Cancer Survivorship at Six Years
Six years after my cancer fight, I still GRIEVE the loss of my life as I once knew it sometimes, thinking that everything would always be okay, that my family would always be healthy, and friends that I truly love and care about will always be around. I want to believe that, but know it's just now how things work. Why do I get so sappy and emotional? Because I love you, and I want you to know that now, today, because I know that you might not be around tomorrow, or maybe I'm the one that might not be around.
Yesterday, a friend told me that an old friend of hers from high school just lost her 25 year old son to testicular cancer. He was diagnosed hardly a week ago, but the cancer was so far advanced that there was nothing that could be done, and he just passed away this week. Sigh. 💔
We ALL live in this world, where people that you love and care about today can be gone tomorrow in the blink of an eye, and without warning. It's not right and it's not fair, but it's how life really is. I've been here in a way, feeling like my own death was imminent not just once but several times. Luckily I'm still here, but I'll never get that innocence about life back again. It's a part of me that died. Other things have grown in its place, but it doesn't mean that I don't miss it. What I wouldn't give at times to just feel like forever is really going to be forever again, and to have that peace and certainty inside of me again. But I know that I can never have that again in this lifetime, and that maybe I wasn't meant to have that.
Six years after my cancer fight, I still GRIEVE the loss of my life as I once knew it sometimes, thinking that everything would always be okay, that my family would always be healthy, and friends that I truly love and care about will always be around. I want to believe that, but know it's just now how things work. Why do I get so sappy and emotional? Because I love you, and I want you to know that now, today, because I know that you might not be around tomorrow, or maybe I'm the one that might not be around. Ask me one thing that I feared during the times I felt like I was dying. Things that were left unsaid. How do I find peace today? By leaving nothing unsaid.
I'm turning 40 in October, and for years after my cancer diagnosis at the age of 33, this was just a pipe dream. I never thought I'd make it. I figured out why I'm so restless this year. It's because there's a part of my subconscious mind that still believes that, and that maybe my day is still coming soon. And how do I know that it isn't? That innocence is gone forever, and the persistent feeling of vulnerability remains.
Six years later I'm still spooked by this. I can feel that fear deep inside of me, but I'm at peace with it all. It's what drives me and pushes me forward, and sometimes we need that. Even as a cancer thriver, you might still be afraid. How else do I find peace in my life? By channeling this energy into meaningful things. Make each day count for something. Be a part of something larger. Create something of your own. The best way to live when you feel like life might be catching up with you again, is to never waste a moment! The best way to survive cancer is to LIVE! Get out there and make today happen!
Here's to SURVIVORSHIP!
Related Posts:
National Cancer Survivors Day 2016 - The Rush to Evolve After Cancer
Happy National Cancer Survivors Day 2015
StevePake.com
Cancer Survivors Are Grieving Too
One day I was reading my friend's website, and my jaw hit the floor when I read a post about grief. It was the first time I'd ever seen a "grief chart." I had no idea there even was such a thing, and I could easily identify myself at every single step of this big curve as a cancer survivor. I had been writing and sharing in my cancer journey for a few years at this point, and it had never occurred to me even once that this entire process and all that I was going through, was all really one massive grief curve.
My good friend, Hanssie, writes about the very painful divorce that she went through on her website. I've always enjoyed reading her thoughts, as she writes about her divorce in almost the same exact ways that I've written about my cancer experience. It's comforting in a way to know just how similarly we can experience and process traumatic events in our lives. I've really found myself in some of my friend's writing despite such different situations, and being at opposite ends of the country from one another, and never having actually met in person yet at that point, and being different genders. What does that tell you? It doesn't really matter what traumatic life experiences we've had, as we're all human inside, process things in all of the same very human ways, and that we're never alone. To struggle is human.
One day I was reading my friend's website, and my jaw hit the floor when I read a post about grief. It was the first time I'd ever seen a "grief chart." I had no idea there even was such a thing, but I could easily identify myself at every single step of this big curve as a cancer survivor. I had been writing and sharing in my cancer journey for a few years at this point, and it had never occurred to me even once that this entire process and all that I was going through, was all really one massive grief curve.
Mind blown.
It's pretty obvious and intuitive that when you experience something such as a divorce, that you're grieving the loss of your marriage, and someone you had loved. Similarly, if you've lost someone that you love to cancer, or a disease or some tragedy, no one needs question if a grieving process is taking place or not. Duh. When it comes to cancer survivors though, it's completely counterintuitive, and nobody really seems to understand, that cancer survivors are grieving too.
Everybody seems to think that cancer survivors are just supposed to be happy. Our doctors are ecstatic when they can actually cure someone, because plenty of cancers aren't curable. They think we're just supposed to go on with our lives and be over the moon, because we beat cancer. Our families and friends tend to think the same. Yes, they'd been through a little something, but emerged victorious and ought to be feeling like a million bucks. I'm telling you, it ain't like that. So what are we grieving?
Cancer Survivors Are Grieving The Loss of Their Lives As They Once Knew It
Nobody gets married thinking they're going to get divorced, and so a divorcee is grieving the loss of their marriage, the loss of someone they had loved, and are now facing the entirely new challenges of single life, and single parenting or co-parenting, all of which had been previously unimaginable. I know a few mothers, fathers, and wives who have lost someone that they've loved to cancer, and are now facing the challenges of a life that they couldn't possibly have imagined either, while missing their loved one every single day. All of these are naturally understood, but cancer survivors are grieving in much the same way. We too are grieving a "loss" - a loss of our lives as we once knew them - and are facing new lives as cancer survivors that we couldn't possibly have imagined, either.
Related: Cancer Survivorship - The Fight After the Fight and All of its Firsts
We were invincible and nothing could possibly happen to us, until something did, and now we know just how vulnerable we all are. We were in the best shape of our lives, and then cancer beat us down to nothing, and we have to start all over again. We thought we had control over everything, only to realize we don't, and now we feel so powerless. We were worry free, but now every cough brings the worry that our cancer has returned, and that there won't be a cure the next time. We're overwhelmed and afraid. It's all too much to handle, and we fall into depressions for weeks or even months at a time, when previously we had always been upbeat about everything. We find ourselves sitting in a corner one day, in tears and scared out of our minds, because our eleventieth follow-up scan is the next day, and we're petrified that "this is the one" where they're going to find something. We worry that our cancers have returned, that we've just lived our last good day (again), and that we're not going to be so "lucky" this time. We feel so alone as all of our friends are continuing on with their lives like business as usual, while we're perpetually fearing death and stuck dealing with all of this crap.
This is not the life we had expected for ourselves, facing cancer and all of this misery - and much like the divorcee, we couldn't possibly have imagined the lives we're having to live now if we had tried. The divorcee, the widower or someone that's lost someone, and the cancer survivor, all have something in common - the loss of their lives as they once knew it, and the completely unforeseen challenges of an entirely new life that they couldn't possibly have foreseen nor imagined. We all grieve. It's all the same process of loss and loss adjustment, just about different things.
How Do Cancer Survivors Grieve?
Going Down
I know some people in their 60's who have recently been diagnosed with various cancers, and many of them are in shock and disbelief, thinking they're too young for this. How do you think I felt at 33? That's right, nobody ever thinks they're going to get cancer, even those right at the median age for the diagnosis of many cancers. When I was diagnosed with cancer, I felt everything on the left half of that grief curve all at once. I was in shock, I was in denial, I was angry, and I cried for days. I was terrified out of my mind and thought for sure that I was going to die, and was in complete disbelief about everything. How could this be happening to me? I'm only 33! What about my children? We had just brought them into the world, and here I was on my way out already? Searchings, Disorganization, and Panic. I had just been laid off from my previous job in the months before I was diagnosed with cancer, so I can tell you a few things about loneliness and isolation, too. That was like being kicked when you were down.
Everybody is a little different, but during my cancer fight I went entirely numb. I shut down emotionally and just put a brave face on for my family and my children. If daddy looked like he was going to kick this cancer's ass, my family wouldn't worry as much. I didn't want them to. My children were so young and didn't know anything about cancer, but they understood that daddy's back went out once in awhile. We just told them that daddy had spiders and ladybugs in his back, and had to get some really nasty medicine for a few months to kill them all, and then I'd feel better. We eventually told them that I had cancer, and that I write this website to help other people find their way through this really rotten grief curve that nobody seems to think cancer survivors should be experiencing. Maybe they will after this.
The actual grieving process can easily look much more like the one on the right than the left. This is not necessarily a linear process at all, but you get the idea.
Rock Bottom
After cancer, I was back to life, got a new job and was back to work, back to kicking ass again, and I was energized and motivated. I loved my new job, loved my new colleagues, and loved having money in the bank again. Know what was awesome? Just having money to go out to lunch with friends, which was a helluva lot better than sweating every penny because I was out of work for six months due to a layoff and fighting cancer at the same time. We're one of the few people that actually kept a six month buffer of living expenses in the bank, because I had been worried about losing my previous job. That did happen, but who would have ever thought we'd need every bit of that to fight cancer, too.
For my first year and a half after cancer, I thought I was doing great, but still didn't have even the slightest clue what had hit me, nor what I had been through, but it all started catching up to me. Monthly scans were starting to get the better of me, and when my body acted up I worried, but nothing makes cancer more real than when friends you had made started dying of theirs. It's almost like my subconscious mind really did want to believe that my cancer was just a really rotten case of the flu, but watching friends die suddenly made it all real. This is cancer, not the flu. People die of this, and families are torn apart by this, and watching this happen to people I cared about is when the emotional floodgates finally opened on me.
I nearly lost my mind. In fact, I did lose my mind for awhile. I always had this rock solid confidence about me, but now I didn't know up from down, and spent every waking moment of 2013, two years after my cancer diagnosis, trying to stay one step ahead of PTSD. I fell into a terrible depression, I withdrew from friends, and I withdrew from my colleagues, and to this day have never really re-engaged fully. I know why, but that's a story for another day, having to do with complex trauma issues. About the only people I could be around at all were my wife and my two children, and my world became very small for a while. I thought I had everything figured out, but here I was adrift like a kite in a thunderstorm, two years after my cancer fight.
"Re-Entry Troubles" to the max.
Finding My Way Up
Related: Steve Pake's Top 10 Guide To Surviving a Young Adult Cancer
It took me a year, but eventually I figured life out and wrote the above essay, not for others but for myself. When one finally emerges from a long struggle, there's this moment of clarity where you have an intimate understanding of all that went right and why, and all that went wrong and why, and how you got through it all. This is the very first essay about cancer that I ever wrote, and I wrote it for myself because I wanted to remember, and because I never wanted to hurt like this again in my life. God forbid if that day ever came, I wanted to be able to read my own writing, so that I'd know what to do if I had forgotten. I just couldn't hurt like that again. Ever.
