Thursday, June 26, 2014

Cherries Are A Superfood!

I'm home, and although I tried getting back to bed this morning (at Dan's request) I can't help it but hit the ground running. My parents will be here in a few hours to spend the night, as they're flying out to get more venom tomorrow morning (man three months goes by so quickly!). My dad brought us his truck (thanks Aaron for the canopy!) so that on Friday after work, Dan and I will drive over to Wenatchee and spend the night at my parent's house. Because - for the first time - I get to pick up cherries from Stemilt and deliver a batch to Kings and Market Place in Friday Harbor. I am so excited to put faces to names, and say thank you, and give some hugs. Usually my dad, or my dad and his buddy Ron deliver cherries. The whole delivery is really quick, picking up at 7:00 am, driving to the ferry in Anacortes, taking the first ferry we can and then unloading at both grocery stores and then we're back on the next ferry off the island so that we can make it home and rest. Isn't it crazy how everything always bottlenecks? NYC, venom, cherries.

Cherry season is my favorite. They're so delicious! And really fun to eat. I mean, maybe not if you're really proper, but I'm more of a goofy tomboy who enjoys spitting the seeds. My mom has always called me G.I. Joe Barbie because I want to do what the boys do, but I like to do it with a dress, or a skirt, and now that I'm a little older, makeup. I like to be in the competition, in the mix. Now cherry season has gained even more significance. I get so excited for this fundraiser (which sneaked up on me). This year, instead of one big drop, we've divided it into three deliveries to Kings and Market Place in Friday Harbor. So to all of our Friday Harbor friends, when you're walking through the produce isle next week, and you have a hankering for cherries please know that I appreciate your support so very much!

Just yesterday I had to write the check for my shot and with the Euro so strong against the dollar it was over $5700. The treatments are stupid expensive, but surviving seems pretty smart, so whatever it takes I'm willing to do it. Also while at the doctor in NYC I discussed the sodium phenylbutyrate again. He said that it not only helps reduce glutamine/glutamate absorbtion which would slow tumor feeding, but also, the drug is a gene modifier. The problem? The market price is currently over $6000 a month. That's the actual cost of the product used in clinical trials. There is also a chemist's reproduction (you have to find a chemist pharmacy) which is not exactly the same as the drug, but very similar, essentially it's a knockoff. And it comes in at around $1200 a month. The third option is the supplement Butyrex which I own and have taken from time to time. But it's degradingly weak in comparison to the drug. So much so that it's probably a joke for what we're drying to do. There is one health insurance in the United States that will cover sodium phenylbutyrate for malignant gliomas, Aetna (technically it's an off label drug for urea cycle disorders). I do not have Aetna, but since I lost my insurance due to the Obama health care act (long story) and they bounced me down to Medicare, there could be a way when I renew in December to opt into Aetna for prescriptions. It will take until December to find out, but at least there might be a chance. As an aside, a while ago I spoke to the mother of a young woman who has taken sodium phenylbutyrate for around a year (or maybe it's two years by now) and she didn't have any real symptoms. Now, you might think I'm crazy that I'm talking about adding more treatments, but these tumors are invasive, and they morph and outsmart even the best cocktails. I mean, when you get a promotion, you don't just sit on your ass, it sparks you to keep the momentum going! This tumor is my career; I get paid in time. I don't want Hermie to come back. I refuse to be complacent. And if the additional treatment has a low risk profile, I don't see why not. Especially when we already know that IDH1 tumors, like mine, love them some glutamine/glutamate.

This brings me to a another fun rabbit hole I fell into while traveling. Are you guys familiar with methionine? I wasn't until I read THIS STUDY on the airplane last night. For those who don't want to read through the article, it's about dietary changes that you can make to prevent, and mitigate gliomas. One of the points was to focus on methionine restriction, which is an amino acid that is found in the heaviest doses in animal products.

