Medical Marijuana: Friend or Foe

Since I shared out loud, opening myself up to friends and strangers about my diagnosis, I have been inundated with suggestions about adding cannabis to my protocol. Sometimes it's been under the cloak of privacy, other times it has been aggressively splattered on my old Facebook page. It is a divisive subject with loyal believers of its' healing properties, conversely others remain afraid of the psychoactive effects, fearful that it deteriorates lives. The first time I ever smoked pot was in high school. I think I was 15. Growing up on San Juan Island, we were taught in our fifth grade drug class that Marijuana grew naturally in our environment. We were taught how to spot it, and that we were to find an adult to remove and destroy it. As a kid, I was fearful of drugs, but marijuana seemed different. I never grew a liking toward it, though I experimented, and throughout the years would still play around every several years with friends. The pot made me unable to do my favorite things, though, like talk a lot, be quick witted, or harness my boundless energy. I still have friends that are regular pot users (which seems like such a lame way to describe it), and they're great. They're brilliant, and hilarious, and successful in their careers, but for me, it was like a rolling haze throughout my brain, shutting doors along the hallway of Thought Process. It was a bad fit.

With that being said, when people shared anecdotal stories of shrinking tumors, the alleviation of pain, or of enhanced sleep, I listened (or read the emails) with the same skepticism I hold toward anti-seizure medications, or standard of care. I would analyze their words and feel my throat ache with the memory of my old cigarette smoking ways (gross - still can't believe I ever lit up). I thought, Man, maybe it could help but at what cost? Smoking causes cancer too, remember? So I tabled it. I have two brain tumor fighting friends who use cannabis as a treatment. One smokes a puff before bed, and the other uses a resin of 1:1 (THC:CBD) orally on a cracker at night. Until recently I had only seen said anecdotal accounts - no scientific evidence to verify cannabis as a viable glioma fighting tool. I shy from believing third, fourth or linearly further removed stories. But, Stephen of AO and I have been scouring, researching, reading, discussing, and we've found information to support the use of medical marijuana for glioma. There's a trick, though, a caveat; there are things to know.

Now, this is not an exhaustive post to teach you everything you need to know about medical marijuana, this is just a basic overview of why I think you should acknowledge the relevance of the treatment. And I'm including a few things you should know as a brain tumor fighter, or as a discerning individual who reads this blog for fun.

Marijuana/Cannabis

• There are over 80 cannabinoids in each plant (THC is the most known, CBD is second most prominent)

• THC is known for its psychoactive effects

• CBD is not psychoactive

• CBD balances THC's psychoactive effects

• CBD has shown impressive results in alleviating seizures, insomnia, anxiety, and tumors

• There are plants that have been bred to have only trace amounts of THC (causing zero psychoactive effects) but up to 18% CBD (the good stuff)

• Industrial hemp which will not get you high, naturally contains a CBD of 3-4% which for a non-bred strain is considered high CBD. 

• The way to ingest CBD is not by smoking. You need to take it as an oil, a resin, by juicing leaves or buds, or turning it into a smoothie.

• THC has been shown in studies to lower immune response (the extent of which is unknown)

CBD & Adult Seizures
http://www.ncbi.nlm.nih.gov/pubmed/7413719

CBD & Childhood Epilepsy
http://www.gwpharm.com/Clinical%20Use.aspx

CBD & Sleep Inducing and Anti-Epileptic Activity
http://www.ncbi.nlm.nih.gov/pubmed/7028792

Like I mentioned, this is not intended to be exhaustive. I just wanted to give a starting point for others. This is merely a little introduction so that you can research for yourself and decide if it's something you may want to use in your cancer fighting. And for those who don't have cancer, I hope this helps open your eyes, and your mind to medicinal marijuana - it certainly did for me. The benefits, and merits of the plant are not debatable. It is proven. The sticky part (ha!) is that it gets a shady (double ha!) rap because of the recreational use which upsets many. Luckily, in my state, marijuana is legal. It's still cost prohibitive to get the doses I need, though. If I purchase the CBD it would cost $56 a day for me to cut seizures, stabilize my infamous sleep issues and copy the proven dosing to fight my glioma tumor cells. I can't afford that. It is frustrating to see something that could help me so much, but I can't attain it, not in the quantities I need. And all of those benefits without any psychotropic effects. Isn't that amazing? CBD could increase my quality of life 100 fold, let alone extend it.

I read, while doing research, that the Washington state House passed a bill (1888) in February to legalize the farming, processing, and sale of raw industrial hemp and related  products. As far as I can tell the bill was stuck in the world of revisions and rereading in the state Senate, now WSU is conducting a feasibility study with an end point of January 2015. The point of argument in the Senate is whether the WSDA should be the sole source of seed or just certify the seed. Hopefully they can figure that out.

The most ironic part of this whole issue, this whole post, is that a major portion of my parents business has until recently been comprised of industrialized hemp imported from (at times Hungary, Romania, and Poland) other countries. It was in the form of hemp twine, cord, thread, even fabric. With sweaty brows, and dust covering my clothes, I have literally heaved shipping containers worth of the stuff, never knowing the amazing power hidden in my arms. I'm coming around, though. Things are changing. I hope this information helps you see the benefits we can harness from this amazing plant.

The Earth has so many secrets still. Lets keep our minds open.

Invisibly Expensive

I'm feeling so grateful to be alive today. For some unknown reason, the sentiment is stronger than usual. It's palpable. It feels good!

I feel like one of the luckiest girls in the world. To have grown up on one of the most beautiful islands on the planet, to wander down to our pond with Kaal watching tadpoles morph into frogs, to collect beach glass on sunny days walking along South Beach. To be influenced by the gracious and reprimanding adults of the community that helped mold me. To learn from teachers who watched me grow from the time I was a toddler, pushing me to always challenge myself, to never settle. To get to experience Costa Rica as an exchange student in high school; realizing how amazingly different cultures are, yet noticing the similarities of human nature. That I was able to travel to Texas for college, experiencing the unique world of Southern Charm. That in my late 20's I was able to explore Thailand with only a backpack strapped over my shoulders. That I was nurtured by Friday Harbor and West Seattle friends who happened to live there, softening the blow of fear as I traveled alone. I was able to analyze who I was, who I wanted to be, what I believed in, and I spent a lot of time questioning the purpose of life. It was a time of epiphanies, of self growth. Then came deep love. True love. The partnering with my soul's mate. Which too soon, came the headache, the demanding of a MRI, and ultimately the moment that turned our lives upside down. That I survived the first tumor resection, then almost died from the blood clot in the tumor cavity. That I learned how to speak again, and read, and write, and walk, then run. That I have survived a second brain tumor, and now I'm fortunate enough to travel for medical care. That I am here, that I'm able to fight for my health. That I currently am without a tumor mass in my brain. It's amazing!  

