Ketosis-bound

I have mentioned the ketogenic diet that I have been on and how labor intensive it is. I should probably share some more details about it and why we are doing it.

As far as I understand, our bodies convert carbohydrates to glucose which is then transported around the body and is particularly important in fueling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures.[1]

What is the Ketogenic diet?

The Ketogenic diet is primarily a medical diet for children with difficult to control seizures. The diet is high in fat, moderate in protein and low in carbohydrate. Fresh fruits and vegetables, fresh prepared meat, poultry and fish, heavy cream, butter and vegetable oils are staples in the diet. All foods must be carefully prepared and weighed according to a person’s individual diet prescription. The Ketogenic diet is inadequate in many micronutrients and must be enhanced with appropriate vitamin and mineral supplements.

So I’m not a child with epilepsy — why am I doing this diet?

Tina an I have heard enough anecdotal evidence to convince us that it might be worthwhile. Maybe it will help with my seizures (if I am having seizures (it’s hard to tell sometimes). Maybe it will give me more energy. It is going to reduce the size of my tumor (that is not fact, just my positive thinking. And it is not out of the realm of possibility). We are consulting with one of the dietitians who is intimately involved in how the diet works and should be managed.

What’s involved?

MeasuringOn a high-level, the dietician has created customized meals for us to prepare. Every ingredient has to be weighed. Tina spends a lot of time preparing and cooking.

Testing

We have to monitor my glucose levels daily and we check ketones daily as well as body weight.

breakfast

Breakfast today was eggs with Hollandaise sauce and raspberries with fresh whipped cream.

What are the meals like?

I think they have been delicious. Some of the ingredients are not what you would consider to be part of a healthy diet because of all the fat and oil. For example, one dish is fish, like halibut topped with a spread of mayonnaise and parmesan cheese, then broiled. It’s delicious. Lunch and dinner are almost always served with a fresh salad with a yummy dressing of olive oil, flaxseed oil and balsamic vinegar. Most meals end up taking about an hour to prepare.

Has It Been Worth the Effort So Far?

Tina and I agree that the answer is “Yes.” I wake rested and sometimes early. Morning headaches have decreased in frequency and intensity. My strength and energy are improving. I haven’t been falling as often.(Yes, sometimes I just fall. Actually it’s more like, I’m standing or making my way to another room, my legs weaken, I get a little lite-headed and know I better find a spot to sit or lie down, but in the process of me trying to process all that information, legs give out). It’s sad, hard for me to understand that I can’t maintain enough strength to lower myself down to safety. It’s scary for Tina of course.

What Else Are We Doing?

Not too much. Because the last MRI showed slight tumor growth, we discontinued taking the chemo (Lomustine). We are still waiting to hear whether I qualify for compassionate use of CDX-110, but we are no longer excited about that option and would probabley decline if it is offered, but that remains to be seen.

What Else is Going on?

keto-approved chocolat cheesecake dessert wasn't that great but I appreciate the effort my wiwtr put into mqking it.

keto-approved chocolate cheesecake dessert wasn’t that great but I appreciate the effort my sister put into making it.

May 3 was my 43rd birthday. I admit to missing having a big, sugary traditional slice of birthday cake, but I’m proud I was able to maintain the diet. There are some very nice treats the diet allows me, so it’s not so bad.

Family and friends are visiting. We try to get outside for sun and fresh air. I continue to work with my pranic (vital energy) healers and am looking forward to a masseuse coming to the house tomorrow to work on me. Luckily it is someone who I have been going to for years so she will know how to whip me into shape. We’ve been sitting a lot as you can imagine.

Thank-you’s

Friends, family and neighbors have been bringing us food, the fish and ingredients we need for the diet and this is a huge help from an expense and time perspective.

ramp

Cos and Phil building a wheelchair ramp to our front door!

My neighbors are building a wheelchair ramp to my front door right now.

Rob and Ken

Me and Rob

Prayers

I think most of my acquaintances know I’m atheist, but I always appreciate all the prayers and positive vibes. I have to share this story though. A former boss of mine stopped by with his wife to visit and he asked if he could say a prayer for us. Rob, your prayer was so beautiful and touching, it brought tears to my eyes. It was like a poem and really touched Tina and I. Thank you.

Daily Routine

Two weeks ago I had a pretty regular morning routine, which I compiled from various Ayurvedic Healing references. I’m not so consistent with routine now, but a general description would be: Wake before the sun rises.

While still in bed say a prayer, think about something I am grateful for, affirm the possibilities that lie before me (sankalpa), absolutely anything may happen on any given day!

Drink Water in the Morning

First thing in the morning drink a big glass of warm water with a squirt of fresh lemon juice and a spoonful of raw honey. This help encourage a regular morning bowel movement and flushes out toxins. I don’t do this step anymore because of the diet and the effect of honey on my glucose.
Freshen Up! Clean the Face, Mouth, and Eyes to Awaken the Senses
Splash the face with cold water and rinse out the mouth. The senses are how we take in information from the world around us. Sharpen and refine the senses to bring greater clarity to your perceptions and your experience of life.
Wash eyes with cool water and massage the eyelids by gently rubbing them. Blink eyes 7 times and rotate eyes in all directions.

