A Breast Cancer Diary Reflection on Flat Denial

Today I'm reflecting on how far I've come since my first mastectomy--the one in which I was denied flatness. Thanks for listening as I process my own anger and regret and allow them to officially become softer. 

Transcript:

Welcome back.  Today in episode three of the podcast, I just want to reflect a little bit on some of the themes that came out in episode two, where I interviewed my guest, Michaela Raes, the founder of Breast Cancer Confidence.  Her project is based in imagery and photography, and it is all about confidence and body image after mastectomy and lumpectomy. And if you didn't catch that episode, be sure and listen to it after you listen to this one. I just want to talk about some of the main themes in my own journey, being around body reclamation and self image and body acceptance after my own botched mastectomy.

Last November I made a YouTube video about the idea of flat denial. There's hundreds of women that ask to go flat after a mastectomy and are not granted that wish by their surgeon for many reasons--either the surgeon is in denial themselves about the ability of a woman to not want breasts or they're just not listening or they care more about their ability to express themselves in their "art" of reconstruction than they do about the woman and her ideas of what she might want. 

And of course, I was very upset. I was very angry for many months--well over a year--probably a year and a half after my first mastectomy, wherein my surgeon denied me the flatness that I asked for and the smoothness that I asked for.  But I've started to stop being angry now and talking to Michaela last week was really helpful in seeing the progress that I've made.

Also looking at the pictures that I had taken with her and Jolana here in the Portland area with some of my flat friends--I've got those pictures set as my screensaver on my computer now, and I've been looking at them a lot over the last few weeks and realizing that, you know, having a bunch of ladies with their shirts off and having no breasts and our arms around each other and being joyful together and celebrating our bodies is not something that most people would take naturally or lightly or, you know, most people would have to kind of think twice or think a long time to kind of process how that's even possible. I know I would have before I went through it. 

I think I have a lot more compassion now toward my surgeon,  who not only denied me my flatness once, but actually twice. On my revision, which was a month after the mastectomy, I had margins that needed to be cleared. And I asked her again to take out  the extra skin and the wrinkles, in my skin and make it flat and she seemed to be listening to me, but  she again left a lump very intentionally wanting to make that into a nipple. I thought back in November when I made that YouTube video that I would be at some point sending a letter to my insurance company and asking them to defund her or demand the money that she was paid  to be paid back to them because  she was not granting me the informed consent or any kind of consent over my process and my body.

And I was really upset about that. And now I'm so much more understanding and  patient, I guess, with the process that this, this work, this activism that I'm doing needs to take time and allow for some movement and growth in other people's lives. Certainly in the surgeons that are trained to do aesthetic plastic surgery are trained to make breasts better overall, instead of taking them away.

Of course there's a lot of change that needs to happen in this area and so I, I kind of think myself, would I rather get that surgeon's attention by complaining and threatening to remove money, which probably wouldn't happen in the end, especially with all this time that's passed--it's been a year and three quarters since the surgery. Or would I rather be able to strengthen myself and come out of my anger and into a place of compassion and write her a letter myself with an openness of heart and  vulnerability and honesty and express to her how important it is for people like me to be heard by her in the future. 

I don't know that I would ever expect a reply from her, but I kind of think that might get her attention in a more effective way than making threats or filing complaints would.  And so now I'm kind of thinking that that's where I'm going to land in this process of reclamation of my body.  I have reclaimed my body from that spirit of theft, of, you know, just ignoring what I had to say, which is a huge injury in itself for a medical professional, but  I'd like to go further and really affect change for her and for other surgeons like her by continuing to tell my story and talking to Michaela I think really helped me to do that. There was a point in the interview with Michaela where she said, you know, you might lose the choice that you thought you had.

And that's definitely something that happened to me. I thought going into that first mastectomy that I was going to have a Goldilocks procedure, which would leave me with a small, tiny little mound.  And then I told that surgeon that if I couldn't for some reason  have that procedure that I wanted to be as flat and smooth as possible.

I didn't know the term aesthetic flat closure at that time. It was too early in my research on these kinds of things. I didn't discover that term until later. And that's a huge regret for me.  It's not something I could have controlled probably, but I do wish that I had more time to look into that. I was more concerned about the cancer than I was the closure and spending all of my free time researching the cancer itself because that was more important.

So, I can't do anything about the regret of not learning about aesthetic flat closure. And I imagine that's probably not top on most women's minds. And that's why it's so important that we educate surgeons about this new preference. I think women historically had a preference to go flat because they just wanted to be done with it and not bother with extra surgeries. 

These days, I think the assumption is by most surgeons that women are going to want implants because they're paid for by insurance now, and they're easily done in a matter of hours and  it makes them a lot of money. So it's kind of the obvious choice from a surgeon's perspective, but  a lot of younger women especially nowadays just really want their health to be the priority and they don't want to bother with extra long surgeries and surgeries every 10 years to replace implants. 

So this isn't going away. This is a preference that is going to be here  and I just have to wonder what the best way to educate surgeons would be, considering that they have all the power and don't really need to listen to us once they've done surgery on us. How can we go back to them and teach them in a way that they'll understand and listen? 

And how can we vote with our dollars and go and support surgeons that have listened to other women?  These are questions that definitely aren't resolved for me. But they are a little bit more tangible and a little bit more within reach because my anger has slowly been diffusing over the last few months and I just... I'm so grateful that I got to have a chance to talk to Michaela and see that about myself. 

And so I'm just wondering if anyone else out there is having these kinds of thoughts. Did you have a really icky experience with your surgeon? And are you afraid to go back and talk to them about that and educate them so that they're better informed for women that they serve in the future, assuming that they do want to be better--that they are not necessarily  ego maniacs or narcissists, which I'm sure some surgeons are, but we don't want to assume that they are. I certainly don't. I would rather assume that they want to learn, but it takes a lot of courage to write those letters and speak those words. Because the fear is that you won't be heard again. At least that's a fear for me. So this is just me writing in my diary asking for accountability around this.

It's a process and it's definitely not at its end yet. But I wanted to share just some of my thoughts after talking to Michaela.  It is a mystery to me still how much I can love and accept my body and that I actually appreciate it more than I did when it was fully whole, still breasted, still that kind of stereotypical woman shape. But I really appreciate it for what it's brought me through, even though I think that some of the photos that I post on Instagram of it, are pretty repulsive to other women  and certainly to most men who can't even put themselves in my shoes. I understand that and I accept that, but I do still want to push that envelope and challenge--not necessarily the average woman, but challenge the average breast cancer survivor to think about the beauty of this option and the option to advocate for every possible choice  after mastectomy, not just implants, as Michaela was saying in the interview last week.  

So that's all I've got for today, and I hope that you'll stay tuned for my next interview, which is coming up on Sunday with my friend Marquita talking about some unexpected changes in her treatment plan that happened 12 years ago when she was diagnosed with triple negative breast cancer. 

I'll talk to you then.