Challenge Accepted: Reluctantly Living with Chronic Myeloid Leukemia
Last updated: May 2023
Something happened today at physical therapy that, to be frank, pissed me off.
To provide context, about two years ago, I began therapy on my foot for a badly torn Achilles tendon along with another tendon tear and things like plantar fasciitis. I completed therapy despite starting from square one, fresh out of a hard cast and boot, barely able to hobble a few steps. It should also be noted CML side effects are ever-present and not helping the situation.
Thanks to a lot of hard work and a therapist who pushed me to the max and beyond, my foot and overall strength improved. After “discharge,” I even voluntarily paid for further conditioning/training classes a few times a week in a transitional program offered to patients.
I added aquatic therapy (it’s a treadmill in a pool) once per week, despite having gained more than 100 pounds since I began taking the TKI called Sprycel (dasanatib) six years ago. I had to swallow my pride and get into a bathing suit for the first time in a decade. This physical activity gave me a boost in mood and I felt physically better than I had since diagnosis.
What does any of this have to do with living with chronic leukemia? Do I think I deserve a medal and lavish praise? No.
I challenge myself every day
Fast forward to the present, after several months away, I’m back at therapy for plantar fasciitis in the opposite foot and excruciating heel pain. I’m working with a therapy assistant who knows full well my situation.
“You should try to challenge yourself a little,” she scoffed, when I reached over to hold onto something to ensure my balance. She would have preferred I perform this new move 'free style,' unaided.
It was not the words, but the tone. I started thinking immediately about the word “challenge,” and what kinds of challenges people with blood cancer face.
Some mornings, for example, it is a challenge to get out of bed.
Most mornings, it is a challenge to walk, prepare breakfast, take a shower, and dress without getting completely fatigued and wanting to collapse or return to bed.
It’s challenging to force myself to eat when I’m nauseous or have no appetite or burning stomach pain.
I’m challenging myself when I smile and tell people I’m okay even when I’m not.
It’s a mental challenge to live with the reality of a terminal illness, thoughts that creep in even on the better days.
It's a challenge not to throw myself a pity party.
Living with blood cancer is challenging enough
This week, it’s a challenge to sit here and wait for BCR/ABL results that were on their way in the wrong direction last time and maybe doing that roller coaster thing again.
And, it’s a challenge to keep my mind alert, work several jobs from home and deal with the ever-changing, shaky journalism industry.
Finally, it’s a challenge to do physical things—walk even short distances without getting out of breath, try to tackle stairs, open jars, vacuum, and perform household tasks. The list goes on.
Just because on the outside, we put on a “brave” front doesn’t mean that things are easy for people living with blood cancer. They’re not.
So don’t talk to me about challenges. I’ll continue to do the best I can even when I’m in pain and suffering from all of CML’s side effects. Or, blame the problems on the daily life-saving drugs.
And, if I need to grab onto something or someone for support, to keep balanced, then so be it.
How do you feel about your support system?