Asbestos Disease Awareness Organization Book || "Shared Stories: How Asbestos Changed Our Lives" by Linda Reinstein

SHARED HOW ASBESTOS SHARED

HOW ASBESTOS CHANGED OUR LIVES

SHARED STORIES

HOW ASBESTOS asbestosdiseaseawareness.org CHANGED OUR LIVES

STORIES

The Asbestos Disease Awareness Organization is asbestosdiseaseawareness.org

CHANGED OUR LIVES

pleased to present our new book of over 70

Share Your Story submissions at the Unity and

STORIES

Remembrance Brunch on Sunday, March 24. The Asbestos Disease Awareness Organization is This 70 book, entitled “Shared Stories: How pleased to present our new book of over

Asbestos Share Your Story submissions at the Unity and Changed Our Lives,” honors the courageous fight of those impacted by Remembrance Brunch on Sunday, March 24. This

book,

entitled

“Shared

Stories:

How

asbestos disease.

9th Annual ADAO International Asbestos Awareness Conference

asbestosdiseaseawareness.org “The Asbestos Crisis: New Trends in Prevention and Treatment” Asbestos Changed Our Lives,” honors the courageous

fight

those

impacted

asbestos disease.

March 22 – 24, 2013 | Washington, D.C.

The Asbestos Disease Awareness Organization is pleased to present our new book of over 70

ADAO would like to thank the following law firms for their dedication to mesothelioma patients and their 2013 platinum level financial contributions that made this book possible.

Baron & Budd Motley RIce Simmons Law Firm

How Asbestos Changed Our Lives

The Asbestos Disease Awareness Organization (ADAO) understands the bravery and fortitude it takes to share personal experiences. It is our privilege to present the new ADAO book “Shared Stories: How Asbestos Changed Our Lives” which honors courageous mesothelioma patients and families who have been impacted by asbestos. Sadly, some of the patients who previously shared their stories have since passed away and we honor their memory here. We thank each of you who contributed to this book and, for those of you who haven’t, we encourage you to make your voices heard. ADAO will continue to add submitted stories to future editions. Together, change is possible. ~ Linda Reinstein

ADAO Shared Stories

“The King of Cool” – Steve McQueen’s Story 1930-1980 Location: IN Date of 1st Symptoms: 1978 Date of Diagnosis: DEC-1979 Date of Death: 07-NOV-1980 Diagnosis: Pleural Mesothelioma Treatment: holistic treatments and surgery to remove metastatic tumors 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

How Asbestos Changed Our Lives

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.

ADAO Shared Stories

“Keeping His Memory Alive” – Carl’s Story 1924-2002 Date of Diagnosis: 17-AUG-2001 Treatment: Surgical stripping of the lining of the lungs. He also was in a clinical trial for about a month. Location: CA 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.

How Asbestos Changed Our Lives

“Asbestos Has Changed My Life” – Michael’s Story Year of Birth: 1984 Date of Diagnosis: 14-FEB-2012 Treatment: Surgery 2 times, chemo, clinical trials Country: USA 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.

ADAO Shared Stories

“Our Journey with Mesothelioma” – Chip’s Story 1952-2012 Treatment: Chemo, Surgery and Radiation Location: NC 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

How Asbestos Changed Our Lives

physically. I couldnâ&#x20AC;&#x2122;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 â&#x20AC;&#x201C; 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.

ÂŠ 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

ADAO Shared Stories

“Information is Empowering” – Randy’s Story 1945-2012 Location: NV Date of 1st Symptoms: 04-AUG-2011 Date of Diagnosis: 21-SEP-2011 Diagnosis: Malignant Pleural Mesothelioma Treatment: Pleurectomy/Decortication surgery 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! © 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

How Asbestos Changed Our Lives

“Mesothelioma Robbed Us” – Joe’s Story 1948-2012 Date of Diagnosis: 16-NOV-2010 Treatment: Talc Pleurodosis, Cisplatin with Alimta, the Carboplatin with Alimta Location: VIC, Australia

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 month’s 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.

