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Charmane's Journal

Discussion in 'My Optimal Journal' started by Charmane, May 2, 2019.

  1. Charmane

    Charmane New Member

    I am very new here, but I guess I have to start somewhere...

    I'm 50 years old. At 47, in July 2016, I underwent neurosurgery to remove a nice big chunk of my right frontal lobe. Was diagnosed as having had a "unique" presentation of a rare form of cancer: oligodendroglioma, grade 3. Considered unique because upon looking at it, the neurosurgeon was sure I'd had a totally "grade 1... maybe a grade 2" brain mass. No sign of the "fried egg" nuclei or "dendritic" "chicken-wire" patterns normally seen with this sort of cancer. It was the genetic side of things that apparently got me the grade 3 oligodendroglioma diagnosis.

    It's been nearly 3 years and I'm doing well. Last MRI was in August 2017, with no sign of recurrence. From March 2017 to January 2019 I went to stay with my parents in California to rest while I could "get my head back together." ;) No seizures since May 2016. Stopped taking keppra in August 2016 because every time I took it I felt like my head must've been hit with a sledgehammer. Just felt compelled to stare into space constantly and I missed being able to feel like my body was closer than a thousand miles away from me. I was staying up until 1, 2, 3 in the morning, just so I could feel a little like the drug was wearing off and I could feel "alive" for an hour or so, before taking a "before bed" dose. The following morning dose then felt like a prayer for suicide. I was miserable on that poison.

    After 22 months in California, as I felt well enough to start my life over again, I prepared to return "home" to Oklahoma, where I still had a paid-for house and a former job as an assistant kindergarten teacher in a private school.

    But I knew my house was directly across the street from a gigantic cell tower -- a rather unusually "low-set" one, at that. I'd lived in that house since 2002, when the tower was just a pole with 3 little panels on it. Since then, it grew considerably, and cell phones entered the house, laptops on wi-fi, a smart meter...

    My father gave me a tri-field emf meter for Christmas 2018, and I took it home with me. The RF meter can read up to 19.000 mW/square meter and my house read, 1----- and just whined. The lowest reading came from the center of my son's former bedroom, and it was 5.(assorted numbers). Too, too high.

    Just sold the house today (May 2019). Waiting to close.

    I'm quite convinced the tower across the street was a definite factor in my illness. As I looked more into nnEMF pollution, I then proceeded to become very alarmed at the impending 5th generation of wireless technology, and as I searched the internet for someone who knew something about "where to go to escape," I came across Jack Kruse in a youtube interview (forgot the interviewer's name). Weirdly enough, just a few days prior, I'd had a dream of walking home from the school I attended for 6th grade. I'd had a classmate named Peter Kruse, who'd had a brother named David. In the dream I was in the house. I knew it was the "Kruse" house, but I couldn't remember who I'd come here to see. Peter? David? Strange dream. Dismissed it. But the name "Jack Kruse" really caught my attention when I saw that interview titled in my e-mail a few days later. Just felt I should check out the link and listen.

    Light? Never got much of that on purpose. I grew up in California and escaped a lot of family-crazy by holing myself up in my bedroom with books and writing projects. Very good student. Became a musician. Only outside when Californians invariably find themselves outside for one reason or another. But there was 1989. I was 20, and after teen years filled with drinking/drugging, I went toward "health," after a dream of following a mountain lion through California hillsides. I started walking along a nearby levee at Uvas Creek every morning, right at dawn. First for 2 miles a day, then it jumped to 4. I'd come home and lie in the sun for 20 minutes, then start my day. I only thought of this as "exercise" and "tanning" in those days. I started eating a vegetarian diet with an emphasis on fresh vegetables and fruit. I had a hand-weight routine I'd do before getting ready for bed, and was asleep always before 10pm. I felt radiant and planned a future that included going to college... and then holed myself up again with study and journaling and songwriting and bewailing an "impossible" relationship I was in at the time. It was very, very gradual, but I continued to feel a little worse as the years went by.

