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How Can I Celebrate 5 Years Cancer Free While Mourning Another Friend?

September 28th, 2016 |
Survivorship, Emotional Support

by stevepake | Survivor: Testicular Cancer    Connect


Literally a week after my 5 year oncology follow-up for testicular cancer I was hopping on a plane to attend the celebration of life service for a young man who had died of his cancer after 9 years. The irony has not been lost on me.

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, 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, and he passed away on June 8th, 2016.

I’ve known periods of dramatic shifts 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 having so much weight being lifted off of my shoulders--yet, feeling so humbled at the same time by the death of my friend, all while prepping a eulogy speech.

So what's different about my life 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. Should 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 permanently evolve in response. There's no going back.

I expected at some point after finishing treatment to regain some of the confidence that I had when I was a young adult without cancer-- some security about my health, supposed longevity, and my future. The cold, hard truth is that I've never regained even a single bit of it at any point in the past five years. I also fully expected to feel closure after just two years, but I never did. When that milestone passed, I found that I was still just as afraid in the months after as I was before.

If it were really true that my odds of a recurrence had basically zeroed out, 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, meaning 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.

What experience have I gained in these five years?

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 gotten through cancer without. 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 than most, but such is the life of a young adult cancer survivor.

How do I live my life going forward?

Here's the answer: I keep living exactly as I've learned to live in the aftermath of cancer. As I wrote in the eulogy speech, Jordan and the Jones family inspired me as a cancer survivor by their sense of spirituality, how they found comfort in the time of their great loss. These sentiments were the same ones that helped me to finally overcome my inner fears of recurrence so that I could finally let go and live my life.

Surviving cancer can be a long journey. To my cancer fighters and survivors working toward their five-year mark: You'll feel a sense of having moved on when you were meant to feel it and when you're truly ready. I'm so grateful to have finally gotten to that point today. It didn't just happen by itself, though -- All of the changes that I've made in my life and all of the ways in which I've evolved past cancer. I've been working hard at it for years, and it's bittersweet to finally feel it.

In writing Jordan's eulogy I discovered the best way to summarize what I've learned from reaching my five-year mark:

    "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.

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Photo courtesy of Everton Vila

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stevepake   
Steve enjoys travel and fine dining, adventures with his family, running, writing, photography, and plenty of time with friends. Steve also blogs about cancer and the survivorship experience at his website, was the Co-Founder and Chair of the first ever Testicular Cancer Summit of 2017, and is a former Testicular Cancer non-profit director.

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