Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [60]
The experience of this illness had a profound effect on him. “Here I saw doctors repeatedly failing to come up with my diagnosis. It turned out that it needed just a simple blood test. I passed by a lot of prominent specialists who didn’t see that.” While Paul had a good relationship with his primary care physician, he had scant trust or confidence in the medical establishment at large. “As a believer in rationality, in decision science, I would say I am a skeptic. A good Socratic skeptic.”
Paul tapped the keyboard again, printing out the spreadsheet and graph, and arranged an appointment with the rheumatologist who was overseeing his treatment.
“I don’t make much of it,” the rheumatologist said, looking at the graph showing the recent rise in white blood count.
“But it’s two standard deviations above my usual mean,” Paul replied. “I realize it’s in the normal range, but that doesn’t seem to be normal for me.”
The physician examined him, but found nothing worrisome and then sent a repeat set of blood tests. The next morning, Paul heard that his white blood count was again normal, even slightly higher than the previous count. “I’m not concerned,” the rheumatologist said. “This is probably just a viral infection that bumped your white count up a bit.”
“I was clearly more worried about this than my doctor,” Paul told us. “I really pushed at that point to see a specialist, a hematologist. I mean, after having been sick so long with polymyositis, I didn’t want unknown things happening.”
The hematologist examined Paul and found nothing abnormal. Then he drew a blood sample and smeared a drop onto a glass slide. He studied it himself under the microscope and gave Paul a rational explanation for the changes in his blood counts.
“He told me I had chronic lymphocytic leukemia,” Paul said. “That I likely developed it because of my immune condition, and that taking those cytotoxic drugs, even in low doses, caused mutations in my blood cells. So after all those years of treatment, sometimes you come to understand the consequences of previous decisions.”
“Chronic lymphocytic leukemia is often a very indolent condition, not like other leukemias,” the hematologist explained to Paul. “It can be stable for many, many years without harming you. At this level of white count, and without any sign that it’s causing problems, I recommend that we watch you without any treatment.”
Paul listened but did not feel particularly reassured. “I’m a Buddhist. I am interested in Eastern ways of thinking, and I’m drawn to Eastern medicine. But here I decided that if this problem was going to be solved, it would be solved by Western medicine. Perhaps I’d modify that approach, complement it with alternative medicine if I needed to, but that would come later.”
As soon as he returned home from the appointment, he went on the Internet. He attacked the problem the same way he did in his work as a strategic planner. He tried to define each dimension of the disease—its cause, manifestations, degree of variability, therapies—and then worked to understand the multiple possible outcomes.
In Mary Frances Luce’s terminology, Paul Peterson represents the extreme of “vigilant decision making.” He was undeterred by the fact that he didn’t have a formal education in medicine. “I was educated through the experience of my polymyositis,” he told us. “Furthermore, I’m a scientist. I understand how research is conducted, what statistics show and don’t show. I was well aware of all the garbage that’s out there on the Internet. So I decided to go with top-tier journals, well-accredited papers, authored by specialists who are at recognized institutions.”
Paul found that one of the richest sources of research information was from the American Society of Hematology, the professional organization of clinicians and laboratory scientists who study blood diseases like chronic lymphocytic leukemia,