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Monday, January 28, 2013

The Thought Swirls

So today I have a lot swirling through my head.

I feel very much like the "cat" I am.

Ever notice how a cat can be occupied intensely
with one thing, only to suddenly stop and do
something else, and then go on to the next thing
ultimately plopping down for a nap?

Well, that is pretty much me today -
minus a much wanted nap.

I have been thinking about the genetic testing.

Why?

I really did not want to.  But the fact that my
feelings had shifted in relation to my sister I
started to think if it was that helpful to her, and
that important to her, maybe I should do it.

Apparently her gynecologist is "pissed" at me
for not doing the testing.  I don't quite understand
why.  If I was to have the BRCA gene, it does
not mean my sister will, and the absence of it
does not mean she won't have it.

I really don't see how it matters what my situation is
when it comes to what my sister chooses or doesn't
choose.

Part of it seems to hinge on a life insurance policy.
According to my sister, she would not be able to
get the kind of life insurance she wants, if she has
the gene.

Is that "true"?  I don't know.  But if it is, that so
sucks.   That would not seem right to me, at all.
I would have to think she knows what she is
talking about, but not having done research on it
myself, I have no way to know.

And then she tried to tell me that I was somehow
affecting my nieces by not getting tested.  Once
again, I don't see the correlation.  However in my
sister's mind whether or not she gets tested would
hinge on my results.  If she doesn't get tested, then
her daughters would not know if they could have
it - or not.

I am not sure how it makes me responsible.  But in
my sister's mind, I am.  And there is a part of her
that is pissed that I won't get the test.

On my side of things, I really don't want to know.
If I get tested, I am not sure there will ever be a way
for me not to know the results.  In addition, I wonder
in the back of my mind if there could be any insurance
company bias if I wound up having the gene.  Is there
some way it could come back and affect me in a way
I would not want to be affected?

I also wonder if the test would be paid for.  I suspect
it might be, as an insurance company would prefer
that one get a mastectomy rather than wind up with
cancer.  Find out you have the gene, get the mastectomy,
and hopefully save the insurance company a bunch of
money.

Now some would say that they would be all for having
their breasts removed.  There are many stories of that
in the news - even a recent pageant contestant.

I really am uninterested in ever having cancer again.
However having the gene doesn't mean I will, and
not having the gene doesn't mean I won't.  Having a
mastectomy doesn't guarantee anything, either.
You can have your breasts removed, and still wind
up with breast cancer.

So...

I really don't know what I will do.  I probably should
have kept my mouth shut with my sister until I decided
if I was going to do it.  I just didn't realize how much
the whole thing pisses her off.

(You can also read my previous blog on BRCA)

PS Update/Revisting post.  January 29, 2013

So apparently there were things I wrote that have been
taken differently than intended above.  For that reason,
I want to clarify a few things.

First of all, my sister did not ask me to take the test.
When the subject was first broached she said something,
but then left it alone.  Apparently it is something that is
important to her, but she respected my desire not to do
it.  However, in ways that I don't know that we will ever
see eye-to-eye on it is something that is very important
to her to know.  And she isn't happy about my perspective
and how I feel about it.  And,given her perspective, she
has every right to feel that way.

Secondly, it seems to some people that the way I questioned
the life insurance policy thing was me questioning what my
sister said.  That was not the case at all.  I was just stating
that I had no first hand knowledge of what she said to me.
(I am going to see what I can find.  If there is something
that would be helpful to others, I will come back and
post it.  In the meantime, let me be clear, I DO believe
what my sister said, I just - at the time of the initial writing -
and now - have no first hand knowledge of what she knows.)

In addition, it seems she may now have to pay more medical
insurance because a sibling has been diagnosed with cancer.
That so doesn't seem right to me, either.  Why should she
be penalized for someone else's health when she may never
have an issue of her own?

I have no idea what "Obamacare" is going to be offering,
as I could never find any details online.  But I hope it is
something saner than the direction it seems we are going in.

Third, I respect my sister's choice to do or not do whatever
she chooses in relation to the situation she now finds herself
in.  I was in no way judging her or her choices or in any
way implying that she should do anything.  As with all things
I write it was a conversation and there were things I was
thinking and questioning.  If I was in her shoes I wouldn't
be very happy either.  I would probably feel pretty pissed, too.

Tests like this are supposed to be helpful to people.  But there
are inconsistent beliefs about them from professional to
professional, and the potential broad reaching implications
that have nothing to do with health and well being of the 
individuals involved are troubling to me in more ways than one.

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