Fatigue is an often-mentioned side effect from cancer and its various treatments. It is not the type of fatigue where a good night’s sleep will “cure” us. It just seems to go on and on.
A standard dictionary definition of fatigue, according to Medicine, is, “extreme tiredness resulting from mental or physical exertion or illness.” Fatigue can also be acute and come on suddenly or be chronic and persistent. This describes what many of us experience.
There are several names for fatigue in cancer patients, which include cancer fatigue, cancer-related fatigue and cancer treatment-related fatigue. Whatever it is called, I think most cancer survivors will agree that it sucks!
Cancer fatigue has made a huge change in my life. I researched various articles from the National Cancer Institute, Mayo Clinic and Cancer Network: Oncology Nursing to find out more information. As I suspected, this insidious and lingering side effect is under-reported, under-diagnosed and under-treated. The percentage of persons suffering from fatigue in breast cancer survivors may be as high as 30 percent and last as long as five years after treatment, according to the journal Oncology.
The question I have is why, and now the research is explaining some reasons. The changes to your body by the cancer can lead to fatigue. Certain cancers can weaken muscles, damage organs and alter hormones. Some cancers release proteins called cytokines which causes fatigue. All cancer treatments, including chemo, radiation, surgery, bone marrow transplants and biological destroy healthy and damaged tissue, according to the Mayo Clinic.
Obviously, there are other side effects from treatments such as nausea, vomiting and diarrhea that can also cause tiredness. Think what an episode of the flu or an intestinal bug does to our body, then imagine what survivors go through periodically. Some cancers can even cause anemia, which is bound to make the body weak.
In addition to all of the above causes, pain, lack of sleep, infections, hormonal changes and other factors increase the fatigue even more. Immunotherapy can leave flu-type symptoms, while surgery is always an assault to the body. It also makes sense that the buildup of toxic substances left in the body after treatment contributes to feeling weak. Being less active is a huge factor.
One of the most important elements of fatigue in cancer is nutrition. In cancer survivors, the body may not be able to absorb the nutrients from the food as a result of cancer, treatment or both. The patient may not feel like eating because of nausea and diarrhea. The body needs more energy because of infections and fever, which many survivors suffer.
One way to battle fatigue is to have your doctor refer you to a nutritionist. I am fortunate enough to be at a YMCA which has a LIVESTRONG program, and have received tremendous advice from two nutritionists. One of the first foods recommended to me was Kefir for my intense diarrhea. The nutritionist relates a story about a colon cancer survivor who had gone through more than a dozen medications from his doctors to control the diarrhea and nothing worked. He decided to eat the Kefir, which immediately helped him. It is available in the yogurt department of most grocery stores. I have learned to make smoothies, to try different brands of foods and to read labels from these classes.
The other major solution to fatigue is hyper kinetics or exercise! Regular and moderate exercise improves one’s capacity to move, increases muscle strength and decreases fatigue. LIVESTRONGhelps with special exercises for persons recovering from cancer treatments. What survivors need to realize is we do not need to run a marathon. Even an exercise like simple chair yoga helps with fatigue.
Finally, the cancer survivor needs to learn how to pace oneself and not over exert. A number of articles have addressed this, but what I find most interesting is one from the National Cancer Institute. Research has discovered that during and after cancer treatment, patients cannot stay focused over long periods of time and have a hard time remembering. There is even a name for it – attention fatigue!
The answer to helping with this type of fatigue is to take part in restful activities, and spend time outdoors. Now I know that all that time I spend watching television and reading are good for me!
In summary, fatigue is a problem that doesn’t go away. However, we can try to make it better. Talk to your oncology nurse, navigator, doctor and people on your medical team and do not just believe that fatigue is inevitable. All of us need to have some control, and the more control we have over our bodies, the better we feel!
