Transcription of Healthy Lungs #63
Male: You are listening to the Dr. Lisa Radio Hour and Podcast, recorded at the Studios of Maine Magazine in Portland, Maine. Show summaries are available at doctorlisa.org. Download and become a podcast subscriber of Dr. Lisa Belisle at iTunes. See the Dr. Lisa website or Facebook page for details. Here are some highlights from this week’s program.
Ed: There’s not a lot of excitement when something doesn’t happen, when the water isn’t bad, or where there’s not a food poisoning outbreak, but I think the whole nature of public health is going to be changing and is starting to change.
Rebecca: For this kind of completely uncontrollable thing to happen, with no known cause, was a real challenge for me, and also an opportunity, a learning opportunity, for me to figure out how much inner strength someone can have, and also an opportunity for me to slow down and say, “None of us have control, and that’s okay,” and to embrace that.
Male: The Dr. Lisa Radio Hour and Podcast is made possible with the support of the following generous sponsors: Maine Magazine, Mike Lepage and Beth Franklin at RE/MAX Heritage, Sea Bags, Dr. John Herzog of Orthopedic Specialists, Marci Booth of Booth Financial Services, Tom Shepard of Shepard Financial, Apothecary by Design, and The Body Architect.
Lisa: This is Dr. Lisa Belisle, and you are listening to the Dr. Lisa Radio Hour and Podcast, show number 63, Healthy Lungs airing for the first time on November 25th, 2012 on WLOB and WPEI Radio, Portland, Maine. Today’s guests include Ed Miller, Senior Vice President of Public Policy for the American Lung Association Northeast, and Rebecca Falzano, lung cancer survivor and advocate for Lung Cancer Leaders and managing editor Maine Home and Design Magazine. Most of us spend very little time thinking about the air that we breathe, unless we live in a smoggy area. Here, in Maine, we tend to think things look pretty clean, so things must be pretty clean. It’s interesting because we are the smokestack of the Northeast.
Our area is impacted by particles that come all the way from the Midwest. This is something that Ed Miller, from the American Lung Association Northeast, has been working on for decades. It’s something that the public health world has been working on for decades as well. We’re very fortunate to have come as far as we have in this area. There’s still more distance to be covered. I know you’re going to enjoy this conversation with Ed Miller. Our conversation with Rebecca Falzano is pretty interesting for me because it hit home on a number of different levels. Rebecca was young when she was diagnosed with lung cancer. As a female, and a nonsmoker, this was an unusual diagnosis for her to have, and it’s something that impacted her life and her young adulthood.
She went through a lot. She made it through. Coming out on the other side, she really wants people to hear her side of it. Also, getting ready to welcome a new baby into her life and the life of her husband, Steve Pogson, she definitely comes across with this message of hope. This is also personal to me because my own grandfather died of lung cancer when my 16 year old was a baby. My Papae grew up in Biddeford. He lived there most of his life, and he wasn’t really a cigarette smoker. He had the occasional pipe. He also worked in a fairly industrial town, but it was never entirely clear to us as to what the direct causation was between what he had done in his life and the type of cancer that he had.
What was clear was that this was our Papae. This was our grandfather. It was very difficult to watch him get sick and die quickly, and leave our lives, and leave a hole there. I know I’m not the only Mainer who’s had this experience. I’m not the only person in the world who’s had this experience. It does give me a lot of appreciation for clean air and healthy lungs. That’s why I’m pleased to be able to offer this show to you today, who are listening, our show with Ed Miller and Rebecca Falzano. We hope you enjoy it. We hope you learn something along the way.
One of the first shows we did on the Dr. Lisa Radio Hour and Podcast was a show we called “Breathe,” in which we interviewed Dr. Dora Anne Mills, who was former Head of Centers for Disease Control in Maine, now at the University of New England. We thought it was important to revisit this topic here. It’s November, and we wanted to talk about breathing in air. We couldn’t think of a better person to come in and talk about this than Ed Miller, Senior Vice President of Public Policy with the American Lung Association of the Northeast. Thanks for coming in, Ed.
Ed: Hi, how are you? Glad to be here this morning.
Lisa: Well, I’m doing great. Part of the reason I’m doing so great is because there’s all this lovely clean air that I know that the Lung Association has been working on getting out there for the citizens of Maine for quite a long time now.
Ed: Quite a long time. We actually go back to probably 40 years ago with the Clean Air Act. Certainly, Clean Air Act has a lot of connections to Maine with Senator Muskie being the primary author of that, and then later Senator George Mitchell doing some significant updates to that. Maine has been a leader in the fight for healthy air, and I think we’ll continue to be. We have certainly some vested interest in it. We’re at the tailpipe of the nation. Without the Clean Air Act, we really don’t have a tool to keep our air clean. We could shut everything down in the state and still have pollution problems. That’s why we really do need to concentrate on what happens outside of our borders as well as inside.
