Clary Love

For those that are curious, which I have had many ask; below is a picture of the pineal mass.  The mass to our understanding encompasses the entire pineal gland so the current plan is to take the entire thing out.  We will find out more with the new scans on October 24th.   Side note, I had a neurologist say my brain was pretty.  That was nice. LOL. Everyone wants to know they have a decent-looking brain right?  ​

I typed this once in the height of my emotions, and somehow by the Grace of Jesus, it was lost. 😉.  Emotions are stupid.  I am like a really old, bumpy, and hilly roller coaster full of the ups and downs of all the emotions.  I have overarching peace but the rest is a snowball of good days, tough moments, tears, joy of the upcoming future, fear, and hiding from the what-ifs.  I am not a fan of roller coasters. I remember as a kid thinking that the feeling of my brain going in the air and coming back and smacking my skull was not what the intent of the coast was created for, but that was how I felt being on one.  Even as an adult, watching a roller coaster race off makes my head spin, dizzy, and not comfortable.  The joy that comes from my husband and boys riding, it is not the experience I feel.   Now, it is the emotions that bring the waves of nausea.  I like being in control. I like owning the narrative. I will guide the perspective and an...

The waiting has been tedious.  Awkward almost.  Brain surgery. Mass Removal.  Do I say something? Do I tell others?  Do I ask for prayers? Do I share on Facebook? Do I keep it hidden in my heart?  Saying things out loud makes them real. It brings the scary things out to light. It brings the questions and looks.  I have started to ask God what he wants me to do. His plan must be more significant than my own.  I had a person call the other day who had overheard my diagnosis.  The situation was unique, and unbeknown to me, she was struggling with some of the same symptoms I was, however, on a different timeline. She was able to find it so much sooner. No waiting years and years with terrible medications.   After learning about me, she went and asked a doctor to run an MRI.  She called in fear to ask who I was seeing, she too had a pineal mass.  I know no other person who had anything wrong with their pineal region, only a few who ...

 After going to the first recommended neurosurgeon, I was determined to find someone who could help. With the help of those who have trekked through Neuro and some well guided friends, I called Ian Dunn out of OKC.  I got got a referral to speak with him, hoping if nothing else, that he would be able to refer me out of state or to someone who specialized in the Pineal region of the brain.   I received a phone call a week before the appointment only to find that Dr. Dunn would not be able for the appointment but I had options to come get established or wait till he returned toward the middle or end of September.  I grabbed the opportunity to state my case to the person on the phone with me and share how I was looking for a referral on someone who specialized in the pineal region and understanding cysts and pinealocytomas.  To my wonder and surprise the nurse on the phone was the hands on support for Dr. Dunn and encouraged me to keep my appointment and come ...

​I am the kind of person who is going to start research as soon as they have a question.  Not google, although I won’t deny pineal region didn’t go in the search engine immediately. But medical journals, peer reviewed journals, research article…data that is founded not on opinion but findings or the lack there of.  It often gets me in trouble and it is the way I have made my living for the last ten years.  The pineal region of the brain is the most misunderstood and most under-researched. What is known is it has do to with the melatonin in our bodies but not really what else.  It is tiny and thought to be the Seat of the Brain and the Third Eye to spirituality.  Neurologists have been trained to not interact with the pineal region of the brain unless they suspect the mass is cancerous, and even then, only if they have to. Surgery on this area of the brain is difficult and takes high-level technology, and skills, and with little research, the unknowns are higher...

​I have typed this once and lost it.  I have thought about what to say and how to say it repeatedly. Since July, my whole world has made more sense and been tipsy-turvy turned upside-down.  Chronic pain is no joke.  I have dealt with headaches and extreme motion sickness since I was a child, back and neck pain since middle school, my hair turning grey in high school, and a handful of other strange symptoms.  No one ever wanted to put them together or even attempted.  In high school and early college years, I went to a handful of neurologists due to headaches, eye issues, and nausea issues, and their answers were either I was making things up, or my symptoms were too strange to make sense of.  I willingly gave up and decided for years I was misunderstanding what was happening in my body.   Everyone’s head must hurt; they just don’t complain about it.  Everyone must walk around nauseous and just not say anything.  Everyone hears their heartbeat...

​The grief triggers are never surprising in retrospect but earth-shattering as they hit you like a tornado in the middle of the night in a town with no sirens. The devastation is quick and shaking, and then you are just left in the aftermath.  A thought A smell A memory A song The daily task at hand  It is everything and nothing, and it comes in waves like a summer storm on the all too often, visited favorite spot on the lake. The place that was bright, airy, and brought joy yesterday beings tears, confusion, angry, or exhaustion today.  Grief is draining.  When you think your safe it sneaks up like a thief.  When you except it, prepare for it, wait for it, grief laughs and subtly shutters off to hide in the breeze.  It changes, grief, like the morning light and evening dawn shifting with weather, seasons, and the all too strange tilt of the universe. It never shows up quite the same but when it saunders off you know the visitors name, you know it was there...