I was standing in line to check in at the plastic surgeon’s last week when a woman tapped me on the shoulder.
“Excuse me,” she said. “Did you write about your breast reconstruction for the University of Washington alumni magazine?”
I nodded and introduced myself and the two of us talked “shop” for a few minutes. She was fresh out of chemo and going in to consult with a plastic surgeon about recon before her double mastectomy. I was heading in to schedule my second round of fat transfer surgery but, as usual, was happy to discuss my chest with another BC buddy (and her husband, as it turned out).
I never talked about my boobs that much until I got breast cancer. Ironic, I know, since the creepy crab monster pretty much stole my boobs. What’s there to talk about, right? But since I was diagnosed, had a double mastectomy, stumbled through treatment and most recently, started down the path toward reconstruction, it seems like all I do is blather on and on about my girls.
And now, god help me, I’m not just talking about them – or writing about them – I’m baring my chest, and my soul, in new and very public ways.
Three weeks ago, I went in to see my oncologist for a quarterly check-up (blood work all came back fine, by the way) and afterward, went up to the surgeon’s office where I stripped down to show her and her colleagues the results of my first fat grafting surgery. It’s a new process and not that many doctors — or patients, for that matter — are familiar with it. I let them poke and prod and ask all kinds of questions about the science experiment I’m conducting on my chest. Not because I’m some kind of exhibitionist but because I’ve always felt knowledge is power and anything that I can do to help educate and inform other BC survivors and/or the people who treat them is worthwhile.
I have to admit, though, the old me sort of watched in horror as one white coat after another moved in for a closer look at what I’ve come to call my “foundation” (after one round of Brava/fat transfer, I sort of look like a 10-year-old girl entering puberty). Before cancer, I would never have been so blasé about showing my boobs to a room full of strangers. Well, not unless it was Mardi Gras and I’d had more than one martini (kidding!). But after living with breast cancer for 2.5 years, I’ve grown accustomed to opening my gown to whomever happens to wander into the exam room. One of these days, I’m going to scare the bejesus out the janitor, I’m sure.
I’m not just showing off my girls in person, though. I’m also talking about them — on TV, no less. Last month, I was asked to appear on a Seattle talk show called NewDay NW, to chat about my madcap cancer adventure (still can’t use the word “journey”) with Justine Avery Sands, a 32-year-old BRCA gal, who opted for a prophylactic double mastectomy with immediate recon (otherwise known as “The Jolie”). I managed to get through the 8-minute segment without throwing up, fainting or dropping an f-bomb (TV still makes me nervous).
More importantly, I was able to get across some crucial points regarding mammograms, dense breast tissue, the importance of self-exams, and, I hope, through my attitude and demeanor, convey to others – particularly newly diagnosed sisters — that a double mastectomy does not destroy your sense of humor or your strength or your soul or your lust for life. Or your lust for anything, for that matter. Here’s a link for those interested in watching.
The intersection of cancer and self. August 2013.
These games of show-and-tell have become part of my new normal. But sometimes I do wonder if I’m mentally ill for being so open and upfront about all my BC stuff. It certainly hasn’t done much for my dating life. I’ve had more than one enthusiastic suitor flee after discovering my high cancer profile (Google me and you’ll see what I mean). Whether they’re turned off by the cancer itself, by pics of me mid-treatment, or by my willingness to discuss the “C-word” publicly (without whispering or anything), I’ll never know.
I do know, though, that a year ago, I wasn’t able to have a conversation about my mastectomy with doctors or family members or friends without tearing up. These days, I’m talking – and even making jokes – about the whole ordeal on TV, in print and in line at the plastic surgeon’s.
I never set out to become the woman who talks about her boobs – or lack thereof — all the time. But I think I’ve been able to help others by serving up a few straightforward answers and insights (along with a healthy slice of attitude). As I mentioned in the interview, for me, sharing is caring. And also, apparently, therapeutic.
So what about you? Are you open about your breast cancer with everyone – even strangers — and if so, has it been a positive or negative (or both)? Or are you more stealth about your diagnosis and treatment? Do you think being open about BC helps you process it? Or is it just time, itself, that helps heal those wounds? Would love your thoughts. And as always, appreciate the read.
