May Got Away From Me

Cancer Diary

May Got Away From Me

May was Glioblastoma Awareness Month. I had every intention of promoting that/blogging about it/sharing lots of Facebook posts. I went AWOL instead. I felt like I needed to pull the covers over my head and have a pity party. God knows I love a good party, especially when I’m the guest of honor. 

My May 12th MRI/Brain Scan was not what we were expecting. The results showed new tumor growth, in the brain stem, inoperable due to location. This pretty much means everything I’ve been doing all year to slow the growth of this cancer is not working. I had what they call “Standard of Care.” Which is called the Stupp Regimen. It  included brain surgery to remove as much of the tumor as possible, followed by 30 days of radiation and 45 days of chemotherapy. 

In addition, I was accepted into a Clinical Trial at NYU Langone Perlmutter Cancer Center. This was an immunotherapy trial already in phase 3 and soon scheduled for FDA approval. I had to be in New York every two weeks for two months, then on an every two month schedule, presumably for the rest of my life. I received my first two month vaccine on April 16th, and had a flight scheduled for the 2nd two month vaccine on June 3rd. I was also on a new 5 days on 23 days off chemo regimen. That May 12th MRI changed everything. Obviously, the treatment wasn’t working. I had to leave the clinical trial, stop my chemotherapy, and come up with a new treatment plan.

I was fortunate to have two teams of Oncologists working for me. The team in New York, and the team in my hometown at the Joe Arrington Cancer Center in Lubbock. After consultations with both teams I chose to get their recommended treatment at home. I am grateful to the doctors at NYU, but the frequent travel was hard on me. I will miss the time I got to spend with my New York family, but I love and trust my team in Lubbock.

I am currently halfway through a 10 day targeted radiation series, my oncologist is developing a new chemotherapy plan, and I am going to use an Optune Device - which is basically an “electric hat” that must be worn 18 hours a day. I love hats, but this is not a cute hat AND I have to shave my head. 

At least that is the plan right now. Things can change again. Today I spent three hours in an MRI tube (thankfully, I am NOT claustrophobic!) to have a full spine scan to see if this vile disease has spread. I won’t get the answer to that question until next week. 

Okay, now for some brighter news. I am no longer AWOL, nor do I have the covers pulled over my head, and the pity party is over. I’ve had an attitude adjustment from a fellow terminal cancer traveler. Four simple words from her gave me a new perspective. “What if it works?” That’s what I’m hanging onto now. What if it works? That’s my new mantra!