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.
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.
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.
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.
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.
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.
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).
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
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.
Prepare Your Hair
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).
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.
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! ❤