The Chemo Diaries: The Worst Day

With chemotherapy, there is one thing that is certain from cycle to cycle: there is always a dance between the predictable and the unpredictable. Which is to say, much of what a patient goes through can be anticipated, but there is always the possibility of a subtle or surprising change. We plan out our schedule as best we can based on previous experience, but sometimes — perhaps every time — we need to roll with how our bodies react.

Breakfast at my desk
Breakfast at my desk

I had my infusion on Monday (as is my preference). For the past year, it has been safe to say that Thursday (today) would be my “worst” day. I should be feeling the effects in my head and my gut right now, full force; I should be tired, irritable, woozy, even slightly sick to my stomach. I should be curled up on the couch or wanting very much to be there. But I’m eating a bagel at my desk and typing this and ruminating on going out for a burger. And I’m doing the household laundry, a whole week’s worth, but that’s another story.

My last chemo cycle was pretty close to normal, but I started feeling crappy a day early and finished feeling crappy a day early, all more or less. It improved that weekend, because I was more active and felt better by Saturday. I like that as a trend and hope that this weekend is quickly cleared up — especially because the weekend after my next infusion has a camping trip clearly written on the calendar. This is a precedent I can get behind. Yesterday, however, rather than having me feeling crappy a day early, I barely felt crappy at all. It is certainly enough to give me pause. But there may be a very obvious reason for why I’m feeling better (or at least less ill) this time around.

Dealing with the cycles

In my recent visits with my oncologist, one of the topics we’ve discussed has been exercise. I’ve got a good friend who inspires me with his workouts, keeping to his regimen in spite of his chemotherapy treatments. When my neighbor was getting treated for her leukemia, which included more frequent and higher intensity infusions than my own, she never missed her Pilates sessions or her long morning walks. But the treatments sucked the energy right out of me, left me too fatigued to work out, much less work at all (and by that, I mean for a time I could barely function). Fatigue begets fatigue, and after a while even though the chemo was no longer nailing me to the couch so tightly, my overall energy levels were lower because I had been slowly getting more and more out of shape.

A couple of months back, I realized that I could probably begin trying to shed a few extra pounds, as well. Although initially it was exceptionally important for me to focus on gaining weight — preferably healthy weight, mind you — I’ve been at a fairly level position with my treatment for long enough that it wouldn’t hurt for me to trim up a bit. Even without my old strength and stamina, I’d like to get my body a little closer to what it was like about two years ago, when I was just about to begin this interesting process of discovery, diagnosis and treatment. So I decided to push myself a little more rather than follow the protocol of resting and taking it easy during the tougher days after my infusion.

That meant going ahead and scheduling things on days I might otherwise have kept my head down. While in the past year or so I have occasionally gotten up and about to take a walk or otherwise get out of the house during my infusion week, in the last couple of months I have done crazy things like driving across town to meet my accountant on my “worst day” or, just generally deciding that I wanted to have some fun and doing it. Case in point, this week:

After my infusion on Monday, I had a lot of errands to run, which was great because I still always have a lot of energy left after my infusion is finished. In fact, on the day of my infusion, I am almost always in peak form because it has been a few weeks since my last one and after that first week energy levels just continue to rise until the next infusion cycle. But Tuesday was the critical day. I’m normally exhausted on Tuesday, mainly because of the steroids I take on Sunday, Monday and Tuesday to make the chemotherapy more tolerable. Steroids mess with sleep and, even more than the chemo, contribute to me being tired at the beginning of the week. The longer I am on these steroids, however, the more used to them I have gotten and the lower I have been able to take the doses. Knowing that Tuesday was still early enough in the week not to worry much about nausea or feeling achy, I decided to make plans for exploring downtown with my daughter and some friends, an activity that had been long discussed and long put off.

In general, I know that I’ve got a window of a few hours before I poop out, even on my good days. But I hate being limited all the time, so I try to play things more by ear and to make the assumption that sometimes I’ll simply be able to keep going longer. (Especially if I pace myself right.) Plans were confirmed for our city exploring adventure: carpooling with friends to the Metro, taking the subway into downtown, taking our own walking tour of some cool architecture, catching some cool eats, visiting my favorite bookstore and still managing to get everyone home by 2 o’clock. Then, if necessary, I could still crash, but not before having had a fun morning and plenty of walking about.

The way up...
The way up…

Of course, I didn’t anticipate the stairs.

One of the interesting things about the subway system is that, as one might expect, it is below ground. This means that there is a fair amount of going up and down involved. The train we took to get to the main hub was all above ground, but our transfer to travel downtown required tooling through Union Station and going down a few flights of steps.

Look, I've made it to the top!
Look, I’ve made it to the top!

Not bad, really; and going down isn’t such a big deal. Hardly noticed. On the other hand, the stop we chose to get off at required us to climb considerably higher to get out, in no small part due to the fact that we were coming up under a hill. It seemed somewhat daunting to look up the long stairway ahead. And then my daughter decided she wanted to run ahead, eschewing the convenient escalator that would have rendered the distance moot. In part not wanting to lose her, in part just feeling game (and quite possibly idiotic), I thought a run up those stairs would be quite in order and I took off after my girl in an attempt to overtake her.

