Month 143 – Much Improved

I don’t know where the time has gone. It’s hard to believe that we’re approaching two months since ending the salvage radiation therapy.

On the whole, things have improved significantly for me since then. My energy level has returned to pre-zapping levels, except when I’m stupid and stay up way too late at night (that’s something I can control). That’s been a good thing because I’ve been able to get out and enjoy the world again.

As far as the urinary control issues are concerned, they’re much improved, too. I opted to stop the Tamsulosin (Flomax) near the end of September, and that seems to have helped. My frequency is greatly improved. During the day, I can go several hours between runs to the toilet, and at night, I’m only have to empty my bladder one to three times a night. That’s a godsend.

The urgency still can be a bit of an issue. There are times where I don’t have much time to get to the toilet if I let things go a little too long. On a related note, since stopping the Tamsulosin, my leakage / incontinence has improved as well, even with the urgency. That’s a positive, too.

I had a video appointment with my primary care physician about the pain I’ve been experiencing in my back. In short, even though things seems to be slowly improving (even after the call with him on 26 September), he still wants me to have an MRI to see what may be going on. That’s scheduled for this Friday.

I’m not exactly sure how the hormone therapy works as you approach the end of the six month dosage period, but I’m guessing its effects may linger another few months beyond the end of the dosage. Again, I’ve been blessed in that my only real side effect has been the mild fatigue—no weight gain and no hot flashes. (Even though all three of my doctors say my back pain is unrelated to the hormone therapy, I’m still not convinced. There’s a first for everything, right???)

The radiation oncologist’s office wouldn’t schedule my three-month follow-up appointment until the end of October when they had a better handle on the doctor’s November schedule. I’ll get my PSA checked again in November in advance of that appointment, and I have a follow-up with the urologist on 13 December.

It’s good to be back into a more normal state after all of that. Let’s hope that there are no long-term radiation side effects that start popping up two to five years down the road.

Header Image: Autumn leaves, Santa Fe, New Mexico

Day 4,315 – A Week After SRT Ended

If you recall my last update, I was all abuzz with energy on my first day after salvage radiation therapy ended. Well, that didn’t last long.

Sunday and Monday I was pretty much knocked out with fatigue, and Tuesday wasn’t much better. The rest of the week saw slight improvements with each passing day, but you would have still found me taking a cat nap here or there.

The urinary frequency is still there, meaning I’m still running to the toilet four to six times a night which is annoying. But there has been another change, and I’m not sure if it’s a result of the radiation, the Flomax (Tamsulosin), or a combination of both.

Post-surgery, pre-radiation, I would get the urge to empty my bladder and I’d have time to make it to the toilet and then consciously start the flow to empty my bladder. Since the radiation, the time between my brain receiving the urge to empty my bladder and the time I need to be at the toilet is much shorter. It also seems that my ability to control the start of the flow is lessened to a degree, meaning it starts flowing on its own. That’s led to one minor accident where I was just a few seconds shy of getting to the toilet.

I’m not overly concerned about this at the moment, as it’s still early after the radiation ended. Plus, it may be the Flomax that’s contributing to this as well, and the radiation oncologist said it would be acceptable to stop taking it around the end of September if I felt it wasn’t helping me with the urinary frequency. However, if it continues beyond that, I may have to get one of those “Where’s the toilet?” apps for my phone. 🙂

This morning, I was surprised by blood on the toilet paper after my morning constitutional. I’m pretty sure it’s from irritated hemorrhoids rather than from something deeper inside. It’s something to keep an eye on going forward.


You may recall that, back in June about five weeks after I received my Eligard injection, I was noticing a dull musculoskeletal ache in the middle of my back. Through the summer, that stayed pretty consistent—just a minor ache in the background not causing any issues. It was tolerable and I didn’t think much of it. In the last few weeks, that’s changed.

The ache is more intense and a bit more widespread across my back than when it first appeared. Plus, I can have brief shots of acute pain if I move suddenly or twist my body in a weird way (like after unexpectedly bumping into something). It’s more like a muscle spasm response than anything else. But it can and does impact how the way I walk (a little more gingerly) and how I stand up.

Of course, hormone therapy is known to contribute to musculoskeletal issues, and one of the listed side effects of Flomax is “body aches.” Perhaps they’re additive.

Of course, my mind also has to go down the path of possible distant metastases to the spine or ribs even though it’s extraordinarily unlikely given where my PSA was at going into SRT (0.36 ng/ml). Still, it’s a conversation that I’m going to have with my urologist in my meeting on 20 September.

