Fear and Courage

Thank you all for being so kind to me and wishing me luck on Facebook, Instagram and Discord. The month from my last post has been difficult to respond to people and even hand everyone the latest message.

The last month has been difficult. On Dec 8th, my brain was opened for nearly the entire day while they worked on removing my tumor. As I understand it, I’m glioma level 3 and they were able to remove 95%. The remaining 5% is going to be taken away with six weeks of radiation therapy and possibly Chemotherapy. 

The last month has been very difficult to derive meaning from. The first couple days after getting home, I was very distracted and had problems understanding people and trying to figure out what I wanted. Curiously enough, I was incredibly hungry and was able to eat very well with Dad, girlfriend and my Brother taking turns taking care of me. The number of different drugs the doctor had prescripted me made the hours disappear. Even the hours spent chatting with my dad about incredible concepts now that a portion of my brain feels confused but also feels incredibly real and vivid. While I’ve often felt confused, I’ve also felt strangely awake and alert to a section of my brain that feels like it's firinging again in years. I didn’t realize how long my brain had been slowly undermining itself. I was under the impression that the company I enjoyed working for was requesting all of my effort. I would finish my work each day, order food to my house, play a game with my girlfriend and then be ready to go to sleep by 9pm. Once a week when I would work out at the gym, I’d feel completely exhausted and not have much else energy to do. It doesn’t sound all that difficult until I realise I'm 36 years old and suddenly everything had used my maximum capacity. It was as if I had slowly lost the ability to examine myself and create habits that would give me the capacity to grow. I found myself playing video games during the weekends nearly nonstop because living my life was just beginning to get too difficult. I assumed I was having a little bit of stress, it never dawned on me that I was having a problem with my brain. Quite a twist, huh? 

Since those first few, confusing and anxiety weeks, things have quite radically improved. It's been explained to me that the remaining 5% has to be dealt with six weeks of some radiation and some chemotherapy. The doctors have been incredibly helpful and I’ve sat in on video or in an appointment with so many different ones that I have some cautiously optimistic understanding of what these six weeks will be. I’ll be on enough medication that I shouldn’t get too sick (providing I’m not allergic) or put into a little more than a small amount of pain. Not just that, but Thursday’s I’ll have a Gym coach I can work with.

I’ve been watching a lot of videos on YouTube from people who had this same sickness. I was incredible at how honest they had all been. I’m also really blown away that it was back in 2016 when this process to treat people was made as the way to deal with it. Even young people used to be dieing fairly quickly when they found out they had this glioma issue. That was because the doctors didn’t know how to remove the glioma like they do now. Everyone whose channel I’ve found about the different magnitudes of glioma they had, they have all been able to survive perfectly normally after. No one in the last 3-4 years has had a recurring problem killing anyone in my position. With the way the people at UCSF have treated me I feel incredibly lucky. I started the six weeks of radiation and the medication on January 10th. Then after they plan on educating me to return my writing and speech back to normal. 

I’m not sure what to think about how long I’m going to live now. Not sure I will live a normal length of life and might have to pray for only a decade or two. I’ve heard some horror stories online about how some people live only five or more years at most. I’m also growing afraid that I’m going to hope that I’ll be able to make it several decades (minimum) with my Astrocytoma, IDH-mutant, CNS WHO grade 3 designation. Luckily I’ve also found a few people still alive after a decade by getting the same work done that I’m having done.  I’ll be able to figure this part out better as I meet with the doctors that have booked some time with me for the next few weeks. I’ll certainly let everyone know whatever I learn. Thank you guys so much.