‘Life can change in the blink of an eye.’

Coram

“As a social worker, I’m trained to help other people. But as a person living with an extremely rare form of eye cancer, I’ve also found myself reaching out for help. It shows how life can change in the blink of an eye.

“A little over 20 years ago, when computer usage was becoming more frequent, I decided to visit the local Costco optometrist. I left the appointment in shock. She’d told me to see an ophthalmologist right away to rule out a tumor. A retina specialist subsequently diagnosed me with a nevus, or freckle, at the back of my left eye. I had laser surgery, followed up by monitoring every six months in case it became cancerous.

“In 2006, a routine exam revealed the freckle had grown. I was diagnosed with ocular melanoma, a deadly cancer diagnosed in only about 2,000 people per year in the U.S. The median age for this disease is 55; I was only 40. I had two complicated surgical procedures in which radiation seeds are placed over the tumor, which shrinks but never really disappears, so I’m still monitored every six months.

I’ve formed friendships like no others I’ve ever experienced, and also lost dear friends that have passed away.

“In over 40 percent of those diagnosed, it metastasizes within 10 years. Fifteen years later, I am still here, beating the odds. It helped that my doctor, who started the Eye Cancer Foundation and its online support group, connected me with someone who had been through the same diagnosis and treatment. I serve on the foundation’s board of directors; I’m involved with developing a tri-state area support network and have been on the patient steering committee for the Community United for Research and Education of Ocular Melanoma.

“Although there is no cure, there is a community that comes together online and in person via annual patient symposiums, 5Ks and luncheons. I’ve formed friendships like no others I’ve ever experienced, and also lost dear friends that have passed away. With ocular melanoma, I’ll have scanning and monitoring for the rest of my life; you’re never in the clear. I don’t know why I’m still here and others are not. I do know that I will never stop educating others, raising funds for research and urging everyone to get an annual comprehensive dilated eye exam by an ophthalmologist.”