Sunday, December 14, 2014

All I Want for Christmas is my Two Front Teats

All I want for Christmas is my two front teats - and this Tuesday (on the first night of Hanukkah) my wish will come true.

I will be having my final reconstruction surgery, where the saline expanders will be replaced by silicone implants. Then two weeks later, on the eve of New Years Eve, I will be having the oophorectomy (ovary and fallopian tube removal). Both were scheduled with consideration to the school and calendar year. The idea being that I will  start the new year healthy and without any pending surgeries.

Up until this point, my emotions and behavior in anticipation of these surgeries are pretty closely mirroring those I expressed prior to the mastectomy. For the most part, I don't think about it - particularly during the day. It is life as usual - managing kids and work. But then at night, I become a total basket case, finding it difficult to fall asleep and then when I do fall asleep, I am often waking up anxious, with my mind racing. Usually my thoughts involve how unexciting menopause sounds or how my surgeries will impact my kids. (Will the older, more sensitive one cry like she did last time? What if my younger one has a tantrum out in public and I can't simply scoop her up? Or like I did post-surgery last time, will I need to rely on strangers to help getting my little one in and out of shopping carts and swings? Have I been too cavalier about lining up help, being hopeful that recovery will go as well as it went last time?)

Fortunately, what follows the anxiety phase is the phase I am now entering. First comes nesting, which is followed by zen. I stopped working on Thursday and since have been taking care of housekeeping stuff (paying bills getting groceries, doing loads of laundry, and over all getting my house in order.) Then I move to the zen phase. I will enter Tuesday totally free of worries and care - nothing matters but ME and getting myself healthy.

Of all the wonderful and supportive things people said to me prior to the mastectomy, the one that resonated the most was "you got this". And I do. I've already been through far worse and have come out of it better and stronger. I'm doing this surrounded by love and that's everything. I'm planning a much deserved family Disney vacation for April... looking forward to the future of fairy tales, castles, and magic.

Sunday, November 16, 2014

A Love Letter to Diem Brown

Over the past few months, there have been several celebrity deaths that really touched home for me: Joan Rivers, Tom Magliozzi from NPR's car talk,Tom Menino (Boston mayor), and now Diem Brown. I think when I say that name Diem you either know exactly who I'm talking about or you have no idea. For those on the ‘don't know’ side, Diem starred on several seasons of the MTV reality show The Challenge and died on November 12 after two bouts of ovarian cancer and one of colon cancer.

But before I explain what Diem meant to me, I should explain my relationship with the Real World. I started watching the Real World during its first season in New York when I was 17 years old. At the time, the cast of artists living in the big city represented everything I wanted to be. I related to Julie, the innocent one while I wished I was more like Becky, the confident vixen.  I wanted a boyfriend like Andre the musician, or Kevin the writer. I continued to watch season after season, year after year. The show evolved and I matured. During my twenties, I watched the show - finally relating to it. They even had a season in London and a season in Boston around the time when I was living in each of those cities.

I vividly remember when the spin off show Road Rules premiered, watching with my roommates, excited for another opportunity to follow the adventures of twenty-somethings. The cast members of both shows were like an extended group of friends. I cared about who was hooking up with who, who was coming to terms with their sexuality, and who put their finger in the peanut butter. The best was when MTV started producing the challenges with former cast members of both shows. In many ways, it was like a high school reunion - a chance to catch up with old friends and watch the dynamics when new groups interacted.

I continued to watch the Real World, as well as the challenges well into my thirties. But now I could not relate at all, finding common ground with kids hooking up in hot tubs was in sharp contrast to my life of diaper changes and mortgage payments. Still it served well as a source of entertainment and escapism.

I was first introduced to Diem in 2006, on The Challenge: Fresh Meat. She was everything I wasn't: a skinny hot blond sorority type known for her wild dance moves. She also had just finished chemo treatment for ovarian cancer. At that time in my life, while I didn't know the specifics of being brca1 positive, I did know that I had a strong family history of breast cancer and that the breast cancer and ovarian cancer genes were related. So cancer patients always felt like family to me, particularly when they were female and young and especially when it was breast or ovarian cancer.

Diem changed my vision of cancer. She was young and sexy and hooking up in the hot tub. There were tender moments with Diem portrayed with her boyfriend CT - like the time he took off her wig and kissed her and told her she didn't need to hide from him. She was also a kickass competitor - doing things I would never dream of doing! She was a master at repelling, hiking, climbing, and eating gross things.

