This is undoubtedly the hardest post I will write, but it must be done (this is Tina). My beloved Ken passed away this morning peacefully and his dreaded fight with GBM has now come to an end.
Thank you all for the beautiful comments, support and love you have bestowed upon Ken and me on our journey.
This is a post from Tina, not Ken. I wanted to provide everyone with an update that Ken’s situation has gotten worse. He has had two seizures in the past 24 hours, is sleeping now most of the time and is eating less.
I want to thank everyone for their continued support with donations, meal train and all the other things that have helped us to get through this awful time.
All my love,
Since my last seizure Memorial Day weekend, I am happy to report that I haven’t had any seizures! I attribute this to the change in my diet by upping the level of MCTs, medium-chain triglycerides, to 100% by adding more liquid coconut oil. Medium-chain triglycerides are generally considered a good biologically inert source of energy that the human body finds reasonably easy to metabolize.
We are glad to report that the medicine will hopefully arrive in two weeks time. I will be weaned down on my dexamethasone medicine from 4 grams daily to 2 grams so that the experimental medicine can boost my immune system to fight the cancer.
Atlanta Cancer Care Fundraiser Video
Tina and I were interviewed to be included in a fundraising video for the Atlanta Cancer Care Foundation (see link below).
My sister Sharon has been visiting for the past week. She’s been a great help with meals and she’s added to the ramp.
We have useful tools that we need to deal with this stage of my illness. Our handicapped tag finally arrived & I have a hospital bed for when needed (I continue to scale the stairs at night to get into my own bed).
Northside Hospital sent the contract to Celldex last week and they have sent back some of the documents needed to the clinical trial coordinator here in Atlanta so that she can start the preparations to be sent to the FDA for final approval. Hopefully, all will go smoothly now and I will get the medicine soon.
I received my twin sized hospital bed a few days ago which is located in the library of our house downstairs. This way I can look out at the garden and hear our fountain outside. Our physical therapist also recommended that Tina use a gait belt to help me with moving around, transfers and to ease/prevent falls.
How am I Doing
Well, I have had two more focal seizures this week; one probably due to caffeine, drinking strong, Finnish coffee (caffeine is a potent stimulant and trigger for seizures – Tina tried to warn me not to have the coffee but I insisted) and the other from overexertion, both of which are triggers for seizures. My threshold for seizures is definitely low. As a result, our dietician has modified our diet too by increasing the MCT oil or liquid coconut oil in all of our meals. We have been eating modified meals since Wednesday evening and my glucose this morning was the lowest it has ever been, 65 which is great news! GBM cancer cells depend on glucose for energy supply and survival. When glucose levels are reduced, normal brain cells metabolize ketone bodies for energy. Brain tumor cells cannot do so. This makes the tumor cells vulnerable to death using therapies that target glucose metabolism.
I am experiencing more fatigue but am keeping my energy level up by continuing physical therapy and painting my wheelchair ramp.
I had another pranic healing session yesterday and am hoping to start Qi Gong next week (my neighbor teaches and has offered to come to the house to do one on one sessions).
We went to the Dr. this week and were told that the paperwork has been submitted for compassionate use of the CDX-110 drug. Once it has been approved by the legal department at Northside Hospital it will then be sent to Celldex, the makers of the drug, for approval. Then the clinical trial coordinator at Atlanta Cancer Care will draft a unique protocol specifically for me to be sent to the FDA for final approval. All of this could take 6 more weeks to get approved before I get the medicine.
We have been on the ketogenic diet for one month and it is still going well. I learned from my dietician yesterday that I’ve been in ketosis for 3 weeks time! I will now take the following supplements to increase my energy level: Vitamin D, Calcium and a Multivitamin.
My physical therapist paid me another visit this week and I’m learning more exercises to increase my strength, gait, mobility and transfers.
Got my handicapped parking tag today too!
In a recent previous post I reported that doctors told us I may have weeks to live. So I’m reporting now that I’m still alive and kicking. I feel well. We believe the ketogenic diet is going well and helping. Headaches have diminished and I have decreased my Dexamethasone, steroid dosage by half. I have good energy. I am falling less. Walking about has gotten better.
Blood glucose and ketone levels seem to be in ranges where we would like them to be. In fact, I believe that my body is going through ketosis which hopefully will shrink my brain tumor.
We finally got a visit from a physical therapist to explain how to use some of the equipment, i.e., walker and cane, and she also gave me exercises.
I finally got a batch of Phoenix Tears, the oil from the hemp plant. There is much evidence that cannabis has great medicinal and healing value.
I still have a bit of the chemo Lomustine in me which isn’t enough to count as a treatment. So, my current treatment is the ketogenic diet and now hemp oil. If we actually get tumor reduction, we won’t know what treatment to credit, but I guess that will be okay.
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.
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.
We have to monitor my glucose levels daily and we check ketones daily as well as body weight.
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?
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.
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.
My neighbors are building a wheelchair ramp to my front door right now.
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.
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.
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.
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.
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.
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.
We just celebrated me successfully sitting down without assistance from anyone. How SAD is that (celebrating simply sitting down on q big couch nonetheless?.)
