The Many Shades of Cancer Fatigue

Times editor Dana Jennings writes each week about coping with an advanced form of prostate cancer.

I’m tired.

I found out 10 months ago that I had prostate cancer. Since then, I’ve had surgery, started hormone therapy and finished 33 sessions of radiation. And, man, it wears you out.

Dana JenningsDana Jennings. (Lonnie Schlein/The New York Times)

But the weariness caused by prostate cancer isn’t a constant. It fluctuates from week to week, day to day, even hour to hour. In this nano-age of super-instant gratification, we have lost sense of organic time. Prostate cancer, though, has planted me more firmly in each moment. One of the things that I’ve learned, as I try to pay attention, is that cancer’s paint box includes many shades of fatigue.

It starts with the diagnosis. Knowing that you have cancer exhausts you, stuns you into listlessness. Even so, there’s work to be done. There are doctors to be interrogated, a host of tests and scans to be had, treatment decisions to wrestle with and insurers to kick in the shins. With all that going on, it’s hard to get a good night’s sleep.

Next there’s the physical fatigue of treatment. I spent three nights in the hospital after my surgery, and that was the time I experienced fatigue that’s beyond fatigue, a fatigue so palpable it seems you could touch it. I wanted to shrivel into the fetal curl of a woolly-bear caterpillar, spin a cocoon of sleep and tell my doctors to wake me when it was time to leave. I learned that sleep is bliss, that sleep heals, that sleep is the essential post-op drug.

At home, I had to accept that my fatigue was in charge. Mornings were especially slow as I creaked and winced out of bed. I felt like an old car that needed to have its crankcase oil heated before it would start.

I soon learned that just shuffling around the block can be draining, that there’s power in the spontaneous nap, and that you need to set strict visiting hours. Your fatigue – your body – needs what it needs.

But just because you’re spent, it doesn’t mean you can sleep at night. I became buddies with the sleep that isn’t sleep, staked to my bed by pain and anxiety. No matter where I tucked the pillows, I couldn’t get comfortable. No matter how good the music murmuring from the CD player, I couldn’t be soothed. (Is that a blood clot floating in my catheter tube?)

A prescription sleeping pill helped solve those problems. For the sake of my wife’s repose (and sanity), we decided to sleep in separate beds for two weeks, until I felt better and the catheter was out.

I also dozed off where I least expected to. During radiation, I sometimes napped inside the TomoTherapy machine, lulled in my lassitude by Pink Floyd and Metallica. It was the radiation, which lasted more than seven weeks, that resulted in the most profound fatigue.

Toward the end, I was totally washed out. I felt worn down, like a pencil nub that couldn’t possibly be sharpened one more time. It was hard to focus – on reading, on work – I wasn’t listening as well, my legs were heavy. It took just one stout with supper to knock me out for the night.

Even now, a month after my last radiation session, the fatigue still swells late in the afternoon and breaks over me. When 5 o’clock rolls around I’m more zombie than employee. I’m in bed by 10 most nights. And weekend naps are nonnegotiable.

There’s one more subtle shade of fatigue: the fatigue of talking about your cancer. From the diagnosis, through treatment and after, the well-meaning questions seem to never stop. How are you feeling? What’s your Gleason? Where’s your P.S.A.? Will you need chemo?

It sometimes feels as if you have become your cancer or, at the very least, its spokesman. And it can be wearing. But I found that it’s crucial to shake off that languor and learn to speak. Sleep heals, but talking heals, too.

Like Scheherazade and her 1,001 nights of stories, I think we tell our tales so that we, and others, can stay alive — no matter how tired we might get.

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Thanks yet again Dana. Next week, I go for my 90-day post-prostatectomy follow-up and PSA check. Your articles help me prepare in the event I will need to go to radiation treatments. Yes, you are correct – we must continue to talk about it and inform people. Rooting for you…. DIarmuid

Dana:

For all the exhaustion, maybe your energy is used better than it once was….not that I know, but just speculating. Because these articles are masterpieces of economy. They say so much, in a relatively few words, and they mean even more to people WITH and WITHOUT prostate cancer or some other cancer.

My hopes are:

1. You and yours come out OK…with health, happiness, lots of time left together;
2. Those of us who do not have cancer, or any other serious disease, feel more for those who do; and
3. More of those with cancer and other serious diseases, find your essays, and get comfort from them.

All I can say, is “take good care.” And thanks so much.

The days leading up to my scans instill an electric sleepiness at my core while the rest of me is a walking zombie. Only xanax lulls me to sleep. I wake up peeling surreal dreams from my mind – last night a horse was living in my closet and I had to eat a 60 lb. can of pickled beets.

