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The holidays can be magical and stressful, make you thankful or hate everything. But when you add in a cancer diagnosis, treatment, or a hospital stay, or any illness to the season, you end up dealing with so much more. The season comes with some pretty high expectations and along with that, equal disappointment. I learned LONG ago to tamper expectations and try not to get carried away, but it isn’t always that easy.

Making Christmas Traditions Despite a Diagnosis

When I was about 8 years old, my dad had a horrible gallbladder attack that landed him in the hospital Christmas Eve through the 27th of December. We postponed Christmas until the 28th and you know what? It was just as magical as on the 25th. See, Christmas isn’t just a DAY, it is a tradition, a feeling, and it can be celebrated at anytime and in any fashion.

I myself was diagnosed right before Thanksgiving in 2005, and got that confirmation from my specialist right before Christmas that same year. It was my baby girl’s first Christmas and was supposed to be special and memorable, and it certainly was, but for all the wrong reasons. It was difficult, at best, to put on a happy face and pretend all was merry when I was facing such a foe. I’m eternally thankful that Lily was just 4 months old and doesn’t remember the cloud over her first Christmas.

Through the ensuing years, we did all we could to make it the best. Even with my husband on shift work and having to work Christmas Day, we knew that as long as we were together, it was ok. I also learned that it was ok to decline invites to parties or other celebrations if I wasn’t feeling well or didn’t have the energy to get through the festivities. We found that by keeping our own traditions small and intimate, it helped me immensely. That simply isn’t a possibility for some people, especially when people have family members and friends who want to pretend everything is fine, even when it’s not. We just put on a brave front, pretend everything is fine, and say thanks when people say things like “You LOOK so good!!” I know they mean well, but it also makes me wonder what they were expecting.

Facing Cancer Treatment During the Holiday Season

This time of year is especially difficult when you are in treatment or just got some news you didn’t want to hear. I asked a couple of friends, both in active treatment, to share their thoughts about the holidays and illness.

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I learned to just take things in stride, and that no one needs a perfect holiday. That is just too much stress. It’s ok to take it easy, scale back, and most of all, let people help. The other thing I learned is that the holidays also bring out the best in people, and they love to help, so let them and soak up the love.

My wish for you this season is to be present, and in the moment, no matter what is going on. Just enjoy the family, the friendships, and the sugar cookies.

A big thank you to Vicki Bowen LeVasseur and Annamarie Kearns for sharing their experience and advice for the coming holidays.

“Having gone through chemo during the holidays adds more of a challenge to your treatments than during a regular, non-holiday time of year. Everyone comments “well, you look good!” and you get so tired of putting on the fake smile and thanking them for that when you really just feel like crap and are going through the motions of just getting through another day, probably no different than going through grief, really. You long for days of feeling “normal” and not sickly when the sight of food makes you ill and you just want to curl up in a ball and forget about everyone and everything. But you put on the game face and just do it.

Now this year I’m in a different situation. Still going through a treatment that doesn’t make me feel as sick as before, just tired for several days. But knowing that my disease is now growing and spreading is a gut-kicker. And once again you hear the “you look good!” But inside you know your body is fighting the battle of its life trying to survive and again, just get through the days and deal with it. Went to a football party today and everyone was so concerned (which you do appreciate) but sometimes you just want to forget about your situation and be normal.

This disease does not let you be normal. Ever. And everyone tells you to keep on fighting it and you want to scream, “I am for God’s sake!” But you smile and say you’re doing your best. You know the holidays are right around the corner but you’ve got no energy or desire to go out shopping and dealing with all that because you just don’t feel good. But you have to because you want to kick cancer’s ass and not let it “have you”.

It just ain’t easy.”