Clean the Teeth

Gently scrape the tongue from back to front using a tongue scrapper. This removes bacteria from the mouth and stimulates the digestive system. The tongue is the mirror of the intestines. When there is a white coating on the tongue that indicates toxins (ama) in the digestive system. If you wake up with a thick white coating on the tongue and bad breath skip breakfast. The body is still processing yesterday’s food.

Gargle

To strengthen teeth, gums, and jaw, improve the voice and remove wrinkles from cheeks, gargle twice a day with warm sesame oil. Hold the oil in your mouth, swish it around vigorously, then spit it out and gently massage the gums with a finger. I Don’t regularly gargle with oil because it’s kind of gross, but from time to time, I do it.

Have a bowel movement. Improper digestion of the previous night’s meal or lack of sound sleep can prevent this. Drinking warm water, followed by sitting on the toilet at a set time each day, helps to regulate bowel movements. Bowel movements are a great self-diagnostic tool.

Nasya

Putting 3 to 5 drops of warm ghee or oil into each nostril in the morning helps to lubricate the nose, clean the sinuses, and improve the voice, vision, and mental clarity. Our nose is the door to the brain; nose drops nourish prana and enhance intelligence.

Apply Oil to the Head & Body (Abhyanga)

Massage is an excellent way to detoxify and nourish the tissues in the body. The rubbing and stroking actions dislodge accumulated toxins, which then move out of the body through the digestive system. Gentle daily oil massage promotes healthy aging, improves circulation, calms the nervous system, increases vitality, strengthens vision, prevents dehydration, nourishes the skin, stimulates the immune system, remedies insomnia, and restores balance in the body/mind. Massage oils are an ancient and effective medium for delivering plant medicine. Be thorough and don’t forget the bottoms of your feet, ears and hands. Let the oil soak in for approximately 20 minutes before taking a hot shower or bath.

I apply Frankincense essential oil to my entire head. Frankincense and sandalwood help increase the amount of oxygen in the limbic system of the brain, particularly around the pineal and pituitary glands which leads to an increase in the secretions of antibodies, endorphins and neurotransmitters. This rationale for me also falls under the category of, it can’t hurt to try even if it sounds a little far-fetched.

Budwig Cottage Cheese, flax oil, flax seed protocol: Before the ketogenic diet, I was diligently following the Budwig protocol because there was enough compelling stories of it helping with cancer. If not for the ketogenic diet I would still be following that plan.

Get Moving!

Exercise restores and rejuvenates the body/mind and alleviates stress and fatigue. Take advantage of the abhyanga massage oil’s absorption time (20 minutes) with exercise. The heat you generate through movement will help the oils penetrate more efficiently & effectively.

Regular exercise, especially yoga, improves circulation, strength, and endurance. It helps one relax and have sound sleep, and improves digestion and elimination. Exercise daily to half of your capacity, which is until sweat forms on the forehead, armpits, and spine. Do warming yoga postures like sun salutations, take a brisk walk.

Breath=Life

The breath, called prana, is a powerful tool for health and well-being. It is a conduit that unifies the physical, mental, emotional and spiritual bodies. Make part of your daily practice pranayama breathing exercises like kaphalabati (breath of fire), bastrika (bellows) breath oranuloma viloma (alternate nostril breathing). Poor oxygen in the body’s cells gives rise to muscle aches, poor digestion, dizziness, depression, irrational behavior, weakness, irritability, memory loss, circulation problems and stomach acidity.

Basic Nadi Shodana

Facing east or north, sit comfortably on the floor in a crossed-legged position, or upright on the edge of a chair with your feet flat on the floor. Gently exhale all air. Close the right nostril with the right thumb and inhale slowly and deeply into the belly through the left nostril. Close the left nostril with the ring finger, release the thumb, and slowly exhale through the right nostril. At the end of the exhalation, inhale through the right nostril, then close it with the thumb and exhale through the left nostril. This makes one round. Begin with 10 rounds and gradually increase to 40.

Don’t just do something, sit there!

Meditate at sunrise and sunset for at least 15 minutes. Meditate to relieve stress, meditate for clarity of mind, meditate for your health & well-being, meditate to bring balance and peace into your life! There are numerous techniques. A couple of the more common techniques are focusing on the breath or repeating a mantra. Conscious Breathing is a basic yet profound concentration practice. Simply bring your attention to the sensation of the breath as it enters and leaves your nostrils. Keep your awareness on the duration of each breath, and when the mind wanders from the breath, just notice that and bring your attention back to the sensations of the breath. If the mind seems very distracted, you may find it helpful to label each breath “in” or “out” and each thought “thinking.” Try not to control your breath or visualize it; simply note the sensation.

[1] http://en.wikipedia.org/wiki/Ketogenic_diet
[2] https://www.ketocalculator.com/ketocalc/diet.asp

 

Brother-in-law, Albert. taking good care of my FLHT since I am unable to ride.

Brother-in-law, Albert, taking good care of my FLHT since I am unable to ride.

