Willpower versus Fatigue: Not a Fair Fight

It’s that time of year again. Somewhere about now, eight years ago, I was told I had breast cancer. The good news is that I don’t remember the exact day, and I’m glad like that I have forgotten that particular detail. I do know it was in July, but I refuse to look it up. I’m still here, and that’s what matters, so screw the damned date.

I do remember that the whole rollercoaster ride started with my annual physical, which was mostly uneventful. My only new complaints that year were that I had been feeling mysteriously and increasingly more tired during the previous months, to the point where I was starting to cut back on my considerable non-work activities, and I had developed tinnitus. Otherwise, I was peachy. I left the visit, armed with a lab slip for blood tests, a referral for a consult with an ear doctor, and a slip for my annual screening mammogram. My blood tests were all normal, my hearing was normal, and I learned how to ignore the tinnitus. The mammogram, of course, was another story.

Around the time of last year’s physical, in yet another attempt to reduce my ongoing fatigue, I stopped consuming pretty much all processed sugar and desserts. So, no daily cookies or ice cream or muffins or cake, etc. to get me through my work day when my energy flagged. Still ate a little dark chocolate, a lot of fruit, and once in a great while, a real dessert. As I’d hoped, it did smooth out the hills and valleys of my energy level on my work days. What I did not expect, but which was confirmed at this year’s annual physical, was that it also caused me to lose twelve pounds. I’ve been able to fit into all my old clothes again. It’s been like going on a massive shopping spree without spending money. Christmas in July!

It also had an apparently significant effect on my vital signs. My blood pressure has been surprisingly good for several years now, but at this year’s physical, it was spectacular, as was my heart rate. If you didn’t know better, you’d think I was a bleeping marathon runner, which I am decidedly not. I was also not any shorter, which means my post-menopausal spine is not collapsing with osteoporosis. And there were no palpable lumps in my breasts. I have to wait before I can get my next now-annual-again mammogram, because my insurance won’t pay for it unless it’s a year and a day since my last one. Stupid, but there it is. So, that’s not until September.

Aside from waiting for the mammogram, basically everything is just dandy. Except that I still struggle with fatigue. I don’t know how it is possible to be so apparently healthy and still be plagued by fatigue, but I am. My doctor orders extensive blood tests every year, and every year, they come back normal, with nothing in them to account for the big F. I expect that this year’s labs will be the same. As Churchill once said, about a very different subject, “it is a riddle wrapped in a mystery inside an enigma.”

If I thought I’d been suspiciously tired before being diagnosed, it was nothing compared to what happened after I began treatment. I remember the day that the serious, body-slamming, unrelieved fatigue started. It was right after my seventh radiation treatment, when I drove home, got out of my car, and almost collapsed in the driveway. After that, it took up permanent residence. Despite that vivid memory, sometimes I can’t remember if it’s worse or better than it used to be. The day before this year’s physical, I filled out a Fatigue Symptom Inventory, a tool to help rate and track cancer related fatigue (and other kinds), as I’ve done one or more times a year to see how I’m doing. You score most items on a zero to ten basis. If your average score for each item, except for items 12 and 14, is a 4 or more, then fatigue is having a significant impact on your life. This year’s average for those items was 5.75, better than the early years, but no better than most of them. So, I’m not daft at least, and knowing my stubborn propensity to underplay things, I probably scored a lot of the inventory items on the low-ish side.

Sometimes I wonder if I’m lacking in willpower. Acccording to the American Psychological Association, “willpower is the ability to resist short-term temptations in order to meet long-term goals.” Okay. I stopped eating sugar and lost twelve pounds. I just completed a 30-day plank challenge and got up to holding a high plank for two minutes. I’ve put 10% of my income into a retirement account for years now. I’m really good at avoiding the news or scrolling past upsetting posts on Facebook. How much willpower am I supposed to have? Seems to me I’m using up more than my quota just overcoming fatigue so I can function at all. The APA also says that willpower is “A limited resource capable of being depleted.” Great.

I’ve tried every trick I can think of over the years to ward off the fatigue beast. I took drugs for a number of years, which didn’t fix it, but did help me stay upright so I could eventually try other tricks. One of the first drugs I took was Wellbutrin, or bupropion, which is a stimulating antidepressant. It was recommended by the doctor in charge of the cancer related fatigue [CRF] study I participated in several years ago as one of a handful of medication options. Cancer.gov, in its fatigue section, cites a small study whose preliminary results suggest that “the sustained-release (SR) form of bupropion has potential as an effective therapeutic agent for treating CRF with or without comorbid depressive symptoms.” I’m not depressed these days, and I haven’t used any of my fatigue-fighting drugs for a few years. But my doctor and I decided the other day that it might be helpful to try wellbutrin again. It helped me before, when I was in much worse shape than I am now. So, we’ll see. I’ll let you know.

