“Girl, you look good in those genes”

Have you ever been cleaning your bathroom with a nasty chemical, and then you thought to yourself, “This is probably really bad for my health.  I shouldn’t be touching this- it’s going to give me cancer!”, and then you realized, wait, I already have cancer!  Does that ever happen to you?  So funny.

So today I’m giving a quick lesson on the BRCA genes (BReast, CAncer; pronounced BRAH-kah for short); bear with me!  I recently had genetic testing done to find out if I have a gene mutation that makes me predisposed to breast cancer.  This really has no effect on my treatment, but in the best case scenario I get an explanation to why I may have gotten cancer (despite lacking a family history), and could also inform family members that they should get tested for the mutation.

The science:

(you can skip this part if you just don’t care)

BRCA1 and BRCA2 are tumor suppressing genes that we all have.  Each cell has two copies of each of these genes so in case there is a mutation in one of them, there’s a back up copy.  People who test positive for BRCA1 or BRCA2 start out with only one copy.  One ‘event’ can cause the gene to mutate and lose its functionality.  Without the tumor suppressing genes present, other mutated cells are allowed to divide (sometimes rapidly) which is what we call cancer.  Women who are BRCA1 positive have about a 60% chance of developing cancer before the age of 70.  Women who are BRCA2 positive have approximately a 40% chance.  An average woman with no family history has a 12% chance.  I really hope I’m explaining this right!

I was given the short panel of the four most common mutations (for expediency) and they all turned up negative.  That was not a surprise because I had been tested for these in 2010.  Due to advancements in technology, there was an outside chance that one of them could come up with a different result.  Of these four tests, they all came back negative.  So we kept digging.  They tested me for 30 different, albeit rare, genes.  It takes weeks to get the results back for a large panel like this.  I got the results back this week and……all negative.

What does this mean?  It means that there is no logical explanation as to why a young woman with no family history of breast cancer would be diagnosed with the disease; though, to be fair, I have a family history of just about every other type of cancer.  I’m not bothered by all of this.  I kind of expected that would be the result.  It’s always nice to have an answer to things, but it doesn’t change the facts.  Mostly, I wanted to know if there was anything that could inform my family about their increased risk.  So to that I say, check me out:  In terms of having breast cancer, I’m in first place!

-Lindsay

Bluebird

There’s a bluebird in my heart that
wants to get out
but I’m too tough for him,
I say, stay in there, I’m not going
to let anybody see
you.

there’s a bluebird in my heart that
wants to get out
but I pour whiskey on him and inhale
cigarette smoke
and the whores and the bartenders
and the grocery clerks
never know that
he’s
in there.
there’s a bluebird in my heart that
wants to get out
but I’m too tough for him,
I say,
stay down, do you want to mess
me up?
you want to screw up the
works?
you want to blow my book sales in
Europe?

there’s a bluebird in my heart that
wants to get out
but I’m too clever, I only let him out
at night sometimes
when everybody’s asleep.
I say, I know that you’re there,
so don’t be
sad.
then I put him back,
but he’s singing a little
in there, I haven’t quite let him
die
and we sleep together like
that
with our
secret pact
and it’s nice enough to
make a man
weep, but I don’t
weep, do you?”

-Charles Bukowski

Emotions are really hard for me.  I have them just like everybody else, but I don’t understand them.  Sometimes I don’t express them at all.  I have no idea when I started thinking of emotions as a weakness but I have gotten so good at suppressing them that I don’t even recognize when I’m experiencing some of the more common ones.  This is what lies at the heart of depression and anxiety.  This is why this poem makes me cry.  Because it hits a little too close to home.

Cry baby.  Psycho.  Hot head.  Bitch.  Mope.  That is just a short list, but think about all the words we have in the English language to alienate someone who is feeling fear, sadness and anger.  I have conditioned myself to suppress the ‘bad’ feelings and present only the ‘good’ ones.  I am only what I want you to see.

All of this gets compounded when you factor in the cancer diagnosis (and I’m not even talking about the current one).  When I went through treatment the first time (2010), I didn’t let myself experience any of it.  I didn’t ask for help.  I even thought that I could get treatment without telling anyone (including my family) that I had cancer.  Because I thought I was tough.  No 21 year old is tough.  I was too scared to deal with the weight of what was happening to me.  So I pushed it all down and I tried to move on but, unless you can reconcile those emotions, they never go away.  And the hurt is just under the surface.  It didn’t take long in my therapy sessions to uncover all of the raw feelings and the tears.  It’s frustrating that I can’t just fast forward through it, but instead I am forced to unpack each memory and really try to understand it.

That’s the secret to therapy.  If you can get to the point where you understand what your gut is telling you and can make adjustments in your life, accordingly- well then you just won therapy, my friend.  When you think about how much has happened to me (to us) in the last three months, it’s absolutely astonishing that I haven’t fallen apart or gone off the deep end.  I have lost so much: my health, my ability to have children, some of my freedom… Eventually I will lose my hair from chemo and my body will start to work against me…Eventually I will lose my life.  This is what I think about during the course of one day.  What is my legacy going to be?  What do I want to do with my time, now that I am acutely aware that it’s finite?

This blog has been a great place to express myself and it is continuously evolving.  Moving forward- I am my own target audience.  I want this to be a resource for others that are coping with metastatic breast cancer.  That is what I thought I was doing when I started the blog, but it has turned into a way for me to provide comfort to people from afar.  I will do a better job of writing about reality, no matter how ugly.  I owe it to the women out there who are feeling alone and scared.  You are not alone.  There are too, too many of us.  We just suffer in silence sometimes.  So let’s break the silence.

-Lindsay