Wreckin' the Curve
One year ago today, I learned the diagnosis for my sudden hearing loss (Jan 12, 2010) and the palsy in the left side of my face (Apr 6, 2010) had been pinpointed as "leptomeningeal carcinomatosis"--cancer had metastasized to the cerebrospinal fluid and was seeding into the meningeal layer of my brain and spine.
I tried to look it up to read about it, but my blood felt LITERALLY like it had turned to ice water in my veins. The only hope I could take from anything I read to do with that diagnosis was that I had already outlived the prognosis (4-6 wk without treatment). So who cares what the prognosis is now that we've diagnosed it? Obviously, prognoses are just statistics, and statistics are just damn lies (as Mr. Twain explained).
But of course, I was aware of what the prognosis was -- six months with treatment -- and what that standard treatment is (intrathecal Methatrexate). Instead, I tried something different -- something that made better sense to me. And I was blessed with getting to the right doctors to help me.
And, in a reality that is a historical landmark, we were successful in seeing all the cancer eradicated from my brain. Twice now, in imaging, spots have showed in my brain again; most recently in the January scan. And at this point, we do not know yet the results of our efforts to eradicate the spots in the meningeal and now the parenchymal tissues of the brain and spine with radiation. But it has been ONE FULL YEAR since diagnosis, and I AM STILL HERE. And I am still puny from radiation, but I am STILL GOING. I am barely able to get off the sofa and still need lots of help, but I am here and happy and enjoying each day. And that's Life!