Talking to my doctor: I'm much, much more than a bladder with cancer

Talking to my doctor: I'm much, much more than a bladder with cancer

I struggle with talking to my doctor. My urologist has seen me at some of the worst moments of my life. If first impressions are the most lasting, then his enduring image is of a woman in a hospital bed, wearing a hospital gown, attached to an IV and a catheter, scared witless and pretty much begging to leave. I wish I had the chance to change that image and create an enduring one of a different version of me.

Most of the times that I’ve had conversations with him I have not been wearing my regular clothes. In fact, I haven’t had anything on from the waist down except a thin paper cover. It’s hard to be yourself when your feet are in stirrups. It’s hard to think and be articulate. In contrast I’ve seen him in surgical scrubs, a suit and tie, and a white “doctor’s” coat. He’s been in control, articulate, at ease, at his best. Somehow I feel that if he knew me better, then being a patient would be easier.

So, what would I tell him? What do I want him to know about me?

I’m usually pretty well dressed. Admittedly my 14-year-old daughter usually has to help me put outfits together, but I do look professional most of the time.

I make people laugh. Sometimes they laugh because I do dorky things, and sometimes they laugh because of my sarcastic and slightly profane sense of humor, but people are often laughing when I’m around.

I’m good at my job. People generally care about what I have to say at work. Some even seek me out to ask my opinion. I work hard. I’m efficient. I’m adaptable.

I’m brave. At my last job I faced down the president of our university system, who was a three-star Army General and often told us about how he’d “negotiated with the Sandinistas.” I did not flinch when he put the head atop his six-foot-three-inch frame an inch from my face and lectured me. As president of our faculty senate I persisted and put the head atop my five-foot-three-inch frame into his face and negotiated successfully for my institution.

I’m afraid of doctors. My mother died because of a doctor’s error during a relatively minor surgery. After severing her bile duct during a laparoscopic gall bladder surgery, the doc sewed her back up and refused for more than a week to acknowledge that my mother was gravely ill.

I’m strong even though I’m emotional. When I cry and when I look scared, don’t let that get in the way of honesty and directness. I want to know everything about my diagnosis and prognosis. Everything. I want the research, the doctor’s notes, the manuals of standard care, the test results.

I’m much, much more than a bladder with cancer.

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