It is interesting to observe the lessons one can learn from a supposedly recreational television program. I was watching a new series this year called “New Amsterdam.” Surprisingly, the show features a medical director of the hospital who has cancer. He was talking to a Rabbi with cancer faced with what seemed like an impossible decision. The Rabbi could either go home and live a year with his family doing chemo and radiation; or have a surgery which he had only a 10% chance of surviving due to a bad heart, but he would be cured. He chose the surgery.
When the doctor asked him why he made the decision he did, the Rabbi’s answer hit me like a ton of bricks. He replied, “I can either wake up dead or cured, but will no longer be a patient.”
Later in the show, the doctor decided to have a clinical trial targeting his cancer rather than chemo and radiation in spite of the lesser chance of surviving with the trial. His oncologist was dismayed, but he told her emphatically, “I don’t want to be a patient – I want to be myself.”
Cure’s motto now is one I can relate to. “I am more than a patient.” It occurred to me after this program that what is bothering me about my incurable blood cancer is that I will be a patient until I draw my last breath. Other cancer survivors (but not all) come and go from the Cancer Center, but I am there forever. Honestly, the only thing that keeps me going is the staff and oncologist is so wonderful to me and has become my friends. In other words – they “get it!”
Of course, I am a patient at my family doctor’s office, but if I’m not sick I go in twice a year for regular wellness checkups. This is totally different. All of us with chronic diseases face the fact we do not have a choice and will be a patient forever. Cure really hit the nail on the head with that motto. I am constantly on chemo, have bone marrow biopsies twice a year, and visit the Cancer Center monthly,
However, I am more than a patient. I am very vocal about what I think at the Patient Advisory Council meetings. I love to talk to my doctor about my writing, my travels and my family. I am sure she realizes the psychological benefit of talking to her patients about their lives and that is why she is so good at what she does. I write articles explaining I do many other things with my life, instead of just being a patient.
No matter what treatments I am receiving, no matter whether I am cured for good, I am not “just” another patient. I may have to fight a little harder for the status of being my own person. However, it behooves all of us to remember that “I am more than a patient – I am ME!!! “
A favorite mystery author for many readers is Louise Penny and her featured detective, Armand Gamache. I have several friends and relatives who kept recommending these books. I decided to read the first one in the series when I visited Montreal, where the fictional characters live. It is titled Still Life, and I am hooked!
As a writer, one of the aspects that fascinate me is how the title of any book is chosen. In a special scene, Detective Gamache is talking to a psychologist recently retired after 25 years as a therapist. She explains that she often felt many people actually enjoy their problems and use them as an excuse for not growing up and moving on. She coined the phrase “still life” to describe how they are always waiting for someone to save them.
She continues on to say that these people don’t look to themselves for solutions, but to others so they prohibit any change. Gamache theorizes that change is inevitable for all of us and we should not be afraid.
What a profound philosophy of life coming from a mystery title! The more I pondered over this book, the more I realized how “still life” can apply to cancer survivors like me.
Cancer patients are hit seemingly out of nowhere with a diagnosis that is scary. The mere word “cancer” is terrifying, though many kinds of cancer are treatable. Shaken out of our comfort zone, we no longer have a still life. Sure, we can blame others for many life crises such as the way our parents raised us, the terrible boss who causes so many problems, or the abusive partner who makes our live miserable.
But cancer is a different animal. We may try to blame genetics; the environment; undue stress or an unknown spirit in the universe, and initially, many of us may do that. We can also turn to blaming our doctors for not finding the cancer sooner or doing the wrong treatments. The chemo makes us so sick we blame the pharmaceutical companies for the side effects. On and on it goes.
But - ultimately the solution is in us. Sometimes we look at our own lifestyle and chide ourselves for drinking too much, smoking too much, eating the wrong foods or lack of exercise.
I will be forever grateful to my oncologist for telling me there was nothing I did to cause this cancer. We all know that some people can abuse their body and be perfectly healthy, while others do everything right and still get sick. It often boils down to one single cell that mutated. However, I certainly improved my lifestyle realizing it could help me to live longer and better!
