Quick note: Thank you everyone for the really nice comments in response to my last post! I know I don’t post that frequently… I am working to change that in the near future so from now on you’ll be hearing from me more often.
This article is a long one, so if you don’t have time to read it now, I recommend you bookmark it and come back to it later, because it has a lot of good information. I also noticed some people have been googling “elana miller wedding,” so I added in a little photo at the end just for fun…
If you’ve experienced fatigue after cancer treatment, I bet you’d do anything to experience the following day:
It’s the morning, and your alarm goes off. You open your eyes. You’re a little tired, but it’s “normal” tired and you’re still ready to face your day. You get dressed, shower, make yourself breakfast without a second thought, and head off to your job. You get a text from a friend inviting you to a concert that weekend, and you think, That sounds fun!” and text back that you’re in.
After work you head to the gym and get a workout in. You arrive home, satisfied that you’ve had a productive day, that you’ve made some money for yourself, and that you felt like a basically normal, interactive human being. Sure, there were some annoyances to your day, like deadline stress at work and the traffic jam you hit on the way home, but you feel happy to be able to experience “ordinary” problems rather than earth-shattering ones.
If the title of this post resonates with you, though, your situation is probably something like this:
You’re a young adult in your 20s, 30s, or 40s, and in a previous life were a high achiever.
Then, you got cancer.
You managed to get through the emotional pain of the diagnosis, and the physical pain of treatment, but now you’re stuck with a different kind of pain—the slow, seeping torture of wanting to get back to your regular life but having no energy to do it.
Your doctor’s appointments have spread out because, well, you’re in remission, and your treatment has ended. You even “look” fine—no one who saw you would guess there’s anything wrong under the surface. You don’t feel fine, though—at all. Even basic activities like cooking, showering, and cleaning incite a sense of panic because you have no energy to do them.
The problem compounds: You’re desperate to get back to your job or get back to school (because you want some meaning and purpose to this life you worked so hard to save), but you can’t even do the basics. You’re stressed about money. You’re tired of feeling a sense of dread whenever you get an invitation to do something (“Oh god, how will I have the energy for that, my friends are going to get tired of me saying “no” to everything all the time…).
Meanwhile, you see your peers, coworkers, and friends all moving forward with their lives, while you are totally stagnant. And if you have to see one more travel Instagram post captioned how great Bali is at this time of year (#blessed #nofilter), you might just #shootyourself.
Here are the kinds of things people say about their fatigue after cancer:
“It hits you like a stone wall once your body is trying to recover after all the chores are done and family errands or business pursuits are seen to. Your bones ache, your head is heavy and your back’s yearning for that soft bed in which to curl into for the longest of time.”
“Fatigue is not something you can put away in a closet – out of sight and out of mind. It usually overstays its presence; bearing down on you despite all the “rest” you give your body. With fatigue, one almost has to take a mandatory lie-down once in the morning and then once in the afternoon, just to store up a supply of energy for later.”
“Preparing my own meal was exhausting – I needed a one-hour nap or rest before actually cooking the meal. It is different from the usual tiredness that is usually short-lived. I was too tired to even sleep. I had sleepless nights, which made me even more tired the next day.”
“People are always telling me that “You look good” and “You don’t look sick”. And as I mentioned, people usually see me on my good days. Somehow when I meet people, I do feel happy and I guess it shows and this masks the fatigue.”
“There are days when I really struggle. Sometimes, it feels like I’m a deep-sea diver wearing a heavy lead suit. As I try to cross the bottom of the ocean floor, it takes every ounce of energy I can muster to just lift my foot.”
The kind of fatigue that hits you after cancer treatment is way beyond what a typical human being ever experiences. This is not “Oh, I just ran a marathon yesterday and I’m kind of tired,” or “I stayed up late last night and I sure could use a nap.” It’s a completely bone-chilling feeling that you literally don’t have enough energy to perform basic bodily functions like focus your eyes, digest food, have your heart beat normally, or breathe.
This was me about a year and a half ago. It was particularly painful in contrast to how I used to be pre-cancer, when I was an uber-active high achiever. I was known as the person who always had “a project” going on (writing, business ideas) in addition to the demands of being a medical resident. I was also really athletic. I was a college water polo player and kept up with sports through swimming, surfing, snowboarding, etc.
Here’s me surfing at Sunset Beach in Los Angeles in my pre-cancer days:
In contrast, here’s me in June 2014, lying in bed, which is basically how I spent most of my life from December 2013 through early 2017.
