Cancer survivors still get bullied

I just tried to post my last blog to Facebook.  Now I post on a weekly basis.  However some jerk off flagged it as abusive and or spammy.  Now I understand that once it is out there you can NEVER take it back so I will restrain myself.  The culprit is parading around as one of my "friends"  If they cared enough to look at it and  proceed to FLAG it that is just pathetic.  I have faith in people to look at what they are interested in and skip over the non interesting or relevant stuff.  Why don't they just de-friend me.  It makes me furious and deeply deeply hurts my feelings. 


I am simply a woman trying to share my story through the harrowing and most of the time deadly disease of Brain Cancer.  My question is WHY would someone do this.  If you don't like it or are not interested in the blog then why the f^$# are you taking the time to flag it .  I cannot help but take this personally.  Just so you know I will be fleecing my friends.  So if at some point someone decides to look at their friend count and sees it is lower..... that is why.


It is going to drive up the wall not knowing who did this.  I know I should just let it go because if I don't I give my control to them.  They have made me mad and hurt my feelings. 
     This brings up painful memories of High School. 

Changes

Michael and I epitomize the fact that age does not matter.  We are soulmates and we can finish each others sentences and can have an entire conversation without speaking a word.  In short he is the love of my life.

   So Pam posed the question, "How long had the tumor been there?"  The doctors don't know and there is no way to tell.  However after Grandmama passed from a GBM on the left side, my father took me to have an MRI and they did not find anything.  That was when I was 8.  However 8 years later I began having migraines.  The worst one was at Project SOAR right before we were supposed to leave on a horse packing trip.  Paula took me to the doctor and then made me drink Pedialite.  I was 16.  Anyway the migraines were so bad and I knew when they were coming on because I t always went like this:  1) tunnel vision 2) vomit 3) pass out.  When I woke up it would be gone.  So the doctors said it was stress.  I got so used to them that the symptoms all but disappeared.
     My point is from 16 on I genuinely believe the tumor on my frontal lobe was affecting my impulses.  Causing me to be misdiagnosed by multiple Psychiatrists,  psychtherapists and even My regular doctors.  It took 11 years for me to have it bad enough to ask for an MRI.

     I am not the same person that I was when I was 19 or in Kentucky.  All that time the tumor was pressing against my impulse center.  I wonder how different my life would be if Snarla had been discovered in Kentucky.  I definitely would have made better choices.  However, I am who I am today because of everything I have been through.  Though I have had a rough traumatic life I know it could always be worse and I thank God that it is not.

     There were people in Kentucky who gave a strange girl a chance with their horses. I am very grateful to them.  Then there is one in particular who I am still in contact with she wrote me a recommendation to work with Freya.  There was one foal in particular that I was very close to I called him Rab because when he was born I thought he looked like a rabbit due to his ears.  I don't know what happened to him,  he is probably retired by now.  But that relationship showed me how a bond between a horse and a human can positively influence ones life.  

Things I never knew

Wow,  we brain tumor patients go through almost the exact same thing.  I just read a very detailed blog about seizures and doctors and I was stunned to find out that our experiences are so similar. 

   So this morning I cannot sleep.  I decided to write.  Now that I am off chemo I am emotionally confused.  Allow me to elaborate; chemo is basically a safety net and now I am off chemo I do not know what to think.  I try not to concentrate on the burst headaches that I have.  Fink explained this sensation is the nerves trying to fire or cross or something.  Anyway the gist is these bursty things are most likely something I will have to live with for the rest of my life.  I am okay with that.  It is way way better than I used to feel. 

     Also, my memory and concentration is shot.  When I just had ADHD it was fixable with adderall or some other meds.  This TBI is not treatable with meds.  That is why Pam is recommending I stay on disability for a while longer.  I am actively working on concentration and memory.  How can you work on memory if you can't remember?  It is a vicious cycle. 

     So today was fun, went to barn in Wylie.  Equest is helping me as well as the youth that rides.  Helping me with my social skills, teaching me to look people in the eye.  Also I have to remember how all the saddle parts go together.  Basically I am not the same girl that worked on the track or on Czaria farm.  I am working hard but it does not come easily.  However I will keep with it because the horses keep me calm.  My fave horse is Bunny, she is a Percheron Thoroughbred  cross she is as huge as she is sweet.  I asked what it is like to ride her and the response was it is like riding an elephant,  she is very smooth though.  Everything in texas is bigger. 

