Navigating Lung Cancer: Stories of Support
Watch news anchor and lung cancer survivor Greta Kreuz introduce you to lung cancer patients and health professionals who share their personal lung cancer support stories.
Greta Kreuz: In this program you are going to hear from three people living with lung cancer: Leslie, Alvin and Maria, all of whom have very different stories. They will discuss some of the personal and deeply emotional issues they've faced as a result of their lung cancer diagnosis, and how they managed to handle they challenges they were faced with on their journey. Let's jump right in now and meet several people who, like us, are facing the challenges of lung cancer every single day. We can start at the beginning.
Maria: I don't even like talking about it. I was speechless for a while, and I was trying to figure out, "Okay, when do I tell Greg this diagnosis?"
Greg: I would never forget that day. I was on the corner of 52nd and Lancaster Avenue. Maria called me and said, "I'm at the emergency room." And she went through this, "Come to the hospital." I was like, "What's wrong?" "Well, you need to come to the hospital." I was like, "Maria, tell me what is going on right now." She said, "It's cancer."
Leslie: I knew because I was smoking that eventually I was probably going to get that diagnosis, just kind of didn't know when.
ALvin: My doctor, who has been my doctor for now about 15 years at least, I saw tears, which kind of threw me. She was devastated by the news that she had to tell me I had the lung cancer, from the x-rays and everything, and the doctor that she had had to look at it. I had to go back, because at that particular time they weren't certain whether or not it had metastasized, because I had nodules that showed up on the brain and they really couldn't determine to what extent the cancer had spread. The worst night of my life.
Greta Kreuz: This is the first point in the journey where you start to figure out how to cope with what life has thrown you, and you start to reach out to your support system. But even telling the people who can support you can be a challenge in itself.
Greg: To tell your kids that their mom has cancer, it was wrenching. I can see them, I mean, they crawled up under her like she was about to leave.
Leslie: I did not want to tell a lot of people about my diagnosis, with the position that I was in being a dentist, I didn't want my patients and my colleagues to find out. Some people knew something was going on, but never really knew what. I mean, I have such wonderful patients, the ones who did know were very, very supportive, and very caring.
Greta Kreuz: You may sometimes find that the people you need the most are the hardest to talk to about your diagnosis. But as Leslie pointed out, most people will be very supportive.
Kyra Walters: When patients are challenged with physical issues such as side effects of treatment, there are many emotional challenges that come along with coping. Not being able to do what you want to do or used to do can be very emotional.
Leslie: It's very discouraging being tired. It's discouraging not having the stamina that you're used to having. I am getting some of my stamina back, but I don't think it will ever truly come back.
Maria: The emotional pain is more intense than the physical pain. If I have something planned, I might be in the midst of doing something, and I can feel my body changing. I want to complete this and I want to do it, and I want to get back home. I get upset sometimes, because of the cancer and the chemo, that prevents me from doing it.
Greg: I will tell you, it was difficult initially, when I first saw it, it was hard to adjust to. I mean, it was really, really hard to adjust to. Not only was she losing weight, but all of her hair come out. I don't know which one of the kids it was, but they remarked to us, "Now I got two bald head parents." So you know, we just kind of laughed it off. But it was very impactful.
Ashley Varner: It would be awesome if a lung cancer diagnosis didn't have an impact on everyday life. And wouldn't it also be great if everyone said or did the right thing when trying to help a patient with lung cancer? Unfortunately, life is going to be different now, and I've found it useful for my patients and their caregivers to use the ABC approach, trying to find the new rhythm of their life. Let me explain.
A is for awareness. Being aware that cancer might change relationships or add a new dimension. A neighbor might become a primary caregiver. Or a stranger might become a close confidante. B is for balance. In the beginning a lung cancer diagnosis is a crisis and it demands a great deal of attention. But people cannot remain in the crisis stage and must carve out time that is cancer-free. C is for communication. Communication among families and friends can help make sure you get what you need.
Leslie: One support system that I was very lucky to come across, I had asked the nurse practitioner if she had anyone that I could talk to who had been through the same situation with lung cancer, and she put me in touch with this wonderful gentleman who had been through chemo and been through radiation for lung cancer. He was about a year out of it. We started talking on the telephone, and he was a great sounding board.
ALvin: At first I thought it was kind of strange having a call from someone in the medical field asking you to speak privately to someone else. At first it was a little odd for me. But once we became phone buddies at the time, then I had a desire to want to meet her, to want to know her. She met my wife, I met her sisters and all. Leslie's like a part of the family.
Greg: You really find out who your friends are in situations like this. The community from our school, I mean, every day they would have food here, lasagna, this, this, and our friends that are in our clubs, they would pick the kids up, take our daughter to dance. I mean, everybody just sort of came to our rescue. It was so heartwarming to know that our friends were there for us when we really, really needed them.
Kyra Walters: Patients struggle with a loss of independence. One of the things that can help combat that is asking for and accepting help.
Greta Kreuz: Whether you see yourself as a very independent person like Leslie, or find yourself surrounded by a strong community ready to take care of you, it can still be very difficult establishing a support system that works for you.
Kyra Walters: It's difficult for patients to trust someone else to take care of the day to day routines for their family or their work function, and it's definitely a role change for them. But it's something that's absolutely necessary, so that they can conserve energy just to do what needs to be done to take care of themselves.
