Every day that I’ve woken up since cancer, and every moment I’m alive, I feel this low-grade burning and aching sensation throughout my body, and it’s because of the chemotherapy that I went through many years ago. Chemotherapy induced peripheral neuropathy (CIPN) be thy name, and my primary symptoms have always been chronic fatigue issues. It took me nearly two years after my cancer treatments to notice this, long after any pain from treatments and surgeries were gone, and basic physical rehab was completed, that this low grade aching and burning in my body was a “new normal” that wasn’t ever going to go away.
I had a choice of either BEPx3 or EPx4 chemotherapy for my Stage IIB good risk testicular cancer back in 2011. I was seen at Memorial Sloan Kettering Cancer Center in NYC, and was personally in favor of doing the RPLND if I needed one. MSKCC favors the EPx4, which also reduces some of the risk of doing the RPLND surgery because Bleomycin isn’t used, so that’s what I went with. But that extra round of Cisplatin exposure compared to BEPx3 really did a number on my entire nervous system, and there’s not a day that goes by that I don’t “feel the burn”. I’ve just gotten used to it, but long-term studies have shown that testicular cancer patients who do BEPx3 tend to have a lower cumulative burden of morbidity than EPx4 patients, with the extra exposure to Cisplatin being the primary culprit. BEPx3 patients also have a very slightly higher but statistically insignificant cure rate, but it’s always been within the margin for error, so the two protocols have been considered equivalent.
It’s water under the bridge to me at this point, but this is why I generally recommend the more universally accepted standard of BEPx3 for good risk testicular cancer patients, despite having done EPx4 myself. It’s literally a matter of picking your poisons, and with my luck I probably would have been one of the ones that made it into the medical studies with terrible side effects from the Bleomycin drug.
All that matters is that I’m here, so I have no regrets, and what’s done is done.
My Chronic Fatigue has Been a Long road that’s difficult to maintain
I’ve come a long ways. For my first few years after cancer I woke up everyday just happy to be alive, but never felt like I had anything more than a half tank of fuel for the entire day. I really suffered physically in the aftermath of cancer, and emotionally. I “looked fine” but it felt like I had aged several decades, and it was demoralizing barely being able to keep up with my young family. Only I could feel this, and I struggled physically for years.
Related: Running From Cancer
I refused to accept that this was how I was going to feel for the rest of my life, so I took up running and pushed myself hard. I could never run more than a few blocks at a time for years, but my body finally responded and “rebooted” itself, and I’ll never forget the day when the chains came off and I finally managed to do a 5K run in 30 minutes, and without even needing any walking breaks. I was so overwhelmed with joy that I wept for 30 minutes in my back yard and texted a bunch of friends who knew of my struggles all too well. I’ve never been a good runner and probably never will be, but in that moment I finally felt alive and like I had just discovered the fountain of youth, thanks to years of running and pushing myself hard.
Trying to keep myself in good physical condition has always been my weapon against my chronic fatigue issues, but it’s very much a damned if you do, damned if you don’t affair. If I don’t exercise regularly, I’ll fall out of shape and feel like total crap. My energy levels will plummet and a lot of other things can tend to go south. If I do exercise regularly, I’ll be exhausted from working out and pushing my limits. But regular exercise serves to push those limits outwards and helps me to feel better and like I have more energy on average throughout each day. It turns out that keeping my body in “30-minute 5K ready form” is a pretty good fitness baseline for the point at which I’ll feel like I have all the energy I need and almost like a normal person.
Now about maintaining that…
Life Always Seems to Get In The Way
Our lives over the past few years has been crazy and chaotic, with so many twists and turns. We’ve had to take on a disabled family member full-time who has special needs, had to move into a bigger home that needs a lot more upkeep and maintenance, and got a dog just for good measure. I’ve also never been busier at my job, and have never had to travel more for work than I have in recent years, all at the same time. It all adds up and really takes a toll, and also tends to obliterate any attempts at maintaining a fitness routine. The past few years have been a blur, and it’s so easy to completely fall out of exercise and fitness routines or just not exercise at all, but I can’t allow that to happen. Every time it’s the same thing. I’ll feel fine for a few months after not exercising, but eventually my body falls flat on its face, I have no energy, no libido, no nothing, and just feel like a miserable lump.
The first part of 2019 was a great example. Despite a strong start to the year with a great new gym opening just down the street from our home, between March and April I was so busy at work and having to travel so much that I didn’t even make it at all. Between urgent business trips to one place or another, and then back-to-back week long trade shows in different time zones, by the time this busy period was done my chronic fatigue set in so hard that I almost couldn’t move through most of the month of May. I’d never felt so awful in my life, but forced myself to get moving again.
5K RACE TRAINING
It’s been our tradition to make our first beach trip of the year on Father’s Day weekend. We go to Rehoboth Beach, DE, and one morning a few years ago we woke up and strolled outside to see runners everywhere and a 5K race going on! We had no idea, but I had been into running, and William was still pretty young but wanted to race too, so we decided we’d do it the next time we came.
