Happy Brain Surgery Anniversary

Its hard to believe it's been a year since my brain surgery.

A whole year.

365 days.

52 weeks.

8,760 hours.

525,600 minutes.

It's hard to wrap my head around that number.

In some ways it feels like it happened yesterday 

and I can vividly remember my terror and pain (oh the pain!) 

and then in other ways it seems like it's been a really long time.

I get asked often how I feel.

And I've often struggled with what to say.

Physically it's fairly easy to explain:

• My right eye still doesn't tear {one eyed ugly crying still} & the right side of my mouth doesn't produce enough saliva so I use eye drops and a special mouthwash several times a day to help.
• I struggle with some pretty awful headaches- especially when I'm overly tired and stressed. These aren't normal headaches- they are always on the side where my surgery was and nothing really helps to get rid of them except time and rest. I think that one lesson I needed to learn was to slow down and say no sometimes and the headaches remind me of that lesson when I forget.
• I'm totally deaf in my right ear and that's probably been the largest daily reminder. Best part of being deaf in one ear? Put your good ear on the pillow when you go to sleep and you sleep LIKE A BABY! Learning where to sit in a place with lots of people talking {restaurants, conferences, church, etc} and learning to walk on the right side when walking with someone is becoming more normal as time passes. In super noisy spaces I have a really hard time hearing people talking to me which I hate but I'm learning to deal with. Getting used to everything being so stinkin' loud has definitely taken getting used to. I expected the opposite to be true- that everything would be super quiet but instead everything is loud- especially people on the phone. It's because all sounds are funneled into one ear instead of balanced out among two.

Emotionally it's almost impossible to explain.

Do I feel grateful? Absolutely.

Do I feel thankful? Definitely.

Do I feel relieved? So very much.

Do I feel blessed? Beyond measure.

But there's so much more to it.

As I was reading Ann Voskamp over this past year

{I heart her so!}

a word she uses often struck me as the perfect word to describe how I feel.

Quick definition from Ann:

The root word of eucharisteo is charis, meaning “grace.” Jesus took the bread and saw it as grace and gave thanks. He took the bread and knew it to be gift and gave thanks. Eucharisteo, thanksgiving, envelopes the Greek word for grace, charis. But it also holds its derivative, the Greek word chara, meaning “joy.” Charis. Grace. Eucharisteo. Thanksgiving. Chara. Joy.

Joy.

Charis.

Grace.

Thanksgiving.

Eucharisteo.

As I write this this morning, I am weepy and overwhelmed with thanksgiving. 

I am thankful that God is able and that He carries us when we can't walk on our own. 

I am thankful for my amazing friends and family that walked me through one of the darkest times in my life. For every prayer uttered on my behalf, for every meal brought to feed my family, 

for every minute sat in the hospital waiting as I was in surgery, 

for every sweet note, text, or email, for every sweet gift given to me, 

for every hug I am thankful. 

I am thankful for every awful headache I get, because it's a reminder that I am still here, 

that the outcome could have been so very different. 

I'm thankful that my story has a happy ending 

but am even more thankful for a God that is good and able 

even when the ending is not as we have hoped and prayed.

He is able. 

So remember that one day.....when I had brain surgery? {Part 3}

So remember that one day.....when I had brain surgery? {Part 1}

So remember that one day.....when I had brain surgery? {Part 2}

My super sweet, precious friend Gina is writing this next part, 

because after being wheeled down the hall, 

I remember nothing until I woke up many, many hours later in recovery. 

She is one of the best gifts God has given me

 and although I hated her taking time off to spend with me during surgery & recovery,

I honestly don't think I could have done it without her. 

She is one of my greatest earthly blessings. 

Hi, I’m Gina. You have heard Shannon mention me a few (hundred) times over the years – either by my name or by my nickname – Dory. We’ve been hard and fast friends for many years now so when she was facing this surgery, I had to be there to offer anything I could – support, love, care-giving, whatever she needed. 

To pick up where she left off, being wheeled away to surgery – I have to confess something. She was so blissfully unaware that she could possibly die during the surgery while I, on the other hand, was painfully aware of that fact. In all honesty, (and this is something I’ve discussed only with my husband prior to writing this) from the moment the surgery date was scheduled, I grew more and more worried about death. That particular week of September is an already hard week for me – Sept. 18^th is the anniversary of a childhood friends’ mothers’ passing, Sept. 19^th is the anniversary of my dad’s death, and Sept. 20^th is the anniversary of my father-in-law’s death… so when I heard Shannon’s surgery was scheduled for Sept. 17^th, it literally took my breath away for a second. I kept reminding myself that God was in control and that I should rest my faith in Him but during the dark moments, it was hard to hold on to that. After she was rolled away, Tony and I both had a moment of complete and total breakdown. I can’t speak for him but in my case, I’d been trying to remain strong for her the whole time but the second she was out of sight, I lost it!

The day was spent surrounded by Shannons' family and friends in various waiting rooms. I had a crochet project with me and although I usually find crocheting very relaxing, I don’t think I made more than a dozen stitches all day. I held it my hands and looked at it a lot but I just was too keyed up to actually work on it. At some point during the day, I was looking out the window, praying in my head and my eyes landed on this cross atop a nearby building and I was flooded with a wave of relief. It was as if God used that moment to reassure me all would be well. After that, I find myself sneaking glances at the cross throughout the day – making sure it was still there, I guess. Looking back on it now, I think I was hoping for another wave of relief!

