when it rains, it pours (champagne)

I had a completely different blog post set to go today… and in line with the theme of my life (and the original post), sometimes things don’t go as planned. Sometimes life takes a 180. Sometimes it’s good, sometimes it’s bad. Today, it’s good.

The results of the Oncotype DX test came in today: LUCKY 7. A great sign that I’ll likely just need hormone therapy, and not chemotherapy. All of my limbs are crossed for good luck. I see the first oncologist on Monday and will know more once I have expert opinions.

I also visited the plastic surgeon today and he took out my last drain. Another rainbow of awesomeness. It wasn’t quite ready to come out, so I go back tomorrow to make sure nothing is pooling in my boob, which the PA called “juicy.” That’s right, gurl. They always were.

The last week and a half has been tough, and when things get tough, you start to weaken. Hence, the original post below, written before the universe decided to throw me a bone. The original post will have you wanting to slit your wrists… I know how you all love a good cry, so I kept it, because it’s necessary. Grab a glass of something and read it with a smile, and a sob, and a few more smiles.

This post is dedicated to my Duanester. He’s already seen this post. He said it was good.

Duane has made me (and some others) want to punch him in the face many times in the last year. I’m sure he’s wanted to do the same to me. I’m sure a lot of times I deserved it. But we’ve also shared so much love, memories and ridiculous inside jokes for the last five years, and I know the universe put us together for a reason. There are no coincidences in this life.

This is Duane and my all time favorite song. We were both shocked to learn that when we first met #LoveAtFirstSight. I always thought, this would be a very weird wedding song. I didn’t realize I wouldn’t need it for a wedding. I’d need it for this memoir. It makes perfect sense.

Love you my Duanester. You were tough to put up with someone like me. Always keep it in the middle ❤

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ORIGINAL POST: “the struggle is real”

Anxiety is a motherfucker. I’ve felt it inside my chest, and inside my head, steadily since June 1.

It’s crazy the power of the mind and its ability to physically take over. It’s actually impressive how strong a hold anxiety can have… how it can leave you paralyzed and absolutely terrified.

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I’ve always suffered from work-related anxiety — my mind races, I get nervous about a big presentation, I anticipate next day challenges, I know I have to wake up extra early and don’t want to be late, so I barely sleep at all… it’s all pretty standard, for anyone.

The anxiety I’ve felt since June 1 has reached a whole other level of crazy. It’s not just related to having breast cancer, or the struggle I went through to get diagnosed, or the latest development that it’s apparently invasive.

At the same time I was battling doctors to figure out what was really wrong with me, my entire world literally flipped upside down and fell all over the floor. Now, post-mastectomy, I’m dealing with the fall out of ALL of it. It’s this bigger picture of my life right now that prompted me to start blogging in the first place.

In June, I wasn’t just diagnosed with DCIS unexpectedly. After months of discussion and effort, my boyfriend of five years, a man I love dearly and planned to marry, Duane, also moved out of the house we shared and we ended our relationship.

YUP. You just read that. Full disclosure, he’s already read this post and fully supports it.

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I will not share personal and private details about my relationship with Duane and why we decided to part ways. The moral of that story is simple: sometimes (often times) love just isn’t enough. Sometimes things don’t work out the way you planned. But at the same time, love is powerful… and powerful love gives equally powerful anxiety a run for its money.

So to be clear, this post is not about what pieces of shit men are or how Duane is the root cause of all of my anxiety. It’s about what people who love you do to support you when you’re faced with the shittiest possible circumstances. It’s about how people show up when shit gets real — your best friends, your family, strangers and even your now ex boyfriend. It’s about accepting life as it comes, even as torrential as mine has been, and moving past the life you planned to allow room for the life that needs to emerge.

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It’s next to impossible to process with any kind of sanity a major break-up that happens at nearly the exact same time your second cancer diagnosis is handed down. I had no idea how to tell anyone I had breast cancer after all these years of being in remission. I was embarrassed to tell people Duane and I were breaking up, when the first question people would ask was, “How’s Duane handling this cancer nonsense.” I didn’t want to say the words. I didn’t want to tell this story a thousand times. I didn’t want to look people in the eyes and watch them crumble. And I didn’t want people gossiping and assuming things behind my back. So in all honesty, I can count on one hand how many people knew what was going on with my health and with Duane.

I’m grateful that despite many difficult relationship conversations, Duane was with me every second through finding out I needed to have a biopsy, while I was on a business trip all alone in Las Vegas and far away from any source of comfort (I did end up spending the afternoon at this spa, it was necessary). I’m grateful he insisted on driving me to have the biopsy on May 1, even though plans were in place for him to move out and I was trying to shut him out. I’m eternally grateful he persistently checked up on me after every doctor appointment, particularly my June 1 appointment that I expected would be very standard and turned out to be everything but standard.

