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.

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.