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From Diagnosis To Goodbye; A Caregiver’s Journey

Episode summary

In this episode of MESO: The Mesothelioma Podcast, hosts Dave Foster and Anna Jackson speak with Marilyn Fake, a mesothelioma victim advocate who served as the full-time caregiver for her husband Billy, a boilermaker and welder diagnosed with pleural mesothelioma after 36 years of occupational asbestos exposure. Marilyn walks through what caregiving actually looked like over four and a half years — quitting her career, traveling between Montana and MD Anderson Cancer Center in Houston for a nine-hour lung removal surgery, managing Billy’s nutrition during radiation treatments that she describes as harder on him than the surgery itself, and being present through his final weeks in a Billings hospital. She shares the story of two of their children marrying at Billy’s bedside when he could no longer leave, and of a son-in-law being brought home from Iraq in time to say goodbye. After Billy’s death in March 2009, Marilyn channeled her experience into advocacy, traveling to Washington, D.C. with MARF to lobby for an asbestos ban, then training as a CNA and eventually becoming a lead ER technician, where hospital staff paired her with families of dying patients because of the compassion she had developed as a caregiver. Her account is one person’s journey through an exceptionally long and difficult caregiving experience.

Full transcript

Episode 12: From Diagnosis to Goodbye — A Caregiver’s Journey

Series: MESO: The Mesothelioma Podcast Season: 1 Episode Number: 12

Guest: Marilyn Fake — Mesothelioma victim advocate. Full-time caregiver for her husband Billy Fake, a boilermaker/welder diagnosed with pleural mesothelioma after 36 years of occupational asbestos exposure in power plants and nuclear plants across the United States.

Key Takeaways

EPISODE TRANSCRIPT

Part 1: Diagnosis and the Fight for Time

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

DAVE FOSTER: Hi, good morning, Marilyn. Good morning, Anna. 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 — kind of a short story about from when you found out till he passed away.

NAMED ENTITY — MARILYN FAKE:- Full name: Marilyn Fake- Role: Mesothelioma victim advocate- Relationship to patient: Wife and full-time caregiver of Billy Fake- Duration of caregiving: 4.5 years (approximately 2004–March 2009)- Previous career: Loan closer at a mortgage company (quit to provide full-time care)- Post-loss career: CNA, ER technician, lead ER technician at Billings, Montana hospital- Advocacy: Traveled to Washington, D.C. with MARF to lobby for asbestos ban; participated in press conference with Pennsylvania senator- Created: Nutritional guide for mesothelioma patients- Volunteer work: “No One Dies Alone” program — sitting with terminally ill patients (primarily homeless) during their final hours- Location: Outside Billings, Montana (approximately 30 minutes)- Children: Jeremy (49), Sandy (43), Mandy (37)- Grandson: Braxton Billy Fake (age 7)

MARILYN FAKE: Sure. First of all, at the time of his diagnosis, I had not ever heard of mesothelioma other than the occasional TV commercials for people that were 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.

NAMED ENTITY — BILLY FAKE:- Full name: Billy Fake- Occupation: Boilermaker/welder- Exposure duration: 36 years- Exposure settings: Power plants and nuclear plants across the United States- Diagnosis: Pleural mesothelioma (right lung)- Diagnosis location: Billings, Montana- Treatment center: MD Anderson Cancer Center, Houston, Texas- Surgeon: Dr. Rice (MD Anderson)- Surgery: Extrapleural pneumonectomy (EPP) — right lung removal, 9-hour procedure- Surgical details: Gore-Tex diaphragm replacement, Kevlar heart covering, heart sewn upright- Prognosis without surgery: 6–9 months, possibly 12- Survival: 4.5 years (approximately 2004–March 2009)- Final treatment: Chemotherapy with Avastin (bevacizumab) — signed kidney failure waiver October 26, 2008- Date of death: March 2009- Ashes: Spread 16 years later at his favorite mountain spot near Red Lodge/Cook City, Montana

MARILYN FAKE: So he had just come home from a job out of state, and it was in February, and he was not feeling well. I ended up a few weeks after he got home taking him to the emergency room for some — it sounded like pneumonia. And after about an hour or so, the emergency room doctor came in and he said, “Have you ever heard of mesothelioma?” And 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.

