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> To all that are new and don't know Joan, please keep posting. It

will help

> us all get back to " normal " through our grief and loss, and it will

help us

> to carry on her legacy of helping others cope with this disease in a

> positive way.

>

> Please, don't feel it " isn't a good time " to post. At the same

time, you will understand our grief and loss if you look back over

old posts and see that she was truly a shining star. (this is not my

post for you, Kathie! I'm still working on that....). Cindi in PA

**If I can ad my 2 cents here as well. Also to the new folks**

Do not be frightened by Joans passing. It occurred to me reading all

of these wonderful posts that they might be scary to someone who is

new and doesn't know Joans story, and is contemplating surgery.

Most of us live quite well with A and it is generally not a 'fatal'

disease. Joan had very radical, complicated surgery and had several

other serious health issues as well.

The Heller Myotomy that most of us have had and speak of is fairly

routine and uncomplicated. All surgery carries risks but her

esophogectomy (sp?) was much, much more complicated than that.

If you are new, go back a few months and read some of her posts -

it's easy to find, she was here very regularly. She was very

informative and caring - as someone else said here 'like your second

mom in your achalasia family'. She will be sorely missed.

We have very big shoes to fill.

Happy Swallowing!

in Va.

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Guest guest

,

This is an excellent point ... I am sorry I did not think to write

it. That is another example of why we all need each other.

Kathie .. Pittsburgh, PA USA

*************************************************************

> **If I can ad my 2 cents here as well. Also to the new folks**

> Do not be frightened by Joans passing. It occurred to me reading

all

> of these wonderful posts that they might be scary to someone who is

> new and doesn't know Joans story, and is contemplating surgery.

> Most of us live quite well with A and it is generally not a 'fatal'

> disease. Joan had very radical, complicated surgery and had several

> other serious health issues as well.

> The Heller Myotomy that most of us have had and speak of is fairly

> routine and uncomplicated. All surgery carries risks but her

> esophogectomy (sp?) was much, much more complicated than that.

> If you are new, go back a few months and read some of her posts -

>

> in Va.

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  • 3 years later...

Hi, I went to Ann Arbor, all went well with the infusion.  Last week I met a

couple there, he is the one with the cml.  This week I met them again and got

their names this time! and Doreen, I gave them this email address,

hopefully we will hear from them.  is also in the XL228 trial. I visited

with Len and Ernie for a bit, when I get there, I go to their motel, and Ernie

takes me to the hospital and picks me up when I am done.  Usually we go to

dinner, this time I took a quick nap and came home, no dinner, didn't feel like

it. That's it, have a great weekend everyone, love, Bobby

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club

09/2006 -  out of CCR

04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

 

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