Lisa: Well, talk to me about the Clean Air Act for people who are listening right now. What exactly did that mean? What did it bring about, and where did it come from? Why did they think it was important to put that act into place?
Ed: I think we ought to look to Senator Muskie and his vision. He saw a lot of polluted rivers. He saw a lot of polluted air in Maine from our factories. This was something that was common across the country. At the time, people really didn’t understand the health impacts. It was more, in many ways, aesthetic. They didn’t like the smell of people. Anybody that lives in the Portland area can remember that there were some pretty nasty smells in the air here 25, 30 years ago. You don’t get those anymore. The Clean Air Act was an interesting law in that it said, “What are the health standards that need to be met in terms of the concentration of air pollutants in the air that are not harmful?”
The scientists set what those limits were for carbon monoxide, or for particle pollution, or for ozone. Then, they said, “This is the area that we shouldn’t exceed. We shouldn’t have more than this in the air.” Then, separate from that, each state had to come up with a plan on to achieve that if their air was dirtier than that. That took into account things like cost-benefit analysis and what the most effective way to do that was. Some things that people almost take for granted these days were significantly the result of the Clean Air Act. The one I like to use most often is the catalytic converter on our cars.
We’re at a point today, quite frankly, our cars are probably cleaner than our lawnmowers, and certainly cleaner than our boats in terms of air pollution. That’s something we ought to be proud of. It’s been a major advance. It’s been one that has created jobs, created a technological capacity here in this country that’s been sported all over the world, and has cleaned our air and improved our health at the same time.
Lisa: Now, what is it about Maine that causes it to be, what you’ve called, the tailpipe of the Northeast?
Ed: Well, the prevailing winds are west-to-east and south-to-north. The meteorology of this is such that the air from across the country travels our way. As much as it might seem impossible, one of the biggest threats to the air quality in Maine are very, very large coal-fired power plants in the Midwest, and the Ohio River Valley, and those areas that, in many ways, have been grandfathered into under the Clean Air Act, have found ways around cleaning their mess up, delayed as much as possible. They’re still doing this today, trying not to clean up and go on as long as they can. We’re the recipients of this. We’re the ones, this is where the plume drops down. From the air pollution point of view, for particle pollution especially, a lot of those coal-fired plants are a major source of our air pollution.
Then, the other source, particularly in the summer, the ozone problem is one that, to a large degree, is from motor vehicle exhaust, and sunlight and heat. That’s something that comes to us courtesy of Massachusetts, and New York, and the whole eastern seaboard. That’s where the winds prevail. You know that we’ll get air pollution alerts in the summer when we get three or four sunny days in a row with a Southwest breeze, you’re going to have air pollution problems in the state.
Lisa: What does ozone do exactly? I know that people, if you’re watching the news, or you’re reading in the newspaper, there will be an ozone alert. What does that mean to people who are listening?
Ed: That’s a great question. Ozone’s a very intense respiratory irritant we like to refer to as kind of a sunburn on the inside of your lungs. It’s a good analogy in a lot of ways. It’s a good analogy in a lot of ways. One is that it does irritate the lungs, and that chronic irritation can cause problems, cause breathing problems in anybody, not just some people with lung disease. About a quarter of the population are especially sensitive to ozone whether or not they have lung disease. Those folks will experience this tightening in the chest. I remember as a kid growing up on the Jersey Shore, I used to think it was because we were swimming too much. We now know that that tightness in the chest was actually ozone pollution that we were inhaling.
It’s an irritant like that. It’s a cause of irritation to existing people with existing disease, but also people that don’t have any lung disease or heart disease still can be affected by it. Just like a sunburn, two of us can be exposed to the same amount and have very different reactions. I think that’s what’s important for people to understand. That’s why we tell people if you’re a heavy exerciser, or do you do an outdoor work really of any kind, during high ozone days, do that early in the day. Our problem here is worse later in the afternoon. One of the worst things you can do is nice, sunny, hot summer day, go out and bicycle or run at 6:00 at night’s probably not a great idea.
Lisa: I know that you’ve spent time with Deb Dietrich, who is part of the public health ground foundational structure for the state of Maine, who works at Maine Health now. She’s a friend and mentor of mine. I also know that you spent a lot of time with Gordon Smith, who we interviewed on our Future of Medicine show from the Maine Medical Association. Is it gratifying to see some of the work, that you started doing all those years ago, start to come to fruition and to have people finally believe in what you’ve been putting out there for so long?
Ed: It’s interesting. As I get older in this profession, it’s encouraging to see things that really we’ve been pushing for, for decades coming into a time where they’re more valued. I had to chuckle. I wrote an article back in 1977 on the health benefits of raising the cigarette that was published in the Maine Medical Association Journal. The story behind that is a funny one. Governor Longley was looking for a way to fund the first state employee pay increase, but he didn’t want to raise taxes. He asked the Commissioner if anyone could show that raising the cigarette tax would have a benefit on health, so I did some research and found out it could, so wrote up this article on it. He passed the tax, and the employees got their raise.
