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).
I’m glad to see you looking good.. (so is the ramp!). Was thinking about you today.
None of my wheelchair ramps reflect beauty and healing. I know how liberating a handicapped hanger can be. Don learned the magic of gait belt use. They help so much. I am so glad to know you have all you need save the upcoming medicine. Coffee and its content can be hell. So is trying to give it up! I continue to pray for you, Tina and all your loved ones. May love and help continue to flood your way! xxxxooo
I’m so happy for you, Ken, that you continue to enjoy your art. I can appreciate the symbolism in your ramp artwork. To paraphrase a quote, “If you can’t change it, decorate it.”
Bravo for your paintings. It’s a wonderful idea!
I admire your courage and guts and wish the next treatment will help you a lot.
Thanks for giving all information on what seems to help you cope with the problems due to GBM. I will transfer them to my nephew with a diagnosis of GBM last January and has a lot to fight.
I send you many positive thoughts and wish you and Tina the best
with love from Marie-José
from Nice France
Ken you have been a talented artist as far back as I can remember. Great to see your still creating beautiful things, especially from ordinary objects. Peace, love and happiness
Love the ramp! So beautiful – You were always so creative! Miss you! Xoxo Cara