She knows more about the effects of asbestos than she ever wanted to — so she's sharing her story.
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When Heather Von St. James was 36 years old, her doctor gave her a horrible diagnosis.

When the doctor said the words "malignant pleural mesothelioma," Heather was terrified. Most people who receive that diagnosis only live for a couple more years, tops. And Heather had a 3-month-old daughter to care for.

But what even is malignant pleural mesothelioma, and how had Heather gotten it? Mesothelioma is a rare cancer that can form in the lining of internal organs like, in Heather's case, the lungs. It is most commonly caused by exposure to asbestos.


Heather with her daughter in 2005.

Asbestos. Isn't that the scary stuff you find in old buildings?

Indeed it is. Asbestos is a naturally occurring mineral loaded with characteristics that make it very desirable as a building material. It absorbs sound, it's very strong, it's resistant to fire, heat, electrical, and chemical damage, and it's also pretty cheap stuff (not counting the toll on human lives...).

It's not just in old buildings — asbestos is still used in drywall, plaster, fire blankets, vinyl flooring, vehicle brakes, and a host of other frighteningly common products.

Of course, in addition to all its desirable characteristics, asbestos also happens to be pretty deadly: inhaling those teensy tiny asbestos fibers can cause fatal illnesses. It's particularly dangerous if you're exposed long-term — day after day, month after month. Like if you work with asbestos. Or maybe ... if your dad does.

Larger pieces of asbestos (via Thinkstock).

How do you end up with a cancer you've never heard of?

"I was a new mom," Heather explained, "and I was diagnosed with this really rare cancer that I'd never heard of except for in commercials on TV." But as soon as she heard the word "asbestos," she knew where she'd been exposed.

See, Heather's dad worked in construction when she was little and was often handling materials laden with asbestos. She told me, "I would hug him when he would come home. I would wear his jacket to go out ... and do chores in the yard. ... And his car was always covered in dust. That's where I was exposed. And 30 years later, I'm sick because of it. It made me angry."

Rightfully so.

Heather as a child with her family.

Stories like Heather's are far too common.

According to the World Health Organization, over 107,000 people die each year from asbestos-related illnesses due to occupational exposure. That doesn't even count people who've been exposed to asbestos in the natural environment, or people like Heather, or the friends and family of those who are occupationally exposed.

"I was the [patient] ... that the asbestos companies never wanted to admit there was."

Heather explains, "I was the [patient] ... that the asbestos companies never wanted to admit there was: the daughters, the wives of the asbestos workers."

Tell me again why this stuff is still legal in the U.S.?

Yep, that's right, asbestos is still legally used in many products in the U.S. today.

It's legal today despite the fact that the adverse health effects of asbestos exposure were first documented in 1899 and have been proven time and again over the past century. And despite the fact that dozens of other countries (including the United Kingdom, France, Germany, Ireland, Japan, Chile, Australia, Turkey, and many others) have banned it entirely.

In the 1970s, the U.S. Environmental Protection Agency (EPA) banned a few limited asbestos uses — such as use in many spray-applied fireproofing and insulating products. And in 1989, the EPA tried to take more aggressive action with the Asbestos Ban and Phaseout Rule, which was intended to phase out asbestos entirely.

Needless to say, the ban didn't last. In 1991, the asbestos industry sued the EPA, arguing that there wasn't enough evidence of health risk and that a complete ban was not the "least burdensome" way to abate any proven risk. A federal court ruled in favor of the asbestos industry, and although minor victories have since been made, attempts to outright ban asbestos were all but abandoned.

What does Heather have to say about all this? “Money speaks in government, and [asbestos] is a big industry. The only reason it's still [being used and imported] is money. It's down and out corporate greed."

Your family could be at risk — but don't panic (yet).

Asbestos-related illnesses are caused by inhaling asbestos fibers. If the material is left undisturbed and intact — maybe buried in a wall or beneath subsequent layers of flooring — the risks are minimal.

We all frequent buildings laden with asbestos nearly every day.

