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

Khevin Barnes

The word “cancer” can trigger a flood of memories, reactions and fears in many of us. I know I’ve experienced a wide range of feelings since my diagnosis of male breast cancer in 2014.

Children in particular can struggle with the emotions of having a parent or sibling with cancer, and while I have no kids of my own, I would personally want my children to understand as much as possible about my disease, within the framework of their own capacity to process it. While I can’t speak as a parent, I can certainly recall as a child how and where the word “cancer” bumped into my life—more than 64 years before I would discover the disease in my own body.

I’ll be 71 years old this month, but my earliest experience in the world of cancer is imprinted in my brain as though it had happened this very morning. Completely preserved in my five senses: sight, sound, touch, smell and even taste. I can recall it vividly as I write these words.

I was a kid sitting at the breakfast table with my parents, brother and two sisters when the phone rang. My father didn’t say much as I recall, except to thank the person at the other end for taking the time to ring him up.

We sat for a while in silence until my father spoke.“Your Uncle Carroll died this morning.”

The year was 1957 and I was seven years old. My father had just one sibling, his brother, who lived in Walnut Creek, California. We lived in Anaheim, just a stone’s throw away from the fantastical new magic kingdom called Disneyland.

My Uncle Carroll seemed special to me in many ways, though I rarely saw him.My uncle was tall like my father. He was lanky, mischievous, animated and active.He had a mustache like Walt Disney and a sense of childlike playfulness that always made me happy to see him.

A few weeks before that somber phone call, my mother and father and I were in his hospital room. I have no memory of the long drive to central California. I don’t know why my brother and two sisters were not with us on this journey, and the days before and after our trip to visit him are lost from my memory.

But in my imagination, I can see the room where he lay in bed as clearly as if I was standing in it now. I can smell the pungent aromas of iodine and alcohol, and I can visualize the single window with a view of a park and busy streets below.

I was drawn toward that window, most likely by the light outside. I remember people walking their dogs and kids playing on swings. There was running and laughing and sunshine out there.

But in the room where we had gathered I sensed a somberness from my parents, while in the big bed, my grinning uncle beckoned me to his bedside. He told me that he had a sickness in his stomach and that parts of a calves stomach might be put inside him to help him feel better.

I can recall trying to picture that in my mind, but there were so many new thoughts to deal with for a seven-year-old brain. “But what would happen to the cow?” I asked, according the recollections of my parents. At that moment, a nurse walked in to check on him and I was pulled away from his bed.

Uncle Carroll suddenly sat up in the bed with a look of delight on his face and exclaimed, “Nurse, bring this young man a chocolate milkshake!”

She left the room and returned awhile later with the sweet treat that had somehow been quickly concocted in the hospital kitchen.

Those were that last words I remember him speaking, and in the ensuing years my thoughts about cancer were in many ways conflicted. On one hand I cherished a happy memory of a good uncle, but for a long time I carried an adolescent anger over a role model taken away by a sinister disease that I didn’t understand. But that simple act of kindness from a dying man remains a gift that prepared me for my own cancer experience.

After the terror of knowing I had breast cancer began to fade, the memories of a spirit that transcends the challenges of a cancer diagnosis began to grow. Thanks to Uncle Carroll, I’ve learned to deflect the immediate trepidation of living and/or dying from a life-threatening disease by shifting my attention to helping someone else; of volunteering as a male breast cancer advocate and by offering those who are newly diagnosed a proverbial chocolate milkshake—or perhaps just a handshake or a hug.

At the end of the day, indeed at the end of a life, small things may offer big opportunities for us to leave lasting memories in unexpected ways.

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Articles

A man with breast cancer recalls his introduction to cancer as a child.

A Milkshake and Metastatic Cancer

The longer we live with a cancer diagnosis, the greater the chances are that we’ll develop other challenging disorders in our bodies and in our lives. There really is nothing startling in this prediction; it’s just a matter of simple probability projection.

Probability is the branch of mathematics concerning numerical descriptions of how likely an event is to occur, or how likely it is that a proposition is true. Put very simply, the older I get, with or without my breast cancer, the more likely it is that other organs in my body will experience the natural erosion that is inescapable in life.

