Hairy Christmas!

Some time in December, my hair started growing back. I'm still mostly bald but you can definitely see dark hair coming in on my head and a lot of gray stubble on my chin. 

To my amazement, this didn't start until over two months after my last infusion! The first stuff we noticed was very wispy, white or light gray hair on the side of my head above my ears. Then the gray stubble started on my chin. I have heard various things from people about post-chemo hair growth, some saying it will grow in curly and others saying it will grow in gray. I hadn't noticed if anything came in curly, but I was starting to wonder if I had lost my dark brown hair. 

Thankfully, it looks like I haven't. My chin (which was already salt-and-pepper before I got sick) isn't showing any signs of dark hair, but what's coming in on my head is more dark than gray. My beard is not growing very fast on the sides of my face, making me wonder if it's going to come back in dark but, somehow, the dark hair is taking longer?

Anyway, I'm happy to see my hair coming back. It's still probably going to be another month or so before I have enough that I'll need to trim it, but time will tell. 

On a related note, I've been rather impatient with my inability to (physically) do much now that I'm done (for now) with chemo. My wife pointed out that my incredibly slow hair growth is a good indicator of how long it's taking the rest my body to heal. It's been helpful for me to see things from that perspective.

 

A New Kind of Therapy

So many therapies. 

When I first had the prostate cryoablation in April, everyone in the medical profession seemed to be calling it "cryotherapy" (probably because it sounds less invasive.) Next came "chemotherapy", which was a gentle way of saying, "We're going to poison you, repeatedly, for months, in order to try to poison the cancer in the process." I'm also undergoing some "hormone therapy" by means of the testosterone inhibitors and blockers that I'll probably be taking for the rest of my life. 

Now I'm on to a different kind of therapy.

On Wednesday, I had my first physical therapy appointment. Originally, they weren't going to be able to get me in until some time in January, but they called on Monday and asked if I could start on Wednesday. I was keen to start as soon as possible, but rather apprehensive about it, too.

Between my lack of physical activity this year and the abuse my body has taken from both the cancer and it's treatment, I am currently in the worst shape in my life. For example, when I need to lift up a leg to put a shoe on or get into a car, I have been using my hand/arm to reach down and help lift it. For whatever reason(s) my lower body has fallen much more out of shape than my upper body, which was confirmed at this first PT appointment. 

Part of the appointment was diagnostic. They had my medical records, so we talked about the weaknesses I'm experiencing and what some of my goals were for PT. I came up with such lofty goals as "be able to stay balanced again" and "be able to hike a mile in the woods again." My therapist then ran some tests of balance, resistance, stamina, etc. The simple resistance tests made it clear that, while I did still have some upper body strength, my lower body was pretty wimpy right now. 

I suppose that's not too surprising, considering that the had cancer spread to my lower spine and both hips before we discovered it. I remember looking at my PET PSMA scan from back in March and being blown away by how much cancer "lit up" in my hips in particular.

Anyway, I feel like I'm in good hands with this physical therapist. He seems to know his stuff. He gave me a set of exercises (stretches, really) for me to work on at home and went through each of them with me in the PT room. By the time I got home from the appointment, I was pretty wiped out by everything we had done, so that was the only set of exercises I did that day. 

I have managed to go through at least one set of each of the exercises on each of the days since. My therapist wants me to do two sets, though, one in the morning and one later in the day. So far I haven't managed it, partially due to how I feel and partially just due to stuff we've got on the calendar. I'm determined to get into it, though. It's the only way I'm ever getting back to hiking, biking, and kayaking.

With that, then, I'm off to do my PT exercises for today!

Reasons To Be Cheerful, Parts 13-20

In order to try to counteract the woe-is-me vibe of the last couple posts, I felt like another "Reasons To Be Cheerful" entry was in order. This is Thanksgiving week, after all. If I needed a good reminder to be thinking more about gratitude than personal anxieties, this is surely it.

13 - I should probably begin by saying that I'm very grateful to be alive. That might sound intentionally dramatic but, when we first got the "Stage 4: incurable, metastatic prostate cancer" diagnosis back in March, we were so scared that we weren't sure if I'd make it to the end of the year. I'm very grateful to still be here.

My wife's love and caring for me during this process initially prompted me to write a journal entry called, 'My Hero', back in April. Then, when I stumbled on the idea for posts like this, she was actually my #1 Reason To Be Cheerful back in June. However, It didn't feel right to now say something like, "I already mentioned my wife, so let's move on." There is literally no way I could be doing any of this without her. She has done so much for me during this battle, from making sure I eat well to helping manage my appointments and medications to holding me tight when the going got really rough and/or I got really down. She has showed me so much love and encouragement every single day that I am eternally grateful to have her by my side during all this. 

My daughter has been great through all this, too, although she no longer lives at home. It has been scary for her to see her dad so sick but she continues to be strong, loving, and supportive. I'm so proud of the young woman she has become.

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Similarly, I'm still grateful for all my previous "Reasons To Be Cheerful", but I won't repeat those here. Instead, I'll list some new(ish) gratitudes...

14 - I will be forever grateful to the friends who have visited me, sent heartfelt cards, gifts, messages of encouragement Facebook or Messenger, and generally supplied me with pats on the back as I went through chemotherapy. I don't think I can ever repay what that has meant to me.

15 - I'm SO thankful that the chemo is over, at least for now.

16 - I'm relieved that all the treatments I've received have been successful. 

17 - My doctors feel that I won't need any more poking and prodding until the end of January. ... Is that the same as #16?

18 - I'm grateful for the times when I have the energy to get outside and be in nature. The relative rarity of those times makes me appreciate them even more.

19 - All of the enforced "down time" I've experienced this year has reminded me of the value of slowing down and doing nothing at times. Just being quiet and alone with the thoughts in my head. That's got to be a form of meditation. I didn't realize I had lost the ability to do that until the chemo forced me to recognize it again.

