A New Life and a Fresh Start With Faith a Decade After Testicular Cancer

It’s been ages since I’ve done much in the way of writing about my cancer journey here, but it’s time to start writing again.

It had actually been my intention to start writing a “decade survivor” series of articles back in 2020, and then start publishing them in 2021 to celebrate that year. February 14, 2021 was the day I officially became a decade survivor of testicular cancer. Instead, we saw total mayhem in our world, COVID madness throughout 2020, a beyond chaotic presidential election cycle, and the series never got written. It would have been lost in the noise with everything going on in the world, but that’s okay as it would have been premature.

What’s happened with me personally in the past few years has been astonishing. Anything I might have written before would have been meaningless, as the Lord saw fit to evolve me once again. My return to the Lord’s house, and reclaiming the Christianity of my youth after 25 years as a lost sheep adult, has changed everything.

It’s changed my entire outlook on life. It changes everything about how I see my cancer experience now, and how I would have approached so many things so much differently. It’s also changed completely how I see the world today, and how I see myself fitting into it.

Faith Blogs

I would say that the relatively minuscule, and unnecessarily painful baby-step by baby-step slow crawl evolutionary process that I experienced throughout my first decade as a cancer survivor, as detailed on this very website, pales in comparison to the complete rebirth that I’ve experienced since turning my life back to Christ in 2021. When it comes to cancer and all that I went through, I feel like I could re-write nearly my entire website at this point.

What are you looking for in life? Peace? Hope? Security? Belonging? Purpose? Meaning? Confidence? Inspiration? Answers? Knowledge? Truth?

God’s eternal kingdom has all of this, and so much more.

But seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you. (Matthew 6:33, KJV)

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As I peruse back through old blogs that I’ve written, some of them, like this one, just make me shake my head in literal disbelief and laugh at this point.

In that blog, I lamented the perpetual feelings of insecurity that I’d had and perpetual cycles of depression even six years out from my cancer fight.

I HAVE found a way to feel that sense of peace and security again, through my faith in Jesus Christ. The answer was right in front of me all along, if only I had listened. There was no need to suffer through all that I did. Indeed, I suffered due to my lack of faith.

Oh that you had paid attention to my commandments!
Then your peace would have been like a river,
and your righteousness like the waves of the sea; (Isaiah 48:18, ESV)

My faith permeates everything in my life at this point, and I finally feel called once again to write, to share in this personal evolution and all that I’ve learned, and to hopefully help other struggling souls out there find their way, whether cancer survivors or not.

God bless,
Steve Pake

Cancer and Faith Q&A

[Note: After my previous article about how my faith ultimately cured my post-cancer mental health issues for my company’s internal website, I engaged in an extended Q&A about this, which I’m publishing here.]

The blog cover image is of the spires of the Russian Orthodox Church in Nice, France, which we visited recently on our trip to France in April 2023. No connection to the story, just a fascinating place we’ve visited, especially considering that I am part Russian ethnically.

Q: What type of cancer did you survive?  

A: I was diagnosed with Stage 2 Testicular Cancer. Little did I know, it’s the most common form of cancer in men ages 15-35, yet there's still very little public awareness about this type of cancer.

Q: At what age were you diagnosed with the cancer? How was it discovered?  

A: I was diagnosed in 2011 at the age of 33. I had a strange pain in my right groinal area for a few months, but thought one of my children had run into me, or that I had pulled a muscle somehow. The pain never went away and kept getting worse and worse, until one night it became so bad that I couldn’t even sleep. I finally did a thorough testicular self-exam, and discovered a solid mass at the upper rear of my right testicle. My heart literally skipped a beat. I'll never forget that moment.

Q: How was the cancer treated?  

A: My cancer was treated first with an orchiectomy (testicle removal), and then with a combination of four rounds of “EPx4” chemotherapy over 12 weeks total, followed by a highly invasive surgery called an RPLND. From diagnosis to being discharged from my final surgery, was 5 months in total.  

Q: How did this season in your life impact you (your outlook, job/school, relationships, physically, etc.)? 

A: Testicular cancer is an aggressive, but fortunately highly curable form of cancer. The flip side is that the treatments for it are also quite aggressive, and can really leave a mark on you. The chemotherapy made me feel like my body was getting ready to pack up and die, and there was a complication during my RPLND surgery in which I nearly did die, all of which fueled downstream mental health issues. I had recurring nightmares about all of this for years, and struggled with anxiety, depression, and PTSD, including a few suicidal episodes where it had all just become too much.

Everything changes after cancer. There’s never a good time to get cancer, but especially as a young adult and with young children at home, it can be especially traumatic. We have our whole lives in front of us and young children depending on us, when suddenly we feel as though we’re at death’s door. Cancer really puts into perspective just how fragile life is and what matters and what doesn’t, but is a terrible thing to have hanging over your head at such a young age. You truly have to evolve at all levels to beat cancer not just physically, but mentally and spiritually as well.

Q: Besides your faith, what other help did you receive? For example, did/do you see a therapist? Have you changed your exercise or eating habits? Did/are you taking medicine? 

A: It's a long story, but I realized early on that my mental health challenges were more spiritual in nature and thus needed to be resolved spiritually, and that anxiety and/or antidepressant drugs just weren't the correct path for me. I sought out cancer therapists which I knew can be amazing after the fact, but a 4-6 week wait for an initial visit at a time when I needed urgent help wasn't going to work, either. 

The cancer community and especially the close-knit young adult cancer communities online quickly became a huge source of support for me. No one fights alone, and there I found plenty of others in similarly distressed states. It was easy to find mentorship, guidance, and inspiration from those that were further along in their cancer survivorship journeys.

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Writing and running became my main outlets, all inspired by other cancer survivors. Writing, initially in the form of private journaling, helped me start to unravel what I was feeling and why. This really took off once I made my writing public, as there were virtually zero young adult male cancer survivors writing about the challenges of cancer survivorship at the time, and it was a perspective that people really needed to hear. Many thousands of people across the world have benefited from my writing, which was cross-posted and shared at Livestrong, IHadCancer, StupidCancer, the Cancer Knowledge Network, CURE Magazine, The Mighty, and more.  

Running was also fantastic, and not only helped rehabilitate my body physically, but helped me manage my PTSD and get it under initial control as well. There's something very primal and satisfying about running outside, not in a gym and not on a treadmill, with wind on your face and scenery passing you by, when you're in such a distressed state. It gave all of this free-wheeling inner anxiety a place to go, and it also helped get my post-cancer chronic pain issues under control as well. I'll never win any awards for my running like I have for writing, but running was a win-win for both mind and body.

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Q: Why did you turn away from religion as an adult?

A: Without getting into the specific church or denomination, I'll just say that I was never able to form a solid connection to God at the church of my youth, and that there's no shortage of adults of all ages that have had similar experiences. The lead pastor at my current church once answered in a Q&A session of the type of church I attended as a youth, that any connection to God formed was more likely to be in spite of that type of church rather than because of it, which was quite unfortunate for myself and many others, and a huge missed opportunity.

As a young adult, I also had far too much faith in the world and man's abilities. I was never an atheist but rather agnostic, and just didn't think I needed God or religion in my life. The decades that have passed, the challenges I've faced, and what I’ve seen of the world have completely humbled me, and I now see just how naïve and foolish I had been in so many ways.

Q: What other life occurrences besides cancer helped bring you back to God?

A: When I finally sat down to meditate on this early one morning and came up with the answers, I closed my office door at home even though it was just me and the dogs that day, grabbed a large box of tissues, and wept the entire rest of the morning. It was a good exercise and cathartic in a way to release a bit of pain that had been kept locked away for so long, but also quite the trip down memory lane.

It was so many things over such a long time, but was ultimately the completely unchecked and unmasked evil running rampant through the world starting in 2020 that brought me back to God. The illusion finally broke for me as to the true nature of this world that we live in. The Lord gave me eyes to see, and I cannot unsee what I’ve been shown. There should be no question about who and what is really running this world, and it brought me straight back to Christ. 

But complete spiritual demoralization had already occurred even prior to this. The 2010’s had been quite turbulent for my family and I, with a seemingly endless string of toxic and self-destructive people wreaking havoc in all areas of our lives prior to and still long after my cancer fight, often leaving only ourselves to clean up the messes and to deal with the consequences. It all became completely exhausting and intolerable to the point of becoming a bit of a recluse in the latter years of the decade, and then the events of 2020 and beyond started unfolding. I just wanted to be left alone, but that’s not how the world works, and I ultimately tired of feeling so alone in this world spiritually. 

Whilst in prayer and a deep state of despair one day in 2021, I felt a warm breathe and whisper from God on my shoulder, and He led me to my current church where I’ve found the connection to God, hope, guidance, fellowship, and so much more that I’ve long needed. 

Q: What state/region is your church located? 

A: I attend Frederick Christian Fellowship (FCF) Church in Frederick, MD. It's a non-denominational Christ-centered, Bible-believing church. You can read more about the church itself here, and my personal story of returning to church after 25 years here. It’s a truly amazing church that transformed me the very first time I attended services. The lead pastor gave a nearly hour long sermon that day that explained nearly everything I had been in such a deep state of distress about above, as though the message was for me personally. My only explanation is that God wanted me in that church, on that day, and to hear that message for a reason. If I had a church anything like this during my younger years, I never would have turned away from God and the church.

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Q: At what age were you baptized as an adult?  

A: I was baptized for the second time in my life last year at 44 years old. I was originally baptized as an infant, but baptisms are meant to be an outer expression of an inner transformation towards God, and a conscious choice one makes. This isn't something you can develop as an infant, and so infant baptisms aren’t performed at my church. Second adult baptisms such as my own are actually quite common!  

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Photo by Pat Kauffman

Q: What type of changes have you made in your life since you regained your faith?  

A: By the grace of God, I continue to be transformed by my faith for the better. I pray daily, keep reading and studying the Bible often, attend church groups and social functions when possible, and don't allow myself to keep worrying about too many things to list, including cancer. There's no question I've had that hasn't been answered in the Bible, and I've learned to put all of my faith and trust in the Lord and in His eternal plan. As my faith grows, the last of my mental health challenges fades away, instead replaced with great hope and confidence for our eternal future in Christ! 

"Fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand." ‒ Isaiah 41:10

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How Rekindling My Faith Cured My Mental Health Issues

[Note: My company asked for 400 word submissions for Mental Health Awareness Month in May for their internal website and blog, and so I wrote one.]

As a young adult cancer survivor, I’m no stranger to mental health issues. My cancer fight a decade ago was brutal and left numerous physical scars, but the mental ones went far deeper and took many years to overcome. All of the uncertainty after cancer fueled endless cycles of anxiety, depression, and even PTSD. Cancer had long left my body, but the mental fight within raged on silently for years. 

Life was challenging but spares no one, and eventually other tragedies and resulting traumas found their way into my life, some of which almost made my cancer fight seem easy. Moreover, the sorry state of our depraved world can be completely demoralizing to anyone, with all of its evils and injustices, endless wars, and unrighteousness of all kinds. Through all that I’ve faced, I’d considered taking my own life on more than one occasion, thinking it might be easier. Starting to redevelop my faith is what finally put a stop to it.

Born and raised a Christian, I had turned away from religion for the entirety of my adult life. It was actually current and former [Company] employees who saw my struggles through the years, that planted the seeds within me that helped rekindle my faith in God. A current colleague gifted me a beautiful set of Bibles a few years ago which I read faithfully, and soon after started attending weekly services at the church a previous colleague had long ago invited me to. I was baptized for the second time in my life the year after, having commit myself to leaving the foolish ways of my old life behind, and putting all my faith and trust in the Lord. These small gestures changed my life.

Peace in my soul has replaced endless worrying, understanding has replaced so much confusion and angst, and hope and joy for God’s eternal Kingdom has replaced the utter dread and hopelessness I’d felt for our earthly world and existence. 

“But first seek the kingdom of God and his righteousness, and all these things will be added to you.” Matthew 6:33

Never underestimate the power of faith to heal from mental health related matters. I discounted faith and religion for many years only to continue to suffer, but now offer myself as living proof of its truth and power. All that I had been seeking, I have found through my faith. 

StevePake.com

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How Returning To Church For the First Time in 25 Years Changed My Life

I was raised in the Catholic church, but quickly fell away from the church after leaving home for college in 1996, and have never attended church as an adult. Despite having been baptized and confirmed and doing all of the things a good young Catholic boy ought to have done (except becoming an altar boy, which I refused), I never established a firm connection with either God or the church during my childhood, but have still largely lived a very moral and Christian life.

This is the story of my return to Faith, the Church, and our Lord and Savior Jesus Christ.

Blackpilled

I think we all reach a point in our lives when all of our accumulated traumas, tragedies, disasters, failures, disappointments, betrayals, and back-stabbings all seemingly reach a critical mass that serves to completely demoralize and black pill us. Being in your 40’s is certainly more than enough time for that. I had someone threatening to kill my entire family, kids included, for the better part of a decade. My own body betrayed me in the worst possible way and tried to kill itself, when I was diagnosed with an aggressive form of cancer eleven years ago at only 33 years old. There were times I wanted to do it myself in the midst of PTSD and other mental health issues that developed after my brutal fight against cancer, thinking it might just be easier that way. Terrible tragedies have struck elsewhere in our families that have been unfathomable. Numerous people that I had cared about and thought were friends attempted to sabotage me both personally and professionally. I even had years of non-profit work that was benefiting thousands of fellow cancer fighters and survivors nonsensically destroyed, all done out of the goodness of my heart, for no reason whatsoever other than spite or jealousy, or who knows what. The end result of going above and beyond for the people that my wife and I have loved and cared about in this world has always been the same – daggers in our backs and spit in our faces. The world has truly been a thankless place, and it’s all taken a terrible toll on us spiritually.

I had come of age and went through most all of my 20’s as a perpetual optimist and upbeat person. There hadn’t been a single depressive ‘bone’ in my body, but truthfully I’d been on the start of a slow spiritual slide to oblivion for years throughout most of my 30’s, long before covid ever happened and the world collectively went insane. Cancer rocked my world, but it became just the tip of the proverbial iceberg, or more accurately just one of many icebergs that found their way into our lives. The sum of all that my family and I have been through over the past 10-15 years has been completely exhausting mentally, physically, and spiritually, to the point that I exited 2019 in my early-40’s at a spiritual zero, completely deflated and demoralized, and just had nothing left to give the world anymore. I wanted nothing more than a relatively peaceful, quiet, and uneventful 2020 and entire next decade, and I need not elaborate to anyone reading this blog on anything that’s happened since then. What we’ve all been witness to thus far in the 2020’s has been absolutely astonishing, incomprehensible, and downright evil and demonic in so many ways, and on top of so much personal pain from the past. But all that’s been happening in the world hasn’t even been the worst.

Fighting cancer in 2011, not the first and not the last of many terrifying turns in our lives. Very recently, I worried this is what my life would become again, possibly without a positive outcome.

My final “black pilling” came in October of 2021 when I was having the most serious second cancer scare that I’d ever had in all of my years as a cancer survivor. Unlike so many previous recurrence or second cancer scares that are mostly just head games, this time there was a real physical mass that I felt that was incredibly disconcerting, and actually had to book a scan for the first time in many years to get it checked out. I wondered if this was it for me finally, as I was on hold for 3 weeks to get it checked out.

The sheer insanity of the rest of the world tends to fade away when you’re worried if you’ll even be around in another month or not. And that’s when those old demons found their way back into my head, and I once again wondered if it would be easier to just end it all myself.

The Warm Hand of God and the Whisper In My Ear

And so there I sat in my basement alone late one night in November of 2021 after everyone else in the house had gone to bed, just allowing myself some private time to grieve ever so slightly a tiny fraction of all of the pain I had been keeping locked inside for so long. Tears began falling for my country, for all that humanity has had to face, and for all of the previously unthinkable levels of evil and wickedness that we’ve been witness to, while wondering how it could even be so? Tears fell for my children, horrified as a parent of the world they’re soon going to inherit, and wondering what I had done to fail them? And more tears fell as a cancer survivor, once again fearing for my life as my upcoming scan loomed, terrified that I wouldn’t even be around any more to help guide them.

My worst fears as a cancer fighter and survivor have never really been about death or dying, but rather leaving my children alone in this world without their father to help guide them and protect them. Children need their fathers, and don’t ever let anyone tell you otherwise.

I did something I had never done before, and cried aloud to Jesus to save me from all that had been tormenting me inside, and that’s when it happened. I was alone in my cold basement, but all of a sudden felt warmth on my right shoulder as if a hand was reaching down to touch me, and a whisper in my ear that said, “it will be okay.” I was completely startled by this, and in that instant every last bit of my anxiety left me, replaced with an incredible sense of peace and calm. It was surreal and entirely external. In years past of fighting anxiety attacks, depression, and PTSD episodes mostly from my cancer aftermath that could last hours or even days, not once did I ever have anything stop inner pain dead in its tracks like this. I’m not even going to pretend to know whether what I experienced in that moment was truly the Father, the Son, the Holy Spirit reaching into my mind, or an angel. All I know is that I cried aloud to Jesus for help, and actually heard and felt an answer.

In that moment there was complete peace in my soul, because I knew I wasn’t alone. I’ll never forget this moment, and that’s when I knew I had to get back to church.

It All Started With The Bible

Truth be told, I had been feeling closer and more connected to God than I ever had in my life throughout 2021 thanks to a friend that had gifted me a beautiful set of Bibles to read, after we had been talking about all that had been going on in the world. My friend served as yet another strong witness to Christ for me. I admired his confidence in God and in his beliefs, and knew this was what I needed. I felt the desire to truly learn the word for the first time in my life with all of my heart and soul. Never has it been more clear to me that evil doesn’t just exist in the world, it rules it. If Satan exists, then God absolutely exists also, and I needed to learn and know His word.

I never considered myself an atheist, but rather agnostic throughout much of my adult life, but now felt called to God. The Bible set my friend gifted me were absolutely gorgeous and just served as further encouragement to read the word, and did. I soon purchased an entire stack of Bibles for multiple rooms in my house, one for my truck, one for my office, and even a John MacArthur study Bible, because you quickly learn that the Bible isn’t something you could ever come close to fully comprehending on your own, and especially not as a beginner and first time reader of the Bible.

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My Bible collection grew rather quickly. This isn’t all of them.

I had been given a Bible to read in Catholic Sunday school as a child, but where do you even begin? I was probably barely 10, but just didn’t have the guidance needed to even know. Perhaps I wasn’t ready for it all back then, but I was now, after all that life had put my family and I through.

What I’ve read in the Bible has been astonishing. The books of John in the New Testament in particular blew my mind. Those and so many of the books of Paul and even many Old Testament books all felt like they could have been written about today despite being thousands of years old. The Bible is truly timeless. I’ve learned so much about the history of humanity, how God works, the cycles that humanity goes through, the true nature of the world that we live in, and so much more. I know what the resurrection of Christ truly means, and that the end has already been written. I don’t feel like a single minute spent reading the Bible has ever been wasted. Everything that I’ve ever worried about or struggled with has all been answered in the Bible, and so much more that I couldn’t possibly have thought of on my own. It’s truly the greatest story ever told, the greatest history book ever written, and a wealth of knowledge for all time. The Bible is our owner’s manual for life, a blessing from our creator Himself.

Going To Church For The First Time in 25 Years

Frederick Christian Fellowship Church, in Frederick, MD

Sunday, November 14th, 2021 was the day, my first time going to church in 25 years.

I had been invited by two different friends to FCF Church (Frederick Christian Fellowship) in Frederick, MD during dark times in years past, but had always politely declined. “Religion wasn’t what I needed,” and I didn’t think the church could possibly have anything to offer me. Despite it being a 35 minute drive away with many dozens of closer churches, I felt called to this church somehow. I knew nothing of what the church was, didn’t know who its Pastors were, what denomination it was, had barely even seen its website, hadn’t watched a single livestream, and didn’t know it had a YouTube channel either. FCF Church was a complete blank slate to me, but somehow I knew I had to be there, and that this was the day.

Spiritual Defibrillation

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Services at FCF Church are held in a large auditorium in the main building that seats around a thousand. A full band led by Associate Pastor Pete Gillott opened the service with a song called “The Church Is Alive” by River Valley Worship, and it most certainly felt alive. I had never heard such amazing Christian worship music in my entire life, and had no clue that such music even existed, none whatsoever! It was amazing and I loved it, and the atmosphere felt electric. I had never felt so much positive and uplifting energy, and I could feel it flowing right through my soul, and had tears welling up in my eyes as the band played several more songs. It was just beautiful, and unlike anything I had ever seen, felt, and heard. Imagine being at rock bottom spiritually and feeling completely dejected, but in an instant being cranked up to 11. That’s what it felt like, literally a spiritual defibrillation and being brought back to life.

Pastor Pete himself will joke that he’s not much of a singer (could have fooled me!) but that he can sing to lead a congregation. His wife, Jess, however, is truly gifted with an absolutely astonishing voice. The FCF band often sings music from Elevation Worship, Bethel Music, Hillsong Worship, James River, Phil Wickham, and more. My jaw hits the floor at every service that I attend just from the musical talent alone from Pastor Pete, his wife Jess, and the entire FCF band. When you have that much talent and energy on display, it can jolt one awake spiritually in a way that more traditional and softly sung worship hymns never could.

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Pastor Pete describes the FCF music as “authentic love that’s freely expressed,” but for myself it’s even better and far more powerful than that. I know different people need different things, and have different expectations about what a church is and should be, but I need that energy. Everything is very tasteful, and not overdone or ‘rock concerty’ at all.

FCF Church had me at hello and in tears just from the opening music alone, and we hadn’t even gotten to the sermon yet.

The Sermon That Changed My Life

I don’t know how to explain how it is that I went to church for the first time in 25 years in such a deep state of distress about life and the world and everything that we’ve been facing, and wondering how such evil and wickedness could possibly even be allowed to the point that I’d had suicidal thoughts, and have that be the exact topic of the sermon.

