Shared Stories: How Asbestos Changed Our Lives Forever

SHARED STORIES HOW ASBESTOS

FOREVER

Foreword by Earl Dotter

Dedication

Shared Stories: How Asbestos Changed Our Lives Forever is dedicated to the brave Warriors who have shared their stories, tenderly expressed their pain, strengthened our community, and tirelessly fought to prevent all asbestos-caused diseases.

Introduction

Our 20th Anniversary Book

Shared Stories: How Asbestos Changed Our Lives Forever

It all began with a simple belief: every story matters, and every voice deserves to be heard.

When I first envisioned the "Share Your Story" campaign in 2008, my goal was to create a space for individuals to connect, share, and find strength in community.

This vision was sparked during my first trip to Washington, D.C., with my daughter Emily. I shared a photo of my husband, Alan, dancing with Emily, and told our story. Every young girl dreams of a fatherdaughter dance at her wedding, but because of asbestos, Alan and Emily might never have that moment. As I spoke, I saw tears in their eyes our story wasn’t just heard; it was felt. Staffers moved by it shared it with Senator Barbara Boxer and Senator Dianne Feinstein. It was then I realized how deeply personal narratives could inspire action.

As we mark ADAO’s 20th anniversary, this vision has grown beyond what I imagined. We are proud to introduce the 2nd edition of Shared Stories: How Asbestos Changed Our Lives Forever, a tribute to over 200 stories from asbestos victims and their loved ones worldwide. This book is not just a collection of testimonies; it’s a reminder of the resilience and unity within our community. These stories reflect diverse experiences but share a common thread of courage, loss, and hope.

This edition includes nine extraordinary conference posters by award-winning photojournalist Earl Dotter. Through his lens, Earl has beautifully captured our shared experiences, visually telling our stories in ways words cannot. This year’s poster, Badges of Pain || Voices of Change, continues this tradition, representing our community's collective strength. These posters, featured at ADAO conferences, stand as a testament to the strength and unity of our mission.

I want to express my heartfelt gratitude to Earl for his incredible dedication over the past decade. His artistry has not only captured images but the spirit of our community. Each BADGES poster tells a story that words alone could not, and I am deeply thankful for his partnership and friendship in this journey.

For nearly two decades, the dragonfly has been a tender symbol for the Mesothelioma Warrior community, representing the fragile beauty of life, the strength of unity, and the precious, fleeting nature of our time together.

Our first book in 2013 included about 70 stories. Since then, these stories have been shared online, with the media, and during congressional briefings. They have become a critical part of our advocacy, illustrating the devastating impact of asbestos and showcasing the power of hope.

These stories come from victims and families across the globe each from different walks of life but united by shared struggles. From industrial workers in the U.S. to families in Europe, India, and beyond, this book captures a mosaic of voices that show the pervasive and borderless nature of asbestos harm.

As we’ve gathered these stories, we have been humbled, inspired, and sometimes heartbroken. Each one deepens our resolve and reminds us why this fight matters.

Creating this book was an emotional journey for us all at ADAO. We’ve come to know many courageous individuals who’ve shared their pain, hope, and determination. Some stories begin with a dove icon signifying they were written before the passing of the Warrior. Out of respect, we do not edit these submitted stories.

These shared stories have done more than inspire; they’ve been powerful tools for advocacy. In congressional hearings, they’ve put a human face to the statistics, helping us secure bipartisan support for policy change. They’ve appeared in the media, raising national awareness of the ongoing dangers of asbestos. Your stories aren’t just words they’re a force for change.

Our new book, unveiled at the 20th Anniversary Asbestos Awareness and Prevention Conference, includes both newly submitted and previously published stories. It stands as a testament to our global community's strength and shared commitment to advocacy and prevention. During the conference, we’ll celebrate this book with tributes, storytelling sessions, and a panel on the power of personal testimony in driving change. It will be a time of unity, remembrance, and renewed commitment as we honor those who’ve contributed and those we’ve lost.

We hope this book is just the beginning. We invite everyone to continue sharing their stories, joining our campaigns, and standing with us as we push for stronger asbestos regulations. Together, we can amplify our voices and bring ourselves closer to a world without asbestos disease.

At ADAO, we have always believed that every voice deserves to be heard. As we commemorate 20 years of advocacy, we find strength in sharing our testimonies, supporting one another, and renewing our resolve to achieve a world without asbestos.

As you turn the pages of our lives, I want to sincerely thank Chris Carberg, who gives from his heart to help ADAO in countless ways and played a significant role in making this book possible.

With respect, remembrance, commitment, and love,

Linda Reinstein, Mesothelioma Widow of Alan Reinstein

Foreword

For nearly a decade, I've had the privilege of documenting the human face of the asbestos crisis through my BADGES exhibit and poster series for the Asbestos Disease Awareness Organization (ADAO). What began as a conversation over lunch with Barry Castleman in 2014 has evolved into a powerful visual narrative that spans nearly ten years and countless stories of pain, resilience, and hope.

As a photojournalist, my mission has always been to shed light on occupational and environmental health issues by personalizing them. The ADAO community has shown me that behind every statistic, every policy debate, and every medical diagnosis, there are real people with stories that demand to be told.

This book, “Shared Stories: How Asbestos Changed Our Lives Forever,” is the culmination of years of collective effort to give a voice to those affected by asbestos. It's a testament to the power of personal narratives in driving change and fostering understanding. I'm honored that all nine BADGES posters I've created over the years are included in this anniversary edition, providing a visual journey alongside the written stories.

Throughout this journey, I've had the fortune of working closely with Linda Reinstein, ADAO's Co-founder and President. Our collaboration on these posters has been a true partnership, blending visual storytelling with a deep understanding of the asbestos issue. Linda's insights and connections within the community have been invaluable in shaping the themes and focus of each year's poster. Together, we've strived to create visual narratives that not only capture the pain and challenges faced by those affected by asbestos but also highlight the strength, resilience, and hope within this community.

Each year, as we discuss the theme for the next poster, Linda brings the most pressing issues and stories from the ADAO community to the table. Her guidance has been crucial in ensuring that our visual storytelling remains relevant, impactful, and true to the experiences of those affected by asbestos. While I may be behind the camera, the collective effort of the entire ADAO team and community brings these posters to life.

Through my lens, I've captured protests at the Washington Monument, congressional testimonies, and intimate moments of remembrance. I've seen the determination in the eyes of advocates holding signs that read “Asbestos Kills” and “Ban Asbestos Now.” I've

witnessed the strength of families honoring loved ones lost to asbestosrelated diseases.

But what strikes me most is the unwavering spirit of this community. Despite the pain and loss, there is an indomitable will to fight for a future free from the dangers of asbestos. This book, with its more than 200 stories, powerfully embodies that spirit

As you read these pages, you'll find more than just accounts of suffering. You'll discover tales of courage, families supporting one another, and individuals turning their pain into purpose. From industrial workers to firefighters, patients to bereaved family members, each story adds a vital thread to the tapestry of our shared experience.

I'm honored that our BADGES posters have become a part of this narrative. From our first poster honoring Dr. Irving Selikoff in 2015 to our latest, “BADGES OF PAIN || VOICES FOR CHANGE,” each image aims to capture a moment in our ongoing struggle and inspire continued action. Having all nine posters included in this book allows readers to see the evolution of our campaign and the consistent themes of resilience and determination that have defined it.

This book is more than a collection of stories it's a call to action. It reminds us why we must continue to fight for a global ban on asbestos, for better protections for workers, and support for those affected by asbestos-related diseases.

As you turn these pages, I hope you'll feel the same sense of urgency and compassion I've experienced while working with the ADAO community. Let these stories move, inform, and inspire you to join the fight against asbestos.

Together, through our shared stories and collective action, we can create a world where no one must suffer from preventable asbestosrelated diseases. This book is a powerful step toward that goal, and I'm deeply grateful to be a part of it.

Earl Dotter, Photojournalist and Creator of the BADGES Exhibit and Poster Series supporting one another, and individuals turning their pain into purpose. From industrial workers to firefighters, patients to bereaved family members, each story adds a vital thread to the tapestry of our shared experience.

"Honoring

Dr. Irving Selikoff"

The Dragonfly

For nearly 20 years, the Mesothelioma Warrior community has embraced the dragonfly as a symbol of hope and the delicate beauty of life.

Much like the dragonfly’s graceful flight, our journey together is filled with moments of strength and vulnerability. Its short time in the air reminds us of the fragility of life and the importance of cherishing every moment we have.

The dragonfly’s transformation—from water to sky—mirrors the courage of those fighting mesothelioma, moving through challenges with resilience and grace.

In its wings, we see not only the struggle but the hope that shines through each of us as we continue to soar, united, in our fight for a future free from asbestos-caused diseases.

“I’ll Do Anything to Have More Time with My Family, Anything”

– Alan Reinstein’s

Story

Submitted by: Linda, Wife

Location: California

Diagnosis: Pleural Mesothelioma

1939 - 2006

In 2003, our world shattered.

After months of unexplained symptoms and countless doctor visits, my husband Alan was diagnosed with mesothelioma a word I couldn't pronounce, a disease I'd never heard of, and one doctors couldn't defeat. I still remember the day we first heard the word “mesothelioma.” The doctor's words hung in the air like a dark cloud, suffocating the room. I sat there, stunned, as our future suddenly became uncertain, filled with fear and the looming shadow of a disease we knew nothing about. The fear and shock of a mesothelioma diagnosis was paralyzing to me.

Before this devastating diagnosis, Alan and I loved to run marathons, hike Half Dome, ski black diamonds, and sail. We were adventurous, full of life, and never imagined how quickly it could all change.

The mesothelioma learning curve was steep and painful. Through searching for medical treatment, I made a horrifying discovery: asbestos had not been banned and was responsible for one of the largest man-made disasters in history. We naively believed our government safeguarded us from toxic threats. We were wrong.

Alan fought a hard three-year battle against mesothelioma, showing incredible strength and resilience. His asbestos exposure forced our 10-year-old daughter to witness her father's slow, painful decline from a preventable disease. Our story, heartbreakingly, is far from unique. In his final year, Alan was tethered to supplemental oxygen, like a dog on a leash, fighting with every breath. Yet, he fought with unwavering determination, telling doctors, “I'll do anything to have more time with my family anything.”

Alan was more than just a husband and father; he was a pillar of strength for everyone who knew him. His kindness, generosity, and unwavering spirit touched the lives of many. Even as the disease took its toll, Alan remained a source of inspiration, teaching us all the true meaning of resilience and courage. His legacy lives on, not just in our hearts, but in the countless lives he impacted.

In the aftermath of Alan’s passing, I was faced with a choice: to be consumed by grief or to channel that pain into something greater.

Co-founding the Asbestos Disease Awareness Organization with Doug Larkin allowed us to turn our anger into action and build an unbreakable bond as colleagues and partners in the fight to ban asbestos. Doug passed away from ALS in 2017, so I continue our mission and vision that we created in 2004

It hasn’t been easy, but every step forward in our fight for justice and awareness has been a tribute to Alan’s enduring strength. We’ve faced setbacks and triumphs, but with each new milestone, I know Alan is with me, guiding our efforts to ensure no other family suffers as we did.

Cancer has taught me many lessons about navigating my new normal and becoming a single mom. The Reinstein family lives by two mottos: live a life without regrets and Reinsteins never give up. Both have been sources of strength and resilience, connecting Emily and me to Alan. Mesothelioma has also taught me the true power of friendship and the importance of self-care.

Alan’s fight didn’t end with his passing; it lives on in every action we take to eradicate asbestos. I ask you to join us in this battle to raise your voice, to demand change, and to help us build a future where asbestos no longer claims innocent lives. For Alan, for our daughter, and for every family touched by this tragedy, we must unite to end this deadly legacy.

Co-founding the Asbestos Disease Awareness Organization with Doug Larkin allowed us to turn our anger into action and build an unbreakable bond as colleagues and partners in the fight to ban asbestos. Doug passed away from ALS in 2017, so I continue our mission and vision that we created in 2004 onward together in memory of Alan, Bill, Doug, and many others who have become part of our shared story.

“We Made the Best of the Time We Had Left” – Alan’s Story

Submitted by: Kerry, Wife (unedited)

Location: Washington

Diagnosis: Mesothelioma

1952 - 2015

In my husband’s 60th year we noticed his health declining. We went to the doctor numerous times, but no one could pinpoint what was going on until in November of 2014 he was found to have fluid pressing on the outside of his lungs.

After draining the fluid suspicious lesions were found so he had thoracic exploratory surgery. Two tumors were found and sent off to pathology. I was waiting in the ICU when the surgeon called me out into the hallway he asked…”Did your husband ever work around asbestos? I swallowed hard and said not that I am aware of. I spent the rest of the night looking up Mesothelioma that night on the web, crying…knowing that my husband was just handed a death sentence. When he recovered from the surgery sufficiently, we did research together…realizing he had probably a year or two at the most left we took the time off work and went to visit his family in Australia…a lovely trip.

He made the decision to opt for quality of life over quantity and we made the best of the time we had left…He had wonderfully supportive hospice care, but sadly his body could no longer support his spirit on June 23rd, 2015.

I held his hand…. and will miss him every day for the rest of my life. Apparently, he had been exposed as a child to asbestos fibers from his dad’s work clothes, and asbestos cement products in the house he grew up in.

“I Was Left Without My Biggest Supporter” – Alessandro’s Story

Submitted by: Paolo, Son

Location: Milan, Italy

Diagnosis: Mesothelioma

1941 – 2002

If I’m a filmmaker, it’s because of my father. My Dad was an accountant with a high school diploma, working 9 to 5 in a big corporation. But he had a true, deep love for movies and when I told him I wanted to become a film director, he supported my dream all the way.

In 1999 he was diagnosed with pleural mesothelioma. He put up an extraordinary fight and he passed away three years later. He missed the whole development of my career, and I was left without my biggest supporter.

After 12 years, we still have no idea how he got in contact with asbestos.

My short film, THE MOTHER is dedicated to his memory.

“His Vocal Box Was Taken Away From Him” – Alfred’s Story

Submitted by: Travis, Grandson (unedited)

Location: Louisiana

Diagnosis: Mesothelioma

1944 – 2001

My grandfather was the father of 13 and grandfather of many. He was known for being the most well known, jolliest person in Iberville Parish (County), Louisiana. He had worked 40 years for DOW Chemicals as a laborer before he found out he had throat cancer

His vocal box was taken away from him in the summer of 1994. For seven years, he went from the well known, jolliest person in Iberville Parish (County), Louisiana to the well known, saddest person in Iberville Parish (County), Louisiana. At the end of those seven years on October 31, 2001, he sadly died. I remember seeing the entire transition and it still bothers me. I got married in 2020 to my wife on the anniversary of his death. He was very close to me and I have great stories of him. I wish he could had lived to see at least one of my kids. He was robbed of it.

Currently, I been an environmental/workforce/community activist for 15 years helping others mainly in Cancer Alley (between Baton Rouge and New Orleans) in Louisiana, so no one would have to go through what I went through. I also help people around the nation and all the world. This helps me with closure as well. Bittersweet, my grandfather won close to $4 Million dollars. However, he could not live to enjoy it and our family is still left grieving his death. I urge people to make sure they watch over their love ones and stand up in this world against corruption. My grandfather voice box was taken away, but I am now being his voice from his legacy.

Thank you all who are fighting in this cause.

“Stole My Father From Me Like A Thief In The Night” – Alfred’s Story

Submitted by: Chrissy, Daughter (unedited)

Location: New Jersey

Diagnosis: Mesothelioma

1930 – 2014

Besides the most obvious, which is stealing my father from me like a thief in the night because of how fast the disease rapidly attacked him, it has opened my eyes to how insanely ridiculous healthcare truly is.

I was my father’s caretaker, decision maker, advocate, accountant, lawyer, chef and most importantly, his daughter. The minute his cat scan results came back as asbestos, I came to realize real quick how terrible his insurance was. I had to back door, fight, lie to get him the best treatment anybody could ask for.

Because of everything I went through and witnessed, I have created a petition on Change.Org to help pass bill HR 817 into a Federal Law for all states. This bill if passed, will eliminate the excess stress to the patient and their family every time they walk into an Emergency Room. This bill states that in an emergency/trauma situation, when you are visited by an array of doctors, that now, these doctors must introduce themselves to you and let you know if they are in or Out of Network. If these Drs. are Out of your network, the hospital must provide you with an In Network provider. If at that time there are no In Network Doctors, the Out of Network Doctor will now become in network, but the KEY factor to this is that they will no longer be allowed to BALANCE BILL YOU the difference on what they get paid and what they think they are OWED! I am asking for help to please sign and pass my petition to others to be educated and aware of their options.

“Love Is Stronger Than Cancer” – Ana’s Story

Submitted by: Daniel, Husband

Location: Columbia

Diagnosis: Mesothelioma

1975 - 2017

Ana Cecilia Niño (@AnaCnio) is a Colombian journalist with mesothelioma. She has published in the mass media of her country the problem of asbestos. Ana lived in her childhood near a factory called “Eternit-Colombia” which used asbestos in the manufacturing of tiles and other elements.

After giving birth to a beautiful baby in 2013, Ana suffered severe pain in her back during 2014, finally individual tests were performed which diagnosed her with advanced mesothelioma later that year. Doctors gave her no more than 6 months, but Anna wanted to live, so she elected to have an extrapleural pneumonectomy operation. She began treatment of radiotherapy and chemotherapy which she still receives. In February 2015 Ana married her prince charming Daniel Pineda (@historiasazules), a man who would die for her and fighting with her to see a Colombia without asbestos in the Congress and the Courts of Bogotá.

Ana is leading a campaign to ban asbestos in Colombia, which has already collected over 14,000 digital signatures: change.org/colombiasinasbesto This year the tumor grew back, but despite the severe pain that causes the tumor Ana actively participates in forums, seminars and the formation of an association of people affected by asbestos.

Her husband mentions the following: we have not found a cure, but perhaps the best remedy for cancer we have it, it enters us, they are our children, hope that illuminates his eyes, maybe we get him in the heart, it is the divine inside us: our love, love for life, love for those who come after us, that job, that substance is stronger than cancer.

“Women and Mesothelioma” – Anita’s Story

Location: Australia

Diagnosis: Mesothelioma

1962 - 2011

I had exposure to asbestos when I was about 4 or 5 and was diagnosed with mesothelioma about 40 years later. It took 12 months to finally receive a diagnosis.

The tumors were discovered during exploratory surgery and the surgeon made the call to remove the lining of my right lung on the spot. Immediately following this I did chemotherapy with Alimta and Cisplatin. After 6 sessions of chemo PET scan declared me to be in complete remission with no traces left of any tumors. A few months later, aged 46 I fell pregnant and Emma was born in December 2008. October 2010 the mesothelioma returned and I’m currently having chemo again. My last scan showed a moderate reduction in my tumors.

I believe I have a pretty positive outlook. I have a lot of faith in medical science and the speed at which new knowledge about cancers are being discovered. I truly believe that sooner rather than later there will be a cure for this and for most cancers. I believe that using current treatments many of us can hopefully keep hanging in there until a true cure comes along.

In October last year my tumors returned. I have been undergoing chemo since then and have had some good results with reductions in my tumors. My daughter is my inspiration to keep fighting this and I continue my faith that some cure soon will be discovered.

I have been telling my story as a means of promoting awareness. For example, 17th May 2001 on Channel 7 news in Australia, there is a feature on Women and Mesothelioma where I talk about the increase in diagnosis of women with Mesothelioma.

“Fighter” – Annamarie’s Story

Location: Utah

Diagnosis: Mesothelioma

Born 1963 - 2019

In October 2014 while vacationing in Hawaii with my family, I was unable to walk 5 steps without having to stop to catch my breath.

Upon returning home and having several tests, I found out that I had a rare cancer called mesothelioma. It is hard enough to hear the word cancer and then find out that your cancer was caused by asbestos. I have endured several painful procedures and have been hospitalized half a dozen times and had 8 rounds of chemotherapy.

In May 2015 I had Pleurectomy Decortication surgery from Dr. David Sugarbaker, which saved my life. I am a fighter and will not give up until a cure is found for this horrible disease. I have been so blessed by the support from friends, family and the mesothelioma community in which I am proud to be a part of.

I will not stop fighting or advocating until a cure if found for this horrible disease.

“He Was Cheated From Life” – Anthony's Story

Submitted

by: Grace,

Location: California

Mother (unedited)

Diagnosis: They treated him for something other than asbestos cause they would not believe he was exposed.

1983 - 2009

He was exposed at 1yr we moved into a house renovated from top to bottom. We never knew asbestos was in the house.

He died at 26 all complications lead to asbestos but because of his age doctors would not believe us he had been exposed.

He was cheated from life and doctors don't understand nor want to investigate more into what other health problems it causes. He never had a chance to have a family he lived in pain that doctor could not find answers for.

Lungs full of fluid it damaged his liver I need to be heard someone has to listen I have reports.

“An Enormous Shock” –

Jim’s

Story

Submitted

by:

Jennifer, Daughter (unedited)

Location: Sydney, Australia

Diagnosis: Mesothelioma

1939 - 2015

My father was diagnosed with mesothelioma early January 2015. It came as a complete shock to everyone. Dad had hardly ever been sick apart from the very occasional bad cold.

It turns out my father worked as a motor mechanic in the 1950’s only for about 4 years before becoming an accountant for the rest of his career.

From that day of diagnosis my father was told he had a limited life span and to “get his affairs in order”. It was very distressing for my parents and family to hear that.

The months after his diagnosis in January he was constantly in severe pain from the cancer which was already advanced at time of diagnosis and had spread from the right lung to all over the chest, back and ribs on the right side. It took many months to get the severe pain under control, he couldn’t even sleep in the bed at home, he slept in a recliner chair due to the pain of lying down.

My father and mother’s life, as mine, for the whole of 2015 until his passing became a constant blur of hospital appointments, numerous emergency hospital trips, lengthy hospital stays, treatments, research, and discussions about his condition. Due to the pain and fatigue, he became a prisoner in his own home when he wasn’t at the hospital. He completely lost all quality of life. My parents had booked numerous travel adventures this year and social activities. All had to be cancelled.

We hoped and prayed for a miracle cure but that wasn’t to be.

My father withstood treatment including a pleurodesis surgery, chemo, a blinded clinical trial (we think he sadly received the placebo), and a new immunotherapy drug. He also suffered many other problems as a result of his disease and had multiple blood transfusions, heart problems due to the cancer, collapsed veins, and kidney issues amongst other things.

The last 5 weeks he deteriorated very quickly and required oxygen. We still hoped for a miracle cure.

My father fought the most courageous battle against this disease. He had the most aggressive cell type so the odds were always against him. Still he battled on bravely.

Unfortunately he became weaker and weaker in August and September. We were told that he would pass away multiple times in September. It was still an enormous shock when he finally did on 13th September.

You still hope against hope that it won’t happen. At the same time it is absolute torture seeing the person your mother, family and yourself loves so much suffering so badly that you find yourself wanting peace for them, and to be ridden of such suffering.

Mesothelioma robbed me of my Dad and robbed him of so many years ahead of him if it wasn’t for this insidious disease. My and my brother’s father was also a husband, grandfather, father-in-law, uncle, and friend. In the many months suffering so badly with this disease, my father was surrounded by family, at the end often staying with him overnight in his hospital room.

We pray my brave father is now at peace, free of suffering and in Heaven.

“I’m Currently on 17 Medications” – Arthur’s Story

Location: South Carolina

Diagnosis: Asbestosis

Born 1945

I was forced to retire at 43 years old. My income has dropped beyond belief. I had to fight for Social Security Disability check for 5 years. My wife has passed away while I'm still fighting.

I’m currently on approximately 17 medicines.

Before that was on 2 liters oxygen at night to sleep since Dec 1993. I also now have to have 2 liters oxygen when I do morning walk at the mall.

“Life Can Change So Fast” – Barry’s Story

State: Louisiana

Diagnosis: Pleural Plaques/Scarring Born 1955

Can’t work. Can’t strain or do too much or lose breath.

Just have to be calm and be careful what I do.

Now I lost my home to a fire. It was set up for my breathing with filters and dehumidifiers.

Life can change so fast.

“Nothing Short Of A Miracle” – Barry’s Story

Location: Australia

Diagnosis: Mesothelioma

1944 - 2016

Having worked as a builder and handled asbestosrelated products most of my life, I was not surprised when I was diagnosed with the terminal disease mesothelioma in February 2010 – I was devastated Living in Tasmania at the time, my wife and I soon realized we needed to relocate back to Perth Western Australia to be with our family. The months following were difficult for everyone as I became increasingly unwell. By October that year I was a shadow of the man I had once been; on morphine for the pain, the specialists had given me only weeks to live. It was at this point, my wife had a serious accident. The realization that she needed me caused my despair to turn to hope; the dark cloud of depression was cast aside and my life took on new meaning and purpose. Five years on and through nothing short of a miracle, I am still around today.

Asked to share my story as an encouragement to others, in May 2015 we launched my book – Reflections through Reality – a memoir of my struggle with the reality of my diagnosis and subsequent sickness; the slowdown in the disease; the rare luxury of being able to reflect on my life, my relationships and my purpose as I face an unknown future. Having experienced first-hand the loneliness associated with this disease, my wife and I have set up a support network for fellow sufferers and their families. The Reflections Through Reality Foundation has been established to raise funds for medical research and to create further awareness of the risks associated with handling asbestos-based products.

WE NEED TO WORK TOGETHER TOWARDS A CURE FOR THIS INSIDIOUS DISEASE. To purchase my book go to www.reflections.org.au. All proceeds of book sales go direct to medical research.

“One in a Million” – Bernie’s Story

Submitted by: Karen, Wife (unedited)

Country: Australia

Diagnosis: Mesothelioma

1946 - 2007

Bernie and I met and married in 1991. We were blissfully happy and life was wonderful. We attended a New Year’s Eve party (1998) where Bernie recognized a lady he had not seen in many years. Her late husband had been Bernie’s shift foreman at James Hardie Bradford Insulation – a factory that manufactured asbestos lagging for power stations. Bernie had worked there from 1968 to 1974.

Hearing Eileen share of her husband’s battle with mesothelioma – it suddenly occurred to me why Bernie had experienced unusual breathlessness months earlier at Thredbo ski resort. In July that year, we had driven to the Snowy Mountains with our young son Dean, for a ski holiday. As soon as we were on the snow, Bernie complained he could not breathe properly. So instead of skiing, he sat out the week watching beginner skiers attempting to stay upright, while Dean and I ‘hit the slopes’. We returned home and Bernie’s health seemed fine, so we gave his ‘high altitude’ breathlessness no more thought.

Bernie was diagnosed with asbestosis early 1999. From that time on, our lives were forever changed. By February 2000, Bernie could no longer continue in the funeral industry due to the physical nature of his work. From late 2000 onwards, Bernie and I became very involved in advocacy with a Sydney-based asbestos related disease (ARD) support organization. Early in 2004, the New South Wales State Government initiated a Special Commission of Inquiry regarding James Hardie’s move offshore, and

Bernie (now requiring supplemental oxygen 24/7) became the public face on behalf of ARD sufferers in the fight for justice.

Eventually, the ‘victims’ became the victors, and in February 2007 Hardies commenced payments to an Asbestos Injury Compensation Fund, an agreement expected to amount to $4.5 billion over a 40-year period. The cause became all-consuming for Bernie, his passion and tenacity ‘winning the day’ concerning many asbestos related issues. However this unrelenting effort took a huge toll on his health. It greatly impacted our family life also.

On August 17, 2007, Bernie was diagnosed with peritoneal mesothelioma. Once again, he fought valiantly. Ready to enter into heavenly rest, Bernie died peacefully on November 27, 2007. Bernie Banton AM was honored and farewelled by thousands of Australians at a State funeral.

“Diagnosis and Treatments Completely Changed My Life” – Betsy's Story

Location: Pennsylvania

Diagnosis: Mesothelioma

Born 1985

My mesothelioma diagnosis and treatments completely changed my life. It opened my eyes to the negative and misguided ways I was living and motivated me to do better.

I wake up every day with the goal of pursuing my passions and nourishing my body the best way I know how.

I am creating art and embracing a plant-based diet and feel healthier and happier than ever before. I know it may not prevent the disease from returning but I feel empowered by taking charge of the aspects of my life which I am able.

Betsy is featured in the Podcast “Rock vs. Cancer” and her story begins at 06:15. Also, if you would like to read more about Betsy, visit her site and check out her blog.

“Asbestos Took My Soul-Mate”

– Bill’s Story

Submitted by: Bobbie, Wife (unedited)

Location: Virginia

Diagnosis: Mesothelioma

1943 – 2004

Bill and I met after we each had adult children. Our friendship quickly blossomed into a true “soul-mates” relationship. We enjoyed our combined family with lots of love and good times together. Bill loved life – especially family, friends, our cottage on the river, nature, boating and fishing. He was extremely talented in many ways and was a very friendly, out-going, lovable person.

In September 2003, Hurricane Isabelle roared through Virginia and almost destroyed our home on the water. While trying to recover from that catastrophe, it became evident that Bill did not feel well. He went to the doctor who told him he had a collapsed lung and referred him to a lung specialist.

In January 2004, the lung specialist admitted him to the hospital to run some tests. We were told that his lung had collapsed because he had Pleural Mesothelioma, a rare cancer caused by asbestos. We were also told he only had a few months to live. He had worked in the shipyard when he was very young.

After many tests and doctor appointments, Bill endured a very complicated lung operation in March 2004. After recuperating for about a month, he seemed to feel somewhat better. However, it soon became apparent that his health was declining rapidly. He required oxygen most of the time and was in a lot of pain. Watching him suffer so badly was very difficult. On August 10th, 2004, Mesothelioma claimed his life. Mere words cannot express how much we (his children, step-children and I) still love and miss him, and how angry we are that he suffered and died from a cancer that never should have happened. Asbestos is Deadly!

“Missing Him” – Bill’s Story

Submitted by: Robyn, Daughter (unedited)

Diagnosis: Lung Cancer with documented asbestos exposure 1931 - 2008

My dad served in the Navy during the Korean War. He was a boiler room technician (which was/is one area of high exposure to asbestosis). He was so proud of his service and my family was also proud of his service. I learned patriotism from my dad.

He was diagnosed with small cell cancer in the lung in March of 2007. He did well with chemo and radiation therapy in the subsequent months and had a very positive attitude.

And in March of 2007 I bought a condo and he had the chance to see that. He was doing well until Dec 2007/Jan 2008. Then near the end of February 2008 after a PET scan which had been good until this time showed that he had maybe 4 to 6 weeks of his life left. And he chose to spend that time at home (and thank God for Hospice they were awesome in helping him and my family). He passed away on March 17, 2008.

I had begun a legal case with his permission about 2 months before he passed. And he was too sick to initially assist in that. But after he passed, I continued to pursue the case on behalf of my mother. After about 4 years from when I started that, money began to be paid to my mother from the asbestos companies involved. The money, of course, would not bring my dad back. But my family and I are happy that what my mom received gave her a bit of a cushion financially.

Fortunately, my dad had a CAT scan prior to his lung cancer diagnosis that showed “pleural plaques consistent with asbestos exposure”. That was significant in my pursuing the case. And in addition one of his shipmates was able and willing to provide a deposition (including photos) to the attorneys involved. We will be forever thankful to him for that. And another man also provided an affidavit that made it clear and without

doubt that my dad was not exposed to asbestos after a specific year based on the work that he had done. And we will be forever thankful for his help also. It was a lot of work to get through all this, but was worth it for our mother’s sake.

As of 3/17/13 it is now 5 years since my dad passed and we still miss him so much…but know he is in a better place free from pain and suffering.

“A Family Devastated by Asbestos Exposure” – Blayne’s Story

Submitted by: Sandra, Wife (unedited)

Location: Canada

Diagnosis: Mesothelioma

1946 - 2004

Asbestos has changed my life by robbing me of my future with my husband. Since my husband’s diagnosis and eventual death, my life has changed forever.

