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.

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.

As you may or may noAs you may or may not have noticed, I've slowed down with “My Mastectomy” lately.  t have noticed, I've slowed down with “My Mastectomy” lately. As you may or may not have noticed, I've slowed down with “My Mastectomy” lately.  As you may or may not have noticed, I've slowed down with “My Mastectomy” lately. 

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:

 

 

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

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.

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.