Wednesday, October 1, 2008

[10-01-08] Blood and Fire

[2:49pm]
     Bloooooooood... need more bloooooooood.
     I've had my first taste of it; I feel like a vampire. I want more. The effect 250ml of blood has on someone who needs it is profound. I didn't realize it until I got the 2nd transfusion, but I really needed it.
     Yes, the 2nd one... I'll back up.

     Yesterday, I started with a 2 hour (1 unit) transfusion followed my my normal blood work at another lab. When I got home, I was exhausted, and fell right to sleep. I awoke to a phone call from one of my nurses. "You need another transfusion," she said. Apparently my tiredness correlated quite well with my blood results. Here they are:

   Hematocrit 24.3 -> 23.9 (after transfusion)
   Hemoglobin 8.5 -> 8.6
   WBC 0.3 -> 0.2

     Weird, huh? Instead of going up, my hematocrit actually went down! I suppose I'm right at the Cytoxan nadir; imagine what my levels would be if I had no transfusion!

     So, today I got another unit of blood. And, unlike yesterday, I actually feel a little more energetic. It's actually mostly mental; I still get just about as winded in my walk to the fridge or bathroom. But what I really notice is my improved concentration and newfound clarity of thought -- I must've been a dunce these past days! And I didn't even realize it!


     Next topic: catheter. I hate this catheter. I spend all this time maintaining it and it doesn't even work properly. I mean, the Cytoxan had to be administered via IV because the darn thing wouldn't give blood return. Yesterday, another attempt was made to achieve blood return: it failed. So, I called my Stanford nurse and tried to get this darn thing fixed.
     Oh, and blood return isn't the main reason. The truth is that it hurts if I try to lay on either my left or right side. I guess it's because my arms are "squishing" my chest or something? Regardless, I've had many nights of bad/little sleep because the darn thing hurts. And I can't sleep on my stomach or back -- that hurts my stomach! So yet again I am faced a similar dilemma: sleep with pain or no sleep. I've been having to stay up late balancing that equation... no fun.

     The good news is that my nurse has scheduled me for a procedure tomorrow! Yay! They're actually going to replace the whole catheter with another one, and use a wire or something to help facilitate it. So it should be a quicker procedure than the last one. I believe it will require conscious sedation or something, because they're telling me not to eat after midnight and whatnot.
     Also, Barbara says she's on point with getting my doctors to be liberal with the pain meds. I don't want another couple hours of me complaining (to annoyed staff, I'm sure) that I'm in pain.
     The doctor usually tells me that I wont feel any pain before the procedure. When he does this, I'm doing to ask him to tell me his full name, date of birth, and social security number during the procedure. If he's given me enough meds (like he says he will), then I will forget all of it. Otherwise, I will try to comfort my post-trauma with a little identity theft spending spree :P
     Last time, they told me that I wouldn't feel a thing and would most likely forget the procedure. P-shaw! I could recite most of the music tracks on that mix CD they were playing (mostly, Beach Boys, btw).

     Now that I think about it, the Beach Boys are pretty good. I never realized that until I was forced to listen, in detail, to their music. They have some really melodic slow songs.
     I digress.

     Last subject: Back Pain.
     I think I figured out why I had that ridiculous back pain ER visit a while ago. It was because I was given Neulasta (an extended version of Neupogen). I just started feeling the similar pain yesterday night. Fortunately, it wasn't nearly as bad as last time, but still bad enough so that two Vicodin won't get rid of it (helps, though).
     The pain went away this morning, then came back in the middle of my transfusion. Fortunately, my doctor approved some Vicodin for me and I got a prescription called in. Hopefully it will help; if the pain gets any worse I may be screwed.

     Believe it or not, my Stanford nurse explains that the pain may be a good thing. It seems that a shot of Neupogen is more effective when more white blood cells are present. In addition, when Neupogen causes your marrow to "work" to make more white blood cells there can be pain. The more your marrow works, the more pain (in some people).
     For example, if I had a WBC of 0.1 and took Neupogen, then I would be lucky to get a WBC of 0.3 on the next day. Plus, I probably wouldn't feel any bone pain because my marrow isn't working that hard.
     On the other hard, if I took Neupogen with a WBC of 10. Then I could get a WBC of 20 on the next day; my marrow would be smokin'! And there would be a lot of pain. This is what happened after ICE #1 and I had to go to the ER: I was given Neulasta preemptively so that I could get more ICE within two weeks. My WBC at the time was 9, I believe.
     Oh, and guess where the most WBC producing marrow is? The region around the lower back...so says my nurse, but I'm still skeptical. Regardless, the lower back is up there, I'm sure.

     So, even though I had a WBC of 0.3 yesterday. My nurse is willing to bet that this number jumped dramatically, as indicated by the pain.

3 comments:

Adva Ahava said...

Hey sweetie, just letting you know that I'm back online and reading again. Glad to hear they're replacing the catheter...and I hope they give you good meds for the back pain.

Oleswife said...

Even though I am not with you yet in person, I am with you in spirit! By the way, Taunte Theresa said we could borrow Erin's car to drive locally! That is a huge relief! Love you! Mom

Anonymous said...

Hey Austin!
I think I will break out some of dad's old Beach Boys cassett tapes to listen to in the car, it's been a good while since I have heard them. Mom is stoked to be coming out there, although I think I may starve while she's gone seeing how she brings me lunch every day at school to save me from the terrors of school lunch. On the Vader front (yes, reffering to the vader mask), TJ is planning on shelling out $500 on a full Vader suit. Mom, Dad, and I can't seem to figure out his motives, but I guess you just need to know TJ. Anyways, Hope they finally fixed the catheter issues. Great to have updates all the time, keep em coming!
-Adam