Lucky.

We've been spending almost all of our waking time at home outside.  Warm weather has set in, and Scout seems to have inherited her dad's high heat tolerance.

Our garden is nearly planted, but our yard is a mess of dandelions and other weeds.  We're debating whether this is the year that we will break down and spray.  I don't want to use chemicals because Scout rolls in the grass and Nola uses the yard as her personal salad bar.  My general philosophy is that if it's green, then it can stay.  This is why there's a lot of clover (which also attracts the deer in our backyard.)

Anyway, last night, I found this... A five leaf clover.

We analyzed it carefully to see whether one leaf had split, and confirmed that it does, in fact, have 5 leaves.   I'm pretty sure it means I'm either super lucky or that I just spent all my luck in finding this and another 4 leaf clover.

What do Angelina Jolie and I have in common?

So now that you know a little bit more about BRCA...

As I've shared here before, in small snippets, my mother was diagnosed with breast cancer in November 2011.  She quickly began a grueling and aggressive treatment of surgery, endless chemotherapy, and radiation.  It was a long and winding road that came with plenty of tears and scars. But I'm happy to say that today she is cancer-free.

Breast cancer is not a single type of cancer.  There are, in fact, many different subtypes of breast cancer.  The pathology of my mom's cancer indicated that it was triple negative.  Triple negative cancers do not have hormone receptors and hormones are likely what fuels most types of breast cancer.  As an aside, this is the same type of breast cancer that Robin Roberts fought.  Generally, triple negative cancers are more prevalent in younger (pre-menopausal) women, African American and Hispanic women, and women with the BRCA 1 mutation.

My grandmother fought breast cancer twice.  Once in her  60s and then again in her last years.  She was initially diagnosed when the media brouhaha about BRCA first hit.  I remember thinking about it then and wondering if she had "the gene."  But because her breast cancer was diagnosed later in life and the suspected rarity of BRCA genes at the time, it wasn't considered to be likely.

You see where this is going now, right....

So based on my mom's family history and the triple negative status of the tumor, her oncologist recommended that she speak with a genetic counselor and be tested for the BRCA mutation.  If anything, they thought it was possible, though statistically unlikely, that she would be BRCA 1 positive.  To our surprise, she tested positive for the BRCA 2 mutation.  This was pretty heavy news.  But my family faced it with humor and tried to embrace our genetic misfortune.  My aunt was subsequently tested, and she was positive as well.

Which leads me to yesterday's post.... I had to decide if I wanted to know.  And honestly, I didn't have to think about it, because I knew that I did.  Knowledge opens the door to being more proactive.

Before I got tested, I went out and procured more life insurance.  Just in case.  My regular doctor set up a joint appointment for my sister and I with a gynecological oncologist and a genetic counselor back in February.  We had the option of a saliva sample or a blood test, and to my sister's chagrin I said we'd take the Scope.  Swishing a significant amount of Scope and spitting it into a very narrow vial in a tiny conference room without a sink was a comedy of errors.

My sister was paranoid our samples were going to be switched.

As we swished our Scope we were both pretty certain that we'd be positive.

Then we waited.  Eventually I got the call from the genetic counselor and she informed me, rather nonchalantly,  that I also have the BRCA 2 mutation.  A week or so later, my sister found out that she was also positive.  This set in motion more doctor's appointments than I have had in the last decade.  I've spent the last few months meeting with a series of doctors to help me figure this out.  I had the unpleasant experience of a breast MRI and my first mammogram.   I've felt every kind of FDA approved breast implant.  I've sat in the oncology waiting room for, literally, hours and hours.  During one of my first appointments, I knew I was in trouble when a man had set up a full home office in the waiting room.

I'm lucky to have a job that provides me with health insurance*, and I'm lucky to live extremely close to a world-class hospital. At this point, I'm not ready to move forward with prophylactic surgery** so my doctors have set up a more rigorous surveillance schedule.  But I know eventually I will move forward with surgery. Eventually.  The surveillance basically means I'm at the doctor for one test or another every 3 months.  And for me, surveillance isn't perfect.  Surveillance means you're just waiting to catch cancer at which point you have cancer, you know?  So basically all the choices suck... major surgeries vs. feeling like a ticking time bomb waiting to get cancer.

