<< Kaye
how are things going?
Alex

Reasonably well--I think.  Thanks for asking, Alex.  However, things are also a
bit complicated--almost too complicated to explain.
There have been things going on with my spine--but inconclusive, but reports
are contradictory and inconsistent.  One of the spine dr.'s I saw (and only saw
a 2nd one at the urging of the first) told me that I had bone marrow mets to
all the vertabrae in my thoracic spine.  A second radiologist didn't think that
I had that at all and can't recall whom but another dr.--my regular or former
regular oncologist told me that the appearance of my thoracic spine may be
affected by the medication I take for M.S. (betaseron--interferon beta).  I am
most concerned, though, about my cervical spine.  I went off the Celebrex and
Doxycycline for a short break this summer while taking Keflex (for redness in
my lymphedema arm) which I was sure I did not need.  However, I thought I would
take a medication break to see if any of the symptoms I'd been having (such as
a bilateral hissing sound in both ears) may have been related to the
Doxycycline or Celebrex.  I also went off them because sometimes a medication
break can help the medications work better when restarted.  Anyway, while off
them I had such severe neck pain I couldn't sleep.  The pain was when I lay
down at night primarily.   I am sitting here having a bit of a tough time
reading--have been having minimal vertical double vision--hope it isn't b.c.
related.
My neck began to hurt somewhat in July, primarily when seated. It sort of feels
like it is crunching into my spine.  It isn't that painful--more like a
pressure.    My range of motion is still good.  It started hurting worse last
night.  I think that may have been related to the awkward position I was in
while having a PET scan yesterday.  This morning it hurt as well and the
dizziness returned.  It is a different type of dizziness--this one I get an
image of something going around horizontally in a somewhat slow, chunking
manner.  I wonder if that means the benign paroxysmal positional vertigo is
back?  I forgot to mention that the MRI showed some type of lesion in the C2
area.  One dr. thinks it's possibly MS-related and another (spine dr.) said I
should ask my onc about radiation and/or chemo.  I am totally confused.   Then
there C6-C7 area is showing degeneration.  I am most concerned because there
was change there on the MRI between July and September.  I have no idea what
that means.
Then there is the lumbar spine.  That's a whole 'nother story.  I am not sure
what if anything is going on there.  However, the last MRI compared results
with MRI a full year before and said area (reported to be cyst or mass) was
stable.  However, MRI in between had said it was smaller and no longer had
regular borders--and now appeared less likely to be a cyst.  We saw spine dr.
who put up films taken a year apart and told us it was stable.  We asked about
intervening MRI.  He said he didn't have the films.   (We are quite sure he
did).  He went on to tell us radiologists are hunan and make mistakes.  He also
said they do not have to compare all films.  Not comparing two most recent when
there was a change, however, is not following precedent.  We said we'd be more
comfortable if they were compared.  He refused and suggested we see another dr.
It was too weird.  He also said that I/we were concentrating too much on the
spine and that "I" might miss something else.  Huh???  "I" might miss
something???  That was what led me to be more concerned about the cervical
spine.
I have been keeping up on the research on lobular and have learned that lobular
mets can have a spotted appearance in areas affected (i.e. read description of
lobular brain mets appearing as 'spotted throughout' the given area in the
brain).  Meanwhile I am back at work (was off for two months during the
summer--am in education).  I have been training for the Susan G. Komen 3 Day 60
mile walk which will be the 2nd weekend in October.  This year has been a bit
harder physically.  I have been experiencing pain in the upper (back?) part of
my thigh and part of the hip (sacroiliac?) area.
Last weekend one of my oldest daughter's roommates moved in with us for a
month.  She also is in med school in Boston but is doing a rotation out here in
So.Cal at a family practice clinic.
Oh, and I got a call earlier this week asking if I would be available for an
interview for local paper for the Susan G. Komen 3Day Breast Cancer walk.  This
will be my 2nd year at doing it, and my husband will be on the medical crew.  I
know--I am a glutton for punishment.
Sorry for the length of this...and that is only some.  I forgot to mention
about the liver...won't go into too much detail but am concerned because I
again look 10 mos. pregnant--same way I was at time of dx.  However, just after
dx and before surgery I lost 17.5 lbs after changing my diet--stopped milk
products, sugar, and most processed foods and started some exercise.  Well, my
system must have slowed down alot because since December  I've gained over 10
lbs (and am not eating enough to have done that).  And I forgot to mention my
arm--the one with lymphedema--am wrapping that daily.  Sleeve doesn
help--swelling got worse anyway.  I am concerned about chest wall recurrence on
both malignant and benign sides.   The lymph node in my arm--non malignant
side--was reported to be swollen by 3 different dr.'s.  Nothing has been done.
Then when I  saw my onc last Spring he mumbled something about chest wall
recurrence.  I talked briefly with my surgeon soon after and she mumbled
something to the effect that if it were a chest wall recurrence they couldn't
operate because I had already had radiation.
We tried to get a 2nd opinion whether anything I had going on could be possibly
treated by cyberknife.  The appt. was  not successful.  Basically we were told
that we needed to find an oncologist we could trust???  How can I trust any dr.
when we can't even get an honest 2nd opinion...sigh...
Other than that (and am sure I left out more), I am doing okay.  
How is everything going for you?  Take care....