Now, we know that, for example, raising tobacco tax, one of the most effective and quickest ways to reduce smoking rates particularly among our kids. Some of these things have become much more common knowledge, much more common tools, in the public health toolbox. One thing in Maine that’s never changed, and I think it’s one of the reasons I’ve enjoyed working here so much is that we work very well together. This is a state where people know each other. They care about each other. The barriers among the organizations and various agencies and groups are nonexistent. People really do work very well. I’ve come to appreciate that even more as I’ve worked in other states where people don’t play so well together sometimes.
Lisa: Why do you think that is?
Ed: I think there’s a tradition of that, and there’s an expectation. Just like if you have children and you expect certain things of them, and you’re consistent in that, and people support that, that becomes the culture. I think it is the culture here. Certainly, there’s differences of opinion on things, and that. I know my colleagues, over many years, working, for example, with the Medical Society, with the Heart Association, with the Cancer Society, with the Health Department, we’ve worked very closely for many years on things. I think the issues that we’re dealing with are bigger than any one particular organization can deal with. I know our organization, especially our volunteers, expect us to work together. They don’t, public heath’s not a solo sport. It’s really a team sport.
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Lisa: Has there been a challenge with trying to get people to understand that the Lung Association is more than just lung cancer?
Ed: Well, it’s an interesting question. The challenge for the Lung Association is almost, I don’t know if people think of us as lung cancer. They may think of the Cancer Society, too, sometimes on that. One of our challenges is that we’re more than just tobacco. I think that’s been a very interesting thing. The Lung Association goes back to 1911, we were formed. Unlike the other voluntary health agencies, like Heart and Cancer, we actually formed as a result of grassroots organizations getting together to form a statewide organization. There were, the major killer at the time was tuberculosis. People fought that hand-to-hand combat in communities.
Every county had a county TB association. They formed the Lung Association, or at the time the TB Association around 1911. That was a major killer. That was our focus. The name changed a number of times over the year. In fact, the Lung Association was a Public Health Association from 1920 to almost 1950. That shows you our organization always had a very broad base of concern around public health issues. Then, in the 60s, I think we entered into our second phase, which is really tobacco. We’re obviously still into that. We’re still into tuberculosis to a degree. We don’t just get rid of it. It’s an add-on. Now, I think the era of tobacco, we’re hopefully winding down. We’re still active in it. We’ll continue to be.
Our concern right now, and the major threat to lung health in this state and in the nation is around healthy air. That’s really going to be our focus, I think, for at least the next 50 years and keeping and making sure that the air we breathe is healthy.
Lisa: Talk to me about indoor air quality. You’ve mentioned some of the things that we think about for outdoor air particulates, and ozone. What about indoor air quality? Why is this an issue in Maine?
Ed: Indoor air quality in Maine is an issue for a number of reasons. One is it’s cold outside, and we spend a lot of time inside. That’s one thing. The second is that we live in a climate where, looking around this fall, we had a lot of rain. We’re not in a desert climate. That kind of climate, particularly when you also have some warm weather, you can end up with some mold problems. Mold is a problem in many indoor environments in Maine, and usually the result of leakage into the building or poor design. Another serious problem and in fact one that we’re also working on is radon. This is an odorless gas that is harmful to health. It’s the second-leading cause of lung cancer after cigarette smoking and second-hand smoke.
Radon’s a big problem. The good thing about radon is that it’s pretty easy to get rid of. You can do a test. You can fairly inexpensively get rid of the radon. If you’re building a new home, it’s very inexpensive to put radon protection in that new home. That’s another indoor problem. Then, one that people perhaps don’t think about as much I guess I should just back up and say a major indoor air pollutant is if anybody’s smoking inside the house. That goes without saying. That’s probably one of the worst things that people can do. Fortunately, a lot more people in Maine are smoking outside. Even if they’re smoking at home, they’re smoking outside and not in their house, or their apartment, or any other kind of building like this.
Another area where we have some concern is around wood smoke. Maine has a lot of old wood stoves that date probably from the 70s when we had the initial energy crisis, and people expanded the amount of wood burning. There’s always been a lot of wood burning going on, but they expanded that. Part of the problem is these old wood stoves produce a lot of particle pollution inside the house. It’s not even the stuff that you see. It’s the very, very fine particles, that you don’t see, that are the danger. We’ve been working around the Northeast, and we’ll hopefully being doing some work in Maine on programs that change out old woodstoves for new woodstoves.
The new woodstoves, particularly the pellet stoves, there’s a 70-80 percent reduction in the amount of particle pollution inside from these. It’s significant. If people are considering, as we go into winter, changing out their stoves, they’re going to have a lot of benefits. They’re not just going to have the benefit of less outdoor pollution that they’re creating, and the higher efficiency, and being able to save on wood or pellets, but they’re also going to be significantly improving their indoor air. Those are probably the major indoor air problems in Maine.
