Oct 24, 2013

Franken Whaaat...

Only in Seattle. (Or, of course, Portland.)


Ok. So, first, the security (as expected), was much tougher at JFK than SEA. The doctor's note was definitely a huge help. They still opened all the liquids and held a strip over the liquid. Then they ran each strip through a machine verifying the innocuousness (if that's a word) of my liquids. All-in-all it was still seamless, which is such a relief! One less thing to worry about. I like that.

Second awesome thing, is that I met an amazing woman on my flight home. We got to talking, and it turns out her husband's buddy is fighting a GBM. I hate myself, sometimes - totally embarrassed - because I am such a talker. I swear that I've literally been working on talking less. It's basically a lifelong goal. Anyway, I was so excited to share a few (key pieces) of info. I know how it feels to be overwhelmed, so I told dear Rachel to feel free to share the info, but give a disclaimer so that the friends can toss it of they're already too overwhelmed.

For me, in my life, I will never be offended if people take my ideas and toss them. I'm not trying to prove a point, I just want to help. And the whole point of helping is to be an assistant. It has to be a choice, and above that - people have a lot going on. That's what sucks. Time is the most valuable, and we can't control it. We're only human. We only have so much energy, so many resources, and some of the cancers are evilly selfish, taking everything so quickly. 

Bottom line: I want to help. Take it or leave it. Take a penny, or leave a penny (by way of information to fight gliomas). I just want to learn more and share. 

Oct 23, 2013

Who's Quasi?

All I could think about, while riding to JFK, is how lucky I am to be able to travel and fly to fight for a cure. It always blows my mind how fortunate I am. I'm happy to live in a goofy little rental house, to be a one car family, to put everything on hold in our lives to prioritize and travel to get the best care possible (thanks Dan). With our sacrifices and the financial support from donations, I keep chugging along. 

At Dr C's office, I introduced myself to a few more cancer fighters (breast & brain). I shared some of my new research with the friend of the GBM fighter. I don't want to be pushy, but I like to offer the info in case they're interested. It's a fine line to walk, but I always feel like if I don't say something, I may be hindering their health and ultimately their survival. Not even the best researcher can find all the information, all of the studies, all the tricks, and all of the info. We need each other. I know I do, anyway. People continue to help me navigate my path, and it's amazing.  

At the appointment, it was quite a compliment when Dr C borrowed one of my studies to share with another patient. It makes me feel really happy to help! Because I don't have an actual job, or career, I find intrinsic ways to feel accomplished and satisfied. When I'm able to help others, though, that's when I really feel good. I'm kind of being selfish and self serving, because it's definitely not an altruistic thing - I get great joy. There is so much great information out there, and it only takes a few things, the right combination, to kick cancer's butt! I keep reading 20% went into remission and their tumor never came back, or 18% didn't have their tumor come back, always these things are because of just the right cocktail. That's all it takes! No one thing, not even the perfect combination works for everyone. There's always a small few who things do work for, though. You just have to be in the 20% or 18%, it can happen! If you try enough stuff (without hurting yourself - that's why it's so important to align yourself with great doctors), you will eventually find what works. The only tricky thing is time. Time is the real killer.

As I was leaving the office I ran into Pam, a wonderful woman who is helping her husband battle metastasized melanoma. We met back in October. It was wonderful seeing her and matching notes. She's so loving, and even though we were talking about serious stuff we were laughing, and smiling, it was so much fun! 

I did share my radiology report with Dr N & Dr C. Dr C had the best phrase for my Dopa PET test result, he called me, "Quasi-stable." It sounds good to me! I feel like the hunchback of Notre Dame. Wasn't his name Quasi? It's someone's name, was it someone on Star Wars? I can't remember.