~Vicki

“When I was diagnosed with advanced epithelioid pleural mesothelioma, I often wondered whether I would ever celebrate another holiday season with my family. With the support from family and friends, my medical team, the mesothelioma community and a whole lot of fight, I will be celebrating my fifth Christmas. I’ll be honest, it’s been rough at times, but everyday is a gift and I am so happy to have this time with my husband, three beautiful daughters, their spouses and my six wonderful grandchildren. Hope faith and love can get you through anything. Mesothelioma will never define me. Happy holidays and never forget to tell your family and friends how much you love them and how grateful you are to have them in your life.”

Much Love,

Annamarie Kearns

Mesothelioma Warrior

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In October, Canada’s government followed through on a promise it made in 2016 to eventually ban asbestos use. On December 30, the Prohibition of Asbestos and Products Containing Asbestos Regulations will prevent the sale and use of asbestos, but will also target the sale, importation, and use of asbestos-containing products.

Facing mounting pressure from environmental and health advocacy groups, the regulation has largely put an end to asbestos use in the country, though critics have been quick to point out that several exceptions have been made to allow for some applications. For example, asbestos-containing products may still be used to service and repair military equipment and equipment in nuclear facilities until 2023. An exclusion has also been made for the chlor-alkali industry, where asbestos use won’t be prohibited until 2030. In the United States, the chlor-alkali industry is the main importer of raw asbestos and accounted for almost all asbestos use in 2017.

Canada’s push to ban asbestos was nearly unheard of as recently as a decade ago. For years, the Canadian government blocked efforts to add asbestos to the Rotterdam Convention’s hazardous substances list. But in 2011, the last asbestos mining operation in Canada shut down, and the country vowed not to block asbestos from being added to the international treaty the following year. In May 2016, Prime Minister Justin Trudeau said the country would push forward with its own ban of the toxic chemical.

While Canada is far from the first country to cut ties with the cancer-causing mineral, it joins a growing list of countries putting public safety first. The European Union prohibited asbestos use back in 2005, and Australia banned all types of asbestos materials and uses in 2003. Even Brazil, once a major exporter of asbestos to the U.S., decided in late 2017 to ban asbestos production and use.

An End to Mesothelioma in the Netherlands

In countries where asbestos use has been banned for decades, the fight has moved from asbestos production to abatement. The Netherlands ended asbestos use in 1993, but the European country recently decided to enforce a regulation requiring all asbestos roofing in the country to be removed by 2024.

According to BME Opleidingen, an estimated 70% of all buildings in the country contain asbestos somewhere. Though the cost is high, thought to be about 1.5 billion euros, the government is committed to the project and is offering subsidies for qualifying people, including those replacing old asbestos roofing with solar panels and those who have to remove more than 35 square meters (about 376 square feet) of asbestos. These moves and subsequent dollars are all part of an attempt by the Netherlands to eliminate all asbestos-related deaths by the year 2040.

A Continuing Danger at Home

As other countries continue to ban asbestos and work to remove its dangers, use of the toxin is seemingly on the rise in the United States. According to an analysis performed by the Asbestos Disease Awareness Organization (ADAO) and the Environmental Working Group (EWG), asbestos imports rose from 13 metric tons in July to 272 metric tons in August, an increase of more than 2,000%.

It’s difficult to say what caused the spike in American imports, but the rise came soon after an announcement was made by the government’s environmental watchdog agency. In June, the Environmental Protection Agency proposed a suggested new use rule, or SNUR, that would require manufacturers and importers to receive EPA approval before starting or resuming certain applications of the mineral.

Interestingly, all of the asbestos imported into the U.S. this year has come from Brazil, which is working through its stockpiles after banning production and use last year. When that supply is drained, U.S. importers will only have Russia, Kazakhstan, and China left as the world’s suppliers.

The controversy has grown in recent years as President Trump has gone on the record several times to defend asbestos use in buildings, and has even said that calls to end asbestos use were led by “the mob.” The president’s words, however, may have embolden Russia’s own asbestos manufacturers. Earlier this summer, an asbestos producer in Russia began to send out its products with a seal bearing Trump’s face along with the phrase, “Approved by Donald Trump, 45th President of the United States.”

