I said I wasn’t going to write about cancer anymore, but the after-effects have become overwhelming and it’s time to share a little more.
So here it is. My back catches on fire.
Ok, I mean that figuratively, because this “burning back” feeling has a name: neuropathy Neuropathy is common in chemo patients– about one in three get it. Think of it as pins and needles, only the pins are sticking you from the inside and the needles are hot enough to push through steel.
It comes in attacks, and there’s generally no way to know when. I have a few indicators: I’m more prone to neuropathy when I’m hot. Even having hot soup can bring on an attack. I get more attacks when I’m tired. I get it if I’ve been walking. So as long as I don’t move or go to sleep, I’m fine.
Now, I’ve had all sorts of side- and after-effects from chemotherapy and I’m happy to make the trade in exchange for the not-having-cancer bit. However, I’m finding the nerve damage to make for a terrible Catch-22.
Some background: During treatment, cancer docs want you to keep eating. This is to keep the nausea at bay. Also, nearly every local loved one is delivering casseroles, soups, baked goods, and lasagnas. Unfortunately, eating is the last thing you want to do during and after chemo. But they recommend 2,000 – 3,000 daily calories and avoiding an empty stomach. You know that lightheaded, skipped lunch, nauseous feeling when you’ve slogged through a busy day on coffee alone? Imagine that times chemo.
But they say you need to eat. And you can eat anything. Really? 3,000 calories of Ben and Jerry’s? OK, you’re the doctor. So I ate. I ate without joy. I ate in bed. Not good.
Truth: I’m heavy. I’m 5’7” and weigh 230 lbs. Not quite Homer Simpson, but more than the standard, doughy “Dad Bod.” My ideal weight is 150-175 lbs. When I found out I had cancer, I weighed 226 lbs. When I was finally declared cured, I weighed… 227 lbs.
I put on weight while I had cancer.
If I can’t lose weight on cancer, what chance does Weight Watchers have?
So now, with “remission” and NED (no evidence of disease) notations in my medical chart, it’s time to get back into shape. Only– the neuropathy. My energy is low. The cure? Exercise. The bad cholesterol is too high, the good one is too low. The way to reverse that? Exercise. My blood sugar needs to come down. The remedy? You get it.
Except as soon as I start moving, my back, legs, and shoulders start a conflagration suitable for a Fourth of July bonfire. Get your marshmallows on your sticks, kids. Stevie’s on the treadmill.
Oh– did I mention what else helps neuropathy? Exercise.
I’m taking a fibromyalgia medicine they give those poor folks who are in a constant, unrelenting nerve pain that I cannot imagine. I get bouts of the fire needle attacks, but they go away. To feel like this all the time? Insane. I’d rather vote Trump.
I’m going to try swimming: cooler water, less pressure on the joints, less overheating. Maybe it will do some good. My Body Mass Index indicates I’m certainly buoyant enough.
The list of things that happen after cancer is getting long and, unfortunately, interesting. It may be time for a book. Working title: “Cancer: So, You Think The Disease Was Bad…”
Ha! Well said Steve. According to the literature side effects can continue for up to 25 years. The post cancer has been so so much worse for me. And it is not just the physical issues – of which there are too many to list and some of which still require hospitalization occasionally even after 10 years. It is the emotional debilitation. It is crushing just when you need your best game. I actually just did a post on it over at Blog Woman!!! today (part 1 of 2). And there is little help available and what is available is inadequate, inappropriate (as in prescribing pills) and difficult to get.
Thanks so much for the post Steve, it is good to hear that we are not alone.
Thank you, Paul. I think at some point they should stop calling them “side effects” and just call them “life.” You’re right about the emotional issues – something we’ve tackled a LOT here, and something that is decidedly not mentioned nearly enough during treatment. You’re in something deep and awful, and nobody around you really gets it. We do, and we’re really glad you’re sharing your story with others. Important to let people know they aren’t alone when all this weird stuff happens after the cure.
Ugh. That is all I have to say. I often think ‘at least I’m not in pain’. I hope the swimming works out.
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