On May 8, 2002, I found myself in the Patient Services Computer Room of the MD Anderson Cancer Center (MDA) in Houston. Chuck, my beloved husband of 30 years, was ensconced several floors below in the Infusion Center, receiving his third and final course of chemotherapy for a rare, very advanced chest tumor. During the first course, he was too sick for even family to visit. For the second one, his 90-year-old dad, Ben, flew in from Detroit. this time, our daughter Sara had taken off time from Public Defenders in D.C. and was keeping Chuck entertained chatting about her fiancé, fellow law student Joaquin Sanchez.
Chuck and I had been commuting between San Diego and Houston for five months now. This first phase of his treatment—three rounds of high-potency chemotherapy—had gone very well, and had shrunk the tumor considerably. After a rest back in San Diego following this last round of chemo, we'd return in June. At that time, MDA chest surgeons would try to remove every single bit of tumor remaining. Then would come radiation therapy, and finally more chemotherapy to, the oncologists called it, "mop up."
Linda, the MDA Associate Director of Patient Business Services, had waited until our second visit, in March, to broach a delicate subject. I think she had waited until it was clear the chemo was working.
Chuck's care over its entire course, Linda told me, was likely to cost well over $100,000. "Well over," she repeated, patting my hand. She was patting my hand because, as she pointed out, our insurance was not required, by contract, to cover any of it, not one penny. That's because Chuck and I had broken all the Managed Care rules in getting him to MD Anderson.
Here is why we did so. It is a two-part story.
Part I: On Friday, January 31, 2000, Chuck was diagnosed with fluid around the heart by doctors at our local clinic. He was treated, improved rapidly, and was discharged the next day. Over the ensuing months, he appeared to recover entirely.
Part II: On Sunday, November 4, 2001 (22 months later), his pain and trouble breathing recurred. This time, doctors at the same clinic discovered that he'd had a tumor in his right chest all along, obvious on the chest X ray from January 2000; and that in the interim the tumor had invaded most of Chuck's right lung. After multiple tests, our local doctors told us that they could not identify the source—the kind of tissue composing this particular tumor. Since they couldn't diagnose it, they couldn't treat it. It was, they said, undiagnosable, untreatable, and rapidly fatal. They told us not to make a follow-up appointment until Chuck's symptoms became severe. And by the way, they thought that Vanderbilt Cancer Center in Nashville was doing cutting-edge research on this topic.
We asked our dear friends to help us and in December 2001 we fled, as if pursued by a monster, to Nashville, where Chuck was diagnosed with a rare, advanced, but treatable "malignant thymoma."
Within a week of the diagnosis, other friends helped us get an immediate appointment at MD Anderson where, on January 4, 2002, we learned of their protocol for curing—yes, curing, without recurrence!—advanced thymoma. A week later, Chuck began the long, tough road of chemotherapy, surgery, radiation, and more chemotherapy—a minimum, we were told, of a year's intensive treatment.
Our insurance contract mandated that any out of network care had to be initiated by our San Diego doctors, and pre-authorized by the network itself. Our out-of-state visits were so far out of network, and so unauthorized, we might as well have gone to the moon on our own and expected them to pick up the tab.
Linda assured us...
