Hello...There's several of us that have been in contact in various ways with
either Deborah and/or Robert (the latest being Edith on Sunday) .........
I've been designated the one to forward the information to you for all of
us for the next few weeks....some of what I wrote last night is now a
duplicate because you've heard from The Lady of the Hour herself this
morning..and don't you just love the way she signs off ...... Hugs and
Warm Fuzzies,
Deborah aka Tenacity, But for the Grace of God, Go I! But please bear
with me as there's more you might like to know.
Today, Monday, we know is that they meet with all the doctors and
other medical staff and Deborah begins a set of 32 tests that must be taken
before surgery which, at this point in time is scheduled for is Wednesday at
10:30 am EST. (I will confirm the time and send a reminder on Tuesday
night).
Usually, Deborah has had time to research her tests and to understand enough
of what was going to happen to her so a lot of the fear was removed.....
This time, everything has moved so quickly, there was no time for research
which makes it all the more unnerving for her. She no longer has any veins
showing and the pain that results is unbearable. And, now, there is the
additional factor of Ovarian Cancer that has to be dealt with. And, yet,
none of these 32 tests mentioned above include tests for the ovarian cancer
which will also be done.
Deborah and Robert just "found out" about the Ovarian Cancer this past
Friday when Robert went and picked up Deborah's records from their local
doctor to take them to NY and she read her own files....it showed earlier
notations regarding Chiari and also for Ovarian Cancer which is in her
family....the doctors failed to retest or to notify her or to follow up on
these two things...and nobody caught it.....and now she's paying the price.
Even though it's Deborah who has been through test after test, poked and
prodded by doctor after doctor, until there's nothing left to poke,
diagnosed and mis-diagnosed, given the good news only to hear, "no, sorry,
we made a mistake, it's bad news" over and over again, Robert's been there
with her.....and we all know it's just as bad for the spouse watching the
loved one go through this.....they are a team and they suffer together as
one....
therefore, we all need to provide all the support they both need....the
support that we, ourselves, would like if we were in their shoes...... and
in any way we can.......If you would like to, you can do any one or all of
the following to show your support for them...........you can write them a
word of encouragement through this PD venue we have, ..............you can
go get a get well card and while you're writing the card out, think about
enclosing a check in the card that
you send or you can make a donation to Tom Berdine's YOP site as he has a
special fund set up for Deborah...or come up with a supportive idea
youself....just as long as we are all there to support them. Contact
information is listed below in case you want to do any of these things.
They have spent all their savings, have tremedous medical bills and money
would be very helpful. When they were in NY last time for the
consultation, it was $24/hour to hook up online to let us PDers and the
folks back home know Deborah's status. Kathleen is currently checking out
cheaper ways to do this.
I am putting my email address down so in case you would like to contact me
directly. We will keep you posted as we get information as to what's
happening...
Joan Hartman [log in to unmask]
Robert Setzer
[log in to unmask]
Deborah Setzer
[log in to unmask]
Tom Berdine YOP site with special fund for Deborah
www.youngparkinsons.com/
Long Island Jewish Medical Center
270-05 76th Avenue
New Hyde Park, NY 11040
718-470-7000
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