MESO: The Mesothelioma Podcast

From Grief To Advocacy

• MesotheliomaPodcast.com • Season 1 • Episode 10

Share episode


Episode Title

From Grief to Advocacy: How One Caregiver's Photo Album Changed a Senator's Mind


Episode Description

A mesothelioma caregiver's photo album—with no written words—moved a U.S. Senator to tears and earned her a spot at a national press conference. Marilyn Fake's journey from Capitol Hill advocate to hospital emergency department technician reveals how caregiving transforms lives long after a loved one passes.

In this episode of MESO: The Mesothelioma Podcast, host Anna Jackson—Director of Patient Support at Danziger & De Llano with over 15 years of experience helping mesothelioma families—sits down with Marilyn Fake, who cared for her husband Billy through a nine-hour extrapleural pneumonectomy and radiation treatment at MD Anderson Cancer Center before becoming a hospital caregiver and "No One Dies Alone" volunteer.

Together, they cover:

  • How visual storytelling—photos of Billy before and after surgery—proved more powerful than written testimony when lobbying for an asbestos ban in Washington, D.C.
  • The talc-mesothelioma connection Marilyn raised at a 2009 MARF banquet—a link scientists later confirmed between baby powder and peritoneal mesothelioma in women
  • Practical nutrition strategies for patients with radiation-damaged esophagus, including why raspberry parfait gelatin became essential for swallowing pills
  • The "No One Dies Alone" hospital program where trained volunteers sit with dying patients who have no family—carrying a duffel bag with instrumental music and gentle light
  • Why it took 16 years to scatter Billy's ashes at his favorite Montana mountain—and how 25 friends from his four-wheel drive club made the memorial unforgettable

Whether you're caring for a loved one with mesothelioma, navigating treatment side effects, or seeking connection with others who understand this journey, this conversation offers rare practical wisdom and emotional support.

Resources:

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.

From Grief to Advocacy: A Caregiver's Journey from Capitol Hill to the Hospital Floor

MESO: The Mesothelioma Podcast | Episode Transcript

Host: Anna Jackson, Director of Patient Support at Danziger & De Llano Guest: Marilyn Fake, Caregiver Advocate and Mesothelioma Widow

Key Takeaways

Mesothelioma caregivers often become powerful advocates after losing their loved ones, with some traveling to Washington, D.C. to lobby for asbestos bans and others channeling their experience into healthcare careers. In this episode, Marilyn Fake shares her transformation from mortgage industry professional to Capitol Hill advocate to hospital emergency department technician—a journey sparked by caring for her husband Billy through a nine-hour extrapleural pneumonectomy and subsequent radiation treatment at MD Anderson Cancer Center in Houston, Texas.

What listeners will learn:

  • How a photo album without a single written word moved a U.S. Senator to tears and earned a caregiver a spot at a national press conference
  • The connection between talc in baby powder and peritoneal mesothelioma in women—a link scientists confirmed years after Marilyn first raised the question in 2009
  • Practical nutrition strategies for patients whose radiation-damaged esophagus makes eating painful, including the unexpected role of raspberry parfait gelatin
  • Why the "No One Dies Alone" hospital program provides comfort to dying patients without family—and how caregiving experience prepares volunteers for this work
  • The healing power of honoring final wishes, even when it takes 16 years to scatter ashes at a loved one's favorite mountain location

Full Transcript

ANNA JACKSON: You're listening to MESO: The Mesothelioma Podcast, where support, education, and outreach come together for families facing mesothelioma.

So, Marilyn, I know that after your husband passed away, there was something you did that you had mentioned to me the other day that I thought was just really amazing. Can you tell me what that is?

MARILYN FAKE: I sure will. I had the most amazing opportunity to go to Washington, D.C. on behalf of mesothelioma victims and their families. The purpose was to try and ban asbestos in the United States because it's everywhere.

So I spent three days out there, and I was accompanied by a very special person in my life. It was an eye-opener. We did a lot of meetings at this hotel, but one particular day—I think it was our second day—we were going to march up the hill to the Capitol.

