What I Learned from Ron Bye, a 40 Year Testicular Cancer Survivor

There's a concept called synchronicity that describes "meaningful coincidences", or things that happen by pure chance that are so amazing that they can just leave you stunned, as though there were a higher purpose intended. I've been in tune with this idea for awhile now, and have felt more than a few synchronicities throughout my life, and especially since I was diagnosed with cancer five years ago. Some of the things that have happened while struggling to find my way through all of this has been amazing, as a number of things just fell into place when I really needed them to, with no ability to control things on my own. There are no coincidences

In December of last year, I happened to win a Kindle Fire HD tablet in a local photography contest. I had wanted to read a number of cancer related books and memoirs for awhile, but hadn't felt like I was ready to prior. My life has been a cancer memoir in the making and an emotional roller coaster for the past few years, so I hadn't felt ready to start reading the memoirs of others. I'd tried on a few occasions, but it was just too much, too personal, and way too emotional for me. I took note, however, that I didn't win the fancy headphones, nor did I win the Bluetooth speaker that I actually wanted, but instead won the Kindle tablet. There are no coincidences. I took this as a sign that I was ready, and purchased a bunch of cancer-related books that had been on my reading list for awhile.

Life and work had been busy, so there they sat on my new Kindle for awhile, but I finally started knocking them out on our family Spring Break trip to Singapore and Taiwan, to visit family, which of course involves some incredibly long flights across the Pacific from the east coast of the United States. I read the late Paul Kalanithi's book "When Breathe Becomes Air" which was a beautifully written book about the intersection of life and death, of medicine and science, and of philosophy and religion. I was a teary mess throughout the book, but it was simply beautiful, and definitely something that I'll need to re-read to fully appreciate. Next up on the reading list was the late Wayne Dyer's "I Can See Clearly Now", much of which was about many of the synchronicities in Dr. Dyer's own life. Although not about cancer, Dyer's book helped me to understand how the simplest of things beyond our control, and even the more rotten things that might happen to you in life, can be the means and catalyst for change through which we're able to evolve or reach a higher calling in life. I've felt sychronicities like these in my own life, and especially through my cancer journey, and Dr. Dyer's perspective on the topic helped to bring an even greater sense of inner peace within me as I start to head for the door of my 30's, and leave a very long emotional struggle in the aftermath of cancer behind. I get it now. I see what he's seen, and know that I don't need to stress or worry. Little did I know, a new synchronicity was about to unfold.

Next up on my reading list was "Memoirs of a 30-Year Cancer Survivor" by Ronald Bye. Ron wrote his book in 2005, so Ron is actually a 40+ year survivor of Testicular Cancer now, and a living legend. I don't connect personally with every single cancer survivor that I run across on social media, but just felt like Ron was someone that I should know, and connected. What an inspirational man for so many of us to know, someone who had survived this disease for longer than many of us have been alive. I had previously thought about how great it would be to finally start connecting with some of these inspirational people within the cancer community in person rather than mostly just across social media, and had been thinking of ways to make that happen for 2016. As it turned out, and thanks to our new social media connection, I learned that Ron Bye just happened to be in Singapore on business at the same exact time that I was there with my family on holiday! I live in Maryland, and Ron lives in Tennessee, but we were able to meet up for drinks all the way around the world in this tiny island nation that most people couldn't even find on a map, on March 25th, 2016, our last full day in the country!!! What an astounding coincidence and example of synchronicity!

Singapore is here. Be honest, could you have found this on a map? :)

The main land area of Singapore is not even the size of the Washington, D.C. area I-495 beltway, near where I reside!

Meeting Ron Bye in Singapore, March 25th, 2016. Singapore has always been near and dear to my heart ever since I first set foot there in 2005, while also on business travel. A chance encounter with this living legend here has now endeared the country to my heart! What an amazing place, in so many ways! 

Ron Bye's Story of 40 Years of Testicular Cancer Survivorship

Ron Bye's testicular cancer story is an incredible tale of survival despite the odds, and it was a great honor and privilege to get Ron's perspective in person. When Ron was diagnosed with Stage II pure embryonal carcinoma testicular cancer in 1975, he was not expected to survive, was given only a 50% chance of still being alive after 2 years, and only a 10% chance of survival after 5 years. This was still the era when testicular cancer was considered to be a death sentence for anything but Stage I cancers, as the Cisplatin drug was still a miracle in the making, and not available yet. Ron's best and only chance of beating his cancer was with the RPLND surgery, which was called a retroperitoneal lymphadenectomy back then. As is pretty well understood today, this surgery is rarely if ever used as a primary treatment for Stage II testicular cancers that have metastasized to the retroperitoneal lymph nodes, and especially not for mostly embryonal carcinoma, as this is one of the more aggressive types of testicular cancer which can more easily jump past the lymph nodes, and which greatly lowers the chances of such an invasive (and costly) surgery actually being curative. The modern era highly effective Cisplatin-based chemotherapy protocols are used for these cancers first in most cases, but back in 1975, the RPLND surgery was the only chance. Sperm banking was never discussed at the time, and fertility preserving nerve-sparing techniques had not even been developed yet, as people like Ron simply weren't expected to survive. Ron underwent the surgery, and one lymph node was found that was positive for cancer.

