Two Canes and a Wheelchair
Or...How I’m Rolling with Side Effects
Does anyone else remember the movie, “Four Weddings and a Funeral?” Well, these days my life has become “Two Canes and a Wheelchair.” And, throw in a walker at times for good measure.
Is this part of the CML?
That’s not to say everyone with chronic myeloid leukemia (CML) will ever need these aids. In fact, I’m seven and half years into this blood cancer experience and my road has only recently taken this turn. The thing is—we don’t have any idea if CML is at the root of these problems—or if it is something else. I’m in the process of finding out and hope to have answers soon—fingers crossed.
An understatement: a rough year so far
To catch you up, I’ll roll past the dental surgery, car accident, and bout with COVID that derailed me in early 2022.
What’s followed has been feet skin discoloration, numbness and tingling, heightened lymphedema, ringing ears, neuropathy and worst of all, loss of balance and stability when walking.
Using a cane
For clarification, I’ve been walking with a cane outdoors since 2018 when I badly tore my Achilles tendon and went through months of rehabilitation for it. Where I live, there are a lot of nooks and crannies on pavements and roads and after a hard fall in the aftermath, I try to be careful.
In my apartment, however, I’ve always just walked “freestyle,” since the cast and boot came of...up until the last few weeks, that is.
When testing unveils something new
In the process of testing for the aforementioned problems, it was discovered that my B-12 was very low. Some sort of absorption issue?
Ding. Ding. Ding. So that’s why I was getting wobbly, stumbling and feeling new numbness where it hadn’t been so bad before? Not necessarily.
The plan was to have weekly B-12 shots, followed by a series of monthly ones. However, after having about a half dozen shots—new numbness and tingling was happening as was that feeling of unsteadiness—I asked that my B-12 be tested again, to find out if it was improving.
Note: Sometimes you have to take matters into your own hands with your medical team. I had previously asked the protocol for finding out if the B-12 shots were working. I was told I would have to wait until late summer, at the end of them all.
Lo and behold, not only was my B-12 number not improving, but it dipped significantly lower than when I started! Doctors scrambled into action, exclaiming that it was too low and something must be done!
The long and winding roads
And so began my daily trips to the medical school complex/hospital where I get my care. That’s where the wheelchair comes in. To my amazement now, I look at the tremendous distances I’ve been hobbling for years from parking lot to lobby, from lobby to check in, from check in to the examining room. You get the picture. Long, long hallways.
The first thing I do now is use valet parking. It’s safer than trying to walk the rather long distance outside from the rutty parking area to the buildings. From there, I get a wheelchair to get from here and there and then back again. You know the drill.
Maneuvering at home
When I’m home again, I have a series of cinder block type stairs to battle in order to get to my door. For several weeks, I propped one side up with a shovel and used my cane on the other to manage. Finally, I caved and ordered a second cane.
It’s a strange sight to walk with two canes, but it does keep me upright while having these challenges. Whatever works, right?
Back in February, my hematologist/oncologist took me off Sprycel, the tyrosine kinase inhibitor treatment that I’ve taken daily to treat my blood cancer. This move was done to see if the pills were causing vascular/circulation disruptions. Still in testing mode on that.
Maybe that was the cause
When things started going south around that time, I came to the conclusion that was the cause. The doctor disagrees but we’ll talk about it more next week.
It can be discouraging to need two canes, a wheelchair and a walker these days to move around but I tell myself “Safety first.” (Let me be clear that there is no shame in using aids—even people `aides.’)
Still, I reflect back to last April when I was working with a personal trainer/therapist. We would walk the length of their “football field,” style gym floor—back and forth twice as a cool down. That was after an hour of exercise/physical therapy three times per week.
My goal is to do that again someday…after we find the answers.
Have you experienced any unexpected side effect?
Have you taken our In America Survey yet?