What's up with Heather??? DNA sucks sometimes.

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Facing Fatal GenesNorthwest families and scientists are combating DNA defects to keep women at high risk of breast and ovarian cancer from ever getting the disease.
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The Boulanger Curse
Four Oregon sisters wage war against a gene mutation that puts them face to face with the cancer that killed their mother and threatens their daughters and sons
By Julie Sullivan

The Oregonian


Heather Boulanger Christian winced, chest aching. Eleven days after surgery, she pulled a sweat shirt over her bathrobe, slipped on Crocs and stepped bare-legged through Grants Pass snowdrifts to reach a family baby shower.

Audio Slideshow - Heather Christian talks about why she chose surgery and shares her experience with it. WARNING: This slideshow contains some graphic content. Heather Christian says she shared her story with The Oregonian to help others. You can email her directly about her experiences at heatherbchristian@gmail.com A message from Heather:
Pacifier-shaped balloons bobbed as sisters, aunts and cousins celebrated the latest Boulanger baby girl.
Heather, better than most, knew just what that meant.
After the gifts, Heather willed herself to her feet and drew five nieces into a bedroom. She opened her robe.

Two incisions sliced the pale skin where her breasts used to be. Black thread pulled the puckered skin tight. Under each arm, bloody fluid pulsed through drain tubes into small canteens tucked into her waistband.
"This," she said, "is what you need to know."
Every family propels its peculiarities forward. The DNA that delivered them red hair, porcelain skin and statuesque shapes also carried a defect, like a mistyped password or a misdialed call. The mutation could cause other cells to grow out of control, causing cancer. Who carried it was random. When it became obvious, through tumors, was unknown. But long before scientists identified the breast-cancer gene, Heather and her sisters were convinced that a malevolent force was at work in their family: The Boulanger Curse
—
To be a Boulanger means there are just four hours and 20 minutes between a call for help and a sister at the door - the drive time between Heather Christian and Hope Sonney in Grants Pass and Kim White in Molalla and Bonne Anson in Vancouver.
"We are," Kim, the eldest, says, "all we've got."
Cancer had killed their grandmother and was claiming a young aunt when their mother was diagnosed with ovarian cancer at 44. By 45, the vivacious Bonne Boulanger was dead.
Heather recapped the sad history at every doctor visit only to be reassured that cancer was caused by many genes interacting with many environmental factors.
Then in 1991, Heather's small-town doctor handed her research upending that notion. Scientists at the University of California at Berkeley had in 1990 located a gene for early breast cancer. They'd studied 23 families rife with the disease - including one family from Fort Bragg, Calif., where Heather then lived. A second study confirmed the link to ovarian cancer.
The exact gene had not yet been identified, and no test yet existed, but Heather's doctor urged her to have her ovaries removed. Heather carried the news to her sisters, ages 21 to 34.
All were married, all with children. Surgery would end their childbearing and thrust them into early menopause and the roller coaster of hormone replacement. But memories of illness travel through families like wedding photos and Grandma's china, from generation to generation. The Boulanger girls recalled not only the bunk beds and Black Angus cows of their Grants Pass girlhood, but also hospital beds in the living room, black vomit, the death rattle.
One by one, each had her last baby and then a hysterectomy.
Thirteen years later, on Memorial Day weekend 2005, Kim felt a lump in her right breast. She dropped to the tub's edge and cried. "I thought," she said, "that we'd saved ourselves."
—
Every other week, Heather left her husband, four teenagers and nursery of puppies to take her sister to chemotherapy, a three-day ordeal wrapped around a 10-hour drive. "If it had been 100 hours," her husband David said, "Heather would still go."
Heather was the fixer. She covered debts, settled fights and launched the "gimme" - when a family member was guaranteed one special favor a year. She moved her dad into their home when the senior Boulanger became severely ill from diabetes.
She carried two cell phones, juggling calls about her latest Chihuahua or Pomeranian puppies, available 24/7, talking up to four hours a day. "You buy a dog, you buy a piece of Heather," her sisters would say. She had her own style, too: athletic shorts paired with the flashiest rhinestone bracelets and rings. Her personality was equally sparkly. When chemotherapy nurses limited her to five-minute visits, Heather befriended other patients so she could stay near Kim.
"There's rules," she'd say, "and then there's Boulanger rules."
Kim, who works the customer service desk at the Oregon City Fred Meyer, had already had one breast removed when her oncologist ordered a genetic test to determine the next step. Only about 10 percent of breast cancer is inherited, but for those people it greatly increased not only the risk of breast cancer at a young age but also of having it in both breasts. Kim had a simple blood test, and the sisters drove together to a Portland geneticist to hear the results.
Kim had the gene mutation. The BRCA1. The most common breast cancer gene mutation.
She wept, unable to ask a single question. With three children, she felt "like I've passed along this death sentence."
But Heather, dry-eyed, fired questions.
She learned that all the sisters and their one brother should be tested. If they had the defect, each of their children had a 50-50 chance and should be tested, too - even the boys, who had an increased risk of prostate cancer and could pass the mutation to their daughters.
But what if she didn't? Could she live with the guilt? The randomness?
One by one, Heather and her sisters were tested.
All had it.
"We're four sisters with totally different lives, eating habits, exercise habits and way of life, and it still got us," Heather said.

