The irony had not been lost on me that, literally, a week after my 5 year oncology follow-up for testicular cancer, that I would be hopping on a plane to attend the celebration of life service for a young man who had died of his cancer after 9. Make no mistake, reaching 5 years cancer free and being formally discharged from the care of my oncologist has been a huge moment for me - I only need some limited checks that can be overseen by my primary care during annual physicals now. I’ve finally felt a sense of closure in a way that I hadn’t after Year 2, when every oncologist told me that my odds of a recurrence had basically zeroed out at that point. If that were really true, then why did I continue to need follow-ups through Years 3, 4, and 5? The answer is because although they're very rare, clinically late-recurrences of testicular cancer can and do happen, and are extremely dangerous and terrifying. They typically have a poor prognosis, the odds of survival aren't very good, and they can happen to anybody. This is something that could still happen to me today, and it's exactly what happened to my friend.
My friend who died wasn’t just anybody. His name was Jordan Jones, and he was the son of the Founder and CEO of the non-profit Testicular Cancer Awareness Foundation (www.tcafinfo.org), for which I’ve been blogging for the past few years. Jordan was diagnosed with Stage 4 (3c) Testicular Cancer at just 13 years old in 2007, and his survival back then was a miracle. Jordan lived an amazing life, and the news of his late-recurrence at his 7 year check-up came as a shock to everybody. Jordan fought hard for nearly a year, but there was nothing that could cure him him, and he passed away on June 8th, 2016. I’d known periods of huge contrasts in my life after cancer before, but none like this. Here I was quietly celebrating 5 years cancer free and finally feeling the closure that I had longed to feel for years, and so much weight being lifted off of my shoulders, yet feeling so humbled at the same time by the death of my friend, while prepping my eulogy speech to deliver at his celebration of life service on July 8th.
Balloon release at Jordan Jones Celebration of Life on July 8th, 2016, in Grand Junction, CO.
So what changes in my life moving forward, now that I’m five years cancer free? Ask me when my next oncology appointment is, and for the first time I'll be able to tell you that I don't have one. It feels so liberating in a way that I don't even know how to describe yet. Do I forget all of this, and go back to living my life how I did before? Not a chance. Cancer and the challenges of life after have marked my life in ways that are permanent, and I've had to evolve in ways that are permanent in response. There's no going back.
A cancer diagnosis as a young adult is a very deeply traumatizing experience in that it strips us of every sense of security that we might have had about our lives, our health and supposed longevity, and our futures and if we'll even have one anymore, all during the period of our lives when we're supposed to feel invincible. The cold hard truth is that I've never regained even a single bit of this shattered false security back at any point in the past five years. That tree burned to the ground and was never going to come back to life, but a new one did start growing right beside it, out of the ashes.
I've gained a new sense of security over these years by learning to live fully in the moment, and by never wasting a day. People who know my family and I well know that we're always going places, doing things, and having a great time on our own and with friends. We can never know how many days we have, or if our cancers will come back or not. Living my life fully in the present each day, helps me feel secure in that I'm not wasting my days or my life. Life is short, live it well. I've also found a sense of security from all of the writing and cancer advocacy and outreach work that I do. It's a purpose fulfilled, and a way to give back to humanity and a community that I couldn't have been without. Lastly, just in the past year, a newfound sense of spiritual security has finally taught me how to stop being afraid of death and dying of cancer, and how to live my life for the first time without these fears continuing to haunt me. These three things, living life fully, finding and having a purpose, and a strong sense of spirituality, are what provide me with that inner security today that we all need. It's a very different sense of security than what most people have, and a far different way of life and living than most, but such is the life of a young adult cancer survivor.
One last beach trip. Living life fully, Virginia Beach, VA, September 2016
I fully expected to feel the closure that I do today after just two years rather than five, but never did. I even sent a big message out to friends, family, and colleagues at the time, thanking them for all of their support after I reached two years cancer free, thinking this was finally over, but I was still just as afraid in the months after as I was before. Surviving cancer can be a long journey. You'll feel closure and a sense of having moved on when you were meant to feel it, and when you're truly ready. I'm so grateful to finally feel that closure today. It's all of the changes that I've made in my life, and all of the ways in which I've evolved past cancer, that have finally allowed me to feel this. It didn't just happen by itself - I've been working hard at it for years, and it's bittersweet to finally feel it.
So what changes? How do I live my life going forward? The answer is that I keep living exactly as I've learned to live in the aftermath of cancer. As I wrote in the eulogy speech that I delivered to 200 of Jordan's friends and family at his celebration of life on July 8th, Jordan and the Jones family inspired me as a cancer survivor not just for their incredible story, but by how they lived their lives in the aftermath. They never wasted a day and lived their lives at full speed ahead exactly as I have, and found purpose in their non-profit organization which has reached millions worldwide, for which I've been both proud and grateful to have continued to be a part of. And the same sense of spirituality that helped Jordan and his family find comfort in the time of their great loss, is the same sense of spirituality that's helped me to finally overcome my inner fears of cancer once again re-entering my own life, and to finally live my life fearlessly.
"When it's my time to go, if I can look back on my life and feel as though I've accomplished even a fraction of what Jordan and the Jones family have, I think I'll have that same feeling of peace and fulfillment in life. Jordan will forever be my hero for not just inspiring me by how he lived, but by showing us all how to die with grace and dignity, and with the confidence of a life purpose and mission fulfilled.
Jordan will continue to drive me and inspire me for the rest of my life. I'm a big dude, 6'3" tall and I wear size 15 shoes, but Jordan's footprint in this world is immeasurable. I have a lot of work to do. We all do."
Rest in Peace, Sunshine.
Dedicated to Jordan Paul Jones, November 8th, 1993 - June 8th, 2016.
Your life is made up of two dates and a dash. You have no control whatsoever over the two dates, so just make the most of the dash.
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