I have a gene mutation...sooo I'm like an Xmen right??

Let's talk about what this BRCA 1 vs BRCA 2 mutation means. 

Here's a link to the NIH explanation of these gene mutations: http://www.ncbi.nlm.nih.gov/books/NBK1247/

Those peeps are A LOT smarter than me...you should definitely take their word on it. 

But basically my take home message I got was that the BRCA gene suppresses tumors and cancer. There are two of these genes (very creatively named...1...and...wait for it....ya you got it....2. Thank you science for massively enhancing our creative spirit making it easy on us). I am positive for the BRCA 1 mutation. This mutation puts me at an very high risk (given this mutation+my strong family history of BC) of developing BC. I am also at an increased risk of ovarian cancer (for which surgical intervention is recommended later in life...like 40's...and I have no family history of ovarian cancer as far as I know so this is pretty low on the totem pole right now...whew). 

As I understand it the BRCA 2 mutation is more associated with alternate types of cancers and would be something bigger to worry about if I was a dude and at risk for prostate cancer. Once more reason to be thankful for that XX baby. Unfortunately, to my knowledge at least, the only super power it will endow on me is age defying "perkiness" for years to come. Thank you science. 

So basically I'm doing the regular recommended course of treatment for BRCA 1 positive peoples who have a family history of BC. I'm a good rule follower. You're welcome MD Anderson. Does that mean I get to go to that school for gifted olders youngsters now?? I'm sure I have something super cool I can do... does stalking the J Crew sale site for the absolute best discount or pinterest proficiency or supporting Baylor football YEARS before RGIII came along count as a super power? Methinks...yes. 

Speaking of MD Anderson Cancer Center... This is where I am having all my treatment/surgery/follow up. People - listen up (and I am not being paid to say this). They are the #1 cancer center for a reason. I live in Houston (have for nearly all my life) and have worked and/or had patient experiences in nearly every hospital system in the Texas Medical Center. And while I think the hospital I currently work for is awesome (but is not a cancer center of any kind) and have had good experiences throughout alternate hospital systems (what's up Memorial Hermann, Methodist, and St. Lukes) - MDACC has blown.me.away. My patient experience there has been really amazing. My care team communicates (!!) with each other, my appointments are grouped together usually on the same day so I don't have to come back on multiple days (and are usually on time) and my physicians and their support staff legitimately take their time with me and have always answered all my questions.  They have treating patients there down to a well oiled organized cogwheel science and it has been awesome. I only hope that my experience through my surgery and reconstruction continues to live up to the standard they have shown me through my surgery prep (which I fully expect they will). This is not to say that any other hospital system is bad at.all. - like I said I have had good experiences at other systems for various things - but I just had to give a shout out to MDACC. Way to go guys. 

It also doesn't hurt that they gift shop is AWESOME SAUCE and there's a freaking CHICK FIL A in the cafeteria. Boom. Watch out you glistening nuggets of glory - I'm coming for you after my 24 hours of nothing-by-mouth bullshtick. 

So there you go...a lot little bit of info about this in a nutshell. Hope you enjoy (or at least consider me super now!)

On the Ironman Front...

I got back in the pool today for the first time in over a year. 

I started out so strong

Things started to get a little...ummm...shall we say wonky around the 500 meter mark

But you shoulda seen my flip turn ya'll...

It's gonna be a looooonnnngggg training year people. 

The End.

I DON'T KNOW: how to even explain genetic testing...but I'm going to do it anyways

Let's start at the very beginning...

My maternal grandmother died very young from breast cancer  (diagnosed at 39, died at 42). We have a strong history of breast cancer (going to write this at BC going forward) in my family and my mom and aunt also had preventative bilateral  mastectomies (also now known as PBM's) and hysterectomies at a relatively young age.  

About a year and a half ago, I had my gall bladder removed. While you might be thinking.."Hannah - you're ALREADY off topic...come on now!" - I promise this ties in. My surgeon (Dr. Elegy Etter) for that procedure also happens to spend a lot of his time treating women with high risk of breast cancer (who knew). He reviewed my family history and asked me if I had ever been tested for the BRCA gene. I said "no" and he said "I think  it would be a good idea for you to just go talk to someone in the genetic counseling center"...I said "ok...I'll think about it"

Fast forward to this past January and I finally got the cohones time to make that call. I hadn't really decided if I really wanted to know before then but eventually I came to the conclusion and I would rather know and have the option of doing something about it then be positive, not have the info and then possibly/probably have to treat cancer on top of it all (I hate feeling unprepared...or stupid...and if that happened I think I would feel both).

