Episode summary
In this episode of MESO: The Mesothelioma Podcast, host Anna Jackson speaks with Marilyn Fake, a mesothelioma victim advocate who served as the primary caregiver for her husband Billy for four and a half years after his diagnosis. Billy was a boilermaker welder who spent 36 years working in power plants and nuclear plants across the United States before becoming ill. His diagnosis began with an ER visit that looked like pneumonia — a doctor noticed something wrong on X-ray and suspected mesothelioma, which was confirmed after weeks of scans and biopsies. Billy chose aggressive treatment at MD Anderson Cancer Center in Houston, including removal of his right lung followed by radiation — a course that was harder on him, Marilyn says, than the surgery itself. Through post-treatment infections, frequent trips to Houston for monitoring, and a final hospitalization in February 2009, Marilyn was with him every step of the way, having quit her job to care for him full-time. His surgeon, Dr. Rice, once asked Billy what had kept him alive so long. Billy pointed to Marilyn. The episode explores what that kind of caregiving actually looks like — the exhaustion, the love, the small moments of meaning — including a hospital-room wedding for two of their engaged children and the Red Cross-arranged return of a son-in-law from Iraq so Billy could let go. His four-and-a-half-year survival was his own individual journey, not a prediction of what any other patient will experience.
- A mesothelioma diagnosis can begin with symptoms that look like something else entirely — Billy’s started as what appeared to be pneumonia, and it was an ER X-ray that first raised the suspicion.
- Aggressive treatment at a specialized cancer center, including major surgery and radiation, can be a path some patients choose when they want to extend their lives — but it is physically demanding, and recovery can involve serious complications.
- Full-time caregiving takes a profound toll on the whole family, not just the patient. Marilyn quit her job to be Billy’s caregiver and describes her adult children as the “glue stick” holding everyone together during those years.
- Finding small moments of meaning — a hospital-room wedding, a chaplain’s help bringing a deployed family member home — can matter deeply at the end of life, both for the patient and for those who survive them.
Full transcript
MESO: The Mesothelioma Podcast | Episode 9
Key Takeaways
What caregivers and families will learn from this episode:
Full Transcript
[INTRODUCTION]
ANNOUNCER: You’re listening to MESO: The Mesothelioma Podcast, where support, education, and outreach come together for families facing mesothelioma.
How Does a Mesothelioma Diagnosis Happen?
ANNA JACKSON: Hi, good morning, Marilyn. I have Marilyn Fake here as a guest. She is what we call a mesothelioma victim advocate. Her husband was diagnosed with mesothelioma. Unfortunately, he did not survive his diagnosis. So, Marilyn, tell me a little bit about the beginnings — a short story about when you found out until he passed away.
MARILYN FAKE: Sure. First of all, at the time of his diagnosis, I had not ever heard of mesothelioma other than occasional TV commercials for people that were, you know, going after money and whatnot.
He suddenly became ill. Well, let me back up a minute. He was a boilermaker welder. He traveled all over the United States working in power plants and nuclear plants, and he had done that for 36 years when he passed.
So he had just come home from a job out of state, and it was in February, and he was not feeling well. A few weeks after he got home, I ended up taking him to the emergency room for what sounded like pneumonia.
After about an hour or so, the emergency room doctor came in and he said, “Have you ever heard of mesothelioma?”
I said, “Well, yes.”
He said, “I have a feeling Billy has this.”
He took some x-rays and saw the lungs and the lining around the lungs did not look normal.
What Happens After a Mesothelioma Diagnosis?
MARILYN FAKE: From there we went to several hospitalizations for more x-rays, CT scans, MRIs, and biopsies. That was in Billings, Montana, where we lived outside of Billings about a half an hour.
After about three or four weeks of dealing with all the tests and getting the answers back, it came back as mesothelioma.
The thoracic surgeon that performed a biopsy had just completed a fellowship at MD Anderson Cancer Center in Houston. So he paved the way for us to go down for further treatment and evaluation, which we did.
Over the course of the next few months, they took a look at him and said, “You’ve got about six to nine months to live, maybe 12, without a surgery.”
The surgery would be removal of the right lung, which was the one affected. My husband just said, “Yes, I’ll do it. As long as I can extend my life a little bit, I’m gonna do it.”
