Fighting cancer, fighting the system

My sister Debbie was in pretty good spirits, considering that we were headed to the hospital for her third brain surgery in a year.

As we crossed the bridge into San Francisco, she joked and talked about this and that. Her friend Fran was along for the ride, and so was my sister’s son Dan, a Marine just back from Iraq.

I thought about the irony of Dan’s returning from war unscathed while his mother gets hit here at home, stalked by a killer that came at her out of nowhere. It began three years ago when she was diagnosed with ovarian cancer. A year ago, the cancer spread to her brain.

Through it all, Debbie has kept her spirit. She’s been a motivational speaker for new cancer patients; she’s helped organize fundraisers for cancer research; and she’s been the primary caretaker of our ailing parents, including a father who has had three strokes in a year.

This is life, I keep telling myself. Medical maladies, comfortable routines thrown into disarray, mortality creeping ever more into our consciousness. The only certainty is that none of us knows what will come next.

Earlier, as I made arrangements to check on Debbie and other family in the Bay Area, my travel plans had changed rather suddenly. My son, 29, was mugged and seriously injured in Philadelphia. He was rushed to the emergency room, where doctors referred him to another hospital for reconstructive face surgery. That hospital, Temple University, turned him away. My son just completed graduate school, hasn’t found work yet and has no health insurance. Sorry, the hospital said, according to my son. No insurance, no treatment.

Another hospital, at the University of Pennsylvania, was more accommodating. My son was told he could apply for medical assistance and a program for crime victims, but the processing could take forever.

I checked with my doctor in Los Angeles, Paul Toffel, who said that if my son’s bones weren’t reset within two weeks, he could suffer permanent damage. Toffel called a colleague in Philadelphia at the same time I was e-mailing my son’s doctor, saying I would pay for the surgery upfront if necessary while the claims were considered. The surgery was performed, my son is recovering and no bills have arrived. Yet.

It doesn’t have to be this difficult, of course, to get proper care when you’re sick or injured. But we’ve got an insane system, protected by powerful lobbies that put dollars ahead of health.

President Obama seems to have lost the nerve to follow through on his onetime support for a single-payer universal healthcare system. Now that he’s elbow-deep in the muck, with vested interests swarming like leeches, it’s not clear what he wants or how long the American public’s overwhelming desire for change will be ignored.

My sister, who has been wading through the insurance morass to figure out what care is available to our recovering father, had her own issues with Kaiser regarding her cancer. When the disease first metastasized to the brain, and a lemon-sized tumor was removed by conventional surgery, her doctor recommended she follow up with whole-brain radiation at Kaiser.

I spoke to some of the nation’s leading oncologists, who told me they would use gamma knife surgery instead because it didn’t carry the same risk of cognitive loss as whole-brain radiation. But Kaiser didn’t have the equipment to do the more expensive gamma procedure, and it took some doing on my sister’s part to push for a referral to UC San Francisco Medical Center.

That surgery went well, and Tuesday, my sister was back for a second round of gamma, this time to zap a tumor in her frontal lobe. A nurse, Lisa Mannheimer-Miller, fitted Debbie with a brace that was screwed into her skull to help direct the beams of radiation. It was painful to look at, but my sister had a smile on her face, strong as ever.

Mannheimer-Miller told me she’d had a gamma patient two weeks earlier who discovered the day before surgery that Blue Shield had denied coverage.

“Oh, I was furious,” said Mannheimer-Miller, who called Blue Shield to plead for coverage.

Does she do this often with health insurers?

“I do it all the time,” the nurse said.

At least someone’s got a little gumption.

When Blue Shield rejected her argument, Mannheim-Miller called KPIX-TV news in San Francisco. A reporter interviewed the patient, Shelly Andrews Buta, and her two UC San Francisco surgeons -- Penny Sneed and Michael McDermott, who happen to be my sister’s doctors.

Blue Shield officials had told Mannheim-Miller, and later me, that they recommend whole-brain radiation rather than gamma (which happens to be more expensive) for patients with more than three tumors. Buta had 13 small ones. Blue Shield also said, according to KPIX, that gamma does not increase survival rates.

I’m no doctor, but I know enough to say that a standard of three tumors seems arbitrary. And although there isn’t enough research yet on survivability, there is less chance of cognitive loss than with whole-brain radiation. Sneed told me that in Buta’s case, she was already suffering from partial paralysis because of the tumors, and the lower dosage of whole-brain radiation might not have been adequate to destroy the cancer quickly enough.

Buta, a divorced mother of two, is 45 and lives in Chico. In a perfect irony, she is a hospital social worker, helping patients sort through their healthcare options. Her own hospital had recommended gamma in her case, she said.

Clearly, Buta is a very sick woman. In addition to the brain tumors, she has a lesion on her lung and is receiving chemotherapy. It can be argued that we spend far too much money keeping terminally ill people alive. But as Buta put it in our conversation, don’t we owe it to younger patients to give them their best shot at an extended life?

When Blue Shield didn’t budge, two of Buta’s friends came through. One used money from a home equity line of credit and wrote a check for nearly $30,000, and the other put several thousand dollars of the bill on an American Express card. Buta had the surgery, which went well, and is hoping Blue Shield reconsiders and her friends get their money back.

In my sister’s case, Kaiser offered no resistance this time on the UC San Francisco referral. In the radio surgery center, Sneed showed us a computer image of the tumor, a milky white blotch about 1 centimeter in diameter. Then Sneed and McDermott helped my sister onto a contraption that looks like an MRI machine. She lay her head back and closed her eyes, and in roughly 30 minutes the gamma rays destroyed the nucleus of her tumor.

An hour later we were in the car and headed back to Contra Costa County and the house we grew up in. My sister slept for 19 straight hours and woke up smiling and chipper, happy that it was over, and hoping for the best.

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steve.lopez@latimes.com