Saturday, February 5, 2011

Speed Bump

Saturday, February 5, 2011

The Long and Winding Road

It's February, and I thought for sure I'd be making my travel plans for Seattle by now. Unfortunately, I hit a speed bump along the way.

I had all my ducks in a row to get into the Seattle clinical trial, and only needed to get an updated MRI to show there are no active spots in the brain. So I went in, excited to finally be at the last step on the admissions checklist. Hakuna Matata, ya know? ROUTINE.

Imagine my surprise when the doctor got the results and it showed what the radiologist believes is active metastasis in a couple (new) locations! Surprise was not the emotion I showed, however. I felt like I'd been kicked.

Well, you know how much I hate bullies, and cancer is just one big bully that I am DONE messing around with; so I have decided to call in the BIG GUNS! I turned down WBR (whole brain radiation) and spinal radiation last August because the spots were all significantly decreased in size or GONE, and there were no active spots in the brain. It just wasn't time for that bullet yet!
Well, now it is.

The MRI shows a new growth in the IAC, as well as a spot growing into the outer tissue of the cerebellum and the spinal nerves at C1. I need to get the remaining spots out of the spinal nerve roots as well as these new spots showing in the cerebellum/IAC areas of the brain, and then I will have to wait a few months to get more imaging.

So now I'm thinking Spring probably IS the best time to visit Seattle the most often, since I have to make so many visits (especially in the beginning) once I'm accepted into the trial. So, onward and forward -- at least we have a plan.
We've increased my meds back to the level it was at before the PPE (Hand-Foot Syndrome) and other side-effects got so miserable for me. We're also going to increase the intrathecal dose in Mr. Puffy. And in a couple of weeks, I'll start radiation therapy every single day, five days a week, for approximately four or five weeks.

The stereotatic radiosurgery (like Cyberknife and Gamma knife) is not going to be appropriate this time, because once again the leptomeningeal metastasis is seeding in like icing ("zuckerguss") -- and thankfully, so far it is VERY SMALL. So this time seems to be the appropriate time to use that lone field-radiation bullet!

I'm disappointed in the delay, of course; but I've learned to be a patient patient. I still believe I will walk the path all the way to cure. Meanwhile, DH notices I have a little more trouble walking again.
I'm fatigued enough that I had to pass on hiking with DLB while he was here to visit, but itching enough to get out there that I can't resist doing "recon."

Today I took a little drive in Big Blue with my posse; the Brown Dirt Cowboy came along in case of trouble. We headed out a truck trail, doing recon for a ridge I want to climb.
I found the best place for us to intersect into the trail (the actual trailhead is closed due to arroyo toad habitat), but BDC called me back the instant he saw me start climbing. I'd seen enough; I knew we were in the right place. I'll be back with walking poles and boots! Meanwhile, it made a great little outing for the posse and a nice little drive for us. But oh, am I itching to get out on the trails again!

As usual, click on any photograph to see the larger version.

"Hurry up!"

I'm nearly positive the intersection with the trail is right at the top of this little crest, but the Brown Dirt Cowboy made me turn around!

It was a nice little workout grade, I have to admit!

The view (looking back the way I've come) from where the BDC made me turn around...

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