NOTE: this is part of an ongoing series of posts about my journey with prostate cancer. So far the posts include:
1. January 30: “When Cancer Comes Calling”
2. February 16 – “Waiting in Mutual Ambush”
3. March 11 – “My Prostate is History” (on the surgery)
4. March 13 – “Letters Before Surgery” (saying goodbyes)
5. March 14 – “Cancer Prognosis: Uncertain Grace”
6. March 22 – “Post-Surgery Incontinence”

Post-Surgery Incontinence: My Story – Drip by Drip
David R. Weiss – March 20, 2025

Incontinence: it’s the gift that just keeps giving. But hopefully not forever! Still, it is one of the inevitable aftereffects of a radical prostatectomy (the complete removal of the prostate). When the alternative is giving cancer free reign in your body, it seems like a small price to pay. Then again, when you’ve just wet yourself for the tenth time in a day—before noon, you do start to ask, Really?!

Before I plunge into my tale of incontinence, a few disclaimers first. As I’ve mentioned in prior posts, I am not a urologist. I don’t even play one on my blog. I’m just a guy going through prostate cancer treatment—committed to understanding it as best I can. I try to be medically accurate, but I’m foremost writing out of my lived experience. And, as a writer, my “healing” includes processing my journey by writing about it, hence the “TMI” is part of my healing. But maybe you learn a thing or two as you listen in. Cool.

Lastly, while incontinence is considered a given after prostate surgery, it resolves on widely different timetables given a variety of factors—including (perhaps most of all) just plain luck. The fact that my incontinence seems to be resolving rather quickly is not to my credit. I’ll take dry underwear over wet any day, but there is no secret I can share. And if your journey was or is different than mine, you have my full respect for walking your own damp path with as much grace as you’re able.

Two key muscles—sphincters, as they call them: circular muscles that act like rubber bands—are crucial in continence: keeping your urine in the bladder until an opportune time. One is the internal sphincter (called the bladder neck sphincter on the diagram). Internal because it sits inside the bladder, right at the bottom where the bladder meets the prostate. The other is the external sphincter (hint: outside the bladder), which sits below the prostate. It’s embedded in the pelvic floor muscles and is the “last gate” that holds your pee back.

The internal sphincter works autonomically; it’s controlled by your body (without asking you). It’s involuntary. The external sphincter, however, is the one you have (some) control of. It normally operates in sync with the internal sphincter, usually at your subtle invitation. The swift moment of “Ahhhhh …” as you let your pee begin, that’s you telling your external sphincter, “It’s go-time.” But if you’re on the train, and your stop is 15 minutes away yet? Or if you need to desperately wait for the person before you to clear out of the bathroom? Or if you just need to stop your pee midstream because it’s spraying past the bowl? Your external sphincter is your best friend in those scenarios. It can throw an emergency brake that stops your pee right before it enters your penis, even if it’s already breeched your bladder. Except—

Each sphincter muscle sits immediately adjacent to the prostate. Or in my case, where the prostate WAS. That’s where incontinence enters the picture. Grateful as I am for the radical prostatectomy that removed my cancerous prostate, there’s inevitable collateral trauma in the neighborhood.

The neck of the bladder puckers as it meets the sphincter muscle, the way the stem of a balloon puckers at the knot. And that puckered neck, plus the internal sphincter, push right up against the prostate. Because the goal is to remove 100% of the prostate (not 98%, not 99%) that means peeling, scraping, trimming, cutting the prostate ever so carefully away from the bottom of the bladder. Bruising is inevitable. And understatement. There’s a knife involved and soon after that there’s a needle pulling a tiny barbed-wire thread through the bladder neck tissue to secure the loose end of the urethra stretched from the far side of the prostate. OUCH.

Yes, I was sound asleep for this, it isn’t hard to realize that all this is traumatic for the bladder neck and the sphincter muscle. Even the best-skilled surgeon (like mine!) cannot avoid leaving this sphincter in a royal funk (thoroughly unpuckered)—which is only heightened by the immediate insertion of a catheter, which for nine days, irritates the bladder neck and keeps the sphincter from sphinctering, all the while telling the tissue, “There, there, now, it’s all better.” Um, bullshit.

As for the external sphincter, it didn’t get the worst of it, but it did have the traumatized cut-loose end of my urethra tugged on (this is not an image I enjoy conjuring up!)—hard. That loose end, passing through the external sphincter, needed to be stretched across the gap left by my just-removed prostate and get stitched to the bladder neck. (Again, with barbed wire thread.) And then this sphincter, too, which happens to circle the narrowest bit of urethra, was also propped wide open by a catheter for nine days. Both sphincters end up with bruised egos and more—and are forbidden from sphinctering for nine days. No wonder that by the time the catheter comes out, a moment of agonized joy for me, they’re pissed. And it’s a disposition they’re only too eager to pass along … right in my pants.

Yes, this is part and parcel of the healing process. It is a step forward—toward a life less immediately threatened by cancer. (Not threat-free but doing our due diligence toward that end.) So, I’m not complaining. Still, it’s hard to feel like saying “Thank you for that drop of healing,” each time I pee myself. Perhaps a better man than I could do that. I call it good if I can get by with an eye roll, a sigh, and yet another trip to the bathroom.

So, yeah, both of these sphincters get taken for a ride and then some. And that’s in a textbook prostatectomy (which I’m told mine was). Even in that best case, these muscles don’t just bounce back and the bladder neck doesn’t just pucker up again overnight. They need time to heal. The nerve endings that carry the signals need to “wake up.” And they try. But the need to pee won’t wait. Hence, incontinence. For days, weeks, months while everything sorts itself out.

For most men (one study suggests about 70%), post-surgery incontinence lasts for six weeks to three months. A lucky 10% of men—to no credit of their own—find that it resolves sooner, in a matter of weeks. Another 10% wrestle with incontinence for three to nine months. And in the last 10% it will take up to a year to resolve. (In a very small fraction, maybe 1%, incontinence can become semi-permanent and/or require further surgery.)

I knew this only at a very general level before surgery. Mostly, just that I should “plan on being incontinent for several months.” So, I did. In the week or two before my surgery I bought a waterproof pad for my side of the bed—not wanting to soil our mattress. I picked up a package of something like “Depends”: a pull-up protective and absorbent disposable underwear; basically, an adult male diaper. And a package of men’s “Guards”—front pads to put in my underwear to catch “leaks.” I even invested in some rather pricey men’s washable underwear with sewn in absorbent pads sewn in front, so I could be “green” even while dealing with uncontrolled yellow. I wasn’t dreading the incontinence, but I didn’t really know what to expect either.

As soon as the catheter is out, both sphincters set about resuming their duties. With very mixed success. The internal sphincter has never consulted me about anything—autonomic, remember. So, as best as I can figure, it’s sphinctering in a sort of half-assed, tissue-bruised, pucker-tuckered way. Like a faucet that has a very slow drip even when turned off. It will get better as the nerves fully wake up. As the neck of the bladder gets it pucker back. And as the bruising fades (and the stitches dissolve).

Until it does, everything rests on that “last gate”—the external sphincter that closes the urethra right before it enters the penis. Literally: that tiny trickle of pee runs down my urethra until it reaches the external sphincter, the one I can clench shut. Which I’m doing these days, almost all day long. I mostly don’t have to actively think about it. Wherever I am, if not in a bathroom, my mind knows that a slight clench is my safest bet. Until it isn’t enough. Oops.