Last night my buddy Jess and I were laughing about my body. We laughed because Dan and I may not have fancy things, or expensive cars. We don't own a house, or have any assets. Instead, last year alone, we had just shy of $90,000 of medical deductions for our taxes. And that's only the amount that the government recognizes as tax deductable, we had more that we could not write-off. Essentially, in one year, my body cost us over $100,000. It's weird, I'm not draped in name brands, or fancy jewelry, but I probably cost more than 90% of the outfits walking around even the most expensive stores. I am invisibly expensive. Like a diamond in the rough. 

It's humorous, the expense of my body, but at the same time it's kind of sad. I wish Dan didn't have to spend every extra dollar on my health. I wish he could fix up his car, or have a vacation that wasn't centered around a medical shot, or Dopa PET scan. I wish I could give him the wedding he deserves, or shoot, just provide the honeymoon (hubba, hubba). But we will never spend the money. We can't. 

I am deeply happy to be alive, to be able to walk outside and brush my fingertips across our beautiful blue hydreangeas, or kneel down to trace the back of my had across our soft lambs ears (yes, yes I know, technically they're weeds, but the bees and butterflies love them so much). I'm am immensely grateful to be alive, and when I feel disappointed by the inevitable burden that is placed on Danny and my parents (who provide the venom and help with the cherry sales and many things during surgery times and so much of my emotional support), I try to remind myself that we can always get 'things' later. That life won't wait. That my medical care isn't an option. We work so hard to get to the place that most people take for granted. It's not their fault, it's human nature. Young people aren't supposed to get sick. We're supposed to hearty, and healthy and invincible.  

When I feel sad about the things that Dan doesn't get to do, or how his life is changed by my health, I try and picture myself on the west side of the island being whipped by the salty air, or I anticipate the sweet scent of native blackberries that will permeate the air very soon. I just change the subject, and hope that my health will continue so that burden of me, and my care, will lessen. That someday we will be more normal. To not have such financial demands. That I will be able to someday fulfill Dan and my dream of owning a home, and for me to bear him children. It's scary to dream, especially in a world like ours that is so fluid, and unstable, but if you aren't dreaming, then you aren't living. And if you aren't living, you're just not dying.

Here's a delicious drink I created yesterday on my quest to survive this Seattle heat spell. My favorite part is the froth on the top, but if you don't like that just give it a quick swirl with a spoon before you poor. This is not a smoothie, it's light, and meant to be poored over ice.

Kale Cooler

1 liter coconut water 

1/2 cucumber (with peel)

5 large kale leaves (stems removed)

1 celery heart & leaves (I eat a lot of celery as snacks so I keep the hearts and leaves for my smoothies.)

1/3-1/4 cup mint (stems removed)

1-2 inches of ginger root (peeled)

Here's the nutritional information for the whole pitcher: 

The total calories for the entire pitcher: 348. You can add extra water to dilute and the concoction will go even further. I like to drink a full, regular glass, then I keep filling the cup with water because it retains some of the green goodness as flavor.

Don't just not die. Do something that makes you feel alive today. 

Coconut Wisteria Popsicle

It is so hot. Soooo hot. Looking for reprieve this afternoon, I decided to create a random popsicle recipe to make us happy, and distract us from our lack of AC. The 80's are tough, and there's rumors of 90's next week. Ugh. I'm such a mossback. I miss my rain.

Did you know you can eat wisteria flowers? They're delicious too! Don't eat the stems, though, or the leaves or seed pods. All those other parts are toxic, even deadly for young children, especially the seed pods. The flowers taste like butter lettuce with a tiny hint of honeysuckle. Very refreshing. 

Fresh off the vine! (Second round of blooming already this year.)

Ingredients

1 frozen banana (I keep them around in a pinch, you could use a raw banana too.)

2 cans of full fat coconut milk

1/2 cup shredded unsweetened coconut

1 small avocado (pitted & peeled)

1 cup wisteria flowers stemmed

Important to remove stems. If you have allergies you should remove the pistils and stamens too. (We don't so I left them in. I like the flavor, it gives a hint of honey.)

Blend everything (except for the flowers). If it is too thick, add just a bit of water, little by little.

Blend for a quick swirl, literally a pulse or two, leaving it nice and chunky so that you can see some flowers in the mix, along with the fiber of some of the chopped petals. Then you just pour it into the molds, and freeze them. Aren't they beautiful, and feminine? 

This recipe makes about 20 popsicles, each holding approx 109 calories. 

Here's the breakdown of macronutrients and nutritional information for one popsicle. 

You could probably use a lower fat coconut milk, but why? Fat is so good for you. It gives such a rich consistency, making it much more satisfying. I also noticed after eating it, my lips were softer which is an added bonus when everything is so dry.

Anyhoo, I hope you like it! Perfect recipe for a random Wednesday. I wish my niece Isla was with me today. She would have thought the whole thing was as cool as I did. There's nothing like a little scavenging for nibbles in the yard. 

Nature's Heartbeat

"Life is occupied with perpetuating itself and surpassing itself; if all it does is maintain itself, then living is only not dying."

That quote is from a random book I read over the weekend while staying at George & Diane Steed's guest house in Friday Harbor (my brother's wife's grandparents). I can't remember the name of the author, but I'm pretty sure the book is titled Voluntary Simplicity, or something similar of that nature. Reading it, as it was published before the mass of home computers and cell phones, was fascinating. In fact, the Steeds are facinating. The guest house had no TV, no radio, not even a clock, and I loved it. You could hear the crashing of waves from time to time, as they're out on the north end of the island just off the water, and it felt like a heartbeat; that I was snuggled safely in Nature's womb. Dan would still fiddle on his phone, but I completely powered down. We played Chinese checkers over decaf coffee in the morning, and listened the birds outside our window before bed. It was glorious. 

I visited mostly with Diane. She is so interesting, very well read, and curious, and happy, and kind. Dan and I noticed, as we were laying down for a nap one of the afternoons, how much of a treat it was to visit with people of the Steed's generation. We don't get to visit and hear stories from octogenarians very often. The stories we get are from books, or movies, or TV shows. They're often fabricated, or embellished, or extreme, or third party accounts. To hear from real people about their experiences, is a special treat. If I lived in Friday Harbor I would want to visit them all the time. Listening to their stories is like being told unique secrets. Secrets that so few get to hear. 

