This one is hard to write. I thought for sure with a 90+ percent shrinkage rate that this would be an exciting post and things would finally turn a corner but I learned again that brain tumors do not play by the rules. Life is unfair and brain tumors are the worst things ever imagined.
I needed time to digest my recent MRI results. I am all too used to the cycle of MRI—>gut punched with results —>cry a lot —>slowly pick myself back up. We have grown used to living in the state of shock where nothing feels real. Things keep moving so fast that we never really have time to digest or comprehend any of it.
I was devastated Friday when I received my results. Honestly, the last couple days I kept thinking I would wake up and this was all just a nightmare. The targeted therapy drugs that have a very high rate of success shrinking my tumor did not shrink mine. It’s actually highly unusual that it would not. My tumor is rare but it is becoming more obvious that it not only looks different than any other but now it is behaving differently. I feel lost, scared and defeated yet again.
I met with my neuro oncologist Monday and he is still hopeful. The fact it was the same size 2.6cm as January means the drugs are at least doing something. My tumor is insanely aggressive and grew back immediately after my second surgery and continued to grow at a super speed. I am going to stay on the targeted therapy for two more months and then see if it shrinks. If nothing happens then we’ll try a different combination of drugs and if that doesn’t work, start to look into clinical trials. Radiation and surgery are a last resort due to the critical area the tumor is.
Living with this thing in the center of my brain (it’s stuck to my hypothalamus, pituitary gland and stalk, and optic chiasm) has been brutal. Insane headaches, extreme vision problems, no control of my regulating system at times, personality changes, hypothalamic obesity, depression and fatigue are just some of my daily struggles. I know my true self is trapped deep inside and I can’t seem to get out as the tumor holds me down.
It’s very ironic that my worst fear was a brain tumor since I was young. Maybe our bodies intuitively know because I was constantly paranoid about having one. I think a lot of people fear them and rightfully so. They are the worst thing ever to exist. They attack and invade YOU, your personality and who you are. They create unimaginable suffering for not only you but also the people that love you. They don’t play by any rules and hide behind the blood brain barrier. They hide well and can only be detected by advanced imaging. It still baffles me that I get every test under the moon and all of them come back normal.
I’m feeling a little better today and will continue to wake up everyday and fight this tumor. I still envision the day that I will look back on all of this.