Most post-surgery incontinence—and all of mine, every last drop—has been “stress incontinence.” Or, as I like to say, multi-tasking messes. These days I can’t cough and hold my pee at the same time. Or sneeze. Or stand up. Or sit down. Or carry a plate to the sink. Or lift much of anything. Or hold the door open with my foot. Pretty much every bit of extra exertion—especially unexpected—distracts that external sphincter for just a split second. I re-clench almost immediately, but it’s too late. A dozen or so drops … drip out. And I’m wet. Damn. A dozen times a day or more. It gets worse in the evening because sphincters get tuckered and lose their pucker.

Thankfully (and to my surprise), I’ve slept dry every night. I’ve had to get up two or three times a night to empty my bladder because (thankfully) my sphincters roused me before wetting me as the need to clench disrupted my sleep. Turns out that because our sleep is usually not bothered by unexpected exertion, post-surgery stress incontinence resolves most quickly during the night. As for daytime, the first few days without a catheter I wet myself (though just barely) pretty much hourly. I never all out lost control, but drops are drops. And once you know you’ve leaked, it’s not much consolation to tell yourself, “Yeah, but the pad’s got this.” A dozen drops, a dozen times, is gross. And before long the pad smells or the underwear are undeniably damp. My only “secret”: I’ve been folding up strips of paper towel in front of my washable padded underwear. As soon as I can sense I leaked, I head to the bathroom and trade out the paper towel, which (I tell myself) lessens the dampness on the pad—and the smell. And I am getting better.

I hope (and appear) to be part of the fortunate few for whom incontinence will last less than six weeks. I’m two weeks post-surgery—barely one week catheter-free—and I’m only leaking a bit off and on during the day. Bothersome? Yes. Debilitating? Hardly. I spent five hours yesterday afternoon at the Eden Prairie public library. Other than making regular visits to the restroom to trade out paper towels, no one knew I was on a slow drip of urine leakage.

Healing happens at its own pace, and it seems that holding out some compassion and patience for my body as it heals may be helpful. And learning Kegel exercises can’t hurt—although, this is hardly a quick fix. All the evidence suggests that developing a regular routine of Kegels to strengthen your pelvic floor muscles will make a difference after four to six weeks. Fingers crossed I’ll be fully continent before then. But if not, I’ve started on Kegels: three sets of ten reps each day. Takes less than five minutes for each set. These exercises work to strengthen the pelvic floor muscles that surround and anchor the external sphincter. They don’t directly stop your pee, but they indirectly give your external sphincter all the extra support it needs to reclaim its job—and they may indirectly help tone the muscles of the sphincter itself.

Again, these are probably most important for the 70-plus percent of men who deal with post-surgery incontinence for months. By the time my Kegel routine has made my pelvic floor buff, I’ll hopefully be staying dry all the time anyway. But all that Kegeling won’t be in vain, because it will also help me recover and maintain an erection (all wistful thinking at this point in my healing) and may even provide a pleasure boost during sex. But that’s another post for another day.

Some parting thoughts on incontinence. Our bodies are wondrous. So much of what we need to happen to stay alive happens without our even thinking about it. From heartbeat to digestion, from breathing to collecting our waste, our bodies continuously grace us with life. And in those times when those processes get disrupted, we become keenly aware of how easily we take them for granted. How fragile our lives are—day in and day out. And how hard our bodies work—silent, unseen, and without seeking attention—just so that we can be.

It is humbling. It makes me appreciative of what I rarely notice happening—in me. It also invites me to embrace the awkwardness of being incontinent as one more facet of my humanity. There is no shame in it. Inconvenient? Yes. Annoying, at times? Sure. But no shame. Whether my (or your) incontinence lasts for four weeks, four months, or forever, to be cradled, however imperfectly, by our bodies is grace.

Of course, there is a much thicker conversation to be had here. Because bodies are fraught in multiple ways. Disease and injury, social conditions, environmental toxins, irresponsible behavior, and more, all impinge on our bodies’ capacities to do what bodies are designed to do. And good fortune, dumb luck, small choices, and practiced discipline, can support and enhance our bodies as well. Much could be said. But for today it enough to be clear that shame has no part in this equation. And that grace does.

Lastly, cancer is a hard-fought tutorial in the truth that we are embodied. I am not “exactly” my body. It is too little to say I “have” my body, as though it were external to me. And (in my view) it is too much to say I “am” my body, as though the limits of my body define me. It is more complicated than that. Again, a much thicker conversation to be had than in a closing couple of paragraphs. But worth opening, nonetheless.

The me that dreams, loves, hopes, hurts and so much more is inextricably—graciously—entangled with my body. My sense of self is shaped by my bodily capacities—and incapacities. The meaning I fashion for how I move through life is part of that embodied conversation. Cancer and incontinence now have a claim in my story. I can wish they did not. Or I can let them enrich the tale. Perhaps it is okay to affirm the first: I wish they had not come my way. But it is essential to affirm the second: now that they are here, let me weave them into the tapestry of who I am.

Even if they do not become central to my story (they will for some persons!—and one or both may yet lay claim to another chapter in the future of my story), it matters that I allow them to leaven the sense of self I carry. Because there is no way (at least not in this life) to be, without being embodied. And the me that I am, has to be embodied in my body, not someone else’s. And not a body that I hold in contempt.

My story—and your story—is always told by many voices. Cancer and incontinence each have a voice in mine now. But they are not me. So, as I sheepishly note the latest leak that comes alongside my healing, somewhere behind the eye roll and the sigh, there is this bedrock conviction: I am glad to be here, damp and all. And I am determined to be a force for good and a source of kindness in the world, even while I drip.

That’s my story. And, yes, it will change over time. But I intend to do all that I can to keep the gladness and the goodness and kindness front and center.

*******

David Weiss is a theologian, writer, poet and hymnist, “writing into the whirlwind” of contemporary challenges, joys, and sorrows around climate crisis, sexuality, justice, peace, and family. Reach him at drw59mn@gmail.com. Read more at www.davidrweiss.com where he blogs under the theme, “Full Frontal Faith: Erring on the Edge of Honest.” Support him in Writing into the Whirlwind at www.patreon.com/fullfrontalfaith.

NOTE: this is part of an ongoing series of posts about my journey with prostate cancer. So far the posts include:
1. January 30: “When Cancer Comes Calling”
2. February 16 – “Waiting in Mutual Ambush”
3. March 11 – “My Prostate is History” (on the surgery)
4. March 13 – “Letters Before Surgery” (saying goodbyes)
5. March 14 – “Cancer Prognosis: Uncertain Grace”
6. March 22 – “Post-Surgery Incontinence”

Cancer Prognosis: Uncertain Grace
David R. Weiss – March 14, 2025

I’m sitting out on the porch in 74-degree sunshine. Wearing pants!

I savor the sunshine with a certain melancholy delight. This is climate chaos bearing down on us. And while I can enjoy the warmth in mid-March—it is undeniably nice to recuperate in the sunshine—I know the long arc of this tale, and it does not end well for us.

But wearing pants—this is pure joy: because it means that, after nine days, I am catheter-free. For sheer tactile delight, nothing quite matches the mere stillness in my urethra. For the first time since surgery, my penis is not cowering, pulled back as though it could will itself to disappear from all the fuss going on around it. I have some amends to make with my manhood. But for today, the truce in my trousers in enough.

