Do Good For Others, It Will Come Back in Unexpected Ways
It’s a wonderful feeling when you know that you’ve made a difference for others, and little do these friends of mine know just how much they’ve been helping me, as well. My family has once again been challenged in our lives this past summer, and as we’ve struggled to make sense of things all over again, all I’ve ever needed to do for inspiration and guidance is to look at these friends of mine, almost like a mirror image of my own family, as a reminder of what we’ve needed to KEEP doing.
Feel good Friday, and a true story.
When you finally manage to pull yourself through a really traumatic life experience or period of life, you have this moment of moral clarity where you just know what worked and why, what didn’t work and why, what you needed to do, and how you need to live. I made sure that I captured every bit of that before it faded in my early writing, because I never wanted to feel as hurt as I had been in my life ever again, and this was where my first major essay about cancer survivorship came from, “Steve Pake's Top 10 Guide to Surviving a Young Adult Cancer.” A dear and trusted friend that I had showed an early draft of this to was blown away, and encouraged me to be public with it and to find as broad of an audience as possible for my writing not just because of how powerful she felt it was, but because it applied not just to those facing cancer, but really anyone facing a painful or traumatic period of their lives. I was sure to take my friend’s advice.
My Insta friend Vince, and his wife, Aileen, are different kinds of survivors, and just the type of people that my friend had been referring to. It was so awesome to get such a wonderful shoutout from these friends across the pond upon their reaching a major milestone in their lives yesterday. It’s a wonderful feeling when you know that you’ve made a difference for others, and little do these friends of mine know just how much they’ve been helping me, as well. My family has once again been challenged in our lives this past summer, and as we’ve struggled to make sense of things all over again, all I’ve ever needed to do for inspiration and guidance is to look at these friends of mine, almost like a mirror image of my own family, as a reminder of what we’ve needed to KEEP doing.
Breathe, live well, be well, and never waste a day because life is so precious. Live the best possible lives that you can, without apology to anyone. Glad I was able to inspire, V&A. Congrats on your milestone, and thanks for inspiring right back!! Obviously our paths were meant to cross for a reason, and I’m glad that they have.
StevePake.com
Forgiving Another May Be The Ultimate Act of Self-Love
You have enough to carry on your own. Extra baggage from others shouldn't be included, so let it go. They don't need to deserve it. It's not for them, it's for you. Forgiveness is the ultimate act of self-love.
I've been hurt in my life, badly, by cancer, by life and what it's put my family and I through, and by people we've encountered along the way. Cancer serves as the ultimate reality check, and you find out very quickly who your friends are and aren't. And if ever there ever were a time for family members who have never really seen eye to eye to set aside their differences, you'd think that a health crisis where one is fighting for their lives would be the time, but apparently even that isn't good enough for some. Betrayals, people who you thought were friends but weren't, and even family that damn well ought to have been there for you, but never were. All of this hurts, on top of how badly cancer is already hurting you.
Forgive them all, if not for them, but for yourself. You can't move forward in life in a positive manner, if you allow such painful feelings towards others to bog you down. I'm a damned Scorpio. I literally did not have the word "forgiveness" in my vocabulary, but I forced myself to learn. Why was I still experiencing periods of depression and PTSD even years after cancer? Because I couldn't release this pain that I had inside of me from being hurt, and I feared being hurt again. Love yourself, forgive yourself, and forgive others. Release yourself from this pain. You have enough to carry on your own. Extra baggage from others shouldn't be included, so let it go. They don't need to deserve it. It's not for them, it's for you. Forgiveness is the ultimate act of self-love.
StevePake.com
No Effort Is Ever Wasted
You can put your heart and soul into something for years, towards healing, evolving, learning, growing, forgiving and forgetting, or doing whatever you feel that you need to do to overcome the challenges that life throws at us. It can hurt to have invested so much time and effort towards something, only to have not achieved the end result that you wanted, but this doesn't mean that you've failed.
You can put your heart and soul into something for years, towards healing, evolving, learning, growing, forgiving and forgetting, or doing whatever you feel that you need to do to overcome the challenges that life throws at us. It can hurt to have invested so much time and effort towards something, only to have not achieved the end result that you wanted, but this doesn't mean that you've failed. The fact is, you've grown as a person, you've expanded, and you've become a far better person than you were before. Not one single moment invested in yourself towards becoming a better person, and towards becoming the highest and most self-realized version of yourself that you can be is ever wasted. All of your efforts might not bear fruit in the intended area, but they will in others, and rest assured that the Universe will see to that. You personally will benefit from being a better person every single day, as will all others in your life, and the lives of those that you touch. Your efforts will bear fruit in many other ways. No effort is ever wasted.
No effort is ever wasted. Repeat this to yourself often.
StevePake.com
If You Don't Have Good Intentions, Please Just Leave Us Alone - We're Tired
Many of things that I write about are reflective of challenges faced and lessons learned in years past while overcoming cancer as a young adult, but this one is just as relevant today as it's been in the past. It's not just cancer and all of it's ugly aftermath that I've faced...
Many of the things that I write about are reflective of challenges faced and lessons learned in years past while overcoming cancer as a young adult, but this one is just as relevant today as it's been in the past. It's not just cancer and all of it's ugly aftermath that I've faced, but extremely hurtful and challenging personal situations with people I had considered friends, and that had been a part of my life, and now onto a terrible tragedy within our families that we're still trying to make sense of even months after the fact.
My wife and I are strong. We've been through each other's darkest days and most painful moments, and have loved each other and supported each other through it all. We're better, stronger, more in love, and more committed to each other than we've ever been, but we're also tired. Life has asked quite a bit of us, and continues to do so in the most extraordinary ways. To be a part of our lives, you have to be a force for good in our lives, and nothing less will do. We needed every bit of that when the enemy was cancer, and we still need every bit of that today. If you don't have good and positive intentions towards us, please just go. We love and adore our family and our friends that have been by our sides. Thank you for all of your support.
StevePake.com
Your Story Could Be The Key That Unlocks Someone Else's Prison, Don't Be Afraid to Share It
Writing has always been a huge outlet for me from the earliest and darkest days, and if you can understand something well enough to write about it, you can find ways to overcome it and heal from it as well. It's just in our human nature to hold our pain within, and in essence we create our own mental prisons.
Two friends of mine, both of whom lost sons to testicular cancer, shared this and it's perfect. Writing has always been a huge outlet for me from the earliest and darkest days, and if you can understand something well enough to write about it, you can find ways to overcome it and heal from it as well. It's just in our human nature to hold our pain within, and in essence we create our own mental prisons.
We tend to think we're all alone in what we feel, but the reality is that you're never alone. We're all unique and colorful individuals, but our humanity binds us, and we're all very much the same on the inside. We feel the same exact things, and hurt in the same exact ways. When I've been at my darkest and my lowest, it's neither answers nor even understanding that I've needed the most. Just knowing that I wasn't alone is what made it bearable, and in time, the answers that I needed came to me.
My wife, and even close friends, have seen me in tears from writing about things that have been very painful for me, and they've asked why I write if it causes me so much pain? The answer is that it's not causing me pain. That pain has already been there, and the writing that I do is a way of letting that pain out, so that I can be free of it and won't have to suffer from it any longer. It's been one of life's blessings to see so many people respond in such positive ways to my own writing simply by sharing my life in such a way, and to have been a key that's helped to unlock others from their own prisons and pain. Writing is the single most powerful thing that I've ever done after cancer, not just for others, but for myself. No one fights alone. We can all heal together.
