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 (derived from the townhouse community where we were living at the time). It's the diet I was on from Oct 2011 - April 2012. During that time my tumor did not grow. The majority of my diet was comprised of vegetables, then lean meats (organic, wild, grass fed), minimum amounts of dairy (grass fed, organic), nuts, no sweets, an apple or two a day, and green drink after green drink after green drink. I drank zero alcohol, and I ran almost every single day (some days twice), it was glorious. And just for the record, the Densmore Diet was restricted calorie, but I didn't care because the food was so good! And technically, the diet was restricted, but I didn't over analyze the calorie counting. I was an eye-baller, not a weigher.
It has been very hard to come to this conclusion, mainly because I've read all of Seyfried's research on the restricted ketogenic diet, and I know that the RKD has been proven to stop, slow and even reverse brain tumor growth. However I can't seem to stay on the diet I'm going to list all of the reasons why I'm reverting back to my old Densmore Diet:
1. After about 10 days on the RKD I start to get stomach cramps. I get black stool (nasty!), indicating irritation, and blood in my upper digestive tract. It's something that is easily eradicated with the ingestion of veggie carbs or legumes, but it's not fun. So I fall off the wagon to soothe the symptoms, then once I feel a little better I try and get back into ketosis, but inevitably it happens again. A constant cycle.
2. When my blood glucose hovers between 50-70 it causes massive cravings. Bad cravings. Not immediately, but after a several days. The most common one is for chocolate chip cookies, and eventually, I always give in. I end up yo-yoing. My body freaks out when my levels are that low, and the powerful urge to grab a cookie is just a survival mechanism. I never reach for an apple either, it's always the sugar packed baked goods, probably because they'll spike me back up the fastest.
3. It's really messed up to hate yourself for eating too much broccoli and kicking yourself out of ketosis. Trust me, it's happened to me many a time. It's disheartening. I end up feeling like I'm always on the verge of failing. Then I do fail, and with that I feel like it isn't just an isolated fail, but that I'M a complete failure.
3. The RKD makes me feel physically gross.
4. The RKD makes me feel like I'm constantly eating just to eat but there is no joy in it.
5. The RKD makes me feel fearful about every minute, every blood glucose reading, every food choice.
6. The RKD has taken away my cardio, and my weightlifting (spikes blood glucose too much). All I have been left with is walking (or maybe gentle yoga), which, as much as I try, I am not passionate about. Exercising has been a joy and a major connection between Danny and I, and I miss it. I miss the slogging (slow jogging) through the rain with Emma, of feeling the blush of my face, the forced deep breaths engulfing my lungs with life.
7. The RKD removed my joy of cooking because no matter what you do, the recipes are not delicious. (Not enough veggies!) Not to mention I don't have the energy to cook for me AND Danny so we end up eating separately. Different foods, different schedule. It's lame. Also, I cook and eat much healthier than Dan, but most of the time he's left to fend for himself and it's bad for his health.
8. No cancer performs exactly the same, no tumor behaves the same. There are people that have much outlived their diagnosis, some even for decades, and no two people have done the same exact thing, eaten the same exact diet, lived the same exact life.
9. I found my tumor by listening to my body. I asked for the MRI that found Hermie. Why would I keep fighting my body, who clearly HATES the RKD. Seriously, it's insanity. I'm trying to force something, and at a certain point you need to step back and assess your behavior and choices.
10. I am a healthy woman, and I want to live a long happy life, and the RKD makes me question my quality of life. A life without kale smoothies, sauteed brussels sprouts, unlimited garlic, and onions, and zucchini, and watercress salads, and apples, is no life at all.
11. The second you stop doing the RKD your tumor will quickly return (there is evidentiary proof in Seyfried's research). The diet is not a solution. It will not save you; it will not cure you. It's fabulous to aid in your treatment, to enhance efficacy, but it's never going to fix you alone.
12. I could go on further, but I think you're getting the gist...
I can still learn from my RKD experience, and clearly I want to do whatever I can to be healthy, have a healthy body, and brain with no tumor, but I also want to live. Really live. I want to be smart about my choices, and some may think I'm foolish, or that I'm giving up (don't worry, you can't say or think anything worse than what I've felt about myself) by not being on the restricted ketogenic diet, but we are all different, and I have to listen to my body. The wonderful thing is that I can always get back on the RKD. I have the books, the recipes, the measuring tools, and such. For now, I need to not just be alive, I want to feel alive. And if that means green smoothies, and salads, and crudites, and apples, then so be it. It's not like I'm baulking at avoiding alcohol or processed foods, I don't care so much about that stuff. If jogging, and veggies and some crunches and squats are what kills me, then it is what it is.
Every suggestion, every research paper, every non-invasive treatment, every supplement, the best diet, I wanted to do it all, but it's just not that simple. In fact, it's impossible. I'm doing the best that I can, and I'm going to forgive myself for not being able to master the RKD. In life I'm really trying to be kind to others, and that includes myself. The relief of allowing myself vegetables and exercise has already lifted my soul. I can feel my body relax, and that is worth quite a lot!
My new favorite green smoothie...
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| Kale, Parsley, Ginger, English Cucumber, Coconut Water, Lemon, Splash of Pineapple Juice |