Here’s me with the strange sponge-bob-square-pants body (fat stomach, skinny stick legs and arms) I developed from the combination of chemo and steroids… a far cry from the athlete I used to be:
(The stuffed dog is a story for another time).
By early 2017 I was in the same place that many cancer survivors have probably found themselves in. I had finished treatment about six months earlier and felt I didn’t have an “excuse” to feel so terrible anymore. I had a lot of chronic pain.
My disability payments were ending because I was no longer on treatment (which I understand). My savings were dwindling and I could not see any discernible path to get better and go back to a normal life of working and supporting myself (let alone simple things like cooking for myself and running my own errands). I seriously wondered if I was just “lazy” now and had to accept this was how the rest of my life would be.
Now, I found this very depressing, but I also believed that there had to be a way out, and so I tackled it the way I had become accustomed to tackling problems in my life—through obsessive research and planning.
Just so you understand a little how my brain works, for context:
When I was 10 years old and wanted a dog, I didn’t just go ask my parents for a dog, I created a filofax with different dog breeds and carefully tabulated FAQ’s to counter the objections I was sure would be raised.
(I didn’t get the dog… my parents tricked me and said I could get a cat now or wait two years and get a dog when I was twelve… what 10-year-old knows how to wait for two years for something??)
Then, when I was 16 and got my driver’s license, I wanted a Karmann Ghia. I saved up two thousand dollars in a piggy bank from working at Macy’s, and by now had discovered color-coded binder tabs and Powerpoint—my organizational presentation skills could have sold ice to an Eskimo.
(I didn’t get the Karmann Ghia though because my parents said it was too dangerous… goddamn it mom and dad why are you so immune to my powers??)
So when I was struggling to figure out my post-cancer energy problem—and I realized most information available online was nonspecific and pointless (“Make sure to exercise,” “Get rest,” “Talk to your doctor”)—I broke out my Moleskin and multicolored pens and started to think about the problem very methodically.
I read about a dozen books and a hundred articles and created a little program for myself. After about three months, I felt good enough to start working part time. This is how I did it…
How I did it: The Energy Points System
When you have post cancer fatigue, it can feel hopeless—but I am telling you, it is not. But to get better requires a mindset shift. There is no silver bullet and it will require hard work on your part. It also requires a lot of patience and time. If you follow the steps I am laying out for you, you won’t feel better in a week, but you will probably feel a little better in a month, a lot better in three months, and perhaps completely better in a year.
I know a year feels like a long time… but it is shorter than never. You’ve already gotten through worse. Start taking steps to feeling better now, and over time those small, incremental improvements add up.
Step I: Get Your Basics Set Up
I learned a lot about fatigue after cancer treatment from reading about what I consider to be an extremely similar syndrome pattern—Chronic Fatigue Syndrome and Fibromyalgia. I read a bunch of books on the subject, and the one I referenced in my last post “A New Beginning” that helped me a lot was:
From Fatigued to Fantastic by Jacob Teitelbaum
Jacob Teitelbaum’s book explains the biology of Chronic Fatigue and Fibromyalgia really well. Essentially, both of these syndromes are not diseases in themselves but are final common endpoints to a number of problems—for example, certain viral infections, a physical trauma or accident, or an illness.
When your body is overcome with a problem it cannot handle it shuts down as a protective mechanism, the same way as when you turn on every light in your house and the hair dryer and the vacuum cleaner the fuse will blow. You have not actually damaged the electrical system in your house, but the fuse has shut off in order to protect itself.
The same happens with your body. Your body is not actually broken or damaged, but your fuse has blown and your body has shut down to try to protect itself. The problem is that long after the physical insult has resolved (in this case chemotherapy, radiation, or other cancer treatment), your fuse is still blown. Healing is the process of turning your fuse back on.
I put myself on the following supplements as recommended in Dr. Teitelbaum’s book:
- Ribose: 5 grams three times a day — Ribose is a sugar that is the backbone to ATP, the energy molecule of our bodies. I use the Nutricost brand, but you can also consider the Bulk Supplements brand, which is a little cheaper and also worked fine for me
- Multivitamin powder — I used the From Fatigued to Fantastic branded product, which worked for me, although any high quality multivitamin powder is probably good): 1 scoop/day
A Quick Note About Prescription Medications For Fatigue
Prescription medications—in particular stimulants such as Modafinil, Adderall, and Ritalin—can absolutely be helpful for fatigue. I have used them and I would use them again if I needed to. I took and passed my psychiatry board exam last year (with flying colors, might I add) while using a prescription stimulant. There is no way I would have been able to get through an 8-hour test and an hour drive there and back at that point without a little assistance.
