Nothing ... then EVERYTHING

In recent updates, I've mentioned that almost nothing happened (in terms of both diagnosis or treatment) in November, December, and the first part of January. This brought some significant depression with it since we all knew that some cancer was still growing, and that my cancer is an aggressive kind.

Things started to move with a PET CT (Positron Emission Tomography and Computed Tomography) scan on January 14, bloodwork on the 22nd, and an appointment with my oncologist on the 26th. Then, in the first week of February, it was like the medical floodgates opened...

• M 2/2 - 6 month check-up with my General Practitioner
• Tu 2/3 - Visit with dentist to have a cavity filled
• W 2/4 - Meet with the cardiac surgeon who installed my chemo port*
• Th 2/5 - Face-to-face consultation at the Cancer Center about a new med 
• F 2/6 - Double surgery* to remove a chemo port and install a new one
• Sa 2/7 - My monthly Prolia injections for bone strength

*Wednesday's appointment with the cardiac surgeon ended up taking the whole afternoon at the hospital. At first, upon visual inspection, he did not feel there was anything wrong with my port, despite it being very stubborn at the last 2-3 blood draws and a scan indicating that it might be leaking. As a "let's just make sure" measure, he sent me downstairs to have a scan done specifically of the port after a tracer was injected. 

I could tell that something was up because I overheard the person doing the scan using words like "leak" and "occlusion". I was sent back up to meet with the cardiac surgeon again, where he informed me that the old port would indeed need to come out and that he would install a new on on the other side of my chest. He said he wanted to do this on Friday but, since nothing really moves that fast in my medical universe, I took that with a huge grain of salt.

He was serious, though, because he started having us run all over the hospital for various pre-surgery stuff like a COVID-19 test and a (second) chest x-ray. Our original appointment was for 1:30 in the afternoon but we didn't get out of that hospital until around 5 pm. On one hand, it was great that they could just have me do all that stuff while we were already at the hospital, but it was also frustrating that an appointment that should have been about an hour ended up being over three times that.

We had a 7:30 arrival time for surgery prep. Even though I am allergic to mornings, I was a good boy and showed up on time. Well, okay, mostly thanks to my dear wife. The surgery was scheduled for 9 am but I didn't end up going in to surgery until around 10 am. Once the anesthesia took me to la-la-land, they removed the faulty chemo port inside my chest on the right side and installed a new one on the left side. It must have all gone reasonably well because I'm still here to type about it. I think we got out of there around noon, after which I just convalesced (and slept) on the couch for the rest of the day. 

 

Last week was definitely a case of "be careful what you wish for". I went from being depressed that no one was doing anything for months to, "Holy shit! Can we please slow down?!" I've been very tired since. I know part of that is my body recovering from surgery and using energy to heal the wounds, but I'm certain that part of increased fatigue is just how much medical stuff was packed into that week. 

My new med arrived on Thursday of that week, but I decided to wait to take it until the day after the surgery. It's a new hormone receptor blocker, so that is probably contributing to my fatigue.

One more thing. In my last post, I mentioned having an appointment on February 9 for a CT simulation, which is kind of like a mapping session prior to radiation treatments. Treatments typically begin a couple weeks after that. We got a call from the Cancer Center that they needed to cancel that appointment and come in for a consultation appointment on February 18. We wanted to get put on the books for the CT sim on the 18th, then, so we wouldn't have to wait even longer. (We knew by December that we had more cancer to kill. We suspected it as far back as October.) They've definitely got me down for that consultation on the 18th, but I've got my doubts as to whether or not that CT sim will also happen that day. Time will tell. 

If the CT sim happens on the 18th, there's still a chance I could start radiation by the end of February. If not, we'll be well into March before I can start treatments. This will be about three months after we saw a need for them.

Quick Update

Just a quick update with news from the appointment with the oncologist. He no longer feels that my rising PSA is coming from a mutation of the original cancer. That's good, because the very idea of that seemed like a whole new can of worms to me. My latest PSA is 4.46 so it's still rising but (thankfully) not yet exponentially like it was in 2024.

My latest scan showed two potentially active (cancerous) areas: my left-side adrenal gland and my right-side salivary gland. The oncologist as well as the MD who first read my scan results suspect that the salivary gland issue might have more to do with my chemo port leaking. So, here are our next steps...

- 1 -  My oncologist wants the cardiac surgeon who put in my chemo port to evaluate what's going on there. I've now got an appointment with him on February 4. After this evaluation, I would most likely be looking at surgery to repair or replace the chemo port. If the surgeon decides that the problem is not a leaky port, we'll have to re-evaluate and possibly start radiation treatments up there as well. (My chemo port is in my upper chest, above and to the right of my heart, left of my shoulder.)

