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 BRAVA Magazine0512 Meg Gaines   
 
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In the 
Driver's Seat: Darlene Ballweg


Meeting the Challenge

A Life of Spice: Huma Siddiqui

The Guardian: Eileen Mershart

Moving Forward

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Generation Molly

The Joy of Being Mona Melms



Shana Martin is Relentless


Deneen Carmichael: Moving forward
Jenny Wimmer: Racing toward
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Chris Hansen: Embarking on a mission
 A Kindred Spirit: Asia Voight
 As Real As It Gets: Diana Henry
Moving on up: Lisa Madson

 Jennifer Engel Moves Mind, Body And Spirit
The Chancellor is in: Biddy Martin


 

Rebel with a Cause

Seventeen years ago, Meg Gaines was told it was over—she had ovarian cancer and it was going to kill her. She disagreed.

Today, she leads an organization helping patients navigate (and advocate) their way through life-threatening illnesses, while fighting for a better health care system for all

By Jenny Fiore

Photographed by Amber Arnold

Hair by Aaron Pairama of Duncan Edward Salon

Makeup by Kendra Gassner

It wasn’t the malignant ovarian tumor that ruptured during surgery. It wasn’t the resulting pleural emboli or the lung that was punctured and collapsed during catheterization. It wasn’t the cancer that crept into her liver or even the moment her doctor said all hope was lost. What really sent Meg Gaines over the edge—inspiring an emotional outburst that produced a good, strong belly laugh and sent her toppling out of bed—was the suggestion that she might be mentally ill. What else could explain her steady calm? Clearly she’d not understood when the renegade surgeon told her, “We can operate, but your chances of dying on the table are 50-50.”

Gaines, a professor at the University of Wisconsin Law School, was in her late 30s when her gynecologist palpated what was assumed to be a harmless ovarian cyst. When the doctor attempted to surgically remove this cyst—actually a cancerous tumor—it burst.

Hope was fizzling fast, the cancer had moved to her liver in the three chemo-resistant tumors, but the worst was yet to come. By using a type of dye-injection radiography, doctors found that her liver tumors actually numbered 12—at least 12—and told her it was white-flag time: She should focus on the quality instead of the quantity of her remaining days. Gaines’ children were just 3 and 1 years old.

Thus began her self-described Shakespearean odyssey across the country in search of a cure.

“If somebody said to you, ‘Sorry, but you’re gonna actually have to ditch your kids,’ you’d be like an insane, crazed person,” she says.

We’re seated in the second-floor office of the Center for Patient Partnerships (CPP) inside the UW Law School. It’s a space so modest it feels like a converted storage area. A student volunteer has just escorted me to the office by way of squeezing between a file cabinet and a portable fan. This is where Gaines’ odyssey has brought her.

Gaines welcomes me warmly, offering me something to drink and leaning back with her arms behind her head. Instead of being the power-suited lawyer I’d expected, she’s like some khakis-sporting spitfire who looks like she just finished book club. And for all of her eloquence and acumen, she isn’t shy about describing her situation bluntly—a hint of a smile perpetually on her lips as if to say, I’m not bulletproof, but I won’t take any bull.

“I basically was an insane, crazed person,” Gaines says, continuing with her story. “Because I wasn’t leaving my kids…I was gonna do anything. I was at least gonna die trying.”

That was early 1995. Over the next two years, bearing her cancer albatross, Gaines learned volumes about the medical world in which a seriously ill person must exist. She became painfully aware of its endless complexities and how easily things could have ended very differently for her were she short on education, confidence, clout, connections or money.

She, in all likelihood, would have died.

She certainly wouldn’t have crossed the country to find a “buccaneer” surgeon who would open her up, discover that all but one of her liver tumors were normal fatty growths, and successfully remove the cancer. She might have at least quivered when he warned her of the 50-50 chance of dying during that experimental surgery—one he’d performed only twice, on patients who died within three months. Gaines is lucky he even agreed to do it, despite wondering if she was unfit to make the choice.