Life happens in the blink of the eye and each moment I get to spend hearing other people's life stories, the things they've seen, the lessons they've learned, the views they have formed - especially those with some experience under their belt - helps mold me into a more compassionate and open minded person. And it helps me grasp the enormity and the subtleties of the human journey. 

While we were there, we had another rainbow sighting, again with no rain. She popped up while we had been watching the 4rth of July parade, and had to sneak off to do venom. Dan's mom drove the venom down from her fridge and as I laid in the back seat of the car, and Dan dropped the drips into my nose, with my head hanging out the door, I looked up and saw my friend the rainbow. If I had not been upside down, I would never have seen her. Sometimes, even when you don't know it's there, you're being protected, watched over. 

And finally a picture of one of my best buddies, my niece Isla. 

If you look to the back, between Isla and my head, you can see Dan in the background. 

Happy 4th!

Orthoexia? What!

Holy. Cow. I have borderline orthorexia. 

It's an actual thing. 

I was watching the news this morning and a story came on about a girl who went vegan and about a year into it she realized that she would stand in front of the fridge for 20 minutes, overanalyzing her food choices, afraid to make a decision. She was obsessed with picking the healthiest choice (the definition of orthorexia). Hearing her story was like looking into the mirror. The girl became malnourished, having an extreme case of the disorder. I would consider myself more borderline, but the truth is, my obsession with food has lead me to become weak, have more seizures, limited my activities, and has isolated me from social settings. It has been too much. My relationship with food has become unhealthy. 

The tricky part, is that in the case of cancer many people say that their extreme food choices (orthorexia) saved their life. That it stopped their tumor growth, or even healed them. Of course, as with everything, there's a fine line, but I'm realizing for me personally, I've crossed it. Analyzing food has been all encompassing. Food has come to signify life or death. It has become my god and my devil. 

This realization, of orthorexia, comes just several days after making the choice to stop being so restrictive. I have stopped checking macronutrients (even though I can mentally size up grams, and ounces, and calories, and fat content and carb amounts of various foods - vegetables, fruits, meats, dairy items, oils, nuts - by memory) I no longer eliminate things from my diet. I made that decision after observing the fact that my seizures have gotten worse the more I restrict, the more I obsess and remove foods from my diet.

I should say, I can't, nor would I want to, unknow what I know about food. I'm now allowing myself to use my vast knowledge (and part of this is me acknowledging that I am educated enough to make great decisions) to eat the way that I need to for energy, for seizure control, and for tumor-fighting. Every body is unique. Each body has specific needs, and now that I've tried everyone else's protocols, I need to just create my own. I finally feel comfortable enough, after trying every tumor diet I could find, to fly on my own. Now I'm truly off in unchartered territory. My own rules. My own way. I feel empowered, but nervous. My training wheels are off. 

I have always put so much weight on food choices, since I was diagnosed, then progressively so as I researched more and more. Now it's up to me to make the best decisions. To compile all of my reading, my knowledge, and live healthy, to fight my tumor, and eliminate seizures, and have enough energy to get out and enjoy life. I hope I'm making the correct decision. I guess we'll find out in October when I have my next MRI. Perhaps, I just need to have faith in myself. And remind myself that no one diet (vegan, raw, restricted ketogenic, paleo, vegetarian, Budwigs, macrobiotic...etc.) cures cancer. But a percentage of people do well on each one. I need to go back to listening to my body, and quit beating my head against the brick wall of food/diet. 

I leave you with a photo of Charlie, my largest, happiest, cucumber plant. Note to self: I should probably stop naming my plants because it makes it harder to eat them. 

1st Cherry Delivery (this year)

Thank you thank you thank you for buying cherries at Kings Market & Market Place!! You guys are so wonderful!! I love it when you comment about buying cherries, and the emails, and the text messages!! It's like you're sending me hugs, and it makes me feel incredibly special. If you take any photos, I'd love to add them to the blog!

We delivered on Saturday, and the whole trip was a blast. Hanging out with Dan is my favorite thing to do. He appreciates my rediculousness. We were stressed about missing the ferry (which we didn't) but spent the entire trip laughing. And a road trip to deliver cherries might be the best thing ever. It was so much fun! The best part was getting to thank everyone at both grocery stores. This is our third year of selling cherries, and it's a wonderful fundraiser. More than that, though, it's really fun to have something to provide, to not just ask for help. Usually my dad does the deliveries, since I can't drive, and it was nice for us to take over and accomplish what he normally does since he's away getting venom. 

I can't thank you guys enough for all of the support. I love doing the cherry sales, and I feel really fortunate that Kings and Market Place partnered with us to make this a reality. 

Thank you thank you thank you thank you!! :))))))....(that's my smiley face with a bunch of extra chins because I'm so happy).

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!

Off to NYC

I'm headed for my tenth immunotherapy shot right now. I'm a little nervous since I'm barely back on my feet after that harsh seizure. My brain is foggy, and unstable, and I've been dizzy, and frustrated. I'm sick of having to deal with seizures.

I feel like a prisoner in my own brain. You'd think that because we have the wonderful news of no current tumor, that life would get easier, but with the seizures, I've been isolated further. Instead of not being able to drive, now I'm trapped not only in my house, but deeper, worse, I'm trapped in my brain. I don't trust myself; my arm and hand get funny; my vision changes; my blood glucose drops; I feel off; am I having a seizure? Do I need to go lay down? Do I need to grab an ice water or something to stabilize by levels? 

If you've read the blog from the beginning, you'll remember the times I tried anti-seizure meds. I've been on three before. Each time they made me violently depressed, not able to leave the bed. I didn't want to bathe, or even read a book. I would stare at the wall, and when people would come check on me I would lash out. It got progressively worse, ultimately to the point where I didn't even want to live. I felt there was no point. But here I am, a couple of years later, desperate. I can't live like this. That's what I told Dan. We talked, as I laid in bed, with hot cheeks, and a damp pillow, I told him that we have to get back to the days when I didn't get seizures. Or at least it was a rarity. Not back before the tumor (that's impossible), but back when we lived at Densmore. We had a specific diet, and a specific lifestyle, that worked. No more crazy tumor diets. Dan and my parents have been adamant about me avoiding anti-seizure meds - they remember the effects. So I agreed once more that we could try diet and lifestyle one final time, but if it doesn't work, I'm trying more meds. No one understands (unless they've dealt with seizures) how isolating, and terrifying, and limiting they are. It's exhausting, not just for my brain or my body, but for my soul.