I’ll never forget that day… June 1 was the day anxiety kicked break-up sadness aside and grabbed a hold of me hard. All of a sudden, I didn’t have any time to be sad about my break-up. I simply needed every best friend I had, Duane being front and center. Just because you break up doesn’t mean you don’t show up.

My mother and I numbly walked out of Dr. B’s office into a gloomy, drizzly, grey parking lot (how appropriate). We sat in the car for a few minutes to figure out, what now?? Do I go home with her and face my poor dad? No way. Is she actually going to let her daughter drive two hours home alone to Beacon, to a house once filled with love and now filled with petty arguments? Apparently yes… she didn’t really have a choice, although she did try to convince me to let her come. I needed to be alone. I needed a good drive. I needed the old comfort of MY home. I needed to cry ugly and loudly by myself, while listening to the saddest playlist ever. It’s a girl thing. I did talk to my best friends Jackie and Colleen from the car on the way home. We all cried together.

I got home, climbed onto the couch with my pillow and my old teddy bear Doc (my first teddy bear, a gift from when I had cancer the first time… yes, I’m in my 30s) and waited for Duane to walk in the door. And when he did, and looked at me in my swollen red eyes, and looked at the paper Dr. B had drawn on to describe my diagnosis and recommended surgery, he didn’t quite understand. And then I had to say it, “I have breast cancer,” and he fell apart with me, and grabbed a hold of me tight, like a best friend does.

And after a little while, we did another thing that best friends do… we ordered the fattest meal possible from our favorite local diner and sat in front of the TV watching DVR in pajamas for the rest of the night.

In the days that followed, June and the first half of July, I was truly manic. I’d had my cry and now had to kick into planning and execution mode. Time to get to work, bitch.

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I made lists of the things I needed to do in June and July: tell my boss/coworkers; research and meet with plastic surgeons; decide on which very complicated reconstruction surgery to have and prepare myself for months of physical therapy, recovery and perhaps a lifetime of not really feeling like myself again (holy shit); divide up the items Duane and I owned and clean the house that was now missing all of his things; get a handle on the finances and bills that Duane always managed for both of us; and importantly, reach a huge milestone in the skincare business I own: become a level 5 leader, a personal goal to make sure one good thing happened in June.

I insisted on preserving what was supposed to be the “Summer of Mary,” going to Maine with my family and visiting my brother and his family in LA… who knows when I’ll get to pick those babies up again. Really, I was adamant that the shit hitting the fan would not stop me from living life my way. And it didn’t… I just lived with a permanent tightness in my chest day and night, like I was carrying an elephant around all day long.

I couldn’t sleep in a house that all of a sudden sounded and smelled differently now that Duane was gone, so I either stayed up until the early morning hours starting projects and checking off lists, or I medicated myself to sleep. Regardless, I’d wake up with a start, early in the morning. My feet would hit the floor and I would go, fueled by anxiety, adrenaline and a feeling that time to get everything done was running out. I luckily had enough vacation days at work and was able to take the entire month of July off. I was a waste of space there in this state of mind anyway.

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I slowly started to tell my closest friends and family, and they flocked to me. They helped me clean and organize my house. They helped me feel normal, brought me wine, took me out, DISTRACTED me. They helped Duane wrap his head around this insane situation and offered him advice on what to do next. They planned an incredible party for me in NYC, HOLLApalooza 2015, to celebrate life and friendship and new beginnings. They bought me things they knew I’d need, that I hadn’t even thought of. They helped me start this blog. I’ll be forever in their debt. I have the best people in the world in my corner. I don’t think many people can say that and really mean it. A future post will be dedicated to my kick-ass posse.

This feeling of friendship and love only escalated and overpowered anxiety when I launched this blog. The response I’ve gotten has been ENORMOUS. Tougher Than TWOmurs has reached people I’ve never met, or that I’d lost touch with, and has fueled such incredible positive energy, which prepared me for the hardest part, my surgery. I’m convinced the only reason I left the hospital as soon as I did is because of the constant flow of well-wishes, text messages, Facebook messages, phone calls, that came in droves, distracting me from how shitty I felt and replacing the pit in my stomach with warmth in my heart. I’ll be forever grateful. It meant more than anyone could have ever known, and now you do. Duane showing up at the hospital and staying for two nights sealed the deal.

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It’s been exactly three weeks since I had my double mastectomy. Recovery-wise, my first week went so much better than I ever expected it would, but that doesn’t mean it’s been a walk in the park. The first few days and nights out of the hospital were tough. Thank God I had a crew helping me around the clock.

Showering, getting dressed and doing my hair are interesting experiences. Daily functions get a little easier everyday, but each new day brings a new complication in the recovery process… my chest muscles are spasming, nerves are angrily coming back to life and the pain and discomfort just take on new forms that I have to get used to all over again. It feels like I have two bricks sitting on my chest and lumps under each arm that create constant tension in my torso. Nights are filled with interrupted sleep (you just cannot get comfortable) and medication doesn’t really work. I cannot do basic things like open doors, pour myself water or sit up after laying down. The healing process is annoying as hell — I want to be better now, and instead I’m extremely stiff, can’t move my arms much, am forced to sleep on my back and am tired all the time.