Stay tuned for more to come.

Be well!

Image: Salton Sea, California

Zapping Session #21 – Week Update

This morning’s Zapping Session #21 was canceled because of equipment issues—a make-up session will be added at the end—but the rest of this week’s zapping sessions were quite routine across the board, with a minor issue on Monday.

In addition to having to have a full bladder, you also have to have an empty rectum. Despite having had a bowel movement just prior to the session, the CT scan revealed a little stool left behind. That concerned the technicians, so they called the radiation oncologist over to see if they could proceed with the zapping. He gave the green light after evaluating the size and positioning and we completed the session as usual. That was a first. Glad to see that the imaging safeguard in place is working.

I had a different set of technicians zapping me this week and the one seemed to be a bit more persnickety about my bladder status, which I appreciate. She gave me some updated guidance on how to make sure my bladder was full. In essence, she said to make sure to drink water throughout the day so that my body is hydrated (especially in our warmer weather). Otherwise, if I’m not hydrated, when I drink the liter of water in the morning, it gets diverted to where it’s needed in the body first rather than to the bladder. Makes sense.

Based on that, I’ve actually started drinking water after each time I empty my bladder—even in the middle of the night—and that seems to have helped keep me closer to a full bladder (after only one day of using this method).

Yesterday’s session was the fastest yet: 23 minutes from leaving my house to being back in my house. The patient who’s normally ahead of me on the schedule was done, and not more than a few minutes after I checked in, I was on the table getting scanned for positioning.

That really makes me appreciate the fact that I am able to use this facility and not the other one offered up. The other facility is 18 miles / 29 km from home and, depending on the the time of day and traffic, it could take 35 to 60 minutes to get to, plus there could be delays at the entrance gate to the military base the hospital is located on. Managing bladder timing under those circumstances would have been a nightmare.

On a positive note, my fatigue has been noticeably less this week than last, and that’s a good thing. That just means that I have more energy to run to the toilet more frequently. 😂 The frequency is a bit annoying and even limiting.

I find that it’s a little challenging to go out and play immediately after the zapping session unless I could guarantee that a toilet is available on relatively short notice. After surging my system with water in the morning, I find that I’m emptying my bladder three or four times in the first two hours or so after the session ends. Once that water is purged from my system, I get back onto a more normal schedule of emptying my bladder every two hours or so, give or take.

Now, it’s off to the barber shop without fear of having to bust out of the chair and run to the toilet. I hope.

Enjoy the weekend and be well!

Month 129 – Incontinence Run Amok

Okay, if you don’t want to read a frank discussion about incontinence, then CLICK HERE to go find some cute kitten and puppy videos. Otherwise, read on…

In short, I don’t know what in the hell is going on with my incontinence. For years, I’ve been able to get away without pads because I was routinely “dry.” A sneeze or a cough might cause a few drops to come out, but that was it.

But in the last month or so, things have changed considerably for the worse. I’m back to wearing Depend Shields for Men on a daily basis, but I’m discovering that those may not be enough protection.

A week or so ago, I was watching TV on the sofa in the family room and had to get up to go to the bathroom. It wasn’t anything urgent—just a normal call from nature. As I stood up, my bladder just emptied itself right there on the spot. Of course, the shield wasn’t equipped to handle that and my trousers were soaked.

Today at work near the end of the day (thankfully!), I had a tickle in my throat and started a mild coughing fit to get rid of it. With each cough, I could feel a squirt going into the pad and, before long, the pad was at capacity and I could feel my trousers begin to get wet. (I wear only black trousers for this reason—to help hide any “accidents.”) What shocked me, though, was there was an area of wetness that extended to my shirt about 10 cm/4 inches above my belt line! “How the f*ck did that happen?!?” I have no idea.

Needless to say, to have this much change in such a short period of time is more than disconcerting. In fact, you could say that I’m pissed off at getting pissed on. 🤬 (Yes, that’s dark prostate cancer humor.)

I did check online for the lab results for the UTI tests that we did last week, but I only see the bloodwork results and not the urinalysis results. I emailed the doctor to find out what’s going on and reported the last few incidents, too.

Edit after posting:

I’ve tried to determine what’s causing this, but have been coming up empty. I haven’t changed the volume of liquids that I drink on any given day. It doesn’t seem to be restricted to a certain time of day. My weight, although more than I would like it to be, has been pretty stable throughout the last year or two. It’s mystifying and makes me wonder if it’s related to my increasing PSA somehow.