However, stimulants give you borrowed energy that you will have to pay back, in the same way coffee gives you borrowed energy (and may perk you up at the time, but then you need more and more to have the same effect). You should also count over-the-counter stimulants and supplements such as tyrosine in this category. Stimulants do not change the underlying problem.
Therefore I recommend using stimulants for fatigue on an “as needed” basis (for example, you have a doctor’s appointment you really need to make, or you have to get through your work day, or you have a social event you just can’t skip) rather than relying on them in lieu of the strategies I am describing. In general, if you feel that tired, it probably means you need to rest.
Step II: Get Your Sleep In Order
You have to sleep, and probably a lot more than a typical person. I am nearly two years out from treatment and I still sleep an inordinate amount of time. If I’m in a social situation that requires me being out of the house past 9pm I start to get a little panicked. When I tell people how early I go to bed, they’ll sometimes say, “Wow, you must get up really early!”
Nope. I don’t.
So, just suck it up and accept you will need a ton of sleep. When I was in treatment I was generally only awake 8 hours a day. Yes, I mean that I slept 16 hours a day, usually crawling my way out of bed around noon and then counting down the hours until I “got” to go to sleep again around 8pm and put myself out of my misery.
I probably sleep 8-9 hours/night now, but go to bed an hour or two before that so I can rest and read in bed. Anything less than that will catch up with me and I’ll start to feel sick.
So, you need to sleep, and you probably need to sleep more hours than the average person. So you absolutely need to protect your sleep time and follow good sleep hygiene habits, which include:
- Follow a regular sleep routine: go to bed around the same time and wake up around the same time every day.
- No screens (TV, phone, iPad, etc) for an hour before bed—this is because screen emit a type of blue light that tricks your body into thinking its daytime and suppresses your brain’s normal melatonin release.
- Keep your bedroom cool and dark—use blackout shades if necessary, because any ambient light can interfere with good sleep.
- Use the bed for sleep only and not things like watching TV or work-related tasks. At most, you can read a relaxing novel before bed, but nothing stressful or stimulating.
- If you can’t fall asleep in a reasonable amount of time (~30 minutes), get out of bed and wait to get until you are tired to get back into bed (remember, you want to associate your bed with relaxation and sleep, rather than feeling stressed about not being able to sleep).
Now, the above sleep hygiene measures are the cost of admission, but are often not enough. For some reason cancer fatigue is also associated with the frustrating inability to get restful sleep at night.
If you’ve been in this situation, you know what I mean—that there’s a difference between being “fatigued” and “sleepy.” You are always fatigued, but never sleepy… each monotonous, exhausted day blending into a monotonous, wired night.
If that’s the case, consider talking to your oncologist or primary care doctor about getting a sleep medication. Medication can be helpful to make sure you get adequate sleep so your body has a chance to recover overnight, because bad sleep will just exacerbate the pain and fatigue.
Okay, so now you have the basics in order. You are:
- Taking ribose 5 grams 3x/day
- Taking a daily high quality multivitamin powder
- Getting adequate (probably 9-10+ hours) of sleep a night, with the help of prescription or over the counter medication if needed
Now, we’re on to my favorite part…
Step III: The Energy Point System
I got a lot of questions in response to my last post about the energy points reference I used for myself—let’s call it the Elana Miller Energy Points System. It’s based on a concept I learned about through my research called “pacing.”
The concept is this: When you have cancer-related fatigue, many people will (unhelpfully) suggest that you just need to get out of bed and “do more”… but the problem is the opposite. The problem is that you’re doing too much.
People with cancer-related fatigue, especially high achievers, get trapped in a predictable pattern. You hold yourself to the same standard you had before you had cancer. You overdo it for a day or two, then get exhausted and sick, and then spent a week in bed to recover, and then overdo it again, get sick, another week and bed…etc. The cycle continues and your energy levels become completely unpredictable, making it impossible to plan for the future.
Will you be able to go to your friend’s birthday party next weekend? Or go to work tomorrow? Or go on that vacation you have planned in a month? You have no idea, which is frustrating and debilitating.
On top of this, people who have no idea what they’re talking about will unhelpfully suggest “Maybe you just need to get more exercise.”
Oh really?? Thank you for that very obvious suggestion that never occurred to me, because it’s not like I don’t think about this literally every waking second of my day.
