The Prostate Saga, a Cautionary but Uplifting Tale (Hopefully)…

 

As I’m writing this little story, I’m listening to my favorite album Full Sail by Loggins and Messina, which was released in 1973, when I was an impressionable 18 year old, and I still love this album!  Whenever I feel a bit stressed or down (which is very unusual for me), I put this album on.  In the old days, we would put the LP on the record player, but now I just find it on YouTube.  I’m mentioning this so that you can get a bit of context of what is about to unfold.  

So, Benign Prostate Hyperplasia (or BPH, as it is also known) is, according to Google “…also known as prostate enlargement, [which] is a common condition in men where the prostate gland grows larger and can cause urinary problems. This enlargement can put pressure on the urethra, the tube that carries urine from the bladder out of the body, leading to difficulties urinating. BPH is not cancerous and doesn't increase the risk of prostate cancer.”  Also, according to our current source of truth, Google, “Benign prostatic hyperplasia (BPH) affects more than 50 percent of males older than 60, and more than 80 percent of those older than 80.”  Untreated, it can lead to kidney failure, and is a nasty condition.  Now, for us older guys, it is an insidious condition, a condition that develops over decades, and even though it gets worse, we somehow get used to it.  So, when we are in our 30s, and we get up to pee maybe once per night, everything is OK.  We get in our 40s, and we need to pee maybe twice per night, and we get used to it.  Now, in our 50s, we get up three to four times per night to pee, and during the day we need to run and pee 7-8 times, and it never really feels like we have been able to empty our bladders.  So, we get in our 60s, and by now we get up 5-6 times per night, pee a few drops, and never get a good night’s sleep.  Before I got my prostate treatments, I used to call it the dreaded “seven and seven”; get up seven times per night, and pee seven drops of urine every time.  But, somehow we get used to it, and that’s the problem!  

However, in April of 2020, back during the beginning of the dreaded Covid 19 and all it’s crazy lockdowns, something new developed for me that changed everything.  I stared to become incontinent at night, waking up having soiled my underwear and PJs, and on a bad night a urine stain on my sheets.  I started sleeping on an old towel, “just in case”…  So, I thought that it was time to have this checked out, and maybe figure out what’s going on.  The first urologist I called didn’t do any live visits, only tele medicine, but I was lucky to find Dr. M  the Urologist in Laguna Hills who actually saw patients face to face (even though we were all wearing masks of course).  So, on the 28th of April, 2020 (if I remember correctly), I went for my first consultation with Dr. M.  I arrived about 9 AM in the morning, and was asked to give a urine sample.  I was able to squeeze out 2-3 ounces of pee in a little cup, and then I went to see Dr. M and his technicians.  So, for the first time in a very, very, very long time I had a 24-year old woman grab my penis (well, grab is an exaggeration, not much to grab anymore)!  No, this was not for pleasure, instead she proceeded to put a 14 French (approximately 4.7 mm in diameter) catheter up my shlong, all the way up to the bladder, and quite rapidly drained out 800 ml (about 27 liquid oz) of urine from my balloon-like bladder.  I was astonished!  So, Dr. M explained that due to my BPH, my bladder had been so distended, and that was the source of my incontinence; when I would turn around at night, my bladder would be squeezed, and since it was sooooooo full of urine, it would just squirt out, uncontrollably.  BTW, this lead to a what I believe is a great doctor – patient relationship, and I still see Dr. M at least every year.  He was, in the end, able to help me, but more of that story later.    

So, my treatment started like this; I would self-cath (a fancy term for using a urinary catheter on myself) three to four times per day, and he also proscribed tamsulosin (or Flomax as it is also known), 0.4 mg, to be taken twice per day.  He sent me home with a load of urinary catheters, and, erroneously, I thought he said to use the urinary catheters for 3 days to shrink the bladder (he actually said 30 days).  He also put me on a liquid ration, only 48 oz of liquids per day, also in an attempt to shrink my balloon bladder.   

