Sorry just can’t help myself with a good “Annie” reference! Musical theater nerd? Well yes I am thankyouverymuch.

Well tomorrow’s the big day and honestly, as asinine as it sounds, at this point I’m actually looking forward to it… the not knowing has outweighed the other thoughts and I feel like I’ve processed everything as much as I can. Time to get things going!

I would be lying if I didn’t admit to being in a bit of a funk today, but meh – multifactorial and I’m over it now. Thankful for a roommate that provides good distraction (mint green Steve Madden flats? Well don’t mind if I do!) and doesn’t question your “my allergies suck today” excuses. I thought I was was doing great till I ran into a friend at Central Market and got a good “are you okay? You just look like you’ve had a really rough day.” In her defense, no makeup and exhaustion will do that! Okay, okay, so being ridiculously out of shape and working out for the first time in a-period-of-time-I’m-too-ashamed-to-admit will result in said exhaustion… but regardless she had excellent advice to think about the end result and I walked away with an affirmative “I promise I’m okay!!” And I am. I really, really am. I’m ready.

Anyhow, I’ll keep this short… will update tomorrow, hopefully as a girl with a PLAN! If you know me in person you know how happy that statement makes me! 🙂 Thanks for all the good thoughts sent my way… you are all amazing!

Well it’s next to impossible to believe that this long-awaited appointment, the “call me when you’re 25” appointment if you will, will be over this time next week.  It seemed so far away, and then when I had to bump it back a couple weeks due to scheduling issues, even farther, and all the sudden it’s like bam! Here.  It’s been good to be able to process everything but I am definitely ready to get this show on the road come Monday.

So I’ve had a lot of people ask me how I got to the point of making a decision so big… prophylactic surgery big… so I thought I’d devote this post to my “stream of thoughts,” because it’s really rather more of a list of random categories and thoughts than a thorough explanation.

To start though, I must first share the quote that has most resonated with me in the last few months, as it succinctly yet eloquently describes my thoughts.  It’s from the book Previvors (Author: Dina Port… I can’t recommend it highly enough… so much so that I’ve kindly forced it upon those closest to me in this journey) from a BRCA positive woman regarding her prophylactic mastectomy:

“I was having skin-sparing surgery, so to me I was just removing cells and getting rid of my risk,” “Everything else remained intact. I viewed it as though my breasts were faulty, and I was getting them fixed. I didn’t think I was giving up anything. I was gaining peace of mind.”

Everything about that statement is just so very true and exactly how I feel.  So with that said, here comes the word vomit of my own…

It’s not “Radical”
It really drives me crazy when I heard this surgery referred to, mainly on the internet, as “radical.”  First of all, I don’t quite get how people can pass judgment on something so personal, but second of all, no one thinks twice about BRCA positive women removing their ovaries to decrease the risk of ovarian cancer, so how is this any different?!  As an ICU nurse I’ve witnessed first hand surgeries you couldn’t deny as “radical,” and let me assure you, this is not one of them.  Especially when you consider that doing it prophylactically allows you to do it with a skin-sparing, nipple-sparing, lymph-node sparing option (which I fully intend to embrace).  Perhaps my explanation of “scooping them out and replacing them” is a bit crude, but really?!  That’s the essence.

The other option: Surveillance
So the whole “call me when you’re 25” line stems from the national guidelines that suggest initiating aggressive screening measures for BRCA positive individuals starting at the age of 25.  Which doesn’t sound so bad, I get that, until you really start considering what that involves.  It means SOME sort of test, whether it be a mammogram, MRI, or ultrasound, every 6 months. SIX months!  Do you know how fast six months flies by??  Knowing myself, I really feel like I would be all-consumed by screening and the accompanying “scanxiety”.  You’re always looking for something wrong and wondering “is this the time they’ll find something?”  The stress of driving out there, having the test, waiting for results… over and over? Nope, thanks, not interested.  Besides the fact that research came out earlier this year advising against mammograms in people my age because the radiation exposure increases cancer risk even more!  Because the irony in that is not incredible right?!  Also there’s the lovely tidbit of info that the screening for ovarian cancer is just not that advanced.  It will be more than plenty to have every 6 month ultrasounds looking for ovarian cancer without all the breast cancer screening.  I’m already not thrilled about that but as it’s the only option at this point for me (kind of want those kid things you know?), I’ve come to accept that.  But add breast screening onto that?!  No thank you!

I can certainly see how some people are okay with the surveillance option, but I know me, and I’m just not one of them.  Hearing the horror stories of people who did everything exactly as they were told and then STILL finding out they have relatively advanced cancer is overwhelming.  I am much more of the “let’s get this over and done with… I’ve got my life to live!” mentality.

Another facet to this is the “okay they found something” scenario, which is not at all unlikely given the fact that young women often have dense breast tissue.  Okay so there’s something suspicious on whatever test that’s done… that leads to more tests, which more than likely leads to a biopsy.  Sure it could easily come back benign, but how many times does this happen until you say “enough is enough?”  I won’t lie and say that the cosmetic result of this surgery is not important to me, because it is (it REALLY is) as I’m sure it would be to every 25 year old.  I am not willing to risk my cosmetic result by having biopsy after biopsy… I want to give it the best chance possible to look as normal as possible, and do it all at once before anything happens.

