PTSD After Cancer Part III - Managing Life After
In Part 1 of these essays, I described what posttraumatic stress felt like to experience, and in Part II, I described the various things that I did to cope with and recover from it. In this final essay, I'm sharing the things that I've done to manage my life after suffering from posttrauamtic stress after cancer.
PTSD will hollow you out inside. After these fires had raged inside of me for six solid weeks, there was nothing left of me but smoldering piles of rubble. My mind was scattered into a million pieces on the ground, and I hadn't a clue on what was supposed to go where, nor what the final picture was even supposed to look like. I was just gutted. As much as my life changed after being diagnosed with cancer, it changed just as much if not more after I started suffering from posttraumatic stress in the years after cancer.
PTSD After Cancer Part I - What It Feels Like
PTSD After Cancer Part II - Coping and Overcoming
PTSD After Cancer Part III - Managing Life After
In Part 1 of these essays, I described what posttraumatic stress felt like to experience, and in Part II, I described the various things that I did to cope with and recover from it. In this final essay, I'm sharing the things that I've done to manage my life after suffering from posttraumatic stress after cancer.
1. POSTTRAUMATIC STRESS IS NOT WHAT'S WRONG WITH YOU, IT'S WHAT'S RIGHT
If your home burned to the ground and you lost everything, and only narrowly escaped with your life, you can't tell me that the smell of smoke or the sound of a fire engine coming down the road wouldn't make you cringe, and possibly want to run out the door. This is a normal, healthy reaction to traumatic events in our lives. Human beings haven't evolved over billions of yeas to our position of dominance on our planet because we have poor instincts. We actually have extremely powerful instincts, and posttraumatic stress represents our protective instincts kicking in, trying to remove us from harm and situations that are perceived as threatening. You should never feel ashamed if something or someone that reminds you of a traumatic event, makes you feel afraid months or even years after the traumatic experience. It matters not weather it was a house fire, a plane crash, a war, or fighting cancer; when we experience things that remind us of our past traumatic experiences, it's the same protective instincts that kick in, trying to remove us from perceived harm.
If something or someone reminds you of a traumatic experience, you're supposed to be afraid, you're supposed to want to run away, or hide, or fight back. Posttraumatic stress isn't what's wrong with you, it's what's right! It's a sign that all is well, and that your mind is working exactly as it should be!
2. POSTTRAUMATIC STRESS IS NOT "PTSD"
There's a huge problem with perception out in the world with how posttraumatic stress is perceived. Posttraumatic stress after a traumatic event, such as fighting cancer, is very normal. Such episodes might last anywhere from an hour to a few days, or maybe a week. Full blown posttraumatic stress disorder is when you have all of the symptoms of posttraumatic stress for extended periods of time, several weeks or more, and that never seem to let up even after being removed from the stimulus that had triggered the posttraumatic stress episode. This is a very serious situation that requires professional help or treatment, but because any sort of posttraumatic stress is generically only referred to at "PTSD", too many people feel like there's something wrong with them when there isn't, and might be more reluctant to seek the help and support that they need. Rest assured that feelings of posttraumatic stress after cancer are very normal to experience, and that there’s absolutely nothing wrong with you. These are our self-protective instincts coming to the surface, trying to remove ourselves from situations that have been perceived as being threatening.
3. ACCEPT WHAT YOU'RE FEELING
The extreme feelings of fear and anxiety that posttraumatic stress can cause us to experience come from our sub-conscious, and thus we have no conscious control over such feelings. We can't just tell ourselves to not be afraid. All we can control is how we consciously react to these sub-conscious feelings and instincts that come to the surface. We can beat ourselves up, and berate ourselves for being afraid when we feel like we shouldn't be, but this is denying ourselves. We're hurting inside, and beating ourselves up just makes things even worse. A far better approach is to simply accept what we're feeling, without criticism or judgment. Instead of criticizing yourself for being afraid, simply accept that you're afraid, and try to find healthy and productive outlets to channel those feelings into. Write about how you feel, or dump this energy into an exercise routine, for example.
4. STAY CLOSE TO YOUR COPING ROUTINES
As suddenly as the posttraumatic stress mechanism in our minds can be switched off, it can also switch back on again. Thus, it’s very important to stay close to whatever routines you’ve developed to help manage your posttraumatic stress. I took to running as a form of therapy to help manage mine, and I always made sure that my running shoes and clothes were prepped and ready to go so that there wouldn’t be any delays, should I suddenly need to go for a run. If I’d come home from lunch dealing with PTS issues in my mind and didn’t have my running gear ready to go, that’s 30 minutes wasted trying to track everything down with that terrible, panicking, freewheeling energy burning me up inside. It’s best to have ready-to-go “turn key” coping methods at your disposal that you don’t even have to think about, whenever the need arises. Stay close to your coping routines.
5. STAY CLOSE TO PEOPLE THAT BRING YOU COMFORT
As important as it is to stay close to whatever routines you’ve developed to help you cope with your posttraumatic stress, it’s important to stay close to the friends and people that help you to cope as well. Most people in my life genuinely cared about me, but just didn’t know quite what to do for me, or how to support me. Posttraumatic stress was just as foreign for them as it was for me, and some tended to shy away simply because they didn't want to cause any harm. There was a highly select group of people that just “got me” in some way, as though there were a very deep soulful connection in play that just engaged naturally when I needed it to. With or without having ever experienced anything that I had or not, these friends of mine have always known what to say and do, and not once have they ever run afoul of me or done anything that’s come even close to upsetting me in the years that I've now known them. These are the people that I needed to spend my time with, because they helped me feel normal and at ease, and gave me a break from this terrible hurricane in my mind. To have friends and people in my life that could help me forget all that I was in the midst of during such a terrible storm, was an unbelievably great gift and blessing to have. These select friends of mine know who they are today, and it’s a very deep and soulful love that I have for them.
6. NEVER STOP LIVING AND ENJOYING LIFE
Don’t ever let posttraumatic stress keep you down, and stop you from enjoying life. As I wrote in PTSD Part II, I pushed hard against the boundaries that posttraumatic stress was trying to keep me within, and made sure to get out with friends that I felt fully comfortable around. This is why it’s so important to have or find friends that really get you, even if you don’t understand how or why. Go with what feels right, even if you don't understand. These friends of mine helped to rescue me from the inner turmoil in my mind, and allowed me to keep busy, keep active, and keep enjoying life even during these times of great distress. The best way to survive cancer, is to LIVE!
7. Find little things to enjoy everyday.
When I was suffering from posttraumatic stress, I felt like an endangered species and like my life was being threatened everyday. As those of us that have experienced this have felt, posttraumatic stress can feel like you're walking around with a loaded gun pointed at your head constantly. You feel like a marked man, and the level of stress I felt from this were unlike anything I had ever experienced in life, even while fighting cancer! Weekend activities with family and friends, and vacation planning wasn't enough. I needed to find little things that I could enjoy everyday, and that gave me some sense of comfort and happiness. You have to eat everyday, so why not eat well? Treat yourself daily. I’ve become a well-known foodie to friends, and post all sorts of food pictures over social media and especially Instagram, when I had almost never done so before. I tried to pinpoint the time that I really got into food and became a foodie, only to realize that this was borne out of my posttraumaitc stress, and my desire to find things that I could enjoy in life everyday, no matter how small. A nice "last meal" everyday, because at the time, I felt like it could be.
8. THE IMPORTANCE OF SELF-LOVE
For years, I lectured myself and beat myself up for being afraid, when logically I knew that there was no reason to be. I had a highly curable Stage II cancer. I went through a chemotherapy protocol that was a virtual guarantee of being cured, and then did the retroperitoneal lymph node dissection surgery on top of that for good measure. If there was even one stupid little sub-detectable cancer cell floating around my body after four rounds of chemotherapy, I just wanted it gone. I know what the stats are; I’ve read the medical literature. Almost no one whose had a Stage II testicular cancer that does both primary chemotherapy and the RPLND surgery ever experiences a recurrence, yet I was still so afraid and terrified. Allow yourself to be. Don't fight yourself! Love yourself by accepting what you feel, without judgement or criticism. Beating yourself up for what you feel just compounds the pain and makes things worse, and your sub-conscious will never let go of what it feels. Stop denying it. Love yourself, forgive yourself, accept your feelings, and work with them rather than against them. Be your own best friend.
9. FIND SOMETHING TO BELIEVE IN
My lack of firm spiritual beliefs ended up being another source of pain and difficulty for me in the aftermath of my cancer, and especially while dealing with posttraumatic stress. What makes the aftermath of cancer so terrifying? It’s because we fear our cancers will return, and that we’ll die. Firming up my spiritual beliefs helped to take the wind out of the sails of my fears of death, which in turn helped me to stop being afraid. We live in a society today that seemingly shuns religion and spiritual beliefs, and looks upon them with contempt. Yet, it’s my own independent spiritual beliefs that I fully developed and embraced that helped me to overcome my posttraumatic stress issues, and fears of dying of cancer. In the crazy world we live in today where mental health is at the forefront, why are we shunning and vilifying things such as religions and spiritual beliefs that can help us feel more at peace, and understanding of our place in the world? I feel that this is a huge mistake. If you’re suffering from anxiety, depression, or posttraumatic stress, but don’t have firm spiritual beliefs, reconsider why you don't, and that the lack of such beliefs might actually be contributing to the very anxiety that you're suffering from. This was the case with me.
