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August 2013

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Change is Good

First, before I get into my post, I am sending a huge hug and thank you to my buddy Jess (Abu Dhabi), her father Leopoldo, and my adorable mother-in-law Linda. I forgot to mention that back after the first brain surgery in 2010, Linda sent us some info on the chlorotoxin, but we all thought it was nuts. Then, a few months after that Jess’s stepmother’s (Leopoldo’s wife) sister traveled to procure some chlorotoxin while she was undergoing chemo for her cancer (I hope I’m remembering that correctly). Anyway, I wondered if it would even work for me, for brain cancer, but it all seemed too outlandish, it seemed crazy, and unattainable. As a side note, last I heard, Jess’s stepmother’s sister is in remission. Recently, when we heard about the clinical trial at UW we remembered that that chlorotoxin had been in our minds and bounced around in our mouths a few years ago. That started a chain of events and once we started looking into the venom, Jess offered to help me track it down. (Most websites are in Spanish and lucky for me, Jess is fluent.) Once we decided 100% that we were going to do it, Jess’s dad offered to bring me the venom from the Mexico side (the clinic has a satellite in Mexico), being that he lives in Texas and has family in Mexico. Anyway, turned out my parents wanted to go to the source and see the scorpions, and meet with the people who are harvesting the chlorotoxin. But all of this was expedited with the help of Linda, Jess, and Leopoldo, and I am SO grateful! My other news is pretty big. I have decided, after struggling for weeks, to go back to my Densmore Diet. That’s my new name for it…

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Day to Day

Good morning! I’ve got the venom routine down, now I’m fiddling with the diet. I emailed the clinic too see if their “low fat” instructions have to do with an interaction with the venom or if they are purely giving nutritional advice. If there’s some sort of interaction with the venom then I’ll be all about the green drinks again (Yesss!!)), but if it’s just a suggestion for general health I’ll stay with the restricted keto (or a version of). I have the restricted keto ingrained in me, I still check my blood glucose, and I get a visceral reaction when my glucose is above the 70’s. I become very fearful that I’m feeding the tumor, and that’s not good. In a way I kind of wish I never would have purchased a blood glucose monitor. It’s weird to be afraid of eating a whole apple. On the RKD you can have apple, but just a little bit and you have to eat it with some fat to keep the ratio.  It’s complicated. I love the benefits that are shown with the RKD but I dislike the reality of the lifestyle. On a very positive note, Dan sold our truck! We now have October’s immunotherapy shot paid for. Yay! You know what ISN’T fun? You get penalized by your insurance when you only have one car. It’s a good business model for the insurance companies because they want families to have all of their cars with the same company, but if you are a one car family you get zero discounts (unless you guys know of any companies that support single car families…please let me know), and you pay much more for the same service. Ugh. Man. Dang it. Just got interrupted by a phone call from my health insurance….

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Chlorotoxin

It’s been a busy several days. Rested for a bit, then headed up to Friday Harbor to attend a memorial for one of my classmates. Tough stuff. I made it home Saturday night, just in time for the arrival of my newest additional treatment. My parents arrived in Seattle at around midnight this Saturday. They had traveled to procure a treatment called chlorotoxin. They got it from a clinic, and I know some of you will think we’re crazy because there’s only anecdotal reports, but who cares. Why not try it! The worst thing that could happen would be a lowering of the inflammation in my body and at best it could cure me. There’s an actual protocol to follow, and please know that the clinic that they went to was incredibly thorough, wanting all of my pathology, radiation reports, blood work, among other stuff. Before my parents even flew out on their journey, the clinic in had reviewed all of my medical history. In fact, this clinic had the most thorough evaluation of my medical situation out of all my dealings with doctors. So yesterday morning I began my treatment journey with the chlorotoxin. It will last for three months. I have four times a day that I measure out 25 ml of my dilution (it’s suspended in distilled water), I hold the amount in my mouth, swishing it around under my tongue for one minute, then I swallow it. Also, four times a day I use a different dilution (much more concentrated). I lay on my back and suspend my head over the edge of the couch, using the camera app on my cell phone to direct the dropper, I release two drops of the diluted chlorotoxin liquid into each nostril. The first time I did the nasal…

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Unicorns

I’m home safe from my whirlwind trip to NYC for my shot. I’m pooped, and plan to rest for a few days, but I wanted to share this amazing video sent by two of my friends (random that they both sent it). I like to think I’m a happiness outlier, one of the weirdos that’s easily satisfied, or sees the good in most stuff. The thought that I may be that way makes me smile, so even if it’s not necessarily true, I already got some endorphins from the concept so I guess that’s something! Not that I’m so amazing, I just really enjoy being happy, and I’m very grateful that it seems to come pretty natural to me.  Hope it makes you laugh as it did for me.

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Tuesdays are my new favorite.