There’s no update to share on the scheduling of the 68Ga-PSMA-11 PET scan. I figure I’d let the administrative wheels churn through the end of this week before asking the doctor on his progress with the referral.

Be well!

Day 3,819 – Doctor’s Visit

The dreaded tools of the DRE trade.

My visit to the urologist this afternoon went just as expected, and even a little better.

With the San Diego VA Medical Center being a teaching hospital, it’s rare that I see the same doctor twice. Because I liked the doctor I saw last time because of the conversation we had and the plan that we mapped out together, I specifically requested to see her again this time. Unfortunately, a young resident showed up in her place.

That actually may have worked to my advantage.

Dr. K started the conversation by asking if I had come to a decision as to whether I wanted to do salvage radiation therapy or hormone therapy. I was a bit taken aback by that—”Haven’t we skipped a few steps here, Doc?”—but then I remembered the way that Dr. L wrote up her notes from my visit with her, it would be easy for him to come to that conclusion.

I filled in a few of the blanks with Dr. K regarding our plan to follow up the negative CT and bone scans with an Axumin or PSMA PET scan in hopes of finding the cancer before making the SRT vs. ADT decision. He dutifully reminded me that either or both scans could come back negative, too, meaning that the cancer was still likely in the pelvis or prostate bed.

Interestingly, when we were talking about the merits of the Axumin and PSMA PET scans, he immediately went to, “Why even bother with the Axumin scan; go straight to the PSMA scan.” I didn’t even have to nudge him in that direction. He and I were on the same page.

To his knowledge, though, SD VAMC had not yet referred anyone to get a PSMA PET scan, but he seemed eager to figure our how to make it happen and have me be the first (or among the first) to be referred. He wasn’t even sure where to begin, so I told him.

Instructions for PSMA Referral

I opened my file folder that I had with me and pulled out the one-page sheet that I had put together, stepping him through the referral process that UCLA had shared with me. It was all there for him, and he asked, “May I keep this?”

He did admit, though, that he had no idea how long it may take to get approval from the hospital team before he could even ask for the referral, so this may play out over a few weeks or longer. Rest assured that I’ll keep on top of this, asking for periodic updates.

I’m pretty excited that we’re moving in the direction of going straight to the PSMA PET scan, but also recognize there can be a number of administrative twists and turns along the way.

In the interim, we agreed to test my PSA again in early November, keeping on a four-month testing cycle. I’m okay with that while we’re trying to sort everything else out.


We also talked about my incontinence episodes becoming more frequent and more substantial in the last 6 weeks or so. He wanted to rule out a urinary tract infection, so he sent me off for some labs and we’ll see what they yield.

These episodes have put me back in incontinence pads for the last few weeks. Before, a sneeze or a cough would yield a few drops; now, they yield a squirt. Not good.

More to monitor and report on going forward.

That’s it for this post.

Be well!

Month 125 – Urinary Frequency

The only constant is change, and things have been changing for some inexplicable reason on the urinary frequency front, especially at night.

For years after my surgery, I could make it through most nights without having to get up and use the toilet. If I did, it was only once per night. In the last month or two, I’ve been noticing that I’ve been getting up two, three, and even four times a night to drain my bladder. That certainly impacts quality and quantity of sleep.

I wish I had an explanation for it. I really haven’t changed any drinking habits where I’m drinking lots of liquids all evening long or just before going to bed. It’s just happening.

Perhaps the only plausible explanation is that I have been trying to go to bed about an hour to an hour and a half earlier than I used to (I was a terrible night owl), and that means longer time in bed. I’ll just start a little spreadsheet to track it all to see if I can see a pattern emerging. (Nerd!)

My next PSA test will be near the end of June with the doctor’s appointment on 6 July 2021.


Other than that, things are slowly improving in San Diego. we’ve moved from the Purple Tier to the Red Tier and now to the Orange Tier, meaning that things have become less and less restrictive on the COVID front. Let’s hope that we continue to move in the right direction.

As far as vaccinations are concerned, 25% of all adults in San Diego are fully vaccinated, and 50% have had at least one dose. That’s good.

Stay well!

Month 124 – Prostate Cancer a Chronic Illness?

It’s tough to come up with a decent prostate cancer-related topic for this month. I guess when things are going relatively well, that’s a good thing.

