February 01, 2010
American medicine is the best in the world—as any American doctor will tell you. They should know, or at least believe. And there is some truth to the claim, particularly if you’re afflicted by some malady—breast cancer, coronary heart disease—whose rate of mortality has declined steadily in the last decade.
But what happens when you have a chronic condition, as I do, for which no good treatment has materialized despite decades of research? Physicians seem to have a lot of ammunition, but more often than not they don’t seem to be hitting the broad side of the barn with whatever they’re firing. My progressive MS long has had the best and brightest shooting blanks. My doctors are good people quickly running out of options.
The interferons did nothing to stop the progress of the illness. IV steroids offer mere moments of slightly enhanced muscle strength that has no lasting power. The steroids threaten bone density, which is especially problematic for some of my friends with MS, who are either cutting back or cutting it out altogether.
I recently embarked on a six-month regimen of chemotherapy, which has weakened me, turned my hair grey or white (depending on who you ask), and transformed me into a fragile fellow who might take a tumble in a strong wind. The process was done at the cancer center in a New York City hospital. The fellowship there was moving. The bald patients in baseball caps provided a stark reminder of how sick others are, and that things always can be worse. Not a bad lesson.
Now I give myself daily injections of a drug intended for another form of MS. A waste of time, I think sometimes. Next up could be IVIG (intravenous immune globulin), a plasma product containing antibodies from thousands of donors. In theory the plasma combo fights invading armies of pathogens. But anyway, this exotic treatment has been denied by my insurance provider.
Doctors cannot be faulted for throwing everything they have at a disease. Sometimes it helps, they say. Usually it does not, I reply. But it sure beats doing nothing, if only for psychological reasons. Frustration knows no end, though I am hardly the only one in this position.
Incurable chronic illnesses can often be managed, sometimes survived, but are never seen in the rearview mirror. Patients’ expectations can be out of whack and highly unrealistic with these conditions. Happy endings are elusive, but we must continue chasing them. Too often, though, we expect better communication from our doctors than we get, especially when it seems that nothing’s working.
“When we do not get answers, and doctors are aloof with us, it’s like we have no say in our treatment,” says my pal Buzz Bay, who has non-Hodgkin’s lymphoma. Buzz’s Indiana doctors are out of ideas; worse yet, they don’t seem to communicate—with him or with each other. “We are fighting against the uncertainty,” Buzz says emphatically. Buzz never used to doubt or even question his doctors. He endured three long rounds of chemotherapy and one of radiation. And then, after a period of quiet, the cancer bared its teeth again.
What Buzz wants—to “look at options and see what’s out there, be it alternative medicine or a second or third opinion”—isn’t so difficult to understand. He’s fighting for his life, and his frustration now borders on anger. “It’s like they’re saying, ‘I’ve done everything I can for you. Bye,’ ” he says.
Long ago I learned never to stop pushing either the limits of medicine or those who dispense it and walk away. We have to be our own advocates. Who better to do that than the person in the hospital bed? I would rather be treated in the U.S. than anywhere else in the world, but I would like to be treated a little bit better.