Day 3 in the hospital, on day 2 of 4 of twice daily infusion of Etoposide (over two hours) and Cytarabine (over one hour)–for a total of six hours of infusions a day for four days, spaced about 12 hours apart. So far, the infusions of chemo meds haven’t been hitting me all that hard, but they’re not expected to until next week. Had a little bit of unsettled stomach yesterday and a reaction to the first day’s alcohol-infused carmustine, but that’s been it.
Interestingly, my sense of taste is still coming back in teeny dribs and drabs, despite the kepivance. Still can’t taste my food, but really, really close to almost being able to taste my food.
But what’s really getting me right now is the sleep, or rather the lack thereof. They’ve got me scheduled for these twice daily three-hour infusions at 10AM and 10PM (with pre-meds about an hour before), so the infusions don’t finish until after 1AM.
Between being woken up in the early AM for pre-meds, vital checks, labs, etc., and awakened in the PM by by squawking IV pumps, med bag changes, and more vitals checks, I can’t get more than a few hours, if I’m very, very lucky, of shut-eye at night. And since I’m also a morning person–an extreme morning person, honestly–it’s really hard for me to go back to sleep once I’m awakened in the AM, no matter how bone-weary-exhausted-sleep-deprived I happen to be (stupid human suit).
I got all of four-and-a-half hours of sleep last night. Kept trying to doze off this morning after my 6AM vitals check wake-up, but every hour someone else would come in to give me something, check on something, or ask me something. I finally gave up, out of sorts and groggy, and demanded some coffee. If they won’t let me sleep, then by god, I may as well be caffeinated about it.
I…I think I might be getting kinda surly. I yelled at the poor lady who wanted to clean my room to “PLEASE COME BACK LATER!” Then I felt so guilty, I couldn’t go back to sleep.
And I’ve only been here for three days.
Sounds to me like you’re doing great, and I’m happy for you. The lady you yelled at has probably heard it before, and if you see her again you’ll have the opportunity to say you’re sorry. I’m sure she understands. Still praying for you. <3
Glad you’re not suffering overmuch so far. I hope that lasts. I’m with you on the sleep-deprivation torture of a hospital. You should talk to your doctor about that – there *might* be things they could do to give you a little more uninterrupted sleep, I don’t know. I only know that one of my few hospitalizations had me ready to murder everybody on the night shift, if only I hadn’t been so sick. What is WRONG with them??? Yelling back and forth up and down the corridors? Anyway – best of wishes to you. *hugs* too.
So far the minor saving grace is that the meds they’re giving me to mitigate side effects of the chemo drugs all have sedative effects: benadryl, ativan, diladid, oxycodone. Hoping between those lovely meds, at some point I shall simply pass out and stay that way for several hours, come what may.
Sorry – work with the nurses to have some quiet times when you can sleep. Put a sign on the door saying that you are sleeping and ask people to come back to clean the room, etc? Thinking of you.
*nod nod nod* And if all else fails, there’s always Ambien!
I’d definitely say something to them about needing sleep. They should be able to space out taking your vitals so that it works better with your bio clock!
Just keep focusing on that count down and what that stuff is doing to your system reboot!
Yep. Ignoring the patient’s need for sleep is one of the failings of the US medical system. Dumb, since the criticality of sleep for health is well established.
I agree with the above comments, sleep is especially important under the circumstances, and the hospital should be more understanding of this.