Hope After Mesothelioma

A single, quiet moment can change everything: a nurse listens to her husband’s lungs and hears nothing on one side. From there, life moves fast. We’re joined by Linda Chitwood, an RN, longtime nurse educator, and author of Fear To Faith, to share how her family faced a mesothelioma diagnosis that didn’t “make sense” on paper and what they did next.

We talk about asbestos exposure that isn’t obvious, the shock of learning how many older products contained asbestos, and the whirlwind from imaging to biopsy to pathology, including a rare clear cell mesothelioma finding. Linda walks us through why their team considered extrapleural pneumonectomy (EPP) at Duke, what the surgery removes, and what it really takes to recover and adapt to life with one lung. We also get practical about quality of life, including the toughest part for them: pain control, medication fears, and the relief of finally working with pain specialists.

Just as important, we slow down for the human side. We share what caregiver support actually looks like, why accepting help is a gift to both sides, and where families often feel overlooked, especially grown children. Linda also opens up about her current fight with multiple myeloma and how her kids and grandkids now show up for her through chemotherapy.

If you know someone navigating mesothelioma, caregiver stress, or asbestos related cancer, subscribe, share this conversation, and leave a review so more families can find support and hope.

MESO: The Mesothelioma Podcast is sponsored by Danziger & De Llano, a nationwide mesothelioma law firm with over 30 years of experience and nearly $2 billion recovered for asbestos victims. For a free consultation, visit Dandell.com.

Transcript

Welcome To Miso

SPEAKER_00 0:02

You're listening to Miso, the Misothelioma podcast, where support, education, and outreach come together for families facing misothelioma.

SPEAKER_04 0:16

Hi, good afternoon. Uh this is Anna Jackson. Um welcome back to Miso, the Miso podcast. Today's guest is uh Linda Chitwood, and I invited Linda into this podcast um because I wanted her to talk a little bit about her book. But if Linda, would you introduce yourself and what you what you do? Um sure.

SPEAKER_03 0:42

Um currently I am semi-retired. Um I am an RN and I have spent most of my career teaching nursing. And most nurse educators like me have aged out, but they call me back to do a little bit of work for them. Some that, and I'm a grandmother and a mom, and that is probably the most important things I am.

SPEAKER_04 1:03

I just had I um I have a one-year-old granddaughter. She's my only one. So listen, I love, love, love being a grandma. She is so amazing. Yeah,

Why She Wrote Fear To Faith

SPEAKER_04 1:15

it absolutely is. It absolutely is. Um, so uh I wanted to start out, yeah, you you know, why you wrote the book Fear Uh to Faith?

SPEAKER_03 1:28

Um, I felt compelled to write it because when Laney was first diagnosed, I didn't find much hope anywhere. And I wanted people to feel some hope. I wanted to tell my story to know let let people know we got through it. Um he lived for almost 10 years. They were mostly good quality years. Yeah and that um yes, um death may happen, it may not happen, but you can still be hopeful.

SPEAKER_04 1:57

Yeah.

SPEAKER_03 1:58

Find the joy and in the joy and um what your introduction just said with Nizo, you know, giving hope, get trying to find support, all the all of the above.

SPEAKER_04 2:10

Right, right, right. So tell me uh Lenny, uh, your husband, tell me what he did for a living.

SPEAKER_03 2:17

He was a game warden. That was one of the strangest coordinate things with us. He didn't we live where there's shipbuilding. We live in Tidewater, Virginia, and there's Newport New Shipbuilding, there's Norfolk Shipbuilding. Asbestos is very common, but he worked outdoors all his life. Um, never smoked, neither of us did. And it just seemed the weirdest thing that he would come down with mesothelioma. He did work some construction jobs here and there in college. And of course, everyone our age, I'll be 74 in July, we were all exposed to asbestos. It was everywhere. It was in schools, it was everywhere. So we were all exposed. Uh and it's an incidental exposure type thing.

SPEAKER_04 2:58

Yeah, I I don't think that people realized how many products were made with asbestos. So if you were, you know, probably our age, um, you know, 1960s, 1970s, 70s to 1980s was there was quite a number of products that were made from asbestos, and you'd be surprised uh where or what products were made from asbestos. I mean, I was surprised to hear some of them, and I work in that industry where we talk to people about what they do for a living because they've been diagnosed. I was very surprised to hear some of the products that had that. So I wanted to um, if we can um go into uh the last sentence of your your prologue states that everything was going well until November 15, 2017. What happened that day?

