IVF

My inbox is peppered with articles about the BRCA gene these days.  The latest was from my mom who saw an article in the New York Times with a personally thought provoking paragraph (below).  
“It is also possible for women who are mutation carriers to avoid passing the gene to their children, by undergoing in vitro fertilization and having embryos screened for BRCA genes. Then, only embryos free of mutations can be implanted.”
Now, I have a huge game changing decision ahead of me.  Do I explore the world of IVF in order to prevent my third child from the 50% chance it has of inheriting my BRCA1 mutation? 
I have been very lucky in that my husband and I have been able to conceive our children naturally.   They were intentional.  I charted my ovulation and we knew the times of the month when we had the best chances to conceive and fortunately, the fertilized eggs grew into our mostly uneventful pregnancies and the births of our two girls.  This is not a privilege lost on me.  
So it is with my usual guilt and uncertainty that I face the potential for IVF.  If I can conceive naturally without complications, why would I go down the IVF path?  I didn’t know of my genetic mutation before I had my girls, so now that I know, is it nearly an obligation to protect my unborn child from this?  I don’t feel that my positive BRCA1 result is the ticking time bomb of death that I felt before I had the double mastectomy.  I took care of it.  Yes, I still have one more major surgery to go, a tattoo (or two) to get and the hysterectomy/oophorectomy in my future, but I feel those are all manageable.  But do I want my children to have to go through them?  And in 20 years when they actually have to start weighing their options and assessing their own risks, will there be other medical breakthroughs that mitigate their risks less invasively?  Are there risks with IVF that could outweigh the benefits in my case?  Would I wind up with multiples? (I don’t know what the fuck I would do… I don’t think I’m Mom enough to handle that although I’ve watched several friends and family members be the best, most attentive and caring moms of multiples… I don’t have the bandwidth to even think of it for myself right now.)
As I was discussing this whole new thought process with a friend yesterday at a Memorial Day BBQ (what better place to have an in depth conversation about fertility?), he said, “You work with what you know.”  He’s right.  I know that I have the potential to pass this damaging gene on to my children, I know now that I have an option to eliminate that risk, but I don’t know what risks/rewards come with IVF.  I have so much research to do now with this new option.  I’m exhausted and overwhelmed just thinking about it.  With that and the headache I just got from too much self-reflection, at least I can rule out conceiving the next kid naturally tonight.

Benjamin Franklin

My mother-in-law sent me an article the other day that was published in the New York Times.  It was a more scientifically informative piece than what Angelina Jolie had written about preventative double mastectomies.  What she did was courageous and will, I believe, have a more positive than negative effect.  Yet, I agree with this recent article that her op-ed made the surgical process seem like a walk in the park, at least compared to how it was for me.  Maybe she had a nanny for each child?  Maybe the skin sparing double mastectomy that she had really lends itself to an easier recovery?  Or maybe she just wanted to stay positive?  For herself, for her family or for the thousands of people who will now consider this course of action based on what she said?
This process has not been easy and it won’t be easy for anyone who is faced with a positive result from a BRCA test.  This is such an individualized experience in every aspect.  Each person’s reaction to their test result will vary.  The surgeons they choose, the insurance they carry, the support they have from loved ones all make it different.  To judge another person’s view of their own experience is unfair.  I have said before that I feel lucky to be going through this at 31, because I have the benefit of being young, in shape and in otherwise good health right now.  These factors likely make my recovery easier than someone else’s.  I imagine that Angelina was in even better shape than I was (did you see her stunts in Salt?  I think it’s pretty safe to say she could out bench me at the gym, no?).  So, maybe her recovery really was easy or maybe it was just easier than she thought it would be.
Angelina Jolie was obviously more interested in projecting an image of strength and positivity rather than one of being a victim of her circumstance.  Although, she may have (hopefully) inadvertently set some unrealistic expectations for women who want to now have the preventative double mastectomy, I commend her for what she’s done.  She’s opened the door for dialogue between patients and doctors and she could potential save the lives of unknowing, but at-risk BRCA positive individuals.  If early detection is key, then prevention is even better! As Benjamin Franklin said, “An ounce of prevention is worth a pound of cure.”

Waiting to Exhale

I’ve always thought that Waiting to Exhale was a pretty dumb title for a movie. I mean, don’t we exhale every time we inhale?  Isn’t that the mechanics of breathing? Something so natural and automatic. I never understood what it meant until the other day when the little one’s surgery was over. 

