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June 2013

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Blasting Ketones

Best day EVER (on Seyfried’s plan). Because I got my Newcastle Disease Virus shot on Wednesday, and flew home that evening, I decided to start a basic fast to use the weakness of my tumor cells against them. When you implement a caloric restriction it weakens cancer cells, because they don’t get enough food. It makes them tired and cranky, and weak, and it makes it hard for them to repair themselves. So my plan was to stay within the ketogenic principals, and drink lots of water, and eat as little possible for the days after the shot to potentiate the effects of the NDV. So yesterday I ate 270 calories, and today I only ate 282. I’m not strong enough to endure a water-only fast, so this is the next best thing for me.  In the past few weeks I have been hovering in the 80-90 range for my fasting glucose (boooo). I’ve been so stressed about the pathology and all things tumor related that I have been seeing a massive physiological response. Since starting my fast I have remained between 55-65 and today I had my highest ketone reading of 5.1. YESSSSS!!  Staying in Seyried’s range is incredibly hard for me. I wish I was better at it, and I continue to try, but I am a food eater, and it’s hard to eat a big meal and keep your blood glucose down. Tiny meals seem to be best, but coming as a burrito eating contest winner, it is hard for me to always be hungry.  Anyway, I’m excited to think that I’m helping kill the tumor with my diet. 5.1 is thrilling! I can’t wait to see what I get tomorrow.

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Jiggity Jig

Today has been fabulous. Stephanie and I shared lunch at a quaint little farm-to-table spot (delicious!), then she joined me for Dr C’s appointment. The trip has been calm, seamless, and I feel really pleased, excited even. It’s nice to feel capable, to shrug off my fears (of traveling anyway).  Here is the absolutely adorable, 13 days before her due date, Stephanie. (We missed you John!) Seriously. She’s just the cutest! I’m at JFK now, and although my flight is delayed, I will be home soon. 

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Bird’s View

Good old “airplane mode” allowed this fun pic of Central Park and Times Square. I made it! Hey-oooo. I might have eaten almost all of my snacks, but I feel great. I’m still taxiing in the plane (yep, I’m one of those annoying people), but will be in the car shortly, then in my bed right after that. This is aw-e-some.

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Solo NYC Trip

Tomorrow I fly out for New York for my newcastle disease virus shot. And this time, I’m going on my own!! Woop woop!! I’m so excited, and nervous. This is going to be the first time that I’ve flown by myself since I was diagnosed (as far as I can remember). It is very important for me to continue to evolve and handle more and more things. I have lived in such fear, for so long, of seizures. I’ll wear my medical bracelet, and I’ll take all of the necessary precautions, so I know I’ll be fine. I can’t wait to take back some of my independence! I have appreciated all of the help from friends with my travels, you have all been very, very supportive. But I am gaining strength each day, gaining confidence, and it is very liberating. Although I’m still a worry-wart, I’m getting better and better about slowing down, destressing, taking deep breaths, and my favorite – cracking jokes. I freak out here and there, but I can also laugh myself back into happiness 🙂 I feel that I have to take educated risks (a solo NYC trip) in order to believe in myself. Never give up. Never live stagnantly. It has been baby steps to get me to this point, and it’s thrilling. So I’ll fly out tomorrow, and on Wednesday Steph will join me at the hotel for lunch and we’ll walk over to Dr C’s office. She’ll join me at the appointment, then we’ll hug and I’ll be off to the airport. This is going to be an adventure. I feel excited like the night before I left home for college. This is the most independent I have been in years, and I am really digging it. Fingers crossed all goes well 🙂…

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Bad Path (No Pun Intended)

Well shit. I don’t normally swear on the blog, but yesterday evening I received a packet from Lindsey, my strategist with Take The Fight, with all of my UCLA medical records. After three attempts, we finally have the records that were originally requested two months ago. Getting medical records can be such a freaking headache. (Thank God for Lindsey!) So yesterday evening, Danny and I dove into the records and read every single page. It was terrifying. It’s never good to read, “Comment: The degree of cellularity and Ki67 labeling are worrisome.” Or the other comment that the tumor is “highly vascular” which means there’s a lot of blood flow to the tumor which is how it gets food to grow. This morning I have been trying to redact my medical number from the pathology report and cytogenics report so that I can post them online, but I’m having trouble. After rereading both reports I decided to pull up my original reports from my first tumor resection to compare my Ki-67 and p53 percentages and both numbers have increased greatly. This sucks. This means that the tumor cells are proliferating much faster, and the tumor is much denser (as I understand it). Just when I’m feeling better from the surgery, and starting to gain confidence, I’m hit with a massive blow. I feel sick about it. I couldn’t sleep until 2:00 am this morning, and my blood glucose is up into the 80’s. It might seem crazy to some that I’m reviewing over this stuff, and I do have to say that I wish I didn’t know the facts, that I wish I was still ignorant, but it is so important for me to look at the exact DNA and abnormalities of my tumor so that I can target my…

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Deserving?