I follow Diem on Instagram and knew she was sick again this summer. In fact, it was only days after my mastectomy that I saw she was fighting cancer for the third time. Whenever she posted pictures from her hospital bed, I noted how beautiful she looked. My hospital bed selfies were not nearly as attractive.

The day after I met with the surgical ob-gyn and scheduled my oophorectomy (ovary removal surgery) I read that Diem's doctors had given up in her fight.  I haven't been thrilled about my upcoming oophorectomy (scheduled for the end of December) and the implications of early menopause, but without it, I have up to a 70 percent chance of developing ovarian cancer in my lifetime. And risk factor statistics have not been kind to me so far. Diem's tragic and untimely death served as a reminder for me as to why you don't want to mess with ovarian cancer.

So thank you, Diem. You faced your final challenge with bravery and grace.  You fought to the end and were strong in ways no one should ever have to be. You helped me recognize how small my problems are and how lucky I am that I get to choose to not have ovarian cancer at all. Your death was not in vain. It may have saved my life. RIP

Sunday, November 2, 2014

Under Construction


I know, I know it's been forever since I posted a blog. I actually have drafted several posts over the past eight weeks but things move fast and as soon as I write something, it seems to change.  In the past eight weeks I went from rushing to get dressed from the shower, hiding my breasts from even my husband and kids, to texting pictures of my new *tits to just about anyone. I also went from being in fight mode (because now that I fought cancer I was going to fight the world, starting with the manager at Legoland over their predatory advertising) to feeling healthy and optimistic.   And finally, I went from hating my body to loving it.
I love a good analogy and thought of the following to describe my current breast situation. They are like a house under construction. My initial ones were a modest sized charming house that needed to be demolished because of asbestos. In it's place, a bigger house is being constructed by a great contractor. And while the blue prints look fantastic, the construction process includes some not so pretty phases.
So that's me - I'm under construction, or rather, reconstruction. I just had the last of six skin expansion appointments with the plastic surgeon. To backtrack...at the time of the mastectomy the plastic surgeon had placed  a silicone balloon expander under my skin. Then, once a week for the past six weeks I visited the plastic surgeon’s office where she filled a syringe with saline and then injected it in my breasts. It was a totally bizarre process. Picture filling a water balloon with water, because its pretty much the same thing.  Then for for the following few days after each expansion, I felt like I was wearing an extremely tight corset. It’s wasn’t so much painful as uncomfortable.
And now that the expansions are done, I get a six week break before my final reconstruction surgery...where I'll finally get my silicone implants. I've requested extra perky **tits that look like this picture of Kourtney Kardashian’s Because when it comes to issues of vanity, it is my American duty to keep up with the Kardashians.
__________
* totally appropriate word choice when talking about new awesome fake ones
** again, totally appropriate




Wednesday, August 27, 2014

The Day I was Diagnosed with Cancer, Came off Opiates, and Successfully Fought Cancer


