OUCH- I feel bad for Frankenstien

I've got STAPLES...I am Frankenstein, and not the pretty monster high one.

Call me an idiot....but I had no clue that when I was going in for a biopsy last week, I went in for brain surgery...again.  I heard biopsy and I thought - oh, really big needle that will be able to penetrate through my skull and suck out a little bit of those Janet Babies to see what exactly they are.
I love to learn and research....it's what I did with Graham.  If a condition, procedure or any word came up, I not only looked it up, I learned it!  Even if it involved blood and gore, however, when it comes to "science things" that involve disection, surgery - biopsy - I go off of my prior knowledge of directing worms in high school and passing out; I try to stay as smart as a 3rd/4th grader for my students.

Last week with my new team of Doctors at UT Southwestern...headed by my new Dr. Patel that I LOVE, took me back to the OR and went in for the biopsy.  While in there, Dr. Patel not only found "Janet Babies" that she was able to take a good biopsy of and send to pathology, but she also found "other inflamed cells."  I am anxiously waiting for the for path report to come back to see all that is going on and start my plan of attack.  These other cells that are inflamed are nothing to be scared of yet...whew.

I have always been a "weakling" when it came to pain meds....i have a LOOOOOWWWWWW tolerance.  And through these past few months, just how low has been not only very apparent, but very annoying at times.  I feel drunk constantly...and not only drunk, but full of energy.  And apparently this is an actual dysfunction!  This condition, known as postoperative cognitive dysfunction effects a lot of people (up to 40% of patients over 60) and can sit in someone's system for up to 6 months!!!  No thank you!  I'm done not being able to focus and function.  It's so bad, I do not have the mental capability to plan even the simplest of things!!!!  And now that I'm on a Quest to "Get my swamp back!"  this anesthesia issue is hindering it. Cutting an apple was very interesting!

Today starts a week that I have been looking forward too, hopefully on Friday, after the "neuro, tumor board meets" at UT Southwestern we will have a better grasp of what all is going on in my head and a PLAN

Home and fighting to be the real me

Let's be honest....I have no clue when I came home from the last hospital stay.  I know I went in with excruciating pain to the ER in the wee hours of Jan 24 -   Had some scans that told me Janet had babies and they grew.  Then I came home to start a plan of radiation and chemo pills I think that Sunday.  Oh....and MS Contin.  I feel as if I am taking a pill named after some civil war hero - ha.  This is Morphine in a pill - and oh lordy, I hated it.  Now, I felt NOOOOO PAIN, which is good.  But I love who I am....I am a bubbly, strong, organized, energetic (spoke say spastic or gazelle), independent person, and when something prevents me from doing that, I get pissy.  And then I get mad at those I shouldn't and then I feel guilty...so this past week I have been in guilt mode feeling as if I put everyone out and have become a burden to those I love and care for so much.  And this is where the fight comes in.  I know what I can do But Janet won't let me- I've done these tasks so long and effortlessly by myself for fun....I am still in the process of finishing up all of Graham's matters, I know how to do this, but all I could do is stare at my pile of incorrect bills (stupid insurance) and cry....I didn't even know where to start.  My color post its and pretty sharpie markers didn't even help a little.  Something that should have taken 30 minutes because of super bowl commercials, took all night and a lot of tears.  I hate this me...I'm pathetic.  I'm not being a good example for my daughter...to take life by the horns and go for it...don't cry, solve.

I have moved on to a second opinion at UT SOUTHWESTERN-  AND I'M IN LOVE WITH MY NEW DOC AND FACILITY!!!!  I KNOW I'M IN THE RIGHT PLACE!!!! I even geeked out and wore a UT shirt the first day - ha, DORK!  I did learn that I am having partial blockage/blindness due to swelling - so at least I have some what of excuse for all those damn walls that keep getting in my way.

