Saturday, November 9, 2013

I couldn't make this stuff up.

More news from BizarroWorld.

Even though I had the Theresphere radiation procedure scheduled for Friday the 8th, I was lucky enough to shoehorn in an EXTRA surgical procedure the day before (Thursday afternoon). You see, my liver numbers were "off" again, and my eyes and skin had again turned a creepy yellow. So last night, I checked myself in for an ERCP, and they placed a new liver stent. The procedure was fast and easy. Although my eyes are still yellow and it's now Saturday. Hm.

Neil and I busted out of the hospital right after the ERCP (nicer to stay home than stay there) and returned for our Friday 6:30am checkin, this time in the radiology dept.

Today's Theresphere procedure was intended to blast the remaining half of my liver with radiation. You've maybe read about it earlier in the blog. Super cutting-edge stuff administered by a smarty-pants doctor. What's not to like about that? (Well, you know what I mean. It's better than a stick in the eye, but it's no Caribbean cruise. Now THAT'S  my kind of fun.)

The procedure happened, and when it was over, they delivered the not-so-awesome news that due to a MALFUNCTION OF THE CATHETER used to release the radiation, I received zero radiation. Instead of flowing into my liver, it got stuck in the kink and backed up somewhere outside of my body.

Still, since they had entered my liver via the femoral artery, I had to lie completely flat on my back for 6 hours while they ensured it healed itself. Healed itself from nothing but a big ol' nasty pointless poke.

And I have to go in for a re-do in 2 week. So much for all the planning we did around childcare and the assumption that I'd need help all next week.

My doctor was confounded. He'd heard of this happening, but it's never happened to him. These catheters cost over $3,000. He talked to the catheter manufacturers to get to the bottom of it. He filled out all the paperwork to ensure we didn't have to pay a cent for this surgery or version 2 of it. He shrugged and said that while it was a shame and a big waste of time, in terms of effectiveness, everything would work just as well in 2 weeks.

So I'm back home now. My friend Julie P from college is here visiting this weekend, and a few more college friends are coming over this afternoon. I'm not much of a host, but with truly good friends, it doesn't matter.

Two days, two procedures, one a misfire. Also, some coughed-up blood. (I'll tell you about it next time).  I don't know. What do you do? WHAT do you do? The only thing we know how to do right now is take it one day at a time. Take it easy. And be extraordinarily mindful of all I have. Which I do, every moment of every day. I'll write more tomorrow.

Saturday, November 2, 2013

Stivarga: the Fruit of Satan's Cauldron

I know I haven't written in a long time. Why? How long do you have? Things are complex.

Bottom line for now, though, is I've started a new chemo which I take in pill form daily. It's called Stivarga, and it is an ASS KICKER. I'm actually taking a break from it right now because after a week of it, the side effects were making aspects of my life intolerable. I'm exceptionally tired and take long naps each day, my feet are developing some sort of painful sores that is making it hard to stand/walk, and my digestion is massively screwed up. Until we can get a handle on some of these, I'm on a break.

I have a second and final Theresphere scheduled for next Friday, Nov 8th.

I just wrote a bunch more about how I feel these days, but I deleted it. Don't really feel like going into that right now.  In summary I'd say this hasn't been our finest hour, even though we are giving our all.