Now, a couple of things; Flomax is an interesting medication, it “…belongs to a class of drugs called alpha-blockers. It works by relaxing the muscles in the prostate and bladder neck, allowing urine to flow more easily and improving urinary symptoms associated with BPH…”.  So, at least in theory, it should make it a bit easer to pee, but like all medications, it also has side effects…  For me, at least in the beginning (I’m still on Flomax, almost 5 years later), I experienced a decreased amount of semen, fatigue, drowsiness, flu-like symptoms, loss of appetite (well, by now my appetite has returned, to the detriment of my waist), and very vivid dreams and nightmares, often very violent.  Weird stuff!  

Secondly, for most of us guys, the thought of shoving anything up our precious penises is one of those things that makes us cringe, but, when you are faced with the choice of having a Foley catheter (“A Foley catheter is a thin, flexible tube inserted into the bladder to drain urine, often used for patients who cannot urinate on their own or for monitoring urine output. It's an indwelling catheter, meaning it's designed to stay in place for a period of time.”  It has a balloon at the end which stays in your bladder which keeps it from coming out) up your bladder for an extended period of time (which can lead to urinary tract infections), vs. using a catheter on yourself 3-4 times per day (which reduces the chances of urinary tract infections), I choose the latter.  It is funny how you get acquainted with your anatomy when using a urinary catheter, a 14” long lubricated tube that goes through the urethra (the pee tube), the urethral sphincters (resistance for sure) then the prostate (more resistance), then all the way up the bladder, and out comes the pee with a gush!  I would use a catheter three times per day; once at 6AM when I woke up, then at 2PM in the afternoon, then again at 10PM before bed.  It is funny what we can get used to!  

So, May 2020 was pretty much the same; I would take my Flomax, drink my 48 oz of liquids, self-cath three times per day, and resign myself to my fate.  My bladder did not show any signs of functioning; even though I might have an urge to urinate, nothing would happen unless I used a catheter.  The thing with self-cathing is that you are pretty restricted to what you can do, and you need to shlep around catheters and sterile wipes for the afternoon elimination session.  So, traveling is pretty much out of the question, but it beats having damaged kidneys!

During this time, I had what’s called urodynamic testing, which is “a group of procedures used to evaluate how well the bladder, sphincters, and urethra work together to store and release urine. These tests help diagnose and understand issues like incontinence, overactive bladder, and urinary retention.”  This was quite unpleasant; I went in and members of Dr. M’s staff would put a catheter up my urethra, and fill up the bladder with 500 mls of sterile water.  Then the idea is to hold it, and then see if the bladder is able to eliminate.  In my case, no; my bladder was essentially dead, and it did not have any ability to contract, probably due to years of being distended and always full of urine.  So, I felt pretty defeated, thinking I would have to resign myself to a life of constant self-cathing and prophylactic antibiotics, in order to ward off any possible urinary tract infections.  Around this time, we were told to go back to the office every other day, and I would go back with a backpack filled with my afternoon catheter, and the sterile wipes.  At around 2PM I would go to the restroom and do my thing, just hoping that we didn’t have an earthquake at this time, and I would have to run out of the bathroom with a dripping catheter hanging from my shlong!  

I also had a prostate biopsy done by Dr. M, not the most pleasant of tests.  After the biopsy, Dr. M told me that he had found a 1 mm cancerous cell on my prostate, but he reassured me that “this is not what is going to kill you”, since, apparently, prostate cancer is a very slow growing cancer (but more on that later, discussing my dad Leif’s story).  In Dr. M’s mind, I’m sure he believes that as somebody who lives in the US, heart disease will probably kill me long before prostate cancer will (however, on that note, I try to keep my weight in check, and I don’t smoke or drink).        

