Tuesday, November 5, 2013

An Un-Know It All

You know what encourages eating disorders more than else? Researching brain tumors. The more I know, the more I wish I didn't know. Here are some of the things that I've learned that continue, like a hamster wheel, through my brain:

1. If I eat vegetables without some protein or fat, my blood glucose will spike just like eating fruit or candy or other carb laden items. (According to my nutritionist.) So, even if I eat salads all day, my circulating blood glucose will be high, thus feeding the brain tumor.

2. Like with the veggies, if I eat a piece of fruit without a little protein and fat, my blood glucose will spike like I've eaten a candy or other carby food.

3. If I eat more than (approx - depending on your body size) 4 ounces of protein at once, the excess is converted into glucose thereby spiking my blood glucose. 

4. If my heart rate gets going too much, it spikes my blood glucose. (Which for me is anything above walking.)

5. There are carbs in supplements. When you're taking around a hundred pills a day, the supplements are a food group in and of themselves. So, do I skip vegetables so that I can take my pills? I can only have 20 g of carbs a day to stay in ketosis. My supplement plan is to keep my copper levels low, glucose low, to lower inflammation and so many other things. My nutritionist is trying to keep my body in a healthy homeostasis, creating an environment where cancer can not grow. Which is more important, pills or veggies? 

6. So, skip the whole supplement issue, and focus on the fact that if I eat more than 20 grams of carbs in a day (even if it's purely vegetable carbs - no breads or crackers), I will not be in ketosis. If I'm not in ketosis, my circulating blood glucose is high enough to be feeding the tumor. In order for me, personally, to be in ketosis and stop the growth of the tumor this is what I can eat in a day:

20 g Carb = 3.2 cups raw broccoli
63 g Protein = 2 chicken breasts (5.5 ounces each)
91 g Fat = 7.2 tablespoons of coconut oil

Clearly, the above daily diet is not very rounded, I'm just trying to make it easy to gain perspective, and understand the difficulty of the Restricted Ketogenic Diet, as Professor Seyfried recommends for brain tumor fighters.

Let's see...so, now that I know what I'm allowed to eat to be successful, it's just a job of staying on target. The problem, is that even though I know what I need to do to stop tumor growth, I also know, from experience, that it sucks. It's so regimented, there are so many rules, and it takes a lot of fun out of my life. I can no longer just enjoy an apple for the sake of its' beauty, and flavor, and crunch. Now I think about how the sweetness is surging through my body, how that body is pumping insulin to try and lower my blood sugar, that the sugar remaining in my veins is swimming up toward my brain, and into my resection area, that the invisible cancer cells (which the doctors have so thoroughly reminded me, still exist), are gorging on the sugar from that tartly delicious apple. They're getting fatter, and dividing into little cell babies. I can't un-know these things, and it is such a disappointment.

Here I am, in quasi-stable mode, feeling as if I'm teetering on the brink of success and failure. Every minute of every day I analyze, and assess my food choices, my exercise choices, my supplements - do I skip my pills for breakfast because I don't feel like eating? (I need to take most of my pills with food.) According to Seyfried, the less you eat (generally speaking), the less your blood glucose increases, the less you feed the tumor. So, basically, each time you skip a meal you're doing something right. In essence, you're being "healthy", but at the same time, it's just sanctioned anorexia.

It is crazy that I feel bad if I go for a jog, or if I do cardio, or lift weights, in the back of my mind I (always) know that I'm increasing my blood glucose, that I'm feeding tumor growth, that I am slowly killing myself. What is good for me is not the same for what's good for most. (According to research, anyway.) I'm in this weird world of trying to outsmart a brain tumor and it's strategic, and complicated, and usually counter intuitive. 

I wish I never knew about blood glucose and how tricky it is, how fickle. I'm not a person that is meant to live like this. It's not in my constitution. I know a woman who has been on the restricted ketogenic diet for years due to her inoperable brain stem tumor. She has never over-indulged, indulged a little, but never been kicked out of ketosis. She has, however, been known to chew "cheat" foods, then spit them out before she swallows so that she won't ingest the carb loads. Technically, I would consider that an eating disorder, but is it? Sure, probably, by normal standards it is, however it is keeping her alive, so how do you rationalize saying it's unhealthy? I can't. But, it's confusing.

