Starting this blog with Lyrics from one of my favorite Nine Inch Nails songs. Ah you’re surprised I can even name a NIN song, but actually, I can sing whole albums. I’ve seen them twice, once from the second row of a mosh pit (try keeping that a secret, being Wendy Chioji and all), and…
Clinical trials
Never Say Never (AKA White Flag for Chemo)
I remember a few years ago (more than 3, fewer than 5) Lance Armstrong rang to give me a fist bump as I launched myself into the world of clinical trials. We talked about all the options that were out there at the time, but I said, “No more chemo.” He said, “Unless you need…
It’s Really Not About the Bike
But first (I could get used to this one step backward kind of post), the Admiral’s cruise was terrific. We embarrassed him with singing and a cake, took out canoes one day, went to a GREAT wildlife refuge, and watched the Hubbard Glacier calving. …
Out With the Old. Goodbye, 2018!
Maybe I just like the perfection of timing of it, but I am ending 2018 in the most perfect way. December 31 was my last Proton Therapy session. That’s 20 down, 0 to go, if you’ve been counting along with me. I got my discharge papers, my graduation certificate and photos of ringing the Bell…
All I Want for Christmas is a Successful Appeal, A Super Successful Proton Therapy Experience, and World Peace. (Is That so Much to Ask?)
The lead in this story is that the proton therapy is working. I’m 15 days in now (5 to go!). Dr Simone said I probably wouldn’t notice improvements in breathing and heart function for two weeks, but things started getting better after five days. My heart rate used to cap out at about 117 during…
A Bit of Reality, then things got unBELIZEable (and now, I can’t Belize it, but I’m in the hospital)
“Well, your disease is stable. In a couple of places, we could say there’s a small amount of shrinkage.” Everyone stares at everyone until I say, “Well, that complicates things doesn’t it?” I’d added on one more month of the CRLX101 trial, just to keep that option open after my last CT scan showed growth,…