If my cancer journey is taught me one thing, it’s that nobody really knows anything. Doctors and scientists are trying their best but, no matter how authoritative they appear, you are the only one who really knows what’s going on with your body.
(For the record, my cancer journey has taught me way more than one thing.)
My latest brain scans from this week show continued stability and my primary neuro-oncologist finally said he believes all four lesions are radiation necrosis. He did make a point of acknowledging that “I told him so” which is why he’s my favorite oncologist.
Since my body scans have been consistently clear, this great news means that I’ve officially been cancer free for two years!
Obviously, brain radiation necrosis is no joke. It’s sort of a bummer that it hasn’t improved much but mostly miraculous that it hasn’t gotten worse.
What makes me giddy excited about this result is that my doctors are now on-board to let me reduce my drugs as much as I can in balance with managing my aphasia and seizures. I’m getting the impression that they had given me palliative treatment and realize that I might actually be alive for awhile.
It’s been almost exactly a year since my first seizure and starting dexamethasone. I cannot express how excited I am by the idea of stopping. I need to taper slowly to minimize withdrawal but today I took 75% of my normal dose. Fingers crossed.
I’m convinced I can keep my neurological symptoms in check with HBOT, exercise, meditation, and all those good treatments.
A year of steroids
On the left, this week a year ago. On the right, me today. In between: 4mg of dexamethasone a day. No change in diet except to increase weekly water fasting from 1 to 2 days. Also, I took up jogging. My insides feel worse than my face looks.
Finally, I turn 43 next week, guys! Insane to think that I was never supposed to get past 40. No complaints.