To some, this may seem like an unpleasant way to look at our lives; especially those of us with compromised immune systems, late stage cancer or daily struggles with pain. But other’s may be so adept at dealing with the reality of cancer that a secondary illness is just that — secondary.

What I’ve learned in the last seven years since my breast cancer diagnosis in 2014 is that the events and issues that distract me from the business of cancer; whether it’s been my surgeries for non-cancer issues such as my double full knee replacements or my hernia operation or my kidney stones; these diversions have given me a strange sort of respite from my ongoing “cancer stuff.”

But how do we cope when another life-threatening disorder challenges our already compromised health? How do we manage compounding symptoms that double down on our struggle to survive?

Cancer is a tricky business and often difficult to measure. As I’ve watched and learned from other survivors over the years, I’ve been moved and often inspired by the men and women I’ve met along the way. It’s only natural to compare our experiences with folks who are facing similar challenges as the ones we face. We may look at the stage and grade of cancer in individuals who share our disease and make treatment choices and survival strategies based on the myriad statistics from those who are similar to us. But with an orphan disease such as male breast cancer which represents a mere 1% of all cancers of the breast, the statistical path gets a little muddied.

I’ve now met a significant number of men who have more than one cancer to contend with. But perhaps the best lessons I received in surviving multiple health issues happened to me almost 25 years ago. My wife, who succumbed to the ravages of stage 4 ovarian cancer in 1997, was well into her third year of chemotherapy and clinical trials when I first heard the word “polymyositis.” Suddenly there was a new illness to contend with. Polymyositis is an autoimmune condition, which means the body can attack its own tissues.

I remember feeling as though all the effort I had made to research, understand and relate to my wife’s condition had suddenly exploded in a new and inconceivable direction. Symptom overload, along with all the scientific gibberish that did little to educate me, was a new and unexpected phenomenon.

But the truth is that cancer, no matter how devastating it is to us and those around us can sometimes be the least of our immediate worries. That word “immediate” is the all-important factor in this case. Cancer is a delicate balancing act. The trick, I suppose, lies in our ability to shift our center of gravity (and I’m referring to “severity” and not the invisible force that pulls objects toward each other).

When dealing with multiple illnesses, symptoms and treatments, the notion of “feeding the fire” where a secondary illness is concerned, can burn itself out and lead us to a new directive, a new voice and perhaps new choices. I prefer to think of it as “dousing the flames.”

A seven-year cancer survivor writes how the disease is a delicate balancing act and how secondary illnesses can fuel the cancer fire.

Throwing Gasoline on the Cancer Fire

How we see ourselves in our cancer experience can offer a glimpse into what the future may have in store for us. If you’re like me, the view that we have of ourselves and our disease changes; sometimes minute to minute. Having cancer can become an all-consuming distraction to what we may consider to be a normal life. Certainly in the weeks that follow our diagnosis we can feel like we’re drowning as we attempt to rise above the fear or disappointment or confusion of having our world suddenly turned inside-out, while we attempt to regain a sense of balance.

In my case, once I was told I had breast cancer, I just wanted to return to those day-to-day experiences that defined who I was and how I felt before breast cancer interrupted the simple joy of waking up each morning with some sort of promise of a pain-free day ahead.

Do we see ourselves as victims or warriors; emboldened or discouraged? Are we aggressive in our battle or resolute in our willingness to accept things as they are? Do we fight or take flight? Do we curse the beast out loud for stealing our health and happiness, or reflect in silent, mindful meditation, knowing that all is well in the cosmos just as it is? We can be all these things. And we can often choose which part we want to “play” in our own show, on any given day.

With 20 years of laughter yoga, mindfulness and Zen meditation as part of my studies, I’m still astonished by the capacity my brain has to jump in and out of peace and tension, confidence and concern, fear of recurrence or the trust that my cancer is gone forever; and all of the highs and lows that we as survivors have learned to accept in our lives.

By addressing my “cancer characters” and recognizing that each of them has a different dialogue, I can remind myself that I am still the “director of my own show.”

