It was a little scary but strangely refreshing yesterday to find myself at a different medical center in a different part of the city. In a year and a half I haven’t yet sought any second opinions. Now, with the possibility of a transplant fresh in my mind, and because it’s the end of the quarter and everything must happen in my life all at the same time, yesterday was the first one.
I didn’t expect much from it. After seeing all of the evaluation doctors who didn’t know me from their next patient, I was expecting the doctor to breeze in, ask me 100 questions that were all clearly in my medical records, maybe answer a few easy questions, then leave. It’s a second opinion, after all. They may never see me again. They make $300 no matter what they say.
It wasn’t like this at all. The doctor did care. The office was organized. I didn’t feel like the doctor didn’t know me from his next patient because I didn’t see any other patients. In fact, it was almost like the doctor was auditioning for my potential business. I was surprised when he said that he would push to get my case on the agenda at the weekly meeting. Why am I special? I was surprised when he offered to write his cell phone number on the back of his business card. I don’t have any of my doctors’ cell numbers. I was surprised that he didn’t ask me any stupid questions but jumped right in and attempted to answer my big question. Transplant or no transplant?
Like everyone else i’ve seen about this, he didn’t tell me what I should or shouldn’t do. But he, like everyone else, gave me a lot to ponder, a lot to write down, and a lot more questions to ask at my second second opinion–rather, third opinion–appointment tomorrow.
I never really saw myself as a particularly proactive patient before. I have always listened to my doctors and done everything they said to do. So when people say i’m brave, or that cancer’s hard, or any of these other things that people say, I say, “I just do what my doctors tell me to do.” But i’m finding that while my doctors know chemo, blood counts, anti-nausea medication, and surgery, future-telling is not their area of expertise. Telling me what to do when there is no data to support what I should or shouldn’t do is not their area of expertise. Curing something for which there is no cure is not something they can say they can do.
It’s all starting to feel very unsatisfying.
So I find myself at a junction. I don’t have the option of being a passive patient–a patient, patient–anymore. Instead, I am seeking out–and getting–a ton of information thrown at me. Other doctors I should see. Types of chemo I should look into. A lot of procedures that go by acronyms or have the suffix “ation.” I am doing all of the things I’ve always shied away from doing: Google searches, journal articles, talking to other patients, second opinions. I don’t know quite where i’m headed. But my prescription order reads, “I will tell you everything I know–but make your own damn decision.”