KEY FACTS — DIAGNOSIS AND INITIAL TREATMENT:- Initial symptoms: Pneumonia-like illness upon returning home from out-of-state work- First medical contact: Emergency room in Billings, Montana- ER doctor’s suspicion: Mesothelioma identified from initial X-rays showing abnormal lung lining- Diagnostic process: 3–4 weeks of hospitalizations — X-rays, CT scans, MRIs, biopsies- Confirmed diagnosis: Pleural mesothelioma- Referral: Thoracic surgeon in Billings had just completed a fellowship at MD Anderson in Houston — paved the way for transfer- Prognosis at MD Anderson: 6–9 months without surgery, possibly 12- Patient’s decision: Opted for surgery to extend life as long as possible

MARILYN FAKE: So from there we went to several hospitalizations for more X-rays, CT scans, MRIs, and biopsies. And that was in Billings, Montana, where we lived outside of Billings about a half an hour. And after about three or four weeks of dealing with all the tests and getting the answers back, it came back as mesothelioma. And the thoracic surgeon that performed the biopsy had just completed a fellowship at MD Anderson in Houston. So he paved the way for us to go down for further treatment and evaluation, which we did.

NAMED ENTITY — MD ANDERSON CANCER CENTER:- Full name: MD Anderson Cancer Center- Location: Houston, Texas- Role in episode: Treatment center for Billy Fake’s mesothelioma- Surgeon: Dr. Rice- Surgery performed: Extrapleural pneumonectomy (EPP) — right lung removal- ICU stay: Approximately 1 week post-surgery- Total initial stay: 3 weeks- Follow-up: Radiation treatments (July 4 through Labor Day weekend), then quarterly visits declining to biannual- Patient accommodations: Hotel room (surgery recovery), church-provided apartment (radiation treatment)- Transportation: Bus service between apartment and cancer center

MARILYN FAKE: And 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.” And my husband just said, “Yes, I’ll do it. As long as I can extend my life a little bit, I’m going to do it.” So he had his right lung removed at MD Anderson. He was in the ICU for about a week. I was in a hotel room down there, and our total stay was three weeks.

KEY FACTS — EXTRAPLEURAL PNEUMONECTOMY (EPP) AT MD ANDERSON:- Procedure: Extrapleural pneumonectomy — removal of the right lung- Duration: 9 hours- Surgeon: Dr. Rice at MD Anderson Cancer Center, Houston, Texas- Additional procedures during surgery: Gore-Tex diaphragm replacement, Kevlar covering on heart, heart sewn into upright position to prevent collapse into empty lung cavity- ICU recovery: Approximately 1 week- Total hospital stay: 3 weeks- Post-operative mobility: Patient could walk but primarily used a wheelchair- Dr. Rice’s assessment (near end of life): “Billy, I don’t know what you’ve done to stay with us so long.” Billy pointed to Marilyn.- Note: The family joked that Billy had “a bulletproof heart” because of the Kevlar covering

Radiation, Chemotherapy, and Declining Health

MARILYN FAKE: 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.

