Fatigue is one of the most common and most frustrating parts of cancer treatment and survivorship. I would even go as far as to say it is harder to cope with than any pain, because pain can be medicated, while fatigue affects nearly every aspect of life – the body, the mind, emotions, and even our sense of identity.
Fatigue can happen at any stage of cancer or survivorship. During treatment, fatigue can be caused by any of the following: chemo and radiation, anemia (lowered red blood cells), poor nutrition, weight loss, sleep disruption, pain, stress, anxiety, and just the overall demands of fighting for life.
Even after treatment, fatigue can still persist. The body needs time to repair the damage from the treatments, and this can take months, even years. Heart and lung problems related to the treatment can contribute to fatigue. Hormonal problems such as with the thyroid, chronic inflamation, depression, anxiety, PTSD, and normal aging are all mentally exhausting.
The common question asked by nearly everyone is “how long does it last?” And honestly, there is no one answer. Many people recover within 6-12 months, while others can take several years, usually battling some sort of intermittent fatigue (good days and bad days). Even 37 years out from Hodgkin’s Lymphoma, I still battle fatigue every now and then, as a long term effect from my treatments and various health conditions that I deal with.
Why is fatigue so hard to get over? Because it is not normal “tiredness.” Sleep won’t make it go away. It can appear suddenly, even with the smallest of efforts. Mental concentration and memory can be hindered, sometimes we refer to it as chemo brain or brain fog. It is frustrating because on the outside, we look fine, and those looking at us cannot understand why we feel so bad, and just can’t push through it.
So, what does help? Doing as much as you can, when you can, if you can, and if not, that’s okay. Stay as physically active as you can with gentle exercise such as walking. Pace yourself. Let me repeat that, pace yourself, alternating activity and rest on your good days instead of overdoing it. Get good sleep. Eat right, I know, the obvious stuff. Don’t be afraid to ask your doctor to look for medical issues, such as anemia, thyroid, vitamin deficiencies, cardiac, or medication side effects. A big one which I occasionally struggle with, manage stress, whether through mindfulness, counseling, or support groups. And lastly, accept that your body’s limits may just be different than before the cancer.
But I want you to listen to this important message. FATIGUE IS NOT WEAKNESS OR LAZINESS! I repeat, just because you are fighting fatigue, does not make you lazy or weak. Fatigue is a real issue, a biological consequence of your cancer and treatment. So much pressure, often futile, to “get back to who you were before cancer” to building a fillfilling life around the body that you have today, many survivors find that once they stop measuring themselves against their pre-cancer energy level and instead learn to work with the current abilities, fatigue becomes more maneagable emotionally as well as physically.
“Ice Cream! Ice Cream! We all scream for ice cream!”, the long time favorite chant. Today, thanks to a presidential act in 1984, is recognized as National Ice Cream Day. I say it is literally okay to have ice cream for breakfast, lunch, and dinner. Okay, maybe a little bit overboard, but… back in 1988, when I was going through chemo for my Hodgkin’s Lymphoma, it was not unusual for me to eat large amounts of ice cream (and pasta). Why you may ask?
Oddly, as part of my chemotherapy cocktail of MOPP-ABV, I won’t get into the individual drug names and issues related to each, I was actually restricted from certain foods, surprisingly and not a problem for me being a picky eater, the restrictions were for “healthy” foods such as brocolli and cauliflower, but also others that I did eat, such as processed foods like cheese, carbonated beverages, and bananas. The reasons ranged from contradictions to the chemo, to issues with bloating and gas, bacteria from eating raw or not cleaned well enough vegetables, or issues with high fiber which can be problematic if experiencing bowel or mouth irritation issues.
But do you know what was not restricted? Ice cream, and of course pasta. Again, mentioning that I am a picky eater, I had no problem with either of these options. However, a warning from my oncologist, “don’t go crazy on this stuff”, making reference to a major side effect from Prednisone, one of the chemo drugs in my cocktail, weight gain.
One thing that I had not expected going through chemotherapy, especially after going through radiation therapy having lost weight, was gaining weight. Anything I knew about chemotherapy stereotypes, was that patients looked almost waif-like having lost so much weight.
Unexpectedly, I gained fifty pounds during my chemo, I believe courtesy of the Prednisone side effects; increased hunger, fluid retention, metabolism changes, and yes, muscle loss. And when I say hunger, I mean ravenous. I could eat pints of ice cream at a time (which by the way also helped with the mouth discomfort), and quart containers of meals made of pasta.