SPEAKER_03 3:55

Well, it would have been probably 2007.

SPEAKER_04 4:00

Um did I put the wrong date on there? I okay, 2007. I put 17, but I think it is okay. But you know better than I do. So that's okay.

SPEAKER_03 4:09

Um that was the day that I came home from work and he had been fighting an upper respiratory infection, a cold, which was very unusual for him. He never was sick. And he asked me, um, I I am a nurse, and I he said, Will you check my lungs out? He said, I just feel like I'm coughing and you know, I just want you to check my lungs out, which is something I did for a lot of people. And when I listened to his lungs, I heard nothing on the right side. Absolutely nothing. And I I looked at him and he was pink and he was all the good colors you'd want someone who's healthy to be. But I knew there was something terribly wrong. And I said, I think you need to go see our doctor the next morning. And I had a terrible feeling in the pit of my stomach. My nurse, you know, when you're a nurse, you've been a nurse for a long time, you sort of know when someone's really got something going on. And I definitely had that feeling.

SPEAKER_04 4:56

I guess it's um knowing

The First Signs And Diagnosis

SPEAKER_04 5:00

what you know and and what you did for a living, it made, you know, it just kind of scared you a little more than it did.

SPEAKER_03 5:06

I didn't have the lux I did not have the luxury of denial of thinking I was probably nothing. I knew it was something.

SPEAKER_04 5:13

So how long from the time um that you, you know, on November 15th, till you actually uh received a diagnosis?

SPEAKER_03 5:24

It was about 10 days. Um he was hospitalized. That was on a Thursday, and on a Friday morning, I sent it. I we had to go two diverging paths. I had to go to work, I had something I had to get done. And uh he went to the I see our doctor, and she hospitalized him right away, and they x-rayed him, and his lung was filled with fluid. And um, they hospitalized him then, and they told us that day they were asking all sorts of questions. They found three tumors, and they were asking about asbestos and all that. So I knew they were thinking mesothelioma. And actually, it was about the following Thursday, Wednesday. I knew all the doctors, I knew the pulmonologists, and one of them sought me out while I was with my students and said, initially they thought it was renal adrenal cancer because that's clear celled, and his was clear celled, but he had clear cell mesothelioma, which is a only a small portion of people have that. And um, but he took me aside, he said it's looking less and less like renal adrenal, it's looking more like mesothelioma. So he had kept me updated with that.

SPEAKER_05 6:29

Right.

SPEAKER_03 6:29

And we got we got the initial diagnosis about about a week later, and then it was uh once Duke got involved, they wanted to see the slides, they wanted to do their own slides, and then it was really, I mean, we were we were thinking then it probably was.

SPEAKER_04 6:43

Right, right. So Duke he had his biopsy at Duke.

SPEAKER_03 6:47

He had his first one at Obesy in Suffolk, which is about a half an hour from here, and they did a marvelous job. Duke complimented everything they did, and but we wanted to uh when we knew he probably was gonna have the extrapleural pneumonectomy. Now, the extrapleural pneumonectomy is when they remove the the lung that's not the the most severe, the lung that was involved, the lining around the lung, the lining around the heart, half his diaphragm and one rib. It's a huge, huge operation. They clear everything out. And um, we had pre-I had done a lot of research and I pretty much realized that was about the best thing they could offer at this point in time. I guess they do other things now, but at that point in time that bought him the most time and gave us the most hope.

SPEAKER_04 7:30

Yeah, I think at this point right now they have a a few more options, uh immunotherapies, and I I really think that they don't tend to go the route of the um the extra the oral pneumonectomy.

SPEAKER_03 7:46

Yes.

SPEAKER_04 7:50

Right. Um, you know, a lot of it are what I hear is, you know, maintaining uh the cancer and just prolonging life. But um, yeah, I mean, you know, I think that a lot of the ones that have um survived the longest are those that have had a chance to do the EPP.

SPEAKER_03 8:09

We we I keep hearing that even in this day and time. I'm surprised, but I do hear that quite frequently. And I have had lawyers who work with mesothelioma tell me that if they ever came down with it, they would ask for it.