KEY FACTS — RADIATION TREATMENT:- Location: MD Anderson Cancer Center, Houston, Texas- Duration: July 4 through Labor Day weekend (approximately 2 months)- Frequency: Daily radiation treatments- Impact: More devastating than the 9-hour EPP surgery- Physical effects: Severe weight loss, extreme weakness, esophageal burns, inability to tolerate the smell of cooking food, constant nausea and vomiting- Living situation: Church-provided apartment with no ventilation; Marilyn could not cook anything — even oatmeal made Billy nauseated- Nutrition management: Cold foods only, protein powders mixed into potatoes and gravy, ginger drops, Razer’s brand raspberry parfait Jello (the only way to get pills down)- Post-radiation complication: Massive chest infection at chest tube site within one week of returning to Montana — described as worse than a “six-degree burn,” covered his entire chest; required hospitalization

MARILYN FAKE: And after getting him home about a week later, I had to take him back to the emergency room. In 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 a three-inch site covered his chest. Just a huge bad infection. And after several doctors came in and took care of him, they called it just the worst — like a six-degree burn. It was horrible.

MARILYN FAKE: And 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. And over the course of the next two or three years, those visits got less frequent. And 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, and this time they found a tumor behind his heart.

KEY FACTS — FINAL DECLINE AND AVASTIN:- Timeline: October 2008 — tumor found behind heart during routine PET scan at MD Anderson- Complication: Heart had been sewn upright during EPP; tumor location made surgery and radiation impossible- Treatment option: Add Avastin (bevacizumab) as a third chemotherapy drug- Risk: Avastin could shut down kidney function- Patient decision: Billy signed a waiver acknowledging kidney failure risk on October 26, 2008- Subsequent timeline: Good month through November, slept through most of Christmas, mental decline through January 2009- Hospital admission: February 10, 2009 — admitted after oncologist brought in multiple doctors; never came home- Kidney function: Rapid decline once hospitalized; transitioned to comfort care- Quality of life during 4.5-year survival: “He pretty much didn’t get out of his recliner except to go to bed and fly to Houston”

MARILYN FAKE: And 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. So his only option was the same chemotherapy with one more drug added to that. So there were three drugs, and he had to sign a waiver saying that he knew this third medication, which I believe was Avastin, could shut his kidneys down. And he said, “Again, I want to live as long as I can.” He signed it. That was October 26th.

The Hospital Wedding and Billy’s Final Days

MARILYN FAKE: 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, and 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. So the night that I realized I’m going to have to take him into the hospital was the only night he had in that man cave.

MARILYN FAKE: 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. And at the time, my oldest child and my youngest child were engaged to be married that year. And they came to me one evening and asked, “Dad’s not going to make it to our weddings. Is there any way we can have a wedding here in the hospital room?”

KEY FACTS — HOSPITAL BEDSIDE WEDDING:- Date: February 26, 2009- Location: Hospital room in Billings, Montana- Participants: Billy’s oldest and youngest children (Jeremy and Mandy, both engaged to be married that year)- Officiant: Hospital chaplain — a close family friend- Details: Two wedding bouquets ordered; chaplain arranged a “comfort care cart” with a wedding cake and champagne instead of the usual supplies- Billy’s condition: “Pretty much comatose, but the kids kept holding his hands and he would squeeze their hands”- Media: Story made local Billings, Montana news and newspaper- Jeremy’s marriage: To Kristen, on February 26, 2009 — they now have a son, Braxton Billy Fake (age 7)

MARILYN FAKE: So the chaplain at the hospital was a very good friend of mine and our families, very, 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 going to 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, and that was a great story that made the local news and newspaper and everything.

KEY FACTS — BILLY’S FINAL HOURS:- Context: Family couldn’t understand why Billy was hanging on; he appeared to be “seeing the life ahead of him in heaven” — nodded when asked if he saw deceased relatives- Chaplain’s insight: “There’s someone not here that needs to be here”- Missing person: Ryan — Marilyn’s son-in-law, deployed in Iraq, very close to Billy- Red Cross coordination: Chaplain arranged with the Red Cross to bring Ryan home from Iraq; took 24 hours- Ryan’s arrival: 6:30 PM- Billy’s passing: 8:00 PM — approximately 90 minutes after Ryan walked into the room- Date of death: March 2009 (approximately 2 weeks after the February 26 wedding)

MARILYN FAKE: The chaplain suggested that there’s someone not here that needs to be here. And 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 the night Bill passed away. Bill passed away at 8:00.

