The Meaning of Normal
We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.
I have been fascinated by the suggestion that life with cancer somehow equates to "a new normal" in my family's existence. I don't know what that is supposed to mean, exactly; isn't "normal" supposed to be an objective center, a median experience, the fulcrum of an ever-swinging scale? But nowhere does the relative nature of normality present itself so clearly as with the slide into a chronic, managed illness.
When my wife was pregnant, there was a moment when I snapped an image of her with a forced smile as she held up the hospital's graphic of small round, colored faces in various states of smiling or scowling. The laminated card was supposed to function as a helpful communication device, whereby a patient could non-verbally express a state of well-being or a level of discomfort, and it seemed like a useful tool. I had never seen one of these before that day, some eleven-odd years ago, but I have become increasingly acquainted with the symbols since.
What's normal afterall?
Every time I check out of my infusion center, there is a digital survey waiting for me on an iPad. All it has for choices are those same five faces, beginning with a big, green smiley face on the left and ending with a red, round grumpy face on the right. The words under the stages of smiles may differ from presentation to presentation, but the center one is always the same: yellow circle, the mouth as a short, straight line. It's the neutral expression, the implication of average. Wouldn't this be normal, the feeling between the highs and the lows? Of course, since my experience is always so excellent, I automatically press the greenest, smiliest face on my way out. But do I press this option because I want to be supportive of the medical team, or because I feel that my time there was extra-exemplary? Perhaps I am simply in a good mood when I leave and judgment or reason does not truly come into play.
Recently, I began participating in a new patient-centric web study that has, as a component, a daily email link to update how I am feeling. The concept behind it revolves around aggregating data from patients with similar conditions, to find common patterns and perhaps help with refining treatment options down the line. So most days, I click a link that brings me to a page with those same smiley faces I have grown so accustomed to. These are supposed to reflect how I feel -- from "Very Good" to "Very Bad," with "Neutral" in the center, of course. I began clicking the "Very Good" face a few days before my last infusion. I tend to think of that period as "my best," in no small part because I tend to have the most energy and best emotional outlook of my cycle when I am farthest out from being suffused with the chemo drugs. On the day of my latest infusion, I came home and clicked the link, then clicked the "Very Good" option again. I almost always feel great right after my infusion; it takes a while for the drugs to take effect. And I'm not so strung out yet from only one night of steroids. So, sure, "Very Good."
The impact of cancer goes beyond smiles & frowns
The day after my infusion, I clicked through again, "Very Good," I thought, considering, and closed the tab on my browser. Then I paused, realizing how strung-out I was feeling from a second night of unsatisfying sleep and making a mental note of the vague nausea hinting around the edges of my gut. Still, for 24 hours into my cycle, this was "Very Good," and I was certainly in good spirits... The third day in, I chose "Neutral" as I clicked in for my update. It was a deliberate choice. I could not state unequivocally that I was feeling great, nor that I was terrible, but not because I was unaware of how I felt. I did feel quite gross, actually, but I also had a good amount of energy and knew that I could push through the ill feeling with minimal effort. But this gave me something new to ruminate over.
In the end, I'm not sure how valuable these designations are. My "Good" might not only be another person's "Bad," but it might even be my own previous "Bad." I am inclined to think that the sliding scale with which we rate how we are feeling is not only influenced by the short-term fluctuations, but also by long-term experiences. Moreover, when it comes to issues of pain or tolerance, everyone brings their own varied baseline. I might deal with pain easier than someone else, but that does not necessarily mean that I feel it less -- still, it translates into putting less weight on the pain and how it affects my well-being. The same might be said of nausea or irritability. How we choose to process and channel our emotions and the physical effects of whatever we are going through may just have more to do with our smiley face of choice than the actual physiological aspects of what we are going through.
I wish there was a better way to express how we, as patients, feel. In lieu of that, however, I suppose I could also hope that more of us feel inclined to click on the green one with the biggest grin.
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What is the most useful part of this online community?