I don’t think it’s possible for me to overstate how powerful FCF’s founder and lead Pastor Randy Goldenberg’s sermon was for me that day. This was the second of Pastor Randy’s sermons on “Earthquake Shakings” titled “What Are God’s Methods,” in which he discusses life changing events that we might face, while pulling various parts of scripture together that reference earthquakes.

The sermon centered around the Old Testament story of the prophet Elijah fleeing from Jezebel, and running hundreds of miles into the wilderness in 1 Kings 18-19. I had actually just read this passage and thought it interesting, but couldn’t bring it to life to truly comprehend it like Pastor Randy was about to. In the passage, Elijah had just killed all 450 of the Baal worshippers after a fiery display from the Lord. Thinking that such a display would turn Jezebel back to the Lord, instead she was more emboldened than ever in worshipping Baal, and vowed to kill Elijah the very next day. Fearing for his life, Elijah fled hundreds of miles into the wilderness.

The two key verses of the sermon were the following.

1 Kings 19:4
[4] But he himself went a day’s journey into the wilderness and came and sat down under a broom tree. And he asked that he might die, saying, “It is enough; now, O LORD, take away my life, for I am no better than my fathers.” (ESV)

1 Kings 19:11–12
[11] And he said, “Go out and stand on the mount before the LORD.” And behold, the LORD passed by, and a great and strong wind tore the mountains and broke in pieces the rocks before the LORD, but the LORD was not in the wind. And after the wind an earthquake, but the LORD was not in the earthquake. [12] And after the earthquake a fire, but the LORD was not in the fire. And after the fire the sound of a low whisper. (ESV)

What 1 Kings 19:4 illustrates is that even the prophet Elijah, with all of the power and influence that he was given, became so discouraged and depressed that he ran hundreds of miles in fear and wished for his life to end. Pastor Randy was very delicate in approaching the topic of someone being suicidal, and was aware that there could be someone in the congregation that had recently been in such a state. As it turns out that caution was well justified, as someone approached Randy after the first service which I attended, who apparently shared something private with Randy to that effect. Randy alluded to this in the second service, but there were more that day. I too had been in that state once again, even if just briefly.

The core point of the sermon was that God is not about massive displays of power. Many Christians and non-Christians alike all wonder why if God is all knowing and powerful, then how could He possibly allow such evil and wickedness in our world and just put a stop to it? As Randy explained, God knows that the human heart cannot be penetrated through fear, force, and bribery. God is trying to get Elijah to understand what God’s methods are to pull him out of this suicidal depression. God is about reaching into human hearts that can be reached, and not about forcing people to conform.

God was not in the wind that was so powerful that it was ripping mountains apart. He was not in the earthquake that was tearing the earth. Nor was he in the fire. He was the whisper in Elijah’s ear, teaching Elijah and all of us that God is often in the background working quietly, even when it’s not understood.

As Randy continued, he explained that this is an evil time that we live in, which started in heaven in eternity past, when Lucifer descended out of heaven and took a third of the angels in heaven with him. Evil was present in the garden of Eden when Eve was deceived. It was present when Jesus was nailed to a cross and killed. Paul served the Lord faithfully for 32 years, and was imprisoned, beaten, tortured, even shipwrecked, and eventually beheaded. Pastor Randy asked, is that not evil? And evil is just as present today, as it has always been, that so many of us see and are distressed by.

Randy explained repeatedly that evil is being allowed for a little while, until it’s abolished forever when Jesus returns in Revelation, and the new heaven and new earth are created free of evil. His methodology is not to intervene now and stop evil.

Acts 17:31
[31] because he has fixed a day on which he will judge the world in righteousness by a man whom he has appointed; and of this he has given assurance to all by raising him from the dead.” (ESV)

There’s a fixed day in which the Lord will return and judge this world. As Randy continued, when that day comes, evil will be destroyed for a thousand years in Revelation 20. Evil will then be allowed again briefly, before being destroyed forever in the new heaven and new earth in Revelation 21 and 22. As Randy put it, God is building skyscrapers and not sand castles, and that takes a little longer. God is building his eternal family, and wants those that will seek Him and stay close to Him, so close that He can whisper to us.

“Godpilled” And Reborn

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FCF Church founder and lead Pastor, Randy Goldenberg

As Pastor Randy concluded and went to prayer, I was awestruck at how everything made complete sense, and in that moment I felt the peace in my soul that I had longed to feel for so long in the midst of this fallen world that we’ve found ourselves in.

I highly encourage you to listen to the full sermon linked above, as my brief summation here cannot possibly replace the full extent of Randy’s incredible hour long message.

Randy stated in the second service of the day that he felt like something was happening that day, and that he’d felt it in both services. Perhaps I was a part of that energy, and that it was God’s “whisper” to me that brought me into church that day for the first time. God clearly meant for me to hear this sermon, by this Pastor, in this church, and on that day, because it completely transformed me. The whole experience from start to finish spoke directly to what was in my soul. There’s no other possible explanation to me than the hand of God at work. Surely I was reborn on that day, and exited church for the first time in 25 years a changed man and a born again believer in Christ.

I didn’t think that Jesus was the answer or that His word had anything to offer me, when everything that I’ve ever wondered about or struggled with is explained in the Bible and His word. I didn’t think the church had anything to offer me, when in fact its offered me the connection to God and His followers that are my brothers and family that I’ve always needed, but have been without for all of my adult life. I didn’t think it was possible for a Pastor to interpret the word and pull so many parts of scripture together and bring them to life in such a relatable way, and completely relevant to the times, to help us all pull through this evil age of spiritual warfare that we’ve found ourselves in. Pastor Randy has had me in tears multiple times through his sermons in the short time that I’ve been attending FCF Church now, as though he knew every bit of my pain and so much of what I’d been feeling personally, while also teaching us how to patiently endure and overcome it all, while still living a Godly life.

The short and monotonous 15 minutes sermons in the Catholic church that I attended as a child never worked for me. Pastor Randy’s sermons are almost always over 50 minutes, and many are unforgettable with the way he brings so much Godly wisdom to life from the word, and the knack he has for approaching and talking about extremely difficult topics. Pastor Randy is truly blessed by God to bring the word alive into our hearts and souls like he can, and I always feel like I could keep listening all day.

I had never even heard of Pastor Randy before that day, but the man has my number. I didn’t think that was possible for anybody, let alone a priest that I hadn’t known previously. His sermon that day was exactly what I needed to hear, and exactly when I needed to hear it. It rescued me from something awful, and surely I was transformed and reborn on that day.

It’s Never Too Late To Find God and the Church

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Photo Credit: Pete Gillott / Kaché Woods, FCF Church at the FCF Men’s Breakfast, Saturday February 26th. You can find me center left kneeling in the front row.

Whether you’re a current or former “lost sheep” Christian like myself or even a non-Christian, it’s never too late to find God and to return to the church after many years, or even for the first time. Never for a moment should you doubt how big and profound a difference the right church, the right congregation, the right Pastor, and complete trust and faith in our Lord and savior Jesus Christ can make in your life. I’m living proof of that right now as a changed man, and now in the midst of the greatest of transformation in my lifetime.

If you’re feeling lost or hopeless in this fallen world as I had been, I could not encourage you more strongly to seek God and the church. Yes, there are unfortunately bad and woke “churches of the world” out there that you’ll want to avoid, that have been subverted and don’t actually preach the word of God. I can assure you, FCF Church is absolutely not such a church. We’re blessed that Pastor Randy has the courage to speak the hard Biblical truths, and to speak out forcefully against the contentious issues of our time. You might have to church shop a bit, or possibly even drive out of your area as I do. Ask around and ask friends that you trust, but don’t give up hope. It’s worth the effort to find a good church not just to receive the word and the spiritual backing and empowerment that we all need in this demonic world that we live in, but to find and build fellowship with other like minded and God fearing Christians.

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If you don’t even know where to begin, by all means tune into FCF Church’s livestreams to get started which have very high production quality, or attend if you’re in the area. But half the purpose of the church is to build Christian fellowship, and so I highly encourage you to find an excellent local church.

If you’re within an hour of Frederick, MD (it’s worth it), click the button below to get in touch.

I felt absolutely hopeless in finding a good church living where I do, in the next county south and a bit too close to the swamp. I’ve felt so alienated for years in my area, like a sojourner living in a strange land, but as it turns out I didn’t have to look for a church at all. God led me straight to where I needed to be at FCF Church, and I feel very blessed and fortunate to have found exactly what I needed, exactly when I needed it, and the hand of God that I felt working quietly throughout, exactly like the whispering described in Randy’s sermon.

Correcting My Biggest Mistake In Life

Pastor Randy shared this verse in the closing of his sermon that day, which also spoke volumes to me.

Isaiah 48:17–18
[17] Thus says the LORD, your Redeemer, the Holy One of Israel: “I am the LORD your God, who teaches you to profit, who leads you in the way you should go. [18] Oh that you had paid attention to my commandments! Then your peace would have been like a river, and your righteousness like the waves of the sea; (ESV)

God knows what’s best for all of us. He is the light and the way and has a plan for all, and that couldn’t be more clear to me now. I deeply regret ever leaving the church, and having been away for 25 years. It was a terrible mistake, and now one of my few regrets in life. There’s so much I’ve missed, and so many things in life that would have been so much easier to bear had I never left, or sought Jesus and the church so much sooner.

But it’s never too late to put your faith in Christ. This was the day I put my full faith in Christ, and that He won my trust. The more I learn to lean on God and the word, the more my worries of the world dissipate, just as had been shown to me so many times in the past. All of my anxiety and depression has been fading because now I know the end of this story, and that He has already won.

It’s my hope that hearing my testimony might help others find their own faith and trust in Christ as well, and the inner peace it will bring.

You can be saved too.

And after all that, my cancer scan turned out fine, just like I was told it would be. What I’d felt was a lymphocele that had formed, which is actually very easily explained given my complicated medical history, and not a cause for concern. Praise God!

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The full livestream from the November 14th 2nd service at FCF Church. I attended the first, but Pastor Randy had some interesting additional comments in this one.

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Special Thanks

I wanted to take a moment to thank all of my friends that led me back to Christ.

To Gab.com Founder and CEO, Andrew Torba for your bold and unapologetically Christian leadership, which planted the seed when I joined the Gab platform back in 2018. Weak men create hard times. Torba is tip of the spear among the new generation of strong Christian men that will help lead us back to good times. And can you name another tech CEO that reposts and offers words of encouragement to people like myself going back to church for the first time? Thank you.

To my friend Neil Sederburg, for our campsite fireside chats throughout 2021, for being such a strong witness to Christ for me, and for the beautiful set of Bibles he gifted me which further inspired me to read the word. I could not have asked for a better friend or a more beautiful gift in such a dark time. I will never forget this gesture and will cherish these gifts forever.

To my friend Steve Barr, fellow engineer and photographer friend, for our friendship and the church invites over the years, and for always thinking of me.

To my friend Claudia Ritchey, someone who recognized who and what I was and what I needed long before I did, and that I would have trusted my life to. If only I had listened and found FCF Church nearly 10 years earlier when you had invited me, so many things I had been facing in life would have been so much easier. God has a plan for everyone!

To Pastor Pete Gillott, for being so approachable and taking the time to speak with me about my return to church after so long, about FCF, and for your prayer that God might work through me on this project to help other lost souls and lost Christians such as myself find their way back to church and the Lord. It’s not possible for Pastors to know everyone in their churches, especially larger congregations like FCF, but I appreciate you getting to know me and making the effort. Mission Complete, but also just the beginning!

Lastly, to everyone who makes FCF Church happen, from founder and lead Pastor Randy Goldenberg, Pastor Kim Kesecker, Pastor Pete all of whose sermons are excellent. To Matt Hull who leads the men’s message group that I’ve been attending, and to so many others that run many other church groups, down to every volunteer, staff, the production team, and especially the FCF band, thank you. God is truly in this house, and I’ve felt so welcomed and loved here. It‘s a great blessing to finally be a part of a church, and to have a church family for the first time in my life. This is what I’ve always needed.

My Decade Long Journey as a Testicular Cancer Survivor

Note: I originally wrote this blog for my friend, Justin Birkbichler’s, ABallsySenseofTumor website back in March 2020 as one of his Band of Ballers feature. You can see it below.

Steve Pake Shares His Story to Encourage Other Men in Their Testicular Cancer Fight – Before, During, and After

I had intended to cross-post it here at my own website after a month or so, but with COVID-19 going full swing and a whole lot of disruption in ours and everyone else’s lives, I just burned out and never got around to it. It’s been a year since I’ve done anything on my website, so here it finally is with a few little updates and tweaks to get it up to date! I hope you enjoy this as the first of my 10 years after cancer series of blogs.

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This year I’m 10 years out from my testicular cancer fight. Back when I was 33, I had some pain in “Righty” for a few months, but I just assumed that one of my toddlers at the time (who are now 12 and 14!) had run into me. Yet the pain kept getting worse and worse. A few more superficial checks, including by my wife who is a doctor, didn’t find anything. 

Finally, in the middle of the night before Valentine’s Day in 2011 (of all the days), the pain was so bad that I couldn’t even sleep anymore. It was then that I finally copped a total and complete “what the hell is going on here feel” that I finally found it – a solid mass in the upper rear of my right testicle, exactly where it would have been missed via the superficial checks I had done before. 

I Didn’t Open Up Right Away, Though

However, I wasn’t compelled to start sharing my full story publicly until 3 years after my diagnosis, and long after treatments and surgeries had ended. I had a CaringBridge site, posted updates on the TC-Cancer.com Forum, and friends and family knew what I was going through on social media as well. But that was all just the mechanics of fighting the cancer itself. Going through chemotherapy and highly invasive surgeries were things that people could understand, but the true “battle” didn’t begin until long after all of this. Fighting cancer is the “easy” part.

I remember being in my oncologist’s office for a follow-up visit in 2012, the year after my cancer fight, and was reading an article in an oncology magazine about how a lot of cancer survivors can experience depression and other mental health issues. I thought of how fortunate I was to be doing so well and that I hadn’t experienced any of that, but the truth was, I still hadn’t even realized what had hit me yet. 

I think that especially when you’re a father, and when you have two young children at home that you had only just brought into this world, that it adds another dimension to the cancer fight and to survivorship and what’s at stake. 

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Fighting For More Than Yourself

As a young adult cancer fighter with a family, you’re not just fighting for yourself and your own future, but for your family’s and your children’s future as well. Going into cancer treatments, I cast all of my fears and emotions aside without realizing that’s what I was doing, and became a warrior hell bent on eradicating every last cancer cell in my body no matter what it took, because my family and my children needed me. 

After the shock of my diagnosis wore off, I hardly blinked through 4 rounds of chemotherapy and the RPLND surgery, and always thought it was strange that I wasn’t the least bit afraid of that surgery at all. I was actually terrified inside, but just didn’t realize it until long after everything was over. 

My Long and Slow Slide To Rock Bottom

My first year after cancer, I was still actually in a warrior mindset not fighting against cancer, but rather with a body that was battered and heavily listing from multiple secondary health issues as a result of treatments. I also had to endure terrible neuropathy pain and chronic fatigue that had developed from the chemotherapy, and struggled just to have enough energy to make it through a day. It wasn’t easy, but all things considered I thought I was doing well and just happy to be alive, until I came off the rails. 

Around two years after my testicular cancer diagnosis was when friends I had made in the cancer community started to leave this world. This is cancer. Not everybody is going to make it, and I watched in complete horror as several friends passed, and then seeing their families torn apart with grief. 

I had a terrible recurrence scare myself right as this was happening, and thought for sure that my cancer had returned and that I was next. 

The Proverbial Dam Within Me Bursts

I had unknowingly been holding so much inside of me that started pouring out. I was suddenly terrified of the brutal chemotherapy that I had already been through and of having to go through that again, and was terrified of the RPLND surgery that I’d already had 18 months prior and of having to go through that again as well. I was terrified of my future and of not having one, of seeing my family ripped apart by cancer as it was doing to my friends, and I just lost control and completely came off the tracks like I never had before in my life. 

Every day in January of 2013, nearly two full years after my cancer diagnosis, I was in tears for hours and just overwhelmed with every bit of pain, fear, and grief that had been locked inside of me for so long and that I had never processed. I couldn’t sleep and had terrible nightmares often. PTSD was ravaging my mind, and every dark moment from my treatments and surgeries replayed inside of my head like the trailer for some horror flick that I didn’t know how to stop watching. Mentally, it felt like I was trapped inside of a burning house, with no windows and no escape.

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What I was feeling inside was so bad that I became suicidal as a means to an end, but my wife saved me. She got inside of my head to fight along with me in the way that only a soulmate could, and beat away these mental demons that had been ravaging me. It was from this point forward in the first months of 2013, two years after my cancer diagnosis, that I began my long crawl back up from absolute rock bottom as a young adult cancer survivor. 

The Mission Of My Writing

Most people in the testicular cancer community came to know me from all of the blogs and longer form essays that I’ve written about the challenges of life after testicular cancer and as a young adult cancer survivor. There were almost no young adult male cancer bloggers out there that I could find that were open about any of the mental health issues I had faced such as anxiety, depression, PTSD, and yes, even suicidal thoughts. And so I became one of the first young adult male cancer survivors to write about these topics. 

My writing started out in those dark days of early 2013 as private journaling, just trying to find my way again. A cancer mentor had been writing for a cancer association, so I figured I would give it a try as a form of therapy, and it just stuck and the words kept on flowing. 

By 2014, I was finally able to start approaching cancer survivorship from a position of strength, and published my first public cancer essay on Facebook to a viral response in April of 2014, after being encouraged by a friend to do so. 

My Commitment to Writing Expands

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Steve and Dr. Einhorn, another Band of Ballers alum

Over the next few years I would publish dozens of blogs about testicular cancer and young adult cancer survivorship as I took people in the community along with me on my healing journey and advocacy mission. 

Per the encouragement of many friends who told me my writing applied to far more than just the small testicular cancer corner of the Internet and social media, I expanded my reach to even larger organizations such as the huge community of IHadCancer.com and others, and also established my own website at StevePake.com as a repository for all of my writing, which was awarded as IHadCancer’s Top Cancer Blog of 2016. 

I can’t even begin to tell you what it feels like to have an article really hit home, and see it reach over a thousand shares on social media with literally hundreds if not thousands of comments about how much something I had written helped others. Across all of the platforms my writing has been published on, I’ve managed to reach hundreds of thousands if not millions of people across the world. My writing has also saved lives, as it has helped to pull people out of the same suicidal downward spirals of despair that I had found myself in. That’s a very powerful life experience to have, and one that I’ll be forever proud of.

About Mental Health And What You Can Do

The best thing you can do, especially a male cancer survivor, is to just be open about what you feel, and to never be ashamed of anything. Just because we’re men and have different anatomy between our legs than women doesn’t mean that we don’t have the same human feelings. As someone that’s written to an audience of hundreds of thousands, believe me when I say that gender, race, class, caste, whether we’re red, blue, or purple, or any other so-called differences we can think up, all matters not. We all feel the same “human” things after cancer, and have the same fears and worries.

I spent several weeks last year (in 2020) trying to help an extremely poor and disadvantaged young black man from one of the poorest countries in Africa find help for what was most likely testicular cancer. Based on the demographics of the country he was from, he was probably Muslim as well, and could not have been more different from me. You know what? He had the same exact fears, worries, and concerns as any of the thousands of other people that I’d interacted with over the years. We’re far more alike as human beings than most could possibly imagine, once you strip all of these social constructs away and just look at the core of our humanity. We’re all so much the same inside. 

Men and Cancer

What men feel after cancer is no different from anybody else, but typically just don’t know how to handle them, or are ashamed of what they feel. Everybody else holds all of their pain inside as well, and so we feel alone as a result and like we’re the only ones suffering, when that couldn’t be further from the truth.

Men are just socially conditioned to hold it all inside, to “man up” and “be strong” and to never show any fear or pain. But that’s just not really how it works, and the male suicide rate is 4 times that of women. Men going through especially tough times in their lives, whether cancer or not, are far more prone to suicide. I would know, I’ve talked to more than a few men over the years that have contemplated, but never any women who have been suicidal when I have more female readers!

Don’t let yourselves get to this point. Just be open about what you feel, and never be ashamed. We’re all human, after all.

A Decade of Cancer Survivorship Experience In One Section

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Steve and Justin Birckbichler, and his majestic beard of 2019. (You’ll note we are not on a tropical vacation here!)

After a full decade as a testicular cancer survivor, life has largely moved on for me, and has also made a lot of other big asks and demands of my family and I. Testicular cancer is just a tiny speck in the rear view mirror for me at this point, but there’s much I’ve yet to write about it. I’ll share with you here my top tips after nearly a decade of cancer survivorship.

Allow yourself to grieve

Yes, we need to grieve as young adult cancer survivors, the loss of our lives as we once knew them, and of all the expectations that we might have had for ourselves. Acknowledge and respect what you feel inside without apology or beating yourself up for it, as processing and releasing all of the pain we can experience after having cancer in our lives is what helps us to move on from it. 

Pay It Forward

Next, we’re all going to have a ton of nervous and anxious energy as cancer survivors. Do something productive with that energy. Run a marathon for the first time in your life. Write your hearts out and share it with the world. Volunteer at a non-profit organization and make a difference for others, or start a new cancer mission or non-profit organization yourself. Play an active role in support groups. Be a mentor. Create a first of its kind event for the community and invite the entire planet. There’s nothing worse than being consumed by anxiety while you’re stuck in Park. Keep those wheels moving and get after things. 

As men, it’s important to build something meaningful and to have a legacy to leave behind, when we feel like we might already be at the end. Live your best life, go amazing places, do amazing things, meet amazing people, and have a great time. Life after cancer is no time to be sitting still and letting life pass you by because you’re worried about what might not ever happen. 