    By 2009, I'd become a single parent to my son, after divorcing an alcoholic. By 2014, I was totally exhausted. I'd represented myself in my own "pro se" divorce, I'd written a novel on an old laptop during the nighttimes while my son was asleep, and I kept fiddling with the manuscript from 2008 to 2011. I worked as a substitute teacher by day and came home to check my homeschooled son's work by night. Money was always a challenge. Weekends were spent planning lessons and gathering materials. Night was my only time to myself so that's when I wrote and worked on music projects. I was living on adrenaline. Sleeping, on average, about 3 hours per night. I can remember going to the grocery store, sleeping about 10 minutes, shopping and putting purchases in the car, sleeping about 10 minutes, driving home (to my cell tower), sleeping about 10 minutes, bringing in the groceries, etc.....

    2011 was the first year I didn't feel "familiar" to myself. I wondered if I might die of a heart attack in the night. I'd read women often have no real signs; they just go to bed, hoping to feel better, and wake up dead. ;) The only way I addressed this was to write out a basic will and keep it under my pillow.

    2012 saw menstrual irregularities starting. Bleeding that lasted a solid month. Flooding (with back pain) that kept me from leaving the house. I attributed it to a tough transition into menopause (I was 43), and looked forward to it abating. Cleared up in a couple of months.

    In 2013, a hemangioma that had first appeared during pregnancy, swelled to the size of a small nipple, and one night I had hemorrhoidal bleeding that "peed" into the toilet for a minute or so. This cleared up, the hemangioma swelling went down (covered it with a tiny bandaid). I started dating the love of my life, who I'd prayed would notice me for a year and a half. Life was finally looking up! He ghosted me after 2 months. Married someone he'd apparently already been seeing and pretended (when he did see me again) that we'd never been anything but fellow members of the Oklahoma Composers Association. I was beyond crushed, and my life fell apart more and more. I'd gotten a new job as an assistant teacher and I could barely get my job done. Got up at 4:30am every morning just so I could be always 5 minutes late to being expected at 7:30. I could no longer homeschool my son (now at 9th grade) as he lacked the motivation and commitment to his assignments that I needed from him. I grieved turning him over "to the state" for public school. A new relationship. Then a seizure in May 2014. I attributed it to sleep deprivation (I'd been online every night, "stalking" my "ghost" just so I'd have some kind of story as to "what happened?") I quit my job, because all I wanted to do was rest. Lived on credit cards through summer.

    But I didn't get better. The new guy broke up with me November 7th 2014. Mostly for legitimate incompatibility reasons, but he also told me my breath had started to smell like "rotting meat." I had a seizure that landed me in the ER on the 10th; my son turned 16 on the 15th. Brain tumor. No driving.

    I went a holistic route. GAPS diet, supplements, walking everywhere I needed to go. Entered a hyperbaric oxygen study in OKC that was shut down after my first 5 or 6 treatments.

    Next seizures: September 2015, February 2016, then three of them in 3 days' time in May. Decided on surgery at that point.

    Went to Mexico for 3 weeks learning the Gerson Therapy. Stayed on that protocol the full 2 years to the best of my ability while living with my parents. A lot of "trials" with all the "detox," but just kept feeling better and better.

    Now, here in May 2019, I just want to live as tethered to the natural world as I possibly can, and joining this site is part of that journey.

    If you've read this far, I really appreciate your interest! I'm on my way to an appointment. I'll do more "medical history" (including mom and grandma) -- I assume this is about mitochondria(?) -- next time... :)
     
    JanSz and caroline like this.
  2. Emma C

    Emma C Titanium

    Hi! Welcome! Wow, what a story. I'm new here too :) Can't wait to follow your journey!
     
    Charmane likes this.
  3. caroline

    caroline Moderator

    Hi Charmane ....and welcome to journal land.

    You have an amazing story of persistence and fortitude....

    Tell us about your music when you have time...
     
    Charmane likes this.
  4. Charmane

    Charmane New Member

    Thank you, Caroline! I have an old habit (working on dispelling it) of worrying about what others think. I am indeed very stubborn. Worried what folks would think when I continually did not seek conventional medical advice, and just kept going it on my own for so long... then persisted in doing so even after a brain tumor diagnosis. The cancer thing can be scary... if I let it... sometimes. My neurosurgeon told me, "it's sort of a bright side, really; at least you'll never have to work again." :/ Well, yes, I feel I probably will. I'm not dropping out of life-here-on-earth just yet!