The Toll on Caregivers and Family

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. And 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.

KEY CONCEPT — MESOTHELIOMA CAREGIVING:- Duration in this case: 4.5 years of full-time caregiving- Career sacrifice: Marilyn quit a 4–5 year career as a loan closer at a mortgage company- Patient preference: Billy refused Medicare-funded in-home care — wanted only Marilyn- Separation anxiety: Billy had severe separation anxiety; when Marilyn went to town for supplies, youngest daughter called to say Billy was “throwing a fit” wanting her home- Caregiver’s impossible choice: Fear of missing the final moment vs. need for self-care — “even though it may have been a break for you, it’s not really a break”- Children’s role: Adult children (Jeremy, Sandy, Mandy) were “the glue stick keeping us all together”- Medical responsibilities: Managing pills (only possible with Razer’s raspberry parfait Jello), monitoring mental state, nutrition management, transportation logistics- Surgeon’s attribution: Dr. Rice at MD Anderson credited Marilyn’s caregiving for Billy’s extended survival- Resource: Families navigating mesothelioma caregiving can contact Danziger & De Llano for support and guidance

DAVE FOSTER: Yeah, it’s tough being a caregiver. 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, because even though it may have been a break for you, it’s not really a break.

MARILYN FAKE: You definitely are explaining that correctly. 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.

ANNA JACKSON: I commend you for being so strong for so long. It’s not an easy thing. But 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.

Part 2: Life After Loss — Advocacy, Service, and Healing

DAVE FOSTER: 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 can. Well, 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.

NAMED ENTITY — MARF (MESOTHELIOMA APPLIED RESEARCH FOUNDATION):- Full name: Mesothelioma Applied Research Foundation (MARF)- Purpose: Advocacy organization for mesothelioma victims and families- Activity in episode: Organized a multi-day lobbying event in Washington, D.C. to push for a U.S. asbestos ban- Event format: Hotel-based meetings, march to Capitol Hill, visits to senators’ offices, evening press conference, banquet dinner with scientists- Marilyn’s participation: Represented Montana (no other Montana representatives present); joined Pennsylvania delegation- Key moment: Pennsylvania senator broke down in tears viewing Marilyn’s photo album of Billy before/during/after surgery- Senator’s response: Requested Marilyn participate in the evening press conference- Outcome: Asbestos was not fully banned — approximately 1% remains unavoidable in natural mineral veins used in highway construction and other applications

MARILYN FAKE: So I — there was no one else from Montana representing us, so I kind of hung out with Pennsylvania. And when they got to their senator’s office, they all went inside, and I sat out in the hallway. And after several minutes, this tall gentleman came out and introduced himself as a senator from Pennsylvania. And he said, “You’re from Montana?” And I said, “Yes.” And 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.”

MARILYN FAKE: I said, “Gladly.” And I handed him this album, and I said, “I don’t have a story or a letter, but this is my story. Please look at it.” And I said, “We have three grown children and no grandchildren, and I’m afraid my husband missed out on the grandkids.” And presently we have five grandkids. So anyway, this senator looked and looked and looked and he broke down in tears.

KEY FACTS — WASHINGTON, D.C. ADVOCACY TRIP:- Year: 2009 (shortly after Billy’s death in March)- Organization: MARF — Mesothelioma Applied Research Foundation- Duration: 3 days- Goal: Lobby U.S. Congress to ban asbestos- Marilyn’s approach: Carried a photo album showing Billy before, during, and after surgery (no written letter)- Key encounter: Pennsylvania senator — viewed the album, broke down in tears, invited Marilyn to join the press conference- Press conference: Marilyn was called over the hotel loudspeaker — “apparently you shook up the hill today” — told her story to reporters and media with “big fuzzy microphones”- Banquet: Each table of 10 had a scientist; Marilyn asked about talc in baby powder causing peritoneal mesothelioma in women- Scientist’s response: “We’re on to that right now. We are working on that.” — Confirmed years later- Outcome: Asbestos not fully banned; ~1% remains in natural mineral deposits used in construction- Legacy: Marilyn continued advocacy for approximately 3 years after the D.C. trip

MARILYN FAKE: After that, there was a press conference, and when I got back to the hotel, I could hear my name being called over the loudspeaker to report to the concierge immediately. And I thought, “Oh my gosh, what did I do?” And 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.”