During this time I would see Dr. M regularly, and we started talking about possible treatments.  My problem was my dead bladder, which would mean that even if we could take care of my BPH, if my bladder would not contract, it would all be for nothing.  Dr. M does a procedure called Rezum, in which “the Rezum System delivers targeted, controlled doses of the stored thermal energy in water vapor directly to the region of the prostate gland with the obstructive tissue causing the lower urinary tract symptoms (LUTS) secondary to benign prostatic hyperplasia (BPH). During Rezum Therapy, which takes place during one short office visit, natural water vapor is released throughout the targeted prostate tissue. When the steam contacts the tissue and turns back to water, it releases energy, killing the excess prostate cells that squeeze the urethra. Over time, the body’s natural healing response removes the dead cells and shrinks the prostate. With the extra tissue removed, the urethra opens, relieving BPH symptoms while preserving erectile and urinary function.  The procedure does not require general anesthesia and is performed under oral sedation or local anesthesia.”  Now, that all sounds pretty fancy, and maybe even quite innocuous, but in reality it involves burning the prostate with superheated steam, to induce third-degree burns in the prostate, which, over time, does indeed shrink the prostate as it heals.  Nevertheless, at this point I had nothing to lose, even though Dr. M warned me that guys in my position (i.e. guys with dead bladders) only got a benefit from Rezum in about 50% of the cases.  But again, I had nothing to lose; either do something and hoping for the best, or continue using a catheter three times per day for the rest of my life.  I also chose Rezum over Transurethral Resection of the Prostate (or TURP as it is also known), due to TURP’s rare but serious side effects such as urinary incontinence and impotence.  

So, sometime in August (if my memory serves me) 2020, I was scheduled for the Rezum procedure in Dr. M’s office, and put in what looked like a gynecologist’s chair.  As far as anesthesia, I was put on nitrous oxide for the first time in my life, and it was an interesting experience.  Once you start to suck on that nitrous oxide tube, that’s all wanna do, just keep sucking and sucking!  It does not put you under, because at least in my case, I heard everything that Dr. M and his attendant said, but I was in a sort of weird, out-of-this-world state where noting mattered, except for sucking on that tube!  I remember during the procedure Dr. M saying to his attendant that “I usually do 8 steam injections, but in this (i.e. mine) case I used 9”.  After the procedure, Dr. M placed a Foley catheter in my bladder, which I was to keep in place for five days, then after that I was supposed to go back to my old routine of self-cathing.  As I got out of the procedure chair, I was surprised at the amount of blood, which speaks to the vascular nature of that whole area of the body.  Anyway, home I went, feeling pretty much out of it.  I was still on my 48 oz liquid restriction, which may explain the later events.

For the first week after the Rezum procedure, I pretty much just spent the day on the couch, with a Foley catheter in my bladder, and a urine bag strapped to my leg, not feeling very great.  I usually walk some 15,000 steps per day, walking our two huskies, but during this week I did pretty much just the minimum, and maybe walking some 3,000 steps per day, just short walks with the dogs.  After five days, I removed the Foley catheter per Dr. M’s instructions, and resumed (no pun intended) my “normal” routine with self-cathing and Flomax twice daily.  

After about two weeks after the procedure (late August, I think), I woke up at 2AM with what I thought was the worst leg cramp I ever had in my left calf.  I immediately started walking around, and since leg cramps are oftentimes associated with dehydration, I started drinking a lot of water.  But, the leg cramp did not subside, so at about 4AM I told my wife that we needed to go to the ER, and see what’s going on.  We went to Hoag medical center in Irvine, some 10 minutes from our house, and after an ultrasound, I was diagnosed with a superficial blood clot in the leg, also known as a superficial thrombophlebitis.  It was really weird and painful, and my left calf was swollen and decidedly colder to the touch than my right.  I was discharged around 6AM, but since I had drunk a lot of water, I had brought a catheter with me, just in case.  I went to the bathroom to do a self-cath, but I couldn’t get the catheter up into the bladder; instead, (I think) the catheter went up into the prostate by a false passage (I still don’t know why, and I don’t really wanna dwell on it).  I pushed and pushed, but the catheter just wouldn’t go in up to the bladder.  Mind you, at the time I was using a pretty stiff plastic 14 Frensch catheter, which was normally convenient due to the fact that these catheters came already lubricated, but in this case they did not work.  (Later, I switched to a 16 French rubber Coude tip catheter which has an angled tip, which, although it needed to be lubricated, got into the bladder just fine).  In a panic, because I really, really needed to pee, I rushed out to the nurses’ station and begged for help.  One of the nurses was able to get a catheter up my bladder, and after having relived myself, they placed a Foley catheter so that I could eliminate freely.  I think that after the Rezum procedure, the prostate was so swollen and inured which lead to the difficulty in getting a catheter up in my bladder, but I don’t really know.  Also, normally Dr. M the Urologist places a temporary prostatic bridge catheter (PBC, which, according to Google is“…a small flexible catheter that is inserted in the urethra and positioned in the prostate…”) in the urethra / prostate after the Foley catheter is removed to ensure that urine can flow unobstructed through the prostate while the prostate heals after the procedure.  However, since I was self-cathing, I couldn’t have a bridge catheter, and it is possible that my swollen prostate would not allow the catheter to go through.    