August 14, 2014 was the one of the most accomplished days of my life. On this day I was diagnosed with cancer, came off opiates, successfully fought cancer, and for the first time ever spoke to the women who saved my life. And the most remarkable part? I accomplished this all while watching a three hour marathon of the Real Housewives of NYC reunion.
Let me explain further:
It was one week and one day post surgery and my daughters were at their aunt's house. I received a phone call from the breast surgeon to discuss my pathology results. She explained (in a much more sophisticated way than I'm about to) that while my right breast looked good and my nipples looked good, my left breast had fucken cancer (Ductal Carcinoma In Situ - DCIS). Yes, in the breast tissue they had just removed, there was evidence of cancer! Cancer that hadn’t shown up on my MRI in January or on my mammogram in June, but was now present in August. I had cancer after all. Shocking right? I'm still processing this news myself.
At this point it just seems to move to me swearing (truthfully it doesn't take much). Holyfuckenshit! I had cancer. How crazy and validating is that?! Thank God I got the surgery when I did, that I didn't listen to people who tried to talk me out of it (yes, there were actually a few assholes who tried), that I didn't delay surgery when I hurt my knee, or at any point let fear dictate my actions. I was brave and strong and knew this was the right thing to do and the right time to do it and I was fucking right. Luckily it turns out that if you are going to got diagnosed with cancer after a mastectomy, DCIS is the best type to get. Thankfully a mastectomy is enough to ensure that I don't have cancer anymore. So that's why I can say that August 14th was the day I was both diagnosed with and successfully fought cancer.
As for the comment about coming off opiates that was a joke made by my friend, a drug counselor, who recognizes how difficult opiate addiction can be. It just so happens that August 14th was the day I stopped using my prescribed painkillers, mainly because I was sick of the side effects.
My reference to talking to the person who saved my life is actually a very cool story. A lot of things drove me to genetic testing in the first place, but most significant was that one of my dearest friend's younger sister was diagnosed with breast cancer and discovered she carried the brca2 gene mutation. As a result, my friend went through genetic testing. I held her hand through the process and was there when she was told by the genetic counselor (the same one who I later met with) that she tested negative for brca2. Had my friend's sister not had breast cancer when she did, I may not have had my genetic testing when I did, nor my mastectomy when I did. On August 14th, I spoke to my friend's sister for the first time, primarily seeking post mastectomy bra shopping guidance, but I also got to tell her that her own diagnosis was not in vain - that it actually moved me to genetic testing and ultimately saved my life.
But mostly what I did on August 14th was watch TV. Hours and hours of TV; which included all three hours of the Real Housewives of New York City reunion.  After all that viewing, I made the following important conclusion: there’s no doubt in my mind that Aviva Dresher came to that party at Le Cirque with every intention of throwing her prosthetic leg on the floor.
Fuck cancer...these are the really important matters in my life.

Wednesday, August 13, 2014

How I went from hot mess, to total zen master.

For almost exactly one year, I nervously awaited my surgery. Looking back at this blog, it's full of references to managing panic attacks, feeling like a hot mess, and not being able to sleep. I’ve read the research on how stress affects executive functioning and in retrospect can attribute my lack of executive functioning to stress. Such stress induced incidents from the year (which I'm almost embarrassed to write down) include the accident I had where I injured my knee, the time I unknowingly wrote a check from a closed bank account, and when my car was towed for reasons I'm still too ashamed to describe.

I spent much of the year trying, but ultimately failing, at finding balance between home, health, and career. I thought I had finally had things figured out for this coming fall, then a week before surgery, at the worst possible time imaginable, the shit hit the fan and once again my career and childcare were in question.  Then something magical happened two days before surgery... the seas parted and my daughter was offered placement at a preschool program where I had initially applied back in October. I knew that this was both a good match for her needs and mine and would mean I no longer would be working simply to cover childcare expenses.  

Suddenly I shifted from self-described ‘hot mess’ to, as one friend described me, "a total zen master". I felt completely at peace...the stress of the past year now behind me. I approached the days and hours before surgery feeling totally at ease and relaxed. Two hours before surgery I wrote the following Facebook status. "Feel compelled to write after so many well wishes. I'm a few hours away from surgery. Feel confident, calm, and ready. The next time I'm on fb it will be in a body with 95% less risk for cancer than the one I'm currently in. How amazing is that?" And I meant it.

The night before surgery I folded laundry and kept up with the Kardashians. I didn't sleep well, but not in a nervous way - more in a high on adrenaline kind of way. The morning of surgery I messaged friends and listened to music as planned. During anesthesia my husband was my DJ playing the Jam, Generation X, and the Ramones. The last song I heard was Rock and Roll by the Velvet Underground, a song that has become my anthem.

I woke up seven hours later in the post-op room dreaming I was in my daughter’s bed. I asked to see my parents and husband who seconds later were by my side. I wasn't in pain, I had no regrets. A huge weight was lifted off my chest both literally and figuratively.

As I write, I'm still only a week post-op. There have been a few complications and setbacks, but that's to be expected. Mostly I'm good, really good, and feel optimistic and excited as I start this new chapter, healthy in body and mind.