20 - All of my enforced "down time" has allowed me to reconnect with music in ways that I haven't been able to for a while. My listening habits had become somewhat cursory and much less intentional in recent years. Lots of listening on the go but very little listening with the intent to fully absorb. Having little else that I could do this year has refocused and improved my relationship with music.

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The title for this particular series of posts was inspired by the delightful song from Ian Dury & The Blockheads called, "Reasons To Be Cheerful, Part 3". It came out when I was in high school around 1980 and was supposedly written in the aftermath of a near-death accident where a lighting roadie of the band's was electrocuted. It's actually a happy song, though, because even when Ian Dury went dark he still wrote fun songs.

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 For reference:  Reasons To Be Cheerful, Parts 11 & 12

Chemo Flashbacks and Dread

It's been almost a month since my last journal entry, and almost two months since my last chemo infusion. It would be nice to say that I'm feeling so much better now but I can't. I'm still very weak and have almost no stamina. I still need my cane for stabilization because my balance is atrocious. My issues right now could be due to the lingering effects of chemo, the testosterone inhibitors that I'm still on, or the fact that I've had almost no significant exercise since February (10 months ago). 

What's most likely is that the fault lies in some combination of the three.

In addition to still being very weak and tired, I seem to be having all sorts of nerve misfires these days. I've been calling them "chemo flashbacks" since the chemo really messed with my nerves and caused numerous problems throughout my body. Many of them are less severe now, but I still can't get used to them. Sometimes...

• I'll get some neuropathy (uncomfortable tingling) in my hands. 
• It will feel like someone is using my heel or big toe as a pincushion. 
• One of my eyelids will just start flickering like crazy. 
• It will feel like someone is jabbing me with something sharp.
  

The list goes on, unfortunately. The chemo brought these things on before and they often lasted for torturous lengths of time. Now, they are much shorter in duration but seem to happen much more frequently.

Then there are the hot flashes. I wasn't really sure if these were caused by the chemo or the lack of testosterone under my other meds. There are some days when they're few and far between but other days (like today) where I've probably had a dozen hot flashes through the day. Although I know my body is still trying to clear out the chemo drugs, I'm leaning more and more toward blaming the hormone meds for the hot flashes. It's a disappointing conclusion because I'll probably have to be on the hormone drugs for the rest of my life. (This cancer feeds on testosterone.)

Honestly, though, I feel like the main reason I haven't written in a while is depression from dwelling over the word that has been repeated over and over by my team of medical professionals... "incurable". I'd like to think, after everything I've been through since February, that I'd be "cured". Such is not the case and, even though doctors have been telling me that since the start, the reality of it still brings me down. It didn't help that I recently read about a guy who had the same cancer, a similar level of metastasis, battled it until he thought he had it beat, then it came back even worse a year later. 

People often talk about the physical issues associated with this battle, but not always about the mental and emotional ones. I'm not even sure I'm ready to talk about it here. I am, however, grateful to have a very open and communicative relationship with my wife and daughter, as well as friends who check in and send me messages of encouragement and love. Both have helped me navigate through this post-chemo darkness in my head. It's still there but at least I'm starting to feel like I'm starting to see some light.

The weirdest aspect of the depression is how it took me by surprise. I thought for sure that I had been through the worst (mentally and physically) and that the clouds were going to lift and I'd start feeling (mentally and physically) much better. Instead, I've gone into what my mom used to call "a funk" over the idea that I still have cancer and that it will still try to kill me. 

Not might... will.

How does anybody handle that kind of weight? I'm in the process of trying to figure that out. One thing I do know is that dying suddenly without any type of warning is definitely the way to go out. There's a heck of a lot of dread involved in knowing you've got a problem that is going to eventually kill you.

Graduation Day

Originally, I was scheduled to have six chemotherapy infusions. If I was to have more than that, today would have been the day I got the seventh. Thankfully, that did not happen. 

We simply met with the oncologist today, to have a brief discussion about where we go from here. He feels that my PSA level (now 0.26, which is great because it was once over 100!) is a good indication that my treatments were effective. He does not feel the need to continue chemo at this time (YAY!) but won't rule out ever having to go through it again (BOO). 

Each of the various doctors that I've seen during this nightmare have reminded me that my cancer is not just "simple" prostate cancer. Especially since it spread to my hips, spine, and a few other places, they have all stated (more than I really wanted to hear) that my cancer is terminal and that they cannot completely cure me of it. So, while I'm very happy to stop chemotherapy, at least for a while, I'm still having a very hard time knowing that this disease will come back to try to kill me again.

If you define "chemotherapy" as only the drugs given to me by infusion, I'm now done, at least for the time being. However, I will remain on some other types of chemotherapy. I will remain on Aberaterone, a hormone blocker, that I take orally every morning. Prescribed with that is a low dose of Prednisone which helps tamp down my body's reactions to Aberaterone. I'll also continue to get Prolia injections once a month. This is to help strengthen my bones, particularly where the cancer has attacked them. Finally, I will continue to get an Eligard injection every three months. Eligard is designed to keep my body from making more testosterone. I will also continue to take numerous vitamin supplements to counteract the negative side-effects of all these drugs.

The emphasis on lowering and blocking testosterone is because that's the "food" that this type of cancer likes. I suspect that the incredibly low energy that I'm still feeling to this day has as much to do with all that testosterone blocking as it does the Docetaxel infusions I've been getting for the past six months. This worries me because only the Docetaxel is being paused. I don't feel like I have much energy, certainly not enough to do much exercise, yet exercise is what I need most right now. (See my previous journal entry for one of many reasons why I feel that way.)

Don't get me wrong. I'm happy to be done with the infusions, at least for now. Docetaxel was like some sort of poison that, at its worst, truly made me feel like I was dying in several different ways. Even its lingering effects, some of which are still at play in my body, seriously degrade my quality of life. I just feel like it would be nice to have this nightmare end. Instead, I've just leveled up enough to be on more of a maintenance program than a full scale attack. 