But Prognosis is the P-word that drew you in. Here it is in a single sentence: I am currently cancer-free although my prostate cancer will almost certainly make an encore appearance at some point and in some place down the road. Hence, uncertain grace. Let me explain.

Surgery went very well, says my urologist-surgeon. They were able to remove everything they went in to get, and without any complications. My incisions are healing well. My bowels have resumed their tides. And my urethra is putting down fresh roots at the lower neck of my bladder. (That’s surmised, of course, but backed by evidence in the form of the pale-yellow urine that it’s successfully delivering from bladder to toilet.)

I am cleared to bathe and to drive. My only real limitations are lifting (not more than ten pounds for another month—owing to the way my abdominal muscles were manhandled by Mr. Robot) and no bike riding for two more months (while the empty space my prostate once occupied above my perineum gets settled back down).

Now, for the nitty gritty. The pathology report on my whole prostate revealed cancer at a Gleason Grade 9 (where 10 is the worst). This matched exactly what my biopsy had shown. It had spread through 25-30% of my prostate (all on the left side) and was rated as a Stage T3 (on a scale of 1-4). Stage T3 signifies advanced cancer that has spread into surrounding tissue but has not yet metastasized to other organs or places in the body. That surrounding tissue was the seminal vesicle and neurovascular bundle on the prostate’s left side. Again, the MRI and PET scan had suggested this, so also, no surprise.

The only “surprise” was a very small “positive margin”: a place where the cancer had reached the surface (the capsule) of the prostate such that when the prostate was cut out, some cancer cells may have been left behind. (21% of all prostate cancers have positive margins.) This is typically bad news. (It is never good news.) However, two things put it in perspective in my case. First, the length of positive margin was very small (< 3mm or .1 inch). Second, because the cancer had already spread to the seminal vesicle and neurovascular bundle, it had already “left” the prostate in those places. So, my prognosis and plan of treatment will be the same as it would have been even with a clean/negative margin.

The good news is that the two lymph nodes removed were cancer-free. Lymph nodes are sort of like the ventilation system in a building: interconnected throughout the body. Once cancer accesses the lymph nodes in one part of the body, it can potentially move through “the ventilation system” and end up in another part of the body. That the lymph nodes nearest my prostate were cancer free is good news indeed.

What it all means. Today, with the cancerous prostate, seminal vesicle, neurovascular bundle all removed, I am currently “cancer free.” Emphasis on currently. But the combination of aggressive cancer (Gleason 9) and its actual spread into nearby tissue (Stage 3) and the very small but detectable positive margin, still puts me at “high risk” of recurrence. At some point. (Like 70% in the first two years and greater than 90% by year ten. My 15-year survival odds sit at 58%.) In other words, “cancer free” really just means that as of today, any cancer cells that may (likely) still be in my body are simply too few and too scattered to be registered by any imaging or even by a PSA score. There is no detectable cancer in my body today. Whew?

Of the few scattered cancer cells that may (likely) still be there, some will be attacked and killed by my immune system. Some will die of their own accord having not found a new host. And some handful may (likely) eventually set up shop somewhere as a “metastatic deposit” and start multiplying again. Ugh. There is no way to stop this. But there is a way to monitor it and intervene quickly if/when it happens.

In three months, I’ll have a new PSA test done. It should theoretically be ZERO (undetectable by the test), because my prostate is gone, and the PSA test measures a protein only produced by prostate cells. A normal PSA score is anywhere between 1.5 and 4.0 ng/ml (nanograms per milliliter). If mine registers even a negligible score of 0.1-0.2 ng/ml (that’s unimaginably low, but still detectable) that will tell us that some prostate cells have organized themselves in my body—and those would be cancer cells “born” in my prostate.

This is called a “biochemical recurrence” because it can be inferred from the blood test even though the cancer is far too small to be picked up by an MRI or PET scan. By the time it grows big enough to be “visually” caught by scan, the PSA is usually up to .5 ng/ml. But time matters, and we won’t wait for a determination of “clinical recurrence” on a PET scan. The moment a biochemical recurrence is shown (the earliest would be in three months, but it could be three years, or thirteen!), we begin treatment.

I would undergo a course of external beam radiation therapy targeted at the prostate bed (the space where the prostate used to be). Honestly, this is a bridge I’d rather not cross. But the cancer isn’t asking me. So, we’ll just have to wait and see. Following that course of radiation therapy, hopefully my PSA would again be undetectable. That would indicate we had killed off the cancer. Still, because the cancer at 0.2 ng/ml can’t yet be seen on a PET scan, we’d really just be guessing it was in the prostate bed. If it were located somewhere else, we’d have missed it; my PSA would continue to rise, and we might have to wait until it was picked up by a PET scan.

BUT—the “good” news is that research has shown that 80% of prostate cancer recurrences begin in the prostate bed (15% in the lymph nodes; 5% in bones). Even though we can’t see it there, we know there’s an 80% chance it’s in the bed. And the cure rate by radiation is best (as high as 80%!) if it’s used as early as possible. Pretty cool—well, for cancer. It’s sort of macabre yet fascinating that science has made huge strides in understanding the nature of cancer, allowing us to produce more promising treatments.

(Actually, what’s truly macabre is the Trump administration’s commitment to un-funding all manner of scientific and medical research. Honestly, the only “efficiency” gained by that, is that a whole BUNCH of us will die a whole lot sooner. I very much doubt anyone meant to vote for that. But that’s an essay about a whole other cancer …)

So, uncertain grace. Today I am well. In another essay I’ll explain how incontinence and erectile dysfunction are inevitable “party favors” that come with a radical prostatectomy. But today, in the sunshine—in my pants, no less!—it’s enough to discuss my cancer prognosis. I am surely “better” than I was last fall with the cancer growing undetected in me. And I am surely “better” than I was just two weeks before surgery. But “cured” is a word I may never wear again. And that’s okay. I may be “cancer free” the rest of my life. Or I may (more likely) find my life once again interrupted by unwanted company.

On June 16 when my first post-surgery PSA score is done my odds could improve. Or not. I’ll get a fresh PSA (and fresh odds) every 3 months for the first year, and every six months for the second year. Every year I remain cancer-free my odds get better. But the bottom line is I will live in this uncertainty. Probably forever. Which is why I choose to live in it with grace. Accepting each day as gift, each relationship as gift, each opportunity to weave words as gift. Each chance to do good in a troubled world as gift. Truth is, I never had a lock on certainty. None of us do. Now that I’m clear about the uncertainty, I can revel in uncertain grace.

*******

David Weiss is a theologian, writer, poet and hymnist, “writing into the whirlwind” of contemporary challenges, joys, and sorrows around climate crisis, sexuality, justice, peace, and family. Reach him at drw59mn@gmail.com. Read more at www.davidrweiss.com where he blogs under the theme, “Full Frontal Faith: Erring on the Edge of Honest.” Support him in Writing into the Whirlwind atwww.patreon.com/fullfrontalfaith.

NOTE: this is part of an ongoing series of posts about my journey with prostate cancer. So far the posts include:
1. January 30: “When Cancer Comes Calling”
2. February 16 – “Waiting in Mutual Ambush”
3. March 11 – “My Prostate is History” (on the surgery)
4. March 13 – “Letters Before Surgery” (saying goodbyes)
5. March 14 – “Cancer Prognosis: Uncertain Grace”
6. March 22 – “Post-Surgery Incontinence”

My Prostate is History: How It All Went Down
David R. Weiss – March 11, 2025

[Read this as a 5-page pdf if you prefer.]

