Life and love after a radical prostatectomy

The whatchamacallit is a bitch, though

“I want to show you something.”

My surgeon, in a windbreaker with the Urologic Specialists logo, walked in to my hospital room on Saturday morning, April 21, looking at his phone.

“Wake up!”

It was 6:30.

“I’m up, I’m up,” I lied.

“How are you?”

He shook my left hand. I held his for a moment.

“Me? I have a catheter in me. How’s your day going? And how did everything go yesterday?”

“Good. No problems. It was big. Let me see if I can find it,” he said, returning to his phone.

He found it.

My prostate was on his phone.

The day before, he performed on me a radical robotic prostatectomy. (Translation: He removed my prostate). My marginally cancerous 169-gram prostate—a normal size is about 25 grams—was dislodged from my body through 5 tiny stiletto-style holes around my abdomen. His hands weren’t even inside of me; he worked the machine with the equivalent of joysticks.

I remember being wheeled out of recovery, seeing him, and waving. He smiled, waved back.

I remember thinking, “This is good. I’m alive.”

“You took a picture of it?” I asked.

“Take a look,” he said, showing it to me.

“It looks like a big, bruised, mean orange. Christ!”

“Largest one I’ve ever taken out.”

“Really?”

“Yep.”

“Wow! Do I get a trophy or something?”

Let me not bury the lede.

The cancer hadn’t spread, I’d find out after the pathology report came back, so there was no need for any kind of follow-up, no post-op radiation to kill rogue cancer cells, no removal of the bladder, and no trips to MD Anderson or the Mayo Clinic. I had beaten cancer, which is a horrid expression, as if I had done something or had some skill or resolve others hadn’t—as if, even if I had, it would be a good idea to gloat and mock the disease in some kind of post-op end-zone dance. The cancer, in fact, wasn’t as bad as he had first thought. It was a Grade 2 instead of Grade 4, which apparently is a big deal.

“So, we probably could have left it in, huh, since the cancer wasn’t so bad?” I asked.

“Don’t think like that,” he said. “It needed to come out. It was doing you no good. Besides, I’m not putting it back in.”

On January 2, 2017, my first urologist called to tell me that one of the 16 cores he had biopsied had come back 10 percent cancerous.

“That doesn’t seem so bad,” I remember telling him, just as I remember hearing, “Well, I’m not saying you need to start getting your affairs in order, though I always think that’s a good idea.”

“I already hate 2017,” said my girlfriend as I hung up the phone.

My old internist, before throwing himself off a balcony, did an ultrasound of my prostate four times a year for about four years before that. Sixteen ultrasounds and I still came down with cancer?

Early detection my ass.

This past January, another biopsy inexplicably revealed a smaller amount of cancer, but a more serious kind—it was now Grade 4 (Grade 5 is the worst).

“How is that even possible?” I asked my second urologist—this one, my surgeon.

“It’s probably just a slicing error.”

Good god.

About 165,000 men will be diagnosed with prostate cancer every year in America; about 30,000 will die—or, to put it another way, 135,000 won’t.

When you find out you have cancer, you have to keep finding out you have cancer. After I was diagnosed, I read testimonials online, talked to friends and old classmates who have or had prostate cancer. My reactions ranged from, “Oh, good, I’m going to be fine,” to, “Christ, I’m dead.”

Here were my options.

I could do nothing, which is what I did that first year, under a protocol called “active surveillance,” which primarily consisted of getting a blood test every few months to check my PSA, or prostate-specific antigen, the protein produced by normal, as well as malignant, cells of the prostate gland. Once cancer is discovered, urologists check for spiking in the PSA, which may indicate the cancer is getting hinky. May. Problem is, the PSA is a crude marker, for there is no agreed-upon “good” level, though 4.0 ng/ml is usually considered the outer limits of normal.

Many things, in fact, can cause the PSA to rise, including urinary tract infections, orgasms, and biopsies themselves. Mine was 4.5 before the initial biopsy, which probably wouldn’t have been enough to necessitate a biopsy, but the size of my prostate, as mentioned, was a conversation starter. The bigger the prostate, the greater room for cancer to run amok or hide. Large prostates also push down on the bladder, so urinating becomes difficult and unsatisfying, as the bladder, being constantly pestered by the weight and size of the prostate, never fully empties. Listen to an 11-year-old pee. It sounds like a race horse is in the bathroom. Listen to a man with a large prostate pee, and it sounds like someone is sending Morse code.