On May 24, 2002, Blayne came home from work saying he had difficulty breathing. He had never been sick a day in his life before. After his admission to the hospital, he was told he had a very rare form of lung cancer, Mesothelioma. We were told to go home and get our affairs in order, that he only had 4 months to live.

The day Blayne died I lost the love of my life. Blayne was a strong advocate of health and safety, how ironic that he should succumb to this horrible disease. He fought for those who could not and he fought until the end. By making his story a public one he helped to shed a light on this disease and the shameful exportation and practice and the use of asbestos; by exposing the dirty secret of asbestos and occupational disease in our community.

Since then I have been keeping his memory alive by helping to tear down the walls to stop the export and use of this product. Even through this devastating disease he has taught me many things. He showed me how strong a woman and advocate I could be not only for him but to help others around me, in the same situation. I will continue to honor his memory by continuing to advocate against this product and I have hope for the future. A future without asbestos and occupational related diseases. Since the loss of my husband, my family has lost 4 other members to Mesothelioma and 3 others to Occupational Related diseases. My family has been devastated by exposure. “I didn’t go to work to die.”

“A Hole in Many Lives” – Bob’s Story

Submitted by: Barbara, Wife (unedited)

Location: Nebraska

Diagnosis: Mesothelioma

1947 - 2008

Bob will always be remembered for his dry wit and his commitment as a father, brother, and friend. His loss left a hole in many lives.

Bob spent his early working years as a teacher and coach. He coached football and baseball, including leading a team of teenage boys to the Nebraska State Championship. He left teaching to pursue other business interests but remained an avid sports fan and competitive slow-pitch softball player. Bob also derived great pleasure (and some pain) from horse racing, particularly as a partner in several racing stables.

Bob was diagnosed with diffuse malignant pleural mesothelioma in September 1997 at the age of 50. He had been exposed to asbestos during a summer job 30 years earlier. In November of 1997, he had surgery to remove his right lung, pericardium and diaphragm. He then underwent chemotherapy and radiation. Bob’s recovery was long and arduous, but he faced it with courage. He was told that he had no more than 18 months to live. Bob beat the odds, remaining cancer-free for over five years.

In September of 2003, Bob was diagnosed with a recurrence of mesothelioma, this time in his abdominal cavity. He decided against further surgery and opted to undergo a regimen of chemotherapy using Cisplatin and Alimta. He continued with chemotherapy for four years, often dealing with debilitating side effects. But he always maintained his sense of humor and his determination.

Bob lost his battle with mesothelioma on July 30, 2008.

“10 Year Survivor” – Bonnie’s Story

Location: New Jersey, US

Diagnosis: Mesothelioma

1948 - 2023

My world has become a roller coaster ride dealing with my mesothelioma caused by washing my husbands asbestos laden clothes.

Between fighting depression and dealing with other medical issues caused by meso treatments, My life is nothing like I imagined it to be.

I have become an advocate for patients and caregivers, I speak to anyone who wants to find out about Meso and asbestos.

-Bonnie 10-year survivor

“Living With A Time Bomb” – Bracy’s Story

Submitted by: Mary Lynne, Wife (unedited)

Location: Missouri

Diagnosis: Asbestosis

1939 - 2022

In 1970 my father-inlaw Clarence Borel died of Mesothelioma.

The awareness of the danger of asbestos began on that day.

After sitting through the Borel trial it was very hard to believe the danger of asbestos had been kept quite for so long, allowing so many deaths.

Not only had my husband been exposed since birth, he also was an asbestos worker since he was sixteen.

We realized then we had exposed our three children. From then on we were living with a time bomb. We changed our occupations and moved to a rural area.

My husband and three of his sisters are now suffering from asbestosis. The diminished lung function has made my husband’s fight with cancer even more difficult. I have watched my mother die from asbestosis and my brother-in-law die from mesothelioma.

Yes, asbestos has changed our lives.

“I Continue In His Honour” – Brian’s Story

Submitted by: Clair, Wife (unedited)

Location: United Kingdom

Diagnosis: Mesothelioma

1952 - 2015

After 25 years of marriage and 27 years together, I miss Brian every day. He dedicated his life to teaching and later to Chiropractics and Sports Injury Therapy. We brought up 3 sons and had 2 grandsons who miss him dreadfully. My life seems barren without him and we had looked forward to growing old together. It seems that 27 years teaching in the same Secondary School in East Grinstead, West Sussex caused this appalling cancer of which there is no cure. I watched a 6ft 4″ rugby, basketball and overall brilliant sportsman who was really fit, die within 8 weeks 6 days from diagnosis. Throughout he stayed relatively positive despite the intense pain he suffered. I remember how brave he was and realise now how much he hid from me and the family. The postmortem revealed how widely spread the cancer had become and I have spent much of the last year campaigning to raise funds for St Wilfrid’s Hospice Eastbourne who looked after him magnificently as well as supporting any campaigning to rid asbestos from schools, instead of hiding it. West Sussex County Council have admitted liability for Brian’s death but nothing will bring him back and give us the 25-30 possible years that we could have enjoyed together. He was a most talented sportsman and loved life. We enjoyed travelling and dining out and although I continue in his honour, it is not the same at all. The world has become quite lonely although I do have wonderful friends and family. I am however, aware that people have their own lives. To watch someone suffer and slowly die, is such a painful thing to do and in the end, I felt relieved for him, that the pain ceased and he could leave us in peace. It is only afterwards, that you feel so desolate and devastated. It never leaves me, I just put on my professional face so others don’t see how painful it all is.

"Remembering Alan Reinstein" 2016

“It’s a Cancer Battle That is Almost Impossible to Win” – Bruce’s Story

Submitted

by

: Julie, Wife (unedited)

Location: Australia

Diagnosis: Mesothelioma

1950 - 2006

It’s hard to imagine the impact on lives that minimal exposure to asbestos can have.

Bruce’s exposure was from farming activities, possibly in one major incident alone, where unknowingly he cut into asbestos sheeting (thinking it was simply cement sheet) using an angle-grinder tool.

The dust resulting from this one activity was most likely the source of his diagnosis, some 25 years later. It is a horrid cancer.

It’s a cancer battle almost impossible to win.

The sad thing is that with more education and labeling, many deaths from mesothelioma could have been avoided.

“Secondary Exposure” – Burlene's Story

Submitted by: Sheryl, Daughter (unedited)

Location: Missouri

Diagnosis: Mesothelioma

1930 - 2012

My mother had never really been sick before.

We were all surprised when her diagnosis came back as mesothelioma. Her asbestos exposure was secondary. She received chemo for 6 months and then decided to stop so that she could enjoy what life she had remaining.

I am angry because the risks associated with asbestos has been known for decades and no one does anything to ban it. I don't want to see others so through this terrible disease.

I am also concerned for my own health because I lived in the same house where some of her exposure occurred.

Our family has not been the same without her in it and I miss her voice and her joy of her faith, life and family.

“My Heart Will Forever Feel a Pain That Can Never Be Replaced” – Calvin's Story

Submitted by: Kimberly, Daughter (unedited)

Location: California

Diagnosis: Mesothelioma

1942 - 2007

Asbestos has changed my life dramatically after my dads passing.

My dad was still a young man at the age of 65 and missed out on seeing his grandkids graduate and great grandkids born.

My family feels a great sense of loss because my dad was our everything. He is no longer here to encourage us and to hug us. My heart will forever feel a pain that can never be replaced.

My dad gave all to his country and for that; he suffered.

Submitted

“My Hope” – Candace’s Story

by: Jerrie, Mother

Location: Florida

Diagnosis: Mesothelioma

Born 1975

My precious daughter has had Mesothelioma she is in remission.

Watching my daughter suffer with this illness is not an easy thing to see. S

he is in constant pain since her surgery to remove the lining off of her lung and chest wall then go thru six weeks of chemo all because of asbestos in America.

(unedited)

“Keeping His Memory Alive” – Carl’s Story

Submitted

by: Judy, Wife

Location: California

1924 - 2002

(unedited)

I have lost my best friend and confidante, my children have lost their father and best friend, and my grandchildren have missed not knowing their grandfather firsthand.

We keep his memory alive by telling family stories.

I have been an advocate for outlawing asbestos by writing letters to the local newspaper, plus contacting my Congressman and State Senators in support of legislation and funding.

“Changed Lives” – Cathy’s Story

Submitted by: Heather, Daughter (unedited)

State: Pennsylvania

Diagnosis: Mesothelioma

Born 1952

In September 2012, my mom was having shortness of breath. My dad took her to ER and her lung collapsed.

After almost 2 weeks in hospital, they did surgery to staple her lung, where she had a hole in her lung from mesothelioma. The surgeon took a biopsy and 3 weeks later, we found out she had mesothelioma.

This has changed my mom’s life and my whole family’s lives. She is no longer able to do the things she was able to do before. My mother also has no health insurance and we haven’t found any assistance to help her with her medical expenses.

This disease is nasty, and I hope they soon find cures for it.

“If I Should Fall Behind” – Charles’ Story

Submitted by: Annemarie, Daughter (unedited)

Location: Florida

Diagnosis: Pleural mesothelioma

1926 – 2011

As I sit here to try to compose this, how I miss my Dad.

My Dad was a strong and loving man. He never complained about anything. Even when he was sick and knew he was going to pass on to the other life, he was always thinking about his family.

With my Dad passing away this disease has changed my life.

My Dad had his share of illness in his lifetime, but to see an 85 year old who loved to work around the yard, or either building something with his hammer be brought down to someone who had to struggle to fight.

When he was first diagnosed he had operations to help him, went thru Chemo and then we were all told that the Chemo was not working any more. My Dad passed away 2 months ago to the date as I am writing this. We all need to find a cure. I made a promise to him that I would try to do this so no other person had to go thru what he went thru.

I know that my Dad is now at peace. I had the pleasure of being his caretaker thru it all. It was the best job that I ever had in my lifetime, to take care of someone you love.

“Our Journey with Mesothelioma” – Chip’s Story

Submitted by: Shelby, Wife (unedited)

Location: North Carolina

Diagnosis: Mesothelioma

1952 - 2012

On December 22nd 2011, Chip decided it was time to get married. We had been together nearly 4 years. After 2 weeks, he became ill, with what they thought was bronchitis. As time passed, he was no better. They did a X-ray, which showed fluid on his right lung. They drained almost 9 liters off, but there was still more that only surgery could remove. The time came for a biopsy that we dreaded. As I sat in the room with the Doctor as Chip was in recovery, he handed me the worst news ever. It was mesothelioma.

Next, we went through chemo, which did no good. Then, on June 11th 2012, it was surgery time to remove his right lung. This took 6 1/2 hours. After surgery came radiation, which we were so afraid of. I watched during radiation how it seemed to zap the life out of a once strong person.

The news about his rare form of cancer crippled him before it had a real impact on him physically. I couldn’t believe how drastically he changed in the remaining months of his life. It was heart breaking to see him affected by the mesothelioma pain and its symptoms. Here was this strong guy built like a brick house, and then this deadly cancer caught him in the middle of a great life and destroyed him. We both knew we were on this journey alone and we talked and he told me things he wanted me to do –his wishes. I had a birthday party for him on October 6th 2012, as I knew he would never see another one.

He was so happy that day like a kid at Christmas. It made me happy to see the smiles as he opened each gift and struggled just to blow out the candles.

On Oct 17th, Chip got so bad and struggling to breathe that I had to call an ambulance even though he said no. He was taken to the hospital and within 2 hours, he had to have a breathing tube. I saw him open his eyes only one time and that was when I told him I was there and he reached for my hand. He then closed his eyes like he was at peace. On October the 20th, he went in cardiac arrest.

I hope this short story helps others, knowing what happened to us. Our life changed forever. He made me promise that I would fight for him, and I will do all I can to get asbestos banned. I want everyone to know.

Call a friend or family member as often as possible even to ask how they are doing. Put off your busy schedule. It takes only a minute to call or a few minutes to visit someone that is ill.

Remember, tomorrow is never promised and you could live with regrets.

“Robbed of His Life By Asbestos” – Christopher’s Story

Submitted by: Darren, Son (unedited)

Location: Queensland, Australia

Diagnosis: Mesothelioma

1950 - 2010

I held his hand. I didn’t even know the doctor had been called into the room. It was surreal, so many trips in and out of hospital and he’d always come out. Not this time.

My dad Chris, or Smithy as known by his mates, was robbed of his life by asbestos. He won the court case but lost the battle.

He was in the industrial bakery industry, where he worked since he was 15. The heat linings were all asbestos. Never did he know, never was he warned. No protection, no care.

I miss him every day, but he was never a victim. He was a fighter and I will now put on his gloves.

In memory of all those who lost their fight.

“In

the Beginning He Had So Much Hope” – Clarence’s Story

Submitted by: Bracy, Son & Mary, Daughter-in law (unedited)

Location: Texas

Diagnosis: Mesothelioma

1912 - 1970

It completely changed the lives of our entire family. I went to work so Bracy could get out of asbestos. We ended up moving to the country to get away from the refineries. I am very proud to see that the importance of his battle has been recognized by awarding Clarence the Keep Me in Your Heart Award.

I hope through this, people will be able to see what a wonderful man he was and not just another victim of this horrible disease. In the beginning the thought of winning and being able to buy a new house and the different things he would be able to do for each of his children is what gave Clarence strength to pursue his groundbreaking asbestos case.

Unfortunately as his condition worsened, he realized he would not make it to trial. He wanted to know the trial would continue after his death since he was concerned about the welfare of his wife. In the beginning he had so much hope and worked so hard to get better. When he saw no improvement after his surgery he began to realize that he wasn’t going to make it. Within three and a half months he was dead.

Through all his suffering he never lost his faith in God. He was a very kind and gentle man. He was the very best Father and Grandfather anyone could ask for.

Because of his example I have a wonderful Husband and Father for my children.

“Miracles Occur, Why Not For Us?” – Colin’s Story

Submitted by: Lizz, Wife (unedited)

Location: Australia

Diagnosis: Mesothelioma

Born 1974

42 fit, an emergency physician more used to saving lives than being told his was going to end prematurely due to Mesothelioma.

Being a Doctor is the likely cause of his exposure- we won’t ever know for sure. It doesn’t matter.

He is well, looks well and feels well after the “shit week” following chemo has passed.

Our kids 8 & 12 and I, have grown accustomed to the 3 week cycles our lives move in. The one where Dad hibernates rarely leaving his bed. The one where we all get to return to being a “normal family.” One that isn’t living with dying and then prep week, where hospital waiting rooms and results anxiety steal precious time.

I’m the positive one. The wife the mother and wearer of Pollyanna pants. Miracles occur, why not for us? There is always hope, more time gives us greater hope. I know death, as a nurse I’ve seen plenty of it. I don’t fear it. I do fear debilitating illness. I worry about how weak he will become and how that will shape the children’s memories of him.

It’s not so easy for him, the one unlikely to see his kids graduate. We clash – positivity v pessimism. Each learning to give the others attitude, space and acceptance. We’ve agreed to not hide. To share the uncomfortable questions and truths. It’s not easy, but it is the only safeguard we have.

Largely I look for the gifts, the rays of sunlight poked into the dark umbrella we shelter under. Understanding that the bucket list is less important than a cup of tea and shared laughter in the sunshine.

“Fighting Unending Pain” – Damon’s Story

Location: Maine

Diagnosis: Mesothelioma

Born 1994

I was 18, diagnosed on October 22, 2013 with stage 4 Malignant Mesothelioma and given 3 months maximum without treatments.

I refused chemo and radiation and got my medical marijuana card. I will be 22 this year in November.

I hate the feeling of not being able to use my legs...Well here's Day 6 with no legs, hopefully they can figure out what's wrong and get me back on my feet.

“Giving Everything and Never Giving Up “ – Dan's Story

Location: Michigan

Diagnosis: Mesothelioma

1942 - 2013

March 14, 2013, changed our lives forever. It was the day my dad was diagnosed with mesothelioma. His symptoms started with pains in his right side. He went into the hospital where the doctors found fluid in his right lung. The fluid was drained and a biopsy was done on his right lung. the biopsy came back and it was Pleural Mesothelioma. My dad started treatment of Radiation and Chemotherapy. Weeks went by and he was in and out of the hospital.

My mom, my two sons and myself were by his side. In June during a chemo treatment his right hand started going numb and his arm started shaking. More tests were done…the cancer had spread to his brain. Throughout the weeks he was losing more and more weight. He was back to the E.R. many times that summer. And each time he could not wait to go back home. My dad’s wishes were to be at home and we made sure we kept his wishes. We kept my dad home and took care of him. Visiting Nurses came and then Hospice came. We never left his side and would take turns holding his hand and talking to him during those summer days and nights. The last week he could no longer eat or drink.

The pain never went away that he had in his side from the cancer and everything he was prescribed for the pain did not help very much. Sometimes the pain would be horrific for him and he could not sleep. Dan fought this battle with everything he had and never gave up.

He was a Warrior…for what he endured and for what a battle he fought. Dan passed away on July 17, 2013, peacefully with his family by his side. He will be forever missed and will be in our hearts and thoughts forever. Dan was a great son, husband, dad, and grandpa and great person. We love you and miss you. Karen and Dan Miller’s 49th wedding anniversary was June13, 2013. It was spent in the hospital and their 50th wedding anniversary would have been June 13, 2014.

We Will Love You Eternally” – Darryl’s Story

Submitted by: Dianne, Wife (unedited)

Location: Pennsylvania

Diagnosis: Mesothelioma

1965 - 2011

Asbestos has DEVASTATED our lives.

On Oct 14, 2011, I lost my best friend, my precious husband, and my soul mate, Darryl, to mesothelioma. He died in my arms after a long courageous battle with mesothelioma.

Our 14-year-old twin sons also lost the most important person in their lives.

Darryl was such a beautiful person inside and out. It was such an honor to be his wife.

He loved us all so much. He loved God. He just loved life. This has all been such a hard thing for our family to bear.

He was only 46 when he died. I don’t need to tell you all how hard that was. But I am going to continue on his fight in hopes to find a cure so people don’t have to suffer and lose those closest to them.

He always wanted to be part of the cure….so I plan on still trying to raise funds and awareness about asbestos-related diseases in hopes to find a cure.

We will love you eternally Darryl!

“Strength and Honor” – Dave’s Story

Submitted by: Linda, Wife (unedited)

Location: UK

Diagnosis: Mesothelioma

1949 - 2010

Dave and I had gone to Australia in March 2009 to see our new grandson after our son and daughter-in-law had emigrated only a few months before. We had our house on the market, as we wanted to buy a smaller property near our daughter and free up some money to buy a property in Australia.

Dave had developed a slight cough. After constant nagging from me, he went to the doctors twice, but they just dismissed it. In August, the cough had gotten so bad that he couldn’t sleep in a bed and he started to lose weight. In my heart, I had a bad feeling, but you try and block it out. We went to the doctors together this time. She sent Dave to have an Xray, and they found his lung was full of fluid, and within 6 weeks, he was diagnosed with mesothelioma. To sit there and be told by a doctor that it is terminal in front of your two children – well, you try and hold it together for them. The emotions you go through – well, I don’t think I will ever get it out of my head. Dave was devastated.

He had six chemos and he was so ill with the chemo that we lived and died in A/E. He would be so emotional all the time. I’d never seen Dave cry. It tore me apart. He would stand at the window and watch all the builders go by and just sob. He was such a strong man. Meso tore him apart. He knew we were not going to grow old together, and he knew he was not going to see all our grandchildren grow up, which devastated us both. I tried so hard to be strong for all the family, not breaking down in front of them, but meso took my man, the love of my life.

How I hate mesothelioma.

“Finding Hope with Mesothelioma” – David’s Story

Submitted by: David’s Family (unedited)

Location: Illinois

Diagnosis: Mesothelioma

1941 - 2016

In the Summer of 2011, my SuperDad, David, had difficulty breathing, a recurring cough that wouldn’t go away, rapid weight loss, fatigue and other symptoms.

Originally, he was diagnosed with an upper respiratory illness and then he became concerned that his lymphoma had returned after almost 15 years in remission.

After having fluid drained from his lungs, results indicated that he had mesothelioma. Shortly afterward he had a scope of his lung confirming that he had advanced malignant mesothelioma. We were shocked and devastated!!

My SuperDad was told he had about 4 months to live and was encouraged to get his affairs in order. In disbelief, we began planning how we would be spending our last few months with him. Doctors told us there was an invasive surgery available, but they did not believe he would qualify given his other health conditions and were concerned that available chemo treatments would damage his kidneys.

Then his lymphoma doctor connected us to specialists at University of Chicago. Afterward, his doctors cleared him for a radical pleurectomy, which he had on October 31, 2011, followed by chemotherapy. The surgeon was able to remove 90% of the tumor, and to date his tumor has

not changed. Almost 2 ½ years after diagnosis, my SuperDad is doing very well and living his life to the fullest.

My SuperDad’s experience inspired us to start Mesothelioma Heroes Foundation to help the “heroes” affected by mesothelioma by raising public awareness, providing educational information, providing support to others, and promoting funding for the “heroes” that are researching treatments and a cure. We are planning our first awareness and fundraising event for September 20, 2014.

My SuperDad was fortunate enough to find hope when he thought he had none. We want to help others find hope as well.

“Who’s Next?” – David's Story

Submitted by: Dianne, Sister (unedited)

Location: Indiana

Diagnosis: Mesothelioma

1952 - 2015

Asbestos has taken my brother away from me and his loving family. We watched him suffer and slowly die with no hope of recovery.

No one deserves such a painful, agonizing death. Every day for almost 2 years he was suffering from the pain of the tumors and/or the horrible effects of chemotherapy.

BAN ASBESTOS!!! TODAY!!!!!!

FUND RESEARCH FOR MESOTHELIOMA TREATMENTS………. PLEASE!!!!

It could be your loved one next.

“Asbestos Kept My Husband from Living the Life He Deserved” – David’s Story

Submitted by: Barbara, Wife (unedited)

Location: New Jersey

Diagnosis: Mesothelioma

1941 – 2014

My husband Dave battled Mesothelioma courageously and with dignity for almost 10 years before succumbing to the disease at age 73. We bought our retirement home shortly before he was diagnosed. We had just started our retirement, where Dave was able to spend time pursuing his passion…sailing.

We were looking forward to spending time with family and traveling. Dave fell ill, and we spent a year going from doctor to doctor before getting the Mesothelioma diagnosis. We didn’t know it then, but our lives were about to change forever.

Dave had a VATS treatment in March 2005, then an EPP (Extra Pleural Pneumonectomy) in May 2005. Dave’s lung was removed, as well as the lining of his pleura and diaphragm. Reconstruction was done, as well as chemotherapy and radiation. The surgery and recovery were brutal. We spent most of our time visiting doctors, searching for ways to manage Dave’s chronic pain.

While the surgery and treatments gave him 9 years, it was a very difficult time. We missed holidays, weddings, birthdays and vacations. We spent those 9 years battling Mesothelioma together. He rarely complained, but Mesothelioma caused us to completely alter the way we lived. This horrible disease…caused by asbestos exposure during his military service…kept my husband from living the life he deserved. Dave rarely expressed anger about Mesothelioma or asbestos. But the more I read, and the more I see that asbestos is still being used, the harder it is for me to not be angry. We must work together to eliminate asbestos…the cause of Mesothelioma.

I love Dave, and I miss him more than words can express. Asbestos and Mesothelioma took him from me, his family and his friends. How many more people have to suffer and die…how many more families have to lose someone…before changes are made?

“I was given 3-6 months to live” – David’s Story

Location: Texas

Diagnosis: Pleural Mesothelioma

Born 1962

23 YEAR SURVIVOR:

That diagnosis made us live each day to the fullest but with eye wide open. Our family trips because more precious. I work full time, we enjoy hunting and fishing on Lake Travis and usually with my son. We don’t take one day for granted, we know each day is precious.

I’m so thankful to see both of our kids graduate from high school – I thought I would never see it because I was given 3-6 months to live. Now, I will see our daughter graduating from college in 2018, 23 years later and I’m sure there is a wedding in the future for our son.

Our lives were impacted, but we kept fighting, together, as a family. We are so thankful for each day since my diagnosis in 1995. I have guilt and pain every day that I’m here because I know how hard this fight is.

I keep fighting and I’m fighting for each of us, our care givers, our families, our friends and for all of our Warriors that watch over us.

I will NEVER GIVE UP, my family needs me and I’ve got too much living yet to do!

“Mesothelioma and Me” – Debbie’s Story

Location: UK

Diagnosis: Mesothelioma

1960 - 2013

I was diagnosed with Mesothelioma in November 2006, it was a complete shock. I was given 6-9 months to live.

I wouldn’t accept this and decided that this could not be the end of my life. In 2007 I created a website. This enabled me to be intouch with others going through the same as me. I went to Harley Street and met a Dr who told me about Professor Thomas Vogl in Germany who was having some success with Mesothelioma.

I had nothing to lose and as I decided I needed to find out if this would work. In May 2008 I had my first appointment with the Prof. He told about the treatment, chemoembolisation, and that it wasn’t a cure. I went back to Germany for my second treatment and found that my meso had shrunk by 10%. After 6 treatments it had shrunk by 53%. My last treatment was in December 2008.

I have three wonderful children and felt I could not leave them. I am so pleased to be able to share my story and hopefully help others in my position.

“Loss of a Soulmate”

–

Derold’s Story

Submitted

by:

Mary Alice, Wife (unedited)

Location: Pennsylvania

Diagnosis: Mesothelioma

1939 - 2015

I am living alone for the first time in my life. I lost my soulmate of almost 54 years. I can’t help but remember that year of surgeries, chemo, radiation and his pain and sickness.

We spent most of 2014 in Philadelphia (5 hours away from our home). He was a special person who was loved by many. I knew nothing about Mesothelioma before Derold was diagnosed.

He was a contractor that came in contact with asbestos in many different places and jobs.

We need to raise awareness of this terrible cancer.

“Mesothelioma Shook Us to the Core” – Don’s Story

Submitted by: Jennifer, Daughter (unedited)

Location: Pennsylvania

Diagnosis: Mesothelioma

1956 - 2013

Because of asbestos, my hard-working, loving, generous father was taken from me on October 15, 2013 at the age of 57.

The lives of my family members have been torn apart because of a material that is still legal in the United States. The senseless loss of my father and countless others angers and confuses me.

I watched my father go through months where he could not breathe but still went to work every day suffering. His diagnosis shook us to the core. Surgery, chemotherapy, a clinical trial, and radiation were to follow. Throughout all of these challenges, Dad always kept his faith in God and did his best to see the good and beauty in every situation.

Today, I know that I have a special angel who is always with me, and I will never stop working to find a cure so that no one else has to go through the pain and devastation caused by this awful disease.

“Courage and Strength” – Donald’s Story

Submitted by: Carrie, Daughter

(unedited)

Location: Iowa

Diagnosis: Mesothelioma

1951 - 2012

It has taken our rock, our father, grandfather & my mom’s love. It has shown us what it means to fight.

I am thankful to all those in the Mesothelioma community that reached out & I hope to continue to help spread awareness in my father’s honor.

He took this head on with such courage & strength.

“Unsuspecting Heroine”

– Doreen’s Story

Submitted by: Heidi, Daughter (Unedited)

Country: Canada

Diagnosis: Mesothelioma

1931 - 2011

My father worked at Johns Manville, an asbestos factory that produced pipes and insulation from Quebec mined chrysotile. He had no idea that along with his pay-check, he was bringing home the deadly fibres on his clothes — which my mother would wash. They waited. Then in 2009 my mom developed a cough. Liquid was drained from her lung three times. She underwent surgery to inflate her lungs and glue the wall to her ribcage.

It was another year before mesothelioma was mentioned.

A death sentence. I was stunned. Felt helpless. Hadn’t we just buried my father 4 years earlier? My mother died at home. My sister and I were with her, as we were for my dad. The image of those last breaths will stay with me forever… Now my sister has fluid on her lungs, significant scarring and pleural plaque. I worry. I worry everyday. And I rage that Canada is still exporting this deadly substance.

As my mom said four days before she died, “This is a crime against humanity.”

Yes, my mom went down bravely, fighting all the way. I am so very proud of her!

“Dad’s Fight Is Now My Fight”

– Edward’s Story

Submitted by: Cindy, Daughter (Unedited)

Location: Michigan

Diagnosis: Mesothelioma

1934 – 2016

My father was diagnosed in March 2016. Until then, he was a very healthy man who I thought would be around for at least another 5-10 years.

Then, after he was diagnosed, me and my family watched him go downhill real quick. I felt so hopeless because there was nothing I could do to help him get better. When we celebrated his birthday in May we knew it would be his last.

We watched him go through so many different emotions. He lost so much weight. Then on June 12th of this year, we were all there when he took his last breath.

Dad’s fight is now my fight. I will continue to do whatever it takes to have asbestos banned here in the States.

I want to educate people on the dangers of asbestos. I want to know that my grandchildren’s generation will live in an asbestos free world!

“A Heart of God” – Elizabeth's Story

Submitted by: Kathy, Daughter (unedited)

Location: Louisiana

Diagnosis: Pleural Mesothelioma

1934 - 2008

Immeasurably. Although this story is about my mom, I also lost my brother to the same disease a year later. I had 2 brothers and 3 sisters, very close and loving.

When mom got sick, I took a leave of absence and moved in with her to spend every minute possible with her. She was my best friend, mentor, travel companion, and guidance counselor.

She was everything to me and my daughter, I spent a lot of time with her already, but when she got sick, I didn’t want to lose a single minute.

But as I felt, my other brothers and sisters felt exactly the same way, they also took leaves from work to do the same. She was our greatest teacher of life. She didn’t grow up with good circumstances, and was rejected by her mother, married my dad of 35 years until he passed of an accident, and had 5 children.

I have never known a greater person. She had a heart of God and wasn’t afraid to share it, and passed these morals down to me. I do know she is in heaven.

My brother Bruce experienced the slow agonizing death of mom, only to find out through a healthy checkup he had the disease too. He knew what he was going to be in store for…

“Mesothelioma Stole My Second Chance” – Ellen's Story

Location: Maryland

Diagnosis: Bilateral Malignant Pleural Mesothelioma

Born 1960

I continued to experience situations where I had difficulties catching my breath. I chalked it up to stress and the fact that I turned 40 in May of that year. I kept putting off going to the doctors.

However, in November I woke up one morning with swollen eyes. After talking to my doctor and telling her of the different symptoms I had been experiencing, she decided to do a complete physical. This series of exams included a CT of my abdomen.

The CT captured the base of my lung. The tech performing the CT noticed numerous nodules on the base of one of my lungs. She contacted my doctor and they made the decision to do a chest CT as well. That was the beginning of the end of my life.

At the age of 40 and after many years of a bad marriage, I made some major changes in my life. I was so looking forward to a second chance for a happy life!

The next year I was blind sided with the diagnosis of bilateral Malignant Pleural Mesothelioma and told to prepare to die.

Meso stole my second chance!

“Sleepless Nights and Tearful Days” – Emma’s Story

Location: UK

Diagnosis: Mesothelioma

Born 1973

Asbestos has turned my life upside down, after having a cough for nearly a year and repeatedly been told by my GP that I was fine I got referred for a X-ray, I'd never smoked and always been fit and well but this cough never seemed to go and started to get worse.

After the X-ray came back we were on a roller coaster of emotion, I couldn't take in what I was diagnosed with, the questions of how? When? and why? Made for sleepless nights and tearfully days...I have days where I feel brave and think to myself I won't let this beat me, followed by days where I think that I may not be around to ever be called granny.

One thing that I have learnt over the past few months is about the damage and pain asbestos causes and how scary the big picture is, that it’s everywhere and that a lot of people are unaware of how dangerous it can be…

“Faded Away” – Gary’s Story

Submitted

by

: Melinda, Daughter (unedited)

Location: Australia

Diagnosis: Mesothelioma

1948 - 2013

My father worked in a power station in his early 20’s starting the year 1968.