So, with a Foley catheter up my shlong, a urine bag strapped to my leg, and my left calf still aching, I was sent to Newport Beach to see Dr. M the Vein Specialist (not to be confused with Dr. M the Urologist).  Mind you, this was NOT a good day…  Even now, some five years later, I still remember feeling defeated and old, just plain old.  In between my ears, I’m still that impressionable 18-year old, who should not suffer from BPH, or have a superficial blood clot in his leg, and this wasn’t fair!!!!! 

Dr. M the Vein Specialist confirmed what they had found at Hoag Irvine, that I had a superficial blood clot in my left calf, and put me on a prophylactic dose of 10 mg per day of Xarelto, a blood thinner.  I really liked Dr. M the Vein Specialist, he is really a good guy, and really cares about his patients, but more of that later.  (One of the silver linings of this story is my wife’s varicose veins, which had gone untreated because according to a couple of providers, was not covered by insurance.  As I saw Dr. M the Vein Specialist, I also asked about my wife’s varicose veins, and asked if he could help her.  Long story short, he fixed her varicose veins, they never came back, and the insurance paid for the whole thing, and she is no longer self-conscious about wearing shorts.)  So why me, and why the blood clot?  Don’t know for sure, but I think two factors played a role; firstly, during the first week after my Rezum procedure I was pretty much bedridden, and second, being on a restricted liquid intake (if you want your blood to flow, drink a lot of water).  

So, I started taking Xarelto, but after about two weeks (on a Saturday) I stared seeing what looked like coagulated blood in my urine, so I went back to the ER at Hoag Irvine.  Interestingly enough, even though I was still self-cathing, I remember being able to pass some urine on my own as I was waiting for the ER doctor.  Anyway, they got a hold of the urologist on staff at the urology group that Dr. M the Urologist belongs to, and they strongly suggested that I stop taking the Xarelto.  A tough choice, stop taking the blood thinner and risk another superficial blood clot or worse, or continue to see blood in my urine…  So, I stopped taking the blood thinner, and the blood in my urine went away.  Some two, maybe three weeks later, I went back to Dr. M the Vein Specialist for my wife’s varicose vein appointment, and Dr. M the Vein Specialist scared me soooo much I started taking Xarelto again, this time on a Friday.  On Saturday, there was quite a bit of blood again in my urine, and by Sunday it was just gushing out, like I was peeing straight blood instead of urine.  I called Dr. M the Urologist, and he a) suggested that I stopped the blood thinner, and b) he put me on 5mg of Finasteride, which is a drug which helps to shrink the prostate.  So, may ask yourself, why didn’t Dr. M the Urologist put me on Finasteride when I first met him?  Well, Finasteride usually takes some three to six months to start shrinking the prostate, and in my case, he wanted to do something that would offer immediate relief, like self-cathing.  BTW, some five years later, I’m still on Finasteride.          

Around this time (maybe late September, 2020), I remember starting to be able to urinate a bit on my own, even though I was still self-cathing, which lead me to believe that maybe the Rezum procedure had worked after all, and that my prostate had started to shrink.  I had gone to see the physician’s assistant at the urology center, and she suggested that I started to measure how much I eliminated by using the catheter, and to keep a log of the same.  She gave me a urine measurement device, a large plastic measuring bowl that fits in to the toilet to use.   

