Im totally supposed to be sleeping but I have a headache and my mind is going a million miles a minute! I received a comment on one of my instagram posts that has been really getting to me. Surprisingly, it was nothing really negative, but has made me extremely self conscious about my breast reconstruction. Since my reconstruction in December ive tried really hard to listen to my surgeons advice, wait the six months for my skin to heal and implant to settle, but now im just getting impatient, and for good reason id have to say!
The comment read, “Do you have different implants in both? Or just one side?” In essence this is a pretty valid question I guess because my chest does look crooked. But come on, why would I get two different sized implants? Anybody that educates them self on breast cancer, reconstruction, and radiation knows that your skin changes. You do not get that “glamorous boob job” you’ve ever dreamed of. It was sort of like a slap to the face.
I try sooooo hard to love my body, embrace my scars, show my chest to empower other girls like me, and yet Im upset because deep down I miss my old boobs:( I miss my tiny tatas with my cute little nipples that didnt need to be glued on. I am sick and tired on the pain and discomfort around my bra line, and I crave dressing up in my glitzy Victoria Secret bras:(
I am literally to the point that I want to call my surgeon and beg him to take these implants out and redo them! But then again, what if my skin continues to remain tight and it is all for nothing? What if I roll the dice one too many times and get an infection and lose my boobs all together!! I wish someone would have educated me on the difference of profiles and implants before I simply went with my surgeons recommendation. My gummie Naturelle teardrop shaped implants are just not what I imagined:( they are hard and Its impossible for me to have cleavage. I just want to feel normal and sexy again:(
Ugh… late night brain wandering is the absolute worst. Oh well, this lopsided princess must get some beauty rest…
What type of implants would you recommend? Im thinking of round, high profile exchange…
My entire life i’ve dreamt of getting fake boobs. Literally, I remember being the youngest of ages stuffing tissues or socks in my shirt as I starred in a mirror, readjusting and copping a feel of myself. I had a serious fascination with looking “womanly”, “sexy”, and the look of round perkiness hovering just above a low revealing v-neck was my goal in life. Seriously though, good cleavage is the ultimate of sex appeal! I idolized Barbie. Yes I completely understand that “if Barbie was real, she would be highly disproportional”, however… who doesn’t want to be blonde, thin, with perky boobs, drive a pink car, and own high heels in like every color imaginable? Thats literally my dream come true!
When I was diagnosed with breast cancer and heard the news that my best surgical option would be a double mastectomy to decrease my risk of a recurrence, my first instinct and I believe may have been my direct quote was “sign me up!”. Literally take my tits I do not want to die! In that instant, and in my head I just wanted the cancer out of my body. However, that naive version of myself couldn’t comprehend at the time that this would rather quickly end up being a lifelong journey and definitely not an easy fix to rid the cancer!
Mastectomies
There are many different variations of a mastectomy. There are unilateral meaning one breast, bi-lateral meaning both breast. Then there is something known as nipple sparring or non nipple sparring which quite simply means you wake up either with nips or without. In my case, I had a bilateral non nipple sparring mastectomy due to my tumor being so close to my nipple and my genetic PALB2 component making me 30% more likely to have a recurrence.
In lame mans terms, I have no tits or nips! I woke up after my mastectomy with many new lines and drains, but I was missing two of my most prized procession. The two things I waited to grow my entire life. At the age of 26 and whether it be that I had finally matured into my womanly body or just gained a few extra pounds since college, I was finally excited to finally have cleavage (after wearing a Victoria Secret miraculous bra of course) Then boom! Bye bye boobies, thank you cancer!
I almost instantly traded in my Victoria Secret swovarski crystal bras for front opening white basic bitch sports bras from Wal Mart. I was left with two bandages in horizontal lines across my chest. And a few weeks later, once my doctor removed my bandages, I looked down and realized I was the female Frankenstein! My chest was completely flat, to the point that in photos my chest could have been mistaken for my back. Beneath that white tape were two scars that I will have as a souvenir of one of the craziest journeys of my entire life!
