When the parts don’t add up to the whole

So the day finally arrives when you’ve completed all the treatments and finished taking the endless pills and liquids prescribed over the endless months or years of your cancer treatments. Hooray! This is a great day and such a relief to be freed up from the rigid schedule of medicines and appointments! Fantastic! Now on to the business of regaining life and your body again.

What? Where did my body go???

Not only had I suddenly lost all the body fat that used to keep me comfortable, but I lost all — and I mean all — of my muscles. It was pathetic. I remember one day early on I had gotten on the floor for something and was unable to get myself back up again. It was truly frightening to feel that weak.

This is where I was after only one year into an almost three year process I’d be dealing with. I swore at that moment that this wasn’t going to be my permanent condition and I started to set goals. There were simple yoga postures and stretching that would help me regain mobility, and then eventually helped me gain some basic muscle strength. Then I moved on to using stretchy bands and small objects that had weight to wake the muscles back from their distant slumber.

And then I built on from there—indoor rowing for a few minutes, indoor cycling (also for a few minutes), and outdoor walking that started going a block or two and eventually a mile and more. Every little step since then has been an effort to ensure I’m building on the day before and making progress.

It’s a marathon during treatment, and it’s a marathon to come back again.

I’m one who likes to track progress and set goals using apps or spreadsheets because that helps me to see things in the long view and maintain perspective on my progress. It’s rewarding to set a small goal and then achieve it. Highly encourage using them. Fitness Pal, Garmin trackers, FitBit, or any other device that makes you feel motivated to stay in motion.

Despite this, it doesn’t mean the “bits and pieces” of me physically aren’t still objecting to whatever I try doing. I’m still dealing with cramping of feet or hands or entire legs (during the night this is particularly delightful), and have neuropathy in my toes in particular. Having enough protein each day — whether it is plant protein, meat, or protein drinks — has helped, as does taking magnesium at night. The spasms of your muscles even out and you can sleep better and wake up less achy.

Some of the other odd and weird and just plain annoying issues that continue to persist are:

1) Weight gain and loss — it sometimes has nothing to do with what you eat or don’t eat! Or how much you exercise. Sometimes the weight fluctuations are tied to several possibilities as outlined in this article. But it’s important to still talk to your healthcare contacts about how to manage this and ensure you can stay on top of shifts in your weight.

2) Cramping of muscles (myalgia) — see this article for suggestions on how to avoid them or reduce the frequency and severity. This can be a short term issue or might continue for months following conclusion of treatments. But with some exercise, plenty of water, and not over extending yourself, it eventually starts to reduce frequency.

3) Aching of joints (arthrialgias) — Pain is a common side effect of chemotherapy, and joint pain is no exception. Although it can occur anytime during treatment, it often appears afterward and is usually resolved in weeks to months.

Depending upon your treatment (chemo, radiation, surgery, etc) can also determine what those lingering side effects may be. But there are ways to help yourself and move past these over time. This article from Dana Farber is helpful for some basic ideas on how to manage what may just seem like odd changes in your body or sleep or sexual patters, but in fact could be related to what you’ve gone through physically. The mind may shelve things away, but the body never lets you forget, so it’s a good idea to pay attention to what you’re feeling and take advantage of the best means to recover.

I’m consistently reminded by my doctor that I’m only a few months away from the long road of chemo and steroids I was taking. Patience with my progress and my abilities is a continued mantra. For that, I haven’t found a solution but I’m pressing on and tracking what I’m capable of doing each week. When you look back over the long term, it becomes a very encouraging story!