I’m now on the far side of cancer surgery. And, temporarily at least, cancer-free. But I’m far from recovered, and I’m still reflecting on everything I’ve been through. This is the next chapter of my story. In this essay I’ll write about the surgery itself. Caveat: I am not a surgeon, plus I was asleep during the surgery! I’m doing my best to be accurate here, but don’t rely on my notes for your own diagnosis or treatment. Find a doctor!

PRE SURGERY

Back on January 16, the same day my urologist reviewed my biopsy results with me, we penciled in March 5 as a tentative date for surgery. This was the soonest we could safely schedule it, allowing 7-8 weeks for my rectum to heal after the biopsy (on January 10) that confirmed cancer—and confirmed it as aggressive. In fact, aggressive enough to require a January 27 PET-PSAM scan to assess whether the cancer had spread beyond my prostate—a finding that would’ve made surgery pointless … and sent me and Margaret down a very different path of treatment.

Thankfully, that scan showed that all the cancer appeared to be still “in-house”—in my prostate. So, we inked in March 5 for a radical (complete) prostatectomy. All I could do in between was hope the cancer cells would still all be right there when the urologist (also my surgeon) went in to get them.

This is how that all went down.

Besides stopping all vitamins and supplements a week beforehand, the only real “prep” I had for surgery was to pack an overnight bag for my one-night stay in the hospital—and to shower. Twice in the twelve hours before surgery. No, I’m not that dirty! It seems all of us (you, too!) play host to whole communities of bacteria on our bodies. Some downright beneficial, a few free loaders just passing through, and some with less than honorable intentions. Thing is, any one of them—even the beneficial ones—have the capacity to start a riot of ruin if they wind up on the inside. So, with the plan being for my gut to get pierced five times on Wednesday morning, my job, beginning Tuesday night, was to make myself squeaky clean.

I showered twice, Tuesday night and again early Wednesday morning, both times washing myself first with my usual soap (high-quality artisan soap, made by a friend, I might add!) and then slathering myself up with an antiseptic soap. And I slept in fresh pajamas on fresh sheets. Next to a fresh woman. For about four hours.

SURGERY DAY

Surgery was scheduled for 8am; we needed to be at the hospital (about a 20-minute drive for us) at 6am. Which is why (of course!) it started snowing—heavy—the night before. After maybe four hours of sleep, we got up at 4:15am. I shoveled a path through six inches of heavy snow from our front door out to the car, cleaned the car off, and then took my second shower—and put on fresh clean clothes. By 5:30am we were in the car, and I was squeaky clean. A little nervous, a little tired, and mainly just ready for my prostate to be history.

Assuming we got there. It was still snowing, and even the interstate was sketchy that early. We passed several cars slid off the road on our way. Margaret drove with extra care as I silently willed her to drive faster lest we be late. We got parked and checked in by 6:15am and after a short wait I was taken back for my first round of prep. We were reassured that Margaret could join me once I was gowned, and then she could wait with me until I headed off to the operating room.

I had my vitals checked and then changed into my gown and a pair of those always ill-fitting non-slip socks. I was given three hospital bracelets: one for my name, one listing my medical allergies, and one designating me as a “fall risk.” This last was not due to any Mardi Gras celebrating the night before but because of the anesthesia I was about to be hit with it. Once the IV line was placed, Margaret came back by 7:20am to chill with me.

It was a bit like social hour in our little cube room. My prep nurse chatted with us. The anesthesiologist stopped by to explain his part (basically to review my file and then supervise the nurse-anesthesiologist who would actually put me to sleep). And my urologist-surgeon came in to say hello. Everyone we interacted with at the hospital made a point of treating me like a person, which was calming and reassuring. As 8am approached there were still no nerves. Just a readiness to do this thing so I’d be on the far side of it.

As 8am sharp, the nurse-anesthesiologist came by with an OR nurse to take me away. Margaret and I said our sweet farewells, I surrendered my eyeglasses, and I wandered wide-eyed but barely seeing down the hallway and into the operating room. The last two things I remember are the nurse asking me to moon her and the nurse-anesthesiologist telling me to relax. I complied with both requests. (To be fair, the nurse actually just asked me to back up to the table and untie my gown before sitting down, but we both knew that was code for “Moon me,” which is exactly how it played out.) If the nurse-anesthesiologist asked me to count backwards from anything, I expect I did that, too. But from the moment he told me to relax, I was gone—until 2pm. By which time all the exciting stuff was over.

THE SURGERY ITSELF

The exciting stuff was a RALP: Robotic-Assisted Laparoscopic Prostatectomy using a DaVinci surgical robot. I missed all of it—except the searing pain in my gut afterwards. So, this next section is gleaned from the surgeon’s notes posted in MyChart and a couple other reputable sources. This all happened to me, but I experienced none of it.

Once I was asleep, the nurse-anesthesiologist intubated me (put a breathing tube down my throat). I was given a dose of antibiotics (to guard against any germs in the room making their way into my insides). And I was positioned on my back as needed for the robot to engage. Then someone called, “Timeout.” Seriously, not because anyone was misbehaving, but because that’s what they do in an OR before making the first cut. They made sure everyone agreed I was me, and they were there to remove my prostate, and everyone’s role was thus and thus. Basically, they go through a very specific checklist, which might seem a little over-dramatic, but had I woken up with my gall bladder missing … well, that’s what the timeout is for.

At 8:39am I was cut open. The first small slit was above my belly button; it went through the skin and allowed a Veress needle to be inserted into my abdominal cavity. That’s sort of a 5-inch version of the type of needle used to inflate a basketball, but this one is shielded inside a protective tube until it’s inside me. Then it was used to inflate me like a basketball (with CO2) turning my abdominal cavity into a mini-inflatable dome, literally raised up so that the light, camera, and robotic tools would have room to maneuver.

After I was inflated, the needle was removed, and a “trocar” was pushed through in its place. A trocar is a rigid hollow tube about 8 inches long and somewhere between the diameter of a pencil and a dime—fitted with a point like an awl. It can take quite a hard push to get it through the underlying abdominal wall. I’ve watched videos; imagine pushing an awl (or a lawn dart!) through a chicken breast. Oof. Anyway, once it was in place, the inner point was removed, leaving just a hollow tube—a port—through which the robot light and camera were inserted.

Then four more slits, also small were made; two on the left side, two on the right side of the first one. Each of those got the “trocar push” until those points, too, pierced my abdominal wall in four other places. Yeah. No wonder each of those five puncture holes is still tender. Each trocar then had its inner point withdrawn, leaving four more ports. Each port was a hollow tube large enough to slide a pencil through, with a flat “cuff” at the top (used to connect to the robot). Next, as my surgeon put it, “The robot was then docked.” Basically, that means the DaVinci robot was rolled over to my body and lined up above the ports. Each of the robot’s four arms—a camera and three surgical tools)—was attached to one of the ports so its tool could enter me through the port. (The “assistant port” is for manual use during surgery; I think to irrigate with saline and drain away blood as needed.) The ports held the robotic arms secure, and the surgeon, seated at a console that would be right at a home in a video game arcade, guided the robot. The robot provides the camera feed and allows for ultra-fine motor movement inside me, but the magic rests with the surgeon, whose hands at the console move the tools. His (or her) skill provides the magic.

