I would like to share my story of encouragement to celebrate this upcoming Mother’s Day to its fullest.
My name is Amanda Nerstad and I am a 39-year-old non-smoker mom with stage IV, non-small cell lung cancer (NSCLC).
I became inspired this Mother’s Day to share my story of living with cancer and the miracles that surround my family
Here is my story…..
My family and I recently moved back to my hometown of Knoxville, TN. We spent the previous 12 years living in and around the Greater Chicago area, but we felt a strong desire to raise our two girls, Isabella (7) and Greta (4) in East Tennessee. I love everything Knoxville has to offer and I loved growing up here (Knoxville Catholic High School alum). I wanted to give our kids the same opportunity to have the same wonderful memories of enjoying summer weekends on the beautiful lakes, hiking in The Great Smoky Mountains, and embedding ourselves in a community that embodies our family values. When my husband Gary had a job opportunity to move to Knoxville, we enthusiastically accepted. We moved to Knoxville in August of 2016, and after unpacking our last box, Gary and I celebrated with a high-five in our new home!
Shortly after our celebration our world changed forever as I was diagnosed with stage IV lung cancer. It was a complete shock! I went to my doctor thinking I might have walking pneumonia, because of some chest pain I had been feeling. After many tests, a misdiagnosis with ovarian cancer, and still more questions than answers, we were encouraged to go to University of Tennessee Medical Center for a second opinion. After a couple of surgeries, and a great oncologist at UT Cancer Center (Dr. Aljadir) who recommended genetic testing, we then found out I have a rare form of non-small cell ALK lung cancer. ALK is a genetic mutation that accounts for 3-7% of lung cancer patients and responds to targeted therapy.
I take a daily targeted pill (no traditional chemo or radiation) that helps keep everything stable. I will eventually gain resistance to the first generation pill and then move on to the next generation pill, which is why it is so important to continue funding for further generation therapies. We have realized that there is such a stigma that lung cancer is a smoking disease (even I thought it was, as it was such a shock that I could have this), but anyone with lungs can get lung cancer! We continue to see Dr. Aljadir and also see a specialist, Dr. Vincent Lam, every few months in Houston, at MD Anderson for continuous scans and tests. Both doctors communicate together to make sure I have the best care and most advanced treatments. They have become my great medical team!
My most important role, besides taking care of myself, is my family and being a mom to our girls. We are trying to be as normal as we can, enjoying our new community, making new friends and making those great Knoxville memories that I had when I was growing up here. My girls have loved taking hikes in the lovely hills, kayaking around the lake, enjoying being close to my supportive parents, Wayne and MaryAnne Walls, .
Recently my husband and I attended LUNGevity's HOPE Summit. The HOPE Summit Conference gave us an opportunity to meet and talk with some of the best doctors in the country, which also provided us with a wealth of knowledge and HOPE for those fighting with this disease. I loved it when Dr. Camidge told me, “The good thing is, you have lots of different options out there!". We left feeling inspired to share our story and start advocating on how important lung cancer research funding is. Mostly, we were glad that we were able to meet and connect with new friends that understand what we're going through.
I refuse to let cancer define me. Cancer is a side note, an asterisk in my life story, and while it brings huge financial, physical, and emotional challenges at times, it does not diminish the blessings that are all around us every day. This experience allows me to now see those winks from God-whether they are big “signs of wonder” kind of things, or the small things that we look past every day…be it a sunrise overlooking the lake on our way to school that we normally don’t stop and take note of for a second, or a funny thing your child does when you would otherwise be in a hurry, a really great tasting iced tea, or the way the sprinkler that your daughter is running through makes a rainbow,. We continue to be positive and thank God every day for our blessings. Being a mom is one of the most rewarding jobs, and I look forward to the future with hope.
I enjoy every “wink” more than I ever have and plan to CELEBRATE MOTHER’S DAY to its fullest!