One of the silver linings of my brain cancer has been that it caused me to become more educated and focused on nutrition. Even though I still have cancer, in some ways I feel much better than I have in years. I have lost about 30 pounds of fat, and a lot of people have been intrigued by my transformation. (Don't worry, it's intentional and not attributable to my cancer).
My nutritional journey started several months before I was diagnosed. Last summer on the beach I hated how I looked. My weight hit an all-time high. I had gained about 30 pounds since marrying Jordan in 2004. My brother had also been packing on the pounds, so he and I had a contest to see who could lose the most weight. We would weigh in each week. I decided to follow my low-fat version of my dad's low carb diet that put his type 2 diabetes into remission. I gave it 60 days. Over that time, I lost about 15 pounds. It felt good to lose the weight, but I missed breads, cereal, sugar, ice cream, etc. After the 60 days in August and September I gradually fell back into my old diet.
Around Thanksgiving, Jordan made me a doctor's appointment because it had been several years since I had had a physical. Ironically, I had a lump on my arm that she was worried could be cancerous. The lump was no big deal, but the comprehensive lipid panel from
HDL Labs that my doctor ordered had several red flags. He was worried about my elevated cholesterol and that I showed strong signs of insulin resistance. According to the tests, I was in the 90th percentile for insulin resistance, which is an indicator that I was on the path to diabetes. He prescribed me Lipitor. I was not excited about taking a statin, but I eventually picked it up at the pharmacy and started taking it. Other than that, I didn't really make any changes to my diet. After all, the holidays were coming up, and I didn't want to limit myself during the inevitable barrage of goodies.
At the end of January, I was hospitalized with what turned out to be a grade IV primary brain tumor. In the weeks that followed, we met with several cancer doctors. I also met with a nutritionist at my regular doctor's office. He advised me to avoid all animal products and to go vegan if I could. I thought that I would try to limit meats but didn't fully commit to his suggested plan. I still liked milk and ice cream. We also bought and received a good amount of sugary comfort food. I gorged myself on ice cream sandwiches, brownies and popcorn. I ate and ate with reckless abandon to relieve my stress.
Shortly, I was slightly above my all-time high weight. About this time, a couple of things happened. Some very wise people suggested I cut out sugar. Cancer loves sugar they said. Also, Jordan ordered a couple books based on the recommendation of someone who's husband had been battling glioblastoma. Both these books took a dim view of sugar as well. The Grain Brain by David Perlmutter suggested eliminating all wheat, and Life Over Cancer suggested a "healthy" low-fat diet with lots of veggies. I read most of Life Over Cancer and found it very interesting.
Around this time, I switched my care from the Mayo Clinic to Barrow Neurological Institute when the neurosurgeon at Mayo told us that he couldn't safely remove the tumor. Interestingly, at Barrow, they were doing a clinical trial on the ketogenic diet as an additional therapy for newly diagnosed glioblastoma. All nutrients in food are either protein, fat, or carbohydrate. The typical American diet is primarily carbohydrate. The ketogenic diet, in contrast, focuses on eating mostly fat rather than protein and/or carbohydrates. The diet had been used for years to help children with epilepsy who wouldn't respond to seizure medication. Through the work of Dr. Thomas Seyfried and others,
researchers have theorized that the ketogenic diet may also help cancer patients. Preliminary lab results at Barrow and other places have been
promising. Human clinical trials are just now beginning.
I didn't enroll in the clinical trial for the ketogenic diet because I was already enrolled in a trial that used an alternative radiation therapy. But the oncology dietitian graciously worked with me "off study" on the ketogenic diet. This involved checking my blood sugar and blood ketones daily and weighing everything I ate down to the gram. The idea is to put your body into a state of "ketosis" so that your cells are metabolizing ketones rather than glucose. It is believed that cancer cells are unable to metabolize ketones and therefore become weakened, making them more susceptible to radiation and chemo. The diet was very hard to follow. For every gram of carbohydrate or protein, I had to eat four grams of fat. My favorite meal was half a sausage link, one scrambled egg fried in two tablespoons of butter, and a few berries in 3/4 cup of heavy cream.
As is my tendency, I don't just blindly do things to my body. I ended up reading every single thing I could about the ketogenic diet and cancer. I also started reading everything I could about a low carb diet and nutrition in general. As I was learning, my body was changing. Pounds of fat were melting away. Most surprisingly, I learned that nutrition is anything but settled. It's extremely difficult to study because there are so many variables, and what people eat is so hard and expensive to track. For every nutritional principle, you can find someone who says the opposite. Complicating matters is the fact that doctors and nutritionists have to make a living. They sell books, supplements, get research grants from big food conglomerates with vested interests, etc. Further complicating matters, nutrition is a little bit like religion for the various factions. There are vegans, vegetarians, paleos,anti-glutens, etc.
