The CML Queen of Asking Questions

Chronic cancer patients have to live each day just a little on edge and “waiting for the other shoe to drop,” as my parents used to say.

Living with chronic myeloid leukemia (CML) has made me super conscious about self-care and needing to know things. I’ve had 5 ½ years to read articles, watch videos, and most importantly, ask questions.

I remember early on in the initial months, looking at my online record and seeing that not only was I positive for BCR-ABL, but also something called e1a2.

At my next appointment, my first question when my hematologist/oncologist walked in the door was, “What’s e1a2?” To this day, I remember the expression on his face when he replied, “No one has ever asked me that question before.”

“Well,” I said, “If I have it, I want to know what it is.”

Learning to ask questions

Since that time, I’ve always tested negative and don’t think much about it. But the doctor did sit there and draw things on a piece of paper and explained the shapes and sizes of cells, “transcription subtypes,” etc.

The details, along with other explanations, have flitted out of my foggy Sprycel brain as years went on.

So, I have this rule now and he knows it, as does my primary care doctor. If someone is going to jab a needle in my arm or stick anything anywhere in my body, I want to know first, what it's for, and second, what will the results be? Otherwise, no-go, I won’t be jabbed.

Maybe it’s the flashback to before my diagnosis when my then primary care doctor fluffed off nine months’ worth of crazy bloodwork (that I never saw) and said it was all fine when I asked.

My right to know about my medical care

Now, everyone, I know and you know we have the right to know the truth. And yeah, “I can handle the truth!” (Visions of Jack Nicholson yelling that I can’t!)

So, regarding bloodwork, here’s what typically happens at my once every three-month visit (usually) to the CML specialist:

He fiddles at the computer. I’ve gone for bloodwork about an hour earlier that day. Results come on the screen.

“Is that from today?”

“Yes, of course it is from today.”

Once upon a time, in my previous life with a different doctor and medical system, I was always told it took two weeks at least to get results. And, I’d only get a call if something was out of whack. (My words, not theirs. I’m sure it was worded more pristinely).

And we all know how that played out.

But back to present. If I see something is red, my next question is, “what’s that?”

You know all those funky letters and abbreviations that pop up?

Let’s use “MPV” as an example.

“What is MPV?”

“Mean Platelet Volume. It’s to do with the average size of the platelets.”

“Why is it in red?”

“It’s a little low.”

“What does that mean when it is low?”

“It means that the platelets tend to be older.”

“Why are they older?”

“It could be the bone marrow is not producing enough new ones.”

“Why not? What do I have to do or you have to do?”

You get the picture.

Mostly we see what happens the next time if it is not something significant. It usually works itself out. We also look for blips and trends.

“Should I be worried?” is another one of my questions.

“Do I have to make any changes to treatment?” is another.

You are the expert on you

It may sound a little obnoxious but asking questions earlier on has made it easier to communicate now and keep track of areas that may need re-visiting or further testing.

Have I mentioned I’ve worked as a journalist my whole life? The question thing is part of the job.

At my last visit three months ago, my doctor told me that he is convinced that CML patients know more about their condition than anyone else could, because they live with it.

He said that he’s told medical students to “be humble,” because it is not likely they will come across CML very often in their work. And, for that reason, patients know best.

But you can’t know unless you ask. So ask.