The whole thing is so bloody tedious. I’ve had a very hard time accepting the long-term collateral damage of breast cancer treatment, of which fatigue is only a part, albeit the part that has had the largest effect on my life. I’ve berated myself more times than I care to think for failing to accept how much my life has changed. But you know what? The hell with all that. The hell with acceptance. I don’t like battle metaphors and I don’t like being referred to as a ‘cancer warrior’ for all sorts of reasons. But I’ll be damned if I’m going to stop fighting fatigue, and instead keep fighting with myself about accepting it. Screw that. I think I have demonstrated beyond a doubt that I have plenty of goddamned willpower. That’s not the point, evidently. The point is that it’s an unfair fight. But I’m at least as stubborn as the fatigue is, and I’m going to keep kicking its miserable ass, even when it knocks me on mine. So there. Insert your favorite expletives.

Cancer.gov PDQ on Cancer Related Fatigue

This entry was written by Kathi, posted on Wednesday, July 20, 2016 at 02:07 pm, filed under Fatigue and tagged . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

7 Responses to “Willpower versus Fatigue: Not a Fair Fight”

  1. Hi Kathy,
    I’m over five years out and while the fatigue is not as devastating as it was in the first 2-3 years after the radiation began, I have never returned to my previous level of energy. Working full time as a medical provider leaves me exhausted and really unable to do anything but the basics around the house. My friends know mine will be a rare and brief appearance at any event, and I need hours of sleep that can never refresh me. I used to wake at 5:30 every day work or not and be ready to get things done around the house, play with my dogs, meet new people and go on day trips, the thought makes me want to lie down.
    I’ve been on Wellbutrin XL 300mg daily the entire time but I am reluctant to try stimulants. One huge cup of coffee is a daily necessity, we had a power failure yesterday and it took a while for me to find a Starbucks, I was appalled to feel the lethargy in my body until I had consumed my 6 shots.
    All this to say that I don’t think you are alone. I have said this before but it bears repeating, those whom we see frantically running and exercising and claiming boundless energy, I believe are driven by a sense of fear and denial greater than their fatigue. And I don’t say this out of bitterness or malice, but when I meet these people I am struck by their lack of acceptance of their diagnoses in a real sense. They feel they have beaten cancer, they have triumphed etc and yet we know that many of them will have recurrence and actually simply have no evidence of disease currently. Many will live long lives and die from something other than breast cancer but some of the “survivors” will not.
    My position has always been that when I die of another cause, it can be written on my tombstone, she survived breast cancer, until then, all bets are off, I’m just waiting for the strong possibility it may recur, I don’t want it to but it can.
    So I believe that this overwhelming fatigue is very normal and the medical profession covers it up because they don’t know what to do about it, and if the word gets out will any one take treatment, and secondly can society really afford for all of us to be on disability? I know my long term disability carrier would not countenance the idea. And that is probably the real reason for the secrecy, it would be too big a financial burden for society to carry if we admitted that after treatment most women with breast cancer have been significantly diminished in their stamina and ability to work full time or at all.

  2. Thank you so much, Anne, for sharing your comments. I’m a clinician myself — a physical therapist working in homecare — and I’ve never been able to get back to full-time work. I’ve managed to get back to working four days a week, but I still need that 3rd day off, in the middle of the work week, in order to cope. I agree with you that there are a lot of us out there still struggling — indeed, I KNOW there are a lot of us still struggling with fatigue years later, probably forever, because I hear from them. Every now and then, I email the doctors who conducted that Phase I clinical study that I participated in (which was successful, by the way) to see where they’re at. But you know how it goes. It takes years to get to Phase II and then Phase III to test a new treatment and then get approval to market it. I was a ball of fire before all this, like you. Now, it’s a constant struggle. I hope the wellbutrin helps me again this time, even a little. I’ll take any relief I can get. Good luck to you. Kathi

  3. Kathi, I’m sorry you are dealing with this damned fatigue. My energy level has never been the same since cancer treatment; I used to be so high energy, and I miss those days. I agree with you that acceptance is not the only way. You don’t have to accept fatigue; keep fighting against it. And you have so much willpower. You are a strong woman, my friend.

  4. I am almost constantly wrangling with it, Beth, but I think the Wellbutrin is helping take the edge off.

  5. Kathi, I think fatigue is our new “f” word. By comparison, fuck is nothing.

  6. Totally, Eileen. One of the first posts I wrote about it was called ‘The “F” Word.’

  7. Oh, AMEN to that, Eileen! Hugs.

Leave a Reply