Portraits of Lung Cancer

Daniel, Age 37. Living with ALK+ Lung Cancer. Chalfont, PA

"One day my youngest daughter wanted to dance. So she put on her sister’s old ballet stuff, and started running around the room. She’s only two-- so she’s not fast. But there was a moment when I tried to chase her, and I was immediately out of breath. That’s what brought me in for my first test. The oncologist told me not to research the diagnosis online. But I did it anyway, and I learned how aggressive it is. My mind immediately went to my kids: they’re not going to have a father. The social worker told us how to give them the news-- be honest, find a comfortable setting. But mainly just be honest. We sat them down in the family room, and I don’t even remember what we said to them. Physically I was there, but in my head I was way down the road. Looking at the future. Could anyone else love them like me? Could anyone else make them feel safe? Through all of this, my wife and I have had an agreement. It’s OK to feel down, and cry. But you just can’t stay in that hole. You have to come back out, and find something positive to focus on. And for me it’s always been our kids. They’re beautiful kids. They’re intelligent, they’re loving. And maybe I’m not going to see them graduate, or dance at their wedding. But I’m still able to coach their soccer teams. I can still read them books. So that’s what I’m focusing on. I’m dragging out bedtime just a little bit longer, so we can have a few more minutes every night. Sometimes we’ll go through old videos and pictures on my phone. It’s something we’ve always done. They love looking at themselves when they were super young. But it’s a different experience now. Not for them, but it’s different for me. I used to look at those old pictures, and think: ‘Yah, we had a great time.’ But now I really see them. Everything that’s being displayed: the joy, the unconditional love. All of it. There’s one picture I always stop at. It’s me and my oldest daughter-- at a father/daughter dance in the cafeteria of her preschool. It was one week after my diagnosis, and I remember that night so well. We’re dancing in the photo. But I’m not holding her hands, like everyone else. I’m holding onto all of her.”

Tina, Age 51. Living with Stage 3 Lung Cancer. Darnestown, MA

”It was the only thing that calmed me down-- through it all. My father died when I was ten. I went through infertility. Then when I was finally able to conceive, my daughter passed away soon after she was born. It was just too much to handle. And through it all I had one vice. Cigarettes were my security blanket. So it seems like a cruel joke from God, that now I’d get lung cancer. At least with everything else there was closure. Even with my daughter’s death, there was closure. I know that Natalie is never coming back. But it’s different with lung cancer. It can come back at any time. Right now the treatment is working. But I wasn’t a candidate for surgery, so the tumors are still there. They can grow again. And I have to live with that fear. Having cancer wasn’t even the hardest part for me. At least when I was getting treatments, I was following a routine. There was a team around me. Being a survivor has been much harder, because I’m on my own. I’m trying to navigate this opportunity I’ve been given. It can sometimes feel like everyone else has gone on with their lives. Which I’m happy about, I really am. Because I would never want my cancer to consume my family, or my friends. But sometimes it feels like they’ve gone so far that they’re checked out. And I’m constantly pulling them back in. With my worries. With my advocacy. It reminds me of when I was dealing with infertility. When I was going out of my way to avoid baby showers, and pregnancy aisles. Everyone else around me got tired of it. They moved on. But I didn’t have that choice. And I don’t have that choice now. Because what if there’s one cancer cell— hiding, waiting to bring it all back? I carry that with me. And even worse, I carry the guilt that I brought this on myself. My kids begged me to stop so many times, but I couldn’t stop. It was my one thing. My security blanket. I did quit once. I stopped for nine months, when I was pregnant with Natalie. And I made it for another three weeks after that. Until the day of her open-heart surgery. And I just couldn’t bear it. I had to have just one, because it was the only thing that calmed me down.”

Bonnie, Age 59. Living with Stage 3 Lung Cancer. Davie, FL

”Everyone was amazed at how well I had handled it. There’s this small, copper bell on the wall of the treatment room. And on your last day you get to ring it. It’s a symbol of success. Like: ‘Wow, I effin’ did it!’ The nurses are there, cheering you on. You feel like you’ve won the battle. I still have that picture hanging on my fridge. I look so triumphant. But the happiness didn’t last long, because two days later I got another scan. And this one showed some progression. Suddenly I didn’t feel like a winner anymore. I would need even more treatments. I wasn’t so optimistic this time around. You have so much time to think when you’re lying on that treatment table. I’d do my best to imagine my remission party. I’m a big Florida Keys person, so I’d picture island music, and tiki torches. But there were some dark moments too. I’d be lying there, with all this stuff going into my lung. And I’d think about my grandchildren. Would I be there to see them grow up? And I hate to admit this, but there were even days I’d start thinking about my own funeral: who would be there, what they’d say about me. It was a pretty dark period. My husband was so supportive. But what I really leaned on were my support groups. Sometimes I’d get on these zoom calls, and I’d meet people who had survived for 20 years. They’d be looking back at me, talking to me. Giving me strength. And there were other people in the group who had just been diagnosed. So even though I’d only rang the bell once, I could tell them my story. And give them strength. Whenever I got off one of those zoom calls, I felt like I could conquer the world. I finished my second round of chemo a few months ago. This time I almost didn’t ring the bell. Because it felt a little redundant. Like me and the bell were becoming best friends. So I hesitated. But then I looked at all the other patients in the room. Some of them had just been diagnosed. They were sitting there with a needle in their port, and they were scared. They needed some hope. So I rang that bell. But this time I didn’t ring it for me. I rang it for anyone who needed to hear it.”

