Category

Mastectomy

Why You Should Never Ignore Your Intuition

I’m sitting in a dimly lit massage room, waiting for the masseuse to come back. A large clap of thunder explodes outside as the lights start to flicker between varying degrees of brightness. Aren’t massages supposed to be Zen, relaxing? This feels like the start of a horror movie. Oh God. How do I leave a note for somebody to please relocate my body to a dressing room at Neiman Marcus instead of the Massage Envy in a shopping center?

My thoughts are interrupted when the door opens. It’s the masseuse lady; she’s holding an iPad, reading over my health questionnaire I filled out moments ago. She has a slightly puzzled, sad look on her face as she reads about my colorful life as told by yes/no/fill-in-the-blank questions. It’s the same look I always get when people see that I had cancer: long puppy dog face.

I smile in an attempt to disrupt this pity party. “Yeah I had breast cancer, I’m fine now. Do you have one of those boob-pillow things? I can’t lay on my stomach very easily with these foobies.” The conversations that follow are predictable. The first question is almost always: “How did you know you had cancer?” Well, I didn’t know. I think that people ask me that because there is a preconceived notion that breast cancer makes you feel sick or it hurts. Like when you know you have a cold because you’re coughing and sneezing. Anna says she assumed that cancer made you feel sick, and that it mainly only happened to older, unhealthy people. Right now, take all those ideas you may have about who gets cancer and bury them. Let them be as dead as Juicy Couture tracksuits.

For two years I unknowingly had cancer. It was 2013 when I discovered that pea-sized lump. I sat paralyzed on the couch, Googling breast cancer for hours as waves of fear washed over me and made my body numb with anxiety. My intuition immediately told me I had cancer. I begged my gynecologist to squeeze me in for a sonogram. After the breast sonogram, I got a call from a very chipper woman “There’s nothing there, you got all worried about nothing!” Her voice was filled with phony enthusiasm, like saccharin and crushed Prozac. But I craved those reassuring words so much that I swallowed every promise she told me and buried the fear deep inside. After my second sonogram 6 months later, and again at 12 months I was told “You’re fine!” Did she really think I was fine, or did she just brush me off as a 28-year old hypochondriac? Was I crazy to question her about why a non-cancerous tumor was getting bigger? Why didn’t she recommend a biopsy? We trust these people with our lives, but in reality they don’t enjoy unearthing bad news just as much as we don’t enjoy hearing it. Maybe that’s why she didn’t dig, and neither did I. I now realize that a framed piece of paper saying that someone is a doctor will never trump a gut intuition.

Finally, I went to a different doctor who biopsied the lump, and well, you know the rest. I guess I had to grow a backbone and stand up for my intuition. It was either that, or start digging myself a grave. I could have buried my head in the sand, and listened to my doctors who all told me that I couldn’t get breast cancer because I was too young, too healthy, and had no family history of the disease. I’m not saying don’t listen to your doctor; I’m saying listen to yourself first and foremost and find a doctor who agrees.

I’m sure I’ll still get asked all of those questions a thousand times more, and I’m happy to answer them. But please educate yourself on the signs and symptoms of breast cancer. It could just save your life.

Namaste, ladies.

A Surgery Guide from Your Breast Reconstruction Sherpa

Get ready betches!

It’s no secret that I’ve had a few surgeries in the last two years (eight!). I guess you could call me a professional surgery-taker, a mastectomy aficionada, a reconstruction sherpa. Well, I’m here to share some of my do’s and don’ts of surgery so you can plow through the ordeal like you’re Michael Phelps at the Olympics.

If you don’t have breast cancer, you can still use this surgery guide because it mostly applies to all hospital procedures.

Be prepared before surgery. This is the most important point. I had major “chemo brain” once and forgot to pick up my prescriptions, pre-register at the hospital, check the time I needed to show up, set out extra clothes for changing at the hospital, etc. The morning was absolute chaos, and I spent the majority of it running around like I was being chased by a swarm of wasps. Take a few hours the day before your surgery to take care of business.

Get to know the nurses and hospital staff. Be kind to them, they literally have your life in their hands. Being nice goes a long way: an extra pillow and more attention.

