The Good, the Bad, and the Ugly

I haven't updated this blog/journal since the 1st of February so, now that I'm six months out from chemotherapy, it seemed like a good time for an update. I've had just as many ups as downs since my last update, which is what prompted me to steal my title here from that old spaghetti western starring Clint Eastwood.

The Good:

• My physical therapy sessions lasted from January through March, and our main focus was on balance, lower body strength, and mobility. I was a good boy about this, attending nearly every scheduled session (usually twice a week) and being fairly diligent about my homework exercises. It helped a lot. I won't claim to have the balance that I did before cancer but I feel a lot better about all aspects here.
  

• Some time during my PT sessions, I started incorporating some upper body exercise with a Total Gym that we bought just before my diagnosis. It can be easy to let an entire day pass without actually doing any of my TG exercises, but I continue to try to get in at least 2-3 per week. 
  

• My wife and I (and sometimes daughter and I, when she has the time to visit) have taken a number of nature walks/hikes this year, including several during the spring to check out ephemeral wildflowers growing in the area.
  

• I've been able to cautiously participate and/or volunteer for more events with local nature organizations. It's not nearly at the same level as before I got sick, but it feels good to be part of the world again after spending so long stuck at home.

• After two failed attempts (due to weather conditions, mainly) I was finally able to go downstate to visit my daughter for a weekend in early May. She had several day trips planned for us at natural areas down there, and I had enough energy to participate in everything she had planned. 

• This past Tuesday, May 13, my wife and I went on our first bike ride in two years! It was a short one, only a little over 5 miles in total, but we did it and had no adverse effects from it. It sure was nice to get out on our bikes again. We're already starting to plan a 7-mile ride to see how that goes.

Among the Virginia Bluebells display at Deer Run Forest Preserve

Kinnickinnick Creek Nature Preserve with our friend Lisa (and Rocky!)

With my daughter at Henry A. Gleason Nature Preserve

Stopping for lunch at Hononegah Forest Preserve with our friend Rodger.

 

 The Bad:

• At some point this year, I was excited that I was able to hike a mile to a mile and a half on unpaved paths. I tried a 2-mile hike with my wife once, and I could do it, but started dragging about 2/3 of the way. (Literally dragging. My wife says she can see me dragging my feet when my stamina runs out.) The "bad" part about this is that, irrespective of any other exercises that I'm getting, I'm still at that same exhaustion point. My stamina has not improved much at all.

• At my 6-month oncology appointment, my PSA had gone up slightly. It was 0.2 and has gone up to 0.65. My oncologist doesn't feel this is cause for alarm, and said that many PSAs fluctuate. The range considered "normal" is 0-4, and my wife keeps reminding me that 0.65 is still under 1. I can't help but worry that it went back up, though. In purely mathematical terms, it more than tripled. I'm trying to find consolation in what my oncologist and my wife are telling me, but the rise still makes me nervous.

 

The Ugly:

• Toward the end of April, I noticed that my right ankle had swelled up. There was no pain or bruising associated with it, it was just noticeably swollen. After looking for some answers online, we realized that this may have been some form of edema. I was already rather casually monitoring my salt intake because I have (for years now) high blood pressure, but we started scrutinizing that even more carefully. We also bought some compression socks, which helped quite a bit, and I started elevating my foot and leg whenever we were just sitting in the living room together. I haven't gotten rid of it yet, but it's down to "barely noticeable".

• In the evening of May 9 (one week prior to my writing this) I started feeling my heart not beating normally. It wasn't racing or skipping beats because I've had experience with both of those. It's hard to describe, but I kept saying that it felt like my heart was tired, as though it was struggling to beat normally. When it happened again the next evening, I mentioned it to my wife and she decided to keep a record of it happening. Unfortunately, it happened every day since then, and has started earlier in the day each time.

• On Wednesday, May 14 (the day after our bike ride mentioned above) I woke up completely exhausted -- drugged-like exhausted -- and my aforementioned heart issue had started even before I got out of bed. We decided to call my "regular" doctor in hopes that maybe we could make an appointment. He advised us to go to Immediate Care, which we did. We spend four hours there that day, with them subjecting me to bloodwork, chest x-rays, EKG, and a CT scan. None of the results raised any red flags so the parting advice we were given was to make an appointment with a cardiologist.

• That afternoon, we asked my GP for a referral for a cardiologist. He gave us two names. The earliest we can get in with either of them is early September! It's as though the cardiologists feel we just want a casual social visit. By September, this issue will either go away on its own or get so bad that we'll need to go to the Emergency Room because it got much worse. As I type this, my heart is not beating regularly, I don't know what's causing it, and the medical professionals are just shrugging their shoulders.