Double Whammied 
Breast post ever!
Everyone is different,but I guess being a nurse I am all about helping others and if that mean show and tell, well then show and tell it is! (Good thing I didn’t have vaginal cancer reconstruction….)
LOL!
What can I say? You’ve become the poster child for the State of Wash!! I vote for you. We all have to keep on teaching others as it definitely makes the walk easier for those just starting down the path.
Good job BR friend!!!! I hate to admit it but that’s been my MO as well. You want to see, feel etc.? Some are game and the farther away you get from the U of Wash., the more squeamish they seem to become. Don’t ever think twice about spreading the news; any education you can pass on is ten fold down the road to someone else. The body is one of the most interesting subjects; never ceases to amaze us as to what it can do.
Later gator and stay mouthy!!!
J
Great article! I certainly admire your ability to finally see this for what it is. I too am a single woman who thought my womanhood was being stripped from me. I too, had men run from me. I decided to let the only one into my heart that I knew would love me for ME. Yes, once I developed that personal relationship with our Lord, Jesus Christ, was I able to find peace…and a man who was perfect for me. As far as talking about my boobs and all the gory details, I did it all along… to everyone I knew. Like you, it was good therapy for me. If they asked… I told them! My attitude was “go big or go home”… and I did get back to my original size! LOL Although, it still looks like I have a melon sliced in half and inserted into my chest. I am SO glad there are women out there like you who are brave enough to tell their story and tell it with all the emotion that goes along with it!
Thank YOU!!!!!
I’m extremely open and have become quite used to the focus being on my right boob. So much so, that it came as an absolute shock to me a couple of weeks ago when my Primary Care doc said to me after my annual physical, “You’re healthy, but could really benefit from losing 15 pounds.” What? We’re not going to talk about my cancer? Or my boob? What? I’m fat? When did THAT happen???
I get it, girl! I’m all for show & tell now, but I was the picture of modesty before BC! Now I have to remind myself not to take off my shirt at every appointment I go to — the dentist doesn’t need to see my reconstructed chest!!
I also hold nothing back that I think might help someone else, both information and loss of modesty. It took over a year (it’s been 2) for me talk about it or even think about it without getting teary. Now I’m actually surprised when I tear up!
I lost shyness about my chest pretty early on in treatment, especially when you get treatment at a hospital where they teach students (parades of people like you described!). I have been fairly open through treatment and after treatment because I blogged the whole way through, I considered being more private, but realized that this is just a part of who I am, and I am just not really going to pretend to be anyone else. 🙂
Thank you for your openness. I have been following your blogs since beginning my breast cancer adventure 15 months ago which began 5.5 years after my bout with ovarian cancer. Yes, I have the BRCA1 gene (like A. Jolie) and ended up with a double mastectomy but only after the breast cancer diagnosis. I chose no reconstruction (I’m 64 and have a wonderful husband who supports my decision) . I happily share my experience with anyone remotely interested as I am just praising God that I am still alive with no evidence thus far of recurrence of either the ovarian or breast cancer. By the way – my odds of surviving the ovarian cancer were something like 25%. Your positive attitude is encouraging and I, too, want to confirm there IS life after a cancer diagnosis – and it can be a great one!
Hi There,I stole your ticket stub and used it on my page today. What I was surprised about was that I was writing about the very thing that you were talking about today before I read this email. (I added the ticket post). Anyway I want to meet you sometime but first direct me where I need to go, please to get considered for this procedure. I have a left breast gone from mastectomy last November. I would be happy to grow one also.I have a million questions for you. I am a newbie probably at this stuff. I am still dealing with people and the stupid things they so; so I have taken to writing about grief and loss and try to convey to people not to be so stupid/insensitive with things they say. I am sure my skin will get thicker the farther out I get but its still pretty sensitive (literally I mean and physically).yea the dating thing is a fiasco. Nothing like being old anyway in Seattle let alone having one boob. Oh who cares? well it might be nice once in awhile.fear reigns in the hearts of men at the C word.Have a nice day. I am glad you are blogging and doing stuff again. You go girl. I am following you. This is a lonely road.Bonnie
I couldn’t have reconstruction, so nothing to see here on that front….
