Monday, August 25, 2014

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.








3 comments:

  1. I love and anticipate your updates. Thank you, as always, for being you! You are priceless!!
    Love, Maleka

    ReplyDelete
  2. amazing your free from growth for 2 years! although i have never heard of the ki67 score, presumably its something done at pathology that isn't done here?

    ReplyDelete
  3. Thanks Ben! I feel very lucky. Very miracle-y. Not all labs/hospitals do the Ki67 score. It's the proliferation rate of the tumor cells. Some studies say it's indicative of survival rates, but other studies disagree. Ultimately not the most important marker. Practically just a scare tactic.

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