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Surgery and sisterhood

When she was a little girl, if a bad dream would wake her up in the middle of the night, Julie Murn would pad down the hall of the silent house to her big sister's room. She'd crawl into Kathy's bed, grab hold of her nightgown and hold tight. "Just," she says, "to make sure she was there."

And she always was.

The sisters have been together, one way or another, for as long as either one can remember. Born 18 months apart, they fill page after page of their family's worn albums with impish grins and exuberant poses — familiar pages they revisited recently, sitting knee to knee on Julie's living room sofa, giggling and groaning as steam curled from their coffee mugs.

If Kathy was boss and rule-maker, tomboy Julie happily assumed the role of smitten follower and occasional instigator. They were, from the start, a good team, built to last through backyard fort-building, first-car fender-benders, college in different cities, velvet bridesmaid dresses, kids of their own and, most recently, through what has become their most challenging familial test — realizing that they shared the breast cancer gene.

With that knowledge, the sisters not only drew closer than ever, but decided to embark together into a world most people face entirely alone — one of stark physicians' offices and needle pricks, gurneys and grim phone calls.

They're among a tiny but apparently growing number of people who choose to have surgery together.

"It made sense, going together," says Julie Smith, a 44-year-old mother of two who lives in Baltimore's Roland Park neighborhood. Kathy Murn Drake, who's 46 and an arbitration organizer living in Ellicott City, adds: "It's the big-sister, little-sister thing."
The sisters grew up in Baltimore in the 1960s and '70s, the only children of Elizabeth and Jack Murn. Their affection for one another registers clearly, even in faded snapshots, and especially in the easy way they retell the stories behind the pictures.

There they were, hair chopped into pixie cuts — the time they squished onto a shelf, right above the Crisco, in a cabinet of their mother's kitchen. And there's the puppy — the fluffy thing their parents locked into the powder room for a Christmas surprise-turned-teary when they heard whining behind the door and assumed a holiday elf had been trapped.

They were the girls who played badminton in the street, tailored tissues into Barbie couture and ran shrieking through the grand halls of the Baltimore Museum of Art as if it were their own personal amusement park.

They grew up tall and photogenic, and when they got married — just three months apart — each chose the other as maid of honor. Julie named her little girl Kathleen.

When the sisters were in college, their mother found out she had breast cancer. They don't remember the time particularly vividly. Just a phone call and then some scary moments. It seemed to be over fast. A straightforward lumpectomy followed quietly, some years later, with a full mastectomy after too many more worrisome lumps and cysts.

Julie remembers wondering to herself then if somewhere inside herself she had the courage to make that choice — if she had what it took to answer a vague threat with such a bold, irrevocable, identity-shaking move of defense. "Would I be brave enough to do it?" She wasn't sure.

For 20 years, neither sister thought any more about it.

That's when Julie's doctor, after hearing that her mother and grandmother had breast cancer, urged her to find out if the danger ran in her family. If her mother had the mutated gene known as BRCA1 or BRCA2, it might have been passed to her.

Or Kathy.

Shaken, Julie worked on her mother to be tested for the bad gene. Living in Florida now and fighting lung cancer, her mom required some convincing. But she did eventually go — and the news for her daughters wasn't good.

Here Kathy and Julie might have gone their separate ways — deciding on their own to be tested, or not. But that wasn't their style. Woman-to-woman moral support was. Together they wrestled with the idea of knowing. What would they do with potentially life-changing information? Living in uneasy ignorance didn't sound like a great option either.

Fortitude won. And Julie made a March appointment for two.

As vibrant, still-young women who lived more or less the blameless, low-fat, smoke-free, athletic-shoe lives they were told they should, as upsetting as all of this was, the sisters still considered themselves healthy and — in a way — safe. This sort of trouble happened to other people.

That was until they walked into the genetic counselor's office — in the cancer wing of Sinai Hospital. "When you realize you are meeting with a counselor in a cancer center," she says, "the potential seriousness of the situation sinks in quickly." Even more so when she started rattling off the sickening statistics for those with this sort of flawed DNA — 85 percent more likely to get breast cancer, 45 percent more likely to contract cancer of the ovaries — Kathy didn't need to hear much more.

