Why is Cancer Fatigue so debilitating?

When I was diagnosed with Stage IV Metastatic Breast Cancer (MBC) in 2017, I thought I knew what fatigue was. I’ve powered through many nights of none or little sleep in my life, through graduate school, through starting a business that occupied every waking moment, through two pregnancies, and two children while managing said business.

Boy was I wrong.

My first treatment, when we though I was Stage II for a brief time, was IV chemo. Adriamycin and cytoxin were pretty rough on me physically — there’s a reason the former is nicknamed the “red devil.” For the very first time in my life, I couldn’t just power through and I’d litigated through walking pneumonia, which is not smart, by the way. Anyway, during chemo, I couldn’t get out of bed, I had debilitating headaches, I was miserable. Things got better between treatments (every other week) and then I was thrust back into days of laying in bed, especially when we discovered I’d actually been Stage IV from the beginning and I needed surgeries immediately.

That was my first experience with cancer fatigue and it was eye-opening in so many ways.

The targeted therapy that I’ve been on since I finished chemo (Ibrance, Piqray, and Kisquali) also cause fatigue. I’m sure there’s an excellent scientific explanation as to why that occurs in nearly everyone. In my more fanciful moments, I imagine that my whole body is pretty tired of dealing with the normal germs and invaders, then cancer, and then all the poison I take to keep the cancer at bay. It’s a lot of work for the organs responsible for clearing out toxins and processing the food at the same time.

But there’s another type of fatigue that I never really understood before cancer.

Before cancer, I was a divorce attorney. I had to deal with emotional clients and handle my own emotions about handling the opposing attorneys, staff, the minutiae of running a business, and all the other home stuff. I did that through two pregnancies and then pumping and nursing for four (4) years straight in the middle of that. My various roles required me to be juggling a lot of balls and a lot of those balls were in some way dealing with emotions; and anyone who knows me knows that emotions are not my forte.

And yet.

I had no idea how much of cancer fatigue is related to the emotions of handling cancer, the treatments, the affect of carrying a terminal diagnosis with one, everywhere, all the time. There is no break, no vacation, no real way to lay it down and not have death staring me in the face. This amount of emotional weight was entirely new and I had no frame of reference to handle it, none.

I got help. I saw a psychiatrist, I accepted a prescription for anti-depressants and I worked through several different prescriptions until we got the right one. I did evaluations and I met with a psychologist to talk about other coping mechanisms — she actually told me that she had nothing to offer me.

And so I did my best, which sucked, and I periodically had explosions on hapless scheduling people, the people who answered the phone at my insurance company, billing people who didn’t do something right, collection agencies who were doing illegal things (actually I’m pretty sure they yelled first), and random other people who crossed my path. These explosions sated my need to get the build up of emotions out and I felt better for a time, but then the anger would creep back in.

I read once that the act of crying is literally the overflow of emotions that cannot be contained. That once an emotion is too much, it literally leaks out of the body. For me, when I cry, it’s usually a lot more like a tsunami, so I’m not really sure what that person was thinking. Another analogy I’ve heard is that children are so in the moment and they feel their feelings so strongly, that the crying that doesn’t stop or the tantrums where they literally throw themselves on the floor is actually the best way to deal with emotions. Once they get it out, they are done and they usually sleep. I’m pretty sure there’s a lesson there that doesn’t require one to actually throw oneself on the floor since I’d probably not be able to get back up again.

In all seriousness, I do know that the lesson for me is — don’t stuff emotion. Don’t let it build up. Don’t allow things to get so bad that explosions occur. Ask for help before things look so hopeless that nothing is good, ever. Exercise helps too and I’ve found that yoga helps a lot.

And, this …

I was always used to just handling whatever came my way that I forget sometimes that some circumstances just aren’t good for me. Sometimes some of that fatigue that I’m carrying around is a signal that I’m too stressed, handling too much controversy, and I need to do something else. There’s usually not much peace to be found in practicing law; at the same time, I’ve found that doing the consulting and guiding and strategy creation that is part and parcel of what I am able to do through my non-profit is much more peaceful.

Now, don’t get me wrong, there’s still enough controversy to satisfy anyone who likes to win (yes, I’m talking about myself, don’t judge); at the same time, it’s controversy that I can put down, walk away from, get myself centered, and then come back to it. Problem solving doesn’t have to be a fight, doesn’t have to be a war, and having a difference of opinion or a discussion about opposite viewpoints doesn’t need to be ugly or nasty.

I’ve never been very good at meditation, I think my mind is just too cluttered with ideas and brainstorms and people who I love, to slow down. I’ve learned that just quieting my mind for moments, for short periods of time is more doable and more comfortable for me. I’ve found that the disciplines I’ve learned a little about in my yoga practice have been invaluable in many other facets of my life. I’m a novice still and I know that I have much more to learn; at the same time, for the first time in my life, I have that space to learn.

Now, don’t get me wrong, I still get fatigued a lot. I get worn down in a variety of ways. The difference now about my life is that if I need to take a day off, I do that. If I need to wallow in a bad place for a day or so, I do that. If I need to take a step back from a project or a person or a group or helping someone or doing something, I listen to my body and I do that.

Most of the time.

Sometimes I still need a reminder and my husband does that for me. I don’t always listen very well; at the same time, I’m getting better at listening. I have mentioned a few times that I’m pretty stubborn, right?

Yes, I’m fatigued. Yes, I have a lot to carry. Yes, I’m still terminal.

I’m just doing a slightly better job of accepting what is while looking towards what can be and only taking on the things that I’m actually responsible for while leaving the rest. Slightly.