We cancer survivors are a hearty bunch. Once we get past the initial shock, we look inside ourselves for the solution to cope with the changes in our lives. We reach out to others, join support groups, encourage people personally and on Facebook. I adore the many wonderful people I have met on my journey. I belong to a Patient Advisory Council at my hospital, and have met the bravest people I know. I also love the people in the Livestrong program at the YMCA and feel privileged to have them in my life. One thing we all have in common is we can’t live still lives. We are forced to change, examine ourselves and our lifestyles, and develop our own solutions. Cancer is a terrible illness to have, but it can teach us to move on and that is an invaluable lesson.
“Ring the bells that still may ring,
Forget your perfect offering,
There’s a crack in everything,
That’s how the light gets in”
I would not expect a crime mystery to have a verse like this which was written by Leonard Cohen. However, it is highlighted in the famous book, A Fatal Grace, by Louise Penny.
In her books, Penny admits that while her novels appear to be traditional crime stories, she wants them to be more than that. She expects them to teach about life, death, peace, choices and fight for freedom among a few lessons.
In this particular novel, the famous detective, Armand Gamache, is admiring the paintings of a good friend. The artist points out that in every piece she paints, there is a tiny crack showcasing imperfection and impermanence. She makes sure that this crack is present in every single painting.
Gamache, being a detective, noticed this feature immediately and observed that the crack lets the light in and radiates in all of her work.
Every one of us has a persona we present to the public. We want others to think of us as being kind and good, strong and not vulnerable, organized and energetic. Just witness the posts on any social media and you will see this. However, each of us knows where our faults are. It took years for me to admit my depression and very few people know I was once involved in intense counseling, fighting for my black mood to lift.
We all have our cracks and cancer provides a huge one. Perhaps for the first time ever, we present (and look) weak, vulnerable, sick and needing to ask others for help. One of the first articles I ever wrote for Cure was titled “It’s OK to be vulnerable.” When I admitted this vulnerability on Facebook, I was overwhelmed not only with the support I received, but people thanking me for “being real.” I have tried to be real ever since.
This important and innocent appearing novel teaches us everyone has a crack in our lives, but something even more important happens. We begin to see the light beyond the crack. I compare it to many days of rain which happens periodically in Northeast Ohio, where I live. I tend to miss the sun, yet I know it is back of the rain. When the sun finally appears, I embrace it. I do not enjoy flying like I used to, because it has become such a hassle. However, I am still thrilled as a plane climbs above the stormy clouds to the sun and I watch the rain below. This is a feature of nature that will always keep me in awe.
When my most serious “crack” of cancer appeared, I certainly did not see the light. Eventually, as the crack began to widen, shining rays began to appear. I made new friends, I found goodness in a lot of people, and I received support as I tried to help others. My writing exploded due to my wonderful oncologist’s encouragement. Most of all, I learned to let the little things we call “small stuff” go and appreciate life. The wisdom of getting older teaches many of us to let minor hindrances not bother us as much. However, cancer forced me to learn more quickly.
The artist deliberately placed cracks in her artwork. Gamache observed how this lets in the light. Sometimes the crack even radiates. None of us would ever want to put a chronic disease into our lives, and did not choose it. However, a terrible disease like cancer can open up a whole new world of light and radiance as we learn to embrace both it and each other!
My father used to have much wonderful expression, and used them liberally at just the right time. The minister even mentioned them at his Memorial Service. Some of them I wouldn’t dare publish, but others are funny and I find myself repeating them.
One of his favorites if someone was complaining about life in general or not feeling well was, “Well it is better than the alternative!” That comment usually shut people up from feeling sorry for them, including me. The longer we can fend off death, the better we are.
I know many people who are insulted and afraid to “get old.” I was frankly upset myself when one of my college students called me an elderly woman. She could not possibly be talking about me could she? I was sputtering and stammering about this, when my siblings and cousins quickly informed me that indeed I am elderly. I became even more defensive until I remembered that they are all older than me!
