How does somebody fight a one-in-a-million genetic disorder that makes a new cancer diagnosis almost as common as an annual bout with the flu?
Lainie Jones does it with grit, courage and plenty of humor.
"Oh, the joys of having veins like a heroin addict," Jones, 29, titled a post on her blog.
For the past five years, Jones' life has been a never-ending series of pokes, prods and doctor visits. She has fought breast cancer twice, thyroid cancer twice and melanoma. She has had a double mastectomy and a hysterectomy. She has undergone three rounds of chemotherapy and 38 rounds of radiation treatment.
Before her wedding last year, her fiance helped shear off her hair — before it could fall out from chemo.
This is what life is like when you have Li Fraumeni syndrome, a defect that makes sufferers prone to cancer. There are only 400 documented cases in the United States, about 1,000 worldwide.
"My thought when I found out was: I could win the lottery," said Jones (nee Schultz), of Fort Lauderdale.
I met Jones last week, when we served together on a judging panel at a Broward Health employee competition. Her story — and her enthusiasm — captivated me.
"I want to let people know that you can live with cancer — that it's a manageable disease," she said.
She had her first cancer as an 18-month-old, when she had abnormally greasy skin and showed signs of starting puberty. "I had the hormone level of a 50-year-old woman," she said. She was diagnosed with adrenal cancer, and doctors removed a tumor.
She remained healthy until her mid-20s. Then came breast cancer at 24, skin cancer at 25, thyroid cancer at 26. Her doctors at Broward Health suggested she go to the MD Anderson Cancer Center in Houston, and tests revealed the genetic disorder. When she had recurrences the last two years, she quipped on her blog that "this cancer thing is so obsessed with me, I might have to put a restraining order on it."
Her latest scans came up clean, so she considers herself cancer free for now. She'll take preventative drugs for the rest of her life.
She has started working part-time, and wants to start a family (either through adoption or surrogacy). She is thankful to have found love. She met Joseph Jones nine years ago when they worked at a clothing store. He didn't bolt when she got sick.
He proposed at Epcot in 2011, and they wed in March 2012.
"He told me he really married me the day I was first diagnosed," Lainie said. "He said he was always going to be by my side."
Their "honeymoon trip" was to a Coral Springs chemo clinic.
Next month, Lainie and Joseph will go to California to see a taping of Ellen DeGeneres' talk show. Lainie's fantasy: To have Ellen learn of their story and bestow a real honeymoon.
Wouldn't it be nice if dreams came true?
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