Saturday, December 28, 2013

A look back...

So this will be a short post because Jamie and I plan on snuggling up on the couch and watching a movie tonight but had to look back as our lives were turned upside exactly two weeks ago.

Hard to believe how quickly things can happen.  It was two Saturdays ago, December 14th.  Just a normal day.  I got my hair cut and colored that morning and then Saturday night we met up with family and friends at Country Springs Hotel and drove through the lights display.  Got home and put our boys to bed.  Jamie and I went to bed that night around 11pm just like any other night.  I had to check with Jamie on the timeline below as i have VERY limited memory of the events but it's so eery thinking back to how quickly it happened and how it all came out of the blue.  

Sunday, December 15th around 3am 
I woke up and my left foot was numb, like it felt like it was asleep but REALLY asleep.  I got up thinking that I had slept weird, pinched a nerve or something.  As I walk around our house I get more and more nervous about how weird my leg feels.  Soon I start to loose feeling in my foot all together.  Jamie comes out to check on my, I tell him I am fine but that I am going to lay on the couch to see if that helps.  Jamie crawls back into bed and I go to the bathroom a few minutes later.  In the bathroom I get very confused.  I remember that I kept walking in a circle right by our toilet.  I kept walking around and around and kicking our metal garbage can into the toilet.  I knew in my head that I was walking in a circle but i couldn't stop my body from doing it.  I call to Jamie for help telling him that I can't figure out how to get out of the bathroom.  Jamie comes into the bathroom and tries to help me to our bed which is like 7 feet away.

I go into a grand mal seizure. My entire body starts convulsing.  Jamie tries to lay me down while he grabs his phone to call 911 but I am foaming from the mouth and he struggles in the dark.  

Paramedics arrive and immediately load me into the ambulance and take me to Elmbrook ER.  Jamie is stuck at home waiting for his sister to arrive at our house to stay there since Owen and Jacob and still asleep in their beds.  Jamie has no idea what is going on with me, when I left I was barely conscious and had no idea who he even was as they wheeled me out the door. 

Sunday, December 15th around 4:30am
I am rushed into an emergency cat scan at Elmbrook's ER.
Jamie arrives at the ER while I am in the cat scan, nurses tell him I was asking for him and he is so happy to hear I was asking for him.
I am wheeled back to the ER triage room to be with Jamie, my sister and her husband are also in the room at this point.

Sunday, December 15th around 5am
A doctor informs us that I have a brain tumor, a large brain tumor.
Jamie immediately requests I be transferred to Froedert and they get an ambulance ready to take us there. 

Sunday, December 15th around 7:30am 
I arrive at Froedert and am admitted to neuro ICU
We spend much of the day doing numerous MRIs and cat scans so the doctors can get a good look at the tumor and what they are dealing with.

Monday, December 16th around 9am
My head is shaved and prepped for surgery.
I am wheeled down for a 2 hour MRI that will map out exactly where they will be operating.

Monday, December 16th 1pm 
Surgery begins, my family waits and received updates.  Jamie is able to come and see me in recovery around 5pm.  The doctor says that surgery went well and that they got 6 different samples for the biopsy and that we will just have to wait and see what we are dealing with.

Tuesday, December 17th
I head home, still dazed and confused.  Apparently I was totally with it soon after surgery but I didn't even remember ANYONE visiting me at the hospital other than Jamie.  I don't remember the ride home from the hospital in Jamie's truck, I had no idea who was here watching our kids when we got home.  It was all like a strange dream.

And here I am two weeks later, it's just surreal.  I can't explain it, how this feels that this happened.  I still feel like it's a dream.  When looking back at old photos of myself I keep wondering when the tumor started.  Looking at photos of me holding Owen in the hospital when he was first born, did I have a brain tumor then?  It's just so strange.  I can't help but think that God has a plan for me.  He has certainly lit a fire in me these past two weeks.  I feel like I have been given an incredible gift.  A new way of seeing everyone and everything.  

