Zapping Session # 6

I started my zapping sessions a week ago today and wrapped up my sixth session this morning.

Practicing filling and holding my bladder the week before the zapping started has paid off. I’ve been successful at filling and keeping a full bladder for every session. Although, on Tuesday there was a delay with the machine of about twenty minutes and I nearly had a bladder explosion on the table. That was cutting it a bit too close.

Every week, usually on Thursdays, I meet with the radiation oncologist to review how I’m doing and to discuss any side effects and answer any questions. That’s good.

As far as side effects are concerned, there are a few already popping up.

I’m not sure that it’s actually from the radiation yet, or simply because of the need to keep a full bladder, I am finding that I’ve been emptying my bladder more frequently. I mentioned that to the nurse, and she asked how frequently. I pulled out my phone and opened my log, looked at the numbers, and told her.
“You’re keeping a log??? I wish more patients did that!” (It’s good to be a nerd at times.)

It’s taken me a few days to get in the habit of documenting every time I pee, so that’s why you see so many incomplete entries on the first few days.

I’m also beginning to sense some skin irritation (itching, mainly) at the zapping site. It’s very mild and intermittent right now, and may increase over time. The irritation seems to be most prevalent within the first few hours after zapping. I guess it’s like a sunburn—it compounds itself as you go along with little time to heal in between. The doctor said that I could apply a moisturizing lotion after being zapped, but definitely not before being zapped.

The final side effect that’s beginning to take root is fatigue. I’m not sure that it’s actually from the radiation yet, or the fact that I’m peeing frequently through the nights, interrupting my sleep, or a combination of both. A little nap in the afternoon works just fine.

The radiation oncologists and the technicians both confirmed that they check that my bladder is sufficiently full and my rectum sufficiently empty on their scan before they start zapping to minimize any collateral damage. They said that if I wasn’t properly prepared, they’d tell me to get off the table and drink more water or poop. That’s reassuring to me.

I have to admit that it’s a tad annoying to have my retirement non-schedule interrupted by having a structured routine again. I was really getting used to not having to commute or show up to the office at a certain time every day. 🙂 Of course, I shouldn’t complain much because the whole process—driving there, waiting, zapping, and driving back—takes less than 45 minutes. Heck, yesterday, I was through the whole thing in exactly 30 minutes.

I have to admit, too, that I’m being a bit more cautious when going out in public with BA.5 COVID cases on the rise. I continue to wear my mask and am a bit more judicious in determining whether I want to go out. I know that radiation doesn’t necessarily compromise your immune system, but the last thing I need is a week or two delay in zapping if I came down with the virus.

So that’s my first week/six sessions of zapping under the belt. Thirty-three more to go.

Be well!

Zapping Session #1 – Done!

Just a quick post-zapping session post…

My appointment was at 9:45 a.m. and I arrived at the facility at 9:30 a.m. and met a friend who was there to provide a distraction and moral support—it was great to have him there.

I checked in and had about a ten minute wait before I was called back to the zapping room. There, the technicians explained what was going to happen and had me lie down on the table. We had a little challenge getting me lined up initially. I’m 6′ 1″ / 185.5 cm tall, and all of my height is from my waist up, so I had to scoot up on the table to get aligned.

They told me to wear gym shorts or sweat pants—something easy to pull down without metal (i.e., zippers) or items in my pocket. They put a sheet over my private parts, had me pull down my shorts to mid-thigh, and lined the lasers up on my new tattoos.

After that, they went into the control room and slid me into the machine. I stayed there for a good five minutes or so as they evaluated the fullness of my bladder (just right) and my positioning. They adjusted the table a few millimeters, all under the radiation oncologists supervision, and he gave them the green light to zap away.

The head of the machine rotates around the table, first in one direction and then in the opposite direction, buzzing as its delivering the radiation. That lasted probably around 5-8 minutes or so. It’s not like being in an MRI or CT scan tube at all. No need to feel claustrophobic.

As soon as they were done, they moved the table back to the start position, I got up, and walked out and hit the nearest toilet to empty my bladder. Easy-peasy. All totaled, including the drive there and back, I was gone about an hour.

