What Having a Double Mastectomy Actually Feels Like

I’m 6 days post op from my bilateral prophylactic mastectomy (a fancy ass term for chopping off my tits preventatively) and to say this week has been one of the weirdest and most challenging weeks of my life would be the understatement of the year. 

Getting ready for this surgery, I was FREAKING out. I had no idea what to expect and when I searched around the internet to get some // any // kind of answers, I came up hella short.

So here’s my story. In hopes that if you’re searching around frantically like I was, you can find this post and feel less scared shitless and a little less alone. Or maybe you’re just one of my amazeballs readers who never misses a post and always wants to hear about what’s going on in my life, and this has pretty much been my life so here goes.

Fair warning: As always, I don’t keep things super PG and am honest AF about my own personal experience. So here goes...

Extra reminder: This is my personal experience. Everyone I’ve spoken to that has had this procedure has different ones to share. If you are thinking about taking action because you are BRCA +, check out some support groups and speak with other women who have been through this process as well. It was a super important step for me in my journey.

I have to say, in many ways, 2018 felt like the year of before and after — like everything was leading up to this one huge day, December 3rd, when I was finally going to be having my double mastectomy. Which for all you gals out there considering this/or rocking your previvor status already, my surgery was a DTI, OTM bilateral prophylactic mastectomy. 

DTI = Direct to implant. I was lucky to be a candidate for a one step procedure for a few reasons, according to my plastic surgeon — 1. I’m young, healthy and fit & 2. I wasn’t looking to go up a cup size. (Often, during the initial surgery to remove the breast tissue, expanders are put in in the place of implants for a few months leading up to a separate exchange surgery when the implants get inserted)

OTM = Over the muscle. This is in reference to where the implant is placed. Over the muscle is a pretty new way of doing things and, because of that, my surgeon was definitely more comfortable with under the muscle, but after speaking to my surgeons and my fellow previvors, I knew that OTM was the right decision for me so I MF advocated for myself and am SO happy that I did. 

Bilateral prophylactic mastectomy — double preventative (aka I did/do not have cancer) removal of both breasts. 

Anyways, back to the surgery itself. The idea of it scared the living SHIT out of me. I had only ever had one major surgery in my life and it was when I was 19 and got my tonsils removed, but that was something I wanted to do. This? This wasn’t something I would have ever made the decision to do without a good ass reason in my entire life. 

I mean, don’t get me wrong, I was never obsessed with my boobs. They were always farther apart than I’d have wanted and shaped a bit like pears (can ya picture it?), but I had never for a second considered getting implants. So many people would say things like “well, silver lining, you get amazing boobs!” — and I never saw it that way because I genuinely didn’t want them. Hell, I seriously considered going flat for a while but didn’t think that would translate well as a 20 something year old who is making a good portion of her career as an actor. Yup, entrepreneur, health coach, speaker and actor bitches! If you’ve been around these parts long enough, you already knew that though.

Anyways, my point is that major surgery was a pretty foreign concept to me. And I imagine it is for you as well. So I’m going to walk you through everything from start to finish with all the nitty gritty details — you ready, lets do the damn thing:

The day of...

My surgery didn’t start until 10:30 AM so I didn’t have to be at the hospital until 9:00. You’re not allowed to eat anything after midnight the night before which I thought would totally suck as I always have 2 breakfasts but my nerves actually killed any appetite I may have had.

Morning of, I got up and took some time for me to journal and do some light yoga which really helped me put me in the right frame of mind. I took a long shower, washed my hair (DO THIS) and rocked my surgical antiseptic wash (mine was called Hibiclens — don’t freak out when you open it and it’s MF magenta colored like I did), drank my required pre surgery apple juice and head to the hospital. 

When I got there, I registered and got set up in a private room to do all my pre surgery vitals and get my IV administered. I had to pat down my entire body with these cold wipes before putting on my gown — let me tell ya, the process was hella sexy — and then both doctors came in, chatted with myself and my support squad, and before I knew it, I was given my sleeping cocktail (which led to some seriously hilarious raw video footage of me thinking my body was a bowling ball and the bed’s rails were bumper cars) and whisked away to surgery.

And then I blacked out.

Literally. An entire 6 hours of my day was completely gone. One minute I was holding my husbands finger and the next minute, I was blinking half awake in the ICU saying that I was nauseous, and then blacked out again until I was in my room, surrounded by my support squad, with Coco playing in the background (‘cause they know how much I freaking love Disney). 

