Sep 7, 2012

Post NYC Report








My college roommate Jess. It had been 10 years!! So much has changed, yet she's still the sweet, sassy girl that I have so many incredible memories with. Aaaah, the ridiculousness of college. We shared a lifetime of laughter :)

Mom getting the hang of things





The appointment went incredibly well. I highly respect Dr NYC. He seems to be the perfect fit. He reviewed my entire case, and was able to recommend a few more supplements (printing out research proving the effectiveness against gliomas/astrocytomas). I shared my plan with Dr NYC, and we discussed pros and cons of my options. Ultimately, we mutually decided that the best course of action is for me to do the clinical trial, and continue on all of my supplements. Dr NYC and I will be in contact, and I will end up heading to see him again after the brain surgery, once I am healthy enough to travel.

After my appointment with Dr NYC, I immediately emailed Dr Liau to see if we could schedule the brain surgery. She responded within a couple of hours, and I now have the surgery on the books. My brain surgery will happen on October 18th, at UCLA. I'll need to travel little over a week in advance in order to complete all of the necessary testing, and I'll need to stay in LA for two weeks after the brain surgery to make sure that I'm healthy enough to travel. All-in-all it looks like I will be in Los Angeles for a month. Thank you to everyone who helped with the cherry fundraiser, for all of the donations, and the Crystal Seas Kayaking fundraiser. The money is going to be incredibly helpful! We're looking for a rental in LA close to UCLA so that my parents can stay there, then I can recover for a few weeks. Dan will be flying in every weekend to be with me....eeek....this is really happening!!!

As a final note, the most influential statement from Dr NYC was that he recommended the clinical trial since the results are so remarkable. He says that there's a chance that if I do the clinical trial, I may never need any further treatment ever again. It's not probable, but it's possible! The trial is still pending, and we won't know the results for years, but that's the point, patients are exponentially outlasting their "termination dates" - my words not his. There is a very good chance that even if it doesn't cure me, I wouldn't need treatment for years, and years, and years. This could be HUGE.

I'm terrified, and excited, and exhaaaaausted. So I think I will go nap. Love to you all! And thank you for always supporting me. Life changes so quickly around these parts, but one constant is the love from my friends, and my family. Thank you.

Sep 3, 2012

Kayaking

My first bus ride since the attack. I'm on a roll!!

Wandering around lower Queen Anne on my way to a girls only kayak trip

Hunting for harbor seals

Just after a paddle whack to Julia's face. It was an accident, I swear!

J & J conquer Lake Union

I'm so glad I'm stubborn! I just have to get my frustration level high enough to get moving. Yesterday, I hopped on a bus, meandered down through lower Queen Anne, and met my buddy Jules down at Lake Union for some kayaking. I have become sick of living in fear of seizures or panic attacks. Now that I've gotten myself running again, and can easily hit the grocery store by myself, I have become much more confident and I'm pushing boundaries that I haven't pushed in months. I've decided to get out and have as much fun as I can before the brain surgery. Jules and I even made a mental summer bucket list of fun activities to do. I'm so happy to be out doing things, conquering my fears, and laughing, enjoying the world around me. Life just keeps getting better and better!! :)

To Do (in no particular order):
Hike Mount Si
Rent bikes and explore the Burke Gilman Trail
Stand up paddle board around Lake Union
Rent one of the electric boats on Lake Union with a group of friends to watch the sunset

We'd better get to work! :)