After my prostatectomy in Oct 2017, I wrote the following email to my adult male friends over the age of 40. I hesitated to post it online as it's a bit graphic. But I've now shared it with over 100 people through email and figure the cat is out of the bag. So, I'm posting it here for others - on the nameless/faceless Internet - to read. I hope you find it helpful, whether you're just curious about prostate cancer, you've just learned about a cancer diagnosis or you're a survivor (in which case, some of this might resonate).
I’ve put a cap on my Movember 2017 experience with prostate cancer. It turned out to be a bigger thing than I originally expected – and is worthy of a retrospective.
My prostate cancer story starts with a pinched nerve. In July, I started having some unbearable pain in my back. My wife, Kathy, told me to see my doctor. I brushed her off (shouldn’t ever do that to my wife). Once the pain was joined by numbing of the third and fourth finger of my left hand, I figured pain had given way to weird…and it was time to consult an expert. While consulting my primary care physician about the pinched nerve, he poked me about my PSA score. Having switched PCP’s the year before, he hadn’t received my medical records until just recently and – being good at his job – he dug through those records before my visit. That’s when he noticed my PSA. It was running high (over 8)…why wasn’t I seeing a urologist about it?
He got all squirrely about the PSA score and I discounted his concern. After all, my score was running high for several years (4 to 5). Under protest, I heeded his recommendation and saw a urologist. The urologist happens to be my neighbor and I recently had helped his 11 year old son improve his baseball swing (increased his batting average from <.100 to over .500). It’s weird driving down the street and waving to the guy on the corner, knowing that he’s been checking out your plumbing – if you know what I mean. But he was good at his job and, after a few dances through the pathology lab with blood work, he convinced me to get a biopsy.
Biopsy is not fun experience. It’s a couple of mini T-rex jaws on the end of a long stick. They poke it where the sun don’t shine and grab 12 bits of your innards for testing. The procedure takes about 5 minutes, but feels like it leaves a bunch of thumbtacks behind. The feeling goes away in 2-3 days.
My prostate biopsy came back with a Gleason score of 3+4. The numbers all mean something, apparently. Having a 3+4 is better than a 4+3. Any number above 4 is big concern. And anything north of 5 is a “get your will in order” kind of diagnosis. The 3+4 meant that I was just beyond the line between watching it a few more years and doing something about it. After several meetings with different doctors (urologist, radio-oncologist, surgeon), I decided to get a prostatectomy. In no small part, my decision was based upon the answer each gave to the question…”if you were in my shoes, what would you do?” Even the radiation guy, who makes his money irradiating body parts, said he’d get surgery. Enough evidence for me.
So I scheduled the surgery for Oct 30. I checked into the hospital at 6AM and was prepped for surgery by a young nurse who graduated with my oldest son from high school. OK, that’ll make you feel old, if the whole prostate thing didn’t already. I was wheeled into the surgical suite where there were eight people in masks. In the corner was the robotic surgical unit. It looked exactly like the robot in the movie remake of “Lost in Space”, but covered in plastic. They kept me awake so I could get my butt off the gurney and onto the operating table. Then I was out…it took zero time to put me under. Next thing I remember it was 3PM and I was in a hospital room.
My most memorable sensation was the pain just above my belt line. I guess the surgery, while robotic and minimally invasive, did require pushing around lots of muscle and organs in my mid-section. So there was quite a bit of swelling. I wimped out at around 4PM and asked for something stronger than whatever I had been given for pain. They injected a tiny bit of morphine into my IV line. OK, I won’t lie…that was good. Big fan of morphine in the right circumstance.
Since I had no dietary restriction, Kathy brought me sushi for dinner in my hospital bed. It was from one of the really good sushi places in town and the contrast between the antiseptic hospital surroundings and the plate of deliciousness that sat in front of me wasn’t lost, even in my painkiller induced haze. I encouraged Kathy to leave after dinner as I really didn’t want her sitting in a chair watching me sleep.
