Dear Brave Ones,
I’m in Santa Monica, California to take part in an exciting new medical study / clinical drug trial my Boston doctors recommended to stop the progression of Chordoma cells in my body.
Yesterday was Day 1 of an infusion of a combo of immunotherapy and chemo directed by Dr. Santosh Kesari of St. John’s Cancer Institute in Los Angeles. I feel tired, but overall great today. The plan is to return to California once a month for a 1/2 day treatment for at least a year. I shouldn’t lose my hair or even feel too bad, and the results for others have been super promising. The only help we need is visualizing my own immune system’s T-cells finding the hidden cancer cells and working like Ms. Pac-Man to gobble up those bad cells!
I’m also here with a purpose. I firmly believe that this trial and others like it will cure Chordoma in the near future. The landscape for a new patient is totally different than it was for me when I was first diagnosed nine years ago. Today they drew my blood, for example, to identify which targeted therapies could work specifically for my DNA profile! Trials like this allow us to learn a lot about different therapies and doctors can increasingly choose the right therapy based on the genetics of the person and their tumors. It’s not too big of stretch to imagine that we will crack the cure for several rare cancers in the next 5 years with customized treatment. So there is good news out there, after all!
One thing that is lifting me up: My Poetry-for-Peace Challenge on Instagram (@susierinehart). On Wednesday, April 30th, 8pm ET, thirty brave souls will perform a poem they learned by heart this month. If you’d like to join in and listen to some of the most stunning, delightful poems by poets such as Mary Oliver, Ross Gay, Ada Limón, Billy Collins, Emily Dickinson, Naomi Shihab Nye, and others, please let me know.
In challenging times, it helps to be on the lookout for beauty. I happen to find beauty in poetry (this wasn’t always the case, but it is now) and in YOU for choosing brave over perfect!
Where do you look for beauty? What brings you delight these days?
Love,
Susie