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
Having cancer is a ghostly experience, and surviving may feel like a shot in the dark.
Like most of the people I've met with breast cancer, and especially the men I know, this disease caught me by surprise. If you imagine all of the ghouls and skeletons and ghostly apparitions of Halloween; the horror of a cancer diagnosis pales in comparison.
It appeared out of the blue - or in my case, out of the black, to insert a lifelong venom of sorts into my future. That's the downside.
Surviving cancer can certainly be a tricky business. Chemotherapy. Radiation. Aromatase Inhibitors. CAR T-cell therapy. Stem cell transplants. Immunotherapy. And much more. But either in combination or alone, some of these new advances in treating breast cancer are showing promise. That's the upside.
But for someone in my shoes who, after very careful consideration, elected to forego all forms of conventional therapies regardless of any positive statistical outcomes, the process of recovery and survival becomes somewhat murky. There is very little to measure the outcomes of breast cancer survivors who choose to buck the odds and take the risk of missing cancer's treatments and potential "treats" while accepting the possibility of recurrence along with cancer's tenacious "tricks".
My longtime oncologist, a woman who I had chosen very carefully, retired a few months back in order to spend more time with her young children. Her replacement, a man, greeted me in our first meeting with a look of alarm on his face. Reading over my chart he said "Wow! You've said NO to everything!" He was referring to me declining to take Tamoxifen for 10 years, along with extended weeks of Adriamycin infusions and a round of Cisplatin. His job, and I'm certain he did it reasonably well, was to prescribe one or more of the current cancer fighting therapies I mentioned earlier. His job was to prescribe drugs that, to the best of his knowledge, would help me to keep living for an indefinite time.
I remember thinking that contrary to his point of view as a clinician, I had in fact said YES to everything. But it was everything that I believed in. It was important to explain to him that simply living more years, possibly with deeply troubling side effects from the medications, was neither my priority nor my desire.
There are serious cancer drugs that carry a chance of delivering serious side effects - but of course, not for everyone. A great majority of the guys with breast cancer that I know have received some chemotherapy, and quite a few have done well; but not all of them. As cancer survivors, the choice of procedures that may or may not extend our lives is ultimately one we must make ourselves. I've experienced this dilemma first hand, watching my wife endure a variety of clinical trials and experimental drugs before dying of ovarian cancer in 1997.
So with regard to my new oncologist who seemed exasperated as he exclaimed, "So what am I supposed to do for you?" (Not a bad question but I never returned to see him again). I had let the "black cat" out of the bag. My secret was exposed. I had chosen the possibility of a shorter life, while getting my things in order and enjoying every remaining day I had, over launching a battle with a disease that had so many possible avenues in which to fight it that it had become difficult at best to make those choices. My odds were estimated at 80% to survive for 5 years according to two experts I consulted, and that was plenty good for me. This approach won't make sense to many, but then again, it's not supposed to. I don't recommend my way of dealing with this breast cancer of mine to anyone else.
Cancer, it seems has many different elements and stories and experiences that influence every choice we make. And when you boil it all down, like a bubbling witch's cauldron on Halloween night, survival is all about our choices.
The American Halloween tradition of "trick-or-treating" probably dates back to the early All Souls' Day parades in England. During the festivities, poor citizens would beg for food and families would give them pastries called "soul cakes" in return for their promise to pray for the family's dead relatives. I've received my own "soul cake" in five years of living symptom-free with male breast cancer. I'm well aware that this could change at any moment. But I've always known that. Breast cancer can knock at my door again, any day it chooses. Or not. And regardless of what I find there, I'm fully committed to answer that door.
Trick or Treat?