ADAO Shared Stories

“Doing Something Positive” – Steve’s Story Year of Birth: 1947 Country: Oxford, UK Date of 1st Symptoms: APR-2009

Date of Diagnosis: 16-JUN-2009

Diagnosis: Mesothelioma Treatment: Pleurodesis, radiation to “ports”, chemotherapy (Velcade drug trial plus Cisplatin) 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

How Asbestos Changed Our Lives

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 suprising 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

ADAO Shared Stories

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

How Asbestos Changed Our Lives

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. Hot-air ballooning; Steve at the controls,

ADAO Shared Stories

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

How Asbestos Changed Our Lives

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 thatâ&#x20AC;&#x2122;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.

ÂŠ 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

ADAO Shared Stories

“Praying for an Asbestos Ban” – William’s Story 1935-2008 Date of Diagnosis: 07-MAR-2008 Treatment: None (except for oxygen, and pain medication) Province: Ontario, Canada 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

How Asbestos Changed Our Lives

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.

ADAO Shared Stories

“Reflection of a Life Taken” – George’s Story 1941-2008 Date of 1st Symptoms: OCT-2007 Date of Diagnosis: 30-OCT-2007 Diagnosis: Mesothelioma Treatment: Had 1 treatment of chemo Location: CO 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

How Asbestos Changed Our Lives

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 canâ&#x20AC;&#x2122;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.

ÂŠ 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

ADAO Shared Stories

“Staying Positive” – Mike’s Story Year of Birth: 1982 Date of 1st Symptoms: 10-OCT-2011 Date of Diagnosis: 17-NOV-2011 Treatment: 4 rounds of chemo (cisplatin and alimta), extrapleural pneumenectomy Location: MA 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?

How Asbestos Changed Our Lives

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 pneumenectomy 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 soonâ&#x20AC;Ś.STAYING POSITIVE IS KEY!!!!!!!

ÂŠ 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

ADAO Shared Stories

“Our Family’s Rock” – George’s Story 1935-2011 Date of 1st Symptoms: JAN-2010 Date of Diagnosis: 20-MAY-2010 Treatment: Some Chemotherapy Location: NJ 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!!

How Asbestos Changed Our Lives

“9 Months to Live” – Jim’s Story 1940-2009 Date of Diagnosis: 13-DEC-2007 Diagnosis: Malignant Pleural Mesothelioma Treatment: None available – as terminal – only chemo in later stages for pain Location: Australia 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 checkup – 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.

ADAO Shared Stories

Jorge’s Story Year of Birth: 1945 Location: Rio de Janeiro, Brazil Date of Diagnosis: Approximately 2000 Diagnosis: Asbestos Treatment: Public health provided from the government of Brazil 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

How Asbestos Changed Our Lives

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.”

ADAO Shared Stories

“We Will Love You Eternally” – Darryl’s Story 1965-2011 Date of 1st Symptoms: 18-DEC-2009 Diagnosis: Mesothelioma Treatment: Pleurectomy, partial pneumonectomy, removal of part of diaphragm and part of pericardiem, numerous chemotherapy treatments Location: PA 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! © 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

How Asbestos Changed Our Lives

“Wanting to Fight It” – George’s Story Shared by his daughter, Mary 1932-2009 Date of Diagnosis: 02-JUN-2009 Diagnosis: Epithelioid Pleural Mesothelioma Treatment: Chemotherapy Location: TX 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

ADAO Shared Stories

tested, there was no diagnosis and he would return home. The doctors didnâ&#x20AC;&#x2122;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.

ÂŠ 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

How Asbestos Changed Our Lives

“Trying to Make a Living” – Rebecca’s Story Date of 1st Symptoms: 06-OCT-2009 Date of Diagnosis: 26-AUG-2011 Diagnosis: Mesothelioma Treatment: Chemotherapy and partial removal of tumors Location: GA

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.

ADAO Shared Stories

“In the Midst of the Storm…A Rainbow Shines” – Richard’s Story 1942-2008 Date of 1st Symptoms: JAN-2008 Date of Diagnosis: 13-JUN-2008 Diagnosis: Mesothelioma Treatment: None was available to him; it was too far progressed…. Location: WV 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. My mother now lives beside of me and we are so very close, this was one of my daddy’s last wishes. 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.