Cue up a moment of ominous, expectant music followed quickly by something more like Fantasia. Because from here on, for the next two-plus hours my gut was a frenzy of activity, and those ports protruding from my belly were twisted this way and that as the robot tools did their work.

I got a summary of it in MyChart, most of which is in big words than even I would need to look up. So, this is only offer a very basic sketch. My bladder was peeled away from the abdominal wall. Working in tandem, a knife and an electrocautery tool (which uses electric current to cut-and-cauterize), cut and cleared away tissue around my prostate, seminal vesicles, and the associated nerve bundles. The prostate itself was excised from the bladder neck “with care not to damage the ureteral orifices” (thank you!) while also trying to spare part of the right-side neuro-vascular bundle (again, thank you!). And then “the urethra was transected sharply (ouch!) to completely free the prostate.” Both lymph nodes were cut away using electrocautery and these, along with the prostate, were placed in “an endocatch bag” to be removed at the very end of the surgery.

Finally, the most delicate bit of magic involved repairing my urethra. Delicate because the moment that knife cut my prostate free (taking with it the length of urethra running directly through it), the now loose end of my urethra went scurrying back toward my penis where the rest of it was trembling in fear. (You would, too, if you’d just been “transected sharply” by a robotic knife!) And look, there’s a lot of anatomical nooks and crannies in there. So, yeah, my urethra took cover.

Thankfully, my surgeon, using a technique I shall christen “woo-u,” managed to draw my urethra, wounded in more than mere pride, back out into the open. Then, using a pair of gentle(?) robotic forceps, he deftly brought it up to the bladder neck—that is, he stretched it across the 1–2-inch gap of now missing urethra—and sutured it securely into place at the bottom of the bladder using a “V-lock suture.” (Think a tiny thread-thin bit of barbed wire; no knots needed since the tiny barbs keep the thread from sliding backwards. Still, yikes.)

After this, a catheter was inserted from the great beyond (unfortunately not using one of those five just-created “ports” but using my own built-in port: my penis). Catheters go in by traveling the very wrong way up your urethra. Alas, this tender tube is designed for one way traffic: out. It’s sometimes medically necessary to go in the other direction, but I’ve had this done several times while wide awake on account of kidney stones. It is not my favorite pastime! I am so glad I was asleep for this. Throughout surgery, the nurse anesthesiologist was my best friend.

With the catheter set in place, a small balloon about the size of a plump green grape and positioned at the inner end of the catheter tube (thus, just inside my bladder) was filled with about a Tablespoon of water. That little balloon holds the catheter in place so it can drain my bladder for the nine days it will take for my severed urethra to make fast friends with the neck of my bladder, held secure by those barbed sutures. Saline solution was injected into my bladder to determine if it the repair was urine-worthy. The surgeon’s summary reports it all too dryly: “The vesicourethral anastomosis was noted to be watertight.” I’m pretty sure the entire OR team let out a cheer like they’d just landed a rocket on the moon. I know I would’ve.

Finishing up, they placed about a twelve-inch drain tube across the “work area” (that is, my gut, right to left), exiting the port farthest to my left side to drain off any bleeding after surgery. All the robot arms were withdrawn, one of them bringing with it the endocatch bag containing my prostate (a bit larger than a walnut), lymph nodes, and other manly bits out through the center port, which was cut wider here at the end so everything could fit through. The ports were removed, leaving just four puncture holes(!) and one 2-inch slit above my belly button. That was stitched up a bit with a dissolving suture, and then “skin glue” was used to seal everything up. Who knew?

It all sounds like a great show for anyone with a ticket. Odds are it saved my life. Still, I’m glad I slept straight through.

The last note in the surgeon’s summary read: “At the completion of the procedure, all surgical counts were correct.” In other words, all specimens, tools, supplies, and persons accounted for. Nothing was missing! Whew.

POST-SURGERY

At 10:59 surgery was concluded. Sometime after that I was awakened, extubated, and wheeled into recovery. But don’t ask me when, because I remember nothing until around 2pm when I found myself in room 2218, greeted warmly by Margaret, my cousin Katie, and her husband Byron. (They’d taken the day off to be with Margaret while I was in surgery.) Everyone was happy to see me. But I was so tired, I could’ve cared less who was there. Okay, of course I was happy to see them all. But I have never been so entirely exhausted in my life. Four hours of sleep the night before. And even though I was “sound asleep” during surgery, you just heard what my body went through while I was out—that’s NOT a restful sleep!

Physically and emotionally, I was spent. And sore. And tender. Every tiny movement in my bed sent shivers of pain racing from my abdomen to the far walls of my room and ricocheting back to me. I’m pretty sure I made some small talk—I’d like to say I was my usual gracious and eloquent self—but I’m not sure that’s accurate. Despite my best efforts to be hospitable to my guests I was groggy all afternoon. I rallied for a short stretch of time, from 6-7pm, if it’s fair to say that less-slurred speech and more energetic wincing counts as a rally. But then I gave up and told them I’d had about as much fun as one person could have in one day and I just needed to rest.

And I did. Though not very well. But that’s next time.

*******

David Weiss is a theologian, writer, poet and hymnist, “writing into the whirlwind” of contemporary challenges, joys, and sorrows around climate crisis, sexuality, justice, peace, and family. Reach him at drw59mn@gmail.com. Read more at www.davidrweiss.com where he blogs under the theme, “Full Frontal Faith: Erring on the Edge of Honest.” Support him in Writing into the Whirlwind atwww.patreon.com/fullfrontalfaith.

NOTE: this is part of an ongoing series of posts about my journey with prostate cancer. So far the posts include:
1. January 30: “When Cancer Comes Calling”
2. February 16 – “Waiting in Mutual Ambush”
3. March 11 – “My Prostate is History” (on the surgery)
4. March 13 – “Letters Before Surgery” (saying goodbyes)
5. March 14 – “Cancer Prognosis: Uncertain Grace”
6. March 22 – “Post-Surgery Incontinence”

When Cancer Comes Calling
David R. Weiss – January 30, 2025

This is one of those pieces that I never wanted to write. One of those pieces you never wanted to read. But here we are. So, please, sit with me for a quiet moment. You’ll each have your own (and legitimate) feelings in response to my words here. But for this moment, just sit with me.

On January 16 I learned that I have prostate cancer—and that the cancer is pervasive and aggressive. This is heavy and hard news. For me. For Margaret. For my children. And, of course, for others in my family and in my circle of friends. Still, as I collect my words to share this news, I am filled foremost with gratitude and an apprehensive peace.

I’ll explain each of these carefully chosen words, but first let me recount the rather short path to this day. One quick caveat. I’m writing not a medical doctor, nor as a medical educator. I’m sharing my best understanding of my situation—and I mean to be as medically accurate as possible. But I’m writing from inside my experience as a (brand new) person-with-cancer. My learning curve—and my feeling curve—is likely to be steep.

[This is a LONG post—about 5000 words. If you prefer to read it offline, you can download it as a pdf.]

My path began on October 2, 2024. That’s the day the bloodwork at my general physical showed a skyrocketing PSA score.

PSA stands for prostate specific antigen. It’s a protein made by prostate cells that ends up circulating in your blood, where its level can be easily and precisely measured. That’s your PSA score. A “normal” score can range from 1.0 ng/mL (nanogram/milliliter) to around 4.0 ng/mL. But “normal” is slippery, because PSA scores typically rise slightly with age—and because there’s no direct causation between a higher PSA score and cancer. So, a PSA of 2.5 is considered high enough to warrant follow-up testing and/or biopsy if you’re under 50, while a score of 4.5 is still considered within the “normal” range if you’re over 60, and a score as high as 6.0 is “normal” if you’re over 70.