    Anyway, then I remembered I noticed a lot of strong-willed and/or idealistic folks commenting in regard to Jack Kruse's work. Glad to see this page seems to be a genuinely welcoming place for folks truly trying to explore more of what health/wholeness/wellness really are all about. More and more and more please! As much as I can take in!

    As for the music. I was very DIY about that, too. Unbeknownst to me at the time, my singing/songwriting was very much in the vein of California folk music that was certainly surrounding me as I grew up in California through the decade of the 1970s. I've been told I have a "Joni Mitchell vibe." And yet, I never really paid any direct attention to those artists back in the day. After all these years, the description seems right on the money to me, now. I studied classical voice performance at San Jose State University for 2-1/2 years (eventually, I dropped the music major and "expanded" into a more general "Creative Arts" degree). The immersion into voice-study caused me to fall in love with the human voice... and especially with choral music. Vocal music can be as huge as an orchestra (with more options when it comes to "spontaneous tuning") or as intimate as a bedtime lullabye. I began to see voice and percussion as the "original" instruments. I have no experience with percussion or drumming, but I dearly loved the voice. As a result, my music is either "folksy" (just voice and guitar) or small choral ensemble stuff... sometimes something different "just because."

    My folksy side (these were recorded in January 2014, nearly 4 months before my first seizure, except for "Rain," which I wrote after one of my cats was killed in March 2016; "Rain" was recorded in July, just days before neurosurgery) : https://charmanemvaianisi.bandcamp.com/

    The choral side (recorded March 2015; "Winter Rose" and "Turn" are the "oldest" uploads I have on this youtube link; "Turn" could very well be said to exemplify my approach to health ;) ): https://www.youtube.com/channel/UCl3ML04UBlEio5g-bUBH33g

    Thanks again SO MUCH for welcoming me (and my music, too)!! :love:
     
    JanSz likes this.
  5. Charmane

    Charmane New Member

    Oh, and I wanted to get that "mom's and gran's" health history in here. Might as well get that done...

    Mom is now 73 years old. Born in 1945 in Los Angeles; moved to San Jose when she was 5. Still in Santa Clara Valley. Has a terrible time with gut health. Stays on a gluten-free, dairy-free diet. Tries to stick to certified organic food. Juices too. Tons of supplement regimes -- one after the other; keeps trying new ones. She loves convenience food and she's always looking for quick and packaged "organic" food. My dad now does all the cooking because her back has been going out on her ever since I was about 7 years old. She seems to always be in pain, feeling weak or drained. She's recently been laid up again during this last week. Horrendous insomnia and when I told her I wished she'd rest in darkness, she refused. White nightlights are all over the house. She's "always" had "night blindness" and she insists she needs the comfort of nightlights. She has hair-loss issues, she's had cataract surgery that left her with prosthetic lenses. She tests as vitamin D deficient and can't figure out how that can be (since she loved yardwork when she was young and California gets so much sunshine), but she spends multiple DAYS in the house and gets in and out of her car inside the garage. Natural daylight gets in through the garage door, I guess. Wears sunscreens religiously and hates hats. One tooth just mysteriously died and she had it removed rather than wait for it to fall out. She has a ton of heart palpitations that scare her at times. Very hard to get to know. Irritating personality after a day or so of being with her (this is not a new development; even my dad will attest to that). She's had skin cancer removed from her scalp. Her hearing is not as sharp as it once was. Has arthritis issues and beginnings of osteoporosis. In her 40s, she underwent a total hysterectomy, as she was told fibroid tumors in her uterus may be the cause of her recurrent back pain. After surgery, the surgeon told my father my mother had more fibroid tumors throughout her abdomen and wrapped around her spine that he left alone. I don't know if my mother was ever told; this may have just been a secret my dad told me. As a child, she wore glasses because she was nearsighted and she was allergic to wild mustard which grew in nearby orchards. She had 4 teeth removed for "cosmetic reasons" so that her teeth would all fit straight in her mouth, and she had all wisdom teeth extracted, and she lost another tooth in her 30s after a root canal. I'm her oldest child, born vaginally with a caudal block, in 1969. My brother was born in the same fashion in 1971. Neither my brother nor I were breastfed even a drop.

