10 years, finally a win!
Like a huge win.
After ten years, 2 brain surgeries, parenting on hard mode, my tumor is stable and retreating.
I was diagnosed when my daughter was starting kindergarten. This year she started Freshman year of high school and over winter break I started Vorasidenib. We were at the point where we needed to do something. I was honestly scared to start but then they brought in who I now refer to as Dr. Mommy 😂 (never to her face) and she explained it to me in a way that made sense and had me actually excited to start. I think she works with the Vora patients but I just adore her, she’s the most compassionate and helpful person I’ve ever met in a medical setting.
My last two scans showed that it had stopped growing and they could show me and say for sure that it is slowly shrinking on the second scan I had on Friday. A bit more definition in my lil brain wrinkles and the space between the wrinkles around my tumor is much more spacious.
Dr. Mommy couldn’t hold back her excitement, she was thrilled to show me my results and followed me chatting all the way to check out and then she gave me the best hug.
My initial diagnosing surgeon said a lot of things. He warned my husband that it would be hard on our marriage, he was wrong, it’s brought us closer. He said I was addicted to exercise when I asked him when I could start running again, he was wrong, I have a really great relationship with exercise and play. He told me to avoid animal protein and I lost way too much weight which he chastised me about as well. He said a lot of things that turned out to be not right or true for me. But he also said to hold out 10 years, a new targeted treatment would come out. I didn’t believe him really but here we are.
A day short of a decade with brain cancer, and I’ve never felt so lucky in my life. I’m probably going to get to see more Springs, my daughter finish high school. I’m also switching AEDs from clobazam to lamictal and feeling so much more motivation and clarity even while I’m waiting to start tapering off clobazam, excited to see how I feel when I’m not sedated by a benzo all the time.
I am not wanting to count my chickens before they hatch- by my doctor told me to go get a pap smear and a lipid panel because we need to be sure I’m going to be around for awhile now that my brain is stable.