It’s been a rather emotional journey trying to decide how we approach the conception of our third child.  Of course, I feel that this pales in comparison to so many other decisions people face when contemplating issues involving fertility and/or reproduction. Nevertheless, this is part of my journey and required a great deal of thought.

After meeting with the reproductive specialist a few weeks ago, I was confronted with internal conflicts aplenty.  If I do go this route, would the benefits outweigh the risk?  If we don’t go this route, will my child resent me for not protecting him or her?  I learned that the only way to eliminate the BRCA gene pre-conception is to do IVF. The process is lengthy, uncomfortable and expensive.

First I would start hormones which would kick my ovaries into overdrive in order to extract as many viable eggs as possible (red flag #1 : ovaries on overdrive).  Then the eggs would be extracted and fertilized in order to create embryos.  From the successful embryos, the outer layer is scraped and then sent to a lab to be tested by a genetic probe specifically built based on my BRCA mutation (likely along with blood samples from my father and sister in order to be as comprehensive as possible).  Building this probe can take anywhere from 2 weeks to 6 months. At this point they can also test for all known chromosomal anomalies (basically like doing an amnio before you’re even pregnant).  Since this is my third child, I would also have the option of gender selection (tempting since we have two fabulous little girls and interestingly, according to the American Medical Association and other medical organizations in the US, the ethical standard is that gender selection not be used on a first born and only on subsequent children… they call this “family balancing”).  Once all of that is done, the embryos that don’t have BRCA can be chosen from (sort of randomly, but apparently based on which one seems most viable, Baby Darwinism).  Since I don’t have any known fertility issues at this time, only one embryo would be implanted and continuing on the hormones for a little while, I would wait for the fetus to mature and baby #3 would be born free of BRCA, chromosomal disorders, and hopefully a healthy and happy boy (yup, I said it, come on… you knew that was coming).

Damn, that’s a lot of work!!  Just having sex is a lot more fun (and takes a lot less time, wink wink).  Alas, we don’t really have the luxury of ignoring the options and just doing this for the thrill of it.  So the debate was discussed, only now with knowledge and facts to support each argument.  My biggest concerns were “unanswerable questions” (the doc’s term).  Would the hormones and the overworking of my ovaries potentially put me at an even bigger risk to develop ovarian cancer?  My risk is already so elevated that I almost feel the urge to get rid of them immediately (sort of like I did my boobs).  They don’t feel as much like the ticking time bombs that sat on my chest, but they still feel like a couple of live grenades in there, but as long as those pins don’t get pulled, we’re ok.  The doctor did mention the very remote possibility of the ovaries under duress, possibly rupturing and whatever complications might arise due to those unpredictable events.  Since I already have my two children at home who need me and who I desperately want to be around for, the risk to my health and longevity is legitimate and not entirely unselfish (so I try to convince myself). The risks of the baby developing birth defects that are only slightly elevated as a result of IVF (vs. natural conception) is another concern and an unknown.  Timing is an issue (and not that I’m able to predict how long it will take regardless), because building a probe could take up to 6 months, then my two and a half year old little one and the new baby would be even further apart in age than we had wanted. My husband was concerned about the emotional aspects for the baby, who may wonder why his sisters were conceived naturally and he was picked as the strongest embryo in the lab.  Not to mention, this could cost $20k, which our insurance does not cover.

On the flip side, eliminating the risk of this child having the BRCA mutation is so tempting.  Obviously, I don’t want any of my children going through what I did (even though, I honestly feel it wasn’t too hard to handle).  Each of my children have a 50/50 chance of having BRCA1, so if I’m a glass half full kind of person (news flash : I’m not), then perhaps my kids won’t have inherited this after all. And what happens when this kid is 20, gets tested and finds out they do have the BRCA gene and there was something I could have done about it.  Well, that would merit a big “Fuck you, Mom! You could have saved me from going through this? But you didn’t want to put yourself at risk?  Well, now I’m at risk.  Thanks a lot!”

Each argument has valid points and every child is a miracle no matter how it is conceived.  Fortunately, my husband and I are almost always on the same page when it comes to life’s monumental decisions and we feel that we make responsible choices that are right for us.  They may not be what others decide, but they work for us.  In this instance, we feel that the unknowns of IVF are riskier for our family than the knowns of conceiving naturally and facing whether or not this child will have the BRCA gene.  I’m sure I will continue to hem and haw long after this baby is born and you never know how things will go when reproduction is concerned.  We don’t count anything out, but for now, we’ll give it a shot the way we know how and have practiced for the past 15 years (wow, that’s a long time!).