The rest of my hospital stay was pretty uneventful. I was surprised how low my pain levels were (2/10), I was allowed to have broth and popsicles for dinner (which let me tell ya tasted DAMN GOOD) and I spent the rest of the night/early morning watching movies, dozing on and off, talking with my support squad, taking meds (I wasn’t on any narcotics because they’d administered nerve blocks for the procedure which I was super happy about because my stomach does not do well with narcotics at all) and having my drains cleared by the nurses, who I freaking LOVED. Seriously, my team was incredible. Shoutout to the Northshore team at Evanston Hospital — I couldn’t have been more impressed.

Post op week...

Overall, I’ve gotta say, this experience has been way less taxing than I anticipated. I think the unknown/fears heading into surgery were wayyy harder than anything I’ve experienced post surgery and that was truly surprising to me.

After entertaining the hospital staff with my attempt to dance down the hallways on my evening and morning walk, I got the go-ahead from my doctors that everything was looking good and got discharged from the hospital.

I was a bit sore, almost like I’d done a really intense workout the day before and my shoulders, back & chest were taking the brunt of it, but I was so happy to be home and in my own space. I was allowed to take a shower 2 days post op which was THE BEST THING IN THE ENTIRE WORLD. Seriously, I never thought a shower could feel so good. I definitely was not able to shower on my own though so help is definitely a necessity post surgery. There is no way I would have been able to get by this week if it weren’t for my husband taking time off work to help me through this. 

I also saw myself for the first time since before surgery and I was expecting to look like Frankenstein and was SHOCKED at how good the girls looked just 2 days out — they were swollen and puffy for sure but wayyy better than I anticipated. Saw my plastic surgeon for a follow up 5 days post op and he was super impressed too! Everything has been healing well. 

The rest of the week has been filled with lots of resting, a few excursions (walks, a trip to target, pedicure, hair wash), watching a shiz ton of movies & tv shows, naps, and hanging out with my mom & dad who came into town for the surgery. 

While resting isn’t a state I’m used to being in for too long, and having everyone have to do things for me has been tough, it’s been such a wonderful way to really foster a new found sense of love for my body and everything its capable of. And it turns out, so much beauty happens when you sit back and allow everything to unfold as its supposed to.

I may have never expected to be here. I may have never wanted to have to make this choice. But it’s taught me so much more than I could have ever imagined.

And I know it’ll only continue to do so. 

Xo Amanda

Why I decided to get a Preventative Double Mastectomy at the age of 27

I've always known that whatever hardship came my way I could handle.

I'm strong willed and a hell of a fighter.

When I was 8, at overnight camp, I was bullied and literally thrown rocks at by the other girls in my cabin. 

When I was 10, I suddenly woke up in the middle of the night and unexpectedly couldn't walk and ended up in the hospital for 4 days with the doctors unable to diagnose what was wrong with me. 

I’ve struggled with body image, toxic friendships, losing friendships, orthorexia, the yo yo dieting binge cycle, anxiety, panic attacks, the works, and with self development and the right tools, I’ve overcome them.

But some things you just don’t feel like you can…

When I found out I was positive for the BRCA 1 gene earlier this year, I tried so hard to not let it derail me and have a total breakdown — to be “strong”. But the day I found out, I couldn’t keep it together. I ran to the shower and had a totally hot ass mess breakdown, movie style.

And it’s crazy to think that in 2 weeks, on December 3rd 2018, I’m going to have the official “previvor” status.

Yup, I’m chopping off my tits.

The decision to get a preventative double mastectomy was easy. I knew going into my genetic testing that if I found out I was #brca1 I would be going through with the surgery. (I didn’t WANT to, but I knew that’s what I would want to do given the circumstances.)

I could have gone the preventative screening route — which is a totally valid option! — but I know myself and I knew that I would constantly be living in fear.

Getting tested on the other hand? I put it off for years out of fear. But if there’s one thing I hope my journey with all of this shared is that knowing your predispositions is what gives you AGENCY over your HEALTH and your LIFE.

I’m grateful I know because now, I get to MAKE a choice. I get to stand up to cancer and tell it to fuck right off.

And that is a powerful thing.

Maybe you have a history of breast or ovarian cancer in your family and you can relate. Or maybe you are navigating your journey with a genetic mutation too. Or maybe, you are waiting to do something you know you need to do out of FEAR.

I’m here to tell you you’re not alone, my love. And that if you need ANYTHING, I’m always just a message away.

If you want to learn more about BRCA and my journey with it,

take a listen to this episode of the podcast.

