Evolution Of My Brain Tumor Diet

I have to clear things up...it's going to be a little bit of a tangent, but hang with me.

From the beginning of this diagnosis I have been searching, step by step, to overcome each obstacle. Once I realized, through research, that diet was linked to cancer (duh, how did I not see that), I started changing my eating habits. I reviewed the nutritional information on all of the packages in my life and started kicking out high fructose corn syrup. I stopped drinking diet pop, all energy drinks, and things with obvious chemicals.

Then, I found the articles about the Restricted Keto Cal diet slowing the growth of brain tumors and I learned about the restriction of carbohydrates (all types simple and complex). But the truth is that I can't sustain an extremely low carb diet. When I tried, I found myself clipping right along carbohydrate free, then I would attend a big party with friends and I'd be the girl taking a bite of all of the cupcakes. Every single one. You laugh, but that honestly happened. In my defense, everyone had eaten at least one (I think).

So, between my April MRI and my seizure (which occurred just before my scheduled June 19 MRI) I had quit on my diet. I gave the diet about 50% of my effort. I've never been one to eat fast food, I don't like chips very much, I love vegetables and healthy food, but I also adore artisan bread and glorious handcrafted cheeses. I cherish homemade sweets, honestly, I love them all, lemony, chewy, chocolaty, nutty, I'll take one of each if someone's offering. I took the time between MRIs to celebrate a freedom from my knowledge of food. I ran as much as I wanted, I ate as much as I needed to run successfully, at one point accomplishing over a 10 mile run with an 8ish minute mile. It was beautiful and I felt safe in my choices. I ate ice cream and didn't feel bad. I drank delicious local red wine, I laughed with friends, and felt like a completely normal 30 year old woman.

That all changed when we received the MRI scans at the radiation oncologist's office. I sincerely believed I wouldn't have tumor growth for years. I had decided that I would probably have at least 3-4 years before we would see that lousy white mass growing. I don't know how I picked those numbers, I guess I was just feeling so great. I was drunk with power over my future.

When I saw the MRI scans it was literally a stinging slap to my face. I can still feel it, the pain is continuously palpable. I won't let it defeat me, but it sure as hell makes it easier to be healthy. From the moment of the MRI I went on a logic kick. My body tells me that it wants whole foods. It wants veggies, lots of them, all colors all sizes, the weirder the better. My body wants fun fruits like deep purple berries and apples, it wants watermelon and cantaloupe, tropical fruits too but that's not Wenatchee's thing. My crazy little body wants salmon and chicken and sometimes steak. I'm not eating bread, but my body has definitely mentioned an IPA. Weird. As a treat at a friend's house, instead of biting off all the cupcakes (one more point, they were all organic ingredient cupcakes made from scratch...ok, I'm rationalizing), my goal is to eat some cheese or have a glass or two of wine. I'm too scared to do the measly 50%, I have to do at least 90%. This transition is still hard, even though I've had the fear slapped into me. In fact, I can not have anything off my diet in the house. I can't say 'no' to myself. Zero self control. It helps that I can't drive and I've cut my social engagements by at least 75%. As an odd note, I've already lost 8lbs and I'm eating more than ever. I hadn't seen 146 in awhile.

Thanks to everyone around me. It's nice to have people that are passionate to help me succeed. My family and friends help provide fantastic foods when I get the chance to visit. If I can slow this tumor down by eating specific foods, I would love to sass my family and friends for decades to come! I'm sure I'll botch my diet a few times before the next MRI, but my goal is to surprise the doctors and have them looking in awe at a shrinking tumor. I've heard crazy stories about such things, but I also know that if there was a cure all that would shrink brain tumors, all of us patients would mortgage everything in reach to get it. As far as I've seen, there is no easy answer. It's food, it's exercise, it's genes and it's crazy stuff like cell phones (?), and not in that particular order. Who knows. For now, I'll listen to my body and see what happens. Cheers to sassing you all for decades to come!

Blog Comments

I would like to mention that I absolutely love all of the comments I receive. Sometimes, people have questions, and I forget to answer them in the blog posts. I do not have a way to contact people that leave comments, there's no link to an email address. So sometimes, things fall between the cracks. I received a comment yesterday or the day before (days have a horrible way of blending), and I want to address the comment right now.....

To Jessica C, I am so incredibly sorry about your oligodendroglioma growing back. I don't know if you're headed for radiation now, or what you're planning on doing as your next step but I would love to hear about it if you have the time and energy (jessoldwyn@hotmail.com). Brain tumors suck.

The information that I received about the restricted ketocal/ketone diet was a basic ratio of 4:1:1 fat:protein:carbohydrate. There is a specific computer program that epilepsy nutritionist doctors use. I recommend finding an epilepsy doctor that specializes in the keto cal diet, you can then work the caloric restriction into the computer system. It can factor your height, weight, activity level, etc. According to my doctors it is an all or nothing, highly restrictive system. They have a specialist at the University of Washington (where I receive most of my care). I'm not sure where you live, or what hospitals you have available in your area, but I opted out of the highly restricted diet. I didn't want to waste the time of the specialist. I was using the basic concept of the 4:1:1 and restriction of 35% cut of calories. The whole point is to reduce glucose and all fuel. It's very hard to maintain and it was too hard for me to run which I use as a stress reliever. So, I stopped trying to do the restricted keto.

My main diet at this moment is the removal of simple carbs, and simple sugars. I eat all vegetables (I don't eat root tubers), all fruits (but I keep the quantities of fruit to  2-3 servings a day tops), I eat mostly lean meats like salmon, tuna, shell fish, chicken and such. I do eat red meat, but it's just a day or maybe two a week. The majority of my diet is vegetables. My mom found a brassica tea that contains Sulforaphane Glucosinolate which is a very powerful antioxidant found in recent studies to slow the growth of and reverse the damage from glioma brain tumors. Anyway, it's really late and I'm going to be in trouble for not being in bed at this late hour. I have little spies that make sure I get enough sleep, and I think one of the ways is the time counter on the blog posts.

I'll ask for Danny's medical research stuff, the links and everything and add them to my blog so that all visitors to this blog can have the same information that we've been fortunate to find.

If there's anything I could recommend at the danger of sounding completely arrogant, always talk on speaker phone when using your cell, eat several servings of broccoli, all cabbages, cauliflower, brussels sprouts, and broccoli sprouts a day (pick one or two a day). Eat as many mushrooms as you can, especially shiitake, and maitake (maitake has been shown to pull the toxins from brain tumors and slow or stop brain tumor growth). Avoid all refined sugar and refined carbs. I'm sure you already know all of that stuff though, so please forgive me if I sound like a bossy idiot. I know first hand how hard it is to fill a day with the brassica family and billions of mushrooms, but hey, anything we do is better than nothing.

I do hope you email - I'm sometimes as bad as a week or two late on responses, but I respond none the less. Stress is a devil, so no worries about an email, I just hope I can help you in any further way possible.

I'll be thinking of you when I lay in bed trying to sleep (it's not creepy, it just helps me unwind....that was supposed to make you laugh) wishing all kinds of fun things for you in your life. Most of all, I can tell you right now, I hope you sleep soundly, and awake refreshed. Tumors are stupid. Let's beat this.