Oct 13, 2013

Degrees of Separation

Sunday morning homework completed...


So here's a cool story. Absolutely random. I received an email Friday night from one of my closest friends. The subject line was, "Amazing" and the body of the email contained only a link. Confused, pretty sure it had to be pictures of kittens or something random that would make me smile, I clicked.

As I was reading the blog post (some time into it), I realized they were talking about me. Woah! I'm not used to reading about myself, I'm used to doing the writing. I was so humbled, and blown away. Robyn, the author, is such an engaging writer. The whole story, especially when reading it from her perspective, is truly amazing, just like Libbey said.



I remember the first time I experienced how small the world truly is. It was in the summer of 1997; I was an exchange student in Costa Rica. My friend Talia (another exchange student from Irvine, CA), and I were walking down the steps at the San Jose mall when we crossed a woman coming up the steps. Talia and the woman locked eyes and got very excited, they started laughing and giggling, looking around in disbelief. It turned out she was the mother of a Talia's schoolmate. Unbelievable. The world is so small at times, and yet at others so incredibly immense.

People come in and out of our lives and we have the ability to learn so much from each interaction, each situation. I love the fact that the brain tumor world is very small, but beyond even our group there is a great divide. There are those who (for whatever the reason) are solely following standard of care, and there are those who are searching outside the box for the cure that we've been told doesn't exist. Living outside the box is definitely exhausting, it's a mighty journey, a treasure hunt. The reward is so great, though, that once you start looking you can't stop yourself from making it your life's work. It consumes you.

I love my other treasure hunters, and I appreciate them so very much! I learn from you, I feel connected to you, I want you to win, I want us to conquer, and make it to the mountain top. There is no way I could manage this ongoing battle without all of the help. You brain tumor/cancer fighters are very smart, very hard working, and all along you've been having fingers, tools, devices, chemicals, and radiation in your grey matter. You impresses me to no end. Unlike other cancers/issues, our troubles are in our brains. Kinda important territory when trying to read/research/comprehend/remember.

On another note, found out today I'm losing my health insurance (Costco's small business health insurance). Apparently, the whole system I'm in is becoming defunct because of Obamacare. I thought we would be able to keep our health insurance if we liked it? What the heck?! It looks like I'll be moved over to Medicare. Hopefully I get to keep Dr Liau, she really has been my saving grace.

Oct 7, 2013

Wait, whaaaat?

I've heard the saying, red sky in morning sailors take warning, but I had no idea that red sky at night meant delight. Cause.....


...I have no tumor!!!! It was scar tissue and inflammation. Hey-oooooooo. Also, we are pushing my MRIs out to every four months.

Although Dr Liau was very busy she helped us go through my pathology (apparently IDH1 mutation does have a better prognosis). She was positive about what I'm doing, and definitely on board with the Accutane, since it works amazingly with the IDH1 mutation. She worked on a clinical trial with Accutane and glioma patients a decade or so ago and it was considered a failure. But in 2008 scientists recognized the IDH1 mutation and when retrospective research was done, they realized that those in the trial with the IDH1 mutation way outlived their peers. I can't wait to start taking it! Liau said lots of those from the original trial are still alive! Yay for looking into my pathology. Yay for having targeted treatment. I am so lucky!!

We're currently waiting for Dr Cloughsey. I can't wait to meet him and talk to him at depth about my genetics/pathology, and what things could work as backup plans in the future if Hermie crawls out of hibernation. (Of course, I'm also really excited to talk more about the Accutane trial results and details.)

Danny and I can not believe the good news, especially since I woke up with my right eye dropping, eek! I hate it when that happens. It makes me feel like my face is melting.

What a relief. I can't even absorb the good news! I'll be pinching myself the rest of the day. Tonight will be a delicious meal with a full bodied red wine, then I'm back to the protocol. Gotta celebrate :) 

Good God I am such a lucky girl!!!! Wow.

Wow.



Double wow.



Phew.