Thursday (11/15/07)
Well, space fans, today was supposed to be my first day of chemotherapy, but this rhabdo thing has thrown a wrench into the oncologists' plans. Treatment for rhabdo and carcinosarcoma are very different, so we need to wait for some sort of grand pathology consensus before proceeding. Stanford is going to do some more stains to look at this rhabdo diagnosis - in addition, we are sending slides and tissue to Emory for a third "tie-breaker" opinion. Hopefully they won't come up with something brand new. So, yes, once again, it's time to play the waiting game...
"Awww, the waiting game sucks! Let's play Hungry Hungry Hippos!" (Homer)
On the plus side, I've switched medical oncologists, since mine was going away for 10 days, and the new one is awesome. She's really on top of things and had already started to make things happen by the time we met with her. She's also the best sarcoma specialist at Stanford, so I feel I'm in good hands. I'll be getting a bone scan at some point, just to make sure it hasn't spread to the bone marrow, and on Monday I'm getting a PICC installed (it's a long catheter that goes into the arm and up into the larger vessels so they can infuse the chemo drugs without irritating the skin and smaller vessels too much). That way, when we hear the final diagnosis, I'll be all ready to go for chemo.
Still, on top of all this, there's more bad news. For some background, the worst manifestation of this disease started back in Sept right after Labor Day, when all of a sudden I couldn't urinate anymore (well, I wasn't fully voiding anyway) and had to go to the ER. I had felt a lump on my (shield your cyber eyes if you don't want to visualize) left buttock down near the midline and close to the prostate area a couple days before. It was there for a while, and I tried to have people feel it and figure out what it was. In the ER they didn't think much of it, and then it seemed to go away afterwards. It seemed to come and go over the course of the next couple weeks (bizarre, eh?) - it was there after my TURP surgery, but then it went away. By the virtue of that fact alone, the docs seemed to think it was no big deal ("Tumors don't come and go that quickly," said the urologic oncologist). In addition, it seemed to time its disappearances for when I was seeing my oncologist, so he never really felt it. A few days ago, it came back. Luckily (or not), it stuck around for my appointment yesterday, and my new superstar oncologist wanted to do a fine needle aspiration to figure out if it was just pus or if it was something else. Of course, you can probably guess it was something else. They came back 5 minutes later and said something was suspicious. Later that night, superstar called and said there were indeed tumor cells in the lump.
So now, somehow, the insignificant "butt bump," an in-joke among my family for the past couple months, is a real enemy, sitting there and taunting me. "Ha ha, none of your scans went low enough to catch me, eh?" (I imagine an evil French accent) "I am so elusive and slip away just when you're going to try and show me to a doctor..."
URRRGHHH.
I guess the good news is, it's still mostly contained - if it's rhabdo, chemo should take care of it, and if it's not rhabdo, surgery shouldn't be too bad. But really? AAAAARRRRGGGHHHH.
Friday, November 16, 2007
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8 comments:
Hi Alex,
My sister has kept me up-to-date on your news. I am continually impressed by your spirit & candor on this blog. Please know that my whole family is thinking of you & hoping for the best!
Anastasia
Enthusiastic doctors rock. I think the butt-bump is a kind of dance ...
AAAAAARRRRRRRRRRRRGGGGGGHHHH is right! Man, that's just...not fair at all. Hmph.
Maybe we could all line up to kick you in the ass and kill your butt-bump for you?
Hang in there, friend. The names of the cancers are starting to sound like dinosaurs... veloci-rhabdo... sarcosaurus...
I'm stretching to come up with a jurassic park pun, but it just ain't happening.
Crap Alex, wtf?? I mean, great news about the new oncologist, but this butt bump must be taught a lesson or two! Take that butt bump to school!
Hi Alex,
Got here through Serena's facebook status - keep it up, I'm rooting for you, and I'll be praying too.
Liz
Hey Alex.
I just got caught up. It's awesome to hear you're in such good spirits. Hang in there!
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