Carol Marley wants everyone to know what a life-threatening cancer diagnosis looks like in America today.
Yes, it's the chemotherapy that leaves you weak and unable to walk across the room. Yes, it's the litany of tests and treatments – the CT scans and MRIs and biopsies and endoscopies and surgeries and blood draws and radiation and doctor visits. Yes, it's envisioning your funeral, which torments you day and night.
But none of these is her most gnawing, ever present concern.
That would be the convoluted medical bills that fill multiple binders, depleted savings accounts that destroy early retirement plans and so, so many phone calls with insurers and medical providers.
"I have faith in God that my cancer is not going to kill me," says Marley, who lives in Round Rock, Texas. "I have a harder time believing that this is gonna get straightened out and isn't gonna harm us financially. That's the leap of faith that I'm struggling with."
Coping with the financial fallout of cancer is exhausting — and nerve-wracking. But the worst part, Marley says, is that it's unexpected.
When she was diagnosed with adenocarcinoma of the pancreas head in July, she didn't anticipate so many bills, or so many billing mistakes. After all, she is a hospital nurse with good private insurance that has allowed her access to high-quality doctors and hospitals.
Randall Marley, a computer systems engineer, says he frequently comes home from work to find his wife feeling unwell and frustrated about having spent a precious day of her recovery making phone calls to understand and dispute medical bills. One recent night she was in tears and "emotionally at a breaking point," he says. "The hardest part of this is seeing the toll it's taken on my wife."
Stress-inducing bills accumulate
More than 42 percent of the 9.5 million people diagnosed with cancer from 2000 to 2012 drained their life's assets within two years, according to a study published last year in the American Journal of Medicine. Cancer patients are 2.65 times more likely to file for bankruptcy than those without cancer, and bankruptcy puts them at a higher risk for early death, according to research.
But those statistics don't convey the daily misery of a patient with a life-threatening disease trying to navigate the convoluted financial demands of the U.S. health care system while simultaneously facing a roller coaster of treatment and healing.
Stephanie Wheeler, a professor at the University of North Carolina at Chapel Hill, said the number of bills coming from different providers can be overwhelming.
"It's oftentimes multiple different bills that are rolling in over a period of several months and sometimes years," says Wheeler, who has conducted survey research with metastatic cancer patients. "As those bills start to accumulate, it can be very stress inducing."
Given that many patients can't work during treatment, these bills may force even relatively well-to-do cancer patients to take out second mortgages, spend college savings or worry about leaving debt behind for their families, Wheeler says.
Carol Marley is a slight woman who dotes on her two dogs and is involved in her church. Her 88-year-old father, who has dementia, had moved in a few years earlier. She and her husband, Randall, pride themselves on living frugally. They pay their credit card off every month and don't have car payments.
Carol and her daughter, June Marley, who is a second-year college student, have health insurance through Carol's employer, Ascension Health, a large faith-based health care system with facilities across the nation. Carol's husband has separate insurance through his job.
They were hoping to retire early, buy an RV and drive around the country. Instead, they see their meticulous plans disappearing, even if Carol recovers.
Their high-deductible insurance policy meant they had to spend $6,000 before their insurance started covering her treatment expenses. They hit their annual out-of-pocket maximum of $10,000 well before the year was over.
But Carol says she was prepared for that. "What I didn't anticipate is the knock-down, drag-out fight that I would have to engage in to get people to see there were errors and address it."
Since she's unable to work, the family lost her nursing salary.
"Money is not coming in, and it's going out by the thousands," she says.
From nurse to patient
Carol had treated cancer patients before. She had seen them come in with unexplained aches and leave with devastating diagnoses. Now it was her turn.
Though she didn't recognize it at the time, her symptoms were textbook. Fatigue. Back pain. Weight loss. In July, doctors told her she had pancreatic cancer.
Her first thought was that she was going to die. One nurse friend asked if she had her affairs in order. That's because pancreatic cancer is usually discovered too late. Just 9 percent of patients are alive five years after diagnosis, compared with 90 percent of breast cancer patients.
Carol knew she was lucky. Hers hadn't spread. She might be able to undergo surgery. But first, four months of chemotherapy and five weeks of radiation.
The chemotherapy — seven or eight rounds, she can't quite remember — drained her. "I couldn't put words together in my head," she says. She had muscle spasms and developed fevers that landed her in the emergency room.
As she became weaker, Carol realized she could no longer care for her father at home. On a recent morning in early January, she sat down with a nurse from a memory-care facility where a space had become available. Holding back tears, Carol told the nurse she knew this day would come. "I didn't think it would be so soon, and I didn't know under these circumstances."
Different insurers lead to different bills
Later that same day, Carol's energy was up. She adjusted the colorful scarf on her head, turned on her computer and pulled out a pen. Some days she spends hours trying to clarify and fix medical bills. "But I don't do that frequently because it is so fruitless and it is stressful," she said.
Often, she is just trying to figure out what different bills mean. "Even as a nurse, I feel like it's impossible to understand," she said. "I can't make heads or tails of it."
Sometimes there are errors.
Part of the problem, she contends, is that one insurance company covers visits with Ascension providers and hospitals and another company covers pharmacy claims, specialty drugs and providers outside Ascension's network. Some of the bills, including a $1,400 one from an ER visit — were sent to the wrong insurer, she says.