Having an elevated PSA doesn’t mean you have cancer; having a low PSA doesn’t mean you don’t. And even when cancer is detected in the prostate, there’s no guarantee it will grow, no indication of how long it’s been there, and no guarantee that by removing it you will live longer. Prostate cancer is slow-moving, so most men die with it rather than from it. My fear, during active surveillance, was we’d miss the actual day my cancer decided to take a stroll out of my prostate and into my lymph nodes.

I could have chosen, instead, over a nine-week period and five days a week, to have my prostate bombarded by external radiation, but I’d run the risk of cramping, diarrhea, bleeding, having skin the consistency of grilled salmon, and still have my hulking prostate inside of me. There was also something called brachytherapy, internal radiation, where 100 radioactive pellets would have been inserted into my prostate between my scrotum and anus—but then I’d need a new wardrobe.

RadGuard Lead-Lined Underwear

Prostate cancer patients who have had the brachytherapy radioactive seed implant procedure use this product to protect family and coworkers from radiation. It is especially recommended for brachytherapy patients who are surrounded by children and pregnant women.

Please be aware that because this is underwear, there are NO RETURNS.¹

So noted.

The more I thought about the leaner, meaner cancer in my XXXL prostate, the more I was convinced I didn’t want to keep watching and waiting for it to detonate, didn’t want to be disarmed by radiation, and didn’t want a prostate glowing inside my magic underwear, setting off alarms at airport security and clearing children from playgrounds—I wanted it out, separated from me, preferably sitting in a Petri dish in a lab somewhere.

The surgery was performed at Oklahoma Surgical Hospital, the old City of Faith. Hospital personnel still say “Have a blessed day” with alarming regularity. A nurse, immediately after the surgery, held a cold compress on my head for an inordinate amount of time.

“Sorry that took so long, “ she said, removing it. “I was praying for you.”

I didn’t feel like arguing. I was nauseated. She was sweet. Sweet won.

A hospitalist, which is a physician with no real knowledge of any patient (and maybe the worst idea in medicine since HMOs), came by after the surgery and asked how I was doing.

“Feel like I have to pee all the time,” I said, “but then I realize I am.”

“That’s because,” he said, “because of the, uh, the … uh … the whatchamacallit.”

“The whatchamacallit? You mean the catheter?”

“Yeah, yeah, that’s it.”

My surgeon said, “I’m not going to tell you I’m going to improve your sex life, but you’ll be okay.”

Even still, once your prostate is out, you get a series of exercises to control your bladder, which means you need pads for the accidents you’ll inevitably have. Someone has to buy you these pads, meaning someone who loves you has to buy them for you, meaning someone you don’t want seeing you like that sees you like that.

That morning, after the surgeon showed me my prostate on his phone, he also found and played for me Yes’s Rick Wakeman’s acceptance speech at the Rock and Roll Hall of Fame.

Wakeman was describing his prostate exam.

“You hear the rubber glove, you feel his fingers, which feel like a hamster inside you on holiday, and then doctor said, ‘Mr. Wakeman, there’s no need to be embarrassed. It’s not unusual to get an erection during this kind of procedure.’ I said, ‘I haven’t got an erection.’ Doctor said, ‘Yes, I know. But I have.’”

You want prostate jokes? I got prostate jokes.

I spent the following week in bed, mixing MiraLAX and Diet Dr. Pepper, eating Oreos and Utz Pretzels, watching the NBA playoffs, trying not to roll over onto my catheter, and thinking about aging, virility, and smaller penises.

Change in penis length. A small percentage of surgeries will result in a decrease in penis length.²

I missed my prostate. I grew a beard.

Weeks later, I’m waiting for a narrative to develop. Right now, just moments. These three in particular.

1) A waitress, probably in her mid-20s, smiled at me at a bar on my 61st birthday at the precise moment I was doing Kegel exercises to strengthen my pelvic floor muscles.

2) My father, who’s 91, visiting my sister in New York City, called to check on me a few days after surgery.

“How did it go?”

“Was okay. I’m going to live.”

“You know this is going to kill your sex life.”

“So I’ve heard.”

“Hey, did you get a chance to check my mail?”

“No. Been busy.”

“When you get a chance, okay?”

“Sure.”

3) Had lunch with a friend of mine who had had his cancerous prostate removed 20 years ago. But before he did, he asked his wife what she thought about the effect it would have on them, especially sexually, for there was no guarantee he’d ever have an erection again.

“It’s just f---ing,” she said, “and you’re my best friend, and I don’t want to lose my best friend.”

Let’s go with that.