What Is Extrapleural Pneumonectomy Surgery Like?
MARILYN FAKE: He had his right lung removed at MD Anderson Cancer Center. He was in the ICU for about a week. I was in a hotel room down there, and our total stay was three weeks.
We came back to Montana trying to get him to recover good enough to go back to Houston for radiation, which we did. We flew out on the 4th of July and we were down there until Labor Day weekend for his daily radiation treatments.
That was harder on him than the surgery. It was just devastating. He lost so much weight and was so weak and so sick.
After getting him home about a week later, I had to take him back to the emergency room. At the site where his chest tube was to drain that lung was a huge, huge infection setting in.
They admitted him to the hospital, and within just a few days, that probably three-inch site covered his chest. Just a huge bad infection. Several doctors came in and took care of him, and they called it just the worst — like a six-degree burn. It was horrible.
We got through all that just fine, and then we would go down to MD Anderson about every four months, three to four months, for more PET scans and evaluation.
How Long Can Someone Survive Mesothelioma?
MARILYN FAKE: Over the course of the next two or three years, those visits got less frequent. The last year of his life, which would have been 2008, we went twice a year.
We went in April and he was fine — clean scans. We went again in October. This time they found a tumor behind his heart.
When they removed his lung, they had to sew his heart in an upright position so it wouldn’t fall into that empty cavity, the lung cavity. So they couldn’t operate, they couldn’t radiate anymore around there.
His only option was the same chemotherapy with one more drug added to that. So there were three drugs. He had to sign a waiver saying that he knew this third medication, which I believe was Avastin, could shut his kidneys down.
He said, “You know, again, I want to live as long as I can.” He signed it. That was October 26th.
We flew back home to Montana. We had a pretty good month. We had Christmas — he slept through most of it.
Most of the time, of those four and a half years he survived, he pretty much didn’t get out of his recliner except to go to bed and fly to Houston.
What Are the Final Days of Mesothelioma Like?
MARILYN FAKE: We got through Christmas and I started seeing a decline in his mental state. I went through January just taking care of him and watching him really closely.
Then February 10th, I had to take him in to the doctors. We went to the oncologist, he brought in all these doctors and they admitted Billy. That was February 10th, 2009, and he never came home.
Shortly before all that happened, he had been begging me — he wanted a man cave, he wanted our basement turned into his man cave. So I was able to make it happen. It was a lot of work, a lot of friends, a lot of people donated their labor, their materials, and we had the most beautiful man cave ever.
The night that I realized I’m gonna have to take him into the hospital was the only night he had in that man cave.
When he got admitted to the hospital, they were just watching the kidney function and it was just going downhill rapidly. So they finally just put him on comfort care.
How Do Families Create Meaning at End of Life?
MARILYN FAKE: At the time, my oldest child and my youngest child were engaged to be married that year. They came to me one evening and asked, “Dad’s not gonna make it to our weddings. Is there any way we can have a wedding here in the hospital room?”
The chaplain at the hospital was a very good friend of mine and our families, very close to our family. So he arranged that, and it would have been two days after we asked. We had the cutest little wedding ever.
I ordered two wedding bouquets, and the chaplain ordered a comfort care cart, but he said, “This time it’s gonna be different. I want a wedding cake and some bubbly champagne.”
So that was delivered to the room. We had the ceremony. Bill was pretty much comatose, but the kids kept holding his hands and he would squeeze their hands. So we know he was very well aware of what was going on.
That was a great story that made the local news and newspaper. That would have been February 26th — the wedding day.
When Do Mesothelioma Patients Let Go?
MARILYN FAKE: He just started going downhill, and we knew the end was near. We weren’t sure why he was hanging on so long, but we knew he was seeing the life ahead of him in heaven. We knew he was seeing his relatives that have passed. I’d ask him and he’d nod his head.
The chaplain suggested that there’s someone not here that needs to be here. I had a son-in-law in Iraq, and him and Bill were very close. His name was Ryan.
So the chaplain arranged with the Red Cross to get Ryan there, and 24 hours is all it took before Ryan walked into the room.
He walked into the room at 6:30 that night. Bill passed away at 8.
That was probably… it was touching. Sorry.
What Is It Like Being a Mesothelioma Caregiver?
