Yesterday was July 21st, exactly 19 months and 4 days ago yesterday, I had a massive brain tumor removed from my noggin. 18.5 months ago I was told this tumor is one of the fastest growing and statistically the most lethal form of brain cancer. 18.5 months ago I read statistic after statistic saying that there is over a 90% chance that I will not make it another 18 months; I wasn’t too sure I would see 29. A GBM is the prototypical cancer you think of when hearing about someone being perfectly fine one day and dead less than a year later.
Living with this cancer is not easy, it is always lingering in the back, or rather the front of my mind and it entirely shapes the way I live my life. From the second I wake up till the second I go to sleep I am always trying to figure out what I should and should not do. What has the potential to slow or stop the tumor in it’s tracks and what has the potential to make the little monster make an encore appearance? Why does my head hurt? Why do I have endless ‘floaters’ in my eyes now? Why do I get dizzy sometimes? Is insomnia normal? Is my vision really getting worse or am I paranoid? Why am I tired still? These mental issues are what I call the ‘other’ side effects. These side effects have no treatment options other than mental strength and blind faith.
The mental side of cancer is probably more brutal than the barbaric treatments I initially went though. In treatment I knew what the side effects were and I had a system in place to combat each and every one. Can’t eat or sleep? Smoke a little marijuana=eat a feast and sleep like a baby. Tired and no energy from radiation= yoga and exercise- problem solved. Headaches=motrin. Nausea=marijuana. There were answers for every symptom and nothing was untreatable, except that stupid metal taste! During treatment I knew I was doing all that I could to combat this nonsense now I sometimes feel as if I am grasping at air and hoping what I am doing will make an impact. This past MRI the mental side effects got a quite a bit more difficult.
I do not like talking about my MRI’s, and I rarely post before I have them because I like to pretend that I am always 100% confident that I know everything is going to come back stable (the only word I ever want to hear from my oncologist since he refuses to ever consider me in remission.) I know my timeline, I know that statistically I am now outside the norm- a statistical outlier. I am in a very small category now and that scares me. When I was first diagnosed I was so mentally tough that my heart rate barely inched past 65 when I would meet with my oncologist to go over my MRI results. In the beginning I was doing everything right; eating right, exercising, never drinking, and always positive no matter what news was sent my way. Having to stop treatment early didn’t even phase me. The further out I got from my surgery, the more lazy I became. I got lazy on my diet, I wouldn’t exercise or workout for sometimes a week or more at a time, my supplements and IV drips came and went in waves whenever I could afford them, and I went from drinking maybe once a month to sometimes once a week. I started getting more and more confident and I also started to forget exactly what it is I am up against. I stopped reading about other GBM fighters that I do not directly speak to because I did not want to categorize myself with them, when in fact we are all in the same boat. GBM’s are hard, really fucking hard. I was simply lying to myself to make my life easier.
This MRI I was reminded that I need to get back on the proper road. I talk to a few other GBM pioneers that are paving the road to a cure and I love all of them. Some of them are doing better than others, but we are all in this together. Reading updates from my fellow ‘blastormers’ put things back into perspective. Seeing these amazing fighters have recurrences was the push I needed. I forgot what I was up against and in my realisation came a sense of panic. What the hell was I doing the past 5 months? Certainly not what I should have been doing.
When I posted on FB and IG asking for prayers and positive vibes, it was honestly out of fear. This was the first MRI in a very long time that I had a decent amount of anxiety. I was getting headaches again and a couple other things that were reminiscent of my pre-surgery days. As it turns out, I am still stable!! All that stress was needed and much appreciated. It was the slap I needed to get me back on track. I am not a normal 29 year old, I am not healthy and I can not pretend like I am. I might look healthy from the outside, but I know what is lingering on the inside and to pretend like it is not there is just idiotic. Seeing all of the people who took the time to like, comment, text, call, message, e-mail, pigeon message, and smoke signal me over positive thoughts and prayers reminded me how many people I am living for now. I can not let myself get lazy, I feel as though I would be letting down so many people if I fail in defeating this nonsense. This is the motivation and the reminder I needed.
Seeing all the love and power behind all the amazing people who support and follow me makes the mental side effects much easier to deal with. I know that no matter what happens I will have a small army by my side ready to help if that time ever comes. Lets all hope we never have to cross that bridge.
As many of you know I try to travel somewhere after each stable MRI, this MRI was extra special because I have had a trip to Fiji planned to watch a friend get married for nearly a year now. I was kinda scared that I might not make it, but now I that I have renewed my lease for the next two months I get to go enjoy Fiji worry and stress free! This has been on my bucket list since the first time I saw pictures of the Fijian beaches. Excited is an understatement, but the first word that comes to mind.
Today my picture and quote are one in the same, click the image to read it all or take a drive to The CAMP in Costa Mesa. Actually go there anyways, you will enjoy it.