Re: Question - Barb & Ellen (it's a long response)

[Guest guest]

hey darlene - I think you gave voice to ALOT of what we're going

through...

especially what you say about the doctor - my idiot doctor was

simply SHOCKED that I was having such a horrendous reaction to the

dexamethasone...was so incredibly cavalier about it--dismissed it,

really, until i sent him, and the director of the cancer center an

email, detailing my symptoms, and wondering why no one was

appreciating the severity of the situation...(I am so glad I can

sign my letters with " esq " after my name...really perks folks up...)

I hated feeling dismissed; hated even more having the feeling that

if I were a man, i wouldn't be treated so cavalierly; in such a

pataronizing manner--but worst of all was trying to advocate for

myself while feeling like so much cCRAP! whew!!

Oh, and if he suggested a support groups one more time I would have

smacked him (and with the roiling rage inside of me as a result of

the dexamethasone, he's probably lucky i didn't ) I didn't need a

support group! One more place to go...I needed help with my son (for

a month, he would get his own dinner, which consisted of either

buttered popcorn or ice cream with chocolate syrup) - towards the

end of my treatment, I just kept him home from school and stayed

home with him as well...

NOw, a month out of chemo--I don't know...I feel so much better -

really I do--the taxotere simply flattened me--but I feel like a

different woman...and I don't know what to do with myself...because

this is a different " me " ...my husband's death devestated me--but

coming through chemo--I don't know---and the weirdest thing of all

is I still can't believe I had breast cancer...

Well, I'm getting ready for a tree trimming party on saturday (I've

been doing this since Jude's been 4, and he really looks forward to

it - I am too - though it's a much more scaled back affair this

year - geez, last year, I had ~ 25 people (in my 700 sq. ft.

apartment!) this year, just his best friend and his family, plus my

stepdaughter...

then christmas...

Thanks -

peace, marisa

> >

> > Does any one else already finished with treatment have

motivation

> problems? I'm 4 months out of treatment, feeling pretty good

> physically, minor side effects and sore joints, but doing okay.

I do

> get tired but I think some is medication. I'm already on anti-

> depressant and now another med for hot flashes that also treats

> anxiety. My mind seems motivated but I just can't seem to get my

> body to go along. I'd rather take a nap than clean the house. I

own

> my own business which is currently only about part time hours,

> sometimes more, sometimes less just depends on the projects that

I

> am working on at the moment. Christmas can be extremely

stressful,

> but I've got most of my shopping done, most of the wrapping done

and

> most of the planning done. No big family get togethers, so big

> parties or activities. Grandson does have a birthday party

tonight,

> birthday on Saturday (we are his guardians and he lives with us

so

> we do tend to take care of most things with help from his Dad).

BUT,

> even with all this, I just would rather not clean the house (not

> that that was a big thing before bc) or do much of anything

other

> than sit at the computer or sleep. I know that sounds like

> depression, but again, I'm motivated waking up, got all these

things

> I want to get done but once I get started I just poop out. Am I

> expecting too much or just not pushing hard enough?

> >

> > Any opinions, girls?

> >

> > Barb

> > Michigan

> >

> >

[Guest guest]

hey darlene - I think you gave voice to ALOT of what we're going

through...

especially what you say about the doctor - my idiot doctor was

simply SHOCKED that I was having such a horrendous reaction to the

dexamethasone...was so incredibly cavalier about it--dismissed it,

really, until i sent him, and the director of the cancer center an

email, detailing my symptoms, and wondering why no one was

appreciating the severity of the situation...(I am so glad I can

sign my letters with " esq " after my name...really perks folks up...)

I hated feeling dismissed; hated even more having the feeling that

if I were a man, i wouldn't be treated so cavalierly; in such a

pataronizing manner--but worst of all was trying to advocate for

myself while feeling like so much cCRAP! whew!!

Oh, and if he suggested a support groups one more time I would have

smacked him (and with the roiling rage inside of me as a result of

the dexamethasone, he's probably lucky i didn't ) I didn't need a

support group! One more place to go...I needed help with my son (for

a month, he would get his own dinner, which consisted of either

buttered popcorn or ice cream with chocolate syrup) - towards the

end of my treatment, I just kept him home from school and stayed

home with him as well...