MARILYN FAKE: Our family — it not only affected me as his wife and going on all those trips and being his caregiver. I was his caregiver for four and a half years. I quit my job to do this because he didn’t want to have Medicare pay for an in-home caregiver. It was me.
I remember his surgeon in Houston, Dr. Rice, towards the end, he said, “Billy, I don’t know what you’ve done to stay with us so long, as long as you have.”
And Bill just pointed to me.
So I have no regrets. My children, who are all adults now — all grown children, they were then too — but they were definitely my glue stick, keeping us all together.
I know there’s thousands of families going through this now, thousands that have been through it like me. That was 17 years ago, and it’s still very fresh in my mind. It’s very raw.
But I want to do whatever I can to help others just try to make their loved ones last longer, comfort them. I’ve been there, I’ve done that, and I think I can speak on behalf of my family that we did a darn good job.
The Emotional Toll of Caregiving
ANNA JACKSON: Yeah. It’s tough being a caregiver. I think it’s also — I know that there’s a lot of people that probably came to you and said, “Hey, let me give you a break.”
And I think the hardest thing is taking that time out for yourself because you’re afraid — what if this is the last moment and I want to be there? And so that’s really hard. Even though it may have been a break for you, it’s not really a break.
MARILYN FAKE: You definitely are right. You definitely are.
ANNA JACKSON: It doesn’t compare to the individual that’s going through the situation. We can’t fathom the pain or the suffering that they’re going through. But caregivers go through quite a bit as well. It takes a major toll in your life — not just you that’s there, but the children, because they’re concerned with you and your husband.
I commend you for being so strong for so long. It’s not an easy thing, and I know that.
I know that this is something you’re gonna — you mentioned the weddings, and then Ryan coming in and saying his goodbye and your husband finally letting go and allowing himself to begin a new life.
As difficult as things were, I’m sure everyone was grateful that you were there, and I know that you were grateful that you had the opportunity to be there with him. Really important, but hard.
I really thank you for sharing that. I know that it’s an emotional thing for you, but there’s so many people that are going through what you’re going through, and just to hear that they’re not the only ones that are feeling the way they do or going through the things that they went through.
[CLOSING]
ANNOUNCER: Thank you for listening to MESO: The Mesothelioma Podcast. For more information, resources, and support, visit our sponsors Danziger & De Llano at dandell.com.
Frequently Asked Questions
What is mesothelioma?
Mesothelioma is a cancer caused by asbestos exposure that affects the lining of the lungs (pleural mesothelioma), abdomen (peritoneal mesothelioma), or heart (pericardial mesothelioma). The disease typically has a 20-50 year latency period between exposure and diagnosis, which is why many patients are diagnosed decades after their occupational asbestos exposure.
How long do mesothelioma patients typically survive?
Without treatment, median survival for mesothelioma is 12-21 months. With aggressive treatment including surgery, radiation, and chemotherapy, some patients survive significantly longer. In this episode, Billy survived 4.5 years after being given an initial prognosis of 6-12 months — demonstrating that individual outcomes can vary substantially from statistical averages.
What is extrapleural pneumonectomy (EPP)?
Extrapleural pneumonectomy is a major surgery that removes the entire affected lung, the lining of the heart (pericardium), the diaphragm, and the lining of the chest (pleura). This aggressive surgical approach is typically followed by radiation therapy and is performed at specialized cancer centers like MD Anderson Cancer Center in Houston.
Where were boilermaker welders exposed to asbestos?
Boilermaker welders like Billy frequently encountered asbestos in power plants, nuclear plants, refineries, and industrial facilities across the United States. Asbestos was used extensively in insulation, gaskets, and protective materials in these settings through the 1980s.
What support is available for mesothelioma caregivers?
Caregiving for a mesothelioma patient is physically, emotionally, and financially demanding. Resources include specialized cancer center social workers, hospice and palliative care teams, mesothelioma support organizations, and legal compensation that can help cover caregiving costs. For information about caregiver support and compensation options, visit https://dandell.com/mesothelioma/ or call Danziger & De Llano for a free consultation.
How do families cope with end-of-life decisions?