The meds are still scary, I don't support them fully, but I'm desperate. Just looking back into them is frightening. They can have side effects like infertility, or other issues which you wouldn't anticipate a correlation. More obvious issues include slower thinking time, memory issues, here's one link with information: http://m.neurology.org/content/69/22/E27.full.

For now, I'm back on track focusing mostly on seizures, not necessarily tumor prevention - although often they have similar treatments, two birds one stone. I kinda feel like I'm playing wack-a-mole right now, and all I want is to be able to live, to cook a meal, or go for a run with friends and not worry about being stuck and having a seizure. It's ridiculous, and I hate it. Just when we get great results about the tumor, the seizures flair up. Incredibly lame. 

As we talked, me mostly venting, Dan made 12 guidelines to get us back on track to emulate the Densmore days. Here they are in no particular order...

1. No processed sugar

2. Limited fruits (an apple a day, or berries in a smoothie)

3. No grains/legumes

4. Unlimited vegetables

5. Limited/moderate nuts/seeds

6. Lean meats (but only 10% protein daily)

7.  Regular nights in bed by 9:30 pm

8. 60 minutes of excercise daily (even if it's walking, or floor exercises at home. Doesn't have to be consecutive minutes.)

9. Limited dairy

10. Only decaf coffee, and that should be limited as a special occassion treat.

11 & 12. I can't remember right now.

We'll see how it goes. Essentially, it's just a guideline to live healthy, and happy, and it should get me back on a regular stable blood glucose (low BG is a trigger, which can often come after a spike), have more regular energy (excercise as a priority), and better rest (regular sleep schedule). You'd think I could just do this whole thing already, that if I just lived moderately, that it would all be fine. But I have some triggers that I need to isolate. I have to pinpoint the problems so that I can avoid the issues. Please wish me luck. I'm so tired of fighting, fighting the tumor and the seizures, but it's what I have to do. I won't give up. There has to be a way to succeed.

UCLA Results

I finally mustered the strength to call UCLA for my MRI results. They agreed with the UW radiologists that there is no visable tumor. The fun twist is that instead of automatically planning my next MRI with a Dopa PET at UCLA in October, they recommended that I just stay here in Seattle. If the Seattle MRI shows up questionable, then I will need to fly down for a Dopa PET. So now, all I need to do is keep fighting, stay healthy, and have no new growth in October. Not having to fly down to UCLA would be a huge relief, both financially and emotionally. 

Flowers from Danny after the good news...

My brain is still hazy and slow after my seizure, so this is all I have in me to write. Like an earthquake, there are aftershocks of energy throughout my brain and at times it feels touch-and-go so I really need to force myself to rest. As it always is, I know the threat will subside the longer I make it from the seizure. I just have to be patient.

For now I will relax, falling asleep for my nap with relief, and a smile. I can deal with seizures for the rest of my life, I'd be happy to. Compared to the tumor, they're just like gnats. Annoying, but I can live with them.

Water-Only Fast = Seizures

Oh fudgeknuckles. I did it again. The thing is, you'd think I'd remember that I have stress-induced seizures, and here I was doing a several day water-only fast. And the whole point of a fast is to stress the body so that it cleans out damaged cells. Stress, the word is written directly in the description. Fool. I always think I can handle more than I can. But the payoff (a completely regenerated immune system) was so great that I had convinced myself that I could handle it. I believed that I could make it three days and that it would be great. 

But that's not what happened. About two hours after that last post, I was waiting for the iron to heat up to press Dan's shirts, vacuuming the house to kill time, when I started to feel off. I told myself that everyone doing a water-only fast feels off, but I still made my way to the kitchen to eat the second half of my papaya. What I noticed first, was that my right hand and arm were icy cold, and I was having a hard time spooning the papaya meat. I thought to myself that I needed more fruit, that I didn't feel well but needed something gentle on my stomach, but we didn't have anymore. One trick from my doctors is to eat something sweet when you're about to have a seizure, I guess it's supposed to help slow the onset, or perhaps even lessen the intensity. When I have my stress-induced seizures I'm typically hypoglycemic (another reason that I've come to reason why I probably shouldn't fast). I've checked my blood glucose levels a few times just before seizures, knowing I wasn't feeling well, and it's always in the 40-60 range. This time, after having eaten the rest of the papaya I was at 69. Even with the symptoms, I was surprised by the number. I guess I should take that stuff more seriously.

After eating that final half of papaya, I didn't have anything sweet in the house, that I could think of, until I remembered my mom's cherry bourbon jam. It was a miracle that I got that jar open. (I live with a man with the grip of a giant.) I spooned out a bite, then realizing that I was out of my seizure pills, I walked to the bedroom to lay down. Looking back I knew it was coming, ultimately, from the time of the second half of the papaya, but kept pushing to check my blood glucose and get that jam. I wanted ice water too, but knew I was about to hit the floor if I didn't just give up, and retreat to a safe place. It was so cold in there, probably low 50's (we don't have central heat), that I had to get back up and turn on the wall heat. As I laid back down, shivering, I kept thinking, "Breathe. You're fine. You can get through this. This is no different than normal, other than the lack of pills. It won't change anything. Deep breaths." And as the pins and needles in my hand grew stronger and creeped up my right arm, hot tears dripped down my cheeks and landed into the basins of my ears. I stared at the ceiling as things progressed, ever more painful as it reached my shoulder, then my face. When it hit the top of my skull I could have thrown up from the inner hammering, but I was too distracted. I realized in that moment, that there was nowhere else for the energy to go but back into my brain. For many, these seizures often progress into Grand Mal seizures, or turn into a series of episodes. I braced myself. Already it was the most aggressive seizure since my onset seizure back in 2011, a Grand Mal while driving. Usually the tingling stays around my hand and arm, but this one kept progressing until it had engulfed my entire right side. And it hurt, oh God did it hurt. In unchartered territory, I didn't know if I was headed into a more scary state, loss of consciousness, vomiting and choking to death, losing control of my bowels or bladder. I new I was helpless, so I kept taking long, slow breaths. 

As I braced, I twisted my neck to feel the cool pillow on my right side (that half of my body was on fire to the touch). In that moment, the coolness soothed my face and my mind and I had the sense that it was going to be okay. Under my breath, I began whispering over and over and over, "Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you."

As the seizure subsided, the pain continued to surge, but slowly lessened into a deep monotonous throb, both down my arm to my hand, and throughout my brain. Usually my seizures don't cause that kind of severe headache.

