Woman resents stigma of lung cancer
Manalapan resident, nonsmoker, wants more research on disease
BY KATHY BARATTA Staff Writer

Amy Saul, pictured with her husband, David, and sons, Andrew, 13, and Ethan, 9, is waging a battle with lung cancer. She wants people to realize that not everyone who is diagnosed with the disease is a smoker.

MANALAPAN - Faced with the prospect of her own mortality, Amy Saul nonetheless remains optimistic, even feisty - determined that her life and legacy will be a source of hope and strength for others, especially her two sons.

Saul, 43, the married mother of two boys ages 13 and 9, was diagnosed just over a year ago with stage four, non-small cell cancer, or nonsmoker's lung cancer.

It is the same cancer that claimed the life of Dana Reeve, the widow of actor Christopher Reeve, at the age of 44 in 2006.

Saul said that for a while she felt the need to "justify" her diagnosis by assuring people she did not smoke, had never smoked and had never even been around smokers. She said that neither her parents nor siblings had ever smoked.

Now that attitude rankles her because, as she noted, "Getting a diagnosis of cancer is bad enough without having to feel like you have to justify to people how it isn't your fault."

Saul said that getting sick is no one's fault and that trying to get better should not be complicated by feelings of guilt.

Saul is the middle of three daughters, all of whom, she said, were diagnosed with having a breast cancer gene. She said her older sister survived breast cancer when she was in her 30s.

Saul said she "had always thought that (breast cancer) would do me in," but she came to learn that the nonsmoker's lung cancer with which she was diagnosed accounts for more deaths of younger women than breast cancer and ovarian cancer combined.

According to the Internet Web site of the Chicago-based Lungevity Foundation, lung cancer is the leading cause of cancer deaths in the United States, accounting for approximately 29 percent of all cancer deaths.

According to the information provided on the Web site, approximately 50 percent of people who are diagnosed with lung cancer have either never smoked or were former smokers.

The foundation states that lung cancer kills more Americans each year than breast, prostate, colorectal and pancreatic cancers combined, and strikes more than three times as many men each year than prostate cancer and more women each year than breast, ovarian, uterine and cervical cancers combined.

Yet, Saul said, lung cancer remains severely under-researched due, she believes, to the fact that no one pushes for lung cancer research because the perception of people who have the disease is that "they brought it on themselves" by being smokers. That brings her back to her belief that there is a stigma attached to a lung cancer diagnosis.

"It's unfortunate that stigma is attached" to the disease, she said.

Since being diagnosed with lung cancer Saul said she has learned what it means to take each day as it comes, but she does so now with a concentration on maintaining the best mental attitude she can. That is how she copes with the reality of her situation - by accepting it, but not surrendering to it.

Saul said her doctors were very honest with her from the beginning and she believes that helped her maintain the proper perspective. She also said the discovery and use of cutting-edge drugs seem to be working well for her and offer hope where none existed as recently as five years ago.

"I will never be cured, but I can manage the disease," she said.

In addition to receiving chemotherapy which targets the cancer, Saul also sees a mental health therapist. She continues to work part time as a travel agent.

Saul said she and her husband, David, do not dwell on the situation and he, too, takes one day at a time as do her two sons. She said her sons are aware of her disease and the prognosis.

"I'm going to die, whether it will be six months from now or a year from now, I don't know, no one knows," she said. "They know my treatment schedule and they deal with it, but we don't dwell on it. There's not a day that goes by that I don't think of it. It's like a cloud over my head, but I don't vocalize about it with them every day."

However, Saul said she tries to keep life as normal as possible for her boys, Andrew, 13, and Ethan, 9.

"That's key. To keep everything as normal as possible," she said.

The Manalapan resident said she hopes that by telling her story it will spur people to change their attitude and prejudice about people who have lung cancer, and lead to a better understanding and increased attention for research aimed at not only cures for lung cancer, but a study aimed at remediating or eliminating the environmental causes of the disease.

Saul said she decided to tell her story not only to enlighten people in general about the disease, but also in an effort to help spark research into the causes of the disease.

"It's a hard story (to tell), but I want my life's journey to count for something," she said.