So many questions

I was Dx with IBC on Sept 2005.....I have been a member of
this support  
group since then, and have received worlds of information,
but, have only  written 
one time.....I guess I am kinda timid about this disease and
pretty  ignorant 
so I would rather listen, than talk, so to speak...
After all this time, I guess I am now ready to ask some
things and would  
appreciate your input!
 
DX Sept 2005   3 rounds of chemo, 11/30 radical mast on
left(with  clear 
margins), simple mast on right (my choice on right), now
have taken last  of 6 
scheduled chemos, and also, started radiation in Jan 2006,
about 20  treatments 
left....dont know what is scheduled next, have Onc appt on
Wed
 
My biggest concern is this....and I dont mean to sound
"down" or whatever,  
but I cant help but think that with this disease that the
inevitable is "death" 
 within a couple of years...no matter all the suffering of
the surgeries, the 
 chemos, the burnt skin, etc.....Does anyone ever really
beat this kind of  
cancer....I mean do they ever really finish all the
suffering and then are  
cancer free and live happily ever after so to
speak....Please dont anyone of you  
think I am being "negative" or
"Unappreciative" of life...I am not....I am 
just  having trouble staying positive and focused on getting
better.....Also, 
after  mast I got staff infection, back in hospital for 2
weeks, now with last 
chemo my  white count bottomed out , got pneumonia, hospital
another week, just 
got home  yesterday, so guess I am still a little down.... 
just let me know 
if any  of you have these feelings too...or am I crazy....
 
Also, all my "insides" feel sore......is that
from chemo and all the  
medicines I take....Docs examine me and feel nothing
abnormal, but I feel  it....in 
upper abdomen area..just sore
 
Next thing, I feel so "funny looking".....and
uncomfortable with my  
body.....no hair...well not that biggie really, the no boob
thing makes none of  my 
clothes look good....of course I have a prothesis but I cant
wear it now  cause 
of skin burns.....
 
How long is it before you start feeling good......I mean
when you enjoy  
doing things again....I mean, I try but it just wears me out
and its just not as  
fun like it use to be.....I hate shopping now...especially
for clothes...I buy 
 underwear, gowns, shoes..lol   or things for the house!  
 
Am I normal......or what..!  I am so thankful for my life
now   ....Cancer 
has really changed me in so many positive ways...I see
things  differently 
now..my sons and my hubby have never been more important to
me.....I  get excited 
over the littlest things now.....Like I had  a pansy
blooming  today and almost 
went crazy...lol  People always say I look great, and  if
they didn't know 
any better they would never know I have cancer.....but when 
will I feel that 
way??? I guess that's silly though....
Hope I havent bored you all and I am NOT on a pity
pot......I just needed  to 
share with ones that may understand my feelings.....dont
really have anyone  
here...I have lots of family and friends support but not
with women that are  
going thru what I am....Thanks for any help...and If I just
need a swift kick 
in  the "bottom"..lol  just tell
me.......that's ok too....God bless all of 
you  and have a wonderful Weekend
 
Deboran Clevenger in Tx

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Deb,

Mentally and emotionally, I would say that you are about
where I was a year
ago. You are perfectly normal for feeling that way. You have
just been
through hell. I laugh when I think about the surgeon telling
me what my
treatment would be like (six months of chemo, a mastectomy,
and radiation)
and then saying, "Try and avoid stress." Like,
"We're gonna poison you, cut
off one of your favorite body parts, burn you, and oh, by
the way, try and
avoid stress." This is probably the scariest thing
you've ever encountered.
I know it was for me.

There are women who post to this list who have survived IBC
for as much as
twenty years, so no, death in two to five years is not
inevitable. There are
newer and better treatments coming out all the time, and I
thank God we live
at the time that we do, because when those women got IBC, it
was like a
death sentence. Yet they survived anyway. There are a lot of
women who
don't, but the numbers who do increase every year.

Now, a year after all that initial treatment, I feel a lot
more at ease with
my body. I'm going through a recurrence (skin mets) right
now, and more
chemo, but I'm also planning my wedding April 9 and getting
ready to move to
my fiance's town and start a new life. I'm excited. I know
that once this
round of chemo is over, I'll start feeling healthy again
like I did before
the recurrence, and I'll make new friends and do new
things. I may have
other bouts with IBC in the future, but in between there are
times when we
can feel good and enjoy life. And for a lot of people, that
NED (no evidence
of disease) status lasts for years and years.

Oncologists don't like to use the word "cured".
In fact, mine never does,
because to him, that means the patient will walk away and
never be monitored
for a recurrence. They prefer to say "no evidence of
disease", because then
you will know that for now you're ok, but you should still
have periodic
scans to make sure they catch anything before it gets out of
hand. So if
your doctor tells you that you will never be cured, that
doesn't mean that
it's impossible to remain NED for the rest of your life and
die of old age.
My great-grandmother survived breast cancer twice and died
of a stroke at
92.