Because of the cancer positive node, chemotherapy was required after this, as would be in most cases today. Ron went through a full year of chemotherapy using cyclophosphamide, vincristine, and actinomycin D combination, also known as dactinomycin. Although this early protocol offered some response, complete remissions were rare, and cure rates were typically in single digit percentages. The initial Cisplatin treatment protocol of PVB (Cisplatin, Vinblastine, Bleomycin), was still a few years away, although had started clinical trials at the time. Despite how badly the deck was stacked against him, Ron beat all of the odds, is still here today, and literally became the benchmark for other doctors to learn from.

I was born in 1977, two years after Ron's cancer diagnosis (a fact that Ron wasn't all that enthusiastic about!), during which time the Cisplatin drug and PVB protocol had reached Phase III clinical trials, all of which were wildly successful. When I was diagnosed with Stage II testicular cancer in 2011, with a case presentation practically identical to Ron's, I had the benefit of all of these decades of advancement in the field of oncology and the treatment of testicular cancers. My treatment with four rounds of Cisplatin and Etoposide (the EPx4 protocol) was considered to be a sure thing with a 90-95% cure rate, and the RPLND surgery that I underwent was more of a "just to be on the safe side" type of surgery. You'd think that all of these advancements might have made my journey in dealing with cancer so much easier, but in reality I still struggled in many of the same exact ways that Ron did in the aftermath of cancer. 

There Is No Easy Cancer

The fact is, there is no easy cancer. Whether your prognosis is poor or excellent, cancer still turns your life upside down, and the whole experience is terrifying even with an excellent prognosis. If you're given 10% survival odds, you're afraid for your life as Ron was. But even 90% survival odds can be no less frightening, because you're worried about being one of the 10% that will slip through the cracks, who will have an unexpected hiccup during treatments, or one who will have that unexpectedly aggressive cancer that just doesn't respond to treatments the way that most other cancers do. I've seen it happen.

Scott and Judy Joy, photo used with permission. Judy Joy passed away in late-2013, just three months after being diagnosed with multiple myeloma.

My friend, Scott Joy, is now a 13-year survivor of testicular cancer, and has been a hugely inspirational figure to many cancer fighters out there, and who has also helped to raise hundreds of thousands of dollars for LIVESTRONG over the years. Scott's wife, Judy, was diagnosed with multiple myeloma in the summer of 2013, and his family was once again facing cancer. Multiple myeloma isn't a curable cancer, but it is considered manageable for many years, or even a decade or longer. Judy's cancer was one that was unexpectedly aggressive, and unexpectedly non-responsive to treatments, and the disease quickly claimed her life just three months from her diagnosis. The Joy family was devastated, as were thousands of cancer fighters and survivors out there that Scott had inspired and encouraged over the years. Scott and Judy were high school sweethearts, and had four beautiful children together. They thought they still had many years together, but instead she was tragically taken from them in the blink of an eye.

This is the fear that every single person that has faced cancer has to live with, and has to find ways to cope with and overcome. There are no certainties with cancer, all bets are off, and there's no such thing as a guarantee. It's what makes cancer so terrifying, regardless of the prognosis. It's a silent killer that we can't see or hear, and while we have mountains of study modeling them that tries to predict how a certain cancer is likely to behave, cancer doesn't play by any rules, and we're left in a perpetual defensive state never knowing if or when we can ever relax. We want predictability and sure things. We want things to be 100%, and not 90 or even 99%, but cancer is anything but a sure thing - it's literally nature gone awry, and that's a tough thing to live with inside of you. 

