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

Stitch & Bitch Free (day 142 overall!; day 43 post newpples)

Good morning sunshine!

I’m up and blogging because trying to get this done at night never works as of late!  I am now 43 days past my nipple reconstruction and 142 days since my Stage 1 bilateral prophylactic mastectomy and DIEP flap breast reconstruction!  It’s hard to believe that 5 months ago I was a nervous and emotional wreck worried about the outcome of all of this.  And here I sit, just peachy keen (well, a  little sleepy with messy hair, but otherwise peachy).

So I have had to doctor’s appointments since my last blog post.  The first was with my breast oncologist, Dr. Larissa Korde of Seattle Cancer Care Alliance.  I met with her for ONE LAST TIME! just as a follow up and baseline assessment post bilateral prophylactic mastectomy and DIEP flap breast reconstruction.  Just as I was with my last visit with Dr. Sarah Javid, I felt very fortunate to have Dr. Korde taking care of me and screening me while I waited for a decision about what to do with my BRCA1 mutation and those damned boobs.  I saw Dr. Korde every six months for screening, either in the form of a mammogram or a breast MRI.  Now that I no longer have my natural breasts, I do not need a breast oncologist or breast cancer screenings!  What a relief!  As I’ve written before, there was such a  lingering feeling of doom every time I went in for my screenings. I just knew that that appointment would be the one at which I found out that I had dilly-dallied too long and this genetic mutation had manifested in breast cancer.  I would go through so many emotions waiting for my screening appointment and be upset with myself for not having our lives together and situated well enough to have the bilateral prophylactic mastectomy and DIEP flap reconstruction.  I knew that this process was going to ask so much of my husband, our family, loving friends, and our two little girls.  With the benefit of hindsight, I know that I didn’t misjudge the level of upheaveal my surgery would cause in our lives.  We needed a lot of help with the girls, and I can’t thank our family and friends enough for helping us.  Everyone was so supportive and wonderful; I was (and still am) stunned at how genuinely concerned, caring, and helpful everyone has been.  And, here I am, on the outcome end of all of this and feeling great about my choices and my surgeries.

Dr. Korde discharged me from her care and referred me to the wellness clinic at Seattle Cancer Care Alliance, where I will continue to go for my CA125 marker blood draws and pelvic ultrasounds to monitor the health of my ovaries since they, too, are at risk for developing cancer.  At our last appointment together, Dr. Korde performed a brief “breast” exam.  In true compliment to Dr. Otway Louie and his team, she asked me if I had the skin sparing AND nipple sparing mastectomy.  So, kudos to Dr. Louie for giving me such realistic, reconstructed nipples that they fooled a fellow physician!  Dr. Korde asked me if I had any concerns at that time, and my only concern was this arc shaped band of thick scar tissue that’s formed underneath my left noob.  It didn’t form (or at least noticeably form) until after my stage 2 revision surgery.  It’s about the thickness of a finger and runs from the side of my noob adjacent to my armpit all the way under the flap.  I noticed it when toweling off one day and that my pectoral muscle was uncomfortable in that same area whenever I raised my arm overhead.  Dr. Korde felt it and said that it did feel “different” to her.  She said that I’d probably be able to break it up with deep tissue massage or another modality, but to first ask Dr. Louie about it.  She said that I could have additional imaging done at Seattle Cancer Care Alliance if Dr. Louie was concerned about the scar tissue.  So, that got me all riled up because I was worried that I would have to undergo yet another procedure to address this weird band of scar tissue.

I then saw Dr. Louie on Monday, July 30, for our follow up.  I told him about my scar tissue, he performed a quick physical exam, and told me that I could simply start massaging it to break it up.  Relief!  Simplicity is so amazing at times like these.  At the time of my follow up with Dr. Louie, all but about 6 of my stitches had fallen out.  His resident removed the last danglers and, alas, stitch and bitch free!!!  If I do say so myself, these reconstructed nipples are pretty convincing.  During my healing, I was really worried that I wouldn’t guard them enough and would end up with flattened out newpples.  I spent a number of weeks looking like I was wearing Madonna’s long lost cone bra from the early 90’s because I was so padded up with protection around my newpples.  But it was totally worth the numerous confused and questioning looks receieved whenever I went out in a fitting t-shirt.  I have a little bit of projection and don’t look like I’m REALLY EXCITED to see everyone.  The circular shaped scar I have from my nipple reconstruction is different enough from the surrounding skin on my noob to look like arealos that are simply the same color as my noob.  My areolar tattoo appointment is on October 1, so I have a couple of months with no noob/newpple action to enjoy with our family.

I wanted to add in this post another testament to the great work of my reconstructive surgeon.  As with every blog post, I included photos of my recovery process on my last blog update.  I have done this throughout my process.  I have always included photos of my noobs, but it wasn’t until my last post with photos of my healing newpples, that I was flagged on Facebook.  My blog feeds to my Twitter, which feeds to my Facebook.  I found it interesting that up until that point, my noobs were of no concern to whomever flagged my last post on Facebook (which was later removed from my feed).  But, my convincing, reconstructed newpples are the official point of controversy.  I was very much testing the waters to see when, if ever, someone would think that the noobs were looking too much like the real thing.  So, in the words of Billy Blanks, Tae Bo – now you know!

