For the time being

Preparing for the future a big part of family's life with cancer

"A farmer has some chickens that have been dying. He goes to the local vet and the doctor says, 'We'll try things.' He gives them some medicine and a bunch more chickens die. And he goes back to the doctor who gives him something else, and another bunch die. He goes back again, it goes on for awhile. Finally he runs into the doctor on the street: 'Well, how is it going?' 'Well, all the chickens are dead, I don't have any more chickens.' 'That's a shame,' the doctor says, 'there are so many more things I wanted to try.'"

-- Scott McKibbin, in July, on modern medicine.

Scott McKibbin pushes through the waiting room doors of Edward Hospital's medical center in Bolingbrook. He's come straight from work in Chicago, and is wearing a suit and a drawn, tired look. His lips twist into a wry smile as he hands a cylindrical container to a visitor.

"I have a present for you," he says.

For the past four hours he's taken regular swigs of bitter chemicals from the now empty flask, an iodine contrasting agent that will makes his insides glow when his body slips into the massive X-ray doughnut in the next room. Scott is a veteran of a dozen computerized tomography scans, but he never gets used to the galling chemicals, or the uncomfortable minutes his kidneys are photographed, or what those images might show.

The spring that ended just weeks ago Scott classified as the best he'd felt, physically, since being diagnosed with renal cancer in 2001 and undergoing two surgeries to remove kidney tumors. By early July, though, his body was again sounding the alarm.

"Either it's renal failure or the symptomatology is not real good at the moment," Scott says. "With my history I have to be careful about these things, investigate whether my kidney stopped working. The most obvious thing is my left kidney is failing or has failed. I can't go to the bathroom, for no apparent reason; I'm sore, fatigued and weak."

After days of denying it, Scott visits his doctor, who orders the scan for Monday, July 12. In two days, his family plans to drive to New Orleans, where Scott and his four children are set to compete in the USA National Karate Federation Championships. But Scott's mind reels with other potential battles — kidney removal, dialysis.

"Self-diagnosing is the worst thing in the world, probably." he says. "But something's gotta happen. I don't want to go down to New Orleans and have something really bad happen while we're 900 miles away from my specialists. The timing sucks. I'm doing my kata and I'm in a lot of pain. My wife knows, but the kids don't know. There's no point in riling them up until there's some definitive word on what's happening."

Cancer's schedule
Weeks before, following Scott's return to competitive karate after nearly three years on the sidelines, his voice danced through a tiny phone speaker, alive with possibilities.

In early May, Scott's cell phone was even more of a fixture at his ear than usual. His busy career as special advocate for prescription drugs for the state of Illinois and his life as an elected member of the Naperville Park District Board of Commissioners found him squeezing in conversations as he boarded planes, caught commuter trains or drove to another interminable meeting.

He spent a week in Europe inspecting drug distribution there, laying the groundwork for Gov. Rod Blagojevich's prescription importation partnership. The park board devoured his hours at night — even via phone from across the Atlantic — as the district groaned through the final procedural throes of dispatching an embattled employee. Despite the havoc the Europe trip plays on his sleep patterns and medication schedule, Scott's body bounces back.

"It's good being able to go to work and be fully functional at work, come home and interact with the kids and not fall asleep at 8 o'clock," he says. "That's good. To be able to go to karate and train, that was good. On the weekends to be able to have enough energy to do all the things around the house I need to do and not just want to sleep all weekend, that's good."

Barb and their kids are caught in a summer wave of pool parties and sleepovers and Cub Scout outings. Ashley marches through a Memorial Day parade downpour while the family huddles under an umbrella, watching. They picnic with cancer survivors in a park along Naperville's Riverwalk. When the governor or the park board pull Scott away, Barb pencils him into a free space on her calendar. She reschedules youngest daughter Michaela's 8th birthday; she slaps together a combined Parents' Day.

"I didn't get my Mother's Day," Barb says. "He was in Paris!"

New Orleans looms as a chance to keep the family in one place for a few days, to pick up the thread of hope in April with the family's feats at the state karate championships — Michaela, a gold medal in kumite; Ashley, first in kihon; Zachary and Ian, both medalists and bound for nationals.

Shortly after the state tournament, Scott speaks with a vigor that hints his fifth-place finish in kata is only the beginning. Yes, the nerve damage which requires daily doses of narcotics had him in more pain than his opponents, and restricted his movement. But at nationals, if he times the doses just right, he says, maybe. He'll be at the youngest end of his 40 to 45 age bracket, he says, so just maybe.

