Always seek a second opinion. The first opinion I received made me believe that my cancer was a death sentence and there were no options out there for me. Once I received a second opinion, my entire perception of my cancer and my future changed. I was given hope and options to turn my once terminal cancer into a long-term, manageable condition.
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 Heidi Nafman-Onda.
Heidi Nafman-Onda is 58 years old and has been married to her high school sweetheart, Pierre, for 35 years. They live in Greenwood Village, Colorado, a suburb about 20 minutes southeast of Denver, and have 3 adult children ages 32, 28, and 25 who live across the country. She was diagnosed with stage 3A lung cancer in 2018.
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 Los Angeles, California. I was a very shy, only child. My parents were older and struggled to make ends meet. As they worked multiple jobs to give me the best life possible, I was alone most of my days when I got home from school. Pursuing a higher education was very important to me, so I studied hard and did not socialize very much. My life changed forever in 1979 at the end of my junior year of high school when a friend convinced me to go with her to the last dance, “Disco Night”, of the school year. Pierre, a popular boy in his senior year, about to graduate, asked me to dance. We have been together ever since. Although he went far away to college, we managed to stay connected by snail mail letters (which I still have), long distance phone calls, and visits about every two months. He was always there for me, no matter how many miles away, no matter the ups and downs of life. He is still by my side through this unforeseen path that we never could have predicted.
Although there was longevity on my father’s side of the family, my mother’s side of the family suffered from type 2 diabetes and heart disease. I knew to keep physically active and developed good nutritional habits in early adulthood to try and prevent what seemed like a certain fate of heart disease and diabetes. My father died of a rare blood cancer at the age of 63 and my mother lost her life to heart disease and diabetes at the age of 68. Determined to do better in my quest for longevity, I increased my exercise regime and cleaned up my diet even more. Never in my wildest imagination did I even consider being at risk for lung cancer. Heart disease was the disease I thought was likely to take me down, but it is lung cancer that I am living with.
I’ve built a life for myself in Greenwood Village, Colorado, where I live with Pierre, who is a primary care physician. For my entire life, I’ve been a health enthusiast which led to getting a master’s degree in Health Education, and launched my career as a fitness instructor since 2003. My passion really is to help others live healthy lives.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
Be all in and maximize each day. Just keep going!
Whether you have cancer or not, it’s important to maximize the time you have each day. No one knows what’s next or what’s ahead, so we need to take advantage of all opportunities to be happy. When we get knocked down, we have to get back up and keep moving forward.
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?
A few weeks prior to my diagnosis, I was experiencing a dull ache in my lower left side. I assumed it was an ovarian cyst, as I have a history of these, and I went to have it checked out. I had never smoked a day in my life, nor did I have a cough or any other symptoms that are usually associated with lung cancer. You can imagine my shock when one day, in the middle of my daily work out, a pulmonologist called to tell me I had Stage 3A non-small cell lung cancer. At first, I didn’t believe what I was hearing. But there it was — a mass in the upper lobe of my left lung that lit up following a PET Scan. Shortly after, a biopsy revealed inoperable lymph nodes. I was given a poor prognosis and was told it would be a good ideas to get my affairs in order.
What was the scariest part of that event? What did you think was the worst thing that could happen to you?
The first opinion from the pulmonologist was that my diagnosis was essentially a death sentence. In that moment, I felt like there were no other choices — this was my fate and I had to accept it. It was only when I met the oncologist and got a second opinion that I learned that might not be true for me. The oncologists confidently explained to me that in some cases, perhaps like mine, cancer is becoming a manageable long-term condition. There was also a new immunotherapy that I might qualify for that had curative intent.
How did you react in the short term?
I felt tremendous fear at the beginning right after my diagnosis, and a lot of anger. I was so puzzled that I could get the number one cancer killer that I’ve been taught my whole life was only caused by smoking, and I never smoked. I resented that I would have to explain to people that I did not have a history of smoking and they would then want me to explain how “I got” lung cancer. I said to myself, “why couldn’t I get the good cancer”, you know, the cancer that everyone has empathy for. Are people with other cancers asked how they “got” their cancers? Why is lung cancer treated differently? Even if someone has a tobacco addiction, no one deserves lung cancer. That was extremely difficult for me.
