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.

ignore me

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.

perfect on facebook

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.

finally pooped

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! ❤

the element of surprise

I’m forever surprising myself. And life is forever surprising me.

When I blogged before my surgery, I was terrified. I wrote about how having a bilateral mastectomy resurrected this feeling of losing a part of myself, something I’d felt back when I was 16 and lost my hair because of chemo. I also wrote that all those years ago, when that gut-wrenching 5-minute experience with my mom shaving my head was over, I went back to my room, forced myself to look in the mirror, and was surprised… I looked good. I looked REALLY good. And the hardest part was over.

Last Thursday morning, as Dr. B wheeled me away from my parents, who could not hide their tears, and into the operating room, where I couldn’t hide my own, I grabbed my god-given, awesome boobs for the last time, looked at Dr. B, in her sweet, compassionate eyes, and I went to sleep.

In what felt like minutes, I was waking up. And the worst was truly over. Just like it was 17 years ago.

I expected to feel awful, 7 hours of surgery is LONG. I didn’t immediately feel so awful. The pain was very crazy, but I was coherent and drugged up. My mom and dad were on either side of me. I was cracking jokes, I couldn’t tell you what they were, but I know my parents, who love to act as if they’ve never heard or used a curse word in their lives, were half-laughing/half trying to pretend “she’s never like this it must be the anesthesia” (NOTE: I’m always like that). I kept asking my mom if she’d called my cousin Lauren, who was in charge of kicking off a phone chain to tell my closest friends and family I was out of surgery and recovering. More truthfully, I was demanding she call Lauren. She finally listened to me, and told Lauren, “She’s up, and she’s already ordering people around.” #ShesBack

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me and peg, just before surgery, Aug. 6, 2015
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me and MUR, just before surgery Aug. 6, 2015

When the nurses wheeled me into my room around 7 p.m., the first thing they did was check my vitals and my incisions. This meant they had to open up my gown and my surgical bra. I had no idea what to expect, but my spirits were up and I was feeling brave. The nurse said, you can look away if you want, and I said, “No fucking way.” (yes, I said the F-word). This was the moment of truth, how could I look away? Again, history repeated itself… the nurse said, “Just so you know… every nurse on this floor has boob envy.” And I understood why… my new boobies already look pretty fucking amazing. Holy cow. How do you spell relief…

More on the new boobs in a future post. Right now, most people are wondering, “So… how did you do?” Here’s how…

The first 12 hours post-surgery were quite possibly the most difficult of my life. I’m not really sure what “recovering remarkably” translates into, but I’m pretty sure I achieved it based on the reactions from the nursing staff, my doctors, my parents and my close friends. But for me, it also wasn’t like there was a choice. That’s how I’ve always been. Set a goal and shatter it. When you see a challenge, you tackle that shit… you move onto the next one, tackle that… wash, rinse, repeat. To me, this is just logical.

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I only spent two nights in the hospital. I expected, and was told, I’d be there through the weekend. I left Saturday morning, as early as possible, and literally walked through the halls (politely) hounding the nurses to give me my discharge papers and remove my IV. I’m sure they loved that.

bitchcraft

Truth be told, my nurses at Huntington Hospital on Long Island were incredible, and that made a lot of the difference.

But that first night was so tough. My parents left and I was lucky enough to have my own room, but I was in excruciating pain, withdrawing from the enormous amount of anesthesia, I was catheterized and had a button to push any time the pain was unbearable. The medicine coming out of the pump (dilaudid/hydromorphone) was making me barf despite very effective anti-nausea medications (Zofran and compazine). My mouth constantly felt and tasted like sawdust, I could barely keep ice chips down, so the nurses wouldn’t give me any food to coat my stomach. I had to choose between pain management and constant barfing… isn’t this the picture of true glamour?

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about 2 a.m. Aug. 7, 2015, dilaudid makin’ me grossie

I dealt with this for a few hours. I had removable oxygen tubes in both nostrils and compression cuffs on both legs to prevent blood clots. When you’re that uncomfortable, you just can’t sleep, and minutes start to feel like hours. I was antsy and my mind told me it was time to start moving, but my body wasn’t ready. It’s in those moments that you exercise mind over matter, like Uma in Kill Bill (wiggle your big toe). I knew the first big hurdle was walking, somewhere, anywhere. And at 430 a.m., I decided to try it.

believe

I’d been avoiding the pain pump, so my pain was high, but my stomach was cooperating. My nurse gave me a shot of Zofran so that when I went upright I wouldn’t lose my cookies. My teeth started chattering and my body started shaking as if it was hypothermic, a sign of anesthesia withdrawal and your body’s reaction to intense, uncontrolled pain. The nurse had me swing my legs to the left edge of the bed and helped me sit up… I got that far, gravity immediately settled in, and so did the weight of the 7 hours of tearing apart my torso… and it sort of resembled this. The pain was so incredible it brought me to sobs. The nurse urged me to press the pain pump until it stopped beeping (it locks you out automatically before you overdose). The pain subsided fast, the sobs took a little longer. I was out of breath, but the nurse was proud and supportive. First hurdle overcome. It hurt like a bastard, but it took all of a minute.