I very nearly did, too. It was exhilarating. But at the top, I turned to my friend coming off the escalator with his kids and admitted that had almost done me in for the day… Not quite, fortunately; after a few seconds of walking on level ground, I realized that my knees had held up just fine and I had the energy to keep going. And keep going we did. First to look at some beautiful buildings both old and new, then fortunately over to Grand Central Market where delicious waffles, a great cappuccino and some chairs allowed us all to have a deserved break.

IMG_20160405_104413

And we were still back home by 2 o’clock. We managed to explore two different subway stations downtown, the big hub of Union Station and our local stop just five or so minutes from the house. It was a fun morning that amazingly did not leave me feeling exhausted. My feet were not typically swollen. My back wasn’t sore. And in spite of the steroids, I wasn’t even feeling particularly grumpy.

Wednesday came around and I stayed home, figuring that if I was going to get anything done, that would be the day. And yes, I was tired, in precisely the sort of way I would have expected from walking around for five hours and hustling my atrophied legs up and down hundreds of stairs. It was a good sort of tired, not merely fatigue; I also managed to sleep all right on Tuesday night, which was a bonus. But by mid-Wednesday, I was beginning to question whether I was going to have my “worst day” come early again. In March, my worst day was supposed to be the Thursday that was St. Patrick’s Day, and it was, really, though the Wednesday was harder than usual and the Friday easier (clearly denoting for me what I thought the new trend might look like). Things had seemingly begun shifting forward, boding well for the weekends that used to be marred by unsettled stomach issues and some combination of brain or body fatigue often into Sunday. Lately, I’ve been feeling good to go for Saturdays, happy to plan time at the zoo or whatever sounds fun, even if that really means just doing yard work and sticking around the house.

I ran some errands in the morning, managed to do some gardening and spent some time working at my desk. In the early afternoon, I did begin petering out. My big action was making a heaping pot of split pea soup. Then, after everyone was home, I ate a lot more of that soup than I probably should have. It was pretty amazing, though. Part of me expected that I was going to feel ill afterward. A pretty big part of me, actually; I was kind of just waiting for it to hit me. My stomach grumbled. I grumbled (mostly just about having eaten too much). I laid down for a while, feeling like I was just getting too tired, and the next thing I knew I simply felt a lot better.

It was weird.

I mean, I felt clearer in the head after a short rest — not that this would have been out of the ordinary for most people, but considering the timing I was dealing with it was not what I would have expected. I also felt like my food was digesting properly and without issue. That was great, especially after having over-eaten (again). It occurred to me as well that the food had tasted really good, quite unlike the St. Patrick’s Day meal I had prepared with about as much love and care as possible only to feel disappointed because everything tasted so darn bitter that day. No, this Wednesday had not brought my “worst day” early at all. I wasn’t feeling like things were barreling down ahead of schedule. In fact, I wasn’t feeling particularly bad at all. Slept fairly well that night, too. The worst of my typical symptoms that I have had to deal with this week was a touch of neuropathy last night and this morning, noticeable only briefly.

If today is my “worst day,” I’m grateful for it. I was a little sluggish getting up this morning, but not excessively so. I’m moving a little behind the beat. My appetite is just fine, though I am preferring to snack rather than eat a lot all at once right now. Really, the worst that could be said is that I am sleepy. And that is fine, because I am planning on an early night and an easy day tomorrow (with the option of busting out some fun at any point). I’ve managed to power through about five loads of laundry, clearing out the hamper. And I am confident that tomorrow, and certainly Saturday, will be great days. For one, there’s a chance of rain and out here in Los Angeles we really need that, but also all signs are pointing toward feeling pretty dang good. I like that feeling.

The final analysis of the week thus far tells me that action works. Being active — specifically being more active during my infusion week and even more specifically, increasing activity close to the infusion itself — appears to have a positive affect on the whole week. By being more active on the day of and the day right after my infusion for the previous number of cycles, I’ve seen the process of “getting back to normal” speeding up. Granted, my “normal” is not what it once was, but feeling more like my healthy self and less like I am about to come down with the stomach flu is a welcome thing. I may not be ready to commit to the full workout regimen at this point, but I am trying to stick with the increased activity levels that appear to be working. Wether it is helping my body to process the chemicals, pump out the toxins or just stay better oiled, I am pleased to that it is working. It is good psychologically, too, and we can all appreciate a few extra endorphins.

Now, to top off the day, it looks like the rain is coming early. I can hear the light pitter-patter outside my window right now. Certainly, this is the best “worst day” that I have had since my chemo began.

3 thoughts on “The Chemo Diaries: The Worst Day

  1. always good to keep up with you via your blog…and seeing in black and white that this month was better then others is good too…talking to you the past few days also did sound so much more “up” then usual for this time of “after infusion”…yay…now go forth and keep exercising…

  2. It’s great that you were able to have an adventure. I hope you keep having good “worst days”. I know your positive attitude makes a difference.

    Can I borrow your cap?

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