So I went and traversed the campus-the-size-of-the-deathstar  to the MD Anderson Cancer Center one Tuesday morning (if you want more info: http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/prevention-and-screening/genetic-testing-and-counseling/index.html ) . I met with a wonderful breast surgeon named Dr. Arun then saw a very nice genetic counselor named Jessica Profato. She explained to me that the BRCA mutation (despite all its popularity) actually only occurs in like 0.3% of the population and that it was HIGHLY unlikely that I was positive even if my grandmother was. You see if my grandmother's breast cancer was due to the BRCA gene then she only had a 50% chance of passing it down to my mom. If that happened, and my mom was positive - then she only had a 50% chance then to pass it on to me. So in my (admittedly very bad at math) brain - I only had a 25% of .3% (you figure out what that number is - "Ideas in Mathematics" was my only college math course...for reals) chance of being positive. However, because my mom and aunt had already done all the preventative stuff that is out there and my grandmother had died, I was pretty much the next in line to test. At first she wasn't going to test me but thankfully my insurance covers this kind of testing so we went ahead with it and got one little tube of blood and off I went on my merry way. She said I would hear from her in a week or two. 

So I waited...and waited....and I'm not a very patient person with these kinds of things....

And she called me -during my lunch break one Friday (right during the middle of trying to eat my freakin' snack pack! totally ruined it!)

I was positive for the BRCA 1 mutation (there are 2...we'll talk about this another time).  I don't know if I'll ever get over how amazing it is that they can take one little tube of your blood and tell you SO much about your health and what could happen. Medicine is amazing. She admitted she was very very surprised that I was and I tried to explain to her that I am clearly a high achieving medical champion and if I'm going to win any kind of lottery - this was going to be it - never she fear. Genetic lottery draft 2014 here.I.come.  She didn't find me as comical I don't think...pity...

She explained to me some options available to me and that I would need to come back in to discuss what my positive test meant. So I made my appointment and started my journey to fake boob town (will now call them foobs). The rest is history in the next few posts! Stay tuned!

If you're keeping track - new abbrev's to know are now up to 3 - BC, PBM and foobs. Keep up.  

I don't really know: how to set internet ground rules...but I'm gonna do it anyways

This is the internet right? Where whatever, whenever goes right? 

So can we set some ground rules? Can my posts get shorter as this goes on? (I hope so/that's my plan - but this one's not...still hang with me k?)

A few things that I thought about when thinking about starting this blog journey:

1. Some things you should know about me:

• I am 29 turning 30 this next year.
• I am married to an awesome, supportive husband who loves me    more than I deserve and is so SO supportive of this decision (both boobs and a year of REALLY long bike rides)
• We have no kids and that's not on the horizon in the immediate future
• I am very sarcastic
• I like to create abbreviations...abbrevs...get used to it
• I get super passionate and excited about whatever I am committed to. One of my best friends likes to call this my "fiercely loyal" side. But once I'm committed - I'm in. 110% baby. Get ready. 
• I am a talker. I talk for a living. I am wordy. Despite this - putting this experience totally out there for the world to read is pretty out of my comfort zone. But if you never put yourself out of your comfort zone - what are you doing with your life? AMIRIGHT?

2. I want this to be an authentic, vulnerable record of this experience. Because of this:

• Yes, we are going to kind of touchy feely at times...a lot of emotion, thought and prayer went into this decision (mostly boobs but also bike rides I suppose). If that freaks you out - check back in with me in November. We will talking much more about bike rides than boobs by that point ...k?

• If you are reading this and are going through this journey - I am an open book. Feel free to leave a comment and if I can help or answer any question with my personal experience I will. 
• Because I want this to be a resource to others going through this experience (again, mostly boobs, but also rookie, I'm-not-exactly-naturally-athletic-but-will-do-the-ironman-anyways too I suppose) - we will discuss some pretty intimate details of the process, my experience, my reconstruction and recovery.