- 2 -  I have an appointment with radiology on February 9 to have the CT simulation of the adrenal gland area. This gives the radiation oncologist a template to accurately target the specific area to be irradiated. It's how they decide what to program into the machine, basically.

- 3 -  Some time in the weeks after that, I should start radiation treatments to the left adrenal gland. This is assuming, of course, that my insurance company's AI decision maker* doesn't deny the request. Six months ago, I wouldn't have been concerned about this.

- 4 -  My oncologist also wants to change one of my medications. I am currently on two medications to keep my testosterone as low as possible. One is a timed-release injection that I get every three months which works to stop my body from producing testosterone. The other is a pair of large pills that I take every morning to block the cells from being able to use any testosterone that may be in my system. This latter med is called Aberaterone and my doctor suspects that it might not have the same efficacy that it once did. That's the one we're changing, assuming my insurance doesn't deny it. (It should be a simple, lateral move, but who knows if the AI currently making all my health decisions* will see it that way.)

That's the plan. 

I have to give kudos to my oncologist because he always wants to get stuff done right away. He insisted I get the CT simulation appointment on the calendar before I left today, he sent a message to my cardiac surgeon and put in the new med request after we left this afternoon. He has rarely been the reason I have to wait on things. The insurance and other doctors appointment schedules seem to be where things get delayed. We'll just have to see how quickly (or not) the aforementioned plan plays out. More on all that later.

 

*I asked my oncologist, point blank, if he noticed any uptick in how often he had to submit appeals for things denied by insurance companies. He said it's happening now far more often than it ever has. Our health insurance companies definitely have their AI set to deny. I would imagine this will be standard practice across the board within just a few months, if it's not already. For everything we pay to these corporations they should, at the very least, be using humans to make our health care decisions. 

Ninety Days of Cancer Limbo

It's been a while... 

Unfortunately, especially for anyone looking to these posts to catch up on my situation, I kind of abandoned this blog for the past couple months. It wasn't intentional but three factors have played equal roles. First, medically speaking, things have kind of been in limbo with very little forward movement, much to my frustration. In addition, I got pretty depressed by it all and also so tired of talking about everything that was wrong with me. I still kept a handwritten journal with daily entries, though, so I'll attempt to catch up with entries that I made there.

My last blog entry was from mid-October and I was somewhere around the middle of a month's worth of fairly intense (double dose) radiation treatments. I wrote about being tired a lot, but also that the days were punctuated by random days with more energy. As the treatments progressed past what I had written here, the fatigue got worse, as did the internal side-effects of the radiation. The better-energy days still occurred, but less often. My (paper) journal contains a lot of entries about being "wiped out" during the second half of that treatment schedule.

After my last blog entry, my wife started driving me to the treatments, just to take something off my plate. It was a simple gesture but so very much appreciated. One aspect of the radiation therapy that I didn't expect to grow to despise was how I needed to hyper-hydrate myself before each daily treatment. No exaggeration here: I had to drink about 40 ounces of water and not get rid of it during the two hours prior to a treatment. There were times when I was literally lying on the table inside the tube, feeling like I was going to burst. I never had any accidents but I did have a couple close calls. The trouble was not only how much water I was ingesting but also how all the swelling "down there" was making me feel like I had to "go" even when I wasn't actively hydrating.

I should note that this need to be over-hydrated is somewhat unique to prostate radiation. It was necessary so that my bladder wasn't also radiated during treatments.

In my (paper) journal I wrote about how, "bodily functions have become increasingly difficult, uncomfortable, and immediate." I won't go into any more detail but suffice it to say that October was a very uncomfortable month. My last radiation treatment was on October 22 but all those uncomfortable side-effects stayed with me for several weeks to a month later. (I was quite relieved to be done with the hyper-hydrating, though.)

At the end of the month, I had some bloodwork done and met with my oncologist about the results. My PSA had slowed from its pattern of tripling every time we checked it but it had still gone up from the level that prompted the recommendation for radiation treatments in the first place. My oncologist suspected that the increased PSA might be a reaction to the radiation that he called "tumor flare" and asked me to have labs done again in a month to see how things might have changed. Due to the Thanksgiving holiday and subsequent scheduling issues, I wasn't able get in again for bloodwork until December 2 and we met with my oncologist on December 4. My PSA was 3.27 at the end of October and continued to rise to 3.54 when we checked again in early December. The rise wasn't alarming but it was still a rise. Cancer was still growing somewhere.