Ashley Varner: Setting up calendars online can be an amazingly powerful tool, where you can let your friends know what it is that you need done. It's a wonderful tool for caregivers as well because caregivers then can pick the things that they feel comfortable doing on the timetable that they are able to do them. This allows folks a lot more flexibility in their choosing.
Leslie: My neighbors, they were just absolutely terrific. My immediate neighbor drove me to my chemo appointments. She would go grocery shopping for me. Then my other neighbor was very helpful with sitting here when I couldn't have the energy to get up. She would just sit with me all day if I needed it.
Greg: Things have certainly changed in our family. For example, with her memory, the chemo brain, her short-term memory is not as good as it was before the diagnosis. So sometimes we have to just catch ourselves, and I have to remind the children that, "You know, guys, we have to be a little bit more patient with mommy."
Maria: I wanted them to have as normal a life as they possibly could. It kind of backfired on me because I covered up so much that they really didn't understand what was really going on with me. I would be asking them to do more things, they didn't understand it, you know? So eventually what I did, I got the two of them together, and I said, "I don't think you realize how this situation is affecting my body." And I had to just break it down, "I need you to do more."
Leslie: Another one of my biggest challenges is shortness of breath. You can't do what you're used to doing. The shortness of breath is getting a little bit better, but my stamina is kind of coming back a little bit more. But that's a big challenge.
ALvin: It's very frustrating when my wife and I go to the market, and my wife has to carry the bags, that's a frustration for me.
Greta Kreuz: I know for me and for so many patients I talk to, managing the fear and the anxiety that comes with a cancer diagnosis is one of the hardest parts.
Ashley Varner: Anxiety is a physiologic condition, which is really important to recognize, because, since it's physiologic condition, one of the best way to manage it is by interrupting that physiologic response. Probably the way that most people tell me that works, that's the easiest to learn and the quickest to learn, is to really slow down and focus on their breathing, to be much more mindful about what's happening when you're breathing, and to breathe in, for instance, to slow things down so that perhaps you're breathing in peace or joy or calm.
ALvin: There's an anxiety that comes up just before it's time for me to go back for my visits. It's like everything falls apart.
Leslie: You do start getting very anxious about, what are they going to find? What are they going to say? Then all of a sudden, every time you have a little cough, it's, you know, is the cancer back? Why am I coughing?
Kyra Walters: After someone has been diagnosed with cancer, they sometimes think that a simple cold or a headache or a cough has to relate to whatever their diagnosis is, whether it's a side effect of treatment, or it's a recurrence of their disease. When this happens the first times patients panic easily, call their physician, call their nurse, and ask the questions. I encourage this with patients because you have to go through that the first time and get the answers that you need to alleviate your fear.
Between appointments, patients often have something they term scanxiety, it's that anxiety between finishing treatment and waiting for scans. If they're not in the office weekly visiting with their nurse or a doctor, they're thinking, "What have I done to fight my cancer this week if I'm done with treatment?" So some of the things that I recommend to patients between scans is, whether it be contacting someone from a support group and talking with them about how they felt or how they've dealt with issues between treatment and scans. I always recommend journaling for patients. I feel like if they write whatever's going on in their brain down, it gives those thoughts a place to sleep for a while, so it's not a constant thought.
Maria: Eventually I started going to a cancer support center. That has helped me a lot. I still go. Because it's a group of people who can open up, talk about absolutely anything, nothing is off limits.
Ashley Varner: There are a lot of other tools for managing anxiety. One of the best ones that is really helpful is distraction. For some people it's exercise or dancing, or listening to music. I also encourage people to think about what's worked in the past. The fear of the unknown is one of the challenges that I hear the most about from people diagnosed with lung cancer. These worries and fears may be in the back of your mind, but they don't have to overcome your life.
Leslie: My life has changed. I enjoy my free-time a lot more, and I don't feel like I have to always be running. You learn to appreciate things a lot more that I kind of took for granted before.
Maria: I'm much more reflective now. I appreciate life so much more.
Kyra Walters: Life beyond lung cancer treatment presents its own set of challenges both physically and mentally. Your body has been through a lot. There's some changes that have happened. Give yourself a break. Give yourself time to regain your strength. It's something that'll happen day by day. Give yourself some hope, be gentle with yourself, you can make plans for the future.
Greg: I found myself initially, after the diagnosis, trying to think down the road, you know? It was like, every day we kept getting this bad news, you know, you just didn't know. But we've learned to just take this a day at a time. I mean, when Maria's feeling bad sometimes it gets to a couple of hours at a time and we just, you know, "Just hang in there, it's going to be okay. We'll get through this." And we've made it through thus far.
Maria: One of my goals in life now, I'm going to live to play with my grandchildren, not just see them, I'm going to play with them. When Jordan graduated from high school, I was so excited because that was a milestone that I was here to see, I witnessed it, and I said, "That's just the first."
Greta Kreuz: On behalf of the American Lung Association, thank you for letting us help guide and inform you with this program. It's an honor to hear the deeply personal stories shared here today, and each person shared their story with the intent of helping others facing lung cancer. Remember that everyone's journey is different, but you are not alone on your path.
Reviewed and approved by the American Lung Association Scientific and Medical Editorial Review Panel. Last reviewed November 24, 2017.
Page Last Updated: November 19, 2018