Amanda Nerstad: I Survived Cancer and Here Is How I Did It
An Interview With Savio P. Clemente
It’s okay to have a moment. My days are not always great. If I have a bad day or a rough moment, I give myself 24 hours to be sad, letting my mind “go there,” but the next day I make myself celebrate something. We’ve celebrated sister day and national dog day and all these little things. I always try to find something to celebrate.
Cancer is a horrible and terrifying disease. Yet millions of people have beaten the odds and beat cancer. Authority Magazine started a new series called “I Survived Cancer and Here Is How I Did It”. In this interview series, we are talking to cancer survivors to share their stories, in order to offer hope and provide strength to people who are being impacted by cancer today. As a part of this interview series, I had the pleasure of interviewing Amanda Nerstad.
Amanda Nerstad was 39 years old when she was diagnosed with stage 4 lung cancer and given between two weeks and nine months to live. A genomic test showed that she was ALK-positive, which enabled her oncologist to identify the most effective course of treatment for her. In September 2021, Amanda celebrated her 44th birthday five years after her diagnosis. She is the vice president of the patient-led advocacy organization ALK Positive Inc. and chair of the ALK Summit, which brings patients and caregivers across the globe together to learn more about ALK-positive cancer. Amanda lives in Knoxville, Tennessee with her husband and two daughters.
Thank you so much for joining us in this interview series! We really appreciate the courage it takes to publicly share your story. Before we start, our readers would love to “get to know you” a bit better. Can you tell us a bit about your background and your childhood backstory?
I grew up in Knoxville, TN. Later I moved to Chicago where I worked for 21 years as a flight attendant and also met my husband, Gary. We’ve been married for 16 years. After two decades in Chicago, we decided to move back to Knoxville both for my husband’s career and to raise our two girls, who were 4 and 7 at the time.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
Throughout my cancer journey, I’ve leaned heavily on my faith, especially in times of uncertainty. While it’s not really a quote, my husband and I often say that many of the blessings we received, whether it was support from loved ones or even finding out that my cancer was treatable, were little “winks from God” to let us know that he was with us.
Let’s now shift to the main part of our discussion about surviving cancer. Do you feel comfortable sharing with us the story surrounding how you found out that you had cancer?
In 2016, we moved back to Knoxville after my husband started a new job at a pharmaceutical company. About two weeks after the move, I was out for a jog and noticed I was completely out of breath. At first, I thought I might have walking pneumonia. The next day, I decided to go to a walk-in clinic with X-Ray capabilities since I had not yet established a primary care physician since moving to Knoxville.
The clinic referred me to the ER seeing what they believed to be a collapsed lung. After multiple tests, scans, and a surgery the doctor told me I had stage 4 lung cancer — a complete shock as I had never smoked or had any risk factors for lung cancer. Thankfully, my oncologist recommended comprehensive genomic testing. He informed me that genomic testing would help identify mutations in my cancer’s DNA that would help us understand the next appropriate treatment options, possibly including a targeted therapy, immunotherapy, or a clinical trial. I had a biopsy taken from my tumor and the sample was sent to Foundation Medicine, which revealed that I had ALK-positive lung cancer. I didn’t know what ALK-positive meant, but I soon learned it was a cancer caused by a mutation of the ALK gene with no known cause and no known cure. My oncologist said that having the test reveal I was ALK-positive was like winning the lottery because it meant I was eligible for a targeted therapy that might extend my life.
What was the scariest part of that event? What did you think was the worst thing that could happen to you?
The uncertainty was probably the worst part of the whole experience. The doctor was telling me I had two weeks to nine months to live. My daughters were 4 and 7 at the time, and I was very concerned with how much time I had left.
At the time we tried to keep everything as normal as possible for our girls. They were dealing with a new school in a new city, and I did not want to bring cancer into the mix.