10. TIME DOES HEAL
I've been asked, and I don’t think you can ever completely heal or cure yourself from posttraumatic stress, but it does get easier with time. Once you’ve been through a traumatic event or two in your life, and associations are made that trigger these fiercely protective self-preserving instincts, it can be difficult if not impossible to break them. That said, I have broken some associations, with extreme difficulty, but to this day I don’t think I could casually walk back to the infusion lab of my oncologist’s office to say hi to some of the wonderful nurses that I know back there, without breaking out into a nervous sweat, or my heart rate jumping through the roof. The mere thought of it sends shivers down my body, and that’s still posttraumatic stress in the background. I'd have to do something to break that association, but I can’t un-experience all of the hell that I’ve been through fighting cancer, such that the associations were never made in the first place.
As time has gone on, the posttraumatic stress reactions have become much less intense, my sub-conscious has seemingly become a bit more trusting of my conscious ability to keep myself out of danger, and plenty of positive memories made in the passing years has helped to write over the painful memories of the past. Another thing I had feared? Never really getting to live and enjoy my life. I've done that and then some in the past few years, and this has brought me a great sense of peace and comfort as well.
The best you can do is love yourself, care for yourself, forgive yourself, be your own best friend, and cope as best you possibly can. Finding the help that you need, the friends that know how to support you and make you feel right, hobbies and activities that serve as effective outlets, and that keep you present and engaged as much as possible, are all a part of the "cure" for posttraumatic stress. There's a reason why the center photo below appears on my homepage, as it represents all of the above in one photo. An enjoyable activity with my family, and with friends that just get me and that have always made me feel right.
Final Thoughts
When I first started suffering from posttraumatic stress in my years after cancer, I scoured the Internet, but couldn’t find even a single real-life accounting and example of an actual cancer survivor experiencing posttraumatic stress. I had no idea if this was something that others had experienced or not, what it even felt like, nor how anyone might have managed to find their way through it. All I ever found were dry, clinical sounding pages that merely listed the symptoms. I never felt more alone in my life, not knowing what to do, nor if there were even anyone else out there who had experienced what I had. I think after experiencing posttrauamtic stress, that most people just don’t want to think about it again after they get through it in whatever way they manage, or don’t even know how to begin describing what they had felt inside. This leaves a great knowledge gap and void, and it's one that I wanted to fill with this writing. The world now has a first-hand accounting of a cancer survivor that suffered from post-traumatic stress, what it felt like, what it took to pull themselves through, and all that's been done to manage life in the aftermath.
Many tears and bottles of wine went into the making of these essays. It took me two years after I had started experiencing posttraumatic stress to even begin writing them at all, and over a year of writing in bits and pieces to get these series of essays together, because small bits at a time was the most I could handle. I’m currently five years out from cancer as I write this, and three years out from the point that I started suffering from posttrauamtic stress, and I finally feel completely at peace and at ease with everything. It’s my hope that these essays find their way to those that are suffering and in need of perspective, and that the sharing of my experiences helps others to find their way through this and heal, as I have.
God bless.
StevePake.com
PTSD After Cancer Part II - Coping and Overcoming
This is Part II of my three part series of essays on my struggles with post-traumatic stress after cancer. In Part I described what the whole experience felt like, and in this part I'm sharing the story of all that I did to cope with and overcome it, and all of the wonderful people that helped me get there. Fighting cancer was the easy part. Recovering from PTS after cancer is so much harder, because at first you have no idea who or what you're fighting against, only to realize it's you.
This is Part II of my three part series of essays on my struggles with post-traumatic stress after cancer. In Part I, I described what the whole experience felt like, and in this part I'm sharing the story of all that I did to cope with and overcome it, and all of the wonderful people that helped me get there. Fighting cancer was the easy part. Recovering from PTS after cancer is many orders of magnitude harder, because you have no idea who or what you're fighting against, only to realize it's you.
Post-traumatic stress gives you the feeling of internal panic as though your house were on fire, with you in it, but there's no window or doors in which to escape, and you can't simply run outside. It's your mind that's on fire, where you live, and it's all going up in flames. You’re panicked because you feel trapped and don’t know exactly what you’re supposed to do, or if you can even escape. When I first started suffering from post-traumatic stress after cancer, this is exactly what it felt like to me. I didn't understand what had started the fire, nor what was feeding it. I just knew that my mind was on fire, and had to do whatever it took to save myself.
PULLING THE PLUGS
As I look back on my journey through post-traumatic stress after cancer with the wisdom that a few years have brought, it's very clear to me now what had been going on, what my sub-conscious mind was seeing and feeling, and what my triggers had been. At the time, however, I hadn't a clue. I was blindsided and dumbstruck. There had been some signs earlier in 2012 of the trouble that was brewing within me, but I thought I had been doing perfectly fine. It wasn't any one thing that set me off, but rather a seemingly perfect storm of bad external stimuli that had hit me from all sides at once that did it.
With my mind ablaze, I did the only thing I knew I could do at the time, and just started pulling the plugs, on everything. Anything and anybody that didn't need to be in my mind or in my head space, just needed to get the hell out. The news and its daily death count and all of the terrible goings on in the world is enough to get even normal people on edge, and that was the first to go. I've not been a consumer of what they call "the news" for three years now, and haven't missed it for a day. Television and the Internet were all shut off, and I simply ran "cold" for awhile.
I had to do a bit of house-cleaning in my personal life as well. A person's eyes are the windows into their soul. I needed to be able to look someone in the eyes, and just know that they were good for me, right for me, would never bring any harm to me, and that I could trust them with my life. I needed to feel this level of trust towards anyone who was going to be in my life going forward because PTS made me feel like my life was endangered constantly, even if it was all in my head. Most fell into a large middle group of people who I knew cared and were concerned, but just didn't know quite what to do with me or how to support me. I tried my best to distance myself from such people. These were all good people, but good wasn't enough. I needed nothing less than the very best for me, someone that could stand by my side with confidence, and who just knew exactly how to support me.
There were, unfortunately, a person or two in my life who when I peered into their souls, I saw ulterior motives and hidden agendas. These people were gone from my life in an instant, without so much as a second thought, and were made very aware that they were no longer a welcomed presence in my life. I had sensed trouble within these people, and bridges were burned to prevent any more of this trouble from finding its way into my life. These were survival mode instincts. Get out, and stay the hell out. Right or wrong, fair or not, simply having caused me to doubt their intentions towards me was enough to fail me as a friend. These were not the types of people that I could have anywhere near me during this time. I was terribly hurt and wanted nothing more to do with these people, and banished them from my life.
Cancer changed so much about me as a person, but PTS and having "demons inside" changed me even more. It raised my bar for friendships through the roof, and a lot of people simply didn't make the cut, through no faults of their own in the majority of cases. The only people I could have anywhere close to me needed to be rock solid, dependable, trustworthy, and positive people. I could count on one hand the number of people that I felt this way towards. Cancer is already such a lonely experience, but experiencing PTS is even moreso. I withdrew from people I had loved and considered friends, I withdrew from interests and hobbies, and I withdrew from everything and anybody in my life because at the time, I didn't know exactly what was hurting me and why. I pulled the plug on everything.
I know there are some people that I've pushed away that have been very hurt, and I'm sorry for this. How the hell do you explain to someone that your house is on fire in your mind, and that whatever their deal or issue was, they just needed to get the hell away? This is how survival mode instincts work. You're fighting to survive, and nothing else matters. My conscious mind was no longer working, and all I was operating on were survival mode gut instincts. If I didn't feel at that instinctual level that someone was good and right for me, you were potentially registering as a threat, and simply couldn't be anywhere near me. And sometimes, this meant being alone.
YOU DON'T FIGHT A FIRE BY YOURSELF
As many people as I had suddenly pushed away, I knew full well that I needed help, but from whom? You don't fight a fire by yourself! You need the help of as many people as possible, from people that you know without a doubt are on your side. A critical mistake I had made during my first few years after cancer was actually trying to take the advice of many well-meaning people, including some of my doctors, to just try and "forget" all that I had been through and move on with my life. Maybe this works for some, but for me it was terrible advice. Scorpios never forgive or forget anything, and especially not something that had hurt us.
