Marathoner in a race for her life

Kathy Milczarski of Farmington Hills is a 51-year-old marathon runner who has completed 15 of the 26.2-mile competitions.

Now, she's in the race of her life.

If left untreated, doctors say a malignant tumor at the top of Milczarski's spinal cord could kill her. Called a chordoma, it is a rare cancer: Only about 300 people a year in the United States are diagnosed.

But the prescribed course of treatment involves highly specialized surgery performed by an expert spine surgeon in Switzerland. Her state health insurance plan -- Blue Cross Blue Shield of Michigan PPO -- does not cover planned surgeries out of the country.

The cost of the surgery -- $140,000, which includes a four-week recovery stay -- is way beyond any money Milczarski could ever hope to raise. She's single. She now lives with her parents, who are retired. And she lost her job last April when she exhausted her sick leave from her position as a nurse at Hawthorn Center, an inpatient psychiatric hospital for children in Northville.

As the days pass, Dr. Norbert J. Liebsch, a radiation oncologist at Boston's Massachusetts General Hospital who examined Milczarski and is recommending the surgery, says time is of the essence.

Without the surgery, Liebsch maintains: "The residual tumor is bound to progress in the not too distant future, causing major neurological deficits, including quadriplegia, and could ultimately prove fatal."

With the surgery (followed by proton radiation in Boston), Liebsch says: "Ms. Milczarski has a realistic chance of being cured of her (disease) with good quality of life."

Milczarski is in the process of appealing the insurance denial with the employee benefits division of the Civil Service Commission, where it is now under review.

Liebsch has written the state on her behalf, saying Dr. Dezsoe Jeszenszky, the spine surgeon in Zurich, is "uniquely qualified" to take on Milczarski's "particularly challenging oncologic problem."

What makes Milczarski's chordoma so risky, says Liebsch, is its size, configuration and proximity to the cervical spinal chord.

For Milczarski, having everything hanging in the balance fuels an anxiety that can't be underestimated. "You wouldn't know it just by looking at me," she says. "But my life literally depends on this surgery."

Equally stunning to her is how quickly life can veer off course. A year ago she was training with her three sisters for the Detroit marathon.

Today, her every waking moment is spent on the phone or the Internet doing research. She fires off e-mails with the subject line: "Please help! Any ideas? Thanks!" She keeps a daily log of her medical timeline: it is now 25 pages long.

So far, either she or a member of her family has sent pleas on her behalf to several politicians: Michigan Attorney General Mike Cox, U.S. Rep. Gary Peters, D-Bloomfield Township, Rep. Vicki Barnett, D-Farmington Hills, and Michigan Democratic Sens. Debbie Stabenow and Carl Levin.

"But so far, no one has stepped up," she says.

Like many cancer stories, Milczarski's journey began with a small symptom. For her, it was a stiff neck. From there, the road met lots of traffic, roadblocks, detours, even roundabouts, where she says ended up right where she started.

An MRI in January showed the large malignant non-metastatic bone tumor at the top of her spinal cord, In February, during a six-hour surgery at Beaumont Hospital, Royal Oak, doctors were able to remove about 70 percent of the tumor.

Following that, Milczarkski was originally scheduled for radiation therapy to remove the residual tumor, but it was later discovered that radiation would only delay the inevitable progression of chordoma for a few years.

"With radiation alone, I was given three to five years," Milczarksi says. "During which time it would paralyze me and leave me bedridden."

Milczarski stresses how fortunate she is to have the love and support of her family and friends, and she believes everything is in God's hands. Still, she admits she wakes up in the middle of the night in fear.

"I keep on thinking, how did I get here? I'm a marathon runner. Now, my life is on the line?

"At this point, I just keep fighting. I refuse to believe that I'm not going to have the surgery. It's just not an option."

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