Impressive Impressions

They say you only get one shot to make a first impression.  Whether or not what you portray is the truth, a farce or somewhere in between, it’s always a challenge to leave the impression you want.  They also say a picture is worth a thousand words.  The remarkable thing about modern communication and social media is that when you post a picture, you are subject to the thousand words of each and every viewer.

I love to post photos on Instagram.  I dig the filters that enhance the colors and make an image pop. I am enamored of the printing options by various vendors (2″x2″ magnets cover my fridge, tiny square stickers are on the notes I put in the girls’ lunch bags for school, and a memory game made up of our family pictures was an awesome gift for my little Valentines).  I don’t post often on Facebook, because I think if people want to see my pictures, they can follow me on Instagram. Instagram, like Facebook, allows your followers to post comments and, as always, make judgements.  Luckily, recent comments on my photos have included compliments about my parenting.  (Thanks for that!)

Always being more than a bit uncomfortable with excessive praise, I am left feeling like a fraud.  I have the strong desire to post a picture of a morning meltdown.  It happens almost everyday when we try to get out the door for school.  I raise my voice (ok sometimes it sounds more like a yell), someone cries, and we are always late to school.  This is neither fun nor is it good parenting.  But, I don’t share these moments because that’s not the impression I want to leave.  Not just for the people who look at my Instagram posts, but really for my kids.  I don’t want them to look back at our family photos and remember those rough morning times.  Sure, they’ll remember them anyway, but do they really need a photo reminder?  Isn’t it better to remember the fun things we do together?

While I’m much more comfortable erring on the side of self-deprecation and have the desire to post awful pictures of myself, I refrain from doing so.  Is it really that bad for people to think that it’s all fun and games over here?  I know the kind of mom I am and it’s all an exercise in balance.  My friends and family know the truth.  My kids know who I am and it’s somewhere between the fun, cool mom who appears on Instagram with crafts, science projects and home-baked cookies and the evil clock-watcher who is saying, “Buckle yourself in!  Do we really have to be late EVERY morning?!?”  I just hope that when the kiddies remember their childhood, they recall with fondness the version of me that’s more Instagram Mom and less Mommie Dearest.

Bad Words

File this one under “More Parenting Stuff I Don’t Know How to Handle.”  At two and four, my girls are very into language.  I so wish that I meant they are speaking French fluently.  Not so much.  I have let them have their fun with the potty talk for a little too long, but it’s time to drop the hammer.  After a few strikes, I insist that they head to the bathroom to say whatever they need to say and while they’re in there it’s free reign.

It seems all words are now categorized into good words and bad words.  Under the bad words umbrella, we have the obvious : poop, the aggressive : hate, the degrading : stupid.  I’m firm on these and kind of love when the big girl hears one of them on TV and turns to me with big eyes or says, “Mom, did you hear that?  They said [fill in bad word here].  I’m just saying it to tell you.”  The little one just says, “That’s not right.” And yeah, after we had a house full of friends over for football, the little one said “fucking” for the next two days, all under the realm of “bad words.” (To be honest though, I handled that one with a two faceted approach of redirecting and ignoring : “What did you say?  Walking?  Ok, great. Moving on.”) They get it, but what I’m really having a problem with is “die, dead and death.”  What do I do with these words?  What column do they go in?

We constantly say “My cell phone is dead.” or “You can’t play with that [insert electronic device here] because it’s going to die soon.”  TV shows (even the innocent ones) sometimes show kids playing games and when they lose, another kid says “You’re dead!”  I suppose it really means the character in their game, but it’s confusing.  When my husband was playing with the girls the other night, the big girl said, “Dad, you’re dead!”  I heard it and said, “That’s really not a nice word and definitely not a good thing to say to Daddy.” It was obviously innocent enough, but even though she shouldn’t say that, I fear I’m sending the wrong message.

Death is a part of life and while I want them to know the consequences of, say, running into the street or wrapping a jump rope around their necks, I also don’t want to scare them too much.  When they ask me about my scars, I can’t really tell them that I got my new boobs so the old floppy pair didn’t kill me.  Not exactly the message to send to little girls about their breasts (hello puberty, meet therapist). It’s not that words related to death or dying are bad words.  Certainly at some point, they will have to face losing someone they love.  Is it time for us to get a pet to illustrate this point?  They’re still a little young for this concept, I think.  But at what point do I tell them that every living thing has an expiration date?  Is it better to prepare them ahead of time or face this difficult topic when the time comes? You only get to be innocently ignorant for so long, I think I’ll let this one linger.  

