We're Not Just Standard

I love this man, this doctor, Patrick Soon-Shiong. Granted, I don't really know anything about him other than this video, but I love what he's doing. I love his brain. I love his basic statement of question your treatment. Question the standard. Don't just do what your doctor tells you, ask questions. Double check the research. Is that a lot of work? Of course it is, but what is the price of your life? You deserve the best. You deserve to live. When you get diagnosed with cancer it's overwhelming, and exhausting, and everything happens at once, but things level out (usually), you just have to push through and give all of your energy to figuring out the best path - then maintain. It seems crazy to have to research what your doctors are recommending, but man is it worth it. Doctors often have different opinions about dosing, about treatments, about what is best. Also, in my experience, and in talking with cancer friends, they downplay short and long term side effects. Anyway, I'd better hop off my soapbox or you'll end up being turned off of the video and that would be a serious tragedy. This man is incredibly exciting. I am so grateful for private cancer businesses. Heaven forbid we have to rely on the government to save us; we all know how bogged down it is.

You guys, cancer is a multi-billion dollar industry. What we don't realize is that we're customers, that we can drive demand. We have power if we start speaking up with our pocket books. Yes there's the issue of insurance, and that makes it tricky, but this is and isn't about money. It's intrinsically intertwined, but it's more than that. We have to stand up and get off the assembly line, and analyze the big picture. If we're going to endure treatments, and everything that goes with cancer, let's make sure it's going to work. Let's make sure it's cutting edge, that it's the best. One of the worst words, one that gives me a visceral reaction, is "standard". Who ever wants to be "standard" in any area of life. I don't. Don't settle for it either. (Click the image for the video or click HERE.)

Out Living

Oh I have been laughing at myself. Me and my big book. Me talking about my fancy new brain. The second I started typing about my progress, Doubt started creeping in. He's such a jerk, that Doubt. I'm macabre in nature, and can not help but wonder if this next MRI in October will prove to be the one where Hermie shows back up. Life is too good. It's going so well. When Doubt spoke up, I literally laughed out loud. The irony of life. You never know when your luck will end. All I can do is enjoy each day, seek out the big books, strive to be happy, push boundaries.

This past weekend Dan and I went camping in north central Washington. We brought friends, new and old. My cell phone quickly drained as we drove closer, and as I unplugged from the rest of the world, my vision became clearer, the sunshine brighter, the river much more blue. I took deep breaths, inhaling the dry wind. I allowed the breeze to ribbon around my neck, sparking private smiles. I'm not much for camping; I'm a girl somewhat tethered to electricity, to amenities. But, man, did I enjoy myself. I swam and swam, lap after lap, in the river. I goofed off with the kids. I sneaked away to read my books. I went to bed early with the sun, and rose with the quail as the sky pinkened. I slept hard, hard on the hard ground. I have bruises on my hips, battle scars. I look at them with pride. It reminds me that this is my year of challenges, of getting out of my comfort zone. The bruises remind me that I'm alive, that I'm out there living.

Where did the girls go!?

Dan caught us snoozing

Our campfire smoke made it a bit hazy, but what a gorgeous spot!

On another note, I've been meaning to mention that for the first time the FDA has approved a pharmaceutical CBD to treat glioblastoma. (Remember my post on CBD for brain tumors and seizures?) The drug was given "orphan drug status", here's the press release, or you can read it below. This is fantastic validation for CBD advocates! The FDA had already granted "orphan drug status" to the same pharmaceutical company, Insys Therapeutics, for two rare forms of epilepsy (Dravet Syndrome and Lennox-Gastaut Syndrome). Boy do I love it that I live in a state that makes it easier to procure, and use medical marijuana. Even though CBD isn't psychoactive, you still have to have a license to grow marijuana, even if it's industrial hemp (which still hasn't passed in the House). We're getting closer, though, to allowing us cancer fighters to do what we have to do to survive. This is our life, our future, our bodies. Ultimately, we should be the ones making the decisions, not the government. We're a unique crew, and should have flexibility, even carte blanche.