But if a building is more than a couple decades old, be aware that it's likely to have asbestos hiding somewhere — maybe in its insulation, in its popcorn-style ceilings, or in its vinyl floor tiles.

We all frequent buildings laden with asbestos nearly every day. In most non-occupational situations, the risks are minimal. But if you're planning any home renovation projects, or if you suspect that you may have exposed asbestos in your home, you're going to want to hire a professional to come deal with it.

Professionals removing materials containing asbestos (via Thinkstock).

Nearly 10 years have passed since Heather's terrifying diagnosis.

After intensive medical treatment — including a lung removal — Heather's life has changed dramatically. She wasn't able to return to her previous job, so she now spends much of her time as a patient advocate, supporting others and sharing her own story. She explains, "I'm very public, because I don't want anybody to have to suffer through this alone. I want them to know that there are people out there living with this disease and thriving."

That Heather has survived so long is extremely rare for a mesothelioma patient. And because of that, her story is one of hope. She advocates finding better treatment and a cure for all asbestos-related illnesses, as well as an outright ban on all asbestos.

"I'm very public, because I don't want anybody to have to suffer through this alone. I want them to know that there are people out there living with this disease and thriving."

What does Heather wish everyone knew about asbestos? She says, "I wish the general population knew how dangerous [asbestos] is, and the fact that it's not banned in the U.S." Asbestos is simply far too dangerous to be legal.

Hear the story from Heather herself below, or check out her blog.

Photo by NeONBRAND on Unsplash

I'll never forget the exhilaration I felt as I headed into the city on July 3, 2018. My pink hair was styled. I wore it up in a high ponytail, though I left two tendrils down. Two tendrils which framed my face. My makeup was done. I wore shadow on my eyes and blush on my cheeks, blush which gave me color. Which brought my pale complexion to life. And my confidence grew each time my heels clacked against the concrete.

My confidence grew with each and every step.

Why? Because I was a strong woman. A city woman. A woman headed to interview for her dream job.

I nailed the interview. Before I boarded the bus back home, I had an offer letter in my inbox. I was a news writer, with a salary and benefits, but a strange thing happened 13 months later. I quit said job in an instant. On a whim. I walked down Fifth Avenue and never looked back. And while there were a few reasons why I quit that warm, summer day: I was a new(ish) mom. A second-time mom, and I missed my children. Spending an hour with them each day just wasn't enough. My daughter was struggling in school. She needed oversight. Guidance. She needed my help. And my commute was rough. I couldn't cover the exorbitant cost of childcare. The real reason I quit was because my mental health was failing.


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Photo by NeONBRAND on Unsplash

I'll never forget the exhilaration I felt as I headed into the city on July 3, 2018. My pink hair was styled. I wore it up in a high ponytail, though I left two tendrils down. Two tendrils which framed my face. My makeup was done. I wore shadow on my eyes and blush on my cheeks, blush which gave me color. Which brought my pale complexion to life. And my confidence grew each time my heels clacked against the concrete.

My confidence grew with each and every step.

Why? Because I was a strong woman. A city woman. A woman headed to interview for her dream job.

I nailed the interview. Before I boarded the bus back home, I had an offer letter in my inbox. I was a news writer, with a salary and benefits, but a strange thing happened 13 months later. I quit said job in an instant. On a whim. I walked down Fifth Avenue and never looked back. And while there were a few reasons why I quit that warm, summer day: I was a new(ish) mom. A second-time mom, and I missed my children. Spending an hour with them each day just wasn't enough. My daughter was struggling in school. She needed oversight. Guidance. She needed my help. And my commute was rough. I couldn't cover the exorbitant cost of childcare. The real reason I quit was because my mental health was failing.


Keep Reading Show less
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Each year, an estimated 1.8 million people in the United States are affected by cancer — most commonly cancers of the breast, lung, prostate, and blood cancers such as leukemia. While not everyone overcomes the disease, thanks to science, more people are surviving — and for longer — than ever before in history.

