Cancer as a Metabolic Disease

I have been hounding UCLA for MRI results from my April 20th scan. (Apparently, Dr Liau has been out of town since Friday and will return on Thursday.) Just an hour ago I got a phone call from one of Dr Liau's colleagues letting me know that my MRI is being assessed tomorrow at the UCLA tumor board. That is where they decide if they're going to recommend radiation. Yikes. Although I will opt out of radiation regardless of what they recommend (at least I believe I will), it would definitely scare me if they think I am at a place in tumor growth that would warrant such a drastic treatment. Of course, radiation does not extend my life, and causes such irreversible damage, I feel it would be crazy for me to even entertain the thought. Although I don't have to be afraid of the damages of radiation at this point, I am terrified of what that recommendation would imply. I'm hoping to find out their recommendation (like watch and wait or perhaps even extend my MRIs to six months or worst case scenario - radiation & chemo) either Thursday or Friday. If I have to wait until next week I don't know what I will do.

As an aside, Dan and I had a blast camping and although I didn't eat too poorly, I did jump out of ketosis. It was totally worth it though - we had a blast and even enjoyed some of my mom's delicious cookies. To jump start my ketosis, I started a water fast last night. I'm excited about it, and feel great. It will only last a couple of days, and I'll rest and continue researching in the meantime. Water fasting is incredibly healthy for your body. I've been researching and emailing the ever gracious Dr Thomas Seyfried with questions about his research and book, Cancer as a Metabolic Disease: On the Origin, Management, and Prevention of Cancer, and that's what has turned me into a true believer. If you have brain cancer, you truly must buy this book and learn about real research that will effect and extend your life. It's truly amazing. It's very expensive, over $100, but it's a literal text book that will not leave you hanging. It is so detailed. And, I didn't understand figure 17.1 so I emailed Dr Seyfried and he clarified within a few hours. How cool is that!?! If you want to combat your brain cancer, to do whatever you can, there is no other place to start. The science is proven, time and time again, study after study - even replicated in humans (not just in mice).

From the research of Dr Thomas Seyfried, I have purchased a Precision Xtra Blood Glucose & Ketone Monitoring System. It will help me keep my blood glucose levels low (55-65) and my ketones stable (4.0) through monitoring, which will limit the food sources of my tumor. No more guessing. Monitoring my glucose and ketones is a natural step since I've already been recording, measuring, and limiting my foods. I'm excited to see how my supplements effect my blood glucose levels, also I've read lotions and bath soaps/shampoos can spike blood glucose. I can't wait to turn myself into a little lab rat!

To be clear, the restricted ketogenic diet is not enough to stop my cancer, however, it drastically slows tumor growth.

Day 4

Hi guys. I'm officially almost half way through my fast. Woo. Hoo. I do not know how people starve themselves, it feels so unnatural. I have had several questions about the research and efficacy of this fast/food restriction so I have decided to post the most informative research paper I've found. You don't have to understand the whole thing, skimming is almost just as good, either way I hope if you have questions or concerns this paper alleviates any doubt that I'm doing the healthiest thing for my body.

An added advantage to this ketogenic diet that I've been on for the past few weeks, and now the restricted style fast, is that I'm down to 142 lbs (starting point hovering between 150-155). I don't care so much about the weight loss so much as the realization that as each pound of fat evaporates from my body I am eliminating Hermie's pantry. Bwahaahaha!! So awesome! I have had much excitement in the tumor bed, and my right arm and hand are actively going in and out of sensation (mostly out). My right side is very much in tune with my tumor so any activity excites me. It's also scary because it could mean bad things, like growth, but I'm copying research, so it should only be positive results. I'm trying to tell myself that anyway :) I'm depriving myself of glucose and that's exciting! We know Hermie can't eat ketones, so that's a great start.

Anyway, there is so much about this concept, like checking blood glucose and blood ketone levels, etc., but I'm not going to go into it all. Hopefully this paper is helpful. This is definitely tough, but I want Hermie out of my body. I don't want to manage my life and just slow Hermie down. I want to live healthily, prosper, laugh and travel and have a day when my family can come together at a holiday or special occasion and actually be able to celebrate, to no longer have the black cloud hovering over all of us. Hermie's black cloud is ever present, and I'm sick of him. I try to remain positive, but living with a ticking death clock is very stressful. I want him gone.

Seyfried Et Al., TSO

Over A Decade Later

How fun is this, one of my college roommates was in town for work and we were able to meet up for a dinner. So fun! We hadn't seen each other for 11 years. Isn't she just the cutest!?!? Christel and Ashley joined us. It was hilarious, and fun, and I was again reminded of how lucky I am to have such a wonderful life :)

Yep. Those definitely ARE Texas shaped sunglasses.

Thank you for all of the uplifting comments on the blog, and the helpful hints! I should clarify a few things...

1. The majority of my days are on the restricted ketogenic diet. I have lost about six pounds because of it. Some days, on the weekends or if I'm just in the mood to eat more, I eat the generic ketogenic diet. It's very important to restrict my calories in order for the ketogenic diet to starve my brain tumor or alleviate my seizure problem, but in order for me to stay on the diet I have to allow myself days when I can eat as much ketogenic friendly foods as I want. That way I don't feel deprived. I have been in ketosis for almost two weeks now. I have not cheated, nor have I wanted to. Not yet anyway :). I keep my carbs lower than 20 grams per day. If you want more information, as Scott commented, check out Dr Thomas Seyfried one of the foremost researchers on the ketogenic diet, brain cancer, and seizures (along with other diseases).

2. I have been taking lion's mane mushroom (H. erinaceus) supplements in order to boost my t-cell growth and macrophages which together increase your body's ability to fight cancer. However, thank you for the anonymous comment lion's mane stimulating nerve growth factor (NGF), and the subsequent effect on tumor growth. That caused me to research further and learned some frightening things. The great thing about supplements is that there are many options to increase my immune system, and after further research I will not be taking the lion's mane mushroom. Thank you for the help!

I appreciate any and all suggestions/information. Sometimes it's hard for me to sift through things, but eventually I make it through. Research sends me on a billion tangents and when people share their research/resources it gives me a better direction. Thanks!!

And thanks again for the support, for encouraging me to believe. Your help and love are what keeps me energized. Without all of my friends, my family, the readers of the blog and my adorable husband, I would long have fallen into a deep depression. So thank you. From the deepest part of my heart, I appreciate you all!