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Lauren Schuler, a retired FBI special agent and mother of two, is among thousands of first responders who have gotten sick. She’s a survivor of multiple myeloma, an incurable blood cancer.
Schuler was among investigators inside the Pentagon in the days and weeks after the attack, combing through rubble and looking for evidence. FBI investigators were able to recover the black box from the plane and at least 2 of the hijackers’ IDs.
She also helped recover the people who didn’t survive.
"It was humbling when you came out of that building, and I’m sure any of the sights were like this, with human remains," she said. "People stopped what they were doing. There was such reverence and honor."
In the first few days, she says there was minimal protective gear: hospital face masks and rubber gloves, and they worked wearing t-shirts.
"It was interesting that nobody really talked too much about it," Schuler said. "I think we all knew inside that this could be problematic."
There was such a lack of basic supplies, FOX 5 news coverage from the time showed the public was urged to donate things like latex gloves, medical masks, packing tape, toiletries and socks.
Schuler said when she was working around the collapsed area near the nose of the plane, there was a liquid covering the ground.
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"I end up sloshing through the water. It’s into my skin and my shoes and the water’s contaminated with jet fuel, chemicals from plane, asbestos from the building, dust from the building and human remains, and that’s all on my skin," she said. "And to compound that, we still didn’t have respirators, so I’m still in a little hospital mask."
She said several days in, they were given respirators and better protective equipment and a decontamination station was set up. But she believes the day she was covered in that liquid had lasting impacts. Benzene, which is in jet fuel, has been linked to blood cancer.
More than 15 years passed before she realized her health was failing. A physical revealed she had pancreatitis and kidney failure.
It was a shock that led to one much bigger: at 49-years-old she was diagnosed with multiple myeloma. She did a Google search because she hadn’t heard of it and found articles about the prevalence in that cancer among 9/11 first responders.
She learned about the FBI agents doing the same work she was doing who were already gone, including Bob Roth and Wesley Yoo.
"Bob survived 18 months after being diagnosed in 2006," she said.
Yoo battled for 10 years.
"He worked up until the day before he passed away. He was absolutely determined to survive. And I’ve now gotten to be friends with the wives of both of these men," said Schuler.
She said she’s speaking out now after two decades in honor of those who gave it all. Her cancer is in remission and after years of dialysis and chemotherapy, as well as a kidney transplant in January, she said she’s ready to do much more.
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"I’ve set a goal for myself in memory of Wes and Bob and other first responders to climb a mountain to do some fundraising to help find a cure," she said.
She’ll do it through the charity Moving Mountains for Multiple Myeloma. Schuler is training to make a climb with her daughter next year.
"I want those people to be remembered," she said.
More than a memory, 9/11 is part of her. And even with the lasting impacts, she said she wouldn’t have it any other way.
"I don’t think any of us, no matter what our situation is after 9/11 would trade, could trade that at all," she said.
You can find more information on multiple myeloma here, and more information on the 9/11 Victim Compensation Fund here.
A new report by VCF says more people have died due to 9/11 related illnesses than from the attack itself.