“My dad told me [the surgeon] asked if I’d ever been treated for mental illness,” she remembers. “He said I just didn’t seem to be getting the seriousness of what he was saying. I just started laughing and laughing. When you’ve been sick for over a year, you haven’t really had one of these laughs, the kind where you’re crying and peeing in your pants. I rolled off the bed onto the nasty floor of [our] hotel.

“I’m practically giddy thinking about dying on his table!” she explains. “Obviously, the guy has never imagined me lying on a bed in my living room, with my children avoiding the room because they can’t stand to look at me, with me in such a morphine haze that I kind of recognize them and kind of don’t. Lying there going from 120 pounds to 110 pounds to 90 pounds until I finally…go.”

This watershed moment is among the many that help Gaines connect, again and again, to the experiences of others now trying to navigate the medical system while gravely ill.

“It was one of the first moments that it really crystalized for me that [health care providers] have such a different thing going on for them,” she says. “What’s going on for [my doctor] is his trial and his funding, and certainly he’s feeling some concern for me—he doesn’t want some bat-shit crazy patient on the table, right?—but he doesn’t at all know what’s going on for me, not even remotely. And, honestly, he doesn’t even want to, because I think if he did, he’d feel overwhelmed.”

But would he have been overwhelmed? Do doctors really have to put up emotional walls as they’re taught to do?

These are the kinds of questions Gaines asks today, 17 years after her diagnosis—and the kind that led her to launch the Center for Patient Partnerships in 2001 after what she calls her “knight and shining armor phase” when her oncologist enlisted her on occasion to inspire other seriously ill patients. She often couldn’t resist interceding on their behalf, one patient and issue at a time.

She knew all too well the complexities they were facing while feeling physically and emotionally ravaged. Eventually she realized that her micro-approach to a macro-problem was not the best use of her passion and skills, and her new mission was born.

“I kept having this recurring daydream,” Gaines explains, remembering back to her diagnosis. “I was floating over my own funeral, listening to people talk about how I’d had so much cancer all over my liver, that I’d lived so long considering that, and what a testament it was to how much I loved my kids and what a testament it was to what a fighter I was.”

Gaines’ eyes blaze, and she shakes her head as her intensity rises.

“I just remember this feeling of wanting to scream and say, ‘No! I didn’t have to die! It didn’t have to happen. I didn’t have cancer all over my liver!’”

Gaines realizes she’s alive today because a lot more than luck played into her favor. Born into a well-to-do family, Gaines had what she describes as an incredible education, which allowed her to then attend law school, which allowed her to develop tenacity and self-esteem. These advantages kept her afloat as she navigated a health system that told her she wasn’t going to make it, and there was no sense in trying. 

“Basically I had the luxury of being able to be a fighter in a system that is completely incomprehensible and like a maze,” she says.

But what helped her develop the qualities and know-how to weave her way through—and around—the system are things she knows are not necessarily available to everyone. That may be why there’s some measure of fury behind her work at the CPP. Gaines won’t stand for a system that favors those with privilege and simply isn’t user-friendly for the seriously ill.

“You feel like they’re trying to find a way to get you on the conveyor belt, on the moving walkway,” she says. “Because as long as you’re off the moving walkway, you’re costing them all kinds of independent decisions they have to make and things that are out of the ordinary. The system wants, above all, for you to get in the system, to be systematized.”

Gaines works full-time and full-throttle at the CPP, which, in a nutshell, strives to empower patients with life-threatening medical conditions. With the support of the CPP, clients are shepherded through the health care system as they learn to be strong self-advocates.

Many of the initial hurdles involve learning the system itself. They receive personalized guidance in managing all the moving parts—clarifying diagnoses and treatment options, making informed medical decisions, gaining access to quality care, and sorting out financial challenges. But the CPP also helps patients face the emotional underside of the ordeal in daily life, teaching them and their families to funnel their energies into tackling manageable challenges.

