Setting Realistic Expectations as a CML Patient
One of the most difficult parts of having chronic myeloid leukemia (CML) is accepting that the way my life was before, is now a memory.
After months, maybe years of frustration (with myself) for not being able to complete a to-do list (or even start it or find it!) I’ve basically stopped writing them. Instead, I’ve adopted a new mindset that even accomplishing the smallest “home” thing is something to be celebrated. It may seem cheesy to some people, but for me, running an errand like picking up a prescription or going to the post office is a big deal.
Hoping for a better day
Why is it a big deal? For one, mobility challenges are a reality now. I’m basically hobbling around with a cane and walking is not easy. I wait for one of my 'better' days when I am able to get outside, get in the car, drive somewhere, get in and out, and ultimately home.
I don’t say a 'good' day for a reason because I haven’t had one of those in a long time. If I wait for one to roll around, nothing will ever get done.
Besides, it is not really a good day when I can anticipate nausea at some point from my tyrosine kinase inhibitor (TKI), rashes and skin issues basically every day, abnormal fatigue and whatever else CML decides to throw my way in any given moment.
Some people talk about “forgetting” they even have leukemia (or fill-in-the-blank blood cancer) and if that’s true, good for them. It has not been my experience. I’m too busy working every day to throw myself a pity party so it is not that. But forgetting? Not a chance. There are just too many physical reminders and limitations.
I’d love to hear from people with CML who have experienced no changes in their day-to-day life. What’s your secret? How did you get to that point and do you have any advice for those of us who are struggling?
Focusing on what’s possible
Okay, back to to-do lists. Do it this way: If you have a few errands that have to be done, I like to do them on the same day. That way, it’s only one trip to the car and back, followed by banking, pharmacy, or whatever. Consolidating trips is helpful. The second thing is that I identify the most important thing that needs to get accomplished that is not work-related. I focus on that and let some of the secondary tasks wait. Next, I need to pace myself. Yesterday, for example, I was washing and drying dishes and cleaning kitchen counters. After about 10 or 15 minutes my back started to ache (and spasm!) from standing. I looked at the clock and told myself I had a few minutes to go and sit and regain my strength before proceeding further.
If I’m vacuuming and/dusting I experience the same problem: pain that is crippling at times. I can pull a chair out and do sections of the floor or furniture seated in between spurts of doing the rest normally. I do admit it sometimes takes me several days to get through it all because I have to focus on one room at a time. And because I work full-time (remotely mercifully!), it is usually on weekends.
In my head I know I shouldn’t beat myself up about shortcomings, but my heart tells a different story. It’s been nearly seven years now, so I spend less time looking around for the 'old' Susan, and more time trying to accept the new one.
It’s not easy but I’m not the type to throw in the towel. Acceptance is an ongoing process.
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