UCLA MRI Results: Surgery Needed

I finally received my secondary results from the MRI. Unfortunately, UCLA believes there has been interval progression, and they are recommending brain surgery. I don't know if I could stomach a fourth surgery, but before I can commit to that anyway, I've requested a f-DOPA pet scan to verify that it is indeed tumor growth. F-DOPA pet scans can differentiate between tumor cells vs scar tissue or inflammation.

It's confusing to hear conflicting results from two different centers, but that's nothing new for me. At this point, I'm waiting for insurance to approve the scan. Next, we'll schedule the scan, and then we will review the results to see if we are dealing with a recurrence. Between now and then, we scramble for alternative plans for survival. I know that sounds alarmist, but I say it with tongue in cheek.

As always, I'll keep you abreast. (That word always makes me laugh, so I had to throw it in there.)

PS It's my brother's birthday today, so if you see him, please don't say anything until tomorrow! xo

Carrageenan Conspiracy

This is random, but I'm really excited so I have to share. To begin, I have to preface that I am addicted to ceremonial grade matcha green tea (it's shade grown green tea leaves ground or milled into a fine powder). I drink a glass or two, or three each day. It's known as one of the most powerful anti-cancer compounds, and it is my crack. No kidding, when I started drinking it regularly, about a month or two ago, Dan was like, "What's the deal, you are even goofier than normal. And your energy is insane." I told him my secret, and he laughed. But laugh all you want folks, it's the most amazing mood booster I've ever had. Sure, caffeine gives you energy, but a boatload of antioxidants mixed with just a little caffeine (it's a natural byproduct of the green tea) is the way to go. Hence the matcha. A good ceremonial grade matcha smells like grass, and has a vibrant green color, and as you drink it you know you're giving your body exactly what it wants.

Now, Dan can't stand the taste, and I admit I don't love it, but I have been making it with a few dashes of hot nut milk which creates a luxurious flavor and texture. I had been using unsweetened almond milk, but then I remembered that carrageenan, which is in the majority of nut milks (among other products), is really bad for you. Like really, really bad. Cancer causing bad. So, I just pulled up a couple of notes on carrageenan as a teaser (hopefully it'll open your eyes if you weren't already familiar)....

"Carrageenan predictably causes inflammation, which can lead to ulcerations and bleeding," explains veteran carrageenan researcher Joanne Tobacman, MD, associate professor of clinical medicine at the University of Illinois School of Medicine at Chicago. She says the food ingredient irritates by activating an immune response that dials up inflammation. Her previous work showed a concerning connection between carrageenan and gastrointestinal cancer in lab animals, and she's involved with ongoing research funded through the National Institutes of Health that is investigating carrageenan's effect on ulcerative colitis and other diseases like diabetes. (Prevention Magazine)

That's the crazy thing, inflammation feeds cancer. Inflammation feeds disease. And what I find the most disconcerting is that our government knows that carrageenan is cancer causing, and cancer promoting, and they don't limit its' use. Or ban it. There is all kinds of research being done at the National Institute of Health, which is a US government organization, proving the dangers of carrageenan. They know it's bad. They know it's a killer, and yet our government doesn't protect us.  

I have learned the hard way that I have to be responsible for my own health. That no one is going to fix my cancer, that no one person has the answers or ability to heal me, but I can be an advocate for myself. I can read the fine lines and hold myself accountable. I can not expect our government to protect me. It is my responsibility to investigate what is good and what is right for me and my body. And that is what led me to create my own nut milk yesterday. And holy cow it is delicious! And it's easier than you think.

Ingredients 
1 c raw cashews
4 c filtered water
1/8 tsp sea salt
dash of vanilla extract (to taste or omit)

1. Soak the cashews overnight or at least for 4 hours
2. Rinse the cashews
3. Toss the cashews, two cups of filtered water, the salt and vanilla (if you chose to add it) into a quality blender (I use a vitamix) 
4. Turn the blender on to low and slowly increase speed. Blend until it's nice and frothy, and thick. At this point you can add part of the final two cups of water, or all of it. I like my milk to be thick and creamy, similar to whole milk or cream. If you're more into 1% or fat free milk, add in all four cups. Blend it in nice and good, then pour it into a sealable container for the fridge. Note: The milk will further thicken once in the fridge.

I love this nut milk because, unlike almond milk, you don't have to strain anything, or remove anything. You're using the whole nut, you don't remove the fiber. The entire recipe is so easy it's ridiculous! 

