Marie LePage of Cincinnati is the children's librarian at Boone County Library. Kids know her as "Miss Marie." LePage has been battling oral cancer for the past eight years and next week she will have her tongue removed. She'll no longer be able to do what she loves - telling stories and singing to children.(Photo: Liz Dufour, The Cincinnati Enquirer)
CINCINNATI -- For Marie LePage, words have been a way of life.
She loves the sound of them, the feel of forming them in her mouth, the power of using them, the joy of collecting them. The best part of her job in children's programming at the Boone County, Ky., Public Library is settling a 3-year-old in her lap and reading a great story. She is wickedly good at repartee with her husband of 18 years and her teenage daughters. And before she stands before her congregation to read scripture as a lector at St. Anthony Catholic Church, she prays, "Set me aside and use me to speak to the hearts of your people."
But after Friday, Marie knows she will have to reach their hearts in a different way.
An eight-hour surgery called a glossectomy will remove the 50-year-old Cincinnati resident's tongue after an eight-year battle with oral cancer.
It has meant the sacrifice of her salivary glands, mastoid muscle, lymph glands, part of her jaw and a number of teeth.
Now she must sacrifice her words.
"It means I can't be Miss Marie, the story lady in the library, and I will mourn that," she says, with diction for which she must work hard after more than 30 surgeries and procedures. "It means I can't just chat with my friends or with strangers – and I love to talk to strangers. With therapy, I may be able to speak some in the future, but it won't be freely. I can't just talk spontaneously. People won't get my subtleties."
After Friday, she says, "my life is going to change completely."
But even as she says it, she knows it is not entirely true. For all that cancer has taken from her, it has left something in return. The knowledge that a person is more than the sum of her parts. That the human spirit can triumph even as the body suffers. That "voice" is more than the mechanics of producing a sound.
And that the greater tragedy than not having the ability to tell people what they mean to you is having the ability ... but saying nothing.
So for the next five days Marie will say as many I-love-yous, thank-yous and I'm-proud-of-yous as she can fit in. She will record some of her favorite phrases and a few special songs for her husband, Jesse, and daughters Kaia, 15, and Anna, 13. She will read aloud even if there is no one to hear her.
And she will savor her favorite foods, knowing it may be the last time she'll ever taste them. Only a minority of patients who undergo her surgery are able to eat. Even if she learns to swallow again, a feeding tube into her stomach is likely a permanent part of her life.
But even if she can't eat, she will continue to cook for her family. She has also guaranteed her daughters she will find a way to yell at them. And while she will no longer be able to read to children when she returns to her job in three to six months, she can still plan story times, write grants and create programs.
Marie LePage may not have understood what she faced when diagnosed with oral cancer, but cancer had no idea what it was taking on in Marie LePage.
She may be losing her ease with words, but she has found the strength of her voice.
She knew it at her first visit to a specialist who, when she offered a comment, told her not to interrupt him. "He said, 'We're going to have a long relationship,' and I thought, 'No, we're not.' I never went back again," she says.
Since then, she has become an advocate not only for her own health, but that of others. She wants people to know that the incidence of oral cancer is increasing faster than that of any other cancer and that it's occurring in younger patients, even lifetime nonsmokers like her.
"Pay attention to what's going on in your mouth – if there's a bump or sore that doesn't go away in two weeks, get it checked," she says. Her first sign of the disease was what she thought were simply canker sores.
She's a strong advocate for giving young people the vaccine for the human papillomavirus, which has been linked to some oral cancers.
And she says no one should go through cancer treatment alone – one of the reasons she is a founding member of the Strange Cancer Supper Club. Criteria for membership is a rare or early-onset form of the disease. Dinnertime conversation touches on radiation and recurrence rates, but turns quickly to humor, faith or family.
Its members are wise enough to know that no human being has an unlimited amount of time to speak.
Marie hopes that her struggle will help others to use their time well.
"Please tell people you love them. Tell them you're proud of them. Say thank you for everything, even if no one's around. If a bird lands on a flower at just the right moment, say thank you to God. Read a story to your kids. Read a story to your husband. Read stories to anyone. And listen – there are people who have a voice but don't have anyone to hear them."
She stops at the door as she's leaving the restaurant where she was interviewed and circles her hand in a good-bye wave.
"Celebrate everything," she says.
