Learning When Baby Steps are Enough With CML

Having blood cancer, sometimes I feel like my movements are stifled by quicksand.

There are ups and downs in life for everyone. But trudging through nine years with chronic myeloid leukemia, I think I have gained a new perspective.

Trying not to waste time

For one thing, I’m hyper-aware of time issues. It is not only the feeling that time is limited. It is a magnified desire not to waste time.

There lies the rub, as Shakespeare would say.

I can write “To Do” lists all I want but when I wake up on a “bad cancer day,” I can barely read the list let alone try to actually do the things on it.

Fatigue can be overpowering

Fatigue is overwhelming and real. It overpowers my body to a degree sometimes that it takes substantial effort to pry myself out of bed and force myself into the shower, hoping that will help wake me up.

To use today as an example, the shower did nothing to combat the fatigue I am experiencing.

I’ve been trying to go to bed earlier and sleep more. Putting aside tossing and turning and waking up during the night, the number of hours of sleep does not seem to impact the way I feel.

Instead, it is either a “bad,” day or “not as bad” day with CML. Like clockwork, I know what to expect yet it is at odds with what I want.

CML controls my schedule

Muscle aches and joint pain also affect my ability to get things done.

Fortunately, I work remotely and have the option and flexibility to control my time in that aspect. However, the CML controls me and my time more than I would like overall.

If everything hurts, getting housework and errands done besides work duties feels like an impossible task.

More items get postponed or added to the “To Do,” list, which, of course, stresses me out.

Stress magnifies my problems

And my CML specialist reminds me that stress escalates problems with my condition. I know well enough the physical and emotional consequences of having too much stress.

But that does not always translate to adopting a Zen-like state meditating or magically not carrying a care in the world. I wish.

So, things get delayed, the list gets longer and my expectations versus reality continue to disappoint.

What does this all have to do with time?

When you have blood cancer, you become more aware of time management.

Prioritizing daily goals is essential

Scheduling bloodwork, going to appointments regularly with the hematologist/oncologist and having to see specialists in other areas takes time, of course.

It also takes energy, something of which I am in short supply right now.

So that means sometimes you have to crumple up the “To Do,” list and toss it and go day by day.

I have started to prioritize each day now with the one or two primary things I need to accomplish. Period. That’s it – end of story.

Crumpling up the to-do list

It may be something as minor as putting one load of laundry into the washing machine and dryer. If I can get that done, yippee!

On days when there are doctor’s appointments, I factor in the travel time back and forth as well as the time I can expect in the waiting room and at the actual visit.

From experience, I’ve learned that these CML specialist days wipe me out completely. If the fatigue does not hit immediately, the next day I feel like I have been hit by a truck. It is a lot to take in physically as well as mentally when most of the day’s focus is on leukemia.

I used to try to fight through the aftermath but time has taught me that visit needs to be my sole “job,” that day.

I’m saying all this because I’ve completed a few tasks this morning—an online job interview and writing this column.

Later today, I have an appointment (a fun one) and an errand to run so I am trying my best to conserve energy until it is time to leave.

That does not mean I’m being lazy. (I had to learn that over time). It means I am being smart and self-aware.

Sometimes, baby steps are all I can do and all I can handle.

I must temper my expectations with reality.

To come to that conclusion, it has taken time. So live and learn, as the saying goes.