I've been dutifully loading up on the anti-seizure medicine, gabapentin. Once I reach therapeutic level, it's supposed to have a salutary effect on the pain that often accompanies radiation therapy, building slowly as week succeeds week. The opiates will always be there as a pain-control strategy of last resort, but my radiologist is hopeful we can avoid them as long as possible, in order to stave off addiction.
Today I came across an online essay by a survivor named Hans Casteels. It's about the cancer survivor experience. It sounds true to life. Here's an excerpt:
"Alright, let’s not kid ourselves. The most existentially important thing for a person with cancer is not hope. It is not courage. It is not resilience. It is not even survival, which is awkward, because survival is the thing everyone else becomes absolutely obsessed with, like it is the only metric that matters, the only acceptable outcome, the only box that must be ticked before you are allowed to have an opinion about anything ever again. The real prize, the thing that sits underneath all of that Hallmark vocabulary, is agency. Control. The stubborn, irrational, deeply human insistence that you are still the one holding the pen, even if the paper is on fire and someone in a white coat keeps trying to take it out of your hand.
Cancer does not just attack cells. That is the PR version. Cancer attacks narrative. It storms into your life and immediately rewrites the plot without consulting you. You were minding your own business, worrying about normal things like whether your password was strong enough or whether the pizza place had started using cheaper cheese, and suddenly you are rebranded as 'a cancer patient,' which is a role that comes with a pre written script and very limited creative input...."
I can relate to this. When I pull up on my laptop, these days, a week's worth of online calendar and survey the colored blocks, the majority of them are now medical appointments. And that's before I've entered into the calendar the daily radiology sessions due to begin the first week of March.
Hans continues...
"And somewhere in the middle of all this, something subtle and brutal happens. You stop being a person who has cancer and start being cancer who has a person....
Everyone means well. That is the most sinister part. The system is designed to help you, save you, optimize you, extend you. But in the process, it often forgets to ask the one question that actually matters: what do you want to do with the life you are allegedly trying to preserve? Not 'what treatment do you want,' which is the fake version of agency. That is like asking someone on a sinking ship whether they prefer the red or blue life jacket. The real question is much more uncomfortable, which is why it almost never gets asked: what still makes your life feel like yours?...."
For me, at the moment, it's writing. Not just this blog, but the stuff I'm doing on my Substack, Curated Sermon Illustrations.
Reflecting on that work, I've started calling myself a holy ghostwriter -- tapping my personal sermon-illustrations database to provide a daily dose of metaphor, story, quotation or poetry for the benefit of colleagues still engaged in weekly preaching. It's a practical application of the system I promote in my recently-published book, Illuminating Sermons: Curating Illustrations that Inspire.
Because I can write the daily Substack posts in advance, it's well-suited to navigating the peaks and valleys of the cancer experience. Substack will obediently churn out my pre-written posts on a daily basis, even if I reach the point where the radiation has laid me so low that I don't feel like writing anything for a while.
More from my fellow survivor, Hans...
"Hospitals are efficiency machines. They run on throughput, compliance, standardization, measurable outcomes. None of those things map neatly onto the messy, irrational, contradictory reality of a human being trying to make sense of their own existence while their body is actively betraying them....
And that, ultimately, is the real existential fight of cancer. Not against death, which is inevitable and frankly overrated as a philosophical concept. The real fight is against becoming invisible inside your own life. Against waking up one day and realizing that everyone knows your diagnosis, your staging, your biomarkers, your treatment plan, your survival curve, but no one knows what you actually care about anymore. Agency is what keeps you from dissolving into a medical narrative. It is what lets you say, quietly but stubbornly, this is still my life. Even now. Especially now.
Cancer can take your hair. Your energy. Your certainty. Your future. It can colonize your calendar and weaponize your body against you. But the one thing it should not be allowed to take, the thing that matters more than anything else in the end, is your authorship. Because once you lose that, you are not just sick. You are no longer the main character in your own story. And that, far more than mortality, is the deepest existential loss of all."
So, good friends, wish me well as I seek to keep this authorship thing going, in the midst of it all. If you want to check out my writing, you can do that by navigating over to my Substack. Feel free to subscribe to it, if you're so inclined, to get the daily emails. You can choose the free-subscription option, if you prefer -- I'm not in this for the money. I'm far more interested in staying relevant. And you can help me do that by reading what I write.
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