By DiMarkco Chandler:
Rosie O’Donnell stoically announced on her blog Friday that her fiancée Michelle Rounds has been diagnosed with a rare disease. The 50-year-old talk-show entertainer broke the news with a moving poem describing the couples difficult journey as a diagnosis of desmoid tumors.
Her first two stanzas described the “pure bliss” of a pre-wedding road trip that stretched from Malibu to Big Sur and up to California’s wine country.
“Then blink – it begins on mothers day morning pain that won’t let up,” she wrote.
She described a “maze of medical mystery” that left them “confused,” “scared” and searching for answers.
“Undiagnosed – again and again her pain grew worse it seemed impossible no one knew what was wrong,” she wrote. “Life changes in an instant.”
She called the desmoid tumors “odd and curious beasts strong and sneaky,” describing them as a “non cancer that acts cancerous.”
Citing statistics from the New York-based Desmoid Tumor Research Foundation, she said the rare disease strikes about 900 times per year in the U.S., affecting only 3 people out of every million.
“Michelle is one of them,” she wrote.
O’Donnell said her fiancé is recovering from surgery in June and “getting stronger every day.”
She said the wedding was postponed to next summer and asked for prayers and donations to the DTRF.
She ended with an intimate snapshot in which Rounds smiles and leans her long blond locks over O’Donnell’s shoulder.
“It’s a scary, scary thing to be diagnosed with a rare disease. And this disease can be devastating because it has a high recurrence rate,” Marlene Portnoy, executive director of the Desmoid Tumor Research Foundation, told the Daily News.
Portnoy said the tumors arise from connective tissue and are “locally aggressive,” making them particularly painful and tricky.
They don’t metastasize, unlike most cancer cells, but they’re treated with radiation, chemotherapy and surgery – and they can be fatal, she said.
“The outcomes are all over the board,” she said, declining to speak about Rounds’ case though she knows the couple. “There’s no established protocol and very little research. Many doctors have never seen them before. It’s frightening.”
She said her group “really appreciated” O’Donnell’s call for donations.
The couple went public with their romance in September 2011 on a red carpet in New York.
The former talk show host, who has four children with ex-wife Kelli Carpenter, told ABC’s Nightline that her “gadar was way off!” when she met Rounds in a Starbucks earlier that summer.
“I thought she was a 28-year-old heterosexual girl, because that’s what she looked like to me. And she’s a 40-year-old gay woman,” she said.
“I think if I had known that she was gay, I wouldn’t have been brave enough to talk to her,” she said. “She’s very beautiful, it’s very strange. And she’s really lovely… we laugh a lot.
Last December, O’Donnell posted a Twitter photo showing Rounds wearing what appeared to be an engagement ring. Three days later she tweeted a clear image of the ring with the caption, “so so so happy.”
Desmoid tumors low-grade fibrosarcomas, but they are very locally aggressive and tend to recur even after complete resection. There is a tendency for recurrence in the setting of prior surgery; in one study, two-thirds of patients with desmoid tumors had a history of prior abdominal surgery.
While the decease is painful current experimental studies are being done with Gleevec for treatment of desmoid tumors, and show promising success rates
The Guardian prays for Michelle’s full recovery.