike kept insisting that I visit a doctor but I didn't want to. My problem wasn't that bad, or so I thought, and I had other things on my mind. But one day, my parents overheard Mike's insistance and realized something was very wrong. I was rushed to a gastroenterologist (GI), Dr. Taormina, who insisted we do a colonoscopy.
I soon became very grateful for his insistence that we do a colonoscopy despite me being a teenager. His decision helped save my life. Nobody, and I mean nobody, expected he would discover the source of my bleeding: a tumor... stage 3 colon cancer. This all happened three weeks after I turned age 17.
My days of high school algebra quickly turned into colon talk, cancer hospitals and itchy, scratchy hospital gowns.
“You are SO young - we’ve never seen colon cancer in a teenager,” many doctors and nurses would soon say. I felt like a unicorn in the oncology ward.
I eventually started treatment, FOLFIRI, because doctors wanted to, "hit it hard." I’d never been so sick; it was worse than the flu. I puked for days after the infusions. My mouth hurt, and I could taste medicine in my spit. I began radiation, too, since my tumor was at the junction of the colon and rectum. Nothing about cancer treatment came easy.
It was pretty strange to be both a teenager and a cancer patient. I didn't fully realize that my life was on the line. Colon cancer wasn't supposed to happen to many 17 year olds, yet it was happening to me. I was tired, sunburned, skinny and weak. Yet, full of faith, I also believed God could use my illness to spice up my testimony. I belived He would help me survive.
Searching for Normal
The hope of getting back to a “normal” life kept me going, as well as ignorant bliss and young love. Although my health had tanked, my love life was going strong. Despite the setbacks during treatment, I did make it to junior prom.
After six months of treatment, and two major surgeries, I was done. I walked away from cancer, declared "no evidence of disease," and a few weeks later, I returned to school for my senior year of high school. Cancer was a fluke of my past, or so I thought.
Colon cancer... again
With cancer behind me, I focused on life ahead. High school graduation, college, new friends and a wedding—it was why I'd fought to live. Five years after we first started dating, the guy who insisted I see a doctor slipped a ring on my finger as we both said, "I do." With cancer behind us, we were over "in sickness" and so ready for "in health."
But one day after a routine colonoscopy, I woke up to familar stares and concerns: Adenomas polyps, to be precise. One finding looked really concerning. Dr. Taormina offered a bold recommendation: a subtotal colectomy, which meant another colon surgery. None of us expected the pathology reports to come back and show stage I colon cancer.
Yes, that's right, I was diagnosed again. At age 25, I became a two-time colon cancer survivor.
It was hard.
Colon Cancer in my 20s
Surviving cancer once was hard, but facing it a second time in my 20s brought a totally new experience.
A flood of fear, anxiety and anger rushed in. I doubted, questioned and got really angry with God. My marriage was strained and I began to really resent my body and have even more body image issues.
I didn't care that the cancer itself was less life-threatening or that doctors felt good about catching it early and me not needing more treatment. While my body may have rebounded faster than my first cancer, my heart and mind took a huge hit.
Going to Counseling
After a hard few months of trying to handle colon cancer in my 20s on my own, I finally recognized that I needed help. I began counseling, which quickly turned into trauma therapy. As part of my healing process, I started blogging at Semicolon Stories. Eventually, I embraced telling my survivor story, which led to patient advocacy.
Over time, my body, heart and soul began to heal.
Colorectal Cancer Advocacy Groups
Healing looked like modeling for the Colon Club's 2009 Colondar. As I got involved in the community, I connected with Fight Colorectal Cancer (Fight CRC). I was flabbergasted when they offered me my dream job, Communications Director. I began to criss-cross the country to tell my story and the stories of many others. Our big campaigns and projects helped give my cancer meaning and purpose.
After five years, I slowed down and left the role, returned to freelancing yet staying connected with the org. Today I continue to advocate alongside Fight CRC and proudly serve as a communications strategist and the Editor in Chief of Beyond Blue, Fight CRC's patient magazine.
So what's behind the two cases of young adult colorectal cancer, at age 17 and 25? It took us awhile to find out.
Genetic testing after each of my two cancers indicated a "variant of unknown signifigance." Yet thanks to my double-dose of cancer and extremely young age, doctors began treating me like a Lynch sydnrome patient. Per the recommendations, I had a total hysterectomy and switched to yearly colonoscopies.
One day many years later, the genetic laboratory reclassified my mutation and contacted me with the news: I officially have Lynch syndrome. But more curve balls came when neither my mom nor dad tested positive for the same gene variant. I have an inherited genetic disease, but I didn’t inherit it.
I am the "de novo" patient, meaning I'm the first.
Faith can survive.
Today, I am healthy, strong and cancer-free! Through surviving cancer in my teens and 20s, I’ve learned it's a physical, emotional, mental and spiritual disease. Despite the setbacks, my faith in God has grown very strong. I'm passioante about helping other survivors tell their stories. I've also received several blessings, none more special than the adoption of our daughter Mae.
Over the years, I've learned to embrace my body—although I'm human—so I'm still working on this! I've also learned how to find and use my voice, which I hope encourages others— especially gals—to not be embarassed about themselves. This freedom led to me writing my memoir which tells the full story of me coming of age, Blush: How I barely survived 17, as well as speaking.
I share my story so people will get screened. I open up so girls will learn to love their bodies and not feel alone. I hope to inspire other survivors to tell their stories. My message is clear: even when our bodies fail us, our faith can survive.