I can't predict your future anymore than I can my own, but
I hope this makes
you feel a little better.

Susan

 
-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of DEBCLEVENGERaol.com
Sent: Friday, February 24, 2006 10:36 PM
To: ibcibcsupport.org
Subject: [ibc] So many questions

I was Dx with IBC on Sept 2005.....I have been a member of
this support  
group since then, and have received worlds of information,
but, have only
written 
one time.....I guess I am kinda timid about this disease and
pretty
ignorant 
so I would rather listen, than talk, so to speak...
After all this time, I guess I am now ready to ask some
things and would  
appreciate your input!
 
DX Sept 2005   3 rounds of chemo, 11/30 radical mast on
left(with  clear 
margins), simple mast on right (my choice on right), now
have taken last  of
6 
scheduled chemos, and also, started radiation in Jan 2006,
about 20
treatments 
left....dont know what is scheduled next, have Onc appt on
Wed
 
My biggest concern is this....and I dont mean to sound
"down" or whatever,  
but I cant help but think that with this disease that the
inevitable is
"death" 
 within a couple of years...no matter all the suffering of
the surgeries,
the 
 chemos, the burnt skin, etc.....Does anyone ever really
beat this kind of  
cancer....I mean do they ever really finish all the
suffering and then are  
cancer free and live happily ever after so to
speak....Please dont anyone of
you  
think I am being "negative" or
"Unappreciative" of life...I am not....I am 
just  having trouble staying positive and focused on getting
better.....Also, 
after  mast I got staff infection, back in hospital for 2
weeks, now with
last 
chemo my  white count bottomed out , got pneumonia, hospital
another week,
just 
got home  yesterday, so guess I am still a little down.... 
just let me know

if any  of you have these feelings too...or am I crazy....
 
Also, all my "insides" feel sore......is that
from chemo and all the  
medicines I take....Docs examine me and feel nothing
abnormal, but I feel
it....in 
upper abdomen area..just sore
 
Next thing, I feel so "funny looking".....and
uncomfortable with my  
body.....no hair...well not that biggie really, the no boob
thing makes none
of  my 
clothes look good....of course I have a prothesis but I cant
wear it now
cause 
of skin burns.....
 
How long is it before you start feeling good......I mean
when you enjoy  
doing things again....I mean, I try but it just wears me out
and its just
not as  
fun like it use to be.....I hate shopping now...especially
for clothes...I
buy 
 underwear, gowns, shoes..lol   or things for the house!  
 
Am I normal......or what..!  I am so thankful for my life
now   ....Cancer 
has really changed me in so many positive ways...I see
things  differently 
now..my sons and my hubby have never been more important to
me.....I  get
excited 
over the littlest things now.....Like I had  a pansy
blooming  today and
almost 
went crazy...lol  People always say I look great, and  if
they didn't know 
any better they would never know I have cancer.....but when 
will I feel
that 
way??? I guess that's silly though....
Hope I havent bored you all and I am NOT on a pity
pot......I just needed
to 
share with ones that may understand my feelings.....dont
really have anyone

here...I have lots of family and friends support but not
with women that are

going thru what I am....Thanks for any help...and If I just
need a swift
kick 
in  the "bottom"..lol  just tell
me.......that's ok too....God bless all of 
you  and have a wonderful Weekend
 
Deboran Clevenger in Tx

[list software deleted text/html attachment]

-- 
** List address: ibcibcsupport.org
** Information - subscribe, unsubscribe, archives, etc.:
**  http://www.ibcsupport
.org/list/
** Donations: http://www.i
bcsupport.org/donations.html


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bcsupport.org/donations.html

Susan,
 
I loved your response to  Deboran Clevenger in TX.  It is
difficult to remain upbeat when you are faced with the
challenges of fighting and defeating IBC.  Your message was
more than encouraging.  Thanks for sharing with the group.
 
CAROLYN WARREN
also DX in Sept 2005
 
 
-----Original Message-----
From: Susan Svencicki <susansvbellsouth.net>
To: DEBCLEVENGERaol.com; ibcibcsupport.org
Sent: Sat, 25 Feb 2006 00:03:17 -0500
Subject: RE: [ibc] So many questions


Deb,

Mentally and emotionally, I would say that you are about
where I was a year
ago. You are perfectly normal for feeling that way. You have
just been
through hell. I laugh when I think about the surgeon telling
me what my
treatment would be like (six months of chemo, a mastectomy,
and radiation)
and then saying, "Try and avoid stress." Like,
"We're gonna poison you, cut
off one of your favorite body parts, burn you, and oh, by
the way, try and
avoid stress." This is probably the scariest thing
you've ever encountered.
I know it was for me.