Next I actually had to walk. A huge wave of nausea washed over me (I def pressed the pain pump about 17 times) and I didn’t think I could stand. The nurse, in a way that only a brilliant nurse can, encouraged me by saying, “If sitting is all you can do, it’s more than you were doing a minute ago. We don’t have to go very far. We can sit here, or we can just walk a step or two to the chair and sit in it. It’s up to you.” A good compromise to walking out of the room, down the hall and back seemed like walking across the room to the sink, since I’d probably need to barf in it anyway. I stood up slowly. I waited, breathed away the urge to hurl, slowly walked to the sink and sucked on a few ice chips. I said, “That’s it, I’m good, please bring me back to bed.” Two steps back and I hurled into a bucket that the nurse got to me just in time. When I stopped, I wiped my face, took a breath and said, “OK, let’s go down the hall.” And the nurses BEAMED. They promised me, it only gets easier, and much easier, from here.

universe has my back

I slept intermittently into Friday morning, laying down was stiffening my entire upper body, but the nurses were right — things started improving quickly. And that’s because I kept moving.

Friday

The nurses brought me a bland breakfast, I ate half of it sitting in a chair next to my bed. Since I was eating and drinking, the nurse took out my catheter. I told them to get me off of the pain pump, and that meant they could also remove the annoying oxygen tubes. I started a new pain management cocktail and the compression bands on my legs came off. This was all within about 5 hours. I was feeling human again.

My best high school friends Jackie and Laura showed up, and they helped me get up, walk to the bathroom, I brushed my teeth (and did again probably a million times more that day), Jackie washed my face, they brushed my hair and helped me put it up. My cousin Lauren showed up and helped me ditch my hospital gown (it just makes you feel like a sick, incapable person walking around with a gown your ass hangs out of, let’s be real). She helped me into my real clothes. I was LOOKING human again. I sat up in bed, stood and walked a lot. I started stretching my arms lightly. My friend Laura came back that night with our friend Lysa. Nobody who visited came empty-handed. Everyone brought something I really needed: magazines, slippers, roll on antiperspirant (very important when you can’t lift your arms or feel your skin well), healthy snacks, light, soft PJs that would be easy to put on, the list goes on. I don’t know what I’d do without these girls.

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Best friends (357 crew): Laura, Me, Jackie and Lysa, Aug. 21, 2010
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my cousin Lauren, really my sister, and I in Aruba July 2009

Friday night, Duane stayed with me in the hospital. The poor guy barely slept and was so nervous I might break. He also brought me all kinds of things I’d forgotten that I really needed, helped me in and out of my bed, in the bathroom, with my hair, arranged pillows, carried things, drove me home to my parent’s house Saturday morning, ran to stores to buy stuff I realized I’d need, zip-front sport bras included (yes… for me, he was the creepy guy at Sport’s Authority way too early in the morning looking at bras).

The bottom line is, I did fabulously those first two days, and I never expected to. I owe this to the people who love me that showed up and helped me, physically and digitally. I had wifi the entire time (talk about something incredible to pass the hours I was awake). My social media notifications were in the several hundreds, as were my text messages. A lot of people couldn’t believe I was up and so active, so responsive. Many said I was an inspiration… you know what? The love inspired ME and distracted me from focusing on my pain. Love makes the world go round, and when you have a team of thousands routing for you, anything is possible. Saying I’m grateful does no justice to how I really feel to each and every one of you.

My parting words on this part of the adventure are, when you give love you get love. We can waste time worrying and contemplating and obsessing and jumping from one foot to the other, or we can set our minds to a desired outcome, say it out loud to the world with love and commitment, and be open to the possibility that things may not go as badly as we suspect. You MAY just be surprised.

Just like anything else in life, INCHES MAKE CHAMPIONS. Small steps turn into several steps. The time is going to pass anyway, you may as well be productive and working towards your goal, in my case, nearly perfect health of mind, body and spirit. And I wish all of that for you too ❤