Which brings me to Angelina Jolie's op-ed in the New York Times.  At first I was like, ugh.   I thought about how my family has been quietly dealing with all things BRCA for the last year.  Then one celebrity writes a few paragraphs, and now the media is obsessed.  But ultimately I think it's great that it started a larger conversation about BRCA, breast cancer, and the choice to undergo a preventative mastectomy and reconstruction.  I think it will make it easier for BRCA positive women to choose preventative surgery and reconstruction and have more support in their community.  BUT if you read any of the comments on any of the online media reports of the stories you undoubtedly saw that the internet trolls were out in full force with their negativity and ignorance.  Ill-informed commenters spoke disrespectfully about her body, made jokes, second guessed her decision, or expressed their belief that removal of healthy organs was alarmist and radical.  I don't think they realize the weight of this information on an individual.  Or that prophylactic surgery is currently a medically recommended course of action for women who want to significantly reduce their likelihood of having cancer.  To women who are BRCA positive, this is not elective surgery.  Is a prophylactic double mastectomy really "elective" if the alternative is an extremely high probability that you will get cancer and you know that it can't be caught instantaneously?

The other day someone, who shall remain nameless, jokingly said this to me, "Your BRCA thing has some star power now."  Let's be clear, this isn't "my BRCA thing."  And it isn't just Angelina's.  Long before she wrote an op-ed, women were wrestling with life-altering decisions.  They didn't have the opportunity to write a New York Time op-ed, they were just quietly going to tons of doctor's appointments and trying to decide how best to protect themselves so they can be around for their families.  My family has become pretty well-versed in BRCA and all that it entails.  And while we make jokes about it because we can't sit and cry about it, it's really no laughing matter.  It's pretty serious business.

And when thinking about a gene mutation, I can't help but think of Darwin...

I think I spent more time choosing the words of this post than I have for anything else that's every appeared here.  I have plenty more that I could write about: The specific nitty gritty description of the horrors of cancer treatment.  What I've learned about breast reconstruction.  What I've learned about what is scientifically proven to help reduce breast cancer risk (it's not special water or green tea).  But for now, I'll leave it here.  I'm pretty much an open book about all of this, so if you are you reading this and have a question, please leave it in the comments.

* BRCA testing is expensive, partly because of Myriad Genetic's patent and monopoly.  A full spectrum DNA test is the most expensive (around $3000).  But if there is a known BRCA mutation in a family, then they can do a less expensive test (a few hundred) to look specifically for that mutation.  Due to an administrative snafu, my insurance company initially denied paying for my test.  But if I was a super hero, my super powers would be navigating bureaucracy and doing paperwork, so it was all straightened out.  My insurance covered the test because my mom was BRCA+ thus deeming it "medically necessary."

**This blog post from the Pink Lotus Breast Center does a really good job of laying out the options for someone who is BRCA+.

Would you want to know?

You have, no doubt, heard that Angelina Jolie had a prophylactic mastectomy due to the fact that she tested positive for the BRCA 1 gene mutation.  If you didn't hear, then you must be really talented at avoiding all forms of media.  This is a subject that I have opinions about.  I've been working on a couple of posts for awhile, and decided that this was a good time to get them finished.

I can remember in the mid-90s when the media was first talking about "the breast cancer gene."  I was a teenager, but I vaguely remember the conversations that were going on basically asking, "Would you want to know?"  I don't know what the uninformed teenage version of myself thought.

I should say this.  Science is not my strong suit.  I was always a good student, but science was never my favorite.  Once science became more closely tied to math, I enjoyed it a little more.  But words (e.g., English and history) were always my academic strengths.  Followed by math.  Then art and music.  Then science.  And at the very end was P.E.  So if what follows feels a little dumbed down, you know why.  Scientific people will probably cringe at how I've said some of this.

"The breast cancer gene," as it's referred to in popular parlance, is actually a mutation located on one of two specific genes.  Genes are basically little pieces of information that tell the body what kind of proteins to produce.  Some of these genes are tumor suppressors and do damage-control telling cells to stop multiplying into cancerous tumors.  "The breast cancer gene" is actually a mutation on one of two genes, BRCA 1 and BRCA 2, and both are tumor suppressors.  Science has identified the BRCA 1 and BRCA 2 genes and can now test to determine if there are mutations in the gene causing it to not work.  Hundreds of different mutations have been discovered, and some of these are considered to be deleterious (that's bad).  If a deleterious mutation in one of the BRCA genes is detected it basically means that the body will be less able to fight cancer.  A mutated BRCA gene can be inherited from either parent and can be passed on to sons or daughters.  If a parent has a BRCA mutation, then each off-spring has an independent 50/50 chance.  The identified BRCA mutations are fairly uncommon in the general population and are responsible for only 5-10% of breast cancer occurrences.  There are hundreds of known BRCA mutations, and certain deletions have a high occurrence in people who are Ashkenazi Jewish descent or other specific ethnic groups.