I’m an independent woman living in her retired parents’ home again, and reliant, day in and out, on two people I haven’t lived with for over a decade. As incredible as my parents have been, and even though their home has been flooded with the kindest of well-wishes, flowers, desserts, cards, calls, friends, family, laughter and love, there is a hole… I long to be in my own home, with my best friend Duane, who knows exactly what to do, what I need and how to make me feel better, and it’s just not going to happen, nor should it happen. My life as I knew it, and loved it, is once again forever changed, and it sucks. That’s all there is to it.

That sadness I thought was kicked to the curb has now teamed up with anxiety and come back with a vengeance. It didn’t help to learn after week 1 that my journey with cancer is far from over. What. The. Fuck.

Duane was the first person I called.

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In this circular pattern my life tends to take, I had my day on Aug. 13th to cry and pity myself, and then I got to work. How am I going to plan each and every day from now through September, which doctors will I see, will they even SEE ME (let the hounding commence), if I need chemo, will I be able to travel or attend my best friends’ weddings in the fall, when am I going to harvest my eggs… I HAVE TO HARVEST MY EGGS?? I don’t even have a husband in my future anymore, when the hell am I going to use these eggs I have to pay thousands of dollars to harvest? What will the side effects of the hormone therapy be, am I going to turn into a man?

When the hell will I ever get HOME and back to some normality…

This tough bitch isn’t feeling so tough these days. I guess even superwoman needs a vacation every now and then.

I had no idea how to end this post on a more positive note. These last few weeks have left me pretty hopeless. So I asked Duane… and that’s what the silver lining really is. We may have lost the fairy tale, but we got to keep the friendship.

In this life, we ALWAYS have a choice. Wallow in the sadness, or accept what is and find the good in it. Have faith that once the air is cleared, the mind will be too.

And then find a hundred online memes that inspire you to just keep on truckin…

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i’m so sorry, ms. lewis…

I feel like I’ve heard this phrase, or a version of it, way too much in my life… “I’m so sorry, Ms. Lewis…” “I hate to be the one to tell you this, Ms. Lewis…” “I have some not so great news, Ms. Lewis…”

Life is so full of ebbs and flows. Mine is full of skyrockets and nose dives. This completely bipolar life of mine.

making me stronger

I’m writing this on August 13th, one week post-surgery, the same day I posted my last HI-larious tale about the things you really should know before having a double mastectomy. As I was putting the finishing touches on that last post, I was headed to see my breast surgeon, Dr. B, for my first out of the hospital follow-up visit. Based on how my visit with the plastic surgeon went earlier in the week, I expected to go in and out… I’d have one drain removed and planned to ask for gene testing, something that was offered to me back in June. My doctor and I agree that this isn’t about gene testing for the BRCA mutation, the notorious breast cancer gene. We’re both quite confident my breast cancer has nothing to do with BRCA. The truth is, nobody knows why I had Hodgkin’s Disease when I was 16, and I’m hoping if I get the gene testing, cancer research one day will be advanced enough that I’ll have some answers. If not for myself, then for my family, my siblings, my future children. I’m actually confident this is true. I’ll never stop searching for answers.

But that’s not exactly how my August 13th visit went.

Dr. B took me right in, she checked out my new boobs, she took one drain out, and then she asked me to dress and come to her office… that’s the sign, people. If ever you need to be prepared, when a doctor says, “Let’s talk in my office,” it’s usually not good news.

Dr. B didn’t bother to hesitate: “I hate that I’m always the bearer of bad news.” And my poor, unbelievable mother… her breathing. Trying so hard to be strong for me. Wanting this to be her, and not me.

It turns out the pathology of my breast tissue from the mastectomy showed that, even though all of my breast tissue is now gone, the cancer that was in it was in fact invasive. DCIS, which was my initial diagnosis based on my biopsy, is typically contained in the duct. There was a chance, and I was warned that this was low, that some microscopic cells could have floated outside of the duct… in translation, invading the tissue. Well, that low chance happened. Of course it did.

My new diagnosis: Stage 1A invasive breast cancer, requiring additional treatment.

My doctors are doing additional tests, an Oncotype DX test to be specific, to determine the potential risk of my estrogen-receptor-positive breast cancer coming back (recurrence). This will also give the doctors and I a sense of which treatment I’ll benefit from… hormone therapy, or hormone therapy plus chemotherapy. You can read all about how that test works and what it might tell me by clicking the hyperlink above.

And yes, you read that right… I may need chemo again.

If you ask me, I’m SURE I’ll need chemo again. That’s just how my life works. This link is giving me some hope, given the small size of my tumor (roughly 9 millimeters). Also, a sentinel node biopsy during my mastectomy came back fine, a good sign. No lymph nodes were removed during my mastectomy. I’m still preparing for the worst, because I have to.