Get comfy. You need to be prepared after your surgery with a cozy little recuperation spot at home. Do this ahead of time. Have your pillows, blankets, meds, books, etc. all in your little recovery nest so you can lie down and go to Sleepytown once you get home. My lifesavers after surgery were a neck pillow (those ones you wear on airplanes) so you can sleep sitting up and a back scratcher. The scratcher may seem ridiculous, but pain meds will make you itchy, and when you can’t move your arms very good, it’s torture. I also recommend a pad of paper so you can write down when you take your medication. Plus, you may want to send out notes via carrier pigeon or fly paper airplanes at your television, because why not?

Listen to the doctor’s orders. When you’re discharged from the hospital, you’ll usually be given a packet of papers from your doctor that look very unexciting. You need to read them! I’ve made the mistake of throwing them away once (because I’m real smart). The stack of papers will contain specific post-surgery instructions such as when you can eat, shower, return to work, go base jumping in your wingsuit, etc.

For a mastectomy, I have a few extra bits of advice. After surgery, you’re going to have drains that are sewn into your skin to collect fluid and blood. Yikes, I know. I suggest having a few dark-colored button up shirts on hand; that way you can change easily when you need to tend to the drains, and the dark clothing is for any spills. The drains will need to be pinned to your mastectomy bra, or you can buy little pouches that will hold them comfortably under your clothes, such as Drain Dollies.

The first surgery is always the most difficult, but I promise you it gets easier. You will have some setbacks along the way, but just remember that your pain and suffering are temporary. Happiness, joy, pleasure – these things do not leave behind a scar, but pain does because it is transformative. We grow and learn from distress. When I look down at my scars, I’m reminded of the torture that cancer generously imparts on the physical body, but I can’t help but smile because of the inner strength it gave me.

You’ve got this, ladies. Surgery is tough but we’re tougher. Now raise that back scratcher up in the air like a sword!

Namaste, pink sisters.

This article first appeared on breastcancer-news.com.

White Lies, Rainbows and Puppies

White Lies, Rainbows and Puppies: Sometimes We Just Need a Good Cry

Sometimes I get really sick of talking about cancer. I get sick of hearing my own voice, of talking about wigs and boobs, of posting photos of my chemo-hair updates with the inflated enthusiasm of an elf on crack. At times, I want to pretend that it all never happened. To never speak the word cancer again. To never write a single syllable or utter a single breath on the topic. Sometimes, my overzealous optimism becomes too full and embellished; it collapses beneath the burden of its own weight. It’s a difficult job to always be a cheerleader.

Sometimes I just want to talk about cat memes and tacos. Like, what’s cancer?

When a person asks about my cancer experiences, it can be an out-of-body experience. I am standing right next to this human who looks like me, watching her talk. “Chemo didn’t even make me sick. Me and my friends went out to a beach bar and drank vodka martinis a few days after my second chemo!” Remember that show VH1 Pop Up Videos? A white conversation bubble pops on the screen. “True Story: She had one drink, 8 days after chemo and had to leave the bar because she was nauseous and had unbearable heartburn! LOL.” That info nugget indicts me of my white lies. Of my cancer propaganda that narrates an altered story.

I will never outwardly admit that things weren’t all rainbows and puppies. It’s the big sister in me who is being intrinsically protective. I’m hiding the callous truths from my friends and family who may get cancer at some point in their lives. I’m guarding my own ego. Because, as bad as things may get, I am the type who never will admit to it. It’s mind over matter.

As a cancer survivor, we all have a myriad of internal struggles about coming to terms with what we’ve been through. Everyone will say “You’re so strong, you’re so brave.” In truth, we don’t feel that way. We try to act fearless for everyone else’s sake. Brave? Me? Bravery is when you run into a burning building to save a baby. We’re not running head-first into cancer. We didn’t choose this. We’re running head first into survival. And it can be exhausting.

So, forgive me and forgive us, when we’re not always standing tall with our hands on our hips and projecting a rainbow beacon of bravery like a pink Care Bear. As much as we wish we were a magical cartoon with superpowers, we’re mortal humans who still put on our unicorn yoga pants one leg at a time.

