Following the Road Signs of Cancer
Last updated: September 2023
After nearly nine years of living with chronic myeloid leukemia (CML), I think I should have paid better attention earlier on to the signs along this road.
I’m not talking about signs like fatigue or bruising or weakness. I’m referring to things you’d see on the side of a literal road.
Steering around potholes
After pondering the “potholes,” of my journey, I realize that travelers like us (if we are lucky) are given a lot of tools to steer us away from harm and direct us to a safer route.
But when we’re caught up with a new diagnosis and struggling to cope with the “new normal,” it’s easy to get blind-sighted, side-swiped, and frankly, lost.
So, let’s start with pre-diagnosis. If your experience is anything like mine, I realized more than a year before that I was not well and something was seriously wrong with my body.
Listen to your intuition
Call it a sixth sense or intuition but I ended up obviously being spot on. Instead of listening to my concerns and complaints, however, I was dismissed by more than one doctor as imagining things and as a hypochondriac. My symptoms were fluffed off as the result of my age (40s), menopause (which was not an issue because it happened years before with a hysterectomy) and most commonly, stress.
I was told to work less, relax more, take a vacation. During my last visit with my then-primary, I saw her roll her eyes when I was talking so I abruptly stopped.
“Never mind,” I said. “That’s it.”
My head was telling me that she would never listen to me so why bother telling her how abnormally my muscles ached or how sick I felt. My mind was racing about how I could switch doctors or if that even was a thing. (I only learned in recent years that “firing” a doctor is definitely an option).
Caught in the act, she got flustered. “No, no,” she encouraged me. “I want to hear. What else is going on?” I didn't elaborate.
I remember clearly leaving the room that day with an afterthought. “How was my bloodwork the last time?” I asked near the doorway. She scurried over to the computer because now she wanted to project a caring persona. “It’s fine,” she said, barely looking at the screen.
“What is the date on that? Is that the most recent?” I continued. She assured me the bloodwork (from nine months before) was dandy. It was not.
As I’ve mentioned before, something told me to get a written copy of the results.
I asked exactly that from a specialist doctor the next day with whom I happened to have an appointment. Fresh off the printer, I learned that my bloodwork was not fine and instead, the results showed numerous categories in bold red as “critically high.” The rest is history.
The signs in my head
The signs screaming in my head those preceding months were “Warning” and “Danger.” Even though I read those signs, sometimes others, including doctors, are in a hurry and speed on by.
If I had to do it over, I would realize I needed to “Stop,” and hightail it away from doctor number one long before the eyeroll day.
So now I had a diagnosis, new doctors including a CML specialist and I was living in a new town. It was unchartered territory.
Although I researched my condition and asked questions of my hematologist/oncologist, I wish I had taken it “Slow,” and tried to digest the situation instead of going the “Wrong Way,” and pretending like my life would carry on the same.
It is not the same. Not even close.
I also probably should have thrown away the “No Trespassing,” mentality and better shared information about blood cancer and the emotional and physical toll it was taking on me with my inner circle.
I should have proceeded with more “Caution,” given myself more breaks and realized that leukemia comes with a lot of “Speed Bumps Ahead.”
Some advice from a leukemia long-hauler
“One Way” patients with CML and other blood cancers can help themselves is making sure all their questions are answered at every doctor’s visit.
Simultaneously, make sure you “Do Not Enter,” into a doctor/patient scenario where the physician won’t answer said questions, dismisses or gaslights you or otherwise makes you feel as though he/she doesn’t have time for your care.
Outside of the medical setting, anticipate that your condition may be regarded as a “Hazard,” to friendships, family relationships, and even to people you may not know well.
Although not all patients are ghosted, some are. I spent way too much time and energy dwelling on that aspect of my journey early on.
Yes, it’s hurtful but another piece of advice: join a support group, seek counseling or pick a willing confidante to help you through the emotional side of your illness.
You are not alone. There are other people using the same roadmap and they get it. Find them.
How do you feel about your support system?