Lisa: Is there an issue with VOCs, or volatile organic compounds, and building materials? Has this been something that you’ve seen happen?
Ed: I think people need to be careful about the building materials. They need to be careful about what they put into their homes, and how they perhaps renovate their homes. We’ve had, in the past, problems with people renovating around lead paint, and actually causing more problems than perhaps they even knew about. Fortunately, these days, we’re getting a lot more products that are low VOC. You can have paints, for example, that it used to be you’d paint a room, and you’d have to evacuate the house for a few days. Now, you can paint a room, and you could be in that room that evening. There are some products that I think people are getting smarter about the use of various products indoors.
We have a partner organization we do a lot of work with, the Maine Indoor Air Quality Council. If people are interested in particularly residential air quality issues, and to some degree commercial as well, Maine Indoor Air Quality Council’s a great resource. They have a great website. People can Google that and find out a lot more in this area.
Lisa: You’ve describe the challenges of being part of a public health organization that focuses on something that’s essentially odorless and colorless, and something we take for granted because we breathe it into our bodies. Well, hopefully it’s odorless and colorless.
Ed: Most of the time, yes.
Lisa: I know that there are some events that the Lung Association does to raise awareness. One of them is the Trek Across Maine. That takes place, I believe, in June.
Ed: In June. Father’s Day Weekend, yes.
Lisa: It seems to have really taken off.
Ed: It’s remarkable. I have the good fortune to have been working on the Trek Across Maine for 26 of the 28 years. I always say that it’s way more than a bike ride. This has been a way that the Lung Association has been able to recruit volunteers, to identify really impassioned people for our mission, to identify and recruit people who work with us year-round to really push the mission of the Lung Association and be our eyes and ears, and boots on the ground, throughout Maine, and really throughout the country. There are usually people from 28, 30 states, participate in this event. It’s a great event. It’s a wonderful experience.
It’s a very emotional experience watching people cross that finish line in Belfast, and just their accomplishment. This isn’t like waking up one morning and deciding you’re going to go do a two-mile walk. This is 180 miles on a bike saddle here, going uphill. Despite the fact that the sub-context of the Trek is from the mountains to the sea, it is not downhill by any stretch of the imagination. You can ask anybody that’s done it. It’s been a great way for us to get our message across. It’s been a great way for us to influence families. There are a lot of families that do this. We’re working now on three generations of people who have done this trek. It’s remarkable.
It raises almost two million dollars. It’s the biggest fundraising event in the American Lung Association nationwide. There’s nothing bigger than this throughout the country. It’s really a source of pride for Maine, and for the LA of the Northeast, that this event has been going on as long as it has, that it has grown from the first group of 100 people that raised $50,000, and rode the last day, rode 100 miles from Pittsfield to Bar Harbor in the rain. Remarkably, six or seven of those folks are still riding with us, and have ridden every single ride for 28 years. That’s a testament to the fortitude of people that do this event.
It’s great because it’s an event that raises money, certainly, but it also demonstrates our mission in many, many ways. It’s been a great fit. I’d be remised without tossing out a kudo to Peter King, who is the originator of Trek Across Maine, still here in Maine. It’s been an idea, and an event, that’s had many, many people contribute to its success.
Lisa: You also have an interesting and unique event, I believe, coming up in which we have done well for the state of Maine, out of state. Is that right? Firefighters?
Ed: Yes.
Lisa: Tell us about that.
Ed: Well, down in Boston, at 1 Boston Place, which is one of the taller buildings in Downtown Boston, which incidentally, when I mentioned working for public health in the past, happens to be the same building I worked in in the 70s when I was in Boston. It’s a 41-story building. We do a stair climb there. It’s a timed event. There are teams. There are individuals that do that. They climb up, as fast as they can, 41 stories. It’s two events. One event is for the general public and the teams, and they do their thing usually until about noon-time. Then, following that, there is an amazing, just amazing competition among firefighters from all over New England who, in full gear including the Scout packs, are heading up those corridors up to the roof of that building.
Anybody who knows fire departments know that they are a bit competitive, should I say? Portland has been just a great team. They’ve won a number of years. They’re battling the folks from Boston, and all over the Northeast at this point. It’s a fun event. It takes place in early February. You can go on our lung site, our website, lungne.org, and get the dates, and how to participate in it. It’s a lot of fun. There’s a lot of people from Maine that go down do it because it’s very unique.
Lisa: There’s also a phone number that people can call to get in touch with your organization.
Ed: Sure, 1-800-LUNG-USA is a easy way to get in touch with us. As part of that number, you’ll be prompted, if you want to talk to our Lung Help-Line, we have a live healthcare professional that’s there to speak to you about any aspect of lung disease. It’s either a respiratory therapist or a nurse that can answer your questions. It’s a great service. We have people from all over the country that are calling that number and getting information on how to improve their health.