Cancer Community Support is Essential Long After Cancer: I had become disconnected from the support I had enjoyed from fellow testicular cancer fighters and caregivers at the TC-Cancer.com forum, which was one of the first places I found on the Internet back in 2011 when I was at the start of my cancer fight. Many of these people had drifted away from the forum, but I quickly tracked them down and connected with as many as I could find on social media. We were scattered all about, but just having them psychologically closer like this helped me to feel better, and safer. I logged back into the forum for the first time in awhile and made a post about the terrible anxiety I was struggling with. I had thought I was all alone, but one by one the responses popped up from others who had been on my same timeline, and who had been facing similar challenges in their own lives. Just knowing that I wasn't alone and wasn't nearly as isolated as I thought I had been made an immediate and huge difference. There's nothing worse for any cancer fighter or survivor than to feel alone!
One of the very best things about the cancer community is that we're always there for each other. When other friends fail you or just don't know how to support you, the cancer community just knows, and always has your back. Cancer community support can be a bit of a double-edged sword. There are plenty of sad stories, and not everyone you know is going to make it, but the support gained from this community of incredible people is simply invaluable and irreplaceable.
Support from the Medical Community: I called my oncologist's office in January 2013 to get a fresh prescription for some Ativan, because my anxiety was out of control. I was immediately relieved when I heard the voice of Trish Traylor on the phone, the best and most incredible oncology nurse ever. What kind of oncology nurse can you chat with about cancer, life, fast cars, and guns? I hadn't talked to Trish in quite some time at this point, but just hearing her voice on the other end of the line helped to put me at ease and bring some calm back into my life. Trish and I talked on the phone for a bit, and when I told her what was going on she dropped me the numbers to some therapists. I gave them a call later, only to find out that the first available appointments weren't for another 6-8 weeks for one, and 2-3 months for the other. I couldn't believe it and knew it wasn't going to do. I'm sure there were other resources in the area that could have helped on a more timely basis, but my house was on fire now, and I needed help now.
If I waited 6 to 8 weeks to get into a therapists office while experiencing PTS, there wasn't going to be anything left of me for therapy.
My local medical system had failed me here, and I knew I was on my own. I was very grateful that Trish was willing to exchange personal contact information with me, because I knew she didn't have to. Trish was a "safe" person, and I needed more people like this in my life. I would have many pep talks with Trish over the coming months, on her own personal time. Trish became a huge source of encouragement and guidance for me, and I was so grateful for her presence in my life. If you ever want to know a real-life angel, get to know an oncology nurse!
Finding Your Innermost Circle: I also sat down for pep talks with my friend from work, Claudia Ritchey, quite often during this time. Claudia and I had bonded over the years and she just got me, and knew what I was going through not because she had been there herself, but simply because she was that brilliant and amazing of a woman. Claudia was a very spiritually connected person, and all it took was 5 minutes of talking to her and I would calm right down, and I just felt like everything was going to be okay. Claudia knew. I didn't know how she knew things, but she did, and I believed her. Claudia and I connected on a very deep and spiritual level, and she had always been a complete angel to me, except that she was leaving! Her last day at my office was the last Friday in that January of 2013, and I was going to have to find a way forward without nearly as much of her physical presence in her life.
Claudia had become like a big sister or sister-mom to me, with all of her southern gal warmth and charm to go with it. God bless her for being on-call for me throughout most of 2013. I knew she was far too talented and gifted to be sitting around as our office manager. She had sacrificed a very high profile legal career at the Supreme Court of the United States for her family, and clearly had callings elsewhere in life. God had other plans for her, and needed her to bless other people with her presence in their lives, and I tried my best to accept that she would be gone.
I leaned heavily on my cancer mentor, Kim. Kim is a friend that my wife and I had known for over 15 years by this time, who had been diagnosed with thyroid cancer the year before I was diagnosed with testicular cancer. I didn't know what a cancer mentor was or why one might be needed, but without even asking I already had one. Kim volunteered herself for this role when she learned of my diagnosis, and it never mattered one bit that we had different types of cancers, nor that she was a she. We're all the same inside, and feel the same things, and so much of the young adult cancer experience transcends cancer type and gender. Kim got me. Kim knew exactly what I was feeling, and just knowing that I wasn't alone made things better, but Kim was in Pittsburgh. I quickly saw the pattern.
People that were wrong for me had been too close, and those that were right were too far away.
I found some important support that I needed and which helped to shore me up, yet still felt alone and abandoned at the same time. I didn't know what the answers were, and still had terrible amounts of anxious energy inside of me. All I knew was that I needed to find outlets for this, something, anything, or else it would eat me alive. What was done with some others in my life was done, and what needed to be done. No regrets. If something or someone was wrong for me, they just needed to go. I had closed various doors and slammed shut a few others, and there was no going back. As frightened as I was, it was much better to be alone for awhile than to allow hurtful people to continue to be a presence in my life. I simply prayed that the right doors would open in time, and tried to find the outlets that I needed to manage on my own.
FIND HEALTHY AND PRODUCTIVE OUTLETS
When I was diagnosed with cancer, there was little time to be stressed, or sit around and worry. I had chemotherapy sessions, surgeries to prep for, consultations, and tons of other appointments with this doctor or that doctor while struggling to keep my body afloat through treatments. Now, I was just waiting around and going crazy. I needed outlets, and I needed them now, or else I was just going to burn up inside. I couldn't even sit still long enough to go out to lunch, it was that bad! I felt threatened constantly, and like a sitting duck if I was waiting around in some restaurant. I had to keep busy, and I had to keep moving.
RUNNING. I had just started running at the tail end of 2012, which as it turned out, happened to be the origin of all of the strange pains I had been having when I was suddenly exercising muscles that hadn’t gotten much if any use in quite some time. Running would prove to have many benefits for me, such as helping control terrible nerve pain issues I was having, and keeping my hormonal levels cranked up. Most importantly, there was something very primal about running, specifically outside with the wind on my face, and trees and scenery passing me by. It gave all this energy inside of me a place to go, and fulfilled a sub-conscious desire to literally just run away from everything that I had been experiencing. No matter how anxious I had been that day, running would always help to bring back some calm without fail, and I needed that.
While dedicating an hour of time to go running or walking, it was also an hour of OFF time just for me where I could shut out the rest of the world and focus within. Running over lunch became my private "FU Cancer" time. I never listened to music when I went running, but rather got myself into semi-meditative states where I could playback a particular moment, or re-experience something awful that I had felt in a more controlled and safe environment. I could either process it, or just allow myself to feel something for the first time while in my "safe zone." I told myself that as long as I kept running, that cancer couldn't catch me. I knew this wasn't how things worked, but cancer plays the most terrible head games with you, and you have to play head games back! I knew it wasn't true, but it felt good to say it!
Taking up running is one of the best things I ever did for myself after cancer. It’s an entire chapter of my life, going from hardly being able to get up a single flight of stairs without wheezing after cancer, to being able to run 5K's in well under 30 minutes.
RANGE THERAPY. A little shooting range therapy went a long ways too. I just couldn’t get this terrible flashback sequence of all of the worst moments of my 5 month cancer fight out of my head. It replayed itself over and over and over again, traumatizing me every time. It was so bad one day that I just had to leave work. I went to the NRA Headquarters shooting range in Fairfax, VA and put up a bunch of paper testicular carcinoma targets that a friend from NIH had hooked me up with. With the terrible imagery of these cancer fight flashbacks playing through my head and tears streaming down my face, I rapidly unloaded magazine after magazine into these cancer targets. I fucking hated cancer with all that I had at this point, and with every fiber of my being. I took great pleasure in ripping these stupid cancer cell prints to shreds. Cancer had caused my body to betray me, had taken my life hostage, and now even after cancer it was still finding ways to fuck with my mind. From then on, whenever this terrible cancer fight flashback sequence would start playing through my mind, I would immediately roll the new clip of shredding paper cancer targets with a 9mm pistol in its place, and I was never tormented by this flashback sequence again.
VIDEO GAMES. Yes, I even turned to video games as a form of therapy! I laughed out loud when I saw an article in 2015 talking about the potential benefits of video games for cancer survivors and those experiencing post-traumatic stress, because I knew how true it was. I would wake up in the middle of the night either naturally or due to a nightmare, and then my mind would just start racing with cancer-related thoughts and worries, and wouldn't stop. I had terrible insomnia, but there was no way I was going to sit around and worry about cancer all night long, so I would fire up my PS3 and play Gran Turismo 5 in the middle of the night, and race myself to oblivion. It forced my mind to focus externally, and any sort of video game that requires intense external concentration will do that! In the article they had mentioned Tetris, but a good racing game would keep my petrolhead mind just as occupied. It would stop the cancer thoughts from flowing, and I would go until I was so damned tired that I could drag myself back up to bed, and immediately crash and fall back to sleep. Taking drugs like Lunesta would help reduce the cancer insomnia, but just made my day miserable by making my peripheral neuropathy and muscle fatigue issues so much worse. Video games were an ingenious distraction for these middle of the night mind games. My mind was already racing about cancer, why not give it something else to race?