“There are two big problems [for people facing serious illness],” Gaines says. “One is the terror. It’s just so scary, and fear is such an energy-suck. It doesn’t leave you much room for anything else. We try to get people to breathe and get rhythmic again—back to this plane. It’s hard, but sometimes you can just sort of reach your hand [out] and people will come down.”

The patients she crosses paths with face myriad diagnoses—deadly cancers, organ failure, serious motor vehicle accidents—and usually find their way to CPP through word of mouth. There to greet them is a team of trained graduate students who field inquiries and present the cases to the CPP staff—including Gaines and several other lawyers, medical professionals and more—who determine whether the CPP can be beneficial, either proceeding with a case or guiding the patient down other avenues for help.

The ultimate goal—to help the patients navigate the maze of health care—is simple enough. But CPP also strives to serve a larger mission: to select a small number of cases that could lay the groundwork for broader educational or policy change. Gaines wants to get the players to rethink the playing field.

It starts with her other job—that of professor—where she reaches students studying in fields that touch the lives of the seriously ill (think medicine, law and social work) in classes on consumer issues in health care and patient-centered care. Students are offered opportunities for training and for-credit volunteer work at the CPP—giving them a peek behind the curtain of patients’ lives and the health care system’s status quo. Gaines is also involved in pressing for policy initiatives within health care organizations and on a more public level.

After 11 years of patient advocacy, the results of their work have rippled outward. When the CPP was founded, there was only one other college in the country doing advocacy education at the graduate level. Now numerous education and training programs are flourishing and even professional associations for patient advocates are being established. But the field is still relatively new and needs tending. Continuing its tradition of trailblazing, the CPP recently unveiled national initiatives to that end, offering a new e-learning curriculum as well as formally assessing and documenting the impact of advocacy services.

Gaines hopes the CPP will serve as a national model for groups around the country. 

Some may call it lofty, but Gaines is steadfast, her motivation is her personal experience, a true belief that the system can be better, and a solid respect for caregivers in the medical field. 

Ask who saved her life and she’s quick to give two particular doctors first billing.

“You have to be empathic,” she says. “You’re being taken care of mostly by goodhearted people who don’t themselves want to be treating you like a widget, but they’ve got stuff on their plates, too. It’s both about trying to work with people on the terms of their jobs and situations and surroundings—it is a health care system—while also trying to make sure you get what you need when you need it.” 

The changes come in small steps. Recently a billing employee at a local hospital called Gaines to talk with her about a patient’s insurance claim being unjustly denied. He didn’t feel right about letting it rest and immediately thought of the CPP. Gaines feels that’s a huge step, when solution-seeking and recognition of injustices is coming from within the system itself.

“That’s big,” she says. “That’s when you feel like you’re really making a difference.”

Gaines’ children are now 18 and 21. Having lived to see them grow up is the win that gives her the most joy of all.

“I remember being on my knees next to my bed, praying that I could see my kids start school, just start school. Now? I want to meet my grandchildren, if I get to have any. I want to live to be an old, wise woman. But I already got what I really wanted. This is gravy,” she adds, looking around.

“If somebody said to me tomorrow you’ve been diagnosed again, I would do what was reasonable to try to live,” she continues. “I’m not saying I wouldn’t fight, but boy, I guarantee you on my last day I would say, ‘You kidding me? I got 17 years.’ That’s a crazy, crazy thing for someone who had ovarian cancer in her liver.”

It’s now I realize that the laid-back woman who’d started this interview in repose with her hands behind her head, has been leaning toward me for over an hour, her whole body animated with an incredible range of emotions. Now, this fierce, funny, spirited woman leans back again and quiets. Her hands go back behind her head as she finds words to sum it all up.

“Being able to create something that gives meaning and moment to an experience that changed my life,” she says, “and hopefully tries to ease the burden for others, tries to train people to pile on less of a burden to people that are already suffering? I have no right to ask for anything else, and I don’t feel the need. It’s all gravy now. It’s just a total privilege to do what I do, an unimaginable privilege.”




 


 
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