Heidi Gottlieb is on a mission - one that will take her across New London County next week, one step at a time.
If you see a tall, lean female with brown hair, striding purposefully along Route 1, perhaps alone, perhaps with a group and a film crew, most likely it will be Gottlieb, founder and director of Brain Matters, a non-profit advocacy organization to raise public awareness of brain tumors.
A brain cancer survivor, Gottlieb left her home in Port Washington, on Long Island, Oct. 1. On Nov. 1, she plans to arrive at Mass General Hospital in Boston, where in 2007 and 2008 she received proton radiation therapy that has arrested the growth of her tumor. Hospital staff, friends and fans will be waiting for her.
Her 250-mile walk is both a celebration and advocacy effort. She hopes people will come out to meet or walk with her, support the cause and become more aware of the need for better screening and more research for cures. A film producer, she plans to create a short documentary for schools and organizations.
Brain tumors are the second-leading cause of cancer-related deaths among children under the age of 20 and in males up to age 39, according to Gottlieb, and the fifth-leading cause of cancer-related deaths among women ages 20 to 39. Recent studies have linked a causal relationship of cell phone use and some kinds of brain cancer.
There are at least 120 different kinds, either primary, that originate in the brain, or secondary (metastic), caused by cancer cells that migrate from elsewhere in the body. Either way, the survival statistics are grim: 77 percent of cancerous brain tumor patients will die of the tumor or complications related to it. Benign tumors can be just as deadly.
"I don't think people really know how much of a need there is to raise funds for brain tumor research and detection technology," says Gottlieb. Given that only 1 out of 3 adults diagnosed with malignant brain tumor today will be alive in five years, she knows how fortunate she is to make her walk.
About 21 years ago, Gottlieb woke up with double vision. The diagnosis: a benign brain tumor, eosinophillic granuloma, most common in children. She and her husband, Jon, had a 1-year-old baby. Surgery to remove the tumor and radiation resulted in temporary facial paralysis and permanent hearing loss in one ear.
She learned to swallow and speak again, and went on with her life, having a second child and continuing her career. Since yearly MRI checks seemed okay, her occasional headaches, dizziness and flashing lights were chalked up to stresses of a busy life.
But in 2007, when she experienced more symptoms, a new neurologist realized her tumor had doubled in size. Doctors determined she had been living instead with a chondrosarcoma, a slow-growing, cancerous, skull-based bone tumor. It was inoperable, but she had heard of proton radiation therapy. She sought treatment at Mass General's Francis H. Burr Proton Center.
Gottlieb's blog and other details of her journey are posted on the Brain Matters website, www.brain-matters.org. Friends and volunteers are helping to reduce her travel expenses by finding her homes to stay in, shuttling her luggage and equipment and filming segments of the walk.
"I'd hoped to be able to stop and talk at more schools along the way," says Gottlieb, who has been juggling all of the scheduling and filming, as well as the walking. "But it just got too complicated. So I hope once I produce the film that I can go on the road to talk with students."
Come Wednesday, Gottlieb plans to walk through Westbrook, Old Saybrook and Old Lyme, ending in Laysville. She'll head further into southeatern Connecticut Thursday. Gottlieb's walking schedule and itinerary are on the website too. Click on "Walking Miles 4 Brain Matters" for online walker registration and donation information.