This essay to this day has been shared and read thousands of times on social media, and within hours of its publishing I had a few offers to join various cancer non-profit organizations. From that point forward, it just became a mission for me in my life to do everything in my power to help others through not just their cancer fights, but these challenging survivorship years after. I joined the Testicular Cancer Awareness Foundation and started blogging for them, because it just felt like the right place for me to be, and I got all of the right vibes and energy from the family that founded it. I made a lot of new friends in the non-profit arena, and there's so many similar people on similar missions that just like me, have grieved loss in their lives, and wanted to do good for others.
New relationships and new strengths, and all of the right people that I needed in my life.
I wasn't out of the woods yet, but I finally knew how to take care of myself, and how I needed to live my life after cancer. I enjoyed the hell out of every day the best way I knew how, I ran like the wind because it gave all of the anxiety I had freewheeling inside of me a healthy way to exit, and I bled into my keyboard to give all of that dark energy inside of me a healthy way out, too.
New patterns and hope.
My wife would often see me at my computer in tears, and asked me why I wrote if it hurt so much. The answer was not that I was hurting because I writing, but rather that I was writing because I was hurting inside, and my writing gave that pain a healthy way out of me, just as my running gave my anxiety issues a healthy way out of me as well. The PTSD that I experienced two years after my cancer diagnosis came far closer to killing me than the actual cancer ever did. That was so painful to experience that it took me another three years to even start opening up about it, but I felt so much better after I did. My writing has helped me release so much pain, and it's helped so many others find their way through their own.
The Top of The Curve
You know that you've done something really amazing and worthwhile when you have someone tell you that your writing has saved their lives, because they were so lost and afraid after cancer that they were ready to end it all, just like I was. They had found my writing and another person suffering like they were, and just knowing that they weren't alone, weren't truly crazy, and that other people deal with this shit too, was enough to keep them going. That's just amazing.
What if I told you that I've been told such things more than a few times now?
Mind blown.
I'll tell you that recently becoming a Director at the Testicular Cancer Awareness Foundation, and having launched an entirely new from the ground up TCAF Ambassadors program that I've created and am really proud of is all fine and good. Having won an award for my writing, and being able to say that I'm an award-winning cancer blogger is a pretty cool thing to be able to say too, but all of this pales in comparison to those moments like the above. When someone reaches out to me to let me know just what a difference I've made, and that they might not be here today if it wasn't for what I've been working so hard at over the years, that's what matters, that's what counts, and that's why I do what I do, bleeding all over my keyboard for the past few years.
I still have some days here and there when I feel like something's once again gone or going terribly wrong in my body, and knowing that I've done some good in the world with my time here helps me to still feel at peace.
Affirmation, Helping Others, and Full Loss Adjustment.
I'm finally there. It only took me the better part of five years, and I've never had to work harder nor for longer at anything than I have at this, but I'm there.
I look back on this long grieving process of cancer survivorship, and tear up at some of these dark times I've experienced. It's not right, and it's not fair, but that's just how life is sometimes. No matter where you are on this grief curve after cancer, I'm here to tell you that you're going to make it, even if your body isn't. Our bodies are fallible, but souls are immortal. I'm all-in on believing that even if you don't, because it's the only way I could stop being afraid of cancer, and I refused to live my life in fear anymore. Otherwise, I wouldn't have gotten to where I am today. I'd be perpetually stuck somewhere back on that grief curve around re-entry troubles and depression, and I just refused to accept that that's how things were going to be. No f****** way!
You just head straight past Go, and onto New Relationships, New Strengths, and New Patterns (including thinking patterns and beliefs!), because that's the only way you're going to get past where you are. You have to evolve. My motto is this. So long as you're not hurting yourself or anybody else, it's all fair game.
Now tell me again that we're just supposed to be happy after cancer. The next time you run into someone who thinks this, send them my way. I don't think my friend is fully over her divorce yet, just as I don't believe that deep inside I'm fully over having had cancer yet, either. I don't think my friends that have lost husbands or sons to cancer will ever fully be "over it" either, but we grieve and we evolve slowly but surely, and maybe one day, we can eventually reach that plateau of full acceptance and loss adjustment.
Related post: Longing To Feel What I Know I'll Never Feel Again After Cancer
There's still some days like the above when I once again find myself grieving about all of this, but I accept it now. Cancer survivors are hurting inside, just like a divorcee hurts, or someone that has lost someone hurts. We hurt about very different things, but it's all the same human process inside. There's nothing wrong with you. Cancer survivors are grieving too.
StevePake.com
Cancer Can Haunt Us For A Very Long Time
Today marks my last two days of chemotherapy for testicular cancer, six years ago. Why do I mark the last two days, and not the last day? Because I distinctly remember just how scared out of my mind I was, worrying that the chemotherapy hadn't done its job, and that I'd have to go through these months of misery all over again, possibly without a healthy exit.
Today marks my last two days of chemotherapy for testicular cancer, six years ago. Why do I mark the last two days, and not the last day? Because I distinctly remember just how scared out of my mind I was, worrying that the chemotherapy hadn't done its job, and that I'd have to go through these months of misery all over again, possibly without a healthy exit. My cancer was negative for blood tumor markers, so there was no way to get interim updates via simple blood checks. Scans are the only thing that would tell us, and I remember being so afraid that I just wanted to rip out all of my lines and run away. I knew that I couldn't, and had to take some extra Ativan with my chemotherapy just to calm myself down enough to make it through.
Six years ago seems like an eternity to most, but it's not that simple when it's cancer. It sticks with you and can find ways to haunt you even many years after that. As recently as just two years ago, I was minding my own business at work and hadn't given this milestone even a single conscious thought, when I was just overrun with anxiety and found myself in an unexplained state of panic. I was confused and didn't know what the hell I was afraid of, but then it dawned on me, that these were those last days of chemotherapy four years ago at that point. Consciously, I hadn't given it even a single thought, but subconsciously, my mind still remembered, was still thinking of this, and it was still afraid.
I wrote this blog about that day: A Snapshot of Posttraumatic Stress
I left work and went home for an emergency 5K run, as though I really were running away from this, as if to satisfy what this part of my mind wanted to do all along. It was even raining out, but I didn't care, and so there I was running through the rain with tears streaming down my face, because deep inside I was still so afraid of this. I felt so defeated. I thought I had made it past all of this, only for another layer of pain to reveal itself. There was no way in hell I was going to live my life in fear like this even so many years out, and vowed to do whatever it took to root this pain out of me. I couldn't live like this, and so just two years ago I started fighting again, not against cancer, but for peace of mind after cancer.
I didn't care what I had to do, what beliefs I had to overturn, or what parts of myself I had to tear down or burn to the ground. I wanted these demons gone, because there's nothing I wanted more than to feel at peace inside. Cancer wasn't the issue - I was the issue, and my own worst enemy was me.
Later that year, I wrote this: 10 Important Lessons on Life, Love, and Forgiveness After Cancer
My body had healed itself after cancer, and there were no cancer cells to be found, but I had never truly healed my soul from cancer. I really found myself in the story of cancer survivor and author, Anita Moorjani. I needed to learn forgiveness, and to allow myself to be exactly as I am as if I were fulfilling a purpose. Forgiveness and self-love were both foreign concepts to me, but deep inside, I still had never forgiven my body for developing cancer and was terrified of it coming back, I had never forgiven myself for the times that I had been less than "perfect" in the midst of such a crisis, and had never forgiven others who had really failed me or let me down. I forgave my body, forgave myself, and forgave others, and allowed myself (and others) to be exactly as they were for the first time, without judging or criticizing every thing I had ever done. We all have a purpose, and we're all exactly as we were meant to be, if only we allow it, and stop getting in the way of ourselves.
I burned myself to the ground again, so that I could evolve once more, and it was after this year of struggle that I finally felt what I had longed to feel for so long - a true inner peace for the first time after cancer. I'll never forget that moment, standing out on the beach taking in the sunrise when it just came to me, with tears streaming from my eyes.
I captured that moment here: That Moment When You Realize, Life Really Has Moved On After Cancer
That was only two years ago.
The point of this trip down memory lane is that true healing after cancer is achievable, but it can take a long time. This is not a race, and it could take you many years to get there, but you can get there. Never stop trying, and never stop believing in yourself, but you might have to tear down some of the things you believe in. I've never had to work harder at anything in my life than finding peace again after cancer, but there's been no more worthy endeavor. What kind of price can you put on achieving a true inner peace after cancer? It's truly priceless.
StevePake.com
Mother's Day at Longwood Gardens
It's become a bit of a tradition to meet my folks at Longwood Gardens in Kennett Square, PA for a Mother's Day get together. There's a bunch of good places to have a nice brunch around there, and the gardens are beautiful, and great for family photos.
It's become a bit of a tradition to meet my folks at Longwood Gardens in Kennett Square, PA for a Mother's Day get together. There's a bunch of good places to have a nice brunch around there, and the gardens are beautiful, and great for family photos.
I've been "phoning it in" lately with my photography, and just used my Canon 7D Mark II, 18-135mm STM "kit" lens, and then my Tokina 12-28mm ultra-wide lens for photos. Having some powerful fill flash is critical for good outdoor portraits when you're also dealing with deep shadows, but alas, I only had the pop-up flash on my 7D2 to use, and not a real external flash gun like my 580EX that I left at home. (I did mention phoning in my photography lately, right?) I'm finally going to pick up a camera that I've wanted for years that has some unique capabilities that give it the ability to power through facial shadows in daylight much better than an ordinary camera, due to its special leaf shutter design that allows it to sync with the flash at extremely high shutter speeds. Oops, I kinda gave it away there, a little, but I hope to get it soon.
Here are the photos. Enjoy, and Happy Mother's Day!
Why You Shouldn't Be Afraid of the RPLND Surgery for Testicular Cancer
The retroperitoneal lymph node dissection surgery (RPLND) is a really gruesome and highly invasive surgery for some testicular cancer patients. It can be used as a primary form of treatment for some Stage I and Stage II patients that have been diagnosed with nonseminomatous germ cell tumors (NSGCT), and can also be used as a secondary form of treatment for the post-chemotherapy management of residual masses. The surgery is horrifying to many newly diagnosed testicular cancer patients and caregivers when they first read about it. Many will gravitate towards chemotherapy thinking that it’s “easier”, but I’m here to tell you not to be afraid of the RPLND surgery. It might actually be the better option for some.
The retroperitoneal lymph node dissection surgery (RPLND) is a really gruesome and highly invasive surgery for some testicular cancer patients. It can be used as a primary form of treatment for some Stage I and Stage II patients that have been diagnosed with nonseminomatous germ cell tumors (NSGCT), and can also be used as a secondary form of treatment for the post-chemotherapy management of residual masses.