SPEAKER_04 8:20

Yeah, yeah. It but it's tough. It's tough. Cross-decision. Yeah, it is, it really is. Um, so okay, I already asked the question. So Dr. Seuss tells you that the only hope is uh for survival is EPP. Um you know, tell me about that operation. It's a long operation. Am I it's a long, it it is a long yeah, you did kind of break down what that was.

SPEAKER_03 8:46

Um it is a long operation. Um, it's very involved. And as one of the doctors there told me, he said it's one of the hardest, most difficult operations to recover from because usually they're replacing things when they have a they do a double lung thing, they replace the lungs with healthier lungs so the person feels better and recovers better. But here they're actually taking something you need, and you have to learn dysfunction with just one lung. Uh Landy did great. He um he was only in the hospital six days.

SPEAKER_05 9:17

Oh wow.

SPEAKER_03 9:18

Yeah, they told us to be they told us to be prepared for 10 to 14 days, and I was. But by day six, he was up and around, and honestly, I can say it didn't slow him down a whole lot. He was so otherwise healthy uh that it didn't really suck him. We had a real problem with pain management. He didn't react well to narcotics, so there was only a few narcotics he could be put on. But we finally got his pain under control with methadone, which people don't realize that is a pain reliever. It's what you know, methadone they think, of drug abuse. Everybody thinks that, but it's also a pain reliever, and that really helped to control his pain well.

SPEAKER_04 9:56

Yeah. You know, one of the things that I did want uh people to hear about, um, you had a very, very good, based on what I read, uh, support group. I did. And so I kind of want you to talk a little bit about, you know, the importance of of a support group. Even with with strangers, you mentioned when you were waiting for him um in the uh waiting room while he was having surgery, there were strangers that were willing to support you in any way. Yes. Can you can you kind of break that?

SPEAKER_03 10:27

Sure. Sure. Well, we're we're very friendly people anyway, and somehow or another, with cancer families, everybody feels a bond. And even in the waiting room, people would say, Well, who's sick, you or him, because he looks so well

Choosing EPP Surgery At Duke

SPEAKER_03 10:40

for so long. And I would say, Well, he's the one. But um, people were very friendly. I have a this is a very country community, and it's very everybody looks out for each other. It's very rural. And uh anytime I needed anything, all I had to do was pick up the phone. And our church really supported us. They brought us food three times a week, right? Really nice Southern people cook. And so they brought us a huge meal three days a week for a month. And that really helped us a lot too, because we were going back and forth to duke so much, I never knew when I was going to get home. And it was usually stuff they I could microwave and come home. And it was just nice to have that, and I really appreciated that. My work family was very supportive, they were very flexible with letting me just, I mean, there's times I just had to say I can't be here tomorrow, and they were very good about that.

SPEAKER_04 11:31

Yeah. And, you know, I I I like to bring that up because, you know, sometimes people don't want to, you know, bother other people uh in need, but I think it's not only important for the individual, uh, the caretaker or the individual that has been diagnosed, but even for the people that are giving you the support. I mean, I think I look at it as a blessing for both people. And um, I, you know, the funny thing was I had um read a book um, I think uh about a year before my husband passed away from cancer. And one of the things that uh was brought up was, you know, don't take the blessing away from someone else. You know, it that's their blessing to be able to help you in any way that they can. And absolutely, you know, um that it helped me to accept when someone asks, do you need something? Or even just sit down and have a cup of coffee and not really say much of anything, just having someone there sometimes or um, you know, is is such a big deal. And I I think it's important that people know that um as a care, you know, it's it's difficult as a caregiver because we don't want to leave the person because we're afraid that that would be a moment that something horrible happens. Right. But you know, sometimes you need to take that time away just to refresh yourself and be a better you. And um I I I you know, I always want people to know that don't, you know, you really need to take that break uh as a caregiver. Um, and I know that you you had the support. Um, I I was reading a part where the it was a nurse that you knew because you were a nurse um that was with him and you felt um comfortable with leaving and going home and taking a shower because um you had that relationship with the people there at the hospital. Not everyone has that, but you know, there are a lot of people that we need to uh, you know, call when we need, you know, some help to get through it because there's so much weight being placed on a caregiver when we're dealing with that. Um so tell me, you said that he had a really short recovery because most individuals have difficulty even trying to breathe, you know.

