Li-Fraumeni syndrome survivor: 'Don’t let cancer define you'
I had adrenal cancer as an infant in 1985, so the word ‘survivor’ has been part of my vocabulary my whole life. Even though I was too young to remember what I went through, my dream was to help other kids like me by becoming a pediatric oncology nurse.
At age 22, I started to focus on a career in nursing. I also turned into a full-time hypochondriac, which ultimately saved my life.
Facing cancer as an adult
Two weeks before starting nursing school, I was diagnosed with stage II breast cancer. I was just 24 years old. After so many years in remission, I never thought I’d face cancer again.
At that point, I changed my focus from becoming the nurse I had always dreamed of becoming to the patient I did not want to be. I had a lot of scans, tests, lost my hair and ultimately had a double mastectomy. Losing my hair was hard for me at first, but I quickly realized that it’s only hair and that hair grows back.
Through it all, I stayed positive and just kept going.
My Li-Fraumeni syndrome diagnosis
Since my breast cancer diagnosis at 24, I’ve had thyroid cancer, melanoma, and most recently, sarcoma. (Yes, I’ve had five primary cancers.) I recently finished chemotherapy for the fourth time and am bald for the third time.
After my melanoma diagnosis – my fourth cancer diagnosis -- I was sent to MD Anderson, where I was diagnosed with a rare genetic mutation called Li-Fraumeni syndrome. This syndrome affects only 500 individuals in the U.S. It means that cancer will be a permanent fixture in my life.
Learning I had Li-Fraumeni actually put me at ease. I finally understood why I kept getting cancer. With this genetic information, my doctors know to monitor me very closely, which I am thankful for.
Finding empowerment in Li-Fraumeni syndrome and cancer
Even though I know I’ll face cancer throughout my life, I won’t let cancer and Li-Fraumeni syndrome define who I am. Instead, they empower me. Cancer may have kept me from going to nursing school, but I’ve still turned my diagnosis into a purpose to help others.
Today, I work for the American Cancer Society in New York City as the assistant manager of Hope Lodge. Every day I wake up excited to go to work. People always ask how I’m able to work with other cancer patients without letting my job affect me as a survivor. But as I tell them, my work strengthens me and reminds me how lucky I am. I love listening to survivors share their stories with me. Most have no idea I am a survivor, but I share my story when the time is right. I want to be approachable and don’t want anyone to feel they can’t talk to me. I want other patients to feel inspired and know that there is hope.
As I tell them, I found my hope at MD Anderson, which is even more magical than Disney World in my book (and I’m obsessed with Disney World). I share that I travel to MD Anderson every three months and that I had to live there for three months during my radiation treatment. I know how it feels to be away from home and your family during cancer treatment.
But as I tell the survivors I meet, what I love most about MD Anderson is that my treatment is based on my needs as an individual, not the last patient they saw. And with a genetic condition that makes me one in a million, my personalized treatment gives me hope and life.