How Asbestos Changed Our Lives

“Images of the Asbestos Ghost” – Jan’s Story Shared by his son, Jan Jr. 1934-2008 Date of 1st Symptoms: 1993 Date of Diagnosis: 19-MAR-2008 Diagnosis: Mesothelioma Treatment: No possibilities. Country: Netherlands 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 lungtissue. Years passed with very few physical problems. But the worst was to come in 2008. Pains in the

ADAO Shared Stories

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.

How Asbestos Changed Our Lives

“Full of Impotent Rage” – Jo’s Story Tragically, Jo lost her mesothelioma battle in 2012. Location: NY Date of 1st Symptoms: Sept 2010

Date of Diagnosis: 8 Feb 2011

Diagnosis: Stage 4 Pleural Mesothelioma Treatment: 6 rounds of chemo, Pemetrexed, Carboplatin currently March – June 2011. Phase 1 Drug Study 4 infusions done at Sloan Ketterings DTC center, Currently on Vinorelbine (chemo) have undergone 2 infusions so far. 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

ADAO Shared Stories

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 than 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

How Asbestos Changed Our Lives

“Turned Away” – Julius’ Story Location: Canada Date of 1st Symptoms: 10-MAR-2011 Date of Diagnosis: 11-MAR-2011 Diagnosis: Malignant Pleural Mesothelioma Treatment: Julius was diagnosed with malignant pleural mesothelioma of the left side as well as pericardium was affected with the cancer growth. We had no treatment what so ever. Only doctor in Ontario who operates this condition FIRED Julius and left us with no doctor. 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

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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’ heart beat was 210 beat per minute. It would go up and down between 155 – 210 beats. Julius got a heart medication only to wait te see his children. I was told that he will not make it alive from the hospital. He did. March 14 we took him

How Asbestos Changed Our Lives

home. He did not want to die. He was fighting to live. Finally, March 23, 2012 his heart gave up forever. 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 â&#x20AC;&#x153;hot stuffâ&#x20AC;?. That needed attention to be heavily promoted even though the first documented death from asbestos dates back to 1908!

ÂŠ 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

ADAO Shared Stories

“A Life Cut Short” – Moe’s Story 1930 - 2010 Location: OH Date of 1st Symptoms: AUG-2010 Date of Diagnosis: 22-NOV-2010 Diagnosis: Peritoneal Mesothelioma Treatment: Cytoreductive Surgery (CS) and Hyperthermic Intraperitoneal Chemotherapy (HIPEC). However, his body was too weak for that surgery and his vital organs started to shut down. 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

How Asbestos Changed Our Lives

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.

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“Misdiagnosed” – Gene’s Story Location: LA Date of 1st Symptoms: 12-NOV-2011 Date of Diagnosis: 12-JAN-2012 Diagnosis: Pericardial Mesothelioma Treatment: None

My father started feeling bad in mid-September 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 a-fib. 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,

How Asbestos Changed Our Lives

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!

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“10 Year Survivor” – Bonnie’s Story Year of Birth: 1948 Location: NJ Date of 1st Symptoms: 27-JAN-2012 Date of Diagnosis: 13-FEB-2002 Diagnosis: mesothelioma Treatment: 1 debulking gemcitimine, cisplatin, doxyrubicyn, gamma interferon, mixamycin ports in abdomen, radiation My world has become a roller coaster ride dealing with my mesothelioma caused by washing my husband’s 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

How Asbestos Changed Our Lives

“Four Generations” – Laura’s Story Location: MT 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.

ADAO Shared Stories

“A Heart of God” – Elizabeth’s Story Shared by her daughter, Kathy Location: LA Date of 1st Symptoms: JUL-2008 Date of Diagnosis: Autopsy confirmed Diagnosis: Pleural Mesothelioma Treatment: Chemo Date of Death: 26-NOV-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

How Asbestos Changed Our Lives

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…

ADAO Shared Stories

“If I Should Fall Behind” – Charles’ Story Shared by his daughter, Annemarie Location: FL Date of Diagnosis: 8-9-2010 Diagnosis: Pleural mesothelioma Treatment: Chemotherapy

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.