Although in 1972, the U.S. Food and Drug Administration considered restricting dietary carrageenan to an average molecular weight > 100,000, this resolution did not prevail, and no subsequent regulation has restricted use. Because of the acknowledged carcinogenic properties of degraded carrageenan in animal models and the cancer-promoting effects of undegraded carrageenan in experimental models, the widespread use of carrageenan in the Western diet should be reconsidered. (US Library of Medicine National Institutes of Health)

I'm not trying to preach, I just wanted to share because I'm fearful about what's happening to our bodies, and I care about you and I care about people in general. It's amazing how important it is to read the ingredients in our foods. It's especially important to research ingredients if we don't recognize them. I mean, what the hell are we eating these days?!? We're eating non-foods. We're eating chemicals, and it can't be good for us. It's not natural, but it's hidden in our natural foods - like almond milks. People think that they're helping their bodies by choosing a healthy milk alternative, but who knows, perhaps with the carrageenan the nut milk is just as detrimental as hormone filled cow's milk. I'm digressing, just ignore my little rant. I rant because I'm frustrated that there are non-foods allowed in our food supply that cause and promote cancer. It's a bunch of crap. But don't take it from me, you can make your own decision on what you think. Regardless about whether or not you agree with me, just play around in the kitchen and try this delicious recipe. I really think you'll like it. :)

Green Lake Gump

Great news. It looks like my oncologist's nurse is going to send over the necessary medical records to UCLA next week for application into the clinical trial. Wooo hoo! Somehow I feel like I'll need to follow up on that, but that's fine. As long as it gets done.

On another note, I would like to share an amazing herb that fights malignant gliomas (and ulcerative colitis, inflammatory bowel disease, asthma, arthritic, crohn's disease, breast cancer, and leukemia). I probably sound like a crazy advertisement, but I love sharing things that help! It's incredibly exciting because it's non-toxic, even in crazy high doses like 1,000 mg/kg. I've even found a study where rats were implanted with gliomas, then they fed them the boswellic acid at 120 mg/kg three times a day at eight hour increments. By day 14 the glioma had shrunk by 60%. SERIOUSLY. This boswellic acid lowers inflammation which is the environment that cancers thrive in. It's amazing! I'm very hopeful that I can get the same results. Here are a few links for my brain tumor fighters...

Boswellic acids and malignant glioma: induction of apoptosis but no modulation of drug sensitivity.

Boswellic acids inhibit glioma growth: a new treatment option?





The best part about the whole thing is that the company that makes the best quality is just a mile and a half from my house. I just jogged over there to pick up another bottle. AWESOME. This little Green Lake Gump runs all over her neighborhood to literally run her errands. It's so much fun. Choosing to avoid driving (by now it's legal for me to drive again after my seizure) has forced me to get out, get sweaty, get stinky, and gain perspective. I feel empowered.

Final High Dose Day (First Round)

I got a little nervous yesterday morning, fearful of a seizure, so I started with a 3-3-3 (butyrate, artemether, and piperine) instead of the 4-4-4. I took the pills at around 9:45 am and then I grabbed the necessities, a tall glass of water, the cordless telephone (in case of emergency), pre-seizure pill (just to be safe), several books, Emma and Mr Bingie for cuddling. The morning was quite uneventful, though. I quarantined myself in bed until 12:30 pm when I was starving and had to head down for some breakfast.

Since the side effects were nil, I decided last night to do 4-4-4. No effect, and this morning I took another 4-4-4. Tonight is the last pill set, and from then on I'm just going to focus on my diet, and exercise. I need to read up on anti-inflammatory foods. My biggest focus is on reducing inflammation so that the MRI scan shows as clearly as possible.

I'm excited about this MRI but, of course, I'm a bit nervous. My body feels wonderful, I have more energy than I've had in ages, my skin is clear, I've lost around 18 lbs (I had packed on some weight after the seizures). When I originally checked in for brain surgery in April of 2010, I weighed 151. I now weigh 141. The great part is that I still have fat on my body. I honestly didn't know that I had THAT much body fat. It has been pretty eye opening. I still wear the same clothing size, but everything fits better. That's nice. You'd think that the fat-loss of this diet would be the best part, but it's not. The most exciting part of these past several weeks has been the way that I feel. I am healthy and alive. It's miraculous.

On a side note, I had a crazy dream last night. I have a habit of having those. I dreamt that I was in a remote area down around the Mississippi sound, somewhere in south Louisiana. I was in a house on a hill, overlooking lush green trees and the beautiful water. Danny was working on an oil rig in the bay, which I could see from the living room window. On my hip was my friend Jenny's three and half year old daughter. All of a sudden, from the south east I noticed a funnel cloud over the water. I remember saying, "Look Bailey, see that funnel cloud?" I glanced over my shoulder, and when I looked back there were three, one headed directly for our house. I ran to the next room and ushered her into the bathtub with my mother. With nowhere else to hide, I returned to the living room and scrambled under a table, taking a deep breath. I was aware the tornado/hurricane, would be crashing down immediately. I took another deep breath and closed my eyes as I heard the crashing of glass all around me. I felt my body levitate in air and I sensed that I had been caught up in the whirlwind. My biggest concern was the impalement of some sort of foreign object, but I understood it was out of my hands. I didn't panic, I just hoped that everyone in my life knew that I love them all dearly. I remember the whooshing of the wind, and the centripetal force. I hoped I would survive, but I knew I had to acquiesce to the forces around me. The next thing I realized, I was waking up surrounded by debris. The sky above was a crisp blue, and I was completely uninjured. I dug around to find my mother, Bailey, and my father, and they were all unharmed. I hopped in a car (my college car, Buttercup, a 1979 diesel which I've long since sold) to head down to the waterfront to find Danny. As I was driving, people were walking, looking for people, some were crying, others were in shock. Then I woke up.