Shannon had planned several random acts of kindness for Madison and her friends to give out throughout the day – at some point during the day I entered an elevator to go find coffee and saw this sweet note posted inside by one of the girls – it made me smile. Even while Shannon was unconscious during surgery, her sweet heart for others was being well represented!

A nurse came out for our first update on Shannon around 10:30am. 

Tony and I followed her back to a private for room for her to say: 

The surgeons began at 7:49am, there were no problems with anesthesia. 

They are still working on the approach - meaning removing a piece of her 

skull and trying at access the tumor deep within her head. 

After Tony and I told the group, we all spent some time rejoicing that 

all was going well and breathing collective sighs of relief all around the waiting area. 

Our next update came around 12:20pm: 

We just heard from the nurse - both surgeons (Dr. Demonte and Dr. Gridley) 

are in with her now. They have reached the tumor and are resecting it. 

This was described as 

"try to imagine removing four strands of hair from a wad of chewing gum". 

Her vital signs are stable and all is well.

We were told this part could take several hours so again, we all rejoiced for the good news and then went back to patiently waiting for the next update. It’s really remarkable the number of people waiting in our group. Quiet conversations were taking place in small groups of 2 or 3, not to disrupt others who were also waiting on news about their loved ones. 

The next update came at 2:30pm:

  After nearly 7 hours, the tumor is out and the surgeons have begun closing. 

This can still take quite a while, as much as a few hours.

 But the news that they are closing is AWESOME!

We had barely told everyone when Tony and I were called back to the room to see the surgeons. We had been expecting a much longer wait than 20 minutes so as we walked back, I was thinking "Noooo, they shouldn't be done so quick....something must be wrong....noooo". Both surgeons shook our hands and sat us down and told us IT WAS OVER and SHE WAS FINE!!! They told us that all the tumor was removed and her facial nerve was fully intact! I was ready to burst with relief and I know Tony was too! As they said their goodbyes - I said, "Wait here one sec, please, I have something for you!" I ran back to get some of the cookies Shannon had made to give out to those who helped care for her while in the hospital. The look on their faces was priceless! Both thanked me and said they were starving and I saw both of them start to tear into the wrapping as they walked away. It made my heart sing!

We were directed to another waiting room outside the ICU area where she would be once she was moved out of recovery. Tony saw her first, right when she was brought in. If you've never seen anyone as they wake up from anesthesia, it's a little unnerving. When I saw her a few minutes later, she spoke to me right away. She was telling me that her arms felt funny, but couldn't quite think of the word she wanted. She'd say, "My arms have four hundred...." I said, "pins or needles?" (thinking they felt asleep to her and tingly) She's say, "No" and then "my arms have four thousand..." and I'd guess another word. Then "my arms have forty hundred...." I started getting tickled because whatever her arms had was getting bigger each time she said it! As others started going in to see her throughout the next few hours, (only two at a time were allowed in ICU) they'd come out and say "What's up with her arms? She kept trying to think of a word". Let me just tell ya, all these months later, we've never figured out what the heck she was trying to say!

Her family and friends said their goodbyes as the evening wore on and Tony eventually left to get some sleep. I spent that first night with her in ICU, listening to the machines beep. It was a tough night, with her pain medication barely making a dent in the Texas-sized headache she had! She kept saying, "If only I could sleep!" Between the machinery and all the people checking in on her every few minutes, it was a long miserable night for her. She said, "I was so worried about my facial nerve and all the preparation that went into knowing I'd be off work and stuff, I never once thought about how painful it would be but I'm not kidding y'all, my head HURTS!" Needless to say, I'm glad for the things she didn't think of prior to the surgery!

I'm so thankful for the surgeons and all the caring staff at MD Anderson. It was such a blessing to be in capable hands and for such fantastic results! Praising His name! 

So remember that one day....when I had brain surgery? {Part 2}

So remember that one day.....when I had brain surgery? {Part 1}

I took a sleeping pill hoping it would help me sleep that night 

but I tossed and turned most of the night. 

It's funny but as nervous as I was about the surgery & outcome, 

I was mostly worried about my friends and family.

I HATED thinking of them sitting 

and worrying all day while I was in surgery.

HATED it with a white hot firey passion.

So I would try to sleep and then I would start to worry and then I'd pray.

Worry. Pray. Worry. Pray. Worry. Pray.

over and over again all night. 

We had to check in at the hospital by 5:30 am so we were all up by 4:30am.

I took a quick bath and got dressed and snapped a pic to post.

If someone had told me before this that I would ever post a picture 

of myself without makeup, I'd have said they were super stinkin' crazy.

Right before I posted it I remember thinking how insignificant how
I looked was in terms of what was about to happen. 

Nothing like a brain tumor to give you some serious perspective.

 I remember wondering as I posted that pic if it would be my last picture 

with a full smile and oh how I prayed it wasn't.

{That was one of my biggest fears- not being able to smile anymore}

We packed up, checked out the hotel,

 and arrived at MD Anderson and checked in.

I was quickly sent to a room where I changed into a gown 

and those super snazzy compression hose.