Let me — elaborate: lately, some of the most basic tasks have become difficult or rather my mind or body give out before I can do something simple like lift a foot up a step. My body has been weak for a while, but now things seem to be more like neurological deficits, maybe little seizures. This past week was particularly challenging. Luckily we had good friends and family visiting to lend a hand — to help me move from spot to spot and make it to the bathroom or into the house after going outside for some fresh air and vitamin D. Also, to pick me up from lying on the floor. Sometimes I just have to find the floor and lie down before my quivering limbs drop my body limp. It doesn’t seem to me like I’m so feeble but it has been bad. And I know I’m still ahead of the curve. Many brain cancer patients are worse off.
Hopefully that helps illustrate how difficult things can be for me/us these days. I wish I could convey more clearly what life is like for Tina and I now. While things are difficult, it seems like we adapt and things aren’t that bad. I shouldn’t speak for her though.
That little celebration was on the heels of a week fraught with accidents and difficulties. Now, as I finish this post, I’m proud to report that I was able to move about the house and ascend the staircase to our bedroom unassisted (always supervised by Tina, but at least on my own.) If that changes we may have to get a hospital bed brought into the living room. Typically, when a person is admitted to hospice it technically means they are no longer pursuing aggressive treatment. Our mindset is aggressive still though, e.g., we are still fighting hard and are also waiting to hear back to see if I got approved for compassionate use of CDX-110.
Some useful equipment we have begun using are a wheelchair, walking cane, handheld urinal, protective underwear and shower chair.
I am proud and thankful to have friends that I regard as close as family and who consider us family. People who came into our home this week and made sure we had all the help we needed; helped keep us calm and relaxed and happy.
It turns out that maybe my last post prematurely announced that I’m doing well. Reconsidering the MRI scan and growth of the tumor, I understand now that doctors think I could have a matter of weeks to live. It’s probably time to call in hospice. That sounds pretty bleak. I do plan to move forward with this ketogenic diet. We hope that it will restoe some vitality, mental clarity and help control seizures, symptoms and headaches
I have known for a long time that my two to five year survival odds were low just by having this cancer, but to hear that I could be so close to expiration could be quite a shock, if I believed it. Similar to when I heard my first diagnosis, it’s a little difficult to believe that Death may be lurking so near.
Recently, I’ve had more frequent headaches in the morning & other symptoms, so we moved my MRI from mid-May to yesterday.
Results are in:
There is no new swelling of the brain. The tumor has increased slightly in size — nothing unexpected or concerning, really. In a way, not bad news. We will likely discontinue chemotherapy. We are going to move forward with the Ketogenic diet hoping that it will help reduce tumor size. My oncologists don’t expect this to happen, but we are encouraged by studies and testimonials we have investigated. Here’s a video for anyone interested in more info:
Dining with Chefs, Loosening Restrictions
Over the last year or so, I have become friends with my local butcher/fish monger, Lynne Sawicki, owner of Sawicki’s Meat Seafood and More in Decatur, GA, when I redesigned her website (http://sawickisfoods.com/). She offered to cook for Tina and I in our home and we took advantage of that offer last week. We decided that we could loosen the self-imposed ban on meat and we ate lamb and some yummy desserts, not worrying about sugar. I’m back to avoiding sugar, but the ketogenic diet will recommend that I do eat meat and fats and oils. Lynne has worked in some of the best kitchens in Atlanta, including Partner’s, Indigo, Alon’s, The Flying Biscuit, Nava, Floataway, and Bacchanalia. It was a fantastic meal and evening.
The Meal Train has been a very helpful resource for us. Since I’m the family cook, when friends and neighbors sign up to bring us meals, it takes a lot of pressure off Tina and I worrying about what’s for dinner. Since I am Sawicki’s web developer, I have to take this opportuniy to promote them and their excllent Prepared Meals To Go. More information here on her site: http://sawickisfoods.com/prepared-foods/http://sawickisfoods.com/prepared-foods/.
Too Much Information / Full Disclosure/Too much information / No Time for Embarrassment
Since I’m sharing my story, I may as well share it all without reservations in case it’s helpful information to others. Rushing to make it to the toilet last week, I was unable to make it and crapped my pants. Not a pleasant story to share and we don’t think it was specifically related to my tumor but I suppose these things can happen. The MRI revealed mild ventriculomegaly, slightly increased from the prior scan. This can cause incontinence, abnormal gait and dementia. This pesky tumor is becoming a nuisance.
Almost daily I have bouts of weakness and shaking where I need to sit or lie down to avoid falling. The steroids make my muscles weak. These are quite scary for Tina. It is difficult and tiring for her to move me to a safe place to land. I had an episode tonight which she thinks was a seizure, which maybe it was, because I was unresponsive and shaking while lying down after trying to go for a walk, but I tend to not want to admit that I may be having seizures.
“The Foulness is what I have termed an unpleasant taste/smell sensation that I experience daily. It’s an unpleasant, metallic taste/smell. When taking chemo, a common side-effect is that taste may be affected. This Foulness of which I speak is not when I eat something. It appears almost anytime. It could be triggered during a walk or anytime. It’s very unpleasant.
My blood counts are good. My spirits are high. My support network is incredibly helpful and uplifting. I can’t complain too much.
I will begin the ketogenic diet soon. I may have the option to receive compassionate use of CDX-110, which is a drug in clinical trials. I would not be part of the clinical trial, but may be approved for compassionate use. This is a drug that we have had our eye on for quite a while.