[11:28pm]
Here's my counts:
WBC: 0.2 (0.2 yesterday)
Hematocrit: 28.6 (26.5 yesterday)
Platelets: 12,000 (18,000 yesterday)
Have you ever wondered what it would be like if you couldn't talk? Say you got in a horrific motorcycle accident that damaged only the speech centers of your brain... or an accident so bad that they had to permanently fuse your jaw shut.
I always imagined that I'd get along just fine. I'd carry a chalkboard around and communicate through written word.
10 years later, my elementary school daydream has turned into a reality...
Due to severe mouth pain, I can't speak right now... Not one bit.
"Testing... testing... this is a test."
Ok, I just tried talking. The other three previous attempts failed and were quite painful. But I can do it now!
It was the pain meds. Once my mouth started hurting, I began clicking. Not religiously (exacty every 10 minutes), but often enough.
I managed about 4 clicks before the nurse came in and inquired about my pain level. I write on my computer: "6: 7 when talking and when silent."
She had to take off (for another patient, I believe), but in a few moments she was back and we discussed our options with me talking on the computer.
She wanted to talk to the doctor, to get some part of my pain meds increased... I agreed... provided that I have at least a chance to try to get relief.
My strategy was to click as often as the pain machine would let you (10mins). It was my belief that after 30 minutes or so of doing this, that I could begin speaking again.
My experiment failed. She checked in on me, and I still couldn't speak. So, she ran off to contact the doctor. Meanwhile, I continued to type this entry and click every ten minutes.
Eventually, I had so much pain relief that I was able to speak some words. Still couldn't speak most words, and definitely not a sentence. Still, I had decided to quit clicking for a while because I realized that I had had A LOT! Plus, the pain was a bit more manageable.
Then the nurse had returned: The doctor approved upping my on-demand dose from 50mcg to 75mcg. I had specifically requested an increase in the on-demand dose instead of the continual dose. A continual dose is administered non-stop, whether you are feeling lots of pain or no pain at all... since my pain levels fluctuate, a continual dose is rather inconvenient. The tradeoff with Fentanyl is pain and mental acuity vs. no pain and less mental acuity. It would be lame to reduce one's acuity during a time when they were experiencing no pain.
Anyhow, I digress... Even though I can't speak now, the problem seems to have be resolved: pain relief for those nasty situations will be possible much quicker. This time, it took 130 minutes for satisfactory pain relief. With the increased on-demand rate, I should receive comparable pain relief (perhaps greater, because it is quicker) in about 86 minutes.
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Writing this post has been absurdly difficult. Remember what I said about mental acuity? Well, I've had quite a bit of Fentanyl, and my concentration is positively pathetic. I start to daydream mid-sentences, sometimes to such an extent that, instead of the subject-at-hand, I start to type about the dream instead of the blog. Sometimes I just drift off while typing a sentence: "something like thhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh"
In fact, that's why I was especially motivated to finish this little post -- my mind is challenging me!
Also, I'm sure my writing has been unclear and generally awful for this post. So I'm trying extra hard for it to make sense (Additional Challenge)! I'll find out tomorrow just how bad my writing is on large doses of Fentanyl.
Whew, I'm done. That took 2 hours and 10 minutes to write!
Wednesday, November 12, 2008
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7 comments:
You rose to the challenge well in writing this post. It has no spelling or grammar errors that I can see. That means it is actually better than some of your others. Yes, I know that for most of the earlier ones you were not actually doing much proofreading.
Have you considered that in our Runebound game marathon Tues/Wed night, the enormous amount of talking you did that night might have increased your pain level due to irritation? Perhaps not trying to talk so much would be helpful.
I see that your WBC did not go up, nor down. Hope it starts going up soon.
I hope the mouth pain gets better soon, hon! And don't stress too much about the posts ... coherent or not, we're just happy for updates.
I love your writing. Still, it's better to have no pain and not write, if necessary. You'll be feeling better as soon as your counts come up. Then you can write to your little heart's content, fill us in on what we missed. Hang in there. It gets easier from here. Hugs, Alison (Adrienne's mom)
Sorry that you mouth is still, well, being a pain. It's great to hear that your team is working with you to get it under better control. I'm glad there have been no more lectures about clicking too much.
Tell us about your room. Has your family been able to do anything to make it feel more like home? Do you have a window? Good view? I had a room once that had a great view of airplanes taking off and landing at a near-by airport. It was fun to watch the plane lights at night.
I know it probably is an obvious question, but why isn't a topical anesthetic effective against the mouth pain? One would imagine that a lidocaine or benzocaine or phenol mouthwash would be effective, since the pain is on the surface. What happens if you use something like that? It would make your tongue numb, which might make it hard to talk, but it works for severe gum pain after dental work, I don't see why it would not work for you.
>> Have you considered that in our >> Runebound game m-thon Tues/Wed
>> night, the enormous amount of
>> talking you did might
>> have increased your pain level
>> due to irritation? Perhaps not
>> trying to talk so much would be >> helpful.
An enormous amount of talking, eh? I think I talked a reasonable amount -- especially for one trying to interpret the rules... However, I did talk an enormous amount compared to the days prior to Runebound.
That's simply because the day of our Runebound game coincided perfectly with my doctors telling me to take as much Fentanyl as my pain demands.
But, you're right about one thins: Talking a bunch on Tuesday makes it harder to talk on Wednesday.
>> Tell us about your room
My room is awesome! I have a much larger bathroom than the singles do, so it is actually possible to navigate your IV pole around the shower.
I have two chairs to the right of the bed, and one of them is a super nice recliner that my mom finds most comfortable. On the other side of the bed is another chair (great for 4 player board games), my exercise bike (essential for keeping my energy up -- I like to use it while watching CNN in the morning), and a sort of window-table that simply allows me to organize more stuff.
Plus, my room is bigger than any other hospital room I've seen. My room is awesome; I'm stoked!
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