Day two post-chemo. The side effects are full-on wretched -- again. No amount of drugs, acupuncture, herbs, or meditation seems to mediate, alleviate, annihilate, or eradicate them. Though these words mean the same thing, I seem to have a thesaurus in my head... thinking that if I say "get rid of" differently, the side effects will magically disappear!
Last week, my oncologist told me that if he could get rid of one of my side effects, it would be the insomnia. He told me that this cumulative fatigue is exacerbating all of my other symptoms. Greaaaaat!
How many sheep can a girl count?
A dear friend suggested that in an attempt to mitigate (the thesaurus continues...) the insomnia, I consult with her friend, Dr. Sarah Zallek, who happens to be a neurologist in charge of the Illinois Neurological Institute Sleep Center. How's that for a Silver Lining? The lining became even more Silvery when Dr. Zellek responded lickety-split.
She asked:
What's your typical attempted bedtime? 9 p.m. to 10 p.m. (at the latest)!
Are you having trouble getting to sleep, staying asleep (aside from the hot flashes -- grrrr), or both? It is easy getting to sleep, but I wake up four to five hours after going to sleep. Then I can't get back to sleep. This has been going on since chemo started. The hot flashes are just added entertainment to my mid-night waking.
Are you taking/drinking anything with caffeine in it at all at any time of the day? If so, what and when, on a typical day? No caffeine at all, unfortunately.
What medications have you tried for sleep in particular so far? Ativan, Ambien (makes me feel rotten), Melatonin, Benadryl, Chinese herbs.
When you can't sleep, do you stay in bed or get up? I stay in bed (and flop around like a gefilte fish) for about 30 to 60 minutes, and then just get up.
When you can't sleep, do you tend to ruminate about worrisome things, worry about sleep itself and how you will feel if you don't get some, or just have uneventful thoughts that are not specifically bothersome? Despite having PLENTY to worry about, I'm not a big worrier. Worrying is a waste of time, in my opinion, because nothing actually comes from worrying. Sometimes, when I am lying awake in bed, blog ideas come to me, so at least I'm a tad bit inspired. Usually, though, I'm just wide awake with no possibility of going back to sleep.
Are you napping during the day? I haven't been (because I didn't want to confuse my day/night schedules), but I could. At this point, I'm thinking that ANY sleep is good sleep!
Below are Dr. Zallek's responses to my answers. Fortunately, it appears as if I have a few things working for me!
Keeping a regular-ish bedtime will allow my circadian rhythm to work to my advantage. When people allow themselves to vary their bedtime a lot it's like giving yourself jet lag -- all the time. A regular wake time is also very helpful in promoting good sleep.
Fortunately I can fall asleep, which helps me rule out a component of psychophysiological (conditioned) insomnia.
Avoidance of caffeine is good. Even a little early in the day can get in the way. The Chinese herb, however, could have a stimulant in it, though. These medications are not regulated in such a way to require ingredient listing, and most contain a broad combination of things. Dr. Zallek suggested that I consider holding off if possible for other hypnotic options if I'm open to them first.
Getting up when I can't sleep is good, she said. Lying in bed for a long time can condition a person and lead to the development of psychophysiological insomnia. Yuck.
When a person wakes in the middle of the night, it is natural to look at the clock. One valuable trick is to cover the clock when you go to bed and set the alarm for your intended wake time (which should be able the same time every day) so you know when the day is meant to start. Then, don't look at the clock (or your phone, computer, DVR, or anything else that tells time) until your alarm goes off. (I look forward to the day when I can use an alarm again!)
When you wake up and can't get back to sleep, don't stay in bed for longer than what feels like about 20 minutes. You're not looking at the clock, so you have to guess on how long that is. But, when you can't sleep, the more you know what time it is, the more likely that will play a part in not falling back to sleep. After about 20 minutes, get up and read or do something that does not give you the time or engage you too much. Then go back to bed when you feel sleepy if your alarm hasn't gone off. If it has, try to stay up for the day.
Dr. Zellek said that I am not having insomnia because I know what time it is. More than likely, she thinks that I am having a biological interruption of my sleep from all I am going through. But, she said, if I can avoid anything else that can contribute to insomnia, that's a good thing.
Not worrying is very healthy! Keep that up, she said. Worrying gets in the way of life and sleep.
Thinking, however, can busy a person's mind enough that it might be hard to get back to sleep during the optimal window of nighttime. So, it's best to distract an awake brain with things that won't keep the mind running (even if it's a good thought process) because that will steal time away from the valuable circadian sleep period. Reading, Sudoku or crosswords, or other quiet activities can do the job. If good, productive ideas come, make some notes if it helps put those thoughts to use and not lose them, but avoid using the computer itself because it tells the time.
Avoiding naps over 30 minutes is generally a good thing. They can steal away from nighttime sleep. However, if a nap can't be avoided, take it in bed and try to keep it to 30 minutes or less. Napping (or sleeping at any time) in any location other than your regular bed can condition a person to sleep better elsewhere, so if you do nap, do so in bed.
In sum, Dr. Zallek thinks that I probably have insomnia triggered by chemo or some indirect domino effect of it. I don't have a bunch of bad habits or worries getting in my way, which is a very good thing. But that means that good habits are only so helpful. She said that I would probably do well with medication as an adjunct to my good sleep habits.
After receiving her medication recommendations, I connected with both my oncologist and internist to discuss these options. I hope that it goes without saying that any and all medical recommendations should be discussed with your physician(s).
In the meantime, my constant Labrador companion Buzz is snoring soundly next to me. What a heavenly sound... I hope to join him in Sleepyville shortly.
Wishing you all a night filled with Silver Linings!
A good laugh and a long sleep are the best cures in the doctor's book. -- Irish Proverb
To read more about Hollye's holistic and humorous journey over, around, above and below breast cancer, please visit her blog, The Silver Pen (www.TheSilverPen.com). You may email her at hollye@TheSilverPen or follow her on Twitter @hollyejacobs.