Just a little adorable picture to make you smile, curtesy of my sweet Annie.  Hope it makes you as happy as it makes me! I’m off in a couple of hours, so I’d better keep doing last minute laundry. Clearly, I’m delaying my chores. I don’t know how business travelers do this. I’m exhausted just thinking about this trip.  On a happy note, my blood glucose this morning was 76. I’m dropping back down to the target rate. Dan even cooked a few hard boiled eggs for me and packed celery along with cucumbers for snacks to keep me honest. It’s not the perfect keto ratios, but it’s better than dark chocolate covered almonds or quesadillas. 🙂 Ok, back to the grind. Enjoy your Tuesday!

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Shot Six

Well, I have to start all over with ketosis again. I had a bit of a bender. Sometimes the pressure to eat so perfectly is overwhelming. To avoid all sugar, even fruit, and severely limit vegetable intake is incredibly trying. Seyfried’s restrictions on diet, with glucose and ketones, are above and beyond restrictive. I try, and I fail, but I’ll try again.  The problem is that I can’t seem to keep in ketosis for long periods of time. After a few weeks my willpower disappears. I don’t know how to overcome my weakness. I wish it was simple. I wish I was better at this, stronger.  Tomorrow I fly to NYC for another shot. Today I’ll fast, tomorrow I’ll stick with the ketogenic diet, and hopefully, by Wednesday, shot day, I will be back in ketosis again. I know it’s important for me to be in ketosis during shot times. I need to deprive the tumor cells of food, to weaken them so that the virus shot can clean them up. That’s the whole point about being in ketosis, when you’re in ketosis you are starving the tumor of food. Oh well, what’s done is done. All I can do is try again.  Oddly, all I want to do is eat badly. My willpower is gone. Heaven help me. At times like this I wish I lived out in the country. Since I don’t drive, I’d be stuck at the mercy of our pantry/fridge which purposely has nothing fun.  The bender was absolutely worth it. Now the trick will be to stop. 🙂 A photo from the weekend, happy birthday to Jules! I’d better lock myself in the house…I’m  badly craving a chocolate chip cookie and coffee. No bueno. Is my willpower on vacation? Ugh.

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Doctor Help

I need some advice. It’s kind of laughable, but I don’t have a general practitioner, or an internist. I have had such bad luck with doctors, they don’t respect my research, and typically pooh-pooh my treatments/supplements/diets. I need a doctor for basic health, one that can monitor me, request blood work, and collaborate with my New York doctors. I’m looking for someone who is open minded who will respect me and will work as a teammate. If anyone has a great doctor in the Seattle area, I would be very grateful if you could give me their information.

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DCA

Good morning friends. I can’t believe next week is shot week again. Back to NYC for a quick 20 hours. Crazy! I’ve been so incredibly exhausted lately, too much summer fun with friends, and moving, and such. But the weather has been superb, and the sunshine has been intoxicating. It’s impossible to nap, and I’m only getting about 7 hours of sleep a night (on a good night). I know I need more sleep, that I’m still recovering from October’s brain surgery, but it’s hard to zonk out when life feels so good. Not to mention the sun zaps all energy, but it’s too hot to nap. Here’s my office for this morning. I’m hidden at a local cafe, behind a bamboo fence. Fun to change it up. I love living right in GL, able to walk a block to fun little spots. Since I don’t drive, it’s important for me to feel connected to the community. Note my editor, Emma My day is another, full of research. I’ve been looking into adding DCA into my supplements. Apparently, it can help the mitochondria of cancer cells start to function properly. The mitochondria is the guy in the cell that does several things including programing apoptosis (cell death). That’s the problem with cancer cells or damaged cells in general, they don’t want to die. DCA also helps break the process of glycolysis for cancer energy, among other things. There are a few supplements that you need to take along with the DCA, like thiamine, and alpha lipoic acid. I would need to be careful about caffeine because it can potentiate the effects, but I think I could be careful and figure it all out. I’ve been reading up on DCA for the past few weeks. It seems like a nice addition…

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Dirty Little Thief

I can not believe this, but someone stole our bicycle from behind our home. The new home is in a high foot traffic area, and honestly, I didn’t think much of it. But Danny and I put the bike behind our home, it was out of view, and some jerk took it.  Unless, of course, a friend took it to fix the two flat tires – but I have a feeling that isn’t the case. Dan had just grabbed the bike from his brother so that we could fix it up for me to use. I’ve only ridden a bike once in over three years because of the surgeries, and the seizures, and I was so excited to start back up. And in a blink it was gone. Dang it! Evil thief. Guess I don’t have to buy a basket for the front. I don’t throw this card out there much, but it’s pretty mean to steal a bike from a cancer patient. Even if they don’t know it at the time.  I keep picturing a tall, lanky dude on our bike cackling his head off as he wheels around Greenlake. Oh well. At least I’ve got my walking sticks to get me out.  Clearly we’re going to need to be really good about securing our things. Guess it’s a good lesson. 

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