One day my daughter Isabella came home from school crying. She told me one of her classmates had said, “Isabella’s mommy has cancer and is going to die.” That’s when we decided to be more open with our kids. They now understand things like, “Mommy has lung cancer and that’s why we travel every 90 days so the doctor can look inside her body,” or that “Mommy has pills that help her fight her cancer.”
How did you react in the short term?
I was really scared at the time. I had no risk factors, never smoked and was an active, healthy mom! I couldn’t stop thinking about my two little girls. I couldn’t believe I had stage 4 lung cancer. For whatever reason, all I could think about at the time was the little notes I leave in my girls’ lunchboxes every day for school. I kept thinking “Who’s going to put notes in their lunchboxes?”
When my doctor sent my biopsy sample to Foundation Medicine for my comprehensive genomic testing, that was the longest two weeks of my life. We prayed a lot at that time and tried to stay positive for our kids until we got the results back. We felt like we were in a waiting period until I had some sort of plan in place.
After the dust settled, what coping mechanisms did you use? What did you do to cope physically, mentally, emotionally, and spiritually?
We prayed and relied on our faith a lot.
Once I found out I was ALK-positive and learned I was eligible for a targeted therapy, I was able to relax a bit. We sought out a second opinion at MD Anderson with an ALK specialist and added him to my medical team.
At the same time, I wanted to seek out additional resources and learn as much as I could about ALK-positive lung cancer. Someone had told me to look on Facebook and I joined a closed group, “ALK+ Cancer Support Group,” where I got a lot of information about side effects and generally just what to expect and how to cope both mentally and physically.
Is there a particular person you are grateful towards who helped you learn to cope and heal? Can you share a story about that?
Gary has been there with me every step of the way. We support one another throughout the entire journey. I couldn’t be more grateful.
At the same time, it really does take a village. I have the help of doctors and researchers and the support of friends and family, all with the same goal of beating this disease and finding a cure.
In my own cancer struggle, I sometimes used the idea of embodiment to help me cope. Let’s take a minute to look at cancer from an embodiment perspective. If your cancer had a message for you, what do you think it would want or say?
Live in the moment. We’ve learned to live life 90 days at a time between my scans. I know that I’ll eventually gain resistance to the treatment I’m on, but for now I am WINNING! I think we’ve all realized that life is too short and sweet to focus on the negatives.
We don’t really have five or 10-year goals anymore. Of course, we talk long-term a little bit and we’re hopeful for the future, but even planning next summer’s vacation is a big step for us. So, I think throughout this crazy journey, it is important for us to stay positive, live each day with purpose and intent, continue to make great family memories, and try not to sweat the small stuff.
What did you learn about yourself from this very difficult experience? How has cancer shaped your worldview? What has it taught you that you might never have considered before? Can you please explain with a story or example?
This journey has taught me to notice those “winks from God” a lot more. When I was diagnosed and we were waiting on the genomic testing results, I was praying that God would give me some kind of sign. I was mad, I was sad, I was everything. We had just moved back to my hometown and I’m wondering to myself — why is this happening now?
At the same time our mailman was coming around making deliveries, and he stopped at our driveway with this big box. I’m sitting at my dining room table, looking out the window, wiping my eyes and wondering what this could be.
When I opened the box, it was full of cards and letters from our home church back in Chicago. The first card I saw had Joshua 1:9, “Do not be afraid or discouraged for the Lord your God is with you wherever you go.” That was just the sign I needed. I felt this peace just wash over me. Later, I was talking to Gary and he said we need to notice those “winks from God.” It’s been an amazing source of comfort and support.
How have you used your experience to bring goodness to the world?
The ALK-positive Facebook Group I mentioned turned out to be so much more than an educational resource for me. Through those connections, I learned about a conference hosted by LUNGevity, a lung cancer nonprofit research organization. In April 2017, my husband and I traveled to Washington, DC and spoke to a lot of other survivors and caregivers in their 30s and 40s dealing with the disease just like me.
We also spoke to some of the best doctors and researchers in the world and learned a lot about lung cancer, including the fact that it’s the number one cancer killer in the U.S., but also one of the least-funded because of the negative stigma it carries as a smoking disease.