They met about me at their oncology board last Friday and all doctors agreed, Janet was misdiagnosed and she is actually at least a Grade 3 Glioblastoma....I go in for a biopsy of this new spot on Wednesday and they hope to have all past and current pathology reports done by that evening and a real plan in place to get this shit out of me by the end of the week.  I am once again feeling hopeful....I even made a to do list (yes, with different sharpie colors) to give me something to look forward to!  Now, if they want to suck a HUGe biopsy out to get as much of these Janet babies as possible...GO FOR IT!  Because I am so ready.  Crank up the radiation to burn her up; give me the chemo soldiers to fight her down, and now I'm taking pancreatic Enzymes like my idol aunt sweetie to give my body an even bigger fighting chance!!!!  So TAKE THAT CANCER - you suck and don't stand a chance.  I've got a precious little girl and AWESOME life to live.

In Mansfield, the first monday of the month is dedicated to those we love and support fighting some battle (cancer, or disease).  Today was really hard for Jordy....As we picked out what she wanted to wear she chose a Gray( Brain Cancer) Rock CF (for Daddy) shirt and cried.  "Why do BOTH my parents have to suffer?  Why has God not healed you yet mommy?  Why?  I almost lost my words - I've been waiting for this, but as I have learned enough this year, you cannot prepare yourself for ANYTHING!

#colors for caring  #rock cf

I went back to my summarization of the Book of Job...God can't heal all of Satan's doings over night...but he can help prepare us and give us the right tools so that we can fight....we just have to be patient.  So she wore her shirt with a proud and heavy heart...and 2 black eyes.  She isn't all Graham....she struggles with walls too :)  We hugged and made plans for when I'm better...SCOTLAND!

Again, we are so blessed to have so many amazing people in our life.  Thank you...and  thank you for allowing me to apologize every 5 seconds, because i do feel guilt...I know how hard it is to live a non sick normal life (that i dream of to do again) and then to add in help for my village - thank you.  And thank you for those who skip over my temper tantrums and tell me like it is - I NEED THAT TOO!!!  Favorite words this week:  You are over reacting to 8 year old soccer....haha, yes I was, and thank you...someone had to fill Graham's shoes on that one.  But i agree and will go back to me on that one...she's having fun, that's all that matters!

Not the Weather :(

Went to get the results from the MRI done Friday yesterday; and sadly, it wasn't the best news.  Not yet the worst news, but will have to have a Perfusion MRI done next Tuesday to hopefully pin point what is going on.
 The MRI showed "activity" in the Parietal Lobe that is located right behind the temporal lobe that was removed because of tumor.  This "activity" was not there in any other prior MRI and is not showing up as large as Janet.  So what it could be is inflammation.  The Perfusion MRI (Perfusion is defined as the passage of fluid through the lymphatic system or blood vessels to an ... More recent developments in CT and MRI have meant clearer images and solid data, such as graphs depicting blood flow, and blood volume) - yep, didn't help me understand it anymore either.  

But....the AWESOME DR. Waghela already has a plan in place!!!!  She recommends radiation if it's anything but inflammation so we can knock the f'ing cancer out of my brain hopefully FOREVER!!!!   And she answered almost ALL of my questions....you know why???  Because she asked my same questions to the Team Board mtg (meeting with her group of neurosurgeon, neurologist, and a couple others, similar to Graham's Transplant team meetings).  Headaches, vision and mouth issues are because during surgery, Dr. Meyrat not only had to cut the muscle, he had to flap it over (barf) just to get to the temporal lobe, therefore, headaches are definitely expected. Apparently he told me this before...and apparently, he showed me the picture of it, and didn't pass out....WINNING!

On top of all this, I thought I came down with the flu....different type headaches (more of pressure) not knife stabbing, with fever and aches...flu...right???  NOOOOOOOO It can never be that easy, not for me.  Of course, I get a Bladder Infection - how the heck to you get one of those!!!!  The sheer amount of water I drink in a day and consequently go to and from the bathroom, how in the world!?!  But why not...lets add something else.  Last night I went through some of the worst pain I have ever experienced.  I almost made my momma take me to the ER.

