Lots has been happening with me recently. And not a lot of it has been great. A couple weeks ago I had another seizure. This one was mild compared to my first one, but still scary. It started with a migraine aura and then I lost my ability to speak for about a minute. It landed me in the ER where I got a big ol’ shot of steroids and a CT scan. The CT scan came back clear so the doctors were a little dumbfounded as to why I had the seizure. ER sent me home and my Neurosurgeon scheduled me for a follow-up brain MRI.
The MRI revealed that I had at least 30 new brain tumors that had developed all over my brain. Keep in mind that just a couple of weeks prior my brain was deemed “clear as a bell” by my Radiation Oncologist. So these new spots were really a shock to everyone. It took me to a really dark place; almost as bad as when I was first diagnosed back in 2018. I mean how can these tumors develop so quickly? Is anything going to work? I honestly felt like this could be the end of the rope for me. Not a good feeling. I just cried. And prayed.
I do have a wonderful team of doctors, though. And my Radiation Oncologist said to me “If you’re not done fighting, neither are we.” So he, along with my Neurosurgeon and two Physicists, my Medical Oncologist and a full tumor board got to work on analyzing my scans and formulating a plan. It took a while and that was hard. I’m always desperate for information about what’s to come and waiting just about kills me. And during that time I started to have another seizure; I know what it feels like now when one is coming on. Luckily I had some steroids that got it under control fairly quickly. But I have to say, I am over these seizures. And my brain. And these damn tumors.
I finally got my plan this past Wednesday. They ultimately decided to do targeted radiation on 22 spots. They initially were going to just do 6 spots, particularly the one in my right frontal lobe that was the largest in size and the likely cause of the seizures. But they thought since they could get to that many spots its best to zap them now rather to wait for them to grow. There is also a spot in my brain stem that they are radiating. The brain stem is where your brain communicates to the rest of your body so I’m really freaked out about that one. According to my doctors mapping this radiation plan was extremely complicated. I expected no less from my brain.
I started the radiation yesterday; they did the upper half of my brain. I had the brain stem radiation today. I’ll have radiation to the lower half of my brain on Monday. I am getting far too used to that damn mask. But I feel like I will be tied to it for the rest of my life.
I will also be starting another new infusion treatment. Its a drug that was just FDA approved this summer. Because these brain tumors grew so quickly, Kadcyla was considered a failure. One more thing off the shelf. I’m not sure how many options are left but I know doctors and researchers are tirelessly working to find new drugs everyday. I just hope and pray that this new drug has more longevity than any previous ones I’ve been on. I’ll start the new drug next Wednesday.
So this is my 2020 so far. Brain tumors. I want a do-over.
I was watching Moana with the boys the other day and this song that the deceased grandmother sang to Moana really hit me. Again with the Disney movies making me cry. But I like the message.
I Am Moana (Song of the Ancestors)
I know a girl from an island
She stands apart from the crowd
She loves the sea and her people
She makes her whole family proud
Sometimes the world seems against you
The journey may leave a scar
But scars can heal and reveal just
Where you are
The people you love will change you
The things you have learned will guide you
And nothing on earth can silence
The quiet voice still inside you
And when that voice starts to whisper
Moana, you’ve come so far
Do you know who you are?
I am wife who loves my husband. I am a mother who loves my kids. I am a daughter who loves my parents. I am sister who loves my brother. I am a granddaughter who loves my grandparents. I am a girl who loves my family. I am a girl who loves my friends. I am a woman surrounded with love and prayers. And I am not a quitter.
I’ll keep y’all posted. ❤