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.

✦ ✧ ✦ ✧ ✦ ✧ ✦ ✧ ✦ ✧ ✦ ✧

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.