An active role

Family learns to move on, even when pain's a constant

"Back off, I'll take you on. Headstrong, to take on anyone. I know that you were wrong. And this is not where you belong."

— Trapt, "Headstrong," from Illinois Shotokan Karate video

Scott McKibbin and Jon Dopkeen logged so many hours, working together, their wives branded the partnership their "other marriage."

But when Scott's goal is to change the face of health care in America, and he feels responsible for the lives of Illinois residents, it helps to have a best friend who complements his strengths.

Growing up in west Los Angeles, Scott dreamed of piloting a 747 airliner during long flights to visit his grandparents in New York. He was grounded by poor eyesight. That didn't stop him, though, from joining the Air Force ROTC as a student at California State University, Long Beach, where he dabbled in theater, business and aerospace studies. Ultimately, though, he started out selling life, disability and health insurance.

Those years spent piling 35,000 miles on his car and working on commission opened the door to a career in health benefits consulting, first with the Hay Group, which brought McKibbin to Chicago and introduced him to Dopkeen. The two were young then, and flush from billing clients $350 an hour. They were also nothing alike, Dopkeen says. He was a liberal Democrat; McKibbin a Republican. But they found common ground collectively bargaining for health benefits for Chicago school district employees and Cook County employees, among others.

"Consulting was kind of fun because you get to tell people what to do and they pay you for it," Scott says. "Saving taxpayers money is what gave me a kick. I was the same person I was saving money for."

As McKibbin and Dopkeen moved on, their divergent paths would end up looping back toward one another again and again, with The Segal Co., then Health Management Associates. Scott handled accounts with municipal and state governments, then out-of-state programs, then federal programs like Medicaid and the Clinton health care plan.

Kidney cancer pulled the rug out from under Scott's towering ambitions in October 2001. Two surgeries in 10 months laid him flat on his back. Nerve damage, a complication of his first surgery, saddled him with chronic pain.

"Consulting is a pretty grueling lifestyle," he says. "They want you to bill x number of hours per year, bring in y revenue. If you can't do that, they don't want you to be around."

Scott and his wife, Barb, were suddenly wrapped in layers of questions they never thought of answering. Should Scott file for permanent disability at 39? He didn't even like taking sick days; on vacations, he was always squeezing in work. Could they clear the financial hurdle? Would Barb go to work? Once out of the work force, would Scott be able to ever resume his career?

"Help me here, God," Scott remembers praying. "Give me some clear direction. I don't want to do the wrong thing. I also don't want to be stubborn about this. I don't want to not do it because I've got too much pride."

When Scott met with his doctor, the disability form was signed and in his bag, awaiting the doctor's OK. They talked instead — about patients who drive themselves crazy with inactivity, about all that empty time to think about decline and death. He couldn't go through with it. Barb wouldn't speak to him for days. But that decision was entirely in character, says Dopkeen, who is working with Scott again as assistant director of the Illinois Department of Public Health.

"Scott has always been very proud of his work," he says. "And I think the fact that he really doesn't know what the prognosis is, how long he can work, while it's not an all-consuming factor I think it drives him to accomplish what he's accomplishing. He firmly believes in what he's doing and he knows how important it is."

Managing pain
Christmas Day, 2001. It's been several weeks since Scott's first surgery to remove tumors from his left kidney and he's been recuperating at his Naperville home. Tonight, he's playing cards.

When a card falls to the floor, Scott bends down to pick it up and before he knows it, he's on the floor, too. The simple motion of stooping to lift an object that weighs less than an ounce has popped his surgical sutures, causing his kidney to herniate through his abdominal wall.

The next day, he calls his doctor, who prescribes Vicodin. It's Scott's first initiation to what researchers call the pain triangle. Pain brings on fatigue, he explains, so you treat it with drugs that help you sleep. If you can't sleep, you can become depressed, so they treat that, too. The fluctuation is enough to send Scott through anxiety, helplessness, anger, frustration — the whole cycle.

"Even though the tumor was there before my surgery, there were no symptoms, no outward signs," he says. "In some ways the cure sometimes seems worse than the disease."

Most daysnow, the pain wakes Scott up. He feels it all along his left side. His first trip of the day is to the bathroom. A side effect of the powerful narcotics Scott takes is constipation, so a simple bowel movement can be painful, bringing on bleeding and hemorrhoids. The day's first drug is Miralax, a powder laxative, mixed into Scott's morning coffee. He doesn't even taste it anymore.

The drug that keeps Scott functioning is OxyContin, an opium derivative prescribed for chronic pain patients or those in the end stages of fatal illnesses. The pill has a time-release effect, distributing itself through the bloodstream over 12 hours. Scott divides his daily intake into doses of 40 milligrams in the morning, 40 milligrams at lunch and 40 milligrams at night. If his pain spikes, he'll pop a 10 milligram tablet.