It took 40 years for the mesothelioma to be discovered.

This horrible cancer took his life within 7 months.

Each day he faded away in body but never in mind until close to the end. My father was a great family man.

“Fighting to Honour the Life of a Wonderful Father” – Gary’s Story

Submitted by: Cathy, Daughter (unedited)

Location: Canada

Diagnosis: Pleural Mesothelioma

1934 - 2011

My dad was unknowingly exposed to asbestos indirectly while he served in the Canadian Air Force for 23 years.

He worked in power plants, where the pipes and boilers were lined with asbestos. When his doctors started to realize that his illness was related to asbestos exposure, they asked him where and when he had been exposed. “I wasn’t”, was his response. Only after going back in his work history, and learning about those pipes and boilers, did we start to unravel this horrible legacy of his work from 20 years ago. How many unknowing victims are being exposed around the globe today? I always knew that asbestos was a terrible substance and that it caused death. I had been teaching Environmental Studies at the University level for over a decade and sometimes discussed the disastrous consequences of asbestos use. How ironic and horrible and unfathomable when I learned less than a year ago that my dad was dying from it. I still can’t believe that this happened. He was my soul mate, my hero, my most wonderful dad. He was the “Opa” to my boys.

We were robbed of his love, his wonderful embrace and his laughter and jokes. His photo sits prominently in our living room, and I pass it and glance at it every day, sometimes imagining that he is actually sitting there on the couch. I pretend he is still living, and then the tears flow over. He didn’t need to die such a painful and premature death. And now I have to live with the knowledge that my country, the one he was so proud of, and served for so many years, is killing countless other victims.

I cannot rest and allow myself to start to heal until Canada stops exporting asbestos.

“Misdiagnosed” – Gene's Story

Submitted by: Stephanie, Daughter (unedited)

Location: Louisiana

Diagnosis: Pericardial Mesothelioma

My father started feeling bad in midSeptember of 2011. He put it off as being an upper respiratory infection. The following week he went to the doctor because he wasn’t getting better. He was admitted into the hospital because his heart was in afib. The hospital ran tests and could not find anything wrong. This went on for the next 5-6 weeks.

On Sunday, November 6, 2011, he went back to the emergency room due to having difficulty breathing. From there he was admitted to Oschner’s Hospital. There he was told that the lining around his heart had thickened and needed to be removed. They told him that would fix the problem. So he had the surgery on Wednesday, November 9, 2011.

He did fine until the evening of Friday, November 11, 2011. He started having problem breathing and asked to be put on the ventilator to help him breathe better. Several hours later we get a phone call to get to the hospital as soon as we can. When we got there; he had already coded. He ended up coding a total of 5 times. The doctors told us that we had to make a decision. So we decided to take him off the machines and leave him in peace. During that horrible time we were told that the biopsy results from his surgery were in. We were told that the results were that the lining removed was cancerous but didn’t know what kind. As a family, we decided that we wanted an autopsy done to see what went wrong. My dad was in excellent shape.

He went to work the Friday before going back to the hospital on Nov. 6. Two months after he passed, we got the results of the autopsy. It read that he passed away from pericardial mesothelioma. If it weren’t for the autopsy, they would have put the cause of death as heart failure.

There was nothing wrong with his heart. My dad was full of life. He always had a smile on his face and would do anything for anybody. He was a public official here in Terrebonne Parish for 40 years. Many loved him!

“Our Family’s Rock”

– George’s Story

Submitted by: Debbie,

Location: New Jersey

Daughter (unedited)

Treatment: Some Chemotherapy

1935 - 2011

My dad started to have pain in his back in January of 2010. He was finally diagnosed in May of that year.

He went to Sloan Kettering and started chemo treatments the day his oldest granddaughter was to graduate high school. He had his treatment and then came to her graduation. He became ill the next day and three days later was diagnosed with c-diff and spent July 2010 in ICU. He recovered and came home. He had 2 more chemo treatments, but his body had such a hard time that they had to stop them. He lived another three months.

On Jan. 30, 2011, my daughter’s nineteenth birthday, he passed away. He was our family’s rock. We love and miss him every day. Love you daddy!!

“Reflection of a Life Taken”

– George’s Story

Submitted by: Donna, Wife (unedited)

Diagnosis

: Mesothelioma

Location: Colorado

How has Asbestos changed your life?: Life was taken from this man who had given his life as a hard worker. He started his apprenticeship when he was 18 or 19 as a pipefitter, a union pipefitter. So, he was exposed to this poison, pipe insulation very young. He worked in the trade all his life.

He owned his own business the last 25 yrs and was going to retire and our son was going to take over the business. Who I might say has been a pipefitter also for many years. Now, we are praying and praying he will be ok.

He is missed so much by so many people. It has been 4 yrs but seems like only yesterday that he passed away. The sorrow and hurt is still so raw. You don’t get over being together 50 years very easy. We were very young when we married.

We have 3 children, 6 grandchildren and 9 Great grandchildren with 2 more on the way. I have so many mixed emotions about all of this. I think the one I can’t get past is the way he died. It was not necessary if the law makers would have done their job many years ago.

Just knowing that so many people knew that this asbestos was a killer and they were allowed to sell it anyway is hard for me to forgive. Somehow the law has to get changed about this poison. Somehow someone has to realize how many lives are being affected and do something.

I hold them responsible and no one else. This is on their soul.

“Wanting to Fight It”

– George’s Story

Submitted by: Mary, Daughter (unedited)

Location: Texas

Diagnosis: Epithelioid Pleural Mesothelioma

Mesothelioma Awareness Day will always hold a special significance for me. On August 15, 2009, my father passed away as a result of mesothelioma. That alone would mark the day for me, but even more significant, my Dad, George, was just short of his 77th birthday (Sept. 26), the same day designated as Mesothelioma Awareness Day.

My father first started getting sick a couple of years ago. He had a constant cough and began losing weight and experiencing shortness of breath. He went to see his primary care physician and was diagnosed with pneumonia. This happened several times, and the story was always the same. He even had fluid on his lungs, and he would have a short hospital stay, and even though the fluid was tested, there was no diagnosis and he would return home. The doctors didn’t seem to have any sense of urgency to find out what was going on. I began looking on the Internet, and he had seven of the nine symptoms for mesothelioma. At that point, I insisted my father receive a biopsy to find out what was going on with the recurring fluid in his lungs.

On June 2, 2009, we received the diagnosis: epithelioid pleural mesothelioma. By the time he was diagnosed, he was already in stage 4. Despite trying chemotherapy, he passed away by August 15. The system failed my father; there was just no sense of urgency. Despite the advanced state of his mesothelioma and the toll it had already taken on his body, he immediately began talking to the doctors about treatment options. He went through this whole process wanting to fight it.

He did not give up until the very end and was willing to do anything necessary. He was definitely a warrior.

“We Had to Watch Him Deteriorate Before Our Eyes” – Gilbert’s Story

Submitted by: Rachel, Daughter

Location: Colorado

Diagnosis: Mesothelioma

1954 - 2023

One of my first memories was my dad telling me he would always be there for me no matter where I was or what I did. In August 2023, a week before he died, he apologized for not being able to keep that promise.

My father was diagnosed with mesothelioma in August 2020. The doctors gave him 6 months to live. He said he would give us longer and battled mesothelioma for three years.

For three years, he lived in pain and was unable to breath comfortably despite constantly being hooked up to an oxygen machine and taking countless pain medications. He had dreamed of retiring to enjoy his ranch and spend time with his loved ones. Instead, his retirement consisted of going to doctors appointments and hospitals.

My mom and I had to watch him deteriorate before our eyes. With every hug, it was evident mesothelioma was slowly breaking his body down. We spent hours in the hospital watching him take his chemotherapy and radiation drop by drop. We saw him sell his beloved goats because he knew he could not care or enjoy them anymore.

As his last days grew nearer and nearer, none of us could comprehend why asbestos was still being permitted in the United States. Sitting there in the hospital, we read about this deadly substance and the indisputable evidence of the harm it causes people. Yet construction workers are still being asked to handle this deadly substance knowing it is easily inhaled and will almost certainly deliver a life sentence.

Days before dying, my father looked in our eyes and said don’t let this happen to other families. It just isn’t right and can be prevented. We now spend each day of our lives with an incurable pain and an eternal resolve.

“Baby I’m Going To Die” – Glen’s Story

Submitted by: Rebecca, Wife (unedited)

Location: Arkansas

Diagnosis: Mesothelioma

1955 – 2011

Our lives changed on our 22nd anniversary, when our Pcp came to Glen’s hospital room and told him he had Mesothelioma from exposure to Asbestos and there was no cure and he was going to die. Doctors gave him 6 months.

After he said what he needed to say to Glen, Glen turned to me and with big tears in his eyes he said “BABY I’M GOING TO DIE”. Glen left me with 7 grown kids and 23 grandchildren. They miss their Dad and Papa every day and no amount of money can replace the void in their hearts or mine!!

Two weeks after we laid Glen to rest, his ex-wife was diagnosed with the same thing from doing his laundry. There is no sense to any of this. I am disabled and Glen was my caregiver and soul mate, why would anyone knowingly put another human at risk for the greed of money.

For God’s sake Congress please BAN ASBESTOS from our country!!

My county alone has lost over 200 people from this MANMADE Killer.

“Asbestos Has Robbed Us”

– Glenn’s

Story

Submitted by: Shelley, Granddaughter (unedited)

Location: Montana

Diagnosis: Asbestosis

1903 - 1961

In Andrew Schneider’s November 18, 1999 article in the Seattle Post-Intelligencer, he writes that Glenn Taylor was the first Zonolite miner to be diagnosed with asbestosis. After working for Zonolite for 19 years, and being mistakenly diagnosed with TB, in February of 1959, doctors at the state tuberculosis hospital realized they were wrong. Glenn Taylor, my grandfather, was suffering from asbestosis. He lost his battle with asbestosis in 1961, a month after turning 58 years old. That day was his youngest daughter’s 9th birthday. My grandmother, Gladys Taylor, was left to raise the children that remained at home while mourning his loss.

Much like many others who have made their lives in Libby, asbestos has robbed us. In some cases it is quality of life, leaving many to spend the rest of their days in the company of oxygen tanks and inhalers. Others simply die. Except it’s not simple, or fast, or pretty. It’s slow and excruciating.

Asbestos has left me with an eerie sense of disbelief and sadness. Libby is my family’s home and has been such a part of who I am throughout my entire life. I am a proud Libby Logger, a logger’s daughter, and the granddaughter of a man I never had the privilege to meet. I do know him though, through the stories my aunt tells, the laughter of my dad, and the sheer orneriness of all the Taylor kids.

We are a proud bunch and proud is exactly what I believe my Grandpa Glenn would be today if only he could have lived to know us.

“A Life Forever Changed”

– Gregory’s Story

Location: Colorado

Diagnosis: Mesothelioma

1952 - 2013

It took my husband, companion and best friend away from me.

My life has been changed forever.

And every time I see another persons life gone it breaks my heart and makes me angry.

“Moral Right to Seek Fair Compensation” – Guy’s Story

Submitted by: William, Son (unedited)

Location: Wisconsin

Diagnosis: Mesothelioma

1921 - 2004

In 2004, I lost my Father, Lt. Colonel Guy R. Roberts to stage 4 mesothelioma. He was very ill for many years and suffered a terrible death. Extraordinary amounts of bloody fluid were taken from his lungs, 2700 milliliters to be exact.

A decorated WW2 fighter pilot, he flew 223 combat missions and worked 30 years to provide a clean, safe home environment for his family. After installing Zonolite Attic Insulation in the family home around 1970 for whatever reason, he left two bags of asbestos insulation behind. Zonolite was made by specialty chemical maker, WR Grace and mined in Libby, Montana for several years. This “miracle mineral” has killed hundreds in the town of Libby and to this day, remains a superfund site.

After finding Zonolite in the attic, garage and cedar closet, I filed a personal injury/wrongful death lawsuit with the Chicago law firm of Cooney & Conway. My claim will be filed against the WR Grace bankruptcy trust as soon as it's established. The big question is when? Packaging copy on the bag clearly states that Zonolite Attic Insulation is non-irritating. This statement was false and misleading and the executives at WR Grace knew very well the product was dangerous. Internal documents obtained through various sources have helped victims obtain full compensation from the negligence of others.

I lost my Father/Mother and childhood home to the profits of WR Grace. I moved out in 2009 because of all the asbestos in it. I've had cancer twice and a tumor on my colon in 1989. An 8 mm nodule on my lung is currently being monitored. I was exposed to asbestos for many years and this may have played a part in my many health concerns. The stress of the lawsuit has given me type 2 diabetes and fueled my diagnosed chronic major depression.

WR Grace has been in chapter 11/bankruptcy protection since 2001. This is 13 years with no end in sight. I have watched their stock price go from $20 a share to the current price of $95 with a forecast of $105 according to Jim Cramer on MSNBC. The company recently purchased a division of Dow chemical for $500 million dollars. These trusts pay pennies on the dollar and continue to get filthy rich as plaintiffs like myself, have not seen a dime. I have every moral and divine right to seek fair compensation from WR Grace. I hope my comments are of value.

Update: WR Grace came out of bankruptcy in 2014 and established a trust valued at $4 billion dollars. My claim was approved as a mesothelioma claim and I have been offered $46,000 before attorney fees. My share will come to about $14,000. Dis-GRACE-ful!

“The Value of My Life in Dollars and Tears” – Heather’s Story

Location: Minnesota

Diagnosis: Mesothelioma

Born 1969

It’s’ been 6 years since I first shared my story with ADAO and started my mission of advocacy and awareness.

I was diagnosed 3 1/2 months after the birth of my first and only child. Needless to say, what was supposed to be a joyous time in our lives was now overshadowed with a mesothelioma diagnosis. I was exposed to asbestos as a child through my father’s work clothes; little did we know that 30 years later I would be in the fight for my life because of this dust.

In 2016, I celebrated 10 years as a mesothelioma survivor. I’ve worked for the last few years to share my story of hope with the world and to bring more awareness to, this devastating disease. My life was changed forever that day and now; I’m very thankful for all the research done to help save lives and find a cure. I am currently cancer free, and will remain so.

Together with Linda, and ADAO, we will make a difference. Together we are stronger.

Together we will change the world, one story at a time.

“Mesothelioma Does Not Discriminate” – Heather’s Story

Location: California

Diagnosis: Mesothelioma

1968 - 2017

On February 23, 2010, my life was forever changed. I was diagnosed with mesothelioma. My doctor told me there was no cure and I was given 9-18 months to live. The words will forever be etched in my memory. After many days of feeling helpless, hopeless and disbelief, I decided to take control of this deadly disease. It was not going to control me. I was not going down without a fight. I researched every ounce of info I could find in relation to treatment options. I sought out two opinions and decided on having an EPP (extra pleural pneumonectomy) with Dr. David Sugarbaker at Brigham Women's Hospital in Boston. After my initial orientation in Boston, a woman pulled me aside and said “Honey, where on earth did you get this disease? I saw you walk in and kept expecting an older family member of yours to be joining you who was the patient. You are too young to have this awful disease.” I was 41 at the time. The sad reality is that whether you’re in your 30's, 40's or 70's, we are all too young to be fighting this deadly disease which we know can be prevented. I spent 6 weeks in Boston after my surgery. It took me away from my children, my family, my job, my everyday life. I have had two recurrences since then with two chest wall resections. Most recently I underwent 5 rounds of chemo. I have tumors now that, because of their location, I am not a candidate for surgery. I currently am on a clinical trial and my disease status is stable. I have fought long and hard to rid this disease from my body. I have had many days where it has taken away my strength and energy. I had an amazing career as a registered nurse which I loved. Because of the physical demands that go along with being an RN, I am no longer able to work. Not only does this disease affect you physically, but the psychological and emotional toll can be equally as hard. The feelings of fear and anxiety can at times be paralyzing. The “what ifs” can be all consuming. I have watched this disease emotionally break down my husband, leaving him feeling helpless and defeated. This disease does not discriminate. It is mean and cruel and leaves a path of destruction wherever it rears its ugly head.

“I Lost My Best Friend and the Love of My Life” – Hermann’s Story

Submitted by: Irene, Wife (unedited)

Location: Wisconsin

Diagnosis: Mesothelioma

1939 - 2008

Hermann, my husband of 47 years started complaining of a severe back ache late in February 2007. At the beginning of July 2007 (four months after our first ER visit and after numerous and various x-rays and testing), the 4th biopsy confirmed that the pain was caused by sarcomatoid pleural mesothelioma, stage 4. He started chemo treatments with Alimta and Carboplatin. This chemo combo regime seems to help for a while, but pain management was always the big issue. He had fluid buildup, but was drained only once. Nor did he have any breathing problems until the very end. He did have a problem with excessive eye tearing and very low blood counts and still the relentless intense pain. In January 2008, chemo continued and radiation treatments began. And for pain control, he had a pump implanted (actual term is “Intrathecal Drug Delivery”) inserted that would deliver paid meds directly to the tumor site.

However by mid-February 2008, Hermann was getting very weak, unsteady on his feet, and sleeping a lot – mostly in a recliner (the only place that he was comfortable enough do to so). His decline from there was rapid. He then developed pneumonia and by this time anyone could see that he was just worn out and giving up. In a way I couldn’t blame him. He fought as hard as he could, endured the endless rounds of testing and treatments and just wasn’t getting anywhere. Hospice was brought in; they were a blessing and a great help and support. Hermann died on March 5, 2008 – one year to the date from when this began with the first visit to an ER. He was 68 years old and had been very healthy before. I lost my best friend and the love of my life.

“Asbestos Took Our Breath Away!” – Hilton’s Story

Submitted by: Sheena, Daughter (unedited)

Location: Louisiana

Diagnosis: Asbestosis

1939 - 2018

Asbestos took our breath away! My dad, Hilton Manuel Sr., took pride in his work ethic and appearance. Dropping out of school to go into the workforce, he found employment at Morton Salt in Weeks Island, Louisiana.

During his days of retirement, he was diagnosed with asbestosis but I remember the first day I realized something was wrong. As we laughed at one of his crazy jokes getting out of the car, I realized that his breath was heavy and labored.

We only took a few steps from the car to the front door of the building. My life changing moment remains to be the day my dad took his last breath.

For my breath is easy and light and so is his as he sleeps peacefully with his Heavenly Father.

“Dirty Laundry that Kills” – Iva’s Story

Submitted by: Her Grandsons

Location: Illinois

Diagnosis: Pleural Mesothelioma

1922 - 2012

In 2012 our grandmother died of mesothelioma, a disease we had only ever heard referenced in late night TV commercials. At that time neither of us realized that mesothelioma had a direct cause, asbestos. Iva was 90 years old when she passed, it happened quite suddenly. We weren’t shocked at the time, rather the shock came when we learned just how she got mesothelioma. Our grandfather worked as a pipe insulator at the Shell Oil Refinery on the edge of the small town of Roxana, Illinois. Everyday he went to work and wrapped pipes in asbestos. When he came home our grandmother would take his dirty work cover-alls and shake them out in an attempt to keep her washing machine clean of this ‘dirt’ and ‘dust’. It was this service that eventually ended her life. When we learned of this story we decided we had to do something.

In 2016 we decided to devote the next two years of our lives to learning about asbestos and recording our experience in order to make a featurelength documentary film. That’s when “Dirty Laundry” was born. We were confused about what asbestos was and felt a strong sense of injustice with our grandmother’s story. With these thoughts in our heads we set off across the US by bicycle, meeting up with people who had been affected by asbestos in order to understand the problem better. We met with doctors, advocates and families of victims.

So how has asbestos changed our lives? It’s taken a family member we loved, but it’s also given us a new family of people who are fighting for the same goal – to end this problem once and for all so we don’t lose more people like Iva.

– Conor & Zack @asbestosmovie

“Cheated of his Golden Years” – Jack's Story

Submitted by: Mike, Son (unedited)

Location: Ohio

Diagnosis: Mesothelioma

1935 - 2011

My father was a young 75, in better shape than I.

He worked hard all his life, honest, loving, caring father, husband, pawpaw, brother and friend. His older brother is in the attached picture, he is 10 years older than my father and he just turned 89 this year.

I am frustrated because he was a hard-working man to support his family, he made a decent wage but not the MILLIONS that the companies made off of asbestos. I feel cheated of his golden years because of asbestos. He had plenty more to share and teach his grandchildren and family. He was never sick until he became diagnosed with Mesothelioma and was never in a hospital until then.

We need to BAN asbestos! Too many innocent dying!

“Last Breath” – James’ Story

Submitted by: Rachel, Granddaughter (unedited)

State: Missouri

Diagnosis: Mesothelioma

1924 - 1991

Asbestos changed our lives when it took my grandfather away from me when I was 10 and he was only 61 years old.

We were very close and while I was young, I have many vivid and fond memories of us together.

The last year of his life I watched him get sicker and sicker each month until he was confined to a Lazyboy chair.

He took his last breath on Thanksgiving Day with all of us there. I remember my grandfather laying there “sleeping” all morning and then taking his last breath. He was an amazing grandfather and I always wished I had more years with him.

Later on I would be diagnosed with cancer and an ongoing challenging medical journey and he always was an inspiration.

“My Life Changed Overnight” – James’ Story

Submitted by: Sherry, Wife (unedited)

Location: Arizona

Diagnosis: Mesothelioma

1945 - 2011

My life changed overnight when my husband of 35 years was diagnosed with mesothelioma. Jim had a lifetime of good health and was a Black Belt martial artist. He retired as a Major from the U.S. Marine Corps after serving 30 years. He spoke three languages fluently and served in the Vietnam War and Desert Storm. He was exposed to combat risks, but mesothelioma was one risk we could not have anticipated.

He suffered through an extra pleural pneumonectomy, peritoneal surgery, chemotherapy and radiation. I thought if anyone could beat it, he could. He tried so hard to stay, but in the end, he left as he had lived, with courage, grace, and humor.

I have lost the most important person in my life from a long-known carcinogenic killer and it is still hard for me to reconcile that exposure most probably came during a career he loved so much.

Even after 5 years, I still think about him every day and can’t imagine that we won’t grow old together. The long years ahead alone look bleak to me still. I’m fortunate to have very good friends who care about me, but my best friend and life companion left me much too soon.

“A Thief in the Night” – James’ Story

Submitted by: Kimberly, Granddaughter (unedited)

Location: Tennessee

Diagnosis: Mesothelioma

1925 - 2005

My Grandfather meant so much to so many & carried several nicknames. To his family he was “Pete”, to his buddies in his army days he was “Camel”, to his coworkers & friends he was “Doc”, to his brothers & sisters in Christ at church he was “The Greeter”, but to me he was the Best Grandfather & one of finest men to have ever walked.

The day that changed my world forever is the day that Mesothelioma devastatingly came in swiftly like a thief in the night & captured his life.

Words can not tell of the sorrow & pain that is left in the place where he once stood but one thing I can express is that, missed & loved deeply, my Greatest Hero is now the Reflection of an Angel.

Though Mesothelioma may have stolen him from this life, it will never take him from my heart. Always in his loving memory!

“He Always Had Time to Listen” – James’ Story

Submitted by: Mary Lynne, Sister-in-law (unedited)

Location: Texas

Diagnosis: Mesothelioma

1933 - 2011

Asbestos took away another of my love ones and it still hurts!

Jim was a wonderful man loved by everyone for his caring and generous nature. He was a Deacon in the Catholic Church, a Civil Engineer, Retired Colonel in the Army and Attorney. Most of all he was a loving husband and father of five.

No matter how busy he was he always had time to listen to and help others. He was my Brotherin-Law but I loved him as a Brother. From the time I was a little girl, he always had time for me.

By the time the Doctors figured out what was wrong with him he only had one very painful month to live.

He will always be loved and missed!

“My History of Mesothelioma” – James’

Story

Location: Arizona

Diagnosis: Mesothelioma

Born 1961

My History of Mesothelioma. I had cancer of a different type in 2011. During the followup CT Scans, my oncologist started seeing growths in my abdomen. After several scans he decided to get a biopsy. So I went in for a CT Guided biopsy in mid July of 2011. When that didn’t work I had to do a arthroscopic biopsy in August of that year. Finally getting a good sample I was told by my oncologist that I have Peritoneal Mesothelioma Epithelioid. I ended up going to CTCA (Cancer Treatment Centers of America) to have the HIPEC surgery. On 10/14 I went in for the surgery and 10.5 hours later I was sent to recover for 24 hours. After 17 days in recovery I was finally released. After some more recovery I went in for 30 session of Radiation Therapy. Again after some down time there was 6 session of chemotherapy in store for me. Starting in September of 2017 I was having blood test called SMRP that showed increases in the marker for Mesothelioma. Then I went in for a PET SCAN but it didn’t react to the scan. So about 2 months later I had a MRI. This MRI showed 5 different lesion in my abdomen.

1. 6.5 cm in diameter in the center of the liver by the porta hepatis

2. 3.5 cm in diameter on the dome of the liver near the lung base

3. 3.2 cm on the left heptic lobe of the liver

4. 1.3 cm x 1.2 cm on the anterior pelvis

5. 3.8 cm x 1.5 cm on the right seminal vesicle & anterior of the rectum

I went through 4 session of Carboplatin, Premetrexed (alimpta) plus Bevacizumad (avastin) with Neulasta Patch. Followed by maintenance of Premetrexed (alimpta) plus Bevacizumad (avastin). Now in October lesion 1, 2 and 3 will be (hopefully) destroyed by Cryo-Surgery. My life has been a struggle and to say I am OK is a stretch of the imagination just to say, I am alive is a miracle.

Images of the Asbestos Ghost – Jan’s Story

Submitted by: Jan Jr., Son, (unedited)

Location: Netherlands

Diagnosis: Mesothelioma

The day my father was convicted to death by mesothelioma I saw a big and proud man blown away. Sitting mentally (and very soon also physical) broken asking, “why ?” I’ll never forget that image.

He started working as a shipbuilder on a worldwide known wharf in the Netherlands when he was 14 years old, giving the best years of his life until he left the wharf when he was 30. In the mean time I was born, of course not knowing that my father has already being convicted to death by asbestos. In 1993 he had some ‘small coughing problems’ … It seemed to be the ‘pleural plaques’ on his lung-tissue. Years passed with very few physical problems. But the worst was to come in 2008. Pains in the peritoneal area, in short time being unable to eat, mentally broken, angry to almost everyone (also my caring mother!) and in the meantime the fast growing 5 tumors in the stomach area.

He lost about 60 kgs of bodyweight in only 5 months. The missing of being able to see the growing up of his only two grandchildren, my two daughters, did hurt him so much that he cried at the moments he could meet them – even as sick as he felt. That image I’ll also never forget. He was angry for NOT BEING TOLD ABOUT THE DANGERS OF ASBESTOS. The information about that was known for sure. But, it wasn’t shared with the workers.

One of them was my father.

I connected myself with the asbestos victims by now being a part of the Comité Asbestslachtoffers in the Netherlands. I see it as my task to tell the victims and their heirs about their legal rights.

“My Life Battling Mesothelioma” – Jan’s Story

Location: UK

Diagnosis: Mesothelioma

1960 - 2014

When I was diagnosed in 04 it was difficult to find much information on the internet apart from solicitors advertising claims, so I felt very much alone at fighting this terrible cancer.

I thought that my surgeon had done a marvellous job removing the initial tumour and that by following with chemo the meso wouldn’t return, but 2 years later I was back on the chemo and once again facing the greatest fight for my life. The chemo didn’t work for long the second time and by then more info was becoming available. I took a chance and visited the States for cryoablation on my lung in August and again in November 08, the Doctor advised that surgery would be the only thing to save my life so on my return I contacted the surgeon he recommended and having past the requirements I had my pleura, pericardium and diaphragm removed. Surgery was a big decision to make as the risks of survival were still not that high, there again being given approx 3 – 6 months I thought surgery offered better odds.

Living with a terminal cancer is swings and roundabouts, when you are in remission you are always worried it will come back, when you have it back you are always worried it won’t go back into remission. Mentally it can be very draining and treatments are very demanding on both you and your family. It isn’t easy watching someone you love suffer from the side effects of chemo or recovery from major surgery.

Overall, I have been lucky because I have managed to outlive the average timeline and to have a relatively normal life, but it leaves scars not only on my life but that of my husband. Without him I doubt I would have fought so hard to stay alive and push myself through the treatments. He never wants to make the decision on what I should do but stands by whatever decision I make, he is the one that is left to worry about things as I charge

ahead and do them. I would say this journey affects everyone close to you but in different ways.

I have had another 2 years in remission but the meso keeps coming back!

Now I am fighting again, having just had radiotherapy on a small seeding patch I am back looking for treatment to hold back this aggressive cancer.

I started a blog and website in 2008 (www.jansjourney.co.uk) to help others and I find that helps me keep battling this, as well as carrying on with my job and trying to live a normal life with my husband and dogs.

"Honoring Senator Barbara Boxer" 2017

“I

Will Never Be the Same Again” – Janelle's Story

Location: Indiana

Diagnosis: Pleural Mesothelioma

1976 - 2013

I was a 31-year-old wife with a 4-year-old son when I was diagnosed with Pleural Mesothelioma.

It started with trouble breathing, pain around my left rib and a constant cough. It was a matter of weeks and I went from being healthy to fighting for my life. I was told I would not survive Mesothelioma, that there was no cure. I decided to have an EPP and I was so thankful it was a success!

Since surgery, it has been a long road to recovery. I have come a long way, but I know I will never be the same again.

I had a hard time getting off the pain medications and I suffered with severe depression.

Some days, I could deal with the new me and other days, it was harder. I just try to continue to improve my life every day. In 2011, I was faced with the reality that the cancer had metastasized into my abdominal cavity. I had debulking surgery with HIPEC. The surgery went well. However, I then learned I was dealing with Restricted Lung disease in my only lung. I now use a BiPAP AVAPS to sleep at night.

There has been a lot of hard days, but the ones in between are really great!

“What Ate My Mum” – Janet’s Story

Submitted by: Marcus, Son (unedited)

Location: Australia

Diagnosis: Mesothelioma

1937 - 2006

I made a documentary to help answer some questions.

A 1-min teaser can be seen at www.whatatemymum.com.

“My

Life Has Changed 100%” – Janine's Story

Location: Ohio

Diagnosis: Mesothelioma

When I was told I had Mesothelioma, I was in disbelief. I never thought that just washing my husband’s work clothes after he had cut asbestos building panels at work, would cause me to contract Meso.

He cut the boards in the 70’s and early 80’s, and at that time, we had no idea how dangerous exposure to asbestos was. I was an innocent victim and feel my life has been robbed.

I had lung surgery in Feb. of 2010 but at that time the surgeon did not remove the pleural lining, just a tumor. I feel if he had remove the lining or the lung, my chances of survival would be greater. I have 3 new grandbabies that I so want to see grow up, but unless some other treatment can be discovered, it is doubtful that will happen.

I’ve had to quit working and go on disability and my life has changed 100%.

“It

Won’t Stop Until They Are Jailed for Murder” – Jean’s Story

Submitted by: Ann, Daughter (unedited)

Location: Pennsylvania 1935 - 2008

My beautiful mother, age 71, totally healthy, a tennis player, walked 3 miles per day, a health fanatic, was gone in 10 months from a disease we had never heard of. She was exposed to asbestos 40 years earlier by shaking and washing my father’s work clothes. CT scans and X-rays were all negative. Biopsy showed what was causing her lung to fill.

Being a RN, I thought we had an advantage to fight this, with me caring for her. I took a leave from work and began the battle. I never felt so alone in my life. I was fighting the battle alone. The doctors didn’t offer many options or hope, just comfort.

