TL;DR? I'm still alive but what's keeping me alive comes at a cost.
March 12 marks two years since I got my cancer diagnosis. Stage 4, metastatic, terminal, etc. I'm not celebrating, obviously, although I'm certainly celebrating still being alive. I just thought this would be a good time for a kind of 'State of My Health' update. Almost all of this has been mentioned in previous blog posts, here and there, but this will hopefully take things out of the day-to-day details and provide an overview of where I am and what got me here.
The initial attack of a prostate cryoablation followed by intense chemotherapy, back in 2024, worked fairly well to fight the aggressive cancer that was taking over my body. I started this nightmare with a PSA = Prostate Specific Antigen of over 100. (No sign of anything like that at a checkup the year before.) After the initial and honestly brutal attack mentioned above, my PSA was reduced to 0.2, well on the sunny side of the "normal" range of 0-4. It took the better part of 2024 and a multi-frontal attack to get me there.
Unfortunately, during 2025, that number started to go up again, although thankfully not nearly as quickly. The culprit turned out to be some cancer growth in my prostate bed. (The cryoablation had killed the prostate and the cancer within it, so this could be considered "residual" if such terms mattered when you're talking about cancer.) In September and October of 2025, I underwent a course of double-dose radiation to the area in question.
Although we believe that this knocked out the remaining cancer in the prostate bed, my PSA was still increasing, ever so slightly, and approaching the "no longer normal" number of 4. A more recent scan revealed cancer growing in my left adrenal gland and maybe my right salival gland. The doctors interpreting my scan results postulated that the latter may simply be a blocked salival gland that lit up on the scan. They referred me to an Ear, Nose & Throat doctor to investigate that, while prepping me for radiation to the adrenal gland. After all the ups and downs of insurance pickiness and scheduling availability, I had my first radiation treatment to the adrenal gland yesterday and am scheduled to have a sonogram of the area of my salival gland tomorrow.
Hormone Deprivation Therapy
A type of chemotherapy that I started back in 2024 is still ongoing. Testosterone is the "food" this type of cancer feeds on, so they put me on two medications to keep my testosterone as low as possible. One is a time release injection and one is a daily oral medication.
- Eligard - Once every three months since this nightmare began, I go in to get an injection of a drug called Eligard, sometimes referred to as "chemical castration". This time-release injection is designed to stop the production of testosterone by my body.
- Aberaterone/Xtandi - These are very large pills that I take once a day to inhibit any hormone receptors for testosterone that "gets by" the Eligard. I was on Aberaterone since my diagnosis and just recently switched over to Xtandi a little over a month ago. Both drugs appear to do the same thing, my oncologist just didn't want my body to become complacent with the same drug.
The unfortunate side effect of trying to keep my testosterone as close to zero as possible is that I've lost a LOT of muscle mass, and I'm always tired. Sooo tired. Earlier in 2025, I was hoping that the extreme fatigue had more to do with how (infusion) chemotherapy had ravaged my body, and that I would eventually push past it and feel more energetic, but time has showed me that it has much more to do with depriving my body of testosterone. That I need to do for the duration.
The choice between hormone deprivation making me tired/weak all the time and letting the cancer take over and kill me is a no brainer, of course. It's just been really hard to get used to the "new normal" of never having much energy. On good days, I can muster enough to be active, but only for a bit. Expending energy on anything, I no longer get tired by degrees. I hit a wall instead. Fall off an energy cliff. I can expend energy on something and then, suddenly, I'm done. Absolutely wiped-out done. It's weird and it's frustrating.
I think about how I used to go out with crews from a local land trust and help with a prescribed burn across multiple acres of land. That sort of thing is now off the table. Can I handle what used to be a typical 3-6 mile hike in one of our forest preserves? Not now. I could probably handle kayaking but loading and unloading all the gear would finish me off before I even get in the water. Bike rides might be feasible because we own pedal-assist ebikes. I was able to take some nice rides in the summer of 2025 and seemed to do okay. No big 50-mile rides, by any means, but 10-20 are probably in the cards. Eventually.
I have a small home gym, and I work on building my strength that way whenever I haven't already done something that's tired me out. I'm getting some exercise and, hopefully, building back some of the muscle mass that I lost. It's all a pale shadow of how I was before my diagnosis but, again, I'm happy to be alive and to at least be able to do some living.