So, this is how it went; at first I would eliminate about 9 oz of urine every time I used the catheter, but slowly it started to go down to 8, maybe 7 oz per catheter elimination, and I started peeing more and more on my own.  After a couple of weeks, I started to use the catheter only twice per day, and I still only got some 7 to 8 oz of urine every time, which meant that I was eliminating on my own and that my bladder, miraculously, had started to heal itself!  After another couple of weeks, I started to self-cath only once per day, and I started to see that the volume of urine that was eliminated during my self-cathing was gradually becoming less and less, 7, 6, 5, 4 oz per catheterization.  Again, this was great proof that my prostate had indeed shrunk, and my bladder was recovering!!!!  So, after about two months of this (now we are in November 2020), I was self-cathing once every other day, and getting three to four ounces of urine per catheterization, which was pretty much nothing!  Mind you, I had started to drink more liquids, and to this day I still drink a minimum of 64 oz of liquid per day, usually a diluted mixture of apple juice, cranberry juice, some artificial sweetener and the rest of it plain water.  So, the rest of the urine I was able to eliminate on my own, and when I went to see Dr. M the Urologist in late November, maybe early December 2020 and showed him my “urinary log” he told me to stop self-cathing, and I haven’t used a catheter since!  

 An outcome of my blood clot in my left calf was that I got pretty scared of using my left leg for playing drums (which, being a lefty, is the bass drum leg), and I stopped playing for a while.  Even though I had started practicing my drums in 2019 after a two year hiatus (and my usual practice session is at least an hour), after the blood clot in late August 2020, I was afraid that if I moved my left leg too much, maybe the clot would come back.  However, in the fall of 2020, I slowly started practicing again, playing along with AC/DC (Black Ice and Rock or Bust), and I would play maybe three songs into the albums, for a 15 minute practice session.  For those of you that are familiar with the albums, Phil Rudd’s driving playing is perfect if you wanna build up your playing stamina, and slowly I stared to add songs to the practice routine, slowly building it up to my usual one-hour practice sessions.  In December of 2021, I played a pick-up gig with Dr. H, playing for some 2 hours straight, so I’m no longer worried about my left leg!  

So today, I’m about five years out from my Rezum procedure, and, as I told Dr. M the Urologist last time I saw him that “I’m one of our success stories!”  I’m on three prostate medications; 04. Mg of Flomax once per day, generic 5 Mg of Cialis (which, in conjunction with Flomax supposedly helps to relax the prostate), and 5 Mg of Finasteride.  But, I can urinate freely, I haven’t been incontinent in the last 5 years, and as of the last six months or so, I usually only get up once or maybe twice per night to pee.  So, all in all, my urinary life is good, and that’s with drinking 64 oz of liquids every day!  So, you may ask, what was the secret?  Was it the Rezum procedure, or the medications, or both?  Well, I believe that it is a combination of Rezum, Flomax, Cialis and Finasteride.  My Prostate-Specific Antigen (PSA for short) numbers are very, very low; last time it was 0.51 (but when you are on Finasteride you multiply that number by 2), so very close to 1.0, which is really, really good.  Mind you, I’ve been doing PSA testing since 2010, when I met Dr. H (who is my General Practitioner, and very good  friend), and he told me about one of our mutual friends who had ignored PSA testing for four years, only to end up with stage four prostate cancer, so I got scared into testing.  So, my PSA numbers have usually been low, 2 or so, but lately they are even lower.  Also, after I got diagnosed with BPH, I stopped drinking coffee, and quit drinking caffeinated sodas.  (Giving up coffee was really hard, after 45 years of drinking coffee every day and I still miss it).  I also don’t drink alcohol, don’t smoke, and try to keep my weight in reasonable check (I like to stay below 190 lbs, not super heavy for a guy that is 5’ 9”), which I think also helps with general prostate health. When I last took a long flight (10 hours from LAX to Amsterdam in 2024) I got up and walked around the aircraft several times, and drank a lot of water, and I was also wearing an old analog wristwatch, set to California time, so I would remember to take my medication every 24 hours (I’m sure I could have set some alarms on my phone, but I am a dinosaur after all).  Now, on occasion, it still stings a bit when I urinate, especially if I’ve been on my feet all day, and I still leak a little bit (OK Peter, TMI…), but it is manageable by stuffing a wad of toilet paper in my underwear after I pee.  So, all in all, I’m indeed a success story, because now I can pee!!!!!!  