Now, before anyone says for me to lighten up, or just take it easy, to not be so hard on myself, please spare yourself. I know that. I work very hard at taking it easy (don't worry, I can hear how absurd I sound), I distract myself, I change the thoughts in my mind, but always they seep back in. My life, living on this Earth, is very important to me. I don't know how I can ease-up, to lighten-up when the stakes are so high. I also realize how stupid it is, this juxtaposition of being so regimented, knowing that living in fear, in fight-or-flight mode, keeps cortisol levels high, your immune system low, and glucose high. What I'm doing by over-analyzing things is killing me just as everything from that list above. So what do I do? Do I just give up and enjoy myself? Do I just say forget it? Do I try to live my best in moderation? Moderation is so boring. Ugh. Just thinking about living a life of moderation feels like purgatory. No one ever used "moderate" to describe passion, taste, or really anything I would want to experience. I don't moderately love Dan. I don't enjoy moderate meals. I don't want a moderate vacation.

Sorry I fell into such a tangent. I guess, as I keep repeating, I just wish I could un-know things. I feel it would make my life much more enjoyable, happier, more carefree. Clearly, I'm still trying to navigate the daily reality of living with a brain tumor hovering over my head - doctors may not be sure if there's one in there or not right now, but there's definitely some hovering going on. I just want to live my life, and be happy, but of course, it's never that easy. Ultimately, constantly living in fear, being flippant, or carefree won't stop the need for these...



  1. sorry that you're going through such a dilemma! keto is extremely difficult to get right. i have a few questions though. so when you exercise your liver dumps some sugar into your blood for energy. but ive read in so many places that once you've been on keto for a while and your 'fat adapted' your liver won't need to dump sugars into your blood for something like walking. but that might change from person to person. i suppose each individual needs to test their blood glucose after exercise to see. also wouldn't your body be using the majority of that sugar in the muscles that are doing the exercise?

    also i noticed you're on quite the calorie restriction, what sort of level of calorie restriction have you been told is necessary?

    please note, non of the questions are criticisms, they're genuine questions that im trying to find the answers too, because i don't much like the idea of letting my tumour grow either.

    thankyou for your time.


    1. Ben, Sorry for the delay! Just to clarify, these days I'm on a Paleo diet (grass-fed meats, veggies, fruits, nuts and healthy oils). I keep trying to do the RKD, but it makes me miserable. I'm not tracking my macronutrients at this point, either. I feel very guilty, though, like I'm not trying hard enough.

      Here are my favorite links to calculate the ratios:

      Here are a couple of resources as to why the RKD is great for cancer:

      There are clinical trials going on with the RKD and humans right now. At the bottom it explains the actual arm's details:

      I really hope this helps, please let me know if you have any other questions. I'm happy to help! And keep me posted if you do the RKD, I'd love to hear updates.

    2. I forgot to address the exercise portion. First, Seyfried told me that you can not increase your calorie intake in order to exercise. (Technically, when on the RKD I can only eat around 1000 calories a day.) Second, when we exercise, especially in states of limited glucose consumption, our bodies breakdown protein from our muscles, and turn it into glucose. That conversion causes an increase in blood glucose. I've actually tried it. I was in ketosis and had not yet eaten. My blood glucose was 67, and I went to the gym with my husband. I did 10 minutes on the stair-climber and went to check my blood glucose. The read-out was 121. I had not ingested a thing other than water. Talk about disappointing. The body is incredibly complicated and has lots of checks and balances to keep itself from starving, or hurting itself.

  2. The 2012 photo makes you look like a badass cavewoman, after getting into a fight w/ a leopard. RAWR!! Keep fighting the good fight, lady!