Thursday, July 31, 2014

With surgery a week away, here are all the ways I'm pregaming


With surgery a week away, here are all the ways I'm pregaming :

1) I’m getting my drink on!  So it turns out that you aren't allowed to drink for the whole week prior to surgery. This ordinarily wouldn't present a problem for me, as I'm not really much of a drinker (or at least I'm not until someone tells me I can't, then suddenly drinking seems like the most important thing in the world). At the very least it would have been a nice option for calming my nerves in the days before surgery - plus my best friends are coming up from New Jersey this weekend (how amazing are they?)  and I definitely envisioned consumption of cocktails as part of the weekend. So upon hearing the news that I would not be allowed to drink for the week leading up to surgery, I had to figure out when I could imbibe in my final cocktail. I sat with the nurses at the breast surgeon’s office studying a calendar, counting the days backward from surgery, and hoping to determine that my friends’ visit was far enough from surgery that I could sneak in a cocktail. It was determined that I absolutely *could not* drink, but, (while not recommended) I could maybe get away with smoking a cigarette.  After the disappointment set in, I started texting local friends and pulled together an eclectic hodgepodge of people to go out with me for drinks last Friday, while I still could. Now between my bum knee (you may recall my recent fall/knee injury) and my impending breast surgery, I've been feeling like quite the old lady. As a result, I purposely picked a bar in close proximity to my house, that offered an early bird special, and the fabulous lottery game - Keno. I told my friends they all needed to wear orthopedic shoes (to match my sensible walking shoes) and carry a cardigan. I ordered a Side Car thinking it sounded very old fashioned (I was trying to play up the whole old lady thing!) and tried my hand at a round of Keno. It turned out that the Side Car was gross and I lost at my first ever game of Keno. It was decided that the next time we all go out, the plan is to make an appearance the the bar where all the healthy girls with big boobs go. Although I'm not sure where that would be. Any suggestions for such a place in the Boston area?

2) I’m getting my hair did! I also learned recently that post surgery, I won't be able to take a real shower for about two weeks. I'm sure this will be the least of my worries while I'm recovering, but I want to make sure my hair looks decent. So, I have scheduled mother/daughter bonding blow outs for me and my mother for the afternoon before my surgery. I might feel like crap, but at least my hair will look good post-op.

3) I’m planning my post-op wardrobe!  When I had my pre-op appointment with the breast surgeon, the nurse practitioner talked up this shirt they were going to give me for post surgery. It offers everything a mastectomy patient apparently needs (pockets for your drains, buttons in the front, made of a breathable fabric) and because of corporate sponsors, I could get my very own specialized shirt for free!  She then pulled out two of these fashion marvels for me to choose from. One was burgundy nylon and totally not my style, the other was this one:



It's not hideous, in fact it kind of reminds me of a Yankees jersey. And to be honest, it is really comfortable...but it's not something I would ordinarily wear. So since you, my readers, provided me with such awesome suggestions when I requested a pre-op song, I'm wondering if anyone has any ideas how I can, in the words of Project Runway's Tim Gunn, "make it work".


4) Of course I'm doing (and will be doing) lots of less glamorous pre gaming activities as well, like going to three doctors appointments, managing a couple of panic attacks, and scrubbing with chlorhexidine.  But mostly it’s been life as usual around here as I prepare. You know... dealing with a tantruming 3 year old, learning more about Mine Craft from my 8 year old than I ever wanted to know, and hanging in the sun every chance I get. All in all, I'm feeling good and ready for game day.

Sunday, July 6, 2014

​TWO WAYS YOU CAN HELP ME AS I PREPARE FOR SURGERY...

1. Help me select a pre-op song.
With surgery a month away, the thing I find myself fearing the most is the moment when my family kisses me goodbye, I'm put on a gurney, and rolled off to the surgical room - alone. So I'm trying to think of a way to lighten the mood. (Yes, I've seen the viral videos and no, I'm not going to have my medical team break out into song and dance. Because quite frankly, am I the only one who thinks asking doctors to learn a synchronized dance is a lot to impose on already busy professionals? Not to mention I wouldn't even know how to broach the subject with them.) Having said that, I do like the idea of music. So I'm looking for suggestions for the perfect pre-surgery song.  I want something that will make me feel assertive and strong (think Eye of the Tiger.) Front runners right now include: Police and Thieves by The Clash, Raw Power by The Stooges and Ready, Steady, Go by Generation X. However, don't feel you have to limit your suggestions to punk songs. It can be gangster rap, an 80’s hairband, a song with lyrics ironic to the occasion, your favorite workout song, or if you know me well maybe a song tied to a good memory together. I would love your suggestions, as you my reader/friends, have been such an important part of this journey that listening to a song suggested by you will remind me of my support system.
2. Help with my kids.
The  thought that has been keeping me up at night is worrying about not being able to care for my daughters while I'm at the hospital and during the weeks that I'm recovering. I really don't want them to look back at this summer with sadness. So what I need from you this time friends, especially those of you who are local, is to let me know concrete days and ways you are available to help us out.  Can you take them to the beach, to a museum, a local park, or even out for pizza?  I need them to be able to look back at this summer as a time of joy.