However, I never had a “thing” about age. I agree wholeheartedly with my cousin, who states she is proud of every year. I have never lied about it or spent money on expensive creams to make me look younger. I was actually pretty graceful about it compared to some people I know.
But cancer changed me. I now resent people complaining about getting old. I have just reached the benchmark of how long I was predicted to live when I was first diagnosed. I love my life and wish to live as long as I can be reasonably healthy.
Please don’t say to anyone with cancer how you hate it when you are reminded about getting old. Now, when people complain I tell them I only hope to get older. When I visit doctors for checkups or am around young people I admit I am old. But it isn’t an insult or anything to conceal. Rather it is a great privilege.
Those of us who are cancer survivors know this. Every day, every hour, every minute, every second counts. We are filled with gratitude for one more year. It is a privilege many people do not have, and we try to make the most of it!
I was receiving a stern and deserved lecture from my eye doctor. “It’s been too long since you have been here.”
“Oh two years,” I replied. Since I waited five years before that appointment, I was actually proud of myself.
“No- it has been three and a half years,” he corrected me. Time does fly when you are having fun and I must have been having a lot of it! I deserved this lecture and knew it. I have a family history of glaucoma and the beginning of cataracts. I have some vision insurance and live down the street from the office, so that is not an excuse either. The main reason I went in today was because I had read that chemo causes cataracts. Since I had been on various chemos for eight years, I wanted to check it out.
I don’t know about other cancer survivors, but I do find it hard to balance all my medical appointments. I never miss chemo and faithfully go for my bone marrow biopsy every six months. I immediately let my doctor know if I have an infection, so I can be put on an antibiotic. I faithfully see my family practitioner and dentist twice a year. I have my hearing checked often because the chemo has affected that too. I also have to go in regularly to have my hearing aids taken care of. The main reason for this is because without them I just cannot hear!
But when it comes to routine eye checkups and other appointments not directly related to my cancer, I become lax. I think because so many of my appointments focus on my blood cancer, I just find it difficult to find time for the other things. I try not to worry constantly about my health, and every time I am in any doctor’s office that ugly beast reminding me that I have a chronic disease rears its head. It is not logical for me to wait so long between appointments, since I am deafened already and need my vision more than ever. It is an emotional reaction from me.
I do think about cancer and all its side effects. I try not to over focus, and think that every single twinge or part of my body is caused by the cancer. I hate picking up the phone and making more appointments. I find sitting in waiting rooms is annoying, so I don’t always do what I should.
I did meekly tell the eye doctor I had been going in for chemo 5 days a month for awhile, but even that was lame since I stopped over a year ago. I should have been to him sooner – period.
When I was working, I was usually given positive evaluations for being organized. So I do not even have this excuse. Although some people would think my apartment is not organized, I do know where everything is most of the time!
I am not making excuses. I am just tired of medical appointments and let it go. I deserved the lecture I know. I need to be more balanced in my health choices. But – I still will not make an excuse about trying not to be over focused or hyper vigilant about my medical needs. I need to take a break sometimes, and go watch some television or go out with my friends and family. That is a balance too!
By Jane Biehl PhD
Several of us bloggers have written about how cancer has impacted us. We fight to tell people “I am more than my cancer.” The slogan for Cure Today, which I love, is “I am more than a patient.”
I certainly agree and there are many other aspects of my life. I am a sister, aunt, friend, church member, sports fan, writer, reader, animal lover, speaker, and on and on.
However, I must admit that since my diagnosis, the cancer has permeated into every area of my life, both in a positive and negative way.
I can no longer take long walks because of aching muscles. I can’t attend sports events which involve too many stairs. I am unable to ride in the car for long periods of time. Because of the chemo and cancer, I am constantly fatigued. I am profoundly deaf from the chemo I was on. None of this will ever change. That is just some of the negatives.
However, I have changed in positive ways too. I used to be extremely driven and work oriented. Now I drop work to spend more time with my friends and family. I no longer worry about every little thing. When one is given a time limit to live, this “small stuff” doesn’t seem important anymore. I am full of gratitude and thankful for each and every day I am alive. I cherish the time left with my 14 year old service dog. I love it when my cat curls up in my lap and purrs, because he is getting older too.