As I learn more about this Oncotype DX test, I have to laugh, because there is a scoring mechanism that helps determine risk. Basically, if you score 18 or lower, you just need hormone therapy. Anything higher than 18 means chemo should be considered. The number 18 has been a significant number throughout my life. It’s my lucky number, it’s a number that pops up in so many things that I do… no doubt a sign from the universe… I’m going off on a tangent, but I never fail to see the irony.

There are no coincidences in this life. You gotta watch for the signs… life is so weird like that.

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Photo credit: Mattson Photographers http://www.mattsonphotographers.com/

The results of the Oncotype DX test won’t come back for a couple of weeks. In the meantime, I’ll be searching for the best oncologist and making additional plans that I was not prepared to have to make. I’m sure I’ll also be on the phone with my insurance carrier to argue with them about covering the cost of this test, which is several thousand dollars. This crazy circular life of mine… I’m in a constant state of deja vu, and not in the awesomeness that is Beyonce way (I couldn’t end my day without praising the queen… “don’t worry, be yonce”).

I’m encouraged that my breast cancer seems to be very treatable and survivable. Research shows a 5-year survival rate of roughly 98%, which is higher than what my Hodgkin’s was back in 1998 (I recall at the time, survival was 80%). This is GREAT news. I should be thrilled. Today, I’m just not. I’m fucking pissed.

I came home and started drinking (the perks of avoiding the percs, pain’s got nothin’ on me either) and finished my last post. If I’m going to blog, I will do so with integrity. Plus, I knew it would get you laughing, and this one would have you sobbing. Sorry. But let’s be honest, who doesn’t appreciate a good cry once in a while? My mom actually used to rewind this part of Steel Magnolias over and over so she could cry, over and over… again, the irony (Peg even looks like Sally Field).

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sad clown baby

Livid does nothing to describe my mood right now. But earlier I was just sad. I’m still so sad. I’m sad I have to deal with this nonsense, again. I’m crushed my mother has to watch me deal with this nonsense again. Her baby, her only daughter that she tried one last time to have and kept a secret for months from everyone, even my dad. My mother who told me on June 1 that she knew the day would come where the doctor would tell me, you have breast cancer. And she kept that to herself too, for 17 years, to spare my heartache and sanity, and told me how relieved she was that the day had finally come where we could just deal with it and move on, never worry about cancer again.

She carried it, and made sure I never had to.

And now that I have to, she’s broken for her equally broken daughter. What the fuck would I do without this remarkable woman? I always have to go back to how unbelievably blessed I am to have her here, making brilliant decisions and teaching me to do the same. She’s my rock. She’s the reason I came into the world and why I’m still alive today. There are no coincidences in this life.

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Tonight was the first time breast cancer ever made me feel empty. I knew I had to have a mastectomy, but I never felt sick. I wrote about how terrified I was to wake up feeling this emptiness, this concavity. I was relieved that I woke up from surgery to a whole lot of pain and pressure in my chest, because pain you feel. I’m wondering if that’s the reason I’ve recovered so quickly, pain feels real to me. Tonight, as I type this through my speedy recovery from surgery, there’s really not much physical pain left at all… I’ve mostly weaned off of narcotic pain killers, a huge feat in such a short time-frame. There’s just numbness, and weird sensations in the skin covering my expanders and in the nipples I so desperately wanted to save. It doesn’t feel good at all. It makes me want to jump out of my skin. All I want to do is fall asleep lying on my side, snuggled up to my little baby boy Sullivan. He’s been with me all night.

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I didn’t tell many people today (Aug. 13th), but I hand-picked the few who I’ve worked with in the past that can help me find the best oncologist and treatment, for me. I knew all of these years working in pharmaceuticals would one day come back to repay me. I have a team of badass bitches like myself already making moves and have names of 5 star doctors in my area. And you know why? Because as Tiny Fey would say, “Bitches get stuff done.” And the only thing I can do right now is use all of my fucking anger to absolutely demolish cancer. Dude, I am so much tougher than you.

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I went for a walk down by the beach tonight with my best friend Laura. When I got out of the car, a man on the boardwalk said, “You just missed it. It’s gone.” He was referring to the sunset.

He was wrong. There was still so much color left in that sky.

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“The Bluff” Kings Park, NY Aug. 13, 2015

And there’s still so much more fight left in me. I have to laugh that cancer actually thinks for one second I’m not going to ruin its life before it ruins mine.

Bring it the fuck on, cancer. You must have forgotten that I’ve done this before. I will OWN YOU.

You think you’re gonna stop me from living the life I’ve worked hard for and deserve? I’m off to the Hamptons with my best friends Cathy and Lacey to prove your stupid ass wrong.

Cancer, have yourself a nice little weekend. You best get ready for Monday, because shit’s going down.

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Lacey, Cathy, Mary @ Southampton Social Aug. 15, 2015

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the shit nobody talks about… literally

One week post-surgery. I. Cannot. Believe it.

There’s so much you plan for. So much you expect to happen and brace yourself for.