Carol cites other issues. An $18,400 chemotherapy bill was submitted with missing information and then denied because it arrived late. An $870 MRI bill was denied because the provider said there was no pre-authorization.
"It's not any one individual. It's not any one system or provider," she says. "The whole system is messed up. ... There's no recourse for me except to just keep making phone calls."
On this particular afternoon, Carol has a long list of calls to make. One to figure out why she couldn't access her insurance claims online. Another to a medical provider that urged her to pay $380, even though it acknowledged that it owed her about $80 of that total.
Someone who answers the phone suggests again that Carol pay the entire amount. "Once it's posted to your account and it goes through, we would send you a check," the woman says.
Carol shakes her head. "I'm sure y'all are fine people over there, but I'm not trusting a refund to come," she responds, reflecting on her experience as a consumer of cancer care. "The problem is, they want their money and they are going to get it one way or the other."
As for her hospital bills, Ascension declined to comment, citing protected health information. But spokesman Nick Ragone said, "The matter at issue was favorably resolved."
He didn't say which issue was resolved.
Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation and is not affiliated with Kaiser Permanente.
An earlier version of this article said cancer patients are 2.5 times more likely to file for bankruptcy than those without cancer. Cancer patients are actually 2.65 times more likely to do so.
MARY LOUISE KELLY, HOST:
This is what having cancer in the U.S. these days entails - grueling treatment, yes, but also surprising medical expenses, insurance denials, depleted savings accounts, even bankruptcy. Anna Gorman reports from Texas on one family coping with the financial fallout of cancer.
ANNA GORMAN, BYLINE: Carol Marley is 50 years old. She has pancreatic cancer. Every day counts. And every day brings a frustrating phone call with an insurer or medical provider.
CAROL MARLEY: This is Carol Marley calling. I'm getting ready to be going out of town for a treatment for my cancer, so I really - I need some help. If you could please call me today, I would appreciate it.
GORMAN: Even though pancreatic cancer is one of the deadliest cancers, Carol's doctors caught it earlier than most.
C MARLEY: I have faith in God that my cancer is not going to kill me. I have a harder time believing that this is going to get straightened out and isn't going to harm us financially.
GORMAN: Carol is a nurse near Austin, Texas. She was diagnosed in July, and the cancer hasn't spread beyond her pancreas. Her health and the finances weigh on her.
C MARLEY: It's incredibly stressful. I mean, I don't sleep at night. I take anxiety medication, you know, more often than I want to.
(SOUNDBITE OF DOG BARKING)
C MARLEY: Rascal, lay down.
GORMAN: Carol has a husband, a daughter in college and two small dogs. Her father, who has dementia, also lives with her. But after months of chemotherapy, Carol realized that she could no longer care for him. She found a place for him in a memory care home.
C MARLEY: And I knew that there would come a day. I didn't think it would be so soon, and I didn't know, you know, under these circumstances.
GORMAN: Families facing cancer have to make dramatic choices, like spending through college savings or taking out second mortgages. Stephanie Wheeler is an associate professor at the University of North Carolina at Chapel Hill.
STEPHANIE WHEELER: In some cases, patients are having to work longer than they anticipated and make very different decisions about their household than they would have otherwise had to make.
GORMAN: Carol and her husband, Randall, pride themselves on living frugally. They pay their credit card every month and keep an emergency fund. He says they planned to retire early, but that's on hold.
RANDALL MARLEY: We're at a standstill.
GORMAN: But first, they have to get through treatment. The couple has hope, but they're also realistic.
MARLEY: You know, I have to confront the possibility that she's not going to make it through this.
GORMAN: Randall says the hardest part for him has been the toll taken on his wife - the pain, the uncertainty. They worry about finances, both now and in the future. Carol had to stop working and had to apply for long-term disability.
C MARLEY: We're just bleeding money, you know, with payments.
GORMAN: Carol has private insurance through her work. Still, they're out thousands and thousands, and that's before radiation and surgery. She says managing cancer and cancer bills is a full-time job, one she isn't trained for.
C MARLEY: Even as a nurse, I feel like it's impossible to understand.
GORMAN: She can spend hours a day clarifying bills or trying to fix mistakes - an $18,000 chemotherapy bill not sent to insurers on time, a $900 MRI bill denied incorrectly.
C MARLEY: There's no recourse for me except to just keep making phone calls.
GORMAN: This afternoon, Carol's trying to get a provider that overcharged her to credit her account. It's taken months. After 15 minutes, the computer system crashes. The clerk apologizes. Carol puts down the phone and puts her head on the desk. She's feeling overwhelmed.
(SOUNDBITE OF DOGS BARKING)
GORMAN: She joins her father downstairs. The dogs jump on her lap.
C MARLEY: Have you fed these dogs today?
UNIDENTIFIED PERSON: I don't feed dogs (laughter).
C MARLEY: These aren't your dogs?
UNIDENTIFIED PERSON: I don't think so.
C MARLEY: (Laughter) I'm teasing you.
GORMAN: Soon, Carol will start radiation. But in this moment, she tries not to think about what's to come. I'm Anna Gorman in Round Rock, Texas.
(SOUNDBITE OF GEOFF FARINA SONG, "PRICK UP YOUR EARS")
KELLY: And Anna Gorman is with our partner, Kaiser Health News. Transcript provided by NPR, Copyright NPR.