Addicted to good news

It is hard to retain perspective. I am so used to things going spectacularly well that even moderately good news is a let-down.

Monday morning I showed up for my pre-chemo blood draw and appointment with my oncologist. Since the blood work takes a few hours to get analyzed, we discussed what the plan would be depending on the results. He told me that since my tumor markers had been so low the previous week, there was a possibility that they would have fallen into the normal range by today, allowing us to skip the cisplatin (the drug that causes the most short- and long-term side effects). When we came back from lunch, the nurse told me my results: the tumor markers had continued to fall! It took a few minutes for me to explain why I wasn’t happy with this apparently great result. While they have fallen, the markers are not yet low enough to consider lightening the chemo load, which means not only another cycle of feeling awful, but yet more permanent hearing loss.

I am learning a lot about medicine these days. I have often felt, as I am sure everyone has, that my doctors were trying to leave the room as quickly as possible. I have always just assumed that they were busy, and that since I was basically healthy, that it kind of made sense that they wouldn’t spend a lot of time with me, because they had more pressing matters to attend to. When I became a cancer patient, I immediately assumed that all of a sudden I was one of those patients who was taking up their time, and that I deserved every moment of it, and more. I realized today that despite the gravity of my situation, my case is still on the lower end of the danger scale. There is a huge amount that could go wrong, and does for a lot of people. Infection, secondary cancer (caused by the treatment), both at once… It is these incredibly difficult and complicated cases that motivate, and yes, interest, my doctors. Once my diagnosis was made and a treatment plan decided upon, there was not a lot left for the doctors to do, besides be on the watch for serious side effects, and plan contingencies if things go wrong.
The medical school system is set up to cultivate this interest in extreme pathology. We spend what has seemed to be a disproportionate amount of time learning about rare but terrifying diseases, as opposed to more common but relatively benign conditions. I think that this emphasis on the dangerous and uncommon is responsible for much of the dismissive attitude that many patients feel from their doctors. During my studies, I often have found myself wondering things like “how is it that I know about temporal arteritis, but I still don’t really know what causes a headache?” These days, though, I understand a bit better why the emphasis has been placed where it is. While they are common, most headaches just hurt; temporal arteritis can make you go blind. Somehow the vastness of the gap that separates discomfort from debilitation was less distinct when I was healthy.

On the other hand, I also understand better the value of the time we spend learning how to listen to and communicate with our patients. There are plenty of supposedly qualified people around here who are absolutely incapable of answering questions directly and clearly, which causes me to lose confidence in the competence of my medical team. This stress is profoundly disturbing.

I am also learning much about the boundaries of medical knowledge, and the difference between clinical work and what we are taught. My absolute neutrophil counts (the most important number for assessing my immune status) have been all over the place, and nobody has been able to give me a clear explanation of why. It turns out that nobody really cares! The bottom line is that since my cancer is potentially curable, they are willing to push my immune system to the point of danger, because the likelihood that a secondary infection would kill me is less than the danger posed by not finishing off the last bits of tumor that may be hiding out. So while it is frustrating and not confidence-inspiring that nobody can tell me why the cell counts are what they are, I am realizing that the point-A-to-point-B logic that we are taught in medical school is really just the first step, and that in the clinic, understanding the system is only useful if it helps the patient. It is being able to know when you need more information to make a good decision that is important, not being able to reconcile the results in front of you with what it says in the textbook on your shelf.