I still have cancer, then, just much less of it. No one has yet to give me any kind of prognosis for survival other than to say "years". When I try to press for something more specific, no one is willing to give me an answer. The idea that a resurgence of this aggressive form of cancer could come back to get me in just a couple or few years haunts me, and I'm pretty sure it will continue to haunt me. I don't know how to make peace with it. I guess I'm just going to have to get even better at living in the moment because it appears that my moments are numbered.

"I've fallen and I can't get up!"

A scary thing happened to me the other day. My wife and I took a drive to look for some fall color here and ended up at a somewhat local forest preserve. We decided that we were both up to a short hike around the basic loop trail there, which was only about a half a mile in total. 

We were most of the way around the loop trail with our car in the parking lot in sight, and I spotted some cool fungus growing on an old log. As I tend to do in such situations, I got down on one knee to compose the shot. When I tried to get up, though, I couldn't do it!  My legs were literally too weak to help get me off the ground. I had my walking stick nearby, so I tried to use that to help me get up. Nope. 

I was starting to struggle (and maybe panic a little) so my wife came over to where I was. (She had stayed on the trail while I went off trail for the photo.) She put a hand out to try to help me get up. We tried several times and I still couldn't get up! My legs felt like wet noodles; like they had no muscle whatsoever and were useless limbs. I was really panicking now. Was I ever going to be able to get off the ground?

There was a decent size log about 6' behind me, so I scooted over to it and was eventually able to position myself to sit on it. My wife kept asking how she could help get me up but I said I just wanted to sit there and catch my breath. I was huffing and puffing, and probably at least partially because I was freaking out. Once I did catch my breath, I was in a better position for her to help so, with her on one side of me and a walking stick in the other, I was finally able to stand up. 

The story doesn't end there, though! Once I stood up, I could barely walk! Again, it was like my legs were wet noodles, likely exacerbated by the strain I had put on them to get up. It took almost as long for me to hobble the short distance from there to the car as it did for us to walk the first 80% of the loop trail. I've never felt anything like that in my legs before! I've also never felt the kind of panic I was feeling when I couldn't get off the ground, even with assistance from my wife.

I most definitely need to get some exercise, and I hope that's all I need to do to avoid situations like this in the future.

Off To A Shaky Start

As I mentioned in my previous post, I had not really recovered since the last round, even though we had four weeks between infusions. I kept feeling weak, tired, and not at all like I could go for walks or small hikes like after my fourth round. Mentally and physically, I don't feel ready for this round. 

The infusion itself went without a hitch, although I started getting hot flashes during the infusion! That’s a first, as far as I can remember. If there's good news it's that our new oncolologist (see bottom paragraph) suggested that we reduce my dosage of Docetaxel by 20%. I would have very much appreciated that offer after the nightmare of the first round but our previous oncologist would only "negotiate" with weeks between infusions, not dosage. Even for my supposed last round, though, I'll take the reduction! New oncologist said that it should make no difference in efficacy, especially at this point in my treatments. 

So yes, the hot flashes started atypically early. They continued through the afternoon and evening. I had at least a dozen of them in that time, I swear. 

My wife and I have a now-typical evening routine we enjoy that involves having our dinner while we settle in to watch a movie or some of the British mysteries we love. Date nights, if you will, almost every night! She has her glass or two of wine and I've learned that about an hour before we start is a good time to have a gummy. They take an hour or two to kick in. Then I have another near the middle-to-end of our show and I get NICE and relaxed for going to bed later. (I won't deny that enjoying our movie or shows with a little buzz is nice, too.)

The first sign of trouble, last night, was that my first gummy never seemed to kick in. I took a second, more potent one a couple hours later, and even then didn’t feel much from it. Just before bed, I took a third gummy (now a little over 75mg hemp-derived THC) with very little payoff. I definitely think my body’s reaction to THC is altered greatly by Docetaxel. This is far from the first time the chemo has prevented me from catching a good buzz and a good night's rest.

I went to bed shortly after 11pm. It was a cold night, so I tossed and turned for a while, not realizing that I wasn’t getting cozy enough to fall fully asleep. That went on until around 2:30am when I had to pee. I may have gotten an hour's sleep during that time? When I came back to bed, I spent some time replacing the light top blanket (that was more than enough the night before) with a much thicker blanket. I got back into bed, started getting warmed up, then felt a hot flash coming on. I rarely get them at night. I’m freezing when I get into bed and, within seconds of getting under warm blankets, I’m burning up. Finding some sort of equilibrium took some time and strategic blanket arranging.

 

After finally getting my temperature regulated, I curled up on my side to get some good sleep. HA! Restless leg syndrome kicks in, along with some other random nerve weirdness in my hips and toes. Foolishly, I was so desperate for sleep that I closed my eyes and hoped it would all “just go away”... It didn't. Somewhere after 4:30am, I took 15mg of dispensary THC in hopes that something would put me out for a few hours! This was not to be. No adjustment of blankets, pillow, body position, music, silence, or herbal supplements allowed me to get back to sleep. I got a lot of "rest" last night (hereby defined as me being horizontal with my eyes closed) but maybe two hours of actual sleep at most. 

 

I have a feeling it’s going to be a very “nappy” day for me. 

 

*People are always curious when I mention my "new oncologist". The regular oncologist at our Cancer Center retired at the end of last year. We never met him. Since his permanent replacement was not scheduled to start until September, we spent the first five months of our cancer battle (April through August) with a knowledgeable-but-temporary oncologist.

Accumulation

Just when you've got something like this figured out, the game changes. 

I have been weak and feeble since I came out of the worst of the side-effects this round. I just never got well enough to do any kind of actual exercise. My wife and I have talked about this and both think that this is a cumulative effect of the chemo in my system. My body is just having a much harder time bringing me back to some sense of normal. 

