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.

We Are Strong Beyond Measure

I can feel it in my bones; I've turned a new leaf. I am no longer fighting this role I've inherited on Earth, this brain tumor life. I am whole heartedly embracing it. I'm enthralled with the research, the supplements, the current treatments, the treatments down the line. I am happy to eat my veggies, and down fish, flax seed, and coconut oil. I'm thriving on clove after clove of garlic and pill after pill. 

I can't believe medical professionals - educated people - said I wouldn't walk or run or read again after my hematoma. Here I am, I'm thriving. My brain is so happy it wants to kiss me. I just went down to the lake to take a break from all of the cancer research, and my light reading is on quantum physics. And I love it. It makes sense. It excites me, and challenges me, and makes me giddy. Who would have thought? Clearly not the doctors. 

The brain is miraculous, and if you treat it with kindness, feeding it the right foods, exercising it with new stimuli and challenge it, it will sprout new cells, and new connections will be made. I can't believe that I'm one of the lucky ones where my diet and lifestyle and perseverance is working to heal my damaged brain. Depending on the damage, I'm sure it doesn't work for everyone. That's the thing about life, there aren't any guarantees. All you can do is give it your best shot. And never give up. And when miracles happen along the way, whether they may be small or large, celebrate your fortune.

It has taken 4.5 years to recover from the hematoma and hardening of my duramater. It almost killed me, but it didn't. Some people like to say, "What doesn't kill you makes you stronger." I hate that saying. I think I was always this strong, just as strong as I needed to be to get to where I am today. I didn't need a disaster, a diagnosis, to make me into a new person. It was always in me. I think that's true with all people. Some may just need to dig a little, but it's there. We're all infinitely capable. We're strong beyond measure. We just have to believe in ourselves. 

Acceptable Growth Deemed Stable

Sorry it's been a long time since I've posted, I just don't have enough time in the day to do it all! But things are fabulous. Dan and I keep noticing amazing gains in my brain. It's profound, and exciting, and it makes me feel like I'm getting smarter and smarter and ready to take on the world. Even my energy levels are increasing! My comprehension is shattering old levels. I feel like I'm finally at a point where I'm as smart as I was before all of my brain surgeries, before that hematoma seriously damaged my brain. Dan's pretty sure I'm almost there as well. Maybe he's hesitant because he has an inflated view of my smarts back in the day. Works as a compliment in my world. But man, it feels really good to "get" things. My level of research is compounding; things are coming together. There are so many ways to kill brain tumor cells, and it's thrilling!

I haven't just been researching, and such, I also had one of my best friends from college come stay with us for a weekend. Then just a few days ago some of our NYC buddies came through on their annual NW stay. Talk about refreshing. I am so lucky to have such wonderful people in my life! This is exactly what life is about, isn't it? Friendship, family, love, connection. Considering I could have died during the aftermath of my first brain surgery with that hematoma debacle, then a year later when I had that grand mal seizure while driving highway 2, I'm incredibly lucky to be alive. There isn't a day I don't think about how lucky I am to be here!

Have you guys read Grain Brain? You know I love to read, and I get really excited to share. Even with that being said, it's rare that I start soliciting people to read a book. But, this is one of those times. The book, Grain Brain will change the way you look at food, and the way you look at your brain. It pulls together all of my various research and finally makes sense of everything I've read. I'm on my third read just to solidify everything. This is a book for everyone, not just tumor fighters, by the way. It's profound, and if you let it, it will change your life.

Yesterday I met with the most beautiful young woman: body, soul, spirit. She was recently diagnosed with a brain tumor so we met and talked about stuff (along with her mother, and her buddy, and later her buddy's husband). To prepare, I went back through some of my radiation reports. It's always good going back through stuff because you catch things. You won't believe what I found out. I'm going to break it down:

4/27/10 total complete resection (they got it all out)

10/12/10 small hyperintense area found per my medical records - ie: tumor (yet the doctors are telling me no tumor)

1/14/11 mild enhancement of nodular area according to my medical records (yet the doctors are telling me no tumor)

4/15/11 Radiation oncology nurse tells me I'm stable - no tumor, then the doctor comes in and tells me I've had tumor dating back to 10/10. They recommend radiation. I decline.

I look into other options. I try various supplements and other alternative treatments.

10/25/11 tumor has grown to 11 x 10 x 16 mm according to medical records

I try extreme diets and various supplements.

1/13/12 tumor shrinks to 11 x 9 x 16 mm, possibly accountable to scanning techniques
4/19/12 tumor measured at 11 x 10 x 16 mm according to medical records (hence tumor remains unchanged for six months)

To avoid radiation, I look into clinical trials across the country. I find Dr Linda Liau at UCLA and get an appointment.

7/12 I meet with Dr Liau
10/18/12 I have my second tumor resection - a total complete resection (she got it all out). I don't make it into her clinical trial, so I opt for private treatments (think $$$$).

After reviewing the subsequent radiology reports dating back to 10/18/12, according to my medical records, I have not had a new tumor mass grow. That is almost two years. The fact that the tumor has not grown back is a miracle. It's a miracle derived from my newcastle disease virus shots, my chlorotoxin, and my excessive various supplements. The pathology from my second tumor showed that it was more aggressive, with a higher Ki67 score, so technically, my tumor should have shown up at minimum three months after the surgery. So thank you body! Thank you Dr Liau. Thank you fate, and chance, and hope, and good fortune. And god? Whatever it is that seems to be working, thank you. I couldn't do what I'm doing without all of the help from my researcher friends, and the doctors, and specialists that respond to my ignorant emails looking for more information.

The reason why I shared a basic outline of my situation is because I wanted to illustrate the importance of getting your medical records, and at each appointment getting copies from the records department. Then file it for future use. Doctors have "acceptable" ranges of growth where they will call your tumor "stable" even if the tumor is growing. It's important to have transparency, and the only way to do that is to take charge on your own. I won't make that mistake again, and I want to share my story so that others don't waste precious time thinking they're healthy when a tumor is growing roots in your body.

Leaving you with a few fun pictures from our time with my college buddy Koontz. Had to take him to a Hawks preseason game, and take him sailing with The Mahars. All the sea life came out to say hi to the Texan: porpoises, gray whales, a seal, and lots of huge jellyfish. It was pretty magical.