I’m not taking treatment right now. I can only attribute my fatigue to the stress of mentally negotiating the tumors lodged in my neck, which I hope are not growing. I eat, walk, and breathe my resistance to this scan and the news it will bear. And then like you Dana, once I’m in the hospital, lights turned low, with my Pink Floyd request spinning in the CD player, I find rest and peace. Surrendering like a newborn to the mercy of doctors, nurses, and techs and is so much more restorative than fighting the unknown.

Blog: //everythingchangesbook.com/

Dana: Thanks for your article. I have a neighbor going through the same thing as you and he describes the same problems – fatigue, exhaustion, sweats, etc. He has to take a huge quantities of medications to keep going, too, and he is obviously worried about recurrence.

This weekend I saw an excellent program on Free Speech TV called “Healing Cancer From Inside Out” directed by Mike Anderson, and available on Amazon.com on DVD. This excellent documentary details the benefits of adopting a plant-based diet to heal yourself from cancers and other diseases, and specifically describes the benefits to those with prostate cancer, as well as other cancers.

Having been aware of the benefits of a vegetarian diet myself, and having practiced it for several years in the past, I can recommend that you and others in your same situation get a copy of this DVD and check it out for yourself. Changing your diet can save your life, and this program explains the benefits really clearly.

Dana, regarding your point about getting wearied by questions:

Do you (and by extension other cancer survivors) prefer not to talk about it so much; not to have to answer so many questions about how you’re doing? We ask these questions because we care, and because we think it would be uncaring NOT to ask. But we often don’t think how wearying it must be to you. If you would prefer not to talk about your condition, and instead to talk about books, music, sports, even the weather, that’s useful knowledge for the rest of us.

From DJ:
As always, thanks for all of your observations and comments. I find it gratifying how we’re trying to teach each other. As far as your comment about question fatigue, I want people to approach me as honestly as they can. And I am happy to hear their questions and good wishes. I do think that silence is the enemy. What I was trying to get at is how the questions — no matter how well-meaning — can sometimes be wearing. But it’s our job as patients to shrug off that weariness, and to keep talking.

Dana,

Thanks so much for writing this column. It is very helpful.

William

Best of luck to you, Dana! I can identify with everything you’re saying – I had a stem-cell transplant for Non-Hodgkin’s Lymphoma at MSKCC in 1996 – and though I’m no longer as bone-tired (pun intended) as I was when I was actively undergoing treatment, I’m now in my mid-30’s but still really tired all the time, much more so than I was a couple of years after the treatments. Some recent studies have suggested that about half of us stem-cell transplant survivors experience significant fatigue 10-15 years out, and that most of us are women. I very much hope that your experience will be different (I know that I was delighted to survive even five years, let alone 13!) – and the one good thing about fatigue is that it has an amnesiac effect. Best wishes, and keep writing!

Although you have a different kind of cancer, you sound so much like my husband sounded when he underwent treatment for lymphoma. He asked, “how can I be so tired and still be alive” ? During dinner after he had received his diagnosis I fell asleep at the table. Just passed out. It was so strange. So much of what you say was true for us. Keeping up the optimistic front for friends is exhausting and answering their innane questions about hair loss, etc is beyond useless. Thanks for writing. Best of everything to you.

Finally!!! I was wondering where you got all your strength as during my chemotherapy I was always exhausted and exhausted for a very long time after that. I’m still not my pre-chemo self, which admittedly was very energetic and vibrant for someone my age (I am 59). My oncologist says that it’s my age, not my post disease state. Maybe it’s both. Who knows.

As to telling other, I told only those who needed to know and it saved me a lot of energy explaining and being constantly reminded of my disease. Even during treatments there were times that I totally forgot that I was ill and it was wonderful for both my soul and my body. I have been post-treatments 2 years, 3 months (but who’s counting) and my new thing is constant worry over the slightest symptom. My lymphoma presented as what I thought was a pimple behind my ear so you can imagine my sense of vulnerability as the slightest discomfort. Perhaps this too will pass.

On a bright note, did you notice that dear old Senator Specter gave his Republican vote to the stimulus package on the basis of his being able to increase medical research at NIH by $10 billion? Go, Arlen!!!! Arlen has had lymphoma twice and is very interested in a cure for all of us and thankfully is able to do something about it. It begs the old question, if we can put a man on the moon why can’t we cure this dreadful illness.

Good luck!

