So the other night my sister and I went to see Breaking Dawn at 12:15am- opening night.  That’s right, we are 40 and 44 respectively, and we are not immune to the powers of Edward Cullen- he’s a hot, basically underage vampire who sulks.  What could be better?  But I digress- we can talk Edward later- we were there with a couple of friends, one of whom was making inquiries about the BRCA gene and what the positive test meant in my case, not having been diagnosed with cancer.  I explained that based on the fact that I had tested positive for both BRCA genes, just like my Cullen loving sister, and because I was already battling an auto-immune disease, and my family history, and an immediate sibling was battling cancer- that all of these factors lead the geneticist and my other doctors, to strongly recommend a prophylactic double mastectomy and hysterectomy.  This sent him into a half-hour tirade about self-mutilation, and why would I opt to butcher myself when other treatments are available, and don’t I know what I’ll be doing to my body and how I will suffer because of it- all of this, mind you, while my recently operated on sister stood by and tried to remind him, albeit gently, that she was standing there with no boobs- and HELLO!  IS THIS ON?.

Now, here’s the thing.  I know that there are plenty of people who are going to have this kind of reaction- I understand that to someone who hasn’t faced down this difficult decision, or studied up on what this gene means, that this seems like an extreme way to handle this problem.  But, in fact, it is not.  They are just boobs, people.  Oh, and ovaries, and well, there’s that uterus in there too- and well shit, I guess it’s a lot of stuff that I have been rather attached to for some time.  Okay- so what if it is mutilation?  What then?

The way that I see it, I have two choices.  I either do this now, under very controlled conditions with a known outcome, and I decrease my chances of developing cancer by a significant amount OR  I wait until cancer develops- and there is an 87% chance that these previously referred to boobs will grow cancer cells, and then have the very same procedure under much less controlled circumstances followed by chemotherapy and radiation.  Now, there will be some out there who will ask- “but what about that 13% chance you won’t get it”.  And to them I say I have had frighteningly bad results in the health department- I am more likely to bank on winning the fucking lottery than I am to bet on that 13% chance that I won’t get cancer.  Further- these two surgeries only lower my risk of two of the five cancers that the BRCA gene leaves me vulnerable to- I’m not working with thrilling odds here.

So- mutilation it is.  And here’s the thing.  I have never been that attached to my breasts- I haven’t ever seen them as an asset, as it were, or a part of me that is particularly attractive.  They’re big- and some guys dig that.  One of their fans proposed a pre-surgery play-date with them, a last hurrah as it were.  The term play-date made me giggle.  But at this point in my life- they just really get in the way when trying to do downward facing dog.  I end up in a half-assed downward dog with a mouth full of mammary.  I know, charming visual.  But whether I have liked them or not- they are mine-and I don’t delight in the idea of having pieces of me taken.  I don’t know what will happen to my body when I am thrust into menopause at the ripe old age of 40.  These are not choices I make lightly.  On the contrary- with the exception of having a child, these are the most profound choices I have ever made.

There is one upside to never having been a great beauty.  I am not going from someone who has always relied on my looks to get by to someone who needs to work with other attributes.  I am cute- that’s my looks “status”. Sometimes I’m cuter than other times.  I have a tendency to eat too much ice cream and get pretty chunky- I’m not as cute then, but I ALWAYS have a good personality.  No seriously, I do.  Don’t sulky vampires go for the girls with good personalities?  In all seriousness though, I haven’t ever placed too much value on my attractiveness- I have understood that people either want some of this, or they don’t.  Sometimes I’m cool with that, sometimes it really pisses me off.  But here’s the problem- I am not comfortable with fake stuff.  Boobs that aren’t mine seem odd to me.  I wholly support other people doing whatever they please to make themselves feel good- but this isn’t that.  This is just a matter of staying healthy, and well, alive.