The only surprise that I had was the paper copy of my zapping schedule that they handed to me. They have me scheduled for 39 sessions instead of the 35 that I thought we were doing. That has me ending on 30 August 2022. No biggie, I guess.

Lastly, they gave me a little ID card with a barcode on it and I simply scan it to check in for all my future zapping sessions.

I’ll have to admit that, a few days ago, I wasn’t all that emotionally worked up about this, and even this morning I thought I was pretty okay. But I can tell now just from the tension releasing from my body right now, I was far more worked up than I thought I was. The subconscious can do some weird things.

Going forward, I’ll probably not post about this after every session, but only when there are noteworthy things to report (like shorting out a multi-million dollar machine if I pee all over it or if/when the side effects start kicking in).

I need a nap. Or a beer. 🤣

Be well!

Day 4,255 – Green Light for SRT

I’m good to go to start my salvage radiation therapy on Thursday. Yippee. <sarcasm font>

You may recall in my last monthly update, I commented that I was having a dull ache in my testicles and groin. I really wanted to ensure that something weird wasn’t going on. Unfortunately, I experienced my first bit of a run-around with the VA Medical Center. After nearly a month of back-and-forth with the office and schedulers, I was able to see the urologist this afternoon.

In a nutshell, she did a physical exam and determined that there was no hernia. I can proceed with SRT Thursday.


I’ve continued my bladder-filing experiment through the weekend with mixed results. Again, I’m scheduled for zapping at 9:45 a.m. and I’m trying to be able to hold my bladder to at least 10:15 a.m.

Saturday, I had a complete fail—I couldn’t hold anything past 9:30 a.m., 15 minutes before my scheduled start time. Not good. Hopefully, I get this sorted out and what’s in my bladder will be sufficient for the zapping.

DateStart
Drinking
Stop
Drinking
Urgency
at 9:45 a.m.

(1-10)
Need to
Empty
Bladder
Volume
(1-10)
30 June8:459:15510:455
1 July8:359:10710:157
2 July8:309:0589:306
3 July8:459:15410:107
4 July8:409:15410:255
5 July8:309:15410:405

Regarding Eligard / hormone therapy side effects, I’m not complaining. Fatigue remains the prevalent side effect. Luckily, no hot flashes yet and, surprisingly, I can still achieve an erection and orgasm to about the same level as before the Eligard. (A bit more effort is required.)

I’m not sure how much I’ll write about the actual SRT once it gets started. I’ll probably stick to the noteworthy items along the way. Let’s hope it does the trick with minimal damage along the way.

Be well!

Day 4,251 – Experimenting

The engineer in me is alive and well. In preparation for starting salvage radiation therapy next week, I’ve started experimenting with the timing and volume of water needed to have a full bladder at just the right time.

The instructions I was given were to drink a liter of water and have completed doing so by 30 to 45 minutes before my scheduled appointment time. Because I can’t drink an entire liter in one shot, I give myself about 30-40 minutes to do so. I also created two rating scales (purely subjective, of course).

The first rating scale is the sense of urgency that I have at the scheduled start time of the zapping. I use a scale of 1 to 10, with one being, “I got this,” to ten being, “Get outta my way I’m gonna to pee in my pants!!” The second scale is an estimate of volume when I finally do empty my bladder. (During my mapping, we had to wait because my bladder wasn’t full enough.)

For reference, my zapping appointments are scheduled at 9:45 a.m. I figure that I’ll have to hold my bladder until at least 10:15 a.m. to allow for getting me aligned and get through the actual zapping itself.

Yesterday, my first experiment day, I started drinking at 8:45 a.m. and had consumed the full liter by 9:15 a.m., 30 minutes before the scheduled zapping start time. At 9:45 a.m., I rated my urgency at a 5 and, interestingly, I was able to not empty my bladder until 10:45 a.m. However, I was surprised that the volume was lower than I expected it and rated it a 5 (out of 10). I suspect that would have delayed the zapping a bit.

