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Dec 10, 2018 Latest post:
Jan 2, 2019
This is my second time with brain cancer this year as we found out in August 2018 it had returned. August 13, 2012, I was diagnosed with Brain Cancer the first time round after a grand mal seizure and coded while boarding a plane. Brain cancer is one of the rarest cancers in the world so that diagnosis is very lonely. At the time, we were uncertain of what type or stage. My first brain surgery was on my birthday January 22, 2013 where Dr James Chandler removed 70% of the tumor. It was stage three Oligodendroglioma (thankfully a slower growing tumor), I did a full round of proton targeted radiation to cease more growth but I was warned that one day it would return. I suffered countless seizures over the last few years but I went into remission until August 21, 2018 when the growth seemly happened rapidly. I was told by my neuro-oncologist, that he wished to do a partial round of radiation and a year of chemo. I refused because I knew better. No part of the body should be radiated more than once in ten years. And the brain only once. So I mediated for days, cried and searched deep within me then I kept it to a select group that would help me navigate what to do. After a powerful dream of being bitten by two snakes in the desert of California, I knew that surgery and the hope for a future vaccine was the answer. The trials have closed for the vaccine and now it waits in the hands of the FDA. It has been shown to drastically extend the life of a brain tumor patient. It is created by the patient's own cancer cells to fight itself. A personalized treatment that makes a vaccine individual to each patient. I then met with my dear friend Melanie and we discovered Dr Linda Liau has a vaccine in trial and has also been named the top neuro-surgeon in the country. I felt called to reach out to her. It was also the same weekend my neuro-oncologist reached out to me to say he was sending me to a neuro-onclogist at UCLA who happens to work side by side with Dr Liau. I knew then that the Ancient Ones, my guardians were certainly guiding me. So I listened. I kept this a secret from my greater community until now. So I leave for LA tomorrow (Dec 10th) to meet my best friend Marc Fredson and dear friend Melissa Armstrong to begin this new and epic journey. Currently, my right hand has palsy and it is difficult to write or type BUT I still fight it and use the hand anyway. It is my dominant hand and I refuse to let it go easy. I believe I can train my brain around it to keep it from losing its memory. It is my goal to heal but know Dec 11th surgery will be the beginning of an arduous battle. Around my neck i will have the sacred talisman Native American tribes wear to protect them from danger. It is called an Earth Bundle. On Saturday, a group of women sat in a drum circle and put the small items of amethyst to protect the nervous system and crown chakra, a small pewter owl icon to watch over me, a corked bottle of earth from a sacred site in Chimayo, New Mexico where a cross kept mysteriously being re-buried in front of a church long ago, and a tiny pink butterfly to represent my favourite holiday easter and rebirth from something old. Sage graces the inside lining of this small pouch that will sit with my heart. So here we are. I hope to continue to journal more on my adventure. Please, in the meantime, sow love with one another. Keep my great love Nowell in your thoughts as this is very hard for him as he is unable to be by my side during the first month of recovery. And remember that I love you and that each of you have a very special place in my heart and have helped get me this far. Until next post.... Always yours, Jonathan