The Boulanger Curse.

From the moment Heather knew her results, she called her sisters to discuss having their breasts removed. Some people relied on more frequent mammograms or preventative medicine such as tamoxofen. Surgery, though, would cut their risk from 87 percent to about 5 percent. "We are going to war," Heather said. "We're going to do whatever we need to be around for one another."
She found Dr. Arpana Naik, who directs the Breast Center at Oregon Health & Science University. A surgical oncologist, Naik's entire focus was breast diseases, including women at high risk of breast cancer. Naik and her nurse coordinator, Martha McInnes (of Ask Martha fame), were, Heather said, "the first people who didn't think I was crazy."
David was not so sure. His wife of 20 years was planning a double mastectomy without ever talking to him.
"It's my body," she recalls saying.
"It affects both of us and the family as a whole," he said. "It's not like breaking your foot. I just want to be sure you're thinking clearly and not just in 'My-family-has-cancer mode.'"
The lone brother in the family, Tom Boulanger, had no plans to be tested and thought his three sisters were overreacting. "I think it's insane," he said. "I can't imagine putting myself under that to prevent something that may never happen."
The men also worried that there was peer pressure at work.
But Heather was sure. Kim's cancer returned them to their mother's final days. Heather was 44, the same age her mother had been when she was diagnosed. Bonne Boulanger "rocked as a grandma," but she didn't live long enough to know most of her grandkids. "I want to know my grandkids," Heather said.
David agreed. "We would have arrived at exactly the same place," David recalls saying. "But I just wish you had talked to me."
On Jan. 15, he left Albertsons in Grants Pass, where he is assistant store director, to drive Heather north.
She had spent her "last days with my boobs," making to-do lists for her children and having long glittery "cancer pink" fingernails applied, a rare treat not usually allowed by her work. Her children gave her a farewell card that read: "Happy Retirement to your knockers." "You are the toughest woman I know," her 19-year-old son Cody wrote.
Just after 7 a.m. on Jan. 16, Naik surgically removed the breast tissue and several lymph nodes to ensure no cancer was present. Heather would need breast exams every six months for the rest of her life because some microscopic breast cells remained. Dr. Reid Mueller, a plastic surgeon at OHSU, placed an expander under Heather's chest muscle, the first step in reconstruction.
Heather wasn't fully sold on implants, but her insurance required it be done at the time of surgery, and she didn't want regrets later.
When she woke up, David was waiting.
She peeked under her hospital gown.
"I'm so glad I did this."
—
Serina Wilson wrung out a cool washcloth and placed it over Heather's throbbing head. She had left her 3-year-old daughter in Grants Pass and come to Portland with her husband to help her aunt. She planned to return in two weeks for her mother, Hope's, surgery and again in June for aunt Bonne, a school bus driver. At 25, Serina was the next generation's fixer.
The sisters had descended into Heather's room, circling everything on the dinner menu, then calling out for pizza, too. Heather had made elaborate individualized silver charm bracelets to mark the surgeries. The sisters studied theirs: "In Memory of My Mother" and "High Maintenance."
"High maintenance? That's not me!" Bonne said. "That's Hope."
"Brat," Hope said.
The sisters were, Serina knew, "terminally unique." They carried big personalities and tiny dogs, frequently in costumes. They were closer than any family she knew. "I don't have a cell phone because the aunts would call 500 times and say, "Where are you?" she said. As a teenager, Serina and her cousins had died from embarrassment at their aunts' lack of self-consciousness. Her mother, who had nine children, would leap out of a car to stop a fistfight. She stopped an abusive parent in a grocery store by asking, "Excuse me, do you know there are parenting classes you can take?"
Hope told the surgeons, "Just make mine perkier than Heather's."
"Mother!" Serina said.
"You guys are hilarious," Naik said, laughing.
Serina wasn't laughing. The sisters' experience had convinced their brother, Tom, to be tested after all. Two cousins had already undergone testing - both negative. But Serina was still worried. Mastectomy, with the pain and change in appearance, terrified her. She wasn't done having babies. And what if Jadin, her beautiful, redheaded daughter who looked so much like these women, carried the gene?
Serina couldn't imagine fighting so hard to live. Except, she would.
The sisters had taught her how.
She was a Boulanger. With all the weakness that carried — and all the strength.

Julie Sullivan: 503-221-8068; juliesullivan@news.oregonian.com