 

If we’re right, I worry about what that implies for my next (and supposedly last) round of chemo. 

 

During this round, I feel that many days were 5-10% better than those respective days in previous rounds. If the next one runs a similar course, I’ll appreciate the slight reprieve in severity but I won’t appreciate the extra bouts of nausea nor an extension of the already long, slow climb back to normal.

 

We recently read something about people claiming they still didn’t feel recovered until 2-3 months after their last round of chemo! I sure hope that happens just a bit more quickly for me. I feel like I’d feel so much better if I could just get some exercise, yet I can’t exercise when the simplest of tasks or chores wipes me out. Sometimes walking to the bathroom and back wipes me out! That much fatigue is not the least bit conducive to getting exercise.

 

My sixth chemotherapy infusion is scheduled for tomorrow. I guess all we can do is hope for the best under the circumstances.

Jinx!

The superstitious part of me suspected that this might happen. After posting my last journal entry stating my gratefulness for not suffering much nausea during chemo, I had two days of very serious nausea culminating in a 3am vomit-fest a couple nights ago. I should have just kept my mouth shut (fingers shut?) and not said anything. 

Actually, we're suspicious that I may actually be suffering some cumulative effects of the chemo. I was warned about this before I started but then, probably because my first round was as bad as it was, I quickly forgot the warnings about poisons (callin' it as I feel it) accumulating in my system. 

There's the nausea, which can be pretty bad at times, but is a consistent low-level problem right now. I also continue to feel weak and tired, something I was able to work my way out of as recently as the end of the last round. I'm writing this on Day 20 of this round, and still feeling poorly enough that I'm still sticking pretty close to home and not doing much. On Day 20 of the last round, I had already been out and doing some low-level hiking. 

I'm seeing my reaction to the side-effects of chemo as a bell curve, with the absolute worst days usually peaking around Day 7, then slowly tapering off through about Day 14. I still wasn't 100% after Day 14, but I had enough energy to start doing things. This round, the curve before the peak is lower and the peak itself is lower (both good) but the taper-off that should be happening afterward looks more like a plateau. 

I don't go in for my next infusion until October 1, so I still have next week to feel better, but the pace with which it's happening now is not encouraging. My wife and I both definitely think I'm dragging due to the cumulative effects of this damn chemo. 

Perhaps it goes without saying, but this new "extension" of ill effects is depressing.

Reasons To Be Cheerful, Parts 11 & 12

There's something I've been very grateful for that I just realized I've never written about in detail here. One very common side-effect of chemotherapy is nausea. Before I even started my first infusion, they wanted to make sure I had anti-nausea, anti-vomiting medication at the ready. I was not looking forward to this reaction but I felt like it was probably inevitable.

One major reason I've had to be cheerful is that, and I'm super hesitant to say this out loud... I have rarely been nauseous during this entire ordeal. Even though most doctors and nurses agree that I've had an inordinately high number of negative reactions to my chemo, I have only had a few rare instances of nausea.

Closely related, at least in terms of my ability to eat, is that another common side-effect is a loss (or change) in one's sense of taste. It has happened to me, but seems to be isolated to one or two specific tastes, and usually doesn't last long. For example, occasionally, water tastes bad to me. Then it's back to tasting like water later in the day or the next day.

I continue to be eternally grateful that neither of these notorious side-effects have been much of a problem for me. Why? Because it means that I can still eat somewhat normally and food still appeals to me. That's as important for my sanity as it is for my health. 

 

For reference: Reasons To Be Cheerful, Parts 7-10

It's Always Something

Before I even started chemotherapy, an oncology nurse advised me to start journaling reactions and side-effects. She was suggesting a different kind of journal than this one. She meant more of a daily thing where I made quick notes of reactions and side-effects so that I can track them, hopefully with the benefit of knowing what's coming and for how long. 

For the most part, this has gone according to plan. It has been good (though admittedly sometimes depressing) to look at "my dailies" and get a pretty good feel for what to expect on certain days. However, it fails me when it comes to the finer details, and mainly because there are always a few new reactions that were either never previously documented or intensified with successive rounds of chemo. 

I'll use this particular (fifth) round as an example. From the day of the infusion (Day 1) through Day 7, things were going pretty much according to the general pattern that had developed. In fact, during those days, I commented to my wife about how it seemed like the side-effects from this round were 5-10% milder than the same days on most previous rounds. It gave me the feeling that I was coming out of the woods, albeit with a long, slow hike out. 

I had recorded that Day 7 of most previous rounds met me with a health "slump". I suddenly felt much worse on that day, and often worse (or so it felt) than any of the days that came before. When I got to Day 7 of this round and still felt that 5-10% better overall, I thought I had dodged a bullet. 

Then came Day 8.

Day 8 of my fifth round of chemo turned out to be the kind of fresh hell that had hit me on most of the previous Day 7s. Extreme weakness, lethargy, a list of torturous nerve issues, thrush, stomach issues, bowel issues, rash issues, even some neuropathy in my fingers for good measure. I haven’t been keeping track of tears in either journal but I had a major breakdown on this day. It just all feels so fucking relentless and torturous. 

The next day turned out to be about the same. Perhaps not quite as intense but still pretty miserable. I'm writing this on Day 10 and I'm finally starting to feel that 5-10% less miserable again. Hopefully, this will continue. I remember that, by Day 13 of the previous round, My wife and I were able to go out and visit some parks. I was still pretty weak and tired quickly, but I could do it. I couldn't even fathom doing something like that yesterday or the day before. It took all my effort just to get to the bathroom!

In general, it has been good to keep track of reactions and side-effects in my other, private daily journal. What just happened, though, is a good reminder that the rounds are not going to be exactly the same and that I can't depend on feeling better just because my daily journal indicated I was feeling better on the same day. 

