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…

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

Surgery-versary!

1 year

It’s been one year since my initial surgery date.  On March 15, 2012 I had a prophylactic bilateral skin-sparing mastectomy immediately followed by DIEP Flap breast reconstruction.  We’ve come a long way baby.

Occasionally I will go back to the first postings of my blog.  It brings me right back to how afraid I was of the unknown.  I didn’t know how I would handle such a major surgery, never having been through surgery, or how my children would react to seeing me in pain through my recovery.  I was worried that my tissue transfer would fail and that my reconstructed breasts (or later, my reconstructed nipples) would become necrotic.  I was worried that my range of motion would forever be impacted, and I didn’t know what my body would be like after surgery.  I was worried about the aesthetics.  Would reconstructed breasts look freakish?  Would I still feel feminine, would they feel at all like breasts?  And, my biggest fear, was that this would all be for naught and that my breast tissue would come back as cancerous from the lab after my mastectomy.

What I wish now, as I’m sure many people do, is that I could go back to myself a year ago and simply say, “Calm down; shut up; sleep.”  But I know it’s so much easier to say that now.  I’m a year out, healthy, cancer free, and with a great surgical result.  I had 1 small hematoma post-op, barely a blip on the complication register.  I received clean pathology results within 48 hours of my mastectomy.  My children were well looked after, taken care of (and wildly entertained) while I recovered.  My body recovered well, and I am back doing the same things (and some things even beyond) I was doing before my surgeries.

I am breast cancer free, and I am thankful.

Thank you to my family and friends for your love, support, time, home cooked meals, get well cards, visits, and a little bit more love.

Thank you to my sister, Alyssa, for showing me what strong really looks like, and how easy it is to be a beautiful, feminine woman after cancer and a mastectomy.

Thank you to Dr. Sarah Javid and Dr. Otway Louie, my wonderful surgeons, who did such skilled, careful work on this body of mine.

Thank you to Dr. Daniel Z. Liu for reading my crazy ass, terrified blog posts about my post-op worries and answering me so quickly, during crazy people hours, on Twitter – of all places!

Thank you to every nurse that looked after me in recovery and took such good care of me.

Thank you to Eunice for answering my 8 million “Is this necrotic tissue?!?” texts!

Thank you to every physician and medical researcher that endures so many hours of un-fun, book heavy, sleepless nights learning about medicine, prevention, and treatment for all of us – and giving me the chance to take preventive action.

Thank you for another day.

 

UPDATE PHOTOS BELOW

 

Update photo taken 03/02/2013

R side after 2nd areolar tattoo

L Side after second areolar tattoo

Tune in Tokyo (Stage 2 / Day 1) (100th Day)

27  years later and this is still funny to me!

Yesterday I had my Stage 2 surgery in which my newpples were constructed, my left noob was liposuctioned down to equal the size of the right, and my abdominal scar was revised.  Being that I have to keep my bandages on until tonight, there wasn’t a whole lot of interesting to see when they discharged me.  But below I will paste pictures of my bandaged up body.

I woke up from anesthesia yesterday and had a headache and a sore throat from being intubated.  When I had my stage 1 surgery, my throat didn’t hurt at all after.  Or maybe it did but that pain so inconsequential compared to the pain from the surgeries that I didn’t even notice it.  Either way, I still have the sore throat today and some muscle soreness around my jaw.

My pain from this surgery is fractional, at most, of what it was for Stage 1.  My scar revision is uncomfortable.  I tried to put on sweat pants today, but the waist band of every pair of pants I have sits right on the incision.  So today I am wearing a loose fitting, comfy dress around.  My left noob, where I had the lip revision done, is sore.  It’s like I’ve taken a dozen or so body shots with only the 4 ounce gloves on.  I’d equate it to minor car accident sore.  Dr. Liu prescribed me some Oxycodone, but I didn’t need to take any of it yesterday.  I was still feeling pretty medicated when I got home, so I just took some Tylenol.  But my abilities post-op are pretty much the same was they were before.  I came home, helped my MIL make the girls’ lunches, did some laundry, tidied up around the house, and then I took a 2 hour nap when the girls took theirs. We all then got up together, I made dinner, gave them their baths, and life as we know it is up and running.

