Saturday, July 27, 2013

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.

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