NOw, a month out of chemo--I don't know...I feel so much better -

really I do--the taxotere simply flattened me--but I feel like a

different woman...and I don't know what to do with myself...because

this is a different " me " ...my husband's death devestated me--but

coming through chemo--I don't know---and the weirdest thing of all

is I still can't believe I had breast cancer...

Well, I'm getting ready for a tree trimming party on saturday (I've

been doing this since Jude's been 4, and he really looks forward to

it - I am too - though it's a much more scaled back affair this

year - geez, last year, I had ~ 25 people (in my 700 sq. ft.

apartment!) this year, just his best friend and his family, plus my

stepdaughter...

then christmas...

Thanks -

peace, marisa

> >

> > Does any one else already finished with treatment have

motivation

> problems? I'm 4 months out of treatment, feeling pretty good

> physically, minor side effects and sore joints, but doing okay.

I do

> get tired but I think some is medication. I'm already on anti-

> depressant and now another med for hot flashes that also treats

> anxiety. My mind seems motivated but I just can't seem to get my

> body to go along. I'd rather take a nap than clean the house. I

own

> my own business which is currently only about part time hours,

> sometimes more, sometimes less just depends on the projects that

I

> am working on at the moment. Christmas can be extremely

stressful,

> but I've got most of my shopping done, most of the wrapping done

and

> most of the planning done. No big family get togethers, so big

> parties or activities. Grandson does have a birthday party

tonight,

> birthday on Saturday (we are his guardians and he lives with us

so

> we do tend to take care of most things with help from his Dad).

BUT,

> even with all this, I just would rather not clean the house (not

> that that was a big thing before bc) or do much of anything

other

> than sit at the computer or sleep. I know that sounds like

> depression, but again, I'm motivated waking up, got all these

things

> I want to get done but once I get started I just poop out. Am I

> expecting too much or just not pushing hard enough?

> >

> > Any opinions, girls?

> >

> > Barb

> > Michigan

> >

> >

[Guest guest]

Hey Barb,

Your NOT going bonkers.....although it sure does feel like it at times huh?

It seems the little things that we used to be able to handle without thought

seem to be BIG things now, huh? Your right though......laughter and all is the

" light " of things......if we can only laugh at ourselves that IS a big thing.

Damn chemo brain........is right. keep your chin up.......and keep

laughing.......

take care

Darlene

Barb Roy blroy1@...> wrote:

Thanks, Darlene. That meant a lot for me to hear all that. Just glad

I'm not going a little bonkers here. Had a really hard time in the store

yesterday trying to pay for a beanie baby, of all things. My son was there to

keep it light and laughed at me the whole time. Darn chemo brain.

will just take it a day at a time....

Barb

Michigan

Re: Re: Question - Barb & Ellen (it's a long response)

Hi girls<

I too am in the same boat.....and it's been quite some time..let's see....tx.

ended fall of 2004, and all of 2005 was really hard at the motivation

thing........the same thing with me.......the mind wanted to yet the body

wouldn't follow.........and that's exactly how I described it......frustrating

to say the least......as prior to this " journey " I was SO busy and was ALWAYS

doing something.....worked full time, took care of my mom, owned my own business

and did swap meets in between.......can you imagine? Looking back I don't know

how I did it........The motivation thing is STILL a problem.......UGH!!!!!! I

just can't get going. I just don't have the energy or the " drive "

either..........I know after all this that my expectation was way to high, this

I have learned. Pushing myself didn't work either, it just made things

worse........My mind wasn't working right.......I couldn't think, I couldn't

speak right (the wrong words would come out) my thought process was all

messed up......physically I was a mess.....couldn't even dress myself in the

morning......couldn't follow a recipe with out getting frustrated and stopped

cooking......I'll tell you, it WAS bad. I ended up (thankfully) on

antidepressants, speech therapy for the mind and learning how to deal with my

" new " head, pain medication to control the severe pain, counseling (which I am

still in today). Funny thing........as this all began I didn't know I was

depressed until it got so bad that I thought of hurting myself.......that was

scarey.......and the mind thing made me feel like I was going crazy.......I kept

telling my doctor's what was happening and they would look at me like I was the

only patient that this was happening to......they would say things like:

" Oh, this will pass " " gee, don't know why your having so much pain " " do you want

to speak with the social worker? "

Anyway...........I finally found the right " team " for me that helped me get on

" the right track " AMEN for that.