Last night I slept on my wedge pillow again to try and help the fluid drain out of my noobs (they put fluid in and then do the lipo).  I also found that it is uncomfortable to roll over on my left side.  Sleeping on the wedge kind of keeps me from rolling on my side because I feel like I’m falling off the bed when I reach the edge of the wedge.

I have some discomfort trying to pick up the girls, in both my upper and lower body.  My upper body is doubly sore because of the KILLER upper body workout I had with my trainer on Thursday morning.  We did so many sets of curls, tricep work, presses, etc. that I can’t tell if my muscles that engage my arms for movement are sore more from surgery or the workout.  The girls always want to wrap their legs around my waist when I carry them, with their legs sitting right on where my scar revision was done.  So, I have had them ride on my back on trips up or down the stairs today instead of carrying them like I normally would.  I have two weeks of healing, which should fly by since I’m still going to be doing what we normall do as a family.  My MIL left for home this morning since I’m not incapacitated like I was before.  It was great to have her here to help, but I’m sure that it must seem odd to her that we asked for help when I’m up and running.  But, that’s what the unknown is all about for me today; being prepared for the worst and getting something much better instead!

It was nice to see Drs. Louie and Liu again yesterday.  It’s funny having two people play such a big role in my life in really condensed times together.  Dr. Liu told me that he’s leaving Seattle soon after taking a job in Chicago.  I’m sure his family is probably looking forward to actually having a summer there, and his new position is probably phenomenally exciting, but it’s been very nice to have him as one of my surgeons.  I’ve really been spoiled as a patient with so much access to a treating physician’s mind during times of worry, healing, and build-up for another procedure.  It’s taken so much worry and fear out of this process for me knowing that I had him as a resource.  I’m sure his patients at his new practice will be just as taken with him.

I wanted to say thank you to my friends, family, AND physicians for taking such great care of me!  Tomorrow I will post pics of my super newpples when I get my bandages off.  Let’s all hope for something smaller than sausage nipples, but I know that they have a lot of shrinking to do before they’re settled.

Now’s your chance to run . . .

 

 

 

 

 

 

 

 

Stage 2/Day 1! Frontal

 

Stage 2/Day 1! R side

Stage 2/Day 1! L side

 

Stage 2/Day 1! Leaky Lipo noob

 

And the music video I included for this post is NSFW and probably offensive if you’re offended by swearing, strippers, or the like. Being that I was born and raised in Las Vegas, there isn’t a lot that I find offensive.  But it’s one song about boobies.  So, as my sister Alyssa would say, “WATCH OUT!”.

 

 

 

Praise You (Day 57)

Today I decided that since I had close to nothing newsworthy going on (just the POTUS cruising around my ‘hood), I should provide some additional photos beyond the typical 5 photos I upload.  I decided to post a few more photos of my abdominal scar because the focus here, and on most other women’s blogs on this subject, all focus on the breasts.  Or, at least the ones that I came across did.  But the abdominal incision is a pretty sizable one, and that isn’t a scar that will go unnoticed, should it ever slip out of its secret lair.  Whenever I am reaching for something and really have to extend myself, I worry that someone will see part or all of it if my shirt creeps up.  I don’t know why I worry about it.  It’s not like someone has seen or noticed it and asked me about it.  Seattle is way too passive aggressive for that.  It’s just a big, scary looking scar to anyone who didn’t see it at the beginning (for comparison purposes), but it’s healing quite nicely.  All of my scars have decreased in both size and color.  Everyday I am still so grateful to all of my surgeons, the physicians, and the other healthcare workers who have helped me so much through this process.  Again, my surgeons did such a great job with my prophylactic bilateral mastectomy and DIEP flap breast reconstruction.

So basically I just wanted to provide some visuals for how far I’ve come along now that 8 weeks into recovery from Stage 1.  Stages 2 and 3 will be combined since I only have a minor revision (to reduce my left noob and make it the same size as my right).  I’m interested in how I will feel seeing my body again after being healed from nipple reconstruction. I forget what my natural breasts looked like.  I guess I should’ve taken a lot of pre-op photos, but prior to this blog I wasn’t really one to take semi-nude photos of myself.  All of my semi-nude photos were typically of totally unsuspecting, unaware strangers.  I keed, I keed.  Maybe.

