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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Ann Harper moderator
    3 weeks ago

    @susanmae having cancer is rough and you don’t have your mom to help. I know how that feels. It’s ok to cry. We all do, but then you pick yourself back up and get on with life because, after all, that is the point.

  • Deb Wesloh moderator
    4 weeks ago

    Thanks for sharing your story. Waiting on test results is definitely one of the hardest parts of having a chronic blood cancer, or any cancer for that matter. There’s nothing wrong with crying. God knows I’ve done enough of it. Best of luck to you!

  • Jim Smith moderator
    4 weeks ago

    @susanmae You are so right. It’s important to take a break from being brave and just let it all out. And it’s important to not feel guilty if you have a bad day. Good Post.

    What’s with them no longer putting your test results on-line? It’s 2020 for crying out loud.

    Anyway, take care and keep the Kleenex handy!

  • Susan Gonsalves moderator author
    4 weeks ago

    I think they want the physician to see it first in case it is some awful news or can be misinterpreted. My doc pretty much knows to expect an email and he’s prompt about calling or emailing back.

  • Barbara
    4 weeks ago

    I’m so sorry. And I can understand. I’m at about 5 years too, and have had to change meds because of side effects. I’m not weepy, but definately anxious, have different set of side effects, sleepless, puffy. I’m still non-detectible, but never get past the fear that something else will pop will pop up and derail me. And I don’t really share this with anyone because everybody thinks I’m doing great (I am) and it feels like whining. So for now, keeping positive attitude as much as possible. It feels good to share this. My thoughts and hopes that you will be ok, and keep crying…that’s a good outlet!

  • Susan Gonsalves moderator author
    4 weeks ago

    Thank you Barbara. I do my best not to let all the negative stuff derail me. Any time you want to share, know that you can…I held things in for several years until recently I decided to “let it out,” and it is a huge relief to find this community and realize I’m not alone. Hope you keep doing great.

  • Ronni Gordon moderator
    4 weeks ago

    I hear that crying is supposed to be a good release and therefore good for our health, so that’s another way to look at it. Still, for some reason it’s embarrassing. A friend snapped at me when I thought she said to have some of her salad, and I reached her fork, and she said, “Eat your sandwich, you ordered it!” AND I started to cry. Obviously, not about the salad/sandwich misunderstanding. Hey, how come it takes so long to get results? I see my results within an hour or so when I get a checkup.

  • Susan Gonsalves moderator author
    4 weeks ago

    My regular bloodwork results are available within the hour but the BCR/ABL one takes the 10-14 days–possibly sent to another lab? Crying can be embarrassing but at this point I just give myself a break and worry less about what other people think. Life’s too short for that. Thanks for reading.

  • Susan Gonsalves moderator author
    4 weeks ago

    Thank you. I’ll know more in a few weeks but it has been trending in the wrong direction for a while now. Hoping for a turnaround.

  • Ramae Hamrin moderator
    4 weeks ago

    I loved this, Susan. It was so very relatable. I used to pride myself at being stoic, at not crying. The first change was when I had my kids. The second was when I was diagnosed with MM. Now I understand those kind of crocodile tears in the car. I’ve experienced them myself, many times. Waiting for test results is so hard. It definitely is okay to cry and give ourselves a break, regularly and often. I am hoping for the best possible news for your results!

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