I had taken some anxiety medicine 

{praise The Lord for that medicine those last few weeks} 

but I remember getting super anxious at this point. 

I could only have two people in the room with me at a time 

and I remember panicking that I wouldn't get to hug everyone 

who was there and tell them how much I loved them before surgery.

The next hour was a parade of doctors and nurses coming in to talk to me

 mixed with sweet family and friends coming in to love on me, hug me, and pray with me.

 I was so blessed to have an amazing amount of friends and family there that day 

and although I hated that they had to sit there all day, 

it was a tremendous comfort knowing they would be there together.  

Everyone from my sweet daddy and his girlfriend to my ex husband and his parents

 to my daughters friends to my work friends to my church friends 

to my daughters drill team directors to my sister

 to my precious in-laws and sister-in-law were there. 

{I'm told there were so many people that they had to split between 

three waiting rooms and boy do I hate I missed that party!}

I'm pretty sure a girl has never felt more loved than I did that day. 

I was truly overwhelmed.

Both surgeons came in and one wrote YES on my neck to indicate 

which side they would be operating on.

{I'll be honest, at this point I was thinking NO.}

Since scheduling surgery I had been crazy worried about was having my facial nerve cut 

(which would mean many more surgeries 

and a host of additional problems for years to come) 

or other complications that would make me, not me anymore.  

There were lots of possible complications and side effects that could happen 

but facial paralysis was the one that I worried about the most. 

I remember talking to one of my surgeons that morning and 

reemphasizing to him that if he needed to leave a piece of my tumor 

in order to save my facial nerve then that was my desire. 

I clearly remember the odd look on his face as he explained to me

 that his goal was to save my life and remove the tumor - not to save my facial nerve.

It's funny but up until that point I really hadn't thought about dying.
At all.

I remember thinking.......
Wait, you mean I could die during this?

I know those of you reading this are probably thinking 

DUH- of course you could die during brain surgery you ding dong.  

I can't explain why but I had been so focused on everything I had to do to prepare

 for surgery and to check out of my life for several weeks that it truly didn't cross my mind. 

I'm thankful it didn't and think that was a little gift from God.

All too quickly it was time to say my final goodbyes

 and I remember crying as my precious friend Betty prayed one final time

and said my I love you's and I was wheeled away.

As they wheeled me down the hall I remember singing in my head 

a song I had been clinging to for weeks.

A reminder that God was with me always
and I had nothing to fear. 

So remember that one day....when I had brain surgery? {Part 1}

It's been almost five months since my surgery. 

{If you don't have a clue what I am talking about

you can read all my brain tumor posts HERE.

Just scroll to the bottom and start reading up.}

As I type that I think...

Wow, seriously? Five months?

It seems both a long time ago and just yesterday.

It dawned on me after getting a bunch of sweet blog reader 

emails this past week and weekend that I hadn't really 

ever written a post about my surgery and recovery. 

And y'all, I'm so sorry!

Recovery was CRAZY hard work in the beginning and
took every bit of energy and concentration I had.

Then once I started feeling better, I went back to work and I was crazy TIRED

 all of the time and there just wasn't any extra time or energy
to do much blog writing or much of anything extra.

There were so many truly amazing things that happened 

and God was SO good and SO faithful and SO gracious through it all

that I definitely want to put it down in writing so I don't forget

all of God's tremendous blessings through this storm in my life.  

So....let's go back.

The Sunday before my surgery my sweet, precious friend Gina flew in to town. 

Her plan was to stay as long as I needed her.

Have you ever had someone do something so amazing

 for you that you'll NEVER, EVER be able to repay them?

 I have. 

My precious friend Gina put her life on hold, left her sweet family,

 took off from work, used vacation time simply to come be with me and 

help me through surgery and the first few weeks of recovery. 

Each time I think of all that she's done for me- 

waking me each night at 3am to take my pain medicine, 

washing my hair for me since I couldn't get my incision wet for over two weeks, 

sleeping every other night at the hospital in the worlds most uncomfortable chair, 

fixing my meals, updating my Caring Bridge site-

 and how selflessly and lovingly she did it all I cry. 

I cry because I honestly don't know if I could have done this without her.

 I love her more than she could possibly know and 

although I will never be able to repay her- 

I praise God for blessing me with her. 

She flew in on Sunday and I took her to Buc-ee's 

{Buc-ee's is this crazy HUGE gas station/store that we have in Texas}

.

and a super neat little cupcake food truck in Austin

called Hey Cupcake!

and we just enjoyed a little fun and much needed friend time. 

Monday we prepared to leave town. 

My surgery was at MD Anderson in Houston and we live about 2 hours away.  

I had an afternoon and evening full of appointments concluding with an MRI at 7pm. 

We had to be at the hospital super early the following

 morning before surgery so we booked hotel rooms for Monday night.  

Reality seemed to start sinking in as Gina, Tony,

 and I packed up and left home and I remember thinking.....

"We are driving to Houston so I can have brain surgery.

How is that even possible?

When will I be back and how will I be? 

Will I still be me?"

Madison was still in school and my sweet friend Michelle drove

 her and her two best friends down after they finished school that afternoon. 

{How much do I love that her two best friends spent the long day of surgery with her? 