I’ll be blogging more about my recovery journey and everything in between so if we’re not email penpals, be sure to subscribe to my email list to not miss a beat.

Your love & support means the world.

Let’s kick this BRCA gene in the goddamn tits.

Xo Amanda  

Why I decided to go off the birth control pill after 12 years

I know this is gonna ruffle a million and one feathers but you know your girl is gonna give it to you straight and this has been a huge part of my wellness journey 

This time last year, I remember sitting in a coffee shop with my friend Jen talking all about the birth control pill. She had decided to go off of it 6 months prior and was sharing her experience with me and it got me thinking ... "why have I been on the pill for so goddamn long?"

I mean OBVIOUSLY to not have a baby.

But the reason I went on the pill in the first place? I was 15 years old and my doctor misdiagnosed me with PCOS and said "here, just take the pill. It'll help your symptoms."

And she was right, it did. And I didn't question it (and hadn't questioned it until recently).

But that conversation got me thinking about how I've been putting synthetic hormones into my body for 12 years of my life without question ('cause ya know, everyone is on the pill, right?) and that I hadn't even thought to question it. 

And the past year, I've been going back and forth about it and out of fear of what would come of change, I never decided to make any shifts...until now. After all of the medical stuff going on with me and the incredible conversation I had with Claire Baker on episode 7 of the podcast and speaking with my doctor, I decided to officially go off of the pill. 

Now I want to preface this by saying this is in NO WAY a "you need to go off the pill" post. YOU are the only person that can make choices for YOUR body (and girlfriend, you 100% know what's best for YOU and where you're at in life), but I've been getting a billion questions about why I made this decision and what I'm doing now for preventative measures. 

So here is MY story based off of my personal findings, speaking with my trusted hormone experts, my doctor and MY BODY.

---

WHY I DECIDED TO GO OFF THE PILL

1. I'm hella health conscious (obviously). And after getting hella into nutrition, the body and how everything works, I realized how VITAL the health of a woman's' endocrine system (aka the collection of glands and organs that produce hormones) is for overall health. And I have been working so hard on implementing habits in my nutrition and day to day life to support this, but not my birth control method? My girl Jess over at Wholly Healed shares ALL about the negative side effects of going on the pill, so if you wanna learn more definitely check her out. 

2. When I found out I was BRCA 1 positive earlier this year, I was hell bent on doing everything in my power to arm myself with everything I could to prevent myself from getting breast or ovarian cancer. And I knew that certain pills have been associated with raising risks of getting breast cancer and I was NOT fucking around with that.

*what I didn't know? Being on certain BC pills like the one I was on (ortho trinessa or ortho tricyclen low) for upwards of 5 years can actually REDUCE your likelihood of developing ovarian cancer so that was a major WIN for me and my doctor. 

3. My gynaecologist recommended I make the switch. While I was pretty convinced through my own personal readings and speaking with hormone health experts, I also wanted to hear the input from my doctor and she gave me the green light immediately. 

OK SO I WANNA GO OFF THE PILL, BUT I DON'T WANT BABIES!! HALP!!!

I hear ya. Kev and I are NOT ready for babies anytime soon, so when we were looking for another option, we knew we still needed to have a form of birth control going .

Here are other some options other than the pill to consider:

Paraguard IUD  - this is the option I opted with for a few reasons.  

• It's over 99% effective in preventing pregnancy, making it one of the most effective forms of birth control available. This is hugely important to us because if and when we do decide to have kids, we have committed to going through the IVF process so we can screen the embryos for the BRCA gene. 
• It is hormone FREE. So your body goes through the ovulation process as it naturally would but the Copper IUD disrupts sperm motility and damages sperm so they can't join with an egg. Fun fact that I didn't know? Copper actually acts as a spermicide within the uterus, increasing levels of copper ions, prostaglandins, and white blood cells within the uterine and tubal fluids. Fun science facts for ya! 
• It is good for up to 10 years and can be removed at any time.

Condoms - also a great option! 

Withdrawl...not so fun but if you're in a relationship or sex isn't on the table, there ya go! 

Fertility Awareness Method (FAM) -- if you want to learn more about this, I highly recommend the book Taking Control of Your Fertility 

HOW DO YOU FEEL NOW ABOUT YOUR DECISION?

So far, I am OVER THE MOON about it.

I stopped taking the pill and transitioned to the Paraguard 2 weeks ago, so I've yet to experience a full cycle (and have yet to see if my period is going to return right away -- I know quite a few women who waited a year for their period to return) so I will definitely do a follow up post in a few months but so far, it's been great.