Not feeling well, still reeling, and aware of the seizure activity swirling in my body, I knew I needed more lorazepam, and I needed it soon. I called Emma into our bedroom (she's not normally allowed - she sheds too much) and asked her to come lay down on our bed to keep me calm. I've read that petting animals soothes the brain. I then called Dan and let him know the basics. He was headed home anyway, so that was handy. I then set down the phone to rest, just talking on the phone seemed to re-trigger the seizure energy in my brain. It was too hard to think, to talk. But I was scared, I knew I needed more pills, but Dan was driving, and I didn't want to bother him. I didn't want to put him in danger, knowing he was probably already speeding to get home, I wasn't about to add a phone call while driving to his tasks. I took several breaths and called my parents and gave the cliffsnotes of my dilemma. They asked for my doctor's name and quickly told me to hang up, that they would handle it. 

For the next 15-20 minutes I went in and out of various states of nausea, and tingling, and shivers, and hot flashes. I remember wondering if I should go find my empty lorazepam bottle and lick the old dust particles for some of the microscopic relief, but it seemed like too much energy to muster. The pain never went away, but did eventually subside. Danny was able to pick up the prescription, the one my parents were able to get renewed, I took a Lorazepam and everything eased up from there. The headache remained for the rest of the night, but I didn't have anymore seizures.

Needless to say, Friday was eventful, and perhaps a clear sign that I'm not meant to challenge my body with several day water-only fasts. Not as a person with stress and hypoglycemic induced seizures. You'd think I would have assumed it before engaging, but it never seems to get through my thick skull (not even through the surgery cracks) that I am not normal. I have special needs. I like to believe that I'm just like everyone else, but it isn't the case. One of these days, I have to accept it.

Day 3 Water-Only Fast

Oh man, I broke. I cracked. This morning I woke up with such strong hunger pangs that it was almost unbearable. I tried tricking myself with pint after pint of water. I sipped a few herbal teas, and paced around the house. I thought about going for a walk around the lake, but worried I'd get to the other end and run out of energy and become stuck. And it's cold today, and rainy (finally!) so that seemed like a bad idea.

Overnight, my stomach collapsed, and appeared inverted, concave. At least that's how it felt to me. It was very uncomfortable, kinda painful even. I still made it several hours, but finally relented. I grabbed the most gentle option, my trusty new favorite fruit, the papaya.

I only ate half, and discarded the seeds. Figured they would be too hard on the stomach. You can eat those gorgeous blackish green seeds. They taste like a combo of cracked black pepper and mustard. They're a fabulous anti-parasite food. You can toss them into salads (yum!) or add them to smoothies to clean your system, it's pretty neat. I love using unique foods for health. I figure there's so much that we don't know about the benefits of various food parts, but I'll bet there's a lot of healthy synergistic properties.

So, technically, I failed. I missed my goal by 10 hours. I ended up on my water-only fast for 62 hours. It's definitely the longest I have ever fasted, so I still feel accomplished. My plan is to remain on the fast to the duration, having only broken with that (delicious) half of a papaya. And man, I do feel better after having eaten a little. I imagine that the shorter than anticipated fast was still cleaning out some of my damaged cells, and probably stimulated my immune system to some degree.

From all of my reading around the interwebs, so many people said that when they broke their fasts they had no desire for junky food. That's how I felt yesterday, but man, I sent Dan a text a little bit ago and told him I could eat everything at PCC and then finish it off with a case of movie theater boxes of candy. Even if it was Good n Plenty which are categorically disgusting. So much for this changing my tastebuds, or squelching cravings. Oh well. Guess I still have to rely on self control. Less fun.

A couple of friends, during this experience, voiced concerns about the fast. A couple (remind me to send them Christmas gifts) worried that I'm too thin for a water-only fast (might be the first time I've ever heard such a thing about my body). Anyhoo, I am definitely not too thin. And to prove it I will share my stats.

Age: 33
Height: 5'7 (technically 5'6 3/4)
Weight: 140
BMI: 22
Body Fat: 28% [I still think the guy at the gym over-pinched with the calipers...:)]

So, according to the charts, I am literally dead center in the normal range. Healthy. I think that, perhaps, with the expanding waistbands of our culture - and the world - we have a skewed perspective of normal. I take it as a huge complement that some of my friends think I look "skinny" but ultimately, the optimum stat that I need to achieve is a body fat of 22%. A 6% drop. That's what I'm working toward. Body fat not only holds energy for cancer growth/tumor growth, but also toxins are stored in your body fat. Clearly, you don't want to waste away, you don't want to drop into an unhealthy range, but according to theorists, there is an optimal range for fighting cancer and they purport the 22%.

If you don't have much excess, it allows your body to focus on keeping your immune system strong. Your body can then clean out damaged cells, and keep things running smoothly. There's even research out there that people who live slightly underweight, have a lower incidence of cancer (lucky dogs). So, I'm trying to be healthy, to turn my body into a cancer fighting machine, to give her the most optimum chance to clean out tumor cells, to remove her tumor snacks. A side effect may be looking better, but that's just a byproduct. This is not driven by looks. I already feel good in my skin. More so than ever in my life I am confident. Probably since I have a different view on life since diagnosis. But I do acknowledge that I probably have a good ten pounds of pure fat that's visible on my body. I could lose that and still look really normal. I just need to curb my enjoyment of gorging on delectables. I don't know how I will ever kick my inner monologue that if one cookie is delicious, 10 is better. I feel like I was born that way.

I tried going raw vegan for two weeks and it made me feel awful. So I know that RV is not the lifestyle for me. I have a pretty good idea about what to do, and how I will be successful. It has to do with lots of veggies, and an egg here or there, and some nuts from time to time, and bits of fruit, but mostly it's about a caloric cutback. There will days that I don't restrict calories, perhaps for a hard workout day, or for someone's birthday celebration (like my own in August). It has taken me so long to figure out this whole diet thing, and laughably, I'm still living fluid with my beliefs. But it seems to be getting a little easier with the mantra of cutting calories, cutting portions, and eating clean, whole natural foods. It's all common sense stuff. You'd think I would have figured it all out a lot sooner, but I had to try several various cancer fad diets, hoping for a cure. Now I'm a little more reasonable. Hopefully this one works.

Day 2 Water-Only Fast

I have had bouts of hunger throught the day, but mostly I just feel great. I cleaned the house, and did laundry. I talked to a buddy for hours on the phone (a rarity), and laid down for a nap. I am amazed by the amount of time I spend on food related energy. What's for breakfast, what's for lunch, what's for dinner, what do I need, chopping, blending, taking out the compost, washing dishes, going to the grocery store, thawing things, etc. I keep walking into the kitchen to get more water and am amazed by how clean the kitchen remains. 

