Friday, October 19, 2012

Drug-induced Paranoia - But Not to Worry!

Chemo is not easy.  It has a number of side effects, which can include paranoia, irrational thoughts, and sleeplessness.  And that's in the spouses.

I stayed with Beth longer than normal last night to help her through the headache (thanks to Molly for coming to our house on such short notice to watch the girls!) and left once she seemed comfortable and the morphine was clearly working.  Whe I got home the girls were enjoying their 'Friday' night (no school today) explaining the TV show The Voice to Molly.  They still are handling the whole thing very well, and were fine with my explanation of what had made me stay at the hospital.  They understood how sometimes you need someone to sit with you when you don't feel good.

Kids go down easily, and as usual I wake up after a couple of hours.  Unable to get back to sleep and recalling that I'd promised to connect with colleagues in China, I head to the family room to start on the 'night shift' of work.  After a couple of hours, two phone calls and catching up on email, get back to bed around 3:00 am.

This morning, as usual, I texted Beth to say good morning while walking the dog.  No reply. Oh, good, I think, she's left her ringer off so she can sleep in a bit.  So I waited; at 7:30 I call again to check in, figuring the change of shifts at 7:00 had surely woken her up.  No reply.  Hm.  Must have left the ringer off, so I'll just try to check with her nurse and see if she's still resting.  On calling the switchboard, I give Beth's name and listen to the operator as she looks at her screen: "OK, let's see...  Hm.  The thing is... - hold on for a minute." After holding for a minute, the call drops.  While a moment earlier I was torn between a desire to see how Beth was feeling after the night and a desire to let her sleep, I was now surprised that the hospital had put in a computer system that would let the operators know when a patient was coding.  (See also, "Paranoid Psychosis".)

Deciding that was unlikely enough that I should try a couple more times before I headed to the hospital, I tried again to be connected to the nurse or unit clerk for her unit just to see how Beth had slept.  Multiple rings, disconnect.  Same the next time.  A fourth attempt gets me the unit clerk, who seems rushed, puts me on hold and then disconnects me.  Paranoia is now fully in control of my cerebral cortex.  Had I missed another phone call?  What kind of hospital lets terrible things happen to the patients without calling the spouse?  Definitely time to call the Doctor.  His 'you're interrupting my breakfast' voice is different than his kindly patient voice (although not evil, definitely not the same - more gravelly, less soothing).  He assures me that while he hasn't seen Beth's chart yet this morning, he would know if she had coded or had any adverse drug reactions.  I now worry that he will hold this against me (or worse, Beth) when I see him in two hours at rounds.  I try the unit again and finally reach her actual nurse who assures me that she's fine and has just been asleep.  Beth calls 15 minutes later and sounds much better.

Net, all is well - but let me tell you, this chemo is powerful stuff.

PS - the Doc was very pleasant about the whole thing.  Beth had a great morning and day and we are all excited that this is 'hump day', where more is behind her than ahead, and with the exception of this issue, which wasn't even caused by the chemo, is progressing so smoothly.  Keeping our fingers crossed that she can continue the week without any fevers.

PPS - My other delusion is that I'm going to be able to develop a real understanding of this in the time Beth is in the hospital.  I've been doing a fair amount of research and have a nice little pile of clinical study abstracts and articles that I brought to the hospital.  The gang of doctors profess to be very happy to have engaged patients and family who ask lots of questions, but I am increasingly sure that I am only scratching the surface and that med school is probably hard.  For those interested, the best article I have found on Hairy Cell Leukemia (which seriously needs a better name) is in the journal Blood (, which turns out to be a weekly, although not one I've seen in the supermarket checkout line.  For those interested in this kind of thing, I would also recommend The Emperor of All Maladies, which I read a couple of years ago when it came out, found both educational and inspiring and may read again once we're through this.  It's a much more interesting read than the Blood article, although about 50 times as long!

1 comment:

  1. Chad - Thanks so much for taking the time to post. It is so nice to hear the caregivers side of the journey. Beth is so lucky to have you! Hang in there!