Barbara Lawlor, Washington D.C.  Marilyn Pinaud says she is not battling her stage III lung cancer; she is trying to understand and deal with it. She is also trying to reach a population that is often diagnosed at a later stage of the disease, because there are so many misconceptions about lung cancer; the major fallacy being that mostly smokers are afflicted.

After being diagnosed with stage IV lung cancer in 2011, she has researched the disease and become active in the American Lung Association in Colorado and was asked to represent the Association’ s Lung Force initiative in Washington, D.C. and advocate for sustained funding increases for research about the number one cancer killer of women and men.

On Nov. 21, 2011, she was 64 years old, active and fit when an out of control skier collided with her. She says, “I was taken to the Boulder Community Hospital where my injuries were assessed and treated. I was hurting but it wasn’t any worse than some other sports injuries I have had. The real trauma arrived when the doctor told me they found something on my lung and it looked like cancer.”

She couldn’t believe it, she was strong and healthy, exercised, ate well and had never smoked. She was scared and panicked knowing that this horrible disease was growing in her body. Everything she had worked for was disappearing. Marilyn was an athlete and personal trainer who retired to Colorado so she and her husband could enjoy time in the Rocky Mountains together. They skied, cycled, biked and hiked.

The doctor told her that she was in stage 1 lobectomy and removed Marilyn’s lower right lobe. In doing so, the doctor discovered it was stage II because it was also found in her lymph nodes in the area. They were also in her neck which led to the stage III diagnosis.

“Each one of these restates was devastating; I felt like I was going in circles. I was lost.”

Her oncologist referred her to a lung specialist in Denver, who continued her treatment. They discovered she had a very rare mutation and there was no targeted medicine for it. Today they test for one in 200 of these genes and have approved drugs for the treatment.

They went after Marilyn’s cancer aggressively: surgery was followed by chemo and radiation simultaneously and then more chemo. During this time, she went to her computer for information even though reading had become a challenge.  Also at this time, her sister was dying of non-Hodgkins Lymphoma. When Marilyn’s daily radiation ended she went to be with her sister, who died two days later.

In June she completed her treatment and thought she was ready to get back to a normal life, but after being poisoned for six months, her body needed time to heal. She slowly gained strength and was able to go on day hikes. Short ones. Things were going well until a scan in January revealed there were spots on her spine. She needed a brain MRI immediately. She was back on chemo and was left exhausted and sick.

Metastasized lung cancer cannot be cured and the couple had to plan to maintain her life as long as possible. She began taking Avastin, a maintenance drug that kills the capillaries that feed the cancer; but also kills the capillaries that feed the rest of her body. It was becoming harder to do anything physical.

“For three years I was less physical and had more and more treatment. I have recently stopped treatment with my specialist’s support. I want to try to heal my body if I can before the cancer starts growing again and I have to try another treatment.”

Meanwhile, Marilyn goes from scan to scan, dealing with bouts of depression and frustration at being still alive with only half a body. Her prognosis had been she would live for one to two years. When she reached that point and was still here they upgraded the prognosis to one more year. Now it is five years later and she is dealing with survivor’s guilt. She has known three friends who have died of lung cancer in that time.

She reads, gobbles up any information on new treatments. She doesn’t gobble up food anymore because none of it tastes right and some that have spices, like pepper, burn her tongue. She has turned to less physical activities and has become an award-winning watercolor painter with many of her works displayed in local galleries or shows.

As she accumulated information about lung cancer she has also been working with other people suffering from the disease.

“Lung cancer is the number once cancer killer in the world and has been for a very long time. It carries the smoking stigma and is often discovered at stage IV, which is too advanced for life-saving treatment. A screening protocol needs to be developed for earlier detection. Most non-smoking people aren’t being screened but are discovered by accident. We need to find better ways to detect this very deadly disease.”

Marilyn was asked by a member of the lung association to tell her story to elected representatives in Washington D.C. She went to talk to Cory Gardner and Michael Bennett. When she was asked to go to D.C., she thought, “Really? Yes, it would be a great opportunity. They wanted me to go because they knew I could talk, speak my mind.”

She had decided to stop treatment then, to give her body a break. She was flown to Washington and put up at the Liaison Hotel. Her goal was to get the National Institute for Health to agree to funding. She says she has never asked anyone to give her $34.5 billion before. She went through training and met many people with lung cancer, which to her was very welcome, as she hasn’t met anyone in Nederland with lung cancer.

During her time there she was shocked and angry that more people weren’t talking about lung cancer, why research dollars were so scarce, and why more people weren’t angry about it. She cites the facts: Over 224,000 people are diagnosed every year in the US, 1.8 million in the world; it is the number one cancer killer in the world; It kills more than breast, colon and prostate cancers combined; the majority of patients are diagnosed at stage IV and die within the first year; a mere $2,300 per death is spent on lung cancer research, compared to $17,000 for breast cancer.

The NIH, which includes the National Cancer Institute, received $32.5 billion last year due to the efforts of people sharing their voice. This year, The American Lung association created the first LUNG FORCE Advocacy Day and invited a survivor or caregiver from every state to share stories with elected representatives. Marilyn represented Colorado. They rallied together and everyone wore the same color, to show unity. “It was a beautiful sea of turquoise on Capitol Hill. I was paired up with Alana Burns, the founder of LUNG FORCE. She was a wonderful guide and coordinator. I felt extremely honored to be a part of this movement.”

“I have become passionate about screening,” says Marilyn, “There were far too many young women there. It seems the screening method is only for those at-risk people, when many are fit and athletic and do not smoke.”

She says that when she was a child, both of her parents smoked and she was always exposed to second-hand smoke. She says that that could have been the beginning of the cancer. She had also had signs when she was 60 and did a 700 mile bike trip in Italy. When she realized that she was no stronger at the end than at the beginning, she felt it had been a red flag for her, but nothing showed until the ski accident when she was 64.

Life is different for Marilyn now, but she has made peace with how it is. Her second winter of cancer was the hardest, when she so wanted to go skiing with her husband. At that point, she turned to her painting.

“I don’t project what my life will be. I live day today. The Lung Cancer Association is making great strides and who knows what will come up. It is all a big unknown.”

Marilyn came home on March 24 and says she feels more empowered now. She has never liked being called a survivor and doesn’t want it ever said that she lost her battle with cancer.  Fighting is a negative connotation, she says. “I don’t feel like I am in a battle. I feel like I am just doing what I can. Cancer isn’t an enemy; you don’t battle it, you treat it.”

These days, Marilyn needs 12 hours of sleep a day and then she does whatever she has the energy or interest in doing. Right now, that is advocating for the Lung Cancer Association and getting the word out that people need to be aware of the disease and get screened at an earlier age.

She says progress is being made, but there is much ground to cover. “I have become very close with many survivors and my heart breaks each time one of them runs out of time.

“We fight as a family, we fight for ourselves, and we will continue to fight for those that no longer can.”