How Asbestos Changed Our Lives

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.

ÂŠ 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

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“He Has a Place in Heaven” – Russell’s Story 1909 - 1981 Location: MI Date of Diagnosis: 15-APR-1977 Diagnosis: Mesothelioma Treatment: 3 surgeries. First 2 for to remove multiple tumors last surgery removal of 1/4 lower left lung. Total of 6 rounds of chemo IV and pill treatment with Adriamycin and Cytotoxin. Radiation of chest and shoulder. Attempted laser at Roswell Park..found too wide spread. 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

How Asbestos Changed Our Lives

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 â&#x20AC;?golden yearsâ&#x20AC;? of retirement. I am active in speaking out and trying to make individuals aware of the dangers of asbestos. With its 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.

ÂŠ 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

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“Asbestos Has Literally Flipped My World Upside Down” – Larry’s Story Tragically, Larry lost his mesothelioma battle in 2012. 1945-2012 Location: Florida Date of 1st Symptoms: 25-OCT-2011 Date of Diagnosis: 06-JUL-2006

Diagnosis: Mesothelioma

Treatment: Both traditional & non-traditional ideas: maintain healthy eating habits, with a wheat germ all-natural drink, exercise daily and stay positive, plus surgery to remove tumors and a touch of chemo. Asbestos has literally flipped my world upside down. Never did I realize how harmful this socalled ‘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.

How Asbestos Changed Our Lives

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.

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“A Father’s Legacy” – Wolfgang’s Story 1927-2007 Province: Ontario Date of 1st Symptoms: APR-2007 Date of Diagnosis: 12-DEC-2005 Diagnosis: Asbestosis, mesothelioma Treatment: Chemotherapy 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!

How Asbestos Changed Our Lives

“Rudy Doesn’t Live Here Anymore…” – Rudy’s Story 1931-2004 Country: Canada Date of 1st Symptoms: MAY-2004 Date of Diagnosis: 25-SEP-2004 Diagnosis: Mesothelioma Treatment: None 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 pipe-fitter 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

ADAO Shared Stories

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 shrivelled, succumbed to death. I have never seen anything like it. You slowly suffocate to death. You can breath 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…

How Asbestos Changed Our Lives

“Fighting to Honour the Life of a Wonderful Father” – Gary’s Story 1934-2011 Country: Canada Date of 1st Symptoms: September 1, 2010 Date of Diagnosis: 14-DEC-2010 Diagnosis: Pleural Mesothelioma Treatment: None 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

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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.

How Asbestos Changed Our Lives

“My Life Battling Mesothelioma” – Jan’s Story Year of Birth: 1960 Location: NY Date of 1st Symptoms: 20-NOV-2011 Date of Diagnosis: 26-AUG-2004 Treatment: Tumour removal followed by Radiotherapy and Chemo. Then chemo 2 yrs later, Cryoablation then surgery. Cryoablation and radiotherapy 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

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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 time line 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

How Asbestos Changed Our Lives

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.

ÂŠ 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

ADAO Shared Stories

“I’ll Do Anything to Fight Mesothelioma to Have More Time with My Family, Anything” – Alan Reinstein’s Story Shared by his widow, Linda 1939-2006 Location: California Date of 1st Symptoms: Summer 2002 Date of Diagnosis: June 16, 2003 Diagnosis: Pleural Mesothelioma Treatment: Multiple surgeries and chemotherapy, including the radical Extra-Pleural Pneumonectomy (EPP) — a surgical procedure that removed Alan’s rib, left lung, pericardium, and removed and replaced his diaphragm

How Asbestos Changed Our Lives

In 2003, after enduring 9 months of symptoms and multiple visits to doctors, my husband, Alan, was diagnosed with “mes•o•the•li•o•ma,” a disease I couldn’t pronounce and doctors can’t cure. At the time, I had never heard of the mesothelioma, and I thought asbestos had been banned. Because of asbestos exposure, our then-10-year-old daughter had to watch her father slowly die from a preventable disease. Sadly, our experience is a common one. Alan spent his last year with us tethered to supplemental oxygen, like a dog on a leash. I want him back – he was my soul mate and my daughter’s father, but resurrection in not an option. Instead, I must and will use my voice with the Asbestos Disease Awareness Organization (ADAO) to end the deadly legacy of asbestos. It is reprehensible that the United States still imports hundreds of metric tons of chrysotile asbestos every year. The U.S. Geological Survey reported in 2010 that all the asbestos used in the United States was chrysotile, of which 90% was imported from Canada and 10% from Brazil. For each life lost from an asbestos-caused disease, a shattered family is left behind.

