No, not that word. ‘F’ as in fatigue. I’m so tired of talking about fatigue, not to mention living with it, that I’m going to try to act like the journalist I used to be and write something useful about it.
Forty years ago on this date, I was fifteen, about as old as the girl in the above photo caught sleeping back then at Woodstock on this same weekend. I was too young to get my parents’ permission to go and still too obedient to concoct a story about staying over my girlfriend’s house so I could sneak off to it anyway. I did go to Watkin’s Glen four years later, but I had a car and had lived away from home by then and didn’t have to sneak. Oh, what I wouldn’t give right now for the energy I had then, the ability to exist on little or no sleep for a few days, then crash and sleep late on Sunday and wake up ready to take on the world again.
One year ago on this date, I had a partial mastectomy, which was referred to by its medical euphemism “lumpectomy.” I despise medical euphemisms, and if you’re interested, you can read a bit more about how much I despise them here. Today, one year later, I am suffering, along with thousands of other cancer survivors, from what is, thank goodness, not referred to by a euphemism but referred to by the straight-forward phrase “cancer related fatigue.”
Let me tell you a little bit about what kind of person I am. People who know me — even only in cyberspace, even for only a short period of time, like the time it takes to evaluate one of my new physical therapy patients — would never, ever accuse me of being lethargic, lackluster or apathetic. My mother used to say I was full of P and V, which stands for pep and vigor, or piss and vinegar, depending on how colloquial you want to be. So, you can imagine how frustrating it is for me, when I am used to boogy-ing full tilt through life, to be halted in my tracks by fatigue.
WebMD Offers this explanation of Cancer Related Fatigue:
- Fatigue often is confused with tiredness. Tiredness happens to everyone – it is an expected feeling after certain activities or at the end of the day. Usually, you know why you are tired and a good night’s sleep solves the problem.
- Fatigue is a daily lack of energy, an unusual or excessive whole-body tiredness not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from one month to six months or longer). Fatigue can prevent a person from functioning normally and impacts a person’s quality of life[....]Cancer-related fatigue is one of the most common side effects of cancer and its treatment. It is not predictable by tumor type, treatment or stage of illness. Usually, it comes on suddenly, does not result from activity or exertion, and is not relieved by rest or sleep. It often is described as “paralyzing.” It may continue [long] after treatment is complete.
I actually recall the exact day that my own cancer-related fatigue started. It was the second Tuesday of radiation treatment, in week two of my three-week, once-a-day Vancouver protocol, which would last for a total of sixteen treatments, or “fractions” as they are known. I was on medical leave, because I was only about a month post-surgery by then, and I was not allowed to be lifting patients yet. Plus, I may be feisty, but I’m a realist. I would have been far too distracted to drive from patient to patient all day to do my job properly while still getting treatment, so I had elected to stay out of work until radiation was done. Good thing I did. On that second Tuesday, about halfway through radiation, I left treatment as usual, feeling pretty good, a little tired from getting up early, but nothing that a quick stop at the Dunkin’ Donuts down the street couldn’t fix. By the time I pulled my car into my driveway forty-five minutes later, I felt like lead. I nearly collapsed as I got out of the car, just managed to keep myself from crawling to the door, and flopped into bed, where I fell instantly asleep for the next four or five hours. By the end of that week, I had developed a raging sinus infection and had to see my primary care doctor to be put on a fierce antibiotic. After that week, I was never the same.
In survey results published in 1997 by the Fatigue Coalition out of the University of Chicago,
- “oncologists perceived that 76% of their patients experienced fatigue.” However, these same “oncologists believed that pain adversely affected their patients to a greater degree than fatigue (61% v 37%), [while] patients felt that fatigue adversely affected their daily lives more than pain (61% v 19%). Most oncologists (80%) believed fatigue [was] overlooked or undertreated, and most patients (74%) considered fatigue a symptom to be endured. Fifty percent of patients did not discuss treatment options with their oncologists, and only 27% reported that their oncologists recommended any treatment for fatigue.”
Not a big surprise to me, these study results. My radiation oncologist is the head of his department at a well-known teaching hospital, and yet, when I reported my exhaustion to him on Wednesday of that week, I was brushed off with an “Oh, well, you might need an extra hour of sleep for a while, but you’ll be fine.” By the end of the week, when I complained about my obvious and severe upper respiratory symptoms, I was sent home from this well-known teaching hospital, which is full of doctors, nurses and medication, and told I had to contact my primary care doctor to get treated for it. Does anyone else think there’s something wrong with this?
A study published in the 2/15/2006 issue of Cancer found that “[u]p to one third of women treated for breast cancer report fatigue symptoms up to 10 years after diagnosis….” The authors of the study concluded that, “[o]verall, the present findings highlight the resilience of breast cancer survivors” in putting up with fatigue for so long and living their lives despite its continuance. For me, what this study highlights is that perhaps most of the physicians who treat cancer patients, who prescribe the poisons and perform the procedures that overwhelm our immune systems, who oversee the scorched-earth, slash-and-burn treatment protocols that nearly all cancer patients must endure, are themselves doing a piss-poor job of assessing the effects of these protocols on their patients. They might as well just say out loud, ”Oh, you’re still alive after all that? Great. My work is done. See ya.”
Well, I may be exhausted, but I’m not stupid. And as a health care clinician myself, I am not about to accept this nonsense. As the members of the Fatigue Coalition concluded after their survey, “When used, treatments for fatigue were generally perceived by patients and caregivers to be successful. Our data confirm the high prevalence and adverse impact of cancer-related fatigue, although it is seldom discussed and infrequently treated. For patients and oncologists, improving the quality of life of cancer patients requires a heightened awareness of fatigue, a better understanding of its impact, and improved communication and familiarity with interventions that can reduce its debilitating effects.” Right on, baby. Not for nothing did I grow up in the sixties. Power to the People, I say, and Knowledge is Power.