We asked three people whose lives have been impacted by cancer to share their stories – how their lives were changed by the disease, and how they're using that experience to change the future of cancer treatments with the hope that ultimately, in the fight against cancer, science will win. Here's what they had to say.

Celine Ryan, 55, engineer database programmer and mother of five from Detroit, MI

Photo courtesy of Celine Ryan

In September 2013, Celine Ryan woke up from a colonoscopy to some traumatic news. Her gastroenterologist showed her a picture of the cancerous mass they found during the procedure.

Ryan and her husband, Patrick, had scheduled a colonoscopy after discovering some unusual bleeding, so the suspicion she could have cancer was already there. Neither of them, however, were quite prepared for the results to be positive -- or for the treatment to begin so soon. Just two days after learning the news, Ryan had surgery to remove the tumor, part of her bladder, and 17 cancerous lymph nodes. Chemotherapy and radiation soon followed.

Ryan's treatment was rigorous – but in December 2014, she got the devastating news that the cancer, once confined to her colon, had spread to her lungs. Her prognosis, they said, was likely terminal.

But rather than give up hope, Ryan sought support from online research, fellow cancer patients and survivors, and her medical team. When she brought up immunotherapy to her oncologist, he quickly agreed it was the best course of action. Ryan's cancer, like a majority of colon and pancreatic cancers, had been caused by a defect on the gene KRAS, which can result in a very aggressive cancer that is virtually "undruggable." According to the medical literature, the relatively smooth protein structure of the KRAS gene meant that designing inhibitors to bind to surface grooves and treat the cancer has been historically difficult. Through her support systems, Ryan discovered an experimental immunotherapy trial at the National Institutes of Health (NIH) in Bethesda, MD., and called them immediately to see if she was eligible. After months of trying to determine whether she was a suitable candidate for the experimental treatment, Ryan was finally accepted.

The treatment, known as tumor-infiltrating lymphocyte therapy, or TIL, is a testament to how far modern science has evolved. With this therapy, doctors remove a tumor and harvest special immune cells that are found naturally in the tumor. Doctors then grow the cells in a lab over the next several weeks with a protein that promotes rapid TIL growth – and once the cells number into the billions, they are infused back into the patient's body to fight the cancer. On April 1, 2015, Ryan had her tumor removed at the NIH. Two months later, she went inpatient for four weeks to have the team "wash out" her immune system with chemotherapy and infuse the cells – all 148 billion of them – back into her body.

Six weeks after the infusion, Ryan and Patrick went back for a follow-up appointment – and the news they got was stunning: Not only had no new tumors developed, but the six existing tumors in her lungs had shrunk significantly. Less than a year after her cell infusion, in April 2016, the doctors told Ryan news that would have been impossible just a decade earlier: Thanks to the cell infusion, Ryan was now considered NED – no evaluable disease. Her body was cancer-free.

Ryan is still NED today and continuing annual follow-up appointments at the NIH, experiencing things she never dreamed she'd be able to live to see, such as her children's high school and college graduations. She's also donating her blood and cells to the NIH to help them research other potential cancer treatments. "It was an honor to do so," Ryan said of her experience. "I'm just thrilled, and I hope my experience can help a lot more people."

Patrice Lee, PhD, VP of Pharmacology, Toxicology and Exploratory Development at Pfizer

Photo courtesy of Patrice Lee

Patrice Lee got into scientific research in an unconventional way – through the late ocean explorer Jacques Cousteau.

Lee never met Cousteau but her dreams of working with him one day led her to pursue a career in science. Initially, Lee completed an undergraduate degree in marine biology; eventually, her interests changed and she decided to get a dual doctoral degree in physiology and toxicology at Duke University. She now works at Pfizer's R&D site in Boulder, CO (formerly Array BioPharma), leading a group of scientists who determine the safety and efficacy of new oncology drugs.

"Scientists focused on drug discovery and development in the pharmaceutical industry are deeply committed to inventing new therapies to meet unmet needs," Lee says, describing her field of work. "We're driven to achieve new medicines and vaccines as quickly as possible without sacrificing safety."