And since kids compete on different days, he'll be able to give his brood the full benefit of his coaching. He hatches a plan to up their training from about 70 katas per week to at least 150. And that goes for him, too.

"I absolutely wanted to win, and medal, and if I could have I would have," Scott says of the state tournament. "If I'm going to be serious about trying to compete at the national level it's going to mean a minimum 2,000 katas between now and then."

But whereas a kata consists of planned, precisely timed movements, life careens on like the world's most random roller coaster. And by early July, Scott's track is headed back downhill.

Family number 66
It all began with back pain, a blessing in Scott's eyes now. If he hadn't been lugging all that luggage around on planes in October 2001, if he hadn't gone to a neurologist, if they hadn't shot an X-ray — where would he be? Maybe dead. Each year, around 30,000 patients in the United States are diagnosed with kidney cancer. About 12,000 die from the disease. Scott suffers from chromophobe carcinoma, found in less than 5 percent of renal cancers. But doctors caught it early, in the first stage, before it spread to other areas of his body. The solution was surgery. Unlike some other cancers, radiation and chemotherapy isn't generally the best course of treatment for kidney cancer, according to Dr. Walter Stadler, Scott's oncologist and an associate professor at the University of Chicago. Because the kidneys filter toxins from the body, kidney tumors"sort of spit out all the toxins (like radiation and chemotherapy) you throw at them," Stadler says. So Scott went under the knife. Twice. The first time, in December 2001, to remove two tumors from his left kidney. The second, in August 2002, to remove a third and to repair a herniation of the kidney through his abdominal wall, a complication which resulted in nerve damage and chronic pain that persists to this day.

In between the surgeries, Scott learned his cancer stemmed from Birt-Hogg-Dube syndrome, a genetic disorder that affects only a few hundred patients in the United States. The syndrome manifests itself in several key ways: pale bumps on the face called fibrofolliculomas, actually tumors of the hair follicle; lung cysts and spontaneous lung collapse; and kidney cancer. Of those with BHD, as few as 15 percent develop kidney cancer. Scott, 38 when he was diagnosed, was only the third patient younger than 40.

Because the syndrome is genetic, surgeons can remove tumors, but there is a high risk of patients developing a third tumor, a fourth tumor and so on, Stadler says. Scott calls himself a "ticking time bomb." He may have 10 years; he may have 10 months.

"There's no five years and you're free kind of thing," Scott says. "They have found kidney cancer pops up 10 years later in a very odd place. It could be your shoulder, or in your bones, in your lungs. The textbook will tell you it will most likely go in your lungs and liver."

Because Scott's cancer is hereditary, each of his four children have a 50 percent chance of developing BHD. It's one of the reasons Scott has thrown himself into family studies conducted by the National Cancer Institute at the National Institutes of Health in Bethesda, Md. He's been examined there. His younger brother was examined there — he's clean. His mother was examined there — she's the family's carrier for BHD, but has no cancer.

Each new document in Scott's medical history gets sent to Dr. Berton Zbar and his team and filed under Family 66, the McKibbins' identification number. Zbar is working to develop a DNA blood test to screen for BHD, which could potentially affect 2 to 3 percent of the population, Scott says. They're mapping the genome — a set of chromosomes making up DNA — so they can develop a gene therapy, Scott says. When and if testing is a possibility, he'd sign his kids up in order to check for the defect before the onset of any trouble.

"The goal would be to correct the defect so that even if you were a BHD carrier they can do something so it isn't passed on," he says. "Maybe even in my lifetime. If not for me, then in the 20 years we have left before my daughter turns 30 (when BHD usually manifests itself.)"

New normal
The protocol for Scott is a CT scan every six months when things are otherwise normal to check for more spots on his kidneys. The nature of his cancer is bilateral, meaning tumors are expected to develop on both kidneys. So far, only his left has been affected, and the aim of treatment is to preserve as much functioning kidney mass as possible.

Each surgery is invasive. And every time they open him up, there's a chance for further complications, some life-threatening. Doctors clamp veins and arteries leading to the kidney and remove it from the body, placing it on ice and cutting out the tumors, Scott says. About 45 percent of his left kidney has been removed; parts were replaced with a foam gel.

