What Cancer Treatments Have Wrought

Its all just fairly bizarre. I’m talking, of course, about Cancer Related Fatigue, which I happen to live with on a daily basis.

The point of this blog is not to troll the depths of sympathy from my dedicated and dear readers but to give them an insight into what cancer treatments do to the patient after the treatments end; life goes on (fortunately) though the collateral damage can be significant; in my case, it means fatigue.

To begin with, I probably shouldn’t have the amount of fatigue that I do. When I tell my doctors about my fatigue, I get the same glazed look and blank stare, and on to the next topic we go. Once when I showed my oncologist a book on Cancer Related Fatigue, he admitted he didn’t know anything about the subject. My other doctors are the same. In general, their view is that I shouldn’t be having these problems this long after my treatment has ended and – just maybe – it’s all in my mind or even I’m bending the truth so I can stay on disability and enjoy the good life.*

I assure you, that is not the case.

My fatigue does wax and wane; it is sometime better and sometimes worse, and it can flair up at any time. It is often completely debilitating. It completely mystifies me, and for the life of me I can’t make a clear line between cause and effect. Action A happens which leads to Effect B. No, it’s not like that at all. It seems to just do what it wants, for reasons only it understands, and the more I try to analyze it the less I understand. I will give you a good example. There are many times when I have slept well but, when I wake, I am incredibly fatigued, such that I can’t move – lifting my arm is a chore – and I just lay in bed like a lizard, completely still for a long, long, loooong time: still. The strange thing about this is that I’ve slept well; my body has been in a relaxed state for a long time so – logically – I shouldn’t have any fatigue. I shouldn’t, but I do.

So odd.

(Also, this situation is a canary in the mine: when I wake with fatigue, it’s a bad sign for the day.)

It is difficult to explain what bone numbing fatigue is like, and I myself had no frame of reference to understand it before I was diagnosed with cancer. First, fatigue has nothing to do with being tired. I can be completely rested but incredibly fatigued at the same time. The sleep system and energy system are two distinct systems. Second, cancer-related fatigue can be a low energy state but often means being without any energy at all. How can I depict this? A car can wait at a light, idling, and when the driver taps on the gas, it accelerates. In each case the engine is running. So, you can be watching a show on the couch (idling) and then get up and push mow the lawn (accelerating). Energy is available to draw from. I am different. I can be sitting at a traffic light waiting for it to turn but when I press on the gas, the car engine shuts off. I turn the key: nothing.  I’m stuck.

It’s cancer-related fatigue!

I clean up the kitchen, and I’m wiped out afterward. My kids are messing around in a good hearted way – just having fun – and I feel my energy drain. People talk to me and I have respond.  Problem: responding takes energy. Stores exhaust me, especially Walmart, as they blare out stimulation overdose on every aisle. Standing is often difficult, and when I’m out, the Earth seems to open up and swallow me; I just have to sit down. Gatherings of people with lots of people likewise drain me.  I love Church meetings but they can be dangerous. So can family gatherings and parent teacher conferences and visiting friends and so forth. Sometimes when I sit, I feeling the energy drain out of me onto the floor. It’s weird.

It’s cancer-related fatigue!

If I push through anyway (or have to do so due to the circumstances), I sometimes can dredge up energy from some dark place I didn’t know existed. This, however, is fraught with pearl. Later my body aches as if I’ve been hit with a crow bar. It’s weird. Even if I rest, my body still aches from every joint. If I keep going, I get dizzy, and at at that point it gets scary. I try not to go that far. When we start wading into these waters, everything is gray and all sounds are like fingers-on-the-chalkboard. I enter into survival mode, and cannot bear anything or anyone, even myself. Often I just want to go to bed and be done with the day, hoping tomorrow is better. Sometimes tomorrow is better, sometimes not.

It’s cancer-related fatigue!

In these times I am completely debilitated. I have to retreat to a low intensity, low stimulation environment, and that means my bedroom. I spend a lot of time in my bedroom when I am fatigued; I don’t have a lot of choice. In my bedroom I don’t sleep and can’t focus enough to work – no, I need something very low intensity and ultra chilling, so I can read a light book on – of course history – or play chess on my phone, or look at Facebook posts. I’ve started to play Euchre on my phone. Sometimes I’ll look at the news, if it’s not too intense.

Then after a while, I can come out. I find that sometimes I can reintegrate myself into human society but sometimes it once again is all too much, and back into the bedroom I go. We can at times split the difference: be out with the people for 20 minutes – actually being the father and husband I would like to be – and then retreating into my room for rest for 20 minutes. Then out for 20 minutes, like letting the lion at the zoo out for a bit to see the people, then back in my room (cage). It works – sometimes.