I feel a little disappointed that it'll be over tomorrow night. It is all happening so fast. I can't believe how much I am enjoying this experience. It sounds insane, masochistic even, and I would never have imagined this as an outcome, but there it is, I can't deny it. Life is so much easier, the day oddly fluid, when you don't have the punctuations of meals. No more decision making, no more worrying about macronutrients, no more worrying about blood glucose spikes or counting calories. It's a mental vacation, and freedom from that judgemental voice always monitoring my food choices. I know I can never win anyway.

I don't want to downplay the level of difficulty, because it certainly has been hard, but it absolutely has wonderful benefits well beyond health. If I worked outside the home I don't think I could manage, not with the seizure issue, but thankfully, I don't. I have the safety zone of my little nest, and it continues to nurture me to health.

Three Day Water-Only Fast

I'm 21 hours into a 72 hour fast. This is why...



You can also read the article HERE.
If you're more interested in the research study, instead of an article click HERE.

There are all types of fasts out there; juice fasts, fruit fasts, broth fasts, minimal calorie fasts, you name it, there's probably a fast out there. They're a divisive topic with fervent stances on both sides. Some say they're great for cleansing, fabulous for your health, and others say they damage your metabolism, that they mess up the delicate homeostasis of the body. As for me, I don't know what I think. It seems like there's both benefits and concerns. But this new research study that's been splashing around the internet showing that fasting for 2-4 days can completely regenerate the cells in your immune system, got my attention and drew me in.

To keep myself sane, I have been drinking pint after pint of water, and a smattering of herbal teas (which I chose because they're are usually caffeine free and calorie free). This afternoon I felt well enough to walk the lake with Emma, but I'll be surprised if I'm able to do it again tomorrow, let alone Friday. I'm just trying to take it easy and get through this. I have a friend who's done a seven day water-only fast, so I keep reminding myself that three days should be easy. I mean, jeez, I'm almost a third of the way to the finish line.

I'm definitely feeling hazy, but the growls in my stomach are oddly refreshing. It reminds me that I'm strong, and dedicated. Too bad my subconscious didn't get the memo; I took a late afternoon nap and dreamed of juicy, chilled green grapes.

On my walk today I glimpsed this chalk message. How fitting. Maybe the penman was on a fast too....know what I'm sayin'? Ha.

It's All About Images

Good morning. Sorry I haven't written in a week, I've been dealing with a horrible reaction to one of my treatments - cystic acne. GROSS. It has been all over my entire face, and one of my saddlebags. (How is that even physically possible?!?) It was absolutely disgusting. I've since kind of gotten it under control. My friends didn't believe that it was that bad (apparently I'm always saying that my skin's broken out when I only have a zit or two - whoops, the girl called acne too many times) so I had to send them pictures. And finally, with solid proof, they relented, agreeing that my breakout was major.

I had been dealing with acne for the past month, and I wrote it off as stress related, a disappointing side effect of MRIs. But as it continued to worsen, even after the MRI, I realized that I needed to reevaluate the issue. First, I stopped all treatments except the blue scorpion venom. Then I looked back to the times I started various supplements, and I talked to Dan, analyzing if we remembered any bouts of acne. Finally, looking back to my log book (which is not as thorough as it should be, but still quiet helpful) we pinpointed the PolyMVA as the most likely culprit.

I also wracked my brain about any changes in cleansers, laundry detergents, etc. but nothing had changed. I started looking into the PolyMVA and read that it is comprised of a variety of B vitamins like B1, B2 & B12 (and some other antioxidants). According to what I've read around the internet, B12 stimulates sebum production (the oil on our skin) and excessive sebum is what causes cystic acne; it's what clogs the pores. Some people with even the slightest supplementation of B vitamins breakout in pimples, and I was doing major doses. Anyway, I'm sure you guys don't really care about acne, but I'm telling you the acne on my face was debilitating. I didn't leave the house until yesterday. Almost a whole week. Man, I'm vain. But seriously, my face literally hurt, so it wasn't actually purely about looks. I talked to another BT (brain tumor) friend who has been taking PolyMVA for, gosh, I think a year or two and she has never had any problems. But each body is different, and each body's needs are different. And I have exceedingly sensitive skin, it's practically impossible to please, so even the tiniest of adjustments could lead to a nuclear situation.

So how did I fix it? Well, I still had several days worth of Accutane, so I started taking those again. Accutane dries up sebum production. I also started putting tea tree oil on my face, a more natural way to do the same thing. For the first few days, it was not getting better, and I was frustrated, discouraged. Good thing my parents were headed over for the West Seattle all school high school reunion Friday, and my dad's 50th for West Seattle on Saturday, and mom packed the big guns for me. Gotta love moms, they're always saving the day. I've been terrified of chemicals, never knowing what contributed to my cancer, so I try and do things naturally, but sometimes in order to get things under control you have to make a deal with the devil. It took several applications of Retin-A, and several applications of Benzoyl Peroxide. Both, I believe, are known carcinogens (at least in some countries - our country likes dispute carcinogenic claims, even when well documented). But I HAD to. I have pictures to prove how disgusting it was, and I don't want to show you, but at the same time, you almost have to see how disgusting it was to understand. It's embarrassing when your skin is rupturing. It's your shell, your image. It implies that there's something fundamentally wrong with you. I'm trying to live as a vision of health, so when something like this happens it shakes you to your core. You feel helpless, disgusting, like a failure.

Okay, I can't do it. I can't move myself to upload the photos, or even one of them. I'm too embarrassed. Too proud. It's weird, I mentioned this to a friend a few weeks ago, that although I'm married, and fighting cancer, I still want to be seen as attractive. There's this thing that happens when you get diagnosed with a "terminal" cancer - maybe for any kind of cancer, I don't know - people love you, so they feel bad for you. They may not describe it as pity, exactly, but you get tossed into a different category. Almost ambiguous, and asexual. People see your trials, and know your struggles, what you're working with, and you become less human. Or too human. You become either too vulnerable to tease and flirt, or you become too scientific, too medical. Of course, here I am blaming everyone else, maybe it's me, maybe I'm just too serious. That I'm different. That's possible. I've talked to others though, in my position, and there's definitely a divide once you're diagnosed. People don't know how to handle us. It has to be awkward, I guess.

Regardless of all the above written word, I have to say that acne - although frustrating - is a great issue to have. Acne is fixable. Just a few weeks ago we were worrying about radiation, clinical trials, discussing what we would do if the tumor was back. And I wish I didn't care about being attractive. Dan has always found me sexy, even when bald and simple minded, that should be enough. Who cares what other people think? Right? I don't know why it isn't just that simple. Ego? That's embarrassing to admit.