The surgery involves a long incision from the sternum to a few inches below the navel, and then one side at a time, the patient’s innards are scooped out and folded onto the other side, while the retroperitoneal lymph nodes that testicular cancer tends to spread through are removed. The average surgery time runs about 6-8 hours for a full open bilateral RPLND surgery, and the inpatient hospital stay ranges anywhere from a few days to a week or more depending on the center this is performed at. The full recovery time where you'll need to limit physical activity to heal is 4-6 weeks, but you’ll feel it for longer than that! The surgery is horrifying to many newly diagnosed testicular cancer patients and caregivers when they first read about it.
Many will gravitate towards chemotherapy thinking that it’s “easier”, but I’m here to tell you not to be afraid of the RPLND surgery. It might actually be the better option for some.
Chemotherapy Isn't Easier
First off, there’s nothing “easy” about chemotherapy and being sick as a dog for months on end. Is that really easy? The RPLND isn’t any fun either, but as miserable as the surgery and my weeklong hospital stay was, everybody muscles their way through it, and looking back at this six years ago, it was a blink of an eye compared to months of misery on chemotherapy. It’s true that I was in quite a bit of pain from the surgery for a while, but guess what? I was also in quite a bit of pain for even longer because of the chemotherapy! Some of the effects from chemotherapy are delayed and not felt immediately, and I ended up developing terrible chemotherapy induced peripheral neuropathy symptoms such as shooting nerve pain, chronic muscle fatigue and weakness issues, along with persistent numbness in my feet, and loss of sensitivity in my hands and even my skin as a whole. It took many of these symptoms years to go away, but some have remained even to this day and are fully permanent (and annoying) side-effects.
One should never underestimate the potential for long-term effects of chemotherapy. In comparison, I have zero long-term side effects from the RPLND surgery, besides the loss of fertility. This surgery is far more difficult if done in a post chemotherapy setting due to how sticky our innards can become after, and fertility can almost always be preserved if done prior to chemotherapy and at a high volume center. My ejaculatory nerve was said to be spared by one of the world's very best RPLND surgeons, but I still suffered a complete loss of fertility despite that.
Chemotherapy Has The Better Chance At A Single Therapy Cure, But Is That What's Best For the Patient?
Major institutions have favored chemotherapy for patients over the RPLND surgery because chemotherapy typically has the best chance of a single therapy cure, but this isn’t necessarily what’s best for the patient. In my case, arguably no. With my diagnosis of a Stage IIB NSGCT testicular cancer, I could have done the RPLND surgery first, but never even asked because I was too afraid of it. I jumped right into EPx4 chemotherapy, thinking it was easier. It wasn’t. Had I done the RPLND surgery first, my fertility most certainly would have been preserved, and with surgical removal doing most of the heavy lifting of ridding my body of cancerous cells, I likely would have only needed 2 clean-up round of that EP chemotherapy rather than the full-bore 4 rounds, which would have affected my body significantly less.
For young adult cancer patients, the longer view needs to be seen. We have the potential to live for many decades after our cancer fights, and thus we’ll also have to live with whatever long-term and permanent side effects develop from treatments for quite a long time. In short, my body would probably be in much better shape today and have far less dysfunction had I done the RPLND surgery first, as it probably would have allowed me to do less of that chemotherapy later. At the time, I just had no appreciation for how much chemotherapy could affect our bodies long term, but I do now.
Lower Recurrence Rates with the RPLND SUrgery
The RPLND, when done as part of primary treatments, also reduces the overall risk of recurrence, and of late-recurrences of the disease. For patients that have already been through primary chemotherapy but have residual lymph node masses > 1cm, I say don’t leave it to chance. Even if tumor markers are negative, and there was no teratoma in the initial pathology, about 1 in 10 times they’ll still find something, either active cancer or teratoma. Any active cancer that still remains after the hard-hitting chemotherapy treatments is extremely dangerous cancer to deal with, and much better surgically removed at the time of primary treatments, rather than allowing it the chance to spread and the potential for having to face the even more toxic salvage and/or high-dose chemotherapy regimens later.
Peace of Mind Matters
Not written in any literature, but there's also a huge potential peace of mind benefit to doing the RPLND surgery, knowing that you left nothing to chance, and did everything that you could possibly do. I had to think of not just what was best for me, but for my family and my two young children. I didn't want to put them through this hell again, and so if there was even one stupid little cancer cell left in my body after chemotherapy, I wanted it gone via the RPLND. I developed PTSD in my years after cancer, and at times when I was so afraid, knowing I had done the RPLND surgery and left nothing to chance, was about the only frayed thread of sanity that I had left.
I’m glad that I did the surgery, and with the wisdom of many years of cancer survivorship behind me now, I’m here to say not only to not be afraid of this surgery, but that it might actually be the better option up front than chemotherapy in some cases. Talk with your doctors, talk with other testicular cancer survivors, explore all options, and get second opinions with experts at high-volume centers for testicular cancer. It's not just your life that's on the line, but your potential quality of life that needs to be protected, too. I feel blessed every day to be here, but my quality of life is less than what it could have been. Don't be afraid to ask the questions and challenged the preconceived notions that I didn't.
StevePake.com
UPDATE SEPTEMBER 2017: I see that this blog is getting a lot of hits, so figured I would link to some old information. Before I had a website, I "blogged" much of the active fight portion of my testicular cancer journey, including my RPLND surgery adventure, at the TC-Cancer.com web forum. Click the button above to go to a big thread there where most of my pre-website cancer journey is linked, or you can just go directly to my RPLND thread. I also had a fun little time with a lymphocele complication after the RPLND surgery that you can read about also!
If you have a question or comment, please do use the contact link at my website to get in touch. This is the very best and most reliable way to reach me, I typically respond to cancer related inquiries within 24 hours if not sooner, and I'm more than happy to talk people through the RPLND surgery or anything else!
The Power of Behavioral Change and Self-Love After Cancer
I'm not afraid of cancer anymore, I no longer experience cancer-related anxiety, depression, or posttraumatic stress, and that's an achievement to be proud of when it's only taken me 5 years to get there. Personal behavioral change after cancer has been the key to that.
The vast majority of what I've written over the years about surviving cancer as a young adult, has been about empowering survivors to make the changes that they've needed to make in their lives after cancer. Cancer is not just a disease of our bodies, but a disease of our minds as well, which can be the most difficult challenge of all. I read commonly of others who are still afraid, or experiencing depression or anxiety about cancer 10 or even 20 years after it had entered their lives, which just goes to show how challenging cancer can be. This isn't a race. We all have individual journeys, but I'm not afraid of cancer anymore, I no longer experience cancer-related anxiety, depression, or posttraumatic stress, and that's an achievement to be proud of when it's only taken me 5 years to get there. Personal behavioral change after cancer has been the key to that.
That Cancer "Red Pill"
Whether seen as a disease of body or mind, cancer is relentless, and you have to be relentless right back at it. When I've realized that a way of thinking, a behavior, a philosophy, or that something or someone in my life was causing me harm, I've never been shy about tearing that down and starting over again, even if I had no idea what was next, or what I should be doing instead. It was so terrifying the first time I let go like this, but I've done so so many times now. As it turned out, one of my own worst enemies after cancer was me.
For years after my cancer fight, I had trouble accepting that "I Had Cancer." Cancer was never in my life plan, and young adults just don't get cancer. It's a terrible thing to have to deal with and have hanging over your head, all while managing careers and families. I never stopped living my life, but there was this part of me that could never accept cancer in my life, and with it came periods of depression. I'm the type that's always needed the cold hard truth about things. Deep inside, I knew the answer to my questions - I was resisting, but had to let it go and accept the truth.
The red pill: The truth is, the lifetime risk of cancer is 1 in 2 for men, and 1 in 3 for women. It's inevitable that at some point in your life, either you or someone you love is going to have cancer, and there's nothing we can do about that yet today. Cancer is just a part of our humanity. Cancer can happen to anyone, including to young adults and children. We have little control over if we get cancer or not, but we can control if we accept it or not, and how we feel about it. I relented and accepted, but only after I could hurt no more trying to deny it. I came to accept that there were never any guarantees for anyone, that cancer and so many other diseases can happen to anyone at any time, that there's nothing I could do to protect anyone that I loved or cared about from such things, and evolved my thinking and my way of life around these undeniable truths.
"Accepting cancer" was the hardest and most painful pill I've had to swallow in life, but once I did, it couldn't hurt me anymore, and my depression about it went away as I evolved my life around this new reality. Be present in every day, never waste a moment, enjoy life today, go places that you've wanted to go, and do meaningful things with your life. Tell the people that really mean something to you how much you love and appreciate them, because they might not be around tomorrow to hear it. Live your life without regrets.
There's Nothing Wrong With You
As if having cancer as a young adult doesn't make you feel broken enough, try experiencing posttraumatic stress after cancer, and get back to me. Scratch that. I would not wish PTSD on my worst sworn enemy, it's that bad and inhumane. PTSD was so bad for the one six week period where I actually had the full blown disorder and couldn't get it shut down, that if cancer wasn't going to kill me, I almost wanted to do it myself. I'd never felt more broken in my life than when I experienced posttraumatic stress, but in most cases this is very normal to experience, and is NOT something that's wrong with you, it's what's right!
We have incredibly powerful instincts that are designed to protect us from harm. If your house burned to the ground and you narrowly escaped with your life, you can't tell me that it wouldn't be "normal" to go running outside for your life whenever you smelled smoke or heard a fire engine. In the case of cancer, it's our own bodies that figuratively tried to burn themselves to the ground, yet we lack the ability to run away from and escape our own bodies when something reminds us of that danger. Maybe you see now just how difficult life after cancer can be. Our instincts tell us to run the hell away from the one thing we can't - our own bodies.
I was hurting because of posttraumatic stress, and then hurting more on top of that for feeling as though it was "wrong" to feel at all, but once again, you have a choice. I finally choose to accept what I was feeling, and embraced it and worked with it, rather than fighting against it. My posttraumatic stress after cancer told me to run away, and so I did. Almost every day for three years I went running over lunch, just to burn off this energy. I embraced it and gave myself an out, and learned to accept just how useful these instincts really are. Human beings haven't come to our position of dominance on our planet because we have poor instincts. We have extremely powerful instincts that shouldn't be told they're "wrong" or not listened to. You're only doing yourself more harm when you don't listen to what your instincts are telling you. My periods of posttraumatic stress would be followed by periods of depression because I felt so defective inside, but once I learned to accept my instincts and work with them, it made the posttraumatic stress that much easier to deal with, and I no longer suffered the secondary depression that I had. You have a choice. Choose you.