Praying for Inflammation...praying Janet didn't leave any Janet siblings or babies in my brain.   I'm scared again, but at ease too, My Neuro Oncologist is so on top of this, I trust her completely and she makes me feel safe and a hopeful again.  This does take my quest for normalcy back a few steps: ( but...on a good note - ADHD and OCD are showing signs of return...yay, when you live your life for so long a certain way, with different strategies and coping mechanisms for said ADHD/OCD  you almost forget how to function without them.  Luckily, I know the right people to call at midnight and cry to when I stare at a piece of paper that I should know like the back of my hand (such a cliche phrase....does anyone really know the back of their hand without looking at it?).  Yes, I did this, and  my sister in law Andrea came to my rescue and sorted out all the insurance paperwork I still need to complete on Graham.  

SOOOO many people that I am completely indebted to and will live my life making it up out of pure joy...because they have all saved my life in more ways than one.  XOXO

Scratch That

Right after I have this epiphany on my life and feel a little bit better about it, I read Jeremiah 29:11:
"For I know the plans I have for you," declares the Lord, "Plans to prosper you and not to harm you, plans to give you hope and a future."

Not to be a Debbie Downer or anything...how are my current plans not harming Jordan or me, but giving me hope for a future?  I reassure my daughter every day, several times a day, that it will all be ok.  But I'm scared....what if they are not?

On another note...I have learned how to successfully eat my favorite fruit - banana- without either getting a horrible headache, smashing it up like a baby, or shoving it in my mouth so I don't have to open wide, and then having banana literally all over my face and clothes, picture a baby eating spaghetti.  Now...no one should ever  have to witness me eating a banana before this new technique, however, this new one ain't any better.  I thank my mom, brother and sister in-law for the idea.  You see, Scott and Kathie sent me a big box of movies and inside of that box was the movie Big with Tom Hanks.  Well, my Mom's favorite part, that makes her giggle uncontrollably, is when Tom Hanks eats the little corn, which I don't know the name of but is always an hors d'oeuvres.  Or the method of pinching the banana and DID YOU KNOW IT EASILY BREAKS APART INTO TINY PARTS!!!!  My world was blown.

Tom Hanks TOTALLY makes it look better than I do

Now, why do I have to do this?  Because to get to Janet, Dr. Meyrat had to cut the temporalis muscle that is covering the hinge of the jaw.  This also affects my vision because it hurts to move my right eye.

A little Biology lesson for you...

I am patiently (ha...nay) to go to see Dr. Waghela (LOVE HER) tomorrow to get some much needed answers.  #1: why am I having these horendous headaches.  #2 I have now switched from sleeping 15+ hours at night plus naps to insomnia with small naps- UGH, why?  #3: I would LOVE to have a new neurologist, one that listens to me better.  #4 - ???:  Totally forgot those, hoping my Momma remembers them :)  I have been told and I am 100% confident it's true, that the headaches are from the weather changes.  But I had an MRI on Friday to negate any doubt that Damn Jan has returned.  I get those results as well.

God's Plan

I grew up hearing, God has a plan for you, God's Plan for you, etc, etc....And this never really frustrated me until as of late.  Those words actually comforted me, knowing God had me in his hands, and he had already crated a plan for me.   I trusted that he wouldn't fail me, and my life would be good.
Then come the past 2 years. Where we did see our ups and glimpses of hope, but in the end, the downs won and we lost.  How could God ever plan to have something like this so horrible happen to anyone of his creations?  For a child, that he created, grow up without a father; and now she has to watch her mother be constantly sick and tired.  How could he????

A dear friend told me to read the book of JOB (that's Jobe)...and then it all clicked.  The Devil/Satan...he is real too.  God didn't make this plan of struggle and death for us, he saw it, and then tried to soften it.  He couldn't stop what was already in motion, but instead led us to make decisions to better ourselves and our support, or intervene and stop something that would have not worked out in this current situation.