And So We Begin Again

I have to start with this great quote I just heard from the always wonderful Billy Connolly: 

The world is full of horrible things that will eventually get you and everything you care about. Humour and laughter is a universal way to lift your head up and say, “Not today you fuckers”.

I'm trying, Billy. I'm trying. Thanks for the good reminder!

Well, here we go again. On Tuesday, September 3, I had my fifth chemotherapy infusion. As usually, everything went smoothly and I felt no differently throughout that day. Today, I woke up to the hiccups again. Hiccups?! For the past couple rounds, I have noticed that I become incredibly susceptible to hiccups for the day or two after infusion. It would be a more humorous side-effect if I didn't dislike hiccups so much! I probably had hiccups at least six different times today. 

Here's our hypothesis: Hiccups are uncontrolled spasms of the diaphragm. Those spasms are initiated by nerve signals, and many chemo drugs irritate the nervous system. This same hypothesis would probably also explain I keep having restless leg syndrome, or why I have days when I feel like my legs are not just weak but kind of freaking out on me, or that occasional sensation of "chills" in my legs and butt at times when I am definitely not chilly.

Otherwise, though, Day 2 or Round 5 was pretty normal. I could tell I was losing energy as the day went on. It's about 9:30 pm on Wednesday right now and I'm starting to feel ready for bed but not because I feel horrible. I'm just getting tired.

(As a lifelong night owl, my usual bedtime was usually somewhere between midnight and 2 am. Now, I'm usually in bed by 10, and certainly even earlier when the chemo is hitting hard.)

I keep another journal, separate from this one and not online, where I'm really just documenting the timing and severity of side-effects. If the past four rounds is any indication, I'm in for a somewhat bad day tomorrow followed by 5-7 more very bad days after that.  yay.  I'm going to try real hard to remember that quote from Billy Connolly during that time.

Reasons To Be Cheerful, Parts 7-10

I've been struggling to write the next journal entry during this round of chemo. I'm not exactly sure why, but I suspect that it might be because nothing out of the ordinary happened during this round. That's not to say it was easy; there was still the truly hellish week when the side-effects are at their worst, there was still the long slow climb out of that and back to something that felt more human. 

It's just that, with slight differences in severity and duration, this round was very much like the three that came before it. In fact, this round kind of felt like a textbook example of what I've now come to see as the average round of chemo for me. Every time I sat down to write a journal entry, it felt like I was going to be repeating myself. 

 

However, right around two weeks in, Day 13 to be exact, I felt well enough to spend an afternoon using some energy for something more than basic housebound functions for a change. In fact, I felt a strong need to test what's left of my stamina. The weather was great, so my wife and I made a plan to visit a number of the Rock County Parks (located in southern Wisconsin) that we had yet to visit. 

The visits would not be like they used to be, where we'd walk the trails in places like that for a couple miles. Sadly, between chemotherapy and testosterone lowering/blocking drugs, I doubt I could hike for more than 3/4 mile (total) at one time before feeling wiped out. Very different from how I felt last year at this time.

We visited three new-to-us parks up there. We briefly walked some of the trails at the first two, maybe even more than 3/4 mile in total! (I was able to rest between parks because my wife drove.) I was getting pretty tired by the time we left the second one. Luckily, the main attraction at the third park was a nice, quiet lake, so we found ourselves a bench and contemplated the universe for a while. 

It was almost indescribably nice to get back out into nature after a couple weeks of chemo hell spent mostly on the couch.

 

Later that week, our daughter visited us. Not only did she help us out with some larger-scale cleaning jobs around the house, but we had a lot of fun too! She's my bonfire buddy, so we did some creative campfire cooking one evening. A couple days later, the three of us visited one of our favorite Forest Preserves in this area, partially as an excuse for my daughter and I to do some creek walking. Such wonderful, memory-making times! 

I've said before that I wouldn't wish chemotherapy on anyone, and that's still true. Describing it as "hellish" is not just hyperbole. I just find that what inspired me to finally write another entry after 20 days are the good times I've managed to have with my family when I'm not at my worst. Gotta keep the positive in mind, especially when it's harder to see in the grand scheme of things.

 

For reference:  Reasons To Be Cheerful, Parts 1-6

The Poisoning, Part IV

Yesterday (Monday, August 5) we met with our palliative care specialist and then had bloodwork done at the Beloit / UW Cancer Center. The bloodwork must have looked like my body had repaired itself from the last chemotherapy - at least enough to be able to poison me again - because we're on to Round 4 (of 6).

Today we returned to the Cancer Center for my next chemo infusion. As with the previous three, the infusion itself usually goes without a hitch. However, 24-48 hours later, it kicks in fully and my body reacts. I think the first infusion was followed by a 48-hour "wait" time, whereas that shortened to about 36 hours during my second round, then about 24 hours during the third. Who knows? Maybe it will kick in after only 12 hours after my fourth infusion!

Not that it means anything, but I'm about 10 hours out from my latest infusion as I type this. I hope it waits until morning to kick in.

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Speaking of things that kick in, we also made our first visit to Sunnyside dispensary this afternoon, after all the other appointments. We were able to talk to a "Wellness Advisor" (helpful, but not extremely so) and dial in a few products that should help with sleep and pain in particular. The best part about the trip, really, was that we now know how the whole dispensary procedure works.

I have been "dosing" with hemp-derived gummies from a local smoke shop in the village near our home. I enjoy them and will continue to get more. Last year, well before I got sick, I was vaping some of those same hemp-derived products. I ended up with a fairly persistent cough at the start of this year, though, and I suspect that it may have been the vaping. My primary care doctor, who certified me for my medical marijuana card request, doesn't agree with me on that. Also, the product we've been buying there supposedly has really high testing standards. I might try vaping again, but I'll do so cautiously.

