Khevin Barnes is a Male Breast Cancer survivor, magician and speaker. He is currently writing, composing and producing a comedy stage musical about Male Breast Cancer Awareness. He travels wherever he is invited to speak to (and do a little magic for) men and women about breast cancer. www.BreastCancerSpeaker.com www.MaleBreastCancerSurvivor.com
I'm often asked how things are going with my male breast cancer diagnosis. What's the right answer?
It was more than 22 years ago, after my wife was diagnosed with advanced ovarian cancer, that I was obliged to learn more about the disease. It was never my intention to study or research cancer, but like many of us, I was compelled by the circumstances to try to make sense of this relentless cellular intruder that creates chaos in our lives.
The ensuing years of chemotherapies, surgeries, clinical trials, feeding tubes, repeated hair loss and experimental drugs intermingled with welcomed moments of relief, hope and even laughter at times, pushed me further into trying to understand the methods in all of the madness of surviving a life-threatening disease.
And even though my own breast cancer would not materialize for another two decades, I had already formulated my own ideas and plans for how I would approach and embrace cancer, should it ever show up in my own life.
And sure enough - it did.
Naturally, much has changed in these last 22 years, and as a result, my interest in understanding cancer has increased exponentially. As I approach my five-year "cancerversary" it has become clear that there is one question that cannot be answered by me, my oncologists or any physician or scientist I know of. Am I now cancer-free? I have to wonder if that is a designation that will ever apply to me.
When we receive the coveted designation of N.E.D. (no evidence of disease) it means no evidence that can be measured. But wait, have we looked everywhere? No test has been devised (outside of science fiction movies) that can scan us from head to toe and cell by cell. So when friends or family ask me how I'm doing, I can honestly say that I don't really know if I'm cancer-free, but as of this moment I am symptom-free. And really, when it comes to just living day by day with little anxiety or pain; at least manageable pain, shouldn't that be enough?
It seems that cancer forces us to change the parameters of our lives; to accept a different set of criteria on which to base our idea of good or bad days. It pushes us to overlook the intricate details of what we think of as a "normal" life in order to even out the process of just plain living right now, this very moment, with what we've got.
As I look back over these last five years, I can see that I have only been able to judge how I'm doing by how I actually feel. Each day when I wake up and express a thought of deep gratitude for being alive, I consciously take an inventory of my body. Sometimes there is that nagging tightness in my mastectomy scar that gets my attention. More often than not there is a twinge of soreness from the multiple games of pickle ball the day before, or neuropathy in my feet from the years of competitive running; but once I pass the test and realize that there is nothing new to cause any alarm; no new lumps or bumps or fever or pain — I can see that I am simply feeling the symptoms of aging.
And for those of us with a cancer diagnosis, this becomes our job in a way. We have to learn to separate that new abrasion on our skin from actual skin cancer; and differentiate that slight swelling from our old, impacted tooth from oral cancer and understand that the tenderness in our chest from running into the refrigerator handle is not a return of breast cancer — and on and on.
We constantly diagnose ourselves until we no longer can and then — we call the experts. Like anyone else, I have cells in my body; 37.2 trillion cells on average, all of which have the ability to become cancer cells at any time. But a lot needs to happen for a cell to turn cancerous. And any cell in our bodies has the potential to become cancerous if it can divide or it builds up "errors" in certain genes; and if these defects cause it to grow out of control.
I'll never know if cancer is lurking somewhere in the darkness, infused in my blood or bone until it shows up. So the biggest lesson I've learned in living with my cancer is this. Today, as I feel a light breeze on a lovely Arizona morning and watch two doves building a nest of twigs outside my window, I am symptom-free. And on this day, that's all I need to know.