Wednesday, March 27, 2013

Back on Keto

Hi, I'm back among the living! I'm still exhausted, and trying to keep up, but no big deal.

The trip was great. Libbey and I flew in and went directly to the hotel. We put on our jammies and climbed into bed. We ordered food (thanks Nate & Miriam for the gift certificate) and rested. The next morning, we woke around noon (I think). We lounged around, then made our way out into the beautiful NYC streets. We stopped into my favorite little juice bar for a shot and juice and crossed the street to the appointment. We met with Dr NYC at 3:45 pm. I talked to him about the aura the morning after last month's shot and he was excited. He said that means the treatment is likely working. Sweet! I told him about the seizure that occurred a few weeks back, while I was sleeping - the one Danny watched - and he stopped what he was doing, swiveled his chair and softly said, "Because of stress?" I affirmed, and he brought up (for the second time in our meetings) the ketogenic diet. For those of you who have long read this blog, you're aware that I've tried to do the ketogenic diet, but it is so incredibly hard. I have never been able to stay on it for long periods of time. Anyway, Dr NYC and I revisited the concept because of its' doubled effect on astrocytomas and seizures.

After the shot, Libbey and I went back to the hotel and climbed back into bed. We watched TV and played Words With Friends on our phones in our respective my rush I forgot to pack my game board. Oops. And, yes, WWF is basically scrabble :)

I handled the achy-ness just fine. It was definitely necessary to be in bed. I didn't sleep well with the flu-like symptoms. It was nothing compared to the flight the next day though. If I had not been in a crowded plane, but instead home alone, I would have been spurting expletives under my breath and wincing for the entire 5+ hours. The only thing that helped was sparkling water over ice. The bubbles are distracting, and somehow always make me in turn, feel more bubbly. So if I don't feel well, the happy bubbles can take me from down in the dumps into a normal-ish place. I strongly believe that distractions are the best pain reliever. And, after the pain during the neurosurgical floor at UCLA, for me there is nothing more painful than brain surgery. Everything else is just effing annoying. The pain in my brain was excruciating. Pins and needles that had been heated over a fire, pang after pang, burn after burn. But with each continuing moment, I knew that the pain was coming from a place of healing. At one point it was hard for me to hold back tears, good thing Jet Blue has cable TV. Another distraction. No seizures though, not even an aura. The trip was a massive success.

Since getting home I have reinstituted the ketogenic diet as my lifestyle choice. I am hoping it will quell any brain tumor growth, and also eradicate my seizures. There is a good deal about the ketogenic diet slowing, stopping, and even shrinking astrocytomas. Crazy! And (I'm simplifying this), the diet can cause about 50% of seizure sufferers to become seizure free. That sounds good, too, doesn't it!

It is highly restrictive, but I've been doing it for five days so far, and I've been consistently in ketosis for four of them (I urinate on keto sticks to check my levels). If you're in ketosis, it means that your body is burning fat from your body as fuel. (If your levels get too high you'll burn muscle - that's why you have to eat so much fat.) It's very complicated, and that's the main reason why I haven't blogged. I've been researching for hours upon hours. I'm so intrigued by this concept, and I've learned so much! I have been researching the keto concept ever since I was diagnosed, but I always want to learn more. It has been very helpful learning from the diabetics out there on the internet (they use keto sticks to check their ketone levels to make sure they're okay). Also, weightlifters use the ketone concept to burn fat and gain muscle.

Here's the daily breakdown:
Carbs 20 grams
Protein 100 grams
Fat 140 grams

It's all based on my body weight, height, build, activity level, age, gender, and several other factors. For those who aren't familiar, I can imagine the diet sounds crazy. And it did to me too, but this is not junk science. Doctors have been using this diet (or a variation) for decades. It was first published in the 1920's to treat epilepsy. Over a month ago I stopped drinking coffee, along with alcohol, not to mention refined sugar. It has not been too difficult to eliminate my carbs. I've even gotten pretty good at playing with my random recipes. I feel great, too!

I'm exhausted, so I'm headed to bed to read and hopefully sleep through the night. Dan's working nights for the next week or two, so our systems are completely off. I'm not being a very good sleeper :) Dan sleeps during the day, and I try to nap with him, or live quiet as a turtle.

Sweet dreams my friends. Here are two of my favorite pictures (not because they're pretty - they're definitely not - but I love what they signify to me).

Snow drifting down on Seattle in big fat fluffy flakes the morning after I arrived home. It felt like the weather was representing what was happening in my brain with the virus penetrating my tumor bed, melting any residual tumor with sneaky little virus cells.

The same day, three hours later. Sunshine.

The very next morning, for the first time this year (that I had seen), the beloved turtles were awake at Green Lake. They give me such peace and happiness each time I see them sunbathing. They always make me feel so alive and grateful.


  1. Welcome back Jess! We are so glad the trip was such a success (minus the painful and yukky long flight home)and that you took it easy!

    Also, you are a complete rock star as you again navigate the ketogenic diet! Amazing Jess. Thank you for filling us with so much positivity and love. :)

    Sending light, love and strength to you always. Oh yeah...and REST! :)

    Big love from NYC!

    Steph and John xoxo

    P.S. Love the little turtle bodies by the way. Glad they filled you with sunshine that day!

  2. Beautiful!! Thank you for sharing always!


  3. I know how following a different diet can be hard. I switched my diet for medical reasons, and can't say it was easy or fun. What I can say, is mission acomplished! It did the trick (complete surprise!) even though I doubted it could. I just had to rethink what pleasure is, food. or health, my choice, Eventually I came to believe, nothing feels better then feeling good!!! I am now used to "the diet" or as I say a new way of living, and can't imagine going back. Life is full of adjustments, so just one more big one on my list checked off. I love your way of phrasing when you say you are navigating your way through things, right on!!! Keep on this path and I know you will be rewarded with what that old song says "feelin good, and I know that I should now, so good, so good!!!!!!!


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