Whether the scars are visible or unseen due to surgery- the feeling will be the same.  I will know, as my sister does, that part of who I have always been is going and being replaced by something new, or simply replaced by an absence of- a space in me, both inside and out, that I am not as whole as I once was and that just maybe, I am not the woman who I have always been.  Now, there will be those who will jump up at this point and say, “no! of course you are- it’s about what’s on the inside.”  And maybe that’s true to some extent, but it doesn’t wash away what is true for me.  It doesn’t wash away that these genes are causing irreparable damage to me and my sister and although we might be able to rebuild (it sounds like we’ll be bionic women, which would be SO cool) we will never be able to be whole as we were.  Maybe wholeness will present itself in another way.  Maybe these spaces in us that will exist will be filled with something more profound like a greater appreciation for life, or a larger sense of empathy, or a greater focus on taking care of what remains.  We’ll have to wait and see.

But I would ask those who judge the choice to have these surgeries to keep in mind that no woman- in fact no person- willingly gives up body parts just for the hell of it- particularly parts that have defined our gender in some way.  As confident as I am that all will be okay in the end, it would be disingenuous if I didn’t admit that I am afraid of being unattractive and in that state, unwilling to leave myself open to that elusive soul mate who is wandering the world in search of me.  (that’s not overly romantic and unrealistic at all) Maybe he’s just really into women with little to no boobs- and this is the perfect opportunity for him to find me!  Here’s hoping that my Edward likes ’em flat and saucy.

I was planning on writing on the Frankenstein factor tonight- something that is weighing heavily on my mind as I set up appointments with the people who are going to be removing random body parts and as I watch my sister struggle with losing her gorgeous locks, which we both know will grow back after chemo- but still- it sucks and I wish I could carry that weight for her.  BUT, something else came up in a post from my dear friend Jessie that I want to address as we head into the story of me and my sis.

When I began researching the BRCA gene it was when my sister was getting tested.  She had been diagnosed with breast cancer and surgery was a must, but the type of surgery was still under consideration.    Based on her history- she had endometrial cancer at 27, I think I was mostly seeking the argument as to why she would HAVE to have a double mastectomy and not get the lumpectomy.  I thought, if she has one of these genes, then she has to do the whole thing- no questions asked.  And selfishly, that’s what I wanted. Not for her to have the gene- I’m not that sick- but for her to have everything removed.   I was focused on not losing her, and instead of considering the fact that she might not want to have everything removed, I was secretly screaming- TAKE IT!  TAKE IT!  Just save my sister for fuck’s sake.  Now, it turns out that she has both the BRCA1 and 2 so in fact, in the end, no choice was given.  She had to have the complete mastectomy.  With that said- when I did the research, the experts didn’t all agree that prophylactic surgery is the only answer in all cases.

Some experts will say that if you are identified as having either BRCA 1 or BRCA2 that it simply means that you have to be diligent about mammograms- something we should all be diligent about to begin with.  The geneticist I met with at UCLA said that many of her patients who were identified prior to having children, opted to have their families and then get prophylactic mastectomies afterward.  She was quick to point out that having the gene is not the same as having cancer- it just gives you more information in terms of what you need to look out for in your own life.  Truth be told, with my family history, I had already begun more frequent exams at 35 at my doctor’s suggestion.

Now, my case is somewhat complicated by the fact that I have MS- and with a compromised immune system there are fears about what I have the capacity to fight.  Further, my MS flares up when I have a cold- god only knows what kind of state Cancer would put me into.  Also, testing positive for both genes, and having a sister who has already developed cancer, all point to the conclusion that there is really only one way for me to deal with the BRCA genes.  But, even with that knowledge, and knowing that surgery is imminent, my physicians and I are doing what we can to keep me on an MS clinical trial that I began 18 months ago.  With 6 months until its completion, I would hate for all of the results to be unusable because we had to stop the study early.

