Writer Doug McNamee talks about how he coped with his father’s mesothelioma diagnosis, and what he found helpful along the way.
John Maher: Hi, I’m John Maher. I’m here today with Doug McNamee. Doug is a writer whose father was diagnosed with mesothelioma in 2008 and passed away in May of 2009, which led Doug down a path of researching mesothelioma and asbestos, which has continued to this day. Today, we’re talking about tips for families on coping with a mesothelioma diagnosis. Doug, thanks for joining me.
Doug McNamee: Thank you, John. I appreciate it.
How Did You Process the News About the Diagnosis?
John: So, Doug, when your dad was first diagnosed with mesothelioma, how did you start to process that news?
Doug: Well, I think after the initial shock and being dumbfounded…I think dumbfounded was a pretty accurate description of how both my mom and I felt about it. My mom probably reacted on a more emotional level, but for me, I was just in a state of shock. So, I don’t think I really processed it. I think I just wanted to know what it was and how my dad could have ever been exposed or have cancer because he just seemed like somebody…of all the people around who get afflicted with things and you can understand it, I guess I just was having a problem understanding it with him because he cared so much about his health and looking after himself.
John: Right. And as you looked into this, you found out that your father had served in the military on a Naval vessel and asbestos had been used on the Navy ship. And he was an engineer, so he was in the mechanical rooms where there was asbestos on all the pipes and things like that and that’s how he was exposed to it. And of course, it didn’t come to light until many years later, as happens with mesothelioma. The initial exposure was years prior and then all of a sudden you get this cancer and you wonder where it possibly came from, and it was from this exposure from many, many years ago. Right?
Doug: Exactly, right. Yeah. He was 18. And the weird thing about this cancer, when I started to research it and started to really, as you said, start processing it, I found out that a lot of times that this cancer can sit in your body dormant for 40 or 50 years before it starts to make its effects known. And the other thing I did learn, too, is that it doesn’t matter — of course my dad, because he was an engineer, he was exposed frequently, he had a wide exposure — but even somebody who supposedly, they say, I remember reading this in a book which said dime size, the size of a dime, just a little bit of an exposure to asbestos, can basically bloom very slowly over time to take over your lungs.
And the other thing I suppose that I learned in trying to process and understand what mesothelioma was, what it is, is that there’s your lungs and then there’s a lining sort of that holds your lungs together. And when you get exposed to asbestos, that kind of lives or breeds in that lining that goes around your lungs. So when my dad eventually had his surgery, that was one of the things that was removed. So what was basically holding his lungs in his body after that was sort of a netting of some sort. I don’t know exactly how to describe it, a netting or sort of like…it was a man-made kind of thing that kept his lungs in the right place so that he could breathe.
Doug: But that was the thing, that I had no idea that it was something like this. Again, it was just the initial shock of learning this and learning…I knew about my dad’s Naval service because he talked about it frequently. If you got him talking about it he would talk, he had funny stories about it. And so, I mean, when this happened I think he was just as upset to realize that’s how he contracted this. I mean, because this was a part of his life that he really appreciated.
John: And how old was your dad when he was diagnosed?
John: 67. And he was 18 when he was first exposed, when he was in the Navy, and then he was 67 when he was diagnosed?
John: So, it had been 50 years, like you said.
What Stages of Grief Did You Go Through?
John: So, you mentioned that at first you were kind of in shock about the diagnosis. That’s obviously one of those first stages of grief that they talk about, is that shock. What were some of the other stages of grief that you went through as your father was battling this cancer?
Doug: Well, I suppose, I don’t know if this is really a stage of grief, but I mean just that feeling of helplessness, that I wanted to help my dad, but I didn’t know how to. And of course I just felt sadness for my mom who was just beside herself, and she was just lost for my dad because they had been married for 47 years. So, many things were impacting me I suppose.
John: And so, what solutions did you seek at the time?
Doug: Well, once my dad had the initial surgery…because he couldn’t breathe, and that’s why they ended up draining this four liters of fluid around his lungs, because basically — I’m going to get a little medical here, but I’m not really a doctor — but I mean, as far as my understanding is that the linings kind of allow the lungs to contract and that once somebody has asbestos it basically shuts down that process and the fluid starts to build up around the lungs. So my dad did have four liters of fluid drained off of his lungs, which also is like, when you think about four liters of fluid, you think about like those large…the only thing I could compare it to is like those liter Coke or Pepsi bottles you see in the grocery store, how much fluid that was.
