two doctors huddled around a computer talking and ignoring their patient

Dear Doctor: Don't Talk About Me as Though I'm Not in the Room

Don’t you love it when health care professionals talk about you as though you’re not there?

No? If you don’t like it, you are not alone.

It certainly made me feel uncomfortable when it happened to me at a recent dermatology appointment.

Two cancer worlds colliding

The people in the room were my dermatologist, a nurse practitioner, a fellow or resident (I can’t remember which), and one other person.

Even though I was at the dermatologist and not hematologist, you’ll see how it ties into my blood cancer history. I have one foot in each world. Blood cancer because of my acute myeloid leukemia diagnosis in 2003. Skin cancer because of the chronic squamous cell cancers that I get as a result in part from my stem cell transplants. (The other factors are a history of sun exposure and the immune-lowering properties of the prednisone that I take.)

Sometimes the two worlds intersect. This happened at the recent dermatology visit where a comment from one doctor to another made me feel invisible.

Talk to me, not about me

Here’s how it happened. Several doctors have discussed my taking a pill to cut down on skin cancers. I already take nicotinamide (also called niacinamide), which is a form of vitamin B3, so that wasn’t it. I don’t remember the name of the pill, but I do know that they said it is strong. I would have to have my blood levels checked repeatedly to make sure it wasn’t messing with my liver or any of my other levels.

One of the doctors went to the computer and pulled up my blood counts from my last visit.

“Her hemoglobin is low. It’s 11,” she said.

“That’s OK," my doctor said.

“Wait, wait," I thought. "I have a LOW BLOOD COUNT?”

When blood counts trigger bad memories

My post-traumatic stress disorder (PTSD) had made my brain latch onto the words “low blood count” without absorbing the rest of the exchange, which is that the number was OK. Low blood counts led to my diagnosis. Throughout treatment, the first thing I wanted to know, after a blood test, was what my counts were. As an 11-year-survivor of my fourth stem cell transplant, I’m still sensitive about my counts.

To add insult to injury, they were having this discussion as though I wasn’t there, as though they didn’t know that the words “low blood count” would trigger me. I guess I could give them the benefit of the doubt. They probably didn’t know. It was a dermatology visit, after all.

My blood cancer team would be more sensitive. They wouldn’t throw out the words “low blood count” and then move on.

Keeping a positive mindset

To back up, it turns out that I am not going to take the pill. Although it seems to me like I have a lot of skin cancers, the number is not enough to warrant the pill. I’m glad about that. I already take too many pills, in my opinion.

I usually think in terms of hematocrit. Some call it “the crit.” To get from hemoglobin to hematocrit, you multiply by three. So my “crit” was 33. Normal for women is between 35.5 to 44.9.1 That’s close enough for me. I’m not worried about it. I’m more concerned about the doctor talking about me as though I wasn’t in the room.

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