The process of inserting the IUD? It sucked. Majorly. And I experienced pretty awful cramping the rest of the day. The heating pad, aleve, netflix and my pup Toby were my best friends that day -- so DEFINITELY do not go into work after you get it inserted. SERIOUSLY. 

But less than 24 hours later later and after a nights sleep, I felt good as new.

I've been following the My Flo app to track my cycle and so far it's been pretty on track! No spotting, weird cramping or anything like that.

And just knowing that I've taken action about this has taken a huge weight off of my chest.

So there ya have it!

As always, you know I'm an open book so if you have any questions, pop 'em in the comments below! 

And I'm curious -- what form of birth control do you use? 

Xo Cheers to living our f*ck yes lives,

Amanda

What IS BRCA and how do I know if I should get tested for it?

Earlier this year, I found out that I am BRCA 1 +.

If you haven't been following my journey (blog/podcast) then you are probably like DA FUCK is BRCA? Or at least, that's how I was when I first heard of it.

In the past month, I've had so many of you reach out. I've heard stories of those of you who are BRCA + too, those of you who are battling breast cancer or are survivors, and a hell of a lot of messages from those of you who didn't even know it was possible to get genetically tested for something like this.

So I figured I'd put together some facts & figures for you guys based on my own personal research and what my doctors have shared with me. So please do your due diligence on your own and speak to your doctors to discuss if this is the right path for YOU.

THE FACTS 

SO, WHAT IS BRCA?

BRCA 1 and BRCA 2 are human genes that produce tumor suppressor proteins. When either of these genes is mutated, cells in the body are more likely to develop additional genetic alterations that can lead to cancer.

Inheriting the BRCA1 or BRCA2 gene increases the risk of female breast and ovarian cancers (although they have also been associated with several additional types of cancer). People who have inherited mutations in BRCA1 and BRCA2 tend to develop breast and ovarian cancers at younger ages than people who do not have these mutations.

HOW DO YOU INHERIT BRCA?

A BRCA1 or BRCA2 mutation can be inherited from someone's mother or father. Each child of a parent who carries a mutation in one of these genes has a 50% chance (or 1 chance in 2) of inheriting the mutation. 

When I was in college, my dad got tested and found out that he had the BRCA 1 gene. Most women my age that I've spoken to who know about the gene were urged to get tested after their moms or close female relatives were diagnosed with breast or ovarian cancer. I've only met one other woman (shoutout to my gal Ashley who just bravely went through a preventative double mastectomy) who has a similar story to mine. So if you have any history of breast or ovarian cancer on either side of your family, you may want to consider getting tested.

WHAT ARE THE RISKS INHERITED WITH BRCA? 

This varies depending on whether you have BRCA 1 or 2.

For BRCA 1:

• 60-80% risk of developing breast cancer over lifetime compared to the 12% general population risk.
• 34-44% risk of developing ovarian cancer over lifetime compared to the 1-2% general population risk.
• 2-3 % risk of developing pancreatic cancer over lifetime compared to the 0.9% general population risk.
• Increased risk in male breast and prostate cancer

For BRCA 2:

• 50-70% risk of developing breast cancer over lifetime compared to the 12% general population risk.
• 12-20% risk of developing ovarian cancer over lifetime compared to the 1-2% general population risk.
• 20-30% risk of developing prostate cancer over lifetime compared to the 16% general population 
• 7% risk of developing male breast cancer over lifetime compared to the 1.10% general population 
• 3-5 % risk of developing pancreatic cancer over lifetime compared to the 0.9% general population risk.
• 3-5 % risk of developing melanoma over lifetime compared to the 1-2% general population risk.

*stats pulled from the National Society of Genetic Counselors

WHEN TO CONSIDER GENETIC TESTING

• You have a relative with a BRCA 1 or BRCA 2 mutation
• Family history of breast cancer diagnosis at an early age (aka before 50 years of age)
• Family history of ovarian cancer
• Multiple generations with breast and/or ovarian cancer
• Family member has had multiple primary cancers 
• Ashkenazi Jewish ancestry (this one took me by surprise! I have Ashkenazi Jewish ancestry on both sides of my family)

FAVORITE RESOURCES AND SUPPORT

The Bright Pink Foundation -- A FANTASTIC resource to help you assess your risk and find a local group in your area for support. They also have a beautiful program called the Pink Pal where you get paired up with someone to help you navigate the process once you've found out you are BRCA + 

The Breasties -- a nonprofit organization dedicated to supporting young women affected by breast and ovarian cancer through community and friendship. They host events, meetups and retreats and I've had the pleasure of getting to know Paige, the founder, and could not be more on board with what she's doing and the community she's building. #breastie love! 