They had asked everyone to provide a letter about their story. I did not have a letter. I had this little photo album full of pictures of Bill before surgery, after surgery, long after surgery. So I just tucked that in my purse and away I went.

There was no one else from Montana representing us, so I kind of hung out with Pennsylvania. When they got to their senator's office, they all went inside, and I sat out in the hallway.

After several minutes, this tall gentleman came out and introduced himself as a senator from Pennsylvania. He said, "You're from Montana." I said, "Yes."

How Did a Photo Album Change a Senator's Mind?

MARILYN FAKE: He says, "I understand there's no representatives here for you today. I would like you to come into our room and tell your story."

I said, "Gladly." And I handed him this album and said, "I don't have a letter, but this is my story. Please look at it." I said, "We have three grown children and no grandchildren. I'm afraid my husband missed out on the grandkids."

Presently we have five grandkids. The senator looked and looked and looked, and he broke down in tears. He was about six foot four.

After that, we continued our little march around there. That evening, there was a press conference. When I got back to the hotel, I could hear my name being called over the loudspeaker to report to the concierge immediately. I thought, "Oh my gosh, what did I do?"

When I got down there, the lady said, "Well, apparently you shook up the hill today."

The Pennsylvania senator had contacted them and said, "We want her as part of our press conference that evening."

I had never done a press conference. I did not know what I was in for. I got in the room and they kind of prepped you, and there were all the big fuzzy microphones and reporters and media. It was so overwhelming.

The lady that was helping me just said, "Just tell your story."

At times there were some comical parts to our story when we were going through radiation in Houston. I kind of had the crowd laughing and crying at the same time. It was really, really wonderful.

What Happens at a MARF Banquet?

MARILYN FAKE: They had a big banquet, and the organization that put this on was MARF—M-A-R-F—the Mesothelioma Applied Research Foundation.

At the dinner, they had tables set up for 10. At each table, there was a scientist, and we were allowed to ask them any questions we wanted.

Now, remind you, this was in 2009. I had a question. The speakers up to that point that night had been a lot of peritoneal mesothelioma patients and victims. My husband had pleural mesothelioma, which was of the lung. Peritoneal is in the abdomen.

Is There a Connection Between Talc and Mesothelioma in Women?

MARILYN FAKE: As a mother of three babies that grew up, I asked the scientist: "I now am aware, and as is the world, talc is in baby powder. Asbestos was in talc. Is there a chance that by mamas using baby powder on their little girls—because most of these people talking were females—could that have been a cause for their mesothelioma?"

He said, "We're on to that right now. We are working on that."

Lo and behold, several years later, they proved that positive. That was really, really rewarding.

Can Asbestos Ever Be Fully Banned?

MARILYN FAKE: I learned a lot. The one thing they'll never be able to do is ban asbestos more than 99%. There's one percent of that mineral that's in the veins of our earth that is plowed up and used in highway construction—everything.

So it wasn't that successful, but it was sure a learning experience. I met so many people. I stayed in touch with a lot of those people until they were no longer on earth.

After that, I also continued with my friend that accompanied me to Washington and his firm to advocate. I worked with Bill's surgeon one time. I went down for some lectures. We handed out brochures, we had business cards. I was available by phone just to help people out there.

I did that for probably three years, and finally we just kind of put that to rest. And now I have it all fresh in my mind and memory, and I am so happy and able to help anybody that I can with any questions—your nutrition, just being a caregiver and how to care for that patient.

You know, they're pretty much disabled at that point. Mine was when he had his lung removed. He could walk, but that was about it. It was usually a wheelchair.

What Does a Nine-Hour Mesothelioma Surgery Involve?

ANNA JACKSON: The surgery he had was a pretty extensive, difficult surgery.

MARILYN FAKE: Yeah, it was nine hours. They not only removed the lung, they sewed his heart in the upright position, they replaced his diaphragm with a Gore-Tex diaphragm, and then they covered the heart in Kevlar.

So we always laughed—he had a bulletproof heart. He had a sense of humor.

ANNA JACKSON: You have to, though. I mean, you really have to.

What Nutrition Challenges Do Mesothelioma Patients Face During Radiation?