Meanwhile, research data from the ADAO and the International Commission of Occupational Health reported earlier this year that asbestos may be linked to nearly 40,000 deaths annually in the United States, including more than 3,100 from mesothelioma. This statistic is more than double what previous reporting has suggested and contradicts the government’s own published numbers, further stressing the importance of a worldwide asbestos ban.

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Every once in a while, you get an email that makes you yell out loud. I received one of those emails a few weeks ago, and I literally screamed when I read it.

Hi Heather,


I am Soledad O’Brien’s executive producer in Washington DC. We wanted to do an interview about the dangers of asbestos and the potential changes by the EPA. I was wondering what your schedule is like in the next couple of weeks. We tape on Thursdays in Washington, DC.


Please let me know!

SOLEDAD O’BRIEN!? The Soledad O’Brien! She’s a hard-hitting journalist whose compassion shows through in all she does, and a woman who isn’t afraid to talk about the hard stuff. She was contacting me to talk about my thoughts on the Environmental Protection Agency’s proposal to allow new uses of asbestos on her show, A Matter of Fact.

It’s never really been a secret how I feel about this administration’s stance on asbestos and the other toxic chemicals and regulations they’ve found themselves involved with. I have published op-eds in The Guardian and The Progressive, which were picked up and shared by other publications throughout the country. I did a video with Greenpeace last year airing my concerns about the EPA, and now, Soledad O’Brien wanted me to appear on her show.

Setting the Stage

Mary Hesdorffer, the executive director of the Mesothelioma Applied Research Foundation, which happens to be in Washington, D.C. and is a short distance from the Newseum, was also looped in for the taping.

We were able to coordinate our schedules to be in D.C. for taping the next week. I’ve learned from doing different media appearances and podcasts that things either move super fast, or at a snail’s pace. This one happened to move super fast. Before I knew it, I was flying to Washington, D.C., and taping Ms. O’Brien’s show at the prestigious Newseum Broadcast Studios. Mary and I met up earlier and rode to the studio together. After wandering around for a little bit, we finally found our contact who brought us back to the green room.

Ms. O’Brien was taping three episodes of A Matter of Fact that day and we were the last interview. To have this issue taken up and talked about by someone with a show as big as Ms. O’Brien’s tells me that people are taking notice.

This Matters More than Ever

I’ve been around the mesothelioma community, and educating people about the dangers of asbestos, for the better part of a decade. I’ve seen the devastation asbestos-related diseases cause firsthand, and the idea that the EPA is even thinking about allowing new uses of asbestos when it should be banned makes my blood boil.

I told Ms. O’Brien that I have lost 13 people I know to mesothelioma just this year. The amount of pain, suffering, and loss is not something I talk about often, but it is something I deal with on a near daily basis.

But when Soledad O’Brien takes notice and offers me a place on her show, that tells me I am doing the right thing. I refuse to stay silent because too many people have been. Through no fault of their own they can’t fight anymore, so I will be their mouthpiece. I will champion the cause for all of those who can’t.

I’m not going to lie, being on her show was a rush, and even more so was seeing it on television. My eternal thanks go to Soledad O’Brien for pushing the envelope and talking about the difficult topics. Hopefully, other journalists follow her lead and this will not be the last time you see me on a show like this. If you didn’t catch the segment and would like to watch, check it out here: https://matteroffact.tv/asbestos-cancer-survivor-epa-changes-are-unconscionable/.

I’m confident I will be getting more emails that make me yell out loud, and more opportunities to tell people about the amazing mesothelioma community. It’s more important now than ever to shed some much-needed light on a topic that has needed it for far too long.