Lisa: We’ve been speaking with Ed Miller, Senior Vice President of Public Policy for the American Lung Association of the Northeast. Thanks, Ed, for all the work you’ve done bringing clean air into the lungs of our Mainers. Thanks for coming in and talking to us today.
Ed: Well, thank you very much for inviting me and having this opportunity to talk with you.
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Lisa: As part of our Healthy Lungs show, I thought it would be interesting to bring in an individual that I’ve gotten to know over the past year as we’ve taped our show, the Dr. Lisa Radio Hour in the studio of Maine Magazine. It’s also the studio right next door to Maine Home and Design. We have, coming in to talk to us, the Managing Editor of Maine Home and Design, Rebecca Falzano, who also has a very interesting back story very much related to lungs and breathing, and lung health, as a lung cancer survivor herself diagnosed in 2010, and current, I guess I’ll say, advocate for Lung Cancer Leaders. Thanks for coming and spending some time with us, Rebecca.
Rebecca: Thank you for having me.
Lisa: Now, people who are listening won’t be able to see Rebecca, but if you’ve ever read Maine Home and Design, you’ve seen her picture and you know that she’s young. You’re in your 20s still?
Rebecca: Thirty-one, actually.
Lisa: Just out of your 20s.
Rebecca: Yes.
Lisa: You were diagnosed with lung cancer in your 20s.
Rebecca: Yes, I was 28.
Lisa: Tell me about that. What was that like, to get a diagnosis that’s usually associated with being older and being a smoker, and you were a young woman and nonsmoker?
Rebecca: Right. Well, in 2010, I was 28. It was, I think, five months before my wedding when I was diagnosed. I had never even so much as touched a cigarette, so it really came out of the blue for me. I’d been waking up with this wheeze, and a cough, and my breathing was just not right. I had been diagnosed with asthma many years before that. I just assumed it was that acting up. I saw an asthma allergy specialist here in Maine. He tried me on every inhaler on the market. I would just go in and say, “I still don’t feel right.” This happened for months. This went on for months. Finally, he said, “We need to send you in for a CT scan.”
Thank God he did because sure enough I had a cancerous tumor on my lung. It was just shocking to get this diagnosis. I think cancer is something that no one expects to get, I think, especially at such a young age. I had all the misconceptions about this disease that so many people have that it affects older people, that it’s a smoker’s disease. It really was out of the blue for me and my husband-to-be to deal with this.
Lisa: You had just recently moved to Maine to, I think, to take this job. Is that right?
Rebecca: That’s right. We moved from New York City for a change of lifestyle. We really wanted the fresh air. It’s kind of ironic because I was diagnosed with asthma in New York, and moved to Maine, and it got worse or so I thought it was my asthma getting worse. It was definitely a challenge having moved here. We didn’t have any family here and just getting our bearings in this new place, and then being hit with this illness.
Lisa: How did your friends react when you told them that you had lung cancer?
Rebecca: I think everyone was pretty shocked as much as I was. They were incredibly supportive. One of the things that my husband and I always say is that we left our families to come here, and how much we miss our families, but really our friends here have really become like family to us; our colleagues, our co-workers. It’s been incredible. Everyone was very supportive. In a lot of ways, it was an opportunity to have this discussion, which I felt like no one was really talking about this disease, especially in terms of women, and especially in terms of nonsmoking people. It was an opportunity to have that conversation with friends, and bring some awareness to the issue.
Lisa: As a managing editor, your background is writing, and thinking, and putting thoughts on paper. Maybe this body thing, not as much? How was that, to feel like your body had somehow done something that didn’t really make a lot of sense? It was irrational and you couldn’t really think through it in some way.
Rebecca: I would say that I’m someone who is very much, or at least I like to think I’m very much, in control; very type-A personality. I’m a researcher. I’m, like you said, a thinker. For this completely uncontrollable thing to happen, with no known cause, was a real challenge for me to try and get my head around it. Also, a learning opportunity for me to figure out just the limits of strength, or how much inner strength someone can have, and also an opportunity for me to slow down and say, “You don’t have control.” None of us have control. That’s okay and to embrace that. Of course, at the time, I wasn’t really interested in embracing it. I was pretty devastated and terrified, but now I have the benefit of hindsight and look back and say, “That really was an opportunity.”
Lisa: What types of things did you do when you felt out of control? How did you, I don’t know, manage that sensation?
Rebecca: I Google’d a lot. Against the advice of all of my doctors. Like I said, I’m a researcher at heart, and a reporter, and I crave information and knowledge, so I did a lot of late-night Google’ing when I couldn’t sleep. That’s where I really discovered some of the really startling statistics that I had no idea about. I can remember lying awake at night, and being on the Internet, and finding these numbers. First of all, I had no idea that lung cancer kills more people than any other cancer. I didn’t know that. I didn’t know that it killed 70 percent more women than breast cancer, and uterine cancer, and ovarian cancer combined. It just shocked me.