My thoughts:  God knew our timeline.  When we began to look for a new home, we were looking for large plots of land, few neighbors nearby, but a place to run free on the four wheeler.  We never did and against all bidding war odds, we landed our new house with neighbors anyone would dream of having.  We are ALL friends, even getting together for random surprise parties, or doing impromptu Pot-Luck dinners.  My WatersEdge family has been so loving and supportive through all this crap...My love for them was already large, but now...I am so grateful God put us here, knowing we would need them.  A second save...I was looking at attempting to leave my current work place to work at a school closer to me.  Because my hope was so large - I thought that if my drive were under 5 minutes vs the 15 it takes me to get to my current campus, I could care for Graham more.  But God saw that I would still need my close friends and Perry family, so he kept me there.  And I am so grateful for them and that too - WHAT WAS I THINKING!!!  It's so rare you get to work with your closest friends!  And these beautiful women continue to teach me how to be a better Mom, friend, and person.  I'm soooo glad God had me stay there.  And then there is the ADHD Dog Sadie of ours...you see, we had this dog named Bocephus (the world's BEST DOG - anyone who has met him would share my same sentiment); and we were talking about getting a new pit bull, and new AWESOME companion, but thought that we should wait a year or until our other little dog Roscoe passed (poor thing was dying from Broken Hearts disease/stress, he and Bobo were extremely close).  But we didn't, we saw a sweet lil puppy face that we couldn't pass up...so we bought Sadie in December of 2014- another one of God's nudgings.  Once our Vet diagnosed her  ADHD, we kinda started 2nd guessing ourselves...I mean...SHE HAS LEARNED HOW TO COMPLETELY LEAP OVER OUR COUCH, OPEN OUR FRONT DOOR, RING OUR NEIGHBORS DOORBELL - all to go swimming at their house.  Some say - wow that's a smart dog...I say...WTF!?!?  But through this latest spell of misery with Janet, Sadie has become the sweetest, most intuitive, and caring dog.  Everywhere I go, she is there.  When I lay down, she is beside me and will drape her head and paw as if holding me.  If I call for someone in the house, she runs to get them.  She senses when Jordan is upset and solemn and will go to her and do the same. I'm sorry God it took me time to see all the wonderful things you have put in place to help us get through this difficult time.  Though I still hate that Graham is no longer physically here and that I am having to go through what I am - I now see that you didn't plan this, that you are helping us fight in comfort.

Frustration and Depression- Stupid Pity Party

I now understand everything Graham was going through mentally last year.  He would go through times of being irritable, thinking he's worthless, then break down in tears and be frustrated.  I now understand, because I'm going through the same thing.  And nothing helps except sleep, to escape and hopefully wake up in a better state of mind.  

For me, I am blaming a combination of meds - Kepra (the anti seizure med I am now tapering off of) and the high dose of steroids they have me on for headaches.  All Jordan wanted to do today was watch a movie (easy...I can do that) and play with some of her new Christmas presents.  Of course these need parental guidance!  And that's where the mental fight comes in.  I'm tired and just want to sit on my ass and either play a game on my phone or take a nap; and all Jordy wants to do is be a kid. It's not fair to her for me to be so irritable...what she is asking is NOTHING, and I'm making a stupid big deal out of it.  This frustrates the tar out of me...she deserves a good life with an active Mommy.

I am anxiously looking forward to this "end in sight" that I have kind of created.  First of March; apparently I get to drive, I will try and go back to work, and my life will be normal (hahahaha- yeah right).  But as they say, "If you think you can do it, you can."

I am ready for my daughter to be happy again, I am ready to lead a "normal" Erin and Jordan life together, I am ready to not have to rely on someone for almost EVERYTHING!  Thankfully, I don't have to have reassurance that I am on the toilet...woohoo, there is one freedom...potty by myself; well, except for a dog; why do they always have to join?  Jordan actually had to help me into my PJs the other night because Damn Jan couldn't figure out what to do!  And now...I'M GROWING A STUPID BEARD!  Why does THAT have to be a side effect of ANY MEDICATION!  As if my life weren't out there and embarrassing enough, lets add a man beard to the lady.  AND because of depression eating post funeral and steroids that make me eat constantly, I now weigh what I weighed when I was 6-7 months pregnant with Jordy.  Maybe I'll become a Carny...Big Bearded Lady in the turquoise tent.