It’s too hard to accept, because of the injustice of her death and all the others who have passed or are still fighting. I lost my Mum, my best friend, my traveling partner, the person who knew me best. I now tell my story to anyone I can. I wear some of my Mum’s cremated ashes in a necklace and show it when I talk of her death. It makes such an impact on people, which is what we need to stop this madness.

Fines imposed on the manufacturers of these products do nothing.

It won’t stop until they are jailed for murder.

“Constant Pain” –

Jesse’s Story

Location: California, US

Diagnosis: Mesothelioma

Born 1980

It made me think, am I ever gonna live long enough to see my kids graduate high school? Will I walk my daughter down her wedding aisle?

That has put me in a stressed depression for years. I’m in constant pain but I still push forward to wrestle with my kids and help out with my kids’ sports.

I lost my job cause of my pain so I was unable to work. It also made me closer to my family who support me and love me.

“Being a Meso Warrior Takes a Lot of Faith and Hope”

– Jill’s Story

Location: Texas Diagnosis: Mesothelioma

1941 - 2014

Mr. Meso has been with me for 18 years. He was really with me long before he let me know .I’ve had 3 other cancers and with each one I was told I was terminal. I guess because I’m so stubborn and independent, I fought my way thru all the radiation and chemo with God’s guidance.

My cancer adventure started in 1963. Since that time I have had numerous x-rays, c-scans, PET scans, operations, etc. I volunteer for MDAnderson and Bloc Cancer Center as a phone volunteer. I’ve met many people by phone that have become friends. Hundreds of Meso victims have passed on, but I remain connected to their families.

Being a Meso warrior takes a lot of faith and hope. Waking up every morning I deal with all the side effects that the radiation and chemo have done to my body. My husband is always positive and stands beside me. I have children, grandchildren, that I want to do things with. I can’t walk well now due to another tumor growing, that was caused by the radiation.

There have been so many decisions that had to be made during my life with Mr. Meso. Like other Meso warriors, I have a Plan A, B, and C. My “healthy” friends have vacation plans, cruises lined up, off to their grandchildren’s events and fun things to do. My “plans” are on the calendar for doctor visits and procedures.

I have no choice but to accept this. My soul is sad, but my spirit thrives on bearing the fruit of “love, joy, and peace, God has blessed me and he will continue to lead the way.

“9 Months to Live” – Jim’s Story

Submitted by: Moira, Wife (unedited)

Location: Australia

Diagnosis: Malignant Pleural Mesothelioma

1940 - 2009

Jim, my husband and soul mate, age 69, was still working and was fit and healthy. He loved his work. He felt a bit tired, so he went to the doctor for a check up – and following tests revealed that he had malignant pleural mesothelioma.

We had never heard of it – couldn’t even pronounce the words – but that changed fast. The next 15 months were spent trying to find a cure. We couldn’t believe that this very healthy man had been given 9 months to live.

We went to Perth in WA for radiotherapy treatment. This helped – gave us 6 extra months.

Now, as long as I don’t think about it, I’m fine. When I do think about it, the tears start – just putting this down has started them off again.

Grief – I don’t know what stage I’m at – but I am grieving.

“An Enormous Shock” – Arthur James (AKA Jim)’s Story

Submitted by: Jennifer,

Location: Australia

Daughter (unedited)

Diagnosis: Mesothelioma

1939 - 2015

My father was diagnosed with mesothelioma early January 2015. It came as a complete shock to everyone. Dad had hardly ever been sick apart from the very occasional bad cold. It turns out my father worked as a motor mechanic in the 1950’s only for about 4 years before becoming an accountant for the rest of his career.

From that day of diagnosis

my father was told he had a limited life span and to “get his affairs in order”. It was very distressing for my parents and family to hear that. The months after his diagnosis in January he was constantly in severe pain from the cancer which was already advanced at time of diagnosis and had spread from the right lung to all over the chest, back and ribs on the right side. It took many months to get the severe pain under control, he couldn’t even sleep in the bed at home, he slept in a recliner chair due to the pain of lying down.

My father and mother’s life, as mine, for the whole of 2015 until his passing became a constant blur of hospital appointments, numerous emergency hospital trips, lengthy hospital stays, treatments, research, and discussions about his condition. Due to the pain and fatigue, he became a prisoner in his own home when he wasn’t at the hospital. He completely lost all quality of life. My parents had booked numerous travel adventures this year and social activities. All had to be cancelled.

We hoped and prayed for a miracle cure but that wasn’t to be. My father withstood treatment including a pleurodesis surgery, chemo, a blinded clinical trial (we think he sadly received the placebo), and a new immunotherapy drug. He also suffered many other problems as a result of

his disease and had multiple blood transfusions, heart problems due to the cancer, collapsed veins, and kidney issues amongst other things. The last 5 weeks he deteriorated very quickly and required oxygen. We still hoped for a miracle cure. My father fought the most courageous battle against this disease. He had the most aggressive cell type so the odds were always against him. Still he battled on bravely. Unfortunately he became weaker and weaker in August and September. We were told that he would pass away multiple times in September. It was still an enormous shock when he finally did on 13th September.

You still hope against hope that it won’t happen. At the same time it is absolute torture seeing the person your mother, family and yourself loves so much suffering so badly that you find yourself wanting peace for them, and to be ridden of such suffering.

Mesothelioma robbed me of my Dad and robbed him of so many years ahead of him if it wasn’t for this insidious disease. My and my brother’s father was also a husband, grandfather, father-in-law, uncle, and friend. In the many months suffering so badly with this disease, my father was surrounded by family, at the end often staying with him overnight in his hospital room.

We pray my brave father is now at peace, free of suffering and in Heaven.

“Full of Impotent Rage”

– Jo’s Story

Location: New York

Diagnosis: Stage 4 Pleural Mesothelioma

1948 - 2012

I have lived on this planet for 63 years. I’ve faced a number of serious health issues in my life. The battle I am facing now is epic. Why? I can’t answer that. I don’t know how I was exposed to asbestos. I have no idea. I was married for 30 years, raised two monumentally wonderful children whom I am ever so proud of and grateful for. I was an active person; volunteering, traveling with my family, I had a career, I was an outdoorsy and active person; skiing, kayaking, bike riding, hiking, camping, traveling. Today it is difficult to walk to my mailbox. Right now my daughter, at the age of 28, lives with me as my caregiver. She is a godsend but I have so much guilt for it. She should be living her own life not acting as care giver for her mother. In the fall of 2010 I was on a 25-mile bike trip with my girlfriends, kayaking in Cape Cod Bay and skiing on the first winter snows.

Recently I went grocery shopping with my daughter and the activity level of that caused me vomit when I got home.

I am retired now and I thought that might be lovely because I have a bucket list. There are so many places I’ve never seen and and always wanted to go to: Patagonia, New Zealand, Alaska, Bhutan, St. Petersburg, Crete… A few weeks ago I had to travel to Minnesota so my sister and I clear out my mother’s apartment and I was barely able to make it through the 5 days we were there and my sister did 85% of what needed to be done.

Did anyone ever think it could come to this? I am full of impotent rage with our government, big business, Canada, and the willful greed and the

indifference to human life. I AM worth more then a dime or the thousands that end up lining the pockets of those unconscionable people who live and breathe money.

Life is worth more than that. Today my chances at life are waning. My only consolation in all of this is that I know I have time to tell my children all they have ever meant to me and all they ever will.

Life is precious and I didn’t deserve this, neither did any of the other thousands who have become “warriors” in this fight. I am ever so grateful for those who tirelessly carry the torch for all of us in the fight to end this blight.

“Face Full of Asbestos”

– Joe's Story

Submitted by: Justine, Daughter (unedited)

Location: Arizona

Diagnosis: Mesothelioma

1960 - 2015

My dad was diagnosed with cancer in 2015. He worked for Empire/Caterpillar on diesel generators. He loved his job so much. We were very close. It was a mass in his lung, which turned into brain tumors. I came home one day & my dad looked at me as if he didn’t have a clue who I was..it was devastating.

I called my aunt because it was just him & me where we lived, and she drove down from Idaho to help me get him to the hospital because I had no idea what was going on with him. He always told me that when he was younger he was working a job and he wore a gas mask & the hose came off & he got a face full of asbestos.

He always said that would be how he’d go..I miss him very much. I thought that when he was headed to the hospital that everything was going to be okay..but it only got worse. My aunt was asking me how much money was left of his 401k..and I told her that it was none of my business! After that she convinced my dad that I was just after his money & he believed her because he wasn’t in his right frame of mind. My heart hurts because she made it to where the last days of his life were spent without his daughter & best friend. I will never forgive her for that.

Rest in peace Joseph Michael LaBarber til we meet again.

“My Dad Did Not Deserve to Die the Way He Did” –

Joe’s Story

Submitted by: Christie, Daughter (unedited)

State: Nevada

Diagnosis: Mesothelioma

1954 - 2016

I lost my Dad two weeks ago to Mesothelioma. He was a plumber and a fireman for most of his life. Five years ago when he was diagnosed he was fortunate to be able to go to MD Anderson in Houston where they were able to remove his lung and after recovery he returned to Mesquite Nevada where he lived. For the next five years all his scans would come up clear of cancer. We are all so very grateful for the extra time we had together.

In November 2015 my Dad started to have severe back pain. Unexperienced with Mesothelioma and because of the negligence of the Nevada health care system, the return of my Dad's Mesothelioma was overlooked. I watched my Dad suffer until finally on December 31st he was told his Mesothelioma had returned. I watched Doctors and even his Oncologist scramble around trying to figure out how they would treat him. His last two months of life did not need to be so unbearable.

My Dad did not deserve to die the way he did. To learn that asbestos is still being used in the United States breaks my heart. Next month I will go in and get my lungs checked as I remember going to work with my Dad and standing next to him while he cut into pipes and insulation and tore down walls in old houses. I want more attention brought to this disease. I want more doctors to understand asbestos related illnesses.

The day before my Dad passed away his Oncologist told us he could “fix” the issue of the cancer causing fluid to build up in his chest and abdomen.

The next day an ICU doctor said they would make him comfortable and he would “go to sleep”. My Dad's heart gave out 20 minutes after in front of his three kids and wife. I know he is not in pain anymore. My Dad worked hard for his family which eventually took his life. My Dad did not deserve this.

Nobody deserves this. I would like to do my part for the cause but I don't know where to start. I want these companies to stop using this poison in their products.

Even if my story is not posted, please let me know how I can help fight against this disease and fight against the use of asbestos. Thank you.

“His Death Was Preventable”

– Joe’s Story

Submitted by: Teba, Wife (unedited)

Location: Vermont

Diagnosis: Mesothelioma

1966 - 2014

My husband passed away at the young age of 47 from mesothelioma, something we had never heard of until his diagnosis. Joe spent 3 long years trying to overcome but ultimately his body couldn’t hold out any longer.

My anger continues to this day, knowing that his death was preventable. Our four children will never again be able to get fatherly advice, hear Joe’s booming laugh, or share the experience of having him walk them down the aisle at their wedding.

Joe’s death and our loss of a great man all because people wanted to make money. Shameful.

“Mesothelioma Robbed Us”

– Joe’s Story

Submitted by: Vickie, Wife

(unedited)

Country: Australia

Diagnosis: Mesothelioma

1948 - 2012

Mesothelioma robbed Joe and myself of growing old together at a stage in our lives when we should’ve been taking holidays, relaxing, and enjoying each other’s company.

Instead, our last months together were hellish…chemo made him very sick and did nothing but hold the tumor.

Now, each day I have to go on without him…missing him, not being able to share laughs and tears with him.

“Living the Nightmare of Mesothelioma” – John's Story

Location: Alabama

Diagnosis: Mesothelioma

1946 - 2013

I learned that I had mesothelioma on August 10, 2012. I had always been in excellent shape and taken care of myself. In fact, I had just had a physical in May and the doctor told me I was in excellent health. My diagnosis has changed everything about my future life.

On July 5, 2010, I had remarried the girl I let get away in 1972 and we had our lives planned out with many years of marriage and fun ahead of us. Suddenly, I find out my life could be over in a year, my retirement turned into a leave from my job, and I now spend endless hours going to doctor appointments and treatments trying to keep the cancer somewhat controlled.

To find out that working in a steel foundry in 1965 was the cause of this disease, made me extremely angry. If I had known the dangers of asbestos, I would have worn protective breathing devices. All the years of taking care of myself now doesn’t mean a thing. In 2010, I became the happiest man alive, reuniting with someone in my life that I had loved since 1972. We had so many hopes and dreams. We built a retirement home in Arizona and we planned to travel. We looked forward to spending each day together for the rest of our lives.

Asbestos has robbed me of my dreams. I spend my time now wondering how long I have and how hard my life will be at the end. If manufacturers of asbestos had been honest when they learned that their products were harmful and could kill people, I wouldn’t be living this nightmare of mesothelioma.

At this point in my life, I treasure every minutes I have with my wife and pray for a miracle.

“Facing Life With Strength and Hope” – John’s Story

Location: Minnesota, US

Diagnosis: Mesothelioma

1941 - 2016

I am a Minnesota constituent. When the doctor uttered the words “I'm sorry but you have stage 4 mesothelioma cancer” my life changed. I thought, this can't be me he's talking about. This was a death threat and I knew that there was no cure and, of course, thought I would be dead in a few months. 13,000 people die from this horrible disease every year. I have a very good oncologist and as of July 31, 2015 it will be one year since I was diagnosed.

I did go to Mayo Clinic in Rochester for a second opinion and after being told the same thing, there was no turning back. I didn't qualify for any surgery or measles trial so I have been on chemotherapy since August 2014. This is the only thing that will work for no cancer growth.

This is no picnic – don't kid yourself – chemotherapy every three weeks –the first week I don't feel good at all, the second week I am getting my strength back and start to want to do things and by the third week I am back to chemotherapy again. This is poison to anyone who doesn't have this cancer — how does someone like me feel about that?

I also have a CT scan every 9 weeks and hope like hell that there is no cancer growth. Lots of anxiety. We refer to it as “scanxiety.” After being diagnosed, I immediately lost 30 lbs., no appetite – lost muscle mass in arms and legs – all over – not a good deal, but what was I to do but have a good attitude, turn to my faith in God and try to get through it. I was a pipefitter for 42 years and worked with asbestos every day.

The big asbestos companies knew the danger but they were making billions and left it at that. After a while they did provide paper masks, but what good they did. I have lost a lot of pipefitter friends from this disease

and never dreamed it would happen to me. My wife, Rosemary has been my caregiver from the start and she deserves a medal. I know that this is hard on her as well as the rest of our family, but she is a trooper.

When we got the bad news we made a pact to face this thing together and we have. She quit her part-time job at Costco and has devoted all her time to me. We live our lives together day by day and thank God for every day.

She does take her time away from this to keep her sanity. She doesn't miss going to any appointment with me. She is my second set of ears. She takes good care of me and makes sure I take all of my meds and there are a lot. I used to be an avid golfer – out there almost every day but I just don't have the strength to swing a club now so that is something that has been taken away from me. I have also been an avid gardener but my wife and I do it together now and hope for the best. I just have to be patient and take my time, taking the time to rest. Lots of fatigue.

This is a horrible disease and everything needs to be done to find a cure. I know that it won't be in my lifetime but there will be many more dying from this disease before there is a cure.

“Ensuring Future Generations Are No Longer Ignorant About Asbestos”

– John's Story

Location: New Mexico

Diagnosis: Mesothelioma

1932 - 2001

I started a non-profit 501(c)3 Johnny O. Perea Foundation for Asbestos Education & Relief. We are educating residents and children to prevent exposures that lead to many cancers.

Through public education we intend to ensure future generations are no longer ignorant about asbestos.

We teach EPA/OSHA/WHO/CDC/DOH information based on the facts.

“We

Live Each Day with Passion and Fun” – John’s Story

State: Ohio

Born 1973

My secondary exposure occurred when I was a baby, a toddler, a child. My father worked in a factory that processed brakes and clutches for industry, and his job was as a shipping clerk. He drove the plant each day picking up the airborne asbestos along with the completed brakes and clutches, bringing that asbestos home on his clothing, in his car, in his hair. I was close with my father. He taught me how to throw a knuckle ball, never told me I couldn’t do what I wanted, and always saw the good in others. But because of his job and the conditions at that plant, I never had a chance. Neither did he for that matter. He passed in 1994 at 52 of lung cancer. I was diagnosed with malignant pleural mesothelioma in 2012 at age 38. While I lament each day that he died when I was still young, I’m glad he never knew the asbestos he brought home with him gave me cancer. He would have never forgiven himself. That I know.

Since my diagnosis and treatment in 2012, I’ve worked to live a full, meaningful, and charitable life. My daughter is only 9. My wife and I have been together since high school. We live each day with passion and fun.

We don’t just smell the roses, we actively seek to grow them. If my exposure and subsequent cancer diagnosis has taught me anything, it is that I have an advantage over others: Mortality is my constant companion; I don’t fear death, only not being able to see my child grow up. So I watch each and every stage with awe. And for the time being, I’m not dead. Each morning I open my eyes, see the ceiling, and take it in for a minute. And I’m thankful.

Each time I see my child and my wife and my friends and my family, I recognize all that I do have, all that I’ve not lost, and all that I’ve been given a chance to embrace with my time left here amongst the living.

“Vanished Dreams” – John’s Story

Submitted by: Nancy, Wife (unedited)

Location: Pennsylvania

Diagnosis: Mesothelioma

1945 – 2012

Our dreams of retirement and doing so many things together have vanished.

My grandson misses out as he was only 8 months old when John passed, but I keep his memory alive and tell him he has someone very special watching over him.

Our children hate the disease how it took a very healthy active man and withered him down to nothing. His years working in the shipyard building nuclear submarines took its final toll.

Life is not the same, heartache and emptiness prevails.

“I

Just Want to See My Children Grow

Up” – John’s Story

Location: Washington

Diagnosis: Asbestosis

Born 1960

It started out as a diagnosis of COPD then Emphysema-Asbestos Exposure-Asbestosis. I used to be able to go hiking and lift things all day every day and then one day I couldn’t do as much as before. I figured it was me getting old, then I was told I had the Asbestosis. It has had an effect on me physically and mentally.

I have two small children that I would really like to see grow up and start their own families. I am only 52 and have been dealing with HOW and WHERE did I get this? As well as being turned down by several law firms that only want in on the current trend of “‘MESO” lawsuits. Being pushed aside is really aggravating to me. I COUNT TOO.

Do they know what it is like to look your children in the eyes every morning and night and telling them you love them and not know how much longer I have here. I have not been to a doctor for this in over two years. I can feel the change in my lungs and the pain at times is more than overwhelming. I think I now know where I got exposed. At a place where I was living, they tore the roof off and did not warn tenants, which in turn “dusted” us and all of our possessions. It was when I lived in AZ for over 20 years.

I WANT AND NEED HELP. PLEASE ANYONE. THANKS AND MANY BLESSINGS TO ALL.

“One Little Fiber of Asbestos”

– John’s Story

Submitted by: Charlene, Daughter (unedited)

Location: West Virginia

Diagnosis: Mesothelioma

1952 - 2015

It turned our family’s world upside down. Because of asbestos, a wonderful man’s life was taken before his time.

He went from a strong, vibrant, athletic man to one who was very limited in what he could do. He realized early on that he could no longer do things like playing football, basketball or other sports with our three sons like he had done all their lives.

Our grandchildren who adored their “grappy” have been robbed of a lifetime with him. It was very hard to watch the daily pain and suffering he endured.

It’s so sad that “one little fiber of asbestos”, (as we were told by doctors), could so maliciously take a life and change a family forever.

“Robbed

of a Fantastic Husband, Dad, and Granddad” – John’s Story

Submitted by: Jayne, Daughter (unedited)

Location: UK

Diagnosis: Mesothelioma

1933 - 2009

My lovely dad was a family man who lived his life for my mum, my 3 siblings and his grandchildren. When he was 15 he had a job in a furniture factory and my dad’s job was to cut slabs of asbestos to fit bathroom furniture, when he was 18 he joined the army

My dad lived a very healthy lifestyle, he didn’t drink or smoke and walked everywhere. Our world fell apart when on 5th March 2009 he was diagnosed with mesothelioma after a short illness.

Doctors gave him 12-18 months to live but he only lived 6 months and passed away on 21st Sept 2009, 10 weeks before my mum and dads 50th wedding anniversary.

Life will never be the same, we all miss him so much and feel we were robbed of a fantastic husband dad and Granddad who we adored so much and he cherished us in return.

“Only 19 Years Old When He Was Exposed” – John’s Story

Submitted by: Michele, Wife (unedited)

Location: Arizona, US

Diagnosis: Mesothelioma

1946 – 2013

In 1971 I married the love of my life and unfortunately, we parted in 1972.

In 2009 we reunited and were remarried in 2010. Being with John was the happiest I had ever been and I know he felt the same way.

Since losing him I am so lost.

All our plans for the future will never happen because of asbestos.

John was so healthy and active. He acted and looked younger than his years and he still had so much life to live.

When mesothelioma took my wonderful husband, it took most of me as well. My life will never be the same without him and I miss him so much. If he had not been exposed to asbestos, we would have had a long life making all the plans we made come true. John was only 19 years old when he was exposed.

He worked hard planning for retirement ~ Mesothelioma took him before he was able to enjoy the next phase of his life. I will forever miss my wonderful husband.

Jorge’s Story (Brazil)

Submitted by: ADAO (unedited)

Country: Brazil

Diagnosis: Asbestosis

Born 1945

Jorge held many jobs in various asbestos factories between 1965 and 1982. Like many of his fellow workers, he remembers that his jobs required daily handling of asbestos products with no protection supplied by employers. His last job in an asbestos factory was working in a plant owned by Brasilit with about 800 other workers. He remembers the trucks delivering bags of both chrysotile and brown asbestos and that his job was to carry the bags, open them, and dump them into a container. He also told us about the exposure of those who lived in areas surrounding asbestos factories and knows people who became ill from only environmental asbestos exposure.

Jorge was informed by a member of the early asbestos workers’ group – which formed when women who had worked in an asbestos fabric plant realized they were becoming ill because of asbestos exposure – that working with asbestos was dangerous. He came to Fiocruz for more information and was diagnosed with asbestosis around 2000. When his employer found out that he had gone to Fiocruz, they called him to reassure him that working with asbestos, as he did, was not a danger. They offered him some money to settle for his illness.

Jorge is now active in the social movement against the asbestos industry in Brazil. He says that his colleagues from past asbestos plants formed an asbestos workers group that meets annually. However, what began as almost 100 workers in the group has dwindled to just 20 because many have died. When we spoke with him at Fiocruz, Jorge said, “All of this was a process. Before I did not know why I was sick, but after these meetings, I’ve learned that my sickness has been due to asbestos. I can tell other people about the symptoms to look for also.”

“Asbestos Fighters” 2018

“Our Father Was Our World” – Jose’s Story

Submitted by: Ana, Daughter (unedited)

Location: Arizona

Diagnosis: Mesothelioma

1925 - 1988

Our father was our world. Although he had only a fifth grade education he was self-taught and a well-read man. He loved music, art, and his family.

We were cheated out of having his grandchildren enjoy his love and his amazing intellect. He never reached retirement and 12 years after our lawsuit we received $5,000.

It was an insult to the great man my father was and to the years of hard work he gave the company that took his life and his suffering in exchange for profit.

“Our Hearts Torn Out”

– Joseph’s Story

Submitted by: Luci, Daughter (unedited)

Location: California

Diagnosis: Lung Cancer with Documented Asbestos Exposure 1939 - 2005

Asbestos tore our lives apart and shattered our family dreams!

Asbestos killed our father/grandfather one year before his retirement from Public Utility Tunnel & Street Gas Leak Foreman 16 years to Owner Sapienza Plumbing & Maintenance 29 years greater Los Angeles area 64 years of age.

His plans to retire with his children and grandchildren shattered! Every Holiday a sadness, every grandchild’s graduation, recital, awards, birthday! No PAPA! Our hearts torn out and buried with him.

His smile…his wisdom … his love…his humor … his hugs … his kisses...his love for his family and life!!! NOTHING CAN EVER REPLACE!

ASBESTOS WE HATE YOU YOU HAD NO RIGHT TO KILL OUR PAPA!

“Bottled Up Inside” – Joseph’s Story

Submitted by: Vernon, Son (unedited)

State: Delaware

Diagnosis: Mesothelioma

1930 - 2010

I would like to share my Mesothelioma story. My story has been bottled up inside of me and making me suffer. I hope that me telling my story will help me and maybe someone will read it that would be willing to help.

I am the son of the late Joseph F. Giuttari. Joseph was in the United States Army from 1948 to 1954, where he was trained as an auto/truck/heavy equipment mechanic and was stationed in Germany, When he was honorable discharged in 1954, he continued his work as an auto mechanic until he retired.

While working as a mechanic he was exposed asbestos brake dust, from changing brake pads, clutch linings and engine gaskets.

When my father first became sick, he developed fluid on his lungs which had to be drained off. We had to take my father to John Hopkins, where he was diagnosed with Mesothelioma. He suffered for the next eight months and died a horrible painful death.

My father hired a lawyer from Wilmington De, upon his death I took over the case as his sole beneficiary. The defendants in the lawsuit were the automotive manufacturers, foreign and domestic, and construction equipment manufacturers and brake manufacturers because my father worked on a large variety of cars, trucks and construction equipment.

The case started in May of 2009. My father did depositions before he passed. Some of the defendants settled for small amounts. The case never made it to trial. I felt this was due to the Delaware Mesothelioma judges.

Our case was handled by three different judges because Delaware kept appointing new Asbestosis judges. I felt that my fathers case fell through the cracks and was mishandled. On top of that the lawyers have kept all the monies from the settlements. I am not sure on the exact amount but I believe it to be around $ 200,000 or more. We had a contract with the lawyer where they would get one-third of any monies received. We were signing releases throughout the four years that our case was active, and did not receive any of the monies collected. We stopped signing the releases due to not receiving any compensation and the lawyers said our case would not go to trial and dropped our case. We have been told by the lawyer that there is not any money and have not received any monies to this date. The lawyer has never sent us a statement of monies received. As far as we are concerned the lawyer stole the monies from my fathers Mesothelioma case.

My wife and I took care of my father until his death. My wife left her job for one year, and we spent every last dime paying for medications, motel rooms, travel cost, and treatments. This has put us in financial difficulties and we have lost our credit, we are in arrears for property taxes, and have an equity loan on our house.

I lost my best friend when I lost my father there is not a day that goes by that I don’t think of him. My mom died eleven years prior from cancer, and we now believe that it was from washing my fathers work clothes, which exposed her to the Asbestos.

“Asbestos is a Hidden Evil” – Joseph's Story

Submitted by

:

Lexi, Granddaughter (unedited)

State: Pennsylvania

Diagnosis: Mesothelioma

1937 - 2005

My Pop pop was the most important man in my life, always kept me smiling and support me through everything.

In June 2005 my life was forever changed, when he was diagnosed with Mesothelioma.

He received surgery from the very best, but sadly he was taken from me on Sept. 7, 2005. I will never be able to hug or kiss him again, or even say I love you. Asbestos is a hidden evil that needs to be banned for good.

Thousands are affected by this families are destroyed because of losing loved ones. It is time to end asbestos for good, and help those suffering from Mesothelioma.

It is up to us the future generations to take up the torch and find a cure for Mesothelioma.

“The Power of Public Health Advocacy: A Patient’s Perspective” – Julie’s Story

Location: Missouri

Diagnosis: Peritoneal Mesothelioma

Until my diagnosis in 2006 of peritoneal mesothelioma, I had no idea about the devastation wreaked by asbestos, and the industry that supports it.

The countless lives destroyed by this greed are unconscionable.

My family has been put through unimaginable grief and pain, and my daughter, 3 at my diagnosis, will never be able to regain the time she spent without a mother while my attention was focused on fighting this horrific cancer.

“Asbestos Not Only Kills People – It Destroys Lives” –

Julie’s Story

Submitted

by

: Rod, Partner (unedited)

Location: Australia

Diagnosis: Peritoneal, Pleural and Reproductive Area

Mesothelioma

1944 - 2011

Asbestos Not Only Kills People

– It Destroys Lives. 2008 was to be our year! Julie and I had been together 23 years, brought up three boys and had a successful business, we dared for the first time, to dream of having scheduled holidays!

Yes life was good ………. we dared to dream! Our life, our world, came crashing down at the start of July 2008, when Julie suggested I might want to take some time off work, as she had to have some tests.

A month later, on July 30 at 7.30pm, standing on a footpath outside a local ‘Indian’ restaurant, where we were celebrating our middle son’s birthday, we got told the news no one should have to hear, “Julie had the worst possible test results, she had extremely advanced mesothelioma and at the best had 2 months to live!”

Mesothelioma, never heard of it, what is it? Can’t be that bad! We were soon to find out it was, it is, that bad! In a short space of time, we were to learn Julie’s condition was far worse than thought, not only did Julie have mesothelioma in the stomach (peritoneal) and in the chest (pleural), but tests had found a large (9cm – 3.75 inches) ‘ovarian’ tumor [this was later to be proven also to be mesothelioma] and to add insult to injury, possible tumors in the spine. We fought the battle for 3 years, 1 month and seven days.

Never once giving up, Jules always looked at the positive, and believed there was always somebody worse off, even as she endured test after test, blood transfusions, operations and chemotherapy. By November 2010 we were told there was no treatment left, life from now on was about ‘quality’, not ‘quantity’!

Julie loved our property and wanted to see out whatever time she had there. I decided, against Julie’s wishes, to wind back the business so I could look after Jules at home.

With the help of a wonderful team of nurses from the local Royal District Nursing Service, I am proud to be able to say we achieved this. Julie died at home, surrounded by her ‘loved ones’ and two treasured little dogs, at 1.27am 6th September 2011.

Julie was an inspiration to all she came in contact with – she will always be my rock!

“Turned Away” – Julius’ Story

Submitted by: Martina, Wife (unedited)

Location: Canada

Diagnosis: Malignant Pleural Mesothelioma

Asbestos did not change our life, the ignorance of Canadian government and lack of any treatment did.

In Canada, mesothelioma is considered an occupational disease and it falls under the WSIB. We were recommended to Dr. Deperrot in Princes Margaret Hospital in Toronto. Since Julius asked more question about the disease and operation than the doctor wanted to answer and since Julius asked for a second opinion, the only doctor fired Julius and left us with no help. Julius did not want chemotherapy of radiation.

We were left on our own in the country that claims to be a best country in the world since we have a free public health. Truth is – we do not have any medical help what so ever. We got thorasic surgeon who would drain the fluid from the pleura once a month. Later on Julius had “installed” a permanent drainage tube and was drained every second day by a home nurse. Just family doctor is taking “care” of Julius by prescribing enormous amount of morphine.

We asked for CT scan as recommended by radiologist (after the regular ex-ray), but we were asked “what for?” suggesting that it is a waste of money for someone considered dead already. Since last year October I am being told that my husband has about 2 – 3 weeks to live. Two weeks ago I was told that he has a week to live, maybe two. He is still alive but he is dying of desperation for not being able to get a medical help he needs.

The meso had spread to his right side (just a traces of fluid), to his tummy and especially to his liver. His feet are swollen very much but nobody does anything – again since he is going to die anyway. I am absolutely desperate. I want to help my husband. I am terrified every morning that I

will find my husband dead in his bed. On March 12, 2012, I had to call 911 since Julius’ heartbeat was 210 beat per minute. It would go up and down between 155 – 210 beats. Julius got a heart medication only to wait to see his children. I was told that he will not make it alive from the hospital. He did. March 14, we took him home. He did not want to die. He was fighting to live. Finally, March 23, 2012, his heart gave up for ever. It was the morning after my birthday. Julius was a geologist who worked for Federal Government in 1984-1989 (not absolutely sure about the date).

His boss of that time was interested ONLY in promoting asbestos rather than to take the whole job seriously. Julius was not involved in promoting asbestos or asbestos in general. He was a base metal specialist. Any time he would need his boss signature, he was not available because the asbestos was the “hot stuff”.