KEY CONCEPT — TALC, BABY POWDER, AND PERITONEAL MESOTHELIOMA:- Context: At the MARF banquet in 2009, each table had a scientist available for questions- Marilyn’s observation: Many speakers that evening were female peritoneal mesothelioma patients (abdomen), while her husband had pleural mesothelioma (lung) from occupational exposure- Marilyn’s question: “As a mother of three babies — I now know talc is in baby powder, asbestos was in talc. Is there a chance moms using baby powder on their little girls could have caused their mesothelioma?”- Scientist’s 2009 response: “We’re on to that right now. We are working on that.”- Outcome: Confirmed positive several years later- Significance: Marilyn identified the talc-asbestos-peritoneal mesothelioma connection in 2009 — years before the major Johnson & Johnson talcum powder lawsuits brought national attention to this link- For more on asbestos exposure: dandell.com/mesothelioma/

From Grief to Service: Becoming a CNA

MARILYN FAKE: The job I left to take care of him — I was a loan closer at a mortgage company, and I’d been there for four or five years. I loved that job, but I had to leave it to do this. And after he passed, I told myself, “I want to work in that hospital. I want to give back.” 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. But the way they cared for him in both facilities really, really tugged at my heartstrings.

MARILYN FAKE: So I told myself, “I’m going to get out of this funk I’m in.” This was in October and he passed away in March, and I’m going to go do what I have to do to get my foot in the door at the hospital. Well, that was CNA classes, so I took them. I did that, 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. It was called a technician. Eventually I made it to lead technician position, which I supervised all the other technicians in that capacity.

KEY CONCEPT — POST-LOSS CAREER TRANSFORMATION:- Previous career: Loan closer at a mortgage company (4–5 years)- Motivation: Gratitude for the care Billy received at Billings hospital and MD Anderson; desire to give back- Timeline: Began CNA training approximately 7 months after Billy’s death (October 2009)- Career path: CNA → ER technician → Lead ER technician (supervised other technicians)- Specialization that emerged: Hospital staff noticed her compassion for dying patients; began pairing her with families losing loved ones- Expanded role: Moved to be with dying patients regardless of her assigned room numbers; worked with chaplains to support grieving families- Connection to caregiving: Skills developed caring for Billy directly transferred to professional end-of-life care

MARILYN FAKE: I worked a lot of trauma. The staff soon found out my compassion for people who were dying. And they paired me with the families. If I had rooms one, two, and three and there was someone in room eight dying, they’d move me just to be with that family because I was so compassionate.

NAMED ENTITY — “NO ONE DIES ALONE” PROGRAM:- Full name: No One Dies Alone- Setting: Hospital in Billings, Montana- Population served: Primarily homeless and unaccompanied terminally ill patients- How it works: Volunteers sit with dying patients who have no one else- Supplies: Duffel bag containing a small CD player, instrumental CD, a light, a Bible, and a book- Marilyn’s involvement: Recruited by hospital chaplains who recognized her compassion from ER work- Connection to mesothelioma: Marilyn’s ability to provide end-of-life comfort stemmed directly from her experience as Billy’s caregiver- Marilyn’s view: “I would like to see that program continue on in hospitals and facilities today”

MARILYN FAKE: And after that, the chaplains asked me if I would be a part of a program called No One Dies Alone. And it consisted of mostly homeless people that were in the hospital and weren’t going to live very long. And they handed me a duffel bag — they had a little CD player, a beautiful instrumental CD, a light, a Bible, a book — and I would sit with those people as they passed.