WRITING. I had been inspired by an article or two that Kim had been writing for the hypo-parathyroid association magazine that she had joined in the aftermath of her thyroid cancer. It just seemed like such a good way to vent, as I proofread a piece she had prepared in which she was venting her frustrations with her own young adult cancer experience. I knew I always had a knack for writing, and that it was an untapped talent that would never get any real use in engineering world in which I worked. Cancer sure as hell had given me plenty of material to write about, and so I started journaling my thoughts almost every single day.
Whatever terrible thoughts I was having, I dumped them into my journal in hopefully semi-coherent thoughts. There were a lot of terrible thoughts, and my journal quickly reached tens of thousands of words. It was through this private writing to myself that I started to get in touch with my true spiritual-self for the first time, and I began to understand who exactly I was, what my needs as a person really were, and all that was lurking inside of me. I took it all raw and head-on, numbed only by a bit of wine. I was never on an anti-depressant of any sort, and didn't want to be. I wanted to know exactly what was lurking inside of me so that I could learn how to grasp it, and then beat the shit out of it.
FEEL WHAT YOU NEED TO FEEL, AND JUST LET IT OUT
On a run in early 2013, a huge and paralyzing wave of anxiety suddenly swept over me to the point that I had to stop mid-run. I sat down on the curb right where I had stopped because I couldn't even make it to a park bench that was a short distance away, and just started sobbing uncontrollably. I was completely paralyzed by fear, and it still boggles my mind to this day what I was even afraid of. I was afraid of having to get the dreaded retroperitoneal lymph-node dissection (RPLND) surgery done, except that this was January 2013, and I had already had this surgery done 18 months ago in June of 2011!!! I completed chemotherapy in May of 2011, and was so disappointed that my post-chemo CT scans showed that I hadn't gotten a complete radiological response from the chemotherapy alone, as we all had hoped. There was still a lymph node or two showing on those post-chemo scans that were greater than 1cm, which met the standard of care for recommending this terrible RPLND surgery. Because my tumor markers had always been negative, it was purely a guessing game as to what exactly was still in these lymph nodes. It could have still been active cancer, and I was so terrified and disappointed by this, but at the time I didn't blink an eye. "Well, guess I'm getting cut," I responded to my wife on a text message.
I carried my warrior mentality with me straight from three months of chemotherapy hell, and right through the RPLND surgery that I had on June 22nd, 2011. I wasn't afraid of the surgery back then. When you're fighting for your life, a different mentality takes hold, and you just do whatever you need to do. My desire to fight and my desire to beat this stupid cancer and live far exceeded my fears. I never felt even an ounce of fear at the time, but it doesn't mean that I was never afraid. People have called me brave and heroic, but I've never felt that way about myself. We suppress our fears in order to get through extremely challenging life situations, whether we're fighting cancer or a war. I didn't know it, but I was absolutely horrified inside beneath this warrior spirit, and sitting on the curb on that freezing cold day January day, there all of those emotions finally came pouring out.
I didn't understand what was happening in the days that followed this particular episode, but through writing in my journal I came to realize the above, that I had simply been in a warrior mindset throughout my cancer fight, and that I had so many more emotions like these locked away inside that I just needed to release. I came to understand that I was hurting as I had been because I had never allowed myself to feel or express such powerful emotions, and that they were better out than in. After I sat on that curb for 10 or 20 minutes just letting all of that out, I was never afraid of that wretched RPLND surgery again, nor did memories from it haunt me as they had been.
I officially called bullshit on the notion that men aren’t supposed to cry or feel anything.
I no longer told myself that there was something wrong with me for feeling what I was. For the first time, I just allowed myself to feel whatever I needed to feel without judgement. I cried more in the first half of 2013 than I ever had in all the rest of my life combined. Every time I cried, I released a little bit more pain from the dark corners of my mind, and felt better after I did. All of the frustrations, all of the fears, all of the disappointments about life when your own body betrays you in such a terrible way, I just let them all fly out of my body through tears. I journaled them all, with a bottle of wine in front of me at 2am, and a heaping pile of paper towels overflowing the trash can I parked next to the couch. Mere tissues weren’t nearly enough to absorb this big boy’s tears.
LIVE LIKE YOU WERE DYING
In this first half of 2013, two years after my cancer diagnosis and six months away from hitting the all important two years cancer free point, I just had this innate fear that it was inevitable that my cancer was going to come back. I couldn’t shake it no matter what I did. I had six months of active surveillance to go, and just felt like something was going to happen The closer I got to this two year finish line, the worse my anxiety became. I felt like if something was going to happen, it was going to happen sooner rather than later, and that my "last good day" could be any day now. Even when my PTS issues were switched off, I just couldn't shake this feeling. I was genuinely afraid that this was my time, and wanted to live the best possible last six months of my healthy life that I could. No rational or logical thought mattered. The high five year survival rates for testicular cancer were comforting at the conscious level, but we're always afraid that we're going to be one of those few percent that have something happened. When you’re spooked, you’re spooked.
FUN WITH FRIENDS. In February of 2013, I had tickets to go to the Wizards-Rockets game with some friends that had been planned a few months in advance. Bad thoughts were finding me that day and I almost didn’t go, but I refused to allow cancer and post-traumatic stress issues rule me. I forced myself to go, and it was a wonderful few hours spent with a long-time friend talking trash, seeing who could get the best photos of the cheerleaders, and maybe watching a little bit of the game. It was a few hours where my mind was solidly engaged on things external to the turmoil of my inner world. I enjoyed this time away from my own mind immensely. I don't think my pal Richard realizes just how important of a moment getting out for this game was for me, but he will now. It was the first time I said, "Fuck you cancer and post-traumatic stress, you're NOT going to stop me from living and enjoying my life." It was a huge moment that set me off on the right foot not just for the year, but for my entire life after cancer.
THE GREAT OUTDOORS. I had always wanted to give hiking a try, but never found the time in my 35 years. My long time friend Amit took me on a hike around Sugarloaf Mountain in Maryland that spring. I loved it and took to it immediately, and enjoyed the fresh air and the scenery immensely. Taking all of this in while concentrating on the hike, and enjoying the company of another long-time friend meant another few hours where my mind was solidly focused externally, and away from the complete turmoil of my inner world. Amit and I followed this hike up with the 8-mile Catoctin Mountain loop, which was another few hours of solid external engagement for my mind, fresh air, great scenery, great company, and exercise as well. I'd loved to have gone hiking every single day if I could.
THE COMFORT AND JOY OF MY FAMILY. My wife and I went on our first private post-cancer getaway sans kids to St. Lucia in October of 2012 to celebrate our anniversary, and then went as a family to Disneyland over Thanksgiving. These were the most wonderful times of our lives, and I needed more of them. I needed to double down! We went to DisneyWorld in Orlando over spring break of 2013 where we were blessed with a week of absolutely perfect weather, and it was such a fun and wonderful time. Funny how it can be so easy to take family trips like these for granted. I loved and enjoyed every single second, feeling inside like this could be the last Disney trip I'd ever go on with my family.
We immediately hit the beach over Memorial Day weekend to our favorite beach, Rehoboth Beach in Delaware, and enjoyed a blissful beach weekend. Over the summer we finally went on the midwestern road trip that we had planned for 2011, but that my cancer fight spoiled the plans for. We spent a few days in Chicago, and finally paid a visit to Wisconsin Dells for the very first time. My wife and I had criss-crossed the Dells nearly every weekend for two years when she was in Rochester, Minnesota, and I was in Libertyville, Illinois. We had always wanted to meet halfway there one weekend, but we were young and had little money, and just didn’t want to spend it like that. We went to the Great Wolf Lodge waterpark and had an incredible few days, and became waterpark addicts. Our kids had so much fun that they didn’t want to leave even after a few days, but we continued on our way to Rochester, MN for my wife to meet up with some old friends, and then finally landed in Minneapolis for the Minnesota State Fair. It was a fantastic road trip, there was never a dull moment, and despite having travelled nearly a thousand miles by car, our kids were little angels the whole way and hardly complained.
My family was my heaven on earth, and I never wanted to leave them or be apart from them.
Living like you were dying wasn’t just about going on big trips, though. Hiking was free, and going to a basketball game with friends was minimal cost as well. Every weekend we had things going on such as trips to museums, trips to the zoo, and other places of interest. Every minute my mind spent planning for, anticipating, or being engaged with an enjoyable activity, was a minute it wasn’t spending in a state of complete distress worrying about things I had no control over. It didn’t mean that I wasn’t still afraid because I was, and it didn’t mean that I didn’t still have terrifying thoughts because I did. Staying solidly engaged with living and enjoying life as much as possible had the effect of slowing down the awful thoughts I was having to a trickle. At that rate I could process them one by one, as opposed to being flooded with them to the point of drowning in them as I had before.