Founding The White Ribbon Project with my husband has helped ease that anger. The White Ribbon Project is an organization that aims to dismantle the negative perceptions associated with lung cancer. Today, I feel empowered to use my voice to re-educate people about lung cancer and change public opinions and misinformation. I hate having cancer — don’t get me wrong — but I feel confident that the voices of the lung cancer community could really make an impact and change the negative narrative surrounding a lung cancer diagnosis. The public needs to know the facts: anyone with lungs can get lung cancer.
After the dust settled, what coping mechanisms did you use? What did you do to cope physically, mentally, emotionally, and spiritually?
The first coping mechanism that I still employ each day is to do everything I can to take care of myself and my health. Practicing healthy habits helps me gain a sense of control and peace with my diagnosis, whether it be through eating healthy meals, drinking lots of water, or staying active. Being able to take my walks, to exercise, to travel — those things were all confirmation for me that I am strong and I can get through this.
Connecting with fellow cancer patients, whether it be through advocacy initiatives or joining support groups and programs, really helped me cope emotionally. One night while scrolling through Facebook, a notification popped up that I had received a Facebook friend request from someone named Ron. I took a quick look at his profile and immediately noticed that he was also a Stage 3 survivor. Up until that point, everyone I had met in the lung cancer community was Stage 4. So, I messaged him and asked if he would be willing to connect via phone. When we first spoke, Ron had just finished his immunotherapy infusions. I was so excited to talk to someone who had completed all of the infusions and was doing well. Ron’s journey gave me so much hope, giving me the confidence I needed to know that going through treatment was all worth it. Since then, Ron and I have maintained a strong friendship. Only another cancer patient can understand what you’re going through. Ron has also introduced me to invaluable resources, like Notes of Encouragement — a program which shares words of wisdom and encouragement to people going through treatment from real patients. He also encouraged me to become a Phone Buddy with the GO2 Foundation so I could help others. The GO2 Foundation, LUNGevity, and several other advocacy organizations became great sources for education and support while I was in treatment.
Is there a particular person you are grateful towards who helped you learn to cope and heal? Can you share a story about that?
For me, having a medical team that I felt really cared about me was extremely important. The first opinion I received upon diagnosis made me believe that my cancer was a death sentence. I figured I’d get a second opinion because I had nothing else to lose — no information could be worse than the first opinion I received. The demeanor of my oncologist really motivated me. He presented my cancer in a hopeful way. He spoke with me about immunotherapy, presenting it as quite the game changer. At that point, I told myself I was going to do everything I could possibly do on my end to have an optimal experience with my treatments and outcome. Whatever was recommended to me, I would do it. When hope was given to me, I was all in. I was going to maximize each day I could get. I would just keep going!
Beyond my medical team, my husband, Pierre, is an incredible support system for me. He’s been loving and loyal through it all. He always ensures that I’m prepared for anything. I was told my combination of radiation and chemotherapy could cause me to have esophagitis — as the treated lymph nodes were near my esophagus. My husband meal prepped delicious pureed foods — things that I would be able to tolerate and also enjoy. This is just one example of the ways he takes care of me, thinking about the things that I don’t have the energy to, making each pain point a bit easier. He did not miss a single chemo appointment and immunotherapy infusion. And above all else, rather than feeling pitiful, he looks at my cancer as a battle that we’re in together. He encourages us to do the things that we’ve always wanted; together we created a bucket list and have done nearly everything on it. Pierre helps me find reasons to celebrate life. Our adult children have also been very supportive to me and to Pierre. They are my caregivers, too, and I believe they give comfort to one another as well as to their father.
Lastly, my friend Ron. I really wish I would have found him from the beginning. As much as loved ones were there for me, there are certain things in a cancer journey that only other cancer patients can truly understand.
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?
I am fortunate that I found my cancer as early as I did by listening to my body. I knew from my personal medical history that ovarian cysts required follow-up. If not for that, who knows how long it would’ve taken for me to seek proper medical attention. The cancer was sneaky and silent, and I had a difficult time believing that I was so “sick” because I felt healthy and strong. When looking at the images from the PET and CT scans there was no doubt the cancer was there and I had to accept that. Initially, I felt betrayed by my body. How could I do all the “right things” my whole life and still get lung cancer? How could my body not let me know the cancer was brewing?