And while we’re at it… this is not just ME affected every 6 months.  Obviously I’m the one doing the actual testing, but to think of putting my poor family and friends through that stress as well?!  Both the “is this the time she has a tumor?” fears and the dealing with MY stress… well there’s wine and girls nights for the latter but… (just kidding!)  Seriously it’s horrible to even think about that… I owe it to myself and to everyone around me to do everything I can to not fall into that 87% statistic.

Edited to add this powerful link: while not entirely applicable to me, this woman describes the surveillance process, and all the stress that goes into it, so incredibly well – I figure another perspective helps explain why surveillance is not for me.

Timing
I’ve had some people ask “why now?” which is a totally valid question… many people could see doing this is in 10, even 20 years, and for whatever reason some think its different then.  Well, for me, I can’t think of a better time.  I’m young, relatively healthy, and in a place where I will be able to have time to recover while surrounded by an incredible support system.  And really, when is going to be a BETTER time than right now, single but with so much support?  So I find the man of my dreams and want to get married… nope, not gonna happen then.  And of course then we want to have kids.  Nope, not gonna happen then.  And then the kids are young… I don’t want to miss out on their lives, and I certainly don’t want this impacting more people than it already is! I can be selfish in my recovery and make sure I’m doing this for ME by doing it now.  I will touch on the note of breastfeeding here, as that is the one big thing this surgery affects.  Obviously without breast tissue breastfeeding can’t happen, and honestly that was not an easy thought to accept, as I’ve always pictured myself in the mom role eventually and it seemed to naturally tie into that.  However, I am willing to give up that experience in order to increase my chances of being able to be there for my kids for a VERY long time.  Yes, I imagine it will be beyond difficult once the time comes, but really if that’s the hugest negative to this surgery (and really it is), then I’m okay with it.

On another timing note, I can’t imagine having to make such a huge decision right after being diagnosed with breast cancer… now I have time to think everything through and know I’m making the right decision without the imminent threat of cancer spreading.  I would MUCH rather have this surgery when I am in the best health possible instead of after chemo, etc.  Also, I want to have it on MY time table – when I can plan to be off work, when I can have all my ducks in a row, when I can tell people “here’s the date.”  I would hate to be rushed trying to get ready for something like this, and with my luck I’m sure it would be at the most inopportune time.

Medical Advances… And Fate/Karma/Luck/Whatever you choose to call it
While this gene mutation is no walk in the park, I am so very grateful that medicine is advanced enough to have identified the gene, and I am so glad I know I have it so I can do something about it.  What can I say? I’m a “do-er.”  There are so many horrible diseases out there that you can’t do a single thing about.  If I am lucky enough to find out I have this high risk, I feel like that’s my chance (and while it’s a strong word, obligation) to do something about it.  And call me crazy, but I feel like if I have the option and I don’t take it, I’m really just asking for something to happen.  And I say this entirely un-dramatically, despite how it sounds, but if you know me and my family, we have generally not-awesome luck.  The saying “if something can happen, it will” has followed me all of my life.  This is not to say I think I WILL get cancer at some point in my life, but to say that damnit I’m going to do everything in my power to make sure I DON’T.

The case of Femininity
I guess this blog can’t be complete without touching on the old “but breasts define you as a woman” adage… but I’ll keep it short.  I’ve never really quite understood the concept of a body part defining one’s femininity but I digress.  I don’t know how to put this eloquently exactly, but it’s really difficult to describe how your mentality changes when you feel like your own body could betray you.  No body part could ever define who I am as a person, and I really don’t feel like I’m losing any part of me, or that I will be any less of a woman.  End of story.

Reconstruction Options… Like WHOA
Adding to my “scooping them out” explanation and the quote above… with the ability to do skin and nipple-sparing surgery, yes there are incisions and what have you, but really I don’t feel like I’m going to come out feeling like I’ve lost anything.  Will it be weird? Yes. Will it take getting used to? Of course.  But I fully believe that the empowerment and relief it will bring will make it all worth it.  And let me tell you… in the Previvors book they talk about when they first saw another woman’s reconstruction firsthand and how much it helps.  I can’t reiterate the truth in this… let’s just say there’s some seriously real feeling implants out there!  But I’ll save that fun for another day… the reconstruction options are actually my biggest questions going into this appointment.

That seems like an appropriate place to stop… kudos if you made it this far, but in all honestly I am so glad to have this all written out once and for all for ME after explaining it so many different ways.  And I imagine there will be a day or two in the future during the inevitable “freakout” moments where I will need my own explanations!

More to come soon–

Wow! Hard to believe it’s been a week since I’ve made this thing public… and to be totally honest, it’s taken me this long to process the massive outpouring of support I’ve received. Like WOW I knew you were all amazing, but to see it written in your comments, to watch the blog hits rise, and to feel the love as so many of you reached out to me literally left me speechless. As you can imagine it wasn’t easy, but I definitely feel like I made the right decision to start this blog and am so glad to have so many wonderful people behind me.