Never Stop Believing in Yourself 

No matter how much pain you’re in, and no matter how far you fall, never stop believing that you’ll crawl your way back up and emerge better and stronger than ever. This is what drives us to keep getting back up, to try new things, and to open doors we might not have otherwise, that will ultimately allow us to thrive after cancer rather than to just survive it. You have to believe in yourself and should never stop, but we’re only human, and there’s going to be times when we’re going to fall short of that. None of us can do all of this alone, and that’s why it’s so important to find the right support and the right people who will continue to fight for you, believe in you, and stand by your side in times of weakness.

No one fights alone. Now get after it!  

StevePake.com

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10 Mental Health Tips for the COVID-19 Pandemic

Nine years ago this month, I had just finished 4 brutal rounds of chemotherapy fighting testicular cancer, and was on deck for a highly invasive surgery the next month in June. You might be surprised to learn that this was all the “easy” part of my cancer fight. What was hard was overcoming all of the mental health issues that many cancer survivors experience in the aftermath, such as anxiety, depression, and even PTSD symptoms. Learning to overcome all of this at a younger age has perhaps left me better prepared for other challenges in life, including the COVID-19 pandemic, so here are some mental health pointers for Mental Health Awareness Month.

The first step in overcoming a painful situation is acceptance. Just like my cancer diagnosis so long ago, there’s no sense in asking how or why it was all happening. “These things can happen” is as good of an answer as one is ever going to get. Years ago it was cancer. This year it’s a global pandemic. Okay then…  

Next, accept whatever it is that you’re feeling inside. “It’s okay to not be okay.” This is a painful situation for many, especially for those that may have lost someone. Be your own best friend and advocate, and allow whatever it is that you’re feeling to process, without beating yourself up for it. Never be ashamed of what you feel. We’re all human and feel so many of the same things inside. 

Just turn off the news, or if you must, stick with your local news once per day as a maximum. Local news tends to be more grounded and relevant for situations like these, far less sensationalized, and thus better for one’s mental health and managing your local situation.

Be present in your lives. Don’t allow yourself to be haunted by what happened yesterday, nor worry about what might not ever happen tomorrow. Focus on the here and now, and do your best to make today as productive and enjoyable as you can. Deal with tomorrow when it comes.

Do something that will put a smile on your face every day. This is a year to truly appreciate the little things and small moments in life. We might not be able to go everywhere, nor do everything we want this year, but it doesn’t mean we can’t find other ways to enjoy our lives, and often they’re right under our noses. This won’t just uplift yourself, but others around you as well.  

Get some fresh air and exercise at least once per day. Go for a walk, a run, or a bike ride, and keep your body moving. Fresh air, the wind on your face, and a change of scenery will all work wonders not just physically, but mentally as well.

Keeping busy with healthy and productive hobbies and outlets are important. Especially during my earlier years after cancer, an idle mind was an extremely dangerous thing in that it allowed all of the anxieties and worries to creep back in. I continue to enjoy my photography hobby, long bike rides with my kids, more time with my family, my backyard fire pit, doing a little writing, and a road trip here and there when we can manage one. I don’t give myself time to worry, and no amount of worrying about cancer ever truly helped my situation. Worrying just made me miserable in the present, and it’s no different for COVID-19.

Socially distance yourselves from toxic people as well. There are some people, especially on social media, who just can’t help but go on and on about how awful everything is. Our attitudes and beliefs are self-fulfilling prophecies in many ways, and so these negative thoughts are often reflections of what’s inside of these individuals. Choose to believe positive things, and surround yourselves with more positive people, and distance yourselves from those that are less than that. You deserve better.

Take some time off when you need it. It’s not a good thing that we’ve all been stressed out and worried, while also working ourselves into the ground in remote or home “office” setups that are often far less than ideal, and unable to take the vacations that many of us had planned. Take some time off anyway. We all need mental breaks and some down time to avoid mental burnout, and you can do that no matter where you are physically.   

Breathe. There are all sorts of numbers out there, but the bottom line is this. While the coronavirus is definitely much worse than the common flu, the vast majority of people are not going to get it, and the vast majority of those who do are going to be fine in the end, especially if you’re aged 60 or under and have no chronic underlying health conditions. Be smart, follow the latest guidelines, live a healthy lifestyle, and believe and have faith that things will all work out in the end.

Best,
Steve Pake

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THE U.S. COULD BE MISSING 25,000 CANCER DIAGNOSIS PER WEEK DUE TO COVID19

THE U.S. COULD BE MISSING 25,000 CANCER DIAGNOSIS PER WEEK DUE TO COVID19

But apparently most people are too obsessed with whether Trump said to inject Clorox or not to even notice or care about this massive elephant in the room.

I’ve had multiple people reach out to me over the past few weeks with worrying symptoms that they might have testicular cancer, but have been unable to find doctors to see them with everything being locked down from the COVID19 pandemic. These have mainly been from outside of the U.S., but combined with a report out of the UK that cancer diagnosis have dropped 75% in the midst of the pandemic when we know cancer doesn’t stop happening because of this, this is a very big problem.

Granted, much of this has to do with people just being afraid to go see their doctors and skipping cancer screenings out of fear, and perhaps a bit less because of availability of doctors to check them, but I’m hearing a lot of different things and this is worrying nonetheless. I have a lot of readers reach out to me from far away places, where finding a good doctor that can successfully treat cancers such as testicular can be a challenge even in ordinary times, and these are far from ordinary times.

Delayed Cancer Diagnosis is a problem

From an article in the Daily Mail:

2,700 cancers MISSED every week: Coronavirus crisis causes urgent GP hospital referrals to plummet as patients are reluctant to visit their doctor

“Cancer Research UK said the numbers being referred by doctors for urgent hospital appointments or checks had dropped by 75 per cent since the start of the coronavirus outbreak.

Sarah Woolnough, from the charity, said about 2,300 cancers were being missed every week as a result, and many patients' operable cancers would become inoperable if they remained undetected.

Separate figures estimate that another 400 cancers a week are being missed because screening for breast, cervical and bowel cancer has been suspended.”

2,700 missed cancer diagnosis per week is a lot, and that’s just the UK. What about the rest of Europe? What about the U.S.? What about the rest of the world? Cancer doesn’t care whether someone is too afraid to go see their doctors because of the pandemic, or if they can’t find doctors that are able to see them and screen them appropriately with the needed tests or scans.

Via another story in the The Sunday Times, Richard Sullivan, professor of cancer and global health at King’s College London, says: “Deaths due to the disruption of cancer services likely to outweigh deaths from the coronavirus itself over the next five years.” He added that, “The cessation and delay of cancer care will cause considerable avoidable suffering. Cancer screening services have stopped, which means we will miss our chance to catch many cancers when they are treatable and curable, such as cervical, bowel and breast.” (See a bit more here.)

While all attention is on treating patients with the coronavirus, those with cancer and other chronic conditions are being neglected, writes @aliceTTimes https://t.co/xTt8x0yMDI

— The Times (@thetimes) April 14, 2020

The same applies to testicular cancer. Although no official screenings are recommended, a point of contention with both testicular cancer advocates and experts, it’s crucially important to get prompt medical attention when testicular cancer is suspected, because of the fact that it’s a fast and aggressive type of cancer.

People will die not just from COVID19, but because they’re missing cancer diagnosis

Per the National Cancer Institute, there are 1.7 million cancers diagnosed every year in the U.S., and around 600,000 people will die from cancer annually. If we assume for the sake of argument that a similar 75% drop in appointments for cancer diagnostics aren’t happening here as well, that’s around 25,000 cancers that could be missed per week here in the U.S. I don’t see why conditions would be drastically different here versus the UK, and I know for a fact that it’s happening from what I’m seeing in my Inbox.

Around 25,000 cancers could be missed per week in the U.S. due to skipped screenings or delayed diagnosis, because of either patient fears and COVID19 lockdowns, or inability to timely access medical care.

Missed or delayed cancer diagnosis are going to cause excess cancer deaths. At the same time, evidence has been emerging that suggests that the coronavirus is not nearly as deadly as had been thought. What are we truly achieving with these lockdowns, and will we just end up with more deaths elsewhere? I don’t know the answers, but I’m asking the questions, and pointing out that secondary costs considerations such as these need to be factored into public policy.

What’s Really Happening on the Ground in the U.S.

Nobody is really reporting on this so it’s tough to know, so I’ve done some of my own investigating.

Surgeon friends of mine tell me, and it’s been widely reported that elective surgeries are all on hold. In some cases, tumors that are discovered in patients may have been present for years, and so can be perfectly safe to monitor for another few months as the COVID situation stabilizes. Dr. Phil Pierorazio, a testicular cancer expert at Johns Hopkins University, said that: “Most ‘diagnoses’ are coded with pathology from an orchiectomy [referring to testicular cancer.]  If surgery is being postponed (safely), you will see a lag in the # of diagnoses... may not be a bad or dangerous thing at all.”

So it’s likely there will be a surge in new cancer diagnosis that have simply been backlogged in the coming months but had been monitored, and this doesn’t necessarily mean outcomes will be any different. Cases that are deemed safe to monitor or postpone surgeries for will be punted down the road a few months, but nobody presenting with a testicular cancer or other aggressive tumor is going to be denied surgery for several months, as a cancer that’s known to be very fast growing and aggressive is allowed to spread.

The trouble is, getting people to their doctors in the first place! What is actually coming into oncology practices? I asked my former oncologist, Dr. Paul Thambi at Maryland Oncology Hematology, who treated me 9 years ago in 2011 for his feedback.

“In terms of new cancer patients, there has been a decline although this is from my observations, [but] have not seen our monthly numbers yet. My experience is closer to 50%, but this is just a guess.

Elective procedures are on hold (ie colonoscopies, screening mammograms, pap smears, etc.), so this is not surprising. Urgent procedures such as colonoscopies done for patients with bleeding, are being done.

Your concerns about delays in diagnoses causing increased mortality is well founded.” (emphasis mine)

Whatever the drop is in new cancers being treated, there is certainly a drop happening in the U.S. because of COVID19 lockdowns.

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The last time I saw Dr Thambi in 2016, and I hope to keep it that way!

As for the approximately 50% drop in new patient referrals for a local group oncology practice, Montgomery County, Maryland where this practice is located is a very affluent area. It has a high concentration of households with at least one Federal government employee, or employees of large government contractors and associated businesses, and so is generally more sheltered from economic downturns. If there’s a 50% drop in new cancer patient referrals at a major group oncology and hematology practice here, I think it’s probably a safe assumption to make that the drop could be far worse in many other areas of the country where there’s been far more severe economic devastation and job loss, and that the 75% drop reported in the UK could easily apply across much of the U.S. as well.

While we’d like to think that the cancer surgeries and treatments that are deemed safe to delay are being delayed, and that the ones that need immediate attention are being taken care of, the truth is that when screenings aren’t happening, new cancers aren’t being found, and this is going to cause delays in diagnosis, and possibly outcomes.

The lives of either undiagnosed or untreated cancer patient lives are on the line here.

Is this Virus Really As Deadly As They Say?

Months into this crisis, we still don’t know what we don’t know about this novel coronavirus, but it’s not hard to find reports of antibody testing showing that the true number of infections versus the number of reported cases are easily orders of magnitude higher than what’s been understood. Most people know when they get the common flu because they have symptoms, but many people are getting SARS-CoV-2 without ever realizing they’d had it!

In Santa Clara County, CA, the true infection rate from antibody tests suggests that the number of cases has been underreported by a factor of 50 to 85, which drops the corresponding mortality rate to 0.12 to 0.20%.

In New York City, it’s estimated that 25% of the city currently already has antibodies for the coronavirus. In a city of 8.55 million, that means 2.1 million already have antibodies, but with only 160,000 cases reported that represents an 11-fold increase in true number of infections. This drops the mortality rate from 7.4% down to just 0.5% in a city with an extremely high population density.

Nobody is going to argue that the novel coronavirus clearly isn’t something above and beyond the common flu, which has a mortality rate of around 0.1%, but the true mortality rates and hospitalization rates of the novel coronavirus are nowhere close to what models had predicted. This is incurring a real and potentially deadly cost against other people that have life-threatening health conditions, while the world is forced to stop to deal only with COVID-19.

The Hill: The Data Is In — Stop The Panic and End The Total Isolation

Fact 4: People are dying because other medical care is not getting done due to hypothetical projections.

Critical health care for millions of Americans is being ignored and people are dying to accommodate “potential” COVID-19 patients and for fear of spreading the disease. Most states and many hospitals abruptly stopped “nonessential” procedures and surgery. That prevented diagnoses of life-threatening diseases, like cancer screening, biopsies of tumors now undiscovered and potentially deadly brain aneurysms. Treatments, including emergency care, for the most serious illnesses were also missed. Cancer patients deferred chemotherapy. An estimated 80 percent of brain surgery cases were skipped. Acute stroke and heart attack patients missed their only chances for treatment, some dying and many now facing permanent disability.

But WE Still Don’t KNow What We Don’t KNow Yet Part “Eleventy Seventy-Three”

Last week, herd immunity was questionable and neither Hydroxychloroquine nor Remdesivir were looking good. Today, the reverse. Everyone who said we should use data to make decisions has to tell us which week the data is accurate. Are we good yet?

— Scott Adams (@ScottAdamsSays) April 29, 2020

I’m NOT arguing that what’s been done to date hasn’t been necessary but is it still necessary, and for how much longer? I’m well aware that silent morbidities are a concern, as are concerns about just how immune people testing positive for antibodies are. Still, these questions need to be asked, and public policies, re-evaluated, challenged, or even protested if warranted, as it’s our right to do, because people don’t stop getting cancer or developing other health problems just because COVID19 is here.

Thanks to Big Tech and social media, that debate is not happening to the extent it should, when anything that questions the status quo is deemed “harmful disinformation” and removed! Although the coronavirus is most certainly being politicized, the right to speak out about policies that people feel are wrong is not a left versus right issue. Tucker Carlson’s segment on this very issue is worth watching for all.

The message is very clear that Big Tech companies like Facebook and YouTube (Google) are NOT our friends. Obey or else, while other people’s lives are on the line from not being able to get cancer and other health screenings done, while the authoritative sources they say cannot be questioned have been wrong plenty of times throughout this. This is totally unacceptable, and just one of many reasons why I’m abandoning platforms such as Facebook for the free and open-source Gab, which actually respects our 1st Amendment rights and our values here in America.

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Nobody gets to tell Americans what they can and can’t protest period. Full stop. I don’t necessarily agree with what exactly is being protested in some cases, but these lockdowns are creating huge secondary issues, massive economic loss, and will start to cause excess cancer deaths. We have a right to question and protest our government at all levels. It is our 1st Amendment right, and this is non-negotiable in American life.

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Excess cancer deaths due to covid19 are going to be a thing — Please Do Not Skip Your Cancer and Other Health Screenings

While it’s difficult if not impossible to predict what the numbers will be, some of the estimated 25,000 missed cancer diagnosis per week in the U.S. are going to translate into excess cancer deaths, rather than cancer survivors. For many others, it could be far more intensive treatments in order to be cured, with additional post-cancer morbidities (side-effects, dysfunction, etc.) that might have been avoided otherwise.

Please follow through with cancer and other health screenings as soon as possible, especially if you’re in a range for elevated risk. Don’t just blow them off or skip them, which is what I think many people are going to do this year. Nobody ever wants to believe that they’re going to get cancer, but that’s not how it works. Nobody ever thinks they’re going to get cancer until it happens to them. How do you know you’re not going to be one of them? Please don’t skip your screenings.

If you have signs or symptoms of cancer, or strange things going on with your bodies such as lumps, bumps, or other strange symptoms or pain, please do not let this go or brush it off as nothing. Please follow through, be your own advocate, and keep making calls if necessary in order to get yourselves checked.

Skipping screenings and delaying getting checked when there are signs and symptoms of cancer can all lead to a poorer outcomes. Early detection is important not just for survival, but for maintaining quality of life after cancer by minimizing the amount of treatments needed. As a survivor of a Stage II cancer who had signs and symptoms for at least two months prior to being diagnosed, I could have spared my body significant exposure to extremely toxic treatments and post-cancer morbidities had I been able to detect my cancer a month or two prior when it might have still been at Stage I.

Skipped screenings or delayed diagnosis could cost you your life, or your quality of life down the road. We all might have to delay a bit, but please do make sure you get those cancer and health screenings done. I know we’re going to start hearing about terminal cancer cases where if only cancers had been detected a few months earlier. Please don’t be one of them, and do everything that you can to avoid this.

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Information about Coronavirus COVID-19 for Testicular Cancer Patients and Survivors

Important Disclaimer: I’m a 9 year survivor of Testicular Cancer, and a long-time advocate for this disease and young adult cancers as a whole. This is my personal website and blog, where my area of focus has been mainly on the handling of all of the mental health challenges in life after having a young adult cancer. While I’m very knowledgable about different treatment options for testicular cancer, I am neither a doctor nor an oncologist, nor am I a medical professional or scientist. In the process of writing this blog, I have reached out to many friends of mine who are, and have incorporated much of their feedback into this blog in the hopes of providing some guidance and reassurance to the testicular cancer community in the midst of this global health emergency.

Please discuss any concerns you have relating to treatments or follow-up care with your doctors. If you feel that there’s anything that should be added to this blog, or that’s inaccurate, has become outdated, or should be corrected, please CONTACT ME.

REVISION HISTORY

• March 13th, 2020: Soft-published draft for invite-only review.

• March 29th, 2020: Completely re-written and fully live. PM: Numerous minor edits for clarity, typo corrections, and other minor clarifications and enhancements.

• March 30th, 2020: Added feedback from Dr. Phil Pierorazio from Johns Hopkins on considerations for the RPLND surgery in the midst of COVID19, and significantly re-wrote the RPLND section. PM: Added section for those going through second-line therapies for VIP or TIP protocol. Restructured the bottom half of the blog for mental health and coping strategies, and broke out the analysis section. Miscellaneous clean-up and formatting.

• March 31, 2020: Numerous minor edits and clarifications, fixed a few typos. PM: Added links to interesting articles and blogs about COVID19.

• April 15-16, 2020: Added considerations for Stage IB and IIA non-seminoma patients, updated the RPLND section, and added a summary of best options for newly diagnosed patients at each stage. Some typo corrections and other minor updates.

• April 23, 2020: The Experts Have No Idea How Many COVID-19 Cases There Are. I’ve needed a break from writing or thinking about this this week, but I’ve added this to the article list at the bottom. There are widespread reports based on multiple studies that COVID-19 is far more widespread than anyone has thought. A Santa Clara County antibody test has shown that number of cases is being understated by at least a factor of 50, and possibly more. This also means that SARS-CoV-2 is far more transmissive than it is deadly. This should be good news for most, but makes it that much harder to protect those at risk.

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I’ve now been writing and completely re-writing this blog as time has allowed for the past two weeks, and finally just need to hit publish. Despite how much I’d wanted to write some super informative guide about the Coronavirus — aka SARS-CoV-2 / COVID19 — that’s been steadily making its way across the planet for the past several months now and how this might affect testicular cancer patients and survivors, the truth is that this is a “novel” (new) virus, and we just don’t know so much about it.

We Don’t Know What We Don’t Know About Coronavirus

Painfully, this is the truth at this point in time. We don’t know what we don’t know about the novel coronavirus, and even what we think we know can easily be questioned. For every piece of seemingly authoritative information out there, nothing can truly be certain, and there’s often contradictory evidence at various levels that’s a long way from being resolved. The authoritative information out there are all educated guesses “based on what we know”, very much of which is subject to change as more is learned.

The CDC initially said that N95 masks were recommended, but then reversed course saying they weren’t, and are now widely rumored to soon be reversing course yet again and will be back to recommending masks. The initial data out of China looked promising and like they were ultimately able to contain this, but there’s also a growing consensus that China has completely fabricated their data and number of deaths at this point as well, throwing all of this data into doubt. We don’t know what’s really happened in China, and foreign reporters have been expelled. Seeing hospitals fill up with COVID19 patients has been alarming, but it’s also being said that for every positive COVID19 tested patient, there are possibly several times more who have it, but are either completely asymptomatic or who only have mild symptoms. Many of these people never require treatment, and thus are never tested, and therefore aren’t counted. This is actually good news in various ways, as it could mean that the true hospitalization rates and lethality are all much lower, but we unfortunately won’t know the truth about COVID19 until long after the dust has mostly settled, and formal peer-reviewed medical and scientific papers are all published.

Just these few points in a sea of them help to illustrate all of the uncertainty around the coronavirus. We don’t really know what we know, and we don’t know what we don’t know, either. We’re all just along for the ride at this point.

Do Not Underestimate The Coronavirus

One thing we do know is the reality on the ground. Don’t chance it. You do not want to get this virus and should do everything you can to avoid becoming infected. Work from home if you can, maintain social distancing of at least 6 feet from others, avoid large groups, wash your hands frequently for at least 20 seconds, and avoid touching your eyes, nose, or mouth directly. Stay home and self-isolate if you’re sick, and clean touch surfaces in your home daily, and wear a mask if you’re sick or caring for someone who is.

This is a virus that has been making a lot of people very sick very quickly, and it’s also been overwhelming health care systems around the world that simply don’t have the capacity to handle everyone that might require treatment to get through it. Although people 65 and older, or those who have one or more underlying chronic health conditions including extreme obesity (BMI>40), are the most at risk based on what we think we know, much younger and healthy people can require hospitalization or even die from this virus.

Everybody is potentially at risk, and everybody needs to pay attention and maintain best practices to avoid becoming infected. ”The best way to prevent illness is to avoid being exposed to this virus”, which is straight from the CDC.

This Isn’t a Bunch of MEdia Hype

I don’t blame people for being confused based on media reports, or not knowing what to believe about all of this, especially when our media here in the U.S. has done nothing but “cry Russia” for the past three years. How could you not be at least a bit cynical? I’ve long pointed out the dangers of a totally dishonest media, and that eventually something serious that we all really need to tune into will come along, and people won’t believe them. And now here we are. This is truly no joke. This is not yet another partisan attack on our President, and we all need to heed the warnings and start paying attention fast, or else many more people will die.