Given I still felt strong and healthy and could exercise without new limitations, I continued to plow through with my daily routines of cardiovascular and weight training as well as hiking on the weekends, all with the approval of my doctors. In the moments that I felt a complete loss of control, being able to function physically as I always had helped me gain some of that control back. The cancer was there, I was fighting it with all the tools that my care team could give me, in the form of chemoradiation and subsequent immunotherapy. I was committed to doing my part by complying with all recommendations and keeping my body fit.
Thinking about the message my cancer is giving me, I feel that it is letting me know that there will always be challenges in life. Life isn’t easy, but there are things I can do to help me strategize and face the hurdles. Today I feel much stronger than I ever thought I could be.
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?
I learned that I am much stronger emotionally and physically than I thought I was. My strength is rooted in my body, my mind and my voice. People often say to me, “how are you getting through this? I don’t know how you do it”. My response is that I am finding there is no choice but to keep lifting myself up, even during difficult days because I do not see any alternative. Do I give up or do I deal with whatever comes my way? Somehow, I find that I just keep going, no matter what.
My worldview has certainly changed. I no longer sweat the small stuff and I do a better job of putting things into perspective. I try not to waste time worrying about the “what ifs”. I have learned that even if the “what ifs” happen, there is usually a plan to move forward, so no sense in wasting time perseverating on things that have not happened. I will never get that time back and I would rather live the best I can each day. Although we all live with uncertainty, I did not have a real grasp on what uncertainty really meant until it was standing right in front of me in the form of a lung cancer diagnosis. Adding the pandemic into the mix only heightens the uncertainty. I am appreciative of every day that I am given.
Taking control back into my life has been empowering and productive. My frustration with the lack of lung cancer awareness efforts across the country and around the world has helped me find my voice in the form of a 2’x1’ wooden white ribbon that Pierre made for me with love and care. I could put it on our front door and scream to the world that I have lung cancer and I am not ashamed of it. I could literally use my voice publicly to increase awareness and also help people stand and find their community. Being an innately shy and private person no longer serves me well. I am fighting for my life every day, as are the approximately 230,000 people who are newly diagnosed with lung cancer in the U.S. each year. It is worth it to be vocal and visible. People are beginning to see our staggering numbers and learn the #1 cancer killer can afflict anyone with lungs.
How have you used your experience to bring goodness to the world?
Connecting with Ron introduced me to resources and also taught me the value of peer support for cancer patients. Being able to connect with others facing the same challenges is a key to battling lung cancer. It was Ron who introduced me to Notes of EnCOURAGEment. I ended up becoming a spokesperson for this campaign, as well as a Phone Buddy for the GO2 Foundation because of my passion for helping others. Through others that I met, I also found LUNGevity and their virtual support groups. The big question is, why did it take nearly a year to find other survivors and a support network that is very valuable to me? For Pierre, my loving caregiver there were no resources until recently. No one should ever feel alone in this diagnosis, especially since the prevalence and mortality rates are so high. This would never be acceptable for any other cancer.
As the White Ribbon Project has grown across the country and abroad, it’s helped people touched by lung cancer connect with one another quickly. I could increase awareness by giving people accurate information about lung cancer with my skills as a health educator, and Pierre could help with the voice of a primary care physician to teach other doctors and members of the medical community to put lung cancer on their differential diagnosis list even when there is no history of smoking.
On July 2, 2021, Pierre and I embarked on a 7,000 miles cross country road trip stopping at cancer centers and communities to galvanize the lung cancer community by building white ribbons together and giving them to people touched by lung cancer. We reached 17 states and 22 cities in 6 weeks. From the ribbon building events, 1,175 ribbons were created and are now being distributed by survivors and caregivers to other survivors and caregivers. People are telling their stories and humanizing the disease. Together, as a unified team of survivors, caregivers, and the medical community, we have the power to change the public perception of the disease and increase research funding for the cancer that kills more people than breast, colon and prostate cancers combined, and has been the #1 cancer killer of women since 1987. We have to keep going!
What are a few of the biggest misconceptions and myths out there about fighting cancer that you would like to dispel?
Myth: Having a history of smoking is the only risk factor for lung cancer. The fact is anyone with lungs can get lung cancer, and no one deserves it. Radon exposure is the 2nd leading cause of lung cancer. Environmental toxins and genetics are also risk factors. Where is the public health campaign that highlights these risk factors?
Myth: Only old people get lung cancer. The rates of lung cancer in young people, age 40 and lower, without smoking histories are growing. More research is needed to learn why this is happening.
