Though Amy had lived most of her adult life with asthma, she had always felt healthy. That was until she moved to a new home and started a new job, and noticed her breathing was more labored and causing pain. She waved it off as symptoms caused by all the transitions she was making until, one day, she thought she was having a heart attack because of how sharp the pains had become. She decided to make an appointment with her doctor who, through various tests, determined her heart was fine but there was a spot on her lungs. Amy had no family history of lung cancer and had lived a healthy lifestyle, so she and her doctor weren’t very concerned. She decided to return to work and her busy life, giving little thought to the unassuming spot.
Two years later, however, Amy had an X-ray that revealed that the spot had grown. Amy’s daughter had begun working at a cancer center, so she set up an appointment to have Amy thoroughly assessed. A brain scan done during that assessment showed that 20 small tumors were growing in Amy’s brain, “and that changed the game,” Amy said. “It was such a shock, and it tore my daughter apart because all of a sudden I was stage IV, and because of her line of work she knew what that meant.”
Regardless of her diagnosis, Amy knew she could beat the odds. Her doctor determined that she had ALK positive non-small cell lung cancer and began treatment immediately. It started with 10 sessions of radiation, targeting the tumors in her brain. Then she began chemotherapy, which required her to take pills twice a day. She will probably be on this is the regiment for the rest of her life.
Because of the intensity of the treatment, Amy was forced to quit her job and focus on healing. One of the side-effects of the treatment was intense headaches, brain fog and the inability to decipher data after a short period of time, a problem for someone who had previously worked in data entry. So, she went on disability. “I'm very blessed because my husband makes enough to support us both and Social Security disability covers enough for the little things, like my medical bills,” Amy said. “Though I will probably have to take the chemo for the rest of my life, it has shrunk the tumors and done a good job of controlling the cancer.”
About every three months, Amy has routine bloodwork done to make sure that her medication is still working. Then, every six months, Amy visits her doctor for MRI and CT scans. “My doctor is wonderful and really encourages me. She jokes about not having to worry about me and calls me a superstar,” Amy says. “So, I just keep at it, and I am able to live a pretty good life.”
Getting Involved
Amy first discovered the American Lung Association through her daughter Sarah who decided she wanted to participate in the LUNG FORCE Walk. Sarah did a deep dive into the organization and learned all she could about lung cancer and joined online support groups. It was Sarah who first encouraged Amy to get more involved with the organization and other lung cancer survivors. Recently, Amy participated in LUNG FORCE Advocacy Day, where she spoke with several representatives in Washington D.C. about the need for more lung cancer research funding. “When I was on the American Lung Association trip, I met another woman who had genetically driven cancer. She has undergone different treatment and is on different medication than I am, but it is still genetically driven like mine. Before I was diagnosed, I had no idea that was a component to lung cancer, and now I see it’s not so uncommon. So, we need more research to find treatments for these types of cancer,” Amy explained.
Be Your Biggest Advocate
After receiving her shocking diagnosis, Amy is the first to tell anyone who has an abnormal scan to follow up on it, immediately. Though her family has adjusted to her diagnosis, that original conversation was very difficult, and she wishes she could have caught the problem sooner. “Early detection is so important and sometimes you need to advocate for yourself. I think because my doctor was unconcerned, I ignored little signs like a persistent cough, longer than I should have and let other distractions in life take priority,” she said.
Like many other mothers, Amy was caring for her children, her husband and her ailing mother and forgot to work herself into the mix, which is why she did not get diagnosed until she was stage IV. “My family was there for me 100%, they were a great support system, but it hasn’t been easy,” Amy said. “My advice, advocate for yourself and put yourself on the list with everyone else that you take care of. You need to care for your health otherwise you can’t care for them.”
Learn more about LUNG FORCE and how you can get involved with lung cancer advocacy.
Blog last updated: September 17, 2024