Tuesday, May 27, 2014

A dumb ass decision lands me on crutches, but teaches me something awesome.


So this past weekend I landed myself on crutches after falling from a zip line. Makes me sound pretty awesome and adventurous doesn't it? But actually it was the result of a  stupid decision and a poorly orchestrated plan to let my three year old daughter go on my sister-in-law’s backyard zip line during a family party. Of note (as it will be relevant as this story progresses) my husband was playing a show with his band in NY and wasn't in attendance at the party but his mother, his three siblings, and their spouses were.
So the accident went something like this: my three year old expresses interest in going on the zip line. I contemplate how and if we should do this, but go against my helicopter parenting instinct recalling that #1, one of her uncles somehow helped her onto the same zip line two weeks earlier.  And #2, earlier in the night she did absolutely fine in the pool without me (even though I wasn’t initially comfortable with that either).  So, I find another one of her uncles - because I'm of the belief that uncles are the perfect chaperones to assist my daughters in venturing out of their (and my) comfort zone. My daughter confidently climbs the ladder of the platform and I follow behind. My daughter and I stand on the platform (which I later found out wasn't intended for standing on) and I start to help her onto the zip line, with my brother-in-law right below us.  Then something happens, I lose my footing - maybe my Crocs cause me to slip on the muddy surface (no judgment on the Crocs, as they are actually really cute ballet flats) or maybe I am reaching for my daughter as she loosens her grip... or perhaps it was just a combination of both, but I fall off the ledge and throw my daughter off with me. My brother in law thankfully catches my daughter as I plummet to the ground, ultimately spraining my knee.
So why is all this relevant to a blog about my plans for a preventative mastectomy you might ask? Because in the hours that followed my fall, I couldn't do anything on my own. I couldn't stand, I couldn't walk, and I couldn't hover over my daughters. I needed my in-laws to help me do everything and I mean EVERYTHING. They carried me up and down stairs, helped me on and off the toilet, helped me into bed, prepared our meals, picked up my husband from a train station, etc., etc., etc. Thankfully, these are many of the very same people who I have lined up to care for myself and my daughters during and after my surgery. They were there for me and my daughters ten fold and I'm so grateful and appreciative.
As my surgery is getting closer and closer, the thing I find myself worrying about most is whether my daughters will be okay without me.  Well, I got a sneak peek at the generosity and love of  their caretakers weekend. Here is a snapshot of my adventure loving daughter having a blast while I was at the ER.
 
Clearly, we will get through this.

Monday, May 5, 2014

Slowing Down

As you may or may not have noticed, I've slowed down with “My Mastectomy” lately. Here is why:

1. It’s not on my mind and I have less time to give. Perhaps I'm in denial, perhaps I'm distracted by things like parenting and work (I'm now working increased hours at my three part time jobs) but basically,  I just haven't been thinking much about my breasts. Thankfully, being brca1+, the preventive surgeries, etc. just haven’t been on my mind lately. I also have not had any breast related appointments for a while.

2. I don't need it emotionally. In October, when I was still trying to make sense of my diagnosis and was overwhelmed by appointments and concerns over a lump, writing helped me process it all. But now that I'm lump free, and in a good place emotionally, I don't NEED to blog the way I did.

3. I have another opportunity to write. “My Mastectomy” has been an opportunity to do something I love - writing. However, I'm now blogging as part of one of my jobs. This has been great for me, as it's a paid opportunity to express myself in this manner.

I still do intend to write. I'll definitely write after appointments or when I need to work something out. And I'm sure as my surgery gets closer, I'll need the therapeutic element of blogging to be part of my life again. But for now, I'm slowing down.

Sunday, March 23, 2014

39 and Feeling Fine

This month I  turned 39 and I feel fine. In fact, I feel better than fine - I feel amazing! 39 has always been my lucky number (since my birthday is on 3/9) and this year I feel really lucky, as it is looking quite likely that I'll make it to 40 CANCER FREE! (This is a rarity both among many brca1 positive women and the women in my family.)