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“It’s Too Soon” – Michael’s Story Shared by his daughter, Andrea 1948-2009 Location: Wisconsin Date of 1st Symptoms: 28-JUL-2009 Date of Diagnosis: 22-NOV-2007 Diagnosis: Mesothelioma 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.

How Asbestos Changed Our Lives

“Robbed of Many More Years” – William’s Story Shared by his daughters, Leah and Stacy Location: Ontario, Canada Date of 1st Symptoms: October 2007 Date of Diagnosis: March 7, 2008 Treatment: Pain management only. Hydromorphone (about 10 times stronger than morphine) 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 physio therapy 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

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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 canâ&#x20AC;&#x2122;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.

ÂŠ 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

How Asbestos Changed Our Lives

“My Life Has Changed 100%” – Janine’s Story Year of Birth: 1954 Location: Ohio Date of 1st Symptoms: 19-MAY-2011 Date of Diagnosis: 08-MAR-2010 Diagnosis: Mesothelioma Treatment: Chemo with Alimta and Cisplatin and Carboplatin 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%.

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“Breathtaking” – Richard’s Story Shared by his daughter, Kathleen Location: Canada Date of 1st Symptoms: DEC-2001 Date of Diagnosis: 02-APR-2001 Treatment: He decided not to take the painful treatment. He took pills for nausea and they did drain his lungs. 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 honour 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.

How Asbestos Changed Our Lives

“Ambler: The Town That Asbestos Built” – Joe’s Story Shared by his widow, Marilyn Location: Pennsylvania Date of 1st Symptoms: 15-JAN-2003 Date of Diagnosis: 30-MAR-2003 Treatment: Chemo trial of Gemzar, Cisplatin with or without Avastin (bevacizumab) Asbestos has destroyed our family. Joe died when our kids were only 8 and 10. They’ve had to go through critical parts of their lives without the wonderful father that they knew and loved. As a widow, I had to learn to care for myself and our young children without the comfort and love from man I loved so much. Asbestos made me both a mother and a father. In 2009, all three of us are baffled that asbestos is still legal and that no real cure is available for mesothelioma victims.

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“Women and Mesothelioma” – Anita’s Story Tragically, Anita lost her mesothelioma battle in 2011. Location: Australia Date of 1st Symptoms: 17-Feb-2011 Date of Diagnosis: 25-May-2007 Diagnosis: Mesothelioma Treatment: Lining of right lung removed. Chemo with Alimta and Cisplatin 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 tumours where 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 tumours. 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 tumours. I believe I have a pretty positive outlook. I have a lot of faith in medical science and the speed at © 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

How Asbestos Changed Our Lives

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 tumours returned. I have been undergoing chemo since then and have had some good results with reductions in my tumours. 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. I have a blog that I started when I was first diagnosed with the intention of keeping friends and relatives up to date on my progress. I now also use my blog to hopefully help others with Mesothelioma. For example, I talk about my techniques to keep positive when things get tough. My blog is http://blog.anitalive.com/ I am also involved with ADSVIC (Asbestos Diseases Society of Victory) and an online support network which evolved via Facebook. We call ourselves the Mesowarriors. I am concerned that there is still a lack of awareness of the dangers of asbestos and would like to see this changed.