Post Mastectomy Decisions
Following a mastectomy you are faced with yet again a TON of decisions. There are decisions for the boobs, the nipples, and the skin care for scarring and each of these decisions will effect your physical and emotional self forever. I chose to have immediate expander placement following my mastectomy which means my expanders were placed under my muscle directly following my surgical oncologist cutting out all of my breast tissue. I then went through multiple expander fills prior to radiation, then about 8 months following my mastectomy, I opted for breast reconstruction.
(Side note: I have outlined my mastectomy, fills, and breast reconstruction details in prior blog posts… check them out for all the nitty gritty details!)
Basically, following a mastectomy your doctor will give you many different options and you truly have to pick the one that will make you feel most comfortable within your own skin. Often times, to get back to a somewhat pre-cancer, quote on quote “womanly” body, you will be forced to undergo multiple surgeries which in return means pain, blood, and tears. There is breast reconstruction, nipple reconstruction, nipple/ areola tattooing, then if you have complications you may opt for adjustments, tattoos may fade, and nipples may diminish, ugh… so which one is the right one for me?
My Quest for the Perfect Nipple
This whole past year, I have been going back and forth between “team” for nipples or anti nipples. I have to explain my personal view then Ill go into my decisions made. Plain and simple, I have grown to love my scars and my flat clean chest. I am a little obsessed with how beautifully my scars have healed (thank you rxcannacare) and simply LOVE going braless (one shout out to Cancer for bringing me convenience in one aspect of my life!) It is pretty amazing to not have to worry about finding my nude bra for when I wear a white tshirt. Also, I get to wear all those really adorable crotchet back tops that require a funky strapped bra or no bra with madonna nipples as soon as they touch the cold air because guess what, I dont have to worry about a bra at all! It is pretty fabulous I must say!
However, all my love for the convenience of not having nips aside, there is still a small part of me that gets a little self conscious about my body. I post topless photos all the time because I dont feel like these breasts are mine. To me they are fake boobies, “foobies”. The will never be my old boobs. My scars cover up anything sexy about my chest. I feel the farthest thing from sexy actually. Its sad because I feel undesirable and most definitely unattractive because of my chest.
I was priveleged enough to have found my knight in shining armor pre-cancer. So he knew my old titty tatas and now my foobies. And although he sayssss I am beautiful and my chest doesnt bother him… Deep down I know it does. I mean, if I dont feel like they are natural, and I treat them as a foreign thing… how can he get turned on by them? I can count on one hand how many times since my mastectomy he has even touched my chest and probably each of those times was me facilitating and guiding his hand to cop a feel. Its awkward all around… and thats when I realized that nipples may be the missing piece to my sexay puzzle!
I have started looking into my next step of whether or not I wanted new nipples, but thought I had finally come to the decision that I feel more comfortable hiding behind my scars, keeping my unnatural feeling breasts and thats just my reality because I had breast cancer at 26 years old. Im married, he says he’s fine with it so thats a wrap, right? I mean, I guess so… but it is 2017, so why not atleast look into different options.
What are Your Options?
So what are the options when you wake up from surgery and are nippleless like an utterless cow? Well its your lucky day, because there are a slew of options, you just have to find the one that works best for you! Of course going nippless is completely fine and dandy if you feel comfortable in your new skin, which I absolutely believed I was… until I tried out some options. There are invasive and non invasive options, Lets start with the surgical approach…
Nipple Reconstruction
PROS: This would probably be the most invasive option for obtaining nipples because it does involve surgery. All surgeons are different however, my surgeon performs the breast reconstruction with the insertion of implants, has you wait another six months to allow the skin and tissue to heal, then starts to discuss adjustments and nips. Basically a plastic surgeon is able to “build up” and actually form a nipple from underneath the skin to create the illusion of having an actual 3d nipple! It provides you with a little lump that can be played with, flicked, or sucked! Every woman’s dream right?! If only you didn’t have decreased sensation following a mastectomy.
CONS: One of the major downsides to this option is that there is a chance, and many people have reported to me that the nipple that is reconstructed often collapses or diminishes, so you either have to undergo another surgery or live with a flat nipple anyways. You also then have to almost definitely look into areola/ nipple tattooing because its all swell and good that you now have the nipple formed, but “normal nipples” are a different pigment from your skin therefore to make it look somewhat natural, your going to have to get some sort of coloring or pigmentation applied.