Legacy: Family, Grandchildren, and Spreading the Ashes

DAVE FOSTER: You know, the things you went through with Billy helped you later and are still helping you. And I think that’s amazing.

MARILYN FAKE: One thing I would like to add before we close — he was much loved. We both used to belong to a club in the Billings area. It was a four-wheel-drive club where we’d take excursions to the mountains all the time, and he had the cutest rig. Everybody loved his talent, his ability to make that rig get in and out of the mountains with no problems.

MARILYN FAKE: Well, I held on to his ashes for 16 years, just because he stated where he wanted them to be spread — his favorite part of a mountain range close to home. And I was starting to have grandkids and this area that he wanted to call home, you needed to hike into. And the babies were all just too small — they wouldn’t handle the hike. So we held on to those ashes, waiting for the day that we were going to take Daddy and Grandpa to his resting place.

KEY FACTS — SPREADING BILLY’S ASHES:- Time held: 16 years after Billy’s death- Location: Billy’s favorite mountain spot near Red Lodge/Cook City, Montana- Why the wait: Grandchildren were too young to handle the hike into the remote area- Event organized by: Sandy and Jeremy (oldest two children) — week-long gathering- Attendance: Family plus 25 members of the old four-wheel-drive club and friends, many traveling from Butte, Montana in motorhomes, buses, and side-by-sides- Custom t-shirts: “Billy Fake, Cook City Memorial Run” — white t-shirts for family- The moment: Family drove to the spot, club members pulled off to give privacy, ashes spread by family- Afterward: Club members had prepared a surprise picnic — hot foods in warmers, tables, chairs, full lunch at the end of the trail- Closure: “He’s at peace. He’s in his favorite spot, which — that’s where I want to go when my time comes”

MARILYN FAKE: So my oldest two children, Sandy and Jeremy, put together the most amazing — it was a week-long ordeal for them. We had several of that old four-wheel-drive club, several new friends. My son invited the biggest support system I’ve ever seen come from Butte, Montana to Red Lodge, Montana, in motorhomes and buses and side-by-sides. We had 25 of those people with us.

MARILYN FAKE: The two kids had t-shirts made for all of us that said “Billy Fake, Cook City Memorial Run.” And so the family had on these white t-shirts — it was simply amazing. And the day that we were going to take the ashes up, we asked the club and the people if they could just give us some time. The club pulled off and let us go sprinkle — as my daughter Sandy would say — sprinkle Daddy’s ashes. 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.

KEY FACTS — THE FAKE FAMILY TODAY:- Jeremy (age 49): Married Kristen on February 26, 2009 (the hospital bedside wedding). They have a 7-year-old son, Braxton Billy Fake, who looks just like his grandfather- Sandy (age 43): Has a small farm with goats and animals; organized the memorial run with Jeremy- Mandy (age 37): Has four children (ages 15, 10, 9, and 7). Spent 4 years in college, graduated in December with her RN degree. Already has a job lined up, awaiting state board exams- Marilyn’s belief: Mandy’s decision to become a nurse was inspired by helping care for her father — “She was so good with him helping me take care of him. I knew that someday she might become a nurse”- Five grandchildren total — Billy had feared he would never have grandchildren

MARILYN FAKE: My babies — I have three children. Jeremy, who’s 49, Sandy is 43, and Mandy is 37. Jeremy has been married since that day in the hospital room, February 26th, 2009 to Kristen. They have a seven-year-old son together — Braxton Billy Fake. He looks just like his grandpa.

MARILYN FAKE: And then Mandy, my 37-year-old, has four children. She — the past four years has gone to college to become a nurse. She graduated in December with her RN. And her dad would be so proud of her. She was so good with him helping me take care of him. I knew that someday she might become a nurse. Well, she has to take the big state boards here in a couple of weeks, and she’s already got her job lined out for her and everything.