"They say to you, 'Well, you know, we've already had the artery clamped off once,"' Scott says. "'We clamp it off a second time, it may be we unclamp it and it may leak, or we may destroy the artery. We may lose the kidney.' You're not gonna know until you wake up."

In all, Scott has five doctors: Stadler, the oncologist, every six months; his pain doctor, every month; an annual exam with a dermatologist to check his fibrofolliculomas for malignancy; and occasional exams with a urologist and gastroenterologist, who treat side effects from the narcotics.

Barb remembers Scott before the disease as a father who would romp with his kids in the basement, or get on the floor and wrestle their dog. When she'd had a long day watching the children, he'd take over while she'd head for the pool. And in their romantic life, she used to chide him about "chasing her around the bed."

"Is that all you think about?" Barb remembers saying. "I wish I'd never said those things. Those words haunt me."

Exhaustion from the pain and side effects of Scott's narcotics have robbed them of some of those lighthearted moments. He isn't able to do as much at home, or sometimes will start a project and not be able to finish. Barb has had to give up going out many nights; she does the bills now. They've had to find other ways to communicate and Scott has learned to be clearer about his needs.

"If your marriage wasn't strong before you face cancer, it's either gonna probably make it a lot stronger or be the thing that will bust it up," he says. "It's clear to me, I'd not be able to do any of the things I do today without my wife. She's stepped up. She's no longer Princess Mommy."

They've had to adjust their plans for a larger family, Scott says. He always dreamed of six kids. The hereditary nature of his illness makes that dream unfathomable now. Barb, who may have to watch her children go through what Scott's enduring, places her hopes in medical technology, and thanks God for time.

The psychological pressure of envisioning such an unbearable fate can build until you just want to shut it all off, Scott says. No more doctors, no more thinking about it. You want a break, which can be good, but dangerous.

"I'm more frustrated than anything else," he says of his body's warning signals. "I kind of sometimes feel like if it's not one thing, it's another. I don't like the new normal. I like the old normal. Give me the old normal."

Doing a latch
The diagnostic stage is always the worst, Scott says. Once you know what's wrong, you treat it. Until then, the mind leaps and spins, stumbles into tight corners with its own worst demons.

"It's that waiting period, somebody telling you, 'this is what you've got — sort of,'" Scott says. "Emotionally and physically, not knowing is probably worse than knowing for me. Then, 'this is what you've got, you've got a tumor, we've got to take it out' — BOOM."

The roller coaster picks up speed after the July 12 CT scan. It is the eve of the family's departure for nationals and Scott has not heard from any physician. He's pored over the film from the scan, looking for masses in his kidneys that don't seem to fit.

"Scott said the (CT scan) tech said to him, 'good luck' when he was leaving," Barb says. "You wonder, 'what did she mean by that?' It could have been innocent."

Scott has found no relief from his symptoms.

"It's not a good time," he says, packing the rooftop carrier on the family van. "I'll eventually up my dosages but I'm trying not to do it this week because I'm competing. On one level I want to know just to get it over with. But I'm not wanting to chase at it. If it's bad news it's going to find me soon enough."

Meanwhile, Barb is exhausted. She's concocted a treat of a vacation wrapped around a karate filling, a trip that will introduce her family to all manner of historical sites and new delights. They're stopping in Memphis, to see Graceland. In New Orleans they'll visit the D-Day Museum, try shrimp at Bubba Gump's, sample Cajun pastries, lounge by the pool.

She's trying to keep the moment pure for the kids, she says. They still haven't told the kids what Scott's going through — after all, they're not quite sure what it is yet. They're trying to protect them, Barb says.

But who's protecting the parents? As Barb plans where to stop on the drive, her mind turns to where they'll go if Scott has problems. The day before they leave her chest is tight; she gets weepy.

"I was in tears the other night, like 'I can't believe you're doing this,'" she says. "If he doesn't take care of himself he's not gonna be with us as long as we'd like."

Loading the rooftop carrier, Scott says he is determined he will compete in the tournament, along with his children. He doesn't want his cancer to impair his kids' performance. What would make him stay then? He heaves a big sigh.

"Theoretically, if someone said I have to stay because I'm about to... ." He stops short. "Hold on a sec, I've got to do a latch."

In the morning, the six of them are up before 5, and the van is rolling south to New Orleans.

Coming Friday — Part 3: Choosing pain, choosing life.

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

12/23/04