So VERY much- they are amazing girls and I love them so!}

MD Anderson is an amazing place and as we arrived there,

with me wearing my "It is well" shirt, I couldn't help but think of how blessed I was. 

Yes I was there to have brain surgery but my tumor was treatable and not cancerous. 

It only took taking a glance around the lobby to see that I was so, so, so very lucky. 

Gina and I passed the time between appointments by shopping in the gift shop.

Of course- if there's shopping to be found, we will find it!

While shopping we came across a doll that I simply had to have so Gina bought it for me. 

Now I'm not someone who normally curses but this doll had us cracking UP!

{Please forgive the curse word!}

My appointments went fine until I had to go and get the stickers put on my face. 

I had been told that they would be putting dot stickers on my face 

before my MRI and that I would have to wear them until surgery.  

Y'all I had been dreading those stupid dots.  

Like dreading with a white hot fiery passion dreading. 

I couldn't wash my face, couldn't wash my hair, and I had to walk around 

with what was a very visible indication that something was wrong with me.  

I went in to the office- leaving Gina and Tony in the waiting room-

 and was so relieved when a super sweet nurse that I knew came into my room. 

We chatted a bit as she put the dots on my head and I thought I was going to be okay. 

Then she pulled out a Sharpie and told me she was going to have to 

draw a circle around each dot, just in case they fell off before surgery.

And I started to cry.  

I mean the dots were bad enough, but a sharpie circle around them?

As I cried that sweet nurse put her arms around me and just hugged me

and told me it was going to be okay and that God was going to take care of me. 

What a sweet blessing she was that day!

I pulled it together and walked back out to show Gina and Tony. 

Of course we snapped a few pics of my lovely dots. 

We then went and checked into our hotel before going to my MRI. 

By this point my precious in-laws and my sweet Daddy had arrived.  

We sent them off to have dinner and Gina sat in the waiting room while I had my MRI. 

I was getting over a sinus infection and had a crazy cough

so I loaded up medicine so that I wouldn't cough during the test. 

It was an MRI with contrast 

{basically they do it once and then put contrast in and do it again}

so it seemed to take a sweet forever. 

I spent the entire time praying and singing praise and worship songs in my head

{If you've ever heard me sing, you know singing in my head is the ONLY place I should!}.

Finally it was over and we headed back to the hotel.  

Madison and her friends were there by then and we all visited a bit before

 deciding to try and get a little sleep.  

Let me tell you, trying to sleep the night before your brain surgery?

FUTILE and POINTLESS.

Surgery day!

We are ready to go. Yesterday was a whirlwind of appointments in preparation for today.... the big day.

I'll be posting updates at http://www.caringbridge.org/visit/shannonlong for her as the day progresses. 

- Gina

How Can I do This?

For the last few weeks I've been working on my list of things that need to be done before we leave for Houston on Monday morning.

My list contained lots of things related to work and lots of things related to home.  I know it probably looked ridiculous to some people because it included things like:
-clean out the pantry
-clean out the refrigerator
-clean out my drawers
-clean out the tupperware cabinet
-get a pedicure
-write down a list of all my passwords
-organize my closet

Most of those things may seem silly but I knew that having all of the closets and drawers cleaned out and everything in it's place would make me feel less stressed- plus it gave me something to do to keep me preoccupied.

But now that list is complete. All of my tasks are checked off.  Short of finishing packing my bag for the hospital, I'm as ready as one can possibly be- at least physically.

However, I keep thinking....how can I do this?

When I can't sleep at night I think about those last few hours before I go into surgery and I wonder.

I wonder.....

• How do I hold my sweet baby girl and look her in the eyes and tell her it's going to be okay without absolutely falling apart?
• How do I hug my sweet Daddy and tell him not to worry?
• How do I kiss my sweet husband knowing how difficult the next 12 hours will be on him?
• How do I go to sleep not knowing if I will wake up and still be me?
• How will I handle it if I wake up and my facial nerve has been severed?

I don't know the answer to those questions so I do the only thing I know to do- I pray.

While I'm Waiting

These past few weeks before surgery have been both wonderful and horrible. There are days when I simply cry over absolutely everything and am completely terrified and horrified and others where I'm able to smile and laugh and go on with life as if nothing is wrong and almost forget what is coming in the weeks ahead. Almost.

I know without a single solitary doubt that God will use this time in my life for His good and have already seen some TREMENDOUS blessings come from it. He truly is so very good to allow me to see those blessings.

Anyone that knows me knows that I LOVE more than anything to help and to do for others. Serving and giving are the things that make my heart so very happy and I think are a large part of what makes me who I am. It is what I do and what makes me happiest. Giving I think I am fairly good at. Accepting love and help from others? I am so NOT good at. Like HORRIBLY bad.

I am definitely my mothers child and I remember as she battled cancer watching her sitting in her bed crying one day as I cleaned her house. When I asked her why she was so upset said that it was because she hated that everyone was having to take care of her and do things for her. I remember my response so clearly as I said " Do you get joy from helping others and taking care of them? Well guess what? So do we. You've taken care of us for years and now it's our turn. We love you and it is our honor to do this for you.  And if you don't let us? You are being a joy stealer!"

