(Not So) Side Effects

If you follow my Facebook or Instagram you might get an impression that what I’m going through right now is less than pleasant, but that I’m also highly functioning and cruising through this whole chemotherapy process like it’s just an episodic interruption every few weeks instead of a consistently debilitating condition. I’m mostly to blame for this perception as I tend to celebrate my victories and only occasionally talk about the physical downsides to all this so as not to be a whiny, sympathy seeker. But that perception is skewed, because although I AM highly functioning and doing my best to curb the negative aspects of all this, it’s really not mostly clear skies and spring breezes, and it’s important that I make known some of my lesser physical problems for those that may be facing this or face it down the line…or even know someone going through it.

So yeah, I ran 10 miles yesterday. And it was AWESOME. Sort of. It actually hurt…a lot. A LOT A lot. It was probably the slowest and most painful 10 miles I’ve ever run, but I set out on a 5 mile out and back course and was determined to finish no matter what I encountered along the way physically, but I wasn’t expecting the pain in my feet to be SO intense. Oh, and it turned out that it was like 85 degrees with some ridiculous heat index to match, so that didn’t help either, but that was external and not related to cancer.

Anyways, the pain I felt on that 10 mile run was a direct side effect to my chemo treatments, of which these “side effects” are taking front and center to cancer, more than just hanging out on the side. This specific one I dealt with on the run is called Hand and Foot Syndrome, which has been making itself known during my past two treatments and is related to the 5FU treatment I get during infusion and the Xeloda pills I take for 2 weeks straight. The pain in my hands is tolerable, though not an enjoyable sensation to wake to every morning. My fingers are extra sensitive to both touch and temperature, most notably cold, and have experienced discolorations on specific pressure points. The sensitivity gets more tolerable by the afternoon, but right after treatment it can be a big issue with riding my bike into downtown and having to shift or brake. The feeling of pins stabbing the ends of my fingers shoots into my hands everytime I exert pressure on the levers, making for precarious braking. I just try not to shift while this happens. But even as that pain lessens throughout the days away from treatment, the sensitivity still makes for trouble as I struggle to open small wrapped candies, unscrew my tube valve cap, etc. Then there are my feet.

If I don’t take extra special care of my feet, the pain can get out of control. I learned this the hard way walking around in flip flops during my vacation two treatments ago, as by the end of the week I was essentially walking on a foot full of blisters and couldn’t even go to the beach the last day as the effort would have been excruciating. I started wearing shoes around the house and doing everything I could to protect my feet, which was working…until I started upping my mileage. Hand and Foot syndrome makes your skin A LOT more sensitive to rubbing and increases the chances of blistering, so although sometimes it FEELS like I’m walking on a foot full of blisters, other times I actually AM. This past week, with my increased mileage, I started getting blisters on my feet, but I assumed it was from running on the treadmill, which tends to both get more sweat into your shoes and slightly alters your gait enough to rub where your feet don’t normally rub, all leading to blisters. But then they got worse and worse and each night I find myself spending time popping blisters or trying to coax others from forming, to little success. Then the sensitivity from the continued pounding increased.

So I had it in my head to run 10 miles and although I had on a new pair of running shoes with sufficient support, and although I was running outside, and although I made it to my turnaround at mile 5 in relatively good shape…it started to go downhill from there. By mile 6 the balls of my feet were yelling at me. By mile 7 they were screaming at me. By mile 8 they were silent…because they lost their voice. The pain on the balls of my feet was SO INTENSE, like each step was landing on a pad of blisters…but I wanted to finish without walking, badly. Very badly. I just had to keep going…so I did. And I made it to mile 10, elated to both complete the distance for the first time since diagnosis, and to be able to stop. I walked to the lockers, took off my shoes to take a shower and at the first step was suddenly stopped in my tracks. Now that the adrenaline from the run and pain response had subsided it now felt WORSE than walking on blisters and I very, very, very gingerly made my way across the tile floor to the showers. And that’s how the rest of my morning went. I carefully walked back to the lockers, got changed and carefully walked up the stairs one by one. I then had to lean on my bike just to make it to the coffee shop and after sitting there figuring out how I was going to ride home on such painful feet, I gave in and called a friend who came and picked me up. I spent the rest of the day in bed hoping to keep the pressure off my feet and heal them up for the next day.

And now, well, I’m still popping blisters (pretty huh?) and pampering my feet so that I can get back to training as quickly as possible, my only hope being that the syndrome dissipates quickly now that I’m starting my “off week” of chemo pills, of which the symptoms do tend to subside. By the end of the week I hope to have continued training, but also lessened the symptoms, especially considering I’m riding the Century on Sunday!