In May of 2006, Alicia Collado-Hidalgo et al published research findings that uncovered a profound functional alteration in the immune systems of women who suffered from fatigue more than two years after successful completion of breast cancer treatment. They looked at the normal cellular processes that are recruited and initiated by our immune systems to help us fight both the cancer cells directly and the indirect effects of the treatment we endure to blast the cancer out of our bodies, and found that some of those processes may never get shut off after treatment is done. Long afterwards, our bodies may still produce the same inflammatory response they produced when we were first diagnosed, a cellular response which can be detected and measured in blood samples years after our cancer is ‘gone.’ And this continuing inflammatory response was found in those women who suffered from fatigue two years or more after they’d been treated.
So, what the heck do we do about it? What I’m doing, first of all, is arming myself with information. I’ve taken to getting copies of every report for every test and diagnostic image I get, because I’m frankly sick of having reports misread to me or not reported to me at all. I had my regular annual physical with my PCP recently, whose sensible response to our discussion of cancer related fatigue was to order a bunch of lab tests. This yielded some interesting information, namely that both my white and red blood cell counts were just below the low end of normal. Meanwhile, my monocytes, which are the white blood cells that destroy and remove cancer cells from the body, are running above the high end of normal, months after my treatment for cancer has ceased. These monocytes were implicated, along with their associated cytokines, in the above study of immune system changes in women with fatigue. Things that make you go, “hmmm.” In case you’re interested,
- Cytokines are natural cell products or proteins, such as the interferons and interleukins, that are normally released by white blood cells, lymphocytes and macrophages [like monocytes] in response to infection. These cytokines carry messages that regulate other elements of the immune and neuroendocrine systems to control cancer growth. In high amounts, these cytokines can be toxic and lead to persistent fatigue.
from the Cancer Supportive Care Programs site
I have also looked up a number of fatigue assessment tools that have been researched for efficacy, and decided to fill out the Fatigue Symptom Inventory, which you can find in my previous post. I have an appointment with my breast surgeon in two weeks, days after my one-year post-op mammogram, and I am planning to bring a copy of my filled-out FSI. One of my cancer doctors really ought to step up to the plate, in my opinion, act like they earned those letters after their names, and conduct a decent medical evaluation, don’t you think? The Cancer Supportive Care site has this to say on the subject:
- What Physicians Need to Know
Managing fatigue begins with talking to your doctor. Physicians frequently don’t ask about fatigue. Patients often have the misconception that fatigue is just something that they must endure and they don’t ask for a treatment plan to help with the fatigue. Recent awareness about the negative effects of fatigue on quality of life has led to new efforts and programs to help relieve symptoms of fatigue.
Medical Evaluation [Should Include]
1. A careful history to define the extent of fatigue.
2. A physical examination to look for abnormal physical or neurological findings.
3. Blood tests to assess hemoglobin levels and chemistries such as potassium, sodium and magnesium.
4. Check for metabolic abnormalities; measure thyroid and adrenal functions and serum chemistry profiles including albumen, liver and renal functions and calcium.
This article also goes on to suggest lots of reasonable and practical measures to take to mitigate fatigue, such as good nutrition, emotional support, getting rest and moderate exercise, and taking anti-depressants if necessary. These are all suggestions that most of us know as common sense or discover as we communicate with other survivors. But what about when you do all that and still have fatigue? My daily diet reads like a textbook of good nutrition. It’s been so good for the past four or five months, that I’ve managed to lose about ten pounds even though I’m too tired on my days off to get out of bed sometimes. I’ve been taking an excellent supplement for about three weeks which contains the nutrients that our bone marrow needs to produce red and white blood cells (iron, vitamins C and B12, and folic acid), and I have begun to feel marginally better. I work as a physical therapist, so I spend about thirty hours a week running around from patient home to patient home, demonstrating exercises, busting muscle knots with massage, and teaching my patients how to walk better. So, the next doctor who glibly tells me that I wouldn’t be so tired if I got more exercise will possibly get a bust in the chops. I’m already taking an anti-depressant, which is doing a good job. I don’t feel at all depressed, sad, desperate, hopeless or anything like that. I feel frustrated and annoyed and determined to get someone to help me with my fatigue. So, what else can I do?
Well, hopefully, I can get a doctor to check what hasn’t yet been checked in the above list and make sure I don’t have some other medical problem. The National Cancer Institute suggests that, owing to the apparent relationship between fatigue and inflammatory cytokines, taking anti-inflammatories for a time might help. And should all else fail, small dosages of stimulant medications, like caffeine, methylphenidate (Ritalin), modafinil (Provigil), and dextroamphetamine (Dexadrine) have been shown to help people get past fatigue. I have a friend who developed crippling fatigue as a side effect of a medication she needed to take to treat another condition effectively (gee, sound familiar??), and she was successfully treated with Provigil. But she had to insist on having the fatigue treated in the first place, making sure to mention that she was having difficulty getting up to go to work.
So that’s my plan on this anniversary, to insist that I have a right to have my life back. Peace, baby.
Further Information – In addition to the links included in the post, here are some PDF’s you can download:
Alternative Cancer Treatment-Immunity Management
Assessment of fatigue
Cancer Fatigue Awareness
Fatigue Symptom Inventory
And here is a link to one of the most comprehensive write-ups on cancer related fatigue; you can read both the patient version or click on the tab for the health professional version:
National Cancer Institute – Fatigue PDQ
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