Of course, then this morning, I had to know more. I started searching "methionine glioma", "methionine seizures", "low methionine foods", "methionine longevity". Each search result gave me more information, and more avenues to explore. Again I see that a vegan diet is best, but if you can't go strictly vegan, it would behoove all of us - especially cancer fighters - to cut back on animal products. Even the research with the ketogenic diet shows that it's not healthy unless it's restricted. A purely ketogenic diet is horrible for you. It irks me when I see articles and news reports touting the benefits of the ketogenic diet because they're missing the key point which is the restriction. The diet is actually mostly fat. Like 80% fat. So, of course you're eliminating a lot of glutamate/glutamine, glucose, methionine, etc. Heck, the restricted ketogenic diet is actually more like an elimination diet. You remove a lot of allergens. Anyway, not my point. The reading from last night and this morning reaffirms my choice to go heavy veggies, with an emphasis on superfoods (it really should be a one word term).

See - I can't help it, I start doing tumor research even when I'm supposed to be focusing on my seizure issues. The seizure issues are incredibly complex, almost too complicated to figure out. And the research about seizures is either very inconclusive or correlative but not necessarily causal. There's just so little we know about what causes seizures, or how to prevent them. Another horribly complicated riddle. I actually enjoyed researching methionine since there was clear information I could absorb and use. But for now, I'd better give my brain a break before it short circuits again. Also, thanks for all of the recent comments lately, I'll go through them soon!


  1. Jess,
    I know you get many "helpful medical advice" but in reading your blog today about the seizures coming back it reminded me of my friend's daughter's experience with brain tumor and seizures. I thought I would write and let you throw it out with the bathwater or not. Lisa began having more and more seizures. The treatment was more and more anti seizure medicine. Then, Lisa's friend, who is an icu nurse, suggested that Lisa might be in adrenal failure. Lisa began treatment for adrenal failure and once that was properly handled her seizures went away and she was able to come off most of the anti seizure meds. This made such a difference in her quality of life that I am breaking my rule about passing on medical advice. I wish you the best and pray for your healing. You amaze me at your resilience and stamina.

    1. Your comment completely fascinated me. Thank you for posting! I have now gone over 57 days since my last seizure (yay)! I had never heard of adrenal failure causing seizures, man our bodies are complicated. Thank you for passing that on, and even though it looks like that wasn't my specific issue, now I know about it for the future for myself, and for friends going through the same thing. That's incredibly helpful! I really appreciate you sharing.

  2. jess -- i'm so sorry for your cancer battle. I'm a cancer hobbyest and was looking at dendritic cell therapies and came across your blog.
    I have no medical cred, but have studied cancer and nutrition for a few years. IMHO, you should consider running the noggin' on ketones. Methionine restriction is a buzzword for veganism and is used by the animal rights people.
    If you have the interest, Emily Deans' blog on evolutionary psychiatry is good info on running the brain on ketones.
    And Denise Minger and others have noted the benefits adding the amino acid glycine to diet (bone broths, skin, etc,)

    "Without reducing calories or other amino acids, glycine supplementation increased the rodents’ lifespan, reduced fasting glucose and insulin, decreased IGF-1 levels, and nearly halved their triglycerides—the very perks that’ve variously been attributed to calorie restriction, protein restriction, and methionine restriction."

    best of luck in your fight,

    1. Thanks Ron! I've tried several times to run my body/brain on ketones but it makes me really sick, and unable to function, even causing more seizures since you still have to restrict calories in order for it to fight cancer. I've read all of Seyfried's research (including his medical textbook) on ketones and cancer, but unfortunately it isn't a good fit for me. But I really appreciate that you took the time to post this! If you check out this chart from Seyfried's research (I'm sure you're familiar with him since he's the gold standard regarding ketogenic diets), the Standard Diet (SD) actually feeds brain tumors less than the Ketogenic Diet (KD) and respectively, the same cut in calories translates into a better outcome with SD-R compared to KD-R. Check out figure 2

      There's a lot of information out there about diet, and there is research to support and discredit each one. That's why it makes it very hard to make decisions about what's best for your body.

      All the best, and thanks again!

  3. The cherries are GREAT!!!

    Elaine in Friday Harbor


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