I really haven’t figured a way out of this, and I try to moderate my activities, which isn’t always easy with eight kids, a job and an active Church life. I will do a bit of light work and then rest, and then do some more light work and rest some more. It works on some level right up until the moment it doesn’t work, but then again I figure I can’t spend my entire life in my bedroom. I have to do something. Weirdly, at times I am in a semi-functional state – able to be with people and do a few things – but underneath I am fatigued, though just not to the point of being debilitated. At least not yet. And sometimes I can think I’m ok and life life as if I’m a normal person, but the fatigue sneaks up on me, like an assassin. Then I just have to excuse myself.

I often think that there is a switch in my body that is tripped by something, and who knows what that can be? I can be doing fine for a month and even in February of this year I remember telling my son how much better I was feeling. And I was. But then something happened and – click – dark days come. One time I remember working hard outside as if I was a normal person and – click – I soon found myself in the dank dungeons of fatigue, and for quite a while. But then I will rest aggressively and feel a bit guilty about basically doing nothing – but, hey, what can I do in this state? – and this low energy state will linger on until one day – click – I seem to have energy again; not a lot but I can talk to people. Be with them. It’s really nice: to be able to talk to people. It’s great. And now we are on the uphill leg of the roller coaster, and life is good.

It does happen.

In general we can compare my energy situation to money. If you are rich, you can throw your money around: buy an expensive car, tip hugely at restaurants, buy impulsively on Amazon. It’s all good. But if you’re part of the working poor, every cent has to be spent carefully, lest splurging on lunches at Taco Bell or Wendys means that you can’t pay your rent that month. So you pinch pennies. That is me: energy poor and so very careful!

So, you learn to live life with limitations and boundaries, and who likes limitations and boundaries? No one. In my 55 year old mind I still inhabit a pre-cancer 18 year old body and get crazy ideas, like to go hiking up a mountain with my teenage boys or to spend an entire afternoon cleaning the garage. But when I go to do any of this, I am reminded of my limitations and boundaries. Its like in one of those movies where the circular cage bars come crashing down around the main character, and now he’s caught. So am I.

Yes, things need done, and I have a whole list in my head, and there in my head it mostly stays. I try to prioritize as much as I can, but it’s hard to know what to put first when everything (and sometimes everyone) is screaming out to you. Everyone and everything wants something. I do manage to do a few things, and the rest? There’s an art to letting it all go, and revisiting the question down the road when perhaps some energy has come in, like a letter from a good friend.

But if I do happen to figure out my boundaries and stay within them, in the midst of my busy life, I seem just fine to others, and have you thought of going back to work full-time, they ask me? I can even be deceived myself: perhaps I can. I feel better, after all. Why not? Day after day it is good, but then again I have been a good boy. I have stayed within my boundaries. The truth, however, is this: once I step outside my boundaries, I meet the fatigue monster again. I then remember I now inhabit a very finicky body pummeled by cancer treatments, and the entire thought is just ridiculous.

The good news also is that after my initial treatment in 2007, I was better after about five years. It took all of five years, but hey: who’s counting?! I remember those days, five years out, when my body returned to something close to normal. I remember telling Nathanial, my son, “I have energy! This is like Christmas!” And it was, and I did have energy, this blessed energy: enough energy to get through the day but – on every one of those days – I was done with that day by 10 p.m. The day was over for me by then, but before that bewitching 10 p.m. time, energy was mine.

All that unraveled in 2014 when I had my first cancer re-occurrence and the treatment that followed: seven months of very difficult chemo, a lung operation then a second re-occurrence, which was treated with high intensity radiation (Cyberknife). It was the same cancer treatment lineup as in 2007, just in a different order: 2007 – surgery then chemo and radiation; 2014 – chemo, surgery and radiation. The effects, however, were the same. Everything I gained in those five years after my initial treatment I lost, and there is no telling how long it will take my body to recover. I wouldn’t think it would take more than five years and perhaps less, but we shall see.

Alas, alas, who ever said cancer was supposed to be fun? What did we ever expect from all these treatments and surgeries? My poor body: I was always quite healthy right up until I was diagnosed with cancer in 2007. I often tell people I’m really quite healthy except for cancer, but that’s another subject. We can ask: what would cancer be without all this collateral damage? It would be a walk in the park, as they say, or a cruise in the Caribbean. It would be too easy, and who would want that?

*I should mention that there are few specimens like me. Eighty percent of those with esophageal cancer have passed away after three years. I am an outlier, and in a huge way.