Yes, you know you are supposed to “get exercise,” but how are you supposed to do that when just the act of making breakfast is so exhausting you need to take a nap afterward?
The answer is this: The key to getting out of this cycle is to do LESS, but to do it EVERY DAY.
It’s so important it bears repeating: You do LESS but you do it EVERY DAY.
Then, you save a little bit of energy each day for exercise (just a few minutes at first), and you gradually increase the amount of exercise you can do over weeks and months. And you don’t do this process by guessing—you do it by fastidious planning. Hence the Elana Miller Energy Points System.
How the Energy Points System Works
The premise is this: Every waking hour of every day is assigned a point level based on how much energy is expended during that hour. There are only four point levels. They are:
0 points: Sleeping or lying in bed with your eyes closed
1 point: Reading or watching TV, or some similar mindless activity, while lying down
2 points: Sitting up or standing doing a more engaging activity, such as sending emails, cooking, cleaning, showering, eating, etc.
3 points: Anything out of the house (literally anything — working, running errands, exercise, driving, sitting in the passenger seat while someone else is driving), and anything involving interacting with a person (talking on the phone, or someone visiting you at home, unless you are extremely comfortable with that person, such as a spouse)
There are two really important things about this system that will probably require a mindset shift for you:
- If your eyes are open, YOU ARE USING UP ENERGY POINTS. Watching TV, scrolling through your phone, and reading all use up energy points. THE ONLY THINGS THAT DO NOT USE UP ENERGY POINTS ARE RESTING WITH YOUR EYES CLOSED AND SLEEPING.
- Interacting with people, including talking on the phone, and ANYTHING outside of the house, including the most mundane activities like sitting in the passenger seat of a car—let alone things like working or exercising—use up THE MAXIMUM LEVEL of energy points. For a healthy person there is a difference between standing versus running or between presenting at a work meeting versus zoning out at your desk. But, for you, anything outside of your comfort zone is using up a huge amount of energy. Even looking at bright lights uses up energy!
So starting today, for the next two weeks your job is to record what activity you are doing for every hour of the day, and how many energy points it is using. If you spent half of the hour doing one level of activity, and half doing another level, round up.
A weekday may look something like this, if you are working:
6:00am – sleeping – 0 points
7:00am – wake up, brush teeth/shower, make/eat breakfast – 2 points
8:00am – read news online – 1 point
9:00am – drive to work – 3 points
10:00am – work – 3 points
11:00am – work – 3 points
12:00pm – work – 3 points
1:00pm – work – 3 points
2:00pm – exhausted so you leave work early and drive home – 3 points
3:oopm – in bed watching TV – 1 point
4:00pm – in bed watching TV – 1 point
5:oopm -in bed watching TV – 1 point
6:00pm – make/eat dinner – 2 points
7:00pm – watch TV – 1 point
8:00pm – watch TV – 1 point
9:00pm – sleeping – 0 points
Total points: 28
A weekend may look like this:
6:00am – sleeping – 0 points
7:00am – sleeping – 0 points
8:00am – sleeping – 0 points
9:00am – sleeping – 0 points
10:00am – wake up, eat bowl of cereal while half asleep – 2 points
11:00am – in bed watching TV – 1 point
12:00pm -in bed watching TV – 1 point
1:00pm -in bed watching TV – 1 point
2:00pm -in bed watching TV – 1 point
3:oopm – phone call with friend – 3 points
4:00pm – in bed watching TV – 1 point
5:oopm -in bed watching TV – 1 point
6:00pm – make/eat dinner – 2 points
7:00pm – watch TV – 1 point
8:00pm – watch TV – 1 point
9:00pm – sleeping – 0 points
Total points: 15
See what I mean about the pattern? You work too hard one day, then spend the next day in bed to recover, etc…
Once you have collected a few weeks of data your next task is to review everything and figure out your daily average—the maximum number of energy points you can expend on a daily basis without having an energy crash. This might require some experimentation. You daily maximum is whatever you can expend without feeling worse the next day.
So now you have your number; for the sake of the example let’s say it’s 20. Now at the beginning of the week (I did this on Sundays) you pencil in a schedule for every every waking hour of the day using up all of these points, and no more.
(Did I mention I’m obsessive?)
I can’t stress this enough — you can never use more than your allotted energy points! It’s like money—you can’t spend what’s not in your bank account (credit cards aside). Imagine at the beginning of the day you are given $20 and you get to choose how you spend it, and once you’ve spent it you’re out of luck.