A few weeks ago, I had a battery of tests to find out what was causing pain in my ribs, just below my mastectomy scar. I had bloodwork drawn; an ultrasound; visits with gastroenterologists; and a diet change. I was pleased when my condition improved and the tests found nothing, but you can be sure that every character in my cast showed up to give me their imaginary advice! One interesting finding was when the X-ray technician revealed that I had evidence of four healed broken ribs. I don’t recall any time in my life as an adult or child when my ribs were injured. I fell off my skateboard dozens of times, and I currently play racquetball ceaselessly. I even used to jump off walls and swung on ropes — but broken ribs?

There is some benefit to these “voices” that speak to us. In my case, while writing my stage musical about male breast cancer, I like to “hear” the characters interact in my head, almost as though I’m eavesdropping on a conversation as I write down their words. It’s often surprising what comes out in the way of fear, anger and denial, as well as the hope, humor and positivity in their words.It certainly makes writing authentic dialogue a lot easier.

The show by the way is called “The Surgeons of Solitude,” a cutting-edge musical comedy about male breast cancer. While written and scored over the last five years, it takes many years sometimes to get a show produced; so, don’t expect to see it any time soon. But one of those characters I keep hearing in my head keeps reminding me to never give up. And that’s the voice I’m listening to today.

For more news on cancer updates, research and education, don’t forget to

A playwright with male breast cancer examines some beliefs that may influence our survival.

Playing the ‘Role’ of a Cancer Survivor

Valentine’s Day is ranked No. 8 on the list of most popular holidays in the United States. While it’s not a national holiday, it is a day of celebration when loved ones are remembered, celebrated and acknowledged. But for those of us who have lost someone special to cancer, festivities of this sort can give rise to a flood of memories, and not all those memories are positive.

So, on this Valentine’s Day when people show their affection for another person by sending cards, flowers or chocolates with messages of love, we may receive not only chocolate hearts but broken hearts as well.

My wife died of complications from ovarian cancer on Valentine’s Day in 1997. And while that was many years ago, I can still remember driving back to my then empty home as the sun was coming up, and suddenly noticing how many things in the house were related to her. Everywhere I saw reminders that she had once lived there. There was art she had purchased or created. There was that funky paint job she had done to cover up a plumbing fix I had attempted under the kitchen sink. And of course, there were photographs of the two of us staring at me in every room I wandered through.

I finally fell asleep on top of the bed that I was afraid to open and disturb. And when I woke up the next morning, I recall struggling to make sense of those murky and numbing events of the previous days and months, hoping that all of it was just a bad dream. I wanted to believe that the two of us would soon be sitting at our small breakfast table with the view of our crystal blue lake just a few footsteps away from our cabin home, there in the Oregon wilderness.

Holidays can certainly be difficult for many of us in the early days after losing someone to cancer. I once asked a friend for some advice on how to manage the pain and loneliness I was feeling. Their advice was, “Immerse yourself in it.”

Over time, my struggle to move on with my solo life began to ease up and Valentine’s Day became a joyful remembrance of the good years in that relationship. The final days of her chemotherapy and clinical trials began to soften and fade.

What I learned from this experience was that holidays gradually become positive reflections of all that was good before cancer took it away. And allowing those recollections to come and go in their own time made all the difference. I simply couldn’t make healing move any faster.

And that is exactly the suggestion I now offer to others. We cannot push away pain by not thinking of it. Only in immersing ourselves in that pain of a broken heart can we find the means to mend it.

And the timeline is different for all of us. I’ve found that it does little good to tell my friends who have lost someone to cancer that it took a full two years before I had a single day without being reminded of my wife. Even now, so many years later, there are still images and recollections that pop up, especially on holidays. But today, with a happy heart, I look forward to Valentine’s Day each year, along with all the sweet memories that have survived the test of time.

A cancer survivor remembers his wife who died of complications from ovarian cancer on Valentine’s Day several years ago. His advice to everyone: Holidays gradually become positive reflections of all that was good before cancer took it away.

Khevin Barnes

A Milkshake and Metastatic Cancer

Throwing Gasoline on the Cancer Fire

Playing the ‘Role’ of a Cancer Survivor

Remembering Loved Ones Lost to Cancer on Valentine’s Day

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