    ** THIS IS NOT MEANT TO FREAK ANYONE OUT** 

    ** THIS IS NOT MEANT TO BE SEXUAL IN ANY WAY SHAPE OR FORM**

    

• This is so someone might be able to read this and may take some comfort or information away from it. By nature of this process - things that I normally wouldn't talk to total strangers(or even people that are not the closest to me for that matter) is out there for the world. I'm ok with that. 
• (sidenote: If you are a member of my family or friend - particularly one of the menfolk - please don't take this as me trying to give you a mental picture of my fake boobies or make this a conversation piece for our Thanksgiving table...and if you are...that's weird...we are just going to stop that conversation right.now. kthanks

3. **WARNING: BIT OF A SOAPBOX FOLLOWS** No I am not going to breastfeed if ever/whenever we have kids. So- if you are headed to your la leche league meeting just now and about to leave me a nastygram about that - please read below and just be nice (bc believe it or not I have already gotten some VERY unwanted comments and "advice" in this arena from lots of people...and while I know it was all well intended it's just not necessary). I am going to address this very shortly and probably not talk about it ever again so here'goes:

• #1 - I have no children, I have no imaginary children, and I am not emotionally tied to the future possible breastfeeding of my future imaginary children at.all. 
• I am a speech pathologist - I work in the NICU with preterm and ill infants. I work with babies and bottle feeding mommies and breast feeding mommies every.single.day. That being said, I am LITERALLY a licensed, professional bottle feeder.
• I support breastfeeding - all you mommies that pump, and feed and provide for your baby this way - I applaud you. If you are my patient and this is your goal - I will do everything in my power to help that be a successful goal for you and your baby. You go girl (fo'reals - BF'ing is NO.JOKE. and if you make it happen - you get mad props from me)
• BF'ing is not for everyone. This is it's own long story multi-volume highly controversial novella post. And honestly - I am QUITE relieved to not have to nurse my imaginary future children should that ever happen. That is me...my story...my preference...and I think that's ok. 
• Can we all just agree to support one another and pat all those mommies on the back for just being awesome mommies - no matter how those kids get fed? CanIGetAnAmen?

               Totally Gretch...being nice is so fetch.

      Stay tuned...next post starts the journey to new boobtown!

A new beginning and new adventures...

I don't really know how...but I'm going to go for it anyways...

This first one's a long one - hang with me. 

So for pretty much always I have thought - why start a blog? I am NOT a big enough deal for people to read my thoughts all the time. I still think that. 

HOWEVER...in January 2014, a year and a half after getting my original referral, I was tested for the BRCA gene at the MD Anderson Cancer Center (they have a whole center for genetic counseling). This is the gene linked with high incidence of hereditary breast (and ovarian) cancer. And I tested positive. To be clear - I DO NOT have cancer (thank you Lord) but testing positive for this genetic mutation gives me an 87% (so in my head might as well be 100%) chance of developing breast cancer. The recommendation for women with this genetic mutation is to either begin having regular mammograms or breast MRI's every 6 months until cancer shows up then treat it OR undergo a preventative bilateral mastectomy. I chose the latter. 

So July 15 I'll be heading into the lovely MD Anderson breast surgery center and undergoing a 2 stage preventative bilateral mastectomy. Along my preparation journey for this - I decided to do a little googling because I wanted to know about someone else's experience with this journey. Just a regular person - optimistically a younger someone who might have a story like me. Anybody want to guess how many recent journal, blogs or stories I found that were about and  written by just a regular person? ONE. 1. UNO. Yep - just one from 2011. The techniques and outcomes change a ton over time and no offense to Marie Claire, People magazine or queen of the free world Madame Jolie-Pitt but I wasn't really interested in reading about her experience with her fancy shmancy rodeo drive just-like-the-rest-of-us course. 

I just wanted a regular person's perspective. And I found...one. 

Thanks Ang.

Along with all this I am doing the IRONMAN. Yep...the whole thing...the entire enchilada...May 16, 2015. 2.4 mile swim, 112 mile bike ride and a full dang marathon. 

Yep - Lotsa life changes going on in our house this year. 

So...are there bigger and better and more important and bigger deals out there in the world...ABSO-FREAKIN-LUTELY. I am not out here to get attention or to be a drag or to make myself out to be any kind of big deal. But - if my journey can give someone else going through this process a little light on my experience or be some kind of resource to them - then it's totally worth it.  

On the other note...the Ironman is a big freaking deal. It's been a goal of mine for a long long time. Total bucket list item. I am totally terrified psyched for this experience. Aaaand I figured if I  can journal about it here then that's at least one more reason I will get.off.my.butt. and train.

inspiration everywhere people...

So there's going to be bike rides. There's going to be some new boobs. And as for the title...I think this might be my theme for this little dumpsite of my thoughts. Because in life...truly...I don't really know how...but I'm going to go for it anyways. 

So join me peeps. Should be a good ride!