What Resources Helped You Process the News?
John: So, one of the things that you did was doing some research about asbestos and mesothelioma. And did you find in doing that research and looking into it that that was able to help you process what was going on?
Doug: Yeah, I did. And I found that there were some resources out there for people going through this. And there were some places in the country that specifically knew how to, or this was more of their specialty for treating this kind of cancer because the one thing, and of course remember that this was 13 years ago when my dad was sick, the knowledge around mesothelioma was still pretty low. I mean, people just didn’t really still understand or even knew what it was. And they also didn’t really know how to treat it. I remember the doctor saying, “Well, your dad’s probably going to have to go see some kind of a specialist because this isn’t something that…” because this was a hospital in Dayton, Ohio, which is not a super small town, but it’s a small city and they didn’t have the resources there to treat my dad.
So, I remember the doctor saying that my dad would have to seek out some kind of specialist. So maybe I was looking into that too and looking into different things that my dad could possibly look into, all the while realizing and knowing, the way my dad was, that he was a very independent person and he was going to do what he wanted to do. So I would dig up some things for him and I left him with things to think about. He chose the path that he did. But I can’t say that if he went to more of a specialized place outside of Ohio that he would’ve had better results or he would’ve had a better quality of life.
John: Right. So he made a decision to stay close to home and be treated there.
Doug: Primarily because of his mother, because his mother was in Columbus and he wanted to stay close to her while this was going on, so that she didn’t have to travel to see him in a hospital or something. So that was one of his motivating factors for not going anywhere else.
Mesothelioma Applied Research Foundation
John: So, after your father passed away, were there some things that were helpful to you and your family in terms of healing from that and being able to move forward?
Doug: Well, I suppose what I learned about was the Mesothelioma Applied Research Foundation. And I found out that they had a lot of people who specialized in this and they were working with doctors who were focusing specifically on treating mesothelioma and they had nurses, some hospice nurses who really worked with survivors. So, one of the things I did, and I did this a couple times, is go to this annual meeting that they have, or they used to have it, in Washington DC. I tried to get my mom to go with me and she wouldn’t go, so I went with my aunt, my dad’s sister. The first time I went with her and that was very difficult because there were all these people there who had it and survived and had it for longer. Like this one woman I was telling you about who just had it for many years and is still basically living her life.
Not that you wish, of course…that you’re envious of that. I mean, I guess you are in a way, but I mean, you kind of wish that those were the same results. I was wishing that was the same for my dad because it seems so unjust. But that was a good resource for me because I talked to people who basically went through the same thing. I met some women who were my mom’s age who had been through the trauma and tragedy of this, but they were learning how to move on with their lives. That was something that I was hoping that my mom would benefit from, but her response was the opposite. She just kind of shut down and became reclusive and really cut herself off from people and cut herself off from friends and kind of went into this very self-destructive mode of drinking and things.
And that was very difficult for me, because she wasn’t realizing what that kind of response was doing to me. She was looking at it from a very one-sided perspective. And I think it also affected my grandmother because shortly after my dad passed away, like a year or two years after, she was having health problems and she ended up passing away. I don’t say this lightly, but I think that she probably died of a broken heart, because my dad was very close to her, and they were very close, and so I think that that was probably too much for her.
John: Yeah. Probably that’s one of the things that maybe we don’t talk about enough is those unseen victims of asbestos and mesothelioma. It’s not just the person who died, but their families who are left behind. And like you said, everybody’s a little bit different. Your response was a little bit different than your mom’s or your grandmother’s. And everybody handles grief in a different way, but it’s often those people who are left behind who are almost the true victims of mesothelioma.
Doug: Right. And it tore me apart. I mean, it really did. I spent some time with my dad that I probably never spent with him when I was younger and we became close and I took him to his appointments and his chemo appointments. And he told me things that he hadn’t told me about before, with the house he grew up in, and how I got my middle name, and just weird little details that in other situations you probably wouldn’t have somebody talk about to you.
John: Right. Some conversations that you might not have had otherwise. So you can look back at that time and realize that while it was difficult to lose your dad, you did have that nice time together where you were able to learn a little bit more about each other and maybe have that be a little bit of a consolation to you.