Embrace Every Bit Of Yourself Exactly As You Are
Another thing that I used to beat myself up about was being "too emotional", and feeling things too strongly. I beat myself up for being too afraid, too sad, and too depressed about an "easy cancer", when everybody thought I should be ecstatic. There were more days than I care to admit where I was holed up in the corner in tears, because I was terrified out of my mind that my cancer was going to come back, and that I was going to be next.
Well for starters, there's no such thing as a good cancer, and on top of everything else I'm also a Scorpio, not exactly known for having mild emotions. I've always had very powerful emotions, and having cancer (not the sign!) is what finally forced me to confront my powerful emotions in order to gain control over them, and make them work for me rather than against me. All of those Scorpio memes you've seen are true for me, and my mind felt like a Category 5 hurricane of emotions in my years after cancer. I could have kept beating myself up for this, but instead I learned to harness all of that energy into writing about what I was experiencing, and today I have an award-winning cancer website as a result of that.
Tell me again that there's something wrong with me for having powerful emotions? There isn't. It's just me, it's what I've always been, and finally allowed myself to be, and what I've done with it is something to be proud of.
Even hurricanes have a purpose.
Love Yourself Unconditionally
What I'm talking about in all of this, is self-love. We're all exactly as we were meant to be, we feel exactly what we were meant to feel, and all you have to do is love and accept every bit of yourself, without judgment or criticism. Why are you a certain way? Don't even question it. Our perceived faults are not flaws, and can be our most powerful assets. I didn't change my behavior to become something or someone else, I changed it to allow myself to be exactly what I was all along. After cancer, I just needed to be that person for once in my life, because cancer had already pushed me far beyond my limits. Be your own best friend, and not your own worst enemy. You can't control cancer, but you can control how you feel about it, and how you feel about yourself. Choose to love yourself. There's nothing wrong with you. You're exactly as you were meant to be, and are perfect as is.
StevePake.com
Do It Now, Sometimes Later Becomes Never
Do I even really need to post this one? It's a lesson that's been drilled home not just once, but a few times with me. I always had my entire life in front of me and plenty of time to do everything I wanted, until I was diagnosed with cancer. Ever since then, there's never been a such things as next year, or 5 or 10 years from now, or "when I retire". I don't have a life plan like that anymore. It's a foreign concept to me now, and it's not just because I had cancer as a young adult.
Do I even really need to post this one? It's a lesson that's been drilled home not just once, but a few times with me. I always had my entire life in front of me and plenty of time to do everything I wanted, until I was diagnosed with cancer. Ever since then, there's never been a such things as next year, or 5 or 10 years from now, or "when I retire". I don't have a life plan like that anymore. It's a foreign concept to me now, and it's not just because I had cancer as a young adult.
Whether it's rare diseases, or sudden deaths due to tragedy, or so many other things, my how we've seen just how quickly lives can end or change so suddenly, and then you're not able to do what you've wanted to do anymore, or anything at all. The only thing predictable about life for us, is that it's not predictable. Life is fluid and constantly changing, and we have to learn to go with the flow, and that the flow can also end, without rhyme or reason.
Life after cancer is tough. One one hand, we quickly realize just how precious our lives and our time here is, but on the other hand, our fears can rule us and paralyze us from living our dreams, and doing the things we've wanted to do. Don't allow your fears to rule you. You have a second chance now, and there might not be a third. Go! Live! Do what you've always wanted to do, and make those dreams a reality. You don't need anyone's permission.
StevePake.com
Be Kind, For Everyone Is Fighting A Battle You Know Nothing About
Although I write mainly about my life experiences as a young adult cancer survivor on my website, having cancer as a young adult is not the only major life challenge that I and my family have faced. There have been other challenges in our lives that have been just as painful as my cancer fight and years long recovery, if not even moreso. Cancer is just what I'm comfortable being open about. There's so much more.
Although I write mainly about my life experiences as a young adult cancer survivor on my website, having cancer as a young adult is not the only major life challenge that I and my family have faced. Cancer is just what I'm open about, but there are other things that I don't really talk about, because I'm not ready for people to know, don't want people to know, or I'm protecting those who do. I thought cancer would be the big story of my life, but I was wrong. If cancer is the story you know about me, it's just the tip of the iceberg at this point. There's so much more.
The point is, you never know what people are dealing with inside, nor what they've had to face in life. It's through being open about my own struggles with cancer, that others have opened up to me about their own life struggles, and I've been shocked at what some of my friends have told me of in confidence, that even their own close friends might not know about. You just never know.
Be Kind Always, For Everyone You Meet Is Fighting A Battle You Know Nothing About
People don't act out towards others in strange, inappropriate, or hurtful ways because they're doing well in life. They act out towards others because they're hurting inside, because their pain is getting the better of them, or because they're on the losing end of their own inner battle. The only times I've acted out towards others has been because I myself was hurting inside, or on the losing end of my own inner battle, and couldn't stand to be hurt anymore. It doesn't matter where the pain came from, and whether it was my own, or what I was getting from somebody else. We act out because we're hurting inside. I've been that person, and others have been that person towards me.
Retaliation is not the answer - this is:
"If you meet someone whose soul is not aligned with yours,
send them love and move along." - Dr. Wayne Dyer
People who are hurting, don't need to be hurt even more. Take some deep breathes, realize that you're dealing with a very hurt individual, send them love and forgive them for their transgressions, and step away. The most wounded, are the most in need of love, and the most in need of your compassion. Do your best for these people, not your worst.
StevePake.com
Overcoming Post-Cancer Depression
I happen to be a good baseline for what post-cancer depression can feel like, because there had never been even a single depressive ‘bone’ in my body prior to cancer. I was always upbeat and optimistic about everything, believed that there were solutions to every problem, and did not have pre-existing issues with depression or anxiety. My cancer diagnosis at the age of 33 is the first time I faced any mental health issues in my life at all, and they hit me like a load of bricks.
I happen to be a good baseline for what post-cancer depression can feel like, because there had never been even a single depressive ‘bone’ in my body prior to cancer. I was always upbeat and optimistic about everything, believed that there were solutions to every problem, and did not have pre-existing issues with depression or anxiety. My cancer diagnosis at the age of 33 is the first time I faced any mental health issues in my life at all, and they hit me like a load of bricks.
Forget About All the Statistics
First off, forget about any statistics you might have read about post-cancer depression, anxiety, or posttraumatic stress. I don't know of a single cancer survivor that hasn't experienced mental health related issues after cancer, it's just a matter of what it is, and how bad. You should never feel bad about yourself if you find yourself suffering from depression after cancer, because how could you not be depressed after something like this?
Post Cancer Depression Can Happen At Any Time
I thought I had been doing pretty well my first year or so after cancer, all things considered. I struggled in various ways, yes, but the heavy-hitting emotional fallout didn’t hit me until nearly two years later, when friends I had made started dying. Watching friends die of cancer is what finally made all of this real deep inside my mind, and not just a bad dream. Reaching two years out from my cancer diagnosis was a huge milestone. I should have felt like I was on top of the world, right? No. With one friend in the ground and another in hospice care, I was terrified out of my fucking mind, and felt like if something was going to happen to me, it was going to happen sooner rather than later, and I had the fear of God in me.
I didn't want this anymore. I was tired of feeling so afraid, tired of feeling so vulnerable, and tired of having my own body scaring the hell out of me with all of its strange post-cancer pains and behaviors, making me think my cancer had returned. I lost interest in various hobbies and things that had interested me, didn’t want to be around anyone besides my family and a few extremely close friends, and didn’t even really want to be around myself. I largely withdrew from the world, and stopped being social for a long time. I finally hit an emotional rock bottom and a very deep depression, two years after my cancer diagnosis and fight.
Nobody Could See My Depression
I didn’t stop living my life, but my inner struggles were invisible to the world. I would go out on weekends with my family, or with friends, and have the time of my life. We enjoyed great trips and vacations, and had so much fun together. But whenever we returned, this misery was always there waiting for me, the waiting, the wondering, the fear and the doubts. How could this not drag you down? I felt so vulnerable, defective, and worthless inside. I was literally damaged goods. Who would want to be around someone like me? Even I didn't want to be around me, or my body, but what choice did I have? I was so haunted inside, and just felt trapped. I wanted out of this experience and would have given everything I had just to escape this miserable life experience of continually waiting and wondering. Cancer is merciless. It will push you well past your limits until you break, listen to you screaming for mercy, and then just keep on pushing you relentlessly. The only person that could hear my internal screaming was me.
I enjoyed literally every second of this blissful week at Disney World with my family in the spring of 2013. Can you tell that I was in the midst of a terrible post-cancer depression here?
So What Can You Do?
Live Your Life Balls To The Wall. That's actually an aviation term, and nothing to do with male anatomy! Whatever you want to call it, just live your fucking life. It's okay to be a wreck, it's okay to be scared out of your mind, but never stop living your life. Don’t let cancer rule you like that. Keep living your life at full speed ahead, and don’t slow down for anybody!
Stop Worrying. I had to learn to let go. Worrying never got me anywhere, but it did distract from my ability to enjoy my time right now. I was depressed because I was so worried, and the more I worried, the deeper my depression became. It was a viscous cycle. Just let go, realize you have no control, and live your life in the moment.
Find Faith. I replaced my worry with faith. I was so afraid that my cancer was going to come back, and that I was just going to die of cancer anyways. Developing faith and an independent system of beliefs helped to relieve me of those fears.
Stop Identifying With Your Body. Repeat after me. “You are not your body.” We're so much more than that. I had to learn to stop seeing the shortcomings of my body as some sort of personal failure, and to recognize the true me for me, the beautiful soul within. Your body’s failure is not yours personally, so stop beating yourself up for that as though you’re any less of a person than anybody else. You’re not. You are beautiful, scars and all.
Find Forgiveness. Part of why I was depressed was because I feared dragging my whole family through this hell again, if my cancer were to return. I had to learn to forgive my body for failing me. This is the true nature of life. These things can happen. There are no guarantees for anybody. I stopped identifying with my body, and learned to forgive it for doing what bodies sometimes do.
Find the Right People. There are a few amazing people out there that just had a magical way of connecting with me that would immediately put me at ease, relax my fears and my mind, and help me to just live in the moment. Soulmates, soul brothers, and soul sisters, they’ve all meant the world to me. There are people out there just like this for you, too. If you haven’t found them yet, keep looking.
Find a Purpose. With apologies to my many engineering world colleagues, I knew that I was never going to make the difference in the world that I needed to make doing engineering things. My non-profit work and writing about life after cancer has been a purpose fulfilled, a great method of coping and healing for me and for others, and has reached hundreds of thousands around the world to help them heal and find their ways through this, too. If I were to get bad news right now, I know that I’ve done something meaningful with my time here, thus taking away another fear and source of depression. I've lived my life well, and have done meaningful things with it. That matters.
Periods of depression are inevitable after cancer, even many years later. You can’t necessarily stop cancer-related depression from happening, but you have the power and control over your inner and outer environments to make sure that such periods will be shallow and brief. With the right people, the right coping mechanisms, and the right inner and outer attitudes, you can power through these periods of darkness, and get back to thriving after cancer again!
StevePake.com
April is Testicular Cancer Awareness Month
April is testicular cancer awareness month, and as a 9 year survivor of this disease, I can tell you a few things about testicular cancer.The first is that contrary to what people might expect, testicular cancer is actually the #1 form of cancer in men ages 15-44 internationally, yet almost no one talks about the disease. It’s sad and frustrating that 20 years after the founding of a very famous organization in yellow by a now very infamous testicular cancer survivor, that we still have to struggle so hard for any sort of public awareness about this disease. Testicular cancer in young men is about as common as breast cancer is in young women, yet no one ever talks about testicular cancer! In the U.S. alone, someone is diagnosed with testicular cancer every hour, and someone dies of this disease every day.
April is Testicular Cancer Awareness Month, and as a 9 year survivor of this disease, I can tell you a few things about testicular cancer.
The first is that contrary to what people might expect, testicular cancer is actually the #1 form of cancer in men ages 15-44 internationally, yet almost no one talks about the disease. It’s sad and frustrating that 20 years after the founding of a very famous organization in yellow by a now very infamous testicular cancer survivor, that we still have to struggle so hard for any sort of public awareness about this disease. Testicular cancer in young men is about as common as breast cancer is in young women, yet no one ever talks about testicular cancer! In the U.S. alone, someone is diagnosed with testicular cancer every hour, and someone dies of this disease every day.
With an overall cure rate of over 90%, testicular cancer is a highly curable cancer, but it should never be considered an easy or a “good” cancer. Testicular cancer tends to be a pretty fast growing and aggressive form of cancer, and must be hit equally aggressively in order to get that cure. Orchiectomy alone, removal of the stricken testicle, can be enough to cure many Stage I patients, but the primary chemotherapy protocols and surgeries that are commonly used to treat people with metastatic disease are pretty rough, and can leave many additional physical and mental marks on people.
Regardless of the stage of the disease at diagnosis, testicular cancer is not an easy cancer to get through simply because of the younger men that it tends to strike. My 33 year-old self was unaccustomed to ever having anything more than the flu, and still believed that I was invincible and going to live forever. This loss of innocence and suddenly feeling so vulnerable at the prime of my life shattered my confidence. Mental health issues such as anxiety and depression are common, and posttraumatic stress to varying degrees is certainly not unheard of, either. Another thing that young men aren’t typically accustomed to doing, is asking for help when they need it. The rarity of young adult cancers can tend to leave survivors feeling very isolated and lost, which is why finding support from the young adult cancer community is essential. Regardless of gender or cancer type, young adults tend to face so many of the same inner struggles after a cancer fight. No one needs to fight alone.
There are a few risk factors for testicular cancer that include an undescended testicle, a family history of the disease, and being Caucasian, but most testicular cancer diagnoses simply come down to bad luck. Signs and symptoms include a painless lump or any change in size or any irregularity in the testicles. Pain or discomfort in the testicles, or any pressure sensitivity is certainly a potential sign, along with a dull ache or a sense of pressure in the lower back, abdomen, or groin. More advanced signs include significant weight loss, back or chest pain and coughing or difficulty breathing, and enlarged lymph nodes in the abdomen or neck.
Because testicular cancer isn’t preventable, monthly testicular self-exams are recommended for all men, and boys starting at 13. There are some groups out there that say not to bother, given that testicular cancer is so curable at any stage. This is terrible advice. Don’t listen to it. Just because a cancer has a high overall cure rate, doesn’t mean you should ignore any signs or symptoms until you have very advanced stage disease. I was lucky in that I actually had pain in my testicle that clued me in that something wasn’t right, and a thorough self-exam found the solid mass. Not everybody does, and that painless lump can quickly turn into a very dangerous advanced stage cancer in just a matter of months. Poor risk testicular cancer has a 50/50 cure rate, no better than a coin toss! Why leave your life up to a coin toss?
Believe me when I say that if you’re going to develop testicular cancer, you’re much better off catching it an early stage rather than late, as you’ll avoid significant trauma to both mind and body if you’re able to avoid some of the harsh treatments and surgeries that are used to cure metastatic testicular cancer.
There’s nothing to lose with a regular feel down below, and it could save your life.
StevePake.com
Barcelona 2017
Spring Break 2017 has come and gone, and we had a fantastic time in Barcelona! If it were up to me, I'd have parachuted into a cute little island in the Caribbean somewhere and just disconnected for a week. We've been through a lot in the past year. A week on a little island somewhere with my feet in the water and my ass in the sand sounded ideal, but I'm glad I was out-voted. We'd been longing to come back to the Continent for ages, and the Euro trading at about parity with the Dollar now made it a great time. Spain was amazing, and Barcelona is an incredible city. We can't wait to go back to Europe again!
EDIT March 2018 - Added FOOD PHOTOS! HA!
Spring Break 2017 has come and gone, and we had a fantastic time in Barcelona! If it were up to me, I'd have parachuted into a cute little island in the Caribbean somewhere and just disconnected for a week. We've been through a lot in the past year, and have been stressed out, burned out, have had our hearts broken, and have been pretty tired. A week on an isolated island with my feet in the water and my ass in the sand sounded ideal, but I'm glad I was out-voted. We'd been longing to come back to the Continent for ages, and the Euro trading at about parity with the Dollar now made it a great time. Spain was amazing, and Barcelona is an incredible city. We can't wait to go back to Europe again!
We scored a great AirBnB right in the downtown shopping district, which maybe wasn't such a good idea, but we had plenty of space for all of us for less than what hotel rooms would have cost. I had to split all of the photos out into two different albums. In Part 1, places visited included the Gothic Quarter, Castell de Montjuïc, Park Güell, the central park area, the beach, and Casa Milà. In Part 2, you'll find photos of the spectacular Montserrat, Basilica de la Sagrada Familia, and then the ticket only area of Park Güell.
On top of Castell de Montjuïc
A cable car going up to Montserrat
Basilica de la Sagrada Familia
One of many amazing views of the city, from Park Güell.
Everybody was very friendly, it was no problem getting around, prices were very reasonable at current exchange rates, and we all had a fantastic time. This was just the change of scenery that we needed. A group of two women did try to pick pocket one of the ladies purses and my camera bag at one point. They weren't successful and we quickly shooed them off, but other than that small bit of trouble, Barcelona was amazing!
My camera gear for the trip included a Canon 7D Mark II, Canon EF-S 18-135mm STM all-purpose zoom, a Tokina 12-28mm ultra-wide zoom (review coming), and then lastly the Canon 24mm f/2.8 STM pancake lens, although I used that lens mostly for food photos that I didn't include in these albums. With the Canon W-E1 WiFI adapter in the camera, I never needed to touch my laptop. I just pre-selected the nicer photos of the day via the RATE function on the camera, and then connected my phone to the camera with an app over WiFi, and sucked the photos straight down to my phone and posted some of them on social media more or less in real-time.
My Canon 5D Mark II full-frame camera definitely would have taken sexier looking images, but without the WiFi support it's suffering from a bit of digital rot these days, and I'd have been back to the old clunky workflow on my laptop, downloading photos to there, importing in Apple Aperture, selecting and rating, and then having to export back out somewhere. It's so much easier when you can just do it all straight on the camera and/or your phone! Also, I'm big on fill-flash, and the Canon full-frame bodies don't have built-in flashes, so I'd have had to dork around with a small external flash, which can be clunky. I do still want to get back to using full-frame cameras for travel, though, but I'm waiting for either a 6D Mark II to come out to consider, or for the 5D Mark IV to come down a bit in price, and then we'll talk.
Enough gear talk. Enjoy the photos! :)
What I Have In Common With Prince Harry - Two Years of Total Chaos, After Cancer
As an American, I tend to not pay too much attention to what members of the British Royal family are up to, but I just became a huge fan of Prince Harry. It turns out that he and I both have something in common, and that is two years of total chaos after traumatic events in our lives. For Prince Harry, it was the tragic loss of his mother, Princess Diana, 20 years ago when he was just 12 years old, and for myself, my cancer diagnosis six years ago at the age of 33.
As an American, I tend to not pay too much attention to what members of the British Royal family are up to, but I just became a huge fan of Prince Harry. It turns out that he and I both have something in common, and that is two years of total chaos after traumatic events in our lives. For Prince Harry, it was the tragic loss of his mother, Princess Diana, 20 years ago when he was just 12 years old, and for myself, my cancer diagnosis six years ago at the age of 33.
It's been incredibly uplifting for all of us involved in the mental health movement to see Prince Harry opening up about mental health struggles. In an interview and podcast with The Telegraph, the Prince admitted that he had shut down emotionally for the past two decades after losing his mother, and only sought counseling for this recently with the support and encouragement of others in his life such as his brother, Prince William, after experiencing those two years of total chaos. As the Prince described, “I have probably been very close to a complete breakdown on numerous occasions when all sorts of grief and sort of lies and misconceptions and everything are coming to you from every angle.” This sounds all too familiar.
I experienced two years of total chaos in my life as well, after cancer, and like Prince Harry, the time in which we grieve or finally express our anxiety about a situation or tragic event doesn't always coincide with the event. Sometimes, it occurs much later, like twenty years later in Prince Harry's case. My cancer diagnosis was in 2011, and from a mental standpoint and at a subconscious level, I had basically been in denial after that anything serious had really happened to me. I distinctly remember thinking to myself in 2012, the year after my cancer fight, that it hadn't seemed like that big of a deal, and might have even been easy? It wasn't, and at the time, I still didn't even know what had hit me. Consciously, I knew that what I had been through was serious and traumatic, but subconsciously, my mind still deeply in denial, wanted to see my cancer fight as a really bad case of the flu. But this was cancer, not the flu. I had become friends with more than a few other cancer fighters, and watching some of them die of their diseases along with a terrible cancer recurrence scare I experienced myself, is what suddenly made all of this real. It wasn't the flu anymore, and I'll never forget the time at the end of 2012 when all that I had experienced finally started processing.
I might have appeared orderly on the outside and like I had everything together, but that only goes to show how well we can conceal our pain. The truth is, I spent every single day in 2013 trying to stay one step ahead of PTSD meltdowns and anxiety attacks. I became depressed and withdrawn, and didn't want to be around anybody except for my family and a few extremely close and trusted friends. I was a complete wreck inside, and didn't know how to live my life or how to move forward, but fortunately, with the right friends and the right support, I found my way.