Today, I started drinking a little earlier at 8:35 a.m. in hopes of having a more full bladder. I stopped drinking at 9:10 a.m., 35 minutes before the scheduled start time. At 9:45 a.m., I rated my urgency as a 7 and had to empty my bladder at 10:15 a.m., with a higher volume output than the day before (also rated a 7).

DateStart
Drinking
Stop
Drinking
Urgency
at 9:45 a.m.
Need to
Empty
Bladder
Volume
30 June8:459:15510:455
1 July8:359:10710:157

I’ll continue to do this up until the start date to try and zero in on the perfect timing so the zapping goes as smoothly as possible once it starts next Thursday.

Yes, I’m a nerd.

Be well!

Day 4,236 – Mapping Completed

This morning, I got my first tattoos as part of the mapping process.

The whole thing went quite smoothly. My appointment was at 10 a.m., so I started downing a liter of water around 9 a.m. to make sure that my bladder was full. I may have consumed it a little slower than I should have, because when I was on the table, the technician said my bladder wasn’t quite full enough so we waited a few minutes to let my kidneys process my intake.

The cool temperature in the room accelerated my desire to run to the toilet to let all the water out, but I was able to hold on until the scan and tattooing were completed. But not by much.

The actual zapping will begin on Thursday, 7 July 2022 and go for seven weeks, which should put the end on 24 August if I counted days correctly while waiting. That means I have a few weeks to play before being tied to the zapping schedule.

Be well!


The photo is somewhere in central Kansas as storms were brewing. I didn’t see Dorothy or Toto. 🙂

Month 139 – Eligard Side Effects

It’s been almost six weeks since my very first Eligard injection on 3 May 2022, and it appears that some of the side effects are kicking in. There are also some other things that I’m experiencing that I’m questioning. But first, a little detour…

I just returned from a monster 16-day, 5,357 mile / 8,621 km road trip from San Diego to Chicago and back. Each Memorial Day weekend, my sister and her family gather at a small lakeside resort in southern Illinois, along with a few mutual friends and their families. As I hadn’t seen some of my family members in four or five years, I decided it was time to return.

Not knowing what the side effects from the upcoming radiation and hormone therapy will be, I decided to have one last giant road trip fling for what may be the next year or so. If it works out that I can travel again this autumn, great. But I just didn’t want to leave things to chance.

[The photo above is Trout Lake in the San Juan Mountains of Colorado.]

Now back to Eligard side effects…

Fatigue is the most prominent side effect. I’m constantly tired to varying degrees, and there are times where I just push through it and there are times where I simply give in and take a nap. Thankfully, these really didn’t start kicking in until the tail end of my road trip on my return to San Diego.

I’ve also noticed a slight increase in the number of trips I make to the toilet in the night. The last six to nine months, things had settled down to where I could sleep through the night or make one trip. Now, though, I’m in the one to three trips per night range, with one night being four trips. That certainly doesn’t help with the fatigue.

On the positive side, hot flashes have not kicked in yet. That’s great because things are beginning to heat up for the summer here in San Diego and the last thing I need are hot flashes when it’s 90°+ F / 32°+ C outside.

There are two other things that I wasn’t sure if they’re related to the Eligard or not.

First, I’ve had a dull ache in my groin and testicles and, second, I’ve had this general, low-grade musculoskeletal ache in the right side of my torso. Both seemed to kick in on my return to San Diego.

I emailed these symptoms to my urologist, asking if they could be caused by the Eligard, and she didn’t seem to think so. She ordered an ultrasound of my testicles to see what may be happening there (scheduled for Tuesday), and referred me to my primary care physician about the ache in the torso. She didn’t see any reason why either should delay the salvage radiation therapy (mapping scheduled for Thursday).

My biggest concern about the mapping on Thursday is the timing of filling my bladder and being able to hold it during the process. Often, when my bladder is really full, there’s a strong sense of urgency to empty it, and there’s little time for error.

That’s about it for now. More to come after the mapping and, as soon as I figure out why Adobe Lightroom (photo editing software) is acting up on my computer, I’ll get my travel blog updated with my trip’s photos.

Be well!

Day 4,178 – PSA Results & Stuff

I went for my pre-physical appointment blood work yesterday and was surprised to have the results back today. It used to take the VA two or three days to post them online.

