Rhabdomyosarcoma and osteoblastic osteosarcoma survivor: "Don't let cancer shut you down"

When I was first diagnosed with rhabdomyosarcoma in 1990, I was a 22-year-old college student. I didn’t know anything about cancer.

My cancer story started when I woke up one morning and noticed my face was swollen on the left side. My mom scheduled me a doctor’s appointment. The doctor said it was allergies and gave me a prescription. But several days later, my face was still swollen. I also had severe headaches and my left eye was protruding out.

My doctor sent me to an optometrist, who scheduled an MRI. That’s how we finally figured out that a tumor was causing these problems. At that point, I shut down. I was scared.

My rhabdomyosarcoma diagnosis at MD Anderson
My doctor referred me to MD Anderson, where I was assigned to Robert Benjamin, M.D., whom I now refer to as My Dr. B and the best doctor this side of heaven.

Dr. Benjamin gave me a concrete diagnosis -- ethmoid sinus rhabdomyosarcoma. Though it’s the most common childhood sarcoma, it’s still extremely rare. At that point, there was no static for a survival rate. Yet I felt I was in good hands at MD Anderson. My care team was knowledgeable and compassionate.

My rhabdomyosarcoma treatment
In just three weeks, my world had changed dramatically. The left side of my face was disfigured, my eye was protruding out because of the tumor, and I was seeing a doctor every day.

Dr. Benjamin told me to look at everything as an investment for the rest of my life. He said I should focus on getting better. I did just that, moving back home with my parents and sister. Just as my family provided me strength, so did the prayers I received from my church.

All of this love and prayer helped me through aggressive chemotherapy, radiation therapy using cobalt, nausea, vomiting, fatigue, blood transfusions and emergency room visits. My weight dropped to 98 pounds, but I survived. In May 1991, I was declared cancer-free.

Living and giving back after rhabdomyosarcoma
After treatment, I knew I needed to use my experience to spread hope and educate others about cancer.

In 1992, I started volunteering with myCancerConnection, MD Anderson’s one-on-one support program that connects cancer patients and survivors with others who’ve been there. I also volunteered in what was then MD Anderson’s only Hospitality Center.

Whenever I spoke with other cancer patients, I listened to their stories and fears, shared my experiences and provided encouragement. Through these interactions, I realized that one of my life’s purposes is to empower other patients and help them triumph in the face of cancer.

In 1995, I got married and moved to another city. My husband and I knew that I might not be able to have a child because of my cancer treatment. But we were blessed with a daughter, and life was great.

I began to work in a cancer facility, where I worked directly with cancer patients. Some days were difficult, but giving hope and help made it all worth it. We eventually moved back to Houston.

My second sarcoma diagnosis
In 2007, my yearly mammogram revealed a phyllodes tumor. Thankfully, it turned out to be benign.

In September 2013, I began suffering from chronic allergies and sinus problems. I knew this could be a side effect of previous radiation treatment to the nasal area, but this time I felt numbness in that area. When medication didn’t help, I underwent an X-ray and MRI, which revealed another tumor.

I returned to Dr. Benjamin, who diagnosed me with radiation-induced osteoblastic osteosarcoma of the left great sphenoid wing/skull base.

I cried uncontrollably. This second diagnosis seemed so unfair. Just three months earlier, my mother had died after a three-year battle with colon cancer. And now I was facing cancer again.

I had the same oncologist, same favorite phlebotomist and same church family as I’d had in 1990. This gave me confidence and comfort.

In October 2013, Franco DeMonte, M.D., performed skull base surgery. Then, in December, I began aggressive chemotherapy treatments that initially required hospitalization. In August 2014, I completed my last of eight cycles of methotrexate.

Finding strength despite my scars
Today, I have no evidence of disease. Yes, I still have scars and side effects, including migraines, fatigue, tenderness in my feet, a left lazy eye and vision changes, numbness in a small area of my face and left ear hearing loss. But I’ve found strength through my faith and by opening up and sharing my story with others.

As I tell them, cancer is scary, but don’t let it shut you down. Accept love and help from others. Dust yourself off and get back up even if you have to crawl sometimes. This is your life, after all, and it’s worth fighting for.

To connect with other cancer patients and caregivers through myCancerConnection, please call 800-345-6324 or visit myCancerConnection online.