I think the most shocking thing, though, was just how underfunded it was, and also that the five-year survival rate has just stagnated. It’s where it was well before I was born. That was unacceptable to me. I remember finding this article online, by this guy named Rob Densen. Rob works for, actually, Rob heads up an advocacy-marketing firm in New York. His wife has Stage 4 lung cancer. He wrote this really moving piece in the Huffington Post about the disease and how it’s affected his family, and talking about the numbers that I had just researched. I felt, first of all, such a sadness for that, for what he was going through, and what so many people were going through, but also this amazing sense of relief, in a way, and hopefulness that he was onto something here.
He was paying attention and his job was to help other people pay attention. I reached out to him, and emailed him, and said, “What can I do?” He flew me down to New York. I got to meet his daughter, Ariel, who’s my age. It’s incredible what they’re doing. Their family has embarked on this campaign, called Lung Cancer Leaders. They’ve put so much of their own time and financial resources into it. They just let me in on the ride a little bit. I was so impressed. Ariel and I marched down to Times Square, and met with any women’s health editors that we could get to meet with us at Conde Nast, and Hearst, and all these big magazine companies, and sat down with them and pitched the story, and the story of lung cancer in women.
It was just a really incredible experience for me. I was just so grateful for all the work that they’ve been doing, and continue to do, for this community that I’ve found myself suddenly a part of.
Lisa: Describe Lung Cancer Leaders a little bit more for me. What is the main goal of the Lung Cancer Leaders Organization?
Rebecca: The mission is to reverse the stigma surrounding lung cancer. That stigma is that, somehow if you’ve smoked, you somehow deserve this disease, which is of course unfair and not true. Their mission is to raise awareness. They have three partners that work with them, the National Lung Cancer Partnership, the American College of Chest Physicians, their OneBreath initiative, and also Uniting Against Lung Cancer. With these three partner organizations, they have this really great website that’s a great resource. There’s a lot of statistics on there, videos.
There’s also a place where you can sign a petition for the Lung Cancer Mortality Reduction Act. There’s ways to get involved. They have a very active and engaged Facebook page as well, which has blown up. I think they’re at 50,000 fans now, and growing. These people have shared so many personal stories. It’s really a great not only a resource, but a place to go to for support.
Lisa: You shared your story, I believe. I think I saw a video of you doing it.
Rebecca: I did.
Lisa: This is available on their website?
Rebecca: Yes, lungcancerleaders.org.
Lisa: How was this for your husband, Steve. By the time this airs, it’ll be very apparent that you’re quite pregnant, and you’re going to have a baby in January. Well, not to the listeners, but obviously people who might see you on the street. How did this feel to him to have a young, almost wife, and then wife, who was going through this really significant, life-changing, life-threatening illness?
Rebecca: Steve, I think, was probably more terrified than I was, but couldn’t show it. I think he felt he had to be strong for me. In many ways, we’ve joked that we were married even before we got married because our vows played out in the months that preceded our wedding, in sickness and in health, all of it. He was incredible source of strength and support. Both of our families, alongside him, they were there every step of the way. I can’t imagine going through that without someone that supportive. I was so grateful to have that, and also to have a second set of ears and eyes when I would go down to these doctor’s appointments, such a scary thing.
Half the time, you just don’t know what they’re saying to you. Everything is moving so quickly. Having not only that emotional support, but logistically, getting me down there, and listening to the doctor, and being able to digest, and translate sometimes, and remember questions that I had forgotten. I think having an advocate like that is hugely important when you’re going through something like this.
Lisa: Was it also interesting because you weren’t quite married yet, and you had your family that had always been your caretaker, and now you have this guy who isn’t quite your husband, and he had to almost be a go-between at times? Was that interesting?
Rebecca: Yeah. Talk about commitment, a test of commitment. We had been together for so long that it was, I didn’t expect it to go any other way. I knew that he would be supportive, and wonderful, and it would be fine. It really, especially for someone like me who, again, is very much in control. I tend to joke that I’m a control freak. Having this crazy thing happen. I was not always in the best of places with it. There would be moments where the smallest thing would completely launch me into this hysterical fit. It really wasn’t about the fact that I stained my shirt, for example.
It was about all of this happening. It was easier to pinpoint and focus on something small that had happened, and get upset about that in many ways, than to open up the floodgates of emotion, and fear, and anxiety, about this much greater thing that was happening. He dealt with a lot of that, very well I might add.
Lisa: Were you surprised when you were finally able to get pregnant, when you finally got to the other side of this and said, “Oh my gosh. We have a real life. We got married. We’re going to have a baby. We’re going to actually do what we had thought we were going to do in the beginning.”