In any case, my PSA climbed once again from 0.33 ng/mL on 11 March to 0.36 ng/mL yesterday, 18 April. PSA doubling time dropped from 14.4 months to 12.7 months, indicating a continued acceleration which makes sense.

I did schedule my mapping with the radiation oncologist and, in my discussions with the urologist about the PSA test, we agreed to reschedule my 10 May appointment into September after the salvage radiation therapy was completed. My schedule now looks like:

  • 21 April – Appointment with PCP for a lube, oil, and filter change.
  • 3 May – Eligard injection.
  • 16 June – Body mapping with radiation oncologist.
  • 13 September – Urology appointment

We didn’t set an actual start date for the zapping, but I suspect it would be a week or two after the mapping and it would last through July and into August.


My emotions in the last week or so have run the gamut.

I can’t seem to get it out of my head that, once I start down this path, my life as I currently know it will be gone. Much of that is probably unfounded and a gross exaggeration, as the rational part of me knows that the chances for long-term, quality of life-impacting side effects are minimal. Yet the emotional side of my pea-sized brain is dwelling on that and I can’t seem to shake it.

Of course, that leads me to anger over this insidious disease and the impact it has on your life. Aside from the aches and pains associated with my vintage, high mileage body, it’s difficult to reconcile that within me there’s the army of cells wanting to kill me even though I’m feeling generally well. The fact that you have to take drastic action to fight off those cells—again—makes the situation even more aggravating.

Part of this, too, stems from the timing. I retired at the end of October, and there are things I want to do and places I want to go. The uncertainty of not knowing how my body will react to the hormone therapy and salvage radiation makes me hesitant to plunk down $10,000+ for a bucket-list trip to New Zealand now that its borders are beginning to slowly open. Maybe by October (New Zealand’s spring), I’ll know whether I can endure a fourteen-hour flight.

I know that, like the countless men before me, I’ll get past this and adapt accordingly whatever the outcome. What choice do we have? In the interim, I’ll continue to play as my body under treatment allows me to play.

Venting session over. Thanks for listening, and be well.

Month 137 – The Decision

It’s been an interesting few weeks of conversations, concern, and coordination. But first a little digression that has been a factor in this whole process.

When I walked from my home to the radiation oncologist’s (RO) office back in mid-February, the nurse took my vitals and my blood pressure was elevated to the point it both surprised and concerned me (and the nurse). We chalked some of it up to “white coat syndrome,” and left it at that for that visit. Even if it was “white coat syndrome,” it warranted further investigation.

In early March, I started experiencing headaches and even some intermittent numbness of varying intensity on the left side of my face. A bit unnerving. I scheduled an appointment with the VA Urgent Care facility and they checked me out. My blood pressure was still elevated (but not as high as at the RO office), and she didn’t suspect that there was a TIA stroke going on. An MRI confirmed no abnormalities in my brain. (Sorry. I couldn’t resist this classic scene from Young Frankenstein. Anyhow…)

Obviously, trying to figure all of this out took precedence over scheduling salvage radiation therapy (SRT), but it’s also related to SRT and androgen deprivation therapy (ADT) because some studies have shown that there may be an elevated risk of cardiovascular events while on hormone therapy. With an elevated blood pressure and a family history it became a question that I wanted to pose to the RO.

RO Call, Tuesday, 29 March

You may recall that the RO told me that I could use the weekend to think about whether or not I wanted to proceed with concurrent ADT or just do straight radiation therapy. He said he would call me between 8 a.m. and 8:30 a.m. Monday morning for my decision. He didn’t.

However, he did call early Tuesday morning and apologized for missing the call on Monday. He said that the school his kids attend dropped their requirement to wear face masks, and they came home with a common cold and gave it to him. (Justification for continued mask-wearing.)

When we began the conversation, I told him that I was ready to do the concurrent ADT—in line with his thoughts—but I wanted to discuss what was going on with my blood pressure. He said that the cardiovascular risks were “extremely small,” especially with me scheduled to be on ADT for only six months.