StevePake.com
Do What Is Right, Not What Is Easy
We're creatures of habit. We stick with what we know, even when it might be hurting us, and even when we're broken inside. It's easy to just do nothing and keep suffering, but is that what's right? It's hard to change your ways, to change your lifestyle, to change your friends, your social circles, your routines, your beliefs, your views, and your attitudes, but sometimes that's what we have to do in order to get ourselves out of the holes that we're in, and to ultimately thrive again.
We're creatures of habit. We stick with what we know, even when it might be hurting us, and even when we're broken inside. It's easy to just do nothing and keep suffering, but is that what's right? It's hard to change your ways, to change your lifestyle, to change your friends, your social circles, your routines, your beliefs, your views, and your attitudes, but sometimes that's what we have to do in order to get ourselves out of the holes that we're in, and to ultimately thrive again.
Cancer as a young adult turned my world upside down. It was the storm that tore me apart, and so it makes perfect sense to me now, 5 years later, that almost no stone was left unturned in trying to right my world again. Ask me what I changed in my life after cancer, and the answer is everything, all of the above. Love for my wife and my family, and my desire to live and thrive again, are the only things that have remained constant. Everything else has changed. None of this is easy, and change can be messy and chaotic, but also healthy, needed, and what's right for you. Take the long view to love and care of yourself first. Short-term awkwardness and discomfort from making needed changes in your lives, are well worth the price of admission to the longer term feelings of peace and happiness that doing what's right for you can bring. Do what's right for you, always.
StevePake.com
When The Storm Rips You To Pieces, You Decide How to Put Yourself Back Together Again
It hurts to feel so broken like this, but a perk and right that you have, is that you and you alone get to decide how to put yourselves back together. The who and what, the when, the where, and the how, is all yours to decide, and no one else's.
It was February of 2013, two years after my cancer diagnosis. A friend of mine had just died of his cancer in the months prior, and others had recurrences and were fighting for their lives again. Another friend whom I had identified with very closely was in the last months of his life, with a wife and four young children at home, who would soon be losing their daddy. There were so many bad omens in the world, I had strange things going on with my body, and was scared to death that my cancer had returned. I felt surrounded by Death on all sides, and as though He had me on his radar screen, and that I could be next. I was so distressed about life that I had been crying myself to sleep on more than a few nights. On top of everything else, someone that I had trusted as a friend had betrayed that friendship and that trust in such a terrible way, that I told them not to ever speak to me again. At a time when I needed every last bit of love and support that I could get from friends, I was left wondering who my friends even were.
These are the storms that tear us apart. This was my rock bottom and ground zero, not when I was diagnosed with cancer, nor when I was going through three months of chemotherapy hell or brutal surgeries, but nearly two years later. I was supposed to have been moving on, closing in on my two years cancer free finish line, yet here I was stuck with the brakes on at the starting line. It hurts to feel so broken like this, but a perk and right that you have, is that you and you alone get to decide how to put yourselves back together. The who and what, the when, the where, and the how, is all yours to decide, and no one else's. Love yourself first, take care of yourself first, and do whatever you need to do for you, and no one else. You have the strength to make it through your storm, but you have to put yourself and your needs as your first priority. Love and care for yourself first. Only by doing that, will you be able to love and care for others in your life again.
StevePake.com
5 Years Cancer Free, Now What?
The irony had not been lost on me that, literally, a week after my 5 year oncology follow-up for testicular cancer, that I would be hopping on a plane to attend the celebration of life service for a young man who had died of his cancer after 9. I’d known periods of huge contrasts in my life after cancer before, but none like this. Here I was quietly celebrating 5 years cancer free and finally feeling the closure that I had longed to feel for years, and so much weight being lifted off of my shoulders, yet feeling so humbled at the same time by the death of my friend, while prepping my eulogy speech to deliver at his celebration of life service on July 8th.
The irony had not been lost on me that, literally, a week after my 5 year oncology follow-up for testicular cancer, that I would be hopping on a plane to attend the celebration of life service for a young man who had died of his cancer after 9. Make no mistake, reaching 5 years cancer free and being formally discharged from the care of my oncologist has been a huge moment for me - I only need some limited checks that can be overseen by my primary care during annual physicals now. I’ve finally felt a sense of closure in a way that I hadn’t after Year 2, when every oncologist told me that my odds of a recurrence had basically zeroed out at that point. If that were really true, then why did I continue to need follow-ups through Years 3, 4, and 5? The answer is because although they're very rare, clinically late-recurrences of testicular cancer can and do happen, and are extremely dangerous and terrifying. They typically have a poor prognosis, the odds of survival aren't very good, and they can happen to anybody. This is something that could still happen to me today, and it's exactly what happened to my friend.
My friend who died wasn’t just anybody. His name was Jordan Jones, and he was the son of the Founder and CEO of the non-profit Testicular Cancer Awareness Foundation (www.tcafinfo.org), for which I’ve been blogging for the past few years. Jordan was diagnosed with Stage 4 (3c) Testicular Cancer at just 13 years old in 2007, and his survival back then was a miracle. Jordan lived an amazing life, and the news of his late-recurrence at his 7 year check-up came as a shock to everybody. Jordan fought hard for nearly a year, but there was nothing that could cure him him, and he passed away on June 8th, 2016. I’d known periods of huge contrasts in my life after cancer before, but none like this. Here I was quietly celebrating 5 years cancer free and finally feeling the closure that I had longed to feel for years, and so much weight being lifted off of my shoulders, yet feeling so humbled at the same time by the death of my friend, while prepping my eulogy speech to deliver at his celebration of life service on July 8th.
Balloon release at Jordan Jones Celebration of Life on July 8th, 2016, in Grand Junction, CO.
So what changes in my life moving forward, now that I’m five years cancer free? Ask me when my next oncology appointment is, and for the first time I'll be able to tell you that I don't have one. It feels so liberating in a way that I don't even know how to describe yet. Do I forget all of this, and go back to living my life how I did before? Not a chance. Cancer and the challenges of life after have marked my life in ways that are permanent, and I've had to evolve in ways that are permanent in response. There's no going back.
A cancer diagnosis as a young adult is a very deeply traumatizing experience in that it strips us of every sense of security that we might have had about our lives, our health and supposed longevity, and our futures and if we'll even have one anymore, all during the period of our lives when we're supposed to feel invincible. The cold hard truth is that I've never regained even a single bit of this shattered false security back at any point in the past five years. That tree burned to the ground and was never going to come back to life, but a new one did start growing right beside it, out of the ashes.
I've gained a new sense of security over these years by learning to live fully in the moment, and by never wasting a day. People who know my family and I well know that we're always going places, doing things, and having a great time on our own and with friends. We can never know how many days we have, or if our cancers will come back or not. Living my life fully in the present each day, helps me feel secure in that I'm not wasting my days or my life. Life is short, live it well. I've also found a sense of security from all of the writing and cancer advocacy and outreach work that I do. It's a purpose fulfilled, and a way to give back to humanity and a community that I couldn't have been without. Lastly, just in the past year, a newfound sense of spiritual security has finally taught me how to stop being afraid of death and dying of cancer, and how to live my life for the first time without these fears continuing to haunt me. These three things, living life fully, finding and having a purpose, and a strong sense of spirituality, are what provide me with that inner security today that we all need. It's a very different sense of security than what most people have, and a far different way of life and living than most, but such is the life of a young adult cancer survivor.
