[11-08-08] Long Night + Fentanyl (Day +5)

[8:48am]
     Last night was a looooong night. Not a hard night; a long night.
     We had several objectives:
       1: IVIG (Norwalk Treatment) - Represents about 4 hours of the nurse coming in and out.
       2: Bag of Platelets (Due to some rectal bleeding I discovered on Fri.) - Represents about an hour of nurse coming in and out of room.
       3: Two units of blood transfused (Hematocrit is at 26 -- bah, I could go way lower, but I guess it's better to be safe than sorry). Plus, those bags are liquid energy -- like the stimpacks from video games - "Let's get some!" Two bags represents 6 to 8 hours of the nurse coming in and out of the room.
       4: All the usual stuff -- Antibiotics, hydration, etc...

     Calculate the fact that the PICC line has only two lumens, and you have a long evening indeed -- We just finished a couple of ours ago.


     So where does Fentanyl come into play? Where doesn't it! Well, I would fall asleep, the nurse would wake me up and ask me my current pain -- I'd usually say something like 4 or 5 (because the psin is usually high upon awakening). Then, I'd click the Fentanyl clicker. This would, in turn, lower my respiration and make me feel a heckova lot better.
     But the respiration going lower wasn't a good thing if I was to be going to sleep -- ya gotta keep breathing in those dreams of yours!
     Accordingly, they put be on oxygen durning the night.
Despite the respiration, I was in pain, so I continued to click away. Maybe I'm worse at night because there is no mental acuity/pain tradeoff when I am asleep...

     Anyhow, I got a little Fentanyl lecture. Not a stern one, just a "Hey, don't be reckless with this stuff -- it's dangerous" lecture. In a way, it was quite disappointing, because I like this nurse and I most certainly do not use Fentanyl recreationally - I may joke about it, but it is really all about pain relief.

     I recall a nurse answering a question from my mom on the suject of chemical dependency... The nurse replied, "As long you as take the drug as prescribed: to relieve pain, anxiety, or whatever it is indicated for. there is zero percent chance of addiction.

     You may be able to tell my writing is being influenced by Fentanyl at present, but should that prevent me from taking more if I am in pain?

No Way!

P.S. - I finished assembling my metal praying mantis that Barbara got for me -- it's awesome!



[9:54am]
     I just had to be instructed in general ass care and proper application of lotions. This is because of the previously mentioned problem in the rear. *sigh* How embarassing.

[11-07-08] Things are Great (Day +4)

[7:19am]
     Let's see... time for yet another update on my general well-being and state of mind.

     Physically, the mucositis has deteriorated to epic levels. I tried to take a ship of chilled milk this morning, but it literally scalded my mouth. Just out of curiosity, I pondered to myself how could something that is chilled taste like simmering water. Then, I proceeded to mouth the words "hot, hot, hot" as I'm fanning my mouth with my palm -- sign language for "I just ate a whole heap of Jalapeno Peppers," I'm sure.
     But even without food/beverage, just repositioning my mouth alone can cause quite severe pain. Talking is very, very difficult. And, as Barbara has said, I've learned that certain words be only said through clenched teeth, for safety purposes.
     Still, Fentanyl is my friend. And as Dan said in his previous email: "Hang in there bro...click......click....click...clickclickclick."
I couldn't agree more

     However, there's the painful mental acuity vs. stupid and painfree tradeoff. To those used to my writing, it may be painfully obvious that I've been clicking the pain away. I keep nearly dozing off mid-sentence, so this may be an entry best kept short.


     Then there's the myriad of skin problems. Now, just the phrase "skin problems" sounds like it can be treated with little more than daily moisturer and some SPF 10.
So let me rephrase that: "There's the myriad of skin/host rebellions with a scattered collection of skin terrorist splinter cells."
     That's better. My chest looks like it's been subjected to an Iron Maiden with a sort of chicken pox.
     But, I believe I went into a little detail yesterday, so I'll spare ye. Lets just say I've been vigilant!


     Anyhow, nausea is at a low because I'm not eating much! Woohoo! Err, I take that back, completely. I was about to take pills while entering a blog entry, but nearly threw up. So, nausea's not completely gone. But I'm getting tired, so I'll just summarize like this: My symptoms are getting worse. My management of those symptoms has gone through the roof on both an emotional and a chemical level. In short: Things are great!

my Things are going smashingly well!

[10-30-08] Barbara's Update - ICU

8:55pm Thursday
It is now 8:55, and Marie and I are waiting in the "Family Waiting Room" next to the ICU, an overcrowded, noisy, unpleasant place with loud conversation (most in Spanish) and unruly children. Austin is in room E260. I was able to speak to him for a moment. He appears calm, and his fever feels lower. The last I heard it reported was about 102. His room has a busy influx of nurses and doctors, so he is getting a lot of attention. At this point, his blood pressure is a matter of concern - it is in the vicinity of 80/40. However, his pulse is described as very strong.

The procedure as far as I know it now:
1. Install an arterial blood pressure monitor. This gives better BP monitoring.
2. Remove the Hickman catheter. This is what they suspect is causing an infection. When they remove it, there are signs they will be able to see easily indicating if an infection is underway. However, if they see nothing, that is not proof there is no infection.
3. Install a new port. This one will be in a vein near an elbow. (uncertain if I heard this correctly.)
4. Administer antibiotics - they have been doing so a couple of days already. Cultures are in progress, and if any are positive that will assist in optimizing the antibiotic.
5. Delay Cytoxan a day. Stay in ICU for at least a day.

We are worried of course. An infection for any patient with a near-zero white cell count is a serious matter. They have not said for certain that they believe this is a bacterial infection instead of a chemo reaction, but it appears that they must at least assume that is the case until proven otherwise.

Updates to be added, hourly if necessary.
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Update, 11:05pm Thursday
We were able to visit him finally. Status:
1. Hickman catheter is out. They saw no signs of infection on the catheter, but the site seems inflamed, so they feel that is likely the cause.
2. An arterial BP monitor is installed in his left arm. Doing this, they found his central BP to be normal. That shows that the fever was causing his peripheral BP to vary. That is good to know, and is presumably good news.
3. He has a new central port installed in his neck. Wow, that was fast. It is on his right side, and I get the impression that it is somewhat annoying for him.
4. His fever is closer to 101 now, going down slowly. He says he feels tired and wants to get some sleep.

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Update, 0900am Friday
It is frustrating trying to get through to the ICU by phone. Only on the 5th time did I get connected to the right room and the phone was answered. The nurse handed the phone to Austin. When I asked him how he was doing, he said "Not great." His temperature is 38.3C which is 100.9F. That is considered to be a low fever. He said his temperature went up again, but if it is 100.9 now, it must have fallen again - or I got the wrong temperature from him. It was a very short call. He also reports that he is uncomfortable and has not eaten anything.

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Update, 10:20am Friday
Phone call from Marie. She reports that the doctors have seen Austin, and that he is "doing much better" and that he may move back down to his BMT unit later this afternoon.