 

Sorry to end with the ugly. I want to emphasize that I'm very glad to still be alive and I am well aware that I'm doing better now than I was last year at this time. I'm just frustrated, first that my recovery is generally so glacially slow, and second that the edema and heart trouble have presented genuine setbacks. I was taking baby steps on a ramp that was almost horizontal, then somehow fell off the ramp with these new issues in May. 

 

I'd like to think that moving my body and eating better food are helping me, even in light of the setbacks, but I definitely struggle with motivation right now. I've been a very good boy since ending chemo, so why am I now taking several steps backwards? Has moving and eating better helped me? Right now, it doesn't feel like it.

Post Chemo Check-in

It has been four months since my last chemo infusion on October 1 and three months since we've checked any of my bloodwork. This update comes courtesy of a busy week, though, with labs and physical therapy on Tuesday, meeting with my oncologist on Wednesday, then an appointment with my GP as well as PT on Thursday. 

Anxiety ruled the days leading up to this. It would be the first time since starting chemo that my PSA (prostate specific antigen, the cancer "gauge" for me) wasn't monitored monthly. All sorts of thoughts of this aggressive cancer rearing its ugly head in the last three months was starting to weight heavily on my mind. If that PSA was back up, it would probably mean a 2025 that mirrored my 2024, which was the worst year of my 62 years on this planet.

I tried to console myself by reminding myself that I was still on the hormone drugs designed to keep my testosterone down, and that Ground Zero for the cancer (my prostate gland) had been nullified through the cryotherapy that happened at the start of all this. Still, especially in the days leading up to my oncologist appointment, I was pretty nervous and couldn't stop thinking about the worst case scenario. My wife admits to feeling similarly.

I am very pleased to report that my PSA is now down to 0.20, which is 0.06 lower than it was at the end of October! I'm under no illusion that my cancer is now somehow "cured", especially since they reminded me all last year that my cancer is incurable. However, if what we're doing is working so well that my PSA continues to go down, meaning that the cancer is mostly dormant, I'll take it!

One of my big concerns was that, in the past month, I not only started physical therapy but also supplemented that with some low-level upper body exercises at home. My understanding is that exercise increases testosterone, which was adding to the anxiety before my check-up. I need the exercise, but will it trigger cancer growth and spread? Apparently and very thankfully, the answer to that question is "no".

Speaking of PT, it really wears me out sometimes but I can tell that it's working. My balance (which had fallen into the "absolutely sucks" range) has improved. Likewise my lower body strength. I've still got a long way to go, but anything that makes me healthier than I was last year is welcomed with open arms. 

My wife and I found ourselves out at a frozen lake in a local state park on Wednesday, after the oncology appointment. The outside temps had warmed up that day, but there was still at least 6" of ice on the surface of the lake. After spotting a couple ice fisherman out much farther than I would choose to go, I decided to venture out on the ice for the fun of it... and ice photos! I didn't realize it when I stepped out, but this turned out to be a pretty intense test of both balance and leg strength. I had no ice cleats with me, so I was literally walking around on the ice with street shoes. I'm still surprised that I never ended up with my butt on the ice!

 

 

The next day, between trying to keep myself upright on the ice and a new and strenuous PT exercise, my legs we're just killing me. As I write this three days later, my legs are still sore. As much as that might sound like a complaint, it's also so nice to know that I'm building strength, gaining more balance, and I'm able to do stuff like walk around on a frozen lake. I don't think I would have been able to do that through most of 2024.

Bottom line? This recovery is remarkably slow but it's nice to feel sooo much better than I did most of last year, and it's just a nice to know that my PSA is staying down for now. 

Zen and the Art of Battling Cancer

✦ ✧ ✦ ✧  WARNING: Music Nerd Post  ✧ ✦ ✧ ✦

Not long ago, I was having a conversation about music with a good friend of mine. My friend and I have enjoyed numerous great conversations about music over the 30 years that we've known each other. In this instance, we found ourselves talking about how some music gets past us and, on the other side of that coin, the ups and downs of only recently discovering "older" music. This led to a brief discussion of some other self-imposed frustrations we put on ourselves.

It got me thinking about how my listening habits have changed, influenced by my battle with cancer for the past year. It's safe to say that this battle has changed me in several ways, both physical and mental/emotional, and our conversation made me want to try to articulate how the past year has changed my listening habits. 