One last beach trip. Living life fully, Virginia Beach, VA, September 2016
I fully expected to feel the closure that I do today after just two years rather than five, but never did. I even sent a big message out to friends, family, and colleagues at the time, thanking them for all of their support after I reached two years cancer free, thinking this was finally over, but I was still just as afraid in the months after as I was before. Surviving cancer can be a long journey. You'll feel closure and a sense of having moved on when you were meant to feel it, and when you're truly ready. I'm so grateful to finally feel that closure today. It's all of the changes that I've made in my life, and all of the ways in which I've evolved past cancer, that have finally allowed me to feel this. It didn't just happen by itself - I've been working hard at it for years, and it's bittersweet to finally feel it.
So what changes? How do I live my life going forward? The answer is that I keep living exactly as I've learned to live in the aftermath of cancer. As I wrote in the eulogy speech that I delivered to 200 of Jordan's friends and family at his celebration of life on July 8th, Jordan and the Jones family inspired me as a cancer survivor not just for their incredible story, but by how they lived their lives in the aftermath. They never wasted a day and lived their lives at full speed ahead exactly as I have, and found purpose in their non-profit organization which has reached millions worldwide, for which I've been both proud and grateful to have continued to be a part of. And the same sense of spirituality that helped Jordan and his family find comfort in the time of their great loss, is the same sense of spirituality that's helped me to finally overcome my inner fears of cancer once again re-entering my own life, and to finally live my life fearlessly.
"When it's my time to go, if I can look back on my life and feel as though I've accomplished even a fraction of what Jordan and the Jones family have, I think I'll have that same feeling of peace and fulfillment in life. Jordan will forever be my hero for not just inspiring me by how he lived, but by showing us all how to die with grace and dignity, and with the confidence of a life purpose and mission fulfilled.
Jordan will continue to drive me and inspire me for the rest of my life. I'm a big dude, 6'3" tall and I wear size 15 shoes, but Jordan's footprint in this world is immeasurable. I have a lot of work to do. We all do."
Rest in Peace, Sunshine.
Dedicated to Jordan Paul Jones, November 8th, 1993 - June 8th, 2016.
Your life is made up of two dates and a dash. You have no control whatsoever over the two dates, so just make the most of the dash.
StevePake.com
Anything That Costs You Your Peace Is Too Expensive
Being diagnosed with cancer at the age of 33, robbed me of every bit of peace and sense of security that I had. Every bit of my life, three decades of hard work, and all of my hopes and dreams with my wife and two young children were suddenly up in the air every month, dependent on that next round of scans coming back clear, and no new evidence of disease. Anything external to this terrible life experience that was costing me on top of that, was just too expensive for me to keep around, period.
Being diagnosed with cancer at the age of 33, robbed me of every bit of peace and sense of security that I had. Every bit of my life, three decades of hard work, and all of my hopes and dreams with my wife and two young children were suddenly up in the air every month, dependent on that next round of scans coming back clear, and no new evidence of disease. Cancer stripped me bare, leaving me feeling naked, and vulnerable. It's tough to convey in words just how distressing such a life experience can be unless you've been there in some way, and you just know.
Anything external to this terrible life experience that was costing me on top of that, was just too expensive for me to keep around, period. I needed to be able to look you in the eyes, to peer into your soul, and just know that you were right for me, and the right soul to have in my life at that time, no exceptions granted. I had to push people away that I actually loved and cared about, because when you have a scan coming up, and there's strange things going on in your body, and you have two young children at home, I have neither the time nor the energy to worry about you, what you meant by that, your intentions, or anything else. There can't be any questions. Something or someone has to either be able to bring peace to my life, or be something that can help me find it myself. Nothing less would do. If you weren't something like that to me, you simply had no place in my life at the time. It doesn't mean that I didn't love you, it doesn't mean that I didn't care about you, or that it didn't hurt to say goodbye.
Ridding my life of negative or toxic influences helped cleared the way for others that could help buoy me, and help me find peace in my time of need. I needed to be saved, but you have to be willing to save yourself first.
StevePake.com
Related: When Facebook becomes toxic: "I Miss When People Just Posted About Cats"
One Of The Most Courageous Decisions You'll Ever Make Is To Let Go Of What Is Hurting You
t's bad enough to have sources of pain in our lives as it is, but cancer will push you far beyond your limits, without mercy. It doesn't matter if it's a thing, a belief, an attitude, or a person that's hurting you. You have to put yourself first, love and care for yourself first, and find the courage to let go of other sources of pain in our lives.
It's bad enough to have sources of pain in our lives as it is, but cancer will push you far beyond your limits, without mercy. It doesn't matter if it's a thing, a belief, an attitude, or a person that's hurting you. You have to put yourself first, love and care for yourself first, and find the courage to let go of other sources of pain in your lives. We're creatures of habit. We stick with what we know, even when it might be causing us tremendous amounts of pain. The lowest point of my life came when I had been in so much pain from cancer related demons inside of me, that I had contemplated suicide as a means to an end. That was the wakeup call that I needed, and the point when I gained the courage to clear the decks, because I was dying inside spiritually, and needed to save myself.
I've told people that I had genuinely cared about to not ever speak to me again, because they had been hurting me, and have quietly walked away from or distanced myself from others. I've uprooted beliefs, attitudes, and philosophies about life, and have developed entirely new routines, and new friendships. There isn't much that I haven't changed in my life since cancer became a part of it. I just wanted to be happy again, and to find peace. I might look similar on the outside, but I'm an entirely new person on the inside today. It takes courage to confront cancer, and it takes even more courage to make so many changes in our lives in response. After years of continually evolving, letting go of the old and embracing the new, I've finally found that inner peace and happiness that I'd been in search of for so long, five years after my cancer diagnosis.
Evolving takes not only courage, but time as well.
StevePake.com
Soulmates Aren't Always About Love
Soulmate friends are people that can just connect with me and get me in a way that others don't, or those that are a perfect complement and have been exactly what I've needed them to be. They're people that have helped me understand myself and grow, and those that have helped me laugh, forget, and heal.
How lucky and blessed am I to not just be married to an incredibly beautiful woman who is a soulmate to me in every sense, but to also have friends in my life who have been soulmates as well. Soulmate friends are people that can just connect with me and get me in a way that others don't, or those that are a perfect complement and have been exactly what I've needed them to be. They're people that have helped me understand myself and grow, and those that have helped me laugh, forget, and heal.
I've felt very soulful bonds towards both male and female friends through these years of struggle after cancer, and some of those friends just happen to be very beautiful women as well. I've been hesitant to write about just how powerfully I've felt towards friends like these, because I've feared it being misinterpreted as romantic or sexual in nature by those who have not known the terrible darkness that I have, and the light that these friends represented in my time of need. It's not about gender, or faces, or bodies, or sex. It transcends all of that, and is the deepest and most soulful love and appreciation that one can have for other beautiful beings of this world, who just happened to appear and be exactly what you needed, at the precise moment that you were most in need.
I was so lost for awhile. These friends of mine helped me to become found again. There is no greater love and appreciation that one can have, and it is a great blessing to feel this energy and influence in my life every day.
