Steve Pake's Top 10 Guide to Surviving a Young Adult Cancer

To mark the end of Testicular Cancer Awareness Month this month, and as a late way to honor Young Adult Cancer Awareness Week which was also in April, I'm pleased to be able to share with you all a young adult cancer survival guide that I've written.  

Especially for Young Adults aged 15-39 and faced with a cancer diagnosis, there are so many unique challenges that we face compared to other age ranges. It’s not just our lives that we fear for at a time when we’re supposed to be invincible, but the fear of so many of our hopes and dreams that we’ve had for our lives slipping away right before us. As young adults, we’ve come so far and worked so hard in life, and are finally on the verge of being able to live if not already enjoying so many of these dreams. But in one fell swoop, a cancer diagnosis threatens to destroy and take all of that away from us. It’s so unfair, and we feel so crushed and cheated having to set all that we’ve worked so hard and made so many sacrifices for aside, just for a chance to even live at all. A cancer diagnosis is truly the ultimate betrayal. It’s our own bodies cheating on us with death at a time when we were counting on it the most, and all of the confidence and security we had about life vanishes in an instant. It’s beyond devastating, and it hurts so bad to be betrayed by our own bodies in such a terrible way at a key time in our lives.

Being struck with a cancer diagnosis and fight is challenging enough as it is. But if in mid-2011, right out of my brutal 5-month long fight against testicular cancer, someone with a crystal ball had told me that the mental and emotional challenges I would face in the coming years as a cancer survivor would exceed the physical challenges I had just faced fighting the cancer itself, I’d have given them some pretty funny looks, told them that they were crazy, and shaken my head with looks of disbelief and confusion and walked away. Because what could possibly be worse than the hell that I had just been through, right? Right? But today I know just how true such a statement would have been, because it’s exactly what happened to me, and it’s exactly how I feel today long after. I still can’t believe it myself, but I know it’s true. I had heard some stories, and I had even read Lance Armstrong’s book before my treatments started, but didn’t think any of the challenges of survivorship would apply to me. I was naieve and so very wrong, and know painfully now that the challenges of cancer survivorship should never be underestimated.

My cancer ordeal and the new challenges that I faced in life as a cancer survivor forced me to go through a personal evolution of self, and brought about the need to fundamentally change and restructure my approach to life and way of living in order to accommodate this new reality of mine. For the first time in my life I was truly scared, was afraid of living in my own skin, and was ill-prepared to deal with the anxiety and emotional rollercoaster that is “scanxiety”, as we go for follow-up appointments month after month, praying that our cancer doesn’t come back. I know what it feels like to have finally gotten your life back, only to fear losing it all over again from a terrifying recurrence scare that I experienced. I know what it feels like to have lost all hope, and feeling like you’re next, just waiting for the moment for more bad news to come, and that you’re going to be taken from the family that you love so much again. I know what a very deep depression feels like because I’ve been there. And I wish I didn’t know a thing about PTSD, which is single-handedly the worst thing I’ve ever experienced in my life, but I know all about that too. Rest assured that the real thing is far worse than any portrayal that you’ve seen in the movies. Your mind simply loses track of what’s real and what isn’t, and so many of your fears from the past find their way to the present, with little ability to distinguish between the two. And it potentially doesn’t stop… for weeks. It’s been over 3 years since my cancer diagnosis and over 6 months since any PTSD episodes, but the whole of this experience from diagnosis through today has hurt me so badly and deeply inside that I can still evoke tears on the spot, as I recall such painful episodes in my life as I write this.

My cancer survivorship experience spurned a personal evolution that finally began, way too late at the beginning of 2013, nearly two years after my initial cancer diagnosis. I knew that my entire approach to life needed to change, and that I was going to have to shake things up. Everything and everyone in my life was given scrutiny, including the person staring right back at me in the mirror. I was tired of cancer hurting me and my family, and set off to do whatever it would take to beat these terrible demons off for good, and for me to feel whole again. It took a full year to complete this evolution and it involved a lot more pain and trial and error, because I didn't know or understand what my needs were anymore. I needed to find out and re-discover my new self, whatever that may be. Towards the end of 2013 I was at last able to declare victory, and since the beginning of 2014 I’ve finally developed the emotional strength to begin looking back on all of this. After 4 months of reflection and more than a few tears and bottles of wine, I’m proud to finally be able to share with the world today my recipe for success. All of my secrets, my biggest lessons learned, everything that’s kept me going, and what’s really worked for me over the past few years as a young adult cancer survivor who has struggled to find my way in this new life of mine. 

