March 27, 2024, marks 12 years since I was diagnosed with what turned out to be stageIIIB rectal cancer.
4,383 days.
Bonus time.
Time that, on the terrible day we heard the words, “you have cancer,” I wasn’t sure I was going to get.
I had just celebrated my 43rd birthday.
Was seeing 44 even possible?
The odds were against it.
For an aggressive adenocarcinoma like the three-inch tumor that has grown on my rectal wall, there was a 95% likelihood of recurrence in the first five years.
Recurrence never happened.
As my friend, Cheri Pollack, wrote on FB the other day, “five percent is everything.”
Everything.
I just celebrated my 55th birthday.
Twelve more years of everything.
First line treatment worked for me. Oral chemotherapy (Xyloda) combined with 28 rounds of radiation aimed at my gluteal crease (still my favorite euphemism for butt crack), surgery to remove the tumor and implant, surprise, a permanent ostomy, and then 12 rounds of adjuvant (clean up) chemotherapy called FOLFOX.
There have been and will continue to be side effects from treatment: neuropathy in my feet, high blood pressure, hearing loss, etc. My treatment regimen was standard of care at the time, but long-term side effects weren’t discussed, or known for that matter.
Cancer survivors like me are living longer, and research is lacking on the true scope of long-term effects. I pray someone launches a longitudinal study of long-term survivors to better take into our account our medical needs, but that’s a soapbox for another day.
From practically the moment of diagnosis I shared openly and widely about my medical experience as a cancer patient. Every radiation session, the surgery, the chemo. Blisters, ostomy blowouts, fatigue.
What I didn’t talk about were the long nights of lying awake feeling the tumor pulse with every heartbeat, a thing that has been there quietly for months but was spoken into existence by my gastroenterologist suddenly felt alive. While the tumor pulsed, I wondered about life and death. Was this thing going to take me out? Would I survive?
I didn’t talk about the long nights of the soul during chemo where I couldn’t sleep because of the high-powered steroids that kept me awake and wondering if all of this was worth it in the end.
It’s probably going to come back, and worse the second time, I thought. Why the hell am I doing this?
I didn’t talk about the doubts, fears or anger that my life had changed forever because of three little words.
I didn’t talk about the grief of losing expectations of the life I had before cancer entered the picture, or about how the healthy body I was working toward would never come to be.
I didn’t talk about the survivor’s guilt I feel when people I love die from the same disease I had. Someone once told me I shouldn’t dare feel that guilt because there is too much to do. There is a lot to do, but that doesn’t close the hole in my heart where my love for Gary, Lee, Pandora, Michael and so many other people lives.
Honestly, there wasn’t space to talk about those things 12 years ago. Not openly, to be sure,
Cancer patients were and still are supposed to exude positivity because “attitude is half the battle,” “everything happens for a reason,” and “God doesn’t give us more than we can handle” and all that theological malpractice bullshit people think is comforting to people going through hard times.
BTW, none of that is even a little bit comforting.
if you say any of those things, I beg you to stop.
It’s hard not to get swept up in the toxic positivity of it all, and I regret any role I had in being toxically positive.
Embracing the notion that I was somehow Superman is a regret I carry. There are too many photos of me in Superman garb, collecting Superman things. I have a Superman tat that I plan to get covered up.
Seriously, I’m no Superman. There were no special powers that got me through cancer. Great medicine, faith and the support of people around me, that’s what got me through.
I had the hubris to write a book about my cancer experience just three years after my diagnosis. I don’t regret writing it, but it would be a much different book today. More “life is hard and we’re all in this together,” less “let me show you what worked for me.”
As a survivor, I feel like I’m finally hitting my stride and finding meaning in this life after cancer. I’m owning the mental health challenges I faced during treatment and still deal with as a long-term survivor.
My best friend, Ryan, has helped me immeasurably in this area. He’s a stage IV colorectal cancer survivor in treatment. We talk about cancer, and we talk about life, the universe and everything else. With him I feel seen and whole. I don’t have to be “on” when we talk. We laugh, cry, question and pray together. Our friendship truly is a balm for the soul.
Man Up to Cancer is also a big part of me coming into my own. Doing life alongside Trevor, Joe, Don, the rest of our leadership team and our growing community of men around the world has been healing and life-affirming. I don’t have to be “on” with those guys either, which is truly freeing for a PR guy who spends a lot of his life “on.”
Moving forward, I will be focused on working with people and topics that speak to my heart and fill my cup at this stage of my life.
For so long I’ve felt like I had to do everything I was asked because that’s part of the deal with survivorship.
I said yes to everything: event committees, leadership roles, board seats, speaking gigs, media interviews, etc.
For years that has all been well and good. I survived, I reasoned, so any and everything I could do to help others avoid what I’d been through made all of the activity worth doing.
I wanted to save the world.
The whole world,
But it’s not possible.
And it’s exhausting if I’m being totally honest.
Like having a second job.
I’ve been stepping back from some of my roles in the cancer space, and that will continue through this year. Ultimately, I want to focus on colorectal cancer and men’s mental health.
Fight Colorectal Cancer and Man Up to Cancer.
Not saving the whole world, just part of it.
I think of it as “dancing with the one who brung me” and staying on the floor with the one who keeps me going.
Ryan and I have ideas about some projects we want to do together. Big ideas. I want to make room to be able to act on them.
Pastor Amy Carole Figg Ley and I have been circling around the idea of a writing project together. We’ll figure it out eventually but I want the headspace to get there.
There is a lot I want to do with people I care about, and that means some things have to go.
Speaking of people I care about, if I’ve learned anything during these 12 bonus years it’s that we are here to love and be loved.
I am blessed to have so many incredible people in my life, many of whom have changed my life in ways I didn’t expect.
I wrote in my book that if you took a family photo of the people in your life when you’re diagnosed with cancer and when you finish treatment, some of the faces and where people are standing would change.
The before and after photos would be staggeringly different 12 years after diagnosis. Many of the people from that first photo aren’t in the second one at all. There are lots of new and even more important people in the second photo.
That’s life, right?
Things change. People change. Love remains.
Beth Nielsen Chapman sings it best:
“All that matters when we’re gone
All that mattered all along
All we have that carries on
Is how we love.”
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