So this time in two weeks I imagine I’ll be a lovely bundle of nerves awaiting the big breast surgeon appointment, but for now I shall enjoy my bliss… I just got back from a wonderful weekend getaway to Fredericksburg (down in the Hill Country for you non-Texans!) with one of my best friends. A nice long drive allowed for much talking about many topics, but “the new boobs” for sure – having fellow “medical” friends who see things from a similar perspective is something I will never take for granted! We traveled down Wine Road 290 and gathered some lovely drinkable souvenirs along the way. It was perfectly relaxing and downright fun – a fabulous way to end the birthday festivities!

I figured until I have actual “news” to report, I’d start with some basics… and what better to start with than the title of my blog. So what exactly IS a previvor anyway? I think it’s a pretty nifty term with a cool story. From the FORCE website…

“Cancer previvors” are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The cancer previvor term evolved from a challenge on the FORCE main message board by Jordan, a website regular, who posted, “I need a label!” As a result, the term cancer previvor was chosen to identify those living with risk. The term specifically applies to the portion of our community which has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.

The medical community uses the term “unaffected carrier” to describe those who have not had cancer but have a BRCA or other cancer-predisposing mutation. The term applies from a medical perspective, but doesn’t capture the experience of those who face an increased risk for cancer and the need to make medical management decisions. Although cancer previvors face some of the same fears as cancer survivors, undergoing similar tests and confronting similar medical management issues, they face a unique set of emotional, medical, and privacy concerns.”

I just love that… “I need a label!” It’s so true. No I haven’t had cancer, and no I don’t want to take away anything from those that have – they are their own particular breed with their own stories that deserve so much respect. But I DO have something that deserves recognition, both from those in the medical field and those not, and previvor is certainly way more fun than “unaffected carrier” if I do say so myself! So that’s my “label,” per se, going into all of this – not to be defined by it, but to help redefine it myself… by “Previving and Thriving.” It’s amazing how it’s become commonplace – anyone who knows anything about BRCA mutations seems to know the term! It takes the mystery out of “well… I never had cancer… but… I’m not at ‘normal’ risk either…”

Anyhow, certainly not my most exciting post ever, but one that deserves writing anyway! Up next… the most common question I’ve been asked… how did I come to this decision of prophylactic surgery versus other options. Stay tuned – and have a fabulous week!

Well, what can I say, meeting Amy today was everything I could have ever imagined and more. She’d told me she had a big surprise for me, and boy was she right – I not only got to meet Amy, but the incredible Eryn as well. A fellow BRCA2+ 25 year old that just had her mastectomy and is mid-reconstruction. So we had the three major stages represented – pre-op, in the middle of it, and post op – how cool is that?! I can only hope that every person facing these decisions has an opportunity like this.

Being around these two ladies that truly “get it” was nothing short of inspiring and empowering. They reiterated all the thoughts that I have had about how can you just sit around not doing anything, and fighting for yourself. They are incredible examples of strength and courage, and I am so grateful for these new friendships and am so excited about the future for us all.

Well, I had a totally unexpected little cry fest the night of my birthday. Appears that reality is, in fact, a bitch. Totally out of nowhere, though I have been repeatedly told it was entirely normal. And it’s true, I had that date in the back of my mind for the past 5 years, how could it possibly pass without a little bit of acknowledgement with a good old-fashioned ugly cry?

Thankfully my funk was mostly short-lived. Yesterday was for processing. Today was for beginning to tell people that will be affected by the many upcoming appointments and then the surgery itself. It’s hard to dump the fact that not only do I have this crazy risk factor, but that then I’m doing something pretty darn big about it (and relatively soon) in one conversation. But that’s exactly what I did.

Of course it goes without saying that my parents already know the plan, I had a very honest conversation with my Aunt herself over the holidays about my thoughts and options, and that my closest friends (of which I am so grateful to have many) have been part of my processing thus far and therefore already know, so today wasn’t a huge, huge milestone in that regard, but it did require me to face the truth and acknowledge the future to the people I spend a large amount of time with.

They all took it incredibly well: my closest team members, my boss, and residents I am grateful to call my friends. I hinted to many that I would be journaling my way through this, so the public reveal of this blog is imminent…. though it appears some people have happened upon it already! Just a few more people that I want to explain it all to in person, then I’m ready for the debut!

I have to say, there are a lot of exciting things coming up in my life over the next few months, but right now I am so focused on one day before the big February 18th: Sunday. While I have been thinking and researching the prophylactic bilateral mastectomy (PBM for short… that will be used a lot) since October, through a crazy twist of fate I happened upon Amy just this week, and she is being so gracious to meet with me and share her story. Perhaps it’s a bit presumptuous, but I am so beyond excited to have this friend and support in my life… someone who truly “gets it.” Also she unknowingly inspired me to actually start a blog – I had certainly toyed with the idea, but her fabulous PREvivor GENEration gave me the push to get it going, and I know one day I will be grateful to have this journey written down.

So now there’s no turning back to the “carefree” life of 24, and after a good 48 hours with a whole bunch of hugs and new supporters, I can really say I’m ready to conquer 25!!