World CML Day: The Five C's of Chronic Myeloid Leukemia
It’s my observation that the “chronic,” part of chronic myeloid leukemia (CML) is what trips people up. It’s probably why I’ve heard the question: “Aren’t you done with that yet?” more times than I care to count.
By the way, my answer is, “I wish.”
For people living with CML, the chronic nature of things is a bummer. There’s no cure so you either have to live with it and all its strange features or not; that’s the alternative. And, I, for one, am not ready to give in or give up.
That’s not to say that what I’ll call the “C’s of CML” are a walk in the park. They’re not. But because I’m thinking about them today, I thought I’d share:
I guess one of the most obnoxious parts of CML for me is the fact that I’m always tired. I’m not talking about, 'oh, I need a quick nap' type of tired, it’s more like, 'I can’t keep my eyes open or function at all and need to collapse' tired. When I was trying to explain this symptom early on to doctors, I called it “mono-like” tired. Anyhow, chronic fatigue is probably the number one issue for me living with CML.
Again, pain is a problem that is difficult to describe and put into words because it feels nothing like the pain I’ve experienced in other situations or with other medical problems. This pain is felt deep inside the bones and gives the sensation that something is trying to pound its way out to the surface. It actually makes me want to scream. Even that explanation doesn’t quite cover it or go far enough.
A second type of pain is what I told my oncologist/hematologist is “zappy” pain. He replied that he knew what I meant when I told him little explosions seemed to be going off inside my legs mostly but now and then in my neck, back, and elsewhere. Not fun.
Chronic skin issues
Boy, has this one been a problem for years. My skin is very sensitive and I have allergies, more than I thought a few years ago. In addition to weird rashes popping up almost daily, I’ve been dealing with “flushing” of the face for more than two years.
I’ve traipsed back and forth between dermatologists, allergy doctors, primary doctors, etc. and they can’t pinpoint a cause or what to do about it other than say 'try to live with it' because it is not life threatening. So there’s always Benadryl.
Chronic emotional impact
I’ve talked about this before but the constant see-saw of up and down waiting for BCR/ABL and other blood test results takes a toll. So does the reaction of other people who either minimize, ignore, or downright misunderstand leukemia.
I’m too tired, in too much pain, and too itchy to cope some days. (See what I did there? See numbers 1-3.) It is also a tough pill to swallow, living with a terminal illness and knowing it will stay with you, through no fault of your own, forever. Can I sum that part up with, “it sucks?”
How did this happen? Why did it happen? Will the TKIs keep working? Will I have to switch treatment again? Will it progress to acute or blast phases? In all honesty, I try not to think about the last one but all of these thoughts come to mind now and then, not going to lie. And then there is the question I get more than any other one: “Are you done with that?”
It’s chronic, it’s here, so the answer is no. The only thing I and others with blood cancer can do is continue with the journey and do the best we can. Yes?
What type of blood cancer are you or your loved one diagnosed with?