Forest Grove Live

I’m a little late in posting anything new here – so please forgive me.  It has been a very busy month.  May is normally busy for us anyway – what with Spring yard chores, band practices, work, and birthdays.  But this last May – well it was just a tad bit busier than most.

You see, May is Brain Tumor Awareness Month.  Now if you were like me, this is just one of those little factoids you would probably never know, or ever need to know.  I never would have thought about it either – except – on May 17 – I had to become an instant expert on brain tumors.

My wife was diagnosed with one – a Meningioma to be exact.

It started around the beginning of May – right after my wife’s birthday.  She started experiencing severe headaches – located precisely behind her right eye.  She has had headaches off and on for years, along with fatigue, whooshing noises in her ears, chronic sinusitis, you name it.  Our daughter once said that mom was becoming a Hypochondriac. But it wasn’t until we got a new nurse practitioner who suggested a MRI – that we would finally find out what the problem was.

They say “Sticks and stones may break my bones but words will never hurt me”.  Well I beg to differ.     Because one you hear these 5 little words – trust me – you will hurt.  I remember we were sitting in the Docs office, commenting on how the MRI was a experience neither one of us ever wanted to repeat, and then the Doc came in, closed the door, sat down, and said

“You have a Brain Tumor”.

Unless you have personally sat in that chair – you will never, ever, know how scary those 5 little words are.  I would say it was one of the worst days in my life, but over the next few weeks – I would have quite a few of those.  The shock – I think – was the worst part, that and the fear of the unknown.  I mean were talking Brain Tumors here.  Is she going to die?  Can you operate?  Is there medicine?  What?!

The next week was a slew of medical tests, hospital visits, and meetings with a Nerosurgeon.  There’s that shock again.  I mean who would ever think they would need to meet a Neurosurgeon.  It also turned out that my wife was allergic to the pain meds the doc gave her, so she was in pretty bad shape by the time we met the guy.  He instantly gave her a script for a anti-swelling steroid – which eliminated the pain almost immediately.  The plan was to let the steroids do their thing, and by next week they would be ready to operate.

Operate?  On what?!

Because of the size of my wife’s tumor, radiation and radio surgery were not an option.  Her only option was an attempt to remove the tumor surgically.  The operation is called a Craniotomy.  The Doc explained that basically a piece of skull is removed to provide access to the brain.  You would think there would be more shock by now, but by this time a numbness has set in – words like Brain Tumors, bone flaps, and craniotomys just kind of roll right off you.  There’s just no shock factor left.  Although scared beyond our wits – we both accepted that this Doc knew what he was talking about – and this is just standard operating procedure.  I do remember asking him if he had ever done this before.  I think he laughed at me.

It turns out that this guy DID know what he was doing.  And as luck would have it,  the 2nd nerosurgeon  he chose to assist happened to be the Chief of Nerotrauma at Legacy.  The top dog.  Both of these doctors are amazing guys.  And if any of you ever need a recommendation for a neurosurgeon – well let me know.  I cannot say enough good things about either one of these guys.

On May 27 at 830am my wife was wheeled into the operating room for a 14hr surgery.  On May 29 she had to go back in again due to a blood clot that had formed.  Both the tumor and the clot were successfully removed, and within 3 days my wife was wide awake and wondering what had just happened.  I remember I told her,

“Honey, you’ve been asleep for a week!”.

Once she was awake and everything was beginning to look good for a change, she was transferred to a step down room from ICU called TRACU (Trauma Recovery and Acute Care Unit).  She was monitored for 2 days and then shipped over to Legacy Good Samaritan for Rehab.  Legacy Emanuel is one of 2 Trauma Hospitals for the entire state of Oregon, the other being OSHU.  However, as we soon found out, Emanuel is NOT a rehab hospital.  Although she did get some Physical Therapy, they are just not equipped or staffed to do it efficiently , hence the switch to Good Sam.  And although we expected to just “go home” from TRACU – that was never really an option.  And we soon found out why.

On the top floor of Good Sam is The Rehabilitation Institute of Oregon, or RIO.  I will just say that these folks in RIO are nothing short of AMAZING.  What a wonderful experience.  RIO is almost a Country Club compared to Emanuel – but let me warn you – they will WORK you. Between Physical Therapy, Speech Therapy, and Occupational Therapy – my wife had a full schedule for the next 7 days, from 8am in the morning until 5pm every evening.   Their goal is to determine what effects (or deficits) you may have as a result of brain surgery, and to help you overcome them.   Many of the patients in RIO were Stroke or Aneurysm victims.  Some couldn’t walk, some couldn’t talk, some couldn’t feed themselves.  And these amazing nurses and therapists patiently and lovingly help you regain as much normalcy as possible.

We were in RIO for a week.  Soon my wife was walking again, climbing stairs, riding exercise bikes, playing piano, and even scrambling an egg.  Thursday night, we had a graduation dinner at a nearby Chinese Restaurant (they made us walk  and yesterday – exactly 16 days after this whole ordeal started  (and over 900 miles on my car later) – we came home.

She is home today and still healing wonderfully.  We still have a long road ahead of us, but we’ll get through it, the worst is over.

So what is this Meningioma anyway?

Simply put, a Meningioma is an abnormal growth.  Between your brain and skull are several layers of protective membranes called the Meninges.  When these membranes become inflamed and swell, it can lead to infection, which we call Meningitis.  Sometimes abnormal cells start growing on these layers, and can grow for a very long time, forming a tumor.  These are called Meningiomas.

Although not usually considered cancerous, Meningiomas can be malignant.  Generally though, 90% of all Meningiomas are benign.  Another interesting fact is that Meningiomas usually occur in patients between the ages of 40-70, and in women.  Some studies indicate there may be a connection with hormones.  The treatment is usually radiation or surgery.  And the outcome depends mostly on the size of the tumor and it’s location.  As I said, these are very slow growing tumors, and depending on location, can grow to become quite large before any outward signs or symptoms are noticed.

Typical symptoms include headaches, vision changes, personality changes, wooshing noises in one ear, dizziness, and in some cases numbness, tingling, or even paralysis on one side of the body.  The only way to find these things are by CT Scan or an MRI.

Lessons Learned

This has been a life changing experience for both my wife and myself.  You simply cannot undergo brain surgery and not be changed.  I’m still shocked sometimes – I mean I’m sitting here writing about brain surgery. Who would have thought.  But – we take what life gives us and we move on.

One thing that helped me through this was an online support group for Meningioma victims.  There are thousands of people who go through this each and every year, and are alive to tell us about it.  I am now one of them.  It sounds scary, it IS scary, but – we survive.  My wife is a fighter.  And now, she is a brain tumor survivor.  I am very proud of her.

And if there’s one thing that we’ve both learned throughout this whole adventure  - it is simply this:

We all take so much for granted

…walking, eating, talking, even going to the bathroom.  Once you cannot do these things on your own, you learn to appreciate them so so so much more.  Don’t take anything for granted.  Stop, slow down, take life one step at a time, and enjoy everything, no matter how small or simple.  You truly do not realize what you have – until you lose it.

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