So, if you’re a friend or family member aboard this ugly rollercoaster with us, just know that sometimes we just want stillness. Sometimes we don’t want to talk about cancer like it was an educational summer camp we attended and came home adorned in badges and medals. Sometimes we just need to hide in a closet and cry.

We are grateful and happy to be alive, but it’s equally gratifying to occasionally have a good ugly-faced cry and think about how far we’ve come. We recall those little white lies that we told our friends and family, “Oh, I feel great! Surgery was a breeze.” Because, unless you’ve been there, you’ll never be able to handle our horror stores of physical pain and aching despair.

But we know the real truth. The stories we tell others may have a fake sparkly tint to them, but it’s not without reason. We rewrite them to selflessly protect you. And that’s what I believe makes us brave.

*Article first published 4/28/17 at Breastcancer-news.com by me, duh. 

Advice to the newly diagnosed

Advice to the newly diagnosed

Recently, I had a close friend who was diagnosed with cancer. This was actually a first for me. This is a real life friend who has cancer – like, not a friend who I met on social media after my diagnosis. I have plenty of friends who have fought cancer, I just haven’t met 99.9% of them!

(Side note: My social media cancer friends — can we all get a cancer conference together? Or maybe we all just meet in one city and go out for a weekend where we drink cocktails and look hot AF and show the world that cancer doesn’t have shit on us?!? Seriously, I think this needs to happen.) (Update–We’re also burning our wigs in a giant bon fire.)

Back to the main topic – I told my friend “welcome to the club!” because he’s now my cancer buddy! Also, he’s the same age as me so he’s joining the young cancer club which is an elite few 🙂

So we pow-wowed a bit and talked about cancer. He told me that his diagnosis was very eye opening, because before it happens to you personally, you kind of tend to make broad generalizations about cancer. When I say personally, I mean either YOU have cancer or your close family/friend does. And when I say “broad generalizations” I mean that most people don’t know jack shit about cancer. The unknown is what causes panic, fear, anxiety. The panic causes us to Google. The googling causes us to panic more.

So in light of our realization that most people don’t know shit about what it’s like to have cancer, I wanted to share a few things. For the newly diagnosed (whether it’s you, a friend, or family member) 7 little tidbits of advice and what to expect — because I wish that I had somebody who told me these things.

  1. First of all, when you’re first diagnosed you’re fucking scared. (Duh, you know that) You basically start planning your own funeral.
    I want everybody to wear white, not black, drink vodka sodas, eat Royal Farms chicken, and have Elton John play Tiny Dancer. Oh, and blast my ashes into outer space in a pink sparkley rocket.
    As cool as your funeral plans may be, just stop it. You probably went on the internet and found the worst-of-the-worst cancer diagnosis scenario and are now convinced that you’re going to die. Stop it. Step away from the Google machine. Questions? Call a doctor, not WebMD. The internet is not your friend; the internet is the boy in 2nd grade who stole your Lunchable.
  1. Secondly, Cancer is (usually) more emotionally taxing on your loved ones than it is on you. Why? Because YOU (as the cancer patient) know that you’re inherently going to be fine. Sure you will freak out at first, but eventually, after you have sat with the doctors, after you know what a PET scan is, you know what your options are. You already threw those imaginary funeral plans in the invisible trash because – guess what— today more people are living from cancer than dying. But most people don’t really seem to grasp that. Especially your crazy [insert emotionally unstable relative here] who is so completely incapacitated with worrying about you that you find yourself always calming them. HELLO?!… This crazy relative doesn’t have cancer, but that doesn’t stop them from hyperventilating in Home Goods because they found napkins with pink breast cancer ribbons on them.

    So the neurotic relatives are one thing — but whoever your caretaker is during this time (husband/wife/mom/etc) — be extra nice to them. It’s the hardest on these people. They may not be the ones that are sick, but they see you at your worst. The burden that they carry as your lifeline during your darkest hour is heavier than they are ever obligated to endure. It’s an emotional crusade to stay strong, to be the rock, to tell white lies to family when they ask how you’re doing (Doing great!). When really… you spent the past two nights throwing up like you did in your high school/college party days after you drank enough “jungle juice” to drown an elephant. The caretakers are our unsung heroes.