That conversation has run through my head countless times over the past few months as I have been showered with love by those around me. I have cried buckets of tears- overwhelmed by the kindness of my family, friends, co-workers, and strangers.  I will never, ever be able to thank each person but I treasure every call, text, gift, email, prayer, treat, meal, and offer of help more than they will ever know. 

I could write pages about the sweet things that have been done for me- from my sweet friends who anonymously left gifts on porch every few days (my porch fairies) to the precious friend paying to have my house cleaned for the next two months while I recover to the friends signed up to bring my family meals for the next several months to my amazing, precious friend Gina who is flying in today to spend the next few weeks taking care of me to the literally hundreds of cards and emails and texts and prayers of friends and of strangers I am amazed and humbled and more grateful than I could ever possibly explain.  I have never felt more loved in my entire life.  God has shown me ever single day how much He loves me through all of the people in my life. He is so very good.  

So I'm clinging to His promises. I know the days ahead will be hard. In fact, they will suck. But I also know what God promises. And He is always faithful. 

I have made you and I will carry you; I will sustain you and I will rescue you.
~Isaiah 46:4

Be strong and courageous. Don't be fearful or discouraged, because the LORD
your God is with you wherever you go."
~Joshua 1:9

Wait for the Lord; be strong and take heart and wait for the Lord.
~Psalm 27:4

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.
 ~Deuteronomy 31:6

The Lord will fight for you; you need only to be still.
~Exodus 14:14

When I am afraid I will trust in you.
 ~Psalm 56:3

Blessed is she who has believed that the Lord would fulfill his promises to her!
~Luke 1:45

 But I will trust in you, Lord; I say, you are my God. My times are in your hands.

 ~ Proverbs 31: 14-15

How are you?

I'm pretty sure that if I had a dollar for each person that had asked me recently "How are you?" 

I would have enough money to take a trip. {a nice, long trip}

I LOVE LOVE LOVE that people are so very kind and thoughtful and ask how I am.

It truly makes my heart happy.  I am amazingly blessed with some amazing friends and family. 

But....it also makes me very sad when someone asks that question because I honestly don't know how to answer it. 

Do they want me to lie and just say "Fine" and then move on or do they want me to break down and tell them how I really am? 

I will admit that most of the time I say I am fine. 

But truthfully, I am about as far from fine as you can possibly get. I haven't seen fine in a LONG time. 

So how am I? 

I am....

• terrified
• anxious
• worried
• scared
• overwhelmed
• sad
• nervous

I spend much of my time lately telling my self internally to calm down and not panic because everything in me just wants to sit down and cry.  

Buckets and buckets of tears.

Much of the time I think .....

• How can I do this? 
• CAN I do this? 
• I don't want to do this. 
• I really, really, really don't want to do this. 

Sweet friends keep telling me I'm going to be fine and that I am so brave and strong and that they know God is going to use this for His good. And I absolutely do believe that He will use this trial for His good.  But when people say that- man it is some pressure. 

Because when they say that, I think........

• What if I'm not brave and strong? 
• What if I am the worst patient ever? 
• What if I am super far from inspirational? 
• What if I am mean and cranky and a big old mess and ruin the good God is trying to do through this? 

I feel like it's my job to reassure everyone that I am okay but on top of working and trying to get my entire work and home life in order before surgery plus trying not to completely break down- I just can't.

I want to be brave and resilient and strong- but y'all I feel about as brave and resilient and strong as a new baby kitten. 

So, I'm doing the only thing I know how to do when I'm terrified- praying and clinging to God's word. 

The Lord will fight for you; you need only to be still. 

Exodus 14:14

Wait, what? ~ Part 6

Wait, what? ~ Part 1
Wait, what? ~ Part 2
Wait, what? ~Part 3
Wait, what? ~Part 4

Wait, what? ~ Part 5

Arriving home from MD Anderson 100% certain that I wanted my surgery done there, I placed a call to the surgeons nurse early the next morning. We tentatively scheduled surgery for Sept. 17th-providing the other surgeons were available that day.

I hung up the phone excited that we had a plan- yet with a giant pit in my stomach because I couldn't help but wonder what I would do if my insurance denied me having the surgery there. I knew that since it took forever to get a single visit covered, that getting brain surgery covered- at an out of network hospital- was VERY unlikely. 

Since I work for a school district, our calendar year begins Sept. 1st. We were in our open enrollment period for benefits and as I went through my selections {that very afternoon} I came across the short term disability option. Now I knew that since my brain tumor was now a pre-existing condition, there was no way I could add this coverage but since our sweet insurance lady's office was just around the corner I thought I'd go ask, just to make sure. 

What happened next can only be explained as a true miracle from God. I went into her office and asked if I could add short term disability- knowing the answer was no. And of course she said no.  She asked why I would need it and I then explained that I had been diagnosed with a brain tumor and told her the struggle we had had with our insurance and how worried I was they would deny the surgery at MDA. 

She immediately said "Well you just need to change insurance!" to which I replied "If only I could! I'm pretty sure they wouldn't accept me because of my pre-existing condition. Who would knowingly cover a new member with a brain tumor?".  

She then explained that they had no choice- since it was continuous coverage- they had to accept me! {Had I been a brand new employee, they could deny me- but since I was just changing my option under existing coverage with the district- I could change. She then pulled out the book that listed all of the options and showed me one that had MDA as an in network hospital and even figured out what my maximum out of pocket costs would be.

