New year, new advocacy work to do! Today was one of my sessions for the Kidney Cancer Research Program, a US Department of Defense medical research program funded by Congress. I’ve had the privilege to serve this program as a grant reviewer for several years now, as it was one of the very first advocacy… Continue reading Standing Still to Look Back
“With one deep breath, and one big step, I move a little bit closer. I move a little bit closer for reasons unknown.” – The Killers, “For Reasons Unknown” I’ll try to refrain from turning this into a Killers fanatic post, but considering I listened almost exclusively to The Killers during my first year of… Continue reading août
“Hang on, hang on when all is shattered, when all your hope is gone. Who knows how long? There is a twilight, a nighttime and a dawn.” – Guster, “Hang On” It was June 2016. I had just been released from a ten-day stay at UCLA after the most grueling surgery of my life. I… Continue reading Lemonade
I come from resilient people. My maternal ancestors were forced out of Nova Scotia as part of Le Grand Derangement, when the British “shipped our Acadian ancestors down here to die,” as my mother used to say. She wasn’t wrong. Le Grand Derangement was an act of ethnic cleansing, a genocide. It’s estimated that half… Continue reading Ça c’est bon, sha.
It’s been 3 years and six months since I started Cabometyx. The medication that not only saved my life, but gave me time I had no right to expect or deserve, if you asked papillary renal cell carcinoma. I joined the PAPMET clinical trial as one of its very first patients, and was randomly assigned… Continue reading Turn The Page
‘Twas a few days before Thanksgiving, and a boogeyman was lurking in my chest. What, that’s not how this story goes? It WAS the Saturday before Thanksgiving though as I lay in bed watching TV with my husband when I suddenly had sharp pains in my left rib. “That was weird,” I thought. I actually… Continue reading The Rougarou
“Oh, let’s go back to the start.” – Coldplay, “The Scientist” I was 17 years old the first time I stepped foot in Washington, DC. I had barely left the state of Louisiana before then; it was, after all, the first time I had ever left the South. Bright-eyed, with the world set before me,… Continue reading Full Circle
Year two. Still standing. Still here. Back to my new normal so much, I only stopped and thought to myself a few times, “Wow. Just think where I was two years ago today.” Another notch in the belt. Dr. V and my research nurse were both horrified and laughing when I told them today was… Continue reading Deux.
I made a scary decision this week. OK, that’s being a little trivial. I’ve made far scarier decisions in the past 22 months, you know, like treatment plans and surgery decisions and writing out my will and my wishes for what I’d want if the worst happened. So yeah, nothing on that scale, by far.… Continue reading Cabo Hair, Part II
“If they say Who cares if one more light goes out? In a sky of a million stars It flickers, flickers Who cares when someone’s time runs out? If a moment is all we are We’re quicker, quicker Who cares if one more light goes out? Well I do” – Linkin Park, “One More Light”… Continue reading Survivor’s Guilt
singlewhitekidney 