Introduction

Hi, my name is Donnita.

My doctor diagnosed me with stage 1A non-small cell lung cancer at the age of 68.

I realized that I couldn’t go on like this any longer. I moved to a hospital practice and went in with my list of requests. Right at the top of the list was a low-dose lung cancer CT screening. I got it easily; they didn’t give me a hard time at all. The day that I got it, alarms went off.

I had my screening that morning. They called me that afternoon and said, “You need to get to a pulmonologist immediately.” From that point, things happened so quickly. Six weeks passed from the time I had my screening until the time I was on the table for surgery.

My Diagnosis

The pulmonologist I consulted told me that they found a suspicious nodule. Right away, I thought it was lung cancer. I’ll never forget how calm I was, though, when I went to the pulmonologist. He must have thought, “Who is this woman sitting here?”

I was even somewhat fatalistic. I looked at him and said, “I’m done, right?” But he said, “No, we’re getting you in for a PET scan. I don’t even want to do a biopsy because there’s too big of a chance that it would come back with nothing found. Let’s see what the PET scan finds.”

After My Surgery

My surgery had such an impact on me. It was a good thing that I was in therapy at the time. The therapist I was seeing didn’t specialize in treating cancer patients, but she was very good. She had already been working with me on breathing and meditation. Although I’ve been resistant to meditation, I’ve been receptive to breathing.

I kept saying that hiking was my meditation. She didn’t agree with me, but we accepted that was how things were for me. But at that point, I started to realize how fortunate I was.

Then the survivor’s guilt started to come in. I realized I needed to connect with other patients because I couldn’t burden my children with my mental health issues post-treatment. Their mother having lung cancer was already devastating to them. When we think of “lung cancer,” we automatically think it’s fatal. I knew I needed to connect with others like me, so I started my search for support communities.

How I Handled Survivor’s Guilt

I started to feel survivor’s guilt because I didn’t realize that there were so many people who didn’t have a smoking history who were in their 20s, 30s, and 40s, and who were being diagnosed with lung cancer at stage 3 and stage 4.

I was coming from a place of privilege. I was financially stable, double-insured, and knowledgeable of and eligible for lung cancer screening. I had a history of smoking and a family history, yet I had all these privileges and I was diagnosed with stage 1A lung cancer. It broke my heart when I thought about what these people were going through to even get diagnosed and the journey they had to take to have it treated. My understanding of stage 4 lung cancer is that for some patients, it can’t be cured though it can be managed.

The Impact of Smoking Culture On My Life

When I was about 11 months old, my mother had my portrait taken professionally. I was all dressed up in a pretty pink dress, but I was cranky and fussy. My mother was a smoker and, like other women of her time who smoked, she always had her cigarettes in a cigarette case. She took her pack of cigarettes and put it in my hand to try and calm me down and make me presentable for the photo.

There for eternity is a beautiful professional photo of me holding a pack of cigarettes in my hand. That shows you how culturally acceptable, casual, and normal that kind of behavior was at the time. My mother thought nothing of putting that pack of cigarettes in my hand for this photo.

I’ve seen that picture on and off my whole life. I never thought anything of it until I saw it again post-cancer. My jaw dropped and I was stunned. I started to put so many things together after that.

Why I’m Sharing My Story

Related to my previous point, the people who don’t want me to share my story think that I hurt the community when I do share it. Our goal is to change the public perception of lung cancer and the belief is that, if you talk about a smoking history, you’re not changing that perception.

This is why it’s crucial for me to share my story as well as that picture of me as a baby with a pack of cigarettes in my hand. People who see it can start to understand my childhood, my exposure at such an early age, and the culture and glamorization of the tobacco industry. That’s helping change the public perception of lung cancer.

I don’t have to avoid talking about my smoking history because I was a victim of it. Everybody has to choose to tell their story the way they want to. I’m hoping that those who are feeling guilty can see that if I continue to talk enough, maybe they themselves will start to feel comfortable and talk about their own stories too. If not, that’s their journey and they have to tell their story their way.

I hit a wall and didn’t know if I was right or wrong, but I knew that I wanted biomarker testing. I felt I had to have it in order to feel okay and hadn’t grown in my understanding of that yet. When I went to the American Cancer Society Lung Cancer round table and connected with the community, everybody was singing a different tune.

I connected with a doctor from Johns Hopkins. We set up an appointment and the following week, I went in and he did what was necessary to request my tissue and sent it off to Foundation Medicine to have my biomarker testing done.

What I Want People to Know about Lung Cancer

If you have lungs, you can get lung cancer. That’s the bottom line. It’s not just people with a smoking history who are at risk of getting lung cancer.

Think about testing your home for radon. Radon is the biggest risk factor for people with no smoking history and it’s the second leading cause of lung cancer.

When I first found out I had lung cancer and I found out that others had lung cancer without having a smoking history, I felt incredible shame. Nobody should feel shame because nobody deserves lung cancer.

Smoking is a very addictive habit. There are other risk factors. I had the risk factors of radon and asbestos exposure too. Because I had a smoking history, that does not mean that smoking is what caused my lung cancer.