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13 responses to “Ketosis-bound”

    • Jon says :

      It is promising. The problem is, a sizable portion of actual tumor is needed to create the vaccine. If the tumor is inoperable, it’s not an option.

  1. Anonymous says :

    Thanks for all the information you give and for the courage and guts you have describing in a detailed manner the symptoms and feelings you have.
    My nephew has received a diagnosis of glioblastoma grade 4 on january 10th, has been operated, with radiotherapy and chimiotherapy. Right now he is without treatment for 2 more weeks then will have a stronger chimiotherapy for 6 months. He avoids taking salt and sugar.
    I shall go on following your journey with glioblastoma and wish you to continue to have your courage. Love to both of you.
    Marie-José Nice France

  2. Allen Sowles says :

    I am so glad to hear that the diet is at least making you feel better. I know the actual effects are unknown right now, but I am convinced that when you have your next MRI, it will be shrinking!

  3. guy says :

    We have limited data to look at, but both Northwest’s DC Vax-L in 20 patients and ImmunoCellular’s ICT-107 in 16 glioblastoma patients have produced striking survival benefits.

    • Ken says :

      I PARTICIPATED IN THE ICY-107

      trials in 20111. I as kicked out brecause I had tumpr recurrence wdhile on-study. The clinitian implied that I probably got the placebo. We are aware of DC Vax but we do not have some of my tumor properly pteserved. I would hsve to get a biopsy. We’re going to carry on as-is for now.

  4. Carol Weddington says :

    Such happy smiles on two beautiful people. Keep on “keepin’ on.”

  5. Beth Isikoff says :

    Ken,
    Happy Belated Birthday! This blog has great information. Thanks for sharing with us. You are fucking amazing, man. Sending positive thoughts your way. I learn something every time I read your stories. Hugs to you and Tina.

  6. Rob says :

    Nice post, Ken. Cindi and I enjoyed our little visit with you and Tina. As I said then, you are an inspiration, and I know you are an encouragement to others facing this diagnosis. Glad the diet is making you feel better. Your other notes make me realize how much I take getting ready for my day for granted — so fast. We continue to pray for tumor reduction, and for you and Tina to enjoy this wonderful Spring weather. See you again soon, friend!

  7. Milena says :

    Ken, you will always be in my thoughts. I can’t even put into words how much I admire you and Tina. I am very proud of you both. You are coping so well despite the undoubtful sadness and fear that are filling your hearts. I am always here reading your blog even though I have written to you only once back in February.. and even though I lost my husband to the disease since I wrote that message to you I am not going anywhere and will always be following your blog. If you or Tina ever want to talk I am always available.. We don’t know each other personally, but our stories make us alike. This horrible experience actually makes us all stronger and better people.. whatever it means. I am now left on my own with a 14 month old daughter but even though my husband didn’t make it, I will do my best to make him proud and I will carry on living the way he would want me to. In fact I plan to live even more intensely now as after this experience I can fully appreciate how fragile we are and how much we need to focus on the little pleasures in our lives. I wish you many more little pleasures together. Never give up and don’t lose hope. xxx -M.

  8. Rich says :

    Ken,

    Our family is being affected by the same type/grade of cancer for the second time in the last six months. I have read practically everything that can be found about this but came across your blog in searching for more. Atheist or not, my prayers are with you and your wife and I hope that whatever time you have left is filled with love. May God bless you.

    Rich

  9. Bear says :

    Ken,
    you are precious and I want you to know at least part of how precious you are (for knowing exactly may take eterrnity to discover) and for that reason am praying fervently for your mind, soul body and spirit, that you not only are restored to fulness of health but that you also may begin on a new and living road of discovery of the love to you that is to be made manifest, bringing about your deliverance from this enemy of your body and despiser of your soul, that you may know Him Who loves you and is the sustainer of all life both now and ever, to Whom all creation bows and declares of His goodness towards man, of Whom also we may have confidence with reward that our hope in Him is not in vain but to usward who believe is Life, eternal and full of joy and to you dear Ken, loved and cherished, may you know His peace and comfort, His willingness for you to know Him also, with exceeding and precious promises of His love. He is the Lover of your soul.
    Bless you and bless you again,
    Bear

    • Susan M. says :

      It is funny how prayer tends to present itself in some folks. My brother, who is an atheist, has been very moved by the knowledge of my husbands GBM IV. So much so, that when he last called us he wanted to be sure that my husband knew that he had prayed to God for his wellness and recovery. Not just to “our God”, but to “GOD”. It moved us very, very much.

      Don’t know if you can use this on the ketogenic diet, but this is pretty tasty and takes about five minutes to make. I call it one of my versions of “fluff”:

      4 ounces of cream cheese whipped until creamy
      whip in a little fresh lemon juice and a bit of sweetner (we use Splenda)
      Pour in as much heavy whipping cream as you want (1/2 – 1/3 c.)
      Keep whipping until thick and fluffy. YUMMMMY !

      Sorry, but I don’t know the calorie or carb count, but I don’t think the carb count is much.

      Prayers to you, Ken and your lovely wife Tina.

      Susan M.

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