So if you know you need to buy gas in the afternoon, you better not spend your money on on $18 avocado toast in the morning. The same goes with your energy points—if you have something you NEED to do you need to save your energy points for that and not spend them in advance.
When you are penciling in your schedule for the week, you first fill in all the things you NEED to do—things like eating, showering, errands, your job, taking care of your kids, if applicable.
But, you may ask, what if I have so many things I need to do it exceeds my allotted energy points?
The answer is: If you don’t have the points, you can’t spend them!
What if you’ve worked a long day and then you come home and your kids need to eat dinner? I DON’T CARE, LET THEM STARVE… YOU DON’T HAVE THE POINTS! (I jest, but in all seriousness can’t your spouse or friend or parents take care of the kids this one time?)
The point is you may have to sacrifice things that seem important, if not necessary, to you in the short term in order to get where you want to be in the long term.
This may mean getting on partial/full disability for your job, or getting financial help from others so you can reduce your hours, or cutting expenses and moving in with your parents, or depending on your spouse to do most of the work at home, or skipping out on social events. It’s not easy, but it’s important if you want to be in a better place in three to six months than you are now.
Step IV: Integrate Exercise
So you’ve pencilled in the necessary things that you absolutely can’t get out of, and your next step is to pencil in exercise.
Exercise is ultimately the key to this entire system working.
Unlike what you’ve tried to do in the past, though, that hasn’t worked, this time you will start extremely small. Remember our refrain?
You do LESS, but you do it EVERY DAY.
Every day means at least 5 days a week. You start extremely small—whatever you are able to do without feeling worse the next day.
In my case I started doing light weight lifting with the help of a personal trainer, which I liked because I felt it helped build my endurance and fight all the muscle atrophy I had experienced over the past few years. As I got in better shape I added in walking on a treadmill and going up and down stairs.
Basically, you want to do as much exercise as you can without going over your energy points, and increase that amount steadily week over week, about 10% at at time. So if you are starting with 10 minutes a day of exercise, the next week you do 11 minutes. Yes, I’m serious! Then 12 minutes, then 13, then 14, and then when you get to 20 you go up to 22, then 24 minutes, etc.
You will probably need some sort of exercise tracker or heart monitor to do this accurately. I used a heart rate monitor called MyZone, but if you have a Fitbit or Apple Watch or some equivalent that’s great too.
I liked the MyZone because it gave me a number of points to easily measure the energy I exerted (not the same as my point system, but it allowed me to get a quick objective measure of how much effort I was expending). It made it easy for me to stay within my limits, and also to decide how much to increase my activity for the following week. If you’re walking you can use an iPhone or Fitbit to see how many steps you’re doing, and then increase this by 10% a week.
This process can be emotionally painful for a former high achiever or athlete to stomach, since you are probably used to doing quite a bit more than 10 minutes of exercise. But trust me, it is much better to incrementally work your way up than to get stuck in a cycle of overdoing it and crashing.
So at this point, you have filled out your schedule with the absolutely necessary things you need to do, and you’ve added in your daily exercise. Now, as you go through the rest of your schedule, fill in whatever else you want to do with the remaining points you have left (fun stuff, socializing, watching TV). Eliminate activities that aren’t essential if you don’t have the points left for them. A lot of activities will probably need to be eliminated.
You also need to strategically fill your day with periods of rest. If you know you will have a busy day, schedule blocks for time (at least 20 minutes, and up to an hour) when you are resting lying down with your eyes closed (remember, this is the only activity that doesn’t use energy points). Short rests like this serve to strategically recharge your battery.
Here’s what your planned schedule might look like:
6:00am – sleeping – 0 points
7:00am – sleeping – 0 points
8:00am – wake up, brush teeth, make/eat breakfast – 2 points
9:00am – exercise – 3 points **even if you’re only exercising a few minutes count the entire hour as exercise
10:00am – shower, get dressed – 2 points
11:00am – rest, eyes closed – 0 points
12:00pm – make and eat lunch – 2 points
1:00pm – relax, scroll through social media – 1 point
2:00pm – send emails, apply to jobs – 2 points
3:oopm – send emails, apply to jobs – 2 points
4:00pm – rest, eyes closed – 0 points
5:oopm – household chores – 2 points
6:00pm – make/eat dinner – 2 points
7:00pm – watch TV – 1 point
8:00pm – watch TV – 1 point
9:00pm – sleeping – 0 points
Total points: 20
Another key part of this program: You don’t go over your energy point allotment, but you also don’t go over it.
