My foodie came back.
And I didn't know it was gone until it returned.
In the past I've enjoyed experimenting with recipes, learning to make new recipes, and practicing creativity in the kitchen. But when Ed was so sick in May, choosing even a simple menu felt impossible. Ed's intense headaches caused (we know now) by his brain tumor, caused severe nausea and vomiting. He lost fifteen pounds in a few days (and he was already thin.) I could hardly choke down food myself and dropped five pounds. But my children needed to eat even if Ed and I couldn't. I remember wishing that someone would bring us supper, but of course I was far too proud ask.
I muddled through and a couple days later the church prayer chain buzzed with the news that Ed was diagnosed with a brain tumor. Immediately our closest church neighbor brought our favorite poppy seed chicken casserole, Ed's sister dropped by with a box of yummy goodies, and another friend brought her amazing cinnamon rolls and chicken potpies. From then on the casseroles and boxes of cookies walked through the door so fast that I stacked them in the freezer. What a blessing to not have to think of meal prep in that next month of endless doctor appointments.
Three weeks after Ed's surgery, he decided to join a clinical trial testing the effect of the ketogenic diet on glioblastoma. The thought of preparing food for a radical diet overwhelmed me though I wanted to support Ed. Then we found that the study was providing all the meals in order to make the diet more accessible. What a relief.
The meals the doctor provided were frozen and all Ed needed to do was thaw and reheat them. After the first week when Ed's body adjusted to no sugar, he felt well on the ketogenic diet. But after a few weeks, he was weary of eating frozen/reheated food. I think maybe if it had been winter, he wouldn't have minded. But this was summer and in our garden was fresh spinach, kale, and broccoli. He longed to eat fresh salads and raw veggies. So Ed made the decision to continue the ketogenic diet but to prepare our own food.
The ketogenic diet is a low carb, high fat diet. If you google ketogenic you'll find that it is presently a very popular diet for weight loss. There are oodles of resources online on the keto diet. But we quickly found that most of the information would not work for Ed without adapting.
Ed is on an extreme version of the keto diet. He isn't doing keto for weight loss (though that was a side effect) but for medical/therapeutic purpose. In addition, he was significantly restricting his calories to result in a fasting diet. There is very little human research done on brain cancer and diet, but we do know that cancer feeds on sugar. When sugar/glucose is eliminated from the diet, cells can burn fat/ketones for energy. The theory is that cancer cells do not have the ability to make this switch. The goal of the ketogenic diet for brain cancer is that the cancer cells will starve, weaken, and die because of lack of fuel.
In the mice studies that have been done, the best results have been from significantly restricting not just glucose, but protein and calories as well. So the goal of Ed's doctor is to give Ed only enough calories to keep him from losing too much weight and give him needed to energy to function, but have no spare calories or protein that could convert into fuel for his cancer.
Ed has always been thin. I cooked for him for fifteen years, and thought I was doing a good job, but he never gained a pound. While we ate reasonable healthy, we still loved our desserts and consumed a ridiculous amount of Turkey Hill ice cream every summer. Never in his life had Ed went on a diet or counted calories. So we were in for a big change.
I was determined to learn to cook for Ed since he desired fresh-cooked food, even though it looked overwhelming. The therapeutic keto diet requires exact measurement of ingredients and concise balance of fats, protein, and carbs. Ed's goal was a 3:1 ratio of fat to combined protein and net carbs. In other words 3 fat grams to the combined number of protein and net carb grams. And ideally he would increase that ratio to 4:1. His goal was to have less than 20 net carbs a day, ideally only 10. And he tries to keep his calorie intake to about 2,000.
That is a daunting list. A 3:1 or 4:1 ratio means that everything Ed ate had to be swimming in fat. (Which usually means yummy. Think rich sauces and dips.) It also means he can eat very few vegetables. He eats mostly low-carb veggies such as spinach, celery, broccoli, cauliflower, and cabbage. He takes supplement to help with some of the vitamin deficiencies. But the fact is, when you know you have an aggressive cancer in your skull, and you think you have even a small chance of slowing it down, a vitamin deficiency doesn't seem like a big deal. To put it bluntly, if you'll be dead in a few months if you don't do something, you don't worry about losing your teeth or eyesight thirty years from now.
I stocked up on carb free fats such as heavy whipping cream, mayonnaise, mascarpone cheese, coconut oil, and olive oil. Ed had always drank his coffee black, but now he poured in the cream. I also bought lots of nuts such as pecans, brazil nuts, and macadamia nuts plus flours such as almond flour and coconut flour.