IT TAKES AN ENTIRE VILLAGE TO KEEP CANCER SURVIVORS FEELING WHOLE
As wonderful as my wife, family, and friends were, I still needed more. Amit and his wife had just had their first baby and were busy with that, and my friend Richard and I were just on slightly different life rhythms, with kids just different enough in age that it made it difficult to connect. I was still too afraid to be alone, my wife commonly had to work on weekends and couldn’t literally be by my side at every moment, and too many of my other friends were scattered about the country.
If ever there was a time that I really needed a brother or a sister, someone dedicated to me and that knew me, and that I would feel totally and completely safe and comfortable around, this was the time. I needed someone that could fly in for a weekend if needed just to keep me company, because I was still hurting this badly inside, and couldn't be left alone. I actually do have a sister that most people don’t even realize that I have, but for whatever reason she’s just chosen not to be a part of my or my family’s lives, and I haven’t had any sort of relationship with her in over 20 years now. At best, my sister has just never really cared that I’ve existed, or at worst she's resented me. Not once have I ever felt like my sister has actually cared about me, all throughout my cancer fight I hardly even got a text message or an email from her, and as far as I know she never read even a single one of my CaringBridge online journal updates. For 20 years it didn’t really matter, but now, going through this, I really needed a brother or a sister in my life. Knowing that I had one but didn’t really have one just hurt, and it made the feelings of isolation and abandonment that I was already experiencing so much worse.
This was a herding instinct coming to the surface, and the feeling of safety in numbers. I had always been a very independent person, but suddenly became a people person out of nowhere. I needed my 'herd' to surround me and protect me, but who was my herd? There were definitely people that I felt close to, but weren't nearly physically close enough. I needed someone right down the street that I could feel this way about. I needed a miracle.
THE MIRACLE OF THE RIGHT PEOPLE, AND THE RIGHT SOULS IN YOUR LIFE, EXACTLY WHEN YOU NEED THEM
On Saturday, February 9th, 2013 what I consider to be a miracle happened. My son William had a birthday party to go to for one of his daycare classmates, Josie Way. This was the very first week that I had managed to get my PTS turned “off” in the early days, although that does have to be used in quotations. PTS is like a trick light switch that wants to keep flipping itself back on. You can flip it off, only to have it flip itself back on again. I was still feeling so raw and vulnerable, and bad thoughts had been finding me again that morning. I didn't want to go. I was afraid, but it was all up to me. Due to a scheduling conflict with something that my wife and daughter needed to go to at the same time, if I didn’t take Will to his classmate's birthday party, he wasn’t going to get to go. I wasn’t ready to be around people yet, but I refused to give in, I refused to allow cancer to rule me like this, and I forced myself to go.
The party went almost exactly as I thought it would. I was struggling to hold back bad thoughts, I had tears welling up in my eyes, and I was still so spooked. I almost thought I was going to have to leave the room, but my attention started focusing on the hosts of the party, Natalie and Mark Way. They just seemed like a carbon copy of my wife and I, a very pretty and petite western appearing Asian woman, and a tall and goofy looking white guy. I had seen their daughter in Will’s class for at least a year and a half, but never remembered meeting them. I wondered how on earth I hadn’t until now, despite having been to dozens upon dozens of school birthday parties in the past.
It turns out that I have a very good sense for people, and if someone is supposed to be a part of my life or not. I knew within a week of meeting my wife that she was the one for me, and I've also sensed people that would be trouble well in advance as well. I took one look at Natalie and Mark, and whatever this sense that I have is, pegged the needle positively in a way that it rarely if ever has in my life. I had this huge sense that these were people that I was supposed to know, but was afraid to initiate a friendship. I had been hurt by others and couldn't afford to be hurt again, and I knew they’d quickly learn of my cancer story and issues with PTS. I was so afraid of being rejected, but listened to what my instincts were telling me, and took a huge leap of faith to initiate a new friendship the week after the birthday party.
It didn’t take too long to realize that our new friends did practically all of the same things that we did! Seeing social media updates, our first few comments towards each other were along the lines of "hey, we just did that yesterday," or "we were just there last week!" Natalie and I got to talking a bit more, wondering how we had missed each other all these years, only to realize that we were just missing each other by not even 5 minutes most days in the afternoon for pickup, and that we actually lived in the same neighborhood right down the street from each other! And when they started seeing my cancer related updates on the struggles I was facing in life, they didn't run away from me as I feared they would, but actually ran towards me and were immediately supportive in a very positive way. My mind was blown.
We had our first family playdate together a month or so later, after our schedules finally cleared. We met at a local park early in the spring of 2013 and then went to dinner together, and from there the most wonderful of friendships was born. Museum trips, hiking adventures, countless dinners, foodie adventures, park playdates, weekend trips, Game of Thrones, and even a co-coordinated vacation or two, and the list goes on and on. Whenever Debbie was tied up with work on a weekend, I could always sync up with these new friends of mine just a 5 minute walk down the street, and Debbie knew that I would be in good hands.
One of the first things anybody will notice about Natalie is that she just radiates positive energy, and that she has a laugh that can fill a room. She’s also the most wonderful of hosts, and never leaves anyone in her presence unattended for even a moment. If she’s engaged with several people and someone steps away, you might suddenly find all of this positive energy that she has beaming solely onto you, which has actually caught me off guard on an occasion or two! But most importantly for me, Natalie is a very present person. Maybe we were getting just a bit of special attention, but you’ll rarely if ever catch her fiddling with her phone in the presence of others, and her mind never drifts months ahead or back to months ago. She’s just present and accounted for at all times with whomever she happens to be engaged with, and that's exactly what I needed in a friend and companion. As Natalie was fully present with me, it forced me to stay fully present as well. This kept my mind from drifting to the dark and rotten places it would go on it own, and having such similar lives and so many common interests made this unthinkably easy and natural!
As for Natalie’s husband Mark, all I can say is that the man is a riot. He's one of those people without a filter that takes a certain type of person, with a certain sense of humor to be able to appreciate, and I was one of those people. On more than one occasion, my mind had been slipping back into the negative, only for Mark to say something completely off the wall funny, or he would send a funny text message that was so “out there," that it would snap me right back into the present. It would focus my mind on something far more engaging, like coming up with a witty reply or comeback! Natalie and Mark were a magical one-two combo that could keep the terrible darkness within me fully in check. It’s not that my other friends weren’t good enough. I was just in that bad of shape, had little to no control over my internal thoughts and emotions, and needed a level of friendship and companionship that was above and beyond anything else.
I'm so blessed to have found this level of friendship that I was so badly in need of with Natalie and Mark, at exactly the time I needed it the most. It quickly became the sort of friendship where you feel like you've known each other for your entire lives, despite only having known each other for a short time. The icing on the cake was that Natalie actually has a twin sister, Norma, who has the same energy and is just as amazing as she is. Natalie is everything I ever dreamed a sister ought to be, and now it was like getting a bonus sister for free! I very quickly fell in love with these two totally awesome Libra twins and their families, and they became beloved second families to me.
A Huge Milestone
A year later on Martin Luther King Jr Day in 2014, our kids all had the day off from school and we had all planned to take the day off, except for Debbie who forgot! I went with the Ways to the National Air & Space Museum in Dulles, VA and spent a few hours there, and then we got lunch together on the way back. We had only planned to spend half a day together, but it was such a nice and unseasonably warm pre-spring day that we ended up hanging out at the neighborhood park during the afternoon too, and then we all got dinner together after Debbie finished up at work. This might seem like a fairly ordinary thing to do to many, but for me something hugely significant occurred on this day. It was the very first time in the three years since my cancer diagnosis that I had managed to go an entire day without even a single thought about cancer, without my wife being by my side for the whole day. It was then that I realized just what a huge blessing these friends of mine had been. Time and time again throughout this cancer journey of mine, it's been the power of the right people, and the right souls in my life at the right time, that have ended up making the biggest differences for me.
I’d wondered for the longest time over the years why we hadn’t ever met even in the grocery store right in our neighborhood in the previous six years, and the answer is because the time wasn’t right. I had contemplated suicide just weeks before we finally met, and needed the maximum benefit of the powerful new friendships that these two would provide to kick in exactly when I needed it the most. If their daughter's birthday party had been even a week prior, I simply wouldn’t have been able to go as I was in that bad of shape, and in no condition for any public appearance at all. I had zero control whatsoever over my emotions, and could be a wreck and in tears at any moment. And had I not flat out forced myself to take Will to his classmate’s birthday party even though I wasn’t feeling up for it, I’d have missed out on what has been the best and greatest friendships I’ve ever known thus far in life. Life is amazing. God winks.
