Me back in fitter days, before hydrocephalus in 2020
forced me learn how to walk again.
My cancer journey began on a Monday afternoon in 2001. I was relaxing in a rocking chair in the living room, trying to soothe my way out of a headache. My wife was in our bedroom twenty feet away, napping with our one-month-old son Evan.
The next thing I knew, an EMT was helping me out the door to an ambulance. It turned out I'd had a Grande Mal seizure and gone unconscious.
At the hospital, they did a CT scan and found a tumor in my brain the size of a golf ball. Surgery was scheduled for the following Saturday, five days later.
Radiation and chemo took another eight months. And then after those long and dreary eight months, filled with so much worry and anxiety, they sent me home to start my new life.
I, of course, was excited to get going again now that all the cancer crud was over.
But they had told me the tumor would come back in three to five years and be worse the next time, so there was this clock ticking in the background, counting down my time left on earth. And with all the follow-up MRIs and false alarms over the next few months, I was in this almost constant state of fear. A few months into my new life, I realized I was depressed.
There I was: 32 years old, with a wife and 2 little kids, and a hole in my brain, and a promise I’d have to go through it all again.
I never really got over that experience. The fear and anxiety just kind of faded into the background over time.
Seven years later I was diagnosed with testicular cancer, and all those old worries came flooding back. But that got solved so quickly that it ended up being just a blip on the radar screen of my life.
So really, those two cancer experiences didn't help me grow and become a better person. In fact, if anything, I just became bitter.
Then in 2015, thirteen years after the first surgery, the brain tumor came back. I knew something had to go differently this time. I knew if I didn't work at it, I wouldn't grow as a person and I'd probably sink into a useless ball of sadness and bitterness, even worse than before.
It's a good thing I prepared myself. Because what was supposed to be a quick six week one-and-done surgery and recovery turned into a dreary 18-month hell of infections and surgeries and unnecessary radiation and equally unnecessary chemo. They eventually had to replace the bone plate on my skull, which meant removing the top layer of the lat muscle from my shoulder down to my hip and grafting it onto my skull.
But right near the start of treatment, I set a goal that kept me going. I would run a 50k trail run nine months after I took my last chemo pill. Beyond that, I made a pact with myself: I would learn to handle life's challenges without breaking down. In other words, I was going to start learning what it takes to be resilient.
So really, that cancer treatment experience in 2015 was a chance to learn lessons I hadn’t learned the first two times around. And for the most part, it worked. I really feel like I came out of it a better person than when I went in.
Since then, I've had to go through something even more harrowing – without a doubt the most difficult experience of my life. In 2021, a brain infection almost killed me. I was in the hospital for a month. A lot of that time I was having confabulations, these kinds of waking dreams where I was living an alternate reality. I couldn't get out of bed and they weren't sure I would even make it out alive.
My wife was staring at two possible realities: being married to a babbling, disconnected husband for the rest of her life, or becoming a widow.
Eventually, my neurosurgeon got me in for an emergency surgery and installed a shunt to drain the fluid that had built up in my brain. After that, I started to come back to my old self. I had to rebuild my memory and a lot of my thinking skills and learn how to walk again.
Then six months later, just as I was getting back to my old self, I had follow-up surgery to put a new plate on my skull. The operation irritated the brain so badly that I had to go through most of that process again.
But this experience, as shattering as it has been, has also created the most significant growth yet, as a husband and a father and just generally as a human being. It's like I'm a rough stone in a rock polisher and every experience has worn off a few more of those sharp edges.
So as of right now I've had something in the neighborhood of nine brain surgeries, two skull plate replacements and a skin and muscle graft, plus a permanent shunt installed to drain fluid from my brain. I've also had three major brain infections, two brain bleeds and one case of hydrocephalus. Plus a half dozen major seizures and dozens of little ones. My problem-solving, mental energy and short-term memory are a shadow of what they used to be.
But in that time there have also been some great things. I ran a 50k trail run (that's 31 miles) in 2016, ten months after taking my last chemo pill, and made a film about it. I ran a 50 miler two years later (without crying!). After the hydrocephalus, I learned to walk again from zero, and since then I've hiked in the mountains of the US and Canada and Scotland and Spain, although the return to running has been slow. My wife and I have made the journey through it all together and it's helped us grow in our relationship. But most of all, I've learned a lot more about what it means to try to live as fully as I can.
My oncologist called me Miracle Man. My neurologist said I shouldn't be able to walk, let alone run. After recovering from hydrocephalus, my neurosurgeon said that talking with me was like seeing Lazarus rising from the dead.
Even as my brain and body recovered, I found myself ravenous for all things related to the topic of resilience.
I digested written and video biographies of people who faced death head-on, through cancer, ALS, Cystic Fibrosis and other awful crud that’s part of the human condition. Podcasts and books talking about resilience in all its forms and applications. Online communities of cancer survivors and those facing the Big C for the first time, sharing common questions, showing that we are not alone in our struggles nor; are we weak for having them. Techniques that can help us handle stress, deal with loss and recover from setbacks. Existential psychotherapy philosophy on how to find meaning in the face of death and suffering.
I took them all in – all through the lens of the cancer experience.
This has resulted, I think, in a somewhat unique perspective on resilience and on the experience of living fully once cancer has made its appearance in your life. Life as a cancer survivor comes with some unique struggles and issues, or at least a unique combination, that are hard or maybe impossible to understand unless you’ve lived them.
All that to say that my journey of resilience is personal and it’s hard-fought. And it’s something I want to use and share with people who are going through that same journey.
If you're a cancer survivor, you and I have the shared experience of trying to rebuild our lives after cancer treatment. At the same time, you have your own unique and very personal journey to navigate, with your own unique issues and challenges.
I hope the curious survivor website will give you a few tips to help you on your journey of life after cancer.
-Brad