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In late August, David J. Sugarbaker, MD, a pioneer of mesothelioma treatment and research, a gifted surgeon, and an outstanding mentor, passed away from cancer at age 65. This was an unexpected shock for the entire mesothelioma community. I’ve had the privilege of working alongside Dr. Sugarbaker for over 20 years at Brigham and Women’s Hospital (BWH) where he was the founding chief of the division of thoracic surgery, as well as the founder and director of the International Mesothelioma Program (IMP). Dr. Sugarbaker had a profound impact on the way we treat mesothelioma today, pushing the boundaries of surgery and multi-disciplinary care to prolong the life of his patients. He devoted his life to finding a cure for mesothelioma and had a tremendous influence on all of us here at the Brigham through training, collaboration, mentorship, and support.

David Sugarbaker was born in Jefferson City, Missouri in 1953. He was the eighth of ten children— five of whom became physicians. His father was a prominent surgical oncologist and inspiration to David who assisted his father in the clinic, operating room, and research lab starting at a young age. Dr. Sugarbaker double majored in biology and philosophy at Wheaton College and proceeded to Cornell Medical College, where he was inducted into the prestigious Alpha Omega Alpha Honor Society for the best students in medical studies. He, like his three brothers, graduated from Cornell at the top of his class and was accepted into the renowned General Surgery residency at the Peter Bent Brigham Hospital (which later became part of what is now known as Brigham and Women’s Hospital) in Boston.

While serving as Chief Surgical Resident at BWH, Dr. Sugarbaker’s medical knowledge, surgical skill, and unbounded energy influenced a generation of surgical residents. After graduating from general surgery training at BWH in 1986, he completed two additional years of advanced training in Thoracic Surgery at Toronto General Hospital. Following the completion of his residency training, Dr. Sugarbaker was recruited back to Boston to serve as the first Division Chief of Thoracic Surgery at BWH. As the head of the first non-cardiac division of thoracic surgery in the United Sates, he would go on to become one of the leaders in the field, earning his reputation and doing some of his most important work at BWH.

In 2002, Dr. Sugarbaker founded the International Mesothelioma Program at BWH, where he led major developments in mesothelioma treatment that included extra-pleural pneumonectomy, an aggressive surgery that removes a cancerous lung, the lining around the lung and heart, along with nearby lymph nodes and a portion of the diaphragm. His experience in this operation led to a fives times reduction in the associated operative mortality rate and led to its acceptance as the appropriate surgical treatment of mesothelioma around the globe. Dr. Sugarbaker succeeded in obtaining even higher mesothelioma cure rates and developed intra-operative heated chemotherapy to bathe the inside of the chest for an hour at the time of operation. His surgical innovations at BWH helped lower the operative mortality rate, extended the lives of many patients, and moved the mesothelioma community closer to finding a cure. Dr. Sugarbaker was dubbed “Dr. Mesothelioma,” as he was considered one of the most forefront experts in mesothelioma.

With an extensive knowledge of all current mesothelioma therapies and an ability to effectively treat patients, Dr. Sugarbaker eagerly shared his research and expertise with the medical community. During his tenure at BWH, he published over 300 scholarly articles. He also built a tissue bank that helped to delineate the nature of cancers and the body’s response to those cancers. This bank has allowed numerous collaborators throughout the world to advance our knowledge of lung cancer, esophageal cancer, and mesothelioma.

While he was often recognized for his clinical excellence, innovation, teaching, and research, Dr. Sugarbaker was also known for the way he cared for his patients. He was committed to providing them with the best possible treatment as well as creating an environment that would provide hope and comfort to the sickest of the sick. He modeled compassion and enthusiasm, inspiring both patients and faculty. Understanding the critical nature of the disease, he created a single postoperative intermediate care unit at BWH for Thoracic Surgery patients to provide specialized intensive care, as well as an additional 10-bed dedicated Thoracic ICU. He designed individualized treatment programs in consultation with patients, while ensuring the families’ access to support groups. Providing emotional support for the patients and their families is an essential part of the program, as it is vital to approach treatment with the right attitude, and BWH continues to offer different programs to support patients and their families throughout their journey.