Giving Thanks
Recovering from PTS after Cancer was an all-hands, all of the above effort. It took everything that I had, and everything that everybody else in my life had to help pull me out of it. It took every bit of love that my wife had for me just to keep me afloat. It took a deep commitment to self-care and self-healing, and finding healthy and productive outlets for such terrible energy I had inside. It also took great sacrifice, as my priorities and my focus in life had to change completely in order to handle this. There were people that just couldn’t be in my life anymore and that I had to say goodbye to, and others that I simply didn't have the time for anymore while having to put almost every bit of spare time and energy that I had into self-care and recovering, as I slowly nurtured my way back to good mental and physical health. I'm sorry to those that I had to leave behind. It doesn't mean that they weren't good people, they just weren't 'good for me' through this phase of my life and cancer survivorship. There were only a precious few seats for passengers on this ride, and I had to make sure that every single one of them was filled with the very best people for me. Nothing less would do, because I knew it was going to take everything to pull me out of this crisis.
As for these most dear and beloved friends of mine that were able to be by my side during this crucial time in my life, none have had the physical experience or memories of helping to rescue me from my burning house. They also won't have any memories of helping me to put the flames out and then rebuilding, yet this is exactly what these friends of mine have managed to accomplish, just by being themselves. I know what I feel inside towards these friends of mine, and there is no greater love, no greater friendship, and no greater appreciation. There are simply no stronger feelings that one can feel. I don't know how to express in words exactly how strongly I feel, but it's a very deep and soulful love and appreciation that I know transcends the limits of our physical world. I'm indebted and adoring, and will love these friends of mine forever.
To my wife Debbie, my soulmate, and to my two totally awesome kids Katie and William, that never cease to put smiles on my face. To Claudia and Trish, to Amit and Richard, to Kim and Kelly, and to Natalie, Mark, and Norma. Thank you all, from the bottom of my heart, for being the right people, and the right souls in my life, at exactly the time that I needed you. Some of you I had only just met or known for a very short time. When others had failed me or just weren't what I needed, here you were, and not only did you help to rescue me from something terrible, but you helped me to find my footing, show me the way, and rebuild my life into something truly wonderful. I consider you all to be blessings, but the gifts of your love and friendships through such a crisis is not something that I can ever hope to repay. It's a blessing that can only be paid forward to others, to the next Steve Pake who needs it. This is all for you, in the hopes that it will inspire others to be that blessing to those struggling in their own lives, and to help those struggling find their way as you've helped me to find mine. Thank you for allowing me to share our stories together. Your support of me through such a terrible ordeal and period of my life will never be forgotten ever, and my love for you all shall be eternal.
Continue to PTSD After Cancer Part III - Managing Life After
StevePake.com
PTSD After Cancer Part I - What It Feels Like
I thought I had been doing so well after cancer. I had a new job and was back to life and living, but little did I know just how wounded I was inside. The stress of cancer survivorship started getting the better of me. A cancer warrior friend had died, and other friends of mine were experiencing recurrences. I had strange pains in my body, and thought for sure that my cancer was back, and that I was next. I had done so well for so long, but was so spooked and simply fell to pieces just short of two years after my cancer diagnosis.
This is the first of a three-part series of essays about posttraumatic stress after cancer, what it felt like to experience, coping and overcoming, and all that I've done to manage life after. For a top level overview of these essays, please visit my PTSD After Cancer landing page.
PTSD Part 1 - What It Feels Like
Forget about how afraid you were the first time you heard the words “you have cancer.” When you’re first diagnosed with cancer, at least you have a very long to-do list of tests and scans and various doctor’s appointments to keep you occupied. The worst thing about post-traumatic stress after cancer is that you can have all of those same terrible fears, yet you have no idea what in the hell you’re supposed to do with yourself. You have no doctor’s appointments to go to, and no treatments to receive, but you’re left with all of this terrible freewheeling energy that just burns you up inside.
The best way to illustrate what post-traumatic stress (PTS) can feel like is with an example. Somewhere out there on the Internet, there’s a list of movies that have been compiled where the characters have suffered from PTS. I’m not particularly big on Hollywood movies, but I’d seen some of these movies, and while the characters themselves may have suffered from PTS, there was little to no depiction of that in the movies themselves. The best movie example I’ve ever seen of PTS is 1982’s Firefox, starring Clint Eastwood. Eastwood’s character, Major Mitchell Gant, is a Vietnam veteran who suffers from PTS episodes throughout the movie, and which becomes a critical part of the plot line when you’re left wondering if he’ll be able to make it through key points in the movie while in the midst of PTS breakdowns. Throughout the movie, viewers are given a visual depiction of what’s going through his mind through each episode. Ejecting out of his fighter over the jungle in Vietnam, being tortured and abused as a POW by his captors, and a rescue scene where almost everyone is killed with a gatling gun blazing from a friendly Sea Stallion helicopter. An innocent young girl that had just given him a sympathetic smile moments before, is vaporized in the next by a napalm bomb as she tried to flee.
The opening scene of Paramount's 1982 spy-thriller Firefox, and one of many depictions of PTSD throughout the movie.
I remember watching this movie as a kid, and wondering why he didn’t just stop thinking about such things if they were so painful for him. Never in my life did I expect to know the answer, because you can’t.
PTS episodes aren’t part of our conscious thought process, but rather sub-conscious and instinctual. You have no conscious control. A sight, a sound, a smell, or something or someone can remind us of a traumatic event in our lives, and it triggers our defensive instincts. We’re suddenly on high alert, and have so much adrenaline running through us. In the opening scene of the Firefox movie, all of those classic defensive instincts are on display, and set the tone for the whole movie. The Air Force flies out to see Major Gant about an important mission that they think he alone is capable of. They fly out in a CH-53 Sea Stallion helicopter, of the same type that he had a traumatic memory of in Vietnam. All it takes is the distinctive sound of that specific type of helicopter approaching before he can even see it, to instantly trigger his defensive instincts. He had been out for a jog, but goes into a full run, as if running for his life back to his cabin, and then hides and prepares himself to fight with his shotgun. The painful memories and flashbacks take hold, and he’s right back in Vietnam again reliving his terrible war experiences. Being mainly a visual medium, movies have to convey an experience visually, but a PTS episode isn’t necessarily a visual experience. They can simply be overwhelming and unexplained feelings of dread or danger, with no such visual sequence to clue you off as to what you're actually spooked about. The eerie musical effects in the Firefox movie help to convey the emotional feel of a PTS episode.
What Triggered My PTSD
When I was first diagnosed with cancer back in February of 2011, I was already facing the rejection of a job loss at the end of 2010, victim of another mass layoff in the tech sector, and then suddenly being isolated from people that I had considered friends for the past few years. All of the strange pains in my right testicle started a month or two after, followed by my cancer diagnosis. It was a terrible situation to be in, having both lost a job and then being diagnosed with cancer, and I felt like I was being kicked while I was down. These were the external events that were encompassing my mind around the time of my cancer diagnosis. Strange pains, job worries, sudden isolation from friends, all of which lead to cancer.
At the end of 2012, things were so similar. I suddenly had strange pains all over my body again, eerily similar to the pains I had experienced when I was first diagnosed with cancer. When you're a cancer survivor and you have strange pains in your body, all you can think is that your cancer is back, and that you're going to be sucked backed into the hell of fighting cancer again. Strike one. I had found another job while fighting cancer that I had been working at for over a year, but a major project I had been working on was suddenly canceled, and I couldn’t help but have job worries again. Strike two. Elsewhere in life, I had a terrible falling out with a friend, and no longer felt the least bit comfortable leaning on an entire circle of friends for support when I needed it the most. Strike three. Everything I had felt and experienced around the time of my cancer diagnosis, I was suddenly feeling again. Strange pains, job worries, sudden isolation from friends. It was all so eerie, and I was getting so spooked, and then things just got worse.
A cancer warrior friend of mine had just died, and then there was the terrible Sandy Hook shooting in which so many innocent children were killed. A pistol cartridge was then found on the grounds of my own children's school, and I couldn't help but think that they were next. I had just taken professional photos of a ceremony at Arlington National Cemetery for a high school friend's father that had passed away earlier in the year. To this day, these are some of the most powerful and moving photos I've ever taken as a photographer, but now I had fresh images of death and a family mourning the loss of a loved one floating around in my head. Strikes four, five, and six!
There were so many bad omens both in my life and elsewhere in the world. It was so bad, and I started coming off the tracks. I could have handled one or even multiple examples of these awful external stimuli and stayed afloat, but to be hit from all sides at once was simply devastating and traumatic. I felt threatened and surrounded by death and destruction on all sides, and like my whole world was crumbling again. The pains in my body weren't going away and were only getting worse. I was terrified, and so distressed about life that I had been crying myself to sleep each night. I feared that I had just lived my last good days, and that this was it. I was all but certain that my cancer was back, and wondered what the hell I was going to tell my family as my next surveillance appointment loomed, just days before Christmas in 2012.
My innocence about fighting cancer was gone. I knew just what a brutal and miserable life experience fighting cancer was. I knew how bad a recurrence could be, and that I might not emerge out the other end. I was nearly two years out from my diagnosis, and my body still hadn’t come even close to recovering fully. I constantly felt so weak, and feared that my body would just immediately collapse under the strain of more chemotherapy or radiation, or whatever it was that I was going to need. I worried that it wasn't cancer that would kill me, but the harsh treatments needed to fight it that would. I hated my body, I hated feeling so weak, and I hated how it made me so afraid. I just wanted to run away, but you can't run away from your own body. I was terrified just of living in my own skin.