Among the drugs Lee has helped develop during her career, including cancer therapies, she says around a dozen are currently in development, while nine have received FDA approval — an incredible accomplishment as many scientists spend their careers without seeing their drug make it to market. Lee's team is particularly interested in therapies for brain metastases — something that Lee says is a largely unmet need in cancer research, and something her team is working on from a variety of angles. "Now that we've had rapid success with mRNA vaccine technology, we hope to explore what the future holds when applying this technology to cancers," Lee says.

But while evaluating potential cancer therapies is a professional passion of Lee's, it's also a mission that's deeply personal. "I'm also a breast cancer survivor," she says. "So I've been on the other side of things and have participated in a clinical trial."

However, seeing how melanoma therapies that she helped develop have affected other real-life cancer patients, she says, has been a highlight of her career. "We had one therapy that was approved for patients with BRAF-mutant metastatic melanoma," Lee recalls. "Our team in Boulder was graced by a visit from a patient that had benefited from these drugs that we developed. It was a very special moment for the entire team."

None of these therapies would be available, Lee says without rigorous science behind it: "Facts come from good science. Facts will drive the development of new drugs, and that's what will help patients."

Chiuying "Cynthia" Kuk (they/them) MS, 34, third-year medical student at Michigan State University College of Human Medicine

Photo courtesy of Cynthia Kuk

Cynthia Kuk was just 10 years old when they had a conversation that would change their life forever.

"My mother, who worked as a translator for the government at the time, had been diagnosed with breast cancer, and after her chemotherapy treatments she would get really sick," Kuk, who uses they/them pronouns, recalls. "When I asked my dad why mom was puking so much, he said it was because of the medicine she was taking that would help her get better."

Kuk's response was immediate: "That's so stupid! Why would a medicine make you feel worse instead of better? When I'm older, I want to create medicine that won't make people sick like that."

Nine years later, Kuk traveled from their native Hong Kong to the United States to do exactly that. Kuk enrolled in a small, liberal arts college for their Bachelor's degree, and then four years later started a PhD program in cancer research. Although Kuk's mother was in remission from her cancer at the time, Kuk's goal was the same as it had been as a 10-year-old watching her suffer through chemotherapy: to design a better cancer treatment, and change the landscape of cancer research forever.

Since then, Kuk's mission has changed slightly.

"My mom's cancer relapsed in 2008, and she ended up passing away about five years after that," Kuk says. "After my mom died, I started having this sense of urgency. Cancer research is such that you work for twenty years, and at the end of it you might have a fancy medication that could help people, but I wanted to help people now." With their mother still at the forefront of their mind, Kuk decided to quit their PhD program and enter medical school.

Now, Kuk plans to pursue a career in emergency medicine – not only because they are drawn to the excitement of the emergency room, but because the ER is a place where the most marginalized people tend to seek care.

"I have a special interest in the LGBTQ+ population, as I identify as queer and nonbinary," says Kuk. "A lot of people in this community and other marginalized communities access care through the ER and also tend to avoid medical care since there is a history of mistreatment and judgement from healthcare workers. How you carry yourself as a doctor, your compassion, that can make a huge difference in someone's care."

In addition to making a difference in the lives of LGBTQ+ patients, Kuk wants to make a difference in the lives of patients with cancer as well, like their mother had.

"We've diagnosed patients in the Emergency Department with cancer before," Kuk says. "I can't make cancer good news but how you deliver bad news and the compassion you show could make a world of difference to that patient and their family."

During their training, Kuk advocates for patients by delivering compassionate and inclusive care, whether they happen to have cancer or not. In addition to emphasizing their patient's pronouns and chosen names, they ask for inclusive social and sexual histories as well as using gender neutral language. In doing this, they hope to make medicine as a whole more accessible for people who have been historically pushed aside.

"I'm just one person, and I can't force everyone to respect you, if you're marginalized," Kuk says. "But I do want to push for a culture where people appreciate others who are different from them."