Who but God could orchestrate that? Seriously.  I wish you could have seen me- I was almost jumping up and down I was so excited! {Well, as excited as one facing brain surgery can be I suppose!}  I left her office, when back to mine and immediately logged in and chose my new insurance.

During the next few days she called that new insurance company, had them input my information as an urgent case (it doesn't take effect until Sept. 1st and normally they don't take any information until then), and even contacted my insurance advocate at MD Anderson to give her all the details.  I've actually already even received my new insurance card in the mail.

How cool is God to work out so perfectly the details? I know that we often read of miracles in the Bible and it's easy to think that He no longer performs them. But oh how He does!

So we are now confirmed for surgery on Sept. 17th which is 3 weeks from today.  To be honest- I am terrified and running around like a crazy woman trying to get all of my work life and home life in order.  Not knowing how I'll be after surgery and how much recovery I will require is scary to me.  As someone who loves to have all of her ducks in a row and a plan for everything this is a beyond frustrating.

Although I don't know what life will be like when I wake up from surgery what I do know is that through this God is in control and I just need to trust in Him.  In His timing and in His plan.  So I'm clinging to His promises....

“So do not fear, for I am with you; do not be dismayed, for I am your God. 

I will strengthen you and help you; I will uphold you with my righteous right hand.”

—Isaiah 41:10

Wait, what? ~Part 5

Wait, what? ~ Part 1
Wait, what? ~ Part 2
Wait, what? ~Part 3
Wait, what? ~Part 4


So after miles and miles and miles of red tape I finally got an appointment at MD Anderson  Luckily I have sweet friends with connections which allowed me to get in the MDA system fairly quickly.  The real hold up was getting my insurance to approve a visit there. After multiple phone calls by more friends with connections, they finally approved a visit.

Once again my sweet Daddy went with me and we arrived at MDA early on a Wednesday morning. The waiting room in the Brain and Spine clinic was full and I realized quickly that I was lucky.  Lucky because I was only dealing with a brain tumor and I wasn't dealing with cancer- as so many people sitting in the waiting room obviously were.

As I sat waiting I got a funny text from Madison who was at home an hour and a half away.
It simply said: There are people in our front yard. 
I replied and asked what people and what they were doing.
She said: Your friends. They are praying in our front yard. 

As I sat in the waiting room at MDA some of my sweet friends were standing in my front yard praying for me.  How absolutely precious is that?

And so I sat in that waiting room with tears running down my face.  I cried because I am so very blessed to have some of the most amazing friends ever.  Seriously.

Later that day sweet Madison tweeted this:

I couldn't agree more. That is definitely one of my prayers for her. 

I had heard that MDA was an amazing place and it truly is.  They are so totally patient focused and truly think of everything to make your visits as easy as possible.  Each patient has their own social worker, insurance person, and advocate.  There is free wi-fi, signs in each waiting room telling you if each doctor is running on time or behind (and how much), and they have carts they bring in to each waiting room periodically with coffee and tea.  If you have to be in a hospital, this is the hospital to be in. 

We met with Dr. DeMonte and immediately loved him.  He was very knowledgeable, very kind, explained everything very thoroughly.  In between my visit with the surgeon in Temple and this visit and had done quite a bit of research so I didn't get any new information but he answered every single question I had planned to ask every before I asked it.  His stats regarding possible facial paralysis were less than 5% which varied greatly from the surgeon in Temple.  {Loved his numbers much more!}  When I asked how many of these surgeries he had done he said he couldn't count  because there were so many but at that very moment he had six other patients waiting to be seen with the very same tumor.  He truly is an expert.  

By the end of the day I knew without a shadow of a doubt that I wanted Dr. DeMonte to do my surgery there at MDA.  I was certain but so very scared that my insurance would not pay for it- since they had a surgeon who could do it at one of their hospitals.  

And it turned out....I was right to be worried.  

Wait, what?~ Part 4

Wait, what? ~ Part 1
Wait, what? ~ Part 2
Wait, what? ~Part 3

The week between finding out about my tumor and seeing the doctor was a LONG one. I spent the week in a bit of a fog.  I woke up each day {and still do most days} thinking......What the heck? I have a brain tumor. How is that even possible. I spent much of the week doing a little research on this type of tumor and telling friends and family- which I HATED- telling people something that I know will make them sad or worried is so awful.

The things I learned while doing my research scared me but I was ready to see the doctor and find out what we needed to do.

Or so I thought.

Monday I went back to see the audiology doctor who repeated the hearing tests and found the results much the same as the time before.  I then visited with the ENT who showed me the MRI and explained more about the tumor, it's size, and it's location.  It was a blow seeing that tumor on the screen. Knowing you have a tumor in your head and actually seeing that same tumor in your head are two totally different things.  I was stunned and a little sick to my stomach.

And because I am a visual person I took a picture of that MRI with my phone.