Although this coronavirus does seem to have a 98-99% recovery rate, per the U.S. Surgeon General looking at the data from around the world, it’s the nearly 20% hospitalization rate associated with this virus (based on number of positive test results) that is the real cause for concern. There aren’t enough hospital beds and ICU equipment in the world to treat everybody that might get sick from this all in a short period of time with how quickly COVID-19 is spreading. This virus can’t be contained. This is why we all need to pull together and self-isolate and socially distance ourselves to slow this virus down as much as possible, so that our limited medical resources have the ability to treat all those that might need treatment to get through this. That’s what will keep the total number of global deaths from this virus hopefully still in the thousands.

Dr. Anthony Fauci has stated that he’s hoping that deaths from coronavirus in the U.S. won’t exceed 100,000 to 200,000, with several million cases, and that’s with the extreme measures being taken. For reference, a really bad flu season can claim as many as 80,000 lives under normal circumstances. If we don’t all pull together, we’ll be looking at millions of lives lost in the U.S. alone.

We all need to do this, right now, and keep doing it for the foreseeable future.

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Considerations for Testicular Cancer Patients in the midst of the COVID19 Pandemic

Summary of Best Options at Each Stage During COVID19

Updated 4/15/2020: This blog started out as relaying information from Dr. Einhorn about potential risk factors Testicular Cancer survivors might have with COVID19 if they’d been exposed to Bleomycin, but has obviously become much more than that. Before we get into things below, here’s a quick summary of the recommendations for newly diagnosed testicular cancer patients at each stage in the midst of the COVID19 pandemic.

For Non-Seminoma

Just do surveillance at Stage IA and IB if you can, or BEPx1 for Stage IB if you absolutely feel you must. For Stage IIA, they’re favoring either BEPx3, or continued surveillance if teratoma is suspected. They’re not really doing primary RPLND’s as of March/April 2020. Otherwise, BEPx3 over EPx4 when chemotherapy is needed, and BEPx4 over VIP/TIP for advanced stage cases.

Stage IA (without risk factors): Just do surveillance
Stage IB (with risk factors): Just do surveillance, or BEPx1 if you feel you must.
Stage IS: Defaults to BEPx3.
Stage IIA: Either BEPx3, or continued surveillance if highly suspect for teratoma. Probably no RPLND.
Stage IIB: BEPx3 over EPx4, as one less week of suppressed immune system.
Stage IIC: BEPx3 over EPx4, ditto
Stage IIIA: BEPx3 for Good Risk Stage IIIa
Stage IIIB/C: BEPx4 over TIP/VIP, as BEP can be done out-patient vs. in-patient for the other protocols, and thus is safer with less risk to in-patient COVID19 exposure.

For Pure Seminoma

I have not consulted with a radiation oncologist, but radiation therapy (RT) has generally fallen out of favor for pure seminoma testicular cancer patients because of elevated risks of secondary cancers. For pure semionma, just do surveillance for Stage I, or BEPx3 primary chemo if needed over EPx4 for Stage II, as it avoids an extra week of immunosuppression, same as for non-seminoma.

Stage IA/B: Just do surveillance.
Stage IS: Repeat CT scans and bloodwork
Stage IIA: BEPx3 over EPx4 (one less week of immunosuppression)
Stage IIB: BEPx3 over EPx4, ditto
Stage IIC/III Good Risk: BEPx3, ditto
Stage IIC/III Intermediate Risk: BEPx4

More details and discussion in each section below.

Bleomycin and BEPx3 vs EPx4 For Good Risk Disease

While the common flu often attacks the nervous system, the novel coronavirus is a viral pneumonia that mainly attacks the lungs. Many in the testicular cancer community have been wondering if this virus might be of any additional concern for testicular cancer patients and survivors who have had exposure to the Bleomycin drug as part of their treatments? I’ve also been asking if patients receiving BEPx3 should perhaps consider EPx4 for good risk disease, or other chemotherapy protocols that avoid this drug.

I asked, and Dr. Lawrence Einhorn had the following to offer via email:

“Testis cancer patients postchemo are normal immunologically and have same risk as age matched cases. Virtually all patients getting bleo, especially just BEP X 3 , will have no pulmonary issues. I would be more concerned with a 4 th course of EP and an extra week of low white blood counts.” - Dr E

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It’s comforting to know that Dr. Einhorn, the father of the cure for testicular cancer, didn’t have any real concerns about those that have had Bleomycin and that we “perform with our age groups” with respect to respiratory borne illnesses like these. However, caution is still urged.

Dr. Mark Ball is an Assistant Research Physician and Staff Clinician in the Urologic Oncology Branch of the National Cancer Institute at NIH, with whom I had discussed this prior to hearing from Dr. Einhorn. He specializes in the surgical treatment of all urologic malignancies and performs open, laparoscopic and robotic surgery and offered these comments:

"For full disclosure, my practice focus is on kidney cancer, but I would tell patients with Bleomycin exposure to treat themselves as being in a high-risk group out of an abundance of precaution — just like patients with lung disease, smoking exposure, etc. There are so many unknowns with this virus, but given the decreased functional reserve of many Bleomycin patients, I would definitely err of the side of caution." Dr. Mark W. Ball. M.D., Assistant Research Physician, Urological Oncology, NIH

Dr Ball was reassured by Dr Einhorn as well, but I think think that an ounce of prevention is worth a pound of cure this case, and that we all should be extra cautious. We don’t know what we don’t know about the novel coronavirus.

Options For Stage IB NSGCT Patients

UPDATE 4/15/2020: Over the past several days, I’ve discussed options for several Stage IB non-seminoma patients. Honestly, your best bet is probably going to be SURVEILLANCE right now, in most cases.

A primary RPLND is not a good idea at this point when the hospitals are "hot". This is technically an "optional" surgery for Stage IB, and many doctors probably won't do them as they’re not worth the risk.

Adjuvant BEPx1 chemotherapy definitely is on the table, but you still have to be in an oncology infusion room for a few hours per day for a week with other people in there, plus Bleomycin on weeks 2-3, and then your immune system will crash for a week. They're going to take every precaution, but nothing can be guaranteed, so probably not the best, either. It’s up to the patient, but why risk it?

50-70% odds of already being cured just from the orchiectomy alone depending on pathology sounds pretty good. Go on surveillance and hopefully all will be fine. If not and you end up needing treatment down the road, most of this should have blown over, and then either a primary RPLND or primary BEPx3 will presumably be a much safer option than it is right now...........

These are crazy times. A lot of people justifiably have anxiety and just want to "do something" in these cases, but there are risks to all of that when you can just do surveillance, and may already be completely cured. 

For Stage IA NSGCT, just do surveillance.

For Stage IIA NSGCT

Update 4/16/2020: In theory, the primary RPLND is a good option at this stage, but not right now. Either BEPx3, or continued surveillance especially if the retroperitoneal mass is small and teratoma is suspected, are your best bets.

Dr. Phil Pierorazio is an Associate Professor of Urology and Oncology in the Brady Urological Institute at Johns Hopkins University, and also a world renowned testicular cancer expert and a huge friend to our community. Dr. Pierorazio is one of a rare breed of doctors that handles both the chemotherapy and surgical (RPLND) ends up testicular cancer treatments, and had the following advice to offer:

“For IIA NSGCT, depending on the story we would favor either chemo or continued surveillance.  If a small RP mass and high suspicion of teratoma, totally safe to watch for months.  Even if viable germ cell tumor, probably ok to wait several weeks without any adverse outcome.  Right now primary RPLND very hard to justify.  I expect those restrictions to loosen in the upcoming weeks, definitely by July.” - Dr. Pierorazio, April 16, 2020

BEPx4 vs VIP or TIP x4 for Intermediate and Poor Risk Patients

Another question is if intermediate or poor risk patients should perhaps opt for VIP or TIP protocol treatments rather than BEPx4, and the best advice at this point is to stay the course with BEPx4. The main reason is because the VIP and TIP protocol treatments have higher toxicities and have to be done in-patient as a result, when hospitals could become hot beds for COVID19 as cancer patient immune systems are crashing. This is not a good situation to be in. Thus, with Dr. Einhorn not having any significant concerns about Bleomycin exposure, the advice at this point is to stay the course with BEPx4, as it’s a very standard treatment that can be administered out-patient, which presumably should be safer than having to be in-patient at hospitals that could become hot spots for the coronavirus.

VIP/TIP Second-Line Treatment for recurrences

This is for those that have already been through primary chemotherapy treatments such as BEPx3/x4, or EPx4, but have had recurrences and are now on second-line therapies such as VIP or TIP. Because of the higher toxicities of these protocols, VIP and TIP both need to be done on an in-patient basis, as opposed to out-patient for the primary protocols. Yes, this is definitely a less than ideal situation to be in needing in-patient chemotherapy in the midst of the COVID19 pandemic

Healthcare providers are aware of the fact that those in treatment for cancer are going to have crashing immune systems, and be extremely vulnerable to inadvertent infection by COVID19. This is something that would have to be managed at the local or regional level, possibly with support from the Federal government and FEMA, with area hospitals funneling surge COVID19 cases to one particular hospital or temporary surge facilities.

In New York City, they’re setting up the Javits Convention Center as one such COVID19 field hospital, and the U.S. Navy hospital ship USNS Comfort has been pulled into NYC from Norfolk to handle non-COVID19 needs. The same is true for its sister ship, the USNS Mercy, which has pulled into Los Angeles on a similar mission. Here in Maryland, they’re using the Baltimore Convention Center as another COVID19 field hospital. Arrangements will vary by state.

You need to be your own advocate here, as a lot of people’s minds are in a lot of different places. If you need to be in-patient for second-line chemotherapy treatments, ask your healthcare providers what arrangements are being made to protect you from COVID19. Ideally, you should never be in the same general facility where others are being treated for COVID19, but in a separate facility.

If you’re in the know with how this is being managed in your area, please contact me and I’ll be happy to add this information here, even as just an example to help guide patients for what to look for.

Bleomycin Concerns on receiving oxygen

Mike Craycraft from the Testicular Cancer Society had the following additional thoughts:

“I have been receiving a bunch of inquiries as patients are afraid they are at higher risk for mortality simply because they have received bleomycin and that they “can’t receive oxygen.” I’ve simply been trying to reassure them that the concerns of high FiO2 leading to late bleomycin toxicity is a bit of an older school of thought that is not well elucidated and that if they need oxygen that they should expect that they will be treated. I’ve been advising that it is obviously best to avoid infection but that most guys receiving bleomycin have recovery of their pulmonary function after BEP but if they have pulmonary fibrosis or even are on meds to manage their airway disease then even more precautions to avoid infection seems reasonable.”

Thanks Mike!

Don’t Forget ABOUT THE RPLND Option

Updated 4/16/2020: This section is partially obsolete at this point, but I’m leaving it up as local situations and restrictions are likely to vary. While the RPLND might be on the table for some, they really don’t want testicular cancer patients in hospitals for primary RPLND’s at this point. Situations are changing rapidly here.

For Stage I patients with risk factors, and Stage IIA/IIB patients facing chemotherapy, it might be worth considering having a primary RPLND surgery instead primary chemotherapy, or adjuvant chemotherapy for Stage I disease. What many tend to not realize about testicular cancer is that it can be cured very successfully with surgery in many cases as well, or reduce the amount of chemotherapy that’s needed. Having your immune system down for a week at a time through each round of chemotherapy is already a hazard as it is, but is orders of magnitude more dangerous in the midst of this global pandemic.

If you’re in the right stage range where the RPLND is an option for primary treatment, this is something to consider and discuss with your doctor. Avoiding chemotherapy and the immune system being down takes away some risk, but this also typically means a hospital stay of at least several days, which could elevate your risk of becoming unintentionally exposed if the hospital itself becomes a hot spot for the coronavirus. All of this should be discussed with your doctor, who will best be able to assess risk based on local conditions.

Also via Dr. Pierorazio:

“I think the better advice is to stay out of the hospital... period.  So for Stage I disease, surveillance for the next couple of months until things are figured out.  If there is an imperative indication for surgery (Stage II primary RPLND or post chemo), most of us can find OR time; but I am delaying most surgeries that can be delayed.  As you know from your chemo experience, people going through chemo are isolated and quarantined anyway, so chemo is just as safe now as it was... in my opinion.” Dr. Pierorazio, March 29, 2020

I think this is great advice and valuable perspective, but that there’s a lot to consider here, such as living arrangements and if any family members, or apartment or flatmates have been exposed or could be exposed, and how “quarantined” you can reasonably expect to keep yourself for weeks at a time while going through chemotherapy. There’s a huge difference between someone living in a single family home or townhome that can pretty much completely quarantine themselves from all others for a week or two if needed, and from someone that might be sharing an apartment with others, some of whom might need to keep coming and going depending on their job roles, especially if they’re healthcare professionals or staff and working in hospitals!

I think whether primary chemotherapy or a primary RPLND would be “safer” at this point in time depends on a lot of factors such as these, and that all of this should be weighed very carefully on a case-by-case basis, and in close consultation with your doctors.

For pure seminoma patients. While the RPLND surgery has long been an option for many non-seminoma testicular cancer patients, it’s now an “off the books” option for pure seminoma patients as well. A clinical trial that’s now closed looked at the RPLND surgery for pure seminoma patients, and I’m told on authority that the initial data looked very good and promising. Although not part of the official 2020 NCCN Guidelines for Testicular Cancer yet, I’m told that many surgeons are now offering this surgery for pure seminoma patients at the high volume centers (Johns Hopkins, Memorial Sloan Kettering, Indiana University, etc.)

Don’t Delay Treating Testicular Cancer

I know there’s never a good time to get cancer, but….

My heart goes out to everybody having to deal with any sort of cancer in the midst of this global pandemic. Please support these people and their caregivers in any way that you can. I’m sorry to say that metastatic testicular cancer doesn’t wait around for anything or anybody, including coronavirus, and that you should try to avoid having treatments delayed if at all possible. I have seen doctors asking colleagues on Twitter (not specifically for testicular cancer) what their thoughts are on delaying treatments for some of their cancer patients in the face of coronavirus outbreaks. I wouldn’t advise trying to delay treatments. Testicular cancer is one of those cancers that can progress very rapidly, and thus needs prompt attention and treatment.

If you happen to drag your feet on making a treatment decision, just remember that treatments generally need to be started (or not if surveillance is an option) within 4-6 weeks of your last CT scans. If you fall outside of that window, either you’re on surveillance by default, or need to get another set of scans done to re-stage your cancer if you decide to move forward with treatments. What can happen is that a Stage I cancer that had already recurred beneath the radar can progress to a Stage II by the time you reach that 4-6 week window, and thus a Stage I treatment would now be underpowered for what’s now a Stage II cancer. So be careful here. Testicular cancer experts are all well aware of this, but many are not, and might not necessarily be tuned into the timing recommendations.

Obviously, if there’s a chance that you or a family member have been exposed to coronavirus and you’re in the middle of treatments, please let your healthcare providers know immediately, and take every possible precaution.

Impacts to Testosterone Levels and Fertility After Infection

There’s evidence out of China that COVID19 infection can possibly hamper testosterone levels and potentially fertility. Although no conclusions have been made, this is just pointing to a need to study this that we in the testicular cancer community especially need to keep our eyes on. Although testicular cancer survivors generally maintain fertility, testosterone levels can be more hit and miss. This is another reason for survivors to assume a higher risk level of some sort out of an abundance of caution, and to take every precaution one can to avoid becoming infected. I’ve been doing okay without TRT (testosterone replacement therapy) for the most part since my testicular cancer diagnosis 9 years ago. If I happen to become infected with COVID19, will that put me at a permanent deficit and force me into TRT for the rest of my life that somebody else with two fully functioning testicles would be able to withstand? Nobody knows, and I’d rather not find out. We just don’t know what we don’t know about this virus yet.

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Coping and Mental Health Considerations for Survivors, and Everybody Else

As I’ve long written, overcoming a health crisis such as a disease or cancer, or even this virus, is about far more than eradicating the physical disease, but also the mental one.

RELATED BLOG: CANCER IS NOT JUST ROGUE CELLS - AND NOT JUST INSIDE THE PATIENT

I had to take a break from furiously editing and trying to re-write this blog for a week, because I unfortunately reached meltdown stage. I know what it’s like to be facing months of uncertainty and feeling like I’m looking down the barrel of a loaded gun, and wondering if I’m going to live or die. It’s the same as I felt when I was diagnosed with cancer, and perhaps everybody knows what that feels like now in a way. But I also know what it feels like when your body is getting ready to pack up and die because it couldn’t take what it was going through anymore, and I also know what it feels like to be on a ventilator. They were supposed to have pulled that before I woke up from my RPLND surgery, but guess what?

These are all incredibly painful memories from my fight against testicular cancer so long ago that I’d hoped to never remember or think about again, only for all of them and more to come back and haunt me once again. I wouldn’t wish memories like these on anyone, but perhaps if more people had them, they’d all take this a lot more seriously than some are.

That said, here’s a little advice from someone that’s “been there”, and is once again finding themselves in a lot of the same places again in the midst of this global pandemic.

It’s Okay To Not Be Okay

I made the mistake of finding and then trying to read a more detailed lab report about all of the ways in which mice can die from this virus, who have very similar immune systems to humans, trying to learn if those of us that have more central nervous system damage from treatments (typically following with the additional round of Cisplatin treatment, whether EPx4 or BEPx4) might be more susceptible to this virus. That’s when I was no longer “okay” and had to turn off the Internet and just stop. It’s what brought back all of the painful memories above, triggered a bit of PTSD which I initially tried suppressing by first becoming very distant, and then with a bit of alcohol, but finally had to retreat into a quiet corner of my basement and let it all out for a bit.

Take Care Of Yourself

Don’t deny yourselves the above. We’re all human, and we’re all afraid and feeling the same things right now, wondering what’s going to happen, wondering if we’re going to live or die, if our families will be okay or not, and we can never truly know. It’s just like being diagnosed with cancer, wondering if treatments are going to work or not, and then being scared to death worrying if our cancers will come back or not through the months and years of scans and follow-ups. In a way, everybody worrying about COVID19 now understands much of what cancer fighters and survivors go through, and just how much it sucks.

After I let all of these worries and a bit of cancer-related PTSD flashbacks out, I was able to be far more positive and engaged with my family than I had been. And now I’m doing far more positive and productive things, like finishing this blog, spending time with my family, going for runs and doing a bit of weight training in our basement, and watching fun movies and TV shows with my kids. All of that matters, but you have to take care of yourself first before you can take care of others. Don’t forget that.

TUrn Off The News, the Internet, and that Damned Map

I’m serious. Turn off the news, turn off the Internet, turn off social media, and stop repeatedly clicking on that now infamous map with all of the red circles that keep on multiplying and getting bigger. I can’t go anywhere online now without reading about the coronavirus when I think we all just need a break.

The latest large bold font daily death count and case count headlines from every country in the world and their steady increases aren’t helping anybody at this point. Yes, it matters and is worth being reported, but for the vast majority of us that are not in charge of managing this in any way, it’s irrelevant. All we can do is our best to avoid becoming infected, and to just focus on ourselves and our own mental and physical health, and of our families and loved ones.

Stick With Local News

I would strongly suggest turning OFF all but local news sources at this point. Local news sources tend to be a little less sensationalistic and a little more relevant, but try not to read it more than once per day, or twice if you really must. Try your hardest to make sure that you glaze over the bold headlines with the “numbers”, and just go in, find out what you need to know as far as the latest restrictions or CDC guidance, and then get out and just take care of yourselves and your families.

Find Distractions

Hobbies are a good thing for times like these. I’ve been posting landscape and other cool photos on Gab, which started off as a fun thing to do at the start of the year before anybody was tuned into this, but has evolved into a form of therapy now that we’re all in lockdown and discouraged from going anywhere! That’s a far better thing to be flooding social media with than seeing wall to wall COVID19 posts that we’re all tired of. Perhaps I’ve inspired this, because I see people doing it now! :)

Click or tap on the image for a nice distraction and break from all of this! I’m going to keep going!

Worrying Doesn’t Accomplish Anything

Fun fact. I worried myself straight into a full-fledged PTSD meltdown as a cancer survivor. I couldn’t handle the uncertainty and not knowing, all while a few of the cancer fighter friends that I had made died. I feared I was next, and look where all of us are today as we read about the latest celebrity or person of interest that has either tested positive for COVID19 or has died of it? Same shit, different day!

Anybody who knew me in the first half of 2013 might not have known just what a dark and precarious place I was in, two years after my cancer fight. My mind was being ravaged by PTSD, I had been suicidal, and I was just hanging on by a thread for much of that year. I came to realize that worrying never accomplished anything for me other than making me miserable, and just learned to let it go and that we can never know when our time is going to come.

Related Blog: The Best Way to Survive Cancer, Is to LIVE!

Give that blog a read, and I have a hunch that’s where many of you are in attempting to process coronavirus information right about now. Guess what? Just as with cancer where you can’t possibly predict the future or know your future outcome, the best way to survive coronavirus is to “LIVE” as well. If you read that blog, you’ll know what I mean.

Be Present in your lives

Get in with whatever news or social media you need to catch up on, and then get the hell out and get back to your life. You’re not “being present” in your world when you’re reading the news or social media. That’s being present in the Internet world, which isn’t the same thing as the real world and the actual lives that we live. Just like I learned to stop worrying about if my cancer was going to come back or not, now I’m using the same lessons to teach myself to stop worrying about if I’m going to get COVID19 or not.

The best thing you can do is to just be present in your life, take care of yourself, take care of your family, and stay engaged with whomever you have around you, even if it’s just a dog or pet! Read some good books, watch some fun movies, and do some fun things. Get outside, go for a nice walk everyday, get some fresh air and a change of scenery. You can still do things like going hiking and going for bike rides, just maintain that social distance.

Last night I watched the latest Grand Tour episode (Clarkson, Hammond, May) with my kids, and we laughed so hard that we cried at various points, which is exactly what we all needed. More of that, and less time obsessively worrying about what might not ever happen. I’d rather spend these days laughing with my kids and doing fun things, than worrying myself to tears in my basement.