I told him about my family history. My dad survived a heart attack at 54 and died in his sleep at 69. We never did an autopsy, but we suspect it was either a blood clot that let loose from major injuries he suffered in a auto accident sixteen months earlier or another heart attack that did him in. My paternal grandmother died at 69 from an aneurism on her heart, and my maternal grandmother died at 66 of a massive stroke.

I also let the RO know that I had been successful in losing 15 lbs. / 7 kg in the last few months and he reminded me that hormone therapy generally leads to weight gain if you’re not very careful.

After all of that, the RO’s enthusiasm for doing concurrent ADT waned and he was more inclined to suggest straight radiation by the end of the call.

At that point in time, though, I had not yet had my MRI—that was scheduled Wednesday evening—and I told the RO that I a) wanted to get the MRI results and b) talk to my primary care physician (PCP) about all of this once he had the results.

PCP Call, Thursday, 31 March 2022

In my call with my PCP, we agreed to put me on medication to help lower my blood pressure as I continue to lose weight. He also was able to give me the MRI results over the phone which surprised me. The technician told me it would take two to three business days to get the results, and he had them in about eighteen hours. Not complaining.

When I specifically asked him about the ADT and associated cardiovascular risks, he, too, said they were minimal. Even so, he was of the mindset to skip the ADT now mainly because of its other well-known side effects of hot flashes, enlarged breasts, weight gain, mood swings, fatigue, etc.

I thought that was interesting.

Urologist Call, Friday, 1 April 2022

Thursday, I emailed the urologist and update on all of this and asked for her insights. She called and we had a good discussion. She, like the others, said the cardiovascular risks were small and that the benefit of doing the ADT concurrent with the SRT was significant. She was definitely in the concurrent ADT camp.

When I spoke with the RO on Tuesday, one of the questions that I had was what drug would they use for the ADT. He thought the VA would use either Lupron® or Eligard®, so I confirmed that with the urologist. It would be a single shot of Eligard® that lasts for six months. Interestingly, she said the SRT could start about a month after the shot; the RO said he’d start SRT about two months after the shot.

I mentioned to her that I have an in-person appointment on 10 May and she suggested I could get the Eligard® shot then. Or, if I wanted to get it sooner, I could call for an earlier appointment.

Urologist Office Call, Monday, 4 April 2022

The Urologist’s office called to schedule the Eligard® injection. It’s set for 3 May 2022.

I did tell the scheduler that I had to have the final conversation with the RO next week, and that I would cancel the appointment if we decided to do the salvage radiation without hormone therapy. He was okay with that.

I will email the urologist to ask for a “before” PSA test to be done as a baseline starting point. I have some other bloodwork on order for my 21 April PCP visit, so I’ll see if the PSA can be added to that order.

Radiation Oncologist Call, Tuesday, 12 April 2022

One thing the RO told me when we last spoke was that he was going on Spring Break vacation with his kids, and wouldn’t be back in the office until 11 April. While he was out, I emailed him a summary of everything above.

We chatted for a good half hour this morning reviewing everything, and with the MRI results not showing anything, he moved back into the “leaning concurrent ADT” camp. His training is to tackle the cancer aggressively.

The Decision

Based everything, I’ve decided to go ahead with the concurrent ADT and SRT.

Barring anything goofy happening, the timeline going forward looks something like this:

  • 18 April – Bloodwork done for PCP visit, hopefully including pre-treatment PSA. (Still trying to get that added to the order.)
  • 21 April – PCP appointment.
  • 3 May – Eligard® injection.
  • 10 May – Previously scheduled in-person appointment with the urologist.
  • Mid-June – Perform body mapping.
  • Mid- to Late June – Start 7 weeks of SRT.

The RO said he’d have his team call me later this week to nail down specific schedules for the mapping and zapping.

Summary

I wish I could say that I was relieved at the end of the call this morning, but I wasn’t. This was committing to a course of action that I really wish I didn’t have to do. Life isn’t fair, I get it. I also get that it’s the right thing to do.

Wish me luck.

Day 4,153 – Radiation Oncology Appointment

The radiation oncologist threw a curveball that I wasn’t expecting at this morning’s appointment.

