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.