Take A Deep Breath (A Bit of Analysis)

Not everybody is going to get this, and the fatality rate is only around 1-2% if you do.

Breathe a little.

I know it’s easier said than done, but in the midst of all of this mayhem and panic of a global pandemic with a novel virus, let’s be rational and look at some real numbers.

If we all do our part, the current estimates are that we’ll be able to limit the spread of coronavirus in the U.S. to only several million cases in a country of 330 million, and 100,000 to 200,000 total deaths. For comparison, a bad flu season typically claims around 80,000 lives. So we can estimate the risk of getting coronavirus as being anywhere from 1 in 33 to 1 in 330 overall with current mitigation.

If we all do our part, it’s pretty unlikely that you’re going to get the coronavirus in the first place, and even if you do, you have a 98-99% chance of overcoming it without risk factors.

A significant number of people are getting this and don’t even have symptoms.

If you happen to get the coronavirus, many people that get COVID19 might be completely asymptomatic and might not ever realize they had it. It’s totally unknown at this point how big this group is, but it’s being acknowledged that it could be one-third or even one-half of all cases or more! Next, of the people that are tested positive for COVID19, the sample for which to date has possibly been biased by people showing symptoms, around 80% have mild symptoms not unlike the regular flu and just need to self-isolate at home. Of those that have symptoms, less than 20% require hospitalization, and only about 5% might require an ICU bed.

The Bigger Picture

Let’s present a bigger picture and make the math easy by assuming that half of all COVID19 cases are either not tested or are completely asymptomatic. 20% of the half that require hospitalization is only a 10% hospitalization rate overall, and ~4-5% of the half that have symptoms requiring an ICU bed is about a ~2% overall ICU rate. I’ve been privy to some emails from regional ER doctors in the U.S. sharing what they know so far with other medical professionals, and I’ll just say that if one requires ICU level care on a ventilator for this, that the prognosis is not particularly favorable. Some will recover at this stage and some won’t, and that’s what gets us down to the approximately 1-2% fatality rate, or 98-99% recovery rate that’s currently being estimated for COVID19. And remember, not everybody is going to get this! It’s easy to get lost in all of the media reports, and start to believe that this virus is killing everything in its path and putting everybody on ventilators and ICU critical care, when that’s absolutely not the case. This virus should not be underestimated, but it’s not the virtual death sentence like Ebola was.

Compared to Testicular Cancer

I know this is apples to oranges, but to put this all into perspective, I had a 1 in 250 lifetime chance of being diagnosed with testicular cancer and happened to get it. My Stage IIB diagnosis back in 2011 was quoted with a 90-95% cure rate, which freaked the f*** out, and who wouldn’t be? It’s a little more likely that people are going to get COVID19, but then you have even better odds of beating it, and as a bonus you don’t have to have a body part chopped off to beat it.

So then I shouldn’t be afraid of COVID19 with a 98-99% recovery rate, right? LOL

Numbers are always nice, but that’s now how they work.

It’s the Uncertainty, Stupid

Nobody likes uncertainty like this. As I look back on the wisdom that I’ve gained as a cancer survivor for 9 years, it’s all of the uncertainty surrounding it and the loss of the feeling of control, which drives the fear, drives the anxiety, and all of the mental health issues, that cumulatively ended up being so much worse than the cancer itself ever was. The same thing is happening here with COVID19. Nobody likes having their lives turned upside down and losing their feelings of control in life, whether it’s cancer or some crazy virus.

It’s the uncertainty about the virus in the broader population, and about many of our jobs and economic plight that’s fueling everything as much if not more so than the virus itself is. When it’s your ass and life that’s on the line, we never feel like we have anything better than 50/50 odds no matter how good the numbers look.

Having another sense of deja vu. Lookie here.

Related Blog: HOW TO OVERCOME YOUR FEARS AFTER CANCER

Read the above blog and replace “cancer” with “COVID19”, and it’s all the same.

All of these fears and uncertainties are absolutely no different than when I was facing my “good risk” cancer both during treatment and the years after. These odds are even better, but nobody likes having their lives come down to a “coin toss”. Needless to say, when this dust settles, and it will, we need to be thinking ahead about mental health resources including many who will probably have PTSD symptoms from all of this. Been there and done that, too.

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The Bottom Line — Do Everything You Can To Avoid Coronavirus

The bottom line is that cancer survivor or not, you do not want to get the coronavirus, and we should all be self-isolating and social distancing right now to help prevent its spread. Among the many things we don’t know about the novel coronavirus is how significant asymptomatic or pre-symptomatic transmission is contributing to the spread of this virus. If we all do our best to self-isolate and socially distance ourselves now and just assume that we already have it and could be spreading it, that’s how we’ll stop spreading it, and we’ll all get through this together a lot faster.

As reassuring as it was to hear from Dr Einhorn that he doesn’t personally believe that the testicular cancer community has any elevated risk to respiratory borne illnesses such as these especially from Bleomycin exposure, we don’t know what we don’t know and how exposure to this virus might affect our bodies in other ways. My body has already been through hell and back fighting cancer, and so I really don’t want to get this virus. Who would argue with that? We young adult cancer fighters and survivors have been through way too much in our lives already to play the betting game like this with some crazy virus.

I hope this blog has helped people to wrap their heads around this a bit better, and that it provides at least a bit of guidance for those facing cancer today.

God speed everyone! Stay safe and healthy, and God bless all of our front line doctors, nurses, staff, and medical professionals that are out there fighting for us. Pray for them, and pray for their families and loved ones as well. They need them.

Best,
Steve

Please do not hesitate to contact me if you have any questions about all of this and would like to discuss. If I can’t answer your question, I might know people who can!

Helpful Links and Resources

Government, NGO, and Medical Sources

Johns Hopkins Coronavirus Resource Center
Coronavirus COVID-19 Global Cases by Johns Hopkins CSSE (that snazzy map)
Centers for Disease Control and Prevention: Coronavirus Disease 2019 (COVID-19)
World Health Organization — Coronavirus Disease COVID-19 Outbreak
National Institute of Health — Coronavirus Disease 2019 (COVID-19)

Interesting Blogs and Articles

The Experts Have No Idea How Many COVID-19 Cases There Are
Coronavirus - The Hammer and the Dance (Great blog that really spells it all out.)
Masks Save Lives (This is anecdotal at this point, but I agree and they have a point.)
N95 Mask Re-Use Instructions (Supposedly via the inventor of the N95 masks.)
99% of Those Who Died From Virus Had Other Illnesses, Italy Says
The Proximal Origin of SARS-CoV-2 (Nature Medicine)
Debunking Nature Magazine's "COVID-19 Definitely Didn't Come From A Lab" China Propaganda (ZeroHedge: A rebuttal to the above)
COVID-19 - Evidence Over Hysteria (Originally on Medium but censored. There was a lot of interesting information in here, but I personally thought the conclusions were dangerous and BS. It was wrong to censor the article, though.)
COVID: Stop Pretending We Know Things (a rebuttal to the above)
Carl T. Bergstrom Tweet Thread Response to Evidence Over Hysteria (another rebuttal)
As Long As Communist China Controls The World Health Organization, It’s Completely Unreliable (Why Freedom of Speech and the Press, and transparency and accountability are all so important. You never know who you can trust, and sometimes supposedly authoritative sources of information aren’t, are compromised, or allow politics to get in the way of potentially valuable or life-saving information!!!)

If you read one of the above blogs or articles, just read “The Hammer and the Dance”. It really spells out what’s going on, and why it needs to happen the way it is. The CDC has told us that N95 masks aren’t needed, yet countries with heavy mask usage are seeing much slower spreads of this. Anecdotal, yes, considering these countries have been doing a lot more than other, but it’s an interesting point. It’s been said that COVID19 couldn’t possibly have “come from a lab”, but there’s a rebuttal to that as well calling bullshit, and that it very well could have. The ‘Evidence Over Hysteria’ article had a lot of interesting information in it. I thought the conclusions were BS though, and others seemed to agree with their own rebuttal articles and Tweet threads.

As you can see, it’s difficult to find solid information, we don’t know if what we think we know is really true or not, and we don’t know what we don’t know, either!!!!!

The following Information Is Beautiful graphic (below) can help to put things in perspective, which I’m going to present here as-is with two warnings.

The first warning is that a PhD microbiologist friend of mine with familiarity in this area and whom I very deeply admire and respect had some very serious issues with earlier versions of this infographic, some of which have been corrected and some of which have not. They felt that the graphic was minimizing the danger of the coronavirus and giving people reason to not take it seriously, that information was not being presented as it should be, and that all of the saturation media coverage was warranted. However, they also said that there was no need for people to panic or hoard supplies, which is precisely what the saturation media coverage has fueled.

The other warning I’ll give is that there’s a growing consensus that China has been extremely dishonest about the data they’ve reported to the world, and has probably had far more COVID19 cases than what they’ve claimed. Even countries with extremely strict epidemiological authority such as South Korea, Singapore, Japan, and Taiwan (not pictured below) are still seeing slower but steady marches of this virus, whereas China claims to have completely flattened it, thus being at odds with the rest of the world. Italy also has the oldest population in Europe, and already tends to have horrifically bad flu seasons as far as annual number of deaths on a per capita basis, for whatever reason. Just realize that there can be far more to these numbers than meets the eye, so don’t read into them too much. Despite its potential to possibly mislead or misinform, I still find this infographic useful and worth sharing.

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How Seasonal Depression and Low Testosterone Can Cause Suicidal Episodes in Testicular Cancer Survivors

I’m unfortunately writing this PSA out of personal experience. As much as I might have hoped to just have a clean getaway from the 2010’s after all my family and I had been through in this decade, they weren’t done with me yet. Yes, I had a suicidal episode of all things over the Christmas holiday of 2019. What a wonderful way to end 2019 and the entire decade, right? It wasn’t all palm trees and sunshine.

[Note: This is one of those blogs where literally everything ties together. Mental health, physical health and wellness, proper diet and eating right, getting enough exercise, taking proper care of yourself, and then what can happen when you do none of the above and allow for the possibility that your body (and mind) gets into a very serious tailspin. It took me an extra day just to add links to all of the related blogs and add a few photos. Take your time, definitely check out all of the linked and related blogs, and get in touch if you want to talk about anything. Although not present on social media much, I’m always in the background for the testicular cancer and broader AYA cancer communities, and am just a click away. - Steve]

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Related Blog: TESTOSTERONE CHALLENGES AFTER TESTICULAR CANCER

For testicular cancer survivors adjusting to their new lives after treatments, many doctors like to think that the other testicle will “pick up the slack” as far as our testosterone levels go, but it’s not nearly that simple, and this has merely been an assumption by many doctors that hasn’t been backed up by any formal data. Hormonal peaks and valleys are common, which I’ve most certainly experienced over the years, along with a general ‘irregularity’. The best way to describe how a man can feel when having a testosterone level dropout, is like Superman without his powers — weak, lethargic, depressed, afraid, directionless, and completely lacking any confidence about anything. Very manly, right? With a single testicle, we’re not like a twin-engined aircraft that can still fly almost as normal with a single engine out. As I wrote in my above blog, for the most part I don’t have any ongoing symptoms of low-testosterone, and my body managed to figure things out after a few years. I’ve decided to forego any testosterone replacement therapy (TRT) so long as I’ve remained asymptomatic, but I’m not always asymptomatic, and the bottom fell out on me over the holidays.

The end of the year, and in particular right around the winter solstice — the shortest day of the year — has always been a problematic time for me. It was on one of the first winter solstices that I experienced after my cancer fight, that I noticed just how out of it I felt, almost as though my body wanted to shut down and hibernate. I was experiencing extreme fatigue and felt very depressed, had zero libido, and noticed around the same time that I didn’t even need to shave along with the loss of some body hair. All of this was a dead giveaway for low-testosterone, which a subsequent visit with an endocrinologist confirmed. I’ve managed to minimize these seasonal hormonal troughs so long as I’ve kept myself in pretty good shape and hit the gym regularly, while also maintaining a reasonable diet.

So of course, I hadn’t been doing any of this lately. A brutal work travel schedule the entire last third of 2019 obliterated any fitness routine I might have attempted, exacerbated my chronic fatigue issues, and my diet regressed as well. In hindsight, it’s almost entirely predictable that something like this was bound to happen, because I’d been doing absolutely nothing that I should have been. And there I was.

A Suicidal Episode at Disney World Due to Seasonal Depression And a Hormonal Dropout

We trekked all the way down to Orlando from our D.C. area home base for a week at Disney World over the holidays. With 5 human beings and a dog and all of the expense and logistical complications that come with flying a family of that size anywhere, we decided to drive in our land yacht all the way down. This saved us a few thousand dollars in airfare and car rentals, which is a big part of why we bought it. We split up the drive over two days, but it’s still a long friggin drive, and I was seriously fatigued from my work schedule in the preceding few months. I couldn’t catch even a single friggin break, because right on cue our alarm system acted up the night before we were leaving, which disrupted my sleep and made things even worse. Our first day at Disney World was Monday, December 23rd 2019, the exact date of the winter solstice, and almost like clockwork I couldn’t have been more out of it.

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Here I was at the “happiest place on earth”, and I didn’t want to be there at all. Heavy feelings of depression hit me out of nowhere, I wanted out but felt trapped, and that’s when the suicidal thoughts hit me. None of it made any sense to me. Why on Earth was I having such godawful thoughts over Christmas, with my family, in the warmth of Florida, and out of the cold, miserable, and swampy sh*t hole of D.C. while at Disney World of all places? I was afraid and confused and definitely feeling very lost.  

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Do I look suicidal here? Fooled you! Not literally right in this very moment, but around this time is when it was hitting.

Related Blog: PROTECT YOUR ENERGY FROM THE CRINGE AND JUST DO YOU

I think I must have felt it coming somehow, because I decided to go totally ‘dark’ once again. I logged out of all social media accounts, never looked at the news, and didn’t even put up any Merry Christmas or Happy New Year greetings on social for family or friends. When you’re having really awful thoughts like these, do you really need to be reading about all of the twisted sh*t going on in the world, or seeing yet another friend blowing a gasket over the latest thing they’re outraged about in the news, which probably isn’t even true? I just focused on staying in the moment with my family, put all external worries and concerns out of my mind, and luckily whatever spell this was faded by the middle of Christmas Day.

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It saddens me that I have a bit of experience with suicidal episodes, but it can most certainly come with the territory of being a cancer survivor, and really speaks volumes about just how badly hormones being out of whack can mess with your head. The first time I’d ever been suicidal in my life was just short of two years after my cancer diagnosis, when PTSD was ravaging me from the inside out and burning my mind to the ground. It was the same feelings of feeling trapped with no way out, and just wanting to end it all as a means of escaping the pain that you can feel from PTSD. I was terrified of my body and couldn’t bear to live another moment in it, but how do you escape your own body? Well… 

Don’t do it.

National Suicide Prevention Lifeline: 1-800-273-8255 

Call the above number any time in the U.S. Reach out for help. Call a friend. You can even try the GRTY Health Chatbot. You can CONTACT ME and I’m happy to talk people through these situations, but I can’t guarantee I’ll be immediately available. Things will get better. Everybody is entitled to a “bad day”, especially as cancer survivors. The next one will be better, I promise. Believe in yourself, don’t give up, and keep getting back up. You will find ways to make it through whatever’s been haunting you, just as I and many others have.

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At Disney, I took a deep breathe, told myself that this wasn’t what I wanted and had no idea where these thoughts were coming from, and just fully immersed myself in the moment, enjoying each and every second with my family at Disney. I didn’t give myself time to think or my mind the ability to wander, and that’s what turning off you phone, social media, the news, and all of those other distractions is all about. When you’re immersed in these external things, you’re not in your moment; you’re in someone else’s, and potentially someone else’s pain and misery, which there’s been no shortage of on the Internet! Stay in the moment — your moment. How “clean” is your social media feed? How clean is the news? Everybody’s experiences are likely to be a bit different, but I personally can’t go on social media or read the news without wanting to throw up. This is why when I’m feeling vulnerable or have dark thoughts going through my mind, I just switch all of this garbage off. At Disney where you pay by the minute, running around like crazy and hitting 20,000 steps per day probably did a lot to jerk my body out of whatever hormonal slump I was in, and I perked right back up.

Different Causes Require Different Responses

Of course, nobody wants to keep feeling this way. It can be tough to decipher where deeply depressive states or suicidal thoughts are coming from. I’ve been in depressive states because young adult cancer is a terrible life situation to have to deal with and adapt to, having nothing to do with hormones at all. Cancer sucks and there is no easy cancer, period. PTSD after cancer definitely caused some suicidal thoughts, but I’ve also had them from other seemingly impossible and completely unfair situations that life has thrown at us as well. The 2010’s were a rough decade for my family in far more ways than just cancer. It can be tough to know what to do, as each cause requires a different response.

Related Blog: PTSD After Cancer

There’s plenty of reasons to be justifiably upset, depressed, or distressed as cancer survivors, which could possibly lead to suicidal thoughts. Life doesn’t tend to let up after cancer either, and the rest of the world doesn’t care that we had cancer, either. The point is, don’t discount or forget about hormones and their potential to wreak havoc on our minds when they’re out of whack. Plenty of my other blogs might help you to work through many of the other sources of pain and distress after cancer, but keep testosterone levels on your radar screens, especially if something seemingly comes out of nowhere and you’re not even sure why you’re feeling the way you are.

Much of my off-and-on depression over the years has been situational based from serially bad and traumatic situations that my family and I have been forced to bear going far beyond just cancer, and not because of chemical imbalances, hormones, or other things. But testosterone dropouts like these from cancer can still rear their ugly head even 9 years out, if I’ve been doing a terrible job of taking care of myself, as had been the case over the last few months of 2019.

What I’m Doing Now

I can blame a grueling work schedule all I want, being 50% travel and hardly being home, and then having to work two full-time jobs at my full time job, too. None of that helped, but did I ever hit the hotel gym while on business travel? I did exactly one time, the entire year. Did I maintain healthy eating habits, or did I allow myself to completely fall off the bus on that too? Did I make an effort to get back into the gym when I was home? Not really. I just kinda gave up for awhile and hoped for the best, and ended up with the worst. No, my work schedule wasn’t forgiving at all, but I also wasn’t doing jack shit for myself, and paid a terrible price.

The moral of my story is that if I had even been attempting to do what I know I need to do to take care of myself, this most certainly wouldn’t have happened. I need to do a much better and more consistent job of taking proper care of myself, and can’t allow anything to get in the way of that. I’m doing the same things now that I’ve known I’ve needed to do all along, which is to get my ass into the gym at least a few times per week, clean up my diet and lay off of all of the caffeine and ‘boba’ and other garbage, and make sure I’m getting enough rest, and I already feel a zillion times better. It’s one thing to just expect to feel a bit of seasonal depression, a semi-predictable hormonal dropout, and feeling totally wasted for a few days, but it’s something entirely different when it devolves into suicidal thoughts to go along with it.

Related Blog: HAVE I MENTIONED HOW IMPORTANT REGULAR EXERCISE IS FOR CANCER SURVIVORS?

Read the above blog published almost exactly a year ago where I said the same goddamned thing. Too bad I didn’t listen to myself! Maybe this suicidal episode is the wake-up call and motivation that I need to finally start taking consistently good care of myself, and to stop making excuses.

Rescued By Disney World Again

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Disney was, of course, fantastic. The new Star Wars Galaxy’s Edge attraction at Hollywood Studios which had literally just opened two weeks before was amazing, and the new rides were mind blowing and unlike anything you’ve ever been on before. We all had a great time even if I was shaken up a bit, and now I can say with authority that Disney has rescued me from some truly awful things not once but twice. 

Related Blogs: Overcoming Post-Cancer Depression

The first time I went to Disney World with my family in April of 2013, I was just a few months out of the first time I had been suicidal due to heavy PTSD for over a month. While my suicidal thoughts have never been anything more than brief moments, it’s enough to leave a mark on you, and the depression can linger. Here I was just over two years out from my cancer diagnosis thinking I should have been through it all, only to realize that I was merely at the start of a far greater challenge adapting mentally. I also felt like if something was going to happen to me, it was going to happen sooner rather than later, and that I just needed to truly live every moment that I had. Most testicular cancer recurrences occur within two years from the end of treatments for non-seminoma patients (5 years for pure seminoma), and towards the end of this window is definitely a very nerve-wracking time.

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That week at Disney back in 2013 was truly magical in that I didn’t think of cancer even once, never had a single depressive thought, and just cherished every magical moment with my family. Here I was feeling so lost and directionless, but Disney taught me exactly what I needed to do. Just live and enjoy every moment of your life, and never let a second of it go to waste.

Related Blog: The Best Way to Survive Cancer, Is to LIVE!

And then here I was again nearly 9 years out from my cancer diagnosis, in the midst of something awful once again due to a perfect storm of internal and external factors, combined with the winter solstice and a testosterone level dropout. Disney World and in particular the new Star Wars Galaxy’s Edge attraction was so amazing that I literally didn’t have time to be depressed or anything else, but instead found myself in awe. And then the fast pace of Disney (paying by the minute!!) snapped my body out of whatever physiological or hormonal slump it was in. 

The depressive and suicidal thoughts vanished at Disney, just like the money in our wallets! 

Magic!!! (LOL!)  

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Cancer Can Affect People For Their Entire Lives

The last thing I want to point out is just how illustrative this episode has been of the fact that AYA (adolescent and young adult) cancers can affect people for their entire lives. If you thought that because I’m 9 years out from my cancer diagnosis that everything is okay, that I’ve been through everything, that it’s all in the distant past, and that everything is fine and good, you’d be wrong. I’d like to think that too, but my young adult cancer experience as a whole is still something that I have to manage, as a whole. 

I have to keep myself physically active and exercise regularly, especially in these winter months in order to keep myself ‘perked up’ hormonally. Although it’s a fraction of what it used to be, I still have chronic fatigue issues. I can push it for awhile and far more than I could in the early years, but there’s still a line that once crossed, my body will basically shut down and I can’t really do anything for a day or two. I still have to watch what I eat and eat a well-balanced diet, to help maximize my potential and the energy that my body does have available. I still have neuropathy related pain and shooting nerve pain just about every day. And I can’t have toxic people in my life at all, and my tolerance for BS is basically zero, which is something that many, many cancer survivors will tell you.