SPEAKER_03 13:58

I I spoke that was a fear that he had. Um and uh it was funny when they when Dr. Harpal first came out and talked to us. I didn't ask him if he was on a ventilator. I didn't even think to ask him that. And I wished I had, but I wasn't about to call him back in there to ask him again. But when they brought him through the hallway, I could see they were not bagging him. And I knew if they had were bagging him, that meant he was on a ventilator. And the first thing he said to the first thing he said to us was, I can breathe. I can breathe because I think that really frightened him that he would not be able to breathe on his own. Yeah, he was able to breathe. And he was so otherwise healthy that I think that that really helped us.

SPEAKER_04 14:43

Yeah, I think that that is um, you know, such a big um you know thing because when you go through the EPP uh surgery, um if you're not you're if you're not in good health, it does create other issues when you're especially after the the surgery, you know, trying to breathe. And uh I spoke to someone uh initially they didn't think she was going to survive after she had you know the surgery. Uh, but slowly but surely she was coming out of it. But she was in the hospital for quite some time in recovery. So he had a very short recovery.

SPEAKER_03 15:20

That that's he did. He was, but he didn't have any diabetes, no hypertension, he didn't have any other underlying health issues. That was really just it. So I think that that helped him a lot. Um, we had lots of support, lots of people coming to pray, and lots of people coming to visit. And I think sometimes it tired him out, but people were very understanding when I said, you know, he's really tired now. They they took their leave, they were not offended. And some people drove like three hours to get there and they would only see him for like 10 or 15 minutes. And I thought, but they understood, and it was, you know, it's just how it was. But they like to get you out of the hospital because they don't want you catching anything in the hospital while there.

SPEAKER_04 16:00

Yeah, I know I never thought about that, but that's true.

SPEAKER_03 16:03

Yeah. It was safer at home. But I will tell you that even as a nurse caregiver, I was very frightened. Um, if I had to do it over again, I would spend the first night in at Durham in a hotel room. I would. Because I was so fearful being three hours from Duke. And I was like, gosh, and if something happens, I mean, we have Obesy, which is a wonderful hospital, and two wonderful pulmonologists there, but I felt the real burden of that. And I think I would have spent at least the first night, maybe two nights, there in case anything happened. But nothing did. Everything went smoothly, and I'm thankful for that.

SPEAKER_04 16:38

I mean, it just sounds like everything

Support Networks And Pain Control

SPEAKER_04 16:40

for you all was very smooth.

SPEAKER_03 16:43

And that's it was the only problem, was really the pain control issue because keeping his pain under control was really hard, and I could tell he was really hurting at times. And we eventually did see the pain specialists at Duke, and they're the ones who came up with methadone as a thing, and that really helped him.

SPEAKER_04 17:02

Yeah, that's awesome. Is there something um that you would do differently going if you could do something different? Because everything seemed to run smooth. I don't, you know, I don't know if there is.

SPEAKER_03 17:14

Well, I wouldn't have done anything differently. Um, we were very blessed. The only thing I will say is that I think it was hard on my children.

SPEAKER_05 17:23

Yeah.

SPEAKER_02 17:24

I learned through this that there's not very much support for grown children. Yeah. You know, there's support for spouses somewhat. But I think they suffered um, you know, just they had I mean, there's nothing I could have probably done, but we were always we tried to make it, but I can see that that was a hard time for them.

SPEAKER_04 17:46

Yeah. Yeah, you know, I don't you don't think about I mean you think about the caregiver, you think about the patient, but then there's the family members that are struggling because they really don't completely understand everything that's going on. But they seem right.

SPEAKER_03 18:02

They they didn't always understand. They were quite worried about him becoming hooked on medication.

SPEAKER_05 18:08

Okay, pain.

SPEAKER_03 18:09

And we we and we we we were very open and honest. We were we have very good communication, very strong communication. And I just said, I don't care if he gets hooked on it. I mean, it's about quality of life at this point, and he's got to do um what works for him best because there's side effects to all of it. And there were times that he did seem sleepy, and I was like, Look, you can't drive, you know, you gotta wait till you, you know, till you've till it and he he sort of learned his limitations with that too. If he had just taken his medication, he wouldn't go anywhere. He had to time it so that he could drive and drive safely. But they you know, they had they had concerns about all that, and those are legitimate concerns, yeah, yeah.