She blurted out: "I need to know. Can you test us today? I just can't wait."

Julie had been ready to walk out the door. But there they were, at what was supposed to be just a consultation, rolling up their sleeves and grimacing as their blood filled lab vials.

"My sister was like, 'I'm just going to do it, I'm here,'" says Julie. "I was like, 'You are? OK. I'll do it too.'"

The results came weeks later. Julie put down the phone and started to cry. "She called me after she heard," Kathy says. "She said, 'I have it, do you?' I said, 'I do.' We both said if it had to be one, we were glad it was both of us."

Together they presented their genetic dilemma to one doctor and then another and then another, trying to get a sense of their options. But from every last one of them, they heard the exact same words. Remove your ovaries.

Again, Julie wasn't ready. Her family had just endured a brutal bout with disease, her son's pancreatic cancer, and she wanted to wait and be tested in the fall. A tranquil summer to catch her breath was all she wanted. Plus, she thought, "I'm only 43."

But Kathy couldn't live with the risk. The implications of early menopause unnerved her, but not as much as doing nothing.

"I felt," she says, "like we were ticking time bombs."

When they were little, playing hide-and-seek in the museum or building make-believe backyard worlds, Julie might suggest the games, but big sister Kathy set the rules. Forty years later, that sisterly dynamic held. Julie had the foresight to realize their genetic lottery, but if not for Kathy, they might not have done anything about it.

After one of the appointments, they settled down at a table and talked quietly over a long lunch about, as Kathy puts it, "how much this sucked." They laughed a little about how unbearable they might be, going through menopause together and decided to have surgery on the same day. They could change into those awful hospital gowns together and when the anesthesia wore off, they'd wake up in the same room, just like when they were little.

"We would have never wished this on each other," Julie says. "But there was some comfort in knowing that we would go through this journey together."

They told Dr. Amanda Nickles Fader, a surgeon at Greater Baltimore Medical Center who specializes in gynecological malignancies, to book an operating room on May 17. Kathy would be the 7 a.m. appointment and Julie would take the 10 o' clock — easy, outpatient operations that should only take a couple of hours.

Kathy's went just like that, as Nickles Fader cut a dime-sized incision in her belly button and removed her ovaries, fallopian tubes and uterus.

Julie wasn't so lucky.

Shortly before the operation, the surgeon saw Julie's pre-operative blood work and the cancer indicators lit up like a fireworks display. Julie's ovaries were riddled with tumors, and malignant cells had already spread to nearby organs.

Stage three ovarian cancer. It was so far along that if the sisters had held off on surgery — as Julie wanted to —it could have been too late.

Having a bossy big sister along for this ride probably saved Julie's life.

"They encouraged each other," says Nickles Fader. "Nobody but the two of them knew what each other was going through. I think it brought them closer and helped them cope."

Though it's still quite rare for people to plan surgeries together, it's something hospitals are seeing more of with the prevalence of optional procedures — things like cosmetic surgery, weight loss operations and, like the sisters, people who decide to have their ovaries or breasts removed as a precaution after learning they have the breast cancer gene.

Nickles Fader has seen it before. While she was working at the Cleveland Clinic before moving to Baltimore, she had as many as three family members come in at a time for consultations. And one of her colleagues worked with sisters who, like Julie and Kathy, wanted hysterectomies on the same day.

The surgeon wouldn't recommend simultaneous operations for just anyone. But seeing how it worked for Julie and Kathy, she knows it's right for some.

Julie spent the summer and fall recovering from her much-more-intense operation and a rough course of chemotherapy. Kathy helped set up a website where she and her sister's friends could sign up to bring dinners for Julie's family and drive her to appointments.

In September the two got a team together for an ovarian cancer walk in Annapolis, raising thousands of dollars. They'll spend the winter looking forward to the June U2 concert in Baltimore for which they've already bought tickets.

They're both thinking about mastectomies.

"The whole thing has been very emotional and hard," Kathy says. "We both hope and pray that this will be something we look back on 10 years from now and say, 'Phew, wasn't that something.'"

Source: By Jill Rosen, The Baltimore Sun

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