The oncologist mentioned several possible issues, including a mutation of the original cancer that wasn't generating PSA as rapidly. Since he was just hypothesizing he insisted that, before I left that day (12/4) I have some labwork done that was different and more specialized than our usual focus. He also put in a request for a different kind of PET scan than I had previously. My insurance company denied that at first (it's a very expensive scan) which freaked me out. Thankfully, my oncologist appealed the denial and it eventually went through. 

From the 50(+) Yard Line

On Wednesday, I had my 10th radiation treatment of 20, so I thought this would be a good time for a brief update.

Week 1 (partial) 

Previously, I mentioned that my radiation oncologist prescribed 45 daily radiation treatments, but my insurance company would only approve 20. The workaround turned out to be that I'd get twice the radiation at each session. I don't know how typical that is but the only red flags I could see was that I'd be hit with side effects sooner and more intensely. I started on a Thursday, so really didn't feel much of anything leading up to that first weekend after only two treatments. 

That Thursday, by the way, was packed with stuff that was already on the calendar before I got the call about a radiation schedule. I mention this because I think the stress of that day, combined with the anxiety of starting radiation, caused me to have a very fatigued Saturday. Here I was, looking forward to what might be my last decent (health-wise) weekend of October, but Saturday proved to be a rude awakening. 

I felt completely drained of energy on that first Saturday. I spent a fair portion of it on the couch, managing only laundry and a shower for activity. Expecting the same again on Sunday, I was pleasantly surprised to have enough energy to spend some quality time in the garden with my wife and work in the barn (workshop) for a little bit. 

Week 2 (5 treatments)

Unfortunately, and I could see this on the calendar, the following Monday and Tuesday were packed with appointments, meetings, and chores in addition to the radiation treatments. Most of these had been scheduled before I had a radiation schedule. By Wednesday (October 1st - treatment #5) I could feel some (more*) fatigue kicking in. The rest of the week was up and down, sometimes feeling quite tired and sometimes feeling it only slightly.

*I say "(more)" fatigue because they've still got me on hormone blockers, so feeling tired and weak became my "new normal" long before anyone started talking about radiation. Then, of course, people started talking about radiation because the cancer growing again. That alone has a noticeable weakening effect. My Fatigue Trifecta was complete with start of radiation treatments.

So far, so ... acceptable, and the weekend (without radiation) was right around the corner! 

Little did I know that I would spend almost the entire weekend on the couch, completely zapped of any energy. Sunday was worse than Saturday, and included a 6 a.m. wake-up call for some intense lower abdomen pain and no small amount of nausea. It's also important to note that my body clock thinks 6 a.m. is the middle of the night. Even after managing to get back to bed (with a lot of help from my dear wife) I eventually woke up exhausted and carried that with me the rest of the day.

My "free" weekend was officially a bust, although the creators of several good woodworking videos on YouTube might not feel the same.

Week 3

• Monday - RT (radiation treatment) #8: Completely wiped out. Couch-bound incapacitated.
• Tuesday - RT #9: Tired but much more energy than the previous 3-4 days.
• Wednesday - RT #10: Completely wiped out again. Truly next-level fatigue. Difficult-to-find-the-energy-for-a-shower kind of fatigue. Brought my cane back out from last year. Went to bed hours earlier than normal. 
• Thursday - RT #11: A bit more energy than Wednesday but not by much. Went to the RT then did almost nothing else the rest of the day. I had to skip a meeting because my brain couldn't hold a thought to get through a sentence in addition to the way my body felt. (Mental fatigue as well? oh yay)
• Friday - RT#12: Today. Each Friday, I am to meet with my radiation oncologist. I'm grateful for that because it allows me to check in and for my doctor to trouble-shoot side effects. However, I noticed that I felt extra crappy after the treatment today. By the time we were talking to the doctor

 

If anyone happens to be re-reading this and notice that this entry isn't the same, it's because I accidentally published an earlier draft but don't see any way of getting my final draft back. 

The Nuking Has Begun

I'll begin by laying out some recent events. As I have mentioned, my PSA (prostate-specific antigen) has been on the rise, albeit slowly, for most of 2025. The main reason it's going slowly is because I remain on hormone blocking drugs since this cancer thrives on testosterone. I get the PSA checked every 3 months, though, and it was at least tripling every time we checked. It went from 0.2 in January to 0.65 in April to 2.14 in July. For most people, even that last number would still be considered in the "normal" range of 4.0 or less. However, given my history with this disease, it was only going to continue to rise ... exponentially. It's probably at least 6.0 right now, although I not scheduled to have it checked again until the end of October. 

Anyway, that recent timeline... 