    Mom's mother passed away after suffering from dementia. I think it was 2000 when she crossed over. She was born in 1904. She had a fraternal twin sister, and they were #14 and #15 or 15 children (Irish Catholic farm-family in Missouri). Grandma was 41 when my mother was born. My mother was the 3rd of 3 children. My aunts were born in 1936 and 1938. Hospital births all. I think they used "twilight sleep" back then. But Grandma did breastfeed her three daughters for several months each. Grandma was diagnosed as having the beginnings of breast cancer about a year before she died. My aunt made all medical decisions for her at that point, and she insisted on sending my 90-something-year-old grandmother through a mastectomy (just one breast) to "take care of things." Grandma wore glasses and had missing teeth (she wore dentures). She was almost never sick before her 80s, and said she had never experienced a headache in her entire life (and therefore had zero compassion for anyone who couldn't "keep going" while suffering from one). She'd been on some sort of blood pressure prescriptions that got changed multiple times just before the dementia set in.

    Guess I can include a bit more of my medical history, too. Chronically on penicillin, ampicillin, erythromycin for ear/nose/throat things through my entire childhood. At 14, I forgot to take my antibiotics during a concert weekend, and I noticed I completely got better for the first time in my life. I was actually exposed to "agent orange" during my childhood -- pretty much daily from 1974-1979 (long story) at very low levels. I had Reyes Syndrome in 1977. Was comatose for about 8 hours. Liver specialist told my father what I had was 99% fatal. (Doing pretty well, considering). ;) Wisdom teeth extracted under general anesthesia in 1983. Tonsillectomy in 1987. My son born in 1998, "natural birth" in a hospital, breastfed him for 3 years. I only have the one child. I'm now menopausal. First day of last period 25 July 2016 (horrendously uncomfortable -- no pain, but intense contractions -- took a lot of kegels to make me feel walking was safe). Neurosurgery to remove diseased brain mass was 11 July 2016. First day of penultimate period was 1 July 2016. So July 2016 was quite a busy month as far as my body was concerned. All seizures I'd had were followed by menstrual periods, and almost no periods happened during the months between the seizures.

    Gosh it's hard to stop once I get writing... But that's about all I can think of... Good time to sign out...
    Many thanks...
     
    JanSz likes this.
  6. caroline

    caroline Moderator

    wow - you are great with all the detail!

    I suppose ....looking at your Mom's life and health history .....there goes you except - you found Jack Kruse!

    Now that you know better.......

    I am going to listen to music now......

    Have you ever seen the movie with Glen Close .....about women in a Japanese prisoner of war camp ....they formed their own vocal orchestra.

    The title should come back to me.....
     
    Charmane likes this.
  7. Charmane

    Charmane New Member

    Just looked up the Glenn Close movie (nope, hadn't heard of it), _Paradise Road_, based on Helen Colijn's book _Song of Survival_, Colijn's own memoirs about being interned in a Japanese POW camp. I do not have the skills to score orchestral music from memory... I don't even have the skill to score it by ear (my own pieces are very simple; I have a personal ideal of writing music that can fit on the average front porch and not need to be plugged in :) ). My notation skills are very minimal due to a "fake it 'til you make it" approach to San Jose State's music requirements. Stayed long enough to learn I was indeed capable... and changed my major to one that allowed me to graduate sooner, married the guy who became my son's dad, and always thought I'd one day "go back and do it right." Windows only stay open so long, I'm afraid. Now my life is set toward more practical pursuits -- health and a decent place to live in pursuit of health. But I won't give up singing. If starving/brutalized women can find a voice in that camp, I'll certainly work at keeping mine in order!
     
    caroline likes this.
  8. caroline

    caroline Moderator

    Did you find time to watch that movie? It was years ago that I saw it and it had such a profound effect on me.
     

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