Naperville mom gives a face to battle against lung cancer

Lisa Carlinsky knew something was wrong.

The 33-year-old Naperville woman was pregnant with her second child when she began experiencing migraine headaches and involuntary vomiting.

She sought medical help, but remedy after remedy brought no relief. She kept calling. Finally, after her third trip to the ER for dehydration, her medical team decided to perform a CT scan and brain MRI.

The results were shocking. The lifelong nonsmoker had Stage 4 lung cancer that had spread to her bones and created a crown of spots on her brain. She started 17 rounds of radiation the next day.

"They told me if I didn't start radiation on my brain immediately, which was the day after diagnosis, I had three to six weeks to live," she said.

The treatment meant the loss of the child she was carrying and, even if it were successful, Carlinsky was told she had only three to six months.

But Carlinsky had made a decision.

Lying in the hospital, she closed her eyes and tried to imagine what life would be like for her son, Matthew, then 2, if she wasn't there. She couldn't.

"From that point on, I just absolutely, positively, refused to die," she said.

The radiation was followed by aggressive chemotherapy.

She responded well to treatment, but has had three recurrences since. Cancer was found on her lung in September 2007, her spine in May 2008, and in 10 spots on various parts of her body, including her brain in August 2008.

Each recurrence has been followed by more treatments of radiation and chemotherapy at Edward Hospital in Naperville. The treatments have been done on an outpatient basis, but side effects have landed her in the hospital several times.

The face of cancer

Still undergoing chemotherapy for the most recent cancer recurrence, Carlinsky, now 36, is as determined as ever to fight her disease and make others aware of the facts about lung cancer.

Her resiliency has earned her a place among the 600 guests at LUNGevity Foundation's annual fall benefit, "Uniting for a Cure: Every Second Counts," at 7 p.m. Saturday, Nov. 15, in the Chicago Cultural Center.

November is Lung Cancer Awareness Month, said Beth Ida Stern, executive director of LUNGevity Foundation, an organization dedicated to funding lung cancer research and providing emotional support for lung cancer survivors and their families.

"The role of Lisa Carlinsky is to put a face on lung cancer. Lisa, unfortunately, fits a growing profile in the lung cancer community, " Stern said.

Carlinsky is among the roughly 50 percent of lung cancer patients who have never smoked or who have stopped smoking. A growing number of them are younger women.

Because no commonly accepted early detection tool for lung cancer exists, many patients like Carlinsky are diagnosed only after the cancer has spread to other parts of the body. Consequently, nearly 85 percent of newly diagnosed patients do not survive five years, making lung cancer the deadliest of all cancers.

In 2008, an estimated 161,840 Americans will die from lung cancer, more than from breast, prostrate, colorectal and pancreatic cancers combined.

So far, Carlinsky has beaten the odds. But she and her family know she is in for a lifelong fight.

"It's the nature of the disease that it's going to keep coming back," said Carlinsky's husband, Mark. "The word cured never comes into play."

So much to live for

Lisa said a strong spiritual faith; a supportive network of family, friends and neighbors; and a resiliency forged in an earlier difficult period in her life have kept her going.

In her late 20s and early 30s, she struggled with depression.

"When this came along, I said I'll be darned to have gone through all that to get back my will to live to get this and to die. No way," she said.

She has too much to live for to give up, Lisa said. She wants time with family and she wants to see her son grow up.

The Carlinskys recently explained to Matthew, now 4, that Lisa has cancer and that there are good bubbles (cells) and bad bubbles in her body. The medicine she takes is to fight off the bad bubbles.

"He's really sweet. He comes up and hugs me and tries to give me his good bubbles," she said. "He really is my biggest motivator."

Lisa said neighbors pitch in to give rides, carpool her son and bring meals.

The couple quickly learned they needed to accept help, Mark said.

"Not only is it a good thing for us, but it also makes others feel really good," he said.

The Carlinskys have found online support at www.care pages.com, a community of people who share the challenges and triumphs of facing a life-changing health event. The Web site has been a good way to share with an extensive network of friends the latest news without calling each one, Lisa said.

Mark said they also hear from people they didn't know through the Web site.

"People continue to say what an inspiration Lisa is to them," he said.

Both Lisa and Mark's immediate families live out of state, but get-togethers with family or friends provide reasons to keep looking forward, Lisa said. The couple has learned to savor the good moments.

"We try to spend as much time as we can as a family," Mark said.

He credits his employer, CNA Insurance, with providing a supportive work atmosphere. The company, where Lisa also was employed when she became ill, has sent care packages and flowers, allowed Mark to take time off as needed, and made donations to support lung cancer research.

But even with all the support, day-to-day living with Lisa's cancer is tremendously stressful, Mark said.

"I don't even say I remember what our lives were like before the diagnosis, but the last two-plus years have been quite a ride," he said.

The Carlinskys said they have learned to question and challenge doctors. Looking back, Lisa said she wishes she was even more insistent than she was initially in trying to find out what was wrong with her.

"Don't let a doctor tell you you are fine if you really believe you are not," she said.

Looking for a cure

But the Carlinskys also have found purposes beyond Lisa's own survival. Mark wears a purple bracelet that says "Cure Lung Cancer."

For that to happen, more research dollars have to be put into it, Stern said. She cites figures that, although lung cancer accounts for about 29 percent of all cancer deaths, the National Cancer Institute invested less than 5 percent of its budget to lung cancer research in 2007. Part of that may be because people believe lung cancer patients have earned their disease, Stern said.

"It's very deeply stigmatized. It's so bundled with smoking," she said.

The dismal survival rates of lung cancer patients also may make some in the medical community reluctant to devote their best efforts to it, she said.

"It's sort of a self-fulfilling prophecy," Stern said. "We don't have people to tell their stories."

But Stern said progress is being made. Research done in the past six or seven years has shown many cancers, including lung, have genetic components. Ferreting out genetic components could allow cancer to be treated in a more customized way, she said.

Lung cancer also may have hormonal factors, accounting for why it is on the rise among young women like Lisa Carlinsky, Stern said.

Lisa Carlinsky may never know why she got lung cancer, but she does know the fight against it must go on.

"It has knocked me down many, many times and I just keep coming back," she said.

• Do you know someone with an unusual or inspiring story? Let us know at sdibble@dailyherald.com, (630) 955-3532 or 4300 Commerce Court, Lisle, 60532.

<p class="factboxheadblack">If you go</p> <p class="News"><b>What:</b> "Uniting for a Cure: Every Second Counts," LUNGevity Foundation benefit for lung cancer research and support</p> <p class="News"><b>When:</b> 7 p.m. Saturday, Nov. 15</p> <p class="News"><b>Where:</b> Chicago Cultural Center, Sydney R. Yates Galley, 78 E. Washington St., Chicago</p> <p class="News"><b>Details:</b> (773) 771-3178 or <a href="mailto:ljones@lungevity.org">ljones@lungevity.org</a></p>