I did sleep that night, but only in 1-2 hour segments. In between, I’d get up from bed, unplug the power plug from the IV dispenser unit and drag the rack on wheels down the hallway as I limped past the nurses station. Before each stroll, I think I remembered to either close the back of my gown or throw on a blanket like a cape …so I didn’t give the nurses a free show. Even though I had nurses messing with my junk all day – and didn’t seem to mind – I still maintained some modesty when it came to showing my butt in the hallway. Go figure.
The lab guy came at 5AM to draw the last blood of my stay. I seem to recall that he looked like the animated bad guy in Toy Story 2. Just as he left, Kathy sent me a text asking if I was awake. I thought she was just concerned. I told her I was up, so she called. She informed me that our hot water heater had died…leaking continuously out the rusted top. Not a good time for that, but OK. She did a video chat with me from the basement as I was sitting in the hospital recliner all wired up…and I guided her to turning off the gas. Then I got on the phone and started leaving messages for plumbers to call when they got in…as I needed an emergency install of a water heater.
Plumber after plumber said they couldn’t even come by the house for 2-3 weeks. Not a good thing post-surgery…I needed it that day (which, by the way, was Halloween). On my 5th or 6th call, I found an independent plumber that could get there mid morning. Good news, because at 7:30AM, the surgeon came in, checked out the incision sites and catheter and cleared me for discharge. I went through the exit routine with Nurse Ratchet (she was the least nice of the entire bunch) and was walking into my house at 9:30AM. The plumber showed up at 10AM. Long story short on the plumber…they had a tankless hot water heater in stock that met our specs and got it installed by mid-afternoon.
So I was bound to a catheter. After all the build-up from friends who had experienced the catheter thing, I was worried. No reason. It was much better than I thought. Don’t get me wrong…having something sticking out of that part of you is not the party in your pants you always dreamed about. But it was only a minor annoyance. Even the logistics of unstrapping the big-bag-in-a-bucket and strapping on a leg sack (what I always envisioned motorcyclists used on long rides) wasn’t that bad. It surprised me that the incision pain was so intense. But that went away in a few days. My urologist warned me about our 95 pound black lab…don’t let Zeus entangle himself in the tube or he’ll pull out the catheter at great harm to my bladder. For the record, Zeus was an angel throughout.
Here’s where things get a little gory…so I wouldn’t blame you for skipping this next 3 paragraphs. Fair warning…
The catheter was fine for 6 days. I kept everything clean as they instructed and lubed up to keep from unnecessary irritation. On day 6, I was sitting on the couch for an extended period and got up to empty my piss bag. I noticed, when I got into the bathroom, that the catheter tube was sticking out about an inch further than before. Crap, the Velcro strap that held the catheter in position had slipped down my thigh and pulled it out. Thanks to doctors warnings, I was fully aware of the plumbing components installed in my bladder and piping. There was an inflated bulb inside the bladder meant to keep the whole catheter in place (I think that’s what makes it a “Foley” catheter). The doctor warned me about pulling on that. In his time as a surgeon, only one patient (of hundreds) had stepped on his pee tube and yanked it out of the bladder. He told me it was ugly, including emergency surgery and a bunch of other stuff I wanted to avoid. I was pretty sure I hadn’t gotten to that extreme point, but I was worried I did some damage.
To support my theory about the damage, my pee turned into what looked like a fine Cabernet Sauvignon. And, here’s a nice visual…dozens of blood clots started to show in the bag. It got me on the phone with the nurse right away. She gave me instructions on resetting the catheter – involving lube, clean hands and a very weird sensation. But it worked and I had everything back where it belonged. She told me to start drinking like a fish and I did. Every hour, another 12 oz of fluids.
It was at this point that I understood all the horror stories about the Foley catheter. It’s the moment when the bladder spasms began. Eesh. The best way to describe bladder spasms is to recall the worst pee you ever had to take. You drank a half gallon of iced tea and held the pee on a long drive because you were late for an appointment. Difference is, at the end of your drive, you hit the rest room and get relief. With a bladder spasm, the feeling of painful urgency remains. All freakin’ day. Never stops, never subsides. And, you may want to skip reading this sentence…in the middle of all this, I started bleeding around the outside of the catheter. I had that wonderful feeling for 3 straight days…until the catheter was removed. It got so bad that I opted for doses of the hydrocodone once each day, just to get 3 hours of relieving bliss.
That should be the end of the gory stuff…sorry ‘bout that.
Over the final three days of recuperation, Kathy was in Florida with friends. I was glad. She couldn’t have helped with any of the pain and only would be constantly asking how I’m doing. It gets tiring finding different ways to say “I would scream in pain if I could” in language that sounds more like “doing fine, thanks”. To pass the time, I decided to go through all of my 35mm slides…2500 of them from our early marriage. I culled out 2000 crappy photos with bad coloring, blur, or images of the ground and scanned the remaining 500 on a digital scanner I purchased from Amazon a few days after returning home from the hospital. It was a great diversion and one I’d recommend to any 50+ year old man getting his prostate removed.
Finally, the day of catheter removal arrived. It was 9 days since it was put in. Kathy had purchased some man-diapers to take with me to the doctor’s office. Gotta admit, they looked a lot more like my normal underwear than I imagined. Except the padding in front made me look – let’s say “more popular”. As Kathy had one more day in Florida, I had a friend take me to the office.
The doctor came in and had me change into one of the diapers. I hopped up on the examination table, dropped my diaper, and he said this sentence…”I’m not going to warn you, I’m just going to pull it out.” And, right about where the comma sat in that sentence, he pulled. By the time he was done talking, it was over. Less than a second and not nearly as painful as it would have been, had he warned me. I pulled up my diaper and got dressed. He proceeded to explain the pathology of my prostate to me.
The results confirmed what the biopsy had said. Gleason, once again, came out a 3+4. Cancer cells were right where the biopsy said they’d be. The one “but” in the lab report was that they found (literally) a few cancer cells trying to climb the prison wall at the edge of my prostate. Apparently, that’s how prostate cancer kills guys. The cells jump out of the prostate and start latching on to other body parts, killing them one by one. If a prison break happens, the options for treatment get more difficult and aggressive. And the chance of survival drops precipitously. My prostate border wall was intact and there was no evidence of a prison break.
I asked the doctor the obvious question…”if I hadn’t removed the prostate, how much longer before the cells would have succeeded at crossing the border and metastasizing?” His answer…somewhere between 6 months and a few years. Translation – I might have been dead before I met my first grandkid. Back to my primary care physician…his medical paranoia saved my life. So I sent his office a Man Crate (http://www.mancrate.com is a great gift site…check it out).
The last coaching I got from the doctor (in early December) was about incontinence. He said that the surgery went great and he was able to spare the nerve bundle that governs all kinds of manly behaviors tied to our junk (‘nough said). Those nerves, and the muscles around them, also control flow of pee. And he warned me that I might laugh, cough, bend over, fart or lift something and lose control. Hence his recommendation about the man diapers. Fact is, none of that happened. So I’ve ditched the diapers. I have better control of my bladder than any kid under the age of 10. Yeah, I hit the commode more frequently than before, but otherwise bone dry.
So my Movember 2017 story has come to a close. I’m telling my story to as many men as I know. Have to admit that 90% of the reason is that I don’t want any of the great people I know to allow a cancer cell prison break and end up missing their kids’ adulthoods. The remaining 10% of the reason is that laughing about some of the gory details helps cleanse the experience for me and reminds me of the kind of stories I shared with buddies as a frat boy in college.
If you read down this far – first – thanks. Second, keep all this crap in mind as you visit your own doctor. If he sees something weird in your PSA score, listen to him better than I did (initially). If he tells you to get a biopsy, go do it. The thumbtacks in your butt will pass. But it might just save your life. And, if any of my experience can be helpful to you – please don’t ever hesitate to talk to me. You’re only getting this email because I consider you a friend. It’d be great to sit across from you on a rocking chair in 20 years sharing a Metamucil Shandy and laughing about this all over again.
Happy Movember 2017. Mine was.
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