  1. Third, prepare for a shitstorm of questions. You’re going to get questions and comments from anybody and everybody you’ve ever met (like that annoying girl you sat next to in freshman Poly Sci who now has enough babies to start her own little league team), and they are going to be so stupid/invasive/absurd that you’re going to whisper to yourself “whatttt the fuuucck” more times than you can count. Because they will ask things like: “Oh, so I guess now you can’t really have kids, because you can’t breastfeed right?” I’m not sure this person knows how a baby is born. Perhaps an anatomy lesson is due. “So what does cancer FEEL like? You could feel it right? It hurts?” If I could feel cancer… I would have been diagnosed a lot sooner, ya genius. I had a tumor, and yes I could feel that, but cancer doesn’t really have a feeling. Its symptoms are rarely noticeable which is why it goes undiagnosed in most people. “Oh you’re not going to die, the prognosis is good, right?” Just… never, ever ask a cancer patient about their life expectancy unless you are a doctor. Well, even if you are a doctor, you’re still running a high chance of getting crane kicked in the face because nobody wants to talk about an appraisal of their time left on Earth like we’re chit chatting about sports statistics. If they aren’t talking about it, don’t ask about it. Don’t mention dying. Ever.

    So like I said earlier… please understand that most people are just misinformed, not malicious. Think about it… before your diagnosis, did you know that there were different combinations of chemo? Did you know that not everybody needs chemo, and that not every type of chemo makes your hair fall out? Did you even know what radiation is?

    I admit. I didn’t know any of this. In my stupid brain I thought that people who got cancer usually died, or else it must not have been that bad. I thought that there were “good kinds of cancer” that were easy and similar to getting a virus treated with a Z-pack. I thought that people got cancer as a result of living an unhealthy lifestyle. Wrong Wrong Wrong.

  1. Fourth — know that no matter what kind of cancer you have/had… the psychological effects remain the same whether its stage 1 or 5. Maybe you had stage 1 and the cancer was removed with minor surgery and no further treatment. Maybe you had stage 4 and cancer riddled your bones and the crevices of your insides. The self loathing and guilt that comes with a cancer diagnosis can be crippling. It fucks with your mind. Why did this happen to me? Was it because I [insert any bad vice/behavior here]? Did I cause this? Too much bacon? Not enough green tea?
     
    You will constantly ask yourself “Will it come back again?” With a cancer diagnosis, you also get the pleasure of the grim fucking reaper snagging a permeant home in your subconscious. This grim reaper visits in seasonal times. He’s lounging next to you at the pool or standing across from you at the bar waving — as a friendly reminder that  you could die. “Howdy ho neighbor! Just here to ruin your day!”
     
    The fear of cancer returning. The anxiety of it recklessly colonizing and disabling your body in an unexpected homecoming. It’s a paralyzing thought that can hit you at startling moments. Death stalks you.
  1. You don’t have to tell everybody. Refer to point 3. It’s up to you. I thought I had to tell everybody. You don’t, and not everybody needs to know you have cancer.
  1. Time will fly during this scary period in your life. Which is good. It’s not one of those times you really want to “stop and take in the moment” like they tell you at your wedding. Your diagnosis will be a flurry of appointments and treatments. You’re constantly looking towards the next date on the calendar, next doctor, next chemo, next follow up. Before you know it you’re sitting here 1.5 years later with actual hair on your head, eyelashes, and new boobs. If you had chemo like I did, you’ll probably not remember a lot of the specifics during the hectic times (chemo brain – see previous post). The memories will float in your brain like a clouded drunk memory. Pretty neat-o!
  1. You’re going to be okay. Cancer taught me that even if I do…die…someday from cancer… that will be ok too. I’m not afraid to die. It will make you brave in weird ways you can’t understand. It makes your family brave. It makes relationships stronger. It makes your faith stronger. You’re going to be fucking fine! Calm your tits.

