20 Years of Patient Advocacy: Stories From The Mesothelioma Center

Steve found out he had mesothelioma because a surgeon was operating on his gallbladder and saw tumors. He was fit and still without real symptoms, working as an assistant principal in a school. Steve was anxious when we first talked and he was trying to make sense of his diagnosis.

The first thing we worked on together was getting him to a mesothelioma specialist. Since then, we’ve talked about looking ahead to the one-year mark since his diagnosis. He’s already told me he wants to share his story with others once he gets there.

Linda was determined to have surgery. But her surgery kept getting delayed while her care team reviewed whether surgery was the right option for her.

I helped her get a second opinion, and after talking through her options, she remained committed to surgery. I also got to know Linda’s two daughters, and they became part of the conversations we had over the years.

Ariel was 33 and facing a surgery that would take 17 hours when she first got on the phone with me. What she needed most in that call was someone to tell her the truth, that this diagnosis is serious, but there’s real reason for hope.

I walked her through her diagnosis and what the surgery would involve, and I connected her with a fellow survivor who’d been diagnosed with the same disease when she was young also and is now a long-term survivor. Speaking with a survivor gave Ariel a connection to someone who actually understood what she was facing. She came through her surgery, and I still check in with her today.

Kim was a full-time nurse with two kids and a husband, and found herself now also managing a mesothelioma diagnosis. Her best friend Jeanette called me to help Kim gather information and resources.

Four years later, we’re all still in touch. I check in to see how Kim’s doing. Kim and Jeanette remind me of my own best friends, the two of them looking out for each other, making me laugh every time we talk. What Jeanette and I discussed together in that first conversation led to Kim getting the surgery she needed.

Diana knew exactly what she wanted before she ever talked to me: surgery. She was around 74, and not every doctor would have considered her eligible for an aggressive treatment like surgery. But she was determined to see the top specialists and decide for herself.

I got her in front of two of them, and after weighing both of their recommendations, she chose her path and went through with it. I stayed in touch with her for years afterward and got to follow all of her adventures.

Brandon was 23 when he was diagnosed with pleural mesothelioma, and his wife came to us first, looking for someone with real experience treating this rare disease. Getting him in front of the right specialist meant pulling in help from across our team.

He and his wife have been through a lot already with consultations, referrals and a legal case. Then recently, his insurance stopped covering the testing his clinical trial requires. We’re working through that with them.

Carla called us by mistake. She’d just been diagnosed with mesothelioma that day and was trying to reach the doctor who diagnosed her, not us. I picked up anyway, and we ended up talking about what she was facing.

Her treatment hasn’t been simple. Surgery was scheduled and canceled more than once before she ultimately started immunotherapy. I’ve stayed in touch with her through all of it. The last time I saw her in person, the difference from the year before was remarkable.

Jim had an asbestosis diagnosis and a small settlement from 20 years ago. When his wife Carolyn called about his new pleural mesothelioma diagnosis, she wanted a specialist for her husband.

I got them scheduled with a mesothelioma expert, and we talked about the financial side of making his care possible. Carolyn was concerned about medical expenses and I explained how we could connect them to legal experts who could help them pursue financial assistance. Carolyn was surprised with everything we could do for them. They moved forward with a new medical specialist and legal help with experience in what Jim’s dealing with now.

When I spoke with Richard’s wife, Lynne, we talked about what was going on with Richard and the financial concerns that came with his diagnosis. Richard had worked in construction, where he had direct asbestos exposure, and had secondhand exposure as a kid through his father.

We talked about financial assistance and the legal resources that might be available to them. Lynne had questions about where to turn and what options they had, and I was able to help her work through those questions.

Donald’s a Navy veteran who had already handled his VA claims himself. He and his wife reached out to me for help with the financial side of his diagnosis, knowing that VA benefits wouldn’t cover every expense related to it. As we talked through their options, legal help became part of the conversation.