Steve, Age 68. Living with ES-SCLC. Franklin, MA

"I was right on the edge. It was up around my lymph nodes. And for a moment they thought they saw a spot on the brain. So I thought I was doomed. I’ve survived two heart attacks. I don’t scare easily. But my mother died of lung cancer, so I’ve seen what it’s like. I was thinking: ‘Yeah, this is it.’ The doctors were more optimistic. They were saying: ‘These days, a lot of times, lung cancer can be treated.’ But I came to peace with what was going to happen. There was a floor below me in the hospital where children were being treated. I felt sorry for them, but not me. I’ve lived a good life. I’ve been married for 43 years, and have three kids, and five grandchildren. I never needed to be a millionaire. Or a pro-athlete. I got everything I ever wanted. The main thing I wanted to do was help my wife. So I went home and got a dumpster, and started cleaning out the garage: all my yard tools, every last nail and screw. It was cathartic in a way. Everything I threw out was one less thing she’d have to worry about. Looking back, I probably could have been more discriminating. I even got rid of the rake. But I was sure I’d never need any of it again. That was two years ago. And you know what? I was wrong, and the doctors were right on the money. ‘Near complete response’ was the term they liked to use. The good reports kept coming in. They’d look at the scans, and they’d come in excited. ‘Wow,’ they’d say. ‘We’re really hammering it.’ These guys are cancer doctors—they don’t excite easily. And I started thinking: ‘Geez, is this possible? Could I outlast this?’ And that’s how I still feel today. I thought there’d be a beginning and an end. But there was just a beginning, and I’m still going. We went to Mexico and I was swimming, and doing things. If somebody wanted to hike up a mountain —I’d sit that one out. But other than that, I do everything around the house. All the yardwork. But I will say, when the weather started getting cold again, and the leaves started falling, I sure wished I had a rake.”

Sarina, Age 38. Living with EGFRm Lung Cancer. Angwin, CA

”My last result said that ‘one of my spots is showing more density.’ That doesn’t sound good, but my oncologist said we just need to wait. For more growth. For a clearer signal. There’s nothing to do but wait. I’m practical. I know how aggressive it is. I know what’s going to happen in the end. I’m trying to trust that doctors and researchers are doing all they can. But it’s hard. And there are definitely days when I question if all the treatments are worth it. Not that I’d ever stop or anything. But if I’m going to die anyway--why am I doing all this? Those are the harder thoughts. Those days happen. But I do everything I can to plow through those days, so I can get to a good day: the days when I’m present, and I’m not thinking about the future, and I can enjoy little things. A good day is a Sunday in the kitchen. My passion is cooking. I can make Bolognese sauce all day, even though I’m not a little bit Italian. I usually like to keep the windows open so a little breeze can come through. There’s an enormous fig tree in our neighbor’s yard. The smell is amazing; it’s not the figs themselves, but the smell of the leaves. It’s perfumy, and enveloping, and calming. I wish I could candle it. The figs always bloom in the summer. Which is perfect for me, because the cancer makes me cold. So on hot afternoons my husband and I will head over to grab a bunch of figs. I don’t even think my husband likes figs. But he’s tall so he can help me. He doesn’t actually pick them for me, but he’ll pull down the branches so I can get them myself. Then afterwards we’ll take them home to make a fig jam. And that’s what a good day looks like. I’m really hoping the spot in my lung doesn’t grow. Because I don’t want to go through treatment again. But I will if I have to. Because I want to have as many good days as possible. That’s what I’m fighting for. Good days. I want to stay alive, really. I want to live. I have no idea how long my life is going to be. But I want to live all of it.”