"There's a reason you break it up," he says. "If I take too much, among other problems is it will cause respiratory arrest. You can kill yourself."

OxyContin is the latest iteration of Scott's evolving drug cocktail. He dumped methadone after it made him mean. The antidepressant Elavil causes drowsiness, so he pops 75 milligrams before bed as needed, but not during the day. He switched from over-the-counter laxatives after damage to his colon.

The number that defines Scott's day isn't his dosage, but his pain score. Pain is self-reported by patients on a scale of 1 to 10, he says. He tries to keep his score between 2 and 5. Anything more than that and his energy begins to drain, he'll have trouble walking. During a trip to West Virginia in the summer, he was close to collapse. Barb picked him up at the airport.

At home, he tries to stick to a schedule. But any number of things during his hectic day can throw it out of whack. Work can last anywhere from 8 a.m. to 9:30 p.m., and forgetting to eat can make the pain set in quicker. Brokering deals for the governor with European drug suppliers means getting on the phone at 3:30 a.m. — it's 9:30 a.m. in Great Britain. Some nights he'll go straight from the train station to a four-hour Naperville Park District board meeting. Scott is a park board member. As one deliberation drones on past 10 p.m. he teases two reporters waiting outside chambers in the Municipal Center.

"You look like my kids, seeing who can stay up the longest," he says.

But there are nights when Scott has crashed and falls asleep well before his kids' bedtimes. The family keeps a bed in their living room to save Scott the climb upstairs.

"When I get home and fall asleep on the couch at 7 p.m. it's usually an indication I've had a pretty hard day," he says. "When my weight dropped to 185 it was every day. I'd kind of collapse. But I'm not at that point now, it's one or two nights a week."

"By the end of the day, he's got nothing left to give," Barb says. "Everybody else gets the best of him. We get the leftovers."

The leftovers
Zach, 11, chidingly refers to Scott's Blackberry wireless data device as "the raspberry." It drives him batty that his dad is seemingly glued to one cell phone or the other at any given moment, even on vacations. Ian, 10, says it's hardest for him to take when Scott's medication sours his mood and Scott feels like being alone. In those times, Ian says he feels angry and retreats to his room, or heads downstairs to play a video game with Zach to get some of his own anger out. "The medicine is really supposed to help him, but it really doesn't help him emotionally," Ian says. "It helps him dull the pain and stuff." If Ian had it his way, Scott "would stay home all the time, he would play Playstation games with us, go onto the computer with us a lot and do battlefield games and board games. If he was more athletic, football." Being realistic, Ian savors time fishing, or camping with the Cub Scouts, or browsing the army surplus store.

"I feel that I have to forgive him for all the stuff he's taking and all the places he's going and things he's doing for other people," Ian says.

Sometimes, though, Zach wishes Scott could take a break from "playing with the governor. If I didn't know so, I'd say they were best friends. We were kidding around, 'Oh dad, you should probably get a summer home up in Europe so as not to pay for the hotels.'"

Ashley, 12, feels that every trip happens at the wrong time. And she knows her father hides his pain well.

"I think it's just his personality," she says. "He is just very strong. If I was going through it, and if somebody asked me to do something I would be, 'God, just leave me alone. I have cancer.'"

But she's learned something from watching Scott get up and go to work even when it's clear it's a struggle. And now that she's older, she says it's a privilege when Scott engages her in one-on-one conversation. When Ashley's childhood baby sitter died in a car crash over the summer, Scott broke the news to her. She says he answered all her questions, calmly, without trembling or crying, like she was. His strength in that moment gave her balance, she says.

"When he's, like, talking and sharing his wisdom with me, he's definitely become more of a friend than more disciplinary," she says. "When you're younger, all you can remember is, dad yells. But he's different. Just whenever he's laughing and we're all laughing at the dinner table because of something Zach says. Those are good times."

"My dad always takes us to Chuck E. Cheese when we get our report cards," says Michaela, 8. "And he always hogs the Star Wars game. He doesn't let any little kids go on it. My mom always says that he's the biggest kid."

Zach and Ian get "guy time" — just them and their dad, three buddies lounging on his bed, watching the Discovery Channel or The History Channel, something with the military, or James Bond movies.

"When he's just laid back he'll talk to us about his theater days, he graduated (college) in theater and tells us all these plays he's been in, all these cool stories," Zach says. "My dad actually takes the time to actually care that we want to know about these things — if it will keep him off his Blackberry, sure."

