Jonathan’s Story

Site created on December 7, 2018

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

Newest Update

Journal entry by Jonathan Widener

As we swing into this new year, it is already so full of adventure. I am in the new skilled nursing facility called Seaport17 Rehab & Nursing in Santa Monica, its cross streets are 17th St and (you guessed it) Arizona Ave. The entire experience is amusing. I haven't been able to blog because my MacBook Pro is having some lagging issues and it needs to go in to the Apple store for diagnostics. Yet, that has to wait until I am released in mid January. So the blogs will be a little shorter unless I can find an alternative. In the meantime, my nurses and physical therapist are great. My OT person is wonderful to talk with, yet she admitted she is not as well versed on my particular goals and was glad that Janelle from CRI gave me TONS of homework to continue my rehabilitation on my right hand.  My OT here will focus on some fine strength building which will be helpful nonetheless. I do enjoy my OT, it is just different. The great news is I connect with them and feel I am getting something out of it, I most certainly am. This particular rehab facility is older and very utilitarian, yet what lacks in the physical old bones of the place is made up for in the passion of the daytime nurses and admin staff. It is owned by one man named Barry. He stops in every day to say hello to every patient with such genuine care. This is not owned by a corporation but one man trying to do his best. I was told by several people who work here that they greatly admire him and this is the best nursing facility they have actually worked. It shows in the care. On visual appearance, I would have overlooked this place but I am happy to have this new experience. What's more incredible is there is a nurse that goes around to ask the long-term elderly patients what movies they would like to see as many do not have families or friends who visit them, so they are unable to go to the movies or rent them. So this angel of a nurse will go home and download them from pirate sites so these wonderful disabled elderly can see the current movies that otherwise they would never see. In my eyes, that is a nurse that goes well above and beyond to make sure these folks still have a connection to the current outside world.
Yesterday, My wonderful fiancé Nowell, drove the distance to spend the day with me on New Years Day. Of course he brought Penelope Violet and Oliver James. A picture perfect little reunion. Of course by the end of the visit Oliver was ready to go home with his Papa Nowell to his toys and his Tigger and Klhoe. He's become a Papa's boy for reasons I have no clue but it makes me happy. I was able to get a pass to leave to have lunch with Nowell a block from the ocean. Delicious vegan Thai food in what looked like a simple place. The thing that was most off-putting were are the privileged young WASPs everywhere. Ugh! A world I no longer remotely relate to. The trio of sorority girls sitting at the table behind us were clearly on something. To the point one kept saying "I don't wanna take more Aderol" and something about the prior night's party they had attended. Then she burst into tears about how terrible her life was, something about her BMW, her parents, then as quickly as she was shedding tears, she was standing up at the little table with her friends laughing and talking non-sense as her friends seemed to encourage all of this. Rich white people problems. Nowell and I sat at our table listening and looking at each other thankful for our diverse group of friends and how we wished we would have maybe chosen a different restaurant like a dive diner with a variety of humans. LOL!
We returned to my room and as we did, my old speech therapist from California Rehabillitation Institute Chin-Sue came by with her little dog Chocolate. That also made not only my day but Oliver's. He loves meeting other dogs like him. I only wish I would have had a toy for both of them. It is so fantastic the friends I have made in both facilities that continue. 
In an hour, my 22 sutures will come be removed. That pulling sensation will release and for the first time, I will be able to lie down flat. The little things to celebrate.

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