Natalie, Age 34. Living with Stage 4 Lung Cancer. Atlanta, GA

”I used to have all the faith in the world. I believed that everything is good, and everything is fair, and everything is going to be alright. And I believed in God. I really believed in God. But it’s different now. Everything changed when I heard ‘Stage Four’— it’s like something left my body. And I still hear those words every day of my life. If I wake up in the morning, and look in the mirror, something in my head will say: ‘Stage Four.’ I’ll hear the oncologist’s voice and everything. It’s like one of those movies where people hear ghosts and stuff, so I’m kinda messed up. I seem OK on the outside. I seem positive, and optimistic, so people think I’m doing fine. They tell me: ‘I’d never be able to handle it as well as you.’ But I’m not going to lie, I’m kinda messed up. I’m confused, I’m scared, I’m angry. It’s like: ‘Really, God? Really?’ You’ve brought me this far, and now you’ve given me this?’ I went to church all the time. I was even in the choir for ten years. Mainly because I thought I could sing, but still. I followed the rules. I was a good person. I was blunt, and to the point, but I was a good person. And now this happens? Who are you? I used to pray a whole, whole lot. Not dropping down on my knees or anything, but I was always praying. Like I was talking to a friend, or a family member. But things are different now. God and I have a different relationship. It might be the same for him, but it’s not the same for me. I still say my prayers, but they’re short and to the point: ‘Dear God, thank you for waking me up this morning.’ That’s about as deep as it goes. Because I’m disappointed. I trusted you. I thought you were a healer. I relied on you for so much, and I loved you like I love my mom. All these years you were my best friend. And you do this. But I’m still gonna wait on you. I’m gonna be here. I’m gonna keep waiting on things to get better. But right now, I’m gonna be honest. I’m hurt. You hurt my feelings.”

Heidi, Age 58. Living with Stage 3 Lung Cancer. Greenwood Village, CO

”We were on the speaker phone in the office when we got the diagnosis. They said the prognosis was poor: three to six months. The first thing I did was drop to the floor and let out a primal scream. Then the next thing I did was so bizarre. I thought: ‘My husband doesn’t know how to pay the bills.’ So I started pulling papers out of the file cabinet. I was giving him instructions, and passwords. I think in that moment I was looking for anything I could control. That’s how I’ve been my entire life. Even my journey as a fitness instructor was about control. I lost both my parents to illnesses in their sixties, so I thought: ‘I can keep this from happening to me. I can live this life of prevention.’ I exercised every day. Never smoked. Always had a good diet: low-fat, low cholesterol. I controlled everything I could. So how could I be walking around with late-stage cancer? It was so unfair. My body hadn’t sent me any signals, and now I’m being told ‘three to six months?’ In the beginning I felt so helpless. But I’ll always remember the day I started treatment. Because the minute the nurse put that needle in my arm, I felt this weight of anxiety being lifted. Finally we were doing something. Finally some control. Every week after my radiation treatment, the radiologist took me to the computer and showed me the screen. ‘Look at that,’ he told me. ‘You have a lot of hope.’ When I finished my treatment, I wanted to do even more. I noticed that my hospital lit the building up red for blood cancer awareness. The lung cancer color is white, so I sent them a message. I asked if they could light the building white. The response I received was so humiliating: ‘Our parking lights are white,’ they told me. I felt dismissed, ignored. Once again I felt helpless. At the time my husband had taken up woodworking, so I told him: ‘I wish you could make me a giant white ribbon to hang on our door.’ An hour later he came back with a two-foot tall ribbon. And we hung it up. I felt in control once more. It was something I could do without anyone’s permission. And at the very least, we educated the mailman.”

Bonnie, Age 56. Living with Stage 3 Lung Cancer. San Carlos, CA

”My scan showed a spot on my lung. And my world went dark. I went straight home and got in the shower. It was a trick I’d learned from years of being a single mom: always cry in the shower so no one knows you’re scared. My first husband and I divorced when my kids were very young. No longer having support, I did temp work and cleaned banks at night to get by. It was hard work, but my kids were eating three meals, going to school, and doing well. Eventually I started working as a secretary at an oil company. I kept getting promoted, higher and higher. Until at the age of 56 I had been promoted to president. I had made it all on my own, and felt like I could do anything. That was the year I started having trouble breathing and when I got the diagnosis, I was terrified. I’d watched the cancer movies on TV. I knew how those ended, and thought I was going to die. I went through all the treatments: the chemo, the radiation, the surgeries. I came out with one lung, and one vocal cord. But I made it. I made it through the knothole. When I was sitting in that lounger, getting ready for my first dose of chemo, I made myself a promise. I said: ‘Bonnie, if you make it out the other side of this, you’re going to do everything you can to end lung cancer.’ I’ve spent the last seventeen years advocating for people just like me. I started a foundation and have raised millions for research. But my main goal is to end the stigma. There’s this dangerous idea that lung cancer is just a smoker’s disease. People think that we brought it on ourselves, therefore we deserve it. That stigma is killing us. It’s preventing funding. It’s preventing research. For every $1 spent on lung cancer research, $15 is spent on breast cancer. Lung cancer survival rate is 20% and breast cancer is in the 90’s. I’m not mad about that. I want to be just like them. I want all cancers to be treated equally. So I’m doing all I can. I’m going to keep talking. I’m going to keep telling our stories. Until the world finally believes that we’re worth it.”