I started this blog 6 months ago to follow my journey to 40 and already my life has moved in directions I never expected. I've always been fascinated by how sometimes seemingly inconsequential moments can impact and change your life direction, and how in one short year, your life can change in ways you never could have imagined.  I'm feeling hopeful and optimistic about the year ahead. My health and career are both on an upward swing, and while I recognize I don't know what variables might throw me off track, this is my Before 40 Bucket List:

1. Get my cholesterol down and credit score up.  An old colleague of mine who experienced some pretty significant trauma used to joke that the stages of grief, you know as in the one from your Psych 101 class D.A.B.D.A. (denial, anger, bargaining, depression, acceptance) excluded the stage of irresponsible credit card spending.  For me, it presented in a different way, mostly just being forgetful about paying bills on time, even when I did have the resources to pay them. So I'm trying to fix all that and be on top of my shit. Also, in addition to all of the other exciting things in my genes, I've inherited high cholesterol.  So I've been trying to take control of that too by actively making better food decisions and following a "plant strong diet".

2. Take my puppies out for a walk on the beach.  I have a very fond memory of feeling totally at peace while nursing my daughter at the beach. Topless beaches just make sense and I would like to go to one with my natural (and in many ways imperfect breasts) while I still can.

3. Make something out of my blog.  I'm really proud of this blog and would love to see it reach a broader audience and have it published somewhere. Or at the very least, I would love to know Angelina Jolie read the two entries I wrote about her.

4. Make my house a home. We moved into our current house almost three years ago, and at the time I was so overwhelmed by adjusting to life with a new baby, that I never got my act together to make our house look good. I swear I spent more time decorating dorm rooms with urban outfitters candles than I have making my first real house with my kids look good. The most tragic part is that we have a gorgeous wrap around porch that is currently piled high with crappy plastic toys. I want to get a nice set of lawn furniture so I can enjoy my urban oasis this summer, particularly while I'm recovering from my surgery.

5. Travel. In addition to everything else happening this year, it is also my 10 year wedding anniversary and the year my daughters will turn 3 and 8. I had always hoped to go to Paris for our 10 year anniversary. I've never been, and I ache to visit the Louvre. On the other hand, I apparently once told my older daughter that when she was 8 and her sister was 3, we would go to Disney.  So I would like to find a way to make either of those trips happen.

And finally…

6. To arrive at 40 with a significantly lower risk of cancer.  

When I started this blog, it was to chronicle my journey toward getting a preventive mastectomy and oophorectomy, all in time for a huge 40th birthday celebration. I thought about what would happen with the blog if I ultimately did not follow through with the surgeries. I figured it would be okay because it would still be a log of my journey and how I arrived at my decision. Well here I am, 6 months later and I have NO doubt in my mind about the surgery. What I am questioning though, is how I want to celebrate my 40th. I am thinking that my resources may be better spent achieving the goals listed above.  A 40th birthday in Paris after visiting Euro Disney might just be the perfect compromise.

Bringing in my 39th year:

 

 

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Monday, March 17, 2014

Dear My Mastectomy Readers,

Just a quick update to tell you all is well and I haven't forgotten about you.  I'm in the middle of wring and will have a new post ready in the next few days (just not in time for "My Mastectomy Monday".)

-Stacy

Sunday, February 23, 2014

Dear Media, Please Leave Angelina Jolie and Preventive Mastectomy Patients Like Me, the EFF Alone.

Ever since I shared my plans for a preventative mastectomy, whenever boobs are in the news -  I hear about it. Someone sent me a link to the woman who made her medical team dance for her prior to her mastectomy, I also saw the Australian woman who publicly shared her naked post-mastectomy pictures on Facebook. My inbox was graced with the recipe for making “mammo-grahams”, I saw the story about the mastectomy scar covering tattoos, the study that said mammograms aren't effective, and the study that said preventive mastectomies save lives. These boob related topics all made their way to my inbox or Facebook page, often accompanied by the question, ‘what do you think’?
Most I find inspiring. The Australian woman is my favorite so far. The preventive mastectomy study was validating, and the tattoos blew me away. But then there was the article with the horrific title, “How Angelina Jolie was Duped by Cancer Doctors Into Self Mutilation for Breast Cancer She Never Had.”  I know that the friend who sent it to me meant no ill-will and was just curious of my opinion like everyone else, but I do take issue with the article, as well as anyone who places judgment on Angelina, myself, or any other women choosing a preventive mastectomy. And since the article’s title is so offensive, by simply breaking it down and addressing each word, I can defend all the reasons why I believe preventive mastectomy patients should be left the eff alone:
“Angelina Jolie” : the article title starts by singling out Angelina Jolie, clearly because she is a celebrity who publicly shared her story and also because using her name brings attention to the article and sells stories. Angelina and I are mothers with good intentions, making informed decisions about what is best for us and our children. Isn't that enough? It is as unfair to judge us for having preventive mastectomies as it is for judging a mother for working or not working, nursing or not nursing. I would like to believe we live in a society where women support each other and the choices we make. I get that Angelina is a public figure, so her activity is free for public debate, but this wasn't an issue she chose at random to be a spokesperson for. The harsh reality for Angelina is that she was moved to genetic testing after losing her mother and aunt to ovarian cancer. Yes, Angelina and I chose genetic testing and preventive mastectomies, but we didn't choose our diagnosis or prognosis.