Doug: Right. And also, I found that when my dad was going through this, he didn’t feel like he could talk to anybody about it but me, because he said he couldn’t talk to my mom because my mom would get very emotional and a bit unreasonable. I remember being with them, I was there for a visit, because when my dad was going through this I was living in California so I was like back and forth quite a bit coming to see him, and one time we were going to a doctor’s appointment and they got into this little argument and I thought, “This is the first time I’ve ever seen them argue.” And you could tell that this was a special reason why, because normally I would never ever see…they were very affectionate towards one another, they were always very loving. So I mean, to see them argue or bicker at each other in that way was so unusual.
Other Mesothelioma Resources
John: Doug, you mentioned the Mesothelioma Applied Research Foundation as one of the places that you reached out to and that was helpful to you. What are some other resources that you might recommend to mesothelioma victims and their families?
Doug: Well, I suppose I stay connected with the foundation, and for me personally, what I did was try to work with other people who were going through this and telling their stories and making sure that their stories got out there to the general public who really didn’t know about this cancer. And I still think, even 13 years later, that there’s still not a wide amount of information about this cancer out there. I mean, my mom always tells me she sees commercials for it, but I mean, I don’t have a TV, but I think the knowledge is still pretty low level out there. Of course, it’s nothing like breast cancer or pancreatic cancer. I mean, those are the cancers you kind of hear about. Mesothelioma you don’t, you don’t hear a lot about that.
So that was a resource for me, because it always…not only through the conference that they have, but also through their website and the newsletters they send out, because they send out information about new treatments and doctors who are focusing primarily on solving and treating this cancer and new therapies. One of the big ones is, I mean, there are so many different kinds of ways to address this kind of cancer. One that comes to mind is like an immunotherapy which I cannot specifically remember what that was, but there are several, three or four or five different ways that you could go about treating the cancer, treating mesothelioma, ways of doing that. So that was helpful.
And of course being a writer, I really wanted to be involved and try to see if there was some other ways. I guess I stumbled upon asbestos.com. I found that and that went more deeply into, not so much mesothelioma, but just asbestos cancer. So that was my way of learning more about that. And of course I also read a few books about living in Montana, which is where basically the use of asbestos, well, the modern use of asbestos, started, and then a couple other books as well.
John: Yeah. You mentioned before we talked about a couple of those books. One was called “Defending the Indefensible”. Is that about the Libby, Montana exposure?
Doug: That’s a very interesting book and I wish I would’ve read the whole thing. I read about half of it, but it talks about the use of asbestos being used all the way back to the Egyptians. The type of wrapping that they wrapped a lot of the mummies, and the reason that they used asbestos, even the Egyptians found that, is that it had this ability to preserve things. It had the ability to be…you couldn’t burn it. Or if it did burn, it would burn at a very slow rate. So it was used to wrap, basically, the Egyptian dead in, and they were wrapping them in that.
And so, this book even goes back to that and how it was used in army blankets during World War I. It was used in some of the first buildings here in America, like some of the old Western towns and they were using it there. So it’s pretty amazing because before I read that book I only knew about the modern use of it and its discovery in Libby, Montana where it was heavily mined. But it turns out that asbestos is pretty much mined all over the world, Russia and Australia, those are the two that come to mind, and there’s probably some other places where it’s mined.
John: Right. And then the other book that you mentioned was “100 Questions and Answers About Mesothelioma”. You found that one to be helpful as well?
Doug: Right, and this is a book that used to be available, it probably still is, but there wasn’t a lot of knowledge about that book, and it was on the mesothelioma website. And at that point if you just kind of like put in a request they’d send it to you for free. I don’t think you even had to pay for it. Now it looks like if you go out to Amazon you can find it, it’s pretty widely available, I guess. But I remember giving that book to my dad. I read it as well then I gave it to my dad and he seemed pretty appreciative to have it. Because I think that his knowledge of mesothelioma, even though he was the victim of it, his knowledge was very limited and he was trying to understand it himself.
John: Right. All right. Well, that’s really great information, Doug, and I really appreciate you sharing more about your story and about your father. Thanks for taking the time to talk with me.
Doug: Okay, John, thank you. Thanks for taking the time to talk to me as well.
John: And for more information on mesothelioma visit the mesothelioma lawyers, Satterley & Kelley, at satterleylaw.com, or call the firm’s office at 800-655-2117.