It didn’t take long for her to bounce back from the trauma of anesthesia. I think it took me longer to put it all behind us, but then again, it always does. I won’t regale you again with my trips to the seventh layer of hell (the area of the surgery center where the babies come to from anesthesia), I will only say that they all cry as one and seem to join in with each other as their wails reach crescendo in the most excruciating symphony. The procedure for getting tubes in the ears is a simple and quick one (it was only 8 minutes from the time I let the nurse take her away from us until the surgeon came out and said it was done and she did great), the little one recovered so much faster than the big one did last year when she had tubes in and adenoid out (a more involved and invasive procedure that makes recovery much more painful). Thankfully it is now behind us and as she fell asleep in my arms that night, she wasn’t in pain and I felt an enormous sense of relief. 
I understood what it meant. I had been holding my breath for so long in anticipation of that day. The anxiety of the unknown is never something I can easily manage. I suppose that’s fairly obvious, considering the double mastectomy. I’m grateful that this ordeal is behind us, that my little one did so well and is already back to herself, and that hopefully she has the best chance to be ear infection free, antibiotic free, pain free… Just free. 

Scheduling Internal Conflicts

One of my defining features has always been my boobs. When people (read: my husband) would tell me that my eyes were the first thing they noticed about me, I’m pretty sure they were talking about the enormous breasts that were staring at them. Similarly, when you hear “breast cancer gene”, you just think of breasts. But part of being BRCA1 positive is also the heightened risk of other cancers, too.
Ovarian cancer can be sneaky and with my up to 40% chance of getting this disease, I have to maintain a schedule of screenings until I can ultimately have my risk eliminated with an oophorectomy (and/or likely a radical hysterectomy).  The signs and symptoms of ovarian cancer often don’t appear until the disease is in its more progressive stages. So, every six months, I get an internal ultrasound to ensure there is nothing suspicious going on in there.  I also get a blood test called CA-125, which can indicate ovarian cancer (it can also indicate other ailments and sometimes results in a false positive, so there is some debate over its usefulness and is often only recommended to patients with an increased risk).  I’m overdue for my biannual test (whoops).
With my little one going in for her own surgical procedure in two days and in between my surgeries and life, in general, I’ve just let this bit of scheduling go.  Stupid excuses?  Yeah, pretty much.  Another one of the things I should be doing to decrease my risk of ovarian cancer is to go on birth control.  I have also resisted this and I’m not sure that’s wise either.  I don’t think I’m quite done having kids yet, as there may be one little bugger still left to be conceived in my rather ominous ovaries.  So I’m not thrilled with the idea of being on hormones before I try to calculate when I’m ovulating, charting that and then figuring out when we should do it, all while consulting with the Chinese Lunar Calendar in order to get that boy. Third time’s a charm?
I remember talking to a fellow BRCA positive friend who was on the fence about whether or not to have a third after her double mastectomy.  When we spoke, she was halfway through the process and I hadn’t even begun.  She said, “I feel like just getting the oophorectomy now.  I just want this to all be behind me.”  I really didn’t understand how she could give up on her dream of a third child so easily.  I get it now.  I felt like breast cancer was looming over me and now that that risk is eliminated, I have the ovarian cancer risk rolling in like a dark cloud in the distance.  How fast will that storm move in or will it blow off to shore?  Should I roll up the picnic cloth and just pack it in to be safe?  Or do I enjoy the time we have until the clouds are a little too close for comfort?  I’ve been advised to wait for the oophorectomy and hysterectomy until I’m 35, so I have 3.5 years to decide.  I just have to be smarter about scheduling my screenings and either getting knocked up or going on the pill sooner rather than later.

Tres Jolie

As a person of the Friends generation, I was always Team Aniston.  Today, my perspective has changed and despite my fierce loyalty, I’m adding Angelina Jolie to my roster.  After reading the mega-star’s op-ed piece in the New York Times this morning, I have a newfound respect for her.  She, too, chose to have a preventative double mastectomy after receiving a BRCA1 positive result.  It’s one thing for me, the suburban wife and mother, to shed the killer lumps, but for her to do it under the spotlight of the scrutinizing public eye, it’s a bit different.
Angelina’s body is part of her livelihood and has defined her in many ways.  Tell me that you don’t see a poster of her as Lara Croft and think “Daaaamn, that’s a hot bod! Check out those knockers!” She is iconic in large part due to her appearance, but today, I believe it’s her courage that is her best feature.  Angelina’s natural breasts probably have their own website and certainly shrines around the world.  Yet, she was willing to part with them to extend her life, to be with her children, to show them and the world that she would rather be proactive than vain.
I have always believed that a person’s medical information is very private.  I choose to write about my journey because it has been cathartic, but also to increase awareness in the hopes that my experience will encourage others to assess their own risks and take action to protect themselves.  By sharing her medical choice, Angelina has used her celebrity to do the same, but on a much grander scale and hopefully with a lot more impact.  She is going to help women everywhere know that they have a choice.  Breasts will droop and beauty will fade, but in this case, your health doesn’t have to.