If you understand how hard I’ve had to work and fight just to overcome depression, all of the anxiety issues I’ve faced, the PTSD, and the suicidal episodes, then you’d understand why other people causing issues in any way are just a non-starter. It’s an all hands on deck ordeal just to keep my own mind afloat and on an even keel at times, hence not having any tolerance for other people that might rock my boat with their bullshit, whether they realize it or not.

As I write this, there’s someone in my life who’s just had some pathological need to bring up the fact that my childhood best friend commit suicide every time I see them, among other things. The more they brought him up, the more I tried to suppress these painful memories until one time I wasn’t able to do so, and spent the next six months re-grieving this loss, re-experiencing all of the pain, and just being depressed again at the childhood best friend that I lost very early in life. They were finally called out for this behavior and were disinvited from visiting us for the past year for more reasons than that, and not only were they completely unapologetic, but were offended and called me ungrateful and more.

With a history of mental health issues from cancer and a few suicidal episodes myself, do you think this sort of behavior is something that I really need in my life? I should neither have to explain any of this, nor should I have to provide an answer to the above question, and yet I’m having to do so. I haven’t given up on this person yet because of how much I care about them, but I’m close. Some people are just truly unbelievable.

Related Blog: Steve Pake's Top 10 Guide to Surviving a Young Adult Cancer (In particular, read the section on removing toxic elements from your life.)

you have To Cure The Whole Patient 

Related Blog: CANCER IS NOT JUST ROGUE CELLS - AND NOT JUST INSIDE THE PATIENT

As I wrote in the above blog, “curing cancer” is about a lot more than just eradicating some rogue cells from someone’s body. Cancer becomes as much a disease of our minds in the way it can haunt us, as it is of our bodies. If you want to cure a patient of cancer, that means curing the entire patient and not just removing the rogue cells. Although this episode was merely from a hormonal dropout (and a bit of seasonal depression) and not from some broader core psychological issue, it’s enough to show me that this “disease” is still present, and something that I need to keep managing much better than I had been. I’ve failed plenty of times as a cancer survivor, in understanding what I’d even been through, in managing my body, in managing my mind, and in managing the people around me. It’s important to learn from your mistakes, and so I hope sharing this bit of darkness from my life as a teaching moment can continue to help others that have faced the same.

I hope to never find myself here again in my life, and I hope you don’t either. 

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Onwards and upwards for 2020!

Steve

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Two things before you go. If you’re struggling with any of this and want to talk, please do get in touch. I’m happy to talk with anyone about any of this to help people find their way through the dark times, but if you’re actively contemplating or attempting, please call 1-800-273-TALK (8255) right now, as I can’t guarantee that I’ll be immediately available.

You’re also more than welcomed to check out all of our fun photos from Disney World below, and we also swung by Kennedy Space Center as well, which was amazing albeit slightly rained out. Despite all of my and our struggles, the point of sharing fun photos of our adventures of the year is to illustrate lives well-lived, and that we’re not just sitting around and sulking and feeling sorry for ourselves. I’m sorry, but fuck that. Life is meant to be lived and enjoyed, despite whatever hardships you might face.

Keep on keeping on!

Cancer Blogs

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I Still Have Nightmares About Cancer Nearly A Decade Later

I started off this decade with my testicular cancer diagnosis back in February of 2011, so it’s only fitting that I close the decade out in November of 2019 still having nightmares about the whole ordeal. It just goes to show that a cancer diagnosis is something that can affect you for your entire life, even when it’s a “good cancer.”

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I think it was hauling all of these landscaping stones to build our new fire pit that really did me in.

I’ve been working my tail off lately doing a lot of lifting and hauling of things both for home projects and an office move. It’s involved a lot of squatting and lifting with my legs especially, which has once again aggravated my inguinal (groinal) area. On top of having had a few surgeries for cancer “down below”, I’ve also had bi-lateral inguinal hernia repair surgery in this same area, which is a very common issue for big and tall dudes like myself. Fortunately there’s no new issues there, but my body has very clearly been attempting to rip itself in half once again from all of the pain I’ve been having. It can be really disconcerting and feel a lot like “ball pain”, due to how all of the nerves in this area are interconnected. It doesn’t help that I favor my left leg (I’m left-handed) and that this is also the side where I “still have one”. I was concerned enough to give myself a very thorough testicular self-exam and all felt fine, but it also led to a horrible dream.

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I think pretty much every cancer survivor has nightmares about their experiences. We fear day and night that our cancers are going to come back and then having to go through brutal treatments and surgeries again, and then have nightmares about recurrences, too. This was another of the same, the first in a long while, and this time nearly 9 years from diagnosis. A spot in my upper lung had been found in the dream, and all presumptions were that it was a late-recurrence and inoperable due to spread. Late recurrences of testicular cancer aren’t typically responsive to chemotherapy and can usually only be cured by surgical resection. So if something isn’t just a single site or it has spread, the prognosis is usually poor. The writing was pretty much on the wall for me in the dream. This was it — and then I woke up.

The dream was as real as could be, and after I had awoken I wasn’t quite sure what had happened, and what was real and what wasn’t. What was shocking about this nightmare to me wasn’t the dream itself, but rather how I had responded to the news both in the dream and after. In the dream and facing what was pretty much a terminal cancer recurrence, I wasn’t actually afraid. I just had this peaceful and knowing acceptance that something like this could always have happened, and that this was just my time. Yes, it was upsetting to all and wasn’t what I or anybody else wanted, but we don’t have control over things like this, and I had simply accepted that my physical life and existence would soon be moving on.

Life is precious. Anything can happen to anyone at any time, and we have no real control. In an instant life can change and will never be the same again, and here in my nightmare was another one of those moments, this time leading to the end of my physical life. All we really have and have ever had is right now. There’s no guarantees for the future or of our health for anyone, and having to give up on that illusion of control in life as a young and invincible 33 year-old was one of the hardest things I had to do after cancer.

“The best way to survive cancer is to LIVE”. This was the motto that I came up with after spending a year almost literally worrying myself to death after a terrible recurrence scare I’d had the year before, and then fighting hard every day trying to stay one step ahead of PTSD. Just get out there and live your best life, go amazing places, do amazing things, have the best time that you can, make a difference for others, and stop worrying about what happened yesterday and what might happen tomorrow. I've lived my life on this premise for many years now, and each of my years since cancer has been filled with more life than all 33 of them combined prior to cancer. That’s a whole lot of living in this decade, and it’s also helped to bring me peace after cancer. I’ve also come to believe that we’re so much more than our physical existence here in this world, which has helped take the wind out of the sails of my fears of death and of dying as well. We’re all going to die someday. Death is a part of life — it’s simply inevitable, and I’ve learned to stop being afraid.

The worst thing that you can do as a cancer survivor is to just sit around waiting for something to happen. Go take a look at my yearly photo album page above, and you’ll see that we’ve always tried to do the exact opposite of that.

“The fear of death follows from the fear of life.
A man who lives fully is prepared to die at any time.” - Mark Twain

I’ve been talking the talk and walking the walk for years, and now I’m finally dreaming the dreams, too! After I woke up, I wasn’t panicked or hyperventilating, nor was I in tears or disturbed in even the slightest way, and went right back to sleep! I’ve long accepted that I could go at any moment, to the point that bad dreams and nightmares no longer faze me. I suppose if I can have a recurrence scare or a nightmare like this and not even bat an eye, that that's a pretty powerful and evolved position to be in as a cancer survivor.

I won’t lie that time and experience does help, too. I’m almost 9 years out from my cancer diagnosis now. It could be that after having had 500 nightmares about cancer over the years, that the 501st just doesn’t budge the needle anymore. So there’s that, but without a doubt, a lot of evolving and spiritual growth went into all this to get me where I am today. I’m just not afraid of cancer or even dreams about cancer anymore.

Testicular Cancer Blog Archives by Steve Pake

I claim no expertise — I’m just some guy trying to find his way through this mess called “life” and also life after young adult cancer like everybody else, and helping others along the way. Please do give my many blogs about testicular cancer and young adult cancer a read and a share, and maybe they can help yourself and others find your way and make all of this a little easier as well.

Blessings to all and a Happy Thanksgiving!

Steve

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When You Suffer From Post-Cancer Chronic Fatigue But Can Still Bust Out A 30 Minute 5K

Every day that I’ve woken up since cancer, and every moment I’m alive, I feel this low-grade burning and aching sensation throughout my body, and it’s because of the chemotherapy that I went through many years ago. Chemotherapy induced peripheral neuropathy (CIPN) be thy name, and my primary symptoms have always been chronic fatigue issues. It took me nearly two years after my cancer treatments to notice this, long after any pain from treatments and surgeries were gone, and basic physical rehab was completed, that this low grade aching and burning in my body was a “new normal” that wasn’t ever going to go away.

I had a choice of either BEPx3 or EPx4 chemotherapy for my Stage IIB good risk testicular cancer back in 2011. I was seen at Memorial Sloan Kettering Cancer Center in NYC, and was personally in favor of doing the RPLND if I needed one. MSKCC favors the EPx4, which also reduces some of the risk of doing the RPLND surgery because Bleomycin isn’t used, so that’s what I went with. But that extra round of Cisplatin exposure compared to BEPx3 really did a number on my entire nervous system, and there’s not a day that goes by that I don’t “feel the burn”. I’ve just gotten used to it, but long-term studies have shown that testicular cancer patients who do BEPx3 tend to have a lower cumulative burden of morbidity than EPx4 patients, with the extra exposure to Cisplatin being the primary culprit. BEPx3 patients also have a very slightly higher but statistically insignificant cure rate, but it’s always been within the margin for error, so the two protocols have been considered equivalent.

It’s water under the bridge to me at this point, but this is why I generally recommend the more universally accepted standard of BEPx3 for good risk testicular cancer patients, despite having done EPx4 myself. It’s literally a matter of picking your poisons, and with my luck I probably would have been one of the ones that made it into the medical studies with terrible side effects from the Bleomycin drug.

All that matters is that I’m here, so I have no regrets, and what’s done is done.

My Chronic Fatigue has Been a Long road that’s difficult to maintain

I’ve come a long ways. For my first few years after cancer I woke up everyday just happy to be alive, but never felt like I had anything more than a half tank of fuel for the entire day. I really suffered physically in the aftermath of cancer, and emotionally. I “looked fine” but it felt like I had aged several decades, and it was demoralizing barely being able to keep up with my young family. Only I could feel this, and I struggled physically for years.

Related: Running From Cancer

I refused to accept that this was how I was going to feel for the rest of my life, so I took up running and pushed myself hard. I could never run more than a few blocks at a time for years, but my body finally responded and “rebooted” itself, and I’ll never forget the day when the chains came off and I finally managed to do a 5K run in 30 minutes, and without even needing any walking breaks. I was so overwhelmed with joy that I wept for 30 minutes in my back yard and texted a bunch of friends who knew of my struggles all too well. I’ve never been a good runner and probably never will be, but in that moment I finally felt alive and like I had just discovered the fountain of youth, thanks to years of running and pushing myself hard.

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Back in 2015, the day the chains finally came off and a day I’ll never forget!

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Trying to keep myself in good physical condition has always been my weapon against my chronic fatigue issues, but it’s very much a damned if you do, damned if you don’t affair. If I don’t exercise regularly, I’ll fall out of shape and feel like total crap. My energy levels will plummet and a lot of other things can tend to go south. If I do exercise regularly, I’ll be exhausted from working out and pushing my limits. But regular exercise serves to push those limits outwards and helps me to feel better and like I have more energy on average throughout each day. It turns out that keeping my body in “30-minute 5K ready form” is a pretty good fitness baseline for the point at which I’ll feel like I have all the energy I need and almost like a normal person.

Now about maintaining that…

Life Always Seems to Get In The Way

Our lives over the past few years has been crazy and chaotic, with so many twists and turns. We’ve had to take on a disabled family member full-time who has special needs, had to move into a bigger home that needs a lot more upkeep and maintenance, and got a dog just for good measure. I’ve also never been busier at my job, and have never had to travel more for work than I have in recent years, all at the same time. It all adds up and really takes a toll, and also tends to obliterate any attempts at maintaining a fitness routine. The past few years have been a blur, and it’s so easy to completely fall out of exercise and fitness routines or just not exercise at all, but I can’t allow that to happen. Every time it’s the same thing. I’ll feel fine for a few months after not exercising, but eventually my body falls flat on its face, I have no energy, no libido, no nothing, and just feel like a miserable lump.

The first part of 2019 was a great example. Despite a strong start to the year with a great new gym opening just down the street from our home, between March and April I was so busy at work and having to travel so much that I didn’t even make it at all. Between urgent business trips to one place or another, and then back-to-back week long trade shows in different time zones, by the time this busy period was done my chronic fatigue set in so hard that I almost couldn’t move through most of the month of May. I’d never felt so awful in my life, but forced myself to get moving again.

5K RACE TRAINING

It’s been our tradition to make our first beach trip of the year on Father’s Day weekend. We go to Rehoboth Beach, DE, and one morning a few years ago we woke up and strolled outside to see runners everywhere and a 5K race going on! We had no idea, but I had been into running, and William was still pretty young but wanted to race too, so we decided we’d do it the next time we came.

That was last year, but it always seems to be the same thing. A crazy work and travel schedule, and hardly any time to train or get to the gym. In fact, last year around this time I had actually quit our previous gym because it was too expensive and never had time to make it! I had also been traveling so much for work that I’d actually developed bilateral ear infections, so ran last year’s Rehoboth Beach 5K still on antibiotics and a steroid pack, and could only hear out of one ear. William and I both ran in the 32 minute range, but little did I know William was a little sandbagger and had so much more than the pace we had trained at, so this year it was on. :)

My first training run in May was a not too bad 34:24, and then I followed it up with a 33:15, and a 31:31 that I was really pleased with, but then things went downhill with a 32:53. I was struggling and couldn’t progress at all.

Detox Your Life and Get Enough Rest

I came to realize that my body was totally hooked on caffeine and dysfunctional without it, so that was the first thing to go. It was painful, but I went with just water for a week. A disastrous 37:09 run during that time, along with another that I aborted after a mile, serves to illustrate just how powerful an effect caffeine addiction can have on us and how awful withdraw is, but I felt so much better afterwards. I also cleaned up my diet and cut out all of the junky foods, went with a high protein breakfast, and usually a homemade wedge salad or something non-carby for lunch. I’ve always had a low metabolism, and can typically skip dinner and be just fine so long as I eat properly and the right foods during the day. I kept getting into the gym, on the elliptical, on the fitness bike, into a few spin classes and the dreaded stair machine, and also did some weight training. Before I knew it, I was back in business with a much better 31:14 the week before our race that actually felt good to run, and like I had more.

Another thing you can’t overlook is getting enough sleep. Our bodies need rest, and mine especially does whether my chronic fatigue has been acting up or not. Between all of the business travel, bouncing between different time zones, eating terribly and almost literally living on caffeine, and more than one hotel bed that was just plain rotten, massively disrupted sleep patterns and not enough rest was probably the biggest single contributor to my chronic fatigue meltdown the month after all of this craziness.

If you’ve just been through cancer treatments, don’t underestimate how much sleep you might actually need - I needed 9-10 hours per night my first few years after cancer! Turn the TV/computer/phone off, put the books down, and just rest. Even today, I can’t do the 6-7 hours of sleep per night that I could when I was younger, and before cancer. A solid 8-9 hours is what I need, and anything less than that will eventually catch up with me.

RACE DAY AT REHOBOTH

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I wasn’t expecting much on race day not because of a lack of training or a good final run, but rather because of some mild food poisoning or a stomach virus that both my wife and I managed to pick up a day or two before our race. There’s always something! But as the race got going, I felt good, my pace was good in the 9:30 range, and just kept going. William tends to struggle on hills, but if there’s an actual race and his adrenaline gets flowing he takes off like a little rocket ship, and Rehoboth Beach is a flat course so I knew he’d be fast (he’s about 2 minutes faster than me on average).

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William coming into the finish in the 28 minute range! He’s fast!!

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And his old man 2 minutes behind!

I had to take a few very brief walking breaks, but other than that I was stoked with my sub-10 minute per mile pace, and ended with a chip time of 30:24 which was awesome. A 30 minute and change 5K! Hallelujah! And William, who’s only 10, did a 28:05! We were both pooped afterwards, but really pleased with our runs and our times.

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Exercise Can Be a Big Mental Boost

Whether it’s running or any other activity, exercise can be a huge confidence booster when you’ve worked hard and struggled, but then see positive improvements and better results. That’s exactly what I felt getting back into my 30 minute 5K zone, and it’s encouraged me to stick with it and keep going for other races my son and I will do in the fall. Life is way too short to spend it feeling awful. I’m finally close to the state I need to be in, my work won’t be quite as hectic this year (that hasn’t been the case!!!), and our new gym is right down the street, so there’s no excuses for me. Let’s see if I can keep it together this year, finally hit my goal weight, and get a timed 5K run in under 30 minutes. If this big old barge that suffers from chronic muscle fatigue can do it, you can too.

See our full Rehoboth Beach Father’s Day 5K 2019 Race Photo Album here.

Rehoboth Beach Father's Day 5K 2019

William and I ran the Seashore Striders Rehoboth Beach Father’s Day 5K for the second year in a row, and this is our third timed race together. William (10) did great and set a new personal best of 28:05, and I ran a very solid 30:27. We were both really happy with our results, and then proceeded to stuff our faces with all of the delicious food at Rehoboth Beach. We’re going to keep training through the summer for some fall faces to stay on top of our game. :)

When Will I Do More Than a 5K?

People have asked me when I’ll do more than a 5K, and the answer is not any time soon. For starters, I don’t have anything to “prove”. Just being able to do a 5K in 30 minutes or less is a huge accomplishment for me, but there’s not a doubt in my mind that I can do more, and eventually I’d like to do at least a half marathon (13.1 miles) someday. But for someone like myself where the chronic fatigue issues are always lurking, it’s a lot more time to train, and a lot more time away from my family that I just don’t have at the moment. I can disappear and get a quick 5K training run in and nobody will ever know I’m gone, but disappearing for hours on end while doing half or full marathon race training just isn’t in the cards for me at this point. When the time is right, and other demands in life subside enough to free up the time, I’ll make it happen, and you’ll be able to read about it here. :)

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New AUA Guidelines for Early Stage Testicular Cancer

I’m pleased to see that the new American Urological Association Guidelines on the Diagnosis and Treatment of Early Stage Testicular Cancer have finally been published, and it was a great honor to be a small part of this!

Link: https://www.auanet.org/guidelines/testicular-cancer-guideline

Unlike the National Comprehensive Cancer Network NCCN Guidelines for Testicular Cancer which covers all stages and treatments, this new AUA guideline is focused specifically on earlier stage patients up to and including Stage IIB.

As stated in its purpose, “A priority for those patients with low-stage disease is limiting the burden of therapy and treatment-related toxicity without compromising cancer control. Thus, surveillance has assumed an increasing role among those with cancer clinically confined to the testis. Likewise, paradigms for management have undergone substantial changes in recent years as evidence regarding risk stratification, recurrence, survival, and treatment-related toxicity has emerged.”

And with that, these AUA guidelines for earlier stage Testicular Cancer patients were born, at the Johns Hopkins University Evidence-based Practice Center in Baltimore, MD.

Why Early Stage Specific Guidelines Matter

As a Stage IIB patient diagnosed back in 2011, I ended up having to go through the wringer for treatments, and suffered quite a bit in the aftermath from chemotherapy induced peripheral neuropathy pain (CIPN), and from chronic fatigue and pain issues, among other things. I had nightmares about everything I had been through for years, and suffered from PTSD symptoms at times, and other mental health issues as well. To this day, I still experience regular physical - but tolerable - pain that can be attributed to my cancer treatments 8 years ago, which is why I’ve always tried my best to help educate the testicular cancer community about the potential ramifications of treatments, and that the focus shouldn’t just be on getting cured, but to also minimize the potential burden of treatments. These chemotherapy drugs are a miracle and why I’m still here to write this, but they’re no joke as far as potential long-term effects to our bodies and quality of life. We only have one body to make it through our entire lives, and testicular cancer tends to strike younger men who will have to live with whatever permanent effects there might be from treatments for much longer than the typical cancer patient who is diagnosed much later in life. This is why it’s so important to focus not just on achieving a cure, but doing so with as little collateral damage as possible “without compromising cancer control.”

As I wrote in my blog about the RPLND surgery, if I had done that surgery first as the primary treatment, and then followed up with chemotherapy afterwards, I likely wouldn’t have suffered a loss of fertility from the RPLND surgery, because it’s a far easier surgery to do prior to any chemotherapy (which makes preserving the ejaculatory nerves much easier), but I also likely only would have needed half of the chemotherapy and probably wouldn’t have suffered nearly as much of the neuropathy pain and chronic fatigue issues that I did for years. These things have all had non-trivial impacts on my quality of life after cancer in addition to my fertility, and all of that matters to the earlier stage testicular cancer patients who will have numerous decades of life still in front of them in the vast majority of cases.

Presentations by both Dr. Phil Pierorazio and Dr. Lawrence Einhorn at the first Testicular Cancer Summit back in 2017, gave me hope that things were headed in the right directions as far as managing testicular cancer treatments and the patient population. Both “Dr P” and “Dr E” and other amazing doctors present proved through both their words and the compassion the displayed, that they truly understood the lives of their patients and their challenges after cancer. These AUA guidelines for earlier stage testicular cancer patients are a perfect embodiment of their visions laid out for the future of testicular cancer management.