For anyone who doesn't use these things, hemp-derived is typically less potent than marijuana-derived, meaning that dispensary-grade THC and other cannabinoids give you more bang for the buck. Also, vaping (and smoking) is a faster acting delivery system than edibles. Vaping (and smoking) starts reacting and dispersing the moment it hits your lungs. Edibles have to get through your system to your body's filtering organs before they disperse. I like the faster reaction time of vaping (or smoking) but I sure didn't like that persistent cough. I had it for months after quitting vaping the first time!

Why do I need a medical marijuana card if I've been getting perfectly good, hemp-based cannabinoids from a smoke shop that's five minutes from home? The potency difference is one thing. There's also a special Medical line at the dispensary and it's a much shorter line! We paid very little in tax for what we bought, too. So, yeah, some distinct advantages. 

One last thing. I'm starting to make private "Ride Notes" for the various cannabis products I've been using. Yes, as nerdy as it sounds, I'm taking brief notes on the efficacy of the gummies and such. I have always wished that I did something like that with all the hundreds of different single malt Scotch whiskies I've tasted over the last few decades, but I never started, thinking I'll simply remember how I felt about what I drank.

The Break That Really Wasn't

As previously mentioned, my next chemo infusion got pushed ahead to August 6 so that I could get two weeks of radiation treatments to my hips. Those treatments were described to me in the mildest terms aside from warning me that I would probably feel more fatigued toward the end. I was looking forward to another chemo break where I would feel well enough to get outside more and do a few things.

Unfortunately, while I might be over the worst of the chemo side-effects at this point, the radiation treatments are still keeping me down.

Not only did the radiation start to increase my fatigue after only one week of treatments, but they've also caused my legs and hips to feel as though I've done too much... without actually having done much at all. Right now, almost constantly, I feel like I'm suffering the effects of taking a really long, strenuous hike up a mountain. This despite not being able to even walk a mile at any point during the last six or seven months.

You know that feeling when you encounter really crappy weather during a planned vacation? It's kind of like that right now. I am definitely feeling a break from the hellish side-effects of chemotherapy, but I'm still couch-bound from the side-effects of the radiation I'm getting.

Church

I was having a conversation with a dear old friend, recently, and we hit upon some things I wanted to add to this journal.

Although I was raised in a Christian family, I have been an atheist for many years now. Probably decades. However, I often tell people that nature is my church. I never feel more at peace than I do when I'm out in nature. The weight of the world just lifts away every time, effortlessly. This is why so many of my journal entries have made it seem like all I'd really like to do is spend more time outside.

Music can do the same thing, if I fully give in to it. What I mean by that is distracting myself from either of those pleasures by doing things on my phone or computer (for example) means that I'm not being fully present in the moment. For any of this to "work" you have to be willing to cast off the distractions and just be.

If I adhere to any set of "conventional" beliefs, it's that of Taoism and Zen Buddhism, which I discovered in college back in the 80s. A cornerstone tenet of these is the desire to live in the present moment; that worry (future) and regret (past) are counterproductive to happiness and can even be destructive. Nature and music both put me firmly in the present moment without much mental effort on my part. They make it easy. I love that about them.

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All that said, many people who do adhere to a religion have wished me well and have told me they will pray for me. My atheism does not render any of those kind thoughts null and void. As far as I'm concerned, there is no wrong way to wish someone well. Anyone who offers to pray for me is being as kind to me, within their own beliefs, as anyone wishing me well in more non-religious ways. Love is love. Kindness is kindness.

Half Full or Half Empty?

We are officially "half way through" this horrid chemotherapy - three weeks after my third (of six) infusions of Docetaxel. I really resisted saying that I was "half way through" right after I had the third infusion because the infusion itself is the easy part! It's what happens in the ten days to two weeks after the infusion that puts me through a kind of living hell. 

Now, three weeks after an infusion, I'm still weak and tire easily, but I feel so much more human. At about this time in each round, I start forgetting where I left my cane because I just don't need it as much. Taking showers doesn't feel like I've just run a marathon. I have enough energy that I can help with things like dishes, laundry, etc. I'm able to back off with the oxycodone at night because gummies alone (sometimes with a couple ibuprofen) get me settled, comfy and relaxed. 

In other news, I was recently informed that my PSA (Prostate Specific Antigen) is now down to 1.3. It's the main indicator of prostate cancer and "normal" for men my age is anything under 4. Not only am I thrilled to now be well within the normal range but I keep remembering that my PSA was once over 100. My treatments are definitely working. 

Although I've only had two radiation treatments for my hips so far, I'm grateful that the treatments are quick, easy, and completely painless. I did notice a leeetle beeet of tenderness in my left hip the afternoon/evening of the first zapping, but it felt pretty normal in the afternoon/evening of the second one. No sign of Superhero or even Supervillain powers so far.

Hoping to Become a Superhero

 It looks like I'm taking a short break from chemo whether I wanted to or not.

After weeks of waiting for my health insurance to cover a short regimen of radiation to my hips, the approval finally came through. We visited the Beloit Cancer Center today for a kind of scanning/targeting appointment. Starting tomorrow and for the next ten working days, I'm going to receive brief radiation treatments. The radiation oncologist conferred with my oncologist and it was decided that they don't want me to have any chemo treatments while I'm receiving radiation. I'm definitely okay with that. 

I think I mentioned in a previous post how we had moved my next chemo from 7/23 to 7/30 to give myself four weeks before the next infusion. This new schedule of radiation treatments will end on 7/31, so my next chemo infusion has now been bumped from 7/30 to 8/6, giving me five weeks before my next infusion. 

How did this short radiation treatment come about?

Early on in this journal, I mentioned that the cancer had spread to my hips, spine, and a couple other places. I already had some slight bursitis in my hips, but the cancer attacking them made them hurt much, much more. My need for a cane to get around or for oxycodone to help me sleep at night were both largely due to how bad my hips were feeling. The palliative care specialist that we've been working with suggested that a short regiment of radiation to my hips should relieve a lot of that discomfort. I was all for alleviating that pain, so here we are.