I’ve gotten to the point where I think of this more as a chronic illness like arthritis than I do a potentially life-ending cancer. Last month’s bump up in my surprise PSA test hasn’t fazed me at all. It is what it is. Move on. Maybe that’s a mistake.

I will say, though, that I’ve probably packed on a couple of pandemic pounds over the last twelve months of quarantine and work from home and, when that happens, I tend to see a slight uptick in minor incontinence episodes. Nothing major. A little dribble here, a little dribble there. More a nuisance than anything. Time to get more active and shed a few of those pounds.

Speaking of getting active, I did just that after my last post. I took my first ever trip to Death Valley. I figured if I can’t socially distance there, where can I socially distance? It’s a remarkable place. Going in February is one of the best times to go. Temperatures were in the low 70s °F/ 20s °C during the day and around 45 °F/7° C at night. Not bad at all.

After visiting Death Valley, I drove to the Valley of Fire just about an hour northeast of Las Vegas. That was amazing as well. If you’re looking for a diversion, you can check out my write-up and photos HERE. My apologies for the slow-loading photos. I uploaded the full resolution versions, but if you zoom in on any of them, the detail is incredible.

I’ve got King’s Canyon/Sequoia and Yellowstone National Parks on the agenda for later this year barring any massive changes in the pandemic status. Once this is all lifted and international travel is allowed again, New Zealand has made it to the top of my bucket list. Fingers crossed.

That’s about it for this installment.

Stay well!

Life After Radical Prostatectomy: 9 Years Later

So it’s been 9 years since my radical prostatectomy on 4 January 2011. How am I doing?

Status

If you’ve been following along, you know that my PSA has taken a bit of a roller coaster ride over the last few test results, with the trend continuing upward with the last reading at 0.16 ng/ml. I’ve got my next blood draw on the calendar on 4 February 2020 and we’ll just have to see what happens next.

Emotions

Faithful readers of this blog will have noticed that I skipped my regularly scheduled post in December. Part of the reason behind that was I was insanely busy at work, trying to get almost 300 volunteers to staff five events in less than two weeks, and part of it was that I had been pretty successful putting this cancer crap on the back burner for a while, and it felt good.

I don’t necessarily subscribe to the “ignorance is bliss” theory of life, but I think that I’ve been on a subconscious break for a while knowing that the next PSA test will very likely force my hand—enjoying the calm before the storm, so to speak.

Incontinence/Urinary Control

I’ve been pretty much maintaining the status quo in this department for a while now: minor stress incontinence that’s more a nuisance than anything else. Although, when I was down with the flu in November, I was going through three or four pads a day with the severe coughing that I had. It wasn’t fun. (Always good to have a supply of pads in the cupboard.)

There were also a few nights in November and December where I had to empty my bladder 3-5 times in 6 or 7 hours of trying to sleep. Not fun and made for a tough day afterwards. I’m not sure what that was about, as I didn’t increase my fluid intake above normal any of those nights. Thankfully, I’m back to normal and can pretty much sleep through the whole night without needing to run to the toilet.

Sexual Function

The last time I wrote one of these updates, I said that I had been regressing a little in this department, with erections in the 60%-70% range. Things have seemed to improve a little on their own since then, and I’m probably back in the 70%-80% range, with an occasional 90% day.

Summary

I’ll continue to enjoy the calm before the storm for now and we’ll see what happens to my PSA in early February. If it goes up again, referrals to radiation oncologists and lots of imaging will likely be in my future. If it stays the same or decreases again, who knows what path I’ll choose. No need to get ahead of myself right now. We’ll get the results, talk to the medical team, and go from there.

Day 3,302 – Jets, Pads, and Discs

This is the famous Jet d’Eau in Geneva, Switzerland. It shoots 500 liters / 130 gallons of water per second 140 meters/460 feet into the air. Keep that image in mind.

DSC00602

On Thursday, 14 November, I went and got my obligatory seasonal flu shot—a necessity working in a hospital. It was no biggie.

Friday afternoon, though, I was feeling a bit wonky—a bit of a chill and general tiredness—but it only lasted a brief while. I went to an event for work later that evening and did just fine.

Saturday morning was fine, too. I threw my camera in the car and I was headed out to take some photos. Before I got out of town, though, the chills and wonky feeling returned, a little more intense than the previous day, so I bailed on the photography and went back home for a quiet evening of rest just in case something might be taking hold.