And that’s just the latest physical setback I’ve been dealing with. The one that has interrupted my life the most this time after treatment, but of course, that’s just one.

There is still the incredible sensitivity to cold foods or liquids right after treatment, keeping me from ingesting anything cold for at least a week and a half.

There is the tongue numbness that follows treatment.

There is the overall gross taste in my mouth that comes and goes.

There is the low-level, but consistent, nausea that has sat in my stomach after the last round.

There is the light-headedness that threatens to topple me if I stand up too quick from bending over or laying down.

There is the awful feeling of my stomach contracting agains the food moving through my intestines on a daily basis.

There is the mild constipation from the nausea medication that gets in the way of daily plans without warning.

There are the dried eyes that makes focusing on text damn near impossible and opening my eyes upon waking downright painful.

And so on.

It’s just….not pretty. Granted, the “off week” is the best where I’m the farthest from treatment and the worst of the effects are lessened or gone, and anything related to the Xeloda pills is waining too, so I hope that pattern continues this week, but that is only part of the cancer picture.

Yeah, I feel VERY fortunate to be as functioning as I am. To be able to ride my bike with strong effort, run further and further (not necessarily faster yet…YET), and generally go about my days without too much restriction, but that doesn’t mean nothing physically troubling is going on. Something is ALWAYS going on. It’s so consistent that some of these side effects now barely register…they are just part of my life, as if everyone experiences them, as if they are supposed to be there. And that’s kinda depressing. Ultimately though, I do know these are temporary, and I can only hope to keep some of these from progressing as I figure out how to adjust to their intensity with each treatment.

Then somewhere down the line I hope to experience a continued progression of side effect minimizing until each one withers and dies completely, where I can focus again, swallow cold liquids, not always feel generally gross, and most importantly, run without concern of destroying my feet in the process. Until then, this is just a part of my daily life I have to figure out how to manage and not let consume me or my moods. With that in mind, you can expect me to keep celebrating my victories and suppressing my struggles.


5 responses to “(Not So) Side Effects

  1. You’re being injured by the chemo, Scott. These are the ‘side effects.’ You have to treat them with the respect of any injuries. I know as a runner and as the strong man that you are that this is really hard to do, though. You’re doing a great job and these chemo effects will be temporary, I assume. Save yourself up for when you are off of them. You’re very strong and it will be great to see you up and running fully again at that time. Hang in there.

  2. Hi. Just stumbled onto your blog. I read a few posts. I became a vegan in Feb. I am 51. I have been a runner since 1976. And have run a 14:45 3 mile, and 32 min 10k…as a young runner. I guess after reading “The China Study” and seeing “Forks over Knives” I was just assuming that being vegan can stop cancer and prevent like 97% (that aren’t genetic) of cancers, so I am disappointed you have it. Your 10 mile run was amazing to read, you are truly BA. I don’t really pray but I will keep you in my thoughts and when I struggle in a mile I will remember your 10 miler and how courageous you are. To me that run you did is more impressive than a 5:30 mile average marathon. Hang tough my new friend keep pushing and you will get a second wind I promise.

    • Hey Don,

      I sort of responded to your blog in my second to last post. Thanks for your words of encouragement…I appreciate them all!

  3. Scott, glad to read you are keeping at it, even though saner folks may argue hard physical exertion to the point of damaging yourself is counterproductive. I’m not one of them. Having been a professional soldier that put down my fair share of hard miles in combat boots, which are not forgiving on the feet, under harsh conditions I definitely recommend doing some experimentation pre-treatment on your feet before hitting the pavement/trails. If you can get to treating your feet when they are near 100% healed, tape the living shit out of them. Then powder your naked, taped feet, then powder again once the socks are on, then powder your shoes. Your first few steps had better have powder puffing out of the mesh in your shoes or you didn’t use enough. Seriously.

    It may not help much at all since I have no idea what these “side” effects are doing to you that’s different from “normal” life, but tape and powder are every ground pounding soldier’s best friend. It may be worth a shot for you too. Techniques like this eventually got me to having no hot spots or blisters after very long forced marches with 90lbs of gear on in very wet conditions.

    • Hey man, thanks for all the suggestions regarding foot care. It’s Friday now and since being off the chemo pills and taking care of things with Moleskin I think I finally have it under control….for now, but I need to be careful after the next round. I’ll keep all these suggestions in mind…thanks!

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