ANNA JACKSON: One of the other things that you've done is you actually put together a little recipe book. Were these recipes that you used with your husband Billy?

MARILYN FAKE: They were. I can't really call it a recipe book—it was more of a nutritional guide.

The radiation just damaged everything. It burned his esophagus, first of all. So he couldn't really eat and enjoy a meal like he had before.

It was just guidelines to things that would help him along the way: jellos, lots of protein powders, potatoes and gravy, ginger drops—all of that stuff.

We lived in an apartment that a church had provided for us. We paid a little bit of money every month for that, and we used the bus to get back and forth to the cancer center.

When we were in there, you couldn't open the windows. There was no ventilation at all. I couldn't cook oatmeal—nothing. The smell of food cooking made him nauseated.

It got to the point where I would eat when he's in radiation. I'd eat at the cafeteria, or I'd bring cafeteria food home. He could smell it and he was vomiting.

I said, "You know, this is like living with a pregnant woman who's on menopause." It was so awful.

So then it resorted to me eating cold foods and eating out when he was in radiation. That was my hot meal of the day.

That kind of followed us home until his esophagus healed a little bit. But he had to take a lot of pills, and to get those down, there was only one remedy: Reese's brand raspberry parfait gelatin.

I would buy buckets of that. He loved it. He ate it all the time with his pills.

There's just so many little things that you just don't think about—flying with a patient like that, trying to get to the Denver airport one time. We almost missed our flight, and I was running, pushing him in the wheelchair. They held the flight because they knew it was a wheelchair person.

There's just so many little things—until you deal with it, you don't know how to deal with it.

How Can Caregivers Support Each Other?

ANNA JACKSON: I don't think anyone can fathom the things you go through when you're going through mesothelioma. I had a husband that passed away from melanoma, but I cannot fathom what you went through.

Every one of us grieves or works through things differently. You can have an idea of what people go through, and you can sympathize and empathize with them.

A lot of times, it's just helpful to know that there's someone out there that if you could reach out to them, they'd be willing to talk to you. Sometimes just being quiet with them.

MARILYN FAKE: Yes.

ANNA JACKSON: Because you're exhausted at some point, and you just need someone to just be there with you.

How Did Caregiving Lead to a Hospital Career?

MARILYN FAKE: When he spent the last month of his life at a hospital in Billings, Montana—the job I left to take care of him, I was a loan closer in a mortgage company. I'd been there for four or five years. I loved that job, but I had to leave it to do this.

After he passed, I told myself, "I want to work in that hospital. I want to give back to that facility—and MD Anderson as well. If I'd have lived in Houston, I'd have gone to work there if I could have."

The way they cared for him in both facilities really, really tugged at my heartstrings.

I told myself, "I'm gonna get out of this funk I'm in." This was in October, and he passed away in March. "I'm gonna go do what I have to do to get my foot in the door at the hospital."

That was CNA classes. So I took them. I wanted to work on the floor he was on—the oncology floor. They never had an opening. I made it to the emergency department as a technician.

Eventually I made it to lead technician position, where I supervised all the other ones. In that capacity, I worked a lot of trauma.

The staff soon found out my compassion for people who were dying. They paired me with the families. If I had rooms one, two, and three, and there was someone in eight, they'd move me just to be with that family because I was so compassionate.

We had a room that we would take the family into and talk to them. The chaplains worked with me on that. I was there for several families as they lost their loved ones.

What Is the "No One Dies Alone" Program?

MARILYN FAKE: After that, the chaplains asked me if I would be a part of a program called "No One Dies Alone."

It consisted of mostly homeless people that were in the hospital and weren't going to live very long. They handed me a duffel bag that had a little CD player, a beautiful instrumental CD, a light, a Bible, a book.

I would sit with those people as they passed. I didn't get to do very many of them, but that compassion came from me being the caregiver to my husband.

I really enjoyed that. I would like to see that program continue in hospitals and facilities today. They aren't mesothelioma victims—they're just people that are not going to survive.

I learned a lot. I taught myself a lot. My dying husband taught me a lot.

How Does Faith Help Caregivers and Families?

ANNA JACKSON: As people go through their lives, there are so many teaching moments for something that may happen later.