• July 28 - Labs revealed the PSA of 2.14 and my oncologist decided that we need to take action.
• August 13 - I had an expensive PET-PSMA scan done to locate the active cancer. 
• August 20 - We met with my oncologist to go over the scan, at which point it was decided that it was localized enough that we would hit it with radiation instead of trying more rounds of chemo.
• September 5 - Surgical procedure to have a gel put in to protect "other things down there" from radiation.
• September 8 - Went in for something called a CT simulation, where they map things out in order to be able to target the cancerous area and minimize the effect on nearby parts that aren't cancerous.

Then came several weeks of nothing, with us waiting on word that I could begin radiation. They told us it would be "a couple weeks" before radiation started and claimed that this was primarily to wait for insurance approval. However, being proactive, we noticed that my insurance had approved 20 treatments within days of the request. We called to get radiation scheduled sooner than later, but were told that it was still going to be "a couple weeks" without any concrete explanation. At one point, someone actually said, "That's just the way it always goes."

This waiting period came with a somewhat unexpected truckload of anxiety and depression. I was concerned, with the cancer continuing to grow, that it might start to spread again before we started any radiation treatments. Mid-September marked 8 weeks since the PSA indicated we needed to take action, and 6 weeks since my PET-PSMA scan located where it was active. In my previous post, I wrote that the PET-PSMA report indicated I had "nonactive foci throughout [my] skeletal system." Would that make it easier for the cancer to spread? I asked, at least twice, but no one was willing to give me an answer to this question. The silence just added to my anxiety.

I feel like most of September was this anxiety-filled, depression-riddled waiting game. I realize now that I have a tendency to circle the wagons when I get down about something. September saw me pulling back from social media, not writing letters, ceasing participation in many things, as I fell into a funk of depression. The medical professionals were in such a hurry to have me do the various procedures necessary to start radiation and then... nothing. Even though I have now (just) started radiation treatments, I still have no idea if this stuff has metastacized. If it has, radiation to one spot isn't going to knock it out. 

On Wednesday, September 24, I was finally scheduled to go in for my first visit with radiation, where they did another kind of "mapping" session to see how well things lined up with the results of the CT simulation on the 8th. The following day, September 25, I had my first actual radiation treatment. This was just under two months after my oncologist said we should take action. "Taking action" means something very different in the medical field than it does to me. 

My previous post mentioned that my radiologist prescribed 45 treatments. It turns out that my insurance would only approve 20 treatments. This didn't do anything to change my view of insurance companies as gatekeepers who eschew genuine medical needs in favor of monetary decisions. (How did these for-profit corporations become such pivotal linchpins in everyone's health care?) One might see cutting the number of treatments in half as a good thing, and it will mean I am finished with radiation sooner, but my radiologist plans to give me the same amount of radiation in 20 treatments as I would have gotten in the 45. This means that my side-effects are likely to be more intense. 

Time will tell how hard this will be. I'm feeling a bit more fatigued now than before radiation started, which is noteworthy because I was already tired and weak then. Flashbacks to barely able to take showers during chemo have loomed prominently in my mind. I'm hoping for the best but anxious about it being just the opposite. Throughout this nightmare, I feel like the "possible side effects" have been soft-pedaled to me. As I say, though, time will tell. 

I'll check back in after a couple/few weeks to update how it's going.

A beautiful 2-3 foot long eastern fox snake that was hunting in our garden.

Into Battle Once More

This is an update on some of the unknowns I wrote about in my previous entry. The results of my second PET-PSMA scan have come back and we met with my oncologist on August 20. 

My first PET-PSMA scan occurred on March 27, 2024, prior to receiving any form of treatments to battle the cancer. The scan showed a concentration of cancer in my prostate, plus metastasis (spreading cancer cells) in my hips, a spot on my ribcage, a spot on my shoulder, and a spot on my spine. 

I'm bringing this back up because I was shocked to find that this disease spread like wildfire throughout my skeletal system after that scan until the chemotherapy and hormone suppressants started to take effect. The written report from my second scan (8/14/25) states the following: "Widespread, nonactive foci of osteoblastic metastasis now noted throughout the skeletal system which has significantly progressed since previous study." Of course, the word "nonactive" is the imperative there, referring to the state of the cancer. I sure hope it stays that way because, apparently, my entire skeleton is riddled with "nonactive" cancer cells. If those ever become active again, I believe that will be the end of this story. 

I'm trying, very hard, not to think about that. 