Alas, my appointments came and went, and everything was clear. I told my doctors what had been going on, and out of due diligence a few extra tests were even run for good measure. Blood tests, chest x-ray, and even a scrotal ultrasound was done, all of which were fine. It was nothing. My body was perfectly normal, and even the strange pains I had been feeling went away a day or so after these tests. It was all in my head.
Deep inside I was relieved, but I was absolutely traumatized by everything, all over again. From the start of my treatments until I was nearly two years from diagnosis, I hardly batted an eye. I kept a brave face on, and was just a warrior through months of chemotherapy and brutal surgeries for the sake of my family, and now it was all coming out. All was fine with my body physically, but mentally and emotionally the floodgates had opened. Every fear I hadn’t felt, and every worry I hadn’t expressed in the preceding two years just started pouring out, and I didn’t know what the hell I was supposed to do with myself. These are the terrible mind games that cancer plays with you. My body was fine, but I had just died spiritually inside.
The Clinical Symptoms for Post Traumatic Stress Disorder
Symptoms for PTS are grouped into three categories. First there are re-experiencing symptoms such as flashbacks, bad dreams, or frightening thoughts. There are also avoidance symptoms such as wanting to stay away from places or things that might remind you of your experience, along with feeling emotionally numb, or depression, and losing interest in activities that were enjoyable in the past. The last category of symptoms for PTS are hyperarousal symptoms such as being easily startled, feeling tense or on edge, or having difficulty sleeping. If symptoms persist for more than a few weeks, it might be PTSD.
Yes. Everything. All of the above. I lit up the full list of symptoms like a Christmas tree, every single one of them, almost every single day for the better part of 6 weeks, and off and on throughout most of 2013. The most difficult year of my cancer experience wasn't the physical fight against cancer in 2011, it was the emotional fallout after cancer that finally hit me hard in 2013. Although PTSD is more commonly experienced immediately after a traumatic event, it's not uncommon for it to come to the surface months or even years after a traumatic event or life experience as it did with me.
Life In The Midst of Post-Traumatic Stress
On a typical morning when I was suffering from post-traumatic stress, I couldn't start my day until I stepped into the shower and had a good cry for 10-15 minutes. I was so afraid and felt so threatened, not just by cancer, but by everything and everyone around me. I was so tired of my situation, living my life month to month between scans and feeling like there was no end in sight. I felt like I was living my life with a gun constantly pointed at my head, and I just couldn't take it anymore. I couldn't go on like this. I couldn't do this anymore, and wanted out! I begged and pleaded to God to keep me safe and free from cancer. I feared being taken from my children and leaving them without a father. I didn't think it was possible to hurt this badly inside, to be having multiple breakdowns per day, every single day for over a month, and living in a state of complete fear.
After this morning ritual of weeping and praying in the shower, I’d pull myself together and get myself and our kids ready for the day. During this period of time, I was handling all morning drop offs at our daycare. I would hug them each goodbye, and sometimes the tears were already starting to flow again before I made it back to my car to head to work. As everybody else was casually heading out the door for yet another typical day without a care or worry, it was taking me every bit of courage that I had just to set foot out of my front door. I felt like I was stepping into a fire fight within a war zone, unarmed, defenseless, and completely vulnerable. My defensive instincts were in overdrive. Everything and everyone around me felt like a potential threat that I needed to protect myself from. I felt like I needed to run away, but to where? What was I running from? I was still cancer free, and my body was healthy!
Once I got to work, I would sometimes cry a little bit more in a quiet corner where no one was likely to find me, and then just tried to focus on whatever I needed to do that day. One day, my thoughts were so bad that I just couldn’t be at work. I had a visual sequence playing through my mind not unlike the Firefox movie sequence, and just couldn’t get it out of my head. The misery of fighting chemotherapy, and the wind blowing through the trees on a beautiful spring day made blurry by the fog of chemo. The feeling of my body struggling through another round of chemotherapy, with my heart rate hitting 160 just to get up to go to the bathroom, and blacking out if I stood up for more than 30 seconds. My body couldn’t keep up, and felt like it was getting ready to pack up and die. That’s a memory that I could stand to live without, “so this is what it feels like when you’re dying,” but that feeling and that visual kept playing over and over again in my head. Another part of the sequence was the last few minutes before I went down for my RPLND surgery, seeing all of the terrifying tools in the operating room, and then the first few minutes after I woke up, and learning soon thereafter that I had nearly died when my vena cava was torn. They kept me under an extra 12 hours because I had lost 5 units of blood and nearly bled out, and it was too dangerous to wake me up. I nearly became a statistic fighting cancer the first time, which lead to such dreadful thoughts about having to fight it again if my cancer came back. All of the most painful or terrifying moments from my 5 months of hell fighting cancer just kept playing over and over in my head, just like how the Firefox movie depicted. I had kept all of these fears and emotions buried, but the recurrence scare I had suffered brought them all the the surface.
My mind was so overwhelmed with negative thoughts and energy that I didn’t know what was real and what wasn’t anymore, so I was afraid of everything and everybody unless I knew without a doubt 110% that you were on my team. Everybody else just had to get the hell out of my life for awhile, and in some cases permanently. I felt like ‘Death’ was making his rounds, had me on his radar screen, and that I was next. My anxiety was so out of control that I had to take Ativan just to get myself calmed down enough to even be functional, but I hated Ativan. It made me feel loopy, and gave a euphoric false calm. I quickly gave up on the Ativan, and went with a half or full glass of red wine in the mornings instead, which took the sharp edge off these feelings. There are more than a few days when I rolled into work semi-intoxicated, but I was just trying to survive, and doing the best I could. I became completely withdrawn, and didn’t want to go anywhere or do anything except with those I had the utmost faith and trust in.
Everything about my life changed when I was diagnosed with cancer, and now everything was changing all over again when I started experiencing post-traumatic stress after cancer. I couldn't even go out to lunch with my new co-workers anymore. I loved them all and they helped me to feel normal again after cancer. Just having co-workers again and money to be able to go out for lunch was an amazing thing to experience after what I had been through. Cancer survivors take nothing for granted! But when post-traumatic stress kicked in, it created such a huge contrast between myself and others that just made me feel so abnormal. As they talked so casually about the news, sports, weather, or things going on in their lives, I was sweating out my next set of scans, stressing if they would be clear or not, and if I was going to live or die. A co-worker might mention something they wanted to do in a few years, but I was just worried about having a life to live at all through the next month! Oh, how I longed to be able to chat so casually about things and be so carefree! I loved these guys and still do, but just couldn’t be around them during this time. The same colleagues that had initially brought me so much comfort were now adding to my distress, simply because of the huge contrast between all of their lives and mine. I was so frustrated and disheartened, and just ended up feeling so awkward and out of place with people that I had come to love and enjoy the company of. I wasn't normal at all. I was in such a different place in life.
Just driving my car to go anywhere was terrifying while experiencing PTS, because I felt like every oblivious idiot on the road not paying attention was gunning for me personally. I still remember when one person turned across traffic in front of me a bit too close for comfort, and my whole body clenched up as if this was it. I realized how badly I had lost it when I actually caught myself ducking and sitting so low in my seat while driving around one day, as if an assassin were waiting for me at the next corner, ready to open fire as soon as they spotted me. This is how you feel when experiencing PTS, threatened at all times, on guard at all times, hyperaware of everything, and having to shape up everything around you as a potential threat.
This wasn't me. It was my sub-conscious mind recognizing external patterns from around the time of my cancer diagnosis, relating them to similar external events that I was experiencing at that time, and then pulling everything together on me. Sub-consciously my mind had made the associations without my knowledge, equated past patterns with the present, and thus feared that the worst possible dreadful things were about to happen! Run! Hide! Fight! This is bad! Get the hell away from whatever this is! Don't you see?? Do something!!!
I knew and understood consciously that this was all nonsense as I curled up in corners in tears day after day, but it's how my body and my sub-conscious mind was responding. It was the worst tug-of-war game between the conscious and sub-conscious minds. I knew things were okay, but my sub-conscious mind was panicking, trying to get me to run away, and going into meltdown mode because I had nowhere to go. I couldn't NOT be afraid. I had no conscious control, and was scared shitless for six solid weeks, and off and on throughout most of 2013. Post-traumatic stress is an entirely instinctual and sub-conscious response to just get the hell out of Dodge. But where do you go? Where was I supposed to run to? I wanted to run away, but had nowhere to run to, and just felt trapped.