1. Remove All Toxic Elements from Your Life

First and foremost, remove all toxic elements from your life. Fears, uncertainty, and doubts about cancer managed to fill every corner and crevice of my mind to the point that it broke me as a person.  When you’re so overwhelmed with negative thoughts, you literally become crowded out and can lose the ability to feel anything good at all, such as the love and laughter of your family. I slowly learned how to deal with and overcome all of this through the steps in this guide, but it came at a price. Having to focus inward so strongly has left the new me with neither the energy, nor the patience, to deal with much in the way of external toxicities. The news and its daily death count, who’s killing whom in the various wars that always seem to be raging around the planet, and the nasty blood-boiling political debates of the day have all needed to be switched off.  Trust me, you don’t need it and can get by just fine without it. And if Rome really is burning, you’ll manage to hear about it through word of mouth or at the office water cooler anyway. No need to be bombarded with such news 24/7. Focus on the good in your life and the world, and stay away from dark places and sources of negative energy.

2. Remove Toxic People from your Life

Similarly, if you’ve had people in your life that have repeatedly crossed lines with you, that have gone treading where they shouldn’t, or have rubbed you the wrong way one too many times, it’s high time to let them go too. Cancer is going to be playing enough head-games with you as it is, so the last thing you need in your life are actual people that are doing this to you too. True friends don’t do this. Let them go. God will not only bring much better people into your life when you do, but will reward you two-fold if you can forgive those that have hurt you, especially in such difficult times. I regret the few times that I’ve had to push people out of my life in these past few years as a cancer survivor, but it’s hard to imagine life without having met those that God brought into my life afterwards. These people have added so much to my life, helped to fill voids that I didn’t even realize existed, and I love, cherish, and appreciate these people so much. Make sure that your heart is in the right place, cut ties as gently as you can, and forgive those that have wronged you when you’re able and move on. Have faith that God will take care of you.

3. Find People that you Feel Safe Around and that Help you Feel Good

As someone who has suffered from post-traumatic stress disorder from my cancer, I’ve had to completely restructure my social life and social circles all based around how “safe” I feel around people. To this day, I still struggle to even begin to explain what exactly it is about some people in their ability to help me feel better, safer, more protected, or more understood in my life. Perhaps it’s some sort of deeper connection or understanding, or a common thread between souls, but these people are out there, and these are the ones you should try to develop closer ties and deeper friendships with, and spend more of your time with. These people are the gifts that God will bring to you, if you can manage to do the above and remove from your life those that have been toxic to you. Even if you’ve been hurt and are afraid to reach out, trust what your instincts are telling you about some people. The new or deeper friendships that I’ve developed with “safe-zone” people in my post-PTSD world have meant the world to me, helped me to heal, and helped me to feel safe and whole in my own skin again. Don't waste your time with people that bring out feelings of uneasiness in you and make you feel unsafe. They're no good for you.

4. Stay Engaged with Life and Enjoy Each Day

A history of cancer in our lives takes so much away from us. It changes our reality forever with an entirely new set of life circumstances. Memories of the brutality of our treatments haunt us, all while the future becomes so uncertain and terrifying. We worry if our cancer might come back, or if we’ll even have a future at all. All we really have left is the day and the moment before us, and nobody can take that away from us. Carpe Diem! Learn to live in the moment, and to enjoy and cherish each one that comes. Don’t let a day pass where you haven’t done something for yourself, anything that you know will put a smile on your face to give you some enjoyment in life.  Take the long way home because you like the drive better, go out to lunch with friends, or sneak out of work early to go for a run or for some private time with your significant other before your kids come home from school. After you’ve fully enjoyed today, make plans for tomorrow, and fill your calendar with fun things to do for the days, weekends, and months ahead. Keep your calendar full, and your mind engaged on enjoying the days and the life that you have before you, right here and now. Enjoy today first. Worry about tomorrow when it comes.