Here's a much cuter picture than me, it's my father's senior class photo. Isn't he adorable?!? Man, I can finally see Kaal (my brother) in that face. Crazy how we grow into our parent's images. Pretty cool.

Quite The Impression

"Postsurgical changes of a left parietal tumor resection are again noted, including a CSF (cerebral spinal fluid) filled resection cavity, confluent T2/FLAIR hyperintensity surrounding the cavity, a loculated extra-axial fluid intensity collection, and mild stable dural enhancement. The degree of confluent T2/FLAIR hyperintensity surrounding the cavity is not significantly changed from the most recent prior study and extending back to 2013."

"Impression: Stable resection cavity when compared with the most recent prior study, and multiple prior studies without new extension of T2/FLAIR hyperintensity or new nodular enhancement to suggest tumor."

And there you have it. Unless I'm reading it wrong, it's excellent news. Now, maybe, finally, I can have a bowel movement and my acne will clear up. We still have to wait for UCLA's confirmation, but we remain happily optimistic. Any time we see the words, "without new nodular" or "without new extension" we're relieved.

All day I was a zombie. I was lethargic, felt sick. Now I can breathe, and relax, and celebrate. You never know with these things. I've felt fine in the past and had tumor growth; I've been riddled with seizures and had no tumor growth. You can't necessarily tell if you're getting sicker.

For now I don't need to know more. I don't need to think. The best day is today, that in this moment, just off the scan, we have tangible results about what's happening upstairs. I can feel confident.

I can't wait to start tomorrow anew. A recharged soul ready for more research, or a run, or my ridiculous version of yoga - or all of it. I'm fresh again. 

I'll never tire in my awe for the amazing gift of this life.

(A nasturtium from our garden. Enjoy him now because the poor guy's headed into our salad tonight.)

We're Off

Headed to the records department in a few moments. I'm so nervous to read all of those terms, the removed, scientific way that they explain my condition. This all feels so dramatic, I feel silly, then am reminded that the results determine so much. It's either a relief, or another trip to UCLA for more scans, more recommendations, more treatments, more effort.

My favorite weekend treat yesterday, family...

No more procrastinating, Dan's here to get me. Here goes nothing.

It has to be done.

Angels Everywhere

A guardian angel left a rainbow trail today in the middle of the afternoon. Don't see that very often. My photo doesn't even begin to do the colors justice. There was no rain, no precipitation whatsoever. I have no idea how it occurred, but it was magnificent. I've never seen anything like it. It felt alive, as it waved, and inched across the sky. A happy sailor.

According to the MRI tech this morning, we should have the radiology report on Monday afternoon. I have to head down to the medical records department at UW, and check it out, then fax it over to UCLA. I'll let you guys know how it goes. I have no inkling, no premonition, no intuition one way or another. All I do know is that it's a beautiful day, here in Seattle, and I am worn, exhausted. I am sitting, wrapped in a blanket, my feet wiggling as the sun licks my toes. It makes me deeply happy, can't help but laugh at the simpleness in this moment. 

Working With A Governor

You know what's crazy? You get diagnosed, you go through surgery, you recover, then the real test comes in living your life knowing that you have tumor cells in your brain, that the tumor (always) comes back (according to your doctors) then you start over again. Each time they dig in your brain you hope you wont die. You hope that the majority of your brain, the stuff that makes you you, will remain after they fiddle. That you won't be too damaged. You know before hand that you'll never be the same, no one ever is, but all you can do is hope that it's a minor shift. You go home, you fight, you research, you add treatments, you change your diet, you work incredibly hard. And at the same time, even though your whole life has been derailed, all of your dreams put on hold, except for a twinge of sadness here or there, you're just thrilled to be alive. You live your life revolving around scans and treatment, knowing each scan could be all it takes to devastate, that each treatment may not be enough. You battle fatigue, you battle the horror of seizures. And all the while, through it all, you're just happy to be capable of reading, and writing, and walking, and running, and laughing, and recognizing the beauty of each moment, of everything around you and most of all that you're able to fight. Cancer has a way of stopping the world from spinning. Everything happens at once, then not at all.

Tomorrow morning at 8:00 am is the MRI scan. Again they poke, jerking that needle into my vein, readying my body for the contrast dye that will tell all of my brain's dark secrets. Each MRI, each scan, is the biggest test of my life. Essentially, I live each day studying for this moment, for each exam. I remember my parents telling me when I was in my 20's, with admiration, that I was the consummate student - that it was my lifelong passion. We just never knew that I would be attending my own university, earning my own solitary degree. A degree in my body, my health, my survival. I love learning about the facets of tumors, of tumor life, how to outsmart them, to jump the hurdles. Sometimes it's scary. Sometimes it makes me viscerally ill. Regardless, I continue. My only wish is that I would have more energy, that my brain wouldn't shut down. Since the first brain surgery my body has a governor, and there is nothing I can do to change it. I work within specific boundaries that my body dictates. You guys know I fight it, pushing too hard at times. I keep hoping that just like with a muscle, all my mind needs is exercise to gain endurance. Doesn't seem to work that way though.

Sorry for the delay in my email responses, I'll probably be backed up for the next week - I'm still having to take daily naps to catch up after all that research. Please send a second email if you have an urgent question and I'll do my best to get back to you. For now, Dan's sneaking me off to hit golf balls (a close second to my favorite - the batting range) to de-stress.

As ever, but profoundly obvious, my fate is in the hands of the universe. Let's hope I've done enough to keep that parasite at bay.

The Most Poignant Riddle

Good morning. Been resting up from my worcation. I went to my parent's house to sleep, and meditate, and watch trashy Bravo TV (we don't have television anymore), but I got trapped in the vortex of the tumor world. Researching to make sure that you're living right, is much more satisfying than any other pastime. The tricky part is that my brain gets fatigued pretty quickly, and by Saturday it was fried. That morning Dan and I drove to the senior center where Grams lives. We brought her some goodies, and pushed her around outside. As we were driving home I had a mental lapse, I literally couldn't remember where I lived. Weird. It took several minutes for me to remember the image of our home. My mental Rolodex flipped from house to house, city to city, and finally I figured it out, but it was scary. Several moments of dementia. I don't know if it was a seizure thing - it didn't feel the same - or just lightheadedness from the CR, or worse yet, tumor growth? It scared Dan. It scared me.