All the World is a Stage

A friend of mine told me the other day about a New York Times op-ed columnist who is catching heat about an opinion piece he wrote on Lisa B Adams.  The mother of 3 has been battling breast cancer for many years and has a well-followed blog where she details her experience from the front lines.  Bill Keller, the NYTimes writer, was criticizing her choice to try nearly every treatment possible to prolong her life.  In comparison, he presented the case of his father-in-law who chose to succumb to his death in a manner the author felt was “humane and honorable.”

I understand both sides to this story.  It seems appalling that this writer would pass judgement on the most personal and critical of another’s life choices.  Part of me wants to say (along with the rest of the stone throwers), “Hey Bill, she’s not your wife, mother, daughter, or sister, what do you care?” But, as he says, “her decision to live her cancer onstage invites us to think about it, debate it, learn from it.”  The debate is the part of this that seems so wrong.  Yet, the “think about it.. learn from it” is entirely right.

Her readers aren’t the only ones who are learning.  As she tries different treatment options, doctors and researchers learn from her, too.  Keller points out that ” only 3 percent of adult cancer patients who are eligible to enroll in clinical trials do so.” Perhaps her courage to fight is not only to prolong her life, but also with the higher purpose of furthering medical research so others’ battles don’t have to be so arduous.  Her public crusade is commendable and heroic and deserving of the utmost respect.

One of the many reasons I choose to write about my own story publicly is to help anyone else going through something similar by learning from my experience.  My path doesn’t have to be theirs and it certainly pales in comparison to most.  Every situation is different, everyone makes different choices.  Ultimately, I think Bill Keller’s piece shined a light on the opposite ends of the spectrum of medical treatment for terminal cancer patients.  Each comes with its own consequences and merits.   Perhaps, his article did more good than bad.  Maybe he set out to validate his father-in-law’s choice of a quicker, more pain-free death, but what he really did was alert his readers to Lisa’s story and her blog.  When you visit her blog, its simple design has a grace and beauty to it.  Two eye catching details: blue flowers in the top left and in the top right, “Give to Memorial Sloan-Kettering.”  Well played, Ms. Adams, well played.

To Conceive and Protect?

It feels like forever.  Months have now passed and while I have several drafts in this queue, none seemed worthwhile.  Each time I began to write, I either drifted to a negative place or the subject matter seemed too off-topic for this space.  When I set out to write this blog, I never thought I would publish so many posts.  I figured I would have given up a long time ago.  My recovery from the last BRCA related surgery (my silver lining) was done and my everyday no longer had anything to do with my genetic mutation.  

Yet, I always have the nagging thought: do my daughters have it too?  I push it aside knowing that I can’t do anything about it and dwelling on it will not help anyone.  Alas, the debate ahead still remains : #3.  My husband and I were out to dinner with our girls recently and as we drove home after bellies were full, we marveled at our success.  “They actually ate, we each had a drink, and we never even had to pull out the iPhones as entertainment!” The light at the end of the tunnel crowns like the first rays of dawn.  It will get easier.  Our everyday will be more enjoyable, less like running a day camp, followed by a restaurant, and then a mini set production of Little Girls Gone Wild, in which the wee ones strip and run around dancing and shaking naked body parts before finally being coerced into bathing and getting into bed.  (Sure, that was a little bit wrong, but the similarities are uncanny.)

So, do we really want to add another person to this team of 4? We think we do? (The question mark is deliberate.) We were very lucky to have conceived our girls easily. We don’t anticipate that that will be a problem for the third, but now that we know that I have this mutant gene (it’s more fun to say it like that and to think of it like a Wolverine mutation or Michelangelo the Ninja Turtle rather than what it really is), is it our responsibility to try to go about this a different way?  I’ve decided that we need to seek the counsel of an infertility specialist who has information regarding pre-implantation genetic testing.  We hope that options will be explained to us in regards to trying to eliminate the chances that our third child will have the BRCA gene.  Like we sought the advice of my breast surgeon when we initially discussed risks for living with BRCA1 (surgery vs. “watch and wait”, etc), we will gather the info and then make decisions. Just the thought of this whole process made me sigh out loud just now.  It’s daunting.

Many emotions rise up from where I’ve been hiding them as I confront this issue here.  I can’t suppress all of the feelings. This blog has been the cheapest form of therapy.  So here it goes: all at once, I feel lucky, nervous, concerned, and guilty.  Lucky that I have choices and possibly the chance to protect my unborn.  Nervous because I think I’m going to be absolutely crazy on hormones and drive my husband and children nuts just trying to put up with me. Also nervous because I feel so sick during the first 18 weeks of my pregnancies and I really can’t imagine being a good mom to my two girls while going through that again.  Concerned that hormones might trigger my genetic response to form a different type of cancer that I’m now at higher risk for (ovarian, stomach, skin, take your pick of any/all of the above).  With my lack of knowledge of fertility drugs and their effect on embryos, I’m also concerned about any health risks that might be elevated for my third child if I must use these drugs and whether or not they outweigh the risks of him/her having BRCA1.  And of course, guilty, because no matter what I do, I will always feel guilty somehow.  In this case, it’s mainly about not having protected my girls from this.  I didn’t know that I had the BRCA1 gene until after the little one was born.  I couldn’t have protected them, but is it fair to protect their new sibling?  I think so, but will they?  Oy.