StevePake.com
Life's Short - Spend It With Friends Who Make You Laugh and Feel Loved
As a cancer survivor, I've felt so afraid, threatened, and vulnerable, and that my time might be cut short. It's been so important for me to make the most of every moment, and to spend time with those that just help me feel good, that can make me laugh, and help me forget.
As a cancer survivor, I've felt so afraid, threatened, and vulnerable, and that my time might be cut short. It's been so important for me to make the most of every moment, and to spend time with those that just help me feel good, that can make me laugh, and help me forget. Cancer raised my bar for friendship through the roof. I need to feel good vibes and positive energy from everyone that I spend time with, and nothing less will do. Cancer flipped my entire world upside down, and part of righting my life has been making a lot of changes in social circles, and with whom I consider to be my friends.
There are those that quietly disappeared from my life, as soon as the words "I have cancer" were mentioned, others who should have been there but weren't, and those whom I cared for or might have even loved, as friends, but just weren't the right people for me, or that I didn't get the right energy from. It's painful to say goodbye and to make changes like these, but cancer is a painful life experience for which you need the strongest support. We have no control over cancer entering our lives, but we do have control over whom we choose to surround ourselves with.
Find the best people for you. They'll make all the difference in the world.
StevePake.com
PTSD and Suicidal Thoughts
This morning, my wife asked me if during my darkest days of PTSD, I ever had thoughts of killing my entire family. No. Never. There's a terrible story in the news, one of those murder/suicide "family delete" type tragedies, where a woman had been suffering from PTSD and possibly other things, stemming from a health crisis in one of her young children.
This morning, my wife asked me if during my darkest days of PTSD, I ever had thoughts of killing my entire family. No. Never. There's a terrible story in the news, one of those murder/suicide "family delete" type tragedies, where a woman had been suffering from PTSD and possibly other things, stemming from a health crisis in one of her young children. I know that it was a little more complicated than that, but the woman was getting help, seeing a therapist, and was on a common type of anti-depressant drug, but still allegedly killed her husband, her three young children ages 2 to 8, and then herself.
At my absolute lowest point, I was so distressed and afraid that I had contemplated suicide, because I was hurting so badly inside, and didn't know how to stop hurting. A friend of mine had just died of cancer, and others were dying, or having recurrences. I had a terrible cancer recurrence scare myself, and just felt like I was next. I felt doomed and threatened constantly, and just wanted it to end. I knew that suicide wasn't the answer; I had too much to live for, but I was terrified of my cancer coming back, and couldn't bear the thought of having to break such news to my family, having them watch me go through this hell all over again, and possibly having to watch me die a very slow and painful death from it.
At my worst, I just wanted to be driven out to a field in the middle of nowhere, where no one would ever find me, because I was so spooked and convinced that my cancer was going to come back, and didn't want to hurt anybody else when that happened. I didn't want my children to see their daddy die. I felt so worthless and like a huge liability to my family, and just wanted to be abandoned. I was never a threat to anybody. That was the end of 2012 and the beginning of 2013, and it took me all of 2013 to recover from that and get myself on a more even keel again, and a full recovery from PTSD didn't actually come until late-2015. I don't miss those times, but I do remember them like they were yesterday. You can't ever forget it.
When I hear a story like this in the news, it's like driving a knife into my soul a bit, because I understand pain like this all too well, and I'm so sorry to see a tragedy like this take place. It's a bit haunting as well, because I had been down to my last frayed thread of sanity. I was a completely shattered and broken person inside. I didn't "snap," bit it wouldn't have taken too much to have done so, and to have been that close still hurts to think about, even many years later.
I'm not going to read about this story (I can't), and so I'm not going to assume anything or cast judgement on anyone. The only thing I'll say is that I'm sorry that the help this person found wasn't ultimately successful in helping them through such a distressful time in their life, and in averting a tragedy like this. It was a perfect storm of internal and external elements in my life, including my own inner demons, that formed to break me. Why am I still here today, and why am I so grateful to so many? Because it was also a perfect storm of love and support that helped to pull me out of such a terrible period in my life. I either already had everything that I needed, or very quickly found it. Love and support from my family, the right friends, the right mentors, the right outlets, and on and on. It's not cancer that truly changed me as a person, but rather the PTSD that I experienced after cancer that did. Key to my post-cancer and post-PTSD survival has been the fact that no stone was left unturned, and that I changed almost every aspect of my life. I adopted new attitudes, new beliefs, new routines, new friends and social circles, and new everything. Cancer and especially PTSD turned my life upside down, and so it makes perfect sense that I had to flip everything in my life over in order to get things oriented in the proper direction again..
Two things that were never involved in my PTSD recovery were therapists, nor any sort of drugs. A big problem that we have as cancer survivors is the lack of people out there who truly get what we've been through, and the terrible things that our minds are telling us, besides other cancer survivors. Even oncologists who treat cancer patients for decades, who are then diagnosed with cancer themselves later in life, have admitted they had no idea what their patients were going through until the tables were turned, and they became the patient. A therapist was certainly an option for me, and I'm not saying they're wrong or that it's the therapist that failed the patient in this case, but I simply didn't trust a therapist to be able to handle ME. It doesn't help that I'm a Scorpio, and that my mind is already a very complicated and turbulent place, and that it already takes quite a bit for us to trust anyone. A therapist just wasn't the right option for me. And every drug I had ever taken for managing various post-cancer issues always had far worst side-effects for me than whatever relief they were supposed to have provided. I'm not saying that they're wrong or to blame either, but when it came to an anti-depressant for me, which I arguably ought to have been on at various points, it was just another non-starter.
No therapists. No drugs. This definitely wasn't easy path to have taken through all of this, and it was arguably very risky as well. We all have to find an approach that will work for us and that we can place our full trust in, but you can overcome depression, PTSD, suicidal thoughts, and the existential crisis that life throws at us without such things. There are other ways to do this. I can check all of those boxes, but I've only grown through all of this, and am spiritually sound today. I want people to know that it's possible, and that I'm living proof of it.
National Suicide Prevention Lifeline - 1-800-273-TALK (8255)
StevePake.com
[Note: The facts of the mentioned case came out, and it turned out that the woman's husband apparently did it. This is still a relevant topic to discuss and figured I'd write about it, since it came up, but I'll rework this blog a bit later.]
You're The Author Of Your Life
You're the author of your life. If you're not happy with the chapter you're in, you alone have the power to write something new.
You're the author of your life. If you're not happy with the chapter you're in, you alone have the power to write something new.
We can't change the fact that we had cancer, but we can change so many other things in our life in response. We can change our attitudes, our beliefs, our religious views, our spiritual views, our political views, how we approach our day and our daily routines, our hobbies, whether we exercise or not, our diet, who our friends are and who we associate with, what we do at night, what we do on the weekends, and so many other things. Now, ask me what I've changed in response to cancer and all of its ugly aftermath in order to thrive again? ALL OF THE ABOVE. No stone has been left unturned, and I have changed practically every aspect of my life in response to cancer.
How would my life be today had I not evolved and made so many changes? Not in the GOOD place I've made for myself today, that's for certain. Cancer changes every aspect of our lives. You have to makes changes in your lifeto evolve beyond it.
StevePake.com
Don't Count The Days - Make The Days Count
"Don't count the days. Make the days count." - A couple of years ago, I couldn't stop being afraid of cancer, and every morning I woke up so afraid. I had to teach and allow myself to let go of trying to know and worrying about what might happen tomorrow or next month.