Here's BRCA 2 on the 13th chromosome.

At some point in the mid-90s, a company patented a methodology for a diagnostic test to identify whether an individual has the BRCA 1 or BRCA 2 mutation.  This company continues to have the exclusive patent for this technology and is, at this point, the sole provider of the test.  I'll perhaps come back to this at some point, because the Supreme Court recently heard the patent case related to this.  Because they are the sole provider of the test, it's basically impossible to get a second opinion.  The testing is done through a saliva sample or a blood draw ordered by a genetics counselor or an oncologist.  Individuals with certain types of cancers, a family history of cancer, or a relative who is positive for the BRCA mutation are likely candidates for testing.

Having a mutation in a BRCA gene does not mean that an individual will get cancer.  There is no crystal ball.  Individuals who test positive for a BRCA mutation have a predisposition for developing cancer in the future, and it significantly increase the likelihood that a woman may develop breast or ovarian cancer during her lifetime.  Unfortunately, BRCA is also often linked to developing these cancers at an earlier age.

In women, BRCA mutations are linked to a higher incidence of breast, ovarian, and fallopian tube cancers.  The increased risks for developing these cancers is significant when compared to the general population:

	Average Risk of Breast Cancer by Age 70	Average Risk of Ovarian Cancer by Age 70
General Population	12%	1.5%
BRCA 1	64%	10-60%
BRCA 2	56%	10-60%

Statistics are tricky business though.  Those are averages I found listed in various places, but research has suggested that the risks for breast cancer can be as high as 80% for BRCA carriers.  Other lifestyle and environmental factors also play a role such as hormone exposure, diet and exercise, environmental exposures, and other genetic conditions.   Additionally research has shown that younger women may have higher risks than previous generations because of a number of factors including starting families later, having fewer children, and exposure to chemicals and viruses.

Men are just as likely (50/50) to inherit a BRCA mutation as women.  Men with a BRCA mutation are also significantly more likely to develop breast cancer as compared to the general population.  BRCA mutations are also linked to other types of cancers such as malignant melanoma, pancreatic, colon, and prostate.

Testing positive for a deleterious BRCA mutation does not mean that an individual will develop cancer.  Like I said, science has not yet developed that crystal ball.  There are lifestyle and environmental factors that may alter increase the likelihood that a BRCA carrier will develop cancer.  But upon learning that s/he is BRCA positive, then an individual can take proactive steps:

• Surveillance (to spot cancers as early as possible)
• Chemopreventative Drugs
• Prophylactic Surgery 

With all of this in mind, I ask you: would you want to know?

Come back tomorrow for a continuation...

My Roller Derby Name.

Last Friday as I was going in to work I saw a poster for the local Roller Derby team.  On Saturday night they had a scheduled bout and would also be having a craft fair: Skate or DIY.  I sent my sister a text to see if they were interested, and honestly at that point I was only half serious.  But the wheels were set in motion and within a few hours the tickets had been purchased.  It was my first roller derby experience, and I was a little worried that everyone would find it boring or it would be miserable with a two year old.

I know you are all thinking, "You took a toddler to the roller derby?"  Yes.  Yes we did.  Why wouldn't we?  And she wasn't the youngest person there.  There were babies in utero, infants, other toddlers, and grade schoolers in skates.

I am happy to report that everyone enjoyed themselves.  My 12 year old nieces loved it.  It was a far better way to pass a Saturday night than staring at bad tv.  And there was plenty of open space, away from the action, for Scout to wander, run, jump, and act silly.  For $1, you could even get your very own "black" eye, which looked surprisingly realistic.

You should see the other girl.

We still don't understand all the rules or the intricacies of the sport.  Admittedly, we were a little lost.  But we learned some of the basics, enough to follow along, and enjoyed watching all the same.  We particularly enjoyed all the alter ego Roller Derby Girl names (like "June Cleavage").