If there was "good" news from the latest scan, its that the cancer that's currently active was found only in my prostate. My oncologist feels that we can avoid more chemotherapy (for now) and hit the focus of activity with radiation treatments. I was glad to hear that, but was taken aback when my radiologist said that we would need 45 radiation treatments, one each day of the week (Monday through Friday) for nine weeks. It's not like there aren't any side-effects from radiation, so this is going to take me down several notches. I keep reminding myself that at least they're not recommending chemo, but that thought only helps a little. 

At of the time of this post, we have yet to schedule those radiation treatments. There are a couple things that need to happen first. On September 5, I'm scheduled to have a procedure where they inject a kind of gel that's supposed to protect certain vital functions "down there" from being irradiated. Then, on September 8, we have an appointment for a CT Simulation, which is where they make a map of the area to focus in on specifically where they want the radiation to hit. Shortly after that, I assume, I'll begin the treatments.

Emotionally, I'm not nearly as relieved to set chemo aside as I thought I would be. To be clear, I am relieved, but I have this sinking feeling that nine weeks of daily radiation treatments is going to take its own kind of toll on my health, such as it currently is. I suppose it boils down to the fact that I was only just starting to feel partially recovered from last year's intense chemo and now I have to somehow mentally prepare to take several steps backward. 

One could argue that, hey, at least I'm still alive, but the quality of my life pales in comparison to where I was in 2023 and earlier. I can only hope that, by the time the radiation treatments have ended some time in November, I can finally start taking steps toward living a more normal life. That's the hope I'm clinging to, anyway. 

A ruby-throated hummingbird foraging for nectar in our garden

Here we go again?

(What you can't really see here are the dozens of pollinators flitting around those flowers.)

 

Since I ended chemotherapy, late last year, I have "check-up" appointments with my oncologist every three months, with bloodwork done a few days before. I mentioned in my last post that my April bloodwork revealed my PSA (Prostate-Specific Antigen, the blood marker for prostate cancer) had gone from 0.2 at the start of this year to 0.65. While that is still well within the "normal" range for PSA (4.0 or less) it worried me because it had tripled in three months. My oncologist told me not to panic, and that we'd only start talking about more treatments if it got up past 2.0.

Three months after that, my PSA registered 2.14, meaning that it had (more than) tripled again, Cancer was clearly still growing, somewhere, and we should start to investigate where and how much. My oncologist put in an order for an expensive PET-PSMA scan, something my insurance balked a bit about when one was requested at the start of this nightmare in the spring of 2024. I expected more balking this time, but the scan was approved right away and we were able to schedule it within a week. I just had that scan on Wednesday (8/13) but won't know the results until we meet with my oncologist next Wednesday (8/20).

One thing is clear: I will need more treatments.

The thought of this depresses me. Although I've been trying to exercise and stay as active as I am able, I'm still nowhere near what anyone could call "recovered" from the cancer-and-chemo induced trauma from last year. The exercise has been helping, and I do feel like I've been getting stronger, but I still have numerous maladies and physical limitations. For example, on any given day when I have some sort of event on the calendar, that one thing is about all I can do that day. I haven't had a day when I've felt up to doing two or three activities (okay, maybe super low energy level activities like doctor's appointments) since before my diagnosis. Also, when I do have the energy to participate in something more enjoyable than a medical appointment, I'm only good for a couple hours before I wear out.

I've been tolerating this because, well, because I don't have much of a choice. Beyond that, though, the thought that has been keeping me feeling positive (most of the time) is that I am s-l-o-w-l-y getting better. In my mind, better days were ahead, I just needed to help bring them on by exercising and staying positive. Throughout most of June and July, I've been feeling like I could see the "old me" on the horizon, and it was a welcome sight to see. The regrowth of some of the cancer and subsequent discussion of more treatments has pretty much drained me of any such positive outlook. 

In the past few weeks, my energy level has gone way down. I find more difficulty in getting out of bed and, much more often than in the preceding months, I have trouble motivating myself to do exercise on my little home gym. I feel so tired, most of the time, that I don't even feel like trying to do things. At first, I was writing this off as the fault of cancer regrowth, but the more my wife and I talk about it the more I realize at least some of it is rooted in depression.

Whether or not I have to go through chemo again (an absolute nightmare last time) will be determined by my oncologist's take on the scan I just had. We've already talked about this, pre-scan, and we're all hoping that the growth is happening in a single location (or two) that can be irradiated. I'm also somewhat encouraged that this oncologist -- a different doctor than the one with whom I started this nightmare journey -- is up on current research and willing to discuss a variety of treatment options. 

Still, I think I spent the first half of this year thinking that I was on a slow road to recovery. I could see it and I could feel it. If I needed more treatments of any sort, it would be a couple years away. 

Not, as it turns out, right now.