When I met with my neuro oncologist hours after the MRI last Friday, I immediately picked up a feeling that this appointment was different. His body language, the fact he didn’t tell me the MRI looked good immediately, and just a feeling something was off. I actually thought I must have missed him, saying it looked good, but as the appointment went on and he was very interested in how I was feeling, I had that familiar sinking feeling. I heard Trevor let out a deep breath and I knew he felt it too. Prior to this I had a very strange feeling all morning that I couldn’t shake - I now know my body knows things before I do. I’ll be honest, this all still feels not real and impossible even after 3+ years.
My worst fear when stopping targeted therapy was having an MRI that showed the tumor was growing slightly but not robust enough to say yes, it’s rapidly growing and yet here I am with that scenario. I hate that my fears are always exposed. I won’t know until my next MRI at the end of October (historically the tumor has been aggressive so I mostly likely won’t wait that long) but the odds are high that it is growing again. I wanted so badly to believe this was a cure or at the very least I would be off treatment for one year. There is a very small chance it is just a hormonal fluctuation making it slightly larger but there is also a bigger chance it is growing again. At times I am weirdly calm and feel so alive and blessed and at other times I feel I have the wind knocked out of me knowing I have a terrible super rare chronic brain tumor disease that we can’t get under control. It always feels like the second I find balance the rug is pulled out from under me. Top doctors tell me that there is no rule book for my case because it involves so much rarity, it’s really unknown territory. I was offered the option to start BRAF MEK targeted therapy immediately or wait and I feel like it is an impossible decision. I have to closely monitor my symptoms like headaches (which I have been having) and eye sight with my eye chart at home. I hate that it is my brain under constant attack and I wish it was any other part of my body.
I get waves of sadness because I don’t feel like I can move forward because I am constantly fighting for my life. I feel pressure that every medical decision I make determines my health and longevity. I feel stuck in this with no way out and my only option is to try my hardest to make the best of it but also knowing the treatment and tumor make me feel sick majority of the time. I have such big dreams for myself and thought I would be so much more than a person battling a terrible disease. I still fight not to let go of my dreams and the hope that one day I will look back on this. I am blessed to have a partner that grieves with me but then our conversations always lead back to that we are so lucky to have our family and each other and then we list all the blessings we do have. I will never stop praying and asking for healing because despite all of this happening, my faith is solid and ironically it grows stronger as things get harder. Like many times before, we appreciate all of you that have supported us and followed me along on this roller coaster. I don’t want you to feel sorry for me, I want you to be inspired by my journey and to understand how precious health and life truly are. Book that trip, take that chance, never give up hope