I am so sorry this is a little late but I wanted to talk about my last day of radiation, which was Friday, October 16. Radiation is the only treatment that has been proven to work on ependymoma. After my original diagnosis of anaplastic ependymoma grade 3 in 2013, I went through 33 rounds of focal cranium radiation. This time I did 32 rounds of FULL cranium/ FULL spinal radiation. Almost 6 and a half weeks. And let me just tell you, those six and a half weeks were not easy. A lot of people don’t know what radiation is like so i’ll kind of explain. Every Monday through Friday I would wake up early and head to St.Jude. After checking in, I would go downstairs in the radiation center. When they call my name I go in the back and change into a hospital gown, then my Radiation Therapist would lead me into the treatment room. I lay down on the hard table, they make sure the red lazer light is lined up PERFECTLY with my 5 tiny tiny tiny tattoos. They put the tight mask on my face (pictured below), screw it to the table, and strap me down. They give me a warm blanket, play my music and leave the room to start treatment. The most important part is that I have to lay completely still. The big machine moves around my brain and I can hear a small buzz sound. The air smelt like burnt hair or burnt something. After about 20-30 minutes (somedays longer if they have to take pictures or reposition me) they come in and unscrew my mask, unstrap me, and help me out. I continue my day at St. Jude after that. The side effects hit me HARD. Focal radiation was tough, but full brain/spine radiation was way tougher on me. My first week of radiation I threw up everyday (that lasted everyday even still now) but it progressivley got worse as I got deeper into radiation. By my 3rd week i became weak, sick, tired.. lost my appetite. I have to say weeks 4-6 were the worst weeks of my life. I couldn’t walk or eat, I wasn’t in the mood to talk or even be awake. I was so sick I felt useless. I was so ready to give up..but I knew I couldn’t I had to keep pushing.. I want to BEAT this cancer. I lost at least 10 pounds just in week 5. My doctors wanted to put me impatient. But, we made a deal.. I would be on 24 Hour TPN, which is an IV bag of all the nutrients and proteins my body needs, but is not receiving. So I had to get a pic line put in- which is a line that goes through my arm in a vein straight to my heart. (yes I was awake for that and it was AWFUL). So I carry my IV bag in a backpack for 24 Hours everyday. My 2nd day of being on TPN I was a new person… I was walking, talking, smiling, even trying to eat. By my last day of radiation I felt so much better. I was so happy to be done with radiation, but at the same time terrified. You can only be radiated 2 times in your entire life, I have used up those 2 times. And like I said radiation is the only treatment that works for ependymoma.. so it terrifies me.. if it comes back again I can’t get treated. So thats why we PRAY this ugly ugly cancer NEVER comes back again.
SO NOW THE FUN STUFF:
On Friday after my last radiation, I was leaving the hospital when I saw Mr.Shadyac (CEO of Alsace), he is the Nicest man in the whole world. He asked me if I would go outside and welcome Justin Timberlake, Marc Gasol, and Mike Conley with him. I was like OF COURSE!!!! I was wearing my comfortable clothes because when I got dressed for the day I knew I was going to Nap after radiation.. not prepared to meet JT!!! Its totally okay Justin was SUCH a cool guy and they made my day/year/life. Thank you Mr.Shadyac!!! THEN on saturday I got some EXCITING news from Kelsea Ballerini, watch this video of her asking me to be her date at the CMA’s! https://www.youtube.com/watch?v=F8spKF3Twc4&feature=youtu.be
As of for how I am feeling and for whats going on right now: I am now only on TPN for 12 hours a day, I am feeling better but these radiation side effects will stick with me for a while and PEAK in 6-8 weeks. I have 4-6 weeks off until I start chemo.. and in that break I will be going to the CMA’s November 4 with Kelsea!! And I am going to try to travel and do everything I want to do before going through 4 months of hell. I just want to remind people, because many tend to forget.. yes I love meeting all these famous people and getting all of these big opportunities, but I would trade everything just to be healthy and normal like you.
But thank you for the Love and Support from many people.. it’s what keeps me going!!