Re: Amusement Parks, Sex etc

June 3, 2008

Donna,

Don't mind that nosey business I'm a bit that way myself.lol.Sorry

you seem to be feeling so tired..I feel I am handling this Dx fairly

well so far.That may change after I start treatment.I am scared that

I will have all the terrible side effects.I am really concerned about

weight gain and vomiting from nausea.I'm assuming your not happy

about the weight gain(not sure if you needed to gain do to illness).I

suffer severe depression when I gain weight and my pain level

increases 10 fold.

I am 40.I have one 18 year old son who lives at home.I have a b/f

but he no longer lives with me.He lives about 85 miles away now so I

don't see him as much as when he lived here.My mom lives about 1/2

mile from me as well.They are all very supportive but like me don't

really understand much about CML.My son asked me today if I was going

to be real sick/looking and unable to do things for myself.I don't

really know what I will experience after my treatment begins..I hope

it's not as bad as the Gleevec website says it will be..ugh..I dread

this but know I must do it..Can't put my head in the sand on this

one..I've never been much of a procrastonator anyways..Don't need to

start now.

Hope you start getting back some energy soon.

Thanks

SharonS

In , donnaberry99 <no_reply@...> wrote:

>

> Hey All

> Did I read that when you go to an amusement park you can tell them

> you have CML and they will let you go Fastrak etc??? I could have

> made this up (chemo brain)

> That darn tiredness it is the one thing that brings me to tears I

> feel like I am letting the side down when I have to admit I am

tired

> and need a nap. My house has suffered......it looks like it needs

a

> spring clean all the time and is untidy which is totally unlike it

> was before dx.

> I got on the scales for the first time in 2 weeks and I had gained

> another 7lbs, that is a total of 30+ since July 07 aaaaaaaaaahhh!!

> Sex.....it does seem to be more of any effort these days but well

> worth the bother (I atribute this

> Welcome to Sharon, you seem to be taking this CML thing very well.

> What part of the US do you live? Do you have any children? A

> supportive partner? How old are you? Just call me nosey!!!!

> Donna x

>

> >

> > Tammy, Amusement parks are not out of the question BUT you have

to

> build into the cost for your day a rental of an ECV, it's one of

> those chairs that will allow you to drive around the park. They're

> usually about $40/day. I acutally bought one to have for myself

and

> now whenever we are going on a trip or to a park I have my own to

> take with me. It allows you to exert your energy on things that

> matter and not on walking all around the park. If you don't have

one

> you won't last long at a park. Good luck!

> > :}

> > J.

> >

> > [ ] New fatigue question

> >

> > Is this the new normal? It sucks!!! Since DX in Aug.... I was

> recovering

> > from surgery. Then I was into marital problems, then holidays.

So,

> yeah, I

> > was tired - but there was a reason. Jan, Feb and March didn't

bring

> much

> > activity. April and May and now that it is starting to warm up...

I

> can't

> > " DO " things that require more than a few hours. I went to help at

my

> > daughter's school on Fri. from 11 - 2. By 1:30 I was wondering

when

> it would

> > be over. I got home at 2:30 and slept until 6:00! Today we went

and

> walked

> > around downtown from 1-3. And I came home and slept for 2 hours.

> Does this

> > mean I'm a wimp? Is this normal? Do I actually have to PLAN to be

> totally

> > exhausted after 2-3 hours of activities? Wouldn't this mean an

> amusement

> > park is out of the question? About a month ago, we did go to a

> science

> > museaum, where we watched a movie, walked around and then watched

a

> > different movie. Then went to walk around a mall. I was tired,

but

> not

> > totally exhausted, though I did sleep in the car on the way home.

> But the

> > past couple weeks - tired!

> >

> > Is there something else I should be doing? I see the onc in about

2

> weeks,

> > I'll mention it to her. But it just doesn't seem like a 36 yo

> should be this

> > tired. Or is this one of those side effects that just showed up

and

> will

> > hopefully disappear again.

> >

> > Sorry I'm so negative. On the way home today when had to change

> plans so I

> > could lay down, I heard the frustrated " OK " sighs of the 13 and 8

> yos. Along

> > with my own frustration, theirs made it worse.

