The Trauma of It All: Living With Chronic Leukemia

Having a chronic illness is like re-living trauma daily.

I heard that sentiment recently and, like a lot of things, it got me thinking.

When you have a chronic illness, in my case, chronic myeloid leukemia (CML), there is not a lot of time to sit around patting yourself on the back for what you endure daily.

Blood cancer is no joke

But think about it — a blood cancer diagnosis carries baggage with it. If it was an airport, we would be responsible to pay extra handling charges.

Not only does leukemia come with many physical problems, but it sure does also mess with your emotions. Feelings of self-pity, sadness, anger, and frustration come and go like waves, at least for me. In addition to the illness itself, treatment can bring about side effects, some of which are severe and life-changing.

I say this all the time: leukemia is no joke and not for the weak-hearted. You have to design your own coping mechanisms and develop a thick skin to get through each day without falling apart.

Because, after all, a chronic illness is like re-living trauma daily.

A deeply distressing experience

What is trauma? Trauma is a strong word…some would say dramatic, but bear with me.

I looked up the definition, and here is what it said: “A deeply distressing or disturbing experience that can have a profound physical or emotional impact on a person. It is caused by a single event or repeated exposure…”

Yeah, spot on.

The diagnosis, being told by the doctor that you have an incurable blood cancer that you must live with for the rest of your life, kicks things off (“a single event”). Once the initial shock starts to wear off, the realization that this medical condition is indeed something you are stuck with forever comes next. It is difficult to accept, to say the least, but you have no other choice.

So even those of us who go about our days, working and living life, still have trauma existing on our backs. We may not always be aware of it, but it is there.

Challenges I've gone through

Over the past 10 years since my diagnosis, several medical breakthroughs have taken place in the world of chronic myeloid leukemia. For one thing, the number of treatment options, including tyrosine kinase inhibitors (TKIs), has increased.

There is also a thing called “treatment-free remission,” which, to be honest, I try not to think about. Been there, tried that, and did not work…not even a little.

My CML specialist a few years ago tried to give me a “TKI vacation.” It was short-lived. Without treatment, my white blood cell count and platelets quickly started rising, and vacation time was over. A couple of years ago, I had a sort of forced “treatment-free” period following emergency gallbladder surgery. The doctor felt it would be best to give my stomach some healing time. But after a month or so, things got dicey.

Not only did my blood counts increase, but they rose 10 times! Worse than that, no matter how many tries we gave my TKI to kick in and start working again, it never did. I had to switch TKIs to see if a third, “salvage drug,” would do the trick and settle things down. Fortunately, after a slow start, they did work, and thus, I am back to taking that daily dose of trauma, swallowing it every night.

Having blood cancer is not easy to accept

Sometimes, I try not to think about CML. I can put on a good act and pretend it is not bothering me at all. But that’s not the truth.

Having a chronic illness, blood cancer, is not something that is easy to accept or with which to live. Some may even say it can be traumatic. They are right.