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.