I recently celebrated a birthday and am proud of being elderly! I try not to worry as much about money matters, and what will happen in the future. I realize that every single moment I worry wastes any time I have left on this earth.
I could say a lot more, but you get the point. Cancer has done positive things for me too.
Cancer is not who I am, but much more. I am more than my cancer. I am more than a patient. I have been able to combine cancer with who I have become. I know all of us cancer survivors have done this and that is a wonderful achievement!
I recently returned from a scenic and wonderful cruise to the eastern seaboard of Canada along the St. Lawrence Seaway. I visited several communities. In Canada, they do not call these population centers villages, cities or towns, but communities. Every sign on the road as you drive along says welcome to our community of …and the name of the town.
The tour guides on our excursion trips were outstanding and relished telling us about how the hardy Canadians survive the brutal winters in their country.
I usually think of winter as a nuisance living in Northeast Ohio. I do feel better physically during the cold months than the hot ones, especially when I am on chemo and the heat really bothers me. But, after several months of ice, snow, bundling up, pulling on boots and driving in inclement weather along with the gray and gloomy skies I get sick of the weather. I also tend to become depressed after a few weeks. I love light, long days and being outside. Ohio generally has a hard winter just for a few months from December to March.
In Canada, the winters typically begin early in October and last until May. The natives stated matter of factly that they average ten feet of snow – yes ten feet not ten inches! A “hard” winter might produce up to eighteen feet of snow. I pictured the cold, freezing, blowing, drifting, bone chilling snow biting my hands and face and just shook my head. How do they survive?
Some people do escape to warmer climates in Florida, Cuba, Central and South America. But the people who stay insist the ones who leave miss all the fun! Instead of fighting and dreading the winter, they embrace it. Most winter climates have connoisseurs of snow sports like skiing, ice skating and tobogganing. But in Canada, these hardy souls tunnel through the snow and go to their community halls. Different churches and/or community centers are located in every town. The townspeople gather to play games, sing, socialize, eat, and get to know their neighbors.
During the summer months (I was there in September) the Canadians are extremely busy planting flowers, plowing the fields, growing crops and collecting lobsters and mussels. Their flowers are absolutely stunning, and it is obvious they spend hours in their gardens. Very little time is available for socialization. But during the winter months they play and have a wonderful time with their neighbors.
There have been studies done in some of these areas on why the crime rates are so low and the fact young people do not leave after college like other cold climates. One answer is given – these children have a sense of community.
What does all this have to do with cancer? I soberly went over my eight year cancer journey. When I was first diagnosed, I was upset, furious, scared and confused. I was positive I was going to die soon. I resented the side effects that laid me flat for days from the chemo. I hated being part of this exclusive club of cancer survivors I never chose to be a part of. I worried every single day when I woke up if this was going to be my last one. I was convinced no one understood what I was going through because my cancer is so rare.
Gradually, I began to adjust. I continued to live one more day until I no longer dwell on how long I have. I found other cancer survivors who, regardless of the kind of cancer, understood my journey. I know each one of us is different and makes his or her journey alone. But we all share the same fears, emotions, side effects from the chemo, and facing an unknown future.
I began to embrace my cancer family along with the doctors and nurses and staff at the cancer center. I started to write and share my journey with other writers and readers. I learned to cherish every day.
Cancer survivors learn to tunnel through the snow. We have a community to help us become stronger mentally and support us through the tough times.
When the winter breaks, when we find we are in remission, when there is no evidence of cancer, we see the spring and absence of snow, the flowers growing and the beauty of long summer days. But, we have also experienced the sense of family and community of winter. Although none of us chose this path, we are fortunate in many ways to have both seasons. What a lesson the Canadians have taught us!
I was so proud that several months later one of my cure articles was used for hashtag World Mental Health Day on Cure Today’s Facebook page. Here it is!