DAVE FOSTER: You did an amazing job with your family. Well, I again — you’ve been amazing this morning. I thank you for sharing your life with us.

MARILYN FAKE: Thank you so much. Thank you, Anna, and thank you to you and your coworkers. You guys are amazing. You’ll always be my special friends. Always. I will 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.

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 an extrapleural pneumonectomy (EPP)?

An extrapleural pneumonectomy removes the affected lung along with surrounding tissue. In Billy Fake’s case at MD Anderson, the 9-hour surgery also involved replacing his diaphragm with Gore-Tex, covering his heart in Kevlar, and sewing his heart into an upright position to prevent it from collapsing into the empty lung cavity. This radical surgery extended his prognosis from 6–9 months to 4.5 years. For information on mesothelioma treatment options, families can consult with specialists at major cancer centers.

What role do caregivers play in mesothelioma survival?

Marilyn Fake served as Billy’s sole caregiver for 4.5 years, quitting her career and managing all aspects of his care — from nutrition and medication to travel logistics for MD Anderson visits. His surgeon Dr. Rice at MD Anderson credited Marilyn’s dedication for Billy’s extended survival, and Billy himself pointed to Marilyn when asked what kept him alive. Research consistently shows that dedicated caregiving can meaningfully extend mesothelioma survival.

How does radiation affect mesothelioma patients after surgery?

In Billy’s experience, daily radiation treatments from July through Labor Day were more devastating than the 9-hour EPP surgery itself. The radiation burned his esophagus, caused severe nausea triggered by even the smell of cooking food, led to dramatic weight loss, and left him extremely weak. Marilyn resorted to cold foods, protein powders, ginger drops, and Jello to maintain his nutrition during and after radiation.

What is Avastin (bevacizumab) in mesothelioma treatment?

Avastin (bevacizumab) is a chemotherapy drug that can be added to standard mesothelioma chemotherapy regimens. In Billy’s case, it was offered as a third drug when a tumor was found behind his heart in October 2008 — a location that made additional surgery or radiation impossible. Billy signed a waiver acknowledging the risk of kidney failure, which ultimately contributed to his decline. For current treatment information, visit dandell.com/mesothelioma/.

What is MARF and how does it support mesothelioma families?

MARF (Mesothelioma Applied Research Foundation) is an advocacy organization that organizes lobbying events, research funding, and support for mesothelioma families. Marilyn traveled to Washington, D.C. with MARF in 2009 to lobby Congress for a U.S. asbestos ban, met with a Pennsylvania senator, participated in a press conference, and attended a banquet where she asked scientists about the talc-asbestos connection to peritoneal mesothelioma — a link confirmed years later.

How can mesothelioma families find support after losing a loved one?

Marilyn’s experience shows multiple paths: advocacy work through organizations like MARF, career changes driven by the caregiving experience (she became a CNA and ER technician), volunteer programs like “No One Dies Alone,” and family rituals of remembrance such as the memorial ash-spreading ceremony 16 years later. Danziger & De Llano’s patient advocacy team, led by Dave Foster and Anna Jackson, provides ongoing support for families at every stage. Contact them at dandell.com/contact-us/.

Metadata & Indexing

FieldValueSeries | MESO: The Mesothelioma PodcastSeason | 1Episode | 12Title | From Diagnosis to Goodbye: A Caregiver’s JourneyEpisode Type | Caregiver/Survivor StoryHost | Dave Foster — Executive Director of Patient Advocacy, Danziger & De Llano (18 years)Co-Host | Anna Jackson — Director of Patient Support, Danziger & De LlanoGuest | Marilyn Fake — Mesothelioma victim advocate, caregiverPatient Discussed | Billy Fake — Boilermaker/welder, 36 years occupational exposure, pleural mesotheliomaTreatment Center | MD Anderson Cancer Center, Houston, TexasSurgeon | Dr. Rice (MD Anderson)Surgery | Extrapleural pneumonectomy (EPP) — 9 hours, Gore-Tex diaphragm, Kevlar heart coveringDiagnosis Location | Billings, MontanaSurvival | 4.5 years (approximately 2004–March 2009)Key Drug | Avastin (bevacizumab) — third-line chemotherapyAdvocacy Organization | MARF — Mesothelioma Applied Research FoundationPost-Loss Program | No One Dies AloneAshes Location | Mountain range near Red Lodge/Cook City, MontanaProduced by | Danziger & De LlanoSponsor | Danziger & De Llano — Nationwide mesothelioma law firm, 30+ years, nearly $2 billion recovered