Since many a superhero story starts with the protagonist getting irradiated, I'm looking at the next ten days as having ten chances to become a superhero. I'll be sure to write about any progress made in that direction.

I'm no doctor, but...

I'm no doctor, but my speculation about this round would appear to be correct. I'm still in the throes of the "very bad days" and, to me, they seem much more like how I felt during the first round than the second one. I can barely put into words how horrible I feel right now, and it's been this way since at least Thursday.

The big difference, as far as I'm concerned, was jumping right back into chemo after three weeks instead of waiting at least one more. (My body had five weeks to bring itself back to some sense of normal before my second round. See previous post.) I've decided that's going to change, going forward. I'm calling this particular shot, so to speak.

We've got two weeks of radiation treatments tentatively scheduled for my hip pain, and the doctors agree that they don't want that to happen while I'm at my chemo worst. If we can start those during what would be my third week of this round, the two week course of radiation would push my next infusion out to a fourth week. That should help. 

We tried to firm the radiation plans up this week but, with the 4th of July falling on Thursday and no one working at the Cancer Center on Friday, we won't know if we can work this out until we make some calls on Monday. Ideally, we'd like to start the radiation treatments around July 15, pushing the next chemo infusion from July 23 to July 30. If that doesn't work, I'm certainly not opposed to pushing it out yet another week. 

Regardless, I'm no longer going to do any chemo more frequently than once a month. When we had to postpone for a couple weeks before my second round, my oncologist kept saying that a week here or there wasn't going to make that big a difference. I plan to remind him of that. I need that extra week to help me survive the week from hell that hits me shortly after infusion.

Dancing With A Fallacy

After reasonable blood test results on Monday (yesterday) we were 'on' for my third chemotherapy infusion today. Thankfully, it went without a hitch. 

However, I want to point out, for reasons that will be more obvious in just a couple seconds, that it was five weeks between my first and second infusion whereas it was only three weeks between my second infusion and third one. I've been scheduled to have them every three weeks, but we delayed the second infusion for one and then eventually two weeks. 

The reason for the emphasis on the gap in time here is that I started to feel something unpleasant today, after we got home from the infusion, through the late afternoon and into the evening. It was pretty low level but, again, I've never (okay, yeah, in only two rounds so far) had any kind of reaction the same day as the infusion! I had this "chemo vacation" that created a five week gap between infusions. This gave my body time to clear more Docetaxel from my system, so that my second round seemed less intense.

The problem with my hypothesis is that, if correct, it could imply that an only three week gap now will lead to a more intense third round. Okay, okay... logically, I'm dancing with the fallacy of the inverse here. (Shout out to my fellow math nerds!) I used the word "could" just above because if a longer gap leads to a less intense round, it's not necessarily true that a shorter gap will lead to a more intense round. 

...not necessarily true...

It doesn't rule it out, either! 

Time will tell, I suppose. 

Meanwhile, I apologize for bringing the math nerd in me out to dance!

One of my gummies had kicked in when I wrote this. 

I might delete it if it doesn't make sense to me in the morning.

Anyway, we're off again. 

Stay tuned for more of the "adventure".

Reasons To Be Cheerful, Parts 1-6

Not long ago, I wrote about trying to find happiness and joy in little things, and how that might be much harder to do when I'm in the throes of my worst days with chemo side-effects. To that end, I've tried to keep track of some things that make me happy even while at my worst... 

1.    I am continually so very grateful for my loving wife, who has taken on the role of caregiver in this situation. The things that she does for me every single day are too numerous to list, yet she continues to do those things without the slightest hint of frustration with me. Her care and concern for me is a love language, loud and clear.

2.    I'm grateful for my oncology nurses, who deal with this disease in people all week long and still manage to greet us with smiles and upbeat conversations every time we see them. I don't know how they do it. As you can imagine, their attitude is infectious.

3.    I'm grateful that my overall reactions, this round, were generally 10-15% better than they were during the first round. I feared they would be worse.

4.    Although I'm not grateful that most of my hair has fallen out, I am very pleasantly surprised at how much easier life is by not having to wash, dry, and comb a head of hair. I'm less happy about the loss of my beard hair but none of my beard hair is growing so I don't need to shave my face and neck. Another plus.

5.    I'm grateful I'm no longer oily! People warned of extremely dry skin when undergoing chemo. However, I have had particularly oily skin since puberty. Instead of the chemo giving me annoyingly dry skin (okay, a little bit on the arms and legs) the effect on me has simply been to dry up the oil my skin was producing. I feel cleaner, less sticky, and don't feel like I need to shower as often as I did before.

6.    I bought a new cane and I love it. I was using my wife's old aluminum cane which had flowers on it and a foam rubber hand grip. Once I realized how frequently I was going to be needing a cane in the next few months, I decided to buy myself a classy, handmade, oak cane. It's super comfortable in my hand, weighted just right, very stable, and looks classy. I love it so much that I want to use it even when I don't feel like I need it. 

 

Pain Relief Winner

One of the biggest problems I've been having with the worst days of the chemo side-effects is not being able to get comfortable enough to sleep. Soreness and joint pain seems almost amplified once that Docetaxel kicks in. The problem then snowballs because, if I don't get enough sleep, then I feel even worse the next day.

Alternating ibuprofen and acetaminophen seems to work pretty well when I'm not in the middle of the worst days, but the small amount of experience that I've had with all this so far tells me that even taking both together won't help me get comfortable enough to sleep. Back before the chemo started, I was prescribed some hydrocodone (5mg plus some acetaminophen) by my urologist. Unfortunately, it has never done much for the pain nor has it made me drowsy. I just gave up on it.

After losing significant sleep this round, we called our palliative care specialist to see if she knew of anything that would help. She prescribed some oxycodone (7mg plus about the same amount of acetaminophen) and I just started taking one before bed two nights ago. 

