PSA

Public Service Announcement? 

Among the many, many things that I have learned in 2024 is that PSA stands for Prostate-Specific Antigen. It's something that can be tested for in the blood and "high" PSA counts are indicators of prostate cancer.

A "normal" (no cause for concern) PSA count is anything less than 4.

When I had blood work done in January 31 of this year, my PSA was 27.5! For whatever reasons, my Primary Care doctor thought that it was an infection instead and started me on a course of antibiotics through February.

On March 1, I had another blood draw and my PSA was 98.7!! I have no doubt whatsoever that my PSA shot well above 100 after this, because it would be too many weeks before I would actually have anything that could be called a "treatment" of any kind. (Our health care industry moves only as fast as it wants to.)

However, it was the 98.7 PSA that the ball started rolling on all this with a meeting and eventual prostate biopsy with my urologist. Then came testosterone-lowering drugs. Then came drugs to help strengthen my bones because cancer had spread to them. Then came the prostate cryoablation. Then came meetings with oncology specialists. Then came chemotherapy, eventually, although I've only had one "round" at this point. 

What's the point of this five-month recap? Good news! I just got word that my PSA was down to 6. That's still above where it should be but it's a strong signal that everything we've been doing to attack this cancer has been working well. As silly as it might sound, a PSA of 6 is likely some of the best news I've had in months.

A Brief Reprieve

We went to the Beloit Cancer Center today to get my second chemo infusion. The first thing we were to do upon arrival was meet with the oncologist to see if he felt my body (based on Thursday's blood work) was ready for another infusion. Physically, I've been feeling pretty good, all things considered. However, the blood work revealed that my liver enzymes were off enough that my oncologist wanted to wait another week for the second infusion.

I did have blood drawn today. That and another scheduled draw on Monday should indicate whether those liver enzymes have stabilized. I agreed to try to increase my liquid intake after my oncology nurse said it would help my liver get back to normal. I'm ignoring the fact that it seems strange to be making and extra effort to help my body get well enough to then be intentionally poisoned again! 

The silver lining in all this is that I get another week of reasonably good health before the (potentially) next chemo treatment. There is a bit of rain in the forecast, but I'm already thinking about places we can go and things we can do, within the limitations of my new weakened "normal" of course. Heck, even if all I did in the next week was stuff around the house and yard, my lack of feeling ill still makes it a win. 

I just got a week off... I'll take it!

First Round Synopsis

On the instruction of my oncology nurse, I started keeping a daily journal of side-effects that followed the chemo infusions. I opted not to do that here because I wanted to be as matter-of-fact as I could and felt that was, at least potentially, too much information for this weblog journal. Since I already outlined my very bad week in a previous post, I see no harm in providing an brief overall synopsis of my first round of chemo here.

Days 1-2: 

I didn't really notice much change in the way I was feeling on the day of my first infusion, nor on the day after.

Days 3-7: 

This was a very bad five days. In addition to things that I expected (fatigue, body discomfort, weakness) I also suffered from various combinations of the maladies that I outlined in a previous post titled 'One Very Bad Week'. It was a terrible time, and one that felt like it would go on forever. It didn't, though...

Days 8-13:

I won't say I was "back to normal" during these days, by any means. I still suffered from many of the same side-effects, only to a slightly lesser degree. A few things, though, seemed to get worse during this period.

• Peripheral neuropathy (tingling in fingers, hands, and wrists)
  
• Peptic ulcer pain and discomfort (from stress)
  
• Headaches
• Head throbbing, heart pounding, and a strong feeling of "inner pressure"
• Hot flashes

Day 14:

This might have been a decent day, but I (unknowingly) messed it up. My oncologist had prescribed a 7-day course of a medicine that was supposed to help with my peripheral neuropathy, and I took the first of those pills the night before. When I woke up and started my daily routine in the bathroom, I felt incredibly dizzy and light-headed. It got so extreme that I had trouble making it down the stairs, even with a cane in one hand and the stair railing in the other. I spent most of the rest of the day on the couch, only getting up (quite unstably) to use the bathroom. The feeling dissipated as the day went on, but it also made me decide that I'd rather deal with the neuropathy than the dizziness. I never took another one of those pills.

Days 15-21:

Much more normal days. I still don't have much energy to go anywhere or do much of anything but now I can make the bed, help put dishes away, spend some time out in the garden, even take a drive now and then when the weather permitted. I had a strange thing happen on Day 18, though. In the evening, nothing I ate or drank tasted right. I could still taste, but nothing I ate appealed to me at all. Even my go-to daily green tea, which I've been drinking for years, tasted bad. I worried that this might be more of a shift than a glitch but, so far, it seems to be a glitch. My taste was just fine in the days that followed.

 

I've talked to both my oncologist and a palliative care nurse about the severity (and sheer number) of side-effects in those first two weeks after the infusion, so we'll see what we can do.