I was reading this book about a pastor that had been in a very bad accident. He survived, but he was in so much pain. When he was in the hospital, people would come and say, "Can I help you?" And he would say, "Oh no, thank you."

One of his best friends came to him and said, "You know, it's a blessing to have someone want to do something for you. Don't take away their blessings by telling them no."

After that, when my husband—when we found out he had melanoma—that book was kind of a helpful thing for me when we found out he wasn't going to survive. To allow other people to be blessed by doing stuff for me.

The things you went through with Billy helped you later and are still helping you. I think that's amazing. As much as we would rather have our loved ones here with us, I believe there's always a purpose for things that happen.

MARILYN FAKE: Yes.

How Did the Family Honor Billy's Final Wish?

MARILYN FAKE: One thing I would like to add before we close: He was much loved.

We used to belong to a club in the Billings area—a four-wheel drive club where we'd take excursions to the mountains all the time. He had the cutest rig, and everybody loved his talent, his ability to make that rig get in and out of the mountains with no problems.

I held on to his ashes for 16 years because he stated where he wanted them to be spread—in his favorite part of a mountain range close to home.

I was starting to have grandkids, and this area that he wanted to call home, you needed to hike into. The babies were all just too small and wouldn't handle the hike.

So we held on to those ashes, waiting for the day that we're gonna take Daddy and Grandpa to his resting place.

My oldest two children, Sundi and Jeremy, put together the most amazing event. It was a week-long ordeal for them. I was only there four days.

Several of that old four-wheel drive club came, along with new friends. My son in Butte had the biggest support system I've ever seen in my life. They came from Butte, Montana to Red Lodge, Montana in motorhomes and buses and side-by-sides. We had 25 of those people there with us.

The two kids had t-shirts made for all of us that said "Billy Fake, Cook City Memorial Run."

The day we were gonna take the ashes up, we asked the club and our guests if they could just give us some time. We told them at the end of the trail where we wanted to get out and do this. By then the kids had been up there several times. They learned we could drive, so we drove to the spot.

The club pulled off and let us go sprinkle—as my daughter Sundi would say—"sprinkle Daddy's ashes."

I've got amazing pictures of that. We got back in our little rigs and went further down the road, and those people had planned a picnic. They had hot foods in little warmers and tables and chairs and an amazing lunch for all of us.

They were at the end of the area. They could see where we had been, so they shared it with us just at a distance.

He's at peace. He's in his favorite spot—which is where I want to go when my time comes. But the support we got from that alone made it so much easier to have closure.

I no longer have his ashes here, but he's here. He's very present all the time. He's watching our grandkids grow. He's watching over my kids and myself.

That was pretty much the closure—saying goodbye to him, knowing that he was in his happy place. It was beautiful.

How Has the Family Grown Since Billy's Passing?

ANNA JACKSON: You've had some really great, amazing stories to share with everyone. Thank you for being here this morning. I know there are still a lot of things—especially when you have grandkids—a lot of things to keep you busy.

MARILYN FAKE: Well, I was gonna tell you the ages of my grandbabies—and this is an accomplishment.

I have three children: Jeremy, who's 49; Sundi is 43; and Mandy is 37.

Jeremy has been married since that day in the hospital room—February 26, 2009—to Kristen. Kristen had a little boy at the time, and now they have a seven-year-old son together: Braxton Billy Fake.

Jeremy is his dad's mini, and Braxton is the mini-mini. He looks just like his grandpa. He acts like him. It's wonderful.

Sundi was never able to have children, so she has a little farm with goats and animals.

And Mandy, my 37-year-old, has four children. Her oldest is 15, then she has a 10-year-old boy, a 9-year-old boy, and a 7-year-old girl.

The past four years, she's gone to college to become a nurse. She graduated in December with her RN. Her dad would be so proud of her.

She was so good with him, helping me take care of him. I knew someday she might become a nurse. She has to take the big state boards here in a couple weeks, and she's already got her job lined out for her.

I'm pretty sure she did that because of her dad. She's never admitted that, but I know he's watching over her and very proud of her for that, too.

How Do Families Navigate Grief Differently?