3-D Nipple/ Areola Tattooing
PROS: That brings me to tattooing! I have had a few tattoo artists reach out to me and I’ve looked at many options going the more artistic route. If you chose to venture down the tattoo route, I’ve heard artists saying you can undergo tattooing as soon as 3 months following reconstruction! You can do tattooing whether or not youve had nipple reconstruction because the artists are actually able to use contrasting colors to create shadows and an illusion that the nipples are actually pertruding! A great option whether you chose to undergo nipple reconstruction or not. This is a way to provide a more visual normalcy to having nipples again!
CONS: Some problems I have seen going this route are finding a good artist and the cost. One of my greatest fears with tattoos are how permanent they really are. Hellz, if they go to town and my nips come out looking like pepperonis, im stuck with that shit for the rest of my life! Then theres some tattoos that have serious Montgomery gland protrusion. These often look like little spots or dots apples to the areola. Like, I am not okay with my tits looking like they have an STD! So not only am I going to be stuck with unnatural foobies, but now they are a serving platter for some bologna tits! Like, no… wayyyyy to risky for me anyways…
Chest Piece Tattoos
PROS: Then there is the beauty of receiving a chest piece! I have seen some freaking gorgeous tattoos that stretch across womens breasts. From flowers to animals, these are used as a symbol of making it through the journey of cancer. This route is much more symbolic I feel, and to some; this can also be used as a coping mechanism. Others may chose this option when their scars are dark or implants show significant rippling as a way to camouflage their imperfections.
CONS: For me, I have some tattoos but nothing large. All I can think about is what that tattoo will look like when i’m 80 years old. I would want that portrait to last and look like the weeks following its completion, surely not just a blob or bleeding colors. This is also a very permanent option. Especially after those of us have undergone so much radiation, if you do receive a tattoo that you aren’t satisfied with… you can’t just get laser removal. You are pretty much stuck with what you get.
Temporary Nipple Tattoos
PROS: Then, I found temporary nipple tattoos! I figured this was a sure solution to my nippless problem. I reached out to the company “tata tattoos” and they sent me out some samples! Tata Tattoos- Amazon Literally I felt like I was 5 tears old again and ready to apply tattoos all up and down my arms! They sent me a sample pack so I had many different pigments to pick from. I chose a pair I “thought” were close to my natural color. A little lining them up in the mirror, adding some water, peeling the paper back ever so carefully and BAM! I had myself some nipples! Wonderful, creative alternative and even something to try if your contemplating nipple reconstruction or tattooing!
CONS: In theory this was a fantastic option, until I looked up in the mirror. I initially thought they looked a little odd, even for my B-ish sized expanders. The size and shape just looked very small circles. And the color didn’t seem all that right. But then, I walked out and showed my husband and his face said it all. We both just laughed hysterically. Okay, I legit had pepperonis on my chest! I most definitely picked the wrong color! And, the best part… I couldn’t get them off for about a week! Ugh, nipple FAIL!
Basically, if you dont go the tattoo route, you really arent going to be able to recreate the look of an areola or natural colored nipple. Its practically impossible unless you are a seriously amazing makeup artist and can spend the time drawing on semi permanent nipples that wont wipe of when you get a little sweaty during some bam chica wam wam… but still im sure theyd wipe off then your partner will be like, “wait a second, where did your nips go” and that would be seriously embarrassing. Or, you get caught in a rain storm and your boobs get wet then the makeup runs through your white shirt and people are like, “um whats on your shirt?” And you say “omg my nipples”! Like, save yourself the torture!
Finally… Nipple Prosthetics
Creator of Pink-Perfect, Michal Arbel
Lets get to what you have all been waiting for, the story of my new nips! Thats what led me to my next option, nipple prosthesis! I attended the Young Survival Coalition Summit Conference 2017 in Oakland California (full blog to come), and amongst a slew of absolutely amazing vendors laid a table full of nipples. I am not talking pictures of nipples, I’m not talking statues of nipples, i am talking real life freakin nipples!! Okay, they weren’t real nor alive but that were silicone nipples and they were the most real looking nipple alternatives I have found yet!