Hair Today, Gone Tomorrow

Although I've been stricken with more chemo side-effects than I would have liked, I was hoping to avoid the hair loss thing. I don't have a lot of hair in the first place but I kind of liked what I had and was not ready to become a bald guy.

Another hope dashed!

On Tuesday, May 21, I noticed that my hair was falling out. Not fast or by large clumps or anything, but my pillow and hair brush clearly had a lot of 2" length hair in them. I wasn't in any hurry to have it go away, so I took no action to speed up the process.

Through the days that followed, I kept losing hair. It very much seemed like I was losing it somewhat uniformly, with the fastest loss on the sides of my head above and just behind my ears. I could also feel it getting thinner when I touched my head.

By Sunday, May 26, the steady loss of hair became more annoying than the thought of not having any, so I asked my wife if she would help me shave it off. I decided not to go all shiney-bald for fear of it just being too much of a shock, so we used my beard and body hair trimmer with the 4mm attachment on it. I also trimmed my beard to match the length (can I still call it that?) of my new haircut. By the way, I'm losing beard hair, too, but not at anywhere near the speed with which the stuff on top of my head was falling out. Isn't that strange?

Side note: My wife said I now look like Peter Gabriel, who is a hero of mine. I sent my barber a selfie to break the news to him (I had an appointment for a trim in the first week of June) and he said I looked like David Gilmour. Both of those comparisons have helped me deal with the drastic change with much more acceptance than I think I would otherwise have had.

One Very Bad Week

The previous post was written in the evening of May 11, when I had already had a couple pretty bad days with chemo side-effects. At that point, I guess I was thinking that I might have 3-4 bad days and then start feeling better again. The reality of the situation is that I felt like shit from the evening of Thursday, May 9 through at least the end of Wednesday, May 15. During that time, we made a list of all the trouble I was having...

• fatigue (much more than what I've now gotten used to)
• overall, flu-like body discomfort
• muscle weakness but also weird muscle spasms
• restless leg syndrome
• peripheral neuropathy (extreme tingling of fingers and hands, seeming to increase in intensity each day)
• lips and nose tingling, like an allergic reaction
• extreme mouth dryness and sensitivity
• dry and itchy nose, sneezing, sometimes runny nose
  
• headaches, much worse than I normally get
• rash on forehead, scalp, and neck

In addition, my peptic ulcer has flared up again, likely from the stress of all this. 

On Wednesday, when I got up, I thought I might be feeling well enough to take a shower. (I've only managed to have the energy for one every couple days.) I suffered my usual energy drop at the end, coupled with more extreme neuropathy. Before I was able to dry off, I tried to get to the toilet to sit down. It didn’t help. I called out to my wife for help. Before she was able to get there, I ended up going down on the bathroom floor for fear of passing out. Neuropathy almost made my hands non-functional. Finally able to get up off the floor and dried (with a lot of help from my wife) after which the rest of the day was absolute shit. 

I'll need to find an alternative plan to keeping myself clean. Maybe washing my hair on separate occasions from the rest? Clearly, I do not have the stamina for a regular shower right now.

On Thursday, May 16, we had an appointment for some blood work at the UW Cancer Center in Beloit. A phone call to them on Wednesday about how bad things have been got us an appointment with my oncologist as well. I wasn't feeling too poorly that day but, unfortunately, something triggered my vasovagal response during the blood work. Once again, they thought it was much more and called the paramedics. It took a lot of convincing to get them to cancel that. I rode out the vasovagal response and eventually came back to “normal”. Unfortunately, the whole ordeal wiped me out for the rest of the day. No worse than my bad days, but not much better. 

Today is Friday, May 17. I don't think I would be having a terrible day today except for the fact that I didn't get much sleep last night. I just couldn't manage to get comfortable enough to fall asleep. So, not surprisingly, I'm really dragging today. I took a short nap in the afternoon, which had to help, but I still can't claim this one as a "good" day. Maybe tomorrow? ... Please?!

 

First Chemo Aftermath

By Thursday, I was starting to feel some of the effects of the chemo. I was much more tired and my mouth started feeling strange and sensitive. Things seemed to get worse as the day went on, although I had no idea what was about to hit me. 

Friday and Saturday, I felt incredibly uncomfortable all over. I'd liken it to flu symptoms but I don't think I've ever had a flu that made me feel like this! The mouth thing got weirder, so much so that it felt like there was something wrong with the muscles in there. I am trying to be careful not to allow my teeth to do any damage to my tongue and the inside of my lips. 

I was so very weak that I could not muster up the energy to shower on Friday. I just couldn't do it. Spent most of the day on the couch with maybe an hour or so on a lounge chair in the garden. Had to employ my wife's old cane to get anywhere, and even then it was very slow going. Put the cane to immediate use again on Saturday. Again spent about an hour in the garden but it's hard to claim that I enjoyed it. It was a nice change of scenery from the living room but I am literally uncomfortable in my own skin right now. Nothing I do or take seems to alleviate the discomfort. 

