Accepting the new me
Some days it’s easy, I AM alive and suffer very few side effects considering what I have been through the past 3.5 years and how it could be. I see what other cancer fighters go through and there is nothing easy about it. So, I do consider myself lucky. Some days it’s very difficult I HAVE brain cancer, it sucks, it's scary and it really is surreal. Unfortunately, there are more days it’s just like Uhhhhh. When people ask how are you?? More times than I wish I just say I’m OK and no matter what I will always keep my smile on unless it is that bad and I cannot deny what I am feeling. I wish I could say I feel great! I am back to my old self!! But that is for most people in any situation...If we could all, always be great wouldn't that be great! :) While you may not be feeling 100% great....also understand what it COULD be like. Someone out there ALWAYS has it worse. It could be way worse and I know that so no matter what I am grateful and appreciate every single day.
The phrase never judge a book by its cover is so true. I may look like I feel great but just because I laugh a lot, doesn't mean my life is easy. Just because I have a smile on my face doesn't mean something isn't bothering me. I just choose not to dwell on the negatives, keep my head up, and move on with my life. It’s sure easier to pretend I am feeling great than to face reality I want to cry, am so stressed or anxious or just want to go home and sleep, not be around a lot of people and have to explain to someone that has no idea how I am feeling. I many times am tired, still have chronic back pain, trying to find ways to feel better and more "normal". Each week I try to up my THC dosage but even some days 1 extra drop will turn my day into an anxious scare because I am unsure what is really happening. I have moments of deja vu, complete exhaustion, gazing off in confusion, overwhelming thoughts, fear, pains and anxiety... all signs of seizures. These feelings take over my body and mind...and then I wonder is it another seizure....or what is it.... something worse!? Then you rewind the day....Did I drink too much caffeine, not enough water, did the extra dose of thc make me feel off, did I take a different supplement, why am I so tired today? Why do I feel like this? The left side of my head hurts but my tumor is on the right...did the tumor spread to the left side of my brain?? My smile sometimes looks crooked... Am I having a stroke??? I was getting really bad jaw pain last month and have come to realize it comes from stress....Stress is horrible and finding ways to control it is something I have been really trying to figure out. A small thought or something going on in my head can trigger stress and make me feel like I am losing my mind!! This Monday I am trying a new therapy called Craniosacral therapy and am very excited!! I will post more details of this next week once I try it!
Then my mind goes back to thinking......Why am I having these random vivid episodes that I know really didn’t happen? Sometimes I have thoughts and visions of things that happened YEARS ago...I mean like 10-20 years ago!!! Now I’m anxious.... I’m drifting into what feels like it could be so many things....why? Because it is ALL in my head...literally!!!!! Every single day we are fighting a war inside our head. No wonder I am exhausted some days. It’s frustrating, irritating, scary and surreal. Is this a seizure coming on? Do I need to rest? Is my blood sugar too low? Is my tumor back and slowly giving me signs it is?? Is this just post treatment feelings. Am I having PTSD? AHHHHHH. Nope..I guess just a normal day for someone with a brain tumor and I am getting there on accepting this is my new life. So finding ways to deal with stress and anxiety is SOOO important!!!
I am blessed and alive why do I want to cry? Or some days it just happens...I've left the gym and just burst into tears...no clue why. I just want to feel normal. What is normal?! What happened today that is different from yesterday?? Am I stressed more today? Did I skip a meal? It’s only 3pm I have so much I want to do....OMG I can’t...I’m feeling off so I will just rest and hope to feel better later. Then I get down because I feel like I wasted a day. The mind is so powerful, so scary and so unknown. A day in the life of a person with a brain tumor is so scary and can really make you question soooooo much at times you feel like you are going crazy and losing your mind...like for real!!! The past few days I have just felt OFF, out of it, tired and I don’t know why. I also have been so busy, stressed and overworking my body. It can be so many things but all I can do is keep on keeping on, never give up, never give in and stay positive everything is ok and will be ok!!!! My recent MRI on July 1st came back stable which is great!!! So now I can remain somewhat stress free until the next one which is the beginning of October and will be at UCLA. I will also meet with a neurology specialist to try and figure out what is happening in there. I do not want to take any more meds or up my dose of Keppra which is the only pharma drug I am on. I want to get to the root cause of WHY this is happening. It could be just overdoing it and stressing WAY to much....which I am sure and hope it is. That is fixable....this is my new life....and I am accepting it.
A day in the life....it requires so much strength, will power and determination to get up, do what you gotta do and stay smiling and as positive as possible!!! I know many will relate to this post and that is why I decided to write it. I never look for sympathy or to make anyone sad but only to help spread the awareness of what the inside of our smiles sometimes really mean. When we have good days it is amazing! When we don’t it is depressing and sad but we don't want you to know. So here is what we continue to do.....TODAY we fight, TOMORROW we fight and NEVER EVER give up or give in!!! We are alive! Accept this new life and know that WE GOT THIS!!!!!!!!! If you or someone you know is battling a brain tumor remember these things and don’t get annoyed, angry or frustrated with this person. It is not their fault and trust me we do not mean to be this way and we are trying our best.
Whenever I feel doubt I find time to meditate, breathe and listen to positive affirmations...Here is one I love and suggest by Jason Stephenson https://youtu.be/ZssjZnsN4Gg