That needed attention to be heavily promoted even though the first documented death from asbestos dates back to 1908!

“Asbestos

Has Taken a Lot From Her but Her Spirit Remains” – Karen’s Story

Submitted by: Geoff, Husband (unedited)

State: Massachusetts

Diagnosis: Mesothelioma

Born 1974

Before mesothelioma my wife was a healthy and vibrant 29-yearold woman. Now she sleeps on a vent and has a tracheotomy. She cannot drive.

She is on permanent disability. Breathing is difficult for her. It is a chore for her just to bend down.

Asbestos has taken a lot from her, but her spirit remains.

She fights every minute of every day not to let this horrific disease get the best of her.

“It’s

Been Like a Nightmare” – Kathleen’s Story

Submitted

by:

Carol, Daughter (unedited)

Location: Australia

Diagnosis: Mesothelioma

1936 - 2014

It’s all been like a nightmare, and all happened so quick. We never knew that Mum had worked in an asbestos factory in the UK in 69-70.

Even though we lost a friend to mesothelioma Mum never realised how he got it. We were all so naive but not anymore. My Mum was the most beautiful person you could wish to meet, always doing and giving to everyone. She lived for her faith and her family, nothing came before them. She had great strength and took her diagnosis so bravely that left me awestruck, she was do brave.

My life feels empty on many levels. I spent every day with my beautiful Mum from diagnosis to her passing, life was so busy and now empty. We had lots of special times with Mum since her diagnosis, we laughed, we cried, drank wine, went for drives in the hills and the beach, sat and looked at the beach, talked, had family dinners and had a “farewell party”.

Mum is the first thing on my mind when I Wake in the mornings and she is the last thing on my mind at night, I miss her every day…..life is empty.

I love you Mum xxx

“Robbed of His Dignity” – Keith’s Story

Submitted by: Judith, Wife

(unedited)

Location: UK

Diagnosis: Mesothelioma

1945 - 2012

Asbestos robbed my husband of seeing our daughter reach her 40th birthday and our grandchildren become adults.

It also robbed him of his dignity, being able to walk for miles in the countryside, along the canals and rivers, travel along the preserved railway lines on his beloved steam trains, visit vintage bus rallies and watch traction engines at shows.

He never got the chance to enjoy his retirement with me and as childhood sweethearts, he was the love of my life, my soulmate and my best friend.

The tragedy is he never worked with asbestos, but his father worked for the Universal Asbesestos company and he brought the fibres home on his work overalls and left a deadly legacy for my healthy and fit husband to inherit.

Please God let there be a cure found soon so no other families have to watch their loved ones suffer and die in this way.

“Asbestos Destroyed Our Lives”

– Ken’s Story

Submitted by: Marli, Wife (unedited)

Location: Canada

Diagnosis: Mesothelioma

1950 - 2011

My husband was a fun loving 60-yearold, fit, active man before asbestos destroyed our lives.

We were getting ready to retire and enjoy a new stage of our lives. Ken battled this disease with everything he had, never giving up hope, his wish was to keep our lives as normal as possible for as long as possible.

Ken never knowingly worked near asbestos, mesothelioma was an unfamiliar word to us.

We went to our emergency room thinking he was having asthma problems or possibly pneumonia only to leave in a state of shock. We stayed positive, prayed, ate a good diet, exercised when he felt well enough and spent time with family & friends. He will never get to see our son marry, never be a grandfather and never get to grow old with me the way we planned.

For all who love him the future we planned to share with him is lost because of a disease that should not exist.

“My Daughter Will Not Get to Know Her Grandfather” –

Kenneth's Story

Submitted by: Catherine, Daughter (unedited)

Location: Michigan

Diagnosis: Mesothelioma

1958 - 2013

The day my father told me he had mesothelioma was devastating. He lived up north in grayling Michigan where he was receiving treatment.

When they started running out of options we started thinking of other venues. My husband and I invited him to live with us downstate so he could go to Karmanos Cancer Institute. There he received experimental treatments until one day he was too weak to undergo the treatments and was placed on hospice care.

He passed away just 6 months after my daughter, his only grandchild was born. It hurts to think my daughter will not get to know her grandfather who loved her so much. We are coming up on one year since he has passed, and I miss him every day.

I was his caregiver throughout the rest of his days, and I am so very happy I was able to do that for him.

“Raising Hope” – Kurt’s Story

Submitted by: Sue, Wife (unedited)

Location: UK

Diagnosis: Mesothelioma

Born 1968

My darling hubby Kurt was diagnosed with Epithelioid Mesothelioma in October 2014.

This dreadful cancer, caused by asbestos, is incurable with a poor prognosis. Since diagnosis, Kurt remained positive throughout his chemo and radiotherapy and responded well to his treatment.

Through contact with Mesothelioma UK, he gained access to further specialists in the field of mesothelioma and opted to have a radical operation in June of this year to remove the linings of his lung, chest wall, pericardium and diaphragm in an effort to remove as much of the cancer as possible and therefore, hopefully, buy him more time.

Mesothelioma UK has been a fountain of knowledge which has helped us come to decisions about treatment options and have always been on the other end of the phone when we have needed advice or support…which we are so grateful for. Please help us to raise as much as possible to provide this worthwhile charity with the funding they require to continue their excellent work. Thanks for taking the time to visit our JustGiving page. Myself, family and friends have decided to abstain from alcohol during January to raise cash for Mesothelioma UK..a very worthwhile charity that has helped us immensely over the past year. (Last year we smashed our target and raised over £3000 for the Mick Knighton Mesothelioma Research Fund).

Thank you so much. Sue, Den, Darran, Karen, Jo D, Jo R, Caroline, Sue S, Jo H & Neil.

“Forced to Fight an Unworthy Foe” – Larry's Story

Submitted by: Courtney, Daughter (unedited)

Location: Alaska

Diagnosis: Mesothelioma

1945 - 2012

In my life the asbestos destruction continues … I grew up daddy’s little girl. I believed he would always be there for me. It never occurred to me that multiple money-hungry corporations were conspiring to kill him.

In 2006, my father, Larry Davis, was misdiagnosed with testicular cancer. From diagnosis to multiple opinions, a botched surgery, sepsis, rehab, colostomy, failed reversal, another failed colostomy reversal, and finally a new diagnosis: Peritoneal Mesothelioma, asbestos the known the culprit. I watched my dad who had overcome some of the toughest tests of endurance and perseverance forced to fight an unworthy foe. An adversary that may have killed his father, mother and grandfather.

Mesothelioma killed him a few days shy of his 66th birthday, before walking me down the aisle and seeing that I would be okay. I grieve for all the things we lost. And I continue the fight he started.

A large earthquake in November of 2018 shook loose enough asbestos from the ceilings that, as I write this, nearly ten months later, asbestos abatement is only now complete at Joint Base ElmendorfRichardson. The Air Force-run base refuses to acknowledge the asbestos issue even though we know the earthquakes will continue here and service members will be exposed.

In May of 2019 a childhood friend of mine died from Mesothelioma. She survived Stage IVb Hodgkins Lymphoma, then heart disease as a result of treatments, only to succumb to Pleural Mesothelioma from exposure to asbestos, possibly in her baby powder and in our school. Another beautiful life lost.

The trail of destruction asbestos leaves has crippling effects. I wonder what my future holds based on my family’s past. I will keep fighting as it has all changed my life.

“Asbestos Has Literally Flipped My World Upside Down”

– Larry’s Story

Location: Florida

Diagnosis: Mesothelioma

1945 – 2012

Asbestos has literally flipped my world upside down. Never did I realize how harmful this so-called ‘miracle mineral’ would be.

After 5 years of some of the worst pain I have ever felt, surgeries (almost too many to count) and extremely limited resources on how to stop this epidemic, I now advocate for other victims and research funding. I have spent the past few years talking to every politician who will listen, and some that won’t, asking them to ban the United States’ use of asbestos. It can still be found in everything from automotive parts to heating & cooling systems to construction to Military housing & building.

Yes, we are no longer spreading asbestos in classrooms while the students sit there, but hundreds of unknowing people are exposed every day. As I await my next chemo session here at the University of Maryland Medical Center, I continue to push others to work for relief from this deadly disease.

I have signed numerous law firms to donate to my race the South Florida Miles for Meso, I have invited friends and physicians to help get out the word at my Health Symposium and I will not stop in my efforts. So you ask, ‘How has asbestos changed my life’? It is an entirely new life.

Never could I have imaged the choices I would have to make, all the hospitals & doctors I would visit, the politicians I would beg to sign legislation against using this carcinogen, and the pain it would cause.

“Four Generations” – Laura’s Story

Location: Montana

I share this story not for me, but for four generations (20+) members of my family, the youngest just seven; and the thousands of families in Libby, Montana; and all Americans across the United States.

For decades, the asbestos of Libby, Montana was mined, shipped, and processed across our nation for distribution to manufactures for use in their products.

Libby, Montana, a Beautiful Town with Beautiful People, now under the declared 2009 Asbestos Exposure Health Emergency.

My next to Eldest brother: Diagnosed with Asbestosis, with kidney removal, my mother: diagnosed with breast cancer, has had a Double Mastectomy. My eldest brother: diagnosed with cancer, deceased. Sadly, this is just the beginning.

Thousands of families in Libby, for generations to come, will continue to be diagnosed from the asbestos exposure.

“I’m

Fortunate To Still Be Alive”

– Lenny's Story

Location: Oregon

Diagnosis: Mesothelioma

Born 1948

I was never a big strong guy, but now I’m very weak, spending too much time in bed, having trouble walking, can’t run or ride a bike anymore. Can’t do pushups.

On the positive side, I’m fortunate to still be alive. I got to travel to see doctors in New York, Baltimore, Washington DC and San Diego, and turned each one into a fun vacation with my family.

Best of all, I’ve drawn closer to my G-d and He to me.

My full story is located at: jewishsinner.blogspot.com

“With Love Comes Hope” – Lonna’s Story

Submitted by: Kim & Kristen, Daughters (unedited)

State: Minnesota

Diagnosis: Pleural Mesothelioma

1940 - 2009

My twin sister Kristen and I (Kim) lost our mother in September 2009. It was 6 months before we had a accurate diagnosis of her illness, which was quickly followed by suggestions for funeral planning and how to talk to your children about your passing. The doctors were very little help in finding a treatment method or any hope of support.

After some diligent research of our own we found Dr. Sugarbaker based in Boston, she went through an EPP, chemotherapy and radiation after which she had several months’ “cancer free.”

Then some new symptoms revealed the cancer had spread to her lower abdomen and there was little more we could do.

As young-adults who had lost our father as young-girls we were again struggling with the cruelty of life as we held her hands and comforted her as she took her last breath, surrounded by loved ones in our family home.

“The Only Comfort We Have Is Knowing He Did Not Suffer At The End” – Lonnie’s Story

Submitted by: Crystal, Daughter (unedited)

Location: Arkansas

Diagnosis: Mesothelioma

1953 - 2014

My dad was & is my hero he always will be. He was a great man. I guess in a way he was lucky he didn't suffer needlessly with his mesothelioma.

He became dehydrated from his chemo & was admitted to the hospital in tues sept 30th with kidney failure from being dehydrated he was placed on a ventilator in thurs oct 2nd because he was having trouble breathing. They had him completely sedated. They told us our only hope was kidney dialysis due. He made it 15 mins in the dialysis machine & then went into cardiac arrest. He was heavily sedated so he never any of it.

The only comfort we have is knowing he did not suffer at the end. He will be missed everyday by myself, my 2 sisters our wonderful mother & his 4 grandchildren.

“I Will Not Die In Vain”

– Louise’s Story

Location: Australia

Diagnosis: Mesothelioma

1954 - 2017

My father worked in the building trade in the 1970s and died a terrible painful death of pleural mesothelioma in 1985 after only 6 months. I used to wash his work clothes, vacuum his work van … also the building I first started work in 1971 had 4 times the legal amount of asbestos in the ceilings.

Being diagnosed with this cancer through no fault of mine has cut my life short!

Every day I live for the moment as that is all we all have! Why am I still here when others have died?

I believe I have a purpose in life and that is to raise asbestos awareness and if by doing so it saves even one life from this terrible cancer then I will be pleased and will not die in vain!

“I’m Still Fighting Daily” – Maggie's Story

Location: Missouri

Diagnosis: Mesothelioma

Born 1979

January 5, 2015 at 3:00am I woke to horrible chest pains. At the time I was a month into my 35th birthday and lived alone. I had been dating my now husband Doug for two years.

He took me to get checked out at the hospital since my primary doctor was out of town. The hospital ran a series of test but it wasn’t until they did a chest xray when they found a 1 inch by 2 inch tumor on my right lung.

They suggested I get this checked out further but they were not equipped to perform a biopsy.

Later that day I got a call from my primary doctor – he was on vacation in Mexico but saw my test results and told me this was serious and I needed to get a biopsy. He had already scheduled it for a few days later. I was told that we should get the results in a few days. My Doctor was in constant contact but it took almost two weeks to hear the diagnosis, the hospital had sent my samples to three different labs to confirm the diagnosis. I remember is was a little after 5 pm on January 26 when my doctor called. I walked into my office and sat down, he offered for me to come to his office but at this point I had to know the diagnosis. He said you have something very rare called Mesothelioma.

He scheduled a Dr. appointment with an oncologist at Barnes Jewish Hospital for January 28th. I went to the appointment and the oncologist said he didn't believe I had mesothelioma because I'm not a 75 year old male and my parents didn’t hold jobs tied to the asbestos industry. He then called a surgeon to consult on my case. The surgeon agreed and said I was too young to have mesothelioma and he suggested removal of two ribs and he would cut out the tumor and I would be back to work in 3 weeks. I reminded the doctors their lab conformed the diagnosis of

mesothelioma but they refused to believe I had meso. I decided to get a second opinion.

On Feb 5 I arrived at Moffitt Cancer center in Tampa, FL and met with Dr. Fontaine. We had previously sent my slides and He confirmed I had Mesothelioma. In fact, it was plural, epithelia type and that the best course of treatment was surgery and chemo.

On March 6 I had a Pleurectomy/decortication. When the doctor started the surgery we thought it was only in my lung but we found it had spread to my heart and my diaphragm.

There are not enough words in the dictionary to describe the amount of pain I was in after my surgery. Directly after my surgery we started the process to harvest my eggs because the chemo would make me sterile. The daily shots in addition to the multiple medications I was taking was a horrific experience. After that surgery I started chemo. I took 2 different chemo drugs it took 6 hours to administer.

All of this treatment took place in Florida, I had to be away from my Fiancé, friends and family for over 6 months while I completed each step of the treatment. Its been two years since my last chemo and I’m still fighting daily.

The surgery caused permanent nerve damage that has left me on 16-20 different medications.

“When Not Even the Doctors Can Give Hope of Life”

– Marisol’s Story

Location: California

Diagnosis: Mesothelioma

Born 1981

It’s terrible to look like a being you love day to day struggle against this horrible cancer and the worst that not even the doctors can give hope of life when we do not have the financial means to pay for treatment when our country “Mexico” We close the doors of several foundations for this rare cancer.

“Pain from Something Everyday” – Marlyn's Story

Location: Maryland

Diagnosis: Mesothelioma

Born 1953

I didn’t know what asbestos was let alone what mesothelioma was.

I soon found out. This is a cancer that I shouldn’t have had. They were putting asbestos in the school in the summer break. I live a block or two away from the school, so I played at the school.

That is one of the ways I was around asbestos.

Now I am happy to be alive, so many others aren’t. But I can’t go walking up the stairs like I did in the past. I get very winded easy as I have part of one of my lungs removed. Five ribs are gone. Pain from something every day. Chemo is hard on the body as you know. I take good care of myself. Don’t go around anyone that is sick. A cold puts me in bed for days.

What hurts is the companies knew asbestos causes Cancer. I didn’t have to get sick at all.

I wish for a cure, for everyone.

"Progress and Challenges from the Frontlines" 2019

“I

Pray No Other Family Goes Though This” – Martha's Story

Submitted by: Karen, Daughter (unedited)

Location: New Hampshire

1950 - 2015

Mesothelioma has forever changed my life and my children’s life.

My mom was diagnosed on Friday the 13th 2015. She died May 12th 20015. I will never forget the doctor face after he gave me the biopsy news.

His first words were I am sorry. My mom was 64 very active. Volunteered over 20 years to the historical Society and cancer Society.

She raised over 50,000 for the American Cancer Society. She lived to help others even though my mother was very poor. I was robbed.

It’s heartbreaking to see the damage mesothelioma does to a person’s body soul and family. I wish so badly to hear her touch her or kiss her once more. I pray no other family goes through this hell.

I pray awareness and compassion spreads so asbestos can be stopped.

That’s what my mother would want me to do help others.

“Absolutely Devastated” – Marvin’s Story

Submitted by: Jamie, Daughter (unedited)

Location: California

Diagnosis: Mesothelioma

1948 – 2011

Asbestos has changed my life tremendously!! My Dad, Marvin, got sick in early 2010. He was diagnosed a few times as having pneumonia.

Finally, the last time he was said to have it, his doctor sent him to get the fluid drained, which was in September of 2010. After the fluid was drained, they tested it and said he had cancer, and it was thought to be Mesothelioma. I was absolutely devastated and so was my Mom and brother, as well as the rest of our family. On October 4, 2010, my Dad had a biopsy done and it was confirmed he did have Mesothelioma.

He was assigned an oncologist and a pulmonary doctor. When he went for his appointment, he was not satisfied with the doctor’s opinion on what he should do…my Dad wasn’t willing to just give up!! He researched and talked to a few other doctors, and they had recommended he try UCLA for treatment. So that’s what he did and was accepted into a program they have. In November of 2010, he flew out to California for his first appointment. They started Chemotherapy along with a clinical trial drug. He received chemo and clinical drug until March of 2011. His surgeon he picked, who was also located in California, did a different kind of surgery besides removing the lung. Dad went April 28, 2011 for his surgery…he was in surgery for 7 hours. The doctor removed a 5-pound tumor along with a lot of my Dad’s chest wall. The doctor found some in his lymph nodes also.

In June 2011, my Dad started radiation which seemed to suck the life out of him! We returned home to TN July 23, 2011. He continued to get worse and was hospitalized September 12, 2011, and passed away September 15.

“Put A Smile On” – Mary’s Story

Location: Australia

Diagnosis: Mesothelioma

1956 - 2017

I grew up in a small country town where the majority of the community were employed by the State Electricity Commission (SEC) who operated and owned open cut coal mines and power stations. The power stations were well known for their asbestos use and that’s where my dad worked.

I had a very happy life up until June 28th, 2014, when I was diagnosed with pleural mesothelioma.

Life changed dramatically for all of us, my husband, two sons, my daughter, daughter-in-law and my soon to be born grandchild. We had bought land by the sea and had plans to build and run a B&B when we retired in two years time.

I choose not to know too much about my illness, I have not googled mesothelioma to see what it will do to me – I will deal with things as they happen. I’m about to have my 5th treatment of chemotherapy which I’m currently coping with very well. I have the love and support of my family and friends.

I made the decision that every day I would get up, shower, get dressed, put my make up on and put a smile on my face, which helps us cope with this disease the best way we can.

“Exposed Washing a Couple of Asbestos Workers Clothes” – Mary’s Story

Submitted by: Mary Lynne, Daughter (unedited)

Location: Missouri

Diagnosis: Asbestosis

1908 - 2001

Asbestos has changed my life tremendously. I have had three very dear relatives that have died from asbestos related diseases. Two with mesothelioma, one with asbestosis and four relatives living with asbestosis.

What a horrible disease we all know this is. One of the very dear ones was my Mother. I was lucky she lived to be 89. Her asbestosis became apparent in her 70’s when this very active woman had to have breathing treatments. A few years she had Alzheimer’s disease. You can see how with these two diseases life was very hard for her and her caregivers.

Her exposure was having a laundry and washing a couple of asbestos workers clothes.

“When did we stop bringing her flowers?” – Maureen’s Story

Submitted by: Victoria, Daughter (unedited)

Location: UK

Diagnosis: Mesothelioma

1932 - 2015

When did we stop bringing her flowers?

My mother always loved the garden underdog call-it-a-weed-by-any-other-name. When April comes, I fill her room

—

bleeding hearts, sad Black-Eyed Susans, sea-blue cornflowers.

June sees the old traditionals — sweet-scented lavender, the pale-headed rose. By August, I add sunflowers, flashes of orange against the window pane.

It makes sense, to bring the garden inside so that she can remember the beauty her once strong hands had planted. Looks like a florist on Fridays, she said.

As September drops its scattered leaves, darkening mornings greet her medicated rise. The offerings dwindle — one or two blooms. Look, Mum, aren’t they beautiful?

October comes and with it the first frosts but still I forage, a small bouquet beside her bed — sweet marjoram, late marigolds, mother-may-die. Even as November turns, I find something — a twist of green mantle, a sprig of feverfew. See, Mum, there are always flowers if you know where to find them.

Her face turns away, cannot see. She takes hold of my hand, pleads, Why is this taking so long?

So, no more cards. No more florist store. What can be said that has not been said? What are they for then, the words, the bright displays?

Clear them all away. It is just us.

December hovers on the Advent hour. I go into the garden, see stars rise, feel the night-wind blow across the black. She’s out there, you know.

My sister and I watch the empty trees.

Time to go but first, I cut the last flowering rose, unexpected open-bud against the cold. Sweet-scented, one single stem. I place it beside the bed where her body lies.

There, Mum, look – even in winter the flowers bloom.

Our Story…On Christmas Eve 2014, after a harrowing nine months of tests, surgery, illness and misdiagnosis, I sat with my mother as she was informed that she had terminal mesothelioma.

She had already watched her sister and brother die from the same disease. Because of the delay in diagnosis and the mass, they offered her palliative chemotherapy and radiotherapy, and a lot of drugs, but not a lot else.

From this moment on, I cared for her and in December 2015, I had to watch her die. She was my best friend, a wonderful artist, and an amazing mother. When she was a child, her father had worked as a joiner.

My mother and her two siblings were all exposed to asbestos through his work clothes.

All three have lost their lives to mesothelioma.

“I fight on for all our Meso Warriors past, present, and future.” – Mavis’ Story

Location: United Kingdom

Diagnosis: Mesothelioma

1941 - 2023

I’m just an ordinary woman who married at 18 and washed my husband’s clothes as he came home from work at the Chatham Dockyard as a Shipwright. I didn’t know the powder on Ray’s clothes was anything other than dust bought home from work. I shook his clothes and then put them in the washing machine. Forty-eight years later I find I have mesothelioma and a death sentence of 3 months.

We lived a wonderful healthy life and bought up a family…Forty-eight years later and after a two month stay in Spain I couldn’t breathe and the story of mesothelioma began... In May I went to vote and I just couldn’t breathe…That led to me being given 3 months to live. I didn’t accept that and after my pleurodesis at the Guy’s Hospital in London, I started chemo. Cisplatin and Alimta which is the standard treatment in the UK. This worked for fifteen months then started growing again. I was offered the NGR-hTNF trial at Maidstone, this clinical trial acts on the tumours blood vessels which I’m afraid didn’t work for me or I had a placebo. So two sessions of Cisplatin and Alimta, I became allergic but it did work and we had stability again for a while…then growth was found in my next scan. What would I like next as there are no new trials or Chemo? I’m not used to a doctor having no answers. I emailed Saint Barts Hospital and that Friday I was in an appointment where Peter offered me the last place on the ADAM Trial, but it would mean another Bi-op and then I might not even be suitable. He threw me a life line of GemCarbo chemotherapy and I could have that locally…The October scan was bad news…the chemo hadn’t worked. A scan every three months was showing the growth of three millimeters every three months. Then a doctor gave me

the advice to go to the Royal Marsden where they were starting a trial that might suit me… I started Phase 1 trial of Immunotherapy. It isn’t just for mesothelioma but the trial…is a drug being tested...This drug has worked for me and to date I have had almost 60% shrinkage.

We don’t know what the future is but wouldn’t it be great if the shrinkage took it down to 0%. I’m on the drug for as long as my body tolerates so we just do not know what is going to happen....I fight on for all our Meso Warriors past, present and future.

I will carry on working within the NHS as a Patient and Trail Rep alongside TSSG Lung Members and attend many conferences and workshops around the country, I feel I’m giving back to thank the Royal Marsden and the NHS and all the wonderful Doctors and medical staff I have met for giving me longer than the original forecast of 3 months.

“What You Don’t Know Can Kill You” – Michael’s Story

Location: Massachusetts

Diagnosis: Mesothelioma

Born 1953

What you don’t know can kill you. I had been admitted into Jordan Hospital in Plymouth Ma. For what I believed to be a routine inguinal hernia operation. I had one about eight years prior, on my left side and figured I knew the routine. So, we scheduled it for 11/02/12 and all went well. I scheduled a follow up in two weeks, November 15 /2012. No problem. If you have had an inguinal hernia operation before then you know how the recovery is. No lifting anything heavier than a gallon of milk for about two weeks, no work for the same amount of time. Let’s say it’s a bit of a recovery. Usually, ten weeks before you can start feeling strong again. So along comes Nov. 15th. I go to see the surgeon that performed the surgery. “So doc, when can I return to work, how does everything look?” I remember him telling me to take a seat. “All went well with the hernia surgery. But I have some bad news to tell you.

During the operation I noticed some nodules on the lining of the abdomen, we took a piece of the lining and sent it to pathology. It came back positive, it is Mesothelioma. There is nothing we can do here for that type of cancer.” “Wait did you say cancer?” Yes his head hanging his head ever so low. “We have sent it on to Boston, to Brigham and Woman’s hospital. For another look, it will not be confirmed for another few days.” “Ok doc so when can I return to work? When can I start working out again?” The words had just gone right through me. I didn’t even know what I had just heard. “Let’s see,” he says, “why don’t you just start doing anything you want. Wait next Thursday is thanksgiving, wait until after that then you can start doing whatever.” “I’m sorry,” he says as I leave his office. “OK doc. I’ll wait to hear from Brigham and woman’s hospital. Thank you.” Wow on my way home my mind started to comprehend

what I had just heard.

When I arrived home, I told my wife of thirty-five years they had found some kind of cancer in me during the operation. “What are you saying,” she says. “They found some nodules on the lining of my stomach and it’s cancer. I think it’s called Mesothelioma.” I could not even pronounce the word. “On my god don’t tell me you have cancer.”

We do a little research on the web and low and behold the name Dr. David Sugarbaker of Brigham and Woman’s hospital pops up. Wow that’s where they sent the biopsy. Oh my god what we were reading was frightening. “Let’s not jump to conclusions. Let’s wait to see what they say in Boston.” I returned to work on November the 19th. No word,on the November the 20th at 4:55 my cell phone rings. “Hello is this Michael Dennen?” “Yes, it is can I help you?” “Yes, this so and so from Brigham and Woman’s hospital in Boston. I’m sorry to have to be the one to tell you this, but the biopsy has tested positive for mesothelioma peritoneal. Dr. Sugarbaker would like to see you at the hospital next Monday.” “Ok thank you.” I’m in shock, my worst nightmare, has been confirmed.

The long and short of it is that I’m here after 20 Mts. My cancer was discovered by the grace of God.

“Asbestos Has Changed My Life” – Michael's Story

Location: Georgia

Diagnosis: Mesothelioma

1984 - 2014

”Asbestos is deadly. It does not think, it just kills.”

Asbestos is evil.

I live in pain. I go through treatments that make me feel incredibly bad. I have to watch what I eat, or I’ll get sick. I wear a colostomy bag.

I’ve lost 150 lbs. And worst of all; I have cancer. I have one more option (medically) left to fight this cancer and that is clinical trials. These trials are 14 hours away.

Asbestos has done more than change my life both mentally and physically.

“It’s Too Soon”

– Michael’s Story

Submitted by: Andrea, Daughter (unedited)

Location: Wisconsin

Diagnosis: Mesothelioma

1949 - 2009

My dad’s left lung was removed on Thanksgiving Day 2007.

After months of recovery at 9,000 feet in the thin air of the mountains of Colorado where he had retired just one year prior, he began radiation –driving to the clinic three times a week, three hours round trip for months. Then came chemo.

After the cancer came back, my parents moved back to their home state of Wisconsin where we were all born and raised.

My dad did a series of chemo treatments until his death last July.

“Eighteen Months to Live” – Midge’s Story

Submitted by: Rachele, Daughter (unedited)

Location: Vermont

Diagnosis: Malignant Pleural Mesothelioma

1933 - 1992

In the spring of 1990, my mother, Midge Rylander, rushed to the hospital because of a persistent cough, chest pain, and shortness of breath. She thought she had pneumonia, but her diagnosis turned out to be much worse. Malignant pleural mesothelioma.

After her diagnosis with mesothelioma, my mother started a daily journal. When I read my mother’s journal shortly after her death in 1992, I remember reading that she wrote her journal so that her experiences could help others. I remember wondering at the time how her journal was going to help others since no one was going to read it except her children. When I re-read my mother’s journal recently, I finally realized that Mom wanted her journal published so that her experiences could help other people. I then spent months transcribing my mother’s handwritten journal and letters and finally published them in my book Eighteen Months To Live, which is available as an eBook on Amazon.

Here is an excerpt from Eighteen Months To Live: “November 7, 1990: I didn’t think about being born. Death is like birth… it happens. We think about dying. We deny it but we do think about it. None of us believes it can happen to us. But it does. I’m torn between two very strong opposing views. I want to think about and plan for the future. But I won’t buy new clothes because I don’t believe I need them because there is to be no future for me. Having cancer is burdensome, yet a blessing. Death is unavoidable, with or without cancer, but I cannot proceed with plans. This is wrong.

I want to have a future and I will have a future just as before. However, I am now more cautious about all I say and do.”

“Staying Positive” – Mike’s Story

Submitted by: Jessica, Wife (unedited)

Location: Massachusetts

Diagnosis: Mesothelioma

1982 - 2020

My husband Mike was diagnosed with mesothelioma at the end of 2011.

He had been experiencing some pain in his lower back and went to an urgent care facility to get an x-ray, just as a precaution. Mike was told he had cancer and it took pathologists about a month to finally pinpoint it down to mesothelioma. At first, we were in total shock and denial. Mike was 29 years old at the time…how could he possibly have this weird disease that affects older folk?

Once we got past the denial and all the anger, we knew we had to do something. After 4 rounds of chemotherapy, we headed up to Boston to meet Dr. David Sugarbaker. Mike received an extrapleural pneumonectomy on May 31st, 2012 to remove his left lung and the tumor. Luckily, the cancer cells were all dead thanks to the chemo and it had not spread to his lymph nodes.

As of now, Mike is cancer-free and we owe his life to Dr. Sugarbaker and his team! Looking forward to making many wonderful memories with my husband for many, many years to come and starting a family soon….STAYING POSITIVE IS KEY!!!!!!!

“The Opportunity to Grow as a Person” – Mike’s Story

Submitted by: Robin, Daughter

(unedited)

Location: Ohio

Diagnosis: Mesothelioma

1951 - 2011

My father was diagnosed with Mesothelioma lung cancer in September 2009. They found over 20 tumors on his lung.

The first doctor we visited told us not to fight it, but we refused to give up. After surgery, chemotherapy and radiation, the cancer spread to my father’s brain.

He died on January 5th, 2011.

Losing my father has been a traumatic experience for not only me, but for my whole family. Asbestos killed my father and now he has missed mine and my sister’s graduations and the birth of his granddaughter. It is not easy to lose a loved one, and it is something you can never truly move on from. I took this experience as an opportunity to grow as a person.

Dealing with my father’s illness made my family and I much stronger. We have all been truly humbled by our experiences. Mike Tucker was a great son, brother, husband, father, and friend. He will forever be in our hearts. Today my family and I choose to honor my father by fighting for an asbestos ban.

