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.

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.

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.

MY WAY of responding to a BRCA1 (Breast Cancer Gene) Diagnosis

I woke up the morning of Monday, August 26, feeling really anxious. I texted my friend regarding some work related stuff that was on my mind, but really the only thing on my mind was the phone call I was pretty sure I was going to receive that day. I knew that my social worker was just returning from vacation, so assuming my test results had come in while she was away the previous week, I knew I would be hearing from her before long.

Pretty early in the morning my phone rang, it was a local unfamiliar number,  I knew immediately it was my social worker. The conversation was short, to the point, and appropriate. She told me that I did carry the same gene mutation that ran in my family, and  reminded me that nothing has changed for me and my body from the day before. She then asked me if there was anything I needed from her and arranged to call me later in the day. During the brief phone call, my 2 year old used the potty and I applauded her. We chuckled at the contrasting levels of good and bad that were being revealed within a few short minutes of each other.

Then in the minutes, hours, and days that followed...

I kind of lost my marbles. Simple tasks overwhelmed me. I was supposed to get a form notarized for a new temp job, and I just couldn't seem to get my act together to do it. I made several trips to various notaries and each time I was missing something. Plus I lost my ATM card.

I felt validated. Breast cancer has shaped everything about who I am. I studied School Counseling in grad school because I was still the sad little girl who had a sick mommy. Since I was 23, I've been getting yearly mammograms, ultrasounds, and MRIs.  All my life I've found myself connecting with other women who also have strong breast cancer histories.  I now know that none of this was in vain, because breast cancer is in fact, very real for me.

I tried to be proactive.  At the same time as I got my diagnosis, I was also stressing about work and finances, so I thought this was an opportunity to make money. Knowing that the breast cancer gene was a hot subject, I looked for ways to sell my story.  I contacted everyone I knew who had connections to journalism or the media.  I came very close to being the subject of an article that the PR department of my hospital was to run in a local paper's "pink issue."  From these half-assed attempts to get my story noticed, my blog evolved. And thank god for that, because I found my authentic and often "edgy" voice (that has since mocked the “pink” movement and the hospital where I'm being cared for). My initial intentions for writing may have been somewhat selfish, but the byproduct has been unbelievable.  I could not have asked for a better therapeutic tool for myself.  This blog has saved me.

I tried to be a bad ass. I bought my first (and last) pack of cigarettes in 10 plus years.  They cost $10. Holy crap! I'm way too cheap to continue that habit.

I stopped sleeping. I was fine during the day when I was busy, but was scared of going to bed and being alone with my thoughts. So I just stopped sleeping. 

But mostly, I felt prepared. Deciding to go for genetic testing was not a decision I made on a whim.  Rather, it was a decision 15 years in the making.  I was first referred for genetic counseling when I was 23. At the time I couldn't fathom why anyone would go for genetic testing, let alone something as extreme as going forward with a preventative mastectomy.  "You can have the gene and not get cancer, or you could not have the gene and still get cancer, so why get tested?"  This was my mantra for years whenever the topic came up, and because of my family history, it came up often. Then, over time, my life changed. I became a wife and a mother, and my priorities changed.  Slowly, I started to reconsider. By the time I went for genetic testing, I was fully ready and prepared to get my results.  Even if they weren't good, I knew I would do anything to be healthy for my family. A mastectomy and oophorectomy were some of the many options I discussed with my social worker and genetic counselor, but they became the only options I was comfortable with. Also, I had already started to think about blogging as I prepared for my 40th birthday party bash. So had I not gotten the diagnosis, I would have had a hard time justifying the extravagant celebration!

And now for a quick update:

I don't know if any of my readers are actually keeping track of my appointments, but just in case, here is the latest: Once I was officially finished breast feeding, I returned to the breast surgeon so she could reexamine the lump that she had expressed concern about.  She said that it has softened, but she still wants to do a breast MRI, which will then determine the next steps.  Fingers crossed it is nothing, so that I can go ahead with the preventive surgeries on my terms. The other day I heard Sinatra's "My Way" and I broke down in tears. It is my one wish for the New Year - that I can do this My Way.