 

WATCH OUT!

 

 

Day 3 in the hospital.

03/18/12 – Day 4 in the hospital

Right side of my body, 5 days post op.

Left side image of my body, 5 days post op.

Week 1 / Day 7

 

05/10/12 – Frontal

05/10/12 – Flaps

05/10/12 – Abdomen

05/10/12 – Right

05/10/12 – Left

05/10/12 – Right edge of abdominal scar

05/10/12 – Left edge of abdominal scar

05/10/12 – Belly button

05/10/12 – Nipple site

 

 

 

I be up in the gym just workin’ on my fitness (Day 56!)

If you’re reading along you’ll notice that my post from yesterday didn’t publish until today (just before this one).  That’s because I had a DEFCON4 freak out last night due to what I thought was my continued trouble with WordPress.  It wasn’t until today when I went into our garage that I realized my snail’s pace upload speed, time-outs and overall “www” troubles were because of a problem in our electrical panel with the wireless router.  So, it’s a double doozy this evening.

Also, in uploading my post from yesterday I noticed that I forgot to mention my first foray into having the Noobs publicly nude and noticed.  Well, kind of publicly nude.  We were in the locker room after the girls’ swimming lesson, post shower, and getting dressed.  I usually just face the wall when I’m getting dressed in the locker room, but Yaya was going all daredevil on the bench while I was trying to put my top on.  So I had to turn around, facing the other locker room occupants topless.  And nipple-less.  I’d like to believe that the mom across the way from me would be mortified if she could see the look on her own face when she saw me.  Being that we’ve been in swim lessons for over 6 months with basically the same moms and kids, the other moms in our group most likely noticed when I was not at lessons with our girls.  I’m sure after my only-very-noticeable abdominal scar was spotted last week, they all assumed I had a very rough tummy tuck.  But after yesterday and the cartoonish, popped out eyes I received, I’m sure there is a mind reeling with questions about my Barbie noobs.

It didn’t really bother me when I noticed the other mom staring.  I figured it would happen sooner or later, but it did throw me off a little.  I mean, typically, I’m cool as a summer squash whilst nude and ogled in semi-public settings.  It did bother me when I thought about our girls.  Not in the sense that I worry about my girls seeing me and staring.  I mean it in that I worry about either (or both) of our girls having to go through this, and someone staring at them after their first phase of surgery.  As a mother, a lot of things bring out the Mama Bear in me.  Someone shooting an awkward look at either of my girls for any reason raises my hackles.  It also gave me a push towards my nipple reconstruction, which is quickly approaching. I am confident that my noobs will look more like boobs with reconstructed nipples.  (Tangent:  What will I call the reconstructed nipples?  Ripples?  RecoNipples?)  I also want to go through with the nipple reconstruction in case anyone in my family has to do this.  I want to be a good example of the end result.  If, unfortunately, one of our girls has to do this – I want them to have a wealth of information about this, as well as a living, breathing, aging example.

In the words of Snoop Dogg, “But, uh, back to the lecture at hand”.  Today was my gym day.  I feel like we did a ton of squatting, lunging, and some stretching of my upper body.  I had, by no means, an easy workout –  just different.  It is hard for me to be accepting of my limitations and the physical set backs that came with my surgery.  I wish I could tell you that I was doing push ups, pull ups, dumbbell flies and the like, but I’m not.  Just working to increase my range of motion gets my heart rate up, and today I was pouring sweat using the TRX bands to stretch my chest after our workout.  I have lost a lot of muscle from my legs and muscle definition all around, but it will come back.  I am sore tonight, kind of from head to toe.  I’m so surprised at how even a slow paced work out takes so much out of me both during the work out and over the course of the remaining day.  As it has been a running theme in this recovery for me, I am aware that I need to practice patience and acceptance.  Having stated that, I would like to draw attention to the fact that my patience and acceptance are typically allotted to my children and not for myself!  But I’m trying.  I am a work in progress in so many different facets.  But, aren’t we all?  (This is where the resounding ‘YES’ should come in.)  I’ll be back at it with Paul on Friday and, hopefully, a little bit closer to ass-kicking condition than I am today.  Until then, I’m just going to rely on my 2-ton vehicle as my method of self defense.  So LOOK OUT!