Dana,

I am new to your column but share your having to get prostate cancer treatment. Furtunately I was able to have it done Laparoscopicly with no follow up radiation treatment. I advise all to go this way as my post op problems were minimal and I was back to work in less than two weeks.
Dr. Guillonneau of Sloan Kettering was the surgeon and I highly recommend him to your readers.

Hope all goes better for you as time goes on

Mike

Dana, I so agree with you about the fatigue of talking about your health. Friends are just trying to be supportive, but there comes a time when you just don’t want to go through it again. You are healing and ready to move on and you run into a friend who wants to know how you are. You learn to be friendly but curt: “I’m doing well, its all behind me, and I’m ready to move on, thanks much.”

Feel free to read my humorous take on prostate cancer at //www.prostatecancerisfunny.com.

Blessings,

Daniel

Having gone through radiation for a pituitary tumor (not malignant but messed with my hormones and vision just the same), I can say that in the last ten years that I have dealt with my illness, the radiation is what did me in with fatigue and exhaustion.

It’s taken years to regain something close to my previous energy levels but in case they help you, the things that have helped me the most are: regular acupuncture, exercise (when you are up to it), lots of fruits and natural foods, and a focus on foods that are good for your liver. Apparently when you’re ill the liver can retain a lot of the toxins from your meds, radiations, etc. and I can say that since I started focusing on ways to heal my liver I have felt much, much better. Even though I know that sounds kind of hippy dippy…

Fatigue also comes by way of other peoples’ fear who surround you, know of your diagnosis, and expect the worst. This kind of other-peoples’-fear sucks off your life energy—get them out of your space. Someone left me black colored cala lillies on my porch after hearing of my diagnosis of Ovarian cancer even though my prognosis is good—I feel it is gone. One acquaintance, who requires lots of attention, told lots of people I was her very, very, very best friend and totally exaggerated my condition to get sorrow for herself!
Is the cancer gone, will it come back–if so–will it come back fast or slow? Will it kill you if it does come back? No-one knows the answers, not even your oncologist equipped with statistics that lump every age, socio-economic and health status, including stats of how many die from a malnourished body from say, chemo (30%).
Your doctor telling you you will die can kill you.
Get up, dust your self off, eat a good diet rich in greens for energy and healing, and do what makes you the most happy. No-one knows how much time they have left.

…beautifully written…thank you!

The fatigue induced by radiation and cancer itself is substantial and difficult to manage. it is hard to know when it will hit and how long it will last. I am about 40% of the way through esternal beam radiation therapy for prostate cancer and I am also taking lupron, the testosterone block which also tires you because it weakens your muscles and bones. I suspect the lupron is also responsible for psychic fatigue and melancholy. Dana is right is about the focus on the present and the immediate. It is not all bad. I find myself more easily absorbed in things that appeal to me. I have a heightened feeling that I simply do not know where my life is going and intensively living in the present is a way of defending myself against the increased uncertainty. Cancer and treatment are an enormous loss whether the cancer ends up killing you or not. Cancer and its therapies are about dealing with loss, managing loss, measuring loss, defending yourself and protecting yourself against the many things which cancer and the “cures” takes from your life.

Dear Dana:

Your experiences are very similar to mine. While, I do not have prostate cancer, I was diagnosed with having Hodgkin’s disease in 2007. It is cancer of the immune system. First, it was a devastating shock for a 31 year old to have cancer. One of symptoms of Hodgkin’s is tiredness, so when I went into chemo for 6 months worth of ABVD treatment, it was almost unbearable. I could not sleep, eat or function. Some days I would feel like I can conquer the world and the next day, I felt like death was knocking on my door.

I also felt ashamed to tell people I had cancer because of all the questions. Those of us with cancer know that people are being kind and altruistic, but the constant reminders of our illness compel us sometimes to go into depression. Sometimes we just want to fight cancer and not hear it. Also, some people with cancer worry about social relationships. If you are single like me, the questions enter your mind. if I meet a potential mate and I tell her, what will she think? Will she run away? What if my cancer comes back?
.

Dana, I wish you good luck in your endeavors. Everyone is praying for a speedy recovery and hopefully there can be a cure for cancer so that other people down the line do not have to experience what we had to. The key is FIGHT, FIGHT, FIGHT.

James Newborn

I remember, at the end of radiation treatment, finding it a challenge to walk downhill!

P.S. This column remninds me of the Isak Dineson quote: “All suffering is bearable if it is seen as part of a story.”

