AND NOW A BRAIN TUMOR

My name is Julie. I am a devoted single mother of 4 wonderful young adults.
For the last year I have had progressive deterioration of motor , sensory and emotional abilities. My doctors have associated the symptoms I complained about to other medical conditions I have dealt with. I have uncontrollable high blood pressure since the birth of my 4 th child. I was in a pre eclampsia state, and my pressure has remained high regardless of diet and meds. I also have just recovered from a previous surgery I had last November 2017, It was followed by complications and 4 months of sick leave.  After my return to work , it was clear that things were not getting better, I suffered from high pitch ringing in my head from morning till bedtime, and in my sleep also. My vision would be different every day, some days clear, some days doubled and other days just blurry. I didn't understand what was happening, and again doctors associated this to ageing and hormones, peri menopause to be exact and of course the high blood pressure. I took his word for it, he is the doctor, I am the patient. I will admit I felt like something more was happening. 

Other symptoms I had for a year include, a sensation of drooling from right corner of mouth, A twitch from right eye lid, daily.. smelling burning toast, becoming alert standing in the middle of the street with a car honking its horn at me and not knowing why and how I got there . I would smell funny things, always felt like I stank, took 3 or 4 showers a day to get the smell off me, it never went away. I started to have focal seizures in my right arm, first the painful clenching of the wrist followed by uncontrollable twitching . doctor said it was the high blood pressure causing it, for an entire year. He had no interest in digging further. He didn't listen to me.  Those are the physical symptoms, there are a lot more things going on , with my emotions, my feelings, impulses, behavior, thought patterns, decision making, sexuality, my soul , my ME was being compromised. I had so many emotional outbursts, frantic panic attacks, instantaneous feelings of rage that were so scary I told my gynecologist who had just done my hysterectomy that I would wake up int he middle of the night in a total rage wanting to bash my head against the pointy bed rail.   I had overwhelming desires to gouge out my brain and it turns out it was exactly where the tumor is located that I felt the urge to injure myself...I had these thoughts clear as day and wanted to do it but had enough sense to know something was wrong. But when I tell you I felt this deeply it scared the hell out of me because I was not controlling these thoughts and no one would believe me... 
When I did mention it , 
It was blamed on hormones, being a 47 year old woman who just underwent a full hysterectomy with ovaries intact it made sense to the doctors and so to me too... kinda.. So I was referred to an outpatient psych clinic. I got a psychologist who diagnosed me with a severe case of borderline personality disorder the same day she met me. We talked for 2 hours and I went through every emotion known to man kind in the 2 hour period. Borderline personality disorder. Now I had a name for this .. or did I ..

So with this diagnosis I began to understand some things about myself, yes I could see it and it was soothing to finally have an answer for some of the crazy. But it didn't explain everything, the physical stuff, the memory loss, the loss of sensations on the right side, the focal seizures in the right arm, the pain only on the right side of my body, the walking into things on the right side ,. the stumbling and pulling towards the right while walking... That stuff had to be because well I guess I am getting old .. right , need more sleep perhaps.. you just don't know what to think,,and you compensate and carry on depressed and feeling alone and crazy and confused.  My thoughts were erratic, i was acting out in ways I never ever would before , I would talk to strangers about things you just dont talk about to strangers, I would have fits of anger at random people. I kept this stuff to myself as its freaky to no longer understand your own behaviors.  Embarrassment and shame became part of life... 

Then it happened, on June 14, 2018 I went home after work as usual, It was about 11 :20 pm. I was alone as my last born son just moved out last January.  I sat on my chair and got ready to reach for the tv converter, thats when my wrist clenched up , I had about three seconds to realize this one was different, then electricity pain shot up my arm and I had a flashthought that I was about to die. ... Doctors confirmed that with my high blood pressure I could have had a stroke or heart attack, I could fallen down the stairs and broke my neck .. bottom line is I could be gone today and I am so grateful that I am still here to fight this and overcome it .. stronger and wiser and happier then ever !!!!