Every family’s journey is different. Marilyn’s family found meaning by bringing the children’s weddings to Billy’s hospital room and ensuring a deployed family member could return to say goodbye. Chaplains, social workers, and palliative care teams can help families create meaningful moments during this difficult time.
What compensation is available for mesothelioma families?
Over $30 billion is available in asbestos trust funds for mesothelioma victims and their families. Families may be eligible for trust fund claims, personal injury lawsuits, VA benefits (for veterans), and wrongful death claims. The average mesothelioma settlement ranges from $1 million to $2.4 million. Learn more at https://dandell.com/mesothelioma-compensation/.
Resources Mentioned
About This Episode
Guest: Marilyn Fake, Mesothelioma Victim Advocate whose husband Billy survived 4.5 years after diagnosis
Host: Anna Jackson, Director of Patient Support at Danziger & De Llano with 15+ years of experience helping mesothelioma families — who lost her own husband to cancer in 2007
Episode Topic: The caregiver’s perspective on mesothelioma — from diagnosis through treatment to end-of-life care
Sponsor
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.
Danziger & De Llano is a nationwide mesothelioma law firm with over 30 years of experience representing asbestos victims across all 50 states. This podcast provides information only and does not constitute legal advice. For a free case evaluation, visit dandell.com.
Frequently asked questions
How did Billy’s mesothelioma diagnosis actually begin?
As Marilyn describes it, Billy had just returned home from an out-of-state job and wasn’t feeling well. She took him to the emergency room for what seemed like pneumonia. After about an hour, the ER doctor reviewed his X-rays, noticed the lungs and the lining around the lungs didn’t look normal, and asked Marilyn whether she had ever heard of mesothelioma. From there, several weeks of scans and biopsies at a hospital in Billings, Montana confirmed the diagnosis. The episode is a reminder that mesothelioma can initially present in ways that resemble more common conditions.
What kind of treatment did Billy receive, and where?
Billy was treated at MD Anderson Cancer Center in Houston. His thoracic surgeon in Montana — who had completed a fellowship at MD Anderson — helped connect the family with specialists there. Treatment included extrapleural pneumonectomy, the surgical removal of his right lung, followed by a lengthy course of daily radiation therapy. Marilyn describes the radiation as harder on Billy than the surgery itself, and she recounts a serious chest infection that developed after he returned home. Every family’s treatment path is different, and decisions about care are best made in consultation with a specialized medical team.
Billy survived four and a half years after diagnosis — does that mean other patients can expect the same?
Not necessarily. Billy’s four-and-a-half-year survival was his own individual experience. When the episode mentions that doctors initially gave him a prognosis of six to nine months — maybe twelve — without surgery, and that his own surgeon at MD Anderson later told him he didn’t know what Billy had done to stay alive so long, it underscores how much variation exists from person to person. Survival timelines depend on many factors, including the type and stage of mesothelioma, the treatment chosen, and the individual patient. Billy’s story is one family’s experience, not a prediction of outcomes for anyone else.
What is the emotional reality of being a mesothelioma caregiver?
Marilyn quit her job to be Billy’s full-time caregiver for four and a half years. She describes the experience as one that affected not just her but all of her adult children, who she calls her “glue stick.” Anna Jackson, the host, reflects that even when others offered Marilyn a break, it was never truly a break — the fear of missing a final moment meant she was always emotionally on duty. Marilyn also notes that seventeen years later, the experience is still raw. Caregiver support — including peer communities, social workers at cancer centers, and hospice and palliative care teams — exists for exactly this reason, and reaching out for help is not a sign of weakness.
Where can caregivers and families find support when going through mesothelioma?
Marilyn describes becoming a mesothelioma victim advocate specifically because she wants to help other families who are where she once was. She notes there are thousands of families going through this. Resources for caregivers can include social workers and patient navigators at specialized cancer centers like MD Anderson, hospice and palliative care teams who can help families create meaningful end-of-life moments, chaplains (as Marilyn’s experience illustrates), and community support organizations focused on mesothelioma families. The episode’s sponsor, Danziger & De Llano, also offers information for families at dandell.com.
Get patient & caregiver support
Hosts: David Foster & Anna Jackson (Patient Advocates).
MESO: The Mesothelioma Podcast is produced by MesoCare.org and sponsored by Danziger & De Llano. This episode is educational and is not medical or legal advice.