You have to use all your energy points—if you don’t use them, you lose them. If you’ve had a lazy day and have some extra points, get up and do some exercise. You have to get out of the cycle of overdoing it, crashing, and then spending days in bed to recover.
Step V: Gradually Increase Your Energy Points
Now on to what is ultimately your goal: to expand the number of available energy points to a level where you can function and do all the things you want to do. Imagine a world where you can work a part-time or full-time job, go out with friends, enjoy time with your family, and deal with everyday inconveniences without it feeling emotionally and physically crippling. This is all possible.
You achieve this by:
- Increasing the amount of exercise you do by 10% every 1-2 weeks.
- Keeping yourself within your energy points, but increasing your total available number of energy points by 10% every 1-2 weeks.
If one week I was at 20 energy points, the next week I would aim for 22, then 24 the next. Once I realized this was achievable for me, the ability to plan felt really freeing.
If there was an event I wanted to go to, all I had to do was pencil out my schedule and make sure I budgeted points for it. Or if I was scheduling patients, I knew exactly how many patients I could see while reserving enough points to do my commute back home. I knew exactly when I was ready to start working part-time, and then full-time.
For me, between the supplements, good sleep, energy points system and incremental exercise, I was able to be able to go back to work part time after about three months and work full time after about six months. I’m not in perfect shape now but I’m able to work nearly full time, and I ride my bike to work (10 miles a day round trip). I may go to bed at 9pm, but I live a basically happy and functional life.
In case you’re curious, here’s a photo of me now, at my wedding this past May (I got married). And yes, I saved up points so I got to stay up past 9pm:
Readers: Is fatigue after cancer treatment an issue for you? I’d love to hear about your experience in the comments.
Lauree Hinz says
Thank you for your letter! I have wondered how you are doing!
I fully intend to send you a comment about my own situation soon.
I’m always so happy to receive your email. This could not have come at a better time for me. My checkered medical past (cancer, meningitis, sepsis) has left me with chronic fatigue and joint issues. I really get the overdoing it and crashing for days after. Two weeks ago, I was diagnosed with breast cancer, thankfully early, and I’m more worried about being bedbound after the treatment. I think that point system will come in handy! Good to hear from you, always.
Dana Judge says
I had a mastectomy in February and reconstruction late May. When the oncologist told me I wouldn’t require chemo I was so relieved, thinking I could get back to normal, back to my old life, more quickly. Now in September I remain completely and utterly exhausted all the time — literally all the time, every day. I have a demanding full-time job that leaves me no energy or mental capacity to handle even the most mundane tasks. Thank you so much for this post, was honestly starting to think it was just me and it might never improve.
Bethany Osborne says
Joyous news re health & marriage — Best wishes!
Elena, I’ve been following you since Day 1 of your cancer journey! I am so very happy for you and congratulations on your beautiful wedding!
Our daughter, 42, was diagnosed with Stage IV RCC the exact time you were diagnosed. Your blogs were so impactful on our lives. Sadly, our daughter lost her battle after a 2-year fight, but I continued to be uplifted by your progress.
God bless! You had so many people fighting for you!
Diane Wood says
It is good to hear from you and know you are doing so well and sharing your advise!
I have not ever hit remission and have been on Chemo for 5 years along with trials like Immune.
It is Ovarian cancer and gets very little attention but that is changing!
I try real hard and do not quit but it is hard sometimes…..
I will not quit and don’t quit. Ride my bike when I can and walk every day I can.
Good For You…You made it Girl and I am so Happy for you! What a Trip you Had.
You looked so happy and beautiful at your wedding. You have come a long way since i started following you. Sooo happy for you!
Ana Erica Cavatore says
I’ve been following you since day one and I’m happy to see how well you are doing. Best wishes on your marriage. You both look so happy.
Amazing timing, as I read this while resting on a post chemo day.
What a great way for me to plan my activities.
Congratulations on your wedding.
Your point system seems awesome! Congratulations, Newlywed! I am happy to hear that you are still healing!
Mary Giles says
Grateful for your letter.
And, congratulations on your marriage, such a lovely couple.
I was so glad to even find a site like yours. ( Can’t find the blog thing you speak of, but will check some more)
I am now 68 years old.
I got muscle cancer at 17 , and for the next 30 years, had many operations, treatments( even trial treatments), but I was a fighter,. I kept working, got married, and was lucky enough to have one child. So, after about 18 years of nothing, ( It had stopped at about the age if 45.) at 65 I got throat cancer.