Yes, this is a pity party! However, I am highly embarrassed that I am having it.  Hopefully I will find my big girl panties and but them on and deal with it.  I have been blessed with good news.  I'm alive and besides having to change some of my everyday eating, beauty and cleaning habits; I do not have to fight for my life as of now.  And hopefully, with all these changes, Janet will NEVER come back and I will NEVER have to fight for my life.  

Here's to focusing on the positive!

I think they removed my ADHD...

And I miss it...I am now unable to focus on anything moving, where before if it moved, I not only saw it, I named it my glittery squirrel!  This kept me up with my cat like reflexes; And also entertained me.  One thing Graham taught me how to be a professional at was, laugh at yourself or my fear and anxiety of being perfect will destroy me.  So I did, and I miss it.  Everytime I would run into a wall or lose a shoe I was wearing, I laughed hard, I mean the belly laugh hard.  Losing my keys would piss me off though.  With my ADHD came OCD...and dang, I REALLY MISS THAT!  My house is a total disaster, and I see that it's a disaster, and I know the pre Janet me would be cleaning and would fix this problem.  However, with the OCD gone, I could give 10 craps and the junk just keeps piling up!  My poor neighbor came over and cleaned my kitchen, I think the embarrassment of that has kicked me up a notch.  So that leads me to a Science Problem: Is ADD/ADHD a product of the temporal lobe?  Or is the seizure medication I'm on completely numbing it all?  I am currently investigating (when it doesn't hurt to read) and also tapering off of my medication; so I'll let you know what my "experiment" tells me.  I may not shake my leg constantly or constantly roam around the house trying to find something to do so I can procrastinate, but I still can't sit and focus on the TV and I am still not doing all the paperwork I need to be doing for Graham.  One of my coping mechanisms for my ADHD has always been really cool pens/sharpies and bright colorful sticky notes - THOSE AREN'T EVEN WORKING!!!  Sadie did chew up a green one though, at least it was in the dining room where my walls are green.

I realize I just had brain surgery and part of my brain was removed; however, that was 5 and 1/2 weeks ago.  I am still tired and in pain, and now, I feel worthless and I hate that.  I have always been a strong and independent person who could do anything that I put my mind to.  Now, I can't even take care of my child.  I hate the fact that it takes all my might to help her with school work, packing a lunch, signing her folder, and worse...I cannot take her to and from school or soccer.  I hate that I feel like a 12 year old and if I were to drive (which I haven't) I would have to sneak out of my own house and be afraid to run into anyone I know that could tattle on me to my parents.  But when I do finally cave and ask someone to take me somewhere...it can be a good thing....

Because my tumor has been diagnosed "environmental" (meaning, the outside world of pollution, hair care, skin care, and food have caused it) I am changing a lot of my routines, SO HELLO RETAIL THERAPY!  As a dear friend said #makeupnotmasses  - I will definitely take advantage of this.  So I've added a new box to my soap box collection.  I still plan on lobbying for Medicinal Marijuana (because why would anyone sick that already has too many chemicals in their body; have to add more chemicals when an herbal, natural plant, can do the same thing!).  But now, my new soap box will be for chemical free beauty products.  And here is why it makes sense to me: Graham was on a Fentanyl Patch, which is an EXTREMELY potent chemically made opioid, all in a little sticker (just like a nicotine patch, or those new vitamin patches) that you put on your skin.  Your skin absorbs these chemicals and they then go into your bloodstream.  ALL THROUGH A STICKER!  So why wouldn't the face and hair products (along with lotions) do the same thing?  Makes sense, doesn't it.  So, I am changing all of my makeup, hair and skin products, and I had a blast with Graham's mom Barbara at Ulta!!!  Playing with makeup is so much fun!  And even though I rarely put it on anymore (the dogs and cat really don't care how I look) I did get to put it on Jordy for 80s day today; and I felt good knowing that I was not harming her in anyway.  After Ulta, we went to Marshalls of all places.  They RANDOMLY have a FABULOUS selection of chemical, GMO, and Paraben free products.  So I came home happy and had soup with my girl.

One day, I hope the OCD comes back.  I miss being super organized and together.  But I guess, baby steps to the corner. UGH