     Bigger except for the weather.  That is my one complaint.  It is very rare that we get a big beautiful storm.  Both myself and my husband would love to have a screened in porch and sit on a swinging bench watching the storm.  At least we have goals.

     I cannot describe to you how in love I am with Michael.  He is my soulmate period.   I hope everyone can find someone that they are on the same wavelength with.  We are such a lovey dovey couple that we can finish each others sentences and frequently say the exact same thing at the same time.  I hope everyone can find someone they don't need to verbalize with to communicate.  We are very very lucky.  We are blessed everyday. 

equally fantastic

You know, when you hear the words "You have Cancer" a shot of pure dread goes straight to your bones. 
But, when you hear the words; "You are going into monitoring and no longer have to do chemo."  that causes a feeling of exaltation, really it is a THRILLING feeling!!!!
That's where I am now.  I just have this to say to fellow survivors:  If I can do it you can too.

Almost Free

So the Mri today was fun.  An I.V. needle went in so they could stream the perfusion dye in really quick so Dr. Fink can see exactly how it progresses through my brain.  This will tell her if I need to do another round of chemo or if I can go into the monitoring phase.  Monitoring phase does not mean Remission, it just means that instead of MRI every 2 months, I have to get an MRI every 3 months.
Woohoo, what a reprieve!!!!!

Today I realized something strange, after having about 15 MRIs the noise is starting to lull me into dreamland, whereas my husbands snoring wakes me up.  How strange. But that's life with cancer.

     Results come in Thursday.

big news: coming soon

So I will have my next MRI on tuesday, and this one is to see if I need to stay on or do another round of chemo.  Or if I can go into the monitoring stage.  Monitoring does not mean I am cured, it just means that Snarla is asleep still.  I have no doubt that she will be roused into a waking state at some point, however I have no doubt that the point will be several years from now.  Basically I have done the hardest part.

Mike found a blog on tumblr.com called A lie of the mind.  She has a tumor on her right frontal lobe and just recently had surgery.  I really want to contact her, however she obviously does not want anyone she doesn't know contacting her.  We are all in tumorland. 
Anyway I have been doing very well except for the infrequent head rushes they make me nervous.  But I have been assured by Dr. Fink that Snarla is sleeping. 
I have found myself becoming obsessed with Diablo II,  much to my husbands chagrin. 
We are in Kingwood Texas at my sisters' house. They have a HUGE yard that the dogs run around in and wear themselves out.  Hopefully they will sleep all the way home.  I am going to give them 5 pot pills each.  Don't fret, I am not really drugging the dogs,  the "pills" are simply Pet Ease treats with chamomile.

Amy made us an awesome Easter Basket and this morning I found out that Mike had NEVER had a little Debbie.  He tried one and Loved it.

Regardless of what the news is I will post it.  I have a very busy day on thursday 9am Results 1215 haircut 400 woman wellness exam.  I have confidence the news will be good, with only a niggle of a tickle of doubt at the back of my bruised 3/4 brain.  LOL

Recently I have come to find out that way more people than I realized are reading this.  I am nothing special, I just did what I had to do to stay alive.  I am keeping a record of it so in a few years when the block is firm and I cannot remember any of this experience I can go back and remind myself.  Some say Let a sleeping dog lie, I say poke him with a stick and face the consequences.  I am not sure why I made it, but I assume that I have a purpose greater than myself.  That is why we (brain tumor peeps) make it through the ordeal of surgery and recovery alive and relatively unscathed. 

 Tata for now....

Lost in transition

Hello to all my followers ( you just cannot write that so it doesn't sound like a cult.....)

Anyway, we have gotten into a solid routine.  It is nice and reassuring.  Our dogs are constant source of entertainment for us. 
     I am officially traumatized by this entire experience, what sane person wouldn't be?  All I KNOW is it is ok I can't speak for the future and the past is history but right now it is alright.  I just ask for the divine being to let me be at peace with whatever happens.  I used to wish that something "exciting" would happen.....now I just want normal and mundane.
     When I think about what I have been through it breeds strong emotions.  I can't even read my blog the whole way through because it brings up so many memories for me. I believe this is typical.  I am not special, it is not about me.  When I see Cancer commercials I can empathize with them, but I no longer feel sorry for them.  I know that sounds harsh but the medical leaps and bounds they are making give me such hope.

     For the first time in a week I am going back to the Stables.  I hope it cheers me up.