5. Take Back Control, Don’t Be Afraid to Do Your Own Thing

Among the many things that we lose as cancer fighters and survivors is the sense of control that we thought we had over our lives. It’s a helpless feeling as we shuttle from one doctor and one treatment to another just fighting to live, which is another traumatic life experience all by itself. Both at the time of our diagnosis, and during survivorship if we have a scare or fear our cancer might be back, it's not just our lives that we're fearing for once again, but that sinking feeling of being taken prisoner and our lives once again being held hostage by cancer, and the fear of losing all of the freedom and control that we had over our lives. It's a truly helpless and humiliating feeling to suddenly feel dependent on so many others at a time when we're supposed to be fully independent, and realizing just how little control we have. During survivorship, it’s all too easy to be caught up in the plans and schedules of others. Don’t be afraid to break with the group and make your own plans, or to do your own thing, in your own time, and on your own terms. It’s a very healthy exercise that will help you to gain a sense of getting some of that perceived control and independence back. Especially if you’re struggling emotionally or are trying to stay one step ahead of depression or PTSD as I have, every bit of control you can gain over your external environment is important. There are times when I couldn't even ride in a car with someone else, because I just felt like I needed to have that extra bit of control in my life, to drive my own car, at my own speed, and to have the ability to come and go at a time of my choosing and no one else's. When I've been hurting so terribly inside dealing with the after effects of post-traumatic stress, little things like this helped me to gain back some sense of control, and slowly my world was able to expand again. Enjoy your friends and the plans of others, but don’t be afraid to do your own thing and live life on your own terms as often as you need. 

6. Find Healthy and Productive Outlets for your Stress and Anxiety

Cancer truly is about the worst kind of betrayal you can face in life, which is why it’s not just a suggestion but a requirement that you find healthy and productive outlets for the stress that you’re likely to experience as a cancer survivor. Writing in my private journal has been a great way to vent away painful feelings, or to help understand confusing emotions. I’ve unlocked a lot of secrets about what makes me tick through writing in my journal, which in turn has helped me to understand what I need in my life and how to take care of myself better. When I’ve been anxious or afraid, executing my exercise routine has been a great way to bleed that energy off. I commonly run a 5K over lunch, which also serves as my private “me” time where I’m free to just meditate, or try to sort out whatever is on my mind. When I’ve been angry I’ve gone to the local shooting range with paper cancer targets in hand, and it’s strangely satisfying rapidly unloading a pistol or better yet a shotgun into those stupid cancerous cells. When I’ve been too afraid to be alone and my wife has been tied up with work or other things, I’ve made plans to spend time with some of those friends that I’ve felt very safe around, and it’s always been a great time. I never used to drink, but I’ve become a bit of a wine connoisseur, and can tell people a bit about different types of wines. I’ve never been on anti-depressants as it just wasn’t the right choice for me, but a nice glass of wine as needed has always helped to calm my nerves, ease my pain, and help take the edge off of things for me. And hobbies are a truly wonderful thing, along with the friends that come with them. I have photography buddies, car buddies, shooting buddies, among others. There’s always a circle of friends out there that I can engage with on my hobbies, and this has always helped to keep my mind out of the dark places.

7. Accept your Limitations, and Listen to what your Post-Cancer Body is Telling You

Your body is never going to be the same again after fighting cancer. Chemotherapy regimens are extremely toxic and can leave lasting damage, and highly invasive surgeries have their own risks that can permanently alter the landscape of your body as well, even when performed by the world’s best surgeons. Cancer itself means that a part of our bodies went terribly wrong and likely had to be removed in part if not in full. There’s excess capacity and redundancy built into our bodies in many cases, and we can go on living, but it absolutely doesn’t mean that our bodies will go back to normal. There’s likely to be some if not a lot of dysfunction as our bodies struggle to adjust, and our hormones and other levels fluctuate around, not to mention the chronic pain issues that so many of us experience too. What happens when a twin-engine aircraft loses an engine? Are pilots trained to keep flying it and get it on the ground safely? Yes. Is it business as usual? Heck no! Cancer means that our bodies just lost something permanently, and you’re going to have to learn how to keep yourself airborne without that, for the rest of your life. 