The tumor is in the middle of my head- on the right side {although it looks like it's on the left in the pic} completely wrapped around four nerves (2 that deal with balance, 1 that deals with hearing on that side of my head, and 1 that deals with facial muscles on that side of my face). It's rare and the ENT I saw said in over 25 years of practicing he has seen only about 10 cases. He said he was shocked that the MRI found something- that they do tons of them as a precaution- but that they almost never show anything.  The tumor has been growing for years and just now got large enough to start causing symptoms.  It's classified as medium sized- but on the verge of being large.  As you can see by the MRI- there is simply no place for it to go.  It's pressing up against my brain stem so it has to be dealt with- because your brain stem regulates things like breathing and vital functions for keeping you alive.  

We live in a town of about 100,000 and although we have some great doctors and hospitals- my insurance company referred me to a specialist in a larger hospital in a town an hour and a half away.  This hospital is a great one- in fact when I was trying to get pregnant and struggling I saw a fertility specialist in that same hospital and my sweet Madison is the result.  While I was in the ENT's office that hospital called to set up my appointment.  I sat in the parking lot to call them back- praying that they could get me in quickly. My prayers were answered and they told me to arrive the very next morning for an appointment. 

My sweet Daddy went with me (my husband has had two knee replacements in the last year and has used all of his sick and vacation days so I told him not to come and wait until we actually did some sort of treatment) so we got up early and headed out.  

We arrived early and as we sat in the lobby with my daddy drinking his coffee my sweet husband called and prayed me with on the phone.  It was precious and exactly what I needed.  I sat in that lobby tears rolling down my face.  

I think in my mind I was downplaying this tumor.  That I was going to go in and the doctor was going to say that they would just do a little radiation and it would be fine.  That's not what happened.

We met with two doctors- a surgeon and a radiology doctor.  What they did was give me two options for treatment- radiation or surgery.  Both options for treatment have significant risks and concerns- there is no easy choice. They did not tell me what to do- just gave me the information and told me I had to decide.

Surgery is big (12-15 hours) and the goal would be to remove all (or most) of the tumor. The concerns with this are: 1. All hearing in that ear will be sacrificed 2. Chance of facial paralysis/weakness (1-5% severe; 10% mild) 3. Balance issues 4. Major brain surgery- it is complicated and removal of the tumor is difficult 5. Recovery time 4-6 weeks 6. Shave my head.

The other option is radiation which would not shrink the tumor, but hopefully stop it from growing. The concerns with this are: 1. Lose more hearing in that ear (50% chance) 2. Brain swelling 3. One time only. Can't be repeated. Ever 4. Could cause another, malignant tumor to grow (1 in 1,000 or 1/2 of 1%). This tumor would be fatal. 5. Surgery will be much more difficult after radiation because the tumor becomes more sticky. Less chance of removing it all. So if the radiation doesn't work, we are stuck with a super difficult surgery that may or may not be able to remove the tumor. 6. Long term effects of radiation on your head is unknown.

Of course the surgeon said do surgery and radiology doctor said do radiation. We left the appointments with more information than we knew what to do with and absolutely no decision.  It seemed like both options sucked and I kept thinking I wanted another option.

As we drove home I honestly felt overwhelmed.  I didn't feel good about the fact that the doctors, who were supposed to be the experts didn't tell me what course of treatment they felt we should pursue.  How in the world was I, who was terrified and had very little knowledge, supposed to decide? Why didn't they- the experts who knew so much- have a plan and feel confident in that plan? 

I decided that I wanted a second opinion.  We found that MD Anderson in Houston had a department dealing with this specific type of tumor.  Since MD Anderson is a place that deals with tumors- that's all they do- I felt confident if their ability to give me a definite plan of action.  I found online where I could request an appointment and did so- excited when I read that I would hear from them in 24-48 hours. 

Little did I know that getting seen at MDA was about as difficult as getting into Fort Knox.

Wait, what? ~ Part 3

Wait, what? ~ Part 1
Wait, what? ~ Part 2

After making a few phone calls through my tears- to my best friend, my husband, and my daddy, and after sweet Betty prayed for me- we finally pulled ourselves together and headed out of that parking lot.  During the next few hours we had lunch (and I may have had a margarita too), went shopping, and saw a great, funny movie.  Anything to distract ourselves.

I bought these super cute bowls which I LOVE but that I will always think of as my tumor bowls!

I just could not wrap my head around the fact that this routine MRI- done without expecting to find anything, had actually showed something a tumor.  I just kept thinking- this can not be happening.

I decided to wait until I got home to tell Madison- both because I needed some time to get myself together and because I felt I needed to tell her in person.

I didn't (and haven't since) wondered why me but I sure have wondered why NOW?  This is Madison's senior year and I HATE HATE HATE that this year will be marred by this.  It makes my heart hurt.

I stayed awake most of that night- making list after list of questions and things I needed to do- reading some about this type of tumor on the internet {which you should NEVER do} and struggling with the reality of what was happening.

The drive home was difficult- the closer I got, the worse I felt.  Knowing that I was going to have to Maddie, in person and try to hold it together and not start bawling made me physically sick.  I prayed a bunch, cried a bunch, and tried to figure out how to tell her without breaking down into a big sobbing mess.

Thankfully God gave me the strength I needed to hold it together while telling her.  I knew that in the days to come she would see me being upset but initially she needed to see me be strong and confident that it was all going to be okay- even if I was terrified.

After telling her I felt so much better.  It's always the case that the anticipation of something is worse than the actual reality of it.

