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.