2014 was an off year. I thought I had resolved all of my inner issues and turmoil in the previous year, and went the entire year without a single posttraumatic stress episode or meltdown, only to have it return in 2015. I was so disheartened. I thought I had worked my way through everything, but I was still deeply afraid inside of my cancer returning, and didn't know how to stop being afraid. My mental health issues in 2015 were less about anxiety and posttraumatic stress, and more about depression. I felt like a failure and a huge liability to my family, and didn't know how to let go of that. In the meantime, a few friends and even family members had disappointed me immensely in years past, but I couldn't seem to let go of that either. Prince Harry described being on the verge of punching someone; I had a short list of people that I seriously wanted to throw out of windows. I didn't know how to stop hating them, but needed to let go of this because it was just dragging me down, but I didn't know how. I had to learn how to forgive myself, forgive others, and to transform myself spiritually.
You don't have to be the same person that you were yesterday, and today I'm not. I'm a much better and much more evolved person than I've ever been. Like Prince Harry, having worked through my issues, I'm in a much better place today. How did I do it? There's no single method, but running and writing proved to be my go to cures. Running outdoors specifically, with the wind on my face and scenery passing me by, gave all of the terrible anxiety that I had been feeling inside a place to go. At the same time, it was the solitary processing of my thoughts as I ran, away from the stress and distractions of work and family, that I finally began to unravel my issues and for the true healing to begin. Prince Harry took up boxing and just started having conversations with others about his issues. I started having conversations with myself through journaling, which evolved into a major essay about surviving a young adult cancer, and from there turned to non-profit writing and my own website.
As with Prince Harry's struggles, it's been through "having conversations" that's helped me to heal from my own demons, and in turn, the conversations that I have with others through my writing helps them to heal as well. The point is, there's no need for this "stiff upper lip culture" as the Princes have described. It's okay to talk about things like this. You don't have to keep it all inside, and nobody has ever resolved inner pain like this by completely ignoring it and never talking about it. We're all human beings. This is all normal to experience, especially when one has experienced traumatic events in their lives. In the case of posttraumatic stress, it's not even something that's wrong with us, but rather, what's right. It would be more abnormal to not have mental health related issues after traumatic experiences. Having them is perfectly normal. It's what makes us human.
Prince Harry, along with his brother, Prince William, and sister-in-law, the Duchess of Cambridge, have setup the Heads Together charity to promote better mental well-being. "Too often, people feel afraid to admit that they are struggling with their mental health. This fear of prejudice and judgement stops people from getting help and can destroy families and end lives. Heads Together wants to help people feel much more comfortable with their everyday mental well being and have the practical tools to support their friends and family."
With the blessing of Prince Harry, and the Duke and Duchess of Cambridge, I hope this will encourage more people and especially young men to start opening up about mental health struggles. Mental health struggles can tend to hit the testicular cancer community particularly hard, and this is a wonderful mission! Thank you Prince Harry!
StevePake.com
Longing To Feel What I Know I'll Never Feel Again After Cancer
The mental challenges that we can still face in our minds, even many years after cancer. "I've been feeling extremely restless lately, and I haven't known why. I realized I've been longing for that security that we all felt about our lives before cancer, and the restlessness is because I know I'll never feel that again. At the conscious level, I've understood and accepted this for a long time, but it doesn't mean that we don't subconsciously still long to feel that again, and that it can't affect us. A bit of depression perhaps, finding myself once again longing for something that I know I'll never feel again?
I've been feeling extremely restless lately, and I haven't known why. I realized I've been longing for that security that we all felt about our lives before cancer, and the restlessness is because I know I'll never feel that again. At the conscious level, I've understood and accepted this for a long time, but it doesn't mean that we don't subconsciously still long to feel that again, and that it can't affect us. A bit of depression perhaps, finding myself once again longing for something that I know I'll never feel again?
So, what can you do? Well, you can go to Europe now cheaper than ever!
Disembarking in Barcelona, Spain for a week of fun and adventure with my family.
We've longed to come back to the continent for a long time, but have avoided vacationing in Europe for years because of the highly unfavorable exchange rates and sheer expense. But since 2015, the Euro has been trading at just about parity with the dollar, making European vacations cheaper than they've been in well over a decade. And, here we finally are in Barcelona for a week! What does any of this have to do with a history cancer, and getting caught up in the depressive uncertainties of life? Absolutely nothing, and that's the beauty of it. "The Best Way to Survive Cancer, Is To LIVE!" So get out there and do it! You don't need anyone's permission.
Once you've had cancer, you'll always have had cancer, and there's no going back. Our minds somehow manage to buy into this myth that we're going to live forever with certainty. Since the day I heard those words, "you have cancer," I've known how painfully that this just isn't so, and how hard it can be for our minds to let go of that, as here here I am six years later still fighting echos of this false belief. I can never truly slow down, and I can never truly relax, because feelings like these come back whenever I try. Sometimes I'm tired, but I just have to keep running, because that's the only way I know how to live, and that's what brings me the only peace that I know how to feel.
What brings me peace is living my life knowing that I haven't wasted my time here, whether it's enjoying my life, and family and friends, or by doing meaningful things. But I have to be doing something, otherwise these restless and insecure feelings come back. What does that tell you? It tells me that even six years after cancer, I'm still afraid in a way, and that's okay. It's what drives me to live my life and to do what I do. Esta bien! :)
My main challenge for the next week will be trying to see how much high school Spanish I can remember while in Spain. Considering everything else we've had going on in our lives, I have to say, that'll be a challenge that I'll thoroughly enjoy! Whether something happens to me next month or in a year is out of my control, but if something does, I'll be glad that I managed to check Spain off of my bucket list, and I'll remember this trip with a smile.
Disfrutar! ("Enjoy" in Spanish!)
StevePake.com
A First of its Kind Testicular Cancer Summit, Featuring Dr Lawrence Einhorn
Bringing Survivors and Experts Together for a Weekend of Awareness, Education and Support.
Mark your calendars. October 13, 14 & 15, 2017 at the University of Colorado Anschutz Medical Center will host the first Testicular Cancer Summit. During this weekend long event we will discuss life with cancer and the many lifestyle changes that can help the healing process. Motivational speakers, keynotes on lifestyle, and support systems will all be part of this summit. We hope to see you there.
Mark your calendars for October 13-15 in Denver, Colorado for a first of its kind Testicular Cancer Summit!
As a six year survivor of testicular cancer who's also been involved with non-profit and advocacy work, there's a lot of people that I've met over the years thanks to the Internet and social media that I've not just become friends with, but that I've come to truly love and appreciate as human beings. I've longed to meet so many of these people in person not just to shake hands, but to hug and maybe shed a few tears with, too. I'd wanted to get some sort of national "Testicular Cancer Summit" going for the past few years now, but it's such a daunting task. I didn't even know where to begin, and so I never started, but the desire to do this never left me.
I was on a plane last year heading to the Far East and Singapore for vacation and to visit family, and was thinking about this idea again. How do I make this happen? There were so many people I just longed to meet in person for once. One of those people was Ron Bye, an incredible 40-plus years survivor of testicular cancer, who has been such an inspiration to so many of us. Ron was diagnosed with Stage II testicular cancer in 1975, back when it was still considered to be a death sentence. The life-saving Cisplatin drug that has saved millions of lives to date was still only in clinical trial phase then, but he miraculously survived. Ron had been a hero to me, and what I wouldn't have given to just shake this man's hand one day, and others like him.
Funny things happen in life sometimes. Who do you think just happened to be in Singapore at the same exact time as my family and I, and on his first ever trip to Asia, other than Ron Bye! You can read more about that encounter here, and what an incredible synchronicity it was. Meeting Ron was amazing, along with solidifying our friendship. Personal connections like these matter.
At the end of last year, Ron gave me a call and said he wanted to organize a testicular cancer summit. He had me at hello. We'd never discussed doing this when we'd met in person or online, but little did both of us know, we both longed to do the same thing. Ron mentioned that in over 40 years of surviving testicular cancer, he could count the number of other testicular cancer survivors he'd met on just one hand, and that it was time to change that. Another testicular cancer survivor that Ron had met over the years was Scott Joy, someone I knew very well and who was high up on my list of people I'd longed to meet in person one day also. Scott has been a force for good not just in the testicular cancer community, but for the cancer community as a whole through all of his hard work for the Livestrong Foundation over the years. Scott quickly joined our planning committee, and from there we managed to pick up Kim Jones of the Testicular Cancer Awareness Foundation as a primary sponsor, survivor Mike Craycraft of the Testicular Cancer Society, survivor and motivational speaker Steve Fillmore, and finally, Dr Phillip Pierorazio, MD, Assistant Professor of Urology and Oncology, and Director of Testis Cancer Division at Brady Urology, Johns Hopkins University. This is a great team of people, and this is going to be an amazing event!
When it comes to making these personal connections real, there's no one in the testicular cancer world that people would love to meet more than Dr. Lawrence Einhorn, and indeed, many of us wouldn't even be here if it wasn't for him. I'm one of them. It was Dr Einhorn's pioneering work with the Cisplatin drug in the 1970's that turned testicular cancer from the death sentence that it had been with a 10% survival rate, to the highly curable cancer that it is today with a 90% overall survival rate! There are hundreds of thousands of testicular cancer survivors who are alive today because of this man's work just in the U.S. alone, and the Cisplatin drug is commonly used to successfully treat other cancers as well. Dr. Einhorn has literally saved millions of lives because of his work. It'd have been tough to ever put together a summit for a disease that almost no one had survived, prior to Dr Einhorn's work. There's no one single person we'd want to honor more.
We reached out to Dr. Einhorn. He'll be there.
Not only will Dr Einhorn be attending this Testicular Cancer Summit in Denver, but he'll be delivering an hour and a half long keynote address and Q&A session on Saturday morning, to formally get the summit rolling. We could not be more grateful.
No matter how testicular cancer has affected your life, and whether you're a direct survivor, a co-survivor or caregiver, or you've lost someone that you love to this disease, you won't want to miss this life-changing event. Never will have have so many testicular cancer survivors and members of this community have been in the same place all at the same time, with so many great minds both from the survivors community and the oncology world all present. This will not just be a great event to finally get those handshakes and hugs from people that you've known for so long, but to also network and learn from the brightest minds in the testicular cancer world. This will be an unforgettable and life-changing event, and we hope that you'll join us!
On behalf of the Testicular Cancer Summit planning committee, we look forward to seeing you in October!
StevePake.com
Why I'm Not Doing Scans Anymore
There were some fascinating inter-related but completely independent conversations amongst cancer survivor friends of mine this week that triggered an interesting cross-section of thoughts.
There were some fascinating inter-related but completely independent conversations amongst cancer survivor friends of mine this week that triggered an interesting cross-section of thoughts.
