Re: Getting back into regular life, socially

[Guest guest]

Are you kidding, I bet everyone's social life changed. Did you ever notice

how certain people would quit talking while you were in the room? That is

the hurtful one. However, most of these people are unsure of what to say, how

they can help. I told my close friends to treat like they always had. If I

am physically not up to it, I will let them know when I have to stop. And

they are allowed to tease me about it and humbly tease myself. I also really

try hard to educate people. Educate them on what all cancer patients go

through mentally and physically. How they should treat their friends who have

cancer. I even go into statistics for Leukemia, Stem Cells and whatever it is

vogue at the time.

I speak in front of business groups, charity events and rallies that start

off fund raising.

In this, I have found that there is an old you and a new you. The new you

does not have the energy or capacity to drink alcohol as much as old you, but

new you is just a much fun and that same person people like to be around. I

tell my friends to treat me the same and for the most part they do. I do not

do much late night or all day drinking events with them, but I am still in

the trenches whenever I can be.

And they are supportive. I have recently decided to ride in the MS150.

Although the old me would have done this without training, this will be a very

hard chore for me. However 4 people have already committed to being a part of

this road race.

Many people want to comfort you, but they do not know what to say. To help,

but don't know what you need. Just accept it all and thank them, whether is

made things better for you or not. It surely made things better for them.

Keep the faith.

Matt

ville, FL

In a message dated 5/29/2007 8:52:18 P.M. Eastern Daylight Time,

letitbe@... writes:

Hello everyone, here in Milton, FL. Exactly 90 days ago today I

received my CML diagnosis. Things are going ok. I go back for a CBC visit

next

week. My last visit was a little rough with my WBC having come up to 12.9.

That really, really bothered me. But, several of you posted and assured me

that was very normal to roller coasted a bit for the first six months. The

post and personal emails were great and really helped me through what was an

emotional week.

Now, I am trying to re-assimilate back into a routine and lifestyle and it

is a real struggle for me. Work is going pretty well. I am a sales rep, I

had been wanting to cut loose of some territory for a few years, this was a

no

brainer for me to do so at this point. I set my own schedule, so that is all

pretty good. But my social life is really hurting. I am 41, married,

Tabitha - 16 happy years, father , -13yr old. We love to outdoor

entertain,

cookouts, lots of outdoor activities, etc. I was used to being the life of

the events. A few weeks ago at a cookout/bonfire at some friends house, I

actually fell asleep in my lawn chair at 8pm. I was always the guy that

cooked

the best, drank the most, karaoke'd the loudest, you get the idea. We all

just had so much fun. I am just having so much trouble finding my stride

now.

I admit it (at least for me), I find it hard to chill out with a Diet Coke,

while everyone else is having a diet beer.

Anyone else go through this? I would love to hear from anyone with thoughts

on the matter. This is the stuff that the Onc just don't have answers for.

AND, for me, it is part of my life, or at least used to be.

Please feel free to email me direct, if you wish: __Letitbeaol (DOT) _Le_

(mailto:_Letitbe@...) _

(mailto:_Letitbe@..._ (mailto:Letitbe@...) )

Flocken

Dx 03/01/07

Gleevec 400mg

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi sorry of your C M L I ,m 65 about 1year 5months on 400 Gleevec. A few

things that don,t happen are alcohol sun, what does happen ,4 hours you need a

nap,eyes get watery at times,sorta short tempered don't know why,cramps at times

,caution stretching in morning.Note Gleevec needs to be stored at least 65% or

it will loose it,s effectiveness.

There are worse cases depending on your body and gleevec.

[ ] Getting back into regular life, socially

Hello everyone, here in Milton, FL. Exactly 90 days ago today I

received my CML diagnosis. Things are going ok. I go back for a CBC visit next

week. My last visit was a little rough with my WBC having come up to 12.9.

That really, really bothered me. But, several of you posted and assured me

that was very normal to roller coasted a bit for the first six months. The

post and personal emails were great and really helped me through what was an

emotional week.

Now, I am trying to re-assimilate back into a routine and lifestyle and it

is a real struggle for me. Work is going pretty well. I am a sales rep, I

had been wanting to cut loose of some territory for a few years, this was a no

brainer for me to do so at this point. I set my own schedule, so that is all

pretty good. But my social life is really hurting. I am 41, married,

Tabitha - 16 happy years, father , -13yr old. We love to outdoor

entertain,

cookouts, lots of outdoor activities, etc. I was used to being the life of

the events. A few weeks ago at a cookout/bonfire at some friends house, I

actually fell asleep in my lawn chair at 8pm. I was always the guy that cooked

the best, drank the most, karaoke'd the loudest, you get the idea. We all

just had so much fun. I am just having so much trouble finding my stride now.