Hitting Rock Bottom
One of the worst things about post-traumatic stress is just how ashamed and worthless I felt. I was so afraid, but didn’t know or understand why. I was two years out from my cancer diagnosis when I was getting hit with PTS hard. Despite the scare I had had, all scans and tests came out clear. My odds of recurrence were down to less than 1%, yet I was more afraid than I had ever been in my life. My thoughts were almost entirely consumed by cancer, painful memories, worries and fears, and the defensive instincts to just run or hide. I was too afraid to be alone, yet afraid to really be with anyone all at the same time. I was failing as a husband, and failing as a father. I couldn't even enjoy a sweet moment with my family without it being interrupted by the voices of demons in my head. "This will be the last time... You'll never enjoy this again..."
Rational thoughts didn’t matter. Ask any cancer survivor, and no matter how good their odds are or how little their chances of a cancer recurrence are, we all feel like it’s a 50/50 affair at best. A coin toss. It was more like 99/1 for me of being permanently cured, but that wasn’t good enough. These are rational and logical things, but post-traumatic stress is irrational, illogical, instinctual, and emotional. I just wanted this to be over and done with! I just wanted to wake up from this nightmare, but it was no nightmare. This was my real life. I had never felt so isolated and alone in my life, and didn't know how to make so many terrifying thoughts stop.
I knew I had hit rock bottom when I contemplated suicide.
I knew I had hit rock bottom when I contemplated suicide as a way to get these terrible instincts to let go. I didn't know how to make it stop, but knew that would do it. I was done with this and ready to give it all up. I felt myself teetering on the edge of oblivion, and had not an ounce of strength in the entire fiber of my being to stop myself from falling, I was that broken. I had done so well and had held it together for so long, but my cancer experience finally broke me in the most terrible of ways when I was ready to give everything up, simply as a means to end the attacks not of cancer cells invading my body, but of the terrible demons that had been flooding my mind.
Being Lifted Up and Carried By Love
Do you know what it feels like to be letting go of life, only to feel yourself being lifted up rather than falling after you let go? It’s something that I hope no one I know personally ever has to experience, yet is simultaneously one of the most loving and uplifting feelings that I’ve ever felt in my life. My wife, my soulmate, got into my mind in a way that only a soulmate could, pledging to love me forever no matter what, and that she would go to the ends of the earth for me if that’s what it took. She could have run away, and she could have given up and left. I know the thought had crossed her mind, but she never gave up on me, and never left my side, and finally found a way to get through to me. She got inside of my mind and beat these terrible demons off of me at a time when I was unable to fight back anymore. She found this song by Jason Mraz, "I Won't Give Up", and shared it with me as the perfect expression of her love.
I felt just like the scarred and battered soldier in the video. I felt so broken and worthless, but there was his beautiful woman by his side, who was never going to leave him as her love was unconditional. Imagine feeling pain so unbearable that you're ready to end your life just to make it stop in one moment, yet feeling the joy of such extreme and unconditional love lifting you up in the next. There aren't the words in the English language to describe how this felt. It was the feeling of going down in flames in a terrible death spiral and dying inside, yet the feeling of being reborn and renewed with such loving and positive energy at the same exact time, by angels and the unconditional love of a soulmate. I had never cried so intensely in my life in the last few days of January 2013. Extreme tears of pain and sorrow in one moment at having been ready to give everything up, but equally extreme, blissful tears of unconditional love and joy in the next lifting you up, and overpowering everything. My wife's love, and the way she found to deliver it, was the perfect message and expression of love that I needed to hear, at exactly the time I needed to hear it. I had let go inside, but my soulmate, surrounded by a few other angels, lifted me up with everything she had, and in that moment my demons were defeated. Six weeks of savagery in my mind were over. Love won.
It was the beginning of February 2013 now. The Superbowl had just wrapped up. Emotionally, I had missed the entirety of the holidays, most of December 2012, and all of January 2013. What was supposed to have been the happiest time of the year had been entirely consumed by and lost to PTSD after cancer. I felt just like Clint Eastwood's character in Firefox the entire time, but was happy that these terrible defensive instincts that lurk within all of us had finally relaxed their death grip on me. I no longer felt like my life was in danger, and the loaded gun pointing at my head was finally gone. I was so emotionally blown out that I just felt numb and shell-shocked in the days that followed. I still didn't even know what had hit me, but knew I had fallen so far, so fast. I thought I had been doing so well, but the inner world of my mind was shattered into a million pieces, and I was nothing but smoldering wreckage inside. I was absolutely wrecked, and a shell of a human being. This was my emotional ground zero after cancer. It didn't happen during cancer, nor in the months after my cancer fight had ended, but rather two years after my diagnosis.
The climb back up seemed impossible, but I felt surrounded by loving energy and knew that I could do it if I tried. It wasn't my time to go yet. My wife needed me, my family needed me, and I still had work to do here in this realm. Inspired by the love and energy that surrounded me, I started what would be my year long climb back up in February of 2013.
I had thought I was past everything, only to realize I was still at the beginning, and had so far to go.
Continue to PTSD After Cancer Part II - Coping and Overcoming
StevePake.com
A Snapshot of Post-Traumatic Stress
I arrived at work on a seemingly ordinary day on Thursday, May 21st, but found myself unable to think or concentrate at all. I felt a lot of nervous energy and anxiety building, but didn't know why. I had also started having cancer-related nightmares in the previous week, as if to predict something rotten coming. It turned out that this particular day was my last two days of chemotherapy, four years ago, and I remember those days all too well.
This short blog is a primer to my three-part series of essays about posttraumatic stress after cancer, what it felt like to experience, coping and overcoming, and all that I've done to manage life after. For so much more about posttraumatic stress after cancer, please visit my PTSD After Cancer landing page.
PTSD After Cancer Part I - What It Feels Like
PTSD After Cancer Part II - Coping and Overcoming
PTSD After Cancer Part III - Managing Life After
I arrived at work on a seemingly ordinary day on Thursday, May 21st, but found myself unable to think or concentrate at all. I felt a lot of nervous energy and anxiety building, but didn't know why. I had also started having cancer-related nightmares in the previous week, as if to predict something rotten coming. It turned out that this particular day was my last two days of chemotherapy, four years ago, and I remember those days all too well. I was so afraid that the chemo wasn't going to work, wondering if I was still going to die or not, and I was tired of being poisoned almost to death and feeling like complete hell. The only thing that stopped me from ripping off my lines and running away were an extra few doses of Ativan, and its induced haze and false calm. All of these fears and emotions had been buried, but here they were, suddenly coming to the surface four years later. I was right back in that oncology infusion room again as if it were happening now, and I was absolutely terrified. I went to a quiet and secluded corner at my office where nobody was likely to find me, and there I sat with hands trembling and my head between my knees as the tears started falling.
People say to just not think about these things, but they don't realize that I'm not thinking about them, consciously at least. It's from our sub-conscious. It's thinking about it, and causing us to re-experience these memories as if they were happening on that very day. The same powerful emotions of extreme fear, that fight-or-flight adrenaline, and the instinct to run away, right now, came out. I've stopped telling myself that it's wrong for me to have such episodes or that I shouldn't be feeling this way, even four years out. Never deny your own feelings. Love yourself, and accept what you feel not as right or wrong, but as uniquely you. This is me, this is my pain and my long repressed emotions, which for whatever reason decided to come out on that day, and not another, or never at all.
It was a rainy day, but I knew what I had to do, and that I needed the very best outlet that I've had through my survivorship. I went running in the rain for the very first time over my lunch hour that day, and loved it! All I did the first mile was cry, but I was flying. All of the long repressed pain, fear, and anxiety from this time came pouring out, and my sub-conscious finally got to do what it wanted to do the whole time and just run away from it all. Just as nature was cleansing itself, so was I. A sense of inner peace and calm finally found its way back to me after the first mile, and from there I just cruised. According to my running watch, I even set a new personal best 5K time by a few seconds at 29:41, only my second ever 5K run below 30 minutes. Somewhere along the line however, my running watch lost some distance, which caused me to have to run nearly two extra blocks than normal. My actual 5K time was probably more like 29:20, or as good as 29-flat, shattering my previous best! It was an instant mood lifter, but it mattered not.
What matters the most, and what's most important as a cancer survivor whether you're experiencing PTS or not, is simply knowing how to take care of yourself, and having all of the healthy and productive outlets that you need. Everything that I needed to happen on that run, happened in that first mile. The rest was just icing on the cake. When PTS first started hitting me hard at the beginning of 2013, I was blindsided. I had no idea of how to truly take care of myself, and suffered terribly for months until I figured it out. Rather than suffering for days if not weeks from a single episode of PTS as I had in the past, I went right back to work that afternoon feeling refreshed, calm, and at peace, and managed to have a productive day. Cancer survivorship has brought me many dark and stormy days like this one. Healthy and productive outlets such as running, writing, other forms of exercise, art in the form of photography, along with plenty of good times with family and friends have always seen me through these stormy days. Beyond every post-traumatic stress storm, there is light. The right outlets and the right people in your life, is what will see you through these dark times.
StevePake.com