Yes--it is me.  Um, how am I doing?  Well, I am here <g>  Is something
going on--well, depends on who does the scan and who interprets it.
What I mean by that is I have brought private scans (including DVD) and
reports to our hmo.  On at least 4 different occasions, I have been
sent to 'specialists' who re-do the scans and discredit the results.
One would like to blame that on 'greed' from private dr's but I know
that is NOT the case.  In fact the private radiologist who has done the
scans is employed by the government and is on salary.  In addition, he
is in processing of developing new radiation techniques to be used for
treatment with what I have.  In fact a close relative has the same type
of bc and has some of the same issues going on.

Why am I still with them?  Part of the reason is where I am
living--CA--and the health insurance nightmares that are going on in
our state.  There are a multitude of reasons for that but a large part
is the large number of uninsured--in fact record has it at least 1/3
and it may be around 50%.  It's hard to know.

In fact I came across one student who told me that he has 4 different
names and 4 different social security cards as does his many siblings.
When I asked how he got that, he told me his dad got them for him at
birth.

As far as what is going on--something seems to be happening in my
spine.  Scans/scan reports are inconsistent but am most worried about
early leptomeningeal mets.  I am also concerned about possibility of
brain mets--but they are not in any location that is causing severre
problems at the moment.  I am having some pain/difficulty with vision.
However, 'new' young neurologist flippantly told me that even if
something were related to bc mets they can blame it on M.S.

What I would like to find--if anyone exists--anywhere in this country
(or elsewhere) who has the expertise to differentiate brain mets from
arthritic activity.

I am feeling reasonably decent for the most part, though.  My
lymphedema arm has worsened despite on-going bandaging and daily
treatments.  I am dealing with a system/providers who are treating me
like I wear a size 8D shoe and giving me a size 5 AAA.  Well, I need
something to wear on my feet outdoors and for that we wear shoes.  It
doesn't matter whether it is the 'right' size or not.  In other words
it doesn't matter whether the treatment they have prescribed is not
working and I am getting worse.   They offer no alternatives.

My onc (the one I switched to)--was seeing both but they decided I
would see this one--is starting to get a bit flakey.  I am still
getting the alternatives but suddenly he changes his minds about scans.
I think what happened there, per an article I read in magazine for
oncologists, is that medicare took them by surprise and changed the way
scans are being approved.  Supposedly they may have to order separate
scans--can no longer to CT of chest, abdomen, and pelvis, but have to
do each area separately.

I am on Arimidex, Betaseron (for MS), Lovastatin, Celebrex (400
mg/twice/day), Doxycycline (50 mg/twice/day), Levothyroid (became
hypothyroid 4 yrs ago), Zometa (every 3 mos)--have an interesting story
about that), and just started taking fish oil.  I think my vision has
improved somewhat since starting that.  I can read for longer periods
and am having less vertical double vision.  (However, I lost my classes
around the same time I started taking fish oil regularly and perhaps,
those were contributing to vision difficulties (blended lenses).
However, I don't think there has been enough time.

I am also doing some other alternatives which may have helped--homemade
kefir (a form of probiotics) which I add turmeric (curcumin) and
cinammon.  Funny thing about this--I received it as a gift the same day
I saw a dr. who recommended that I go vegan.  I was trying to think of
a way to thank the givers of the gift (friends we met up with whom we
hadn't seen in years) but decided just to take it and say thanks.  They
gave it to me in a ceramic urn with all the parapharnalia to use to
take care of it.  That night I decided to try it.  That was in January.
In October I had had a CTC (circulating tumor cell test) of "4."
Anything >2 is significant.  I re-took it, 3 months later--after doing
the kefir daily.  I had had horrific neck pain--could not lay down.
There appeared to be a soft tissue mass in my neck area they wanted to
biopsy.  However, I also had a tumor in my submandibular gland that I
wanted removed, per recommendation of private radiologist.  They
(insurer) wanted to biopsy soft tissue mass.  I had asked if it were
positive would they still allow surgery on gland.  They said no--I
would officially be stage IV and they would no longer have to do
surgery.   I said I wouldn't have that done until gland was removed.  I
got a few 2nd opinions--and chief of head and neck surgery said he'd
remove it.  (private ENT surgeon referred me to UCLA who could either
do the surgery or fine needle aspiration biopsy).  We then saw ENT
chief and decided to go with him.  We had sample sent to Rational
Therapeutics to test for different chemo combinations (paid
out-of-pocket) for that. If they don't have enough tumor in sample sent
will let you know in 3 days.  They said it responded to 7 of the many
different chemo combinations they tested.  However, we got report back
from hmo saying it was benign.  Head and neck (ENT) dr. had not answer.
However, he gave me copy of path. report.  It said they received "a
segment" of the gland.  However, after surgery he showed my husband
entire gland.  When I asked him why report said they received "segment"
of gland when he removed entire gland, he got all tongue-tied and
turned 'red.'  He could not explain.  Meanwhile I re-did CTC a few
weeks later and results were now "0."  Nobody could explain.

Meanwhile soft tissue lesion in neck had disappeared.  The pain from
that had starting going away before the surgery--so was it from the
kefir?  Was the change in CTC results from kefir or from removing gland
(which private radiologist said had tumor in it).  Hmo redid CT scan in
way which could not see tumor.  Oh, and during this time I found a
report from former dr. who used to work at our hmo who wrote stories of
how our hmo manipulated test results, particularly those that were
cancer-related--included substituting biopsies.  In addition they have
also changed reference range for given blood tests--at both ends which
results in delay of treatment and less treatment in given cases and
shorter overall survival time.  What has then happened is that private
insurers then try and make similar change...Wonderful...

The good stuff--I am working full time closer to home--same employer.
I am waiting until last possible moment to change insurers just because
of all the hassles with what is going on.  (Private dr. who has blue
cross ppo for whom treatment was done couldn't get insurance to cover
it, even though the treatment worked).

I  am sitting here now with tight-band like feeling around my chest.
My stomach again is enormous.  My lower legs are very swollen and
distorted.  (Private CT scan revealed 30 to 40 enlarged retroperitoneal
nodes.  HMO ct scan report on on scan done just 1 week earlier stated
there was 'no more retroperitoneal node involvement, even though all
prior scans indicated such).
I am a little more concerned because yesterday I had an episode of
urinary incontinence.  I didn't even have that much inside but was
unable to retain.  It hasn't happened again but will definately watch.
Sorry for the long report.  I haven't been around since aol dropped
newsgroups and couldn't get here.
How are all of you doing?  How is Allan's wife, Deborah?  How/where is
Tim Jackson?  How is Ann?  How is Sue from Texas and anyone else I
missed?