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Hello there! :)

The AUA Testicular Cancer guidelines were authored and then reviewed by dozens of doctors and testicular cancer experts both internally and externally to the AUA. It was a great honor to be one of just three non-MD reviewers of these guidelines, along with my friend and fellow survivor Mike Craycraft from the Testicular Cancer Society, and Sam Gledhill, who runs the Global Testicular Cancer Programs for Movember Foundation. Admittedly, much of what’s in these guidelines were well above my pay grade, but serving as a non-medical external reviewer was an invaluable opportunity to provide patient and survivor community feedback on various issues to the world’s foremost experts on testicular cancer, to which I took full advantage. Just having my name on the same page as Dr. Lawrence Einhorn, the father of the cure for testicular cancer, is a huge honor, and a nice way to cap off my years of advocacy work in the testicular cancer community.

The AUA early stage Testicular Cancer guidelines are written more for medical professionals and are not exactly patient friendly to read, but there’s a wealth of information present in them. For a more patient friendly guide to testicular cancer, check out the National Cancer institute’s guide to testicular cancer (linked below), where they also have a more advanced medical professional version linked as well. The latest NCCN Guidelines for Testicular Cancer are another must read if you’re really serious about understanding testicular cancer treatment paths through all stages, and are available online for free after registration at the NCCN website.

Links

AUA Early Stage Testicular Cancer Guidelines (PDF)
NCCN Testicular Cancer Guidelines
National Cancer Institute - Testicular Cancer Patient Version (Medical Professional Version)

I’m not very active on social media and support groups these days due mostly to a lack of time, but am always happy to talk to anyone about anything related to testicular cancer through my contact link, which will go straight to my phone. Whether you’ve just been diagnosed with testicular cancer and are trying to understand different treatment options, or you’re struggling with life after cancer, I’m always available for the testicular cancer community, even if I haven’t been very visible as of late. Definitely drop me a line! I’m always here.

Thanks again to the AUA Team for the opportunity to serve as an external reviewer of these guidelines.

Best,
Steve Pake

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Why I Don't Give A (Bleep) About Cancer Anymore

I was diagnosed with testicular cancer at the age of 33 and thought my life was over, but today I’m an 8 year survivor of the disease, and at the age of 41 I’m not even a young adult anymore. Times change, perspectives change, we all grow and evolve not just as cancer survivors but in life itself. At this point I just don’t give a (bleep) about cancer anymore. Here’s why.

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Because I’m Not Afraid of My Body

It was only fitting that I spent my 8 year cancerversary back on February 14th with disconcerting pains in my healthy remaining left testicle, but it didn’t faze me. There’s only so many times that you can freak out about “strange pains” in your body until they’re no longer strange at all, and don’t freak you out. As a big and tall guy with a history of bilateral inguinal hernias, and a body that has attempted on more than one occasion to tear itself in half, “strange pains” in this area of my body are a regular part of my life. Only one time out of literally thousands has it ever meant cancer. In my early years after cancer, strange pains like these had me huddling in that corner in tears, but I’m long past that and am just not afraid of my body any more. 

Because Life Moves On After Cancer

The truth is, life just plain moves on after cancer, for better and for worse, in good ways and in bad, and whether you’re ready or not. The painful reality for many young adult cancer survivors is that there’s far more in life that we’re going to have to face, some of which might be just as shocking, painful, unfair, or as horrifying or heartbreaking as our cancer fights had been. Just because you had cancer doesn't meant that life, and its associated drama and messiness, stops happening. Nobody else is really going to care that we had cancer earlier in our lives, nor try to make things easier or roll out the red carpets for us. Not that I was expecting that, but I wasn’t expecting something closer to the opposite either. It’s almost as though the powers that be in the Universe saw how well my wife and I handled cancer together, and then said “hold my beer” while doubling down on us. There are so many things in our lives since my cancer fight that have been unbelievable, unconscionable, and completely unthinkable, and we’ve had to rise to all of them. My life has moved on completely from cancer at this point because I’ve had no other choice but to, with so much else to face in our lives.

The flip side of tremendous challenges elsewhere has been the potential for tremendous growth. It’s been another challenge in and of itself to stay on positive paths in the midst of so much, and never for a minute has it been an easy ride. Learn to let go and disconnect, and to forgive and forget. Your past isn’t happening right now, so don’t let it spoil your future, and never stop living your lives.

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Because I’ve Always Put my Family First

I do work my tail off at my paying job, but I always take all of my “earned” vacation, and never let much if any of it go to waste. Work hard, play harder. As a young adult cancer survivor, I felt for many years that I would never make it to 40, and that I might not have much of a future. Nothing was certain for me - I wanted to enjoy every minute of time with my family that I could, and that’s what mattered most to me. If that means I won’t be considered a “top performer” at my company or will miss out on some promotions because other people are slaving away, working even harder and hardly taking any of their vacation, so be it. I’d much rather have the memories of so many fun times and grand adventures with my family than be the next level or two up in my career. 

I do regret that I’m no longer doing the nonprofit work that I used to do, but that too had evolved into another full-time job on top of a very demanding full-time job and a busy family life, and just wasn’t sustainable anymore. My wife felt abandoned and like she didn’t have a husband anymore, and my children were at the age where they really needed my presence in their own lives, and not in others. I would have found a way to continue what I was doing in the nonprofit world on a much more time limited basis, but suddenly finding myself in the crosshairs of over-sized egos and greed, while being subjected to a barrage of insults and completely false and disparaging comments by the very organization that I had made so many sacrifices of my and my family’s time for was one of the greatest shocks of my life. To be so insulted and falsely accused after all I had done and the huge sacrifices I had made, was a moral red line that never should have been crossed. Anyone with even an ounce of self-respect would have immediately walked away, and that’s exactly what I did.

My family has been supportive of everything I’ve ever done, but enough was enough and the appropriate decisions were made. It’s a shame how easy of a decision it was, but we’ve been through far too much to ever tolerate anyone else’s (bleep). Now my time is spent exactly where it should be, entirely dedicated to my family. My family will always come first, and you’ll never have any regrets when that’s your priority.

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To be here in this moment after all my family and I have been through is the only victory I need.

Because I’ve Lived a Good Life

Truthfully, I really don’t have too much to complain about. I’ve been blessed with the love of a beautiful woman and soulmate in my life for over half of my life. We’ve been together for 23 of our 41 years, which is amazing. We have two awesome kids and an equally awesome dog, and stable jobs that have afforded us a comfortable lifestyle that has allowed us to enjoy the world we live in.

Yes, I had cancer earlier in my life, and there are numerous other aspects of our lives that have been completely (bleeped) up beyond all recognition, but things could always be so much worse. We could be living in Venezuela, where people have nothing to lose risking their lives by rioting in the streets, because their country has been mismanaged into complete collapse and they’re hungry. We could be living in one of the many areas of the world torn by war, terrorism, or totalitarian regimes where people literally have nothing, or have lost everything. Or we could be characters in Game of Thrones. Or maybe I might not have ever found any of what I have. Or I could have died of my cancer.

I’m not going to trivialize the other challenges we’ve had in our lives as “first world problems” because they’re not, and because some of them have been even more horrifying and heartbreaking to deal with than my cancer fight ever was. I’ve come to accept that it’s just life, that it was never supposed to be fair or make sense, and we’ve managed to live a good one with so many great times and grand adventures despite what life has put us through, and we’re proud of that.

We’re very blessed and fortunate despite all that we’ve been through.

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Because I’m Proud of What I’ve Achieved

You don’t need to be a millionaire, have a verified social media account, or have a New York Times best selling book to have made a difference in the world. Young adult cancer and especially testicular cancer is a relatively rare thing, and differences are made on a smaller scale. I’m proud of all of the writing that I’ve done and the difference it’s made for thousands if not millions across the world that have found it in various places, and how its helped them find their ways through their own cancer and life journeys. To serve as a young adult cancer mentor and guide for so many others has been a great honor and purpose to have served.

I’m proud of the Testicular Cancer Summit that I co-founded with Ron Bye, that helped to bring so many survivors, advocates, and experts from across the testicular cancer world together under one roof for the very first time in a way that had never been done before. What an honor to introduce Dr Einhorn at this first Summit, to an audience that for the most part wouldn’t be alive were it not for his work. What an honor to meet so many other testicular cancer advocates from across the country and across the world, and to meet so many people face to face whose lives I’d had a chance to impact in a positive way. What great moments, so many of which all came together at the first Testicular Cancer Summit.

I’m very proud of everyone who helped make the original Testicular Cancer Summit of 2017 happen.

It’s really too bad about what happened after the Summit, that over-sized egos and greed got in the way of such a great thing continuing, the blatant lies, dishonesty, and fraud, that lawyers had to get involved, that bridges were burned all over an event meant to “unite” people, and that the very people I was hoping would most benefit from the event choose to completely betray literally everything I had ever done for them instead. As they say, no good deed goes unpunished. The Summit itself was amazing, despite having become a victim of its own wild success. It was a truly great accomplishment for myself and all involved, the community I continue to serve is far better off that this happened than had it not, and I’ll forever remember and cherish all of those great memories and moments.

Because I Accept the Inevitable, and That Anything Can Happen at Any Time

I accept that eventually we’re all going to die of something, and it could be sooner or it could be later, we just never know. My cancer could come back, or I might get another cancer, or develop some disease or health condition, and I accept that. I just got a really nasty spider bite that was so bad I almost had to go to the ER for it, but what if it was fatal and I had died on the spot? I fly a lot, and don’t think I never think of the possibilities there, either. You just never know what’s going to happen, but there’s nothing that wakes you up more to life’s uncertainties than facing a health crisis very early in your life. I live my best life because I know and accept that nothing is a given, and that anything can change tomorrow.

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Dogs understand something that way too many human beings don’t. Loyalty.

The same unfortunately applies to anyone in your life that you love and care about, extending far beyond just the potential for health issues. Family members, friends, and people that you have dedicated years of your life to and gone to ends of the Earth to support, can suddenly turn on you in an instant and become your enemy tomorrow, for no reason at all. If you have people in your life that you genuinely love and care about today, enjoy their presence today, because it can all change in the next. At this point in my life there’s just not that much that surprises me anymore. It should be of no surprise to anybody that knows us well just how much we’ve come to love our dog, after some of the truly rotten and disgusting human beings we’ve had in our lives.

The bottom line is that great moments in our lives and with others never go unnoticed or unappreciated, because everything in life is subject to change without notice.

Because I Know My Place

As I look back on really the past 10 years of our lives, I’ve long since given up on ever being able to understand of even half of what we’ve been through, far beyond just cancer. It’s been tough enough to find peace with this history of cancer in my life, and there’s been so many other ups and downs, twists and turns, and tragedies and triumphs along the way. I don’t think life is supposed to make any sense, but I know my place and have reset my expectations.

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” - Ralph Waldo Emerson

Life isn’t like the movies.

Often times the biggest difference we make is through a terrible tragedy, and not a great triumph. That euphoric feeling of victory like in the movies is often going to elude us, but it doesn’t mean that no difference was made. Life isn’t like the movies. We also can’t solve other people’s problems for them, plenty of which are experts at creating their own. All too often in our own lives, the best possible way to resolve a problem with someone is to simply walk away, when there will never be a common ground or understanding. True victories in this world are rare. The rest is about survival, making a difference, serving a purpose, and finding ways to be useful, to be honorable, to be compassionate, and to have it make a difference that you’ve lived and lived well. That’s all you truly need to claim a victory, and I have plenty to look back upon there.

I’ve said many times that I’ll never make up some (bleep) about how “I’m glad I got cancer”, but in a strange twist, cancer gave me a way to serve that higher purpose and to make that difference through my own personal tragedies, and for that I’m grateful.

Because My Worst Fears About Cancer Will Never Be Realized

My worst fears when I was diagnosed with cancer weren’t about dying. It was about never having truly “lived”, it was about never having had an opportunity to make a difference in the world, and my absolute worst fear, my children growing up without ever having truly known their father. My children were just 2 and 4 when I was fighting cancer, but now they’re 10 and 12 and getting so big. What a blessing to have been there for them all these years. No matter what happens in the future, no one will ever be able to say that I haven’t lived a good life, that I haven’t achieved anything or made any sort of difference in the world, and that my children never had a chance to know their father.

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My worst fears about cancer will never be realized, and that’s why I don’t give a bleep about cancer anymore. 

Young adult cancer survivors live their lives on a different time scale than everyone else. These past 8 years since my cancer diagnosis have been like a time warp that have flown by so quickly. They’ve been filled with numerous other challenges, but we’ve overcome them all together, and have lived great lives while doing it. I’ve come such a long way and have evolved so much.

As cancer survivors, various flavors of fears, uncertainties, and doubts about our lives and our futures are always going to persist. There’s never going to be a euphoric moment of victory, but managing to outlive the worst of my fears after cancer is a great privilege and about as good as it gets. I pray I’ll be around for many more years and to see many more milestones, but I know that my worst fears about cancer will never be realized, and that’s why I don’t give a bleep about cancer anymore.

StevePake.com

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The Best Cancer Milestones Are The Ones You Hadn’t Thought Of

My youngest turning 10 has been an unexpectedly big deal for me in my cancer survivor life.

I was diagnosed with cancer on February 14th, 2011, just a week before my son, William’s, birthday on the 21st. He was only turning 2 back in 2011, and my daughter, Katie, would turn 4 on April 3rd. They were just tiny little things. I adored them both, but I was absolutely terrified thinking for sure that this was it for me, and that I wouldn’t get to see either of them grow up. Debbie and I had finally settled down together after so much sacrifice and being apart for years. We were finally living our dreams, finally had our own home, finally started the family that we had always wanted, and now cancer was threatening to take it all away and it was all so unfair.

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Here I was, bald as can be in June 2011. I’d just finished EPx4 chemotherapy and was on deck for the RPLND surgery after a week at the beach.

As it turned out, I was lucky. Very lucky. I’d actually had pain in my right testicle that tipped me off that something wasn’t right when a lot of people don’t. That let me catch my testicular cancer at just Stage II, and early enough that I had a >95% cure rate. Make no mistake, there’s no such thing as an “easy cancer”. My treatments and surgeries were brutal, and I went through complete hell to get that cure and in the uncertainty of the years after, but what a blessing to still be here and to see these kids of mine grow up just a bit.

My biggest fear through all these years was neither dying nor a life not lived, but rather not being around for my family, and my children never knowing who their father was. In my darkest days of doubt in the years after when I was being savaged by PTSD, I woke up every morning for a month in tears, and I went to bed every night for a month in tears. Do you know what I prayed for? I prayed, “Please God let me live for my children,” over and over and over again. And I lived, and for whatever reason this milestone feels even bigger than turning 40 did, an age I never thought I’d reach.

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These kids still have a lot of growing up to do, but it’s been a great honor to have been along with them this far, and it’s a great moment and milestone for me both as a cancer survivor and a father. I pray that I’ll continue to be around for them for many more years to come, but having had 10 years with both just feels special in a way that’s painful to explain, because of all the people I know who never had the opportunity. I know that anything could happen tomorrow, next week, next year, or who knows when that could cut that time short, but no time has been wasted, we’ve had so many great times and adventures together through these years, and neither will ever be able to say that they never knew their father.

My worst fear about cancer will never be realized, and that matters to me more than anything in the world. I can’t think of anything better in this moment, and am just taking it all in. I’m so lucky and blessed.

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For William’s 10th birthday, I gathered a collection of our favorite photos of him from the past year. For Katie, I did a special photoshoot of her when she turned 10. You can check out both albums below. You can also checkout William’s 10th birthday blog HERE.

Written in memory of Michael Atkins, Clint Miller, Byard Bridge III, and all of the fathers up in the heavens who could no longer be there for their families due to cancer.

StevePake.com

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World Cancer Day 2019

Testicular Cancer Blog Archives by Steve Pake

It's World Cancer Day once again, and it's just sobering to me when I look back at this huge list of blogs in my archives, over 100,000 words worth, including a few about previous World Cancer Days.

See also:

Cancer Is Not Just Rogue Cells - And Not Just Inside The Patient (World Cancer Day 2017)

World Cancer Day 2016

There's no succinct way to put into words what it was like to have been a 33 year old invincible young adult male with two young kids at home, and then suddenly being diagnosed with testicular cancer and having to fight for my life, and then being afraid for my life in the years after because you never really know if it's truly gone or not. But here's 100,000+ that describe it all!

Over the years I finally taught myself to not allow my past to haunt me - we learn very quickly how fleeting and uncertain life can be as cancer fighters and survivors, but I don't really think about the future much either. I've learned to just live in and stay focused on the present, to enjoy my life and my family as much as possible, and whatever's going to happen in the future is going to happen. Could my cancer going to come back? Could I going to get another cancer? Could something else going to happen? We’ve just learned to expect the unexpected in our lives in so many other ways than cancer, and I don't ask myself questions like these anymore, because the only thing they ever succeeded in accomplishing was to terrify me and cause myself needless anxiety and spoil my present. The answer is yes, and of that could happen, but it might not, and I've made peace with never knowing and have stopped being afraid.

Scrolling down this long list of blogs is haunting and sends chills down my spine, knowing full well where I was when I wrote them all, commonly in tears with a bottle of wine next to me. I just have to remind myself that I overcame it all, and that it's all in the past and not happening NOW. That keeps the PTSD at bay, stops the depression from happening, and keeps me on an even keel. It’s sobering to me that this has been my life, but also sobering to know that so many cancer “survivors” continue to suffer in such ways even decades after their cancer fights. You would be shocked to know how many cancer survivors out there remain trapped in post-cancer depressions, cannot overcome their anxieties nor even post-traumatic stress, and never manage to escape it. It’s no way to live a life, and not so easy to just “switch it off” when much of it is in the realm of our subconsciousness, which we have no conscious control over.

Most every single day, random bursts of shooting nerve pain down my legs and into my feet serve as constant reminders of the hell I’ve been through, permanent side effects of four rounds of Cisplatin based chemotherapy that cured me 8 years ago. This random physical pain is a small burden to carry in comparison to having a clear mind and soul that’s free of the chains of PTSD, and other mental health issues that I suffered from for years after cancer. That was the greatest burden of all, having far exceeded the actual physical fight against the cancer itself, and it’s a challenge of our generation to help show others the way forward to thriving after cancer. It’s why I continue to put myself out there and to share my story as a cancer survivor and a mental health advocate, in the hopes that my words will resonate, and that others will be able to free themselves of these post-cancer burdens as well.

Wishing everyone clear scans and tests, and a happy and healthy 2019!

StevePake.com

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Have I Mentioned How Important Regular Exercise Is for Cancer Survivors?

Actually, I have mentioned how important exercise is for cancer survivors a few times below.

Post-Cancer Fatigue and the Importance of Exercise
Running from Cancer

Regular exercise isn’t just important for cancer survivors but for anybody. My post-cancer chronic fatigue issues were pretty heavy, and the only way to keep my body up and running and to have any energy at all was to push it hard. I don’t think my running story is all that special or glorious, but all things considered, finally being able to do a 5K run in under 30 minutes after years of pushing myself might as well have been like completing a full marathon for me. Some personal heroes of mine, like my friend Jonathan Barr in the UK, kept doing regular 4 miles runs or walks during treatments, and then ran the full 2015 New York Marathon just 10 weeks after EPx4 chemotherapy in only 5 hours and 5 minutes despite being in his 50’s! It was great to meet Jonathan and his lovely wife Lauren who is also a runner at the original Testicular Cancer Summit in 2017. Couple goals and fitness goals all in one!

Don’t miss Jonathan’s amazing post-cancer running story here: Defying All Odds

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Meeting my personal fitness and couple goals heroes, Jonathan and Lauren Barr at the original Testicular Cancer Summit in 2017. This is the guy who ran a full marathon just weeks out of EPx4 chemotherapy!!!! Simply amazing!

Anyways, to say that 2018 was a disastrous fitness year for me would be a gross understatement. A combination of my job being totally out of control busy with numerous fires to put out every single day, and then having a new dog to care for at home left absolutely zero time for exercise. Even if I did have time to exercise, I was approaching 50% travel for work at times throughout the year, all of which continually threw wrenches into developing any sort of fitness routine, and you always tend to overeat or just not eat properly while traveling for work, especially when your company paying. While I managed to do some running and a few 5K races with my son William, who’s 9 years old and kicked my butt both times, in general I felt like total crap in 2018, the pounds piled on, and my energy levels plummeted, and I was back to struggling for every bit of energy I could muster just to get through the work day, with nothing left for anything else.

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Our first Father-Son Father’s Day 5K at Rehoboth Beach, DE will be a new tradition for us. We both did 31 minutes, but William kicked in his afterburners at the end when I was huffing and puffing and beat me by just under 20 seconds!

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For our second 5K of 2019, we did the Rockville 5K which runs right through our neighborhood. I just never had time to really train and did another 31 minutes, but William hauled and did a low-29 minute time. He’s a natural! So proud! :)

A big problem was the fact that the previous gym I was a member of was a 20-30 minute out of the way roundtrip just to get to. If you’re trying to make it to the gym for a solid workout 3-5 times per week, that adds up to over 2 hours of time in the car just getting to the gym and back, which is time I simply didn’t have. I managed to figure out that I did have time exercise, but not time to get to the gym also, so I very sadly discontinued my gym membership and just pounded the pavement with running and walking in my neighborhood, and then quit that too when the weather turned too cold. My neighborhood community center has a decent set of exercise equipment, but with zero ventilation in the room and flickering lights that bring on migraines, it’s truly a miserable experience working out in that small room. I could never commit, and so I fell completely off the fitness wagon for a few months, and of course the chronic fatigue hit me hard.

Luckily for me, a fantastic brand new gym has opened just a few blocks away that’s less than a 5 minute drive for me now, not really out of the way at all, and at a fraction of the cost of my previous gym. I got in on opening day December 31st, 2018, and I already felt a million times better after just the first workout, and after a solid week in the gym I’m already feeling like I’m back to my old energetic self. The fatigue has all but vanished, I’m sleeping better, I have plenty of energy in the morning now, and am no longer struggling for energy at all.

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The new Onelife Fitness in Rockville is fantastic, and just a few blocks away. I’m not endorsing this gym over any other. The best thing about this gym to me is that it’s very close by and I can get to it without losing any time.

