Prophylactic Mastectomy, DIEP Breast Reconstruction, and a Husband’s Perspective

I (obviously) failed at my attempt to be clever for this blog title, but it does a good job about conveying the subject matter of this post.

Since joining the DIEP support group on Facebook, I have received a few personal messages asking about things I kind of covered here previously that deserve a little more discussion.  I received a couple of direct messages inquiring what my husband thought about my process and, more specifically, my Noobs.  I’ve been asked this a couple of times and have, somewhat ignorantly, answered for Mike (my husband, who also has a blog).  I’ve said, “He was great about the whole thing.  He was supportive of my decision to do the BPM and go forward with the DIEP reconstruction.  He helped care for me during my recovery and was terrific the whole way through.”

But, after receiving another message asking the same last night and responding the same, I received this question in reply:

“But how does he think you look?”

In all honesty, my husband (fortunately) tells me very frequently that he thinks I look great.  And, to continue on the path of honesty, I sometimes feel like he says it to help buoy my spirits and keep my confidence up.  And not have me scratch his eyes out.  But I think the criticisms Mike might have about my body have nothing to do with my surgeries.  I think the real adjustment came when we had twins and the aftermath of me gaining (and then losing) 70 lbs.  I have assumed, over these past 18 months, that he sees my post-op, nude body the same way that I see it; in the dark and somewhat intoxicated.  JUST KIDDING.  I asked Mike to contribute a post to my little blog and give some spousal, but also community, perspective for those wondering the same.  Without any further adieu, I give you my husband…but only for the period of time it takes you to read his post:

My wife Shera asked me to explain how I see/view her body/breasts/scars after surgery.  Here are my unfiltered/unedited thoughts:

Addressing the BRCA issue by removing breast tissue was courageous and smart.  

Shera spent an enormous amount of time researching her reconstruction options.  She formulate a game plan that she was comfortable with and worked well for her.  She was fortunate to have supportive and very skilled doctors.

Having the potentially dangerous breast tissue removed was the first leg of the trip. Reconstruction completed the journey.  

Shera looks great. Probably better than she did before the surgery.  On some levels it seems like that’s all there is to say.  But that’s only about 10% of the story.

The scar on Shera’s stomach is massive.  It must be a foot-long. But that’s not a good measure of its significance.  What defines its significance–and what has helped me assess/understand my relationship with Shera–is that I don’t notice it.  

 

When I see her with her stomach exposed, I see a person. I don’t see the scar.  That’s not a figure of speech. I literally don’t see it.

 

It’s like I don’t have the visual vocabulary for it.  Without a word in that visual vocabulary there’s no place to store the image.  (Interestingly, I just saw a story about a variant of this concept in the NYT.  “There is no word for cancer in most Ugandan languages. A woman finds a lump in her breast, and cancer doesn’t cross her mind. It’s not in her vocabulary.”)

 

The takeaway for me from the whole reconstruction process and result is a better understanding about what my wife means to me and how I “see” her.  

 

Her breasts are full.  Her stomach is flat.  That may have been the goal.  But I think the best part–at least from my perspective–is the wonderful realization that our relationship has evolved significantly beyond cosmetics.  

 

At this point I’m confident that she’ll look as beautiful to me at 76 as she did at 26.  Maybe more so.  

 

“Happy wife, happy life.”    Shera is very involved in BRCA and breast reconstruction issues.  The experience has been a springboard to the future rather than an anchor to the past.  Based on my experience it’s important for husbands that their wives “complete the journey” so that they can look forward rather than back and live rich, full lives.  

Mike and me in 2007 (when our only babies were felines).

Dreamy, right?

*Also, since October is Breast Cancer Awareness month, I wanted to have a post from a survivor with a different perspective on reconstruction. My sister, Alyssa, is going to put together a small (but fantastic, I’m sure!) post about her process and why she chose not to have reconstruction.  Stay tuned for that, hopefully later this week.

And now, the song that I chose for mine and Mike’s walk down the aisle…

You’ve Got a Friend in Me, and so many others!

A few days ago I received a comment from Gina on one of my posts saying that she read about my blog on a Facebook group dedicated to the DIEP flap reconstruction process.  Upon reading this, I IMMEDIATELY looked for the page on Facebook and found it.  And WHAT A GREAT RESOURCE!  There are women in so many stages, some still doing research and others (like me) at the end of the journey.  If you are looking for additional resources, support, a sisterhood of reconstructed boobs – join us!

https://www.facebook.com/groups/diepsupport/

You have to request to join the group and then be given permissions by an administrator, but I was in and scouring posts within an hour.  This group is amazing and I’m so proud of us all taking care of and looking out for each other.

I’ve inserted a slideshow with all of my progress photos from pre-op through the present.  I thought this would be a quick, helpful visual tool for everyone to see what’s in store, without having to read through everything I’ve written here (because it’s tedious to read an entire blog just for a peek).