If you’re newly diagnosed, or just have questions feel free to ask me. I have plenty more unsolicited advice! Even if your questions are weird and hopefully just mildly offensive that’s fine too. I want to educate people. There are too many things that we don’t ask or don’t say to each other because we’re afraid or embarrassed. Get over it, talk about it. Put an end to this stigma that cancer is a death sentence or that it’s contagious (oh yeah, forgot to mention I’ve heard that question too).

Be nice to each other, stay healthy. Ciao betches.

It could never happen to me.

Everybody thinks that it will never happen to them.

Cancer is a shady bitch like that. Imagine you’re just jogging (or walking) along your usual proverbial path… it’s such a routine that you could probably do it blindfolded. Except this time you slam into an elephant. “Wait, how the HELL did I not see that elephant?! Elephants aren’t even native to this country, why the fuck is it here?! Hello did somebody lose their …um… pet elephant?” You had your head down and you were flying down the path like a loose puppy with your ears flapping in the wind. You never expected to run into an elephant because, seriously, that only happens on an African safari or something right?

That’s exactly how cancer is. You didn’t see it coming, you weren’t looking for it, and you NEVER thought it could happen to you. It happens to other people maybe, but not you. You’re heathy and you’re heading down your path full speed into life’s bliss. Just heed my warning betches and don’t be naïve and dumb like I was.

Over two years ago I started following a girl on Instagram who was 24 and had breast cancer. I remember once I found her I was paralyzed on the couch, stalking her pictures for about an hour saying “what the fucccckkkkk” about a hundred times under my breath. As I scanned over images of her bald head and scarred body I remember exactly how I felt; terrified, horrified, amazed, despondent. How could somebody so young have breast cancer? In my lifetime, the few people that I knew who had cancer were older; in their 50’s and beyond. I couldn’t imagine being a young girl and having to put your life on hold to FIGHT for your life. I was even terrified to have my blood drawn (I used to pass out) so I couldn’t comprehend going through chemo and multiple surgeries. I was completely heartbroken going through her pictures. But as I continued to follow her story I realized that she was not sad or miserable, she was optimistic, happy, grateful. Amazing! How could somebody who has been dealt a shitty hand of cards in life be so content and cheerful?
Keep reading…

I know that God was looking out for me back then. Somehow in the divine tapestry of the universe I found her Instagram account and was given a foreshadowing into my own future. Of course, I had no idea back then, but now I am certain of this. When I was diagnosed, I remembered her and it helped me to know that I wasn’t alone, and that I needed to be optimistic and unafraid. At the same time I discovered her Instagram, I had the small lump in my right boob. Even after seeing the 24 year old girl with breast cancer, I was still disavowed with the notion that I might have cancer also. I used any excuse available. “Well my doctor said it looks like a fibroid, and so I trust the expert’s opinion.” I didn’t trust the gut feeling that was nagging at me. Also at that time, my mind was clouded as I was divorcing my ex-husband so I didn’t even have a spare brain cell left to consider the possibility of cancer. I was just certain that those things don’t happen. Nobody gets dealt a hand that includes an unfaithful, narcissistic husband AND breast cancer at 28. That shit DOES NOT happen… right?

Well, whatever boo-hoo it happened. I tripped over the elephant because I didn’t believe that elephants existed. I ignored the signs. I didn’t listen to my body or my intuition. My point is: don’t let that happen to you, safeguard your life. You can still run full speed ahead, like I am doing, just keep your head up and pay attention to the signs along the way. If you have family members who have cancer, you especially can’t think that it couldn’t happen to you. My father’s side of the family carries the ATM genetic mutation, which we only recently found out in light of my cancer diagnosis. I’ve encouraged them all to get tested for this mutation. If you carried a cancer gene wouldn’t you want to know so you could prepare and defend yourself from this horrible disease? I wish I had known before it was too late, because now I’ve lost my boobs and my hair. So please don’t be naïve and think it can’t happen to you, cancer can happen to anybody. Please visit your doctor regularly and speak up about any pains and issue, no matter how small. And please for the love of God get a mammogram if you’re over 40 and a biopsy on any breast lumps no matter how old you are. Either way, when you get those results you’ll either be relieved that you’re in the clear or relieved that you’ve caught the cancer before it can do any damage.

Also, the Instagram profile was @NalieAgustin if you’d like to follow her!