It was recommended by a friend to remove the pages from Cancer as a Metabolic Disease off of the blog. Instead of posting the pages, please email me if you would like me to email them to you. I’m happy to share, but I do have to be careful so that I don’t get in trouble or fined. Good old copyrights. I understand the concept of business, however, I feel strongly that grossly profiteering off of cancer is very ugly. Of course, that’s just the world we live in, though. Not that my goofy little blog would fall onto the radar of the copyright police – but of course, I never thought I would get a brain tumor either. Now, it’s not that Prof Seyfried is taking advantage of cancer patients, I just wish that people didn’t have to pay $120 for a book to help save their life (blame it on the publishing company?). The information in that book is not out there in the world – you truly need the book in order to understand and follow the protocol. Of course, you don’t need the entire text, most of it is discussing cancer metabolism and various research that is much more in depth than any cancer patient ever would need. But there are a few incredibly valuable chapters that all cancer patients deserve to have access to. Deserve is a very strong word, I realize, and really, does anyone “deserve” to have anything? Clearly you know my bias, and that’s enough of that. So, leave your email address in the comments area and let me know if you’d like the information. As an aside, I do feel it’s important to point out how grateful I am for prof Seyfried’s work (as you know from other posts where I…

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Help With The RKD

Good morning! I have been bouncing around the state this past week. I stayed with my parents for several days, and hung out with a couple of my Wenatchee girl friends. Then Dan and I went camping. I even got the chance to see my handsome cousins.  Somewhere between the sunshine, the laughter, and the fresh air, I realized that I’m in a really great mental place. I have finally gotten into a nice routine with the RKD, and I’m happy in my social life. I feel healthy and strong, and most of all, relaxed. So, about that comment (thank you for posting that!) regarding the Restricted Ketogenic Diet. You are correct that 500-600 calories is the restricted calories for humans when compared to mice in RKD research. Also, the 500-600 calories are great to get into the therapeutic ranges of ketones and glucose for those who can not manage the water only fast for 48-72 hours. As for the caloric restrictions after reaching the therapuetic ranges, according to professor Thomas Seyfried’s book, Cancer as a Metabolic Disease, usually a 20% decrease of caloric intake will suffice to stop tumor growth. (I mean – come on – who can live on 600 calories for life? Not this girl.) To keep in the therapeutic ranges you have to check your blood glucose levels (Ideally 55-65), and blood ketone levels (Ideally 4-7). By watching those levels you will learn what you can eat or not eat, and how much – or how often. It has even helped me adjust my supplements (no more melatonin for me – it causes a massive spike in my morning fasting blood glucose level). I hope I don’t get in trouble for posting these scanned pages from my book, but I feel it necessary. professor Seyfriend’s book…

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Metamorphosis

The other day, I walked outside to see my caterpillar and look at this, he’s turning into a cocoon. How cool is that!! Seems like an odd spot, a door jam, to pick, but I love it! At least I don’t have to worry about stepping on him anymore 🙂 Of all the places he could have nested, he picked our front door. Pretty cool.

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Dad

I am so fortunate to have my dad (and mom) as one of my best friends. Today, is his 67th birthday, and I am really lucky to get to spend time with him (and my beautiful mother). I always forget to take pictures with my parents because we get to talking, and laughing, and doing. But here we are, dad and I for his birthday… Isn’t he adorable?!? The cutest. He’s my buddy.

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Good Luck and New Birth

Sorry it’s been so long since I’ve posted, I’ve been – even more than usual – very busy with life, research, family, and endeavors. Between the madness, since Wednesday, I’ve noticed a new neighbor… Of course, because I’m the weird nature lover who likes to over analyze animal/insect messages, I had to Google the meaning of the caterpillar. The little guy is still hovering around our front door days later, no longer on the doormat (dangerous!), instead he has migrated to the door trim. I think I’m going to miss him when he moves out, I’ve really become accustomed to seeing the little guy. Borrowed from the internet… Caterpillars are associated with good luck and new birth. In the second stage of metamorphosis the caterpillar feeds to gain strength and build a foundation before the cocooning stage begins. This stage is when we give birth to new ideas and new creativity which hones the foundation to allow a new expression of life. The caterpillar represents new birth and new foundation and is a symbol of good luck in the early phase of new actions. Caterpillars usually signify a need for gentle and quiet approaches to our activities and endeavors. They can also signal a surprise or gift about to be offered to us, or that can be beneficial to our future if we take advantage of it. Caterpillars herald a time of good news, new birth, and creative inspiration, signaling a time to get ready to start a new project or initiate a new endeavors. The appearance of the caterpillar reminds us to be cautious in starting our new endeavors. We should protect and disguise them as much as possible as we pursue them. If we do so, we will see rapid growth and we will experience the birth of…

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