Following the conference, back in our ALK-positive support group, we were discussing these statistics and how unacceptable they are, so we asked ourselves what we could do as a group to help drive research efforts.
That’s when we created a board of our own and partnered with LUNGevity, which gave us access to their advisory boards and research connections and 501(c)(3) status for fundraising. With those connections, we all set out to raise money however we could in our own communities.
At that same time, our family was working on a summer bucket list which had activities like going to the beach and hiking, but my daughter Isabella, who was 8 at the time, came to me and said she wanted to do a lemonade stand to raise money for a cause. I was thinking she would suggest something like saving the puppies at the animal shelter, but to my surprise, she said she wanted to do it for lung cancer. I was a proud mom. We invited friends and family to our lemonade dance party (my daughter was adamant it had to be a dance party, DJ and all) with a goal of raising $100.
That day we made over $5,000 for ALK-positive lung cancer research. Between our lemonade dance party and the other members’ fundraising efforts, we raised $600,000 in 2017 for three research grants designated for ALK-positive research. Since then, our ALK-positive group has obtained our own 501(c) (3) and has raised over $3 million — all for research grants specific to ALK-positive research.
What are a few of the biggest misconceptions and myths out there about fighting cancer that you would like to dispel?
Anyone with lungs can get lung cancer. Everyone always asks me if I smoke or did smoke or if it was radon, and the answers are no, no, no. There is a misconception that lung cancer is a smoking disease, which is one of the reasons it is so underfunded. I want to change that misconception.
Outside of lung cancer, let me first say that I was overwhelmingly grateful for the outpouring of support I received from friends and family, including all sorts of care packages. That being said, I probably got about 30 pairs of pajamas. Don’t get me wrong, everyone loves a good pair of PJs, but just because someone is diagnosed with cancer doesn’t mean they’ll be lying in bed all day! I was still taking my kids to school, walking the dog and trying to exercise. So, while I appreciate all the PJs, know that everyone’s treatment is different.
Fantastic. Here is the main question of our interview. Based on your experiences and knowledge, what advice would you give to others who have recently been diagnosed with cancer? What are your “5 Things You Need to Beat Cancer? Please share a story or example for each.
1. Don’t give up. You don’t realize how much strength you have until something like this happens
2. Lean on your family and support team. There were times I thought I could do it all, especially with my kids, so I was very grateful to have friends and family lending a hand.
3. It’s okay to have a moment. My days are not always great. If I have a bad day or a rough moment, I give myself 24 hours to be sad, letting my mind “go there,” but the next day I make myself celebrate something. We’ve celebrated sister day and national dog day and all these little things. I always try to find something to celebrate.
4. Try to do your own research. Be your own advocate. Find the best doctors for your specific cancer, seek out a second opinion. My doctor is a great oncologist but is not experienced in ALK+ so he was willing to work with a specialist that is. It could make a huge difference in your treatment plan.
5. Find a support group online for your type of cancer. Facebook groups allowed me to relate to other moms with young kids with the same experience. You need just as much mental support as medicine!
You are a person of great influence. If you could inspire a movement that would bring the most amount of good to the greatest amount of people, what would that be?
For me it’s about helping people. The more knowledge people have with a cancer diagnosis, the more in control they feel. If we can help everyone understand their own specific cancer, they can be more empowered. I’ve tried to embody this through my work with ALK-positive.
To build on that, I would like to see researchers and doctors working together. This is a team effort and if we get enough of these smart doctors and researchers together working towards the same goal, I know we can find a cure.
We are very blessed that some very prominent names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch, and why? He or she might just see this if we tag them. 😊
Oprah. She’s interviewed some of the most interesting people around the world. I’d love to have a French 75 with her and pick her brain!
How can our readers further follow your work online?
Through my Facebook page and our ALK Positive Incorporated Facebook page or our website, alkpositive.org.