It took me a pretty long time to let go of the fact that I didn’t have the body that I once did. I pushed myself trying to do the things that I could do before and thought that I still ought to be able to do, but just kept failing. I became more and more frustrated with myself, my body kept breaking down, and my mood sank. I had been crashing and burning hard. Once I let go of my expectations for my old body, started listening to what my new post-cancer body was telling me, and the more I learned to respect what its new needs were, the better my life became. You’re never going to be able to learn what your new post-cancer body can and can’t do until you fully let go of what it was capable of before. It’s going to take some time, and it might even take years as it has with me, but once you fully know your body again and what exactly it needs and when, you’ll feel empowered and your quality of life will improve. I’ve let go of my frustration and disappointment at what my body can’t do and the various dysfunction that I have to deal with, and have just learned to become appreciative of what it can. I can't reach the altitudes that I used to and have to be extra careful in crosswinds these days, but I’m in the air and know how to keep myself there now, and dammit I’m proud of that!

8. Don’t Try to Forget – Stay Engaged with the Cancer Community

It’s all too common advice from friends, family, and even medical professionals to tell you to “just try to forget this and move on”. They’re all crazy. It’s tough enough to forget a supposed friend who stabbed you in the back, and it’s also tough to forget a failed romantic relationship or marriage especially if there was cheating. So how on earth can we be expected to “just forget” the ultimate betrayal or our own bodies? Maybe someday you’ll be able to make peace with and forgive your body, and hopefully this guide will help you a bit, but you’ll never be able to forget that you had cancer. It’s been far too painful for me to forget, because reminders of this terror inevitably find their way to me, which then brought this terrible history back in a sudden and uncontrolled way. The most helpful advice I’ve ever received during my cancer survivorship was from my dearest mentor, who suggested the completely counter-intuitive approach of NOT forgetting. Rather, embrace it. Do some good with it. 

My mentor had been writing articles for an association magazine for her own cancer, which she asked me to proof read and which I found to be inspiring. Numerous cancer survivor friends of mine participate in LIVESTRONG events across the country, which had also inspired me. And there are plenty of support groups and organizations that you can join to help others through their own battles. Staying engaged with the cancer community and outreach groups is also a way of holding onto that warrior instinct that you had when you were fighting your own cancer, and gives you additional strength when you're feeling weak. And when your own cancer demons really come knocking hard, it's your friends in the cancer community that will know and understand what you're feeling the best. It's good to surround yourself with people like these. We all help to support each other in the cancer community, and even those that have done so much to inspire and support others need support themselves at times.

There’s not a day that goes by when I’m not thinking about cancer at some point, my experiences and what I’ve learned through my cancer journey, trying to help someone else going through their own cancer fight, or the ways in which I could help others in the world facing cancer with my own knowledge. Becoming a Young Adult Cancer Survivor is the last thing I ever thought would happen to me. But it’s the life that I’ve been given, and just as my mentor has, I’ve not just accepted it but embraced it as best I know how. I don’t want to think about cancer everyday, but it’s the very best way forward for me. Staying engaged with the cancer community is a way to give back to this community and other people in need, and a way to do some good with this terrible knowledge that I possess.  

9. Love and Support your Supporters and Caregivers

As hard as it is to be the one fighting cancer and then having to heal both physically and mentally, don’t underestimate just how much pain it causes those that love you to be along for this terrible ride in the passenger seat. Fighting cancer is a deeply traumatizing experience not just for the person fighting, but for anybody emotionally involved in their lives. It tears them apart inside too. Cancer survivorship is a time of healing for all involved parties. Take time out of your lives for your loved ones. Go on some nice trips and getaways together and really enjoy each other. Let no moment go to waste. You all know how short and precious life can be. Live it up! If not now, when? You’ll never forget what you’ve been through, but the new wonderful memories you’ll make together with those closest to you, will go a long way towards helping you heal. 

I’m especially grateful to my wife, my family, closest friends, my cancer mentors, and spiritual guides and confidantes for their active support, and have let them know just what a difference they’ve made. I wouldn’t have made it to where I am today without their love, support, and friendships. And there are some that have just been exactly the right people, the right souls in my life, at exactly the right time, without even being aware of the difference they had been making in my life. Just the presence of their persona was able to have such an effect on me. It’s a very powerful feeling to know that you’ve helped to make such a wonderful difference in the life of another, especially just by being yourself. Share the gift of this knowledge with these people and let them know. I guarantee you that they’ll be honored and filled with joy.