I found it striking just how much I related to Ron Bye's story and his struggles in the aftermath of cancer as we talked and I read through his book, despite the polar opposite prognosis we were given through different eras. Both Ron and I had moderate to extreme anxiety in the years that followed, and we both nearly had heart attacks from recurrence scares. I've written extensively about posttraumatic stress after cancer, and Ron had signs of that as well. Both of us were terrified of our bodies, and also worried for our minds, and not being strong enough to make it if our cancers were to return, which is a fear that I lived with inside for years. The oncologist's joke about testicular cancer, trying to ease the minds of patients, is that testicular cancer is the most curable cancer there is, and that a relapse of testicular cancer is the second most curable cancer, referring to the highly effective second and even third-line treatments that have been developed over the decades. Insert nervous laugh. Even Dan Duffy wrote of this in his memoir, "The Half Fund", about how excited and even giddy his doctor was when they realized he had Stage III testicular cancer. I understand the oncology perspective, and how ecstatic they are about cancers they can actually cure as there are still many that cannot be, such as multiple myeloma, which claimed the wife of my dear friend. I deeply respect and admire the oncologists that developed these life-saving drugs and treatments, but when it's your ass and life on the line, it's no less terrifying for the patient.

Similar Approaches to Life After Cancer despite Opposite Prognosis

Ron and I both found a way to focus after our cancer fights. Ron described himself in his memoir as lacking direction in his early-20's when he was diagnosed, but fully immersed himself in work afterwards, and never really let up until he wrote his memoir 30 years later! When I was diagnosed with cancer at 33, my wife and I had just started a family. I felt so cheated, because we had been working our tails off through three solid decades to get to where we were in life, only to fear that cancer was going to rob us of any enjoyment of that. I focused heavily on work as well, and had just started a new job not even a month after my RPLND surgery, but dual-focused on truly enjoying life for the first time rather than working so damned hard. After I had gotten my new job lined up while going through my second round of chemotherapy, my wife and I immediately splashed out on the brand new BMW convertible that we had always wanted, and that really set the tone for the next few years. It was time to start living our lives! If not now, when? Tomorrow can be taken from you in an instant. Enjoy life today! 

I had been a petrol head my entire life, but never really had a "real" car. We love this thing, and take it just about everywhere! There's room for four! As of 2016, I'm still driving this car, and loving every minute of it. :)

Ron and I both came to accept certain things about our lives philosophically, and its nature. Ron accepted in his mind that he would once again hear the words "you have cancer" at some point in his life in the future, which provided him with the drive to focus relentlessly on work and other things in life. I developed a similar post-cancer mentality not in that I believed that I would have to face cancer again (although this was most certainly a fear), but just came to the realization of how fragile and precious life truly is, that in a moment everything can change, and how powerless we are to stop life's tragedies or misfortunes from happening to us or those we love. Whether it's a terrible accident, or a health crisis facing cancer or a disease, there are no shortages of ways in which our lives or those we love can suddenly change forever. My cancer experience burned this uncertainty about life into my mind, and taught me to enjoy what you have and those in your life each and every day. There are no guarantees for anybody, and any perceptions of that have merely been illusions. What's here today can be gone tomorrow.

Show your love to your spouse or partner in life everyday, hug your kids everyday and tell them all how much you love them. Do something fun with your family everyday. Find an external focus and things that you enjoy doing, and do them. Enjoy your friends and those that have been meaningful to you in your life often, and let them know how much you love and appreciate their presence in your life. I thought I had forever before and was in no real rush to do anything, but now I never let a day go to waste, and those that have truly meant something to me know just how much they're loved and appreciated.  

One of the biggest takeaways and most inspirational lessons to be learned from Ron's story of cancer survivorship, is to never lose hope, and especially to never place too much stock in those five year survival rates! New therapies and methods of treatment are always being developed, and this means that the five year survival rates are always at least five years out of date! It was during the time that Ron was diagnosed with cancer, and fearing for his life in the years after with such a poor prognosis, that the miracle Cisplatin drug was in its wildly successful clinical trials. Cisplatin was approved by the FDA in 1978, turning the poor survival rate on its head, and testicular cancer into a modern success story. To date, this drug has saved the lives of millions of cancer fighters out there, including my own. Advancements as seen with Cisplatin are rare, and described as once per generation, but the point is that medical knowledge is continually advancing, not standing still. As Ron states in his book, ignore the statistics and just live your life! 

I don't think it was merely coincidence that I just happened to meet Ron Bye by pure chance all the way around the world in Singapore. What are the odds? Knowing what I know and have come to believe in, I believe that I was meant to meet Ron for a reason. There are no coincidences. Ron has traveled extensively, but this was his first trip to Asia. Obviously, something was in play in the universe to allow this to happen, and I'm greatly appreciative for this opportunity. What a great honor it was to sit down with this living legend and chat about life and cancer over a few drinks, in such an incredible place. I'm still taking the magic of our encounter and Ron's perspective in. There's so much that I've learned here, I'm in the midst of a number of revelations, and look forward to sharing more in the future.

Thanks again Ron!


 You can pickup Ron's memoir on Amazon by clicking on the link.

You can pickup Ron's memoir on Amazon by clicking on the link.