In a nutshell, he suggested doing concurrent androgen deprivation (hormone) therapy with the salvage radiation. That was not something that we discussed at our first meeting. The ADT would be for six months if done concurrently.

Doing ADT concurrently would give an estimated 10% benefit to the radiation and longer-term PSA reduction according to the doctor. But he also said that my case would also justify doing the salvage radiation alone and holding off on any hormone therapy until after the radiation is completed. He could argue for either option, but was leaning to the more aggressive concurrent therapies.

I asked about the ADT now lessening its effectiveness later when it’s needed most, and he said that six months of ADT would not really make the cancer hormone resistant.

We didn’t do the body mapping this morning based on this little twist, and that’s okay.

He offered to let me contemplate this over the weekend, and he’ll call me Monday morning to answer any further questions and see which option I would prefer.

I have to admit that the acceleration in my PSA increases is making me lean toward the more aggressive concurrent therapy.

If I choose the straight radiation, I’d go back to UCSD and get mapped and begin the actual zapping a few weeks later. If I choose the concurrent therapy, I’d have to go back to the VA San Diego for the shot and then wait up to two months (I have to confirm, I wasn’t in the note-taking mode) before starting the actual radiation back at UCSD.


Whichever option I decide, I learned this morning that I’m going to have to practice the art of bladder filling.

I was told for the mapping session that I should come in with a full bladder, so I started drinking water about an hour before the 8:30 a.m. appointment: about half a liter at 7:30 a.m. and another half a liter around 8 a.m., plus sipping on water in the waiting area.

By the time the nurse called me back to the exam room around 8:45 a.m., my bladder was about to burst and I had to run to the toilet. “Try to keep some of it in you,” she blurted as I scurried out the door. Yeah, right. By the time I was leaving after seeing the doctor (about 9:15 a.m.), I had to make another mad dash to the toilet. This has the potential to be pretty tricky.


On a somewhat related note, I needed a bit of escapism in advance of the appointment, and I noticed that the weather in Tucson, Arizona was going to be around 74° F / 23° C the first half of this week. I wanted to head over to spend some time in Saguaro National Park and Organ Pipe Cactus National Monument. It was a hectic trip, but I had fun and it definitely diverted my attention away from all of this.

If you’re interested, you can check out my report and photos here:

Saguaro National Park and Organ Pipe Cactus National Monument

Month 136 – PSA Results & SRT

Well, kicking the can down the road is no longer an option. My PSA shot up like an Apollo Saturn V rocket (yes, I’m dating myself).

Between 5 January 2022 and 11 March 2022, it jumped from 0.26 ng/mL to 0.33 ng/mL. That’s a 27% increase.

Yes, I had the PSA test done about three weeks sooner than I had planned. I had to see the doctor for another issue, and they did full blood work-up for that. They included the PSA test in that battery of tests, too, so I got my results earlier than expected.

Needless to say, I was hoping that this PSA test would have proved the 0.26 ng/mL to be an outlier, or at least to be consistent, but that wasn’t to be. It’s clear that the rate of increase is accelerating and that’s not good.

Based on that, I called UCSD Radiation Oncology this morning to schedule an appointment with the radiation oncologist to discuss starting salvage radiation therapy. It was a tough call to make on a Monday morning.

On a lighter note, the receptionist who took my call was great (answered on the first ring and went straight to her!—no menu tree to button-push your way through). I am not a morning person, and she was far too bright and chipper for a Monday. When I told her that I was ready to schedule radiation, she responded with a cheerful, “That’s great!!” “You said that far too enthusiastically,” I responded with my stomach in knots at having to make the call in the first place. Oh well.

The enthusiasm continued by scheduling the appointment with the doctor and the body mapping session back-to-back on the same day: Friday, 25 March 2022.

Oh. She gave me a homework assignment, too: Try to have an empty rectum and a full bladder for the mapping.

I will admit that part of me wants to press the doctor about having additional imaging done before we start radiation, but I also know that the cancer continues to grow while we’re waiting for the scan and its results. It doesn’t cost anything to ask the question.

Barring any unforeseen circumstances, the next chapter in this journey is about to begin. Wish me luck.