ANNA JACKSON: You did an amazing job with your family.

MARILYN FAKE: We had our rough times. The first couple years after he passed away, all three of my children dealt with it in different ways. Some of them were not so positive.

Finally, we all pulled together as a family. They got their lives back in order and just realized that was the grief they were dealing with.

ANNA JACKSON: It's tough losing someone, especially their dad or any parent for that matter. That's pretty tough.

Well, you've been amazing this morning. Thank you for sharing your life with us—the difficult times and the good times. It was just love stories. Thank you so much.

MARILYN FAKE: Thank you, Anna. And thank you to you and your co-workers. You guys are amazing. You'll always be my special friends.

I'd be glad to help you anytime you want. Just get in touch with me. There's a lot of people out there suffering. I'd like to help make the pain a little less.

ANNA JACKSON: We will keep in touch. Thank you, Marilyn.

MARILYN FAKE: Thank you.

Episode Closing

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 the Mesothelioma Applied Research Foundation (MARF)?

The Mesothelioma Applied Research Foundation (MARF) is an organization that advocates for mesothelioma patients and funds research into treatments and causes of the disease. MARF organizes events including an annual conference where patients and families can meet with scientists, attend educational sessions, and participate in advocacy efforts such as lobbying Congress for an asbestos ban.

Can asbestos be completely banned in the United States?

According to advocates and scientists, a complete 100% ban on asbestos is technically impossible because approximately 1% of asbestos exists naturally in the earth's mineral veins. This naturally occurring asbestos gets disturbed during activities like highway construction and other earthwork projects, making complete elimination unfeasible even with strict regulatory bans on commercial asbestos use.

Is there a connection between talc-based baby powder and peritoneal mesothelioma?

Research has confirmed a connection between asbestos-contaminated talc and mesothelioma. This question was raised at a MARF banquet in 2009, when scientists confirmed they were investigating whether baby powder use on infant girls could contribute to peritoneal mesothelioma in women. Years later, studies confirmed this link, contributing to major litigation against talc product manufacturers.

What nutrition challenges do mesothelioma patients face during radiation treatment?

Radiation treatment for mesothelioma can severely damage the esophagus, making swallowing painful and causing extreme sensitivity to food smells that triggers nausea. Caregivers report that patients often cannot tolerate the smell of cooking food and require soft, easy-to-swallow foods like gelatin, mashed potatoes, protein shakes, and ginger drops to manage nausea. One caregiver found that raspberry parfait gelatin was the only way her husband could swallow his pills.

What is the "No One Dies Alone" hospital program?

The "No One Dies Alone" program places trained volunteers with dying patients who have no family or friends present during their final hours. Volunteers receive a duffel bag containing a small CD player with calming instrumental music, a light, religious texts, and reading materials. Many volunteers who participate in this program have personal caregiving experience that prepared them for this compassionate work.

How long does it take families to find closure after a mesothelioma death?

Grief timelines vary significantly among family members. One family held onto their father's ashes for 16 years before fulfilling his final wish to be scattered at his favorite mountain location—waiting until grandchildren were old enough to participate in the memorial hike. The first couple of years after a death are often the most difficult, with family members processing grief in different and sometimes negative ways before eventually pulling together.

What surgeries are performed for pleural mesothelioma?

Extrapleural pneumonectomy (EPP) is a major surgery for pleural mesothelioma that can last nine hours or more. The procedure involves removing the diseased lung, repositioning and securing the heart, replacing the diaphragm with a synthetic Gore-Tex membrane, and sometimes covering the heart with Kevlar material. Recovery is extensive, often requiring wheelchair assistance and extended rehabilitation.

How can mesothelioma caregivers advocate for asbestos awareness?

Mesothelioma caregivers can advocate by participating in lobby days in Washington, D.C., attending MARF conferences, speaking at press conferences, and working with law firms to educate newly diagnosed families. Personal stories—especially visual ones like photo albums showing a patient's journey—can be powerful advocacy tools that move legislators and raise public awareness about asbestos dangers.

Resources

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.


Head Shot

David Foster

Host
Head Shot

Anna Jackson

Co-host