Sunday was fine, but Monday at work, a sore throat and headache kicked in full-bore, and the next thing you know, I’m curled up in bed at home Tuesday, Wednesday, and Thursday.

The bug had me trying to cough up my toenails for the better part of those three days. And each time I coughed, there was a jet (see photo above) of something other than Eau coming out of my nether regions. Back into incontinence pads I went. And I went through pads like, well, pee through a man without a prostate. Not fun.

To add insult to injury, somewhere in one of those cough-up-your-toenails coughing fits, I must have moved one of my herniated lumbar discs around. (Old injury from 1986.) Now, in addition to jetting pee into my pad with each cough, I simultaneously send a bolt of lightning/pain down my right leg.

Let’s just say it’s not been the best of weeks. (Yeah, I know. Dial 1-800-Waaaahh!)

The cold is slowly relenting, and I’m sure it will be behind me by Thanksgiving. The nerve in my leg? That’s another story…

I’ve been pretty lucky with my back over the years just by being very conscientious of what my limits and capabilities are. About 2005, though, things went bonkers with it.

It would take me 10 minutes to put a sock on my foot and another 10 minutes to put the shoe on, and the only position I was relatively comfortable in was standing. A series of visits to a physical therapist (including traction), did nothing to improve the situation.

I went off to a Harley-Davidson-riding female neurosurgeon to see what could be done. We did all the scans, and she found that a piece of my disc had broken off and was the culprit that was bouncing on the nerve to my leg. She refused to do surgery (risk > reward), but tried using a steroid injected into the spine to dissolve the piece of disc that was floating around. It worked and I haven’t had any serious problem since then.

Historically, when my back does flare up, it tends to resolve itself on its own in a matter of days to a few weeks. This feels a bit different, though. It’s impacting my gait; my right leg lights up when I try to take a normal step, but if I take about two-thirds of a step, there isn’t as much pain.

Moral of the story: Don’t get a flu shot.

Okay. Disregard that. Get your flu shot.

This is the first time I’ve had a reaction to a flu shot like this and, who knows, it may not have been the flu shot at all. It may have been just pure coincidence that I caught the bug around the same time I got the shot. I do work around sick people in a hospital and I take public transit to work, after all. Plenty of opportunity for virus transmission.

Time to pound down a shot of cough medicine and call it a night.

The real moral to the story: Keep plenty of pads on hand. You’ll never know when you’ll need them to tame a jet.

Life After Radical Prostatectomy: 8.5 Years Later

So it’s been 8.5 years since my radical prostatectomy on 4 January 2011. How am I doing?

Status

My PSA dropped from 0.13 ng/ml to 0.10 ng/ml at the last test back in March, which was quite the pleasant surprise. That’s more in line with three tests prior to the 0.13 test, so perhaps the 0.13 was the anomaly. In any case, we agreed to test in six months instead of the four month cycle that I had been on, and I’m okay with that. Two extra months of not worrying about PSA is a good thing.

Emotions

There isn’t a day that goes by where cancer doesn’t pop into my mind at least tangentially. The good news is that with such a slow upward trend in my PSA (PSA Doubling Time of 155 months or so), I’ve been able to shift my thinking to managing this more as a chronic illness than something to panic over. That’s been emotionally liberating. Of course, I may be playing with fire and my test in October will snap me out of that mindset.

Incontinence/Urinary Control

There really hasn’t been much change in this area. Still the occasional stress incontinence squirt and the post-pee dribble if I don’t go through my routine to drain my urethra. I’ll stick a pad in my underwear if I know I’m going to be more physically active, as that tends to cause a few leaks as well. On the whole, it’s more a nuisance than a real quality of life problem.

One of the good things is that I rarely have to get up in the middle of the night to empty my bladder, which means that I can sleep through the night. Mind you, though, that I need to get better at getting more than 6-7 hours of sleep per night, and that may change the equation a little.

There are times during the day, though, where I can have a sudden need to urinate right now, even though my bladder is far from its capacity. It’s an occasional thing, fortunately, and I’ve always been able to make it to a toilet in time.

Sexual Function

This is one area where I seem to be regressing a little. Erections aren’t as strong as they used to be; now they’re in the 60%-75% range. Again, that’s without chemical assistance. I may talk with the doctor about this the next visit.

Summary

My shift in thinking of this as more of a chronic illness has really been helpful. The stress and worry aren’t nearly at the levels that they once were, so that’s good. But that lasts only until the next PSA test, and then we take the latest factoid and go from there.