Life as a legacy
Ram Kamath calls Scott "a guy you can trust your life with." The two work crazy hours together, whether in Europe, Springfield, Washington, D.C. or wherever Gov. Rod Blagojevich sends them, as the state's special advocates for prescription drugs.

"Scott has never let me down," Kamath says. "The job is quite taxing, quite demanding, but at the same time I think he enjoys this type of work. He's trying to change the way medicine is available to people and he's contributing to making them more affordable."

In early November Scott is worried about letting down others whose lives may be at stake, specifically those who may suffer from the flu this year and won't have a vaccine due to a nationwide shortage. In his third trip to Europe, Scott has utilized contacts he and Kamath made earlier in the year launching the governor's drug importation program to secure hundreds of thousands of vaccine doses. It's perfectly safe stuff, he says, in refrigerated storage, ready to ship. But the Federal Drug Administration and Illinois are playing a political game of who blinks first.

"I'm one frustrated mother," Scott admits as he pores over a Centers for Disease Control map tracking reported flu cases around the country. "I know too many high-risk people."

When Scott applied for the special advocate's job in April 2003, he was signing himself up for service he believed could go a long way toward fixing a health care system he sees as "woefully broken." The office he applied to work in was actually one he recommended the governor create. As a consultant, his firm did pro bono work on drug initiatives for Blagojevich's 2002 campaign.

Scott and Kamath have worked hard to make that vision a reality. Their work in Canada and Europe surveying drug distribution and installing a stringent system of safeguards breathed life into the governor's I-Save-Rx prescription importation service, of which Wisconsin, Missouri and Kansas are now partners. When patients sign up to receive their medication from Canada or Europe, the savings range from 25 percent to 50 percent or more, Scott says.

In a way, the pain he went through from cancer opened a door to help more people. He says he wouldn't trade it for anything. That's the sort of passion Kamath says keeps Scott going and Naperville City Councilwoman Darlene Senger says is an essential ingredient in public service.

"When it comes to serving there are two choices, you can feel sorry for yourself or get out there and do what you need to do," said Senger, who met the McKibbins through Park District karate. "Scott's the type who needs to do what he feels needs to be done. I give him a lot of credit for that."

Scott didn't run for elected office in 1999 to seek credit. He was driven to tip projects that he wondered about into completion, like Commissioners and Frontier parks. He sat on a joint committee with city, library and Park District officials to build Naperville's 95th Street Library in the right spot. He and park board Commissioner Ron Ory, Scott says, helped redirect golf profits back to the district's golf courses. When the district was mired in a police investigation and scandal earlier this year, he made sure he participated in the debate — even from Europe.

Barb says she begged Scott to stay home at times, mindful of how weak he felt. But there's a new sense of urgency to his participating now, he says.

"With this whole experience I've been forced to think about my legacy," Scott says. "I have four kids and whatever I've accomplished or whatever I do will live on, no matter how long I lived, in all of them. Whatever I've been able to share with them will come out and manifest itself in a way that I hope will be positive."

Sidelines are out of bounds
Next April marks the end of Scott's six-year park board term. There were points he wondered if he'd make it to the end. By the fall, he is contemplating another term, or maybe a role with Indian Prairie School District 204, or even the City Council.

"I can't stand on the sidelines," Scott says. "I can't afford to."

"Please stay on the sidelines," Barb purrs.

"There's no way," Scott demurs. "I have too much knowledge to stand on the sidelines."

But maybe more than he knows has been passed on already.

Ashley and Zach talk of building on their elementary class representatives careers and going into public service. Ashley has followed the flu vaccine debate and talks of "bringing humanity back into politics."

"You should just do the right thing because it's right," she says. "And if it makes you look bad, so what?"

Ian talks of strapping himself into a jet fighter, or hanging on the back of a fire truck. Michaela says flat out: "I wanna be a doctor so I find the cure to cancer." Zach sees himself as more of the debonair doc, jetting around in the commercial planes Scott once dreamed of flying.

A legacy can live on with one's peers, too. Dopkeen recalls taking Scott under his wing during Scott's first years in Chicago with the Hay Group. Later, clients would ask for Scott by name, he says. By the time Dopkeen flew with Scott to Europe this year, he stood back and watched his best friend and onetime protege manage a team of eight and sweet-talk foreign officials.

"At one point I turned to him," Dopkeen says, to let his friend know how he felt. "'This is gonna sound patronizing, but I have to tell you, I've known you for 10 years and I've got to say, I'm so proud of you.' I was choking up then. I'm choking up now."

Coming Sunday — Part four: Finding victory in faith

Contact staff writer Colt Foutz at cfoutz@scn1.com or (630) 416-5196.

12/24/04