I was diagnosed with Stage 3 bladder cancer in 2020.
My sons were 5 and 9 at the time.
I had to decide not only if I would live but also how I would live.
The options did not seem good. Should I get the dangerous surgery my doctor was urgently recommending? Or try something less invasive that would not "cure" my cancer but allow me to enjoy the summer with my two young kids?
I'd first been diagnosed with Stage 3 bladder cancer in mid-2020. I had two boys, then aged 5 and 9. I had an aggressive tumor. The news made no sense — I had no risk factors, like prior tobacco use, and at 59, I was young for this type of disease but old to be a Dad to young kids.
I'd gotten married to my 12-years-younger wife at age 47. Even while we were dating, I remember asking: "But what if I get sick? Do you really want to be taking care of an old man?"
Recovery was tough
After a four-month course of chemotherapy, a doctor-guided surgical robot removed half my bladder, sending me home with a catheter and a half-dozen abdominal scars where the machine had sliced into me.
Eight weeks later, a massive infection at my surgical site sent me into septic shock, and I came as close as I've ever come to dying. For a year, things slowly stabilized, though my energy and mood were slow to recover. Then, during a routine follow-up, bad news: my cancer was back. This time, it was treated with more surgery and immunotherapy. We hoped we'd gotten it, but six months later, my cancer returned.
"We're going to have to remove your bladder," my doctor said. "That's the only way to prevent the cancer from spreading to the rest of your body."
Since the previous operation on my bladder had been nearly fatal, and such complications for this procedure were frequent, I felt myself resisting the advice and thinking of my kids. Bladder removal — the medical term is cystectomy, and about 25% of bladder cancer patients end up undergoing this procedure — means living with a "diversion," a kind of tube that routes urine out of your body.
Such diversions are manageable, and many do well with them, but they're not perfect. The operation often impairs sexual function. One option meant I'd likely have to sleep wearing diapers, and another required wearing a collection bag. Would I even be attractive to my wife? How was I going to roughhouse with my boys?
I didn't want to be a sick dad
I remembered a childhood friend whose father died when we were in grade school and how my friend changed, carrying a sadness and anger that seemed insurmountable. I didn't want to be the sick dad who couldn't show up to ball games and chorus concerts, who couldn't go on hikes or bike rides. But I also didn't want to be the dad who disappeared.
I decided that, at the very least, I'd postpone removing my bladder until fall or even winter. As a journalist, I had no fear of calling up random doctors who were practicing a newer technique called "bladder preservation," even in complex cases of bladder cancer, as mine was, using combinations of drugs and surveillance. There was one clinical trial going on that seemed to show promise, said one of the doctors I spoke to. I couldn't join that trial, but it wouldn't be hard to replicate. "If it were me," the doctor told me, "That's what I'd do. There's some risk, but you can have your summer. Maybe more."
My surgeon didn't agree. "You've already failed drug therapy once," he said. I was insistent. I was going to wait. I was going — with the support of doctors — try a new combination of drugs. My doc frowned: "I'm happy," he said, "that you understand your choices."
My dad died of cancer, and his last months were horrible
In the end, it came down to a decision: If I was going to live, how was I going to live — and if I was going to die, how would I do that?
I'd watched my own father die of cancer a decade before, and the last months of his life were horrible, out of his control, as his disease had progressed to where his ability to make his own medical decisions was compromised.
Maybe there was an alternative: keep my body intact and set an example for my kids by continuing to make the best decisions I could. To be the best dad I could. I didn't want my kids to see me go to "war" with cancer, a common metaphor that helps a lot of people but just isn't my style. I wanted to approach my illness with determination but also acceptance, even curiosity.
For the next year, with the help of a new doctor, we pursued the bladder preservation strategy. It wasn't easy. I had a major complication — kidney failure — that threatened to put me on dialysis. And the time I was on the therapy was truly not fun. But we succeeded in making my cancer "chronic." Right now, I show no sign of disease, and if it comes back — there's about a 50% chance of that happening, but those numbers will improve as time goes by — we'll deal with it.
I understand that I've taken a risk. It feels worth it. When I was really sick, I remember walking my son to school. I was tired and moving slowly. My son silently locked his arm in mine and helped me as I stepped down the curb, scanning for traffic. I said goodbye to him at the schoolyard and made my way home in tears. I was proud of him, but I also felt determined to embrace however long the rest of my life would be, to get stronger, but never hide my vulnerability, and use that vulnerability the best way I could: as a source of strength for myself and my family.
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