Or at least that is usually the case.
But when it came to going to see the doctor the following Monday- my anticipation was WAY better than the reality.

WAY better.

Wait, what? ~ Part 2

Wait, what? ~ Part 1

After the MRI I was in a funk.  The MRI made me sick and I spent the next few days super cranky and just not feeling good.  My sweet friend Betty invited me to come visit her for a few days so I left early on Sunday morning to drive to her lake house a few hours away.

{Betty is a precious friend - beautiful inside and out- and one of the most godly and wise women I have ever known.  She's not old enough to be my mama but she definitely is a mama-like influence in my life and I love her so. }

We spent Sunday just visiting and out on the lake- just relaxing and talking- which is exactly what I needed.  We planned to go shopping on Monday morning so after breakfast we both got ready to go.  While in the bathroom I had my phone charging in the bedroom.  When I returned to the bedroom I noticed a missed call and a voice mail message.  It was from my doctor and he said he would call me back.

And then I started to worry.

Because usually, the doctor doesn't call, the nurse does.

And usually, they just leave a message saying everything is fine.

We were driving down the road headed to shop when my phone rang.

Betty was on a business call but when I looked at the screen I knew I had to answer my phone because it was my doctor.

I love that he didn't beat around the bush and got right to it.

He said..... "The MRI showed something.  You have a tumor."

I didn't hear much after that.

I could tell he was focusing on repeating the words "slow growing" and "benign" but other than that his words were just a blur. Through my tears I motioned for Betty to find something to write on and something to write with and I wrote down the name of the tumor before getting off the phone.

While he talked I just kept thinking- a tumor? In my brain? The MRI was just a routine precaution.  It wasn't supposed to find anything.

Betty had gotten off the phone and pulled off the road into a parking lot. So after I hung up the phone we sat there crying in stunned silence.  Betty prayed for me and I thanked God for orchestrating that I was with her when I got the call. God is good and He knew I was going to fall apart- so He put me in a place where it was safe for me to do so.

And fall apart I did.

Wait, what?

I really thought it was no big deal.
Really.

I'm not a girl who goes to the doctor often.
In fact, I usually have to be falling down sick or have my back totally go out in order to end up there. {I usually just figure that whatever is wrong- a cough, a cold, or sore throat- will work it's way through my system so there really is no need.}

So when I had a cold several months ago and my right ear stopped up, I thought nothing of it at first. But when my cold went away- and my ear was still stopped up- I did think it was a little odd.  A friend who is also doctor looked in my ear and suggested that I take some Musinex D to help clear it up.
So I did.

And my ear didn't get better. But it didn't hurt so I just kind of adjusted to it. I used my left ear to talk on the phone and tried to sit on the right side of friends at dinner and the movies. It would occasionally irritate me but it didn't hurt so I figured it was just some fluid in my ear. After some time I tried another round of Musinex D.
No change.

During this time my back went out {oh the joys of getting older} so my ear being stopped up was the least of my concerns. Until one day a few weeks ago when I was in my office and picked up the phone to make a call. For some reason I put the phone to my right ear. When I did I thought...."Oh no! My phone is broken."
because I heard nothing.

I moved the phone to my left ear and heard a loud, clear dial tone. And immediately became concerned. There was a dial tone- I just couldn't hear it at ALL with my right ear. I used that phone immediately to call and make an appointment with my doctor for the next day.

I truly expected to go to the doctor, have him look at my ear, say that there was some fluid trapped in it, and that he would drain it and all would be well.

That's not what happened.

He looked and saw nothing wrong. He had his nurse give me a hearing test- which I failed completely in that ear. Twice. The doctor was concerned  {and he's not usually very excitable} and started throwing around the phrase "permanent hearing loss" which freaked me out a bit. Okay maybe more than a bit.

He started me on a bunch of steroids, called to get me a series of hearing tests, and in to see an ENT specialist as soon as possible- three days later. I left in shock thinking- wait, what?

Three days later I went through a bunch of hearing tests in a sound proof booth with a sweet audiology doctor who told me at the end that I did have permanent hearing loss in my right ear. She explained that it affected my ability to hear voices- not just sounds. {So basically  I hear muffled voices in that ear.  If you turn up the volume in that ear, I don't hear better, I just hear louder muffled voices.} I went straight from her office to the ENT doctor's office where he performed a bunch more tests, looked over the results from the audiology doctor, and confirmed that the loss was permanent.

I sat there stunned thinking...wait, what?
I'm 43, not 83. How can I have permanent hearing loss?

The doctor explained that it was most likely caused a virus and that it just sometimes happens. He said the only hope for restoring hearing {and it was a very small hope} was taking large amounts of oral steroids and steroids shots {in the ear!}. He said due to my age he wanted to do an MRI just to make sure there wasn't something causing the hearing loss other than a virus and scheduled it for the following week.  He said afterwards we could talk about hearing aid options if that was something I wanted to explore. I left his office with a bag full of steroids, an MRI appointment, and a follow up appointment with the ENT for the next week.  I sat in the parking lot in shock that this was permanent and most likely irreversible.

The following Thursday I had the MRI {first one with contrast- so NOT fun} and assumed that I would just talk to the doctor about the results the next week at my scheduled appointment.

I was wrong.