Caregiver Thought Leader Interview
Carly Ornstein, MPH, CHES
Manager, Adult Lung Health Education
at American Lung Association
Gary Barg: Carly, I can appreciate that you come about your role as a lung cancer advocate like so many of us—as a family caregiver. Can you tell me your own story to begin with?
Carly Ornstein: Sure. When I was in graduate school, my father was diagnosed with lung cancer. I was, of course, really upset. A couple weeks earlier, a close friend of mine had just lost her father, so I had just gone through that with her. It really hit close to home. But also I was angry because my father was a smoker. And his mother had died from lung cancer. And she was a smoker. I had spent almost my whole life trying to get him to quit. It was a really strange experience of being upset, scared and angry at the same time.
Gary Barg: We can tend to blame the person living with lung cancer.
Carly Ornstein: When you’ve never been addicted to something, it’s really hard to understand. I had to learn that this is an addiction. And he became addicted when he was young, before we knew all of the dangers of smoking. It was really hard for him to quit. Going to school in the 90s, we were constantly told, “Smoking is bad for you. And it will kill you.” That’s really scary for a child to hear when they go home and both of their parents smoke. So, I would get really upset. But my emotions really did nothing. In my work with the Lung Association and as I learned more about lung cancer, I recognized how horribly addictive cigarettes are and really empathized with his struggle to quit.
Gary Barg: Speaking of your work at the American Lung Association, I’m really excited about mylungcancersupport.org. Can you tell us about that?
Carly Ornstein: Sure. It is our website designed exclusively for lung cancer patients and caregivers. There was a need for this because lung cancer jargon is very confusing. It’s a very stressful time in someone’s life when they receive this diagnosis. And with all of the confusing information, it is even more stressful. It is hard to have an active role in your care and decision making if it’s hard to understand what everyone’s talking about.
With mylungcancersupport.org, we really were going to try to meet people where they were with easy to understand language. We were going to use videos, images and different graphics to help explain some confusing topics. We also recognized that not everyone seeking lung cancer information is coming to it from the same place. For example, my mother was the active caregiver in my father’s life. In his opinion, my dad’s role was to go to the doctors and do everything they told him to, but he really wasn’t interested in learning much more about his disease. Meanwhile, my mom was looking for all the information she could. So, when you go to our site, you might see things that start off with a list of bullet points if you’re just looking for the takeaways, the top-level information. Then you can scroll down and get more detailed information.
If you only can deal with looking at five minutes of information, because you’re so overwhelmed, we have it. But, if you’re trying to absorb everything that you can, we also have it. And it’s written with the patient and the caregiver in mind.
Gary Barg: One thing that really touches me, and we see it at our Fearless Caregiver Conferences, is the stories from the people living with lung cancer and the family caregivers. To be able to go to this site and hear a story similar to your own, as told by somebody else, is so incredibly empowering, I think that’s got to be helping people.
Carly Ornstein: We have a section of the website where people can share their story, and truthfully, we didn’t realize how impactful it would be. It’s been so wonderful and genuinely therapeutic for those that share their story. Lung cancer is sometimes referred to as the invisible cancer for several reasons. One is that, unfortunately, the survival rate is fairly low, though that’s hopefully changing with our new advances in treatment. And also the stigma. Many people don’t feel as though they want to speak out about lung cancer—especially those with a history of smoking. They feel shame. And so that only perpetuates the stigma more.
By putting a voice and a face to lung cancer, we’re showing that these are the mothers, brothers, fathers, sisters. All these people are real people living with the disease or have lost someone to the disease. It doesn’t matter how you got it or why you got it, you need the support. And there are people that have been through this, just like you have been through this.
Gary Barg: It is a great way for caregivers to be able to understand the process post-diagnosis and share it with their family members.
Carly Ornstein: Absolutely. You might look at a certain section of the website: How to talk to your family about your lung cancer diagnosis. There are also tips on talking to your employer and talking to friends and family. That might be the only portion of the site that you visit for the first month or so. But then you might venture into some of the treatment options information: what to expect from chemotherapy, what to expect from radiation, what to expect from surgery. You might start to look at the survivorship section. We have it all there. You might not know what resource you need until you go looking for it. But it’s there for you on that site. No matter where you are in your journey. And in the coming months, we’re hoping to add some more specific calls to action and things to specifically think about during different phases of the journey. It’s also really important that people ask the right questions so they’re getting the care that they need.
Gary Barg: Once you hear that diagnosis and they’re throwing all these technical terms at you, it’s quite a while before you kind of settle down and are able to hear anything.
Carly Ornstein: Exactly, we have a really nice section of the website called the interactive library. That’s where we house all of our stories. We have videos, interactive infographics and downloadable worksheets. We encourage them to print them out and bring them to their doctor’s appointment, so they can actually fill it out with their doctor. We know people learn in different ways. Some people respond well to videos, some to something more interactive, like an infographic or actually filling out a worksheet. We house those different modalities for people. You can search by type video, worksheet or by topic.
Gary Barg: What would be the one most important takeaway you would like a family caregiver to know about mylungcancersupport.org?
Carly Ornstein: You’re going to have questions and it can be a very, very stressful time. You don’t have to do this alone. The information and support resources on mylungcancersupport.org can help ease it. Find out all the information that you can find out so that you can be the best advocate for your loved one that you can be. Chances are you will have a little more energy to be that advocate than they will. The patient should focus their energy on their treatment and staying well and keeping their spirits up. A lot of that research really does fall on the caregiver. So use trusted resources to help frame that. The Internet can be a very scary place where you can find really bad information. You can also find really good information on the Internet. That’s why it’s important to stick with trusted resources.
Gary Barg: Well, if you see American Lung Association, that’s your seal of approval.
Carly Ornstein: Yes, exactly. It can be a really slippery slope, ending up on Web pages and finding really scary statistics. From my experience, I don’t think that’s helpful. I can only imagine how stressful it is for other people. So my real advice would be to stick with some trusted resources and lean on them. Use them to help you through this.
Gary Barg: By the way, how’s your dad?
Carly Ornstein: My dad is doing great. He just had his scan a couple weeks ago and everything looks good. Everyone always gets a little nervous before a scan. I heard an oncology nurse call it “scanxiety.” But he’s doing great. He successfully quit smoking so we’re really proud of him for that. I’m excited that this holiday season, we don’t have to deal with lung cancer. It’s moved out from the top of our minds.
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