August 28, 2019

My ependymoma disease is relentless.  Just had my 19th anniversary since my first brain surgery (May 3 2000).  But... it's back!  Literally in my spine in multiple spots even after proton beam radiation therapy.  In Cycle 4 of chemotherapy - combination of lapatinib (originally for metastatic breast cancer) and Temodar.  Not sure how feasible this long-term treatment will be from a delivery and side effects perspective.  Fingers and toes crossed!  Next MRI is September 23 2019 at UVA.  So far a horrible rash and stomach problems have been challenging.  Taking the medication itself is a chore-  and it has a horrible taste.  Plus I am SO tired.

Onward!  Wish things didn't seem so bleak.  Hate this brain cancer.  A summertime shout-out to all my special friends.  Feeling sad, blessed and grateful.