Based on my own study and experience, I have ended up being persuaded by the low carb diet. There are many different variations and names (e.g., Banting, Atkins, Paleo, modified Atkins, etc.) for diets that limit carbohydrates. The ketogenic diet is one branch of the low carb philosophy. I no longer follow the 4:1 ketogenic diet (described above) where I weigh all my food, but I continue avoiding sugar and trying to keep carbs very low, around 25-50 grams per day. I also look for more natural foods where possible like grass-fed meat and local vegetables. At the end of the day, I have lost 30 lbs of fat and feel as good as a person can on chemo. My energy is more level, and I don't get the horrible carb cravings that I used to get. I no longer engage in binge eating. I stop when I'm full. I used to hate seeing pictures of my ever chubbying face. Now I actually don't mind when Jordan snaps a picture of me. T-shirts and pants fit better, etc., etc.
In many ways I'm sad that it took cancer to get me to really dig in and learn about nutrition. I think had I known pre-cancer what I know now, I would have permanently changed my diet to what I eat now. Even when I did my low carb experiment last fall, I wasn't eating right because I thought that I had to avoid fat. It turns out that fat might not be so bad after all and that sugar and refined carbs are the real culprits. Here's a
video about the recent Time Magazine cover story on fat. Without the fat, no wonder I felt starved and went back to my high carb comfort foods.
This time around, I have no desire to go back to my high carb diet and don't have carb cravings. The ketogenic diet taught me that fat is OK and does not cause weight gain. Here's an example of what I might eat in a day on my current diet: Breakfast: four strips of bacon with 2-3 pastured, Omega-3 eggs fried in the bacon grease. Lunch: tuna salad "sandwich" (a green pepper stuffed with left over fresh, wild-caught tuna steak made into tuna salad) and macadamia nuts. Dinner: small rib-eye steak and a big green leafy salad. My unhealthy indulgences are an occasional diet soda and sugar-free jello. I also enjoy 85% cacao or above chocolate, which I couldn't stand before I stopped eating sugar because it was too bitter.
If anyone is interested, below are some of the books, movies and websites that have helped me understand why I felt so good and lost so much weight on a low carb diet.
Books:
The Big Fat Surprise by Nina Teicholz. This book was fascinating in that it pulls back the curtain on how we arrived at all the fluctuating nutritional recommendations we've lived with during my lifetime. The food pyramid used to be nutritional gospel. Where did it come from, and where did it go? Why were people advocating margarine over butter? Where did trans fats come from, and where did they go?
Websites:
http://www.cavemandoctor.com/ This blog is run by a cancer doctor who adheres to the "paleo" lifestyle. I was drawn to it because he is also studying the ketogenic diet with his brain cancer patients. I find his website and podcasts (done with a personal trainer) interesting and informative even though I don't consider myself a "paleo."
http://eatingacademy.com/start-here This blog is interesting because its author is on a quest through his foundation to come up with scientific answers to the seemingly impossible nutritional questions. Here's his TED talk on obesity that describes why he does what he does.
http://www.marksdailyapple.com/ This guy is also a "paleo." The great thing about this site is that he posts several times a week. There are all kinds of tidbits and food ideas. Like the caveman doctor, I think this is interesting but don't take it as gospel. One of my favorite features are the success stories he posts eachFriday. It's fun because I can identify with a lot of the people who email their stories.
Movies:
Fat Head This is a funny, easy-to-understand counterpoint to Morgan Spurlock's Supersize Me, in which Spurlock blamed fast food companies for America's obesity crisis. It's simplistic but a good place to start if you're not into scientific treatises.
Cereal Killer This movie chronicles a South African man's nutritional journey. It's another one-month diet experiment with cool accents.
Although I'm really enjoying my new way of eating, it does have three downsides that come to mind.
First, it can be expensive. If you don't have a farm, high quality, whole fatty foods are more expensive than cheap, processed, high-carb foods. That's a fact. That said, good nutrition is worth more than some of the other things I would have spent the money on.
Second, it requires extra planning. Most convenience food in stores is not compatible with eating low-carb, whole foods. Nor is there a lot of variety in fast food (you can only have so many bunless burgers). Unless you have time to buy good food and cook it, following the diet can be very hard. Jordan has been a supportive saint throughout all my experimentation and food weirdness. The girls have followed her lead and also been very supportive. Jordan and the kids don't follow my diet, but they have changed the way that they eat. It's a whole family effort for sure.
Third, it's very contrary to societal norms. If being Mormon and turning down alcohol and coffee is hard, it's a walk in the park compared to being Mormon and turning down cookies and ice cream. But seriously, no one wants to be "that person" who has weird, incomprehensible dietary restrictions. We share food and drink in society as a way to bond.
At the end of the day, I've decided that feeling well, losing weight, and hopefully making my cancer treatments more effective far outweigh the cons. After six weeks on the ketogenic diet, I had my doctor do another set of comprehensive labs. The results were mixed but a net positive. My insulin resistance went from the 90th percentile (bad) to the 50th percentile. My blood insulin, glucose and many of the inflammation markers greatly improved as well. But my cholesterol did go up, which isn't necessarily bad and is more academic given my brain cancer. I'm looking forward to my next tests to see where it goes from here.