Two weeks after my da vinci radical pros., I cut my lawn, and my neighbor’s. I rode my motorcycle in three weeks. Fatigue? From the drugs, yes. I it didn’t take long to figure out that nobody wants to hear about my problem, so I stopped talking about it. I had to wear a pad for a year, then had the sling done, and 1.5 years out, I’m cancer free, dry and carrying on. Caught it early and let the surgeon do what he knows best: cut. I studied the options, the European ‘wait and watch’, the seeds and all the other bandaids added up to death. I will not die of prostate cancer.

hi dana, i have a different type of cancer, but i completely understand what you mean about the fatigue and lack of concentration. i took a meditation class then joined a meditation group. i don’t sleep more. but, i can feel more rested and calmer. take care! maureen

Dana: I’m the three year survivor who officiated at his son’s wedding this past weekend in San Francisco. It was a great success, mainly because a great couple made their commitment to eachother. You were on my mind because you in your typically insightful way reminded me in your “best wishes to all involved” sentiments to look around in the moment to the couple and maybe 100 family and mostly young friends who had congregated for this event–instead of just thinking I survived and am officiating at our son’s wedding. You must know that your readers are pulling for you through thick and thin. In your exhausted hours know that we want the good things that are happening to us after our surgeries to become your story, too. You’ve brought us to new awareness which I think makes us better and happier people. For that we’ll always be grateful and think of you more frequently than you can possibly realize.

Thanks so much for writing this. You have had a very hard year and deserve all the rest you can get!!!
I remember crying in the hospital because the nurse would not let me sleep – I had to sit for 2 hours in a chair that morning OR ELSE.
It’s now six months after my cancer surgery, and my sleep patterns are still completely out of whack. There are times at night when I’m wide awake, and times during the day when I’m profoundly asleep. Am I escaping reality? Or am I just tired? Most of the night I sortof linger in a strange zone somewhere between being awake and being asleep. I’ve learned there are different kinds of insomnia – including the kind where you hang out with the dog and your iPhone and maybe some cookies, and the kind where you are dead tired but no amount of tossing or turning or lying perfectly still pretending to be asleep will bring on the real thing. And sometimes I dream that I’m sleeping in my own bed, which of course I am, and I can’t wake up even though I want to. Most curious of all, I have terrible nightmares that I can’t bear to watch, even though they are coming from my own brain. Funny that the mind looks away from its own creation.

Having been a caregiver for someone going through chemo, I would recommend for anyone going through this to make sure the person going through treatment is eating regularly. Someone who is fatigued usually doesn’t feel like going out to the kitchen and preparing a sandwich or dinner, and not eating only makes the fatigue symptoms worse.

Our experience was that the fatigue issues improved, but very slowly.

Dana,

I want to thank you for sharing your very personal experience in such great detail. It takes amazing courage to express how you are feeling at a time in your life like this, to share this with the world and at the same time continue to strive for personal wellness. I have not had a bout with cancer myself, although I have had a scare or two and I have known a few people who have had different experiences and struggles with Cancer. My interest in general reading, health interest and in knowing others, I came across your article. I pray for you to come through this time in your life with much success and to have healthy, peaceful and most enjoyable life once again. Take good care. Sincerely.
–Renee

It has been 4 years sense my prostrate surgery and radiation.My hormone treatments ended a year ago this March. My PSA is still 0.0. I still have moments of fatigue, hot flashes and hip pain. This will probably go on for a while. I continue to wake up at night but a good book and 30 minutes later I am back to sleep. I am a very lucky guy to be able to still enjoy the company of the love of my life my best friend and wife , good wine and good food. Life is very very good. This story is not over. Gay

Dana you are doing a great job of communicating the experience, thank you. After my treatment I finally got people to understand the depth of fatigue by explaining that, “just trying to turn over in bed was too exhausting.”

From my experience and others I know, it’s important to realize that the trend line of recovery from treatment is often very shallow and linear, not curved. You may think, ” when I get back to about 60% of my energy the rest will come back quickly from there,” but this is a fallacy. This trap is incredibly common and leads to a lot of post-treatment depression. You might repeatedly over-extend and get set back emotinally and physically when the batteries don’t even recharge to the fraction you thought you had.

This trap is exacerbated by the feeling of “I just want to get it behind me and move on” and the added expectations of loved ones who have gone through their own wringer and need to regain a sense of normality.

So take it as slow as you need to, and never try to run on reserves. And get off the sleep meds as soon as you can. They will mess you up in the long term and most oncologists won’t realize they need to tell you that.

As far as talking about cancer with friends and acquaintances, that’s very complicated. Honest talk is great but can be exhausting. Happy talk is not too helpful but sometimes a better path in the moment. But if you do enquire about how it’s going, be prepared for a grim answer and all the gory details.