I admit it (at least for me), I find it hard to chill out with a Diet Coke,

while everyone else is having a diet beer.

Anyone else go through this? I would love to hear from anyone with thoughts

on the matter. This is the stuff that the Onc just don't have answers for.

AND, for me, it is part of my life, or at least used to be.

Please feel free to email me direct, if you wish: _Letitbeaol (DOT) com_

(mailto:Letitbeaol (DOT) com)

Flocken

Dx 03/01/07

Gleevec 400mg

************ ********* ********* ******** See what's free at http://www.aol.

com.

[Guest guest]

Chris--

I totally understand....I am a wife of a CML-er! My husband was diagnosed

last July, and has experienced some of the same things. My husband was

diagnosed when our son was just 2.5 months old, so our life already went

from pretty social...to...well...nothing!! Life changes so much when you

have a newborn, and life changed even more when was diagnosed. We, too,

entertain most weekends...and really enjoyed his beer and wine. I cant

really say he would be considered a " drinker " , but funny how when you enjoy

something a little, and then it is taken away, you want it even more. Before

diagnosis, some weekends he might not have any alcohol and other weekends he

might have 3-4 beers over the course of an afternoon/evening BBQ or poker

game. Well, that cant happen anymore. He doesnt care too too much...some

times it seems I care more than he does. He cares because he really misses a

frosty cold schooner of Pabst with a pickled egg and pretzels (that is the

" favorite " at a local bar here in Long Beach, CA called Joe Jost's). In

fact, he still did partake in a beer or two weekly, but after getting the

news last week that his liver is 6 times the toxicity rate, and having been

removed from Gleevec for 7 days now waiting for his liver to get back to

normal range, it is just a reminder that he does have cancer and needs to

live differently...sometimes it was easy to forget he had CML, as he had few

side affects and didnt change how he lived too terribly much.

All in all, misses the option to go have a beer, and when I talk to him

about it, he always says " Yeah...well...it's way cooler to feel good, and be

alive to enjoy my son, than to be able to drink a beer or two. " I am sure

here and there on special occasions (anniversary, etc.), he may have a beer

or some wine, but for now...he's not. I know some people believe that you

need to live " normally " and show the cancer it's not going to get the best

of you. And I guess that is fine if you are testing normal, and feeling

well, etc...but when got back his results, it was a slap in the

face...and he finally goes.. " You know, I guess I cant always want my life

how it used to be..it will never be how it used to be, I need to get used to

this. "

hardly ever posts to this forum, I do. But I bet he might share his

experience and thoughts on this subject...from one fellow beer drinker to

another. I will pass on your message.

I am sorry this is hard for you, and I will keep you in my thoughts and

prayers...

Take care,

Cervera

>From: letitbe@...

>Reply-

>

>Subject: [ ] Getting back into regular life, socially

>Date: Tue, 29 May 2007 20:51:19 EDT

>

>Hello everyone, here in Milton, FL. Exactly 90 days ago today I

>received my CML diagnosis. Things are going ok. I go back for a CBC

>visit next

>week. My last visit was a little rough with my WBC having come up to

>12.9.

>That really, really bothered me. But, several of you posted and assured

>me

>that was very normal to roller coasted a bit for the first six months.

>The

>post and personal emails were great and really helped me through what was

>an

>emotional week.

>

>Now, I am trying to re-assimilate back into a routine and lifestyle and it

>is a real struggle for me. Work is going pretty well. I am a sales rep,

>I

>had been wanting to cut loose of some territory for a few years, this was

>a no

>brainer for me to do so at this point. I set my own schedule, so that is

>all

>pretty good. But my social life is really hurting. I am 41, married,

>Tabitha - 16 happy years, father , -13yr old. We love to outdoor

>entertain,

>cookouts, lots of outdoor activities, etc. I was used to being the life

>of

>the events. A few weeks ago at a cookout/bonfire at some friends house, I

>actually fell asleep in my lawn chair at 8pm. I was always the guy that

>cooked

>the best, drank the most, karaoke'd the loudest, you get the idea. We all

>just had so much fun. I am just having so much trouble finding my stride

>now.

> I admit it (at least for me), I find it hard to chill out with a Diet

>Coke,

> while everyone else is having a diet beer.

>

>Anyone else go through this? I would love to hear from anyone with

>thoughts

>on the matter. This is the stuff that the Onc just don't have answers

>for.

>AND, for me, it is part of my life, or at least used to be.

