Re: OT: What's Going On.

On Aug 19, 5:37 pm, Bill Chandler <dr...@xxxxxxxxxxxxxxxx> wrote:
Warning up front:  this post is utterly off-topic, personal, and
contains various words of questionable moral fiber.  It's also pretty
depressing.  That's how my life works these days.

If you proceed further, well, you've been warned.

I ain't gonna type this twice, that's for damned sure.

I have avoided writing this whole thing out, opting instead for emails
up until now, but this time I'm just going to put it out here.  I
don't know how much more I can take.  

Many of you know what's gone on for us over the last few
years--Carla's parents (grandparents that adopted her as a child)
passed away over the last couple of years, then my mother died last
year.  Bad enough.

Back in November-December of last year, Carla's (my wife) health began
seriously failing.  She has a strong family history of Huntington's
disease; we had hoped when she got past 40 asymptomatic that she
dodged that bullet, but with her failing health, slurred speech, gait
& balance issues and such coming to a head in January (to the point
that she lost her job as a nurse in a psych facility on the lower
level of Hell), we feared the worst.  Went to the doctor, got the
blood test, and at the specialist's suggestion, an MRI.  Well, after
due time in consideration, they looked at the MRI and found a tumor,
about 17mm, in her frontal lobe.  

This bit of joy we were given back around April.  (It all runs
together after a while...)  Unbeknownst to us, even at that point in
time the neurosurgeon (whose primary desire was to get in there and
start cutting, which just ain't gonna happen) was convinced that the
tumor was not causing her symptoms.  We (FINALLY) got the results from
the Huntington's blood test around this time, as well--that came back
negative (MAJOR good news!)...but were left in the dark about
everything else.  Another MRI was done--no tumor growth (that we knew
about).  The surgeon just wants to biopsy, cut, and bombard with
radiation and chemo.  (The tumor apparently isn't causing the
problems...but let's chop her fucking brain up anyway.  Doesn't THAT
just sound lovely.)  (Like I said...ain't gonna happen.)  The tumor is
what they call a grade 1 glioma--slow-growing.

Come June, and another appointment...follow up with the neurologist we
visited before.  At last, someone shares with us the fact that not
only is there a tumor (so far), she is also suffering from "diffuse
cerebellar atrophy".  The neurologist called it cerebellar ataxia.
Says this is what's causing the motor/gait/speech issues, not the
tumor (which Carla named "Fred".  Nothing personal, Mr. Shrimer...).
More blood tests...3 out of 4 came back normal; the 4th, which was
sent to the Mayo Clinic, seemed to vanish into the ether.  

Meanwhile, we've been seeing our family doctor (who is absolutely
wonderful!) more than he's seen her in YEARS.  He's a colonel in the
Army Reserve, so they kept sending him back to Iraq...but he's home
now.  Put her on Antivert and Ibuprofen, which together are actually
keeping the worst of the symptoms and pain under control.  As long as
she takes them.  

August (last Thursday)...yet another appointment.  Another MRI...no
appreciable growth in the tumor or the cerebellar atrophy...that they
mentioned, anyway.  We looked at the MRI, and I got copies (of all of
them) on CD.  Here's the kicker...the results of that last lab test,
which had been sitting in their files since July 18th, came back
totally whacked.  Level of some antibody (which the brain apparently
produces in response to such things as tumors) are through the
roof...154 when a normal reading should be 19 or less.  And the
doctors didn't even tell us this...we had to go and get the damned
report from medical records and read it ourselves.  This is rumored as
a possible trigger for the cerebellar ataxia.  (Google is our friend.
More so than the damned doctors.)

And wait, it gets better!  THERE'S A SECOND TUMOR that the fucking
doctors didn't even MENTION.  It's tiny, and apparently another
low-grade one...but the idea that the damned tumor is having babies
doesn't fill me with buttery goodness.  Once again, Carla found out
about this by reading the MRI report a little more closely.  They
found this one in the April MRI; it hadn't changed since then, the
mention of which is how we noticed it this time.  But she found this
in the report...the damned doctors didn't even mention it.  She told
me about this yesterday, in the middle of hell day at work.  (Monday
on the helpdesk.  Cut longitudinally, not laterally.)

Aren't doctors (SPECIALISTS!) supposed to review these reports and
tell us about them?  Carla being a nurse, she understands this stuff a
lot more than I do...but I am pretty fucking pissed at these doctors
at a major hospital (** Hospital, in Indy) who seem to be sitting on
their thumbs, billing obscene (I mean OBSCENE) amounts to our
insurance (which at least we have...for now...), leaving us with
astronomical copays we can't even begin to afford, and leaving us to
research this *** on Google??!?!?!!!

Suffice it to say, I'm pretty damned depressed right now.  Carla would
probably slap me silly if she knew I was posting this...the last thing
she wants and needs...but I just need to vent.

Hey, at least it ain't (directly) political...

She's dealing with this better than I am.  We're still hoping to be
able to make TX-9 in October...she wants to go horseback riding whilst
I'm sitting around drinking beer and playing guitar.  (Sounds like a
plan.)

Right now, I'm just not dealing very well.  The band's playing out
more over the last several weeks; that helps.  But there just isn't
enough beer to fix this one.  For either of us.  (And she doesn't like
beer, anyway...)

Thanks for allowing me this opportunity to babble...I'll shut up now.
Think we're just going to hide tonight.

Yeah, that's the ticket.  There's still some beer in the fridge.  I'll
get her some Coke on the way home.

Onward...
--------
... "Beautiful story.  Kinda gets you right HERE!"  -- Q

the above e-mail address remains totally fictional.
the real one is bc9424 AT gmailspamTHIS! D0T com (if you remove spamTHIS!)
...please check out my music athttp://www.soundclick.com/billchandlersome time...

Bill Chandler
                        ...bc...

Bill - I'm very familiar with Huntingtons and glad to read the results
were negative. Please know my prayers and thoughts are with Carla and
you until you let us know otherwise. It must feel much better not
having your feelings all bottled up.

Chuck
.