Since I’ve been sick, I’ve really embraced spontaneity in my listening habits like never before. If a post about a record or a band makes me curious (or nostalgic) I give it a listen. If something trips a trigger and invites me down into a deep musical rabbit hole, I willingly follow it in. Life is short, and none of us will ever hear all the music. Listen as you please.

I realize that the ability to stream music makes the aforementioned easy to do. I would never have been unable to listen so spontaneously even a decade or so ago. I'm a big fan of streaming music for all the investigating and experimenting you can do with such ease. (To anyone reading this who might also be sensitive to the ways in which many streaming services pay so little to the artists whose work they stream, rest assured that I often support artists I really like financially.)

Sometimes things don't trip any triggers with me. In the past I might "try" to like it with further listens, especially if it's getting good reviews. Now, if something doesn’t hit me, I might just try it again later... or I might not. Sometimes it works “later” and sometimes not, but that’s okay too. It's all okay. There are no rules.

My friend and I share a common frustration (or would "sense of wonder" be more accurate?) about certain music slipping past our radar and then "discovering" that music much later on. Here's an example: One of my sweet spots in the world of jazz is small group sessions from the late 50s and early 60s. Most of this came out before I was born. Sometimes when I listen to it, I’m both overwhelmed at how great some of that music is but also frustrated that I didn’t even know it was out there until decades later!

It was a low key frustration, to be sure, but I've never liked missing out on things musical. These days, I’m convinced that such late discoveries only enhance my daily listening experiences. New musical surprises… only of older music. I realize that my previous frustrations were entirely self-induced, but it's still nice to be free of them.

There's a Zen-like, go-with-the-flow theme emerging here. Music has been incredibly therapeutic for me since I got sick. It helped bring me out of some very dark places. I value it now more than ever ... and I already valued it a great deal! I’m not going to give a second thought to how timely I discovered something, whether or not I "should" like it, how much I know about it, or even whether I'm streaming or listening to physical media sources to hear it. 

Life is too short for all of that, except music itself.

100 Days

It has now been 100 days since my last chemo infusion on October 1, 2024. That seems like a good excuse for an update. 

I've alluded to this in previous entries, but I'm astounded at how long recovery from chemo takes. Over three months from my last infusion and I'm still weak, feeble, and my balance is terrible. I've only just recently stopped using my cane around the house for stability, but I still get around like an old man and make frequent use of countertops and door jams to maintain stability.

I just turned 62 but I feel much more like 72+ these days. Seriously.

My hair is taking an incredibly long time to grow back. I think I mentioned this in the previous post but my glacially slow hair regrowth has turned into a gauge for my healing in general. I've been very frustrated that I'm not getting better any faster than this, and my wife reminds me that my hair regrowth is a visual indicator of how long it's taking my body to recover from the chemo. That has helped me be more patient, at least to an extent. 

Matters of fact: At 100 days after my last infusion, I have 1/4" to 1/2" hairs growing on most of my head, eyebrows, mustache, cheeks, arms, and chest. (I was no gorilla before I got sick but I was a kind of hairy guy, making the loss of hair very apparent.) At a distance, I still look mostly hairless. Only my chin hair seems to be growing enough to be obvious.

Somewhere in the middle of my chemotherapy, at the end of some of those rounds, I felt well enough to go for short hikes now and then. I expected that to happen during the last week of round five and six, but the accumulation of Docetaxel in my system had built up enough that I never saw "better" days during those rounds. Little did I expect, though, that I had so much in me it would take many more months to recover once chemo was over. It will be interesting (in a somewhat perverse way) to find how long it will actually take before I feel like my old self again. At times I wonder if I will ever feel like my old self again.

In better news, I started physical therapy, and I've been working on some things that definitely seem to be making a difference in terms of strength and balance. In addition, just in the past week or so, I've started to do a few upper body exercises on the Total Gym that I bought about a year ago. (At the time I bought it, I thought I was really run down and out of shape, and it was winter. I didn't realize cancer was spreading through my body and making me feel that way.)

My physical therapy exercises are focused on hip and balance issues right now. All lower body work. My upper body was always the stronger half of me but I still want to get back some of what I lost through last year's ordeal. That's the Total Gym's job right now. I'm also happy to report that, even though I'm only doing about a dozen repetitions of a handful of exercises, it's not wiping me out. The smallest amount of exercise was wiping me out from February 2024 onward. It's nice to feel that I'm finally at least well enough to handle some minor exercises. It's been a while!

One last thing. I'm still on my anti-testosterone hormone drugs. I will likely remain on those drugs. I really have to wonder how big a role those are playing in my overall lack of strength and stamina. They've got to be playing some role!