I woke up three hours later , on the living room floor stuck in a tight spot between my coffee table and chair. I have a vague memory of this moment and then woke up again in the morning flopped onto my bed . I woke up confused and in a lot of pain as I had done a lot of biting on the right side of my tongue causing injuries, I had a large goose egg on my forehead and seemed to have done some damage to the left shoulder , perhaps when I passed out and fell to the floor. I have no idea. 
I went to the hospital after calling my mom. The hospital took me right away and confirmed after some tests that I had experienced a focal to bilateral generalized tonic clonic seizure. 12 hours later the EEG still showing very high levels of electricity in the brain and muscles.  some bad stuff was happening...

I have never had a scarier experience in my entire life. I live in fear of another seizure, especially as I am going to sleep I often wake startled that one is starting. :( 

So after 5 days in hospital I have been diagnosed with a brain tumor. Its called a meningioma a tumor that grows from the spinal cord, the CNS and grows on the inside of the meninges cover over the brain , so it grows into the brain creating pressure and lesions and swelling and intracranial pressure , headaches and seizures and everything else. The doctors say these are the best ones to get if your going to get one. They are benign 90 % of the time but this is only confirmed once removed and is sent to pathology to determine its grade for certain. 

So now I have this thing in my head. Its the size of a large cherry tomato and its location sucks. It is growing on areas called eloquent cortex. Its covering my posterior left frontal lobe , this area was explained to me as being the remote control of my entire being !!! , its also growing into my motor and sensory strips..smells, hearing things, phantom drooling..no explanation needed here .. :( its also on top the area in the frontal parietal lobe . It functions in processing sensory information regarding the location of parts of the body as well as interpreting visual information and processing language and mathematics and many more subtle things only I  can gauge ..

The solution is this. AWAKE CRANIOTOMY  . YES AWAKE !! why awake, because neurologist have not a way to map individual brains without simply using the actual patient as a guide to where it is safe to cut and resection the tumor without causing deficits after surgery. they will talk to me and ask me to do stuff to keep track of where to and not to cut . Not scary at all :/ 
The hope is that my brain will be pleased with the removal of pushy tumor.. but only time will tell how I will be affected. This could change me entirely as a person for better for worse... just different , no one knows.. thats kinda daunting to think about as well.. 

So financially I am in a terrible place. I have not earned a penny since the big seizure on June 16 th as I can no longer work while we know this thing is lurking in the depths of my most precious organ... I have gone from 2 daily meds to 10 a day. I have no insurance as I am a casual employee. My job will still be there for me when I am well enough to return but do to the nature of my work It will be at least 6 months. I have extra needs for living arrangements. i used my last pay check to pay up some rent but I could not cover it all and with no further pays,,this is scary stuff not to mention stressful beyond words. 

I have become in my mothers care, she is 71 and lives in a tiny apt. I am sleeping on her couch as she has many ailments and cannot herself sleep on a couch and I will not allow her to under any circumstance anyways . Thats my momma. Respect !!  I need a good quality self inflating high profile air mattress and good quality pillow to protect my head and ensure I get good sleep .  I could set up in her bedroom , next to her bed so we could both sleep comfortably while she cares for me and helps me recover from open skull awake brain chopping surgery :/ She wants to support me completely but that is not fair and I need to contribute for my own mental health and sanity through this .. 

I would also love to give her some financial help as I will be using my small government help to maintain my own home, where my mom cannot live in, she cannot do stairs and my place is all stairs.  I want to help her with all costs involving my care, supplies, electricity,  food, gas, AC , and her time and patience. 
I will need to stay with her for at least 8 weeks assuming all goes well with healing and seizures post surgically. No one knows how my brain will respond to this massive intrusion. 
Also I had promised my daughter to help pay for my grand daughters birthday party in early August. Now I need help or I will not be able to help and that in itself will kill me inside :( 
I need some personal items such as Pajamas and intimate items for being in a hospital and for when your staying at your moms. 
I would love to pay off some debts that are lurking over my head now causing me stress such as a overdue hydro bill and cell phone bill, maybe pre pay a couple of months of cellphone as it will be the only source of communication for me and my doctors and family ect.. 

Anyways thats my story and I welcome any comments or questions or anything really. Thanks for reading my story and if  you feel so inclined to help us out in this scary bewildering time in our lives.. I would be ever so grateful and most certainly always pay it forward. 

Thank you 

Julie Levesque