A few days ago, a very thoughtful friend of mine reached out to me, hoping I would at least consider doing annual MRI scans, knowing that I had hopped off of the "scanwagon" after I reached 5 years out from good risk testicular cancer last year. A doctor we both know couldn't imagine not having at least an annual scan done, but I smiled and politely said no. I really do appreciate that this person was thinking of me like this, and it's very sweet to know that friends of mine do actually worry about me. :)
On that same topic, another group of survivor friends were discussing an article I had written a few years ago, comparing cancer surveillance scans to emergency landings in planes, and repeatedly having to subject yourself to that mental trauma over and over again, feeling so helpless without any control. We're lucky. We're cured and not six feet under, right, so we shouldn't complain, somebody always has it worse, went the conversation. But it's dismissive, said another friend. We never really know if our cancers are truly gone or not, and it doesn't mean that our lives are "easy". Most of the time we'll be fine, but there's always that chance that we'll careen off the runway and burst into a massive fireball, or not even make the runway and crash into the woods or the river. You brace as you descend below a hundred feet, not knowing what's going to happen and feeling so helpless, and that's your whole life right there, that moment of sheer helplessness. And guess what? You get to do that shit all over again next month, and the month after that, and the month after that.
It all reminded me of why I'm not even doing annual scans anymore. Because FUCK!!!!!!!!!!!!!!!!!!!!!!!! All of these scans just completely broke me, that's why. They completely broke me as a person, having to voluntarily subject myself to the same repeating emotional trauma over and over again. I've been broken enough. I don't need to be broken anymore unless there's a good reason to be. Just the thought of having to do more cancer scans brings all of those feelings of having been so broken right back to the surface. I just couldn't do it anymore, and so I'm not. Fuck it.
Granted, my tune would change if I'd had advanced stage disease in a higher risk category. I do firmly believe that those that had advanced stage testicular cancer should be followed at least annually for life, but I luckily didn't. Not only was I "merely" good risk, but I did both primary chemotherapy and the primary lymph node dissection surgery by one of the top doctors in the world for that surgery, thus bottoming out the odds of ever having a late recurrence. If I'd left that 1.4cm lymph node, maybe my tune would be a bit different also, but no. At the time, when I was fighting, if there was even one fucking little sleeping cancer cell left in there that would come back and try to kill me again one day, I just wanted it gone. And so I did the RPLND surgery, and boy did it cost me, but I did it. So no more scans for me, thank you very much. I'm still getting an annual blood tumor marker check and a scrotal ultrasound on the remaining side with my annual physical, which is, enough. More oncology office visits though? No. Fuck that shit. I'm done. I just couldn't do it anymore, and so I'm not.
I'm at a place in life right now where I just need to move on and forget about all of this shit that's happened in my life. The reason I sat down at my computer night after night and just BLED into the keyboard like crazy, is because I needed to get this out of me, it helped to heal me, I knew it would be a huge help to others, and knew there would come a day when I would overcome all of this spiritually, and that finally, I would start to FORGET. And that's where I'm at now. I've forgotten all of this for awhile, and it needs to stay forgotten for awhile. I can't read much of my own writing right now, about scanxiety, or about PTSD, because it takes me back to such unbelievably dark and painful times.
Looking back on this, and these times, I can't tell you how unbelievably good it feels to NOT BE BACK THERE again. Doing scans again, even an annual MRI, would put me back there. It's the wrong direction I need to be going in, and just notfuckinghappening dot com. ;)
StevePake.com
Katie's 10th Birthday Photo Shoot
My daughter turned 10!!! She's such a sweetie, and a panda mommy too! The weather was super nice out, so we went outside and did a little photoshoot of her.
My daughter turned 10!!! She's such a sweetie, and a panda mommy too! The weather was super nice out, so we went outside and did a little photoshoot of her. The lighting was tricky to work with through the trees and shadows created from the branches. I used my Canon 5D Mark II full-frame camera for these, and then the 35mm f/1.4L, 135mm f/2L, and the 17-40L for a few too, along with a 580EX flash for fill. These were very tricky photos trying to balance all of the light together, but I'm pretty pleased with how they turned out. :)
HAPPY 10TH BIRTHDAY TO KATIE! WE LOVE YOU!!!! <3
DC Cherry Blossoms 2017
I'm sooo behind on posting photo albums on here. There's lots of fun stuff I've wanted to share from last year, but just no time. We did get down into D.C. today to enjoy the famous Cherry Blossoms of the Tidal Basin.
I'm sooo behind on posting photo albums on here. There's lots of fun stuff I've wanted to share from last year, but just no time. We did get down into D.C. today to enjoy the famous Cherry Blossoms of the Tidal Basin. They took a huge hit from freezing weather after they had already started to bloom, but it was still very pretty! Thick overcast and no clear blue skies actually took away from the cherry blossoms more than the cold weather hit did, but again, still very pretty. The crowds were so thin early when we got there that we actually got done with our walk around the Tidal Basin early, so a stop for a bit at a Paul's bakery, and then onto brunch at one of our fav's, Acadiana.
Photo gear: Canon 7D Mark II, Canon 18-135mm STM all-purpose zoom, Tokina 12-28mm f/4 ultra-wide, and the Canon 24mm f/2.8 STM pancake lens for food photos. I've just recently picked up the 18-135 and 12-28mm lenses, so trying them out a bit and pretty pleased. Enjoy the photos!
UPDATE: A few somewhat sunny photos have been added to the end of the album from closer to home.
Over The Moon!
I got this really cool moon photo on March 9th with my Canon 7D Mark II and Canon 100-400mm L II lens.
I got this really cool moon photo on March 9th with my Canon 7D Mark II and Canon 100-400mm L II lens. I had been watching planes criss cross the sky one day, and realized if I had my camera out maybe 30 minutes earlier, that I might be able to get a plane going directly across my field of view to the moon. I didn't get one of those, but really loved this one, "Over the Moon!", right as the sun was setting giving some nice glow and color to the moon and sky.
A 400mm lens works out to 640mm equivalent on a Canon APS-C body (focal length x 1.6), and a Canon 7D Mark II body is 20 MP. The cropped final image here is 4.7MP, so still quite a bit of cropping even at 400mm. I'm planning to eventually pickup a Canon 1.4x Extender III, which would put this combination at nearly 900mm equivalent for some even better moon, plane spotting and airshow photos. :)
Inside Our Minds When There's a Recurrence of Cancer - With Nalie Agustin
In my years after cancer, I experienced several recurrence scares that were so bad and so real, that I thought for certain that my cancer had returned, that I had just lived my last good day, and that I was going to die. This is what's going through our minds when there's a cancer recurrence, real or imagined, captured with the help of breast cancer thriver, Nalie Agustin
Note to friends and family. No, my cancer hasn't come back!!! I'm just writing about the topic. Okay to breathe. ;-)
So, 2016 wasn't exactly the best year for my family and I, but you know what? My cancer didn't come back, so that sort of put things in perspective. While we weren't dealing with cancer, we were in the midst of handling not one but three different terrible crises within our own family or with near and dear friends, all of which were tremendously painful to experience and sort out. While we still had a great year, it really put a damper on things and our spirits.
Nalie Agustin, Young Adult Breast Cancer Thriver at Nalie.ca. Image used with permission.
Sometime during 2016, I managed to discover Nalie Agustin, a breast cancer survivor with an unbelievable spirit, vibe, and energy about her. I quickly became addicted to her bubbly excitement and enthusiasm for life, and loved seeing all of her Insta Story updates living the good life, enjoying times with friends and family, celebrating birthdays, and getting the inside scoop on all of her big plans and dreams that she was working so hard to make happen. Nalie's energy was simply infectious - you just couldn't watch any of her updates and not smile. I've never met Nalie personally, but during a time when my own family was hurting so badly, Nalie was one of a few people who managed to keep me going by constantly reminding me of how life was meant to be lived after cancer.
As the New Year of 2017 rang in, I was just as excited about getting back on track to make some of my own dreams happen as I was for Nalie's. She was working so hard on launching her own YouTube show, lining up tons of guests, and was finally on the verge of launching it, when...
Nalie found out that her cancer returned on Friday, January 6th, just days before she was to launch her show.
Full Stop. Everything on hold again, and devastation.
Nalie published a 10 minute video a few days after she found out, about everything she had been feeling. If you want to know what cancer survivors fear and what we go through when a recurrence happens, this is the video that you need to watch. The message is driven home even more for those of us that know Nalie, even if just through social media. To see this beautiful young soul, and shining star for young adult cancer survivors everywhere, go from being all pumped up and excited about everything she was hoping to finally make happen in 2017, to being ground to a halt and dampened by a recurrence of her cancer, was simply heartbreaking.
Give her video a watch.
Every single thing Nalie speaks of in her video, I myself have felt and feared. I'm very fortunate in that my cancer has never returned, and I pray that it never does, but I've very much been "here" before, spiritually and emotionally. In my years after cancer, I experienced several recurrence scares that were so bad and so real, that I thought for certain that my cancer had returned, that I had just lived my last good day, and that I was going to die. One scare I had was so bad that it triggered six solid weeks of PTSD, and it opened the floodgates to every unprocessed fear and emotion about cancer that I'd unknowingly repressed at the time. It took me an entire year to recover from that.
Here are all of the things that we feel when there's a recurrence, real, imagined, or otherwise.
- Shock and Disbelief. How could this be happening to us again? Young adult cancers are rare. We're unlucky enough to have cancer the first time, but how could we be so unlucky to have a recurrence of it and have to fight again? We have the worst possible thoughts, of possibly not emerging out the other end alive, and that we might have just lived our last good days. As a parent, the times I've had recurrence scares, I've always thought of my children, and of making video messages for them for later in their lives so that I could still be there for them in some way, even if I didn't make it. Death instincts. I could never even think of what to say, as the mere thought was just so distressing that I collapsed in tears.
- Frustration. When we know there are others out there that are abusing themselves, and smoking and doing all sorts of drugs, but our cancer is the one that comes back? Why us??? I never smoked or drank or did anything prior to my original cancer diagnosis, so how the hell am I the one that even got cancer in the first place? That's a question that I had for a number of years, and the only answer is simply bad luck. This is life. There's never been any guarantees for any of us, and things like this can happen. It's a tough and bitter pill for young and invincible adults to swallow.
- Fear and Sadness. When there's a recurrence of our cancer, we've been through all of this before. We know just how brutal a cancer fight is and can be, and the naivety is gone. We know what can happen and we're so afraid, and so sad at the same time. We're sad for ourselves, but sad for our families and loved ones as well. When I've had recurrence scares, I felt so ashamed and worthless. I didn't want to drag my family through a terrible cancer fight again, didn't want to be a burden, and especially didn't want my children to have to see me. They were too young to know what cancer was before. All they knew was that their daddy was very sick for awhile. They're older now and they know what cancer is, and that people can die from this.