Dr. Sugarbaker ultimately built a one-of-a-kind surgical program at BWH that to this day brings in patients from all around the world who have been turned down for surgery in other hospitals and provides them with a new-found hope. To many of us here at the IMP, he was an inspiration and we are deeply committed to continuing to push the boundaries in mesothelioma care and research. To honor his legacy, we hope to keep his memory alive through the annual David J. Sugarbaker, MD Lectureship, where a leading national or international thoracic surgeon is invited each year as the Sugarbaker visiting lecturer to spend a few days with the faculty and residents as well as deliver a grand rounds lecture at BWH.

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Since its inception in 1970, the Environmental Protection Agency (EPA) has been analyzing the societal and environmental impacts of asbestos. The agency has done its best to regulate the toxic mineral throughout the years, issuing a series of regulations and embarking on a failed attempt in the late 1980s to ban asbestos use in the United States. Nearly thirty years after the EPA’s failed asbestos phase out, the agency is taking another look at the mineral to determine the best possible course of action.

In 2016, asbestos was included in the first round of chemical evaluations introduced as part of the amended Toxic Substances Control Act. However, to much concern, the agency omitted millions of tons of asbestos already found in homes and buildings across the United States. By removing these “legacy uses” from the study, it has narrowed the scope of hazardous asbestos exposure drastically, encompassing only a few hundred tons currently used by the chlor-alkali industry.

Although there is concern from health organizations and environmentalists about the narrowed scope of the evaluation, other recent developments continue to raise questions regarding the role of asbestos in American manufacturing.

A Difficult Road Ahead

In early June, the agency proposed what it calls a Significant New Use Rule, or SNUR, that may potentially open up opportunities for manufacturers to produce new asbestos-containing materials. In a notice filed to the Federal Register, the proposed SNUR would apply to products that are no longer in production. On that list are items like millboard, roofing felt, vinyl-asbestos floor tiles, and many other building materials.

Asbestos was at one time a popular choice for builders and manufacturers because it was cheap, durable, and chemically inert. It wasn’t until years later that its ties to debilitating and often fatal diseases, like mesothelioma, were discovered and later taken into consideration. The mineral is still included in the manufacturing of certain construction materials, but only in very small amounts. Federal law caps the amount of asbestos used in newly-manufactured products at one percent.

In situations where a manufacturer or importer would like to use asbestos for any of the materials that are no longer being produced, they would have to alert the EPA at least 90 days prior to starting. The time frame allows the agency to evaluate the application and determine whether or not it will be acceptable.

According to an informational document issued by the agency, the proposed SNUR “broadens EPA’s restrictions on asbestos products. EPA is proposing to ensure that manufacture, import, or processing for the currently unregulated new uses identified in the SNUR are prohibited unless reviewed by EPA. EPA’s proposed new review process empowers EPA to take action, including prohibiting or limiting its intended use.”

[[generic-button{type:"jenn",text:"Have a Question About Asbestos Products? We Can Help.",mobileText:"Asbestos Product Questions?"}]] Drawing a Different Conclusion Regarding Asbestos

While the EPA contends the proposed rule gives it more latitude to monitor and prevent asbestos-containing products from re-entering the market, critics claim the move doesn’t go far enough. Some claim that because the SNUR targets products already not in production, those applications might as well be banned.

The proposed SNUR is also drawing public ire, as the overwhelming majority of comments received by the agency during its comment period were against any form of regulation that could loosen the strings on asbestos production. Most implore the EPA to ban the mineral, citing that the 90-day notification system keeps the door open for more production to occur, rather than less.

Additional concerns raised during the comment period include the longstanding notion that there is no amount of acceptable exposure to the toxin, and that allowing any asbestos applications puts public health at risk. Though the bulk of the comments have come from anonymous sources, many hit the same notes and stressed the same issues that have been in play for several decades.

It is incredibly difficult to determine what will happen with the proposed SNUR, but the public backlash has been well-documented. In the meantime, the EPA is still evaluating the public health risks associated with asbestos exposure and should have the final reports completed by the end of 2019.

