Five Lessons I’ve Learned From CML
Last updated: August 2020
I have so much to say about living with chronic myelogenous leukemia for the past five years. In fact, four days ago marked my “cancerversary,” something I never imagined would be a milestone in my life.
My story starts a couple of years before that—a time when I told any doctor who would listen that something was very wrong with me. I was tired all the time, abnormally so, and I coined the phrase, “tired like mono” to try to get my point across.
In return, I earned blank stares, eye rolls, condescending words about “people your age,” (I was in my forties at the time), menopause, stress and even that it was probably all in my mind.
I soldiered on. By chance one day I asked my urologist if I could have a print out of ninth-month-old blood work that my primary physician brushed off as fine. He happened to be the one who pulled it off the printer, glanced at it and immediately freaked out.
“What are they doing about this? You need a hematologist now!”
He saved my life.
Lesson number one: You know your body
It’s not in your mind. Forge on if you feel like something is wrong. Find someone who believes you.
Fast forward a bit. At the time, I’d recently moved to a new town, hours away from the eye rollers and coincidentally, or by fate, located near a hospital that employed a top notch CML specialist.
Lesson number two: Talk to your doctor
Be honest. Ask questions. The pair of you are in for a long haul together.
Our first meeting lasted three hours. He explained everything about CML and what the road ahead would be like for me. And, he scribbled and drew all over pieces of paper to elaborate certain points.
The session concluded with him saying I needed a bone marrow biopsy, a prospect that sent chills up my spine. Worse, that we could do it then and there in his office.
“I don’t want.. God awful, bone-crunching pain,” was my exact drama-queen quote.
He gave me a speech about numbing the area.
“But what if it still hurts?”
“You can always scream,” he replied.
That was the actual exchange.
The procedure was put off a couple of days so I could go home and wrap my head around everything.
“You’re making my head explode,” I remember was my departing shot at the doctor.
I survived. He’s survived me.
Lesson number three: Nothing compares to a bone marrow biopsy
Every other medical procedure, shot, or test cannot compare to a bone marrow biopsy (without sedation). Bring it on.
That was then, this is now, five years later.
What’s it like living with CML? Pretty bleak at times, not going to lie… but enlightening as well.
I’m on my second tyrosine kinase inhibitor (TKI). The first landed me in a wheelchair but that’s a story for another day.
Contrary to public sentiment, taking a TKI is not like taking an aspirin, vitamin or antibiotic. It’s toxic. It is delivered in a chemo bag with “hazardous materials,” clearly labeling it.
The side effects can be brutal — nausea, fatigue, bone pain, rashes and too many others to list. Some people tolerate the drug well and others do not. Pleural effusion is common. Luckily, I’ve escaped that one so far.
Which brings me to how distressed I feel when people — friends, family and others — downplay the disease and the effects of taking a daily pill to treat it.
“It’s a good thing you have leukemia and not cancer.”
“How long are you going to keep taking that pill? Aren’t you over it yet?”
Lesson number four: Stop stressing out about what other people think
It’s all nonsense and misconceptions. Educate calmly and patiently.
Finally, the last thing is this personal admission. I don’t feel like myself anymore; I’ve gained 100 pounds, a fact that numerous doctors attribute to the TKIs. I often feel sick. I don’t look the same anymore. But I know I’m the same person inside.
The people that matter know that too.
Unfortunately, several long-time friends have chosen to distance themselves. I call them “hill runners.” (You know, run for the hills instead of stick around). In case you haven’t noticed, my sarcastic sense of humor is another thing intact.
I’ve cried and worried and pondered why it is that some people don’t know what to say or how to act around me anymore. I’ve tried to reach out and failed. Then, I learned that it’s a common reaction.
Bless and release.
I can’t complain. So many people have stepped up and given their hearts to me. I have friends who would jump at a moment’s notice if I need them. I’ve made new friends. I’ve embraced new activities like singing in a rock choir.
I’m doing the best I can living this new normal.
Lesson number five: Appreciate the little things
Awesome foliage, a song you like on the radio, a stupid joke. Life’s short. Live it.
How do you feel about your support system?