So this New Year’s Eve was hard. I felt alone in that most people are excited to start 2025 and have positive goals and I found myself fighting depression and the fact that I start the year with a boatload of medical appointments and the fact that I will be on treatment for the next 4-6 months. It’s a hard pill to swallow, literally. Yesterday, I had my first appointment at the UCSF Brain Tumor Center and I feel really good and hopeful about starting my care there. I really like my neuro oncologist and the view from the waiting room was breathtaking (and they had coffee and snacks!) When you spend most of your days at medical appointments these are the things that bring a little light to your life. Also, unexpectedly, I had to get a baseline head MRI before treatment so they can track if the targeted therapy is shrinking the tumor or not. I have new insurance so I felt excited to go to a new facility with a new head MRI machine (it took less time- yay!). When I was done, I felt this all too familiar dread of waiting for results. I get so pissed that I am just not numb to the process of waiting for my results. Even though I know the tumor is there and most likely grew I still have fear they will find something else wrong or something that would prevent me from taking the oral chemo. I decided that I am not going to read the results and wait to hear from my oncologist. I also realize that those feelings around scans will never numb down which is sooooo frustrating! You would think the more you do something the less scary it will be but in the case of brain tumors this is just not true.
It looks like I should start the targeted therapy (BRAF MEK inhibitors) by the end of this week which I am looking forward to. I have been having pressure headaches, vertigo, mood swings and other symptoms from the tumor every day so I just want it to stop. I really am trying to stay positive but there is something about going into your third battle with disease that takes some of your fight away. I like to think the tumor is causing me to feel this way (which historically it does when it is there). I know that this is not the true me and I just can't wait to feel like myself again.
Having your mind aka command center taken from you over and over again is very traumatic and very few people can relate. It is super lonely going through this but I am thankful for the family and friends I have that support me. I pray that this terrible tumor goes away once and for all and I also pray that more funding goes to brain tumor research because it truly is one of the most awful things for a person and their family to go through. I know it is not easy to read this stuff and it is difficult for me to be this transparent but it made me think of this quote by Agatha Christie - “The truth, however ugly in itself, is always curious and beautiful to seekers after it.”
