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Marking Milestones and Memories Post Diagnosis

Last updated: October 2022

October is an important month for me and it has taken on more significance over the past eight years.

My life changing diagnosis

Toward the middle of the month back in 2014, I received the news that would change my life forever. I was diagnosed with chronic myeloid leukemia (CML). Although I instinctively knew something had been “off” for a while, health-wise, doctor chalked it up to stress and aging and so I eventually stopped talking about my concerns.

Following the diagnosis, I remember vividly thinking it would be my last Christmas that year and I should make it memorable.  I took special care in decorating my tree, making my rather new apartment look especially festive. I spent time staring at all the lights and telling myself to soak it all in—believing silently I wouldn’t get the chance to do it again.

Well, that year passed and another began.

The countdown in my mind

My birthday is also in October and so began the countdown in my mind again. Would I have my last summer? Was this going to be the last time I did x, y, and z? Could I hold off the difficulties and actually make it to my next birthday?

Keeping my diagnosis to myself

It really is no way to live thinking that way but in my early naïveté, I kept my illness and what I was going through largely to myself, faking it until I could make it, publicly at least. So, I had a lot of time to dwell and ruminate on these thoughts.

I downplayed everything even though the first year was extremely rough. I was not getting the hematological responses or milestones I needed and the situation was slow to change. New to treatment with TKIs (tyrosine kinase inhibitors), other people didn’t seem to understand that when I felt sick or tired, I was actually more than the normal sick or tired. I shut down talking about CML even more.

People weren't supportive

During this time, some of the people who later ran for the hills rather than stick around and be supportive, were largely still in my circle, if not my corner.

I failed to tell them what the reality was (and still is) because I wanted them to stay around. Oh, I wish I could go back and tell that Susan what I know now!

As things continued to spiral, the decision was made to switch TKIs to see if a different drug would be more tolerable because at this point, I could barely walk and was sick all the time.

Is This It?

That next birthday and Christmas, I did it again. I remember spending the holiday laying on the couch staring at another immaculately decorated and lit Christmas tree. I was nauseous and feverish and told myself again: `This is it.’

But it wasn’t.

Gradually, I adapted to the second TKI which brought around better hematological outcomes but was more powerful and took a terrible toll on my skin, muscles, stomach and whatever else cropped up on a given day or time.

The difference was—I had to weigh the pros and cons of feeling lousy with the fact that the amount of leukemia in my blood was decreasing and even, at times, hiding enough to be deemed “undetectable.”

More changed as the years went by. Of course, I would still have lingering thoughts about one milestone or another possibly being “it,” but did not worry or obsess about it nearly as much. Not even close. I hate the term “new normal,” because: 1. It is not new at this point. 2. There is nothing normal about it.

But time marched on—and these last few weird years with the pandemic altered my outlook again. Having blood cancer and being immune compromised is a feeling only others in the same boat can fully understand. It pushes mortality and feelings of vulnerability to the forefront. Plus, I became even more exhausted trying to explain what it is like to people who could not or would not listen.

Another twist on the journey

As I approach my birthday and my eight year “cancerversary,” I’m in the midst of yet another shift in my blood cancer journey. The last few months, in some ways, I've reverted back to those early days. My leukemia levels are on the rise and my fatigue and mobility issues are the worst they’ve ever been.

There could be a treatment change on the horizon. Or, maybe things will turn around and improve. Who knows?

I feel like a balloon-like figure you see blowing around in the wind in front of a car wash -- going this way and that and up and down at the mercy of the elements.

This time, 2022 versus 2014, I don't feel so alone. I don't have to keep my thoughts and fears to myself anymore. It is a safe place here.

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