You see how quickly these thoughts turn so negative.  A third child, a joyful addition to our family (although our meals out will probably not be as joyful for quite some time), this should be so positive.  The miracle of life is somehow jaded by the decisions we face.  And then I remember, these are decisions for which to be grateful.  There is so much we cannot protect our children from, I might have the opportunity to protect my child even before conception.  I can always go to that dark place in my mind, but I’m going to try to flip it around.  I don’t think the internet (or the universe, really) needs any more negativity.  It certainly won’t be my contribution.

Making a Difference

Two Sundays ago was our local Making Strides Against Breast Cancer walk.  I have participated in this annual American Cancer Society event for the past 12 years with only two exceptions (once right after my youngest was born and last year when I had just had the double mastectomy).  So this year, the first since I found out that I am BRCA1+, was even more meaningful.  I loathe asking people for money, but I do for this.  I know, each year, I can count on a select number of family and friends who will support me (physically and financially).  Not only do they make a difference to the people who will benefit from the ACS’ research and care efforts, but they make a huge difference to me.

I told the girls we were going to vote as we walked to the polls on Election Day this week (twice, because I forgot my wallet and had to go back home for my license, arg!).  My four year old asked me if there would be a steering wheel there for when we “boat”.  I decided I needed to elaborate… and enunciate.  It was an odd exercise in self-education, reminding myself why I was voting as I tried to come up with the most rudimentary understanding of the American political process.  I told her, “We vote for the people we think will make the best changes, the ones we think are important. The people who will make a difference.”  There was so much more I wanted to tell her, but my answer actually stopped the endless barrage of “Why’s” so we left it at that.

The reason I wanted my girls to attend the breast cancer walk and to feel the energy of all of those people who care about fighting breast cancer is the same reason I like to take them with me to vote.  Everywhere they looked, there were people trying to make a difference.  At the walk, they showed their support of loved ones battling disease.  They donated their time and money in an effort to further research and contribute to programs that will help breast cancer patients.  They were united for a cause.  At the polls, especially since it was a local election this year, they saw individuals who were excited about doing something for their town and their neighbors.  Those who were campaigning had the drive to stand outside and ask to represent us.  Although, I have never been very political, it struck me this year how selfless that can be.  

My cousin ran for Representative Town Meeting this year.  I was so proud to see his name on signs, knowing that he is willing to give up his personal time in order to make his town better and to represent the best interests of its residents.  I’ll be sure that my girls (and his boys, for that matter) know how awesome that is.  He’s not just going to stand around and say he wants change, like so many others who have a soapbox for no reason, he’s actually going to make the change. Even if theirs is small, I hope my girls know how important it is to make a difference.  As Gandhi said, “In a gentle way, you can shake the world.”

Be Kind.

I hardly update my Facebook status.  I don’t think anyone wants to know when I’ve just finished my laundry, had too many mudslides, or funny things my kids say.  Most of the time, I’m pretty sure that I’m the only one that finds them hilarious.  I used to be the queen of “I guess you had to be there.”  I finally realized that I should just chuckle to myself and be happy that I find my kids adorable (and then text my mom, because grandmas are good for that, too).

I do make exceptions, however.  Particularly during this month of pink.  Breast cancer awareness month gives me an excuse to repost other peoples’ tips on prevention, reminders for mammograms, or funny boob stuff.  I’m allowed, it’s October.  PS. Get your mammograms, ladies.  The pink everywhere is a not-so-subtle reminder to do so.

I was perusing my Facebook feed the other day and happened upon an image that I loved. It so perfectly articulated what I aim to teach my kids. It displayed the text, “Everyone you meet is fighting a battle you know nothing about.  Be kind.  Always.” 4 likes. That’s it. I wasn’t aiming for likes, but that’s it?  I recently posted, “Hey, autocorrect.  I NEVER mean “ducking”.  Arrrg!”  (If you have an iPhone, you know that the autocorrect hates the words Fuck, Yo, and OY.  Apparently, autocorrect is a grammatical-stick-up-the-ass anti-semite.)  How many “likes” for that quip?  30.  And 4 comments!  I guess everyone likes to text “Fuck” more than they like to be kind. Boo. (And not in the Halloween way.)