Wednesday, January 7, 2009

there's no place like home... there's no place like home...

Being married to Jody is rubbing off.

You see, she has this ability to absorb bad news and bounce back. I hate to be sharing this today, but we learned yesterday that I'm not out of the woods yet.

No one wanted to hear otherwise more than me. I held it together and was able to figure out the next steps. The facts are though, the metastatic disease just hasn't been done away with yet and I will have to go back on chemo in the next few weeks. We're going to go for another 3 month series but this time we will cross the Xeloda with Avastin to see if we can both kill and checkmate things out of my system.

It was tough to take and both Jody and I spent the better part of the day stunned, teary, and contemplative. The truth of the matter really is though, I'm still in the fight. I'd like to be out of it and I'm beyond ready to be done, but I'm not quitting. I know what to expect and though it doesn't please me, I'll push through.

Today, I had to take care of business at work. I got a curveball that helped firmly engage my brain and take my mind off of the inevitable that I'll be taking care of arranging today. When I got home I cautiously browsed the PET scan images on the CD Dr. Lee let me take home...

Instead of making me feel worse, I actually brightened up a bit. Don't get me wrong! It's kinda creepy looking at quasi-transparent images of yourself; especially when you not only know it's you but you can see it's your own body, right down to your own face! I looked for the four spots on my liver and the spot on my lung where the tracer shows lesions...

I could only find three, really. And that was with playing with the colors of the images. I'm not sure Dr. Lee knew how to use the little browser program that came on the CD because she showed us just black and white images and had a hard time stopping the animation. Maybe being a geek is helping me consume this stuff a little easier? I admit, seeing my scan images spinning and morphing like an old Peter Gabriel music video is kinda cool. Bonus points for spotting the Wizard of Oz reference. ;)

The report had comments about tracer showing up in my vocal cords, rectum, and still in my right lung. But I was in between two very sick weeks that required antibiotics that did nothing for my sore throat. I was also, um, fighting very loose bowels that morning. The analyst reported that I said I'd eaten nothing for fourteen hours though my metabolism was sparking off uptake all over that could have triggered false positives in the scan. The liver spots though, they're the biggest concerns... and they're not big enough to make surgery worth my while.

So yeah, though I didn't get the all clear yesterday there is a silver lining. There has been tremendous improvement over my initial diagnosis; the primary tumor is gone, CEA is now down to 2.8 from a high of 19, there is activity in the places noted ever since the beginning but it is on the run.

I have always been bigger than others and need more medicine when I get sick or a headache. When the bottle says "4-6 hours" that always meant 3-4 hours to me. Thus, I'm not surprised. I'm not thrilled, but I'm not surprised.

Before I get back on the poison, I will have to have another colonoscopy. This has always been on the horizon and is warranted now to rule out the tracer showing up down in the surgery site. As neato as the PET scan is, it is still high tech holistics. A 'scope will put eyes on the problem and allow for a biopsy to be taken of anything actually seen by a doctor.

I also need to have my port checked out. The last two flushes haven't gone very well and I'm worried it has closed up or otherwise quit functioning. It had been getting accessed every other week for a large portion of last year but, since July, it was just every month or so to be kept in good working order. The Avastin I'll go onto shortly goes in intravenously and, as always, I'd prefer not to needle my arm.

I also need to open a line to my new health insurance company, Aetna. I will dearly miss Denise at Kaiser, but I had little choice... Lockheed dropped Kaiser. But I picked up the Total Choice option with no referrals required, the exact same out of pocket premiums as the HMO, and $500 from the company to use toward the first $500 of any out of pocket expenses I do rack up. Not too shabby so far. I just want to make sure there is someone on my side as we try to finish this fight.


Lynn said...

Well darn, this is not the news I was wanting to see!!! I'm sorry you have to continue with chemo but you must fight to win the war, right?!

Hang in there, take care of yourself (and let your lovely wife take care of you, too) and keep up the positive attitude (though I do know how hard that can be at times).

((hugs)) And keep us posted on how you are

Bonnie said...

Poop. Just poop.

Bonus points for spotting the Wizard of Oz reference.

Guess you paid attention to my blog notes, eh? I'm more than willing to work on visualization with you John. Oz might work during chemo like it did for me during radiation. If not, we'll find another way to address this.

Maybe car related :-)