So, if you’ve been following along, there’s nothing new in this slideshow.  And if you’re squeamish (but reading this blog for some strange reason), don’t open the slideshow!

A summery summary!

I can’t believe it’s been so long since I’ve posted an update on my blog.  Blame it all on the fact that we had an actual, hot, go-swim-in-the-lake summer during regular summer months!  It was crazy good!  And, as I post this, the rain is coming down, down, down.  It was a great run, and we had a very fun-centered summer.

I haven’t had a chance to go back and see Dr. Louie because it’s hard with the girls’ schedule, limited child care options, and everything else that happens during summer (mostly weddings, travel, weddings, swimming, weddings, travel).  But this summer I did get back into my bikini after taking last summer in mostly my 1-piece to let my abdominal scar “settle” down.  I can’t say that my abdominal scar is any less noticeable, but nothing is less noticeable when you are wearing a bikini.  But I have the strategic advantage of things like stretch marks and cellulite to draw an observer’s eye away from my abdominal scar and closer to the train wreck that is a post-twins-pregnancy body (which I am still learning to love).

I bought a couple of suits from Athleta because they all have a UPF rating of 50.  I chose UPF suits this summer because I have tattoos (other than my areolar ones) that faded due to sun exposure, and I wanted to minimize the fading of my areolar tattoos.  Even with a UPF swimsuit and a coat of sunscreen under my tops, my tattoos still faded quite a bit.  I will post a picture sans-bikini top at the end of this blog entry for those of you who want to see the fading, and also so that those whom do not can take cover.

Even with some fading, my areolar tattoos still look good and pretty convincing.  They’ve given me more confidence about my body/surgery when the kids and I are getting changed and/or showered in the YMCA locker room after swimming.  I didn’t think having (or not having) nipples after my reconstruction mattered, especially after being so happy with my initial results.  But, now that I have reconstructed nipples and the tattoos, I love my result that much more.  I will schedule a follow up with Dr. Louie this fall and see what he has to say.  I don’t know if I’ll take another crack at the tattoos this fall, or just leave it be.  I’m happy with them as they are.

Something as unexpected as a timely Seattle summer happened as well.  I have been contacted so much more frequently through my blog “post-Angelina”.  I’m unsure if it is because my blog has been out there a while and (kind of) easy to find, or if that many more women are truly considering a prophylactic mastectomy after she came forward.  Regardless of the “why”, I am so happy that this blog is a resource for other women.  Really, it is all that I wanted it to be when I decided to write about my process.  I just wanted to offer some solace, perspective, and PICTURES of what all of this looks like.

Speaking of emails received, I also received a few, very surprising emails these past months.  Granted, I know that not everyone responds to photos of reconstructed breasts very well, but I did receive notification of a blog comment that read something along the lines of “$@(&# pervert!  Why the #()*&@ are you posting titty pictures on here where there are children who can read?  Show your )#*)! face you PERVERT!”  I deleted the comment and TOTALLY RESTRAINED myself from sending an (in)appropriate response, but I was surprised on many levels.  But “thank you” for calling them “titties” instead of “frankenboobies”.  However, I’m certain the author of that particular comment isn’t clever enough to come up with something as cool as “frankenboobies”.

Back to me!  I post pictures for my sisterhood of the reconstructed boobs.  I wanted to know what my results would look like, and I figured that plenty of other women want to know what potential surgical results could look like for them as well.  I don’t have many pictures of my face because THIS IS NOT A BLOG ABOUT FACIAL RECONSTRUCTION, FOOL!  Very few people holding a (very) personal interest in my particular subject matter could give a shit about what my face looks like.  So, take that rude blog commenter, I guess.  My blog is about my bilateral, prophylactic, skin sparing mastectomy and the subsequent DIEP flap breast reconstruction.  It is NOT about pictures of my face or any kind of perversions.  Those are TOTALLY DIFFERENT URLs!

So, here we go.  On with it those of you disinterested in the bikini-free pics.

3…

2…

1…

with some fading

Angelina Jolie, BRCA, and Prevention

While lying in bed last night at about 11 p.m., I was thumbing through the NY Times trying to find something to read until I was sleepy.  Instead, I found something that had me wide awake and thankful. 

As the world probably already knows, the siren Angelina Jolie publicly announced her prophylactic mastectomy and reconstruction.  She is BRCA1 positive.  I commend her for putting herself out there as the well known, stunning face of this proactive decision.  While I blogged about my process and progress, I don’t have a fraction of the draw or attention that comes with being the smoking hot Angelina Jolie.  So, in case there are any of you women out there hemming and hawing about whether or not you’ll still feel and be viewed as sexy after this series of procedures – you will be. 

Don’t you want to be as smart, sexy, revered, HEALTHY, ALIVE and PRESENT FOR YOUR LOVED ONES as she is?