PTSD After Cancer Part I - What It Feels Like

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.

My angel, my soulmate, and the one I get to call my wife. My God, what a blessing. Photo taken in June of 2013 at Rehoboth Beach a few months after this madness. I was still hurting so badly inside and feeling so raw from the whole experience. I didn't know it at the time, but I was finally starting to find my way.

My angel, my soulmate, and the one I get to call my wife. My God, what a blessing. Photo taken in June of 2013 at Rehoboth Beach a few months after this madness. I was still hurting so badly inside and feeling so raw from the whole experience. I didn't know it at the time, but I was finally starting to find my way.