Prior to this past October I never much worried about prostate cancer. True, both of my twin uncles on my dad’s side have had prostate cancer (one at age 58; the other at 63). Both had their prostate surgically removed and were cancer free as they turned 70 later this month. I just turned 65, and I’ve never had any symptoms that would cause concern. No difficulty peeing, no blood in my urine, no frequent night-time trips to the toilet, no erectile dysfunction. (Well, no erectile dysfunction other than Peyronie’s Disease, which is its own little joy, but not related to my prostate. That story is told here.) There was nothing that would have caused me to worry—or to anticipate a high PSA score.

I’m pretty sure I’ve had my PSA checked at every general physical since I turned 50—usually every 2-3 years. In the twelve years prior to this fall, over six physicals, my PSA score had always fallen within the normal range. Always between 1.5 and 2.5, until 2021 when it came in at 4.24. But by then I was 62 years old, so my score still just below the upper edge of normal (4.5) for a man 60 or older.

So, I was stunned when I opened my test results in MyChart and saw a PSA score of 21.0 ng/mL. My scores over the past twelve years look like this: 2.1, 1.5, 1.8, 2.0, 2.5, 4.24, and 21.0. Make that into a graph and skyrocketed is not hyperbole. My primary care physician assured me that while my PSA was “quite elevated,” it did not automatically mean that I have cancer (there is no direct causation), but it did merit further evaluation. And he put in a referral for me to see a urologist.

A quick internet search added this fascinating tidbit about correlation. Prostate cancer is very rare in people with PSA scores below 4. If your PSA is between 4 and 10, there’s a 25% chance that cancer is present. If your PSA scores is over 10, your cancer risk is at 50%. And none of the sources I looked at went higher than that. A score over 10 was bad news. My score was 21.

I looked at the list of urologists in my network and in my geographical area—and picked a doctor who seemed old enough to be “experienced” and young enough to be “up to date”—he’d finished medical school in 2012 and completed his residency in urology in 2018. I called for an appointment and discovered it would be months before he had an opening. I took the first available appointment (for January 7), even though it meant a 45-minute drive; the first opening at his nearer clinic (just a 20-minute drive) wasn’t until February.

Thankfully, his office called in early November and told me that because of a cancellation he could see me virtually on November 21, if that worked. I made it work. At that initial consultation, he explained (as I had already learned) that a PSA of 10 indicated a 50% chance of having cancer, and that a score 21.0 made it overwhelmingly likely (but not certain) that I had prostate cancer. He also said that because I have no common symptoms of an enlarged prostate (like needing to pee during the night), which is also correlated with high PSA scores, the odds of my PSA score indicating cancer are even a bit higher—but still not certain. Finally, he added, on the plus side, that if I do have cancer, the fact that I’m symptom-free right now would suggest it’s in the very early stages.

He recommended the next step as an MRI of the prostate, which would provide him with a very accurate image of the size and health of my prostate. It would pinpoint any lesions (unusual cells, including pre-cancerous changes in the tissue) as well as any suspicious spots (tumors) that require a biopsy. He said, quite frankly, that given my PSA score, he expected to find something to biopsy. But he assured me the benefit of the MRI would be to give him a very complete picture, so he’d know exactly what and where he needs to go for a biopsy.

When I shared the news from my consultation with Margaret, my dad, and my sisters, I summed it up like this: Bottom line: I might-maybe-probably(?) have prostate cancer, but it’s typically very slow-progressing, and mine (if it’s even there) is probably in the early stages, so right now, until the MRI, it’s fair to just breathe deeply and stay calm.

Now, I know it’s neither slow-progressing nor in the very early stages, but those deep breaths and that choice to remain calm (as best I could) are still probably the best practice I could get for what’s needed in the days ahead.

I called right after that November 21 consultation to schedule an MRI. Although there are several MRI imaging machines in the Twin Cities areas, my urologist recommended I set an appointment at the University of Minnesota MRI center because they have the strongest MRI magnet in the area, which provides the clearest image possible. I got the earliest appointment I could: Sunday, December 29, at 7am.

Sidenote of fierce irony. Back in late September, just a week before my skyrocketing PSA score lit up my sky, and two months before making the MRI appointment, I’d volunteered to plan and lead the Sunday service at my Unitarian Universalist congregation also on December 29. My chosen theme: “Ending the year on edge: finding presence in liminal moments.” Sure enough, both in planning that service in mid-December and in leading it—just hours after the MRI itself, and after seeing the results of it pop up in My Chart—I was indeed ending MY year on edge and doing my best to find presence in liminal moments.

About an hour before heading off to lead that service, I scanned the test results in MyChart. The MRI showed two lesions (clumps of abnormal tissue—maybe cancerous, maybe merely odd). On first glance, I didn’t understand everything in the test report—and my follow-up consultation with my urologist wouldn’t happen until January7—but it wasn’t hard to tell that overall it was not good news.

The two lesions were “graded” by the MRI doctor on a scale of 1-5, using an internationally accepted standard called PIRADS (Prostate Imaging Reporting And Data System). This grading system seeks to ensure a consistent “best practices” approach to diagnosis and treatment in prostate cancer. PIRADS grades run from P-1 (clinically significant cancer is highly unlikely to be present) to P-2 (clinically significant cancer is unlikely to be present) to P-3 (the presence of clinically significant cancer is equivocal) to P-4: (clinically significant cancer is likely to be present to P-5 (clinically significant cancer is highly likely to be present).

The smaller lesion on my prostate was graded PIRADS 4. The larger lesion was graded PIRADS 5. Well, shit. Not only did this mean clinically significant cancer was highly likely to be present (90%), it was a grade “highly suggestive of aggressive prostate cancer.” Definitely on edge. The thin silver lining: I figured (correctly) that a PIRADS 5 grade would probably get me a “go-to-the-head-of-the-line” card for a biopsy. And then Margaret and I headed off to church to co-lead that liminal Sunday service.

Later that evening I asked her to come sit by me on the love seat in our family. I hadn’t told her that I’d seen results already that morning. She was already “on edge” enough to be well-qualified to be my assistant service leader that day, and I thought one of us (me!) reeling a bit inside was plenty. But at the end of a busy hectic day, we sat side-by-side and read through the test results together. Heavy and hard.

Besides the PIRADS 5, we read “there is high suspicion of extraprostatic extension (EPE) with possible involvement of the neurovascular bundle”—which meant that it appeared the larger lesion had grown beyond the prostate itself into surrounding soft tissue. Only suspected at this point, but EPE is one indicator of “high risk” prostate cancer because it’s related to both a higher likelihood of recurrence after treatment and an increased risk of metastasis (which is the worst-case scenario for prostate cancer—when it sets off on its own into other parts of the body). Plus, if it was indeed “involved” with the neurovascular bundle, any successful treatment would have an increased chance to undercut both my continence and my sexual function. HEAVY. AND HARD.

We knew we didn’t understand everything. We knew we understood enough to know the next nine days (until the follow-up consultation) were going to feel LONG. Sometimes liminal moments happen in the blink of an eye; this one spanned more than a week.

