Say What?

16 Nov

For many of my friends, you know. You know what we are going through right now so this won’t come as a surprise. On Monday, October 22 my new husband Britton was diagnosed with a benign brain tumor.

It all started about a year and a half ago.  My now husband’s hearing was starting to go just in his right ear.  At first, he thought it was his headphones.  A defect.  He soon realized it wasn’t.  Over the last year or so I have given him a hard time about his hearing.  Told him he needed to get it checked out to get him a hearing aid.  I joked about him having too much wax in there! On October 17, the week after our honeymoon, I pressed him to make an appointment with his ENT to finally get this thing fixed…

While he was at the doctor’s office I got a cryptic text.  It said “I’ve got some serious issues ;(. I have to get an MRI.”  Obviously I called him immediately but he was busy having audiology tests done.  He discovered in that appointment that there was something wrong with his nerves that communicate between his right ear and his brain and he was having the most trouble discerning speech.  It wasn’t his hearing.  Only about an 18% loss of actual hearing in that ear.  Nothing significant.  It’s the speech thing that is troublesome.

He had an MRI on the 19th and we got the results over the phone the following Monday.  As Britton was boarding a plane to Los Angeles he got the call from his ENT doctor.  They told him he has what they think is an Epidermoid Brain Tumor.  Once on the plane he proceeded to call me and tell me the news.  Through the noise of the plane I tried to understand what was going on but it was hard.  All I can remember from the conversation was that my husband had a tumor.  He did explain that it was benign and growing slowly but what does that matter right?  It’s still a tumor!

The following few days were difficult for both of us.  He was out in California trying to work while I was at home trying not to look on the internet at all the things I could find on Epidermoid Brain Tumors.  I had the privilege of calling his doctor in Sioux City to get more information but it didn’t help much because we really needed to be talking to a neurosurgeon or neurologist.  It became a waiting game.  Britton came home a day early after having a meltdown in California and we both took that Friday off from work just to be together.  My parents were in town because it was also the weekend of our Sioux City wedding reception so we had to put on our smiles and get through the weekend.  We weren’t ready to tell all his friends yet since we didn’t even know ourselves what we were up against.

Britton travels for his job 5 out of every 6 weeks.  The thought of him being gone during this had me a little freaked out.  However, we soon discovered just how blessed we really are.  After Britton told his office about what was going on they agreed that he needed to be home.  He took the next two weeks off of travel so that we could figure out our next steps.  We spent Halloween week reaching out to recommended doctors and hospitals to make appointments with neurosurgeons and ENTs that specialized in skull based tumors (that’s what an epidermoid is).  We were also lucky to get in to a specialist in Omaha on November 5 which was the soonest appointment we could get anywhere.

November 5th came and Britton and I headed down to Omaha.  What was supposed to be a 1 hour appointment with a neurosurgeon ended up being a day of going in and out of doctors offices to have all sorts of specialists look at our scans.  After the neurosurgeon we headed straight to his partner, an ENT, that works on these tumors with the neurosurgeon.  After that we had a quick refuel at Starbucks and headed out to a neuro ophthalmologist.  We needed to determine if some of the problems with his eyes could be due to the tumor on his brain.  I will post more on the details of that later.

Finally, by about 8 pm we were heading back home absolutely exhausted.  In the following days we were able to schedule more appointments at the Mayo clinic and headed up there this week to speak with another doctor and get a second opinion.  Over the past month we have had good days and bad and worked hard to keep everything together.  I never realized how strong I was until our first appointment in Omaha.  It amazes me.

I want to thank all of our friends and family that have been there to support us through this difficult time and the difficult times that are lying ahead.  As we have made our phone calls and pulled together our friends we can feel all the love that surrounds us and I am so thankful for that.  Our journey is definitely not over but I know our road will be filled with those people around us to support us.  Thank you.


3 Responses to “Say What?”

  1. Joni November 16, 2012 at 9:01 pm #

    great job, sweetie…..we’re all here for you both!

  2. Sydney Liebman November 17, 2012 at 6:46 pm #

    Hi honey. Your mom sent me the link to your blog. I appreciate the update. I’m thinking about starting a blog, as well — thinking the “pretend” talking and putting thoughts to “paper” might help me, as well. Happy Thanksgiving — I love you.

  3. Kendra G. November 19, 2012 at 2:03 am #

    Praying praying praying! Lots of love from Florida. xoxo

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