The Most Poignant Riddle

Good morning. Been resting up from my worcation. I went to my parent's house to sleep, and meditate, and watch trashy Bravo TV (we don't have television anymore), but I got trapped in the vortex of the tumor world. Researching to make sure that you're living right, is much more satisfying than any other pastime. The tricky part is that my brain gets fatigued pretty quickly, and by Saturday it was fried. That morning Dan and I drove to the senior center where Grams lives. We brought her some goodies, and pushed her around outside. As we were driving home I had a mental lapse, I literally couldn't remember where I lived. Weird. It took several minutes for me to remember the image of our home. My mental Rolodex flipped from house to house, city to city, and finally I figured it out, but it was scary. Several moments of dementia. I don't know if it was a seizure thing - it didn't feel the same - or just lightheadedness from the CR, or worse yet, tumor growth? It scared Dan. It scared me.

I'm chalking it up to mental exhaustion. No need to panic. The MRI is near, and results will be available next week. We will know what's going on in my brain (to a certain extent) soon enough. I kind of don't want to know what's going on in there. I'd rather just keep going along with my current path. If the tumor is growing again, I don't know what my next step will be. There are a few promising clinical trials out there, and some positive off-label drugs I could add. I know that if the tumor is growing the next recommendation is radiation. I also know that as an IDH1 mutant glioma fighter, radiation is said to be more effective. That's new information that has recently been coming out in the research, anyway. It's a double edged sword because it's always great to have more treatment options, but at the same time I really, really, really don't want to do radiation. So, we'll see how it goes.

In the meantime, after last week's research, I've decided to go raw vegan for a bit. It's mostly veggies and some fruit. I realize that there are all kinds of diets out there for cancer, and brain tumors; the RKD, vegan, vegetarian, Paleo, caloric restricted, macrobiotic, you can do the Gerson therapy, or do the alkaline diet, and you can find someone who has survived from each one, even survivors who have never changed their diet and still live on SAD. It's kind of a crapshoot. There is no surefire diet to stop brain cancer, or any other cancer for that matter. These molecular aberrations will not respond to the same diet, nor the same treatments. Cancer may be the most poignant riddle of all time. But with that being said, there are direct correlations between elements of diet and tumor growth. It has been proven. For example, IGF-1 in animal protein, artificial sweeteners, sugar (of all kinds), artificial dyes, nitrites & nitrates, MSG, just to name a few. So what do you do? Do what feels right. We are all walking this walk together, but at the same time we have to use our own legs. I love learning from you guys, and I appreciate you sharing your knowledge and wisdom. I wouldn't be as far as I am without your help. When I share things, I don't expect you to jump on my bandwagon, I just want to give you the chance to check stuff out and see if it helps your situation. The IGF-1 issue in animal protein was definitely a game changer in our household. Thank you for all of the comments over the past several posts, the dialog was exciting, and very instrumental for Dan and I to adjust our lifestyle.

In one of the comments there was a mention of a couple of documentaries, the most profound being (in my opinion), Eat, Fast, Live Longer. If you enjoy nutritional documentaries, or just want to get your mind blown, please check it out below. (If you have any problems viewing it CLICK HERE.)


Eat, Fast & Live Longer HD by limoslight

Thanks again for all of the continued help as I navigate this curious journey, I can't measurably express my gratitude. There is such power in numbers.

Blinded By The Fashionable Ketones

I've been swimming in the interweb waves all day. I'm gathering, learning, relearning, trying to absorb, planning.

Things I know:

• You can not completely eliminate glutamate/glutamine from your diet...it's in every once living thing (except lard & most oils)
• Your body can create glutamine/glutamate when it wants it (thanks muscles and other less obvious trickery)
• You can eliminate glucose from your diet, but your body will just create it anyway (muscles save the day yet again)
• Limiting glucose and glutamine/glutamate is ideal for slowing tumor growth, but when hungry, a vegetable which may increase circulating glucose is better than eating a bit of meat (only because I'm IDH1 positive - the glutamine eater)

See, I knew, I had heard, I had read, I had discussed the fact that protein is a growth factor for all cancer. But I got bogged down with the whole ketogenic trend specific to brain tumors. I thought, perhaps we were bred differently. That we were special. That ketones were the key. I'm not saying the ketogenic diet doesn't help slow brain tumors, but from the research I've read it has to be calorically restricted. In its natural state the diet does not slow tumor growth (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1819381/figure/F2). But in my mind, I figured, if I could do the restricted ketogenic diet (allegedly the ketones themselves fight tumor cells if you get a high enough blood serum level) at least most of the time, it would be better to reduce the glucose, and protein (not realizing it was specifically glutamine/glutamate I needed to focus on) with the RKD than be a vegetarian or even do Paleo. The problem continuously surfaced, though, that I would putter out of energy. And when that happened, instead of reaching for a vegetable (carbs kick you out of ketosis) I would reach for protein like peanut butter or a hard boiled egg. Exactly the wrong snacks for low grade IDH mutant brain tumors. I was essentially handing Herman a big ole glob of glutamine.

It's crazy, I remember a phone call with my nutritionist where she emphasized that my green smoothies (which are all vegetable save an avocado & lemon) turn directly into sugar in my body; that without protein with each meal and snack, I was killing myself. Not her words, but still. She was emphatic about the huge sugar spike that would surge through my veins, therefore feeding the tumor. IE: Killing myself. Same same. It put the fear of Hermie in me, driving home the whole protein must be included to survive mantra. Remember all the times I've written about feeling guilty about my apples? That was because of my nutritionist. As was my deviation from my green smoothies. It leaves you feeling crazy. Who's right? What do I do? Am I just supposed to pick the lesser of two evils? Glucose spike over protein consumption? Girl still gotta eat.

Things I know:

• Known unbiased tumor fighter = caloric restriction (click for a great study on the benefits). It doesn't seem to matter if you eat the calories from protein, fat, or carb, just be sure to take your BMR and cut it by 30% (some say 20% others 40%). That's the surefire way to hypnotize the giant. It won't stop him, but it'll sedate him, and maybe during that time we'll find just the right cocktail to kill him. It's also the thing I always forget. Or maybe I just don't want to deprive myself so I black it out from time to time. :)
• Healthy fats like omega-3's (fish oil) continue to be a great way to supplement my diet. One of the least burdensome of the food groups, in regard to the glucose/glutamine issue. However, not that palatable as a snack. Just sayin'.

Reviewing over my notes, it's clear about the caloric restriction, but I'm also wondering if perhaps soduim phenylbutyrate & metformin could really work together, like hit it out of the park, for IDH mutant tumors (along with all my other goodies, of course - my newest motto is never take away, only add). I know I repeat myself a lot, but it takes a lot of hammering things into my brain, and even then details and concepts, the most obvious of stuff, often slips away. I wish I could just blame it on the tumor, but I think the more you use your brain the more you have to make space. Happens to all of us.

Am I more scared about this MRI than usual? Maybe. It's the turning point that we hit and had tumor growth after the first brain surgery, so technically, this is when Herman should show back up. Not to mention the fact that the proliferation rate of this tumor was faster than the first. If they see tumor I won't be surprised, only disappointed. If they don't see tumor I will consider it a miracle. It's not that I'm pessimistic necessarily, I just don't take this no-visible-tumor stuff for granted. I don't assume that all of these treatments "have" to work. There have been so many that have gone before me that have given everything they had, and still, it wasn't enough, they were taken. I know that life is a gift, and although I'm scared, more than scared actually, with every exhale of breath I remind myself that I just enjoyed a luxury.

Time for lunch...