Then there are the things that happen which totally throw you for a loop, but really shouldn’t, because I’m pretty sure they happen to everyone who has a double mastectomy. For some reason, nobody talks about them.

And those are the kinds of things I LOVE to talk about.

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I’ve been good about keeping my peeps informed with little updates day-to-day on social media. It’s clear I’m continuing to recover swiftly. My mind is set on it. I’m doing the things I want to do and being very careful not to do the things I still can’t… but every day gets better. You GOTTA keep moving. A body in motion stays in motion.

But social media can so awesomely distort reality if you’re clever, and we all know too many people take advantage of that.

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I’m not about distorting anything. I’m about being real and throwin’ down some truth.

So here you go… get ready to laugh, and get ready to be informed. Here are the top things I learned over the last week that everyone preparing for a double mastectomy, or perhaps another major surgery on the upper body, needs to know (you’re welcome). I’ll start with the really good stuff first.

Drains
To be clear, everyone having a double mastectomy is prepared in advance that they will go home with drains. The type of procedure you’re having will dictate how many drains you get. Your physician should instruct you on how to care for the drains at home. You have to empty the fluid that the drains produce (blood and other nasty shit) and measure that fluid a few times a day. Once the output in a single drain is less than 30 CCs in a 24-hour span, the drain can come out. I left the hospital with four drains, two on either side of my torso. On Tuesday my plastic surgeon was able to take one drain out. Today I had another taken out. THANK F*CKING GOD. Drains are disgusting. The only people who disagree are nurses and family/friends who are lying because they don’t want to hurt my feelings. Sorry, it’s true… you be the judge.

(And an added bonus is that I cannot figure out how to adjust the static, ridiculous look on my face before you start this video. God and WordPress have the best senses of humor.)

On the real, you get used to the drains. They are very annoying, but probably wouldn’t be if you had full range of motion, which you won’t directly after surgery (keep moving). I have one drain underneath my right expander and it’s dancing on a nerve… certain moves make it feel like a hot poker is sticking me in the ribs. It’s excruciating, but there’s nothing I can do about it and luckily that doesn’t always happen. Your doctor will explain how to shower with them. They can get completely wet and my plastic surgeon gave me a belt to wear around my waist during the day/night with pouches for them, which was so helpful.

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too sexy for these drains

The drains are bulky, you see them underneath your clothes, so wear blousey stuff or if you’re fancy, shirts with ruffling on the bottom.

NEXT TOPIC… 

constipation

Here’s the thing… your doctors will tell you pain medication is binding. They might even tell you to start taking a stool softener a full week prior to surgery, which mine did (and I obliged). What they don’t necessarily tell you is that anesthesia puts your intestinal tract to sleep… FOR DAYS. I had 7 hours of anesthesia, which was 2-3 more hours than everyone originally estimated. Some mastectomies can take upwards of 12 or more hours (DIEP flap, latissimus dorsi flap). A small silver lining is, before surgery, your stomach is empty, and after surgery, you aren’t exactly shoveling food down your throat… that gives you SOME time for the anesthesia to leave your body, but that many hours can take a week or more. One particular nurse on Friday night asked me every hour if I’d “moved my bowels” and I nearly clocked her (Duane was ready to ask if she wanted to see his). Don’t talk to me about pooping when I’m still trying to learn how to PEE (it’s tough figuring out how to pee again, you really have to think about it).

So the whole “I can’t poop” thing got really old by Saturday night, which is when I started pulling out the big guns: extra stool softeners, prune juice, Miralax, all kinds of non-binding and fiberous foods (figs, fruit, veggies), COLONOSCOPY PREP, tons of water… none of it worked. No shit. I looked like I was 5 months pregnant and legit had more people than I’m proud to admit helping me and asking for updates (nothing is sacred, they were all genuinely routing for me). I eventually did something I can’t even bring myself to type, and it was like Moses parting the Red Sea.

I’d avoided my Percocet that day, so celebrated with wine. I earned that shit. It’s like when you have an infant and you pray for a poop.

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If you think this is TMI, I hate to be the one to tell you, you’re the minority. The poop emoji isn’t one of the most popular for nothing. Welcome to 2015 where everybody poops (unless they just had a double mastectomy).

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eating shit in a fabulous tank top on Aug. 13, 2015

PILLOWS

THESE ARE SO IMPORTANT. Women will appreciate this, men will hate reading this truth. There’s a reason why women have thousands of pillows on their beds and around the house… it’s because one day, they might have a double mastectomy, or someone they know will, and women help other women by giving them all of their soft throw pillows. I took this picture when I slept at my best friend Melissa’s house in early July so that I could use it one day to tease her… she is the queen of too many pillows (they’re all fabulous). I’ll never tease her again. #TurnDownForWhat

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my friend Melissa loves throw pillows…

Post-surgery, it’s incredibly difficult to move. You feel pain across your chest and down your arms. You need pillows to prop you up from behind. You need smaller pillows to put underneath your arms while laying in bed or in a chair (you want your arms elevated, level with or slightly higher than your body). Even better, put a pillow under your knees (my best friend Colleen taught me that). On your way home from the hospital, you’ll NEED a pillow across your chest so the seat belt doesn’t smash your sore body, and smaller pillows by your sides so your elbows sit higher. Soft and smushy.