Now it's the weird task of returning to normal.  Seeing all the important people in my life and feeling normal again.  Hoping I don't just cry when I see everyone at Owen's school for the first time, hoping that things just go back to the perfect normal they were before.  

My goal is to get back to 100% quickly.  Owen will be admitted to Children's on Tuesday January 14th to start his week long work up to see if he will be a good candiate for surgery to eliminate his epilepsy.  I know he has caught on that something is wrong with mommy and I don't want him to be scared when he is admitted and hooked up to an IV and the EEG.  I need to be his strong mom, that holds his hands, dances like a weirdo and shows him that everything will be okay.  Jamie and I have been so scared at the thought of putting Owen through a brain surgery, it's nothing to take lightly but I feel like I have been shown a little glimpse.  I have been given a taste of the seizure medications that Owen has been on for 3 plus years and they SUCK!  I have had a seizure and I know how terrible it feels, how scary it is and how scared I am of feeling things in my body now.  If surgery ends up being a good option for him, I think we owe it to him to give him a life free of seziure meds, free of stupid seizures.  So I pray that we find answers for him, if he is a candiate there is still tons of testing he will have to undergo so the actual surgery would be months down the road.  It's just so crazy, all of this.  

But we take it one day at a time.  I will get my strength back so I can be there for Owen and then once we get through that we will worry about me making it through radiation and we will all be there for each other as a family, our perfect little family that can take on anything.

AND... just because this can't all be so sappy.. i can't WAIT to get off these stupid steriods!  Not only do they keep me awake at night but they have me SO on edge.  The neurosurgeon confirmed that it is DEFINITELY the steriods that are making me so crazy and it's not some change in me from the surgery but my patience is LOW, LOW, LOW!!!  Sounds drive me nuts.  To the point that last night Owen was slurping his grapefruit, the sound was so maddening I had to cover my ears and I actually starting shaking and crying in anger because I felt like I was just going to freak out over the smallest sound.  It sucks.  BUT it also has turned me into a cleaning MACHINE!  The doctor said this is the #1 "side effect" he hears from people, that they just can't stop cleaning.  I literally can't stop cleaning!  Today I even took down our blinds from our room and washed them all in the bathroom and hung them to dry.  So if anyone wants me to do some deep down cleaning projects around their house, just give me a call.  

Okay, off to watch our movie!  Here are a  few photos that I pulled of me and my guys.  Poor Jacob is really getting annoyed that I can't pick him up.  Really poor Jamie is paying the price.  Jamie can't even go to the bathroom without Jacob laying right outside the bathroom door kicking and screaming.  We have had some pretty interesting changes in personalities around here lately.  :) 

(I didn't go back and proof read this, too tired, i blame any and all errors on my brain tumor.)



  1. Can't believe 2 weeks have gone by! What a relief to finally have a plan and know what lies ahead in the next few months. Let's continue to look forward and stay positive. Radiation will be difficult but it's nothing that you can't handle, you will not go through it alone sister!! Can't wait to get home, help you and just spend much needed quality time with my loving, caring sister. XOXOXO

  2. I am just starting to read about your journey since diagnosed with a brain tumor. I also have a brain tumor. It is a very rare inoperable benign one - trigeminal schwannoma. I was initially diagnosed at Froedert but when I asked the neurosurgeon how many of my specific tumors he had treated he answered, "None." I told him I wanted to get a second opinion and he was fine with it. I researched brain tumor medical centers and decided to go to the Mayo Clinic in MN. It is a 4 hour drive from here, so, not too terrible. I had Gamma knife stereotactic radiation in July '08. I went to get a second opinion about surgery at JOhns Hopkins in March '09 as I still have excruciating headaches daily. All my follow up MRIs have shown no further growth and finally, this past July, "slightly smaller!" I wish for you great results from your treatments. I understand the anti-seizure meds, I take 3600 gabapentin daily. I still don't drive too far. I don't have small children to care for. May you have as much innerstrength as you need.


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