WHOOO BOY!! ... All codones are clearly not the same! This oxycodone kills the pain and puts me out like a tired little baby. I still have some minor sense of discomfort in some of the places that give me trouble, but the oxy masks it all very well. The last two nights, I've had the best sleep that I've had in weeks! Even when I have to get up to use the bathroom, I get back in bed and I'm out again like a light! Good stuff, I'm tellin' ya! 

I do know that this is also more addictive. I plan to be very careful of that. Honestly, though, I really only feel like I need this oxy (one pill a night) during the really bad days with chemo side effects when my joint and muscle pain/discomfort is at its worst. I think I can easily return to the over-the-counter solutions on my more "normal" days. 

I just had to post about this because I'm blown away at how different oxycodone is from hydrocodone. 

Is there a downside? The oxycodone gives me really bad cottonmouth during the day. I don't care for it, but it's a worthy trade for all the good it does me.

The More Things Stay the Same

I'm pleased to report that, although my reaction to the Docetaxel infusion did seem to start a day earlier than during the first round, I fared no worse during the last nine days. I am grateful for that.

Many of the side-effects that I suffered through in the first round came back to make me suffer through them again: extreme fatigue, extreme weakness, soreness from the waist down, body aches and discomfort, headaches, and stomach/intestinal issues. However, there were a few side-effects that gave me a break this round. I never got much of a rash on my face and scalp. Peripheral neuropathy (tingling sensation) was noticeable for a few days but not anywhere as bad as it got last time. The same can be said for the sensitivity inside my mouth and nose. Also, I had many fewer strange muscle spasms and restless leg syndrome. 

There's a part of me that wonders if this round was "better" than the first one because the sensations that I was feeling were no longer new and therefore no longer as scary. However, I really do believe that the intensity of many of the side-effects had decreased this time around. Maybe a combination of the two made this a slightly easier ride. 

That said, though, I still felt like death warmed over on the worst days. I wouldn't wish that feeling on my worst enemy. About 24 hours after infusion, I could tell my body had been poisoned. (Sorry, but that really is the best way to phrase it.) Starting about 48 hours after infusion, I felt like absolute crap. It lasted for 5-6 days after that. I'm writing this at the end of Round 2, Day 9 and today was honestly the first day I started to feel like myself again. 

What's new? I'm so glad you asked. I've encountered a new side-effect that is baffling me. You know that feeling you get in your body when you get the chills? That kind of tingly feeling that you feel inside your body when you get the chills? That's happening to me at the most random times! Sometimes I can just feel it in one leg and/or butt cheek but sometimes it's both. It's always below the waist, though. Also, lest you think that maybe it's happening because I simply get cold... we've had a heat wave for the past week, and this stuff can hit me in the middle of one of my now-fairly-regular hot flashes. 

That's got to be related to the other "nerve issues" I've had, like the weird muscle spasms and the restless leg syndrome. However, unlike those, this one strikes me as kind of humorous. I hope the experts don't eventually tell me that this is a very bad sign.

We're On Again (unfortunately?)

The second round of my chemotherapy started with an infusion of Docetaxel on the afternoon of Tuesday, June 11. 

I had no allergic reaction at any point that day. Using my documented reactions after the first round as my only precedent, I didn't really expect to be writing about any reactions until Thursday.

However, after I woke up today (Wednesday) I noticed that my legs felt weak. It really felt like I needed to use my hands to help lift up my legs to get socks on, for example. Stairs have become more difficult. In addition, as the day went on, I started noticing a now-familiar tingling(?) sensation in my mouth. 

All this tells me is that the Docetaxel is kicking in. I did not have a miserable day today, not by a long shot. Tomorrow is anyone's guess.

What I Did On My Chemo Vacation

My second chemotherapy infusion was originally scheduled for May 28. As I mentioned in a recent post, that was postponed until June 4 because my liver enzymes were too high. What I haven't written about is that my bloodwork kept showing elevated liver enzymes so it got postponed again until today, June 11. 

If there's any good reason I haven't updated this blog in the past two weeks it's that I've been feeling relatively well and the weather has been wonderful! 

During these precious (three in total) weeks of "vacation" from the side-effects of chemotherapy, I actually felt even better than I did prior to starting chemo. This looks like a sign that the other parts of my chemotherapy (especially the ones designed to decrease/block my testosterone that I take orally) are really doing their job right now.

When the weather has allowed, we've tried to be outside. We managed to catch up with several dear old friends out in our garden, for example. My wife and I have had picnics in local parks and have even managed a short walk here and there, and I even managed to get some more tree measuring done. That last bit involves flying my drone, something I haven't had the wherewithall to enjoy since winter. My wife has been thoroughly enjoying working in our gardens this spring, and I've been a beneficiary to all the wonderful life, color, and beauty she has brought to them. They're thriving!

I still don't think I have the energy to do any long hikes, bike rides, or kayak trips. You can bet your patootie, though, that I'm doing as much as I can handle right now. I'm even reasonably productive inside the house on the few rainy days we've had, something I really wasn't before or after the first round of chemo.

Not knowing that I was on my last day of this "chemo vacation" today, a dear old friend sent me this message: 

"Hoping that small things are making you feel some joy." 

Absolutely. That's right in line with what the late, great Warren Zevon said when David Letterman asked the dying Zevon if he had any advice: 

"Enjoy every sandwich." 

I have been trying to live by that since my diagnosis, but never more successfully than in the last three weeks. All good things must come to an end, though, right? 

My chemo infusion for today was not postponed and I just started the second round with an infusion of Docetaxel this afternoon. The real test of ones resolve for the quotes above happens when the going gets rough. I expect things should start to get rough for me on Thursday night or Friday. I hope I can still find some joy in small things when it kicks in. My friend's kind reminder to me couldn't have come at a better time.

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.