Playing the Waiting Game
I’m having a weepy Wednesday and it’s only Monday.
Let me explain.
I was never much of a crier. I think a lot of that came from being a round the clock caregiver for my (now late) mom, who was elderly and had a multitude of health problems.
That’s where I learned how to act nonchalant and casual about issues. It was a way to keep her calm as I matter-of-factly re-assured her things would be okay and we’d find solutions.
With my CML diagnosis came waterworks
With my chronic myelogenous leukemia (CML) diagnosis five years ago, that stoic façade went out the window.
It was replaced by waterworks -- spontaneous, out-of-the-blue ugly crying. It can hit at any time but usually requires a build-up over several weeks until there’s a breaking point.
The smallest thing can set it off—like losing my keys.
However, this morning, it was in the car…without provocation. I suddenly started sputtering crying, tears falling down my face, lip quivering, the whole enchilada.
`Why? Why am I having a crying fit today?’ I asked myself on that drive home.
Blame it on the alphabet
BCR-ABL, to be exact.
BCR-ABL are the nasty little gene critters you want Sprycel to send into hiding. The way it was explained to me, CML happens when pieces of chromosomes 9 and 22 switch places, forming a mutation.
In simple terms, the BCR-ABL test can be used to diagnose CML and tells you how much leukemia you’ve got in your system after treatment.
Doctor’s visits hinge on taking this infamous test.
Waiting for my BCR-ABL test results
Today, I realized I still had another week to wait until the results came back.
Here’s how it goes.
The results used to appear online and I’d cry if they were good and cry if they were not so good. I told you I’m a bona fide weeping willow. It’s not pretty, folks.
Now, the results don’t appear online.
Instead, I have to email my oncologist/hematologist when I start feeling antsy after 10 days and he emails me back with what’s going on.
Sometimes, he calls.
The anxiety that comes with waiting
During my visit last week, he mentioned that the time between when your blood is drawn and you receive the results is the period when “patients become anxiety-ridden. Try not to be anxiety-ridden.”
“Anxiety? What’s that?” I joked with a little laugh.
The problem is…things have been going in the wrong direction the last two times.
After being “undetectable,” for close to two years with maybe a few blips, suddenly the tests are going the other way. Not only am I detectable again, but the numbers are climbing.
The doctor said he would entertain the thought of switching me yet again to a different TKI. But that would happen only if the detection was at a certain rate. “Try not to worry.”
Yeah, right.
Possibly switching medications
I don’t want to switch medications again. I changed from Gleevec to Sprycel four years ago and I’m good. I know what the side effects are and I’m used to my love/hate relationship with the drug.
But I’ll change if I have to. But I'll be kicking and screaming most likely.
So, once I thought about all that has been going on lately coupled with everyday dramas like my apartment losing power, having a fire alarm screaming for too long, and going without hot water, I decided to give myself a break.
At a stoplight, I fumbled around for tissues, wiped my eyes and face and took a deep breath.
It’s okay to cry
Sometimes, it is a relief to let it out.
CML has made me a more emotional person. The highs are higher and the lows get lower. The key is to give yourself a break when you are having a bad day.
Drive on.
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