Letters From Cancerland: Tired? Fatigued? None Of The Above?
A very close friend of long standing recently chided me, after reading my most recent column, for being too busy and doing too much. Of course I would be fatigued if I didn’t cut back. Didn’t I understand that?
I read her letter, set it down, and sighed. “It’s not the fatigue that’s the problem,” I said to my husband, Warren.
“I know.”
But how to convey that to my friend clearly and cleanly?
I finally came up with three check-off categories: Tired. Fatigued. None of the Above.
“Tired” is the easiest mark to reach and one that has nothing to do with having multiple myeloma. “Tired” is what I am when I’ve had a long day (at court, at home, anywhere) and am ready to close down for the day. “Tired” is “Ah, let me get my sweats on, have some supper, and then read.” “Tired” is directly related to being 61½ years old, among other things.
“Tired” is reversible fairly easily. A ten-minute break in a comfy chair, maybe reading, maybe writing, maybe closing my eyes, usually resets me. And “Tired” means I will usually fall asleep easily at bedtime, unless there is dexamethasone (Decadron) running through me.
“Fatigued” is a whole different beast and in me is directly related to my having multiple myeloma and 13 years of treatment under my belt. “Fatigued” has nothing to do with what I have done or am currently doing in terms of activity. I can wake up in the morning after seven good hours of sleep and be fatigued. “Fatigued” does not reverse with a nap or inactivity. “Fatigued” usually means I will have trouble falling asleep easily at night.
The contrast between “Tired” and “Fatigued” is sharp. I live four blocks away from my office at juvenile court and walk to and from work as much as possible. “Tired” means I stroll home at a moderate pace, enter the home, and feel a five-minute break will help set me up for what’s next. “Fatigued” means I can be within a block of my house and have to stop and give serious consideration to whether I am capable of walking the remaining block or whether I have to call Warren or my dad to come drive me home.
I. Am. Not. Making. That. Up. It has happened to me more than once in the past several months.
And “None of the Above” (NOTA)? Ah, that is how the multiple myeloma presents itself in me. (For the record, I’ve always been very aware of a physical sensation with the myeloma. It was present when I was first diagnosed, catching the eye of my oncologist, and has never left me.)
For the past several years, and intermittently before that, I often described the myeloma feeling as a malaise. Not sick sick, but not good either, like I was coming off a bout with a bad virus and was still shaky. With the advent of Darzalex (daratumumab) in my life, I rarely feel the malaise. But there is a growing physical sensation, not terrible, but not good either, that tells me the myeloma is looking around, waving again. That is NOTA.
NOTA is irregular, like “Tired” and ‘Fatigued.” NOTA can and will wake me up in the middle of the night, unlike “Tired” and ‘Fatigued.” And unlike “Tired” and ‘Fatigued,” NOTA can all but disappear if I am focused on an intense activity such as mediation or a good discussion. The moment that intense activity ends, NOTA rolls right back in. NOTA is immune to rest or taking it easy or cutting back on what I am doing. Frankly, NOTA is pretty much immune to anything.
I am grateful that Darzalex has softened NOTA. At this point, it is a part of who and what I am. I have learned to live with it, because I have no choice. And because NOTA is not going anywhere and is not related to anything other than my having an incurable cancer, there is no advantage to be gained by cutting back or taking it easy. All that would do is take away more of the world and my interests from me, and I’m unwilling to give those up.
I will write my friend back and try to allay her concerns. Tired? Fatigued? Nah, NOTA.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
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I totally get it! That's how I feel, too! Thanks so much for sharing.
Yes, right about those three states of being.
Like you, only the intense concentration of work relieves me from all three. Oddly, I am most relaxed when working hardest.
And you hit the nail on the head with NOTA. I have come to think of the aching pain in my left iliac crest as "my friend." Always there at my side, a presence in my life, a reminder of the myeloma, in case I were ever to forget. My own NOTA.
Thanks for the column. Helps me to feel a little less crazy.
I love the article April. It’s a very clear explanation. Proud to be your brother.
This is what I see in my husband as well. Although this last week, despite decent blood tests a week ago, he is extremely fatigued (read: going to sleep between bites of food, etc.) and has increasing leg pain in the leg he fractured last June and is waiting for a second surgery on. I find this frightening as he hasn't been like this (the extreme fatigue) since last spring, when he had an extreme reaction to dex. He doesn't take dex any more and, in fact, is on no meds except his monthly Darzalex, which has been causing no reaction at all. I think he's usually NOTA, as you describe.
When we can get somebody useful on this holiday weekend, I think the new developments need examining.
Your description was so useful! When he's feeling better, I want my husband to read it.
After reading your article, April, I think I'll try to forgot about myeloma, Revlimid, and fatigue, grab the latest Grisham book, and then have a long winter's nap.
I agree with the feeling of malaise. Very hard to describe what feels off but you're right, it is a feeling of malaise. I remember before my official diagnosis, probably in 2003 maybe even in 2002, that something was off. I never felt quite 'right'. Now I know why. Even today, being in a remission again, I can tell when things start to change. My latest kappa LC went up almost 3 points. A trend? Who knows but I can tell when my body starts to feel more of that malaise. Thanks for the column. It's a good one.
Aloha April,
You are the bomb when it comes to describing myeloma! For me it is treatment which brings about NOTA. And, like you, I am able to get past it with deep distraction. Not watching TV distraction, but getting involved in something either complicated or physical that allows me to completely forget about it for a while.
Almost impossible to describe to somebody who is not experiencing it.
Excellent article as always. Keep on keeping on!
Much Aloha and Happy Holidays!
Tom
You nailed it April!
April, this is a perfect description of my husband. Thank you for sharing. It is so hard to explain to family and friends sometimes and great to be able to share these columns with them.
Judy B.
Thanks, April. Great article that is right on target for me and others, too. NOTA covers it well.
Perfect description. We hosted Thanksgiving this year. With the help of my sister-in-law and husband, we prepared a lot of food over two long days. I was tired (and able to sleep!), but not fatigued, despite being back on treatment in anticipation of my second stem cell transplant in a few months. I think of tired as something good. It means you're willing and able to jump into situations you want to be in with two feet and enjoy! Tired is a result of living. Fatigue is an offshoot of the disease and medications coursing through your body.
Bingo! April, we have a winner! Thanks for your clear, articulate description of “the malaise” and NOTA. I’ve got ‘em.
I don’t exactly know why it’s helpful to share these darn cancer-related experiences, but it is! Thanks, again, April.
Some of what I feel is what I call just "weary feeling". Not exactly fatigued but more than tired.
Exactly!
Thank you, thank you! Copying your article to give to friends and family who think I just need to rest more.
Very good explanation of how myeloma can affect the body. Sick, but not sick. Not feeling great, but not really bad either. My husband tries to explain how he feels sometimes but words seem inadequate. Thank you for providing the various options.
I’ve just now read this article. Thank you! I had that general feeling of malaise for over a year before I got diagnosed back in 2013. It progressed to the point where I felt like I was coming down with the flu three or four days a week, which finally pushed me to go to a doctor. I had a complete stringent response to four months of treatment, and remained in complete remission for nearly three years. But I felt that ‘malaise’ again, mildly, last year as the myeloma began to make a very minor comeback. It’s very hard to describe to anyone else; not tired, not fatigued, but just ‘not right.’ Thanks for putting it into words. I’m going to encourage my wife to read this article, as I think it will be helpful to her as well.
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