My Quest to Find My Pre-Leukemia Self

As a writer, some of my best ideas and thoughts arrive at unexpected times. Such was the case today when I was driving home from occupational therapy.

This is my first stint ever with occupational therapy. The cause of my problem is my occupation. Typing all day has aggravated my thumb and wrist with carpal tunnel and tendonitis. In the scheme of things, it is no big deal. I like to say I have bigger fish to fry.

A big fish called CML

In this case, my big fish is a shark called blood cancer, specifically chronic myeloid leukemia or CML.

CML decided to insinuate itself into my life back in 2014. It was not as if before then I was the picture of health. However, in retrospect, I was handling things—running around interviewing people as reporters do--and finding time to exercise, hang out with friends, and do things I enjoyed outside of work.

But when leukemia reared its ugly head, all bets were off. It took a few months to digest the news, come out of a fog and adjust to life going back and forth to the medical center for bloodwork and appointments.

After a while, side effects, complications and my body’s response to treatment called tyrosine kinase inhibitors (TKI) took their toll. Some friends, several of whom I had known for a long time, decided it was easier to disappear or “ghost,” me rather than hang out with a blood cancer patient.

Running for the hills

These people are who I now refer to as “hill runners.” Get it? They ran for the hills.

But back to the label of “blood cancer patient.” I’m hesitant to confess that when I was newly diagnosed and even a few years after that, when I would walk the halls of the cancer center, reading the various signs and seeing patients with IV poles, using wheelchairs and otherwise appearing unwell, my heart went out to them.

I would think, “Oh, that poor lady has cancer,” and continue to flounce to the lab where the phlebotomist would draw 7-9 vials of blood and send it off to be read afterwards by my hematologist/oncologist.

Recognizing "Cancer Girl" in myself

As time went on, my oblivious sympathy was replaced in those halls by the thought, “I can’t believe I’m in a cancer care ward at a major medical center. I was the cancer patient now (or “cancer girl”…though it has been years since I was a girl.)

I was one of those patients, looking not so hot, and going to get the help I need in the most appropriate place with a CML specialist.

Reminders of a former life

So what does this have to do with my ride home today? As I drove, I passed by some unfamiliar coffee spots, restaurants, convenience stores etc, and thought about the days when I would just pop in, meet a friend for lunch, check out a new place or run errands.

Sorry to say those days are largely over. My rare trips out involve medical things 95 percent of the time. They also require logistical planning sometimes to the point of insanity.

This week, I had workmen outside my apartment door leading outside, digging up bricks and then stacking them high in a square, essentially trapping me in. I had to remind the landlady that I need an opening I can fit through with my walker to get access to the driveway for said medical visits.

I constantly must map out extra time thinking how I’ll get from point A to point B.

Nostalgia for pre-leukemia days

Nostalgia swept over me during that car ride. I thought about calling a friend I have not spoken to in months—maybe just to talk or plan a future outing.

I thought about how I could probably dig out some CDs (yes I’m that old) and DVDs (ditto) and re-institute my Friday movie nights where it is just me and entertainment. Laptop and phone must stay off.

As I hobbled through the opening between stacks of bricks, clinging onto my walker, I really felt like CML Susan. But somewhere in the back of my mind, there was a flicker that I could find the “real,” me, the one not defined with a blood cancer patient label.

She is in there somewhere. I just need to keep looking.