Rebecca: It was amazing. The human body is incredible. The fact that I could have this happen, go through surgery, a few different kinds of surgical procedures in fact, in addition to major lung surgery, heal, get married, dance at my wedding, and then two years later become pregnant with no issue whatsoever was, amazing to me and surprising. It’s nice to get some positive medical news for a change. I remember going to our first appointment and Steve came with me. He just looked at the doctor. He had this, I think we both still have a little bit of posttraumatic stress from all these doctor’s visits and medical things. He just said, “I just can’t believe that this is, this is a happy, positive thing. We’re here for happy news.” It’s an incredible gift.
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Lisa: What do you think you’ll tell your baby once your baby is old enough to be a little kid, or an older kid, about some of the lessons that you learned regarding, I guess, this whole miracle-of-life piece?
Rebecca: I haven’t gotten that far yet. I’m still, I think, trying to process it myself. I think I go back to this idea that I hesitate to use the word “gift” because people who are suffering through any kind of illness or cancer, when you’re in the middle of it, it is not a gift. It’s a terrible thing. I have this hindsight, and the benefit of health, and a good prognosis, so I can look back and say, “That was incredibly difficult and scary, but I’m so lucky.” I think this gratitude for everyday is something that I hope I can impart onto our kids someday. I hope that I can keep it in the forefront of my head. It’s so easy to get caught up in your everyday life, and just getting through the day. What an incredible journey this was, and how lucky am I that I’m here, and that I have this great prognosis?
It’s not the case for so many people with this disease. I hope that that is what I can share. Also, I think one of the things is that when I was in the thick of it, and I was certainly not strong enough, or even in the mindset to even think about someday advocating, being an advocate for this. I was so grateful that the people who were fighting the fight, and who were acting as my voice. I hope that I can continue to do that. That’s going to be important to me in the coming years to continue to fight for the people who can’t, the people who have lost people, or are suffering and are really sick, and don’t have the energy.
Lisa: Do you think that it is maybe interesting in a bigger-picture way, that younger people are getting this disease and hopefully getting cured from this disease, and can act as more of a voice, as opposed to the people who traditionally had gotten this disease who were older, and who didn’t have that many years to live, and maybe couldn’t be advocates for themselves? Does it seem an interesting twist of fate that now this younger generation is able to actually go out there and provide advocacy where it didn’t exist before?
Rebecca: That’s a really good point because I think part of the issue with lung cancer is that it is such a pervasive disease so that by the time many people are diagnosed with it, it’s too late, and they’re in the stages where they don’t have the energy to fight. They don’t have the energy to be advocates. In many ways, being younger was an opportunity for me in having a lesser virulent form of the disease. I was able to be that, help be a voice for people who are not. Hopefully, I certainly hope that – I don’t want more and more young people to be getting this, but it seems like that is happening. Hopefully that will help the movement, put some more energy behind that movement.
Lisa: It was also fascinating to me to hear that the type of cancer that you have is not a type that is very common. In fact, it’s kind of – I think you told me it was an endocrine-related tumor. There is this link between things in our environment and what’s going on with our endocrine or our hormonal systems in our bodies. I’m wondering if you’ve had any thoughts about environmental health, and the health of the air around us, and what type of an impact we could be having on that.
Rebecca: I think when you get a diagnosis like this, the first thing you want to is find some kind of causality or correlation. That’s so hard, as you know. My immediate thought, and even my surgeon half-jokingly said to me, “Have you been around some pollutants? What have you been doing?” I hadn’t. Again, I’ve never smoked, and I was never really around smoke. My childhood home was free of radon. That’s a huge thing, especially in Maine. It definitely was on my mind. There wasn’t -we couldn’t find any link. Then, of course, it becomes, well, could it be genetic? There’s no, it’s very hard to tell. What I’ve just tried to do is, of course, when my husband and I bought our first house, I immediately had the radon checked but you’re out in the world.
There’s only so much you can do. You just have to really be aware of the dangers, and do your best to eradicate them. As it turns out, the house that we did buy did have a radon issue, so we had that mitigated. I was a little crazy about that, making sure that got done, and went to great lengths to get the best kind of system. I definitely think environment is huge. It makes you wonder, especially with this happening more and more with young people, and nonsmoking people, what is going on. I’m hoping that there will be funding there, and efforts to really research this and figure it out.
Lisa: One of the things that I noticed because you and I are friends on Facebook, and I’ve known you for, actually, more than a year now. One of the things that I noticed is that you were actively soliciting money to do a Heart Walk. There was a picture that you put up, I think, after the last Heart Walk, of somebody that was close to you that was impacted by heart disease. It was a surprising photo. It wasn’t a photo of your grandmother or an older person.
Rebecca: Yes. Actually, two good friends of mine tragically passed away within three months of one another last year, last summer. Both of them had just turned 30, or were about to turn 30. It was just a shock, completely devastating. One of them was on vacation in Bar Harbor, and she passed away in her sleep next to her husband. The other one, a very similar sudden death that we’re thinking had to do with heart disease, kind of unclear, but our friends have rallied around this cause. Every year we participate in the Heart Walk down in Boston, and try to raise money for cardiovascular disease.