With metastatic breast cancer in general, I feel like I have to conserve my energy–if it’s someone I don’t know well, how much do I want to explain? Do I want to explain how MBC differs from early stage breast cancer, that I see my oncologist monthly, a permanent standing appointment, the scans every three months, etc.
It is truly humbling, however, to remember that I don’t know what anyone else might be dealing with as was brought home a couple of years ago. I saw my neighbor near our building. She could see the rads markings on me–and she asked about them. I mumbled something about tests. She looked me in the eye and said “Do you have breast cancer?” I said I did. She pointed to her own neckline–she had a port! I never noticed it. Turns out she had early stage breast cancer. I did tell her my story and my dx.
Later, I shared my story in a magazine distributed in doctor’s waiting rooms. My neighbor saw it–imagine the shock if we hadn’t talked! I heard from a friend of a friend in my town–his wife had a mets dx and it helped her to see my story.
One concern I do have is that my story isn’t universal–I have a low volume of bone mets that have been fairly quiet. My unilateral mx, rads and oopherectomy went smoothly. I’ve been fortunate that my antihormonal tx really hasn’t had a lot of side effects. That is not the case for everyone. (I wrote about that here: http://ihatebreastcancer.wordpress.com/2013/07/19/no-more-rebecca-of-metastatic-farms/ )
It bothers me that there is seldom any follow up to metastatic breast cancer stories. Jen Smith, another woman with MBC, was profiled in the same publication. Jen is an optimist–her story was “I’m in Stage Thrive” but she recently announced via her blog that she is going to hospice care. Yet we are unlikely to read a magazine article about that.
My mastectomy “journey” has been an open book, literally. Well, actually several published web sites dedicated to mastectomy empowerment (breasthealing.com). After 30+ years as a medical editor, I knew I could make a difference in the lives of other women following in my path. It has been an amazing experience to speak with women all across the U.S. and to share with them my message of encouragement for mastectomy healing. I am rewarded by continuous emails of appreciation.
Through my experience, I invented the patented Rub-On Nipples, which are temporary areola tattoos for those of us with bare mounds after mastectomy. It is a life-changing product since so many of us need to postpone permanent tattooing. (RubOnNipples.com)
I am so happy to have found your blog because I am in the decision process of moving forward with the BRAVA system for reconstruction. After two failed implant reconstructions, I had deconstruction in April and am finally not in pain. I am adjusting to living the flat life, but am so tempted by BRAVA. I had a consultation and am considered a good candidate. I will be following your blog with great interest and appreciation that you are sharing your experience. Thank you for doing so! You are empowering so many of us! Please keep up your great work!
Elizabeth
I am also open. I get odd looks sometimes, but on balance, I think it is positive. I particularly try to counter the “oh, breast cancer, that is very curable.” My ass! I hope to live a reasonably long life, but it will always be with the next blood panel or scan hanging over my head.
My life, shirt and bra were an open book. It was worth it when, like you, I heard back from other people saying they were able to have a laugh or felt less fearful of treatment. Fear of the unknown is almost always worse than the known–and now many, many people know more about me and my boobs than they could have imagined! Hang in there and keep on keeping on…one foot in front of the other (and BTW, I can see my feet now that I have new, more compact boobs).
These stories and comments feel like a dream that I’m still living. I still cry if i look in the mirror. I was already disfigured when my cancer came back. I had am accident which took most of my right fool and a big part of my leg. I still remember when the Dr. was explaining how disfigured I would be, he didn’t think that I knew what disfigured meant. I was so embarrassed, there were students in the room and he called in a nurse in front of everybody to explain the definition of “disfigurement “, all the while their trying not step on my service dog’s tail, and staring at the golf club. cover I improvised to cover my stump because my brace no longer fit right. while their
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They were all staring with judgmental eyes while she quoted the definition. I just left in tears. I got to the elevator when this sweet nurse who described disgfigurment apologized and saying she was so embarrassed. She was following the Dr ‘s orders and she never felt so ugly. I told her that I’ll go back as long as it’s just her and the Dr. When I went back the Dr apologized and we proceeded with the discussion of a mastectomy. How weird was that? Sorry this is so long, just needed to get it out of my head. Thanks for reading.