On January 1, I “celebrated” by the new year by sharing what I knew from the MRI with my kids, my sisters, my dad, and two couples that Margaret and I are very close to. We didn’t know enough to feel it was time to share it more widely, but we knew enough to know we didn’t want to move through the next few long days entirely on our own.

We met together with the urologist on January 7. He confirmed everything we had gathered when we first reviewed the test results. Nothing was certain yet. The MRI provides images, but it’s not yet as conclusive as a biopsy. But there was a tone of urgency in my urologist’s voice. During our meeting, he checked his schedule, found he had an open slot just three days later—on January 10—and penciled me in for a biopsy that day then and there. His office called to officially confirm the appointment within 30 minutes after we ended the consultation.

Another aside. December 29 was a FULL day. Besides the 7am MRI and the Sunday service at 12:30pm, smack in the middle of that service, 450 miles away in Indiana, my dad (88) went SMACK. Just after having stood up from his easy chair, he lost his balance and fell backward onto the floor in his living room, cracking his head hard on a wooden closet door on his way to the carpet. He didn’t actually “crack” his head; but he did actually crack—fracture—his neck. That’s a whole other saga. Suffice to say he needed surgery to fuse the cracked vertebra between two stable ones, spent over two weeks in the hospital, and is now at a rehabilitation center where he’s making slow but steady progress toward recovery. And hopefully toward returning to independent living in his own home.

Needless to say, it’s been a challenge navigating both my cancer journey and my dad’s neck fracture and recovery over the past month. Either one would’ve filled my plate. Together they stacked my plate HIGH. On January 10 I had my biopsy; the day after I drove eight hours to Indiana to spend most of the next four days with my dad at the hospital (and with my sisters, too). On January 15 I drove back to Minnesota so Margaret and I could meet with my urologist to review the biopsy results.

The biopsy was done right at my urologist’s clinic/office by him and two assistants. It’s a fairly simple procedure, called a transrectal prostate biopsy, which tells you just about everything you need to know. But let me tell you just a bit more. I’m in a slightly modified fetal position. After appropriate “preparations” (including local anesthetic) the doctor places a long rod about a finger’s length into my rectum; it features an ultrasound on the tip and a “needle guide” running alongside it, backed up by a “needle gun.” Once positioned, the doctor can “see” my prostate on an ultrasound monitor—and then pull up the MRI image from two weeks earlier and “fuse” that image with the ultrasound image. This lets him sample the prostate very precisely, making sure to draw samples from both lesions spotted on the MRI as well as from the rest of the normal prostate tissue.

To take samples he “fires” the needle gun, which sends a slender needle very quickly through the wall of my rectum into the prostate and just as quickly withdraws a tiny “core” sample. Each sample was about half an inch long and the diameter of a standard mechanical pencil lead. It was not nearly as uncomfortable as it sounds. He counted down, “three, two, one,” before firing the gun each time. Then there was a loud click, and I felt a momentary “poke-and-suction” sensation, over as quick as it started. Seventeen times.

Each time he called out the location that had been sampled, handing the core over to one of the assistants who labels it and prepares it to go off to pathology. Altogether the procedure itself only took about 15 minutes but it unlocked a whole new level of wide-awake vulnerability at the hands of my medical team. Afterwards the cores were sent off to a pathologist for careful analysis I went home and packed so I could drive to Indiana on Saturday.

The time in Indiana with my dad and sisters kept me focused on his needs, challenges, and recovery, as well as building support with my sisters to plan for his ongoing care and return home. Of course, those pending biopsy results were in the back of my mind the whole time, but the front of my mind was well-occupied—at least until Tuesday night.

That’s when the pathology report appeared on MyChart. With cancer written all over it. Well, just on the left side, but all over the left side. Wednesday morning I headed back to Minnesota and that evening I had another quiet sobering moment with Margaret, once again, not understanding everything we knew, but knowing that we knew enough to know my life—our life—was about to change. We made love before going to bed, not out of desperation or fear, but with tender fierce intimacy. We were still on edge, but lovemaking is its own liminal moment, and whatever was coming our way, we were going to meet it with all the strength of our love. “Undaunted” would be a foolish word to employ in the face of so much uncertainty. Determined says it better. We fell asleep that night determined.

On Thursday morning, January 16, we had a virtual consultation with my urologist to review the pathology report. This is where “pervasive and aggressive” come into play.

Of the 17 core samples, every one of the eight taken on the right side of my prostate, including the two from the smaller lesion, came back benign. There is no cancer there. Unfortunately, all nine cores from the left side—three from the larger lesion and six from the rest of the left side of the prostate all came back as cancerous. In each sample, the percentage of cancerous cells ranged from 70%-90%. So, pervasive. The cancer is not limited to the larger lesion; indeed, there appears to be no corner of the left side that has not been taken over quite thoroughly by cancerous cells. Pervasive.

Each core is given a Gleason Score by the pathologist: a measure of just how abnormal the cells in the sample are. Cell abnormality is directly correlated with uncontrolled growth: aggressiveness. Gleason scores range from 2-10, with higher scores meaning more aggressive cancer. The Gleason scores for the nine cores taken from my left side are: 7, 7, 7, 8, 9, 9, 9, 9, 9. No 10s, but a boatload of 9s. Aggressive.

The cores are also given a Gleason Grade, which is sort of a “weighted score” to help guide treatment plans. Scores from 2-6 equal Grade 1 and are often treated by “active surveillance” (careful monitoring) as they reflect slow-growing cancers. Scores of 7 equal Grade 2 or 3; they’re considered “intermediate grade” cancers and might be treated with targeted radiation. Scores of 8 equal Grade 4, and Scores of 9-10 equal Grade 5. Both of these grades are considered “high grade” / “high risk” cancer; they’re the fastest growing and the most likely to metastasize (to spread to other organs or areas in the body).

Men with Grade 5 prostrate cancer have the least favorable outcomes. Thus, heavy and hard.

My urologist explained that for “high grade” cancer, radiation isn’t typically a good initial treatment option. Given the risk of metastasis (of which there is NO evidence—as yet) radiation isn’t quick enough, and it can make follow-up surgery more difficult. So, his strong recommendation is for a radical prostatectomy (the complete removal of my prostate). He believes it offers me the best prognosis, although “best” is a complicated word here.

We have already scheduled that surgery for Wednesday, March 5, at 8 a.m. (at Southdale Hospital in Edina). Why not sooner? Because, umm, my rectum was recently punctured seventeen times, and it’s not wise to do surgery right next to a rectum until it’s had 6-8 weeks to heal. My urologist will do the surgery himself. Well, him and a da Vinci robot. I’ll write more about that in a future post. I’ll be in the hospital just one night.

What is “best” prognosis for “least favorable” outcomes? Turns out there’s an app for that. Right there during the virtual consultation my urologist shared his screen, entered my PSA score and punched in the Gleason scores from my biopsy. I think this was the moment we both felt a real pit in our stomachs. Even with my prostate (and all its cancer) gone, I’ll have a 60% chance of making it (15 years) to my 80th birthday. But, because Grade 5 prostate cancer is pernicious, even with total removal, there’s an 83% chance that cancer cells “shed” prior to removal will eventually spark a recurrence of cancer somewhere else in my body within 5 years. A 90% chance this will happen within 10 years. HEAVY. HARD.

