Confessions of a Reluctant Blood Cancer 'Warrior'
So last week marked the seventh anniversary of my blood cancer diagnosis. For those who don’t know the story, I have chronic myeloid leukemia which is also called chronic myelogenous leukemia. My treatment involves taking a medication called a TKI (Tyrosine kinase inhibitor). It causes a bunch of problems for various organs and several side effects for some patients.
It's not easy
Sounds easy? It’s not. I’ve gone from a fairly healthy, roving reporter, concert-going, travel enthusiast to being barely able to walk some days, bogged down with fatigue, pain, nausea, and a host of other physical problems I won’t get into. That’s not the point.
On my Facebook page (yes, I’m that old!) I wrote a little something about the anniversary and thought that would be that.
Almost immediately I started getting messages from people, including some who don’t talk to me in real life. (That’s a topic for another day!). These rah rah messages called me a hero, a survivor, a warrior. While I appreciate the enthusiasm, the terms definitely make me feel weird and uncomfortable - at least two of them do.
I’m forced into this new life as a blood cancer patient and feel very limited in terms of what I can and can’t do. A hero runs into burning buildings to save people. I can barely get off the couch on the first try. Seriously.
A hero does some noble act on behalf of someone else—saves the day, so to speak.
While I wish I could be that, again, my mobility difficulties hold me back in so many ways. I’m not feeling very useful these days.
That’s another word that makes me uneasy. I think when you survive something, you put it behind you. I haven’t “finished,” a thing. CML has no cure. It’s said there is no “remission,” per se either. You either respond to the TKI or you don’t.
Some people have to try several TKIs until one gives them good results and keeps the levels of cancer in the blood at bay. For others, a stem cell transplant is the only option for survival.
If I had a cancer that could be taken out surgically and then not have traces of it, I’d call that being a survivor.
However, a wise person recently told me that even if you “survive,” one day with blood cancer, you are still a survivor. I’ll have to try to wrap my head around that concept more firmly I guess.
Finally, “warrior,” was another word thrown out to describe me.
The definition is as follows: a brave or experienced soldier or fighter.
Okay, that’s better. I can get on board with that one. 'Fighting' speaks to me. When you have blood cancer, you have to fight mental and physical challenges every day. You have to fight to accept your life will never be the same again. You have to fight to slap a smile on your face and act like everything is okay when it is not.
So, okay I agree that blood cancer patients, including me, have to be warriors. We soldier on. We endure.
Do you experience brain fog?