Friday, June 28, 2013

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.

Wednesday, June 26, 2013

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. 

Tuesday, June 25, 2013

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.

Monday, June 24, 2013

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 :) And, if I have a seizure it won't be the end of the world. People have them all the time and they're fine. I'll bet I don't have one, but if I do oh well. I can do this.

Thursday, June 20, 2013

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 treatments. It is terrifying to see that my tumor is becoming hungrier and thicker and a faster eater. "Slow down!", I want to say. "Chew your food 27 times before swallowing!"

I'm terrified and sad. That's just how life is, though. Ups and downs. Just when things are looking up (or you think they are), you get surprised and you have to change direction, work harder, or try to find a new solution to a problem.

Looking at the entire path & cyto reports make me really see the problems in my DNA, and its' inability to repair itself. This shiz is serious.

On a happier note, my house is swirling with the scent of peonies. Aunt Anne brought them from her garden. I have to say that the flowers are exactly what I need right now. Instead of crying, my throat will get tight, then I'll stick my nose in the peonies and take a big sniff. Thank God I don't have allergies.

Check out the Emma photo bomb :)

Ever since the second surgery I have felt like I wasn't going to beat this. I go in and out of trying to believe, of trying to de-stress, problem solve, and survive, but I can't seem to shake the uncanny feeling that this will be the death of me. Maybe I just need more treatments in my protocol, maybe I just don't know enough to be confident or that I just haven't researched how to fix some of my tumor's problems, but it all feels like such a long shot at this point. Not that I'm giving up - so far I just don't have it in me to give up - but I hate being so shaken, so unsure. It's not good for my soul.

Wednesday, June 19, 2013


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 have raved about him), but I feel it's reasonable to admire and respect a person, but still be frustrated about a system (publishing monopolies & exorbitant pricing).

As for me, I'm off for a walk around the lake with my Aunt Anne. It's been almost two years! That's about the same time it had been since I had seen my cousins (different side of the family). This past and current week have been all about reuniting with family, and it is amazing!! A few weeks ago I told Danny that I'm feeling so much better that I've decided to say, "yes" to more opportunities with friends (and family). I want to live my life, not in fear, but in the true spirit of adventure and love. I want to love and laugh and explore (hence all the camping). It's working out gloriously! I feel like life just keeps getting better and better. PS Courtney, Kaal, Isla & TW, you're next! We're coming for you. Auntie Jess & Uncle Dan will be there in a couple of weeks...let the shenanigans begin!

Tuesday, June 18, 2013

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 is priced over $100. I feel strongly that cancer patients should get a discount. I mean, come on, the book is a textbook for students. Anyone with cancer that is researching and trying to save their life, or the life of a loved one, shouldn't have to pay the full retail price, you know there's a wholesale price. Textbooks are such a racket anyway. Just my opinion.

The first page is about the 500-600 calorie issue. Please forgive my unprofessional scanning job, and less than easy to read posting of the images.You might want to use the zoom and print the pages out in order to read them. In fact, please print them because I may get asked to take them down. You might need to select a section directly off of the blog post - not from clicking the images - and print the selection, and in the properties before you hit okay, mess with the zoom. Each computer is different. I still think you should pay the money to buy the book. We can't wait for discounts, or freebees. We just don't have time.


Perhaps a bit egotistically, I feel a little like Robin Hood sharing those pages. I feel pretty passionate about the RKD and I want the information accessible to everyone. So enjoy!

Tuesday, June 11, 2013


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.

Monday, June 10, 2013


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.

Saturday, June 8, 2013

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 a new foundation.

Caterpillars can also indicate obstacles within our path. They may even indicate that a person or persons are blocking our growth or serve as a reminder that we must look at things and people around us realistically at this time. Failure to do so will slow down our progress.

And caterpillar also reminds us that new growth cannot occur unless the old is shed as the caterpillar grows quickly and must replace its skills with some caterpillars shedding their skins every few days to make room for a bigger body. A caterpillar showing up may indicate that we are refusing to shed the old that we have outgrown. (Andrews, 1999)

Tuesday, June 4, 2013

Ketogenic Basics & Recipe

Best breakfast ever, if you're on the restricted ketogenic diet...

1 egg
1/4 c kale
1 Tbsp butter 
0.2 oz goat Brie cheese
1 small clove of garlic 
Pinch turmeric
Pinch cayanne 
Fresh ground pepper

Turn on the oven to 325. Take a ramekin and add the butter. Put it in the oven to melt. While the butter is melting, shred the kale and measure. Slice the garlic and set aside (as a topping). Pull out the ramekin. Add the shredded kale and crack the egg on top. Spice with turmeric & cayanne & cracked pepper. Add the goat cheese and place the ramekin back into the oven for about 10 minutes (less if you want it runny, more if you like it hard). Once out of the oven sprinkle with slices garlic.

Nutrition Info (200 calories)
18g Fat
8g Protein
3g Carbohydrate 

Ratio: 6 : 2.6 : 1

As you'll note, I'm not eating a perfect keto ratio (4 : 1 : 1) at every meal. I don't really care though, it's still keeping my glucose and ketone levels in the Seyfried zones so I feel good about it. Life is too short, and too stressful to be all measure-y and what not. It was delicious, and easy. I mean, whatever it takes to stay in ketosis, right?

I started reading up on why not to eat a restricted ketogenic diet last night and I couldn't find jack, or jimmy for that matter. I did it because I started to doubt the theory. Instead of finding anything negative, it reestablished my drive to continue. There definitely needs to be a caloric restriction though. If you don't limit your protein the tumor will still grow. Excess protein converts into glucose. It's important to only eat about 1g protein to each kilo of your body weight (for the RKD). To find out your body weight in kilos take your body weight (135 lbs), and divide it by 2.2 (135/2.2=61.36). So, I should only eat about 61 grams of protein a day. Nice and simple. As for carbs, I should stay below 20 grams (20g is a general rule for all). I am able to eat the rest of my calories from fat. I track everything that I eat with MyFitnessPal (an app for the phone and better yet on the desktop - on the desktop you can change the perameters of your fat/protein/carbs). My restricted calorie amount is 1290 (a 75% decrease from my daily metabolic rate).

Anyway, not that anyone really cares, but I just wanted to talk that out in case other brain tumor fighters were curious. 

Hope you're all having a fabulous day. I'm off to plant my cucumbers.

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