The hospital let me take as many of their smaller pillows as I wanted (ask them when you’re leaving). I’m still using them at home. They sent me home with this heart pillow too, made by local women, which I love.

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outta jail on Aug. 8, 2015!

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Prepare Your Hair

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I’m the animal in this picture… when you’re having a surgery that disables you from being able to lift your arms to wash your hair, brush it or put it up, you must prepare. Millions of people are going to want to visit you, they stop by unexpectedly, and you won’t want to look like Phil Spector. Trust me.

When I was in LA prior to surgery, my good friend Julz gave me a new, safer keratin treatment and it has literally saved my life… My hair air dries after the shower perfectly straight, no frizz. It’s worth the money to have this done. Here’s where I went. The pic below is from Monday (don’t judge the soap stains on the mirror, washing my face was still messy at that time).

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hair did on Aug. 9, 2015

Button-Down Shirts, Zip-Front Sports Bras, Loose Pants

If it’s not clear already, you can’t lift your arms after having a double mastectomy. Putting a shirt over your head is next to impossible. The hospital may put you in a disposable surgical bra, they may not. Regardless, you will need zip-front or button down clothing so you don’t have to worry about putting things over your head. Even if you have help, getting your arms through something that goes over your head is excruciating. I have a ton of sports bras that I brought with me… I was only able to use two because they were stretchy, spandex material (gotta be able to stretch over your shoulders, cotton will be too tight). There were still a few moments where tears (sobs) were shed putting clothes on overhead. If your doctor doesn’t give you a good bra, or if you just want more than one, most sporting goods stores carry zip-front sports bras. Try Sport’s Authority, Dicks or online at Target and Amazon. You’ll likely need a much larger size than you are used to because you’ll be swollen.

Don’t wear pants that are in any way tight around the waist or need even the slightest tugging to pull on and off. After surgery, you cannot push anything, pull anything, carry anything or use your arms to push yourself up out of bed. No opening doors, no leaning on someone to get up, no reaching for things up too high. Everything has to be done using your legs and your core (I can’t wait to weigh myself when all of this is done). When I ditched my hospital gown, I’d luckily brought with me this ridiculous zip-up shirt that I wore in college to attract boys (sans the bulky drains, it looked hot once… if this shirt could talk). The nurses and doctors loved it. I knew there was a reason I save everything I once owned, forever.

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rockin’ drains like a champ in the hospital on Aug. 7, 2015 #LaterHospitalGown

But the pants I brought, normal stretch cotton gym pants, were difficult to pull down and back up to pee, again, something so simple becoming so complicated. You also feel like a jerk asking for help in the bathroom each time. The nurses are of course there to help, but once you’re up and becoming a more self-sufficient, they aren’t running in to help; they’re busy with other sicker patients (some of whom are extremely old, maybe delusional and others who just give the nurses a hard time). JUST be prepared, drawstring PJ pants might have been better.

So those are the biggies, but there are so many more things I encourage…

  • Tell people what you want and be specific. Don’t just ask someone (nurse or otherwise) if they can do something that would be helpful to you, and don’t take no for an answer. If the initial answer is no, insist on an alternative solution to your problem, a compromise. If you don’t get anywhere with the nurse, politely ask to speak with the supervisor/head nurse. This is your show, and while it may sound ironic, YOU are the only one allowed to say, NO. And if something doesn’t feel right, say so.
  • Get your core strength up prior to surgery, you’ll need it.
  • Sleepover buddies are important. My first night I had a wonderful nurse who came in on a very regular basis, every time I needed her, and she was competent. She felt like my partner. I felt safe. The evening nurses Friday night, and even some of the nurse assistants in general, had less than stellar attitudes, or were just nervous to make decisions. You don’t need someone being less than confident or aggravating you. You need an advocate. If you have someone who’s willing to stay with you, take advantage. Just prepare them they might not get much sleep. You can repay them in treats that will flood your house upon returning home.

Much love, my people! ❤

deconstructing reconstruction… what a hot mess

Big holla back to the creators and supporters of the pink ribbon movement. I work in public relations, so I geek out when something so simple raises international awareness. At the same time, as a cancer survivor, a woman and someone who’s spent her entire career in the healthcare/pharmaceutical industry (including breast cancer causes), I can’t help but feel shocked, and sort of naive, to learn how COMPLICATED having a double mastectomy is. Angelina Jolie failed to mention that part in her NY Times stories.