Myth: There is no screening for lung cancer. A low dose CT scan (LDCT) can detect lung cancer in early stages when it is most curable. This scan is available to people aged 50–80 years with a 20-pack year smoking history, and currently smoke or have quit within the last 15 years. If you do not have a history of smoking, you are not eligible for this screening, even if you have other risk factors.
Cancer treatments have come a long way and chemotherapies are becoming quite tolerable with great anti-nausea medicines to mitigate the side effects. I never experienced nausea or vomiting. I never lost my hair, as that doesn’t usually happen with the type of chemotherapy I had.
Please remember there is hope! New discoveries and treatments are coming down the pipeline every day. High quality of life is possible even with a late-stage diagnosis. I, and a growing number of my friends with late-stage lung cancer are living proof!
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.
- Always seek a second opinion. The first opinion I received made me believe that my cancer was a death sentence and there were no options out there for me. Once I received a second opinion, my entire perception of my cancer and my future changed. I was given hope and options to turn my once terminal cancer into a long-term, manageable condition.
- Connect with other cancer patients. No one should ever feel alone. No one understands quite what you’re going through like another cancer patient does. Lung cancer is tough, but it can be less tough with support as you face the adversity of your diagnosis. For me, connecting with my friend Ron, a fellow Stage 3 lung cancer patient, was a game changer. He really understood how I was feeling, and he pointed me to resources that I never knew existed. The GO2 Foundation, LUNGevity, Notes of Encouragement, The White Ribbon Project and other lung cancer advocacy groups can help you get connected to other survivors and caregivers.
- Make a list of things you want to do, and actually do them. I don’t like to call this a “bucket list” because that makes things sound terminal, but it’s important to make the most of each day. Don’t wait around for things to happen — do the things you want to do when you can. For me, I’ve always wanted to be a world traveler. If it weren’t for my diagnosis, I would have never seen half the places that I have now visited.
- Practice gratitude and find reasons to celebrate. While in treatment, I focused on taking things ‘one infusion at a time’. I would focus on celebrating the milestones, no matter how big or small. When I started on immunotherapy, I was told I would need 26 infusions. I told myself that after the 13th infusion I would go on a trip to celebrate the half-way mark. And I did! You can’t wait until treatment is over to start living your life.
– Start keeping a gratitude journal, and encourage your loved one to do the same. My husband and I would sit down each night and reflect on moments in our day that we were grateful for, sharing them with one another. This really helped to keep us connected, giving us insight into what one another were feeling and going through. It also helped us appreciate all moments in life, no matter how big or small.
- Make sure you have a solid support system. A cancer diagnosis can be very isolating. As cancer patients, we often feel like no one can really understand what you’re going through on the day-to-day. It’s important to find a support system that will be present and make you feel comfortable to communicate your needs. Don’t be afraid to ask for what you need, whether it’s rides to treatment, meals prepared for when you get home, or even just a good a hug.
-Pierre participated in all aspects of my treatment, including the emotional pieces. He came to every single appointment I had. One time, there was a power outage at his work and he was unable to make it to one of my appointments. Before I knew it, he called my best friend and she was at the appointment waiting for me to arrive. He didn’t miss anything and I couldn’t have done it without him.
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?
I want to use my voice to change the harmful narrative and public perceptions surrounding a lung cancer diagnosis. My wish is that when people hear of someone having a lung cancer diagnosis they realize, wow, this could happen to anybody.
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. 🙂
Melinda Gates, Dr. Francis Collins (Director of the NIH) or Oprah Winfrey, or anyone you think is more realistic to see this and take interest.
Both Melinda Gates and Oprah Winfrey are very philanthropic and want to make the world a better place. They may not be aware that lung cancer is the number one cancer killer of both men and women, and it has killed more women than breast cancer since 1987.
Dr. Francis Collins can determine funding allocations from the NIH. Although data of prevalence and mortality rates of lung cancer clearly exceeds any other cancer, I would like to discuss why there is so little funding toward this cancer.
How can our readers further follow your work online?
Receive words of wisdom from me as you or a loved one goes through treatment by signing up for Notes of EnCOURAGEment at www.notesofencouragement.com
You can also keep up with my journey and advocacy efforts by following me, @heidi_onda on Twitter and The White Ribbon Project on the website and on social media.
Facebook Page: @TheWhiteRibbonProject
Thank you so much for sharing these important insights. We wish you continued success and good health!