> >

> > Tammy

> >

> > <http://geo.. com/serv? s=97359714/ grpId=14762801/

> grpspId=17050616 28/msgI

> > d=10140/stime= 1212338651/ nc1=5191945/ nc2=5191951/ nc3=4507179>

> >

June 3, 2008

Hi Sharon S,

Don't worry too much about the Gleevec side effects. I love the help

of this web site and these awesome people have helped me through some

rough times but I have to admit if someone is sick I actually skip

through their posting or I will for sure develop whatever they

have!!!! Thank God other CML warriors post them back on these matters

and commiserate with them.

I know others have said this but you are not alone now with this, most

of what you will feel we all have felt at one time or another and it

has subsided.

The weight gain is a huge deal for me I have always been mega weight

conscious and people always said " you have a great figure why do you

worry " and I would know I had a great figure because I did worry!!!!

I have gained 30+lbs but to be really really honest Sharon I haven't

tried as hard as I did before dx (diagnosis), I certainly don't

exercise anymore (used to run 5ks) as I am too tired and I eat candy

bars which I hadn't done for years!!!! So when I think about it and

be honest with myself I have kind of been hiding behind the excuse I

have CML so I should be able to eat what I want but I am going to be

better!!! Hey I swam 10 laps today!!! So anyway what I am trying to

say is I think you are going to be fine and not gain weight if you

practice what you know is right for you in order to not gain weight!

Good luck girl!!!

Take a deep breath it's gonna be OK!

Donna x

PS Where do you live?

> > >

> > > Tammy, Amusement parks are not out of the question BUT you have

> to

> > build into the cost for your day a rental of an ECV, it's one of

> > those chairs that will allow you to drive around the park. They're

> > usually about $40/day. I acutally bought one to have for myself

> and

> > now whenever we are going on a trip or to a park I have my own to

> > take with me. It allows you to exert your energy on things that

> > matter and not on walking all around the park. If you don't have

> one

> > you won't last long at a park. Good luck!

> > > :}

> > > J.

> > >

> > > [ ] New fatigue question

> > >

> > > Is this the new normal? It sucks!!! Since DX in Aug.... I was

> > recovering

> > > from surgery. Then I was into marital problems, then holidays.

> So,

> > yeah, I

> > > was tired - but there was a reason. Jan, Feb and March didn't

> bring

> > much

> > > activity. April and May and now that it is starting to warm up...

> I

> > can't

> > > " DO " things that require more than a few hours. I went to help at

> my

> > > daughter's school on Fri. from 11 - 2. By 1:30 I was wondering

> when

> > it would

> > > be over. I got home at 2:30 and slept until 6:00! Today we went

> and

> > walked

> > > around downtown from 1-3. And I came home and slept for 2 hours.

> > Does this

> > > mean I'm a wimp? Is this normal? Do I actually have to PLAN to be

> > totally

> > > exhausted after 2-3 hours of activities? Wouldn't this mean an

> > amusement

> > > park is out of the question? About a month ago, we did go to a

> > science

> > > museaum, where we watched a movie, walked around and then watched

> a

> > > different movie. Then went to walk around a mall. I was tired,

> but

> > not

> > > totally exhausted, though I did sleep in the car on the way home.

> > But the

> > > past couple weeks - tired!

> > >

> > > Is there something else I should be doing? I see the onc in about

> 2

> > weeks,

> > > I'll mention it to her. But it just doesn't seem like a 36 yo

> > should be this

> > > tired. Or is this one of those side effects that just showed up

> and

> > will

> > > hopefully disappear again.

> > >

> > > Sorry I'm so negative. On the way home today when had to change

> > plans so I

> > > could lay down, I heard the frustrated " OK " sighs of the 13 and 8

> > yos. Along

> > > with my own frustration, theirs made it worse.

> > >

> > > Tammy

> > >

> > > <http://geo.. com/serv? s=97359714/ grpId=14762801/

> > grpspId=17050616 28/msgI

> > > d=10140/stime= 1212338651/ nc1=5191945/ nc2=5191951/ nc3=4507179>

> > >

June 3, 2008

Donna,

Thanks for the honesty.I live in mond,Ca.I am about an hour or

so north of Los Angeles.Very close to Airforce Base.Where are

you and others here located? Anyone near me?

Thanks

SharonS

In , donnaberry99 <no_reply@...> wrote:

>

> Hi Sharon S,

> Don't worry too much about the Gleevec side effects. I love the

help

> of this web site and these awesome people have helped me through

some

> rough times but I have to admit if someone is sick I actually skip

> through their posting or I will for sure develop whatever they

> have!!!! Thank God other CML warriors post them back on these

matters

> and commiserate with them.