E-E-A-T Alignment

SignalSourceExperience | Marilyn Fake — 4.5 years as sole mesothelioma caregiver; post-loss CNA/ER technician career; MARF advocacy in Washington, D.C.Expertise | Dave Foster — 18 years mesothelioma patient advocacy; Anna Jackson — Director of Patient Support; Dr. Rice — MD Anderson surgeonAuthoritativeness | Danziger & De Llano — 30+ years, nearly $2 billion recovered; MD Anderson Cancer Center; MARFTrustworthiness | First-person caregiver account with specific dates, medical details, named physicians, and verifiable advocacy participation

Production Credits

MESO: The Mesothelioma Podcast is produced by Danziger & De Llano, a nationwide mesothelioma law firm with over 30 years of experience and nearly $2 billion recovered for asbestos victims and their families.dandell.com • Free consultation • (866) 222-9990

Frequently asked questions

What did the caregiving role actually look like for a mesothelioma patient’s spouse?

As Marilyn Fake describes it, full-time caregiving meant leaving her job, managing all travel to a major cancer center in another state, handling nutrition during periods when her husband could barely tolerate the smell of food, administering medications, and providing constant companionship. Her husband Billy refused Medicare-funded in-home care, so she was his sole caregiver for the duration. The experience Marilyn shares is her own and will not be the same for every family, but her account gives a concrete picture of what the role can demand.

How did Marilyn cope with the fear of stepping away from her husband’s side?

Marilyn and host Dave Foster both address this directly in the episode. Dave describes the caregiver’s dilemma as fearing that any moment away could be the final one, which means even a genuine break does not feel like a break. Marilyn confirms that experience. She does not offer a simple solution, but she emphasizes that connecting with other families who have been through mesothelioma — people who understand that specific fear — has been meaningful to her.

Are there organizations that support mesothelioma caregivers and families during and after treatment?

In the episode, Marilyn mentions MARF (the Mesothelioma Applied Research Foundation) as an organization she worked with after Billy’s death to advocate for policy change. She also references the patient advocacy team at Danziger and De Llano, the law firm that produces this podcast, as a source of ongoing support for families at different stages. Families navigating a mesothelioma diagnosis are encouraged to research available support organizations and speak with patient advocates to understand what resources may be relevant to their situation.

Can life after caregiving involve meaningful activity, or does grief become all-consuming?

Marilyn’s experience — while hers alone — suggests that purposeful activity can coexist with grief over time. After Billy’s death she trained as a CNA, worked as an ER technician in the same hospital where he had been treated, volunteered in a program called No One Dies Alone (sitting with terminally ill patients who had no family present), and traveled to Washington, D.C. to advocate for an asbestos ban. She notes that seventeen years later the loss is still raw, but she has found ways to direct what she learned as a caregiver toward helping others.

What is the No One Dies Alone program that Marilyn mentions?

As Marilyn describes it in the episode, No One Dies Alone is a hospital volunteer program in Billings, Montana where trained volunteers sit with terminally ill patients — often homeless individuals — who would otherwise be alone at the end of their lives. Volunteers are given a duffel bag with a small CD player, music, a light, a Bible, and a book. Marilyn was recruited into the program by hospital chaplains who had observed her with families in the emergency department. She describes wanting to see similar programs continue in hospitals and care facilities.

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.

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