I am so sorry for what you’ve been through, Nancy. That doctor sounds like a complete jerk. I think docs often forget that patients are people, especially when they’re lecturing to a room full of students. Ugh. That’s so insensitive it just makes me want to scream. Luckily, there are many docs who are NOT like that. I hope you’re able to connect with a good team of docs/nurses/PTs to help you through this latest bout with cancer. Take care and big hugs. -Diane
I’m amazed I haven’t come across your blog until now, especially since I see so many of my friends commenting above! You are a very talented writer. As for sharing, yes, I over share. 🙂 I have blogged from the day I was diagnosed in 2009, and continue to do so now, 2 years post a metastatic cancer diagnoses (liver) and no, I still don’t consider it a journey, even though I know where I’m going.
While caring about your own breast reconstruction is non-existent in a world where you have potentially only months left to live, I still find your story quite interesting and hopeful for those who will (sadly) be diagnosed in the future. Back in the day, I did a tissue expander recon, that being the only method open to me. I have never been happy with it appearance-wise, but eh, who cares, a few months after it was completed in 2011 cancer was found in my liver and I had other things to worry about. Unfortunately, appearance is not my only problem – the TE has been uncomfortable since day 1 – without breast tissue the implant rubs against my chest wall and has never felt remotely natural. To this day, it feels like something is stuck under my skin and needs to be readjusted – and removed. My shoulders and back have never worked right since the surgery, and I’ve lost quite a bit of range of motion, never to return. Worse, my shoulders are quite painful and I’ve had adhesive capsulitis in both of them that continues to return, despite repeated cortisone shots – the pain is unfair considering how much other pain I must deal with. Fair, I know, not an adult concept. If I wasn’t, you know, dying, I would take them out and start fresh. Of course, at my stage, I don’t want any unnecessary surgeries – with four years of chemo under your belt and what that does to your blood and immune system, you don’t go into the hospital lightly so I just have to deal with it.
I’m just very happy they are coming up with newer methods that can hopefully rebuild a woman’s figure without requiring several surgeries and using more natural methods. Although it doesn’t sound easy, it does sound like a viable option. I hope that your end result is natural, looks good and most of all – is comfortable and pain-free. I’ll continue, as long as I’m able, to look for updates. Thank you for being an over-sharer!
Thanks for the lovely note, Pink. Just added you to my blog roll (hope you don’t mind). I’m actually writing an essay about reconstruction right now, which should go live this week. I’ve had some complications with my recon (I think all of us do) but nothing like what you’ve experienced. I’m sorry your TEs and implants have caused you so much grief. Even sorrier that the cancer has you over a barrel with regard to having them taken out.
As for newer methods of recon, yes, it’s great that new procedures are being tested out. I’m all for giving women their own back — or as close to it as they can get. I just wish there wasn’t a need for reconstruction in the first place. But they still haven’t figured out how to move beyond the cut, the poison and the burn when it comes to treating this wretched disease. One day …
You ladies rock! I agree with every comment and am also very open to sharing my story. I’m just thrilled to have found this venue to read and share with fellow ass kickers. Fight like a girl!
Thanks so much, Susan. I’m thrilled you found the blog, as well. Love your feisty voice and always happy to have another asskicker in the mix. Take care and #FUcancer!
I am open about it all too, but I think it irks my siblings! I had hubby take photos all through my various treatments. I have been interviewed for Scottish Newpapers & took part in Breast Cancer Care Show as a model. I allowed the press to use my facebook cancer diary photos as I am sick of the fear & whispering about cancer, and people behaving like it is something dirty so we do not talk about it! I joke and make fun of my ‘airbags’ it is how I deal with things. Until I had BC I never knew anyone with cancer…now i am a bloody expert! Lol
I’ve had a mastectomy and I decided not to have breast reconstruction. Apparently not only am I in the minority, my decision not to undergo multiple surgeries offends many other women. I certainly have never received any support for my decision from other women and it’s not because I open up conversations with it. Instead it’s women who insist that “I must” get reconstruction who become offended when I tell them I’m not interested. I’m not dismissing their desire to do so and if it helps them – that’s great. Why is “no thanks” not viewed as a perfectly reasonable option?