Hi, and welcome to the group.
I am 12 years old and was diagnosed with Ewings to my right rib cage, mets to my
lungs, at age 5. A good thing to do may be to tell your family, friends, etc.
that going back to complete normalcy is not an option. I have been in remission
for 6 years, and still not EVERYTHING is back to normal. Denial is not an
option is either. I think everyone is like that at first, but you cannot live
by what you wish was happening at the moment. Reality has to sink in at one
point or another, and it is easier for you if your family, friends, etc. can
accept it sooner.

Maybe this helps, but maybe not. Just wanted to let you know what I think.

Lexi

shadoeface2003 <shadoeface2003@...> wrote:
I have searched the web for Ewing's support groups, bu this is one
of the only one's I have found. I am 38 and was diagnosed 7/3/02
with Ewings in my foot. I had 12 months of the "protocol" chemo and
31 radiation treatments. I finished in May of '03, by default. The
chemo was killing me, litterally. My wbc counts were dropping too
low as were my reds. I was having transfusions a week after each
cehmo. I was starting to run high fevers.

After all that the doctor says there is no cancer left, but I remain
skeptical about it. I hear too many stories of re-occurances and
worry that it will happen to me. I was offered an amputation or
raditation. My family talked me into the radiation, now I wish I had
the amputation so I would know the primary tumor was gone. I have
been lucky, no mets. The residual pain from radiation has been
unbearable, but I am stubburn and fight the pain back with over
doing it.

I feel rather alone in this whole fight. My husband has been my rock
and my son is too young to really understand. I have been the
missing mom all year. In his mother's day book to me that he made at
school he wrote my favorite thing to do is lay down. Now that I am
feeling stronger I am trying so hard to make up the past year to
him. The rest of my family, my parents brothers and inlaws are all
living in denial or a fantasy of what has been going on. They have
all run in diffeerent directions and hidden form the reality of my
being "sick". Now that I am done with treatment they all treat and
act as if there was and is nothing wrong with me.

My most recent MRI shows that there is Avascular Necrosis and sevre
damage to my ankle all from radiation. But the family thinks that I
should just "get over being bald" and get on with my life. I am
trying and it seems that it's not enough for them.

anyne else out there having trouble with support from family and
friends????????


Yahoo! Groups Sponsor
To unsubscribe from this group, send an email to:
ewingssarcoma-unsubscribe@yahoogroups.com



Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



---------------------------------
Do you Yahoo!?
Yahoo! SiteBuilder - Free, easy-to-use web site design software

[Non-text portions of this message have been removed]