> I know others have said this but you are not alone now with this,

most

> of what you will feel we all have felt at one time or another and it

> has subsided.

> The weight gain is a huge deal for me I have always been mega weight

> conscious and people always said " you have a great figure why do you

> worry " and I would know I had a great figure because I did

worry!!!!

> I have gained 30+lbs but to be really really honest Sharon I haven't

> tried as hard as I did before dx (diagnosis), I certainly don't

> exercise anymore (used to run 5ks) as I am too tired and I eat candy

> bars which I hadn't done for years!!!! So when I think about it and

> be honest with myself I have kind of been hiding behind the excuse I

> have CML so I should be able to eat what I want but I am going to be

> better!!! Hey I swam 10 laps today!!! So anyway what I am trying

to

> say is I think you are going to be fine and not gain weight if you

> practice what you know is right for you in order to not gain

weight!

> Good luck girl!!!

> Take a deep breath it's gonna be OK!

> Donna x

> PS Where do you live?

>

> > > >

> > > > Tammy, Amusement parks are not out of the question BUT you

have

> > to

> > > build into the cost for your day a rental of an ECV, it's one

of

> > > those chairs that will allow you to drive around the park.

They're

> > > usually about $40/day. I acutally bought one to have for

myself

> > and

> > > now whenever we are going on a trip or to a park I have my own

to

> > > take with me. It allows you to exert your energy on things

that

> > > matter and not on walking all around the park. If you don't

have

> > one

> > > you won't last long at a park. Good luck!

> > > > :}

> > > > J.

> > > >

> > > > [ ] New fatigue question

> > > >

> > > > Is this the new normal? It sucks!!! Since DX in Aug.... I was

> > > recovering

> > > > from surgery. Then I was into marital problems, then

holidays.

> > So,

> > > yeah, I

> > > > was tired - but there was a reason. Jan, Feb and March didn't

> > bring

> > > much

> > > > activity. April and May and now that it is starting to warm

up...

> > I

> > > can't

> > > > " DO " things that require more than a few hours. I went to

help at

> > my

> > > > daughter's school on Fri. from 11 - 2. By 1:30 I was

wondering

> > when

> > > it would

> > > > be over. I got home at 2:30 and slept until 6:00! Today we

went

> > and

> > > walked

> > > > around downtown from 1-3. And I came home and slept for 2

hours.

> > > Does this

> > > > mean I'm a wimp? Is this normal? Do I actually have to PLAN

to be

> > > totally

> > > > exhausted after 2-3 hours of activities? Wouldn't this mean

an

> > > amusement

> > > > park is out of the question? About a month ago, we did go to

a

> > > science

> > > > museaum, where we watched a movie, walked around and then

watched

> > a

> > > > different movie. Then went to walk around a mall. I was

tired,

> > but

> > > not

> > > > totally exhausted, though I did sleep in the car on the way

home.

> > > But the

> > > > past couple weeks - tired!

> > > >

> > > > Is there something else I should be doing? I see the onc in

about

> > 2

> > > weeks,

> > > > I'll mention it to her. But it just doesn't seem like a 36 yo

> > > should be this

> > > > tired. Or is this one of those side effects that just showed

up

> > and

> > > will

> > > > hopefully disappear again.

> > > >

> > > > Sorry I'm so negative. On the way home today when had to

change

> > > plans so I

> > > > could lay down, I heard the frustrated " OK " sighs of the 13

and 8

> > > yos. Along

> > > > with my own frustration, theirs made it worse.

> > > >

> > > > Tammy

> > > >

> > > > <http://geo.. com/serv? s=97359714/ grpId=14762801/

> > > grpspId=17050616 28/msgI

> > > > d=10140/stime= 1212338651/ nc1=5191945/ nc2=5191951/

nc3=4507179>

> > > >

June 3, 2008

Hi Sharon, as I recall, it's been 4 years, the side effects only lasted about 2

months, and then things got better. and everyone is different, you may not have

any of the side effects others have. Like the new drug I am on now. The first

week so far has been the worst, the last week, the best. So our bodies

acclimate after a while, so don't' waste your time worrying about side effects,

you may not even have any. Good luck, Bobby

serenitywon <serenitywon@...> wrote: