Re: Quality vs. Quantity

[Guest guest]

<confused>

Did I miss something?

<doesn't get what your reffering to:x>

Pete

Warning! The System is experiencing extremely low Caffeine Levels, insert

coffee and press enter to continue

[Guest guest]

Jennette,

Maybe I missed something, but I have no idea what subject/topic you're

talking about in your recent email. What is it that's so touchy?

June

[Guest guest]

I feel the same I am not sure what is so touchy?

Sally

[Guest guest]

Hi June... it's up there in the subject line. Sorry if I wasn't clear, my

friend and I just use those two words when we talk about this. It was habit

to just say. What I'm referring to is... " Quality of life vs. Quantity of

life. " Having surgery upon surgery vs. living life to the fullest. I know

this is extremely personal, but I would like to hear what people have to

say. Those of you on the Crew from the beginning know who I am talking

about as the friend who leans very heavily on the " quality " side

Jennette

----- Original Message -----

> Maybe I missed something, but I have no idea what subject/topic you're

> talking about in your recent email. What is it that's so touchy?

[Guest guest]

wow what a question!! vry personal and I am sure everyone has different

opinions, so here's mine.

I am 23 years old, I have had 24 surgeries since I was 12. Some major, some

minor. I don't think I really grasped onto reality until the past4 years. I

always was just a typical teen, rebelious, stubborn, and of course azy, I

look back on my teen years and would love to have done more than I did. In

coolege I kinda came out of my shell, and began to live day to day and not

for the future.

My first year of college, I was able to walk with only a slight wobble and

remeber moving into the dorms and racing my friends down from the 9th floor

to their room on the 2nd floor. I had so much fun that year and the

following 3 years, altho my health went down fast I didn't, I had friends who

were there to carry me up to our sorority floor (at the time was on 4th floor

withno elevator, and theres no way i could make it!) and I took many leaves

of absence to deal with surgery and such but when I would return to school I

always had friends encouraging me to try things i know i really would have a

hard and just have fun.

I guess I live for today, and just think back and say, " wow I wish I did that

while I could " well in 5 years, I can, hopefully, look back and have no

regrets of missed opportunties, and know i lived the best lifeI could live.

Of course I still battle this NF stuff and have pain almost constantly, its

not the focus of my tthoughts and my everyday life. If I need surgery, I

have surgery but push myself, sometimes to hard, to get back to normal as

fast as I can.

One way I see my life, is, this is the healthiest I will ever be for the rest

of my life, so I do whatever I can and want while I can.

this whole letter may not make sense, and theres alot about my life not

included, of course. but I guess what I really feel is just don't sweat the

small stuff, deafness is adaptable if you let yourself adapt, balance/walking

problems can be dealt with if you accept them and deal with them

okie, enuff from me, hope some of this makes sense

Caren

[Guest guest]

I think that's a decision a lot of us are faced with; when I talk about FRS to save hearing, the doc cautions about long term malignancy; and that's when I say, quality is more important than quantity TO ME. I think it very much depends upon where you are in life. I live alone, by sons are own their own, and I do not wish to be dependent any more or any sooner than I have to; I am willing to undergo 4 brain surgeries to support this decision and delay probable inevitable deafness. By the same token, if I were a mother, with a few young children, a husband--my decision would be totally different. Just my point of view, but I also would be interested in what others have to say on the subject of quality vs. quantity. marie

Quality vs. Quantity

This is a very personal subject that I will risk bringing up on here. I'm not sure I saw us talk about it in the Crew, except when a very close friend of mine was still on this list. We discussed it briefly at the time, a few people spoke up about it, not many bc the list was still quite small ithen. I will admit that I have for many many years wrestled with this myself. I have two very very close friends on opposite sides and they both make tremedous sense to me, however one of them does seem to make alot more. I would love to hear what others have to say about this topic, where they stand and why? If you are uncomfortable posting to the list about this, please email me personally. I think this subject might be something many of us grapple with, personally or bc of loved one.

Jennette

jennette@...

[Guest guest]

In a message dated 4/10/2000 12:54:07 AM Eastern Daylight Time,

.L.Przybysz.3@... writes:

<< It's all about balance, my friends! >>

But we don't have any!

::falls off sidewalk::

Pete

[Guest guest]

Jennette,

Why do you think I went to NZ now??? My life, physically, is calling it

quits. I am sure I am better, physically, then some but I have never

felt this way before. My balance sucks, I have no energy and I feel

like I am 80. I need to use a cane now, tho I am trying not to bacome

to dependent on it. Good ole denial working. Even after I had GK and

all the gloom and doom I have been reading about it, I still may need MS

on this right AM. My doctor said I need a new MRI to see if it worked

and if it did not, then I am out of options. So I get cancer from this

GK so what?! Like I really had a choice. I am 40 right now and as far as

I am concerned my life is over. I expected to be married with 5 kids by

now. No chance on either one happening to me. So I pick the other

option and that is LIVE. Go places and do things cause i dont know how

much longer I will be able to. I also think I am letting this wall I

built up around me down a litted and seeing how sick I really am. It is

getting so hard to fight anymore. So I am going to Sani Diego in July

and see the zoo and live. As far as I can see I am going to die freom

cancer from the GK, stroke or something from the MS or just something

from this blasted NF2, but when all is done I will have no epith like

Marrianne or Adam, but they will say one thing and that is she LIVED!!!!

Joanie - who is waiting for more dirty jokes Mikey sends her:):)

[Guest guest]

It's all about balance, my friends!

[Guest guest]

Jennette,

I'm also confused on what you're trying to ask. Can you please explain to us

your question more?

Mark

----Original Message Follows----

From: ManelyCat@...

Reply-To: NF2_Crewegroups

To: NF2_Crewegroups

Subject: Re: Quality vs. Quantity

Date: Sun, 9 Apr 2000 15:23:18 EDT

Jennette,

Maybe I missed something, but I have no idea what subject/topic you're

talking about in your recent email. What is it that's so touchy?

June

______________________________________________________

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[Guest guest]

Jennette,

Okay now it's clear. I'd lean towards the " QUALITY OF LIFE " side myself.

Mark

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Very well put Joanie.

Mark

----Original Message Follows----

Reply-To: NF2_Crewegroups

To: NF2_Crewegroups

Subject: Re: Quality vs. Quantity

Date: Sun, 09 Apr 2000 21:25:50 -0400

Jennette,

Why do you think I went to NZ now??? My life, physically, is calling it

quits. I am sure I am better, physically, then some but I have never

felt this way before. My balance sucks, I have no energy and I feel

like I am 80. I need to use a cane now, tho I am trying not to bacome

to dependent on it. Good ole denial working. Even after I had GK and

all the gloom and doom I have been reading about it, I still may need MS

on this right AM. My doctor said I need a new MRI to see if it worked

and if it did not, then I am out of options. So I get cancer from this

GK so what?! Like I really had a choice. I am 40 right now and as far as

I am concerned my life is over. I expected to be married with 5 kids by

now. No chance on either one happening to me. So I pick the other

option and that is LIVE. Go places and do things cause i dont know how

much longer I will be able to. I also think I am letting this wall I

built up around me down a litted and seeing how sick I really am. It is

getting so hard to fight anymore. So I am going to Sani Diego in July

and see the zoo and live. As far as I can see I am going to die freom

cancer from the GK, stroke or something from the MS or just something

from this blasted NF2, but when all is done I will have no epith like

Marrianne or Adam, but they will say one thing and that is she LIVED!!!!

Joanie - who is waiting for more dirty jokes Mikey sends her:):)

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Good point Pete, know I understand my problems!! Marie

Re: Re: Quality vs. Quantity

>In a message dated 4/10/2000 12:54:07 AM Eastern Daylight Time,

>.L.Przybysz.3@... writes:

>

><< It's all about balance, my friends! >>

>

>But we don't have any!

>

>::falls off sidewalk::

>

>Pete

>

>

>

>

[Guest guest]

Joanie,

How many times have you had the GK? Do you really feel you will get Cancer

from this? Where did you go for the GK? Can you give me the Dr. name and

number?

My doctors told me little over a week ago I should have the Gamma Knife but I

am researching this treatment.

Sally

[Guest guest]

Caren,

That was beautiful I can't agree more. When I was 18 years old my leg was

numbed from my surgery (can happen in 3% of cases) from sitting. I remember

my friends carrying me to bonfires haha but I loved being with them. They

used to call me Gimp!

I agree about the quality of life, but making it last as long as you can

(both). It's exactly how you put it Caren.

Sally

[Guest guest]

Caren,

That was beautiful I can't agree more. When I was 18 years old my leg was

numbed from my surgery (can happen in 3% of cases) from sitting. I remember

my friends carrying me to bonfires haha but I loved being with them. They

used to call me Gimp!

I agree about the quality of life, but making it last as long as you can

(both). It's exactly how you put it Caren.

Sally

[Guest guest]

Caren,

That was beautiful I can't agree more. When I was 18 years old my leg was

numbed from my surgery (can happen in 3% of cases) from sitting. I remember

my friends carrying me to bonfires haha but I loved being with them. They

used to call me Gimp!

I agree about the quality of life, but making it last as long as you can

(both). It's exactly how you put it Caren.