My dad Leif was not that lucky…  My dad, who was born in March 1937, had TURP when he was 56, which would have been 1993, so BPH apparently run in the family (and I tell my sons to watch out, especially when they head into their 50s).  He told me that toward the end before his TURP that he didn’t pee for three days, and he ended up in the ER.  So, fast forward to fall 2021, when he started seeing blood in his urine (he would have been 84 at this time).  We talked about it, and I thought it was due to him taking blood thinners (he had been on Eliquis for years for his failing heart); however, he went to have it checked out, and was diagnosed with bladder cancer.  Right before New Years 2022, he had Transurethral Resection of Bladder Tumor (TURBT), and, in combination with the tuberculosis vaccine, known as Bacillus Calmette-Guerin (BCG), which is shot up to the bladder via a catheter, it seemed like his bladder cancer was in check.  He would go to regular cancer checkups, and on occasion they would see something suspicious, but all in all, he seemed to be in remission.  Toward the end of 2023, he started to see some blood in his urine again, and this time they found prostate cancer.  He had an MRI, and they found that the prostate cancer had spread to his bones.  They also did PSA testing, and his numbers were off the charts; I think he told me that his PSA numbers were in the 70s (depending on the source, anything over 4.0 can be cause for concern).  Now, mind you, my dad was living in Sweden, where, even though Sweden is a highly industrialized, rich northern European country, they don’t do regular PSA testing!!!!!  This is astonishing, but when you have universal health care, something gotta apparently give.  So, his prostate cancer had apparently gone undetected, and when it was finally discovered, it was way too late.  In the spring of 2024, my dad had an orchiectomy (the surgical removal of the testicles), since the reduction of testosterone levels can slow down the growth of prostate cancer cells.  In addition, one of his kidneys was failing, and he had to have an indwelling catheter in the kidney to drain the urine.  In early April of 2024, my son Michael, my daughter Chelsea and her little boy John and myself traveled to Sweden so that my dad could meet his little great-grandchild.  He was very excited, but I could tell that he was not doing very well; I don’t think he was eating very much, and the kidney catheter was not comfortable for him.  During our 10 day stay in Sweden we tried to visit him every day, and it was great to see him (if you are interested, our April 2024 trip to Sweden was documented by my son Michael on his blog korvmikael.blogspot.com; all in all we had a wonderful time).  

Nevertheless, during May of 2024, my dad deteriorated further, and to make matters even worse, he got blind in one eye, which prevented him from his lifelong love of reading.  He was scheduled to be admitted to the hospital in the middle of June in conjunction with a regular bladder/prostate checkup, and after the checkup and after having enjoyed an ice cream, he asked to go to bed and have a rest.  His heart finally gave up and he passed away peacefully on the 17th of June, 2024, at the age of 87.  Now, 87 is not bad for a guy like my dad who smoked for 50 years, never ate a vegetable, and pretty much never exercised, but I can’t stop thinking that if the prostate cancer would have been diagnosed earlier (like with regular PSA testing), he may have made it to 88, but with all his other problems, who knowns?  I don’t wanna sound morose, but we all gotta go sometime..  

Moral of the story:  If you are a guy in your 50s, 60s or even older, and have never had your PSA levels tested, you gotta get tested (I don’t care where you live)!!!!!  If you are a guy, and you find yourself in my position; incontinent, trouble peeing, getting up several times per night to squeeze out a few drops of pee, go see a urologist, don’t wait!  Investigate various prostate treatments; TURP, Rezum, etc, and maybe one is right for you.  Maybe start talking to your GP and investigate medications such as Flomax, Cialis (which is now available in a generic form) and Finasteride.  Maybe this can give you some relief, and don’t wait until your kidneys start to fail!!!!!  Remember, being quiet and suffering in silence can kill you!!!!!!