My father did not have to die, and we will never stop fighting for justice!

“So Much Suffering” – Mimma’s Story

Submitted by: Mimma’s Family (Translated from Italian)

Location: Italy

Diagnosis: Mesothelioma

1952 - 2012

My mother was sick of pleural mesothelioma, maybe caused by water tanks in Eternit of maybe by cement from a house in the vicinity. After two years in the hospital with various chemotherapy treatment and so much suffering and torment, she died. We helped her until the end. Now we are in a vacuum.

Original response in Italian: la mia mamma si e’ ammalata di mesotelioma pleurico causato forse da un serbatoi di acqua in eternit o forse dalla vicinanza di casa di una cementeria. Dopo 2 anni trascorsi in ospedale per chemio varie e’ deceduta con tanta sofferenza e con tanto strazio da noi che l’abbiamo assistita fino alla fine. Ora in noi un vuoto e una rabbia incolmabile.

“A Life Cut Short” – Moe's Story

Submitted by: Lana, Sister (unedited)

Location: Ohio

Diagnosis: Peritoneal Mesothelioma

1979 - 2010

My brother was 31 when he died of peritoneal mesothelioma. He didn’t have an opportunity to get married nor have kids. My brother never worked in an asbestos related industry. How he was exposed to asbestos is a mystery, but the reality is that he was exposed. My brother received his diagnosis in November 2010. We were told that surgery was the only option and it had to happen ASAP. That surgery was scheduled the day before Thanksgiving.

Without the surgery, he was given six months to live.

My brother only had a miserable six weeks after his diagnosis where we watched him suffer and deteriorate away. In a few short months, the symptoms came on and when doctors finally figured it out why, my brother’s chances of getting better were slim. He survived the surgery but his body’s vital systems started to shut down. A month after the surgery we had lost him.

My brother was in great shape, ate healthy and worked out. He never took a sick day off from work until the last week in October when he was admitted to the hospital for the first time. I think about the precious time that passed between his first admittance to the hospital, or the two after that, and his surgery a month later and I wonder if an earlier diagnosis would have made a difference. Would he have had a better chance of at remission or would he have had more time with us? What if we knew more about mesothelioma before the doctors told us surgery was the only option?

My brother was full of life and everyone that ever knew him loved him. This disease took him away from us and our lives (especially our mom’s), will never be the same again.

“A Deadly Workplace” – Murgesan’s Story

Submitted by: Murgesan’s Family (unedited)

Location: India

Diagnosis: Critical Lung Cancer

Unknown - 2009

Murgesan was a laborer in the company. He was suffering with breathing difficulties and used to take medication for TB. OSHA and Kalyaneshwari did a medical survey in 2003/2004 and Dr S R Kamath certified him to be suffering from Grade 2/2 Asbestosis.

However, ESI Corporation did not give him compensation based on this certificate. To avail compensation again on 6-6-2006, another X Ray was taken and Dr V Murlidhar certified Asbestosis and also said that cancer is suspected. In 2009, when his health condition deteriorated, ESI referred the case to Gujarat Cancer research Institute and there he was diagnosed with critical lung cancer. By then it was too late for treatment and he died on 11-3-2009.

He is survived by Wife, son, daughter who is married. Son has refused to file compensation claim with the company fearing loss of his own job (he works in the same company handling the same hazardous substance).

“A Veteran Exposed” – Norman's Story

Submitted by: Stacey, Daughter (unedited)

Location: Connecticut

Diagnosis: Mesothelioma

1927 - 2007

My dad, Norman Forin, passed away almost eight years ago from this horrible disease. He was exposed to asbestos in the Brooklyn Navy Yard where he worked when he was only 15 years old. He then joined the Navy to fight in WWII although he was underage and forged his parents’ signature to enlist.

He told us stories of how he worked with and was forced to sleep under pipes which emitted a fine white powder. He was 16 at the time.

We know now that when my father was exposed, the companies mining the asbestos, using the asbestos and purchasing asbestos knew about its dangers. No one was warned, given protective gear, etc. Some 60 years after his exposure, my dad started to exhibit symptoms, and after being misdiagnosed many times, he was found to have the disease and faced chemotherapy and experimental treatments with dignity and the fight of a young man.

He did everything he could to help others suffering and to further research for a cure. I am blessed to have had him as my father. I pray for all those dealing with this horrible disease and pray that a cure is found soon.

“I

Never Dreamed I’d Be Here Writing This” – Nozomi’s Story

Location: New York

Diagnosis: Sarcoidosis, Asbestosis

Born 1956

I was diagnosed with sarcoidosis in 2004 (which can cause fibrosis and lead to complete pulmonary failure) and with asbestosis in 2018 (which has added to the fibrosis I already had).

The asbestosis diagnosis did not surprise me because I know I had lots of exposure playing in the attic as a kid with all that asbestos insulation there. Also, in grad school, I had massive chemical exposure, which is thought to be the cause of the sarcoidosis I have, but nobody knows for sure.

Sometimes, I have breathing difficulties, but I have more good days than bad days. On the good days I live life to the fullest, and on the bad days, I take care of myself.

Asbestosis has changed my family and me. We gave up the joys of hiking together, going to all kinds of places, but the worst was when my kids were young and asked if I was dying. I always said I’d be fine. I suppose I am fine, in a way. Despite all the things I have had to give up and all the events I’ve missed, I still carry on.

I’m just grateful I got to be here long enough to bring up my children and see the people they have become.

“The Wind Beneath My Wings” – Pam's Story

Submitted by: Jennifer, Daughter (unedited)

Location: Minnesota

Diagnosis: Mesothelioma

1952 - 2013

Asbestos has stolen my parents. My very young, very dedicated, and very much in love, parents. First, it gave my beautiful, loving, and peacefully kind best friend and mother, pleural mesothelioma.

She was the wind beneath my wings. She was my strength. Myself, my brother, and our children were the apples of her eye, and she made she we knew it every chance she had. She was barely 60 years old.

She and our Dad were high school sweethearts and married nearly 40 years. She missed their 40th anniversary by five and a half months. She was stolen from us seven short months after diagnosis. The grief of losing our Mom, and his beloved wife, is what we ultimately believe, stole our Dad from us. He was shattered. His heart gave out eighteen months after we lost our Mom. This, we believe, is also a direct result of asbestos.

Asbestos has devastated our family. It has stolen our parents. Our children no longer have their grandparents. Some won’t even remember them. My brother and I, our children, our Grandma, our Aunt, and all of our family and their friends (and ours) will have to forever miss their presence in our lives.

That is how asbestos has forever changed my life, the life of my brother, and everyone else who knew and loved them.

“Her Death Reduced My Life to Rubble” – Paola’s Story

Submitted by: Luca

(unedited)

Location: Italy

Diagnosis: Mesothelioma

1976 - 2013

Paola’s illness and then her death reduced my life to rubble; my certainties in life, my plans disappeared into thin air. I was left with fear, powerlessness and anger…

I was living in an empty house, with days to fill and hours spent at her grave. I went from having a life I could not have asked more of, to a complete stalemate. ‘And now, what shall I do now?’

I kept asking myself I was unable to answer the question and lived day by day without thinking too much of what Tomorrow had in store, focusing on each day. And to think I was someone who planned everything (or nearly everything) ahead. How could one even imagine being thrown into such a situation? Clearly living in Casale Monferrato we knew about the danger although we thought that being so young we had more of a chance.

Is it all bad? No?! Her death brought me closer to a group of friends who have been closest to me but also suffered a lot too. And now I can only wait for the day someone will embrace me so strongly that the shards I have become will reform a complete being.

“So Many Dead Just for Others Greed” – Paolo’s Story

Submitted by: Assunta, Wife (unedited)

Location: Italy

Diagnosis: Mesothelioma

1947 - 1996

Asbestos made its entrance in my life when my husband, Paolo Ferraris, who was a politician and local councilor started getting involved in finding funds for the decontamination: he was aware of the dangers linked to the presence of the Eternit plant in Casale.

Then on April the 4th 1994 asbestos entered my private life with a blow: Paolo had the disease, I was 43 and he was 47, our children were 16, 15 and 12. Paolo and I had been about to harvest the fruits of all the work we had put into our lives: our children were growing up and we were starting to rethink of ourselves as a couple as they no longer needed us all the time. We were planning a trip, thinking of getting a bigger house, of enjoying more adult intimacy, enjoying the strong love which permeated our daily lives.

Then he got a cough and it wouldn’t go. Short breath and on April the 5th the terrible verdict: Paolo was suffering from mesothelioma. I was advised to hide the truth from him, and I did until it was no longer possible, and then he said to me: ‘You gave me two years of life. ‘How did you manage?’ I don’t know how I managed but I did. It was a nightmare.

Two years and eight months passed from the time he was diagnosed to the time he died. He did not suffer too much, at least he was spared that. But he did not see his children grow up with me and today he is not by my side to wait for our first grandchild (if it is a boy he will be called Paolo after him).

After a while I decided I still wanted to live, I bought myself some presents, I learnt how to ski, I went back to playing the piano and found love again because if asbestos had stolen his life I did not want it to steal mine too, but on the day he died there is a bit of me that went away with him.

Since then, I have been fighting with others, because we want people to know, because there were so many dead just for others’ greed for money and we want all the cancerous substances banned.

That is how I feel I can repay a just man by getting justice.

“Oblivious to the Exposure” – Patricia's Story

Submitted by: Vida, Daughter-in-law (unedited)

Location: Florida

Diagnosis: Mesothelioma

Born 1960

As a teacher for 25 years, my motherin-law never suspected that educating students in the public school system could expose her to a toxin that would one day threaten her life. And that is not the only avenue that she was potentially exposed.

Her husband of 44 years, Coolidge “Jerry” Hargrett, served in the Air Force and my mother-in-law accompanied him when he was stationed in Germany. They had a child in Germany, oblivious to the fact that asbestos products were commonly used on Air Force bases and in military housing.

Although they caught her cancer in the early stages, while the tumor was just beginning to form, my mother in law’s story stresses the importance of annual checkups as a form of preventative medicine, especially for anyone who may have worked around asbestos.

“Nothing Got Better” – Patrick’s Story

Submitted by: Kathleen, Wife (unedited)

Location: Tennessee

Diagnosis: Mesothelioma

Patrick tragically lost his battle with Mesothelioma in 2020.

7/6/20 My husband was diagnosed with mesothelioma he had gone into the ER a week before because he was having difficulty breathing we thought maybe he got the Covid or something but they found fluid on his lungs hence they did them more thorough exam and a biopsy nothing got better and he died.

Her experience with the health care was horrible in our area. It seemed like our chemo doctors wanted to just write him off after working in the Navy we got married he did our jobs and then became an LPN and worked at the VA medical center he had taken care of some men that had mesothelioma but they were well into their 70s and 80s with their diagnosis.

“Dust into Gold: Banning Asbestos Is Good Business” –

Location: California

Paul’s Story

Diagnosis: Peritoneal mesothelioma

1950 - 2019

I have been through many horrific medical procedures, like so many other patients. Sometimes I have flashbacks, especially when I visit someone in a hospital or go through a medical treatment or test – even if it’s unrelated to mesothelioma. I face periodic medical scans every few months with uncertainty, awaiting the inevitable recurrence of disease.

My illness has affected my entire family and my outlook on life. I savor every moment with my friends and loved ones, and every opportunity to do something good in the world. I work to stay educated on the disease and positive in my attitude.

My wife and I remain active in advocacy to stop asbestos poisoning, to improve medical treatments, and to protect the rights of patients and victims’ families.

This life has chosen me, and there is no going back.

"Art, Advocacy, and Academia" 2021

“Our Life Plan Has Had To Change” – Paul’s Story

Submitted by: Claire, Wife (unedited)

Location: UK

Diagnosis: Pleural Mesothelioma

Born 1978

Paul and I have been married 7 years and have a 3-year-old son called Ethan. Paul's diagnosis came as a shock to us all, as he had (and still has) no symptoms in that area. He was being investigated for something completely unrelated and they found the areas on a CT scan.

Since diagnosis Paul has had a VATs biopsy with talc procedure, major surgery to debulk the tumours and 6 sessions of chemotherapy. Chemotherapy finished in April 2013 and since that time his Mesothelioma has been stable.

Mesothelioma has changed our lives forever. Our life plan has had to change. We had hoped to move to a larger house and have at least one more child to complete our family. When Paul was told he would need to have chemotherapy, and it would start very quickly, we had to make the heartbreaking decision that Ethan would be an only child. We hope (and pray) that Paul will be around for many years to come but the nature of Mesothelioma means we just do not know. Whilst we do not know if chemotherapy will have left Paul unable to father another child, neither of us felt comfortable with bringing another child into the world not knowing how long they would have a father for. Our family here and now is the most important thing.

We plan to live life to the full, lots of holidays and doing what we want to do. For us and no one else. We have two choices! Crumble under the burden of a cancer diagnosis or make the most of what life has thrown at us. We chose the latter. We have and will remain strong and positive.

No one can say what the future will bring......

“Our World Was Turned Upside Down” – Peter’s Story

Submitted by: Amanda, Wife (unedited)

Location: UK

Diagnosis: Mesothelioma

1938 – 2012

Peter started to feel unwell in March 2011. From a totally unrelated source, both Peter’s first wife and brother-in-law had died from Mesothelioma so Peter was all too aware of the symptoms of the disease and knowing that he had worked with asbestos as a young apprentice, he was conscious that it was a possibility. After several attempts to drain his lung, he underwent a Pleurodesis in June 2011. His right lung totally collapsed in July 2011, and it was then that he was given his diagnosis.

I will never forget the day he told his daughter and son that he too was going to lose his life to the disease. In August 2011, he underwent a procedure to insert a permanent pleural catheter, which meant I could drain his lung at home to ease his symptoms. The pain in his chest continued to increase so he underwent a Percutaneous Spinal Cordotomy in October 2011. Although he didn’t particularly enjoy the experience, he said he would recommend the treatment to anyone. This treatment enabled him to fulfill his wishes and to go on holiday to the Caribbean to celebrate his birthday.

It was truly heart-breaking to see someone I had shared 14 years of my life with in so much pain and change from a fit active person to someone reduced to a wheelchair and dependent just to move around. We were told at diagnosis that he would possibly have a year to live. At the time, we thought a year was short but we didn’t realise how in that time, our lives would be consumed with the illness as the disease rapidly progressed.

We however didn’t have a year and Peter passed over on 1st January 2012, turning our world upside down.

“I Thought I Was Going to Die”

– Polly’s Story

State: Pennsylvania

Diagnosis: Mesothelioma

Born 1961

I had my gall bladder taken out. My husband and I came back in to get my stitches out, and I was blasted with Mesothelioma. I didn’t have any idea what it was. The surgeon said he sent the tumor to the Mayo Clinic. Wow, it was true!! I saw the oncologist in my town and was referred to Pittsburgh. I had Chemo prefusen. I was in IUC for 5-7 days.. It was so scary. I thought I was going to die.

When I was released, he said he would see me in five years. That wasn’t true.

While seeing my hometown doctor, he said to me, “It’s Back.” Two years later. I told Dr. Lieb, “No Surgery!!!” He said we can do rounds of chemo. I ended up with stage 3 kidney failure and neuropathy in my legs and feet. Oh my, now what. Cancer and kidney Failure!! More doctors – No No!!!

To round this all up, Mary Hessendorfer found me Dr. Alexander in Baltimore. What a Blessing. Nothing like Pittsburgh. He was in 2-3 times a day. The most I was in was 5-6 days. In March 2010, I was getting very sick. I would go to the local ER, but they couldn’t find anything. Finally, after many trips, the ER doctor came in and said, “Polly, I know what is wrong. You have scar tissue around your small intestines.” That night, I was taken by ambulance to Baltimore. I had no potassium or magnesium in my body. At any time, my heart could have stopped. I had to get a tube in and pumped up with fluid and potassium and magnesium.

A few days later, I had my surgery to remove the scar tissue. Eight inches of my small intestines were removed. I was left with short gut.

“Outliving the Unlivable” – Rachel's Story

Location: Alabama

Diagnosis: Mesothelioma

1967 - 2017

When you are given a death sentence and are blessed enough to outlive the unlivable, by a month or day, you call it a victory. On 07/10/2013, I turned 46 – a day that I was told I would never see. God is bigger than cancer! AND He gives us a chance to help the ones that don’t know they are dying…yet…

I have no idea where I was truly exposed, as multiple family members worked with asbestos and could have been a source of familial secondhand exposure.

My father worked the Navy and then in Thomas Foundry with asbestos, my mother worked at Hays Aircraft and came home covered in insulation made with asbestos, and my uncle was a mechanic working with Raybestos brakes — I loved the way he smelled like a mechanic. My uncle ended up dying with lung cancer, which was assumed to be mesothelioma.

All three worked with asbestos, and naturally I was very close to all.

So I guess I had the perfect storm to get it. It’s a shame…if we would have only known. My mom grieves every day at the possibility of giving it to me.

“One Day At A Time”

– Raeleen’s Story

Location: Canada

Diagnosis: Mesothelioma

Born 1978

I lost a lot from this horrible disease but take everything one day at a time I always say ATTITUDE is 90% of the battle if you stay positive and hopeful and fight like you never have in your life you have such a good chance!

Then again, this battle hasn’t been easy for me I have underwent 20 surgeries and lost 3/4 of my insides and I mean everything I lost my gall bladder ovaries tubes uterus omentum all of my colon 19 feet of small bowel part of my liver bladder stomach lining and diaphragm. And was left with 7 feet of small intestine and an ileostomy.

My day-to-day life is a constant battle with short I suffer from constant malnutrition and dehydration as my food comes out in 20 mins so no absorption!

But I’m still here fighting this horrible disease and it’s because my fav quote A child is a Mothers Anchor to this life! I’m currently in a first remission from stage 4 Peritoneal Mesothelioma and praying everyday so I can be here for my sons!

“A Man of Unmatchable Character” – Ralph’s Story

Submitted by: Kara, Daughter (unedited)

Location: Pennsylvania

Diagnosis: Sarcomatoid Pleural Mesothelioma

1952 - 2012

My dad Ralph was a devoted father, husband and grandfather. He worked as a journeyman steamfitter and retired as a superintendent of a mechanical construction company after over 35 years in the field. He loved his line of work and his work family.

Dad was a man of unmatchable character. He had an incredible ability to impact the lives of anyone he encountered. He did so quietly and by his exemplary lifestyle. This was evident by the hundreds of people who attended his funeral services and shared stories of how he helped them see and achieve their potential in their work and personal lives.

It is sadly ironic that being in the profession he loved, exposed him to asbestos. It is this exposure that caused the disease that robbed him of his retirement, and golden years with his wife and grandchildren.

One of dad’s doctors once said that he fought meso with “pure superhero form.” We want to honor our dad and husband’s memory and keep his legacy alive by sharing in Asbestos Awareness.

We hope to make this a battle of epic, “superhero” proportions.

Miss you Da da…

“It Brought My Life to a Total Halt” – Ralph’s Story

Submitted by: Susan, Wife (unedited)

Location: UK

Diagnosis: Mesothelioma

1951 - 2013

It bought my life to a total halt.

The rest of my life will be spent fighting against asbestos

“Information is Empowering” – Randy’s Story

Submitted by: Laura, Daughter (unedited)

State: Nevada

Diagnosis: Malignant Pleural Mesothelioma

1945 - 2012

Where do I begin…up until August 4, 2011, my sister, mother, father and I had only just heard the word Mesothelioma mentioned in those dreadful commercials on TV. Since then, it has been a race against time to save my dad’s life. My dad has undergone two surgeries and is now in his second session of Chemotherapy treatment.

There is not a day that goes by that my sister and I are not reading as much literature as we can on Asbestos and Mesothelioma.

Not only is this a horrible, incurable cancer but some Physicians and Oncologists in the medical community do not necessarily know how to treat Mesothelioma. We have had to fight for my dad’s health care and educate ourselves quickly.

Information is empowering and the more we learn, the angrier we become at knowing that Asbestos should have been banned worldwide a long time ago!

“Handed a Death Sentence” – Randy’s Story

Submitted by: Wendy, Wife (unedited)

Location: Tennessee

Diagnosis: Mesothelioma

1955 - 2011

On 11-11-08 we didn’t realize that we were being handed a death sentence. When the doctor told me Randy had Mesothelioma, I was in shock. I couldn’t even pronounce it let alone know what it was. So, our journey begins.

All of our hopes, plans, and dreams were now on hold. Randy was diagnosed with malignant pleural mesothelioma at the age of 53. He had been exposed to asbestos at his job 30 years ago. On December 3, 2008, he had surgery to remove his right lung, pericardium and diaphragm at Emory University Hospital in Atlanta, GA. He then underwent chemotherapy and radiation. Randy’s recovery time was amazing. He faced it with faith, courage, strength and fight! Never complained once!! We were told that he had 9 to 12 months to live. Randy beat the odds! Faith and lots of prayer and an excellent doctor allowed us to have Randy for 3 years. We were blessed!

I watched this disease zap the life out of my young, strong healthy, hard working, golf-loving, best friend, soulmate, faith filled man, and daddy. His final days were so mean to him. He was in excruciating pain, gasping for air, wheezing and coughing uncontrollably. No one should have to struggle like that. I prayed to God to make the pain and suffering stop.

On September 7, 2011, at 5: 55 a.m., Randy was called home to be with his Lord and Savior. For that I am thankful. I miss him so much. I pray for God to give me strength to get through each day and raise our 16year-old son and instill in him all the things that his dad was.

Thank you for allowing me to share our story.

“India Through My Eyes” – Ravindra’s Story

Submitted by: Ravindra’s Family (unedited)

Location: India

Diagnosis: Asbestosis

Ravindra Mohite joined Hindustan Ferrado Ltd factory in Mumbai on 20th September 1973. He started as a casual worker but worked in multiple departments over his career, including Textile, Brake Clutch Lining (BCL), Mill Board, Goods Received Section (GRS), Friction Goods Warehouse (FGW), Dispatch, Maintenance, and Compress Asbestos Fibre (CAF). He became a permanent worker in 1977 and was assigned to the textile department, where he worked on the framing machine. He got Rs 550/month (US $12.21) as salary.

Ravindra was promoted to frame operator in 1980. He cleared the exam for a temporary jobber and became a permanent jobber in the year 1992. During 1985, the plant was visited by superiors from England and a new wet process policy was initiated after the visit. The company changed its name to Hindustan Composites Ltd in the year 1993 but closed down in 2006. According to him, the company used to conduct regular medical check-ups of the workers but never disclosed any results to the workers. These tests became less regular in the late 90s.

Ravindra says that none of the workers were ever informed of the hazards of the material with which they worked. They noticed warning labels on the bags but company officials never explained the hazards nor outlined appropriate safety measures for handling asbestos. The work environment was very dusty and there were no exhaust systems in place.

It was only in 2004 – when the Occupational Health and Safety Centre (OHSC) organised a medical camp outside the company gates – that workers became aware of the real dangers of asbestos. Forty-one workers of the camp were found to be suffering from Asbestos Related Disorders (ARD). One of these workers died almost immediately after diagnosis. In

2005, thirty-six of these workers filed a claim for compensation under the Workmen Compensations Act of 1923. The case is still going on in the labour court, but the company flatly refuses to accept any exposure claims.

In 2004, Ravindra was diagnosed by Dr V Murlidhar with Asbestosis with 50% disability.

In 2008, after meeting barrister Krishnendu Mukherjee, workers came to know about the trust fund established by Turner and Newall (the original owner of the company). With his help, workers filed compensation claims in the trust fund. So far, 178 claims have been filed. Compensation has been received for 115 of these claims and the rest are expected very soon.

Another 70 claims are being finalised for filing in the trust, which involves secondary exposure and claim for a contract worker.

“A Daily Struggle” – Raymond's Story

Submitted by: Kimberla, Wife (unedited)

Location: Indiana

Diagnosis: Mesothelioma

1956 - 2009

Asbestos changed my life when it took my husband away from me.

We only had 9 years together. I personally have become a bitter lonely woman trying to make the most of everyday.

I thank the Lord above for my family…without them, I may not be here.

It’s been almost 6 years since my husband left this earth and it is still a daily struggle to grasp that fact.

“Deadly Asbestos Took Away My Dad” – Raymond’s Story

Submitted by: Pauline, Daughter (unedited)

Country: Australia

Diagnosis: Mesothelioma

1925 - 1982

I had never heard of mesothelioma before my father’s diagnosis in 1982. At that time there was no treatment available and sadly he passed away aged 57 years of age.

I never dreamed my father would die so young; his diagnosis, and his death soon after, came as a terrible shock. His grandchildren grew up without knowing their grandfather.

Deadly asbestos took away my dad and left a hugest void imaginable in our family.

“Trying to Make a Living” – Rebecca’s Story

Submitted by

:

Pamela, Daughter (unedited)

Location: Georgia

Diagnosis: Mesothelioma

My mother was exposed to asbestos trying to make a decent living as a single mother raising me by herself.

Now I have lost my best friend and the world has lost a truly amazing woman.

Before my mother was diagnosed I really did not know much about the dangers of asbestos and I want her death to raise awareness to others about the dangers of asbestos exposure.

“More Research is Needed Desperately” – Reg’s Story

Submitted by: Dorothy, Wife (unedited)

Location: UK

Diagnosis: Mesothelioma

1931 - 2010

It turned our life upside down, three weeks after Regs funeral it would have been our golden wedding, my life has no purpose without Reg by my side he was my world.

He worked for 50yrs in the film industry no idea or mention of asbestos.

More research needed so desperately.

“Our Beloved Father Robbed From Us” – Richard’s Story

Submitted by: Melanie, Daughter (unedited)

Location: Kentucky

Diagnosis: Mesothelioma

1948 – 1993

My father was a hardworking man who provided for his family.

In doing so, he was unknowingly and continually exposed to asbestos in the paper mill in which he worked.

He was diagnosed when I was just 13 years old.

He died the following year. His struggle is the story of so many. I am left with only a child’s perception of her father, and my precious memories.

My father never saw me graduate high school. He didn’t see his daughters earn college degrees. He never saw his son become an accomplished businessman. My father never held a grandchild, nor did he ever walk his daughters down the aisle. He never saw his family crumble to pieces in the wake of his death. His life was robbed from him, and our beloved father robbed from us.

Asbestos hasn’t impacted my life in one way, rather it has impacted my life in every way. No aspect of my life has been left unchanged from this terrible carcinogen.

“In the Midst of the Storm…A Rainbow Shines”

– Richard’s Story

Submitted by: Missy, Daughter (unedited)

Location: West Virginia

Diagnosis: Mesothelioma

1943 - 2008

It took the strongest man from me when my only son was just 4 months old.

It robbed my family of so much and he will not get to see my son grow up.

It was so hard to watch your daddy, the one who always took your hurt away, fade away so fast and be so upset, when all he did was work hard and try to make a good life for his family.

“Breathtaking” – Richard’s Story

Submitted by: Kathleen, Daughter (unedited)

Location: Canada

Diagnosis: Mesothelioma

1923 - 2003

My father lived a long and good life but at the same-time he was taken away by a vicious disease that was caused by asbestos and was preventable.

My life has changed drastically because of not only his death but in my own attempt to find answers to why asbestos would still be used.

I miss him a lot.

In his honor I made a film called Breathtaking about him and his work and life, my family and the some of the current politics of asbestos-use today.

He was never an activist but in the year before he died he made a legal testimony about how he was exposed to asbestos. He wanted to do this so that the companies that had exposed him were held accountable.

I feel inspired by his dedication to his family and colleagues and I hope to make a difference by telling his story.

“Rob Fought Courageously Till The End” – Robbie's Story

Submitted by: Jill, Wife (unedited)

Location: Illinois

Diagnosis: Mesothelioma

1965 - 2011

To watch your very strong, healthy and young 40 yr old husband waste away to nothing is heart wrenching.

Knowing that it is something that could have been totally prevented makes it even worse.

Rob was 46 when he died in my arms at home. He was so thin that all u could feel were his bones when u touched him. Asbestos stole my soulmate and now I am a widow at 46 yrs old.

Loneliness is almost crippling. My life will never be the same. Rob fought courageously till the end.

I will do the same till asbestos is banned 100% & a cure is found.

“Our Lives Will Never Be the Same” – Robert's Story

Submitted by: Dianne, Wife (unedited)

Location: Massachusetts

Diagnosis: Mesothelioma

1948 - 2007

I lost my husband & best friend on March 11-2007 2 days before he turned 59. He was diagnosed with mesothelioma on new yrs eve 2006.

He passed away 8 1/2 weeks after his diagnoses Bob was a great guy & father & grandfather. He owned his own panting business & built houses. He loved his family & friends & played on a softball team & loved horse racing & summers in Saratoga NY.

I will never forget on New Year’s Eve waiting for the News of his biopsy @ mass general hospital it was around 9:00 pm when the Dr. Came in his room & confirmed our worst fear Mesothelioma.

We both were so scared for each other. Bob wanted me to head home so I would not get stuck in 1st night celebrations & I did not want to leave him. Well, I headed home after a few hours & cried the whole way home, I don’t know how I could see driving. Well they found out the cancer was already in the lymph nodes & they were going to do chemo & the night before he was to start treatment his kidneys went into failure. & over the next 8 1/2 weeks he was in the hospital & then passed away.

I watched my husband go from a handsome strong man who worked hard every day to a skinny frail man who was in such pain. The day he past our family fell apart & for 9 yrs now our lives will never be the same.

It is so sad that these companies have been able to get away with this. We need to spread awareness.

“Traumatic Stress” – Robert’s Story

Location: New Hampshire

Diagnosis: Asbestosis

Born 1950

Exposure to it was one more traumatic stressful experience, in my life, and not knowing whether I will eventually succumb to effects from exposure remains to be seen.

In spite of my asking the then owner of Culver Tool & Die, on Somerton St., in Rochester, N.Y., for $0.50 3M paper masks (for all employees), We all were exposed to asbestos dust when I machined it on a milling machine at the foot of the stairs to the office.

“Could Have Prevented His Death” – Robert's Story

Submitted by: Carol, Wife (unedited)

Location: South Carolina

Diagnosis: Mesothelioma

1945 - 2012

It took me years to find the perfect person. A man who understood a strong woman and was willing to be a partner.

He passed away six months before retirement.

My comment to those companies and government officials is this:

YOU COULD HAVE PREVENTED HIS DEATH!

“Our Family and Community is Devastated” – Robert’s

Story

Submitted by: Melissa & Suzy, Sisters (unedited)

Location: Wisconsin

Diagnosis: Mesothelioma

1970 – 2015

Melissa: On August 3 after several months of misdiagnosis, my brother Robert finally had an answer to his worsening pain, mesothelioma. A scan revealed several large tumors and a biopsy told us what it was. I knew from the first time mesothelioma was said that it was not a good thing. I immediately searched online and the prognosis was not good. But not our Robert, how could this be happening to him? He was only 45 years old! They had to fix it, somehow, someway we would get him better! After meeting with a local surgeon, our family was confident and so was the surgeon that she could remove the tumors. Fast forward to the day of the surgery and after opening up his abdomen, the mesothelioma was EVERYWHERE, like a thick sludge of oil, it covered all of his organs. The surgeon closed him up and said there was nothing she could do. I immediately started contacting mesothelioma specialists around the country and was frantically sending them Robert’s medical history, scans, surgery reports, and anything else they asked for. From that day forward we had several family members including his wife and children staying with Robert 24/7, we never left him alone. We had our surgeon speaking with them to see if there was anything, sadly the only thing any of the specialists could recommend was to try chemo to slow it down. Robert had one dose of chemo on August 31, I had spent most days at the hospital with Robert but this was the first night I stayed over in the hospital with him and truly saw the pain he was in. There were no results happening from the chemo. On September 7, 2015, 35 days after his diagnosis, I was by Robert’s side as he took his last breath. Our family and community is devastated by the loss of Robert, but most of all I cry for his 3 young children who will only know by word of mouth how wonderful their father was.

