There are over 11 million cancer survivors in the United States today; each with their own unique story. Experiences with the ups and downs of treatment, moments of celebration, personal growth, pain and humor. We want to share stories; for only those who make this trek, truly understand what it means to be a survivor. We hope these stories will educate, inform, and strike some resonating chord within you. To share your story with our community, please email us at info@neccs.org.
Survivor Lynne Morin
When you first meet Lynne Graziano-Morin, you would never suspect that this doe-eyed beauty is a double cancer survivor who lives with chronic pain. Her smile is so bright, and her laughter so contagious, that it is a long time before you notice the bottle of pain medication which is her constant companion. Lynne, a board member of NECCS and the Director of Survivorship Outreach for the New England Division of the American Cancer Society, is eminently qualified for her job. The story of her survivorship is astounding. In October of 1969, when Lynne was just sixteen months old, she was diagnosed with neuroblastoma, a childhood cancer of the nervous system, and was given only three to six months to live. She was treated with surgery, chemotherapy-- and radiation at a time when this therapy was still in clinical trials.
Thanks to the efforts of a skilled medical team, and the strong faith and dedication of her mom, baby Lynne beat the odds. She thrived and survived.
Despite this early threat to her life, Lynne wasn't home free. At thirteen years of age, she began to experience chronic pain in her right leg. Initially, her doctors were unable to find its cause. "They actually told my mother that I was seeking extra attention and might need a psychiatrist," she says.
Fortunately, Lynne was blessed with a persistent mom who stayed focused on her child's pain which was indeed very real. After two months and nine second opinions, mother and daughter received the shocking diagnosis of bone cancer.
"The doctors wanted to amputate my right leg and told my mother once again, that I had three to six months to live. Three to six months seems to be the theme with me for some reason.... Obviously, the doctors were wrong both times." Rather than amputating Lynne's leg from the hip down, a physician who was a pioneer in the field of bone grafting, removed her ileum and replaced it with a graft.
However, when the graft became infected, it had to be removed, and Lynne was told that she would never walk again without the aid of crutches. But once more, the determined teenager beat the odds. Not only did she survive this second cancer, but a few months later she was walking. "I pushed and pushed myself, and today I'm walking without the aid of crutches or a cane.... I'm alive to tell this story, and I still have my leg!"
Since Lynne was a typical teenager who longed to fit in with her peers, it wasn't easy for her to come to terms with being a double cancer survivor. In fact, she recalls being embarrassed and ashamed of her cancer ordeal.
Because she limped, it was difficult to hide the fact that something was wrong. "I used to create all these wonderful stories," she says. "I blamed my limp on everything from a moped accident, to water skiing, to a snow skiing catastrophe. It wasn't until I went to college that I started to realize that being a cancer survivor was not only something amazing, but something to celebrate publicly."
Lynne reminisces about the early years of her survivorship. "Back then, the cancer survivorship movement didn't exist," she explains. "The medical community didn't help you become a cancer survivor. You were not encouraged to become an active participant in your treatment, nor was there any discussion about the positive impact of cancer survivorship on your life."
So Lynne's approach to survivorship had to be intuitive and she takes great pride in the fact that she was always "a difficult" patient.
"I needed to know everything, to understand the reasoning behind everything my medical team was doing.... As a teenager, I had permission to read my own charts when adult patients wouldn't even think of doing such a thing!"
Lynne's proactive approach to her illness and treatments placed her squarely at the forefront of the cancer survivorship movement. Today, Lynne is happily married and is the stepmother of Stephanie who is ten and Timothy who is nine.
"If you asked me fifteen years ago if I ever thought I would be married and have children, I would have said, 'No way!' I can't physically have children, so I thought nobody would ever want to marry me."
But when her husband Steven came into her life, she fell in love with him instantly. "I just knew he was the one- and I wasn't afraid to tell him I was a cancer survivor. He's very, very supportive of me."
Clearly, both personally and professionally, Lynne is a busy, fulfilled individual. Although her overall health is excellent, she must contend with the "late effects" of the very childhood treatments that saved her life.
Chief among these is chronic pain. "For a long time, I felt very guilty if I cried, was having a bad day pain-wise, or needed extra help at the hospital. I was very upset that I had to go to a pain clinic and take painkillers because I couldn't handle the pain on my own. I felt I was letting everyone down because I'd always excelled at the role of 'the patient who's beating the odds'."
The pressure of being a tower of strength for everyone else was often overwhelming and Lynne soon learned an important lesson of survivorship. "I'm only human," she says. "I can't be positive 24 hours a day, 7 days a week. When I need to take a day for myself to just lay in front of the TV and relax, then I do it. It's okay to have a bad day, to acknowledge it, kick back, and then move on."
Over the years of her survivorship, Lynne has learned many other important lessons. She shares these with other cancer survivors in her professional life, in her volunteer work, and on the Cancer Survivors Network.
She is a veteran survivor and a skilled storyteller who is wise in the ways of survivorship. And she is on a very important mission.
Lynne wants to empower fellow cancer patients/survivors (and their family members) by challenging them to become active participants in their care and in the political arena. She wants them to join the cancer survivorship movement. "There are over 8 million survivors in the United States alone," she says. "We have a voice-- a loud voice. We can work together to make a difference in our ongoing care."