A hand releases a butterfly

Let It Go: Words for a Leukemia Patient to Embrace

I marked my sixth year 'cancerversary’ last week and believe me, there was no party. Made it through the day so that was enough. A lot has happened since that fateful day when my diagnosis of chronic myeloid leukemia (CML) was confirmed.

Laying it all on the table - literally

That day in October 2014, I sat for three hours in the new hematologist/oncologist’s office with my friend as he laid it all on the table, literally.

On pieces of paper, he drew things like chromosomes 9 and 22 mutating to form the Philadelphia Chromosome. He wrote and explained the names of the Tyrosine-kinase inhibitor drugs, noting which were first generation, second generation, and so on. He talked about how these drugs work to target the leukemia cells. At the end of his list was the “last resort,” option, a stem cell transplant. “If it comes to that, I do those,” he announced.

The doctor also spoke of clinical trials, recent research with mice, and then, what the upcoming several times a week blood work would like in the days ahead. And, the need for the dreaded bone marrow biopsy. (A story for another day!)

I had my weekly planner book in my lap and flipped through it and declared, “Do you see all this? I’ve got all these things to do. I can’t be running back and forth here every minute.” Oh, to be so young and naïve.

At some point in the three hours, I began to rant about how my previous primary care doctor (in another part of the state) had ignored my worries that something was wrong for a year and a half. I talked about how I was told it was menopause, stress, working too hard, in my mind, etc., and blown off. I added the bit about how she ignored at least nine months’ worth of 'out of whack' blood results.

"Let it go"

More than anything else he said that day, I remember this part clearly. The CML specialist asked my friend to leave the room. He closed the door and walked over to me and said, “Let it go.” Then, he turned around, opened the door and let my friend back into the room.

Let it go. I’m not sure if this was pre- “Frozen,” or during that movie’s heyday but those words stayed in my mind for a long time. I go back to them even now.

At first, I felt a little annoyed that this stranger would dare offer me this suggestion or advice. A lot of what he said that day is a blur. It was three hours after all. From time to time, my friend will remind me that I was warned about this or that side effect or whatever—things I don’t remember. But I remember “let it go,” and I think I have. I look at it this way: If the doctor had looked at the blood work and paid attention to it, I would have been diagnosed about a year earlier.

Having an extra year

I had that extra year to not be a leukemia patient. That’s one plus. Granted, I didn’t feel good but I had a lot of other personal and physical ailments going on at the time. I spent that year not having any knowledge of CML or the realities of living with a terminal illness. And there’s no tumor where time would be of the essence to remove it.

That’s one way of looking at the situation, I suppose. Blood cancer patients have to let go of a lot of things. Most importantly, I think, is that they have to let go of their lives the way they were before. It’s difficult but do-able.

A couple of months ago, my doctor laughingly asked me if I remember telling him I was too busy to be “running back and forth” for treatment and tests at the cancer center. I told him I did remember and also about his “let it go” comment.

“Did I say that?” he asked. “And have you?”

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