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Sean Sasser came into public fame after appearing on one of the most popular seasons of The Real World: San Francisco in the early 1990s. Though not a cast member himself, Sasser’s relationship with castmate Pedro Zamora quickly became a highlight of the season. Both men had been diagnosed with HIV as young adults and met before the show began at a march in Washington, as LGBTQ and HIV/AIDS educators and activists. The two had a commitment ceremony on the show, marking a momentous occasion as one of the first openly gay couples to do so on television.

After being in the spotlight through the MTV show, Sasser lived a quieter life as a chef, while continuing to teach and speak out about AIDS and HIV. But after surviving over 25 years with HIV, a quick battle with mesothelioma unexpectedly halted his important advocacy work at just 44 years old.

Compromised Health Helped Lead to Mesothelioma

While asbestos exposure is the only clear cause of mesothelioma, there have been many cases over the years where patients have shown no history of coming into contact with the toxin. Sasser was one of many patients who didn’t have a history of working around asbestos or using asbestos products, and any potential exposure in the home or secondhand exposure remained just as unclear.

In recent years, studies have marked other potential risk factors or causes of mesothelioma, including genetics, smoking, or the simian virus (SV40). Though Sasser’s HIV diagnosis is not believed to be a cause of mesothelioma, one study suggested the compromised immune system from living so long with the disease could have contributed to his later diagnosis with the aggressive cancer.

The study detailed malignancies like mesothelioma and leukemia could be caused by infections or immunosuppression in individuals with HIV. Since HIV is known to attack the immune system, people who are HIV positive are more susceptible to infection or other diseases. Researchers noted over 16 cancers that those with HIV or AIDS have a significantly increased risk of developing compared to the general public, with some cancers showing a 77-fold increased risk. Though mesothelioma on its own is a rare cancer with only around 3,000 diagnoses in the United States each year, the study indicated individuals with HIV could face nearly double the risk of developing the disease.

Since mesothelioma is considered to be an aggressive disease, as it often metastasizes, or spreads, quickly through the body, it can be even more dangerous in those who already have worsened health. Along with the type and stage of mesothelioma, a patient’s age, gender, and overall health can greatly impact prognosis.

In Sasser’s case, the mesothelioma diagnosis came by chance, after routine blood work came back with abnormalities. After some further testing, Sasser was diagnosed with stage 4 mesothelioma. As he had faced HIV for over 25 years, his immune system had already faced damaging effects, making it even easier for the aggressive cancer to quickly have a severe impact on Sasser’s health.

[[annette{"subject":"Mesothelioma","position":"right"}]] Facing Stage 4 Mesothelioma

At any stage, mesothelioma has a rather poor prognosis, with most patients expected to live just 12 to 21 months. Stage 4 mesothelioma is the final stage of the disease and indicates spreading to the lymph nodes and distant organs. At this stage, patients face an average prognosis of 12 months and often no longer have curative treatment options. Instead, treatment may focus on reducing symptoms and improving quality of life with palliative care.

Along with an unexpected diagnosis, Sasser was reportedly given just six weeks to live. At the time, Sasser was working as a pastry chef at Ris, but his health quickly began to decline. Just about a week after his diagnosis, Sasser had to stay home from work, feeling too weak and ill to keep up with the demands of his job. Some reports say he underwent some palliative treatments to help make him more comfortable.

Unfortunately, the aggressive cancer took its toll on Sasser quickly. He passed away in August 2013, just one month after his diagnosis. Sasser was only 44 years old at his untimely passing, but he had accomplished a lot in his life. In addition to his culinary aspirations, Sasser had kept up with his AIDS activism as a board member of the AIDS Alliance for Children, Youth and Families. He was also an active mentor for the youth in his community.

Though mesothelioma abruptly ended his culinary career and advocacy work, Sasser will always be remembered for his bravery in the face of adversity and his important contributions to bringing awareness to HIV and AIDS.

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