This is called micrometastatic disease. These are tiny bundles of cancerous prostate cells, too small and too few to be picked up by even the best imaging. Not yet tumors, they can move silently through the body. Some of them simply die; but others can eventually form tumors that can attach themselves anywhere else in the body—usually somewhere from the pelvis up to the brain. The only “good” thing about them is that, as prostate cells, they carry the same protein that shows up in a PSA score. Post-surgery, with ZERO prostate in my body, my PSA score should be ZERO. By carefully monitoring my PSA in the months and years after surgery, we should be able to know quickly if and when any micrometastatic disease reaches a threshold of detection, and then use a PET scan to locate where it is and target it while it’s still young with radiation.

Two last words about the surgery. In removing the entire prostate, I’ll lose 1-2 inches of my urethra (it runs right through the prostate). The urologist will stitch the two ends together, but (oh joy) I will go home with a catheter for nine days while my urethra heals. I’ve had catheters before on account of kidney stones. Not my favorite medical accessory. Ah, well. We’ve already scheduled its removal on March 14. Besides that tiny bit of urethra, I’ll also lose all of my “neurovascular bundle” on the left side, and it’s possible that its partner bundle on the right, will be slightly damaged as the prostate is carefully pried away from it. That bundle of nerves and blood vessels is what orchestrates continence (your ability to hold your pee) and erections. I will almost surely face a couple months of incontinence, although there are both cognitive and physical exercises that should help me regain most if not all of my continence within a year or so. Regarding the other loss, as my urologist put it, although there are medications and other things that can offer assistance, “the truth is that the best erections of your life are definitely in your past.” HEAVY. And not so hard anymore.

Thankfully(?), my fifteen-year experience with Peyronie’s Disease (which bends my penis—but only during erections—whose thought that was a good idea?!) has “invited” me and Margaret to find means of physical intimacy even when all the parts don’t work the way they originally did. Been there. Done that. Still, heavy.

In fact, it was all so much heaviness that Margaret and I both missed the potentially heaviest piece of it all. We ended the consultation with all our questions answered, a surgery date set, and some hardly devastating but certainly sobering odds in front of us. I’d also been instructed to make an appointment for a pre-operative physical with my primary care physician, just to make sure I was healthy enough for surgery. No concerns there. And a referral for a “Eyes to Thighs” PSMA PET/CT scan to confirm I was “all clear” for surgery. Nothing of concern there either. Or was there?

Someone from the U/M hospital called right away on Thursday morning, and I scheduled the scan for January 27. It wasn’t until several days later, as I was watching a learning video about robot-assisted radical prostatectomy that something clicked. “If your cancer has metastasized you are not a candidate for a radical prostatectomy, and if, even mid-surgery, the surgeon notices evidence of metastasis, your surgery will be ended without removing the prostate and other treatment options considered.” Wait … what?

After a burst of internet research and an exchange of messages with my urologist via MyChart, the full heaviness of this scan set in. Because my PSA score was so high and because my biopsies revealed a cancer that was so high grade—aggressive—there was an unfortunate but very real possibility that it had already “left the barn” and spread to other places in my body. The MRI had shown no evidence of this, but the MRI had only looked at my prostate and the immediately area around it in my pelvis. Grade 5 prostate cancers are known to bolt out of the pelvis for greener pastures anywhere between the “eyes and the thighs.” Hence, the nickname for this scan.

The CT part of it uses a contrast dye administered through an IV to make organs more distinctly visible; it “maps” my internal anatomy. Then the PET part uses a radioactive agent, also given by IV and allowed to circulate in the body for an hour, to track down and “light up” any prostate cells … anywhere between the eyes and the thighs. It’s the same scan that would be used to locate any recurrent cancer in the future.

It was being done now, before my surgery, because if it showed any metastasized cancer between my eyes and thighs, the just-scheduled surgery would be canceled, and we would move to plan B treatment options. There are plan B options for metastasized prostate cancer, but their odds make a 60% chance of making it another 15 years look positively rosy. I realized this on Thursday, January 23, a full after the last post-biopsy consultation, and four days before the scan itself. It twisted inside me uncomfortably for the first 24 hours. I wasn’t scared, per se. But I was very much alone, because no one but me and my doctor knew the full stakes of the upcoming scan.

Friday night I sat down with Margaret for a third time to tell her what I had realized—and what my urologist had confirmed. If the scan found any metastasized cancer it was a whole new ballgame. No surgery. And even with the best remaining treatment options on the table, my odds of making it through the next five years, to reach my seventieth birthday, would plummet to 34%. We sat in silence for a while. HEAVY. HARD.

And we entered the weekend, sharing this most liminal awareness with just four people, the two couples we’ve made our closest companions on this journey. By Monday night, it might become no big deal. And if it did alter everything, we’d share that news only once it was certain. No reason to drag any of our family onto a 4-day roller coaster ride from hell.

Monday’s scan was easy. Two passes through a big metal hoop, once to capture anatomical images of my body and a second pass to listen intently for any radioactive echoes of prostate cells anywhere between my eyes and thighs. Echoes that would sound an awful lot like Agent Smith from the Matrix. “You hear that, Mr. Weiss? That is the sound of inevitability―it is the sound of your death.” I heard nothing., of course. The machine did all the listening. And, thankfully, it heard nothing either.

There is now (doubly confirmed, by MRI and by PET) zero evidence of metastasis beyond my prostate. Some possible suggestion of spread to an adjoining lymph node, but nothing that has moved past there. And that node will be cleanly removed along with the prostate. So, I should be “cancer-free” by noon on March 5. (Which more honestly means that any remaining cancerous cells in my body will be undetectable—too few and too far flung to register at all.) Post-surgery, my PSA will be watched … closely. I’ll still be at high risk for recurrence down the road (that’s the “gift bag” that Grade 5 prostate cancer comes with), but as noted above, the moment my PSA score registers at all, my care team can go into action to figure out where those rogue cells are and deal with them.

Suddenly (by 5pm Monday evening, just a few hours after the PET scan, when the results showed up in MyChart), a 60% chance of reaching 80 and some (hopefully temporary) incontinence and some (hopefully creatively managed) erectile dysfunction ED seemed like a pretty decent deal … given the other option! Perspective is everything.

And truly, perspective is everything. I am thankful, of course. And yet, having now joined the fraternity of those with prostate cancer, every thankful moment like this is also bittersweet. It comes with the recognition that my having dodged those odds means someone else did not.

Finally, I come to those last few words: “gratitude” and “apprehensive peace.”

Gratitude because Margaret is the best partner-companion-friend-lover-spouse I could have asked for. And I know she will be right at my side throughout this. And because I have the best circle of family and friends. I am least of all alone. And as I face this, I am filled with boundless gratitude for all of you.

Apprehensive because it seems like “cancer-free” will not be a certainty—not even a realistic hope—ever again. And yet, despite that inevitable apprehension, I am at peace. Life is framed by death and made meaningful by purpose and love. My life abounds with purpose and is rich in love. I will surely, from this day forward, be more aware of the frame of death, which may come nearer to me at any moment now. But I will fill the days I have (and may they be many!) with purpose and love. And I will be glad to have you with me for each day that is mine to live.

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David Weiss is a theologian, writer, poet and hymnist, “writing into the whirlwind” of contemporary challenges, joys, and sorrows around climate crisis, sexuality, justice, peace, and family. Reach him at drw59mn@gmail.com. Read more at www.davidrweiss.com where he blogs under the theme, “Full Frontal Faith: Erring on the Edge of Honest.” Support him in Writing into the Whirlwind atwww.patreon.com/fullfrontalfaith.