Pink-Perfect, a company created by artist and breast cancer survivor herself Michal Arbel makes a variety of shape, size, color, and texture of nipples! Literally it looked like hundreds of different types of nipples for all skin tones to create a more natural booby look! For my sisters with one nipple, this is the best part, these are custom, and she is an absolute expert at matching her product to your existing single nipple.
PRO: Pink Perfect creates high quality, realistic, custom-made and easy to use adhesive silicone nipples to make us nippless beings feel beautiful inside and out. Aside from them looking absolutely as real as it gets, they feel real too! The silicone make the nipple squishable, and overall comfortable. And, (this is the best part of all) the glue adhesive can last up to 2 weeks per application! They are waterproof too! They can be worn in the shower or during swimming! Like for real, how incredible are these!
CON: Now in this day and age, pretty much anything that is fabulous always comes with a price tag. Pink-Perfect has two different routes that you can chose from. #1: they make a ready -made tailored for women who underwent a unilateral or bilateral mastectomy. They currently have 3 different styles including Natural, Modest or Bold. Each style differs in nipple projection and areola texture and comes in 8 different color variations. These pre-made nips run about $240.00. #2: The custom version is intended for women who have undergone a unilateral (single) mastectomy.They provide you with an impression kit including high quality silicone. You make your imprint, send it back and in return you will receive an extremely realistic nipple which will resemble your remaining nipple! How flipping cool is that! The only downside to this option is that it will run you $370.00-$440.00 (dependent on if you receive the impression kit or not).
Insurance Coverage
One additional positive about Pink-Perfect is that within the US, they are covered under HCPCS billing code L8032 (“Nipple Prosthesis, reusable, any type, each”). You can contact your insurance company and with a qualifying diagnosis and surgery requiring nipples and many insurance providers will cover them. You may need to talk to your plastic surgeon for a prescription, however it is definitely worth it due to the high cost! The way I see it is if its going to make you feel comfortable and sexy then that is truly priceless!
Adhesive:
“Pink Perfect uses a waterproof Pros-Aide® & Telesis® Adhesives which are intended for external prosthesis usage. Both adhesives are from FDA licensed companies, well-known in the professional make-up industry. Based on our research, tests and customer feedback, the complementary Pros-aide adhesive maintains its integrity for a period of several days. However, for some women, the Pros-aide adhesive won’t hold as much as they expect due to their skin moisture/pH level and may need a stronger adhesive. For these women we offer the Telesis adhesive.”
Nipple Advice
My advice would be plan for prosthetic nipples ahead of time. Get in touch with your insurance, and if they are covered just order a pair because its all about timing and premiums. For me, If I would have purchased prosthetic nipples before the new year, they would have been covered 100% by my HighMark insurance company because my deductible would have been reached. Being the start of the new year and not having as many appointments as the year prior, I have not hit my deductible therefore, the cost came out of pocket.
After trying the nipples, I was surprised by how easy they could be applied and how realistic they really look. The medical grade adhesive allowed me to wear the nipples throughout a normal day, while exercising and showering. I purchased a more natural and less bold nipple so I have a little poke when I don’t wear a bra, but they are still light enough in color that they are visible through a white shirt. I think the silicone nipples would be a wonderful option for anyone considering nipple reconstruction. They are pain free, less expensive than surgery and allow you the opportunity to see if nipples provide you a sense of emotional comfort or closure.
So, how to purchase them you ask? Well its simple, she has a website and she ships internationally! After you finish this blog post of course, head over to http://www.pink-perfect.com and check out some nipples people!
The Decision Is Yours
The bottom line is that no one lives in your body but you. No one sees your naked body except you and your partner unless you are some sort of nudest then hell yes to you my friend! Plain and simple you have to go with the decision that will make you happy, and make you feel comfortable in your own skin! I can honestly say that once I had my nipples glued on for the very first time, I looked in the mirror and cried! Not because I was sad or it hurt… but because I felt like me again, I felt normal, and I felt beautiful!
