The two questions I often hear are natural and proper and closely linked: “How are you feeling?” “Any side effects yet?”
The truth is, I feel pretty well. As I’ve told a few people, “Damn thing is trying to kill me, but I feel fine.” That is an overstatement, a simplification, but it’s close enough. Put another way, it could be a lot worse.
As you read the rest of this, please keep in mind that the way we live our lives has not substantially changed due to this. And with COVID-related issues beginning to recede, we’re actually returning more to normal. We’re spending increasing amounts of time with the kids and with our friends, we just booked our pre-COVID annual trip to visit cousins Barry and Sharon in New Hampshire, etc.
A more accurate, more complete, assessment of how I feel links closely to the second question, the one regarding side effects.
It’s difficult (and largely futile) to categorize the sources of physical, mental and emotional changes. Is this one coming from the cancer? That one from this treatment or the other treatment or…the other treatment? And how much of this is attributed primarily to advancing age?
In any event, the effects thus far, in degree of difficulty:
- Fatigue. That term “fatigue” often is used synonymously with “tired” or “sleepy.” But cancer patients – and patients of many other diseases – know that true fatigue is something else entirely. It’s a full-stop kind of thing. Your leg muscles feel wobbly, your belly somehow chilly or empty or something, your shoulders achy, your mind foggy. You don’t just want to take a nap. You must. In my case, it usually arrives in late morning and/or mid afternoon – even after a decent night’s sleep. Not every day, though. Sometimes, I can push right through with barely a hint of it, but when it’s there, it’s there. Most of this likely is attributed to the various forms of chemo (I’m just going to call the meds “chemo,” because to laymen, that’s what they are), which warn of severe fatigue. Some of the fatigue likely is from the cancer itself, which triggers the body to fight back hard. And some simply from age.
More about cancer-related fatigue can be found here:
- Lack of stamina. A close cousin of the fatigue, this one appears mostly during or after exercise. Until not long ago, I ran three miles or more around our hilly neighborhood virtually every morning. Now, a medium-paced walk can be taxing. But it’s also mandatory to keep muscles from atrophying and bones from weakening due to the chemo. So, we push through that, too. Both this and the fatigue often require pre-planning or workarounds – “I’ll do this and that, and then I better plan to rest before I try to do these other things.” (I kinda hate this. Ask anyone I ever worked or played with – hard work, long hours and other expressions of uber-stamina were key characteristics.)
- Weight gain/weight loss. As I mentioned in a previous post, one of my meds produces weight gain; another weight loss. At the moment, I’m holding steady, with a possible slight nudge toward weight loss, which is not unwelcome. To a point.
- Brain fog. Another close cousin of the fatigue, this is a generic term used by people on chemo, and it’s quite real. Forgetfulness, inability to find a word, that sort of thing – and in a different, more random, deeper way than advancing age itself would cause. The other night, I was standing in the kitchen, trying to tell Marion something, looking at the kitchen counter and utterly unable to recall the word “counter.” I mean, I’m looking at the damn thing. The best I could do was “the whatchamacallit right here.” This doesn’t happen often, so far, but it’s scary. I’m a writer. Words are my tools. I need my tools. Among other things, I’m trying to finish three contract writing projects. I will, but I’m doing everything I can to accelerate that process.
- Another word I just had trouble remembering and had to look up: libido. Probably nothing harder (pardon the expression) for a man to admit, but I have none. It’s the first thing to go when a guy gets on androgen (hormone) deprivation therapy (ADT). Absolutely universal, if rarely shared with the outside world, for prostate-cancer patients on this common therapy. The objective of ADT is to force the body to stop making the male hormone testosterone, the primary fuel of prostate-cancer cells. The therapy works, for awhile and to an extent still to be determined in my case (more coming down the road about that), but no testosterone means no libido – and it causes the previously mentioned weakened muscles, and occasional hot flashes and other delights. It’s a strange sensation – I can appreciate the beauty of my wife and of other women, but that sensation never travels below my brain. This is the “side effect” that often produces the deepest emotional toll on prostate-cancer patients, especially those considerably younger than I am.
- Mental/emotional changes. I don’t think I’ve experienced much of this. I tend to be evenly balanced. I don’t cry when normal people cry (though sometimes I catch up when another stimulus hits me). Present me with a problem, I start working on solutions. However, I have noticed that, very rarely, I’ve reacted sharper and more reflexively to a verbal stimulus than I previously might have, though truly not often. I try not to dwell emotionally on this battle. My outlet is brief, substantive chats with Marion or close friends – and, of course, this blog.
I’ve lost it – or my version of lost it – just once so far: When I received the email from my urologist summarizing the findings of the scan – that the cancer somehow had spread throughout the lymphatic system – and walked in to tell Marion just before we headed to the oncologist to hear the full assessment. My voice cracked and I teared up and it wasn’t because of what it meant for me – it was because I felt guilty that I was bringing this on her and Allie and the kids and the rest of the family and our friends. Don’t bother – I know that such guilt was and is misplaced. I didn’t cause this to happen. But the whole point of this blog is to be brutally honest about what’s going on here, and that is what I felt at the time, and to some extent, still do. And I know from reading the message boards that I am not alone in this.
So, that’s pretty much it for now, though other effects – side and otherwise – are likely to come along.
Coming tomorrow: Another double-blast of injected chemo, a genetic blood test, and, if I’m successfully persuasive, an out-of-sequence bonus PSA test to determine if these treatments – including the four chemo pills I take every night – are beginning to work. Will advise.