Wednesday, September 27, 2017

The Foodie Returns

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?



24 comments :

  1. Oh wow..you are doing such an awesome job! I had to help my Dad with his diabetes after my Mom passed, but it wasn't so complex. I would think it difficult with children to feed. I am so happy to hear that you are enjoying cooking again! Our continued prayers are with you, and happy cooking for your precious family!!!!

    ReplyDelete
  2. You and Ed might be able to enjoy Lily's chocolate. It is sugar free, sweetened with Erythritol and Stevia. They make chocolate bars, plain and flavoured, and chocolate chips. I buy it at the health food store. You are all in my prayers. God bless!
    Marney

    ReplyDelete
  3. Praise the Lord that Ed & you are adjusting so well to the keto diet. I'm praying that the cancer cells will starve & die! God is so good & so gracious! God bless you all abundantly!

    ReplyDelete
  4. Gina I am so pleased you have your foodie back and that Ed is doing so well. I have a friend who has a son with melanoma and he is also on a strict diet and doing well when he wasn't supposed to make it to last Christmas. He also has children and is highly motivated to stick to the regime.

    ReplyDelete
  5. I have prayed and cried and thanked God for you and your family. I love reading your blog while I am at work. After 14 years of being a homemaker, I have gone back to work. I am so encouraged by your courage when it seems so challenging. You get up and keep going. In the midst of the pain, you weep I am sure, but you leave it at the feet of God Almighty knowing that He will provide so graciously and willing for all of our needs according to His riches in glory. You are an inspiration. I pray for strength, healing and hope for the future. I pray that you will continue to be encouraged as you endeavor to be the wife, mom and homemaker God has called you to be. I pray that the joy of the Lord will be your strength. Be blessed!
    Tara

    ReplyDelete
  6. Blessings to your dear sweet family! I think it is so wonderful that your doctors are encouraging the keto diet. I've been wanting to suggest something for a while but didn't want to confuse or add stress, however it sounds as if this might be compatible and even helpful if you need lots of fat. You might have come across this yourself already. It is part of the budwig cancer protocol. Flax oil and a fermented milk product. You could even use cultured cream! I have my family eat flax, kefir, and fruit smoothies as a preventative. I strongly encourage you to look into it and ask the people who direct his diet. I've been a lurker for years and am praying for a miraculous recovery! Love in Christ, Kim

    ReplyDelete
  7. I was wondering if you had ever tired Brazilion cheese bread? It's uses tapioca flour, cheese, milk, egg, salt. Here is a link to the recipe we use. http://www.simplyrecipes.com/recipes/easy_brazilian_cheese_bread/undefined
    I'm so very glad your family is doing well. My thoughts and prayers are with you, Ed and the children. Hugs, Gina.
    Alice

    ReplyDelete
  8. reading this reminded me of kirby's dad & his radical diet restrictions. he was so willing to skip the carbs including his favorites like apples if it meant possibly beating his cancer or at least prolonging his life. we'll never know if his special diet actually helped or not, but in the 2 yrs. after diagnosis until his death, he only had a few months that he really was very ill. i applaud you & ed for making this sacrifice even though it's difficult, & i pray that ed's cancer would be starved by Jesus' power, the awesome Creator! also, i heartily agree w/ the lily's choc. suggestion; it's amazing if you like dark choc. & you don't even miss the sugar! =)

    ReplyDelete
  9. Hi,I'd love to have you post some of your new recipes!(especially desserts:)) I'm not on a diet but enjoy experimenting with healthier foods. Blessings on your journey

    ReplyDelete
  10. Three years ago we put our sons on a similar diet, the GAPS diet. I felt many of the same emotions you shared here and I laughed as I read this post because I heard myself as I must have sounded! It is difficult but God has so so much to teach you in rich ways!! God bless you for your hard work!!

    ReplyDelete
  11. Gina, cooking for a bunch of children plus a terminally ill husband is a huge strain! I'm so grateful that the Lord has given the joy and delight back. I was just wondering what to make for supper and happened to check your blog. It is still work to cook for a family even with no food restrictions or guidelines.... You do such a good job of being honest in the midst of your intense struggle. Some one who was truly proud would not write that they badly wanted help with supper! I pray for your family, the decisions, the day by day struggle with fear and discouragement. May He be very near!

    ReplyDelete
  12. I don't believe in coincidences but it is odd that we were watching the 700 Club this afternoon and Dr. Don Colbert was on talking about the ketogenic diet! I had to check out his website and saw that he has a book on the subject. Since his practice combines Biblical principles and healthy eating, I may just have to get the book.

    But what I really wanted to say is that I'm glad the foodie is back and that Ed is getting such good care!

    I too would be interested in recipes as I'm sure your inventiveness in the kitchen will produce some outstanding and very edible meals and snacks!