I have had my nips attached ever since the conference and I am yet to take them off. For me this is the absolute perfect alternative because the days I want to have nipples I can, and when I want to wear a shirt without a bra, I can just peel them off and store them safely in their little box. It truly makes for the best of both worlds! Thank you Pink Perfect and Michal for the opportunity to feel like me again with the absolute perfect pair of nipples! #sparkleon
Xoxo
Meg
PS: Check out my videosof my nipples below!
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Photography by: Jen HaseleuI’ve been a little hush hush… but, about a month ago I noticed a lump along my right side of my throat/ neck. It felt like an enlarged lymph node, it was moving around, squishy, and about the size of a pea. It wasnt painful at all, I mean a “normal” person probably wouldnt have even known it was there!
So, what do I do… the one thing that every Dr. tells me not to do of course, I google it! Well, basically I self diagnosed myself with everything from cancer recurrence to a siamese twin growing out the side of my neck (supposedly that has happened per my research), or even a spider bite with laying of eggs which will eventually lead to baby spiders breaking through my skin and if they hit a main artery kill me! Basically, you can say I really should stop self diagnosing…
Anyways, Ive never felt a lump around my neck before and I had my annual follow-up already scheduled with my amazing surgical oncologist Dr. Cowher, so I figured Id show him and see what he had to say instead of trying to make an appointment with my PCP or oncologist for something that may be nothing at all. That afternoon, I had to leave work 15 minutes early so I could get downtown to pick up John and make it to the hospital in time for my appointment. We literally pulled into the parking garage just in the knick of time!
I truly believe that I am the only person to ever schedule a 3:30 appointment in this office, because I walk in and you could literally hear crickets if there were any! Its a little bit awkward almost, because this was the office where my journey began. And quick side note, its always so weird because back on that first day when John and I were waiting in that office for my mammogram, we were sitting in these two seats next to the window. Do you know every time we go to this office we choose those same exact seats!! So weird, such creatures of habit!
Anyways, I was called back into the exam room. Was instructed to do the usual, change into the robe waist up with opening in the front yadadada. The nurse did my vitals and of course my blood pressure was up! I don’t know what it is, its always perfectly normal at home but you put me in a doctors office and I’m a little bundle of nerves. Dr. Cowher walked in with his lovely assistant and it was so nice to see them! The last time I saw him was about a year ago following my double mastectomy! I was bald! Now I have hair, its all just so crazy to me!
I hopped up on the exam table and he asks that dreaded question, “do you have any concerns for me?”… of which my response was well…
I went on a rant how I felt a lump on the side of my neck, its really small and moves but its scaring me. He immediately switches his focus off of the tatas and begins to palpate and feel my neck/throat. He actually couldn’t even find it, so I did and put his finger on it. He did clarify that Im not crazy and there is a lump. He said it felt like an enlarged lymph node and perhaps I’m coming down with a cold, however… (that lovely phrase “however”)… do to my cancer history, the mystery lump will be documented and must be re-assessed in about a month at which during that time if it changes he would order a biopsy.
Totally irrelevant but so hilarious!Hold up!!!! Biopsy! My stomach did a tumble-salt. I could not believe what I was hearing! After so many of my pink sisters recently have recurrences… now I have a freakin lump on the side of my neck! Like, this cant be my life right now! I am just getting back to life and living! NO No Noooooo!
I was given specific orders to not touch the lump more than once a week to give it time to “heal” and not remain inflamed. He then did a very thorough breast exam which I passed with flying colors, thank God! I made an appointment for the following month, and left the office feeling very uneasy.
John is very good at talking me down from moments of high anxiety, and just hearing that this little lump could very well be something other than a little lymph node literally made me want to cry. It is soooooo scary! And, I didn’t really want to make a big deal about it by telling my family or anything because they’ve already been through enough worrying. Ughhhh
Turned out that following week I got a severe cold, and was actually tested for the flu. I felt awful with a sore throat, post nasal drip, and a fever. I literally slept the entire weekend, I just had no energy to move. I felt for Mr. Lumpy (as I called him) and yup, he was still there! 😦 The following week I was feeling better, still had a runny nose but nothing like the week prior. I felt for Me. Lumpy, and yup he was still there. The next two weeks I was in perfect health, or as perfect as my health will get me! I felt for Mr. Lumpy, and yup he was still there:( No changes in size or pain however this little monster was still poking out of my neck!
