Tuesday, May 31, 2011

Seattle Bound?

I've barely been able to function in my human skin the past few weeks. I was going along fairly okay, recovering and rebuilding from rads, when I somehow plummeted off a cliff. The pressure in my ear, the nausea, the weakness...but worst of all, the weirdness I feel in my head. We've tried different things, but so far I have not regained my quality of life yet. I am stuck on the couch due to a kind of extreme vertigo and nausea and weakness.

It's been like a really bad drug trip lately. I can't stand the way my brain/head feels. I made the rounds of doctors and imaging, and our best guess is I'm just still feeling some very strong and obnoxious neuralgia from the WBR.

Because, so far, all the imaging tests are coming back that the rads has controlled the spots in the spine and brain...and yet, the spot in the left hip bone has worsened (needed criterion). Which puts me on track for the clinical trial in SEA!

So I'm just riding each day, doing what I know I have to do---nourishing my body as quickly and effectively as I can. Getting my strength and my body built up. Get ready to ride in the car for 2 days to SEA.

I'm not really functioning well enough to focus on anything other than staying as conscious as I can and getting food in me, so I'm not really available these days on the internet. But I AM still here!

Saturday, May 7, 2011

Where Are We?

Round and Round

I've continued to worsen in the ear pressure, pain, and puking departments; so I made the rounds of all the doctors.

First I saw my oncologists who take care of Mr. Puffy and the portacath infusions. Like me, the increasing ear pressure concerns them that it's coming from the Internal Auditory Canal (IAC). To me, it feels as painful as a middle ear infection threatening to burst my eardrum. I mean, IT HURTS! So these doctors are glad I am consulting with other doctors and investigating Cyberknife, because what they do won't affect that IAC.

Meanwhile, we're continuing with what we've been doing (although we did boost the intrathecal dose another 5 mg). We all agree I am still too puny to add any of the very toxic chemotherapy back yet, so I remain on mostly monoclonal antibody drugs that should cross the blood-brain barrier.