When film icon Patrick Swayze first received the diagnosis of stage IV pancreatic cancer in 2008, he told his wife that he knew a rough road lied ahead.
“When the doctors had left the room, he turned to me and said, ‘I’m a dead man,’” Lisa Niemi, Swayze’s wife of 34 years, told FoxNews.com. “I didn’t know much about pancreatic cancer, but he did. He said anytime he heard someone had the condition, he thought, ‘He’s out of there.’”
The statistics surrounding pancreatic cancer further added to the couple’s unease. Currently, it is the fourth leading cause of cancer death in the U.S., and 74 percent of those with pancreatic cancer die within just the first few years of diagnosis.
Though he fought for over a year to keep his cancer at bay, Swayze passed away in September 2009 with his family and friends by his side. According to Niemi, Swayze was determined to stay positive and active up until the end.
Fueled by the amount of strength and courage Swayze had throughout his treatment, Niemi decided to make his mission her mission and has come forward as an advocate for the Pancreatic Cancer Action Network (PANCAN). As Tuesday marks Pancreatic Cancer Advocacy Day, Niemi and over 650 advocates for PANCAN are on Capitol Hill today – meeting with important members of Congress to ensure the government takes considerable action against the country’s fourth deadliest cancer.
From the very beginning, Niemi and Swayze had always been a team. The couple met in Houston, Texas when Swayze was 18 years old. He had been taking dance lessons from Lisa’s mother and became taken with his dance instructor’s daughter, who was just 15 years old at the time. The two developed a friendship and then became inseparable ever since.
And their bond became even stronger once Swayze became diagnosed as they worked together to fight his disease. After given just weeks to live, Swayze started chemotherapy and began an experimental drug called vatalanib – an inhibitor meant to cut off blood supply to the tumor in his pancreas. Niemi felt this was the best route for her husband after becoming discouraged with the other options that were available to him.
“Generally the things you use to treat pancreatic cancer,” Niemi said. “You’re typically using things that were developed for other cancers. They’re really not aggressive enough, or there are people who react differently. We wanted Patrick to have his best shot, but we had to think outside the box. So we started him on this experimental drug. We felt like that was his best shot.”
The novel therapy seemingly worked for a number of months, while Swayze continued to shoot his TV show The Beast, determined not to let cancer dictate his life. But after about a year, the treatment stopped having an effect – a development that Niemi described as “terrifying.”
“It means that you’re going on to the next treatment option – so it means your options are running out,” Niemi said. “And that’s kind of what happened over the course of the next year, and none worked quite as well. So we pretty much took him off.”
While Swayze’s story has a tragic end, Niemi is determined to turn his struggle into a positive and proactive force for change. During the course of his treatment, Niemi met numerous individuals suffering from the same debilitating cancer as her husband, many of whom were told by their doctors to simply to go home and get their affairs in order. Seeing these patients – and the little options they had available to them – ultimately inspired Niemi to take on the voice of her husband.
“This is going to change,” Niemi said. “We are doing our best to make it change this year. My husband died almost three years ago, and the statistics are staying the same. More people are being diagnosed and more are dying every year – and it needs to stop.”
Changing the odds
“[Lisa’s] an ambassador of hope,” Julie Fleshman, the president and chief executive officer of PANCAN, told FoxNews.com about working with Niemi. “She’s worked with us for almost two years now. Not only she has been wonderful in giving her time, but … she’s such a great person and really wants to carry on Patrick’s legacy so patients don’t have to deal with what her husband had to deal with.”
While pancreatic cancer may be the fourth leading cause of cancer death, it is currently the least funded of the major cancers – with only two percent of the National Cancer Institute’s budget devoted to pancreatic cancer research.
According to Fleshman, a major reason for this lack of dedication may be due to pancreatic cancer’s low survival rate.
“Breast cancer is a big example in that you have such notable survivors who are fighting for that cause,” Fleshman said. “With pancreatic cancer, we don’t have survivors. Family members have to pick up the fight, and that’s a very different fight. We were founded in 1999, and before that there was no movement for pancreatic cancer. Now we need people to raise their voices and put a spotlight on pancreatic cancer so we can change these very deadly facts.”
And that’s exactly what PANCAN is hoping to do – change the playing field. Niemie and the 650 advocates for the foundation are meeting today with congressmen and senators to discuss the Pancreatic Cancer Research and Education Act – a bill that would force the National Cancer Institute to create a strategic plan for pancreatic cancer.
Not only are advocates flooding Capitol Hill, but PANCAN has also encouraged people across the country to call in to their representatives and voice their support of the bill. With so much support for the cause, Niemi is inspired that change is on its way – something she is certain Swayze wanted as well.
“I know that without a doubt that if his illness had any part of helping another person, he would consider it his highest honor.”