Next the title uses the word “duped” : The article’s premise is that medical industry encourages unnecessary surgery to line their pockets. I actually do approach conventional medicine (as I do most things) with a certain degree of skepticism, but I'm just not willing to subscribe to the belief that the entire medical community is driven solely by money. I just can't picture my breast surgeon, who kind of reminds me of Dr. Ruth Westheimer, going home at night to her evil lair, after a long day of conducting delicate surgery, cackling that she ‘duped’ another one while she counts her money.
“Self mutilation” : Really? Really? This is by far the most offensive part of the title and actually confuses the hell out of me. We are talking about mastectomy, the surgery millions of women have undergone in the hands of well trained medical surgeons, to treat cancer TO SAVE THEIR LIVES! Are they all self mutilators? Or only those who do it for prevention reasons? Because you know... it's the exact same surgery?
The article questions why society accepts removal of breast for cancer prevention but does not say testicles or colon. I've actually questioned this myself and thought long and hard about it and here is what I concluded. Women don't actually need breasts. Breasts are like a nice accessory and mine have served me well. I've been fortunate that I've been able to feed two children with them and maybe in some subtle way they helped me attract a mate, but fortunately for me the mate I attracted loves me and supports me unconditionally - not based on my parts.
“Cancer she didn't have” :  Carrying the brca1 genetic mutation means that without a mastectomy, both Angelina and I have an 87% chance of developing breast cancer in our lifetime. The articles suggests that all people are at risk of cancer and that a diet strong in cabbage is the best way to decrease cancer risk. I believe in the power of ‘super-foods’ and all, but consider the following analogy for a  second: Imagine you were told by your car’s manufacturer that there was a mechanical 
problem with your engine and that if you don't have it removed and replaced there is an 87% chance that your car would suffer a mechanical failure and cause an accident. Sure you could argue that all 
cars are at risk for a break down and you could just wear a seatbelt in case of an accident, or maybe try to use premium gas to address your accident risk, but my guess is that most people wouldn't feel comfortable getting in their car if it carried that high a risk. In the same way, I'm not comfortable staying in my body while it carries this level of risk. So leave me the EFF alone.

Monday, February 3, 2014

I'm such a Jew

Regardless of my ideologies, lack of synagogue affiliation, or the fact that my (married) last name ends in a vowel and we have a Christmas tree in our house, it has become very clear to me that I'm such a Jew. Don't get me wrong, there is no shame in my game. I'm proud of my NY/NJ Jewish roots; after all I'm the offspring of two people who met through Larry David (true story: my parents met when Larry, my dad’s high school friend, hit on my mom) which I think is about as cool and Jewy as you can get.
This feeling of extreme Jewishness all started at my initial consultation with the genetic counselor. As I rattled off the extensive list of family members and their cancers, she wrote out my genogram. She then asked me if any of the family members I had just named were Ashkenazi Jews. When I answered, “yes, they all were,” like the Scarlet Letter, she marked a huge red ‘A’ right in the middle of her paper. I've decided the marking could also be an anarchy sign, making it the most punk rock genogram of all time. But yes, I'm so Jewish that I carry a Jewish gene mutation.
Also like any good Jew, I have been feeling extremely guilty lately. I feel guilty that since I’ve shared my story, people feel bad for me or have expressed sympathy toward me, when I don't even have cancer. I feel guilty that I'm choosing surgery when so many people don't even get a choice. I feel guilty that in my last blog post, instead of just celebrating the good news of a negative MRI, I made it a little too woe-is-me. I feel guilty that my diagnosis of a hereditary genetic mutation makes my family feel guilty. And I also feel guilty that there is a 50% chance that I've passed the gene to my two daughters.
But it’s all good. Because mixed in with all this guilt, is a fair share of pride. I'm proud that I come from a family of survivors. I'm proud that I come from a culture strong in intelligence, wit, and perseverance. And I'm proud that I can model for my daughters, that in the future, they too can make a pro-active decision regarding their health. And that, my friends, is something worth raising a glass of Manischewitz to.

