Why Hello There, Reality!

Posted on

Today was such a Monday. Such a Monday after a holiday. Such a Monday after a week of vacation. And even more so, the last real break before the big day. And an amazing, wonderful, went-too-fast family vacation at that. All the sudden July is here (so here!) and things are real.

Real like talking with my parents on the plane last night about the details and logistics of when they’ll pick me up, where I’ll leave my car. Real like getting an email that my application for FMLA was approved (for 6 weeks… Fingers crossed I only need half of that!) Real like working with my amazing friends to plan my Boob Voyage Party. Just… Real.

And I’m not the only one! The text I got in response from one of my oldest and closest friends about the party: “Omg I literally just started crying a little bit. Definitely not the reaction I expected, just reading it made it so stinking real!!!!”

Trying to think so far in advance with work and have everything together is quite the task. The reality is there’s this week and next week… The following involves 4 trips to doctors in one week. The following a big work conference (that I’m super stoked for… Couldn’t ask for a better immediately before distraction!) then a day to party and a day for pre-op. Like whoa. Will redefine “fly by!”

Anyhow, reality? It’s here. I get asked daily how I feel about everything and I have no reservations in my answer that at this point, I’m so ready for it to be over. To cross “to the other side” as fellow previvors say.

So some work craziness awaits, then a slew of doctors, then some good distraction, and then a party that promises to be memorable and amazing if I know anything about the hosts! (I mean, there are gonna be boobcakes! And no, not a joke…) I am so grateful for my incredible family and friends… They never cease to amaze me. I am so very grateful for each and every one of them. So if you are one of them and not on fancy Facebook, I want you to know you are invited to join the celebration – text me for details!

Oh and THEN… There’s that surgery thing. And then a Gilmore Girls, Friends, and Breaking Bad marathon. Oh and famous enchiladas. Can’t forget those! :)

As always, glad to have you along for the ride… Here we gooooo!!!

BRCA Politics – My $.02

Posted on

Let me preface this by saying I realize how delayed this post is… especially given what a landmark month June was for medical genetics, and BRCA mutations in particular.  But hey, better late than never right?  I have finally surfaced after a few weeks of work madness and lovely R&R!

So when I was tested for a BRCA mutation back in 2008, I certainly didn’t know the political aspects of genetic testing, or many of the other implications as well, such as genetic discrimination.  Would it have made a difference in my wanting to get tested?  Probably not.  But it is all very fascinating to me.  Most of which I knew was from watching the documentary “In the Family,” a film about a young, single BRCA positive woman who considers her options, that came out that same year.  At one part in the movie she goes to the headquarters of Myriad Genetics, who at the time (and up until June) was the only company that could test for BRCA mutations.  It’s an interesting story how BRCA testing came to be… basically a race around the country to who could identify the genes first, and then when the researchers found it, due to no legal precedent, Myriad was actually allowed to patent the gene, meaning no other companies could offer BRCA testing.  I don’t pretend to be an expert on any of this, but it was always rather fascinating to me that a company could patent a gene… that’s MY messed up DNA!  How can you patent something that makes up the very nature of living things? Seemed crazy, and needless to say, there were many vocal people that felt the same way, and last month after a very and involved case, the Supreme Court agreed: You cannot patent naturally occurring DNA.

I am relieved with this ruling for the main reason that hopefully now BRCA testing (and all other genetic tests) will become a competitive market.  I, unlike others, have no personal issues with Myriad – this is a whole new world of medical genetics we are embarking on, and there are bound to be issues we have to work through.  I am grateful that I was able to be tested when I was.  However, there are many women out there that do not have such easy access, or may have financial issues that prevent them from being tested.  I am hoping that now that other companies will be allowed to offer the test, testing will be more accessible and perhaps less expensive  Especially now that BRCA mutations are really in the limelight with Angelina Jolie, it’s an exciting time for awareness, and I can only hope that every woman that needs/wants to be tested will be able to.  I will be very interested to see how this all plays out, even though I’m far past that part in my own personal journey.  I consider it a stepping stone in the advancement of medical genetics, and am glad we are moving on to the next stage.

On a related note, while I’m on the political/legal tangent, as well as things that seem obvious… interestingly, 2008, when I was tested, was also a big year for medical genetics with the passing of GINA.  I am SO incredibly grateful for this law that prevents genetic discrimination… from employers, from insurance companies, from so many places… I can’t be denied treatment or coverage because of my genes.  That seems to simple… not to hold things against people that they can’t change, but I suppose that defines everything that is wrong for every kind of discrimination.  Everything involved with medical genetics is still in such baby stages, but I am so glad that this part has already been addressed – I can’t imagine having to fight all that goes along with that while preparing for surgery as well.  It is a similar relief like the Women’s Health and Cancer Rights Act from ten years prior, which requires insurance to cover breast reconstruction after mastectomy.  So much of this seems so straightforward and logical, but I’m glad there are laws to back things up in this crazy world of ours!

Anyhow, that’s my short commentary on all the legal stuff.  I’m not a die-hard follower, but I did follow fairly closely and was relieved with the decision… like I said before, it just seemed so obvious. And I know it’s a big relief for the BRCA community as a whole; there’s enough other battles to fight!

In other news… it’s July 6.  How did that happen?!  Pre-op in 2 weeks already… surgery in exactly a month!  More on that later… and Happy (belated) 4th of July!