This is absolutely miserable.

With my wife's help, I managed to shower on Saturday. It felt like a full-body workout by the time I was done. Lots of huffing and puffing. Even the simplest shower tasks felt like I was working out. It feels good to have gotten clean again, though. The hot flashes continue, though, several times a day, and one was there for me as soon as I got back down from the shower. Nothing quite like breaking into a sweat right after you've showered, dried, and are "cooling off".

It's probably safe to say that this is what awaits me about 48 hours after each chemo infusion. What worries me is that it could even get worse. (How could it get worse?!) A nurse told me that even people who feel nothing at all in the days following a treatment will end up feeling pretty bad after their third infusion. Since this has hit me like a ton of bricks after the first infusion, I can't even imagine what kind of fresh hell waits for me in the days following my second or third infusion. 

When they talk about cancer patients "fighting for their lives" this has got to be a large part of what they mean. The last couple days have literally felt like I'm fighting to stay alive.

First Day of Chemo

Thankfully, the first session went without any setbacks. We arrived at the Cancer Center at 12:45 pm having already eaten a decent lunch and taken various and sundry pills and supplements with my oncology nurse's blessing. After a brief conversation (mostly about my anxiety with the process and its side-effects) she set up the IV and started some steroid medication "so my body wouldn't freak out" when the Docataxel eventually started. 

After that was given time to run through my veins, she started the Docataxel in the IV. She told me she was starting it very slowly and stayed there with us to make sure I wasn't having any adverse reactions. I'm grateful that there were none. Satisfied I was okay, she left us in the infusion room to tend to other patients. 60-90 minutes after that, my infusion was done, I was unhooked, and we were free to go. 

Interesting side note: It was rainy and stormy most of the day. At some point after I was all hooked up and stuff was coursing through my veins, my wife's phone got a severe weather warning notification. Then another one. Then we heard someone at the nurse's station listening to a National Weather Service warning and overheard the word "tornado". We looked at each other and wondered if we were going to be ushered into a basement or some windowless maintenance area of the Cancer Center due to an approaching tornado! 

Thankfully, nothing like that came to pass, and I was able to stay put and finish the treatment. 

So, all things considered, the day went pretty well. (Well, that is, for someone with Stage 4 cancer getting a chemotherapy infusion. Don't let any matter-of-fact reporting on this blog lead you to believe that such a nightmare scenario isn't pretty much always on my mind.) I felt pretty tired and somewhat achy after we got home but soon realized that, although I had taken a variety of supplements and pills before we left, I had NOT taken any ibuprofen or acetaminophen. Taking a few ibuprofen at that point seemed to help. At the end of the day (now) I'm not really feeling much differently than I was last night at this time. 

Warnings from both nurses and friends indicate that I might start to feel some of the effects of this chemo in 3 to 7 days. The list of possibilities there is long and ugly. I'll be looking (apprehensively) for changes in how I feel in the days to come. I'll try to document changes here on the blog without going into too much detail about physical issues, especially the gastronomical ones.

Also, starting tomorrow morning, I will begin taking the oral part of the treatment; a med to further decrease testosterone* and some prednisone to keep my body from "freaking out". There are bound to be changes in my body's reaction to that stuff, too. We'll see. 

*Another side note and I'll shut up. I'm already experiencing a half dozen or more hot flashes throughout the day and night (mostly day) from the testosterone-lowering injection that I got a month or so ago. I'm having one as I type. I can't imagine what it's going to be like after a second testosterone-lowering medication enters my system! Our daughter and a good friend who has gone through chemotherapy treatments already have both given me neck fans and, boy, am I making use of them!

Chemotherapy 101

After several back-and-forth phone calls to the Beloit Cancer Center and a specialty pharmacy called CareMed, we're now lined up for my first chemotherapy treatment. I go in to the Cancer Center tomorrow for some "baseline" labs they wanted to before I start. This will also be the first time anyone tries to use my chemo port for anything, so it will essentially be a test to see if it works.

If it does, and everything else goes according to plan, I am scheduled to have my first chemotherapy treatment on Tuesday, May 7. I'm looking forward to the next major step in killing off this cancer, but I'm also anxious about going through some of the horror stories I've heard about chemotherapy. Covering possible side-effects with an oncology nurse this afternoon didn't ease my mind much, either. 

These names don't mean much to me (yet?) but here is my initial prescription: 

• Docetaxel (injection) - slows cancer growth
  
• Abiraterone acetate (tablets) - hormone (testosterone) blocker
  
• Prednisone (tablets) - a steroid which decreases inflammation and slows down an overactive immune system