I gave them two options, including a national firm that had been handling Navy asbestos cases since the 1980s. They reached out to the national firm but didn’t commit right away. Later, Donald’s wife told me about a friend in Texas who had gone through his own mesothelioma case and used another firm. She was considering that firm for Donald, too, when they read a news article that made them rethink their options and they wanted to get my take on it.

The phone number on Daniel’s form was wrong, so I couldn’t reach him at first. I tracked down the right number and kept calling because I wanted to make sure I could connect with him and see what support he needed. After two weeks, he finally picked up.

Daniel was 32, newly diagnosed with pleural mesothelioma, and not sure yet whether he wanted to pursue legal options for financial assistance but was curious. So I walked him through what proving his exposure could actually mean for him, and he decided to talk to an attorney. Not long after, Daniel needed help with the financial side of his diagnosis. We talked about financial assistance and his legal options, and he decided to connect with a law firm the same day we finally spoke.

Herbert contacted me because he wanted to talk through his legal options. He was 79, a Navy veteran and had already spoken with four different firms on his own. He had a firm in mind before we talked, so we started there and talked through his experience and what he was looking for.

As we talked, we discussed his asbestos exposure history and whether it would help to speak with someone who had experience with his particular type of military exposure. I connected him with an investigator who had served on the same kind of ship Herbert did. They spoke once, and Herbert decided to move forward with that option within a few days.

Bill didn’t have any family. What he had was a woman he called his “lady friend,” and more than anything else, he wanted to make sure she’d be taken care of if something happened to him.

He asked me to help him find the right help to secure some compensation, not for himself, but for her. He later called and thanked me for helping connect him with the right legal help for his needs. Bill is definitely someone who’s stayed with me the most.

Vicki’s first call to me was after her husband had just been diagnosed with peritoneal mesothelioma. He was losing so much weight that initially she just wanted our nutrition guide to try to find a way to help him.

Months later, we’re still talking regularly. The conversation has expanded to other needs. Her husband can no longer work, so Vicki’s the only source of income. She asked about financial aid options and how to choose the right legal help to pursue it. Our conversations gradually shifted from nutrition to questions about what came next.

Kevin came to us a year or two after his mesothelioma diagnosis, after chemo and surgery and while starting a third round of treatment. He wasn’t looking for another doctor’s opinion. He wanted to talk with other people who understood what he was going through.

He found that connection in our support group and has stayed involved. Now he often helps newly diagnosed patients who are going through some of the same things he has experienced.

Betty doesn’t have anyone else to call. No family, no caregiver, nobody checking in on her but me. So I check in on her, regularly, just to see how she’s doing.

She’s been in treatment, and it’s come with some good moments as well as some challenges. When we hit the one-year mark since her diagnosis, I called just to celebrate with her. Moments like that are some of my favorite conversations.

She’s in her 80s and is a retired schoolteacher living alone in upstate New York. She’s always been very clear about wanting to remain independent. Early on, she told me she didn’t need financial assistance because she doesn’t have anyone depending on her.

Lately, though, we’ve been talking about what could happen if her condition gets worse and she needs care she can’t manage on her own. I’m working with her to look at those options to help ensure she can maintain as much independence as possible.

A family called me about their father because they wanted to talk through their hospice options. They were also dealing with concerns from a previous relative’s hospice experience at a local facility, so they wanted to understand what other options were available for their dad.

I got everyone together on a Zoom call, and we talked through the practical details, including the different types of hospice care, what providers offer and what questions to ask when choosing one. They ultimately chose 24/7 in-home hospice, and I also connected them with legal help to cover the cost of that level of care.

Berlinda was a science teacher and a minister, and when I first spoke with her in July 2024, right after her diagnosis, she was one of the most positive people I’d ever talked to. That’s not typical for someone who just found out they have a rare, aggressive cancer, but that’s just how she was.

She spent the time we stayed in touch sharing her story everywhere she could, in survivor stories, on her own podcast, with her congregation. Berlinda passed away. I think about her outlook often, and how she chose to spend her time helping the people who’d come after her.