That was last year, but it always seems to be the same thing. A crazy work and travel schedule, and hardly any time to train or get to the gym. In fact, last year around this time I had actually quit our previous gym because it was too expensive and never had time to make it! I had also been traveling so much for work that I’d actually developed bilateral ear infections, so ran last year’s Rehoboth Beach 5K still on antibiotics and a steroid pack, and could only hear out of one ear. William and I both ran in the 32 minute range, but little did I know William was a little sandbagger and had so much more than the pace we had trained at, so this year it was on. :)
My first training run in May was a not too bad 34:24, and then I followed it up with a 33:15, and a 31:31 that I was really pleased with, but then things went downhill with a 32:53. I was struggling and couldn’t progress at all.
Detox Your Life and Get Enough Rest
I came to realize that my body was totally hooked on caffeine and dysfunctional without it, so that was the first thing to go. It was painful, but I went with just water for a week. A disastrous 37:09 run during that time, along with another that I aborted after a mile, serves to illustrate just how powerful an effect caffeine addiction can have on us and how awful withdraw is, but I felt so much better afterwards. I also cleaned up my diet and cut out all of the junky foods, went with a high protein breakfast, and usually a homemade wedge salad or something non-carby for lunch. I’ve always had a low metabolism, and can typically skip dinner and be just fine so long as I eat properly and the right foods during the day. I kept getting into the gym, on the elliptical, on the fitness bike, into a few spin classes and the dreaded stair machine, and also did some weight training. Before I knew it, I was back in business with a much better 31:14 the week before our race that actually felt good to run, and like I had more.
Another thing you can’t overlook is getting enough sleep. Our bodies need rest, and mine especially does whether my chronic fatigue has been acting up or not. Between all of the business travel, bouncing between different time zones, eating terribly and almost literally living on caffeine, and more than one hotel bed that was just plain rotten, massively disrupted sleep patterns and not enough rest was probably the biggest single contributor to my chronic fatigue meltdown the month after all of this craziness.
If you’ve just been through cancer treatments, don’t underestimate how much sleep you might actually need - I needed 9-10 hours per night my first few years after cancer! Turn the TV/computer/phone off, put the books down, and just rest. Even today, I can’t do the 6-7 hours of sleep per night that I could when I was younger, and before cancer. A solid 8-9 hours is what I need, and anything less than that will eventually catch up with me.
RACE DAY AT REHOBOTH
I wasn’t expecting much on race day not because of a lack of training or a good final run, but rather because of some mild food poisoning or a stomach virus that both my wife and I managed to pick up a day or two before our race. There’s always something! But as the race got going, I felt good, my pace was good in the 9:30 range, and just kept going. William tends to struggle on hills, but if there’s an actual race and his adrenaline gets flowing he takes off like a little rocket ship, and Rehoboth Beach is a flat course so I knew he’d be fast (he’s about 2 minutes faster than me on average).
I had to take a few very brief walking breaks, but other than that I was stoked with my sub-10 minute per mile pace, and ended with a chip time of 30:24 which was awesome. A 30 minute and change 5K! Hallelujah! And William, who’s only 10, did a 28:05! We were both pooped afterwards, but really pleased with our runs and our times.
Exercise Can Be a Big Mental Boost
Whether it’s running or any other activity, exercise can be a huge confidence booster when you’ve worked hard and struggled, but then see positive improvements and better results. That’s exactly what I felt getting back into my 30 minute 5K zone, and it’s encouraged me to stick with it and keep going for other races my son and I will do in the fall. Life is way too short to spend it feeling awful. I’m finally close to the state I need to be in, my work won’t be quite as hectic this year (that hasn’t been the case!!!), and our new gym is right down the street, so there’s no excuses for me. Let’s see if I can keep it together this year, finally hit my goal weight, and get a timed 5K run in under 30 minutes. If this big old barge that suffers from chronic muscle fatigue can do it, you can too.
See our full Rehoboth Beach Father’s Day 5K 2019 Race Photo Album here.
When Will I Do More Than a 5K?
People have asked me when I’ll do more than a 5K, and the answer is not any time soon. For starters, I don’t have anything to “prove”. Just being able to do a 5K in 30 minutes or less is a huge accomplishment for me, but there’s not a doubt in my mind that I can do more, and eventually I’d like to do at least a half marathon (13.1 miles) someday. But for someone like myself where the chronic fatigue issues are always lurking, it’s a lot more time to train, and a lot more time away from my family that I just don’t have at the moment. I can disappear and get a quick 5K training run in and nobody will ever know I’m gone, but disappearing for hours on end while doing half or full marathon race training just isn’t in the cards for me at this point. When the time is right, and other demands in life subside enough to free up the time, I’ll make it happen, and you’ll be able to read about it here. :)