Today.....after all that......I still have motivation problems and mind/head

stuff going on YET with all the DRUGS and therapy I AM in control.........or a

least I'd like to think so .... I get pooped out real easy

still.....try and pace myself....(ya right) :-)

Learning to live with the " new " me has been a difficult road.......I'm learning

to " accept " that life will never be " what it used to " . Maybe with time? Who

know's?

Guess I went off on a tangent with this e-mail........But sure did feel good

getting it off my shoulders........thanks girls for listening........and your

right......we're all in the same boat.....

Take care.....

Darlene

Ellen emc_mom4@...> wrote:

Hi Barb,

I'm just about 4 months out of treatment as well and feel exactly

the same way! I blame some of it on the side effects of Arimidex

(which I think you are on too) but I just don't feel motivated to do

much at all. It's not that I don't " want " to do everything I always

have, it's almost like I just " can't " . Strange, and I do question

whether I am somewhat depressed too - but I don't have anywhere near

the energy or drive that I used to have. My kiddos keep me in check

most of the time, but there are days.............well you know what

I mean.

I had an appointment with my medical oncol. today and we decided

that I'd make the switch from Arimidex to Tamoxifin. I'll be

trading the bone pain for possible blood clots - gee, doesn't that

sound nice - not, but the pain is just too much to deal with so I'm

going to give it a shot. We'll see..........

Hang in there girlfriend, we're all in this boat together!

Love,

Ellen

>

> Does any one else already finished with treatment have motivation

problems? I'm 4 months out of treatment, feeling pretty good

physically, minor side effects and sore joints, but doing okay. I do

get tired but I think some is medication. I'm already on anti-

depressant and now another med for hot flashes that also treats

anxiety. My mind seems motivated but I just can't seem to get my

body to go along. I'd rather take a nap than clean the house. I own

my own business which is currently only about part time hours,

sometimes more, sometimes less just depends on the projects that I

am working on at the moment. Christmas can be extremely stressful,

but I've got most of my shopping done, most of the wrapping done and

most of the planning done. No big family get togethers, so big

parties or activities. Grandson does have a birthday party tonight,

birthday on Saturday (we are his guardians and he lives with us so

we do tend to take care of most things with help from his Dad). BUT,

even with all this, I just would rather not clean the house (not

that that was a big thing before bc) or do much of anything other

than sit at the computer or sleep. I know that sounds like

depression, but again, I'm motivated waking up, got all these things

I want to get done but once I get started I just poop out. Am I

expecting too much or just not pushing hard enough?

>

> Any opinions, girls?

>

> Barb

> Michigan

>

>

[Guest guest]

Wow, Darlene and all, Thanks so much. I am not alone, it appears.

Lots like me and this aspect is not adequately addressed by the

medical community. Comes under the quality of life, as far as I am

concerned!

Ruth

> > >

> > > Does any one else already finished with treatment have

> motivation

> > problems? I'm 4 months out of treatment, feeling pretty good

> > physically, minor side effects and sore joints, but doing okay.

> I do

> > get tired but I think some is medication. I'm already on anti-

> > depressant and now another med for hot flashes that also treats

> > anxiety. My mind seems motivated but I just can't seem to get my

> > body to go along. I'd rather take a nap than clean the house. I

> own

> > my own business which is currently only about part time hours,

> > sometimes more, sometimes less just depends on the projects that

> I

> > am working on at the moment. Christmas can be extremely

> stressful,

> > but I've got most of my shopping done, most of the wrapping done

> and

> > most of the planning done. No big family get togethers, so big

> > parties or activities. Grandson does have a birthday party

> tonight,

> > birthday on Saturday (we are his guardians and he lives with us

> so

> > we do tend to take care of most things with help from his Dad).

> BUT,

> > even with all this, I just would rather not clean the house (not

> > that that was a big thing before bc) or do much of anything

> other

> > than sit at the computer or sleep. I know that sounds like

> > depression, but again, I'm motivated waking up, got all these

> things

> > I want to get done but once I get started I just poop out. Am I

> > expecting too much or just not pushing hard enough?

> > >

> > > Any opinions, girls?

> > >

> > > Barb

> > > Michigan

> > >

> > >

[Guest guest]

hey marisa,

first, thanks for listening........I think a lot of us are in the same boat no

doubt. At first I thought that i was the only one in this boat until I read

stories from you gals. WAS I glad to find out it WAS'NT only me.......for the

longest time I thought it was..how sad is that huh? Funny how we find out

things like this huh? And the only way is to chat with people that either are

or have ben in the same boat. NO WAY could any other person know things like

this.......period.