A more vain downside to depriving me of testosterone is that my hair doesn't grow much. More than a year after the nasty infusion chemotherapy and I still have no eyebrows or chest hair, my beard grew back to a stubble and seems to remain there, and I can go for months without needing a a haircut. When I do get it cut, it's just a matter of thinning bit here and trimming a bit there.
Dem Bones
The results of a full body scan that I had in August 2025 revealed not only the remaining active cancer that we needed to attack, but included a statement that has stuck in my head ever since I read it. "Patient has nonactive foci throughout his skeletal system." Basically, between my diagnosis and the time chemotherapy was able to take effect on the cancer growing in me, it had spread to my entire skeletal system. I'm grateful that what the scan saw was nonactive cancer, but it does make me worry about the possibility for some or all of it to go active again.
That worry aside, the spread of this stuff to my bones has weakened them significantly. So, another form of chemotherapy that's still with me are monthly shots of something called Prolia or denosumab. Essentially, this is the sort of medicine they give to people with osteoporosis. What it does is help strengthen my bones by pulling calcium from my bloodstream.
Since I do not have an overabundance of calcium in my blood in the first place, I need to take 1200mg of a calcium supplement, daily, as supply for the Prolia to put into my bones. There's already vitamin D3 in the calcium that I take, to help absorb it, but I also take vitamin K2 to assist the absorption. Everything except the Prolia is an over-the-counter supplement, but there's a whole lineup of pills I need to take just to keep my bones from breaking.
More Drugs
Some other daily drugs I can't seem to go without, and the afflictions they're fighting:
- Ropinerole - The infusion chemotherapy in 2024 left me with nerve damage. It's most noticeable in some neuropathy in my toes, occasional weird and unprovoked twitching here and there and, the absolute worst, restless leg syndrome. I swear, if RLS was something that could be controlled, it would be a very effective method of torture. My palliative care specialist prescribed Ropinerole for me and it's been very effective against RLS. Unfortunately, if I ever miss a dose, I am quickly reminded of how much I still need to take this daily.
- Pepcid/Famotadine - Early on, the stress brought on by knowing that I had terminal cancer gave me a peptic ulcer. I tried to battle it with mild antacids but I got no relief. My urologist told me that I could take up to 40mg of Famotadine (the active ingredient in Pepcid) twice a day and it seems to keep the monster at bay. Well, that and avoiding things like overly spicy foods and my beloved single malt scotch. (I haven't had a drop of scotch or any other hard liquor since I developed the ulcer, and it would be an understatement to say that I missed it.) I have occasionally been able to reduce the amount of Famotadine that I'm taking but one slightly spicy meal and I'm miserable again.
- Oxybutenin - It turns out that reducing hormone production for either sex will result in hot flashes. I had only ever heard of women having hot flashes but, if you mess with a man's testosterone, it can bring on hot flashes. I've dialed it in to where I only need one 5mg Oxybutenin per day to keep the hot flashes (mostly) at bay. As with the other two drugs above, if I try to reduce my dosage, the symptoms remind me of what a bad idea that is.
It's the Little Things
In my pre-cancer days, I would occasionally have a bad headache, inexplicable pain somewhere, weird stomach, and so on. Like many people, it would be a cause for concern for a little bit but, when it went away or at least didn't get any worse, I'd stop worrying about it. Since my diagnosis, any time this happens, I'm filled with anxiety about it. Is this more cancer growth? Is the cancer eating away at something that's causing this new discomfort? Is the cancer this? Does the cancer that? These days, if anything at all doesn't feel like it did the day before, I automatically worry that something terrible is happening.
So there it is; the state of me two years after my diagnosis. I've spent some time thinking that I'd eventually "get better" (not cured of cancer but at least physically back to some semblance of pre-cancer Rob) but, with no small amount of mental struggle about this, I'm forcing myself to try to find some sort of contentment in this "new normal". I'm trying to make peace with the idea that where I am now is quite possibly as good as it's going to get. I know from experience that fighting that -- continuing to think that I'll eventually return to the way I was before 2024 -- only brings anger and frustration. I don't want to be angry and frustrated with my days, no matter how many or few I have left.