    To hear so much about the ketogenic diet in one day seems to be a prod, don't you think?

    Hang in there, Gina, we're all still praying for Ed, you and your family!

    ReplyDelete
  13. I'm so sorry for what you and your family are going through. May everyone be touched by your story. Cancer rates are getting high,last count it's 4,600 daily in the US...

    ReplyDelete
  14. dear Gina, thank you for taking the time to tell us what's going on. I am amazed by your journey and am praying for you all. Bless you as you find your way in this diet and find other ways to fellowship (I agree - food is so central and for those without any restrictions, it's hard to understand what it feels like to avoid some foods).

    ReplyDelete
  15. The last time I checked, you did not have five pounds to lose, hon, so I hope you are sneaking some of Ed's high fat sauces and getting it back. :)

    This post was enlightening, fascinating, thought-provoking for me. I admire the energy and creativity you pour into embracing this new challenge. More, your joy in doing so and once again sharing food with Ed is beautiful. (I identify a little with the grouchiness of non-sharing times. It's hard!)

    Praying for your family. I look forward to every update, but's been a while since I clicked from email over to your blog, and your family photo on the header is so radiant. Hugs.

    ReplyDelete
  16. God bless you, Gina, and your cooking skills and your ability to make the best of a bad situation. Praying for Ed and you.

    ReplyDelete
  17. I certainly admire your creativity and perseverance! I tried a keto diet for a few weeks last spring, and failed miserably! God is with you all, as are our hugs and prayers for you and your family!

    ReplyDelete
  18. Hi Gina,MCT oil might be a good fat source for you. I use it a lot on salads, in drinks ect because it has almost no flavor. :) but it does make you feel full so that might be a problem. Also, if you check out Trim Healthy Momma, some of their baked goods might work. They allow up to 40 grams of carbs on an "e" meal, so you want to watch for that. But yes, I get it. Eatting this way is so hard! :)

    ReplyDelete
    Replies
    1. I haven't tried MCT oil yet but that is next on my list of things to try. I think it might work well for Ed.
      Gina

      Delete
  19. praying for your family. thank you for sharing your live with us.

    ReplyDelete
  20. Hi Gina,

    Can you tell me what kind of sweeteners you use for Ed? A friend has a son with cancer and I'd like to do some baking for him. Thank you, and I'm praying for you as you face the MRI results.

    ReplyDelete
  21. Thank you so much for you explanation of the diet! It really helped me understand why people say the ketogenic diet didn't have many 10 year cancer survivors which, if compared to a true cancer healing diet there are thousands of online testimonials that have been healthy for 10-20 years. We are on the GAPS diet and have seen allergies heal. I was struggling to understand the difference between the two diets but your post brought it out clearly. Both diets starve the cancer by eating no glucose or sugar. But that's only half of the truth. The other half of the truth is that we must flood our bodies with vitamins and nutrients (all the vegetables we can possibly cram in, and a large variety as well) to support our immune system, which in turn will fight the cancer. A vitamin deprived body cannot fight cancer. GAPS isn't designed for cancer necessarily, but I am highly interested in cancer diets and have been reading crisbeatcancer.com and the truth about cancer.com which have much information on cancer fighting food. I've also listened to their cancer seminars and I have taken copious notes. The top cancer - fighting foods (raw!) are broccoli sprouts (3 cups per day), cruciferous vegetables (broccoli, kale, Brussels sprouts, etc), garlic, onions, leeks, lemons, white button mushrooms, spinach, tumeric with cumin and black pepper (1t. a day of cumin has the same potency as a baby aspirin without the side effects; spicy food kills cancer!), and 60 oz of fresh carrot juice every day. The interesting thing is that if the cancer actually starts to die, the blood test will say there is many dead cancer cells in the blood, which can mean that the cancer is growing OR dying. Vitamin deficiency will keep him from becoming cancer free, but you have made an excellent start! I'm sure the ketogenic diet has helped him feel as well as he has! My grandpa felt good on chemo too, and we believe it was diet that caused that. You have been in my thoughts and prayers all summer!

    ReplyDelete
    Replies
    1. We all make the best decisions that we can based on the research we have and our particular situation. I wish Ed could eat more vegetables but it is impossible on a extremely low carb diet. For example: just one cup of carrot juice has 22 grams of carbs and 8 grams of sugar. Ed is consuming zero sugar and 10-15 carbs a DAY in order to give his cancer no glucose to live on. He is taking some supplements to help his vitamin deficiency. With his type of cancer, ten-year survival is so rare that it is considered a miracle. If God gives Ed even a few years we will give God the glory and not a diet.
      Gina

      Delete

I'm still learning how to be a joyful homemaker and I'd love to hear from you!

LinkWithin

Related Posts with Thumbnails