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OT: I've got good news!
Tue, 19 Sep 2006 11:25:31 GMT
rec.pets.cats.anecdotes
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kilikini...
-L....
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Oh definitely check out the Mayo clinic if you can. I would call them
again if you don't hear something in a couple days. Squeaky wheels and
all that. When I went to John Hopkins for a second opinion on my eye I
had to bug them several times to get the data and report back - the
nurse I talked to actually told me to do so because they handle so many
patients it's easy to fall through the cracks.
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I received a phone call yesterday from the American Cancer Society. Based
upon a letter I sent them regarding my case, they've agreed to give me an
additional grant of $1000 so I can see an oncologist!!!!!!!!!!!!!!!!!!!!!!!
Adrian A...
Helen Wheels...
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All the best. We'll be purring for you still.
kilikini...
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Lesley...
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Everyone's having happy news today!
Lesley
kilikini...
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It does seem like it's a happy news day, doesn't it?
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Slave of the Fabulous Furballs
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This is an important step in declaring my *extremely* rare condition (0.03%
of all tumors are my kind and only 12% of that 0.03 are where mine are
located),
cancer, which is wonderful. If my case is considered cancer, I can get
medical help.
So, I'm calling the Mayo Clinic in Jacksonville, Florida today (they
specialize in tumors like I have) to get an appointment, ASAP. The only
problem is that I have a doctor's appointment next week and I'm worried that
the dates will overlap. My appointment is with a state-funded doctor in the
hope that I can get on disability/medicaid due to my illness, so it's kind
of important to keep. I've been applying for medicaid since April and it's
been a long journey.
But, but, BUT, the important thing is, if I can get the medical profession
kilikini...
kilikini...
kilikini...
to see Aggressive Fibromatosis *as* cancer, it will help other people in the
future!!!!! Half the doctors consider it cancer and half don't; it's right
kilikini...
on the line. Right now, my tumor has spread to my arm, it's in my back
ribcage pressing on my left lung and it's in my upper left chest. If a
tumor goes into your arm, amputation is recommended. :-( The Mayo Clinic
in Jacksonville is the *only* place in the nation that studies this rare
condition and I'm so grateful they're only 5 hours away. I got the grant
(it's $545 just to SEE an oncologist - so there's still more money left for
testing!), and luckily my husband's best friend lives in Jacksonville so we
can spend the night. Life is good right now.
I just had to share my good news. I'm a happy camper. :~)
Marina...
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I'm really happy for you, Kili, but you must be the most optimistic
kilikini...
Adrian A...
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Congratulations! Purrs for more good news in the future. :-)
kilikini...
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I'm hoping! I've talked to the furr-kids and mine are purring for me, too.
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jmcquown...
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Kili, I feel so bad complaining about my aches and pains when I know what
you're going through. I'm so happy you are finding some resources who are
willing to help you and also to help those in the future. You *KNOW* my
purrs are with you!
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Sam...
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Congratulations on the grant. Hope the Mayo can get you in quickly.
Purrs for a successful outcome.
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tension_on_the_wire...
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Hi Kili:
Can I just mention something? Since your condition is so rare, don't
accept what you heard on the phone as final. Many places, especially
if they have a good research reputation, like the Mayo Clinic (is this
a satellite location of the original Mayo Clinic in Rochester, NY, by
the way?), will often consent to treat conditions for free, or at cost,
when there is something in it for them, like being able to add to their
experience in treating a rare tumor, or being able to add to their
resume, so to speak....so do try to negotiate with them if they tell
you that they need $$$ up front. Don't talk to the front desk or the
office managers about it....talk directly to the doctor about it when
he/she is seeing you. They are the ones who have the authority to
over-ride the Clinic policies, whereas the office managers can only run
the business end according to business rules. And they might be
especially helpful if the ramifications of the tumor are severe, such
as a possible necessity for amputation, which I sincerely hope you do
not need. I have known many cases of facilites eating the bill in
order to keep the "interesting" patient.
Good luck with *both* your appointments. You might even need *more*
luck with that Medicaid business than your Mayo Clinic appointment,
given the way things have been running lately!
kilikini...
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Thank you. I was kind of hoping/thinking along those lines, too. I still
have to wait to hear back from the clinic regarding an appointment, but if
they set me up with one, I'm going to go. Oh, and yes, this is a branch of
the Mayo Clinic in Rochester, MN.
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polonca12000...
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We are thinking of you, purring for you, sending lots of best wishes and
gentle hugs,
Polonca and Soncek
kilikini...
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Thank you! This whole thing has been almost unbearably scary and the rate
that the tumors are growing is very frightening. I've just got to get into
radiology to stunt their rapid growth. We'll see!
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Thanks, Rhonda! I appreciate it.
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person in the world to say that life is good when the tumour is
spreading! Many many purrs that you get the aid you need, that the
appointments don't overlap, and that the Mayo Clinic can stop the tumour
from spreading any more.
kilikini...
polonca12000...
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We are purring and sending lots of best wishes for you to get into
radiology as soon as possible and that it works really well,
Polonca and Soncek
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I just got off the phone with Mayo Clinic. I can only (apparently) consult
with an oncologist, darn it. They want $4500 up front to do anything
treatment-wise. Oh well, knowledge through the consult can be a good thing,
right? Can't hurt. It's paid for.
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Lisa Katt...
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I am happy for you Kili.
Elisabet
kilikini...
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Thank you! I'm on hold with the Mayo Clinic now!
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Victor Martinez...
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Congratulations! We'll keep purring for a complete recovery.
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