Encouraging women to be strong, run out and chop their tits off is empowering and brave, but it only scratches the surface… it does nothing to prepare women for what that entails. When you learn how crazy reconstruction is, the mastectomy almost seems like the easy part. Further, the success of your reconstruction depends a great deal on the talent of the breast surgeon doing the mastectomy. A plastic surgeon does the reconstruction. You literally have to find a dream team.

You’d have to be cold, dead and empty inside NOT to admire women who’ve faced this emotional, personal and terrifying decision, but now that I know what that decision-making process really looks like, my perspective has sky-rocketed even further. I’m going to tell you why.

I’ll start by saying, once again, I’m grateful my diagnosis is DCIS and not something more progressed requiring additional treatment. This diagnosis has given me the gift of CHOICES. Breast cancer patients, particularly those with zero body fat or who need chemo and radiation, have more limited choices. But, choices are a double-edged sword. All of them are hardcore, long procedures and in my opinion, none of them are great… likely the reason some women opt to forgo reconstruction altogether. “Great” would be never having to lose your own breasts. I’ve been blessed with a pretty awesome pair of large, natural boobs. They’re so nice, they’re a conversation piece, and have been for decades… HILARIOUS conversations, obviously. My friends and family will 100 percent attest to this. Go figure I have to lose them, but I won’t digress further. In short, I will (already am) mourn the loss of my boobs and my doctor has big shoes (boobs?) to fill.

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My best friend and old roommate Seana made these shirts for our other BF/roommate Jen when she was battling Stage 3 invasive breast cancer… being put to good use again (July 6, 2015)

I’m lucky I’m a candidate for a nipple and skin sparing mastectomy. This is important to me. I’ve met other women who didn’t have that luxury, or who didn’t care about that luxury. Call me crazy, but I’d like to keep what’s mine, if it’s safe to. I’ve had plenty of procedures that have left me with scars all over my body. Sure, scars are cool… they’re about as cool as having cancer. I think if most had the option to NOT have a huge scar on their body, or not have a part of it amputated, they’d take it.

Once I was diagnosed and started telling close friends, I was immediately connected with women who’ve had reconstruction. They told me about their experiences. They lifted their shirts for me and let me feel their boobs. Some of them had reconstructed or tattooed nipples and they looked amazing. The doctor can use skin from your thigh to create a nipple, and I think there are about FIVE people in the entire US who tattoo nipples well. Women travel hundreds, even thousands of miles to have it done. That’s a lot of work, and we haven’t even gotten to the actual boob yet…

The treatment you are having, or in my case, HAD, also impacts your decision. Radiation damages the skin and how your reconstruction heals. You can develop complications, infections, capsular contracture (scarring) and that can cause implants to look and feel like two tin cans in your chest. Those 14 days of radiation that caused my breast cancer could potentially impact how I heal from the mastectomy and reconstruction. I don’t know what Angelina Jolie or Christina Applegate chose, but for me and many others, it’s not at all as simple as removing my breasts and throwing in some implants, because if your skin is unhealthy, your body can reject the foreign object. You have to use body tissue to reconstruct completely, or to surround implants to protect them… and this is where things get interesting.

I took the entire month of July off from work to research reconstruction and met with several plastic surgeons, and I’m glad I did. The science behind reconstruction is FASCINATING.

I decided I want to look as close to “me” as possible. There are more options out there, but given my history of radiation, I was recommended the following options to be conducted IMMEDIATELY FOLLOWING my mastectomy:

  • DIEP Flap — This approach uses lower abdominal fat tissue, no muscle, to reconstruct your breasts. The doctor must perform micro-surgery to remove the arteries in the groin area which feed the fat tissue. Then, the arteries are reconnected back into the chest, so that they can continue to supply fresh blood to the fat tissue that is being used to reconstruct. AMAZING. The result is a very natural look and feel, lower risk of infection, and a “free” tummy tuck (yes, there are a few silver linings to having breast cancer). The cons: 8-10 hours (or more) of total surgery. Hugely invasive and highly complex (your doctor must be a PRO and the hospital staff must have an infrastructure to manage your recovery, not everyone DOES this). At least 8 weeks recovery with lots of drains. If you’ve never had children, you must consider that if you do in the future, your skin is now already stretched significantly. You need to have enough fat tissue for DIEP to even be an option. Depending on where your arteries are in your groin/belly, they may need to take some muscle, which means they replace it with mesh and you now have a risk for future hernias. And, you need physical therapy afterward.
  • Latissimus Dorsi Flap — This approach uses your back muscles to either reconstruct completely or wrap around an implant to protect it. In a nutshell, the surgeon cuts through your back muscle and wraps it around the front to your chest, along with any back fat you might have. I’m told this is the way to preserve the size and most natural feel. The cons: also an 8-10+ hour total surgery with lots of drains, intense physical therapy and what I have to imagine, and have been told by other patients, is a permanent impact on your future mobility (the back muscle used is what you use to twist your body). The result may look good, and I’m sure may patients do very well, but I have not spoken with any who have said they feel as mobile as they once did, even five years later. They DID say they spent two years sleeping like a mummy and unable to go to the gym — TWO YEARS.