It’s funny how our bodies work and how counterintuitive they are. If you sit around all day or never exercise, you’ll feel fatigued and like you can’t move, which discourages you from moving at all, and only makes the fatigue worse! Get your ass into the gym and get a solid workout in, and all of a sudden your body is charged up and you feel like you can conquer the world. Well, maybe that’s a bit of an exaggeration, but it’s a night and day difference for sure.

Check out some photos of the new gym! This place is sweeeeet! The pool will be opening sometime later.

I know it and I’ve lived it, and I cannot allow life or work schedules to interfere with my physical health and getting regular exercise ever again. If I have one New Year’s resolution for 2019, it will be that, oh and lose the 20 pounds I managed to pickup and get back down to my goal weight (again). There’s a lot of “best things” that I’ve done for myself as a young adult cancer survivor and best practices that I can and have passed on, but surely regular vigorous exercise is at the very top. Maybe a lot of people can get by just fine without ever exercising, but I cannot after cancer. Regular exercise is what keeps my chronic fatigue issues at bay, and I can only go so long before my fatigue issues will start to rear their ugly heads again and my body starts grinding to a halt.

You don’t have to run marathons like my friend Jonathan. Just get out there and get moving and do whatever you can do. Your body will thank you for it, and it will be a huge boost in mental confidence as well when you can do just a little bit more each time, cancer survivor or not.

Happy 2019!

StevePake.com

Cancer Blogs

The 7 Year Cancer Survivor Itch

I try to write a little something about my thoughts as a cancer survivor at annual anniversaries or the ending of treatments. I don't really celebrate "all clears" anymore as I elected to stop having annual scans done, although I do need to have an annual "balltrasound" done, which I suppose is the only scan I'll get going forward. I wasn't compliant last year because I've become a "bad" non-compliant patient, but I'll get it done this year. 

Some related previous blogs: 

Five Years And A Day Since Cancer
Cancer Survivorship at Six Years
Top 5 Lessons Learned in Five Years of Cancer Survivorship

Life Moves On After Cancer

At 7 years out, I'm very lucky and blessed that I don't really have to think about cancer too much anymore. There's no reason that I have to, and I don't. Testicular Cancer is a cancer that you fight like hell and either beat completely within a few months or a year, or it very quickly takes you with it. Recurrences and clinically late recurrence are possible, but at 7 years out for someone that had "good risk" disease treated with both primary chemotherapy and the RPLND surgery which was elective in my case, it's far more likely that I'd develop another cancer or have some other health problem, than experience a recurrence of my testicular cancer from 7 years ago. My cancer fight seems like ancient history at this point - a tiny spec in the rear view mirror, and life has moved on.

Full Acceptance of Cancer

I'm not really afraid of cancer anymore because I fully accept that cancer can happen to anybody, at any time, and with no ability for myself or others to ever truly stop or prevent it. There's nothing wrong with me. I'm not cursed or "special" in any way, I'm merely a human being, and cancer is a part of our reality and humanity. Cancer has been around in human beings for far longer than I have, and it will still be around long after I'm gone. What happened to me could just as easily have happened to somebody else, and although it's sad, it's no longer even the least bit shocking or terrifying to me when I learn of friends or friends of friends that have been diagnosed with cancer. Cancer is reality.

Time Not Wasted

Fully accepting cancer into your reality, and realizing just how fleeting and finite our lives can be is what allows you to truly immerse yourself in every moment. It's what makes every moment spent with others that are near and dear to you so precious, because you never know what's next. When I see a friend that I might only see once or a few times per year, I know that it could be the last time I ever see them healthy or alive. It takes our life experiences to another level when moments become so much sweeter. No time has been wasted over these past 7 years, other than time lost to fear and worrying (and there was more than enough of that!). The best way to push back after cancer is to live in the moment and to live your best life every damned day that you have.

Living My Best Life Has Brought Me Peace

I still have my moments when my body is once again doing funny things or I have strange pains, but I'm less afraid of cancer now because of how much I've grown personally and spiritually, and because I know I've been living my best life. I've traveled to some amazing places, and have done some amazing things. I have a beautiful family, a beautiful wife, and some amazing friends that have really been there for me through the worst of times. I'm thankful for all of that, for the opportunity and blessing to still be here at all, and am proud of the difference that I've been able to make for so many other cancer survivors. When I've had scares and dark thoughts recently, I've had reassuring feelings that if this is my time that I've done well, and can rest easy because I have plenty to be proud of and haven't wasted my life away.

Other Things Happen in Life

Honestly, my wife and I have had much bigger problems to sort out in the past few years than my cancer fight ever presented. We don't like drama, drama just finds us, and all of that has been just as exhausting. We've lost family members and friends in tragic and unconscionable ways, have had numerous legal issues to sort out, and have had to take over the care of a disabled adult. We've both been extremely busy at our jobs, and we've both had some pretty serious issues with our workplace environments at times. I've also had to travel for work a lot more than I ever used to which has made managing the family schedule difficult if not impossible, and just for good measure we got a dog too, because our lives haven't been complicated enough. (It's a good thing he's a really awesome dog!!!!!) It's a damned good thing that I managed to settle everything relating to cancer in my mind when I did, because unbeknownst to me, other serious challenges in our lives were right around the corner.

The Goal Isn't To Be Happy

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”
Ralph Waldo Emerson

I'll stop short of saying that I'm "happy" about my cancer diagnosis, because even after 7 years that still doesn't pass my sniff test. The wisdom of Emerson has taught me that perhaps it was the wrong target to be shooting for. I think that if you've faced cancer and can get to the point where it's no longer causing you any unhappiness, and if you've managed to do some honorable and compassionate things with it to make a difference for others while living the best life that you can for yourself regardless of happiness, that that's as much of a positive overall outcome as one could reasonably expect. I have a deep appreciation for my changed life perspective and for all of the personal growth that I've experienced as a cancer survivor, but I've also been terrified out of my mind and sitting in corners in tears more times than I care to remember, and will never again feel secure about my life. I think it's taken striving for and experiencing all of the positive aspects of life after cancer just to reach a neutral buoyancy point to balance out all of the negative. That's fine, and about as much closure as one should expect after cancer.

It's still unnerving that a part of my life story was having to cheat death at 33 when my kids were just turning 2 and 4 years old, but I've been able to walk away from it all as a much better person that I ever was before, it's no longer causing me any unhappiness, and I'm proud of that and in a much better place today. I wouldn't have things any different today, but I don't think I'll ever say that "getting cancer was a good thing", because it just plain wasn't. There's no such thing as a good or easy cancer period.

CLOSURE FROM YOUNG ADULT CANCER

One part life and another part fate have pulled me in different directions these days. I'll never be too far from the testicular cancer and young adult cancer communities and will consider myself an advocate for life, but it's nice to feel the closure that I need to move on and finally start chasing other dreams and aspirations of mine.

It's important to be able to find the closure after young adult cancer, because inevitably there's other things that we're going to have to face in life. Knowing that I had cancer as a younger adult and went through chemotherapy and a few nasty surgeries is just the tip of the iceberg as far as the young adult cancer experience is concerned. Behind these smiles are other 'icebergs' in our lives, other sources of pain, other stories, and other stories behind stories. I plan to start writing about all of these, and not necessarily in blog format, in the hopes that I can heal and move on from these in much the same way that writing helped me to move on from cancer, and perhaps it will in turn help others that have faced similar situations in life (you're never alone, no matter how isolated you might feel.)

What's Next

This isn't my last cancer blog. I actually have a half dozen or so draft cancer blogs on various topics that I intend to publish this year, some of which have been sitting around for ages, but beyond those I consider my cancer blogging to be a done deal. At over 70 blogs and 100,000 words at last count, it's been quite a ride. :-) Most of what I'll be publishing from here on out will be about cross sections of other aspects of our lives, and a whole lot more fun material as well to balance it all out. Never stop believing in yourself, and never stop living your best life no matter what it is that you're facing.

Best,
Steve Pake
Young Adult Cancer Class of 2011

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Does The Burden of Cancer Ever Go Away?

I still remember how optimistic I was when I had reached two years cancer free, thinking that this terrible burden of cancer would be gone, and this huge weight would be lifted off my shoulders. It was a great moment when my oncologist declared me still cancer free, and I sent out a big note of thanks to friends, family, and colleagues that had been there to support me. I thought this was all done, but the truth was, I was still just as afraid of cancer in the weeks and months after my big two years cancer free milestone as I was before, and I was disheartened and continued to struggle in life. I still had anxiety issues, I still suffered from periods of depression due to cancer, and yes, I still suffered from posttraumatic stress as well.

When I reached five years cancer free, I thought that would be the big moment. I didn’t even technically need to be followed by an oncologist anymore, and opted to be “fired” and have what minimal annual checks I ought to have done taken care of by my primary care at annual physicals. I had evolved so much by this time, had found ways to find peace and fulfillment in spite of having had cancer in my life, and release so many of the fears that I had been holding onto. As fate would have it, someone I had cared for so deeply passed away from a late recurrence of his cancer right as I was going through my five year checks and formal discharge from oncology. My friend's late recurrence came seven years after his original fight had ended, and he died nine years after his original diagnosis. How then could I possibly feel truly at peace and at ease with cancer at the five year mark for my own cancer, right as I was preparing to fly out to be by the side of my friend’s family and speak at his celebration of life? If it happened to him, it could happen to me too. Even at five years, the fear never left me.

Turning 40 last year was definitely a huge deal for me, because for years I’d just felt cursed and accepted in my mind that I would never make it to 40, and have lived my life accordingly. I spent most of 2017 as a 39 year old being a little freaked out, as this small part of my mind just wouldn’t let go of this idea that I wasn’t actually going to make it to 40, whether due to cancer, a freak accident or tragedy, or anything else. Turning 40 definitely reset things for me, and redefined my own impossible. For the first time I’ve been able to think about my future as if I might actually have one, this thing called a career, and long-term goals. The burden of cancer, however, remains.

As I celebrated Christmas with my family as a newly minted 40 year old “middle-aged adult”, I couldn’t help but wonder once again, would this be the last one? Strange pains are never a good thing for any cancer survivor, but guess what's common for cancer survivors that have been through harsh treatments and invasive surgeries, guess what's more common in the cold winter months, and as anyone gets older? Yes, strange pains throughout my body, some localized and some spread out, and along with that the fears of my cancer having returned and facing the same fate as my friend, or a second cancer having developed, and all of the worries, fears, and anxiety that comes with that. Once you've had cancer, it never truly leaves you.

Once you've had cancer, it never truly leaves you. Sadly, in the months after I turned 40, I just felt that much closer to the inevitable.

Sadly, in the months after I turned 40, I just felt that much closer to the inevitable, and whatever cancer or disease or terrible tragedy was going to happen next. Not that I was really expecting it, but there was no warm and reassuring blanket of security wrapping itself around me, and telling me that I was going to be okay now. You lose that security blanket forever as soon as you hear the words “you have cancer” and have to learn to live without it. I enjoyed every moment of our 40th birthday celebrations with our family and friends. The smiles and the laughs were all real, and I have the poundage on me to prove we've been eating well. But in the midst of all of this, another round of anxiety and depression from which I’ve struggled off and on with for years because of cancer. It’s a blessing to live in a time where cancers such as mine can be cured, but life is never easy as a cancer survivor, and the burden of cancer never truly goes away.

The way I see it is this. I’ve been blessed with seven amazing years since cancer, and I’ve lived my life so fully each year since, that my cancer diagnosis feels like it was an entire lifetime ago. I know there’s never any guarantees for the future, but if I keep living my life the same way I have been, I’ll have felt like I've lived an entirely new lifetime in the next seven years and will still be considered young by many at only 47. And that's exactly what I plan to do. As we've gotten 2018 vacation plans finalized, it put my mind at ease, because if this is going to be my last year, dammit it’s going to be so amazing, again! This is how I've lived each year since cancer, and it's the only way I know how to live. As I reflect back on my seven years of cancer survivorship and having graduated to middle adulthood, I see a lifetime of so many amazing memories and adventures with family and great friends to look back on, and I’m “only 40”. I’ve lived more each year since cancer than I had in all of my previous 33 years combined before. Whenever the time comes for me to go, there's no question that I'll have lived a rich and full life.

"A man who lives his life fully is prepared to die at any moment." - Mark Twain

It took me a long time to understand this quote by Mark Twain, but I get it now. The burden of cancer never truly goes away, but turn it into a force for good in your life. Live your life positively, love yourself, love others, make a difference in the world, live your dreams, and enjoy every moment of time that you have with your family and friends, and people that truly mean something to you. Appreciate every day, every moment, every smile, every laugh, and every opportunity. When you so immerse yourself in the moment like this, you have a very rich life experience where you don't miss a thing, and you feel so complete. We all have a time and a moment coming where our lives are going to change. I pray I have many more years coming, but knowing that I’m living my life completely and not wasting any time helps to put me at ease when I once again face uncertainty, and I always have a wealth of positive memories to draw comfort from. I live the rich, full, and complete life that I do because of the burden of cancer that drives me. 

The richness in my life, the depth of my experiences, and the force for good that I've turned this burden into far outweighs the occasional pain that I continue to endure from it. I would not have my life any other way.

StevePake.com

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40 And Moving On After Young Adult Cancer

Ever since my cancer diagnosis at the age of 33 in 2011, there's hardly a day that's gone by where I haven't been thinking about cancer. Having just turned 40 years old now on October 27th, that's a whole lot of days spent thinking about cancer! All the way back in 2011 and 2012 in the years immediately after my diagnosis and fight, I tried for awhile to just forget that it had ever happened and to move on. That's what everybody told me to try to do including my own doctors, but that never worked. How could you ever forget that somebody tried to kill you, especially when it was your own body? When it's your ass and life that's on the line at every scan, and every cough or strange pain in your body causes you to worry that your cancer has returned, and that your life will once again be over as you know it, it's impossible to forget. You can never forget that you had cancer.

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Among my biggest fears throughout my 30's as a young adult cancer survivor were the fears of a life not lived, a family not enjoyed, and of the possibility of exiting this world very early without having had the opportunity to accomplish anything meaningful. It's the young adult cancer time warp, where you feel the need to accomplish things at all stages of life at the same time, when you feel like you might not have that much life to live. I've lived my life very well, and I'm proud of all that I've accomplished in my young adult years after cancer. I still have that year to year mentality and probably always will, but having turned 40, I now see my life as being on more of an arc, and that I'm probably past the halfway point of that arc. No cancer survivor ever believes that they're going to live that long.

The natural extension of this are the questions of what else one aspires to do in one's arc through life, and how and when can they make other things happen? There's other things that I've aspired to do that have been on my radar screen for quite a long time, since even before my cancer diagnosis. Some of these things will require just as much passion and dedication to achieve as I've focused towards the testicular cancer community throughout this latter half of the decade of my 30's. I'm not afraid of not having lived my life fully anymore, nor of not having accomplished anything meaningful. Now the fear is of missing opportunities to do other things that I've long sought to do. The Universe works in mysterious ways. I had just been lamenting with a friend that I didn't know when I'd ever be able to make these other dreams of mine happen with all of the commitments I've made in the testicular cancer world, when a little something happened that proved to be just the nudge I needed to move in another direction.

My 40's Will Be A New Era In My Arc Through Life

Today I'm announcing my resignation from the Board of the Testicular Cancer Awareness Foundation, and from all associated roles that I've had within the organization for the past few years. My engagement with an amazing non-profit organization such as this, and the difference I've been able to help make in so many people's lives has been a life purpose fulfilled in so many ways. I'm proud of all that I've achieved for and with TCAF over the years, and if ever I was going to step away to chase other dreams of mine, why not now? 

I'm grateful that TCAF granted me my first official audience for my blogs, and from there my writing has spread to CURE magazine, IHadCancer.com, The Mighty, and The Cancer Knowledge Network, where it's reached hundreds of thousands if not millions of people across all of these platforms. My writing has been a very powerful tool not just for myself, but for others as well. It doesn't matter what type of cancer one has, nor one's gender, age, race, class, or caste. The experience of cancer is very much a shared human experience, and it's been a truly enlightening experience to see how people from all across the world and from all walks of life have been able to connect with my writing.

Among my major projects during my time at TCAF has been the brand new from the ground up TCAF Ambassadors program. This program is unique within the testicular cancer community, and is designed to help support, educate and empower other testicular cancer survivors and co-survivors to get out there and make a difference for others, and to help bring awareness to the public about the cancer that no one seems to ever want to talk about. I look forward to seeing new leadership develop for this program, and for all the good things that I envisioned for this program to continue to become a reality. 

Working completely independently from TCAF, I got together with 40+ year testicular cancer survivor, Ron Bye, whom I had met by pure chance in Singapore earlier that year, to co-found the first ever international Testicular Cancer Summit. I'm grateful that TCAF once again believed in me and chose to support this completely grassroots and individual survivor led and initiated event in having become the primary sponsor and fiduciary for the event. The event was an incredible success, and TCAF did a masterful job of executing our vision. With a special tip of the hat to Mike Craycraft at the Testicular Cancer Society who was also on our planning committee and contributed not one but two of the amazing speakers for this event, Dr. Ajay K Nangia and Sean Swarner, we had a truly unforgettable weekend. 

I hope that the Testicular Cancer Summit is seen as a huge source of inspiration for the testicular cancer community in that you can reach out to this community as an individual when you have an amazing idea, and find the support you need to make your dreams and visions a reality, and for amazing things to happen on behalf of this community. If the 2017 Testicular Cancer Summit ends up being the last and best thing that I've done for this community, then I'm proud to leave on this note and to have that as my legacy.  

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I Will Always Be a Testicular and Young Adult Cancer Advocate

I'm sorry to those that might be disappointed or let down by my decision to step away. I want to reassure everyone that I will always consider myself a testicular cancer and young adult cancer advocate, that my website and my writing isn't going anywhere, that I'll continue to write and advocate on behalf of our community, and that I'll always be accessible to it. I will just do so now on a purely independent basis and in my own time and leisure, and not in formal connection with any organization, such that I'll be free to start chasing other dreams of mine that have long been side-tracked. 

I wish my friends at the Testicular Cancer Awareness Foundation all the best. I'm proud of all that we've achieved together over the past few years, despite the darkest and most challenging of times, and wish you the greatest success in the future. After a grueling few years, I have no immediate plans other than to enjoy a lot more time with my family as the year winds down, to sit on the porch a lot more at our beautiful new home, to get back into the gym a lot more, and to just allow inspiration find me again. Oh, and we're getting a puppy!!! :-) I'll never be too far away.

Best,
Steve Pake

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Approaching 40 as a Young Adult Cancer Survivor

I have 4 draft Facebook page posts, and a half dozen draft blogs on my website just trying to capture all of the thoughts running through my head, and I've finally gotten a handle on what's been going on with this crazy Scorpio mind of mine, as I approach 40 as a young adult cancer survivor.

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My wife has been through just as much in her own journey as I have in mine, but here we are smiling and hand in hand on the boardwalk at Rehoboth Beach back in June. <3

You have to understand that for years and years after being diagnosed with testicular cancer at the age of 33, it was simply accepted in my mind that I would never make it to 40. My cancer would come back, it wouldn't be curable, and I would die. I would never live to see this day, I just didn't know when. It doesn't matter how "good" the cancer or the prognosis is, you always feel like you're going to be the one, and I've seen that happen to people I've cared about. We all fear we're going to be that person, and that's the fear that lives inside of almost every cancer survivor out there.

As I approach this huge milestone, I'm remembering all of those times that I was so spooked and convinced that this day would never come, and missing out on so many life experiences, never growing old with my wife, never seeing my kids grow up, and all of the pain that came along with that. But at the same time, I'm also remembering how I made it through those times, how I overcame it all, and all of the amazing people that I had or found along the way who were able to help me in this journey, and such deep love and gratitude that I feel for so many. 

One minute I'm feeling so wounded from all of these traumatic life experiences of the past, and the next I'm overwhelmed with love for all those that helped me through these dark times. I also have tremendous love for and pride in myself, because I never stopped believing in myself and kept getting back up and trying again, when there were plenty of times when it would have been so easy to just let go. Sometimes I feel all of this, both extremes, all at the same time. When you've been to such a dark place that you've contemplated suicide, you never forget that. And when you find just the right people you need to help pull you out of that, you also never stop feeling the eternal love and gratitude that develops for those people.

Nobody else can see this, only I can feel it, this almost constant Category 4 hurricane of emotion running through this deeply emotional Scorpio mind of mine. It's been a long time since I've been this fired up emotionally about cancer, but fortunately it's almost all good things that I feel. I've long processed all of the pain from this experience of having cancer as a young adult, but I've never really felt victorious. Huge milestones at 2 and even 5 years had both felt so hollow. Even walking out of my oncologist's office for (hopefully) the last time ever last year without a follow-up appointment or any scan orders in hand didn't really seem to register, perhaps because I was on my way to the Celebration of Life for another person I knew that had passed? Now I feel it though, all of it, a victory and an exit to this madness of young adult cancer survivorship. 

A lot of people struggle with turning 40, but I'm feeling nothing but joy towards it. Perhaps turning 40 is the finish line that my sub-conscious mind has had in mind all along. Forget about those 2 year or 5 year clinical milestones - they only mean things to doctors, and never felt like anything to me as a patient. Finally reaching the "big four-oh", the unbelievable, the age my mind had been so thoroughly convinced it would never reach, and leaving behind a very turbulent young adulthood with it. Closure at last? Maybe or maybe not, but at least right now, that's how it's finally starting to feel in the place that it really counts. 

My wife has asked over and over again how I want to celebrate. Part of me wants to throw a huge party, but I've become far too superstitious for that, as if it'd be tempting fate. It will not be too different from past years, a modest cake and some nice dinners out with family and friends that have really meant something to me through this. I always try to do something more meaningful, and under the radar, that makes these occasions more special. Turning 40, it needs to be something very deeply meaningful to me and extra special. I've been thinking about this for a long time, and for my 40th, I finally know what I'm going to do.

StevePake.com

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