"Don't count the days. Make the days count." - A couple of years ago, I couldn't stop being afraid of cancer, and every morning I woke up so afraid. I had to teach and allow myself to let go of trying to know and worrying about what might happen tomorrow or next month. I was so spooked and felt like it was inevitable that my cancer was going to come back, and that my days might be running short. I stopped counting the days, and made each day count. 5 years since cancer, and 3 years since PTSD became a part of my life, and it's been full speed ahead and no looking back ever since.
StevePake.com
Cancer Wasn't In My Life Plan
I was never going to get cancer. It just wasn't in my life plan. Young adults don't get cancer, only older people. Even when young adults do get cancer, it was only something that happened to other people, not me. A medical school friend of my wife's died of a young adult cancer while only in her early-20's, and just a year shy of graduating from medical school and becoming a doctor. It was so sad and tragic, especially after so much hard work, but it still never registered in my mind that this could happen to me, until I was diagnosed with testicular cancer at the age of 33. Cancer wasn't ever in my life plan, until suddenly, it was.
I was never going to get cancer. It just wasn't in my life plan. Young adults don't get cancer, only older people. Even when young adults do get cancer, it was only something that happened to other people, not me. A medical school friend of my wife's died of a young adult cancer while only in her early-20's, and just a year shy of graduating from medical school and becoming a doctor. It was so sad and tragic, especially after so much hard work, but it still never registered in my mind that this could happen to me, until I was diagnosed with testicular cancer at the age of 33. Cancer wasn't ever in my life plan, until suddenly, it was.
After my cancer fight, I was just going to bounce back to life like everybody said I was going to, and settle right into that "new normal." I wasn't going to suffer from chronic fatigue issues for years due to the after effects of chemotherapy and chemotherapy-induced peripheral neuropathy. I also wasn't going to have to walk around with an extremely uncomfortable stent for six months, trying to save a failing kidney. I also wasn't going to have terrible issues with anxiety, with depression, and with post-traumatic stress. I was just going to pop back to "normal" after cancer, as though I merely had a really nasty case of the flu. I couldn't keep up with my children, and my body felt like complete hell and as though it had aged 30 years. I was in tremendous amounts of pain on a daily basis, and my mind was a total wreck. None of this was in my life plan. This wasn't the life that I had expected, nor was it the life after cancer that I had expected, either.
Cancer threw so many unexpected challenges my way. I rose to all of them.
My chronic fatigue after cancer was so bad, that I barely had the energy to make it through the day most days. I couldn't run more than a few blocks at a time without my entire body shutting down on me, but I forced myself to keep going, kept pushing myself, and never gave up, until one day the chains came off. Suddenly, I could run a full 5K after years of trying, and then the unthinkable happened when I was actually able to run a 5K in under 30 minutes! This is a very basic starter running goal, but for me, dealing with so much chronic fatigue after cancer, it was the holy grail, and today I have all of the energy that I need.
My mind needed to heal as well. I was haunted by the past, and terrified of what might happen in the future. I slowly learned to let go, to stay engaged and focused in the present, and to enjoy each and every day that I had. Despite my best efforts, my post-cancer demons still managed to find ways back into my life, but I learned to evolve spiritually and to develop faith as the ultimate way of overcoming. I'm no longer afraid, I have no anxiety, and no longer any depression or posttraumatic stress that kept dragging me down. I'm not afraid of death and dying of cancer anymore, and that allows me to live my life fully. I've evolved in so many ways in just a few short years, and have finally healed both mind and body through so many struggles.
There are no limits to what we can achieve, so long as we believe in ourselves. We can accomplish anything that we set our minds to, we just have to believe. Attitude is everything, and is a self-fulfilling prophecy. No matter what it is that you’re facing, if you believe in yourself with all of your heart and soul and believe that you’ll find a way to cope, to heal, or to overcome, you’ll find that way no matter how difficult. If you don’t believe in yourself, not only will you not find what you need, but you’ll prolong your own suffering and pain.
Never give up, and never stop believing in yourself. Keep your hearts and your minds open, and surround yourself with positive and uplifting people that believe in you too, who can help to carry you during the times you might stumble.
Cancer wasn't in my life plan, but I've made a far better one now.
StevePake.com
Jordan Jones Legacy - A Survivor's Eulogy by Steve Pake
We're all beautiful beings inside that have something unique to offer the world. Evolve yourself beyond the stereotypes and societal expectations, and have the courage to express your individuality into the world and make a difference, because the world needs it. Jordan's nickname wasn't "Sunshine" for no reason. Despite what he had been through, even while fighting through his late recurrence, he always found a way to shine. We all need to follow Jordan's example, and do the same.
I started writing and blogging at the Testicular Cancer Awareness Foundation back in 2014. Kim Jones (bottom right) founded this non-profit out of her home in 2009 after her son, Jordan's, testicular cancer diagnosis in 2007, at the age of 13. Jordan had very advanced stage testicular cancer, and was very lucky to beat his cancer the first time, but miraculously recovered. Jordan lived an amazing life, but his cancer tragically returned in 2015, just short of seven years after he had beaten it the first time. He fought for a year, but there was nothing to stop it, and Jordan left our world on June 8th, 2016. He was just 22 years old. I traveled to Grand Junction, CO for Jordan's Celebration of Life, and delivered this 10 minute long eulogy on behalf of Jordan and the Jones family.
Cross-posted from the Testicular Cancer Awareness Foundation. To see more tributes and eulogies to Jordan Jones, please visit the Jordan Jones Legacy project page.
My name is Steve Pake, and I am from the Washington, D.C. area. I'm a five year survivor of testicular cancer, and since 2014 have also been the main blogger for Kim Jones at the Testicular Cancer Awareness Foundation. Whenever I've had very difficult feelings to process, I've always taken to my writing as a way to express those feelings, so I have, of course, written a blog about Jordan here, which I'll share with you now.
As a cancer survivor, I'll tell you that the story of Jordan Jones is the one that all of us, every single one of us cancer survivors fears. It's the fear that we'll be back to life and back to living, only for cancer to once again rear its ugly head many years later, that it won't be curable, and that all of a sudden we'll have just lived our last good and healthy day. Oncologists love to joke that testicular cancer is the most curable cancer, and that the second most curable cancer is a recurrence of testicular cancer. They say this to try to put us at ease, but I've yet to find any one that's been diagnosed with testicular cancer that's ever been truly comforted by these words. There is no easy cancer, and in the context of a late recurrence of testicular cancer, as Jordan experienced, this isn't even true.
Late recurrences of testicular cancer are exceedingly rare, but typically have a poor prognosis, and usually don't respond well to chemotherapy. Although Jordan did actually get a "very good" response from some of the therapies that he received, nothing less than a "compete response" will do, because testicular cancer is both aggressive and relentless. It's true that late recurrences of testicular cancer such as these do occur a bit more frequently to those who had very advanced stage cancers initially such as Jordan, but the fact is they can happen to anybody. This could happen to me too, and this is a risk that all of us face, but never in a million years did I ever dream or imagine that one day I would one day be standing right here, right now, to say a few words on behalf of our friend.
So how do you make sense of all of this, and how do you move forward in life? The answer is that you have to evolve.
