Tuesday, January 27, 2015

A Happy Ending?

If my journey over the past year and half was a movie, my life as I'm experiencing it now, would be the happy ending. It would start with the phone call from the surgical ob gyn that reported the perfect pathology results from my last surgery, followed by me breaking down in tears. Next would come the appointment with the breast surgeon where she declared she wouldn’t need to see me again for another year. The next scene would be a montage of all the celebrations of me turning 40, healthy and happy. A flash of me at a Billy Idol concert, snapshots of several nights of dinners and drinks with friends, and a dizzying whirlwind of my family trip to Disney World - all while some upbeat music plays, probably Iggy Pop's Lust for Life (figuring it's my movie and I'll have some say to make sure the music isn't totally lame.) Then the movie would end and the audience would feel satisfied with the feel good performance just delivered by Kerri Russell (as me) and Michael Rappaport (as my husband). I still have to work out the casting, but I'm fairly certain I would want Lena Dunham to write the screenplay and Judd Apatow to direct it. Surely, the audience would immediately report to all of their friends about the inspiring true story of Stacy Davidson Minicucci who tested positive for the breast cancer gene, bravely got (what she thought was going to be) a preventative mastectomy, only to find out that it ended up saving her because she had breast cancer after all.

And you know what? It would be entirely accurate, because in many ways it really was that simple. I am now on the other side, looking back - healthy - with a really positive future prognosis. I discovered what my daughter defined as my super power: I bounce back from surgery really quickly. I'm happy (at least most of the time) and much of what made my journey difficult, is now over. So there you go...a happy ending.

But not so fast...because this is real life after all, and not a movie, and life is dynamic and forever changing. In truth, after that phone call about the positive post-op pathology results, I did well up a little, but then I completely forgot to share my news with anyone for about six hours because I was focused on my daughter who was sick with an extremely high fever. So yes, things are back to normal, but normal includes witnessing someone close to me in pain. I'm left with an insane amount of medical debt, I'm kind of disappointed with the final appearance of my reconstructed breasts, I don’t have ovaries anymore, and my body is forever chemically changed. Yet in the end, I have no regrets about the decisions I made, and the process was easier than what I was prepared for.  So, while I know I that I have lots of good ahead of me, I am frequently reminded that life is an uphill battle. But thankfully, mine continues.

In October 2013, when my journey and this blog just began, I tried to make sense of life through the Lou Reed song Magic and Loss. Fifteen months, three surgeries, and one cancer diagnosis later, I return to where I started. "Theres a bit of magic in everything and some loss to even things out." And so it has been for me.

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.