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.

More Thoughts on BRCA

When the doctor I recently went to mentioned
the BRCA tests, she made it sound like what
was being "offered" was a "fix." She made it
sound as simple as going out to the store to
pick up something. She even touted firm
breasts as a result of surgery.

While firm breasts sound lovely, it is sort of
like my hair. Yes I have some decent wigs, but
I would much rather have my own hair.

I was asked by one of my sisters if I was dead set
against the idea/surgery. I told her at this time, I
am not interested. I also said that there were
things I was not willing to do before, that I
wound up changing my mind on. So who knows
if I will think otherwise about this issue at some
point.

My sister essentially said she was more
"attached" to being here for her kids than
she is to her breasts. So...if it was her
choice/decision to make, she would have
the surgery.

A part of me is not particularly happy about
anyone knowing what is up. I feel like people
who know will make judgments and
assessments that do not help me, or potentially
our relationship.

I could potentially see someone not getting the
test, but winding up with cancer only to have
those who knew what was going on having an
"I told you so" or "it's your own fault" type of
attitude.

So...here is the thing. I did a bit of research.
If you know me, I prefer not to know too much.
I really don't like to fill my head with the types
of things that only wind up scaring me.

First off, even if I have the gene, it does not
mean a sister does. So even if I found out that
I had it, it would not necessarily be of any
benefit to anyone else.

Secondly, someone who has the gene, also
apparently runs the risk of other cancers, as
well, but you don't see people running to remove
those other body parts.

Thirdly, and quite interestingly, just because
you remove your breasts does not mean you
will not get breast cancer. Apparently surgery
removes a lot, but there is a chance, and
likelihood, that not every cell that could have
the potential of breast cancer will be removed.

Fourth, it seems that estrogen is a major player
when it comes to breast cancer. Apparently
the longer a woman is exposed to it, the more
likely is cancer. Having one's ovaries
removed is actually quite helpful in reducing
one's risk. Well...I no longer have ovaries.

It seems to me that there is a significant case
for my non reactionary interest in finding out
if I have the gene. Even if I found out, I do not
believe it would change a thing.

In addition, for the next two years I am going
to be watched closely with visits every 3 months.
If anything was to show up, I would likely know
pretty early. After the two years, we will see
what happens.

In the meantime, the thing I know, and am
crystal clear about, is that I need to keep doing
things to take care of myself. I need to continue
to sort through things. I need to keep exploring
and growing and learning.

And, even though it likely held true before, it
is very clear now, that I need to do all these
things like my life depended on it...because
it quite possibly does.