I'm chalking it up to mental exhaustion. No need to panic. The MRI is near, and results will be available next week. We will know what's going on in my brain (to a certain extent) soon enough. I kind of don't want to know what's going on in there. I'd rather just keep going along with my current path. If the tumor is growing again, I don't know what my next step will be. There are a few promising clinical trials out there, and some positive off-label drugs I could add. I know that if the tumor is growing the next recommendation is radiation. I also know that as an IDH1 mutant glioma fighter, radiation is said to be more effective. That's new information that has recently been coming out in the research, anyway. It's a double edged sword because it's always great to have more treatment options, but at the same time I really, really, really don't want to do radiation. So, we'll see how it goes.

In the meantime, after last week's research, I've decided to go raw vegan for a bit. It's mostly veggies and some fruit. I realize that there are all kinds of diets out there for cancer, and brain tumors; the RKD, vegan, vegetarian, Paleo, caloric restricted, macrobiotic, you can do the Gerson therapy, or do the alkaline diet, and you can find someone who has survived from each one, even survivors who have never changed their diet and still live on SAD. It's kind of a crapshoot. There is no surefire diet to stop brain cancer, or any other cancer for that matter. These molecular aberrations will not respond to the same diet, nor the same treatments. Cancer may be the most poignant riddle of all time. But with that being said, there are direct correlations between elements of diet and tumor growth. It has been proven. For example, IGF-1 in animal protein, artificial sweeteners, sugar (of all kinds), artificial dyes, nitrites & nitrates, MSG, just to name a few. So what do you do? Do what feels right. We are all walking this walk together, but at the same time we have to use our own legs. I love learning from you guys, and I appreciate you sharing your knowledge and wisdom. I wouldn't be as far as I am without your help. When I share things, I don't expect you to jump on my bandwagon, I just want to give you the chance to check stuff out and see if it helps your situation. The IGF-1 issue in animal protein was definitely a game changer in our household. Thank you for all of the comments over the past several posts, the dialog was exciting, and very instrumental for Dan and I to adjust our lifestyle.

In one of the comments there was a mention of a couple of documentaries, the most profound being (in my opinion), Eat, Fast, Live Longer. If you enjoy nutritional documentaries, or just want to get your mind blown, please check it out below. (If you have any problems viewing it CLICK HERE.)


Eat, Fast & Live Longer HD by limoslight

Thanks again for all of the continued help as I navigate this curious journey, I can't measurably express my gratitude. There is such power in numbers.

Blinded By The Fashionable Ketones

I've been swimming in the interweb waves all day. I'm gathering, learning, relearning, trying to absorb, planning.

Things I know:

• You can not completely eliminate glutamate/glutamine from your diet...it's in every once living thing (except lard & most oils)
• Your body can create glutamine/glutamate when it wants it (thanks muscles and other less obvious trickery)
• You can eliminate glucose from your diet, but your body will just create it anyway (muscles save the day yet again)
• Limiting glucose and glutamine/glutamate is ideal for slowing tumor growth, but when hungry, a vegetable which may increase circulating glucose is better than eating a bit of meat (only because I'm IDH1 positive - the glutamine eater)

See, I knew, I had heard, I had read, I had discussed the fact that protein is a growth factor for all cancer. But I got bogged down with the whole ketogenic trend specific to brain tumors. I thought, perhaps we were bred differently. That we were special. That ketones were the key. I'm not saying the ketogenic diet doesn't help slow brain tumors, but from the research I've read it has to be calorically restricted. In its natural state the diet does not slow tumor growth (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1819381/figure/F2). But in my mind, I figured, if I could do the restricted ketogenic diet (allegedly the ketones themselves fight tumor cells if you get a high enough blood serum level) at least most of the time, it would be better to reduce the glucose, and protein (not realizing it was specifically glutamine/glutamate I needed to focus on) with the RKD than be a vegetarian or even do Paleo. The problem continuously surfaced, though, that I would putter out of energy. And when that happened, instead of reaching for a vegetable (carbs kick you out of ketosis) I would reach for protein like peanut butter or a hard boiled egg. Exactly the wrong snacks for low grade IDH mutant brain tumors. I was essentially handing Herman a big ole glob of glutamine.

It's crazy, I remember a phone call with my nutritionist where she emphasized that my green smoothies (which are all vegetable save an avocado & lemon) turn directly into sugar in my body; that without protein with each meal and snack, I was killing myself. Not her words, but still. She was emphatic about the huge sugar spike that would surge through my veins, therefore feeding the tumor. IE: Killing myself. Same same. It put the fear of Hermie in me, driving home the whole protein must be included to survive mantra. Remember all the times I've written about feeling guilty about my apples? That was because of my nutritionist. As was my deviation from my green smoothies. It leaves you feeling crazy. Who's right? What do I do? Am I just supposed to pick the lesser of two evils? Glucose spike over protein consumption? Girl still gotta eat.

Things I know:

• Known unbiased tumor fighter = caloric restriction (click for a great study on the benefits). It doesn't seem to matter if you eat the calories from protein, fat, or carb, just be sure to take your BMR and cut it by 30% (some say 20% others 40%). That's the surefire way to hypnotize the giant. It won't stop him, but it'll sedate him, and maybe during that time we'll find just the right cocktail to kill him. It's also the thing I always forget. Or maybe I just don't want to deprive myself so I black it out from time to time. :)
• Healthy fats like omega-3's (fish oil) continue to be a great way to supplement my diet. One of the least burdensome of the food groups, in regard to the glucose/glutamine issue. However, not that palatable as a snack. Just sayin'.

Reviewing over my notes, it's clear about the caloric restriction, but I'm also wondering if perhaps soduim phenylbutyrate & metformin could really work together, like hit it out of the park, for IDH mutant tumors (along with all my other goodies, of course - my newest motto is never take away, only add). I know I repeat myself a lot, but it takes a lot of hammering things into my brain, and even then details and concepts, the most obvious of stuff, often slips away. I wish I could just blame it on the tumor, but I think the more you use your brain the more you have to make space. Happens to all of us.

Am I more scared about this MRI than usual? Maybe. It's the turning point that we hit and had tumor growth after the first brain surgery, so technically, this is when Herman should show back up. Not to mention the fact that the proliferation rate of this tumor was faster than the first. If they see tumor I won't be surprised, only disappointed. If they don't see tumor I will consider it a miracle. It's not that I'm pessimistic necessarily, I just don't take this no-visible-tumor stuff for granted. I don't assume that all of these treatments "have" to work. There have been so many that have gone before me that have given everything they had, and still, it wasn't enough, they were taken. I know that life is a gift, and although I'm scared, more than scared actually, with every exhale of breath I remind myself that I just enjoyed a luxury.

Time for lunch...