At first I kept it very basic. What could I add to a fried egg to make the right ratios? What kind of dip or dressing could I make so that Ed could eat with raw broccoli, cauliflower, and spinach? Could I make pancakes with almond flour? Ed didn't have much variety in those first weeks. But slowly I tackled new foods and came up with more options.
Such as a replacement for bread with his burger.
I began obsessing over every label. My digital scales was used many times a day as I weighed his food by the gram to figure exact ratios. We made mistakes (and still do) which was quickly reflected by testing. At first the doctor had Ed checking his blood ketone and glucose levels every morning and evening with a finger prick test that diabetics use. The study provides all the strips for Ed and the ketone strips are expensive so now Ed only checks them twice a week and uses ketone urine strip tests morning and evening. Once a month or so the doctor orders thorough blood work. There are some serious side effects that are possible with an extreme diet like this and we are grateful for the support of doctors who understand the diet. I wouldn't recommend doing an extreme version of the keto diet without a doctor's oversight.
For cooking keto I found the most helpful information online on sites such as the
Charlie Foundation that use the ketogenic diet for therapy for children with epilepsy. Our doctor recommended the Keto Cookbook written by a mom of an epileptic child that was hugely helpful because every recipe is a 4:1 ratio. Suddenly I had far more options.
And little by little I found I was having fun. Yes! The foodie had returned. I could enjoy being in the kitchen again. I began to freeze some meals so I didn't have to be always worrying about what he would eat at the next meal. I found shortcuts, like serving Ed the same meat that the rest of the family ate and adding a high fat side dish.
And best of all, once I got the basics down, I could enjoy making snacks and desserts that were compatible with the keto diet. Ed is so grateful for any of my attempts and willing to try new things that it truly does make it fun for the cook. One of the things he really enjoyed was iced coffee. With whipping cream, de-caf coffee, cocoa powder, and stevia I could make a yummy treat that helped him forget about ice cream.
We don't know if this diet is reducing Ed's cancer, but we are grateful that he feels so well. Maybe the diet is contributing to his good energy levels this summer.
Anyone who has done a special diet knows that the worse part is eating away from home. I never realized how many meals we eat away in the summer. Every weekend we had a picnic or reunion or a fellowship meal. Or maybe all three! We usually brought food for Ed as sometimes there was nearly nothing that he could have eaten. Potato salad, iced tea, baked beans, corn-on-the-cob, fried chicken, watermelon, and those luscious dessert - none could Ed eat. On the other hand, often he could join a picnic with only a few adjustments. He'd skip the roll and wrap his burger in lettuce. Grilled chicken, lettuce salad, and raw veggies could be enjoyed if he added extra mayo and sugar-free dressing. Our families went the second mile in preparing menus that Ed could enjoy at family picnics. He has just learned to put the blinders on when walking past the dessert table at fellowship meals.
Last week, when we ended up with an emergency trip to Hershey with our son, I wasn't sure how Ed would stay on his diet. When Ed stopped by our house for a change of clothes, he grabbed some his keto food out of the freezer and threw them into an ice chest. That gave him several meals and a bunch of snacks that we knew were okay. For the remaining meals, Ed picked through the cafeteria and came up with several good options such as a scrambled egg and bacon with a topping of mayonnaise. We decided that we'd do as good as we could and not stress about it. And when we got home two days later and Ed was able to test his ketone level, he was just fine.
I've learned a lot this summer about food. I've found out that even though I'm super thin, I still crave food too much. I don't want to admit how grumpy I have been this summer that I couldn't share my favorite foods with Ed. I didn't want to make Ed's diet restrictions any harder than necessary so I cut out that bowl of ice cream after working in the garden or the shared chocolate after the children went to bed. Ed always raved over my homemade bread and it was no fun to make bread he couldn't eat. Food is the way we celebrate, fellowship, and bond. Take it away, and, well, I felt like whining.
But I know that Ed is doing this diet for me. If Ed was single, he would still desire to live, but I'm not sure he'd be making any huge effort to stay out of heaven. But Ed wants to live for the sake of his family and diet is part of that effort.
And I'm so glad that my foodie has returned to make cooking fun again.
I tried to answer the questions we've been asked about the ketogenic diet. Feel free to ask if I didn't hit your question. For more information about the ketogenic diet and brain cancer here are some links.
Charlie Foundation
Ketogenic Resources for cancer
KetoNutrition - huge list of resources
Can a Keto Diet Treat Brain Cancer?