When I thought for sure that my cancer had returned a few years ago, I just wanted to run away from the world and hide. I wanted to be driven out to the countryside somewhere and left to die. If I was going to die from cancer, I just wanted to die alone, and didn't want anyone that I loved or cared about to have to witness me dying a slow and painful death from cancer. Hey cancer, if you're going to take me, just take ME, and don't put my family through this. That's what I wanted, and I had never been more depressed in my entire life. I felt so worthless that I didn't want to be around anyone at all, not even my own family.
- Resolve, and the Return of the Warrior Mindset. What I loved seeing at the end of Nalie's video, though, was the return of that warrior mindset and fighting spirit that we all have inside. This is something that we gain when we're fighting cancer without realizing it. You think you can't do something, but I'm telling you that there's a warrior deep within all of us, and it's what allows us to get through chemotherapy and radiation treatments, and it's what allows us to jump right into highly invasive surgeries with weeks long recovery times without so much as batting an eye, because there's no way in hell cancer is going to rob us of our lives.
Two weeks after my orchiectomy for testicular cancer, we had pathology results and scans done, we knew what we were dealing with, had consulted with the very best doctors, and had a plan to move forward. I didn't have time to be afraid anymore. I just had to fight, and win. I never expressed even a lick of fear going into 12 weeks of brutal chemotherapy, and after post-chemo scans showed a residual mass, I never expressed even a lick of fear going into the RPLND surgery, either. I was a warrior, and I didn't care what I had to do to beat this stupid cancer. I had a life and a family to get back to, and there was no way in hell cancer was going to take me away from all of that. Little did I know just how afraid I really was. The warrior spirit overpowers everything, including our fears.
- Relapses are Terrifying for Supporters As Well. I've long said to others that the cancer community and support groups can be a double-edged sword. On one hand, it provides us with invaluable support that simply can't be found anywhere else. There are so many things about fighting and surviving cancer that only other cancer survivors can understand. We can't be without this support, yet, seeing others experience recurrences of their cancers and friends not making it, can shake our wobbly post-cancer foundations. This is what makes it real. This isn't the flu that we're getting over. Yes, our cancers can come back, and yes, people can die, but it doesn't mean that you will too.
As Nalie says in her video, just because she's experienced a recurrence of her cancer doesn't mean that others will too. Indeed, it was partly the stories of a few cancer survivor friends that had experienced recurrences, that had spooked me so badly into believing that my cancer had returned as well, and that I was next. We connect with each other so personally, and can have such close emotional and spiritual bonds. But what's going on in another's body is within their body only, and has nothing to do with yours. What can you do? Pray, yes, but just keep LIVING every single day that you have.
- Love Conquers All. Just as you don't fight cancer by yourself, you don't fight a recurrence of cancer alone, either. You need a Crew, an Army, or an all of the above support system. As painful as it had been to see Nalie go through this, it's been inspiring all the same to see her family, her parents, her brother, her boyfriend, Vee, and so many friends and "Nalie's Army" all rally by her side, and to fill her life with so much love. It's what tells us you're worthy, you're loved, you're cared for, and we need every bit of that, because of how worthless we can feel.
Similarly, my recurrence scare triggered the sudden release of every single fear I'd never felt, because my warrior spirit had locked them all away. I felt like I was falling off of a cliff and as good as dead, only to be lifted up by angels. My wife rallied to my side, my children inspired me, friends new and old were there, including ones I didn't even realize I'd had, all suddenly appearing at the exact time I needed them, and I'll never forget this or these people for as long as I live. These beautiful souls rescued me from a great spiritual abyss, like a relay team of angels in my life, and some of them had no idea of the role they were playing. Talk about inspiration.
FIGHT LIKE HELL, NALIE!
I believe with all of my heart and soul that you're going to beat this, because you have so much to do in this world. 2017 might not have started how you had hoped, but this is not your time. You have so much to do, and we in the young adult cancer community everywhere are with you, and believe in you.
Blessings and Godspeed from myself personally, another Scorpio young adult cancer thriver, and from all of us at the Testicular Cancer Awareness Foundation!
You can learn all about Nalie and her journey here.
She still launched her YouTube show, by the way. Love it!!! :-)
StevePake.com
The Young Adult Cancer Time Warp
Most people experience the various stages of life in a relatively linear and predictable fashion, but what happens with all of this when you're diagnosed with cancer as a young adult? Forget about an early midlife crisis. This entire linear progression of time and life stages are blown sky high, and you experience an "entire life crisis" all at once.
How Most People Experience Life Stages
Most people experience their lives and its various stages in a relatively linear fashion. We're children and adolescents, and then become young adults. We finish schools, are building our lives and launching careers, and are getting married and starting families, too. In middle adulthood, we're maximizing our potential and trying to make a difference in the world, and trying to raise children that will become successful and productive members of society also. In late adulthood, we can finally slow down a bit, reflect back on all of our accomplishments, and enjoy life a bit more. Failure to achieve what we feel we were meant to achieve at one stage, can lead to problems and the inability to progress through the next. All of these life stages are described in Erik Erikson's Stages of Psychosocial Development, which is good background reading. Most people are already at least somewhat familiar with these stages, as the popularized "midlife crisis" represents what many experience at some point as they transition towards middle adulthood, perhaps feeling as though they hadn't lived as fully as they had hoped in their younger years. Sound familiar?
How Young Adult Cancer Survivors Experience Life Stages
All of this is very normal, but what happens with all of this when you're diagnosed with cancer as a young adult? This entire linear progression of time and life stages are blown sky high, and you experience an "entire life crisis" all at once. When I was diagnosed with cancer at the age of 33, I genuinely feared that I was going to die. After I didn't get a complete response to my cancer from chemotherapy alone, I nearly did die from a serious complication during a highly invasive surgery trying to evict the stupid cancer cells that way. And I once again feared death after a terrible recurrence scare in the years after. My end of life "death instincts" kicked in numerous times through these years, and what did I have to reflect back on? I feared that I had suddenly and abruptly reached the end of my life, but didn't really have anything to show for myself. How had I really lived? What had I really done? What kind of difference had I made in the world? How had my life been meaningful? These are questions that those in late adulthood might face, but instead I was facing them now, as a young adult. I didn't have any answers, and I was panicked.
At the same time I'd been facing those end of life questions, I felt like I hadn't been living and enjoying my young adult life to anywhere near its potential. I had terrible regrets for having lived my life so conservatively at the time of my cancer diagnosis, thinking I had all the time in the world to enjoy life later. Cancer made me realize that I didn't, and I had to start enjoying life at full speed right now, because there might not be a later. I needed to be young, wild, and free for once in my life, but I had yet more questions that needed to be answered also. What was I really meant to do and accomplish in this life, and how could I make a difference in the world at the same time? How could I bring meaning into my life? These were the "Generativity vs Stagnation" questions of middle adulthood per Erikson that I was also simultaneously facing, and for which I had no answers, either!
I've joked to friends for years that I'd already had my midlife crisis very early, thanks to cancer. As I look back on all of this, I realize what a short shrift that was of what I really experienced. Young adult cancer is really an "all adult stages of life crisis" all at the same time, and this explains the panicked rush that so many of us feel to really live our lives and accomplish our dreams so quickly after cancer. Life becomes a time warp where we feel the need to engage with and accomplish things at all of the adult stages of life, all at the same time. All of the plans we'd had for our lives, and all of the things we'd planned to do when we were younger or older, all becomes right now, and it's completely overwhelming.
Feeling Conflicts From All Adult Stages of Life at Once is Normal
I want you to know that all of this is normal to experience. You're not going to have all of the answers, but be true to yourselves. Listen to what your hearts are telling you, and not what others are telling you, nor what societies and cultures expect of you. Just be you, and nothing but you. Keep your hearts and your minds open, and you'll find the answers that you need with time. Be courageous. It can be difficult or even terrifying to make the changes and major course corrections that might be needed, but sometimes what you're most afraid of doing is the very thing that will set you free.
Cancer survivorship can bring with it moments of clarity, where you might realize you've been headed in the wrong direction, or living your life the wrong way. This is what it can feel like to change course, but it's also what will really set your soul free.
You're not going to figure all of this out at once. You can't; it's impossible, so don't demand that of yourself, and don't beat yourself up when you don't know. You have to let things come naturally. I didn't realize it at the time, but I just needed to be incredibly productive in some way, and tapping into my inner talent for writing and expression for young adult cancer advocacy non-profit work just came naturally. I've felt very fulfilled doing this, but ask me when I realized that this was something I really needed to do? It took me a few years after cancer to figure it out, and it might take you a few as well. You don't suddenly wake up one day as a young adult cancer survivor with an epiphany and vision about all that you need to do in this world. I've had some moments of clarity like that, but they've represented smaller pieces of a larger puzzle.
All of this takes time when we feel like we have none, and hence the panicked rush of young adult cancer survivorship. If you can't figure things out, DON'T WORRY. Just live and enjoy your life! I figured that out first; what to do with myself came after.
Where Am I Now As a Six Year Survivor?
I know some normal people that have done really stupid things, and have made extremely poor decisions for themselves as they've reached midlife. I've reassured family and friends that as I approach 40, I'm not going to be having a second midlife crisis this year. But if that's not where I'm at, then where exactly am I?? That's when I realized that a part of me is actually reaching not middle adulthood this year, but rather late adulthood instead!
As I exit my young adulthood and six years of cancer survivorship this year, I see what I've really been through at a very high level for the first time. On one hand, I'm very proud of all that I've done and achieved as a young adult cancer survivor through what was actually a first highly productive generativity phase in my mid to late-30s. Cancer put me far ahead of the curve, and because of that, I'm now feeling the wisdom and satisfaction that comes with the "ego integrity" of late adulthood when you feel as though you've been successful in these earlier stages of life. And how bizarre is it that I feel this at the tender age of 39 rather than 65, on this warped young adult cancer time scale?! There's so much more that I'd like to do, but if cancer were to take me now, I'm at peace with all that I've done and accomplished. On the other hand, I'm only turning 40 this year. I very much have a second life and a second generativity phase at my disposal. I have no idea what I'll do, but I'm not slowing down too much and plan to make the most of that, too.
Young Adult Cancer Survivorship Is A Very Different Life
Young adult cancer survivors are on very different paths through life than most. It's normal to feel the conflicts of and the need to engage with all of the adult stages of life at once. It's a mess to sort out, and some have to make the ultimate leap far before their time. I know just how blessed I've been with the gift of time to figure my life out, such that I've been able to live a fulfilled life here in this realm. Not everybody is granted this, and I know this, so perhaps this gift of time has been my greatest gift and blessing of all. I pray that you'll have this time as well, and that hopefully my words of wisdom can help to ease a bit of this inner conflict, and that it can help to expedite your path to living a more fulfilled life in our time warped young adult cancer world.
God Bless.
StevePake.com