A New Twist
One thing I have learned on this cancer adventure is that I cannot predict what is coming next.
I have been repeatedly surprised in good ways, such as when I would experience a dramatic shift from ick to feeling hungry on the same day or when my white blood cell count would return to normal almost overnight or when I went from feeling half-dead to believing I received the blood of a strong and vital lumberjack midway through a transfusion.
I have also had what one would call not-so-good surprises.
I was surprised when the predicted nausea that comes with Chemo lasted longer than expected and when I would only have a few days of wanting to eat anything before it was time to repeat the whole Chemo process once again. I was surprised when my chronic fatigue was not relieved by sleep like it would when I was pre-cancer. I was surprised that my magnesium level stubbornly stayed way below normal in spite of repeated IV infusions. I was surprised when my hair didn’t show signs of regrowth on the timetable I read about on the cancer websites. I could go on here, but I think you get the picture. There is no true predictable course on a journey of navigating cancer and associated treatments.
My most recent surprise came after I completed my six rounds of Chemo. I expected to feel stronger and more like my normal healthy self as the weeks went by following my last infusion in May. Instead, I noticed I was getting weaker.
At first, I wrote off the challenge I had in walking up a flight of stairs to just being due to chemo fatigue and some quadricep and hamstring weakness due to so many months of inactivity. I told myself that the pain in my hips which only occurred when ascending a flight of stairs was secondary to some incidental early arthritis.
As with any other handicap I ran across since this circus began, I learned ways to compensate. In the case of the challenge with the stairs, I used my arms to pull myself up. I also focused on what was gradually getting better such as my magnesium creeping up and susbsequently feeling an increase in energy and interest in doing things around the house.
It wasn’t until I discovered I did not have the strength in my legs to get myself out off a low slung lawn chair after watching a parade that I knew I was worse off than I previously believed.
I immediately began an exercise program of squats, lunges, kickbacks, etc. Although I was noticing a temporary improvement in my strength, the weakness recurred and seemed to worsen. My overall energy was improving, but walking up or down a flight of stairs or even uphill reminded me of my mother doing the same activities in her nineties.
Thankfully, after a couple of months of playing the game of being attentive to what my body needed while attempting to ignore and over-ride my limitations, a blood test revealed a grossly elevated CPK level. (Normal range is 26-40) My results revealed an elevation to 2,527.
Although this finding was an unexpected twist, I was grateful to have a clue as to what may be awry in this body of mine.
To make a long story short, my elevated CPK indicates I have developed a neuromuscular disease that falls into the category of an autoimmune disorder. With this evidence, I will soon be evaluated by a rheumatologist and learn the game plan for how I proceed from here.
In the meantime, I am focusing on being grateful for the improvements I am making daily in my energy and activities. Although my legs don’t feel as if they belong to me, when I am not attempting to walk upstairs or to get off the floor, I feel like my normal self. My ability to coach and spontaneously speak to whatever is present while co-leading workshops have been pretty much back to normal. I am enjoying cooking and baking, reading, writing and engaging in conversations, just like I used to.
What I am noticing is as long as my main focus is on enjoying and appreciating what I CAN do, I am able to peacefully accept what I cannot do.
Since all things, those we call good and those we call bad, are temporary, this current unexpected twist and inconvenience will eventually change.
In the meantime, I am celebrating my enjoyment of every little thing that comes my way since I have clearly learned that nothing is permanent.