Finding a Voice for Brain Cancer Survivors

I was 36 years old in September of 2006. I was giving my 18-month-old daughter and 4-year-old son a bath, when I stepped on my son’s little green plastic army man toy on the ground. My leg began to shake. I tried to say 9-1-1 to my son, but I couldn’t speak. My head hit the porcelain sink, then the cast iron tub, then the trash can, then finally the tile floor. My body went into a full grand mal seizure in front of my two babies.

I woke up covered in vomit. My wet, naked 4-year-old son was trying to pick me up off the floor, and my baby girl was pouring water over my head from her little plastic watering can bath toy.

I was rushed to the hospital and told I had a brain tumor. My sister and I looked at the ER doctors and couldn’t believe what we’d heard. It was like hearing the last line of a joke… “You have a brain tumor… And you need brain surgery.”

I was given a three- to five-year life expectancy. I told my neuro-oncologist at Memorial Sloan Kettering Cancer Center that all I heard was that I could expect more life.

After my diagnosis, surgery and paralysis, I left the hospital with so many questions. I looked for a brain cancer community similar to the one built around breast cancer — a strong, embracing, pink ribbon wearing, group of walking warriors. But I found none.

All I found was tremendous sympathy, and that was not what I needed. I needed answers! I needed other patients who had been what I’d been through: a life changing nightmare.

Having had a background in marketing and advertising, I decided to re-brand brain cancer in Connecticut. I wanted every person diagnosed after me to have a face to look at, and a voice to hear of someone living with brain cancer and not dying from it.

That’s when I asked a fellow survivor and our caregivers to join with me in forming the Connecticut Brain Tumor Alliance.

Over the last 11 years, we have raised close to $2 million to further brain cancer research at the Yale Brain Tumor Center and University of Connecticut Health. We’ve also set up patient assistance funds at Hartford Hospital, St. Vincent’s Medical Center, Connecticut Children’s Medical Center, Yale Smilow Cancer Center and St. Francis Hospital.

My favorite example of where those dollars have gone is the purchasing of Cinema Vision Goggles for CT Children’s Medical Center. That way, our pediatric brain tumor patients don’t always have to be sedated for their long MRIs! Instead they can watch Scooby Doo or Spongebob!

However, after seeing my quality of life declining during brain radiation in 2008, my brave doctor told me to try medical marijuana. At the time it was illegal. It saved my life as a mother, a wife, a leader, a public speaker and a survivor/thriver.

Eventually, perceptions about medical cannabis use began to shift. I even went public on the CBS Evening News with Jeff Glor about it. Laws were changing — and so was my life.

I became a public figure and speaker at many hospital CMEs and other educational seminars. I was quoted in everything from the Hartford Courant to The Wall Street Journal. Did Television interviews on several networks, wrote articles, radio interviews… even a few Podcasts!

In 2015, I was honored to be nominated to sit on The American Board of Internal Medicine. I sit on the Oncology Board as the Patient Representative. Meaning, I represent all the cancer patients in the country. I was just confirmed on to my second term, and I’m so delighted. It gives me a chance to share my experiences so that we can change the very face of cancer care going forward.

Because for me and almost every brain cancer patient I’ve met over the last 11 years, we need to be talking more about quality of life and quality of death.

As I always say, “I’d much rather live a very full half-life, than a very half full-life!”