So… WTF do you choose? I obviously said, give me a tummy tuck stat. Here’s the funniest part… my plastic surgeon discouraged me from the DIEP, because — get ready for it — I’M NOT FAT ENOUGH. I’m carrying around an extra person these days, thanks to my thryoid having been removed, but I don’t have enough fat tissue in my belly to construct breasts at my current size, which also means the likelihood of being able to save my skin and nipples would be low. They cannot take fat from multiple areas and no, they do not take donors  (everyone I know has asked, you know you are thinking it…).

My doctor strongly encouraged the LAT flap… and my heart kind of sank. I booked my surgery date, but with reluctance.

To give some context, I met with my plastic surgeon for the first time on June 5, still in shock that I even have to go through this. He was the first plastic I’d met with. I was in his office for FOUR HOURS. I walked out with Peg (my mom), she looked at me with excitement and said, “Isn’t he great?” I looked at her and burst into tears. Holy overwhelming situation, batman. What do I do now?

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after work on June 16, still trying to wrap my brain around this and battling major anxiety.

I decided then and there, I would not be convinced until I’d spoken with as many GOOD plastics as possible, and I started doing my research. I had plenty of recommendations from colleagues and friends, and I got to work researching who the top docs performing the DIEP and LAT flaps were, NOT plastics who primarily do cosmetic breast augmentation. I checked to see who had been featured in credible medical journals, credible news sources (US News & World Report, TIME, NY Magazine, and medical magazines). I stayed OFF of the Internet and didn’t troll random sites. I spoke with patients. Everyone — patients and doctors — had a different story, a different perspective and a different recommendation. This was helpful, it gave me ammunition and new questions to ask MY plastic, but it didn’t help me make my decision. And I was STRESSED.

I went back to my plastic on July 7, a full month later. I told him I was unconvinced the LAT flap was the right decision for me, that the thought of a permanent impact on my mobility was terrifying and begged him to prove to me why I should reconsider. He admitted, he couldn’t convince me… he understood my concerns… and gave me a third option… just go straight to implant… a whole month later… WHAAAA?

Then my interrogation started: What about his concern about my radiated skin? What about the implants hardening? Why was I only hearing this now? His answers were simple and made sense: “Mary, you have the BEST breast surgeon out there. I would not be recommending this if you were having your mastectomy by any other surgeon, I’d be telling you the LAT is your best option. I’m confident your breast surgeon, Dr. B, will make sure the skin envelope is pristinely managed so that you don’t reject a foreign object. You haven’t had radiation for weeks and weeks like other breast cancer patients, whose skin LOOKS radiated, burned, scarred and thin. Yours was only 14 days, 17 years ago… you will be fine and I’m confident this is the best option.”

And, I was skeptical, but believed him…

A week later I saw a brilliant plastic at NYU for an opinion, someone a good friend recommended (she’d done her breast reduction). She asked me what I’d been recommended. She IMMEDIATELY told me, straight to implant is what she’d do, and why the DIEP and LAT procedures were not optimal, for ME. Her reasons validated everything I’d felt, and had been told by my plastic. She ALSO said, there was only ONE breast surgeon in all of NYU that she’d recommend do the mastectomy, to ensure the least risk of complications. She also said she’d treated many patients just like me, who’d gotten breast cancer as a result of chest radiation due to Hodgkin’s Disease, and they’d done very well. She also said she knew and had studied with my plastic surgeon. And all of a sudden, I had peace of mind.

So that’s the decision that took an entire month to make: bilateral mastectomy and at the same time, my plastic will insert tissue expanders under my pec muscles. I will wake up with smaller “boobs” and go home with about four drains. I go back and forth to the doctor for the next 6-8 weeks and during that time, they inflate the expanders to the size I want to be. In about 3 months, I go back in for a quick in/out surgery where the plastic goes back in through the same incision, removes the expanders, and any scar tissue, and inserts the implants, which are wrapped in Alloderm (cadaver skin) to protect them from rejection. Yikes. This is happening.

The lesson from this long ass post: if you have a complicated and serious medical condition to deal with, DO YOUR RESEARCH. Don’t settle for a decision your gut tells you isn’t 100%. Ask questions, poke holes, and demand to know “what if.” When it comes to getting second opinions, do what you have to in order to get the appointments, LIE if you have to. I cannot tell you how many doctors would NOT see me because I’d already scheduled a surgery. Memorial Sloan Kettering would not return my calls. In fact, the admins I spoke with asked ME to call back daily, because they don’t meet patients for second opinions… “they don’t have time for that.” I’m sorry, but I didn’t realize meeting with a doctor at such a prestigious institution in NYC when you have breast cancer was the same as trying to get a resi at Del Posto for dinner. Shocking, but then again, everything happens for a reason.

Again, a lot to absorb. My surgery is Aug. 6. I’m mentally preparing (slowly starting to freak out). I’ll post once more before I go in. Much love.

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