SPEAKER_04 18:47

So you guys are big um sports. You you guys were really big, you and your family were really big in uh college uh sports.

SPEAKER_03 18:55

And yep, we like we like college football. Yeah, and we were able to do a lot of that for a while, yeah.

SPEAKER_04 19:02

Right. So I wanted to um read something from your book. Um, and it's the the first verse that you put in there, which is Mark 5.34, and it says, Jesus said to her, My daughter, your faith has made you well. Go in peace and be healed of your troubles. And when I talked to you uh earlier um and had asked if you wouldn't mind uh talking about the book that you put together and why you put the book together, and we know that the reason was to help other people go through some of the things that you went through. And as I mentioned earlier, that you know, I had happened to read a book about, you know, uh, you know, someone had been in an accident. And so that helped me through when my husband was going through his uh cancer. Um and um so yeah, it's very helpful to know or to be able to look at and even compare, you know, oh, she went through this, and and um you were you were very well versed in the medical field, so it was helpful. And and but you know, it also helps people to um think about, oh, what should I ask or what should I look for? And and so it's helpful to have that. But when we talked earlier, you mentioned that you're going through something right now. See what's going on.

SPEAKER_03 20:29

Yes, I was diagnosed with multiple myeloma about a year ago. And initially um it was just smoldering and watch and wait, but it took off about I would say about January, February this year, it just started growing. So I'm currently undergoing chemotherapy and all that stuff too.

SPEAKER_04 20:48

And so it's been it's been a difficult thing for you, and it has one of the things you've learned is to, you know, uh stay in tune with your children so that they don't um so it's you know, we learned something from everything, right?

SPEAKER_03 21:04

And that had that that was my initial um heartache was that they were gonna have to see another parent go through this. But they're tough, they're tough, they're wonderful, and they rose right to the occasion and said, Mom, we're here, we'll take care of you. And they had anything I've needed, they've been right here. And my grandchildren are older now, so they're able to truly help me. The first three times that I went through chemo, my daughter made sure that one of them was with me each time. Yeah, it's tough. Very sweet. And it was well, it was very good for them, it was very good for me. And um, so you know, they're older now,

Faith, Family, And Her New Diagnosis

SPEAKER_03 21:40

like I say, they can help, truly help. And so that's made a big difference too.

SPEAKER_04 21:45

Right. So I I read that verse because I, when you told me that, and then I opened this book and it says, Jesus said to her, My daughter, your faith has made you well. Go in peace and be healed of your troubles. And I was thinking of you when I read Read that and I said, you know, see, you know, sometimes he gives us uh these words before. Yes. And we don't know why he's giving us that word sometimes. And here we are. Yep. Well, I am so grateful um that um that we were able to talk about it. I we do have several copies. So if anyone is looking for a copy of this book, we have some.

SPEAKER_03 22:25

We don't have a whole lot, but they but can do you know where uh someone could purchase this book if they I think you can get them off Amazon and certainly um if they call you, if they look, if they can give us I'll send it to them and all that. Yes.

SPEAKER_04 22:41

Awesome, awesome. So if you're interested in reading her book, I I enjoyed, I thoroughly enjoyed reading her book. Um, you know, by all means just give us a call, um, and we'd be more than happy to give you a copy of it. Um maybe I can even get her to sign one for you. I don't know. Sure, sure. But thank you so much for writing this, um, for giving uh hope to other people that have gone through or that are going through it, actually. Um, because you know, there's been a number of people that we've talked to that has survived it. Um so there is that possibility, and as much as you get that doom and gloom when you go online, it can happen.

SPEAKER_03 23:23

Um it can happen. And miso.org is a wonderful organization that will give you got really good information as well.

SPEAKER_04 23:33

Right. Yeah, there are some support uh groups out there, um, and we'd be more than happy to send you there if you want to give us a call. Linda, thank you so much. You've been amazing. I appreciate you. And if there's anything that I can do, even if it's just a conversation or something at the moment, I'd be more than happy to be there for you as well. Thank you. Thank you so much. You're welcome.

SPEAKER_00 24:01

Thank you for listening to Miso, the Miso Thelioma podcast. For more information, resources, and support, visit our sponsors, Danziger and Diano at dandel.com.