Last week I had my 30 day check up to see how my body was tolerating the BRAF MEK inhibitors (targeted therapy) and it looks like all my blood tests and EKG/ECHO were good. This means I can continue on the meds! I am in a weird place of not knowing if my symptoms are side effects of the medication or if it is my brain tumor growing. The pressure headaches have been debilitating and triggering (this has been a symptom of growth) but it also is a common symptom of the oral chemo. Other than that I have bouts of periodic fatigue (similar to rheumatoid arthritis), vision issues (it’s hard for me to read on the computer so apologies for typos but no blur spots so that’s good!) and some minor skin irritation. The schedule is very hard! 6AM is 2 pills and nothing to eat/drink for an hour (I have to wait an hour to have coffee…terrible). Stop eating/drinking at 2PM, 3 pills at 4:30PM and then no eating/drinking until at least 5:30PM. I mourn my free will.
I recently saw a UCSF neuro ophthalmologist and found I have some atrophy of my optic nerves and it is not reversible and can lead to vision loss. Surprisingly, I passed all my vision tests! As long as the tumor doesn’t keep growing and stretching my optic nerves they should remain stable but just one more thing to add to my long list of problems.
One month after my second surgery, it started growing again and giving me problems as it is stuck to my pituitary gland, optic chiasm, and hypothalamus. They apparently call this the prime real estate of the brain.
My MRI to see if the targeted therapy is working is February 28th. I randomly read an article this morning that all the planets will align on this day. I want to think that it is a good sign. I am really anxious about this scan and don’t know how you prepare yourself for such a thing. I want this treatment to work more than anything. It’s hard to be hopeful when you have had so many bad scans. It still feels unreal how this all went down. So many devastating blows from thinking I had a simple cyst and brain surgery to now I am being treated at cancer centers and am on the third recurrence. When I am in the waiting area it feels like I don’t belong there, like someone will come tell me I am in the wrong part of the hospital. When I am not at appointments I am pretty good at ignoring the magnitude of it but when I am in the hospital it hits me so hard. I am sure there will come a time where I can digest everything but right now I am in survival mode. I believe in the power of prayer so please pray for me and my family. It’s been hard on them too, especially Trevor. I do envision a day when I am free from all of this and walk away without any brain damage. I am on the beach in Hawaii with all the people I love looking back on this thinking what a wild ride that was.
