Maneuvering the Potholes of Blood Cancer
Last updated: September 2023
Having blood cancer is like driving down a road full of potholes.
First of all, you have to make sure all these dips and jostles along the way do not destroy the ride.
The road isn't all potholes
After all, in between the bumps and ruts are stretches of smooth terrain where you can see clearly ahead of you.
When those times happen, be grateful. It's an opportunity to gather yourself, get your bearings, and enjoy the stability and relative peace while it lasts. Because it most likely won't last forever.
Instead, be warned: up ahead there may be more crooked curves and turns to maneuver.
When a pothole is a sinkhole
So what are these potholes I'm talking about?
Looking back over nearly nine years of having chronic myeloid leukemia (CML), I remember quite a few.
First, the diagnosis itself is like the most gigantic, deep sinkhole you've ever encountered.
It comes out of nowhere: "Susan, you have leukemia, CML. There is no cure, no remission, but there are treatments."
In that moment, your world crumbles. You fall deep into that hole and don't know how to escape.
You'll find you may need a crane of supporters to lift and pull you out of the depths of that pit.
You will also need to find a medical team that you trust and has your best interests at heart. They should be driving alongside of you and available to pull over when you honk your horn. If they are not, look elsewhere.
Getting on that road
Once that initial plummet passes, it's time to set off on your trip, your CML journey.
My personal experiences with potholes included a terrifying scare that my cancer metastasized to my hip.
Luckily, it ended up being a clump of cells, let's call them `debris,' and I was obviously relieved. After that hump over grooved pavement was over, I rode on only to encounter some more obstacles.
More ruts and jolts
Because as years passed, there were frequently more bumps and construction sites to weave around and avoid.
In my case, a lot of these potholes impaired my mobility. The first of these was an Achilles tendon torn in several places and a Brevis tear simultaneously. It took a very long time before I was confidently able to get behind the wheel of a car again. I credit my tough driver's ed teacher (physical therapist #1) for helping me with that.
More recently, it is slipped discs, pinched nerves, vertebrae falling too far forward in places and too far back in others. Spinal stenosis.
You name it.
It's there in my path while I'm trying to travel this long and winding road. Each obstacle makes for a difficult and at times, disheartening journey.
My travel companion--fatigue
Finally, have I mentioned I'm traveling with a companion? No? Let's call her Fatigue. But she is not what her name implies. I believe only blood cancer patients will ever get to know her well. It's not "I'm tired," fatigue. It's "I Can't Move or Function or Stay Awake" type fatigue sometimes. I used to try to compare it to mono, but that doesn't quite cut it. Let's just say she is ever present and an unwanted passenger and leave it at that.
Fatigue is one of many side effects of leukemia. I admit to getting testy (road rage) when people equate it to regular tiredness.
They think it is a little rut in the road to drive around rather than a big hulking, damaging pothole.
We know better. We know to buckle up and go slowly because otherwise we're going to make the trip worse.
The in-between times
But what about the in-between times, the periods when the bumps and jerks of the CML journey suddenly give way to newly tarred spaces?
Now and then, there are times when life with blood cancer seems a little more normal.
For me, those were when I was playing clarinet in a band or attending rock concerts and could veer off the path for a couple of hours and concentrate on something other than driving.
Self-discovery as a silver lining
If I have to identify silver linings on this trip, I'd say it is the knowledge blood cancer patients gain about the people around them and themselves.
All too often with cancer, friendships and relationships crumble. The other party takes another route, dips down a side street and maybe never rides parallel to you again.
The positive here is the discovery of your true supporters, your `people.' They are willing to jump inside the passenger seat and take the trip with you or at least follow along.
Driving down the road certainly gives you time to reflect and discover more about yourself.
You will find that when you whack into a pothole and get jostled, you have the strength and ability to move and steady the car and carry on driving.
I suppose that's the positive part of this trip.
What blood cancer were you diagnosed with?