Again, it’s one of those things that can affect anyone, like lung cancer. If you have lungs, you can get lung cancer. If you have a heart, you can get heart disease. It was so devastating to lose someone to this, someone so young, times-two, in such a short period of time. They were good friends. These aren’t two separate friend groups. This is in our circle. It was really hard and eye-opening. Again, the whole idea of life is so fleeting. I think when you’re younger, you tend to think you have this endless time. For me, personally, having this diagnosis, coupled with losing two good friends at such a young age, was just, again, another opportunity to really value everyday as sacred.
Lisa: Did it seem strange to you that you had lung cancer and you survived, and these two young women had heart problems, heart disease, and they did not?
Rebecca: Yes. They had been so supportive of me when I was sick. To lose them so suddenly out of the blue, it was very hard. It never makes sense why them and why am I okay? You can go down the rabbit hole of questioning, and guilt, or any number of emotions.
Lisa: For people who are maybe still stigmatizing lung cancer patients, and still expecting they must be smokers, or expecting that they must have done something wrong, what would you say and how do you think ? What are some words you could use to shift their mindset?
Rebecca: I would say that if you have lungs, you can get lung cancer. It’s as simple as that. I think it’s really unfair to ever blame someone going through an illness. There’s so many lifestyle decisions people make everyday that may, or may not, contribute to an illness. You would never say to someone with skin cancer, “Wow, you shouldn’t have gone to that vacation in Cancun for three weeks.” You would never or someone with any kind of heart disease. “Oh. Did you eat a lot of meat?”
Lisa: Well, you’d actually be surprised at the number of people who are very judgmental about illnesses in general. I think the point is very well made, but I think lung cancer is especially stigmatized.
Rebecca: It’s so unfair. No one deserves anything like that. I would say I think one of the biggest things is I’ve at least taken away is never ask someone who tells you they have lung cancer, “Oh, did you smoke?” Never ask that. So many people asked me that. It doesn’t matter. I didn’t happen to, but it doesn’t matter. Even if I did, does it make a difference?
Lisa: Rebecca, how can people find out more about Lung Cancer Leaders?
Rebecca: They can visit lungcancerleaders.org or find us on Facebook at Lung Cancer Leaders.
Lisa: I would like to point out, also, that people can probably follow your life a little bit by going to the 48 hours Maine site, because I know that you spent some time in Kennebunkport last spring. It’s likely you’re going to be doing this again, with or without baby, probably. I think that it would be very interesting for people to actually find out a little bit more about you. Where can find out more about Maine Home and Design and Maine Magazine?
Rebecca: Mainehomeanddesign.com and themainemag.com.
Lisa: Well, we’ve been speaking with Rebecca Falzano, who is the Managing Editor for Maine Home and Design Magazine, sister publication to Maine Magazine, which is where we tape the Dr. Lisa Radio Hour every week. Rebecca is a lung cancer survivor, and an overall really inspirational individual. We’re appreciative that you’ve come in and spent some time with us today.
Rebecca: Thank you so much.
Lisa: This is Dr. Lisa Belisle, and you have been listening to the Dr. Lisa Radio Hour and Podcast, show number 63, Healthy Lungs airing for the first time on November 25th, 2012 on WLOB and WPEI radio, Portland, Maine. Today’s guests included Ed Miller, Senior Vice President of Public Policy for the American Lung Association Northeast, and Rebecca Falzano, lung cancer survivor and advocate with Lung Cancer Leaders, and also Managing Editor at Maine Home and Design Magazine. For more information on our guests, and for extended interviews, visit doctorlisa.org. This show, and all past shows, may be downloaded for free through iTunes. We also urge you to like our Facebook page, and sign up to get our regular feeds.
As we head into December, and the holiday season, I hope that each of you who are listening will take a moment to take a deep breath and enjoy the fresh, clean air in Maine, or wherever you are. Enjoy the fact that you can breathe and that you are alive. This is Dr. Lisa Belisle. Thank you for being part of my world. May you have a bountiful life.
Male: The Dr. Lisa Radio Hour and Podcast is made possible with the support of the following generous sponsors: Maine Magazine, Mike Lepage and Beth Franklin at RE/MAX Heritage, Sea Bags, Dr. John Herzog of Orthopedic Specialists, Marci Booth of Booth Financial Services, Tom Shepard of Shepard Financial, Apothecary by Design, and The Body Architect. The Dr. Lisa Radio Hour and Podcast is recorded in Downtown Portland at the offices of Maine Magazine on 75 Market Street. It is produced by Kevin Thomas and Dr. Lisa Belisle. Audio production and original music by John C. McCain.
For more information on our hosts, production team, Maine Magazine, or any of the guests featured here today, visit us at doctorlisa.org. Download and become a Podcast subscriber of Dr. Lisa Belisle through iTunes. See the Dr. Lisa website or Facebook page for details.