  3. thanks for the reply! i was on paleo, although admittedly not calorie restricted for about 3 weeks and have been on calorie restricted keto for a week now. i was put on 16mg of steroids immediately on diagnosis and they made me so hungry all the time and i had no idea about all this nutrition for cancer and was eating high carbohydrate really high calorie for atleast 6 weeks. hopefully didnt do too much damage. then i find out the steroids were a mistake and i shoudnt have been put on them. they almost crippled me with muscle loss and joint stiffness while i was gaining so much fat. but anyway. the keto is going well thanks. still figuring it out. its not a fun diet! but i reached a state of ketosis after 6 days.

    thanks for the articles, i have a few but havent read these two. it seems calorie restriction is probably more important than keto itself but keto adds to it a bit. although from experience appetite suppression is far stronger on keto diets than carbohydrate higher diet so its probably more achievable to calorie restrict on keto. i really miss the fruit and sweet potatoes i was allowed on paleo though!

    yeah i understand, the body is extremely complicated isn't it. my seizures are exercise induced so its probably best i avoid it for the time being anyway. but it really is the best way to de-stress. such a shame.

    i've got seyfrieds book, although it was £80. it came in the post today. anyway thankyou very much for your help. you're blog has been my best resource by far for information. wish i had found it earlier. keep on inspiring!

  4. one other thing.. how high is your daily dose of curcumin?

    thanks, ben.

    1. Sorry about the delay! I do 1500 mg 3 x day.

    2. I've switched brands of curcumin. I'm doing Longvida which is liposomal (take it on an empty stomach with ice cold water, 3 hours after a meal, and one hour before a meal, that way it doesn't stimulate gastric juices, so that it is absorbed in the intestine instead of in the stomach - can't remember where I just read that though, I wanted to send the link but can't find it). Now I'm taking 1500 2x day.

  5. Hi Jessica!

    I´m in a similar boat as you are, fighting GBM for a year and four months already! I knew your blog through Stephen, who has helped me very much in the last months.

    I also struggle with diet and carbs, and just gave up the ketogenic diet when confronted with the thought of living a miserable life, where everything has to be so controlled and rigid! Feeling guilt when doing something that should be a pleasure of life, like eating, sucks! That´s the price we pay for not being ignorant and happy! :)

    Anyway, I try to keep a carb restricted diet, eating mostly low-carb veggies, meat and fats. but I do eat something with carbs once in a while. I was so happy when my MGMT status turned to be methylated, so I could avoid disulfiram and keep drinking red wine!

    Life was made to be lived! Cheers and keep up the good fight!

    1. Matias, I just happened to be online to see your comment arrive. What a treat! Thank you for commenting. I adore stephen, and the low carb life is definitely great just in general, but I'm with you, some red wine, and laughter, and life, is so important for the soul! I wish we all lived close and we could have a dinner party. I would host! We would all learn so much, and it would healing and fun. I'm honored you checked out the blog. I'll keep you in my thoughts, and if you ever need anything my email is in my profile info. Good luck my friend!

  6. Drop by to visit us @ Stephen´s brand-new blog, until we can make our dinner party, with real Argentinean red wine! :)

    All the best!

    1. Are you from Argentina? One of my best friends from high school was from Viedma, Argentina. An exchange student. And I love the new site site Stephen started, I just haven't had anything to add yet. What a great idea. Stephen is fantastic, and how the patients are banding together is brilliant. We're better together.

  7. Yes, I am from Argentina, and I was also an exchange student in the United States, where a finished my senior year (that was before year 2000!). I´ve been living in Brazil for the last 8 years, where I´ve made my family, including my precious 2-year-old baby girl! You can prepare the food, I´ll bring the Malbec! :)

  8. Dear Jessica,
    I have read that you did immunotherapy in Duderstadt. My dad is diagnosed with gbm a couple months ago and is now seeking alternatives.
    Could you maybe give me your experience with the clinic? I have read that they used your tumortissue for the priming of the DC's. Was the tumortissue stored in paraffin or not?
    Thank you.

    1. Lycka, I didn't have enough viable tumor tissue to use - it was too integrated with healthy brain tumor tissue. However the clinic I go to in Germany uses viral therapy which is just as effective. Always flash freeze your tumor tissue - don't put it in paraffin. My doctor's information is in a tab above, I recommend reaching out to Dr Thomas Nesselhut. They can answer all of your questions much better than I can. I wish you all kinds of luck, and if you have any other questions please let me know!


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