Facing Our Risk of Cancer Empowered (FORCE) -- education resource for more information and studies. Great resource!

So there you have it! 

Remember just because you KNOW this information doesn't mean you have to get tested. I waited 5 years and while in some ways I wish I had known sooner, I'm also grateful I waited because even a couple of years ago, I wasn't mentally ready to handle everything.

And if you ever need support, love or encouragement along your journey, know that I am always just a message away and I would LOVE to connect with you!

Xo Amanda 

Facing Fear Head On: A 20 somethings journey of being BRCA positive

FEAR.

For so much of my life, I let fear steer the wheel. 

I quit ballet after my first class because 3 girls made fun of me and I was scared nobody would be my friend.

I didn't ask the boy out because I was terrified he'd reject me and not think I was pretty enough.

I dieted and dieted in fear that I wouldn't be cast in shows because I wouldn't be "skinny enough".

Can you relate? 

The past 2 years of my life, I've been on an intense journey of self discovery and a huge part of that was facing fear head on.

I faced it head on when I broke the diet cycle once and for all, and healed my relationship with food and fitness.

I faced it head on when I decided to pay everything I've learned forward and become a health coach and join a tribe of incredible women changing the freaking world. 

I faced it head on when I took a good hard look at my debt, made a plan and in less than a year, paid off all my credit card debt. 

I faced it head on when I went shirtless on stage for the first time in my life and faced all the body love demons that had been a part of my life for so damn long. 

And heading into this year, I knew that it was time to face a fear I've been living with for a very long time. 

MY STORY 

When my dad was 18, his mum died of breast cancer at the age of 44. 

And growing up, I've seen how that loss took such a toll on him. I mean, losing a parent at all let alone at 18 years old is awful -- and something that I'm so grateful to say I've not had to go through myself. Because goddamn, my parents are my best friends and that's something even just thinking about breaks my fucking heart.

And all my life, I've had this little fear living at the back of my mind that I would have the same fate as my grandma. Call it intuition, call it gut, call it fear, it was super present in my world since I was old enough to understand it.

And that fear came to an all time high during my Sophomore year of college when my Dad got tested for the BRCA gene mutations (more info on all of this and real time reactions on episode 6 of the Live Your F*ck Yes Life Podcast) and found out that he was a carrier of the gene (and the only one of his siblings who is).

At the time, I didn't fully understand what that meant,  beyond the fact that I had a 50/50 chance of getting it, and honestly fear took over every ounce of me that I didn't want to know. I was 20 and the way I felt at the time was that knowing would just make it harder.

So I decided not to find out...until this year.

And you know what? Looking back, I'm grateful I waited.

Grateful because at the time, I was going through SO much internally that I think the information I knew deep down was true -- the fact that I also am BRCA 1 positive -- would have broken me in half.

Now, I'm 27, and while I'm still so young, I've lived a lot of life.

Hell, in the last 4 years alone, I've dealt with a binge eating disorder, orthorexia, planned a wedding, dealt with sudden onset anxiety, bought our first house, started my business, moved out of said home and lived in hotels for 6 months because of water damage, navigated job shifts and health issues with my hubby, started a podcast and beyond. 

And that's not counting all the odd jobs, shows, teaching gigs, travels, mentoring and everything else in my life. 

And while so much of it has been incredibly fulfilling and invigorating, a lot of my life has been filled with obstacle after obstacle -- as I'm sure yours has been too, because hey, that's what being a freaking human being is all about, right?

And while, at the time, those obstacles have felt INSURMOUNTABLE, here I am (and here you are) on the other side of it all, STRONGER for it and more self aware than ever. 

And I sit here, grateful for it all, because it gave me the courage to stop waiting.

To show up as a warrior in my life and put the worries to rest.

So yes, I am a woman living with the BRCA 1 gene.

I don't have cancer, yet. But the chance of me getting breast or ovarian cancer is high AF.

And while that in and of itself scares the SHIT out of me, I've never felt more empowered. Because I get to do something about it.

I don't know what that is yet, but you know I'll be sharing it all along the way, mess and all, 'cause that's how I freaking roll. 

And I'm so goddamn grateful to have you along for the ride.

Xo Amanda 

p.s. if you aren't in our Live Your F*ck Yes Life Community, come on over and join the convo. We're all in this together babe.