And the feeling of " being dismissed " is " beyond " anyone's belief isn't it?

You'd think that with all the patients they treat they would have some sort of

" understanding " wouldn't you? I think personally that no one in the medical

field wants to admit what can happen to some people after tx. I know not all

people are affected like this yet I think a lot of us are. We just don't FIT

under the regular " guidlines " . So many people go through treatment and come out

feeling just fine with no side effects.....they ARE the lucky ones.......

It is a new " you " as it is with me...........I still am trying like i said to

" learn to deal with the ne me " ......that is hard...........first of all: how do

you do it? Even with therapy.......unless the person has been through it....how

do they know? I use the therapy to vent.

I'm so sorry to hear that you lost your husband.........I can't even imagine

that.

me too, I can't believe I had breast ca.either...........that is the wierdest

thing for sure.....I HEAR you there.

How do we overcome this?????? They say: " time heals all " ........I guess time

will tell, huh?

It is really good to know that we are not in " this boat " alone isn;t it? At

least it is for me. And being able to chat about it and venting my feelings is

a BIG thing for me. Who know's? Times are tough..........we need to keep our

heads up and do the best we can..........

Enjoy your party..............will be thinking of you..........

take care

Darlene

marisa msteffers@...> wrote:

hey darlene - I think you gave voice to ALOT of what we're going

through...

especially what you say about the doctor - my idiot doctor was

simply SHOCKED that I was having such a horrendous reaction to the

dexamethasone...was so incredibly cavalier about it--dismissed it,

really, until i sent him, and the director of the cancer center an

email, detailing my symptoms, and wondering why no one was

appreciating the severity of the situation...(I am so glad I can

sign my letters with " esq " after my name...really perks folks up...)

I hated feeling dismissed; hated even more having the feeling that

if I were a man, i wouldn't be treated so cavalierly; in such a

pataronizing manner--but worst of all was trying to advocate for

myself while feeling like so much cCRAP! whew!!

Oh, and if he suggested a support groups one more time I would have

smacked him (and with the roiling rage inside of me as a result of

the dexamethasone, he's probably lucky i didn't ) I didn't need a

support group! One more place to go...I needed help with my son (for

a month, he would get his own dinner, which consisted of either

buttered popcorn or ice cream with chocolate syrup) - towards the

end of my treatment, I just kept him home from school and stayed

home with him as well...

NOw, a month out of chemo--I don't know...I feel so much better -

really I do--the taxotere simply flattened me--but I feel like a

different woman...and I don't know what to do with myself...because

this is a different " me " ...my husband's death devestated me--but

coming through chemo--I don't know---and the weirdest thing of all

is I still can't believe I had breast cancer...

Well, I'm getting ready for a tree trimming party on saturday (I've

been doing this since Jude's been 4, and he really looks forward to

it - I am too - though it's a much more scaled back affair this

year - geez, last year, I had ~ 25 people (in my 700 sq. ft.

apartment!) this year, just his best friend and his family, plus my

stepdaughter...

then christmas...

Thanks -

peace, marisa

> >

> > Does any one else already finished with treatment have

motivation

> problems? I'm 4 months out of treatment, feeling pretty good

> physically, minor side effects and sore joints, but doing okay.

I do

> get tired but I think some is medication. I'm already on anti-

> depressant and now another med for hot flashes that also treats

> anxiety. My mind seems motivated but I just can't seem to get my

> body to go along. I'd rather take a nap than clean the house. I

own

> my own business which is currently only about part time hours,

> sometimes more, sometimes less just depends on the projects that

I

> am working on at the moment. Christmas can be extremely

stressful,

> but I've got most of my shopping done, most of the wrapping done

and

> most of the planning done. No big family get togethers, so big

> parties or activities. Grandson does have a birthday party

tonight,

> birthday on Saturday (we are his guardians and he lives with us

so

> we do tend to take care of most things with help from his Dad).

BUT,

> even with all this, I just would rather not clean the house (not

> that that was a big thing before bc) or do much of anything

other

> than sit at the computer or sleep. I know that sounds like

> depression, but again, I'm motivated waking up, got all these

things

> I want to get done but once I get started I just poop out. Am I

> expecting too much or just not pushing hard enough?

> >

> > Any opinions, girls?