Suzy: I’ll never forget the day that my sister called me at work to tell me that our brother was diagnosed with peritoneal mesothelioma. This after months of trying to figure out why he was having so many digestive issues. This news was devastating to our very large and very close family. The future did not look good for him and the thought of him being gone in a year was heartbreaking. There were no specialists in our area and the initial surgery to remove the tumors that took over his body was not successful and an effort to make him comfortable was minimal at best. The year turned into months, then into weeks and when one doctor said days, we scrambled to inform family members that they were not continuing any treatment. We didn’t even get that it was only a few hours later that he was gone. I was at the hospital but my sister was the only one with him when he died. We thought we had some time. We were always a step behind any options for him and I took off work as much as I could in that time to be with my brother at the hospital and with my family. His wife and other family members were there 24 hours a day. He had the kind of marriage that you read about in love stories and his loss has left an amazing wife, 3 kids, parents, siblings and community with a big hole in their hearts. All of this because of asbestos. Because of one fiber that invaded his body and caused this horrible disease. And it is still allowed in anything why?!?

Love you Robert E Lea and miss you every day.

“We Live Each Day Knowing We Are at Risk for Mesothelioma”

– Robert and Laura’s

Story

Location: Pennsylvania

In 2002, we bought our first house…. a home we could grow into and not out of, where we planned to live forever. It was also a fixerupper and was only affordable to us because it needed so much work, but we were young, we were ambitious, and we had the vision to make our dreams become our reality. In 2002, we were not educated about asbestos.

Our home was built in 1961 in the town of Ambler, Pennsylvania…..a small borough that became a thriving community over 100 years ago when the economic boom of asbestos manufacturing was established there. We plunged ourselves into the renovations…..we tore out fixtures and appliances, we ripped up outdated floor tiles and carpets, we repaired the existing siding before we could afford to replace it, we added a ridge vent into the roof, we sanded the wood floors where old adhesive materials remained stuck from glued-on linoleum…… we put every ounce of strength and vigor we could muster into making our house into the home we always wanted. We later found that the exterior siding, the roof shingles, the floor tiles and their mastic backing, and the sheet rock joint compound all contained asbestos.

Our labor of love had become a nightmare of epic proportions. We had exposed ourselves, our daughter, and our pets to the dangers of asbestos. We now live each day wondering what will happen to us, knowing that we are at risk for mesothelioma. Our mission is now to educate people just like ourselves…..homeowners with vision and dreams and ambitions…. to the dangers of asbestos in the home. Every substance in the home needs to be tested before doing any work. Do the research, educate yourselves, follow asbestos abatement protocol…..and if you’re not sure, get it tested. Be safe. Be smart.

“Living with Emptiness” – Robert’s Story

Submitted by: Nicola, Daughter (unedited)

Location: UK

Diagnosis: Malignant Pleural Mesothelioma

1944 - 2012

Asbestos has changed our lives so much in just 3 years. Nobody understands it until they have faced it in their family. I am an only child born later in life to my Mum & Dad, married for 16 years before I came along. I lost my Mum at 17 years old and it was just me and Dad for a long time. That in itself makes a bond a lot closer. I married my wonderful husband in 2009 (picture above: Dad on left with red shirt from our Reception, with friends for over 40 years) and the 3 of us lived together as an extended family in my original family home.

The plan was that my Dad was going to be a ‘hands on Granddad’, which happened very quickly just into a month of Wedded bliss. My Dad was elated and so looking forward to it all. To be honest, my Dad was only existing when my Mum died and had really struggled with life from then on. When I got married, my Dad had this new found love of life and really had began to live again, after 11 years of grieving my Mum. I was 8 months pregnant when the first tests for Mesothelioma were taken place, and the day my Dad received his negative results was the 4th August 2010. A day I will never forget, the day my son was born.

Unimaginable really, and all in one day. We lived a normal family life for 11 weeks, before the dreaded positive result of Mesothelioma. Asbestos has taken my son’s doting grandad from him, and also left me with no Mum & Dad at the age of 31 years. I never thought life could be so cruel. Of course, I love my husband dearly but there is an emptiness from where my parents should be.

I looked after my Dad for the 1 year 5 months of his life, and the toll this took on me was devasting. The pain and suffering was hard to watch and he never gave up the fight. Always trying to beat it. I lost my job through ill health because I was too ill to return to work, we are currently fighting through Employment Laws.

All this, and the only reason for it is Asbestos. I hate it, and will for the rest of my life. The plan for the future is awareness – what else can we do? It won’t bring him back, but may help someone in the future.

And as for the blood money, it will never ever be enough for a life. Easiest way to explain it is “lost a million, won a tenner!” This is our story of Mesothelioma.

“Chemo Roller Coaster”

– Rod’s

Story

Country: Australia

Diagnosis: Mesothelioma

Born 1961

My mother died from mesothelioma in 2005 from exposure to asbestos at her workplace, a hardware store that specialized in asbestos products. So did 13 of her colleagues.

In 2017 I was also diagnosed with mesothelioma, most probably through contact with all the cheap asbestos products she could get from her workplace. My father built so much stuff from that crap.

I watched my mother die within 11 months of her diagnosis. She struggled with the treatment and could take no more. I’m very aware of the path that mesothelioma can take and I’m going to do everything I can to keep it at bay for as long as possible.

I’ve had two rounds of chemo and been on a clinical trial. I achieved moderate shrinkage from the first round of chemo, but the tumours quickly grew back (within a couple of months). This required more chemo and currently the tumours are now back to their smallest size (albeit still quite large). I think I may be on the chemo roller coaster for a while.

I’m a strong believer in that taking the initiative and a positive attitude, but remaining pragmatic about your options. Being on the front foot is essential to achieve the best possible outcomes.

You can read more about my story at www.mevmeso.wordpress.com.

“Fighting This Disease with Everything He Has” – Roland’s Story

Submitted by: Kathryn, Wife (unedited)

Location: Canada

Diagnosis: Mesothelioma

1945 - 2013

My husband, Roland Freeman, was diagnosed with Peritoneal Mesothelioma in November of 2009.

I will never forget that day or where I was when I received the news. I always knew it was a possibility since he worked with asbestos, removing it from schools and hospitals for many years, but honestly never thought it would happen to him. Our lives are forever changed, for Roland, myself and our children.

Roland is now in the final stages and is becoming weaker and sicker every day. He is receiving palliative care and unable to walk or sit up on his own. He has fought this disease with everything he has and is the most courageous man I have ever known.

For anyone else who has been affected by asbestos, my prayers are with you.

"Art, Advocacy, and Action" 2022

“I Really Miss My Dad”

– Rudolph’s Story

Submitted by: Holly, Daughter (unedited)

Location: Pennsylvania

Diagnosis: Asbestosis

1932 - 2007

My handsome Dad started working at the age of 18. Dad was a laborer at the asbestos pipe plant in Ambler for Keasbey & Mattison (1951-1962 -except for his 2 years in the service in WW II) and then Certainteed (1962-1982), only being provided with a respirator at work during his last 15 years of employment.

He always came home with dust on his work clothing, so my Mother, my brother and I were all exposed. Every March, he had a full physical and chest xrays as required by his employer.

He was in tremendous pain in his abdomen and he suffered awfully.

I really miss my Dad.

“Our Lives Will Never Be The Same” – Rudy’s Story

Submitted by: Teresa, Wife (unedited)

Location: New Jersey

Diagnosis: Mesothelioma

1955 - 2012

After watching my husband of over 30 years suffer and lose his fight to this horrible disease, mine and my two sons’ lives will never be the same.

We deal with the vivid memories of what Mesothelioma had done to our healthy, happy, wonderful and loving husband and father everyday…

“Rudy Doesn’t Live Here Anymore…” – Rudy’s Story

Submitted by: Annemarie, Daughter (unedited)

Location: Canada

Diagnosis: Mesothelioma

1931 - 2004

Rudy or “Rooster” as his nickname was… He was delivered by his grandmother Deliah, the local midwife, in Nesterville and grew up in Northern Ontario in a French Canadian family of 9. In his childhood he was called ‘Petou’. As a man, he became a pipefitter and steam-fitter by trade. He married my mother Carol July 4 1959 and in January 1962, I was born. I loved my Daddy. He took me hunting and fishing and ski-dooing. He also always said how he loved he was Canadian and loved Canada. He taught me to swim at age 3. I was always his ‘Pumpkin.’

Many times when I needed help or advice, he was there. I still hear his words echo in my mind. He loved our family with his whole heart. He was a great helper of others too. He was a member of AA for over 40 years. At his funeral, many came to me and said, “If it wasn’t for your Dad, I’d be dead”…pathetic isn’t it? Anyways, after what appeared to be a very bad lingering chest cold in 2004, he managed to get to his doctor to refer him to a specialist. I came down for his appointment in September and there it was – Pleural Mesothelioma. Never heard of it. I asked what were the treatment options? Bluntly, I was told there was none – life expectancy 3-6 months. 3 weeks later, this once vibrant, strong man, now shriveled, succumbed to death. I have never seen anything like it. You slowly suffocate to death. You can breathe in (a little) but not out. Those last few moments with our family surrounding him were bittersweet.

Extreme anguish that you are losing your loved one but grateful that this torture chamber of existence was ending.

Unimaginable pain…unimaginable pain…

“He Has a Place in Heaven”

– Russell’s

Story

Submitted by: Russell’s Grandchild (unedited)

State: Michigan

Diagnosis: Mesothelioma

Born 1909

My Grandfather lost his life due to exposure of asbestos in his workplace. He fought very hard to live, right up to the end.

Little knowledge of Mesothelioma existed then. it would take years of medical records, scans and work colleagues who were diagnosed with the same disease to link the two together.

I believe the love he had for his 5 Grandchildren, Farming and his Church built on his property kept him alive as long as long as it did. He was a wonderful, generous person and we were fortunate to live next door and had daily interaction with him. The love of Farming, country and tractors are in our blood.

We were absolutely devastated when he succumbed to this evil disease, I speak for my 4 brothers as well. He was robbed of our Graduations, marriages, Great grandchildren and more importantly his “golden years” of retirement. I am active in speaking out and trying to make individuals aware of the dangers of asbestos.

With it’s direct, proven linkage to certain cancers, it needs to be totally abolished. Companies, workplaces, and Schools should be held responsible for not complying to remove asbestos and knowingly exposing others. I still miss him to this day and believe to the fullest, that he has a place in Heaven.

“I

Try to Appreciate Life More” – Sally’s Story

Location: Kansas

Diagnosis: Mesothelioma

Born 1960

In February of 2015 I was a normal person just going about the business of living. After experiencing shortness of breath I went to the doctors and after many tests was diagnosed with malignant pleural mesothelioma.

To say the least this was devastating news and I was absolutely terrified. Luckily I was blessed with great doctors and was referred to Dr. Sugarbaker in Houston. After many more tests, it was determined that I was a candidate for the surgery to remove my pleura, half my diaphragm and part of my pericardium. I underwent surgery in Houston in April of 2015. I also had 4 rounds of chemo. I am, so far, cancer free.

My life has changed in so many ways -both good and bad. I still have pain, my endurance is not where it used to be and I require a lot more sleep. But my outlook for long term survival is excellent. I try to appreciate life more. My relationships with friends, children and my husband have grown closer.

I thank God every day for a quick diagnosis and the expertise of many doctors. I realized during my illness and recovery how blessed I was to be surrounded by so many good friends and a loving family.

I only hope I will be able to help others by sharing my story.

“Someone Pulled the Emergency Brake!”

– Sara’s Story

Location: France

Diagnosis: Mesothelioma

Born 1967

How has asbestos changed my life in a sentence?

“Someone pulled the emergency brake!”.

Life as I knew it came to a screeching halt the day I was told I had mesothelioma.

My immediate fear was for my family.

How would my boys, my husband cope with this tragic news?

How could I protect them from the pain and terror of such a diagnosis?

Shock turned to fear and then to despair.

Life for all of us will never be the same. Now that my initial treatment is behind us, we’ve learned to live with uncertainty and cherish each and every day.

“Living For My Family” – Sarah’s Story

Location: Texas

Diagnosis: Mesothelioma

Born 1995

Being diagnosed at the age of 19 with Plural Mesothelioma has changed my life more than words can say…

I’m a young mother and wife, and all I can think about is living for my family. We are still searching of how I came up with this horrible disease. We have some ideas…

When I was a small child I would play in a old box car, My dad worked in construction, Some ASID schools may have contained Asbestos.

The scary thing you never know what places may contain the devil.

I will not let Mesothelioma control my life, I have very high hope and faith. I feel great. I fight for my family and will win this fight.

“A Story No One Should Ever Have to Tell” – Selina's Story

Submitted by: Pamela, Daughter (unedited)

Location: California

Diagnosis: Mesothelioma

1929 - 1986

This is Selina's story of asbestos. No matter how many years pass it will always be a very difficult story to tell. We lost a sweet and loving spirit. She looked for the good in everything and everyone. And had a way of finding happiness from even the simplest of things in life. The details may fade, but the pain always feels as strong as if it were yesterday.

Ironically, when asbestos came for my mother she had really just begun her life anew. She had worked hard her whole life and her life had been hard, but she was strong and never gave up. After raising 8 children, she was finally starting to do things for herself. She had experienced some health problems, but all were attributed to age or stress. Then one day she bent over and was overcome by extreme chest pain. Pleurisy was the initial diagnosis. But, when the pleurisy wouldn't relent, it quickly became evident that there was something underlying. It wasn't long before we heard “Mesothelioma” for the first time. Our father worked in a shipyard; late50's-mid-60's. His clothing was covered with the white dust and she did the wash.

The gravity of her situation led her to UCLA for surgery to remove the lining around the lungs and heart. Sadly, in less than a year the cancer began to spread even more rapidly. Tumors on her tongue, making it difficult to speak, and near her ear. She was in extreme and unbearable pain. She chose to stay at home with her family for her final days. She fought hard and held on for one last family Thanksgiving.

This is a story no daughter should ever have to tell. It is a story no one should ever have to tell.

“Continue on Each Day” – Shirley’s Story

Submitted by: Jenny, Daughter

Location: California

Diagnosis: Mesothelioma

1957 - 2015

Asbestos has changed my life by taking my mom from me and my family. My family and I were robbed of having my mother there for all the different milestones and memories that are still to come.

My kids have to learn how to live without their grandma, someone who has been there since they were born and was a very huge, important part of their life.

(unedited)

The cancer that asbestos causes is something that could have been prevented; instead it’s killing people and breaking the hearts of families all over the world. This devastation has brought me into a community of amazing, strong and dedicated people.

God has shown me along with these people how to remain strong during my loss and continue on each day. I will miss my mom for the rest of my life and a piece of my heart will forever be missing.

“Asbestos is Not Only Bad for You, It Kills You! “ - Smoe's

Submitted by: Suzanne, Wife (unedited)

State: Iowa

Diagnosis: Mesothelioma

Born 1967

Story

It has now threatened mine and my son’s health. I go every two months for a CT scan due to the exposure from riding to and from work, and beating clothes that were full of fibers before washing. The doctors in Chicago recommended this. My son goes once a year at this point due to his young age. My husband suffered horribly. He had an artificial diaphragm and an EPP done in Chicago but it was little help. He lived only a few weeks after the procedure that was rated for him as a 50/50 chance of survival. Due to the other lung filling up quickly and the cancer spreading so fast I had to tie him in a chair 24/7 sitting straight up so he didn’t suffocate. I have seen many cancer victims suffer but nothing could have prepared me for what he was to go through.

I read 40000 pages of discovery from the corporation where he was exposed and they know of 2700 known sites for many years and never marked them as danger – asbestos or notified employees. That company did not even follow their own corporate standards and procedures even after then knew that many people were exposed. I find this all senseless and am hoping to find some good out of his horrible suffering and ensure that others are made aware of the dangers. My son misses his father terribly as do I. No father at graduation, or when he will get married and have children. I miss him terribly.

In my husband’s honor I started the Smoe Prymek Asbestos Awareness Scholarship Foundation for high school graduates This is the third year it has been offered and there were ten applicants all with excellent fact filled essays about asbestos and the dangers of exposure. I know at least this year there are ten different seniors that are aware of the dangers and hopefully spread the word to others who may not understand – asbestos is not only bad for you it kills you! I have to think this happened to us for some reason other than corporate greed. That it is my mission to make sure awareness is spread to everyone!

“An Expectation of Justice” – Stan’s Story

Submitted by: Ann, Daughter (unedited)

Location: Oregon

Diagnosis: Mesothelioma

1929 - 1982

Losing my Dad to this horrible, preventable disease has caused me to continue to grieve his death from asbestos throughout my adult life.

Injustice is a constant distraction, and always the perpetuating questions lurk regarding the question… why. Why did he have to die this way, why does anybody have to suffer and die from this disease, why the injustice continues.

Other questions are; Will I experience the same suffering at the end of my life as my father did, due to my secondary exposure, he came home with asbestos on his clothes. Is that cough I might get with a cold, just a virus, or is it my time? Asbestos became a reminder of my own mortality at a young age, I was 22 years old when my Dad was diagnosed with mesothelioma.

Through the opportunity to volunteer and support others through ADAO, I ask “why” less, and now advocate to know “when” better treatments will be developed for asbestos diseases, and ultimately a cure, the end all cure for the future is a ban of the use of asbestos, I hope to see it in my lifetime.

To sum it all up, now I carry in my heart, an expectation of justice…

“The King of Cool” – Steve McQueen's Story

Submitted by: Barbara, Wife (unedited)

Location: Idaho

Diagnosis: Pleural Mesothelioma

1930 - 1980

It robbed me of my life and future with my husband and took away an icon beloved by millions around the world. Losing my soul mate to a deadly and preventable disease leaves me feeling blank. Steve came into my life when I just turned 24, and it was love at first sight. Those were truly the most amazing years of my life. They were filled with laughter, tender moments, great adventure, and away from the public spotlight.

Thank goodness for the latter, because when Steve was diagnosed with mesothelioma, it was not pretty or dignified.

We believe Steve was first exposed to cancer in the late ‘40s while working at the Washington D.C. Naval Yard, removing asbestos-filled insulation from the hold of a ship. Thirty years later, he was diagnosed with mesothelioma – a horrible disease.

Even worse than the diagnosis was the prognosis: I was told that his cancer was progressing at an advanced rate and that I should prepare for the inevitable. That’s something a young bride should never have to hear.

My youth and Steve’s desperation played a vital part in his decision to seek treatment in Mexico. He allowed himself to be poked, prodded, pricked, and examined on a daily basis. It was heartbreaking and a horrifying experience to have to watch Steve go through this.

Steve’s story is like so many who came before him and continue to make acting their dream; a small-town, All-American boy who overcomes

adversity and rises to global prominence as a famous actor. Steve lived every day like it was his last and was so fond of living his life through his saying of “when I believe in something, I fight like hell for it.” That is how I, and so many others, feel about the fight against asbestos. We must continue to fight against its production and use, in the United States and abroad.

I still think about Steve every day, and there is so much unfinished business we have together, even after all these years. Mesothelioma stole our life together, and it is my wish that we can make deaths like Steve’s an ugly footnote in history.

There is no need for asbestos in our world at all.

“The Road to Recovery” – Steve’s Story

Submitted by: Anne, Wife (unedited)

Location: Oregon

Diagnosis: Mesothelioma

1957 - 2016

This is totally new to us so it is just a shock right now but we are hoping they got the tumors and we are on the road to recovery!

So far, we are hoping to resume our normal lives.

“Mesothelioma Can’t Take That Away” – Steve’s Story

Submitted by: Gail, Wife (unedited)

Location: Australia

Diagnosis: Mesothelioma

1946 - 2013

My darling husband Steve was a gorgeous, larger than life, gregarious, loving, laughing, hardworking IT professional who loved life and lived it to the fullest. I met Steve here on the Gold Coast in 1984. We soon fell in love – I never could resist his huge cheeky smile – and were married in 1986 and daughter Fiona became my daughter too. We both shared a passion for sailing our yacht “Dream Hunter”, skiing, hiking and travelling. We lived overseas for a couple of years (in Sweden and New Zealand) and travelled to many parts of the world together…

Our beautiful life was utterly shattered on March 28, 2012 – the day Steve’s thoracic surgeon uttered those fateful words “I’m so sorry Mr. Cook – the histology shows Mesothelioma”. We now faced such a short time together and all our hopes and dreams for our future together were just… gone.

Between bouts of chemo and after recovery from his many surgeries, we lived our lives to the fullest. I always tried to give him something to look forward to. So we traveled, we skied, we sailed, we renovated our home and we shared amazing times with those closest to us. We didn’t waste a minute.

Throughout his battle, Steve showed us all his incredible strength. He was so courageous, he fought so bravely. He could always find a great big smile… no matter what. I’m sure he had no idea how much his positive attitude inspired everyone around him. He touched the hearts of his friends and family at home and around the world.

I am so proud of him, and I feel so privileged to have shared my life with him. I miss him every minute of every day and am so, so sad to be facing the rest of my life without my gorgeous guy. I loved Steve from the moment I met him and I will love him forever. Even bloody Mesothelioma can’t take that away.

“Doing Something Positive” – Steve’s Story

Submitted by: Linda, Wife (unedited)

Country: UK

Diagnosis: Mesothelioma

1947 - 2016

Long before Steve was born, his father was exposed to asbestos dust when he worked in the Bristol shipyards. Steve’s dad was diagnosed with mesothelioma soon after retiring and died about a year later. As a result, unlike many mesothelioma victims, we were familiar with disease and under no illusion about what the future held when history repeated itself in June 2009, as Steve was told he had the same disease that killed his father.

I still vividly recall how it felt to hear that devastating news and the overwhelming roller coaster of emotions that followed – disbelief, anger, fear, numbness, helplessness, hopelessness and grief as we looked into the future and saw nothing but a black hole. Although we had decided to be open about Steve’s condition, I found it very difficult to talk about it, with tears welling up in my eyes and a lump in my throat. I poured out my emotions in an e-mail to a friend and it was like opening a release valve. I felt so much better afterwards. It was her idea to write a blog and I’ve been doing it ever since to keep family and friends informed of Steve’s progress, raise awareness and share our experiences in the hope that it will help others going through the same thing.

I won’t pretend that those initial negative feelings have ever really gone away – there are still there, lurking below the surface and they occasionally bubble up when we go through a bad patch, or an innocent incident becomes a trigger for the emotions to erupt. However, looking back at the blog, it was surprising how quickly our attitude and outlook changed to

something more positive.

Scouring the internet for information, we soon discovered Graham Sherlock Brown’s PETAL philosophy for living with mesothelioma, which I would recommend to anyone! Through a press cutting sent by a friend, we made contact with Debbie Brewer, a fellow mesothelioma sufferer in Plymouth UK, and were buoyed along by her zest for life. Debbie introduced us to the Meso Warriors on Facebook, who have been a huge support and a mine of information. Through this network we began to appreciate the scale and global impact of asbestos on the lives of innocent people, their families and friends.

Once diagnosed, Steve’s medical team acted swiftly. Within a week, a treatment plan was in place. Two weeks later he started a course of radiotherapy to zap the “ports” where the chest drains had been inserted during his pleurodesis operation, so as to minimize the risk of the cancer seeding in these vulnerable areas. He was offered and accepted a place on a drug trial (a combination of cisplatin and Velcade, a biological therapy which inhibits cancer growth) and began the first of six cycles of treatment just three weeks after diagnosis.

It was a grueling three weekly schedule – hospital twice a week for two weeks, followed by a rest in week 3 which included returning to hospital for a scan every other cycle. In spite of the side effects of chemotherapy –fatigue, nausea, occasional vomiting, increasing peripheral neuropathy (numbness in fingers and toes) – we got out and about at every opportunity, making the most of good weather, enjoying the small pleasures of life and catching up with family and friends as often as possible, with Steve pacing himself and resting whenever necessary. We began to understand that it’s possible to live with mesothelioma, rather than die because of it.

We had been hoping that Steve’s mesothelioma would shrink as a result of the treatment, so I admit we were disappointed when there was no change at the end of six cycles of treatment. He was booked in for an assessment every three months thereafter to monitoring his condition. And three months later, there was still no change. And no change three months after that, and again no change three months later….and so it went on. We realized that stable is GOOD.

As I write, Steve’s next assessment is in mid-June 2012, almost three years to the day since he was first diagnosed. As always, we will be hoping for good news, but mentally preparing ourselves in case it’s not. This is how we live our lives now – we rarely commit ourselves to anything important beyond the date of Steve’s next assessment. However, once the assessment hurdle is passed, there’s no holding us back.

In the last three years or so, we have traveled widely in the UK and Europe finally seeing those places we had planned to visit “one day”. After years of promising to be more sociable but not quite making it, we have enjoyed visiting friends, having people visit us and organizing social gatherings. In the “old days” we might have hesitated about doing something new. These days, if offered the opportunity, the answer is usually yes, provided we can fit it in before Steve’s next assessment. Hotair ballooning; Steve at the controls, looping the loop in a Chipmunk airplane; dancing over the waves on a high speed boat; trying our hands at clay pigeon shooting; going to a classic horse race, international rugby matches, festivals of speed, exhibitions, theatre trips….Enjoying life to the full, together, while Steve is still able to do so.

When Steve was first diagnosed with mesothelioma, I wondered whether he would still be alive for some important milestones in our lives –significant events like our daughter’s 21st birthday, our son’s 30th birthday; both of us reaching state “retirement” age – even though we are more active now than pre-diagnosis! He has been there to enjoy all of them so far. The next big milestone is our 40th wedding anniversary, less than three weeks away as I write. Another milestone within our grasp!

We know that this state of affairs won’t last forever and times will get very tough indeed. However, when that day comes, we will have some wonderful experiences in the memory bank to look back on and enjoy, and we know there is a community of real and virtual friends who will be there for us, whenever we need them.

Things have changed so much for the better since Steve’s father was diagnosed with mesothelioma 20 years ago. We can only hope that there will be a medical breakthrough in the next 20 years, the sooner the better, for those whose mesothelioma journey has already begun, although it may be decades before they become aware of their condition. We also hope that during this time there will be a global ban on the manufacture, import, export and use of asbestos, and that the world will wake up to the threat from the asbestos that’s already woven into the fabric of our daily lives and take this threat seriously.

We owe this much to the victims who have gone before and those who are now fighting for their lives. We send our love to each and every one of you.

You can read more on http://doingsomethingpositive.blogspot.com/

“Companies Chose Corporate Greed Over People’s Lives” – Steven’s Story

Submitted by: Julie, Wife (unedited)

Location: Indiana

Diagnosis: Mesothelioma

1961 - 2018

My husband recently died at the age of 56.

On his death certificate it was written “Cause of Death-metastatic mesothelioma”. It was also written for his manner of death “Natural Causes”. I’m having a hard time dealing with the fact that it says “natural causes” when the actual cause was due to asbestos exposure.

Asbestos is a product that the companies knew was dangerous and chose to continue using. My husband’s exposure took place when he was in his teens and early adulthood; changing brake pads on vehicles was something all teens did at the time. His exposure was a little more due to the fact his parents owned a used car lot. However, my husband’s exposure to asbestos was in the 70s, but these companies knew about the dangers in the 50s long before my husband was even born.

All of these companies were recommended to remove the asbestos from their products or label their products with a warning about the link between Asbestos and mesothelioma. These companies chose to continue using asbestos, and not issue a public warning about the dangers and/or death. Therefore, my husband’s death should be considered murder, not natural causes. They knew the material was dangerous and would be fatal and yet they chose to ignore it and pay death benefits rather than stop using asbestos.

These companies chose corporate greed over people’s lives; that is murder. We have waited long enough for the companies to do the right thing-they chose not to. I am to the point where I honestly believe the only way we are going to protect our future generations from this dangerous material and the resulting terrible diseases is to hit these companies with what matters most to them- their bottom line. I honestly believe that every victim and victim’s family must file lawsuits.

We have to make these companies answer for what they’ve done to us, our family members. We can’t hide anymore. We have to make sure asbestos is banned in the US. Banning asbestos is the only way we will ever stop the senseless deaths.

“Weapon of Asbestos” - Steven's

Story

Location: Ohio

Diagnosis: Mesothelioma

1952 - 2014

My dad was murder by the weapon of asbestos by the hands and authority of greed.

He will no longer be able to enjoy all the things he loved to do with his family.

Camp, fish, sports games, card games, board games, cornhole, but most important his presence is missed for his guidance and wisdom.

“A Deadly Workplace” – Subrayan’s Story

Submitted by: Subrayan’s Family (unedited)

Location: India

Diagnosis: N/A

Unknown - 2010

Subrayan started work in Gujarat Composite Cement Ltd on 1 March 1974. His routine job involved manually opening the plastic Asbestos Bag (Capacity 50 KG) and to put the asbestos in the mixing machine. He started experiencing breathing problems in 1995. He underwent a medical check-up through the ESI Panel Doctor who diagnosed the problem as TB and started his medication. The company closed down in 1995 but restarted its operations in 1999 where in Subrayan was placed in the sheet cutting division. He worked till 2005 when the company because of his deteriorating health condition compelled him to take voluntary retirement. He then vacated his home in East Digvijat Nagar and shifted to Meghani Nagar. During his entire career in the company, he was never told about the hazards of the substance he was working with nor was he provided with a correct medical diagnosis and treatment. He experienced many difficulties in his new place. he did not have any income or job. The family used to survive on the money received through the pension fund and his wife used to do manual work in near by homes and earn about Rs 1000 per month. In July 2007 his health deterieated and was admitted in the Civil Hospital. However there was no improvement in his condition and his case was referred to the Gujarat Cancer Research Institute on 13-8-2009. The cost of treatment here was very high. Due to lack of money an application was filed with the Local MLA Shri Pradeep Singh Jadeja for help. This was forwarded on 27-8-2009 to the Director Gujarat Cancer research Institute and hence the treatment started. After about a year on 9-7-2010 he died leaving behind his mother (68 years), wife (43 years old), Daughter (16 years – had to leave studies after matriculation), 2 sons (elder 14 years –had to leave studies after 9 class, younger 11 years studies in 6th class). Today his wife and elder son have a food stall using which they sell food to different area to earn their livelihood and support the family.

“Too Late to Save My Mum” –

Sue’s Story

Submitted by: Lucie, Daughter (unedited)

Location: UK

Diagnosis: Mesothelioma

1948 - 2016

Mum has always been the centre of our family.

Everyone remembers Mums kindness and generosity, her house was always open and there was always room for one more at the table. She had an incredible way with children, particularly young children.

Over 30 years in the classroom she taught almost 900 four-, five- and six-year-olds. She always said her job was to make children love to come to school, to be curious about the world and confident in themselves.

Mum was so excited about her three grandchildren and they adored her.

It’s heartbreaking to think that they have had so little time with her. We are so angry that 7 million school children in the UK are sitting in asbestos schools today. Parents and teachers are being kept in the dark and it’s costing lives.

It is too late to save my Mum but I promised her that I would do my best to make sure no-one else had to suffer like she did so we started a petition to get asbestos removed from all UK schools by 2028.

Please sign her Protect Our Children and Teachers from Asbestos Exposure at School petition.

“The Search for Treatment” – Tamblea's Story

Location: Georgia

Diagnosis: Mesothelioma

Born 1963

Tammy Frank and her husband Mike are two young entrepreneurs from Acworth, Georgia who have been married for fourteen years and are the proud parents of two wonderful children, Jacqueline who is 13 and George, age 10. They are a tightly knit family who at one time enjoyed camping and trips to the ocean. They are also a family with deep religious beliefs, which at this time is very crucial to their current situation. You see, Tammy was diagnosed with peritoneal mesothelioma in November of 2000.