10. It's Okay for Young Adults to Cry Too

The bottom line is that all of this just plain hurts. It's okay to cry, and don't let anybody tell you different. I've been so distressed and spooked, haunted, afraid for my life, afraid for my family, and so tired of being afraid of so much during these past few years as a cancer survivor, that I cried everyday for an entire month at one point. It's the body's way of relieving extreme stress, anxiety, and tension. It's beyond terrible to hold so much pain inside of you as I had been. I was completely wrecked inside and needed to release it all in whatever way I could, with whatever outlet I had. Most people probably don't know or understand what it's like to carry so much pain that you could cry everyday for a month, sometimes numerous times per day. The potential for emotional distress and mental-health issues for Young Adult cancer survivors is right up there with parents that have lost children, losing a significant other, or soldiers returning from war suffering from PTSD. I wish I could say this has been a lot easier, and I hope to never feel pain like this ever again in my life, but it really can be this bad. But you must release this pain. When you're at your lowest and darkest point, you can't begin to resume life as a more fully functional human being again until you do so. This 6-foot 3-inch large-framed bruiser of a guy that many have thought surely must have played [American] football or whom must have been in Army Special Forces is telling you that it's okay to curl up on the couch and cry it out. It's okay. Go for it. Just let it fly, and you'll feel better after you do.  

Despite all of the challenges that I’ve faced in my life as a result of cancer, I know that I’m also truly blessed in so many ways. Many young adult cancer survivors find dating and relationships to be so awkward. How and when do you tell a love interest about your cancer history, and will they be accepting of that or not? Cancer becomes yet another layer for potential rejection in something that’s already difficult. What a blessing it’s been then, to have the true love of a soulmate by my side all these years. My wife and I will celebrate our 10 year wedding anniversary this year, and will have been together for 18 years total. I’m married to an angel, and my wife is truly God’s greatest gift to me in so many ways. I wake up every morning feeling like a blessed man with my wife by my side. She makes all that’s been so wrong, so right.

Like all too many young adult cancer survivors, I’ve suffered a complete loss of fertility as a result of my cancer treatments as well, which I'm revealing in public here for the first time. And with that loss, any hopes of my wife and I having more children together were gone with it. What a blessing it’s been then, to have the two awesome children that we had in the years just prior to my cancer diagnosis.  We had maybe wanted a third at some point, but this is an impossibility now. I’ve shed tears over this, but we’ve made our peace with the situation. We both love the two children that we have so dearly. They’re our lives and our everything, and literally irreplaceable. For all too many young adult cancer survivors though, the dream of ever experiencing the joy of a family and children of their own at all are fraught with challenges, and for some the dream is lost for good. It can become yet another layer of devastation in the life of young adult cancer survivors.

And what a great gift it’s been for me to both work in an environment where my needs and challenges as a cancer survivor have been so well understood from the top on down, and to have such a wonderful network of friends and supporters that have helped me along at every step of the way, almost like a relay team of angels. Not everybody is so lucky to have the supportive work environment that I’ve had, nor the network of support that I’ve had in my personal life, and the lack of either can cause very big problems for cancer survivors, too.

So perhaps a final lesson that can be learned as a result of the sum of my experiences as a young adult cancer survivor, is to appreciate the blessings that you do have in your life. Life doesn’t always turn out how we expect it to, and we don’t always get what we want. When you’ve reached rock bottom and have lost all hope, and feel as though you have nothing left as I had, simply appreciate the air that fills your lungs. For as long as you keep breathing life is going to go on. And as sure as the sun rises every morning, God’s blessings will be coming too. Have faith, and be open and ready for these blessings. Lastly, always know that you’re never alone in this. There are more and more young adult cancer survivors just like me around everyday. We understand because we’ve been through it all ourselves, and we’re ready, willing, and able to help. This is pure hell. Don’t be ashamed. If you’re sitting in the dark alone and afraid, reach out to us, and we’ll help guide you back to the light.

God bless,
April 30th, 2014

Dedicated to all of the wonderful people that have been a part of my life in the past few years, and especially in 2013 when I had been struggling so badly. Thanks for making a difference in my life.