> >

> > Barb

> > Michigan

> >

> >

[Guest guest]

Thanks, Darlene. My son usually keeps a humorous spin on things. It helps.

Barb

Re: Re: Question - Barb & Ellen (it's a long

response)

Hi girls<

I too am in the same boat.....and it's been quite some time..let's see....tx.

ended fall of 2004, and all of 2005 was really hard at the motivation

thing........the same thing with me.......the mind wanted to yet the body

wouldn't follow.........and that's exactly how I described it......frustrating

to say the least......as prior to this " journey " I was SO busy and was ALWAYS

doing something.....worked full time, took care of my mom, owned my own business

and did swap meets in between.......can you imagine? Looking back I don't know

how I did it........The motivation thing is STILL a problem.......UGH!!!!!! I

just can't get going. I just don't have the energy or the " drive "

either..........I know after all this that my expectation was way to high, this

I have learned. Pushing myself didn't work either, it just made things

worse........My mind wasn't working right.......I couldn't think, I couldn't

speak right (the wrong words would come out) my thought process was all

messed up......physically I was a mess.....couldn't even dress myself in the

morning......couldn't follow a recipe with out getting frustrated and stopped

cooking......I'll tell you, it WAS bad. I ended up (thankfully) on

antidepressants, speech therapy for the mind and learning how to deal with my

" new " head, pain medication to control the severe pain, counseling (which I am

still in today). Funny thing........as this all began I didn't know I was

depressed until it got so bad that I thought of hurting myself.......that was

scarey.......and the mind thing made me feel like I was going crazy.......I kept

telling my doctor's what was happening and they would look at me like I was the

only patient that this was happening to......they would say things like:

" Oh, this will pass " " gee, don't know why your having so much pain " " do you

want to speak with the social worker? "

Anyway...........I finally found the right " team " for me that helped me get on

" the right track " AMEN for that.

Today.....after all that......I still have motivation problems and mind/head

stuff going on YET with all the DRUGS and therapy I AM in control.........or a

least I'd like to think so .... I get pooped out real easy

still.....try and pace myself....(ya right) :-)

Learning to live with the " new " me has been a difficult road.......I'm

learning to " accept " that life will never be " what it used to " . Maybe with time?

Who know's?

Guess I went off on a tangent with this e-mail........But sure did feel good

getting it off my shoulders........thanks girls for listening........and your

right......we're all in the same boat.....

Take care.....

Darlene

Ellen emc_mom4@...> wrote:

Hi Barb,

I'm just about 4 months out of treatment as well and feel exactly

the same way! I blame some of it on the side effects of Arimidex

(which I think you are on too) but I just don't feel motivated to do

much at all. It's not that I don't " want " to do everything I always

have, it's almost like I just " can't " . Strange, and I do question

whether I am somewhat depressed too - but I don't have anywhere near

the energy or drive that I used to have. My kiddos keep me in check

most of the time, but there are days.............well you know what

I mean.

I had an appointment with my medical oncol. today and we decided

that I'd make the switch from Arimidex to Tamoxifin. I'll be

trading the bone pain for possible blood clots - gee, doesn't that

sound nice - not, but the pain is just too much to deal with so I'm

going to give it a shot. We'll see..........

Hang in there girlfriend, we're all in this boat together!

Love,

Ellen

>

> Does any one else already finished with treatment have motivation

problems? I'm 4 months out of treatment, feeling pretty good

physically, minor side effects and sore joints, but doing okay. I do

get tired but I think some is medication. I'm already on anti-

depressant and now another med for hot flashes that also treats

anxiety. My mind seems motivated but I just can't seem to get my

body to go along. I'd rather take a nap than clean the house. I own

my own business which is currently only about part time hours,

sometimes more, sometimes less just depends on the projects that I

am working on at the moment. Christmas can be extremely stressful,

but I've got most of my shopping done, most of the wrapping done and

most of the planning done. No big family get togethers, so big

parties or activities. Grandson does have a birthday party tonight,

birthday on Saturday (we are his guardians and he lives with us so

we do tend to take care of most things with help from his Dad). BUT,

even with all this, I just would rather not clean the house (not

that that was a big thing before bc) or do much of anything other

than sit at the computer or sleep. I know that sounds like

depression, but again, I'm motivated waking up, got all these things

I want to get done but once I get started I just poop out. Am I

expecting too much or just not pushing hard enough?

>

> Any opinions, girls?

>

> Barb

> Michigan

>

>