Mother’s Day

Similar to Valentine’s, I don’t like to make a big deal of Mother’s Day for myself. I don’t go into it expecting much, but just like Valentine’s, my husband does his best to wrangle the munchkins and do something special.  He took them swimming yesterday while I was at a friend’s baby shower and when they came home, the big girl said, “Mommy, we got you something!” He quickly shushed her and then when he wasn’t looking, she looked at me with a conspiratorial smile and put her finger to her lips to let me know that I was supposed to keep that hush hush.
As I might have mentioned, my favorite thing right now is sleep.  It’s like when you are on a diet, all you want is cake.  Well, all I want is sleep.  So with kisses and “Happy Mother’s Day” wishes, the hubs took the little ones downstairs this morning and allowed me to snooze.  After a little while, I heard some whining and yelling (nothing unusual) and then a loud bang.  I waited and didn’t hear any crying, but figured, I was up and I went downstairs.  The big girl came running over to me from the craft area of the playroom and exclaimed, “Daddy said, when you open it, hearts will come popping out!” He and I both laughed as he said, “We aren’t ready for you yet, go back up please.”  No one needs to tell me twice to go back into my cozy bed.
It’s funny how I remember spoiling similar surprises for my mom back in the day.  I always felt bad after, but she never seemed to mind.  I get it now.  I love the fact that the big girl is so excited to make me something or give me something.  It’s adorable that she can’t wait to tell me!  I hope she always wants to tell me everything and can’t stop herself from holding it in.  As an over-sharer myself, I can appreciate that quality in her.  I know my mom appreciated it in me (until high school and then I was asked to not tell every detail, because apparently I have no filter).
I often think about how I will try to be a mother to my girls like my mother is to me, fostering the same closeness and trust.  When children are little, the relationship is so one-sided.  The mother constantly providing everything, giving all day, everyday, fueled by unconditional love.  As a child grows up, things become more reciprocal.  As an adult, it’s a choice whether or not to spend time with your parents.  We see our parents because we want to, because of how they make us feel.  It’s pretty incredible that my siblings and I always want to be around our parents.  They make us feel good about ourselves, about our kids and our lives and choices, in general.
Mom – thank you for making me feel smart, special and like I wasn’t always ruining the good surprises in life.  Most of all, thank you for making me feel loved.  I will do the same for my daughters!  Love you.  Happy Mother’s Day!

Encore

The torment of the gray area.  Indeed, the little one’s ENT appointment went exactly as I had predicted. Her ears looked normal yesterday, but her history is compelling.  So the surgeon left it up to us to decide if she should get tubes.  He even has an appointment available next week, which is perfectly timed. There’s ample time for her to recover before I have my next surgery in June.
We faced this same situation with the big girl last summer when deciding whether or not to do her surgery.  Of course, we opted to go forth and she hasn’t had an ear infection since, she has barely gotten sick (knock on wood), and she actually sleeps through the night!  All of that makes us think doing tubes for the little one will be a positive thing.  Enter Mom guilt and doubt.
It seems with parenting there is never a definitive answer.  If I look left, will she fall and hurt herself?  If I don’t look left, will she be fine?  There’s no telling and it drives me crazy.  All signs point to surgery.  My husband says, “Yes, book it!”  So, next week, my baby goes under the knife.  The thought immediately sends my stomach to my throat.
Rationality, fleeting as always, tells me to calm down.  As the ENT said yesterday, “Driving here was more of a risk than what she faces in the OR for tubes.”  Since she is under two years old, she won’t have her adenoid removed just yet.  I suppose that will be a wait and see situation where we monitor the success of the tubes and determine if that’s necessary at a later date.  We don’t know if it was the tubes or the adenoidectomy that really made all the difference for the big girl, so it’s hard to say if tubes will be the answer for the little one, too.
Obviously it’s not the reason we went down this path, but I feel selfish like I’m almost doing this to her so that I have the possibility of sleeping through the night, too.  As everyone around me has reassured me, it’s not just for me.  She needs the sleep, too.  How can she develop if she’s not rested?  I know that I barely function, so what’s it like for her at such a crucial age in her growth?  Furthermore, the five courses of antibiotics she’s had over the last few months is not beneficial either.  Since the big girl’s procedure last year, she hasn’t needed an antibiotic once.  The little one shouldn’t be on them all the time.  The surgeon said, “If she gets another infection within the next six weeks, it would be more definitive that she needs tubes.”  So why wait for what is probably inevitable?  Here we go again.