The first hit came right before Christmas. Kerry Beldin had stage 4 lung cancer — which is nearly always a death sentence.
But the university professor had reason to hope. Her medical team saw treatment potential in her relative youth (Kerry is 42), her relatively good health (she's a nonsmoker) and the relatively few tumors (just two).
Her doctors told her they would fight it aggressively — beginning with radiation to alleviate the pain from the tumor on her hip.
So Kerry went to the Nebraska Medical Center, where she received 22 radiation treatments, including 10 of a special kind that can target the tumor with a higher dose while sparing surrounding tissue and organs. This is called intensity-modulated radiation therapy, or IMRT.
And it went so well that Kerry and her medical team planned to do a similar kind of highly-directed radiation, SBRT, for the tumor on her lung.
Everyone told her to stay positive, and she did. She called cancer her "crash course in gratitude" and was actually able to see her life with new clarity. Time with her mom mattered. Most everything else did not.
But then came the second hit: a letter from the insurance company.
Blue Cross Blue Shield of Nebraska said it would not cover any of the special, more expensive radiation treatments, past or future. Blue Cross told Kerry that it was "pleased to provide your health care coverage" but not "these services," which it considered "investigative." The letter basically said her condition was fatal and went on to quote the company's own expert:
"The patient has bone metastasis from non-smallcell lung cancer, and hence palliative radiation therapy is appropriate. ... There is no strong clinical evidence to suggest that IMRT radiation would change outcome in this case."
The key word: "palliative." The word means relieving pain, not solving the problem. It's used to describe end of-life care. Kerry, a social worker by training, knew its meaning all too well.
"It's the most upsetting thing I've ever read," she said. It made her feel as though "regardless of how (Dr. Weining Zhen) decides to treat me, the outcome of my case is the same. Regardless of what he does — I'm going to die. It's just so offensive."
Kerry's situation is a frustratingly familiar one that shows a stark reality of health care. Having insurance is no guarantee that patients get the care they want. Insurance companies have to balance providing care with keeping costs down. They go with what they think works best, versus something they view as less established.
Doctors and insurance companies don't always agree, adding to a patient's frustration. Neither Kerry's doctors nor Blue Cross would talk to me about her case, making it hard to understand the differing views on her treatment options.
For Kerry, the insurance rigmarole compounds the trauma of her illness and leaves her feeling that she has no voice in her own care.
"This is a decision I should have been able to make," Kerry said. "You don't choose this diagnosis. You don't choose to go through all of this. There are very few choices I have — this is one of them. And it's been taken away by someone who doesn't even know me and isn't listening to me."
Kerry's radiation oncologist, Dr. Zhen, tried to make Kerry's case to Blue Cross.
He cited her age, her "excellent functional status," the single tumor outside the lung — as opposed to more — and the "very low tumor burden" in her lung as reasons to pursue aggressive treatment. He said IMRT was vital in her hip area because it would more accurately deliver a higher dose of radiation while lessening the risk of damaging the surrounding area, specifically her small bowel. He also asked for her to get the SBRT, or stereotactic body radiation therapy, for her lung.
"I do believe she would be the best candidate for aggressive local therapy," Zhen wrote. "She has all the known favorable prognostic factors within the context of stage IV disease. ... I strongly ask you to reconsider."
Blue Cross said no.
Blue Cross provided this statement from Dr. Joann Schaefer, senior vice president and chief medical officer:
"Be assured that our members' welfare is our top priority. We follow nationally accepted evidence-based guidelines to develop our medical policy. That policy is reviewed by outside, specialty-matched medical experts so that the benefits available to our members are for care that is based on scientific criteria and evidence-based medicine."
Interestingly, Kerry probably would have coverage for traditional surgery to remove her lung tumor. The procedure doesn't require prior authorization, Blue Cross says, and costs would be paid in accordance with Kerry's benefits.
Kerry will have the surgery if she has to. She wants to live, after all.
But she wants the special radiation, and Zhen and her oncologist, Dr. Alissa Marr, support that.
She views radiation as far less invasive than surgery, which would be painful and require a much longer recovery time. She has been told to expect three nights in the hospital and four to eight weeks away from her job at the University of Nebraska at Omaha, where she is an associate professor of social work.
And she's concerned about the pain. She is very sensitive to pain medication and said her treatment team worried about how she'd handle surgery.
Kerry was willing to pay out of pocket for the radiation if she could, and friends offered to help. When she asked how much the treatments would cost, she was told: Too much. The out-of-pocket expense would be much higher for her than insurers, because they negotiate prices.
Other radiation oncologists said insurers are too quick to say no to potentially valuable treatments like IMRT and SBRT.
Dr. Hadi Zahra, a radiation oncologist at CHI Health, said in his experience, insurers typically allow the treatments for certain cancers, such as most head and neck cancers and prostate cancer, where there has been more clinical study. But in other cases, insurers tend to reject coverage on grounds that it hasn't been studied enough.
Yet Zahra said insurers need to look carefully at each individual's case. He gave an example of his own patient, a woman whose case is similar to Kerry's. Zahra's patient has stage 4 lung cancer with a tumor in her lung and one in her hip, and Zahra recommended SBRT for the tumor in her lung. The woman's insurance company, Aetna, balked at first. But Zahra appealed, Aetna now is paying for it, and the woman is getting the care she wants.
That's what Kerry wants, too. Doctors found the tumor in her hip in mid-December after she had been treated for lower back pain. She got the crushing lung cancer diagnosis right before Christmas. Officially, she was diagnosed as having stage 4 adenocarcinoma, or non-small-cell lung cancer.
The survival rate data is grim — only 1 percent of those diagnosed reach the five-year benchmark, according to the American Cancer Society. Kerry's first oncologist told her she could expect to live anywhere from a few months to four years.
Kerry then got a second opinion at the Nebraska Medical Center. Dr. Marr told Kerry that she had enough going for her to warrant a more aggressive, treatment-oriented route. Not a palliative one.
So Kerry began with radiation treatments to her hip. Radiation wore her out enough to make her cut back at work. The treatments left a pink, sunburn-looking patch on her skin.
Overall, though, her pain has greatly reduced. Last week, for the first time in months, she drove herself to her hip treatment, her final one.
She walked into the radiation room, took off her ankle boots, unbuttoned her tweed slacks and shimmied up to the elevated bed, where she lowered her pants a few inches. She then lay there for five minutes as piped-in pop music played and the giant machine moved and whirred, shooting radiation into a very defined part of her hip.
As she was leaving the radiation unit, she got to ring a giant brass bell at the end of the hospital hallway. It's supposed to be a happy rite of passage — a symbol of completion.
Kerry dutifully pulled the cord and rang that bell.
But she's not ready to be done.