>

>Please feel free to email me direct, if you wish: _Letitbe@..._

>(mailto:Letitbe@...)

>Flocken

>Dx 03/01/07

>Gleevec 400mg

>

>

>

>************************************** See what's free at

>http://www.aol.com.

>

>

>

[Guest guest]

Hi

If, as it is likely, you get into a good remission, you should be able to be

the same man as before in a few weeks. Or pretty near. I feel actually

better than at least a year before dx, I fully resumed all the sports I

practice and enjoy parties and good food. My family and my true friends are

closer than ever. Alcohol still has to be taken in moderation but I do drink

a beer or a glass or wine once in a while. Not too big a price to pay to

stay alive and in good shape, a lot better than the troopers who had to

endure interferon a few years ago. I think the critical part is the mind, to

put cml aside most of the time and to not be distracted from the simple fun

of life. The show must go on. Take it easy a few weeks or a few months, take

the time to think about what really matters and enjoy just being here.

Cheers and best wishes,

Marcos.

On 5/29/07, letitbe@... <letitbe@...> wrote:

>

> Hello everyone, here in Milton, FL. Exactly 90 days ago today I

> received my CML diagnosis. Things are going ok. I go back for a CBC visit

> next

> week. My last visit was a little rough with my WBC having come up to 12.9.

>

> That really, really bothered me. But, several of you posted and assured me

>

> that was very normal to roller coasted a bit for the first six months. The

>

> post and personal emails were great and really helped me through what was

> an

> emotional week.

>

> Now, I am trying to re-assimilate back into a routine and lifestyle and it

>

> is a real struggle for me. Work is going pretty well. I am a sales rep, I

> had been wanting to cut loose of some territory for a few years, this was

> a no

> brainer for me to do so at this point. I set my own schedule, so that is

> all

> pretty good. But my social life is really hurting. I am 41, married,

> Tabitha - 16 happy years, father , -13yr old. We love to outdoor

> entertain,

> cookouts, lots of outdoor activities, etc. I was used to being the life of

>

> the events. A few weeks ago at a cookout/bonfire at some friends house, I

> actually fell asleep in my lawn chair at 8pm. I was always the guy that

> cooked

> the best, drank the most, karaoke'd the loudest, you get the idea. We all

> just had so much fun. I am just having so much trouble finding my stride

> now.

> I admit it (at least for me), I find it hard to chill out with a Diet

> Coke,

> while everyone else is having a diet beer.

>

> Anyone else go through this? I would love to hear from anyone with

> thoughts

> on the matter. This is the stuff that the Onc just don't have answers for.

>

> AND, for me, it is part of my life, or at least used to be.

>

> Please feel free to email me direct, if you wish:

_Letitbe@...<_Letitbe%40aol.com>_

>

> (mailto:Letitbe@... <Letitbe%40aol.com>)

> Flocken

> Dx 03/01/07

> Gleevec 400mg

>

> ************************************** See what's free at

> http://www.aol.com.

>

>

[Guest guest]

Thanks everyone for their thoughts and experiences with life after the Dx

and getting to feeling better. It is just so hard for me right now with the

whole go back to your normal life, BUT! Tab and I were talking about that last

night. We actually are out of town at the moment, this is something I never

would have done 90 days ago, taken a day off in my prime selling season.

But, with a smaller sales territory and the feeling that she and I needed some

time away from the house, walk on the beach, time to decompress and talk,

here we are and there I was last night finally posting my question about the

social aspects of life after the Dx. I feel reasonably good, I keep thinking,

what is the worst that could happen if I were to once in a while be old

then I have been reading 's experience, ok, don't need to do that.

Thanks for sharing, you saved me from even going there. Even though it

will be different for everyone, I do not need to go there. I am just

frustrated

that I do feel reasonably well, and am not living my old life. I go agree

this is a very small price to be alive and not have such an easy treatment.

My goodness, how blessed I know I am.

Ok, my vent is over! thanks for listening,

Chris

************************************** See what's free at http://www.aol.com.

[Guest guest]

Oh Absolutely!

Us Sales people just know that our families won't eat without us and our

customers can't live without us!

As a matter fact the whole world will pretty much just crash down around us

if were not productive and saving the day:-) Crazy! But I am sure that's

who we were meant to be.

I try not to stress as much as I use to but then sometimes I get caught back

up into the high strung activity without realizing it. I can sometimes step

back but then I think of the positive side and that's the fact that even

though I have cml I can still do the things I used to.

As a sales rep I would say that now's when you have to use all those

positive things you've learned and continue to apply them to your personal

life and career.

Don't stop dreaming big! Go after your new life like you would that next big

deal!

You can do it!

ez