EVOLVING INTO A NEW LIFE AFTER CANCER
My years after cancer didn't go exactly according to plan. I had issues with anxiety, my mind was constantly racing. I suffered from tremendous doubts about life, and periods of depression that could last months. I also suffered from posttraumatic stress, and not the kind that people joke about having either, if they maybe had a near-miss in traffic somewhere? I'm talking about real, full-blown, huddled up in a corner in tears PTSD, because you're so afraid and feel so threatened after cancer, and don't know how to stop feeling that way. This was more challenging to deal with and overcome than my cancer was.
I was terrified of what might happen in the future, and haunted by my past, and as a result I was unable to truly enjoy the present. I learned that I had no real control in life, and taught myself to let go, and to just enjoy the moment. As I wrote a few years ago, "The best way to survive cancer is to LIVE!" Live, love, and laugh everyday, the best you know how, and it was from that point forward that I finally began to heal. It was around this time in 2013, two years after my cancer fight, that I connected with Kim, and learned of Jordan's story. I was inspired not just by their incredible story, but by the lives that they were living in the aftermath.
Here was a family that was clearly engaged with each other, enjoying life, enjoying their love for each other, and their friends. They were making the most of life and not wasting a day, and I thought to myself, that's how you need to live, that's how you need to do it. This is how you need to live after cancer, and I immediately felt a kinship and a bond with the Jones family. It's not just Jordan who inspired me, but the entire Jones family that did.
You Have to Find a Purpose in Life
Especially as young adults, we go from thinking that we have our entire lives in front of us, to realizing just how fragile and mortal we all are, and that we might not be around in this world for as long as we thought we were going to be. So many of us want to make a difference, and suddenly we feel rushed to find a purpose in life in order to make that difference, when we feel that our time might be cut short, and that our lives might be on a short clock.
Jordan and the Jones family found that purpose when Kim gave up her real-estate career to start the Testicular Cancer Awareness Foundation, and through this organization they've helped to raise awareness about testicular cancer for millions across the world, and have helped to save thousands of lives simply by spreading knowledge and awareness about this disease. There are naysayers everywhere. Don't listen to them. One person, and one family can make a difference in the world, and Jordan and the Jones family are a prime example of that. So ask yourself, what can you do? Find your purpose. What difference can you make in the world for the better?
I'm actually an engineer. I have a Masters Degree in Electrical Engineering, and work to this day as an engineer, but I can write my heart out too. I'm not supposed to be able to do that, and I know this because people tell me that all the time. I've always known that I've had this ability, and years before cancer entered my life I decided that I really needed to put this talent to good use in the world, but didn't know what to even write about. Life provided me with the answer, and today my writing about life after cancer and all of the struggles that we face have been seen by hundreds of thousands of people across the globe. I'm the last person that anybody would suspect of being able to write about what I do, pouring my heart and soul out like this, but I am what I am, this is something that I can do, and it's an amazingly fulfilling feeling in life to be able to add this to the world.
When I put this inner talent to good use in the world, I feel like I'm not wasting any time, which is so important to me. I've been blessed with five amazing years since cancer, but that's still no guarantee of a sixth or seventh. There are other non-profit organizations focused on spreading knowledge and awareness about testicular cancer both in the United States and abroad, but I felt clearly like TCAF was my home and that I belonged here, and I've been very grateful and honored for Kim and the Jones family to have welcomed me in, to have found a fitting home for all of the writing that I do, and for allowing me to be a part of such a wonderful organization.
We're all beautiful beings inside that have something unique to offer the world. Evolve yourself beyond the stereotypes and societal expectations, and have the courage to express your individuality into the world and make a difference, because the world needs it. Jordan's nickname wasn't "Sunshine" for no reason. Despite what he had been through, even while fighting through his late recurrence, he always found a way to shine. We all need to follow Jordan's example, and do the same.
Making the Ultimate Step, Beyond Ourselves and our Bodies
Our lives consist of two dates and a dash. There might not have been very much time between the two major dates in Jordan's physical life, but Jordan, more than anybody I know, made the most of that dash in between. The late Stuart Scott said it best.
"WHEN YOU DIE, IT DOES NOT MEAN THAT YOU LOSE TO CANCER.
YOU BEAT CANCER BY HOW YOU LIVE, WHY YOU LIVE,
AND THE MANNER IN WHICH YOU LIVE. SO LIVE!"
I don't ever want to hear anybody say that Jordan "lost" his cancer fight. Jordan beat his cancer, and he lived better than anybody else. He made the most of that dash!
In the end, Jordan made the ultimate evolution by not just inspiring me by how he lived, but by how he died as well. In his last days, Jordan made the final leap beyond his physical world when he realized the significance that his life, and his death, would have. He knew that he and his family, and the organization that they created, would continue to make a difference in the lives of millions, and continue to save thousands of lives long after he was gone. As evidence of this ultimate, and astonishing evolution, in his last days, it was actually Jordan that was at peace with all of this, and was the one comforting his mother as his time was running out, and not the other way around. Imagine that. A young man that found peace in his own death, and comforting his mother and trying to help her find that peace as well, and not the other way around. That was Jordan Jones.
When it's my time to go, if I can look back on my life and feel as though I've accomplished even a fraction of what Jordan and the Jones family have, I think I'll have that same feeling of peace and fulfillment in life. Jordan will forever be my hero for not just inspiring me by how he lived, but by showing us all how to die with grace and dignity, and with the confidence of a life purpose and mission fulfilled.
Jordan will continue to drive me and inspire me for the rest of my life. I'm a big dude, 6'3" tall and I wear size 15 shoes, but Jordan's footprint in this world is immeasurable. I have a lot of work to do. We all do.
To all of Jordan's Friends and the Lives he touched
I wanted to share with all of you what has been one of my biggest lessons learned learned thus far, not just in life, but as a cancer survivor as well, and that is the power of our beliefs. There's so much in this world that we have absolutely no control over, but we do have control over what we believe in. I truly do believe, with all of my heart and soul, and every fiber of my being, that merely Jordan's physical body has died, and that his spirit and his energy is living on today, and smiling down upon all of us right now.
I had struggled with my spiritual beliefs for my entire life. I always felt so torn and conflicted between various religions, but realized that it was the lack of a firm system of spiritual beliefs that was a big part of what was causing me so much recurring fear and pain, even last year, when I was four years out from cancer. Finally allowing myself a system of beliefs to grasp and hold onto tigthly, helped to take the wind right out of the sails of so much of that inner pain, and the demons that I had been struggling with for so long. My spiritual beliefs have helped me to be less afraid and more confident in life, to make peace with my own history of cancer, and help me to find peace in the passing of friends such as Jordan, as well.
If you're hurting inside, and really struggling to make any sense of this at all, never underestimate the power of belief. I know that so many of us will miss Jordan's physical presence in our lives every single day, but it brings me peace and comfort knowing that Jordan's spirit and his energy are alive and well. I feel it, I believe it, and I know it.
To the Jones Family
To Kim and Jeff, and Breanna, and to all of your family members, on behalf of so many in the testicular cancer community, I want you all to know that you are hardly alone in mourning the loss of Jordan. The entire cancer community mourns and feels this loss with you, but we will also continue to celebrate his life with you as well. You've given so much to so many, and Jordan could not have been blessed with a better and more loving family, nor a better mother. You are all truly beautiful souls. Whatever you need and whatever your wishes are in the future, I want you to know that the entire cancer community is behind you, and that together we will keep Jordan's spirit and memories alive. Jordan "Sunshine" Jones will never be forgotten, and his legacy will live on, for a thousand years.
Thanks and God Bless you all.
The only opportunity that I had to meet Jordan in person was on May 8th, 2016, as he returned home to Grand Junction after his brain surgery, one month to the day before he died. The minute he was home, this rainbow appeared over Grand Junction. I think angels were guiding Jordan on his way up.
Returning home from Jordan's Celebration of Life, yet another rainbow greeted me in DFW on July 9th, 2016. All it took was meeting Jordan once to know that everything that everyone had said about him was true. I wish I could have known him better, but I'll always cherish the one time that we were able to meet and connect. Fly high, Scorpio, and keep shining.
Testosterone Challenges after Testicular Cancer
Every single testicular cancer survivor and their caregivers should be aware of the possibility of low or irregular testosterone levels after cancer, and that no, the other testicle might not necessarily ‘pick up the slack,’ as is commonly believed. It isn’t that simple. Every medical professional should also be aware of this possibility with testicular cancer survivors, especially if they’re symptomatic of hypogonadism.
Before I was diagnosed with testicular cancer at the age of 33, I had always been a very regular person. I had regular amounts of energy and enthusiasm for life, regular amounts of optimism about most everything, and there had never been a single depressive “bone” in my body. I felt confident and secure, had very regular moods which were all good, and very regular amounts of libido, too! My cancer diagnosis blindsided me, and shook my foundations to their core. How could you not feel depressed and anxious while you’re afraid for your life, and fighting like hell just to live at all?
I wasn’t the same person after cancer
I wasn’t the same person after cancer. My confidence had been shattered, my optimism faded, and my moods were all over the place. I wasn’t the predictable “rock” that my wife had known, and suddenly I became a very irregular person, the exact opposite of what I had been before. I had “times of the month” where I just felt completely out of it. I struggled with mood swings that went from euphoric highs and feeling on top of the world, to incredibly depressive lows. Some of this comes with the territory of being a cancer survivor, but I knew there was more to it than that. Most of the depressive phases would last merely a few days to maybe a week at the most, but then there was the time that I just felt completely out of it for over a month! I had absolutely no energy at all, and was completely lethargic and depressed. I felt directionless mentally, my libido was non-existent, and I just felt like a lump of asexual nothingness.
I’m a very lucky man to be married to such an incredibly beautiful woman. My wife and I have always been a very physically affectionate couple, and that has never changed even twenty years and two kids later, but this did it. Suddenly, I felt absolutely nothing for her. I had no interest, felt no love or attraction, and didn’t even understand why we were together! I didn’t recognize myself anymore, and my wife didn’t recognize me either. She had been used to getting regular physical attention from me in the form of simple caressing and playful squeezes whenever we’d pass each other, and more, but became very self-conscious and wondered if I didn’t love her or find her attractive anymore when all of that attention dropped off of a cliff! Forget about ‘scanxiety’ and cancer recurrence scares, which make you fear for your life. Not feeling anything for the love of my life was even more terrifying, because it made life not worth living for me anymore. This was a completely foreign life experience to me, and the most terrifying thing I’d felt throughout my entire cancer journey. I felt like Superman when he lost his powers – helpless, directionless, powerless – unable to do anything, and not even love my wife!
It’s Hormones, Stupid! What’s Normal??
I had no idea what the hell was going on with me, but one morning while in the midst of this, I woke up realizing that I didn’t need to shave. Even some body hair had seemingly thinned a bit, and it became obvious that my body was gasping for testosterone! It was my hormones talking, or rather, not talking! I went to see an endocrinologist in short order and did some blood work, which confirmed my self-diagnosed hypogonadism, aka “low-testosterone”. Normal free testosterone levels in men range from about 270 to 1070 ng/dl, and I tested out at 178. My testosterone levels had fallen through the floor, so the obvious question was, do I go on testosterone replacement therapy (TRT) or not?
The million dollar question that every testicular cancer survivor experiencing low testosterone-related issues is, of course, what were our normal levels to begin with? Unfortunately, almost nothing is known about the true nature of testosterone levels in men, which includes testicular cancer survivors. Even at the time of a testicular cancer diagnosis, the opportunity to get a clear snapshot of an individual’s natural testosterone levels are already lost, as the testosterone production of the cancer-stricken testicle could already have been compromised. Furthermore, testosterone levels in men can vary by month, by day, by time of day, mood, stress levels, and many other factors. Thus, getting a good idea of what “normal” testosterone levels are in even healthy men is by no means a trivial task. Was my normal testosterone level in the 200’s, and thus my recorded level of 178 ng/dl just a minor slump, or was my normal more like 1000, and my body was in a low-testosterone death spiral? There’s simply no way to know. After a testicular cancer diagnosis, most medical professionals will tell testicular cancer survivors that the other testicle will “pick up the slack”, but we’re not exactly like twin-engined aircraft that can keep flying almost as normal if a single engine fails. There might be a lot of peaks and valleys, but for how long? Will our natural testosterone levels recover to the point that we can maintain the same altitude as before, or will we be stuck near the ground? Nobody really knows, and there are long-term risks either way as far as whether to go on some form of TRT or not.
Key Things to Know About TRT
The major risk bullet points for hypogonadism and not going on TRT are decreased bone strength and osteoporosis, along with a potential increased risk of developing Alzheimer’s disease.
On the other hand, going on TRT ends up actually doing harm to our body’s natural ability to produce testosterone on its own, and can also decrease fertility. Once one is on TRT, you’ll likely be on it for life!
TRT can also promote cancerous and non-cancerous growth in the prostate gland, and testicular cancer survivors already have an increased risk of developing prostate cancer as compared to the general population.
Some Advice From Guys That Have Been There And Done That
So, what guidance do testicular cancer survivors have in navigating these hormonal pitfalls? Right now, none. A big part of the problem is that testicular cancer is so curable, that very little research is done to look into the challenges that survivors face in the aftermath. Perhaps this is a good problem to have with such a highly curable cancer, but problems are problems, and ignoring them never makes them go away.
Meeting Scott Petinga at the Minnesota State Fair, 2016
Minnesota businessman and testicular cancer survivor, Scott Petinga, is trying to change that. Petinga has suffered terribly from post-cancer hormonal challenges for over a decade now, but has never been able to find the answers he’s needed. Petinga took matters into his own hands, and founded not one but two non-profit organizations, The Center for Advocacy for Cancer of the Testes International (CACTI), and the TH!NK DIFFERENT Foundation, which he’s bankrolled with his own money, to finally support formal research into the very questions and dilemmas that testicular cancer survivors face. In the meantime, all we can do is make the best educated guesses for ourselves that we can, and hope for the best.
Every single testicular cancer survivor and their caregivers should be aware of the possibility of low or irregular testosterone levels after cancer, and that no, the other testicle might not necessarily ‘pick up the slack,’ as is commonly believed. It isn’t that simple. Every medical professional should also be aware of this possibility with testicular cancer survivors, especially if they’re symptomatic of hypogonadism.
Scott’s advice is to “most importantly, prior to your orchiectomy request that the Urologist perform a full hormone panel as a baseline. Once fully recovered a second panel will be used to conduct a variance analysis and based on the results you’ll be able to supplement effectively.”
Image via Ron’s Facebook
Ron Bye, a testicular cancer survivor of over 40 years, additionally suggests that “it is very important, when considering TRT, to truly understand the full complement of hormones and their relationships between them. High E2 (estrogen) can have the same symptoms as low T and often have that inverse relationship. If the issue is high E2, simply adding testosterone will often only increase E2 by converting the excess T to E2 with aromatase enzymes. Before starting TRT always get a full hormone panel!”