The result of this diet? Something we in the cancer world describe as “moon face.” Now I am not going to post any picture examples of this, because this is definitely one side effect, next to hair loss, that really upsets us. But, just as it describes, the moon is round, and no matter the shapes of our faces, our faces look swollen, and much more round, like the moon as a result of the high dose prednisone intake.
Multiple drugs are often used to treat cancer together, because that is what was studied and determined to have the best chance to reach remission, and more importantly, stay in remission. And in particular, Prednisone actually helps to reduce side effects of the other chemo drugs, and has its own benefits of destroying lymphoma cells, in working with the other drugs to reduce any inflammation, reduce any potential allergies, and there is even a benefit to reducing (though not eliminating) nausea, that is what other drugs are for.
But it is that one super unfortunate side effect, increased hunger, that will easily cause a potentially major weight gain. Which to be honest, gaining some weight during chemo is not a bad thing. I do understand that the fifty pounds I gained was not good. Here is the important part.
Just like the hair loss, the weight gain is temporary. Just like the hair has already started growing back towards the end of the treatments, slowly but surely, so will the weight drop off. And if you use the hair growth by comparison, it is not going to happen overnight.
At the completion of my chemo, the date that I have marked on the calendar of this page, I gave myself a break for about two weeks just to soak in all that I had gone through, now in remission, gathered my thoughts, to produce a checklist of goals that I now wanted to achieve, and think how I could achieve them, and potentially how long they could take.
My number one issue was dropping the fifty pounds I gained. It definitely did not have me feeling well. So the easy part would be, focusing on my diet. Now off the prednisone and chemo, my diet was no longer restricted, and the amounts would be much smaller as my hunger had decreased. Exercise, even the smallest effort, such as a five-minute walk in the beginning and building up as time went on, would make a difference because for two years, I did nothing. As time went on, and I felt my body get stronger, I was able to do more. And yes, the weight did come off, all of it. It did take six months, and if you tell any of us in the beginning how long it would take, it would overwhelm us. But I am just being realistic. If you went through cancer treatments, you likely went through a year or more of some of the most difficult days. You can get through the recovery so much more easily.
The great thing is, of all the things that I “lost” my love for food-wise during my cancer days, ice cream is not one of them. Which is why I am definitely celebrating today.
(image courtesy of Simon Says Dip This)
(image courtesy of Istock)
And with three meals to choose from, it will help me not be limited to my choices… waffles and icream for breakfast, an ice cream sandwich with my lunch sandwich, and a nice sundae to cap off Sunday. Sounds like a plan.
The other night, I was watching America’s Got Talent, and there was a comedian auditioning from a wheelchair. What seemed to take the audience by surprise, was that he made “how he got there” a part of his routine. He had been shot. He told of the response he got from a woman what had happened, when he told her that he got shot at a Halloween party, and her response was, “that’s spooky,” to the shock and dark humor look on the judges faces. He quipped that he was dressed up as Spiderman, but clearly his spidey-senses had failed him. He took several shots at himself over the incident, then turned to the next segment of his audition, applying for jobs that he couldn’t do and then just show up to the interview, such as roofing and rock climbing instructor, saying “this is the consequences if you don’t follow my instructions.” He was actually quite funny, and clearly this helps him deal with his disability.
(image from IMDB)
Brad Williams is a great comic of small stature as he describes himself as fun size like the candy bar. And boy does he have the self-deprecating material. Being caught in a major snowstorm dumping a foot of snow, his fear of tripping and falling and dying because no one would find him. Or his father, lifting him onto the kitchen island and leaving him there as punishment (time out) as a child. Even his wife gets in on it, a black belt in jujitsu, gets into an altercation with a man, only to turn to Brad and say, you defend my honor.
(image from Entertainment Weekly)
And finally, there is Josh Blue, a comic born with cerebral palsy. And yes, the majority of his act is about his disability, and he is hilarious. “There’s nothing more entertaining than watching 12 dudes with cerebral palsy getting off an airplane like some sort of zombie parade.” “I mention that I have cerebral palsy because if I don’t, after a while, the audience is sitting there wondering, ‘does he know…that he has that’?” “I went to NYC and tried to hail a taxi and caught a pigeon (because of the curvature of his hand).”
Have you ever heard of the expression, “laughter is the best form of medicine?” It is a centuries old expression with no clear origin, even mentioned in the King James bible (Proverbs 17:22 (King James Version) states, “A merry heart doeth good like a medicine: but a broken spirit drieth the bones”). Laughter triggers profound, measurable physical and mental changes in the body. By naturally resetting your nervous system, a good laugh relieves tension, boosts your immune system, and promotes long-term cardiovascular health. And then I thought, I have never really heard any comedian make cancer part of their act. Sure, plenty comedians have experienced cancer, but I almost think, would there be too much of a risk of bringing down the audience. Clearly the only ones who would be able to tell jokes about cancer, would be those who have had cancer touch their lives. Well, that would be me, a 37 year survivor of Hodgkin’s Lymphoma. How would I create a comedy bit dealing with cancer, without bringing everyone down with what is commonly referred to as “gallows” humor, yes, that kind of gallow? I think the thing to keep in mind, is that most comedians reflect on their lives with their acts, so this actually is theraputic or cathartic when dealing with themselves. Will everyone who has or has had cancer think the jokes are funny? No. Will at least an irony been seen in the routine? Perhaps. So, I thought I would give it a try. Now I’m sure it looks different on paper, than if you were seeing it live or on video. But who knows… So, here goes.
“How’s everybody doing? My name is Paul and I want to let you know, I’m a 37 year survivor of cancer! Thank you, thank you so much. Now I don’t want you to think that this is going to be a bummer set, hardly. I can hit you right from the gate, my favorite Disney movie was “Finding Chemo, and the most expensive haircut I ever got was chemotherapy. I had heard 8 cancer jokes the day I was diagnosed, and if I had heard another, it would benign. I will let that one sit a little.” Or I can just go into a story.
“When people find out that I had cancer, a common comment that comes out, ‘you’re so brave or courageous.’ Now to be clear, I didn’t volunteer to have cancer, though oncologists love to tell certain cancer patients with certain treatable cancers like mine, ‘if you’re going to get a cancer, this is the one you want.’ Want? What the fuck?!? Nobody wants cancer, it doesn’t matter how successful the treatments are.
Like, do you think I would walk into a doctor’s office, like I was looking for some grey poupon and say, ‘excuse me, do you have anything that involves chemotherapy, radiation, and lifelong anxiety?’ Cancer isn’t a gym membership. You don’t sign up because you want to.
The one comment I find somewhat odd hearing is, ‘congratulations on beating cancer.’ ‘Beating cancer?’ I didn’t beat anything, I survived it. Because if I beat cancer, I wouldn’t still be having medical appointments related to my cancer, in the form of late side effects, 37 years later. To give you an idea how this feels, and you don’t have to have cancer to understand this…
Think of someone robbing your house, and every six months the police call and say, ‘we’d just like to check and see if the burglar came back.’
And let’s talk scanxiety for a second. You don’t wait for the results, you rehearse every possible conversation in your head. Five minutes after the scan you’re thinking ‘I wonder if I should start organizing my garage,’ and the tech says, ‘the doctor will call you.’ Really? How about you just give me a thumbs up or down at least, maybe a smile, something to give me hope for the next couple weeks while I wait for the doctor’s call? You are like one of those people who know the ending of a movie and won’t tell me.’
One of my favorite things to hear is, ‘you look great!’ Which is wonderful, because I actually still feel like shit. But at least I got my money’s worth to make me look that great; modern medicine, nurses, doctors, therapists, pharmacists, family and friends who put a lot in to making me look this good.
The hardest question I get is ‘are you cured?’ I have gotten so accustomed to not using the word cured, even my doctor did not like using it, because of the slightest chance of it returning. It’s kind of like asking someone living in Florida, as I do, so…are hurricanes finished after one blows through? While I hope so, I prepare in case another one comes by.
I will tell you one situation that I did not get used to. Remeber the television show Cheers, when the character Norm would walk in and everyone would cheer his name, yeah, I got that everytime I walked into the oncologist office. Only instead of tasty beer, I got the most toxic of chemotherapy cocktails. I would rather run into everyone at a pizza place or bar.
One good thing that came from my experience, was perspective. Before cancer, I would worry about having matching socks. Now, if they’re both socks, I’m having a great day. People think survivors are fearless. We aren’t. We’re just experienced. We know life can change with just one phone call. We laugh harder now. We hug longer and and say “I love you” more often. We don’t save the good dishware for company.
Cancer took a lot from me. But it also gave me more appreciation for boring days, a beer with a friend, sunsets, hearing someone snort they laughed so hard. The moments don’t seem so ordinary anymore. They’re the jackpot.
So if you’re here tonight because you’ve survived cancer – or you’ve walked beside someone who has, give yourself a little credit. You made it through some of the hardest days imaginable. The fact that were here laughing together tonight? That’s not denial. That’s victory.
Thank you…and remember… the best revenge against cancer is living a life that refuses to let it have the last laugh.
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
Paul's Heart 