Had 43 straight radiation treatments. I swear, after the last treatment, I hit that wall.
Ended up in the hospital for 4 days, dehydrated, and all that crap.
It’s been almost 3 years, now they say the radiation did lots of damage , thyroid, salvary gland, who the hell knows what they will come up with next.
I will tell you this, I feel that I was given an extra 50 years if life.
But, your right, I am always just tired, so worn out.
Truthfully, if it ever comes back, I will NOT get treated again. No more, I am done.
Believe me, when I say I have/had a great life. A very loved and supportive husband, a great daughter, and 2 grandchildren.
And here they said I wouldn’t live past 19 or 20.
But I am through now. I feel like I was given a gift from God.
I have tried to live a good life, and did volunteer work for awhile, felt like I had to give back for what I had. Had a great job, that I loved.
Traveled all over Europe and 4 years ago, traveled the ENTIRE USA.
But, no more. I know there is something wrong.
I am 5’4 and always weighed about 110. But now, I have this stomach, which I think is from the thyroid medicine.It has steroids in it, which I only just found out. So maybe that’s what’s doing that.
But, the fatigue, I am in bed every night about 7:30-8 P M. I get up about 2-3 times a night because of pain, but I walk around, and if necessary take 2 Aleve.
I think I wrote a book here, which I apologise for. Talk about dumping your feelings in someone is very odd for me.
So happy about your marriage.
And thank you for letting me ramble on.
I’m so sorry to hear everything you’d had to go through! Thank you for sharing your story with me.
Thank you for sharing your journey and strategies
I am 20 months post 2 and half years of grueling NHL treatment.
Energy is increasing and still wake up exhausted though.
I started yoga in feb this year and has really helped to strengthen my body particularly my legs, i can now walk up and down stairs confidently and not both feet on each step anymore.
You article reminds me to give myself permission to relax and take it easy. Listen to my body.
I have this sense of wanting to pack into my life as much as i can, in case NHL flares up again. I am now reminded, stop and BE
Blessings to all on this journey xx
Hi Elana…I am so glad you are doing as well as you are. All your points on fatigue related to chemotherapy holds true, and for me, lingers to this day. I was diagnosed with a rare type of leukemia (cmml) which rapidly progressed to acute leukemia (aml) and had to have a stem cell transplant 25 months ago. The thing I’ve learned is to listen to your body; pre-cancer and transplant, I used to push myself hard. Now, I am much kinder to myself and acknowledge it’s okay to rest, and to have a less ‘productive’ schedule.
Hi Elana! I started following your posts one or two posts before you got sick. What a wild ride you’ve had!
I am thrilled to see you are still here and adding your light to the darkness. I’m one of the lucky ones. No cancer yet. Hoping to avoid it.
I have spent a decade fighting fatigue and depression-anxiety that accompanies it, but nothing like the cancer crowd fights. However, I think your one blog post could totally help tons of fatigue syndrome CFM / ME folks and similar diseases. [side note: interesting book I’m reading connecting many of these illnesses to a retrovirus and CDC / NIH cover up conspiracy) per Judy Mikovitz scandal. She studied AIDS then Cancer then CFS/ME and noticed trends between the three.
I posted a link to this blog on Jenny Larson’s blog, and I asked her to repost it for her followers. We’re a quirky clan of mentally and physically ill people trying to live passionately humble and self deprecating lives…often with wine…and silliness.
I am so happy to see that you are doing so well and congratulations on your wedding! I was one of those who Googled Elana Miller wedding when it seemed like so much time had passed since you posted. I thought it would be a great way to see if you were still okay!
I too have followed your journey since the beginning. You and I were diagnosed at the same time at the end of 2013. What a roller coaster!
I can definitely relate to the fatigue. I think the biggest thing that I learned in dealing with the fatigue was to stop giving myself negative talk. Like when I was really tired I would ask myself why am I so damn tired, like I wasn’t allowed to be tired or that I had to have a reason to rest. Or why can’t I just do this simple thing? Some days I would just collapse on the bed and just bawl, both out of frustration and from the pain I was giving myself through these judgments of expecting myself to be like I was before.
I am one of those people who does, does, does. It was very hard for me to sit still and do nothing. So when I was going through treatment I made myself lists. It had four parts -things I can do when I have energy, things I can do when I’m tired or can’t sleep. Things I can do when I feel I need to be sedentary. Things I can do to keep my hands busy or relax. I put everything I could think of under each one of the appropriate categories and would pick one thing off of a list and if I still had some energy left, I would pick something off of another less active list. I always liked lists and I felt like the little boost I got from doing at least Something, even if it was just sitting in the sunshine (yes, that was one of the things on my list for being sedentary) was an accomplishment.