It’s A Personal Choice
As for myself, despite my miserable predicament at the time, I simply had no desire to go on potentially lifelong and expensive testosterone replacement therapy while only in my mid-30’s. My wife agreed, and with her support and understanding, I decided to forego TRT in the hopes that my body would right itself on its own. Around this same time, I just happened to start a daily program of vigorous exercise. Regular exercise is well known to keep people’s hormonal levels up, and this just happened to do the trick for me. Whenever I felt one of these hormonal slumps coming on, I made sure to get out for a run as soon as possible, and go as hard as I could. Without fail, I’d always feel much better the next day. Regular exercise has become a way of life for me after cancer; it has helped me to once again be that “regular” guy that I used to be, and so much more, going on 4 years now.
There might very well come a time when I’ll need TRT in some form, but I’m hoping to make it at least a decade or two out from my diagnosis before I get there. It’s hoped by myself and many other testicular cancer survivors, that the research being funded by Petinga’s non-profits will eventually bear fruit, and that we’ll have better information from which to make decisions regarding our hormones in the future.
Additional Perspective Via Nick O’Hara Smith
Image via Nick’s Facebook
This is a copy and paste of Nick O’Hara Smith’s very insightful and helpful comment below, but I wanted to make sure to incorporate it into the body of the blog itself so that it wouldn’t be missed. Nick broke so much new ground in this area over all of his years for all of us to benefit from today. Nick very sadly passed away from other causes in late-2018.
“I'm really glad exercise has been able to help you stay off Testosterone therapy. Nobody I know other than body builders wants to be on it.
I've been on "no choice" Testosterone therapy for close to 29 years because I lost both testicles. In truth, relying on a lifelong medication to enable mental, physical and irregular sexual stability sucks. It is not a given that ED and sexual stamina are cured by Testosterone therapy.
However, it is such an important hormone for us men, because it is fundamental to our overall health. Prolonged low levels affects practically every system in the body, from cerebral to heart, skin, blood, vessels and bone.
However, just because a testicle is lost and your Testosterone is low, it doesn't necessarily mean you have to take Testosterone for the rest of your life as you've found. Sometimes though exercise doesn't do it.
The need to take Testosterone or not really depends on the origin of the problem, whether it is testicular failure, or a failure of the system that demands testosterone from the testicles.
That system is controlled by the Pituitary gland which sends signaling hormones LH and FSH high, thereby requesting the testicles produce Testosterone. Sometimes the system is muted by confounding sources which, when corrected can allow normal production to resume.
In such cases where a testicle is lost, it is possible to induce signaling requesting the remaining testicle to make up for the loss of the other one using Clomiphene Citrate.
Sometimes that is all it takes. In some cases however, I have seen a combination of Testosterone therapy and Clomiphene Citrate together prescribed to ensure fertility is preserved. That particular treatment is exclusive to the USA experts in such matters so far as I can tell. The drug Androxal (Enclomiphene Citrate) is currently under trial and going through the FDA mill in the hopes of getting it to market to help those with Pituitary originating Testosterone problems.
Elsewhere in the world, Testosterone therapy is the only medication approved for treatment with the consequential loss of fertility when the remaining testicle shuts down its production. An unedifying prospect to say the least for any man.
The dangers of ignoring this problem are many, but it is largely ignored in the male population worldwide.
Doctors generally tend to be as ill-informed and dismissive as the average person in the street. However there are broadly similar guidelines covering most countries now, which I constantly advise patients to print, read and give to their doctor.
I find it ironic that something so fundamental to male health and fertility remains in the hinterland while male fertility world wide drops like a stone. One day man will wake up!”
Thanks so much Nick and God bless!
One final word
If you’re struggling with both testosterone levels AND you also want to maintain your fertility or explore fertility options, please do take a trip out to see Dr Ajay K Nangia at the University of Kansas. He truly gets the testicular cancer patient population and their challenges, and there’s no finer expert in fertility for testicular cancer survivors than Dr. Nangia. Many of us had the pleasure of meeting and interacting with Dr Nangia at the Testicular Cancer Summit in 2017, and he’s also appeared at a few of the follow-on events as well.
I hope that within my lifetime the testicular cancer patient population will have far more definitive guidance and options for the management of our hormones after cancer!
StevePake.com
You Don't Have To Have It All Figured Out To Move Forward
I'm a Scorpio. I have to know everything, and have to have all of the answers, but cancer presented me with questions that I just couldn't ever know the answer to. Will I be okay? Am I going to live or die? Will I live long enough to see my children grow up? This isn't how life works.
I'm a Scorpio. I have to know everything, and have to have all of the answers, but cancer presented me with questions that I just couldn't ever know the answer to. Will I be okay? Am I going to live or die? Will I live long enough to see my children grow up? This isn't how life works. There are no certainties, and we can never know such things. Not being able to know things like this broke me inside, and from that darkness I simply learned to cherish and enjoy every single day that I've had. It's okay to not know, but don't let that stop you from moving forward in life.
StevePake.com
5 Years Cancer Free
5 YEARS CANCER FREE, and formally discharged from oncology care today. Big day. It felt surreal walking out of my oncologist's office today, knowing that I don't need to go back anymore for this, and hopefully never again in my life. I'm a free man at long last.
5 YEARS CANCER FREE, and formally discharged from oncology care today. Big day.
To be completely honest, I've been far too stressed, busy, and distracted with other things in life to really process this huge moment, but I know what I'm feeling deep inside. When I do finally have some time to myself, I think I'm going to grab a really nice bottle of wine, and then go curl up in a corner and cry for awhile. It felt surreal walking out of my oncologist's office today, knowing that I don't need to go back anymore for this, and hopefully never again in my life. I'm a free man at long last.
These past five years have simultaneously been the most challenging, stressful, and terrifying years of my life, but thanks to the love, support, and camaraderie from so many of you, along with some truly wonderful friendships that have developed in the aftermath, they've also been the very best years of my life as well. When you feel threatened and like your days are numbered, you really learn how to LIVE your life fully, and you appreciate things that so many take for granted. I've lived more each year since cancer than I had in all of my life prior to cancer combined, and I've had five amazing and full years like that now. That's a whole lot of LIVING in a few short years. Cancer really does open your eyes and give you a whole new perspective on life, and I wouldn't give that back for the world. Life is beautiful.
I may have finally managed to get fired by my oncologist, but I'm not entirely free from follow-ups. I'm still going to have annual blood tumor markers checked, along with an annual scrotal ultrasound, as part of my yearly physicals with my primary care. My oncologist will also have them do some additional lymph node checks as part of the annual physical exam, with referral to my oncologist if anything doesn't look right. Biggest news is NO MORE DAMNED SCANS!!!! I'm done with the frequent flyer chest x-rays. The risk of a false positive at this point far exceeds the likelihood of there actually being cancer, and that would lead to unnecessary radiation exposure from a CT scan, so they're not really recommended. I'm certainly not going to miss going in for scans, I'll tell you that.
The real "end" of cancer in our lives, if we're ever able to get there, is if and when you can finally be discharged from oncology care. "We really don't need to see you any more, ever." That's the real ending, and that's when life really does move on. I've felt this evolution coming for the past year, and today the day is mine. Finally crossed that finish line, and I'm a free man.
Praise God.
StevePake.com