The 12 year olds left wanting a pair of skates.  And frankly, so did I.  I loved roller skating as a kid. We even had a roller skating unit in PE. I shipped my roller blades back and forth to college, and still have a pair of inline skates that need to be unearthed in the garage.    But a pair of old school quad skates are calling my name.  Maybe Definitely with pompoms and maybe some wings.

I'm pretty sure I don't have what it takes to be a Roller Derby Girl, but I'll support them by buying a ticket again.  And we've been thinking about our Roller Derby Team Halloween costume.  Mostly we are thinking about fantastic outfits and names.  My nieces gave me a name to consider: "ElizaDEATH."

Mother's Day

I don't like contrived Hallmark holidays.  It always feels like, "Hey, you were totally undervalued and under-appreciated for the last 364 days, so we decided we'd give you this one."  My cynicism is coming through, right?

it's funny.

I don't really feel like I need to celebrate Mother's Day, at least as a mom, because I do feel pretty valued and appreciated most days.  Our little family has found a groove where responsibilities are shared and work is equitably distributed and fun is shared by all.  At least most of the time.  But damnit, it's Mother's Day.

First, I have to wish a Happy Mother's Day to my mom.  She's endlessly supportive and showed us how to do this mothering thing right.  And who, along with my dad, taught me that a good sense of humor and a little hard work make just about anything possible.

Mom with her newest grandbaby.

She won't like having her picture on the interweb, but I say, why not?

I'm not a person who played with baby dolls (Barbies were another story), babysat endlessly, and dreamed from an early age of having babies of my own.  I know plenty of women who did.  I, on the other hand, came to the decision a little later.  I worried about having a career and being responsible for the health, comfort, and morality of another human when I couldn't keep a houseplant alive (still can't).  But my only regret now is that it took me so long to realize how incredibly awesome this whole mom-ing thing could be.  I never realized that one job could be so all-consuming, exhausting, hilarious, frustrating, extremely difficult, fun and utterly fulfilling.  And I'm only 2 years in.

I'm confident I've made mistakes, and that I'm sure to make plenty more. But I have a sense that we are at least doing a few things "right."  Honestly, we just sort of set Scout loose in the morning and then see what she does steering her away from danger every now and again.  

I'm baaack.

Scout says that a lot.  She'll say she needs to go in the room for something.  She'll hold up one finger and say, "I be right back.  Ok?"  She leaves and returns with her treasure, and triumphantly says, "I'm baaa-aack."  So I'm back.  But treasures, I do not have.

I'm returning to the interwebs with nothing to show for my time away.  I mean, I've been doing things, but nothing that riveting.  Plus spring is the start of our busy time at work, and that's left me a little more tired than usual.

So what have I been doing...

• After the first box of swimsuits ordered from the interwebs failed me miserably, I spent more time than is healthy looking for a suitable alternative.  I'll let you know when it arrives.  Or I'll continue my odyssey looking for the perfect swimsuit (that probably doesn't exist) that makes me feel super comfortable and isn't nearly a burqa.

• The weather has turned into Spring, at least for now, and we took a leap of faith and started planting the garden.  This is a leap of faith because we have some pest issues, the soil doesn't look as rich as it should be, and mother nature has already given us one winter encore.   

• I'm planting things a little differently this year and trying some new things.  It'll either be a brilliant plan or a complete failure.  It remains to be seen, but I think we'll survive either way.

• We've been spending most evenings, when it isn't raining, "owside."  We've been perpetually covered in mud, sidewalk chalk dust, and bubbles.  

Scout runs up and down this hill playing a game she calls "Ready, Set, GO"

• I've been knitting a little, but I seem to have a bit of a block with that.  I want to knit but I don't know what to knit.  I have lots of ideas but zero motivation.

• Two year olds are hilarious.  And frustrating.  But mostly hilarious.  So when I'm not pulling the hair out of my head from the frustration of her desire for autonomy and/or full body tantrum, I'm laughing.

• I've been making a slow start at some spring cleaning.  I need to tackle the outgrown baby clothes and toys next.  I feel like it's full-time job.  I've yet to find a really good method for keeping the clothes organized and stored.  I'm trying to be selective with what I keep and sending everything that we don't really love to Goodwill.

• In the meantime, we're still living in the house of dolls.  Scout's collection continues to grow.  I think she's in the process of moving a large collection of toys from my sister's house to ours, piece-by-piece.

"Big Baby" came home (in a clear plastic rolling suitcase) a couple weeks ago.

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