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
Celebrating the five year cancer-free mark for one survivor amid the COVID-19 pandemic makes it all the more important.
This week, I get to celebrate six years of life after cancer. When I was diagnosed while living in Hawaii for a year, and after the mastectomy surgery that removed my left breast, I was faced with that incomprehensible task of deciding my future through drugs, radiation, clinical trials, experimental therapies and more. There were a number of recommendations from several respected oncologists, both in Hawaii and California, and I visited them to receive their advice knowing all along what my decision would be. Six years ago the standard treatment for men was simply to follow the established protocol for women. We've learned a lot since then— perhaps most obviously that male and female bodies respond differently to a variety of chemotherapies.
One of the best parts about staying alive these last six years is in being able to see these much-needed advances in medicine take place. In the meantime, I listen carefully to the stories from my fellow male breast cancer survivors of all ages and see a mix of positive and negative outcomes. About half of male breast cancer patients who take the drug tamoxifen to prevent their disease from returning report side effects such as weight gain and sexual dysfunction, which prompts more than 20 percent of them to discontinue treatment according to researchers at The University of Texas MD Anderson Cancer Center.
We don't face cancer alone. Everyone who is close to us: our spouses, partners, siblings and children, live the life of cancer vicariously through our own experiences. My first wife battled ovarian cancer every day for four years, and while she was the one who lost her hair, was fed by me through a food tube, lost her appetite and wretched violently nearly every day. I experienced all of that emotionally with her. When she died at the age of 47, a large part of me died too. Interestingly, it was suggested to me by both of my oncologists that I take the same three drugs that made up a large part of my first wife's chemical intake. That advice did not go over well with me.
So, I knew that when and if cancer ever appeared in my life, other than taking appropriate pain medication to ease my passing, I would not spend weeks or months or years feeling sick most of the time. I've never recommended my way to others. These are very personal decisions based on our view of life and death, our spiritual beliefs and our faith that the medicines we use won't kill us. Not having children to leave behind gave me a perspective a bit different from many survivors I know. Both of the specialists I visited while developing my battle plan gave me an 80% probability of living five years if I did nothing, even though my cancer was determined to be grade 3, a fast-growing and aggressive form of the disease. But we got it out with no sentinel lymph node involvement and those sounded like pretty good odds to me. I read everything I can get my hands on regarding advances in procedures to extend the lives of cancer patients and of course, many benefit from a wide variety of these methods.
But at what cost? As we learn to become advocates for our own health and futures, these decisions are likely to become a recurring event; possibly for as long as we live. These are the personal choices that we need to make, often with conflicting advice, inconclusive results and a long list of potential side effects in small print that can make our hair stand on end.
I said to my current and final spouse, "If I can live 5 years without feeling sick most of the time I'll have time to get us a new house, settling in, finish my projects, spend a huge amount of time outdoors and enjoy every day I receive". And now, six years later I have to say that I've gotten an awful lot done in these last 2,190 days, but I'm not through yet. I still haven't cleaned out the garage or taken that return trekking adventure in Kathmandu or watched our two cats growing up. I've been remarried for 16 years now and would be very happy to make it 20. So I've modified my five-year travel pass and turned it in for a new one with an open expiration date. Just to make certain I get that garage cleaned out.