Sally

[Guest guest]

Joanie,

<< Right now we dont have the long term studies result and if we did, there

are so many variables to concider that I would be skepitcal of ANY results.

>>

Americans might now have the long term results but " in the late 1960's Lars

Leksell M.D., a Swedish neurosurgeon at the Karolinska Institute in Stockhom

pioneered the Gamma Knife. " I will be contacting the Karolinska Institute in

Stockhom and find out their result for cancer causing statistics on the Gamma

Knife.

I have a few questions for you. If I am being obtrusive please let me know. I

am a journalist and I do everything to find out what is going on. Besides

that this is US and it would be great to spread knowledge. By the way when I

met with my Gamma Knife doctor (Dr. Helenowski) I had taped our appointment

so I can have that transcription.

My questions to you:

When did you have the Gamma Knife? Did you have side effects (paralysis,

imbalance, memory loss)?

If you had side effects was it temporary or permanent?

Dr. Helenowski told me that the tumor swells after the radiation and that in

order to tell if there were any side effects you would need to wait a few

months for the swelling to go down. Did you have any symptoms during this

time?

Do you know of anyone else that had the Gamma Knife? Would they be willing to

talk with me?

I am trying to make a decision to have the GK this summer or to lose precious

time and risk the growth of my tumor while I complete my senior year at

Columbia College.

Sally

[Guest guest]

Sally,

I had GK, once. With DR. Hodge at University Hopsital in NY.

They have the ONLY GK machine in upstate NY.

The thing about GK and cancer makes me laugh. I mean ANY radiation will

give you a chance of cancer. How do you think some cancers are caused?

Ask the people who were bombed in Japan in WW2. Right now we dont have

the long term studies result and if we did, there are so many variables

to concider that I would be skepitcal of ANY results. They tend to

generalize to much as far as I am concerned. I mean you can get cancer

from the high power lines. We have a cancer cluster in my area with

kids. Thier houses are near a chemical dump that was abanden years

ago. Of course the state will not admit it because look at the millions

of dollars they stand to lose. So a few kids dies and the incident of

misscarrages is high(being very very sarcastic)so what?

So we MAYBE get cancer due to this, But you can, in rare forms, get

cancer from NF2. At least, to some degree, there is a cure for cancer

and not at the momet, I say at least 20 years, a cure for NF2. I dont

see a cure for NF2 for people that already have it, I see a cure for

the fetus, but not us.

It all goes back to Jennettee's question, we have this, like it or not,

NOW decide on quality verses quanity.

Joanie

[Guest guest]

Sally.

Why GK why not FSR no side effects as far as I know with other crewbies who

have had this treatment. Marie Drew or F have all the info on this...

.

Re: Quality vs. Quantity

> Joanie,

>

> << Right now we dont have the long term studies result and if we did,

there

> are so many variables to concider that I would be skepitcal of ANY

results.

> >>

>

> Americans might now have the long term results but " in the late 1960's

Lars

> Leksell M.D., a Swedish neurosurgeon at the Karolinska Institute in

Stockhom

> pioneered the Gamma Knife. " I will be contacting the Karolinska Institute

in

> Stockhom and find out their result for cancer causing statistics on the

Gamma

> Knife.

>

> I have a few questions for you. If I am being obtrusive please let me

know. I

> am a journalist and I do everything to find out what is going on. Besides

> that this is US and it would be great to spread knowledge. By the way when

I

> met with my Gamma Knife doctor (Dr. Helenowski) I had taped our

appointment

> so I can have that transcription.

>

> My questions to you:

>

> When did you have the Gamma Knife? Did you have side effects (paralysis,

> imbalance, memory loss)?

>

> If you had side effects was it temporary or permanent?

>

> Dr. Helenowski told me that the tumor swells after the radiation and that

in

> order to tell if there were any side effects you would need to wait a few

> months for the swelling to go down. Did you have any symptoms during this

> time?

>

> Do you know of anyone else that had the Gamma Knife? Would they be willing

to

> talk with me?

>

> I am trying to make a decision to have the GK this summer or to lose

precious

> time and risk the growth of my tumor while I complete my senior year at

> Columbia College.

>

> Sally

>

>

>

>

>

>

>

[Guest guest]

Where were you Joanie when we where discussing the " NF2 Pill " and Barbara F

statement about tests against NF2 Mouse models. ~|)

.

***********

you wrote

>At least, to some degree, there is a cure for cancer

> and not at the momet, I say at least 20 years, a cure for NF2. I dont

> see a cure for NF2 for people that already have it, I see a cure for

> the fetus, but not us.

Re: Quality vs. Quantity

> Sally,

>

> I had GK, once. With DR. Hodge at University Hopsital in NY.

> They have the ONLY GK machine in upstate NY.

