Now What? A Follow Up Perspective

Hello everyone,

It’s been months since I’ve posted to this blog and I think it’s way overdue.  I apologize for the delay but I did have reasons.  I’m sure that some of you won’t agree with them-just know that I don’t agee with them either.  We’re doing the best we can.

The truth is that her new symptoms have me worried sick.  There were several sleepless nights that I had attributed to work or diet or whatever but that’s been a lie.  In Satomi’s post yesterday she revealed her new hearing problem and worsening dizziness.  The post is an accurate reflection of how Satomi is dealing with it-She remains optimistic and hoping for the best and she plays down just how bad things are. 

Please know that I’m really trying to gauge my words.  She still looks drastically improved and anyone that saw her would think I’m full of crap.  That’s just not my reality.

This problem has been going on for weeks now.  Early on we thought she had some sort of upper respiratory infection.  Kandice, Jillian, and I all had signs of it so at the time it wasn’t a serious concern.   Satomi then had her reconstruction surgery.  None of the Doctors seemed concerned because she had no fever.  The recovery itself actually went very well but her hearing and dizziness just stayed bad and arguably, got worse. 

Her dizziness is almost debilitating.  Some of you may remember her first bout of dizziness following her Cyberknife procedure over a year ago.  It was so bad she was forced to take Decadron.  She described the severity to me as almost as bad as that.  It’s so bad she’s stopped walking Kandice to school.

She went to see her Neurologist and Otolaryngologist (Ear, Nose, & Throat Doctor) at the House Ear Clinic and he “saw no signs of drainage” (a sign of an infection) and had no obvious explanation for her new deafness.  Both agreed that the MRI is the next step.

If I had to guess, her hearing is at less than 25% of normal and it effects her quality of life.  She can’t hear the kids call her.  She has to use the Closed Caption service on the TV.  I can’t call her on the phone to talk about whatever unless I want to yell into the phone.  Most of the time I end up hanging up on her because she can’t even hear me say goodbye.  I can’t get her attention when she’s 6 feet away or sitting next to me in the car.  And there are so many things left to talk about.

We expect a call about the MRI results any time now.

11/19/10 Update-No call yet.  I called the Neurologist office and the Oncologist but neither has seen the report of the films yet.  They are calling the lab to follow up.  Since the MRI was on Wednesday afternoon, they expect not to have word until Monday.  The Oncologist assures me that the few extra days won’t impact a treatment plan assuming for a moment that one will be needed.  Maybe it’s better not to know.  That’s crap, this weekend is going to suck.