There are women who post to this list who have survived IBC
for as much as
twenty years, so no, death in two to five years is not
inevitable. There are
newer and better treatments coming out all the time, and I
thank God we live
at the time that we do, because when those women got IBC, it
was like a
death sentence. Yet they survived anyway. There are a lot of
women who
don't, but the numbers who do increase every year.

Now, a year after all that initial treatment, I feel a lot
more at ease with
my body. I'm going through a recurrence (skin mets) right
now, and more
chemo, but I'm also planning my wedding April 9 and getting
ready to move to
my fiance's town and start a new life. I'm excited. I know
that once this
round of chemo is over, I'll start feeling healthy again
like I did before
the recurrence, and I'll make new friends and do new
things. I may have
other bouts with IBC in the future, but in between there are
times when we
can feel good and enjoy life. And for a lot of people, that
NED (no evidence
of disease) status lasts for years and years.

Oncologists don't like to use the word "cured".
In fact, mine never does,
because to him, that means the patient will walk away and
never be monitored
for a recurrence. They prefer to say "no evidence of
disease", because then
you will know that for now you're ok, but you should still
have periodic
scans to make sure they catch anything before it gets out of
hand. So if
your doctor tells you that you will never be cured, that
doesn't mean that
it's impossible to remain NED for the rest of your life and
die of old age.
My great-grandmother survived breast cancer twice and died
of a stroke at
92.

I can't predict your future anymore than I can my own, but
I hope this makes
you feel a little better.

Susan

 
-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of DEBCLEVENGERaol.com
Sent: Friday, February 24, 2006 10:36 PM
To: ibcibcsupport.org
Subject: [ibc] So many questions

I was Dx with IBC on Sept 2005.....I have been a member of
this support  
group since then, and have received worlds of information,
but, have only
written 
one time.....I guess I am kinda timid about this disease and
pretty
ignorant 
so I would rather listen, than talk, so to speak...
After all this time, I guess I am now ready to ask some
things and would  
appreciate your input!
 
DX Sept 2005   3 rounds of chemo, 11/30 radical mast on
left(with  clear 
margins), simple mast on right (my choice on right), now
have taken last  of
6 
scheduled chemos, and also, started radiation in Jan 2006,
about 20
treatments 
left....dont know what is scheduled next, have Onc appt on
Wed
 
My biggest concern is this....and I dont mean to sound
"down" or whatever,  
but I cant help but think that with this disease that the
inevitable is
"death" 
 within a couple of years...no matter all the suffering of
the surgeries,
the 
 chemos, the burnt skin, etc.....Does anyone ever really
beat this kind of  
cancer....I mean do they ever really finish all the
suffering and then are  
cancer free and live happily ever after so to
speak....Please dont anyone of
you  
think I am being "negative" or
"Unappreciative" of life...I am not....I am 
just  having trouble staying positive and focused on getting
better.....Also, 
after  mast I got staff infection, back in hospital for 2
weeks, now with
last 
chemo my  white count bottomed out , got pneumonia, hospital
another week,
just 
got home  yesterday, so guess I am still a little down.... 
just let me know

if any  of you have these feelings too...or am I crazy....
 
Also, all my "insides" feel sore......is that
from chemo and all the  
medicines I take....Docs examine me and feel nothing
abnormal, but I feel
it....in 
upper abdomen area..just sore
 
Next thing, I feel so "funny looking".....and
uncomfortable with my  
body.....no hair...well not that biggie really, the no boob
thing makes none
of  my 
clothes look good....of course I have a prothesis but I cant
wear it now
cause 
of skin burns.....
 
How long is it before you start feeling good......I mean
when you enjoy  
doing things again....I mean, I try but it just wears me out
and its just
not as  
fun like it use to be.....I hate shopping now...especially
for clothes...I
buy 
 underwear, gowns, shoes..lol   or things for the house!  
 
Am I normal......or what..!  I am so thankful for my life
now   ....Cancer 
has really changed me in so many positive ways...I see
things  differently 
now..my sons and my hubby have never been more important to
me.....I  get
excited 
over the littlest things now.....Like I had  a pansy
blooming  today and
almost 
went crazy...lol  People always say I look great, and  if
they didn't know 
any better they would never know I have cancer.....but when 
will I feel
that 
way??? I guess that's silly though....
Hope I havent bored you all and I am NOT on a pity
pot......I just needed
to 
share with ones that may understand my feelings.....dont
really have anyone

here...I have lots of family and friends support but not
with women that are

going thru what I am....Thanks for any help...and If I just
need a swift
kick 
in  the "bottom"..lol  just tell
me.......that's ok too....God bless all of 
you  and have a wonderful Weekend
 
Deboran Clevenger i
[list software n Tx
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.org/list/
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bcsupport.org/donations.html


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