All of this is a lengthy way of saying that just because you decide to uncover the “what if” part of the question, doesn’t mean that you have to leap into the “what then?” part of the equation.  We are all different in regards to mitigating factors, and it’s crucial to remember that having the gene and having cancer are not one and the same.  My sister had no option- she had to take the most aggressive course of action.  For reasons quite apart from hers, I have to do the same.  But many women opt for alternatives, and there are as many answers here as there are questions.  I’m just a big believer in knowing what I’m up against.  With that said, if given the choice to find out at 17 that I had Multiple Sclerosis, or wait until 33 when I actually learned I had it- I’d definitely opt for the latter.

For Jessie- who brought this up in her post- it is a very individual thing as to whether or not we learn about the BRCA genes in ourselves.  But just know that my sister and I are at the extreme end of the spectrum and I hope with all my heart that we remain anomalies- this is one group we don’t want anyone we love to join.

Stay tuned for the Frankenstein factor and boob shopping online in my next installment.  Until then, I hope you are all with folks you love on Thanksgiving.  My sister, in between Chemo treatments, is hosting the holiday.  Her ability to do makes me the most thankful woman on earth.

Last summer I was on a camping trip and privy to a conversation two women were having about something called the BRCA gene.  At the time, I had never heard of it- but they were discussing the fact that having lost their mothers to breast cancer, they were going to undergo genetic testing and if they tested positive for this gene, which as I understood it could be BRCA1 or BRCA2, they were going to have prophylactic mastectomies to significantly decrease their risk of breast cancer.  I thought to myself at the time, “these women are out of their fucking minds…why not wait until you actually have a sign of cancer?  Why not just be totally proactive and get mammograms on a regular basis?  Why take the most aggressive and physically hostile and mutilating approach”.  Be careful where you throw stones- that’s my first lesson.

It is less than six months since I overheard that conversation.  Since that time, my sister has been diagnosed with breast cancer, had a double mastectomy, is undergoing aggressive chemotherapy- as if there’s any other kind- and was identified as a genetic anomaly when she tested positive for both the BRCA1 gene and the BRCA2 gene mutations that indicate a high risk for numerous types of cancer, breast cancer just being the biggest of the threats.  So, it was suggested that I get genetic testing too.  Turns out, my sister and I are both genetic anomalies- we both carry mutations in the BRCA1 gene and the BRCA2 gene.  Those women who I thought of as nut cases- I am now considering calling to make amends because I am currently undergoing initial assessment for not only a prophylactic double mastectomy but a full hysterectomy as well.  With both genes, I have not been offered other options- but wait- this gets better- or worse- oh, you know what I mean.

I was also diagnosed with Multiple Sclerosis 7 years ago.  Now- please see pics posted in this blog- to look at me, you would not think that I am a walking time bomb- and most of the time, I don’t think of myself that way.  But this discovery, of this pair of mutated genes that have caused four cancers in my father, two cancers in my sister and the death of numerous family members, has made me feel vulnerable in a way that I have never even contemplated allowing into my daily life.  I began researching this elusive BRCA gene to see what I am up against, and I could find almost NO information on people who tested positive for both genes- hence the start of a blog.   I believe that knowing everything about what you are up against makes your odds better of surviving- or at least muddling through with a shred of sanity.  So as my team of physicians assess my risk, both in the realm of cancer and MS, and we decide how best to proceed in order to give me the healthiest, longest life possible, I am going to fill you in on the progress.  I figure this way, when another person like me comes along and wants to find out just how much it sucks to have both BRCA1 and BRCA2 positive genes,  she or he can track a journey that will have a positive outcome- because god help me- this is going to have a positive outcome.  I have a seven year old son who will accept nothing less.

Along the way I hope to include info. that will help others, stories that will make you laugh your ass off, cartoons drawn by my ex-husband who somehow captures my likeness with uncanny realism in stick figure form, and photos of a life that is being lived- at all times- to the fullest.  I don’t fuck around- I know life is short, I know self-pity is a bore, and I may forget both of those things on occasion- so please feel free to quote me.  I have always said that all a woman needs is the perfect pair of jeans.  JEANS people, not genes.  Sheesh…