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ADAO Shared Stories

“I Will Not Die in Vain” – Louise’s Story Location: Australia Date of 1st Symptoms: Feb-2002 Date of Diagnosis: Oct-2003 Diagnosis: Mesothelioma

Treatment: My eventual diagnosis by fine needle biopsy & surgery looking for suspected ovarian cancer with removal of large masses of tumours from the peritoneal area then being told it was peritoneal mesothelioma. I was given 2 to 3 months to live or 18 months at best if the tumours shrunk. 18 chemotherapy sessions followed with combination cisplatin and gemcidabine (gemzar) – in Nov 2009 … a new strain of mesothelioma in the pleura raised its ugly head – 3 lots of extensive surgery including bronchoscopy, Vats biopsy and pleuradesis, draining and 3 weeks in hospital then 5 months of cisplatin and alimta followed. Tumours have shrunk and I am back living with mesothelioma with regular updates of blood tests, scans and oncology visits.

How Asbestos Changed Our Lives

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 â&#x20AC;Ś 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!

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ADAO Shared Stories

“An Expectation of Justice” – Stan’s Story Shared by his daughter, Ann Location: OR Date of 1st Symptoms: 30-JAN-1981 Date of Diagnosis: 27-FEB-1981 Treatment: Exploratory surgery, cutting all the tumors on the plura, and then and “experimental” chemotherapy) 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

How Asbestos Changed Our Lives

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, I now I carry in my heart, an expectation of justice…

ADAO Shared Stories

Social Media and Mesothelioma” – Mavis’ Story Year of Birth: 1941

Mavis has not let a diagnosis of mesothelioma curtail her passion for life. In fact, since her diagnosis, she has helped raise awareness of asbestos in the UK through her online blog, a book, and other social media outlets. Mavis decided to write a blog after she was diagnosed with mesothelioma in 2009 as a way to keep her friends and family updated while she underwent treatment. Originally, Mavis was told she had 3 months to live, and while everyone around her was shocked and worried, Mavis moved forward with treatment. Before her diagnosis, Mavis was a very active person. She attended fitness classes, went swimming, walked in the countryside sometimes up to 14 miles, and without fail, walked her dog 2.5 miles every day. While on holiday in Spain in 2009, she unknowingly burned herself with an iron but didn’t realize it. But her body did react – her arms and hands twisted in, her feet went numb, and

How Asbestos Changed Our Lives

she suddenly couldn’t breathe. At K&CC Hospital, 5 liters of fluid were drained from her lungs and she underwent a VATs operation with Talcum Powder to prevent future fluid build-up. She was then diagnosed with mesothelioma and given a life expectancy of 3 months – 2 years. Mavis never worked directly with asbestos. Instead, she washed her loving husband Ray’s clothes when he returned home from the Dockyard where he worked as a Shipwright after leaving the National Service. While Mavis was diagnosed with mesothelioma, Ray developed scarring on his lungs. Mavis went on to receive chemotherapy – a combination of Alimta and Cisplatin in New York and also radiation. The 10 hours of chemotherapy pumped into her veins made her sick the next day and weakened her to the point it was difficult to walk around. But just as she regained her strength, 21 days were up and it was time for her next round of chemo. After 4 sessions, Mavis learned that her CT scan showed she was stable. About a year later in August 2010, her oncologist was excited to tell her that her tumor had shrunk. He told her “we don’t often sit in this chair and give out good news but today is an exception.” Since then, she’s enjoying life and is now able to walk her dog again, though she does tire easily. Ray and Mavis have also gotten good use out of their motorhome recently. In the last four months they

ADAO Shared Stories

have covered over 4,000 miles in the UK. On March 14, 2011, Mavis learned that her tumor is growing again. She will undergo her second line of chemotherapy in May 2011. Meanwhile, she is also finding trials at St Barts in London under Jeremy Steel who she visits Friday April 8th. She remains positive and continues to tell her story. In fact, her blogs have received more than 30,000 hits in 2 years. She has found so many friends on Facebook (the MesoWarriors) where everyone helps each other and discusses everything including treatments and what we are going through. And ADAO has been a diving board for her to tell her story and she also promote ADAO’s message through Twitter and Facebook, where she shares all of Linda Reinstein’s messages. Mavis is raising money for her new charity, Mesothelioma UK. Social media’s instant access to the world has allowed her even to connect with a support group in Australia through Skype. Mavis says that, “I wouldn’t have been able to achieve half of what I have if it wasn’t for the social media.”