It all began in January 1999, when Tammy began to experience severe abdominal pains that subsequently lead her to the local emergency room on two separate occasions. However, it wasn’t until November 2000 when she again sought medical attention for the same pain that her physician discovered she had what was thought to be an ovarian cyst. Tammy was referred to a gynecologist whom she saw the next day. The gynecologist told Tammy she needed to have surgery immediately.

On November 21, 2000, Tammy was to undergo a diagnostic laparoscopy, but when they attempted entry through her naval, they immediately discovered: omental adhesions to the anterior abdominal wall, all the way from the umbilicus into the pelvis. She had extensive scar tissue down in the pelvis which required a laparotomy in order to dissect the tubes and ovaries off the colon. The right ovary had some small excrescences on it. The tube on that side was adhered to the ovary. Both of these were adhered to the colon. She had a large left hydrosalpinx which was also stuck to her colon.

What began as a minor procedure immediately turned into a full-blown invasive surgery to remove pelvic mass, rupture and clean adhesions attached throughout her pelvis and colon, and dissect her fallopian tubes and ovaries off the colon. Six specimens were taken and sent to the Mayo Clinic Pathology. Each specimen revealed Tammy Frank had Malignant Mesothelioma of Epithelial Type. The horror of hearing her diagnosis was only matched by what was next revealed.

THE SEARCH FOR TREATMENT

Tammy’s doctor was unable to locate a physician in the entire state of Georgia who specialized in the treatment of mesothelioma so she was referred to a doctor at the Southeastern Oncology and Gynecology in Atlanta. He is treating Tammy as though she has ovarian cancer. He told her she was lucky they had caught her mesothelioma in its early stage and that her chances for survival were good. Tammy began chemotherapy treatments in December which consisted of paclitaxel (Taxol) combined with Carboplatin and administered once every three weeks.

She experienced hair loss, nausea, vomiting and weight loss of 20 pounds. In January 2000, Tammy underwent another explorative procedure using a scope to determine whether the chemotherapy was working. It was then they found mesothelium on the liver, skin lining and her large intestine. The procedure was followed by three more chemotherapy treatments through a port she had installed in February.

“Grateful That I’m Alive”

– Tamron’s Story

Location: Florida

Diagnosis: Peritoneal Mesothelioma

Born 1986

Asbestos has definitely changed my life in a major way. To be honest I had never heard of asbestos until the year of 2007 when I was diagnosed with peritoneal mesothelioma at the young age of 21.

Did I mention I was pregnant while I had this cancer but I was misdiagnosed? Initially I was told I had a fibroid tumor, but in turn it was peritoneal Mesothelioma. After I had my son I had the HIPEC surgery which is an aggressive form of treatment for peritoneal mesothelioma.

So the question how has asbestos changed my life? It gave me peritoneal Mesothelioma! Getting more clarity about what mesothelioma is gave me a sense of relief about the thoughts that I had thinking that my body created this cancer out of nowhere. I contracted this cancer from something in particular – asbestos. My next thoughts were, “Well, what in the world is asbestos, and when was I around it?”

Till this day I still don’t know the exact moment I was in contact with it.

I’m just grateful that I’m alive and well and can share my story with the world!

“My Body Is In Conflict with My Spirit” – Tasha’s Story

Location: Tennessee

Diagnosis: Mesothelioma

Born 1970

Asbestos has stolen my quality of life from me. It feels like without your health, nothing else matters much. Because of asbestos, my children and I suffer from PTSD due to the fact that it almost killed me.

I was diagnosed with Peritoneal Mesothelioma in 2008 after 5 years of going from doctor to doctor and being told I was healthy. My cancer never showed up in any scan or blood test. I had heavy chemo treatments and a total of nine surgeries. The road has been long and hard, but I am in remission though the chemotherapy has done great damage to my body.

Nine years later, I wake up each morning feeling like I have a horrible hangover. As soon as my eyes open, regret doing so, bracing myself to push my broken body to make it through the day. I am wet from sweating all night and begin shivering from the cold my body feels. My head pounds and my mouth is dry. My temples throb and my neck and jaw feel like they have been beaten by a hammer. I feel nauseous and begin wondering whether or not I’m going to vomit. I feel too bad to get up to go to the bathroom and fear I will need to get sick on the blankets. My abdomen is distended and bloated until it feels like it may pop. I know I need to go to the bathroom but also know that my twisted intestines won’t allow that to happen. My skin feels sunburned and hurts against the blankets. My joints ache and throb. My muscles are screaming for help all over my body, and my body hurts right down to my bones.

I begin to worry as I always do. How much longer can this go on? It’s been nine years of this, day in and day out. My digestive system is all but

shut down and functions properly maybe once a week. Since my diagnosis, I have spent most of my life in bed, and on better days I am able to be up and about, smiling and laughing, but all the while, I am hiding a tremendous amount of pain. My chemo-damaged bladder suffers recurring infections, and I feel terrible pain in my pelvic area most of the time. I am so weak from not being out of bed that I wobble and shake when I walk.

I feel ninety years old (I am forty-five) as I go up and down stairs as my joints creak and ache. It is rare that I can make plans because I usually have to cancel. But, still, there are those weird weeks in between when I may even get three “good” days in a row and can get out of the house. I cherish those times. I can’t get the house clean or put dinner on the table, and going to the grocery store is a challenge.

Despite all of this, the one thing asbestos couldn’t take from me is my spirit to live and fight this terrible illness. My connection to the Lord, my husband, and my three daughters is what gets me through the day and makes it bearable to go on and face another day. My body is in conflict with my spirit, and I push each day to align them.

My amazing friends are having a fund raiser for me in order for me to get cell regeneration treatment.

“Diagnosed at 14 Years Old” – Terran’s Story

Submitted by: Terrance, Father (unedited)

Location: South Carolina

Diagnosis: Mesothelioma

Born 1999

Mesothelioma has changed our lives. Being parents, you would have never thought of your child having this type of cancer.

My daughter is a very rare case. Being diagnosed at 14 years old, having been through two types of chemo, having a 12-hour surgery to remove the mass from her mid-section has been a trial. But she has proven to us and to herself that her faith and her desire to live and to do well has kept her going this far.

She is now 16 years old, in school as a thriving Junior. Everything we did before had to change to take care of our daughter.

She is a blessing to us and she will beat this awful cancer.

“He

Was In A Lot Of Pain” – Thomas’ Story

Submitted by: Amanda, Daughter (unedited)

Location: Florida

Diagnosis: Mesothelioma

1949 - 2018

My dad worked in the mine for 31 years and was exposed all the time.

He brought the dust particles home with him and exposed his children to it. I’ve had surgery on my neck thinking that I had Sarcoidosis also.

My father was diagnosed in September 2018 and passed away 2 months later.

He was in a lot of pain and deteriorated quickly.

“High Amounts of Asbestos” – Tim's Story

Location: California

Diagnosis: Asbestosis

Born 1946

Unfortunately, due to multiple careers and environmental factors, I was exposed to asbestos many times throughout my life.

In the late 60s through the 70s, I worked in environments containing high amounts of asbestos — first, I was in the Navy and was exposed to asbestos while on a training cruise aboard a WWII destroyer.

Later, I was an installer for Executone of Western Mich, Inc. Many of those factories had asbestos-wrapped steam pipes, and part of my job was to crawl around in ceilings and rafters, where I would ultimately disturb the wrap on those pipes.

After that, I was exposed through the use of an asbestos-laden drywall compound in my remodeling business. Looking back, I have been waiting for this shoe to drop most of my life. I was finally given a CT recently and it revealed asbestos.

Now, I am very concerned for the quality of the rest of my life.

“I

Was Given a Second Chance for the Purpose of Helping Others Through this Horrible Unnecessary Cancer”

– Tina’s Story

Location: West Virginia

Diagnosis: Mesothelioma

Born 1966

In 2009, 2 weeks before Christmas, our lives changed forever. I was first diagnosed with ovarian cancer and the doctor told me that it didn’t look good and said, while I was alone in the hospital, that I had 6 months to a year to live. I prayed all that night and God spoke to me “you need only to be still, I will fight for you…” Later I learned Exodus 13:13

I told my family and the doctor that I would not do his treatments, they all told me that I was in denial. I saw 3 more oncologists and got a second opinion on my pathology and learned that it was mesothelioma of the peritoneum which is the lining in your abdomen that holds all of your organs in place. I also learned if I would have followed the first doctor’s treatments it would have killed me because it was the wrong concoction for this type of cancer.

I am now being treated by Dr. Alexander at the University of Maryland medical center. In May of 2010 he operated on me, opened up my abdomen removed my peritoneum, omentum and spleen. He then poured hot chemo in my abdomen, it was an 8 1/2-hour surgery, I had 57 staples up my abdomen, it now looks like a road map!!, I was in the hospital 11 days and have been cancer free since! I have to have scans every 6 months.

The anxiety is horrible! I now suffer with adhesion pain and back pain. Some days I think,” was it really worth it, I can’t take much more” but I know that I was given a second chance for the purpose of helping others thru this horrible unnecessary cancer.

Because of Dr. Alexander I got to celebrate my 25th wedding anniversary with my best friend and truly the love of my life.

I got to see my son go to college and I got to dance with him at his wedding!

I got to see my first grand baby be born and I get to see him grow up. I get to watch my son be a wonderful father to him.

I get to spend mother\daughter in law time together with my sweet loving daughter in law (she truly is like a daughter to me).

I get to live each day appreciating all that God has blessed me with!

Three things I want to leave you with.

1. Always trust your gut, its usually God telling you something is not right…

2. Go for different opinions until you feel in your gut that its the best treatment for you. Best to go to a bigger hospital where there is research being done.

3. And always live your life as if its your last day and love with no regrets!

"Our

“Our Unending Grief” – Todd's Story

Submitted

by: Todd’s Parents (unedited)

Location: Kentucky

Diagnosis: Mesothelioma

1967 - 2006

Asbestos has shaken our lives and changed it forever.

It has caused us to have the unending grief that all parents experience with the loss of a child.

The sense of loss is always present.

Todd speculated that his asbestos exposure was from the brake linings of his first old car when he was a teenager.

He put 5 sets of brakes on that 1978 Volkswagen Sirocco and was diagnosed with mesothelioma 20 years later. He could also have been exposed in an old school building. His elementary school was renovated while he attended.

He recalled sitting in an old gymnasium and absentmindedly picking insulation off an old pipe near the bleachers. That was asbestos.

We advocate for the ban of asbestos and mesothelioma awareness in our son’s memory.

In Todd’s memory, we urge Congress to ban asbestos.

“Life is Precious” – Tom's Story

Submitted by: Lisa, Wife (unedited)

Location: Florida

Diagnosis: Mesothelioma

1951 - 2013

Asbestos has changed my life forever as I lost the person I loved unconditionally in life.

I feel such profound sadness that I lost my dear husband and not a single day goes by that I don’t mourn his loss. Images of what he went through are etched in my mind.

He was such a positive person who lived every moment with joy and he never let the disease get him down. I wish I could say the same thing.

This disease has had such a devastating impact on everyone in our family and we will forever feel his loss and the love he shared with us.

I will love you forever Tom. You left a lasting legacy and your “teachings” are forever with us. We ALL love you so very much and miss you tremendously.

The title of this story are the words he said to me a week before he died which have stayed with me ever since.

“My One In A Million Dad”

– Tony’s Story

Submitted by: Gemma, Daughter

(unedited)

Location: Scotland

Diagnosis: Mesothelioma

1945 - 2016

My one in a million dad ❤

Consultants said my dad didn’t need to start chemo as he was doing very well, so for a while we all carried on, the day before my dad was due to start chemo his blood test results showed white blood platelets were very low, he got an infection was hospitalized, blood transfusions etc, so sadly my dad couldn’t receive any treatments (chemo) as was too weak.

I do wonder if he had started chemo when he was feeling ok, he might still be with us now, he was fine in August 2016 still playing golf and going fishing, but from end of august he declined rapidly and my dad lost his fight October 25th ❤ X this Christmas I donated what I would have spent on Christmas cards to mesothelioma and I shall do this every year from now on and I have plans on hosting a Mesothelioma coffee morning xxx

“The Devastating Consequences of Asbestos” – Tony’s Story

Submitted by: Tony’s Family (unedited)

Country: Australia

Diagnosis: Mesothelioma

1965 – 2008

Tony was a construction worker, OH&S officer, activist and community leader. Tony’s family migrated from Chile in 1977 post the military coup and military dictatorship, he often mentioned this period as being a formative one in developing his social awareness. One of his early jobs as a young man of 19 years of age was as an asbestos removalist and although he did this work for less than 12 months it was this early exposure to asbestos that would tragically claim his life to mesothelioma, a fatal asbestos related cancer two decades later.

Tony through his membership with the CFMEU (construction, forestry mining and energy union, formerly the BWIU) and as an organiser and OH&S rep lobbied hard along with other activists for industry changes to be made to the safe removal of asbestos code, striving for a “no safe level of exposure to asbestos” policy in the building industry. He was also an advocate for strong OH&S laws and the harmonising of these laws Australia wide and for employers to be legally accountable for worker deaths due to negligent work practices, these goals were achieved through strong and at times militant union action, something Tony was a believer in if necessary. Tony volunteered his time to the CFMEU as a trainer in the training unit, instructing construction workers and industry stakeholders in the safe removal of asbestos course.

Post his diagnosis of mesothelioma Tony along with activists travelled interstate to lobby Government and opposition ministers for the chemotherapy drug Alimta to be made available on the pharmaceutics benefit scheme, as the cost of this drug was beyond the financial means of most Australian asbestos sufferers. The media campaign also took the form of a photo postcard petition depicting Tony and his children and the

devastating consequences that this disease would have on them as a family. The campaign was successful and in 2008 was made available on the pharmaceuticals benefit scheme.

Tony was awarded a lifetime membership to the CFMEU in December 2008 for his tireless activism in the continual improvement of OH&S laws in and around building and construction industries. He’s story can also be seen in the Immigration Museums archives. His story is also told in Donna Jackson thought provoking and entertaining theatre production DUST based on asbestos and its impact on our culture.

Tony’s activism was not only limited to the building industry, he was a passionate humanist that saw him study in the former Soviet Union and participate in the rebuilding efforts of East Timor post the UN withdrawal. He was also a well-known and respected community leader of the Australian Chilean community, he also derived great pleasure as a soccer coach in seeing his Endeavour Hills under 14′s boys soccer team win the Premiership even as his body was ravaged by mesothelioma.

Tony’s infectious humour and charm coupled with a deep passion for people of all walks of life will ensure he will always be remembered for his inspiring ideals to improving people’s lives.

He continues to be remembered and mourned by family, friends and colleagues.

“Not Ready Yet” – Troi’s Story

Location: Oregon

Diagnosis: Mesothelioma

Born 1964

The very first record executive I ever met was in Seattle.

I had just had the opportunity to play with some really cool cats who were getting “signed”…

I was invited back to an office where upon entrance there was purchased upon a coffee table a science project volcano sized pile of cocaine. I immediately spun on my heels, hightailed to the elevator where my new girlfriend was waiting in her car for me. I said “baby I can’t do that I’ll be dead in 6 months”…

Why you may ask… because I was informed, I was 29. I knew what it would do to me. Yet day to day people go about their lives unconsciously touched by something so deadly that it stopped me in my tracks. Years later that girlfriend in the car became my wife. We spent years on the road playing music making our own way without the help of record executives & their bling. But years of shipyard work and a hard living rock & roll life forced a pit stop for me in Key West.

After days of complicated diagnosis, a nurse friend suggested that I have further testing done elsewhere and the hidden truth was discovered. Her information may have saved my life. All playing came to a stop; my family prayed. A month later after driving across country to rejoin our children, I had surgery and began treatment in California.

That was 1 &1/2 years ago; as of spring 2013 I have 99% oxygen saturation and no new re-growth. My growth thankfully turned out benign

and I begin a new journey to change everything about my life from the consumption level to the reflection & reaction level; it has all been vitally important to a solid recovery.

The level of support from a group such as ADAO is immeasurable; for the strength of a family member in need of support, to one-on-one dialog with other patients. The diligence ADAO spends getting current information out to the general public is beyond scope in its importance.

There is Hope in the collective and freedom in knowledge. It is my desire to live out my days however many they may be always with a song in my heart, shedding some light on the strong walk to our healthier future.

“Monster of a Disease”

– Vicki’s

Story

Location: Maryland

Diagnosis: Mesothelioma

Born 1952

“To all those affected by Asbestos – having this disease is through no fault of your own. As 63-year-old woman, I have always been a healthy person, by also growing my own vegetables, and watching the junk food consumption. I quit smoking 34 years ago when carrying my first child, and never went back to the cigarettes. When I went to my doctor with strange symptoms of back pain, and not breathing properly; you might as well had broadsided me in a car accident, when the final diagnosis was revealed to us. No one in the family or my closest friends could believe it.

My husband put much effort into taking the stress off me by communicating with doctors and trying to find the best treatment for this horrible disease. We cannot find many doctors experienced with Mesothelioma, which in itself is discouraging. Since my symptoms began, it has been non-stop doctor appointments, blood tests, PET scans, CT scans, chest x-rays, and draining fluid around my lungs every day.

Our days and nights consumed mentally. In addition to reading articles about Mesothelioma and the limitations of treatments, keeping a positive attitude can be challenging. The past year we had a grandson and another on the way! It is difficult not to think about not being around to see them grow, and watching my own children build their lives. My only hope is, if there is no distant future for myself, and then I pray that there is enough awareness about Asbestos that governments are forced to band this fiber from use; and more grants and fundraising become a reality for the benefit of science, health advocates, and nutrition experts to develop the best plan to destroy this monster of a disease.

It is now September 2016; I received the surgery of a PleurectomyDecortication of the right lung, received two chemo treatments, which I could not continue with the remaining two, as a total of four was recommended by my oncologist. The chemo treatments was so toxic to my body, I had to stop them. I was sent to the emergency unit at the hospital five times during the chemo treatments, due to dehydration and blood loss. I lost 20+ lbs. in three days at one time; a total of 30 lbs upon completion of the two treatments! The fear of forcing myself to get a third chemo treatment, I believe would have killed me.

With not many options, we had done much research, and inquiry about Integrative Medicine I was directed to Jefferson University’s Integrative Medicine Center – The Myrna-Brind Center for Integrative Medicine in Philadelphia, and their Brind-Marcus Integrative Medicine Center in Villanova, Pa, of which I am receiving treatment every other week for high dose Vitamin C Infusions. I started out twice/week, then once/week and am now starting every-other week for maintenance. In the past year, my CT scans of the lungs look clear, since the surgery, chemo and all the Vitamin C Infusions. My surgeon said my lungs look great! I feel pretty good and have returned to pretty much all my activities prior to the diagnosis.

I recommend all those who have been inflicted with Mesothelioma to look into Integrative Medicine as an alternative, or even your main option of treatment. Integrative Medicine is publishing more positive data on successes and is getting noticed by some of the medical industry who provides pharmaceutical standard-of-care treatments, by also offering Integrative Medicine in addition to Chemotherapy.

I am updating My Story because it would not be in the best interest of patents, and my conscience would be heavy if I did not share this with you.”

“This Stupid Cancer Took Her Life” – Vicky's Story

Submitted by: Abby, Daughter (unedited)

Location: Minnesota

Diagnosis: Mesothelioma

1961 - 2019

It has turned my mom’s and mine life upside down. My mom has suffered in pain for 6 years. She never complained though. We, me and my mom and my grandma, all moved out to Boston for a month and a half back in 2013. My mom had surgery to remove the cancer.

She was clear for 4 years. It then took her life in under 2 years.

We were told on June 26th she had to go into hospice because she had “months” and this stupid cancer took her life in 5 weeks.

I’m left with the house and bills I’m not sure how to pay. I am only 28 and I just it married and I’m very thankful she was able to walk me down the aisle on June 1st.

I thank her doctors for giving me those 6 years with her.

“Fallen Star” – Warren’s Story

Submitted by: Jordan, Son (unedited)

Location: California

Diagnosis: Pleural Mesothelioma

1947 - 2003

”My father, Warren Zevon, captured the hearts of millions of people around the world and irreversibly influenced music and entertainment.

He is a rock star, legend, and hero to many, but he was also a father, husband, son, and friend when he wasn’t in the spotlight. I have always admired my dad and he has shaped the person and artist that I have become, but he was stolen from this world by mesothelioma at 56, when I was only 34 years old.

While we cannot be sure where he was exposed to asbestos, I can be sure that my father needlessly died from a disease easily preventable if asbestos was banned and regulated in the United States.

My dad left many family members, friends, and fans behind when he was stolen from us, but his legacy will live on, and I hope that I can make him proud by fighting to prevent anyone from going through what he did.”

- Jordan Zevon

“I Once had it All, Now I am so Lost” – Wayne’s Story

Submitted by: Kathy, Wife (unedited)

Location: Texas

Diagnosis: Lung Cancer With Documented Asbestos Exposure

1962 - 2012

We were given a few short months to try to write the ending to our 33 yearlong “love at first sight” story that started when we were kids age 15.

We were always together, me sitting right up beside him in his truck holding his hand usually. This man who could do absolutely anything was reduced to having me carry him to and from bed to chair and restroom.

I’m still not sure how I physically did that.

The horrible fact is my husband is gone and the ones who are responsible are the companies who continue to mine and supply and use this deadly dust. In addition to the judges who have not taken a stand with the victims and their families like they would in any other crime in which someone lost their life at the hands or negligence of someone else.

I was robbed of everything that made me, me when I lost him and am faced with trying to figure out how to take care of myself and my family alone until I join him in heaven. I once had it all, now I am so lost. I would not wish this sad existence on anyone, ever.

He was 49 years young and I will miss and cry for him the rest of my life.

“Asbestos Has Turned Our World Upside Down” – Willard’s

Story

Submitted by: Anna, Wife (unedited)

Location: Illinois

Diagnosis: Mesothelioma

1964 - 2005

Has turned me and our kids’ world upside down by losing the best husband and father ever.

We miss him so much.

“For The Love of Money” – William's Story

Submitted by: Donna, Daughter (unedited)

Location: Alabama

Diagnosis: Mesothelioma

1931 - 2000

”For the LOVE of money is a root of all kinds of evil.” 1 Timothy 6:10

My dad, Bill Boone, died of Mesothelioma in June 2000 at 68 years of age. Other than this disease, which proved terminal for him, he was in perfect health.

He was enjoying life; riding his motorcycle, fishing with his 3 year old grandson and painting commissioned pieces of artwork. My dad was not overweight, he did not smoke, did not drink alcohol and did not take any medications. Unbeknownst to him, he had inhaled invisible asbestos fibers 35-50 years prior to actually having any symptoms of disease. My dad died just 7 months after receiving the shocking diagnosis of Mesothelioma.

My dad was an incredibly creative, funny and smart man who left us far too early. The good news is that asbestos related diseases are preventable.

Join us in the fight to BAN ASBESTOS in the U.S.!

“Praying for an Asbestos Ban” – William’s Story

Submitted by: Jackie, Wife (unedited)

Location: Canada

Diagnosis: Mesothelioma

1935 - 2008

It was March when Bill went to see the doctor. His shoulder had been bothering him since the fall.

An X-ray in December and another in January hadn’t shown any major problems. Now, the cat scan that Bill had a few days before gave the answer. He had pleural mesothelioma, with damage to the left ribs and lung and rapid progression. By the time he saw the specialist a week later, it was too late for chemo or any treatment. His time was limited. We were lucky that Bill could stay home, as he wanted to, for his final days. Two months later, in May, he passed away. He had good care, oxygen and necessary pain medications.

Bill had always watched out for me because of my arthritis problems. He dropped me at the doors of places so I wouldn’t have to walk far. He was conscious of me “not overdoing” things. Now I lost not only my dear husband of 47 years, my soul mate, my travel companion, but also now my greatest caregiver. I miss him every single day and there will always be an empty spot in my heart. Evenings are lonely. In our young days, when first married, we worked our way around the world, having jobs in Australia and New Zealand, riding camels in Egypt, hitchhiking and youth hostelling in Europe.

I have wonderful memories, but I miss the many more years we could have had together, had asbestos not come into the picture. Bill would be very proud of Leah and Stacy’s efforts, and their “Walk To Remember” in 2011 and 2012.

I pray that asbestos will soon be banned, so others can work safely and suffer less.

“Robbed of Many More Years” – William’s Story

Location: Canada

Diagnosis: Mesothelioma

1936 - 2008

March 8th, 2008 was the first time my sister, brother and I had ever heard the word mesothelioma. Our dad, who had suffered from a sore shoulder for a few months and had been to the chiropractor, physical therapy and physiotherapy was sent for a CT scan. Sometimes lung cancers can be present as a sore shoulder we learned.

Our dad, an electrician, had worked in areas with asbestos in the late 60s and early 70s. He was the epitome of good health until this. 2 months and 5 days later our dad passed away. We were told by doctors that it was the most painful cancer and so are grateful that he didn’t suffer long. We were able to fulfill his desire to stay at home until the end, with a nurse coming daily to check on him and monitor his painkillers.

Dad was only 72 and his own father had only died two years earlier in his nineties, so we felt robbed of many more years with him. Our mom is now in a study at Princess Margaret hospital in Toronto in an early detection program for mesothelioma. We can’t help but wonder if some day one of us may develop it as a result of playing with our dad when he got home from work with asbestos fibers on his clothes.

On October 1st my sister and I are planning a commemorative walk to honor Dad and the many other lives lost to asbestos and promote the end of Canadian asbestos production. The walk will be held in Sarnia, Ontario, home to many cases of asbestos-related diseases. All are welcome. Please check back here at a later date for more information.

He was never an activist but in the year before he died he made a legal testimony about how he was exposed to asbestos. He wanted to do this so that the companies that had exposed him were held accountable. I feel inspired by his dedication to his family and colleagues and I hope to make a difference by telling his story.

“It Was Too Much” – Winona’s Story

Submitted by: Mary Elizabeth, Daughter (unedited)

Location: Massachusetts

Diagnosis: Mesothelioma

1924 - 2009

Mom lived in Massachusetts her biopsy was done in Worcester, Massachusetts on February 21, 2007.

When the doctor came out of the operating room and said “I could not go down your Mom's throat as the mass was to large, so I went in through her right side. I believe it is Mesothelioma from asbestos, as I have seen this before”

I had never even heard of Mesothelioma, I thought I was going to faint. They did not remove a lung due to her age. Mom was in the Hospital for 5 days at which time I stayed at her apartment. Then she was transferred to a Rehabilitation center for about a week. I would travel back and forth from Vermont to Massachusetts to take her to appointments as needed. Her second round of chemo left her very weak I brought her up to Vermont to stay with me for a while.

I decided to move Mom up to Vermont so I did not have to make the 3 hour trip each way from Massachusetts. Emotionally and physically it was too much for me. I have a brother and sister that live in Massachusetts, they had their own lives, so it was left to me. I was all alone when I got the diagnosis; it was one of the worst days of my life.

Mom passed away on June 30, 2009. A lot longer than the Doctor's in Massachusetts had given her.

Submitted

“A Father’s Legacy” – Wolfgang’s Story

by: Heidi, Daughter (unedited)

Location: Canada

Diagnosis: Asbestosis, mesothelioma

1927 - 2007

My father worked at an asbestos factory in Toronto. Johns Manville produced pipes and insulation from Quebec mined chrysotile. His job was to load the hopper with the raw material.

He worked at the factory for 25 years and even got a watch in the end. He also got asbestosis, pleural plaque and eventually lung cancer. His body was lined in asbestos. Once an athlete, his vital lung capacity diminished to 25 percent.

But the asbestos also affected the lining of his heart. That didn’t stop him from loving though.

As his heart surgeon said, “He might only have a third of a heart, but that one third beats harder and better than a lot of people with a whole heart.”

I love you and miss you Dad. I miss you so much!

“…for my childhood friend Yiagos” – Ioannis’ Story

Submitted by: Roxani, Friend (unedited)

Location: Greece

Diagnosis: Mesothelioma

Born 1990

I never imagined before writing such a story for my childhood friend Yiagos.

Yiagos is just 29 years old and was diagnosed in November 2018 with biphasic malignant peritoneal mesothelioma. Unfortunately, the symptoms of the disease started only after the tumor had spread all over his digestive system. Last September he had persistent high fever which he thought was just a flu when he first visited the hospital in Greece. Since that time, Yiagos has been bravely fighting for survival. He had 2 surgeries as well as a series of HIPEC (Hyperthermic Intraperitoneal Chemotherapy) and intensive chemotherapies that sadly have not been effective in stopping the progression of mesothelioma.

Following his doctor’s recommendations, Yiagos urgently needs to be transferred to the Sheba Cancer Treatment Centre of Israel where he will be getting further surgery and treatment. Yiagos’ family has already spent everything they had in order to offer him the chance to live and enjoy his life ahead of him. Therefore, I want to help to raise money by creating a crowdfunding page for his treatment as soon as possible as he is becoming weaker each day.

Yiagos is the strongest person I have ever met in my life. Even in the most difficult times, he has remained happy with a shiny smile, always staying positive and never complaining even during the worst days after chemo. Yiagos is an invaluable member of the community. He has worked hard both as a nursery teacher and as a chef. Please help Yiagos to go back into teaching toddlers with his immense smile and love for them.

We would really appreciate any donations from you to help Yiagos fight cancer and live a long life and we will be forever grateful. Please help make our wish come true.

"BADGES Of Pain Voices For Change" 2024

Navigating the Path of Grief Reflections and Guidance from a Fellow Traveler

By Linda Reinstein

About Us

The Asbestos Disease Awareness Organization (ADAO), founded in 2004 by Doug Larkin and Linda Reinstein, stands as the largest independent asbestos victims’ organization in the United States. This nonprofit, a 501(c)(3) entity, was born out of personal tragedy and has grown into a powerful source of advocacy for those affected by asbestos. With over 50,000 individuals in its network, ADAO is dedicated to eliminating asbestos-related diseases.

Our Mission and Vision

ADAO is dedicated to preventing consumer, environmental, and occupational asbestos-caused diseases through national and international education, advocacy, and community initiatives. Our vision is an asbestosfree world, where no one suffers from asbestos-related conditions.

Although ADAO has exponentially grown since 2004, our mission and goals have remained constant.

• Education: Educate the public and medical community about asbestos-related diseases and preventing asbestos exposure. Support research that leads to early detection, prevention and a cure.

• Advocacy: Collaborate with organizations around the world for a global asbestos ban. Raise awareness that asbestos is still legal and lethal in the U.S. Protect asbestos victims’ civil rights.

• Community: Unite asbestos victims to Share Their Stories, learn about treatment options, and support each other.

Together, we can achieve a safer, healthier future free from the threat of asbestos. Your support, voice, and action are crucial in this fight.

Get involved at AsbestoDiseaseAwareness.org

Shared Stories: How Asbestos Changed Our Lives Forever

Created and Published by the Asbestos Disease Awareness Organization (ADAO)

Copyright © 2024, Asbestos Disease Awareness Organization (ADAO). All rights reserved.

This book contains stories submitted by individuals who have given their express consent for their personal experiences to be included. While these stories are true to the best knowledge of the individuals, some names, locations, and identifying details may have been altered to protect their privacy.

No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the publisher, except in the case of brief quotations embodied in critical reviews and certain other non-commercial uses permitted by copyright law.

For permission requests, please contact the publisher at: Asbestos Disease Awareness Organization (ADAO) https://www.asbestosdiseaseawareness.org

Printed in the United States of America.

SHARED STORIES

HOW ASBESTOS CHANGED

OUR LIVES

FOREVER

Be heard. Share your story. Make a difference.

Asbestos has impacted too many lives, but together, we can create lasting change. We invite you to share how asbestos has touched your life by contributing to Shared Stories: How Asbestos Changed Our Lives Forever. Your voice can raise awareness, inspire others, and help drive critical action.

Join ADAO as we work to advance prevention and policy efforts to end all asbestos-caused diseases. Together, we can protect future generations and move toward a world free from asbestos.