> So we MAYBE get cancer due to this, But you can, in rare forms, get

> cancer from NF2. At least, to some degree, there is a cure for cancer

> and not at the momet, I say at least 20 years, a cure for NF2. I dont

> see a cure for NF2 for people that already have it, I see a cure for

> the fetus, but not us.

>

> It all goes back to Jennettee's question, we have this, like it or not,

> NOW decide on quality verses quanity.

> Joanie

>

>

>

[Guest guest]

Very well put, Joanie! I just want to add that we could get cancer from

sunlight also, but that does that mean we should stop venturing outside and

live like hermits? A few years ago people were saying that cell phones cause

brain tumors, but now you see so many people talking on those blasted things

(especially on rush hour traffic).

There's other center's for the GK now than there were 5 years ago, but I

don't know exactly where. I do know though that the first one in the US ewas

in Pittsburgh General Hospital.

Again, kudos for your email.

Mark

----Original Message Follows----

Reply-To: NF2_Crewegroups

To: NF2_Crewegroups

Subject: Re: Quality vs. Quantity

Date: Mon, 10 Apr 2000 20:19:07 -0400

Sally,

I had GK, once. With DR. Hodge at University Hopsital in NY.

They have the ONLY GK machine in upstate NY.

The thing about GK and cancer makes me laugh. I mean ANY radiation will

give you a chance of cancer. How do you think some cancers are caused?

Ask the people who were bombed in Japan in WW2. Right now we dont have

the long term studies result and if we did, there are so many variables

to concider that I would be skepitcal of ANY results. They tend to

generalize to much as far as I am concerned. I mean you can get cancer

from the high power lines. We have a cancer cluster in my area with

kids. Thier houses are near a chemical dump that was abanden years

ago. Of course the state will not admit it because look at the millions

of dollars they stand to lose. So a few kids dies and the incident of

misscarrages is high(being very very sarcastic)so what?

So we MAYBE get cancer due to this, But you can, in rare forms, get

cancer from NF2. At least, to some degree, there is a cure for cancer

and not at the momet, I say at least 20 years, a cure for NF2. I dont

see a cure for NF2 for people that already have it, I see a cure for

the fetus, but not us.

It all goes back to Jennettee's question, we have this, like it or not,

NOW decide on quality verses quanity.

Joanie

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Hi Sally,

I know you asked for Joanie to answer these questions regarding GK (Gamma

Knife), but please allow me to answer them also because I've had the surgery

done as well.

Mark

----Original Message Follows----

From: GospelBlessings@...

My questions to you:

When did you have the Gamma Knife?-July of 1996

Did you have side effects (paralysis,--no paralysis of any kind: facial or

otherwise

imbalance--equilibrium problems...yes,

memory loss--what was the question again? (heh I'm just teasing) but no, no

memeory loss. I did though lose my hearing on the side they GK'ed, but since

my hearing on that particular side was gone anyways it didn't really matter.

If you had side effects was it temporary or permanent?--The only side effect

I had was a headache after they took the metal frame off to stailize my

head.

Dr. Helenowski told me that the tumor swells after the radiation and that in

order to tell if there were any side effects you would need to wait a few

months for the swelling to go down. Did you have any symptoms during this

time?--Ya know it's funny, I didn't experience any swelling but they warned

me of it. They said if I needed it they would prescribe Pregnisone for the

swelling, but they were cautious about giving it to me. Luckily for me, I

didn't experience any side effects other than the headache after they

removed the frame. And the hearing loss of course.

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Jennette,

Personally I have had a pretty good life, God has blessed me

with a great family and great friends a wonderful husband, and tons of

laughs. Yeah there's rocky places here and there and everyday life isn't so

easy. But you know what who's is? I mean some people have horrid events

happen in their life's do you ask them if they'd rather just call it quits

and say do you wish you'd never been born. Nah, it's just a rough spot we

have to over come. Everyone has a challenge of some sorts to deal with.

I look at other people and see the stuff they have to deal with and thank the

Lord that he has given me the courage and willpower to get where I am today

for I have so much I want to accomplish yet.

Sara

>

> Hi June... it's up there in the subject line. Sorry if I wasn't clear, my

> friend and I just use those two words when we talk about this. It was habit

> to just say. What I'm referring to is... " Quality of life vs. Quantity of

> life. " Having surgery upon surgery vs. living life to the fullest. I know

> this is extremely personal, but I would like to hear what people have to

> say. Those of you on the Crew from the beginning know who I am talking

> about as the friend who leans very heavily on the " quality " side

>

[Guest guest]

> okie, enuff from me, hope some of this makes sense

> Caren

It made sense Caren. Wow 24 surgeries! You are so right about adapting. I

couldn't agree more.

Sara