I stumbled across a journal entry when I was looking for my lists and it said: my little body – it isn’t about thinking about my body and wanting other than what my body can do. It’s about this inner knowing that my body is regenerating healthy cells and I need to provide it with a safe, stress- free environment in order for it to continue to thrive in the mission of Health and Wellness. It’s taken 6 chemo treatments in approximately 5 months to come to the point of recognizing how much better my body feels when I actually sleep. Often when I rest I’m awake and paying attention to each little insignificant thought that enters my brain or I’m reading or watching videos. I’m under the impression that my idleness is laziness and the thought of it drives me a little crazy. I become itchy to do something, even if it’s putting a cup in the dishwasher or cleaning the bathroom sink. This last week, I’ve slept instead of rested and everything has been a little easier and I feel better.-
Blessings to you, Elana!
Shari Nitzsche says
I feel like the weight of an elephant has been lifted off me after reading your post. I was a super active, over achiever until my cancer diagnosis. I made it through chemo and into remission. Everyone keeps asking me what I’m doing now that I’m “well”…. I want to scream “getting out of bed after 10-11 hours of sleep and I’m still tired, that’s what I’m doing”! I feel judgement in their text messages like I should be just fine and going back to the gym and training for marathons again. My feet, hands and shoulders ache horribly when I get up so that it takes me a couple hours to stop walking around gingerly.
You are right, every cancer site says get moving, start exercising, your fatigue is worse when you sleep too much. I felt like a big fat loser. What is wrong with me that just showering and pulling weeds for a half hour makes me need a nap? I have beat myself up for months thinking I’m a baby or weak or something worse…you have explained to a T the way I feel every day. I’m not crazy or lazy; my fatigue is validated. I’m crying as I write this because I finally feel like I have an ally in this damn struggle AND a plan to try and follow. Thank you so much….
With much gratitude,
Goldie Perkins says
Elena, my PCP gave me your name in 2014 when I was diagnosed with Stage 3 NHL. You have been beside me every step of the way. How many times did I share your postings with friends and family to validate what I was feeling emotionally and physically. I felt like you were right beside me in the chemo room sharing our stories, our thoughts, hopes and dreams.
I notice myself getting stronger and I have to pull back at times, because as you said, good energy days I over do and then I pay for it over the next few days. This article was spot on. I am so grateful to both you and my PCP, Dr. Gwen Gore. You have been my chemo buddy, my virtual friend and I am so happy that we are both getting on.
Ilene Lerner says
I have been following your journey since the beginning. I am SO happy for you. What a beautiful bride and picture from your wedding. Wishing you both a lifetime of health and happiness.
Congrats on your wedding ! I was just thinking about you the other day ( I also too often have a too full inbox). This was a wonderful article ! So glad you are back to work and living a happy life! My big take away was you are being resonible, patient and kind with yourself during your recovery and like how you specifically spelled out how this process works for you . Often directives are given, “ relax”, be “patient” , “ just do it “, which is like telling someone to drive to a place totally unfamiliar with a map, directions or now a days a gps. All well meaning I am sure but not instructive. Wishing continueblessing your way !
Congrats on your wedding ! I was just thinking about you the other day ( I also too often have a too full inbox). This was a wonderful article ! So glad you are back to work and living a happy life!
My big take away was you are being responsible, patient and kind with yourself during your recovery. I like how you specifically spelled out how this process works for you .
Often directives are given, “ relax”, be “patient” , “ just do it “, which is like telling someone to drive to a place totally unfamiliar without a map, directions or now a days a gps. All well meaning I am sure but not instructive. Wishing continued blessing your way !
Cathie Jonakin Survior, Nurse:) says
Congratulations on your wedding. The picture of you two shows the LOVE. I too have been following you since day #1. My own Cancer experience is 8 years behind me but I know some others who could benefit from your crafty point plan. What a blessing you are to so many. Best wishes on the rest of this wonderful journey of life.
Wow. About an hour ago, I picked a book called Shrink Rap that I bought in summer 2013 as I was trying to figure out what to major in college. While I was skimming thru its pages, I remembered that I emailed a psychiatrist in July that year named Elana and I ended up again on your website.
I apologize for those cringeworthy emails coming from a lost teenager 🙂 and I hope you’re doing well today. Congratulations on your marriage and your resilience.