Sunday, January 19, 2014

Confessions of a Cancer Free Hot Mess


So here is the really good news - I got my MRI results and the "something" is officially a "nothing" and chances are good that I'll be able to have the preventative surgeries on my terms after all.

And it gets even better - I don't  have any ‘breast cancer gene’ related doctor appointments scheduled for a nice long six week stretch. This means I can get back to business as usual, which this week has meant countless hours of picking up those stupid rainbow loom rubber bands off my rug, over analyzing a conflict with a colleague, and waking up each morning with an anxiety attack
.


Because the truth is, now that I have a moment to breathe and reflect, I realize how changed I am. I was once so calm, in fact that was an adjective often used to describe me (particularly professionally) and now I feel anything but. I probably need therapy or yoga or both, but true to form, I'm anxious about finding the time to do so.

Maybe this is just a stage of grief that I'll look back at with humor. You know, like how I look back and laugh at a time when “pregnancy brain" made me buy a milkshake from the McDonald's drive-thru and then 20 minutes later I realized that I was without my milkshake as I had never pulled up to the pick-up window. Or maybe I'm using the braca1 positive label as a scapegoat. I could simply be stressed because my youngest daughter is a handful, or because I'm slowly returning to my career after taking time off to be a stay at home mom, or because I'm worried about making it all work financially. Or maybe it's a combination of all of the above. But for now I accept that I'm a hot mess. But a hot mess who is cancer free! So things are looking up.

Monday, January 6, 2014

Getting to Second Base, How I Spent my Winter Vacation

It has been an extremely long two weeks spent mostly with my two daughters at home, not 
working. This hasn’t been very good for me, as it led me to be hyper focused on the lump on my 
left breast. You know, the one only my breast surgeon could feel...that I wasn't really worrying 
about? Except holy crap! Now I feel it too, and am worrying about it a lot! In fact all vacation 
week that is all I did - feel it. I felt myself up during a 6 hour drive from New Jersey to Massachusetts, for two hours at the movie theater watching Frozen, in the shower, and at night in bed. I had my Mom feel me up, my husband feel me up, and I'm assuming (simply because they have no boundaries) my 
daughters felt me up. Finally, on Thursday I had my long awaited breast MRI (still waiting on 
results) so again there was some more second base action during that appointment. 

In addition to feeling myself up, I've also spent a lot of the past two weeks reading and watching 
the delightfully charming, but also subtly depressing, Charlie Brown Christmas. My daughter falls asleep best when I read her the book so each night I laid in bed with her relating as Charlie said "I like getting presents and sending Christmas cards and decorating trees and all that, but I'm still not happy. I always end up feeling depressed.

New Years this year was also tough. It's hard to take a ‘New Year, New You, New Opportunities’
perspective when you know the biggest thing ahead in 2014 is major surgery. Conventional New Years resolutions seem trite to me this year. Don't get me wrong, the past two weeks weren't always doom and gloom - there were pockets of good times: celebrating Christmas Eve with a Feast of Seven Fishes (one of my best decisions ever was marrying into an Italian family), a road trip and quality time with my bestie, spending time with my parents. And I do have some good stuff ahead in 2014: my daughter is turning 3 (my absolute favorite kid age), I'll be celebrating my 10 year wedding anniversary with a man I'm still crazy in love with, and after a long journey to get there, I finally have three part time jobs that I really love. After giving it a lot of thought I figured out a realistic and fair new years resolution for myself. As this is the year I'm putting my health first, I resolve to follow in Michelle Obama's footsteps and put myself first in all manners. I'm all about being selfish and truly believe a happier and healthier me, will also make for a better mother, wife, teacher, and friend. So here's to 2014! The year of me! And since for the first time in 3+ years I'm not pregnant or breast-feeding, I can have 3+ drinks to that.