The Life Lessons of Living with Leukemia

The song “You Can’t Always Get What You Want” is running through my head today.

What do I want? A life free of blood cancer, that’s what. But as the Rolling Stones put it, I will not be getting my wish, not with chronic myeloid leukemia.

A decade of wishing CML would go away

It has been almost 10 years, a decade, since my diagnosis. Trying to dole out some positives, I have been thinking about what, if anything, I have learned from this blood cancer experience of mine.

And, I figured out that CML has been a teacher. My lessons all seem to revolve around the condition, making me “toughen up.”

Asking questions as a rule

First and foremost, it has taught me to stand up for myself—to take charge of my medical situation as much as possible. I do this through research, asking questions, and not leaving a doctor’s office without knowing exactly what is going on.

This scenario is a far cry from the past when I was too shy to push a point and meekly just took a medical professional’s word at face value.

I trust my hematologist/oncologist. I like to say he has my back. And he knows me well enough to know I will ask questions and get to the bottom of things without being obnoxious and disrespectful about it.

Related to that, having leukemia has taught me to put other parts of life in perspective. It is so pointless to worry about stupid things. I try my best not to freak out if my drive-thru order is wrong or if some little inconvenience happens. It is not the end of the world.

Not sweating small stuff

I trot out my saying, “I have bigger fish to fry,” which I took from my primary doctor 10 years ago. I was ruminating about some minor medical tests and other things going on. She stopped me and said, “Don’t worry about that Susan. You have cancer. You have bigger fish to fry right now.”

I say that to myself and others now at least a couple of times a week. It sums up the “don’t worry about the small things,” philosophy perfectly.

Next, it has made me physically tougher. I used to faint from a prick for blood on my finger and now trips for blood tests can involve six, even nine vials of blood at times. Often, the phlebotomist will say, “Wow. No reaction. You didn’t even flinch!” or “Well, that was easy.”

My non-reaction happens with other procedures or things that cause pain and once would have put me on the floor.

The reason? I will reply with another worn out cliché: “This isn’t my first rodeo.”

Do unto others?

Blood cancer has also opened my eyes to the way others treat leukemia patients.

I lived in a TV movie world where leukemia patients received oodles of support and people flocked to rally around them to help. I am not alone saying blood cancer (or any cancer for that matter), appears to drive people away.

For whatever reason, some people cannot cope with being around someone with a terminal illness. Oh well. Imagine how the patient feels but I digress.

So, blood cancer weeds out the true supporters from the “thanks but no thanks” folks.

That’s okay. I have learned to accept that too.

Living with leukemia makes me more self-sufficient. I’m constantly adapting my life to deal with my evolving physical limitations. Blood cancer has taught me how to plan outings, handle the ins and outs of the medical system, conserve energy when necessary and learn when to ask questions.

It is up to me to take care of myself and I’ve learned how to figure it out.

Comfort in nostalgia

Finally, blood cancer has made me appreciate all the opportunities I had in the past.

It makes me happy to recall all the travel adventures, endless concerts and plays I attended and just day-to-day fun like on the beach, at the movies  or just chilling and feeling physically healthy.

Now and then, when I am forgetting not to sweat the small stuff, my CML specialist likes to remind me to focus on the big picture (living with leukemia).

That is a full-time job. It is not an easy one but it comes with a lot of lessons.

Even though I can’t always get what I want, I do get that.