How Asbestos Changed Our Lives

“The Value of My Life in Dollars and Tears” – Heather’s Story Year of Birth: 1969 Location: Minnesota Date of 1st Symptoms: 30-SEP-2005 Date of Diagnosis: 21-NOV-2005 Diagnosis: Mesothelioma Treatment: Extrapleural pneumonectomy (EPP) with intrathoracic/ intraperitoneal heated chemotherapy; four sessions of chemotherapy, Alimta, and cisplatin; six weeks of radiation. 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. My life was changed forever that day and now, almost five years later, 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.

ADAO Shared Stories

“Mesothelioma and Me” – Debbie’s Story Born: 1959 Location: United Kingdom 1st Symptoms: 01-JAN-1994 Date of Diagnosis: 13-NOV-2006 Treatment: Chemoembolisation 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 in touch 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. © 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

How Asbestos Changed Our Lives

“Dust into Gold: Banning Asbestos Is Good Business” – Paul’s Story Age: 60 Location: California 1st Symptoms: 1-JUN-1998

Date of Diagnosis: 15-NOV-2003

Diagnosis: Peritoneal mesothelioma Treatment: Surgical debulking of peritoneal mesothelioma, with intraoperative heated chemotherapy. Removal of secondary tumor in abdominal muscle 2 years later. 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.

ADAO Shared Stories

“With Love Comes Hope” – Lonna’s Story Shared by her daughters, Kim & Kristen Date of Diagnosis: 2/11/07 Diagnosis: Pleural mesothelioma Treatment: Carboplatin, altima – chemotherapy – MN; EPP – Boston MA; (Dr Sugarbaker) heated cisplatin wash radiation – MN 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.

How Asbestos Changed Our Lives

“The Power of Public Health Advocacy: A Patient’s Perspective” – Julie’s Story Born in 1971 Location: Missouri Date of 1st Symptoms: 7-AUG-2006 Date of Diagnosis: 23-AUG-2006 Diagnosis: peritoneal mesothelioma Treatment: Initial debulking, surgery with chemo infusion 3 times, and nearly 20 chemotherapy treatments. No treatment since Nov. 2008. 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.

ADAO Shared Stories

“India Through My Eyes” – Ravindra’s Story 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

How Asbestos Changed Our Lives

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 finalized for filing in the trust, which involves secondary exposure and claim for a contract worker.

ADAO Shared Stories

“A Hole in Many Lives” – Bob’s Story 1946 – 2008 Date of Diagnosis: 15-SEP-1997 Diagnosis: Mesothelioma

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.

How Asbestos Changed Our Lives

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. Bobâ&#x20AC;&#x2122;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.

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ADAO Shared Stories

“I Thought I Was Going to Die” – Polly’s Story Born in 1961 Date of Diagnosis: 15-AUG-2006 State: PA

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

How Asbestos Changed Our Lives

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 poatssium and magnessium. 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.

ADAO Shared Stories

“I Will Never Be the Same Again” – Janelle’s Story Born in 1976 Date of Diagnosis: 1-May-2007 Location: IN Treatment: thoracentesis, chemotherapy, pleurodesis with chest tube drainage and talc, extrapleural pneumonectomy, 30 rounds of radiation, physical therapy,nerve blocks, decortication surgery with HIPEC, and medical acupuncture

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!

How Asbestos Changed Our Lives

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!

ÂŠ 2013 Asbestos Disease Awareness Organization. All Rights Reser ved.

ADAO Shared Stories

“Unsuspecting Heroine” – Doreen’s Story Shared by his daughter, Ann Province: Ontario Date of 1st Symptoms:08-NOV-2011 Date of Diagnosis: 01-APR-2011 Diagnosis: Mesothelioma 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

How Asbestos Changed Our Lives

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!

ADAO Shared Stories

“Fighting This Disease with Everything He Has” – Roland’s Story 1945 - 2013 Date of Diagnosis: 08-NOV-2009 Treatment: Alimpta/Cisplatin 6 rounds Location: Ontario, Canada How has asbestos changed your life? 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.

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