A very close friend of long standing recently chided me, after reading my most recent column ^[1], 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.