One month flew by, and today I was scheduled to follow-up with Dr. Cowher regarding Mr. Lumpy. I felt my neck in the morning and yup, he was still there. I even asked John what should I do, cancel the appointment and keep hoping it will go away? I always go back to, maybe im really just. Razy and over re-acting… but then again if I ignore it and it is something… ugh:( John recommended us to just go and get checked, which deep down made me even more nervous because I really wanted him to just say the usual “Meghan your fine, cancel the appointment”, but this time his response was different…so we went to the appointment.
Once again, we got to Dr. Cowher’s office and it was empty! They called us right in, did the normal change into this gown ritual and I waited for Dr. Cowher. In walked my savior, literally. The man who when I first met him he scared the beJesus out of me because of how upfront he was about my very aggressive form of breast cancer. He was the first one to face me with reality that my tumor is huge and I have a gene so there is no way to save my natural teenie tatas. He completed my mastectomy and got me clear margins by a mere cut of his scalpel. And now, he thoroughly checks each and every lump and bump I find on my body!
I hopped up onto the table and he began palpating my neck. A couple seconds go by and he couldn’t find Mr. Lumpy! I know I felt it this morning, so I then started massaging my neck trying to find the mystery lump. Like magic… poof Mr. Lumpy was nowhere to be found!!! Super weird yet super astonishing all at the same time!
I then had him feel under my right (cancer side) breast where I am tender and also thought I felt a lump this morning. He once again completed a thorough exam and could not find any lumps or bumps, only scar tissue from my recent (December) breast reconstruction. A huge weight lifted from my chest, and of course Johns all like “I told ya so”. But really, how do you really know nothing is there! That is the mindset of someone who has been faced with cancer. Pretty much any slight intention of there being anything odd in my body, its always the cancer is back! I am literally living in a nightmare daily! (Gosh im writing this and thinking perhaps I need a shrink— look what cancer has done to me!)
Then, Dr. Cowher put it this way (ps: I love when he goes on rants and really brings it down to the patients level…) he explained that nobody in my life has experienced cancer like I have, not even him! Sure they were along the journey, and heck he sees it errday! Ultimately, it didnt happen to them. I have fears and anxieties that will probably be with me for the rest of my life. I cant help that Im going to feel my body (and Izzys) like a fein because Im scared okay!
Lumpxiety should be a serious diagnosis. Actually, I’m making it one because holy hells is it real! It causes many obsessive tendencies, high blood pressure, and fear! It all goes back to this awful awful awful fear of the cancer coming back! Like a thief in the night, Its always in the back of my mind that Im going to wake up and have to start this last year all over again:(
After getting the “all clear” by Dr. Cowher, we started talking about many things. First I wanted to see a picture of my tumor but of course the computer wasn’t working. Then, we talked about how there are no young survivor foundations in Pittsburgh, then we started talking about how he performs mastectomies and I asked to shadow one (which Im still working on:), we talked about cancer in general and IVF and when he’d recommend if at all for me to try to carry a baby. By the time we were wrapping up, it was about 4:20 and he had to be in a meeting at 4:00! Ooopsy! See, thats a good doctor though, he stayed and answered every question and concern I had for about a 45 minute appointment, so awesome! The crazy part is that I could literally pick his brain all day! This cancer stuff is truly fascinating to me! Perhaps i’ll go back to school to be an oncologist?!;)
So, in conclusion as per Dr. Cowher’s professional opinion, I do not have anything to worry about for the “lumps” I thought I found. Basically I need to try to stop worrying about recurrence and live life happily and carefree, because I refuseeee to live the rest of my life fearing something I have absolutely no control over! (We’ll work on this;) #sparkleon
Adhesive:
shesparkleson.com 