Diagnosis, Surgery and my New Life

August 2012

I have been living with my wonderful friend Elizabeth for about seven weeks starting in early July 2012. I was camping back yard in Elizabeth’s living in my pop-up camper by longing and choice. I have been considering it a little seven week vacation. I have loved camping in Elizabeth’s back yard. It has been really healing and beautiful experience for me. It may sound silly, but I have loved it.

As you may not know, but I have been having some cognitive impairment for the last month. It had been chalked up to PAWS (Post Alcoholic Withdrawn Syndrome). I am (November) now almost 6 months sober again. Clearly in the pulpit as a worship associate on Sunday, August 19th many in church heard my language difficulties with language. Even on that day, it was a long and wonderful day with all of you that day in church. I was in full “Hummingbird” mode of the sipping the nectar of all of your sweetness.

When I got home after church, I worked with Elizabeth working around the yard and it felt good after not trying to talk. But at one point, I stopped being able to talk at all, with the exception of the ability to cuss. Probably not the best result of a seminarian. Thank good that Elizabeth and I have a psychic connection; she was able to understand my signs and pictures I sent to here. Elizabeth finally convinced me to go to the hospital. I had excellent care from many, but a favorite memory of the ER triage nurse to laugh and cuss with me as we figured out what to do with me. My inability to speak lasted about 2-3 hours. I experienced is a type of seizure, but only impacts speech. River Bend physicians quickly established that it was not a stroke. River Bend swiftly moved me to an MRI. An MRI immediately reviewed a tumor.

I viewed the MRI when the physician came in and quickly brought in a surgeon specialist in neurology. The tumor was located above the left temporal ear (think “cell phone” location with a mysterious image that appears as a miniature cell phone in the center of the tumor…. no really, but they won’t let me have a picture of that, as much as I’d like to share with you). The tumor was a 3 cm sized tumor (about the size of a silver dollar).

A respected fellowshipped surgeon Dr. Angeles is outstanding and has practiced only brain surgery for many years. She spent 3.5 hours originally planned for 2 hours of surgery, and she got it all! The tumor was diagnosised as a malignant, a stage 4, Glioma Blastoma. Chemo and radiology in currently in process to get all the floating cells miss October through the end of November. Generally the diagnosis for this type of (removed) tumor is about 18-24 months. I’ve heard of those who live at least 20+ years. But then we are all terminal, and I expect to live a long time! I have a lot of things to learn and do and share, so I expect to be here to continue me work.

I had a bit trouble with speaking, aloud reading. Short words is a challenging giving up my 3-6 syllables; I’ve learned that  I had huge vocabulary and a lot of pride about using it. So instead, I stumble myself over the silly words I can’t say correctly. Visual words “look” right in my brain, but come out of my mouth differently than what comes out. I continue to relearn some words – they get “rusty” I’ve not used them in a few days. I can do numbers well and directions for my drivers. I have been practicing many words I want to relearn, like “trapeze.” Isn’t that a fabulous word for me today after the mediation from Rev. Don’s first Sunday with us at UUCE?

I had been reading an Audio book by Thomas Moore, called “Dark Night of the Soul” where he shares the story of Jonas. I have had to read it several times to understand it.  So I have made friends with the metaphor of living in the belly of the whale like Jonas, especially that MRI tube. It makes me giggle to think of living in the belly of a whale. It’s warm womb like as well.

Writing is helpful and keeps me focused and helps me to remember words and communication. If you have more questions, please do ask them. Please be patient with me while my brain misfires and I grow new neural pathways at the conclusion of chemo and radiology.

I am blessed to so many friends (my amazing Mom Pat from Michigan, Elizabeth, Jade and others) who continue to support to me. So many many friends that I can’t name all, the thousands of cards, emails, texts, phone calls and PRAYERS!

Mom has stayed in my former Cardiff stayed since August-November (date yet to be dated). She has completely remodeled this house to prepare it to sale. The now ready-move 12 year, 2,300 sq ft home, has been completely painted and remodeled top to bottom, inside and outside. We hope that this beautiful much loved home sells just in time for Christmas.