Again, I can’t say that you enough to all of my physicians.  Dr. Javid did an amazing job on my mastectomy; my recovery and healing went really well due, in large part, to effective yet gentle touch.  Dr. Louie’s DIEP flap reconstruction is nothing short of phenomenal; the proof is in the pictures (no pudding, please!).  And, I have to say, I miss seeing Dr. Daniel Liu, who was Dr. Louie’s plastic surgery resident.  Everytime I had an appointment with Drs. Louie and Liu, it was so great to see him.  He is a great guy and surgeon.  He took mercy on my near pulsating anxiety and started to follow my blog when we were gearing up for surgery or shortly thereafter.  All of my rambling questions, my middle of the night concerns (both founded and, sometimes, just wild), and nervous energy just sent out to the ether…Dr. Liu was kind enough to send a note here and there to address them.  I have heard that many people are paying a pretty penny to have a Concierge Physician service.  I am not one of those people, but Dr. Liu was there for me free of charge.  It was, and is, such an amazing thing to have a physician so involved.  I feel, a lot of times, that when I’m out of a doctor’s office, that’s it for my concerns until the next appointment.  I don’t know if I was a particularly anxious patient or Dr. Liu is just a super nice guy, but either way I’m entirely grateful for his extensive care and attentiveness during my surgeries and recovery.  I believe he and his family are now in Chicago enjoying more of a summer than we’re having this year.  I hope his patients realize what a gem they’ve received from our Emerald City, and I hope he’s absolutely loving his new job.  But, I just wanted to send a huge thank you out there, in case he still reads this, for all of his help.

So, now for the photographic evidence of all of these doctors’ great work!  My abdomen incision is also looking really great.  Because I have several scars that have kiloided over my lifetime, I asked Dr. Louie what to do about my scarring.  He gave me a reference sheet for a product I can look into that may help me prevent this on my abdominal scar.  Once I’ve bought and tried this, I’ll post progress pictures if there’s a noticeable difference.  Right now I’m just trying to keep a good SPF on my scar and am wearing a new, one piece swimsuit that is UPF 50 to try and prevent my scar from getting any darker.

Next procedure up:  Areolar tattooing – October 1, 2012.

07/31/12 – Incision

07/31/12 – Incision, L side

07/31/12 – Incision, R side

07/31/12 – Noobs!

07/31/12 – L Noob + Newpple, upclose & personal!

07/31/12 – R Noob + Newpple, upclose.  Controversial!

Prince, Controversy

Everybody Was Kung Fu Fighting! (“Newpples” Day 5)

I am happy to report that things haven’t been any crazier, wilder, busier, or necrotic since my nipple reconstruction and scar revision on Friday.  As I previously posted, I kind of came home, hit the ground running, napped, woke up woozy, repeated.

The past few days I’ve been a little more sore along my abdominal scar.  I’m a little swollen and tender there.  Having to wear pants (because it’s still winter in Seattle) causes a lot of friction and irritation along my scar revision.  Also, the girls have been demanding that I carry them everywhere the past two days, so having 2 toddlers resting on my scar revision sites isn’t helping along Drs. Louie and Liu’s work any.  I’m hoping for the absolute best, but my scar revision, in all honesty, has taken a beating in the past 48 hours.  Bothered as it may be, my level of discomfort is easily managed with Tylenol.

I am still pretty neurotic about my reconstructed nipples (“newpples”).  I open my surgical camisole about 5 times a day to make sure one hasn’t fallen off, isn’t being compressed by a slipped wad of gauze, or something else equally dramatic.  When I was able to take off and change my dressings from the hospital, I was about 0.05 ml short on Crazy and decided I didn’t have to make the new dressings look exactly like the ones I was discharged with. And, in all honesty, I would’ve plowed through all of the supplies they sent me home with just trying to get to something even close to these:

06/25/12 – Newpple protection

 

I have 4 x 4 gauze pads with little holes cut in the middle of them for the newpple to poke through.  I stack those up until they clear the tip of the nip, and then put another (whole) gauze pad over the top and tape it to me.  Then I toss on my surgical camisole for support but not too much constricting force on the tender ninja stars (just wait; you’ll see).

 

06/25/12 – Surgical camisole

 

 

(Advanced warning to those who do not want to witness the gore…it gets pretty intimate and gorey from here onward!  Take your leave now lest your precious eyes be polluted!)

 

 

Mike helped me do the first dressing change and wanted to be there for the big reveal.

 

06/25/12 – Husbandly duties

 

 

 

We were both pleasantly surprised to find that I’d been sent home with two well crafted ninja stars to add to our home defense collection!

06/25/12 – HIYA!

 

Even with the dried blood, scabbing, wild style steri-strips, and stitches, they look like they’ll be damn convincing when all is said and done.  I am certain that until either one of my plastic surgeons say, “You can’t mess them up from here on out”, I won’t relax about them falling off or otherwise failing.  This part of the process has been so intimidating to me!  I am so worried about it because I think that without the sensation of pain (no nerves post-mastectomy), I won’t know immediately if they’re necrotic, injured, infected, et cetera.  So, it oddly is the one time through this whole process I am wishing I were able to feel more pain.  Although, I wonder if I still had some sensation in the nipple reconstructions sites I would still be panicked if I was feeling pain (too much pain?).  Who knows?  I’m a nervous nelly about these things…because they can FALL OFF.  So, I have nothing superbly interesting to post about the newpples, just that they’re coming along and hopefully healing well and never, ever necrotic, infected, or otherwise failing.  Close ups are below.  Avert your eyes if you plan on having sausage soon.

 

 

06/25/12 – Frontal

06/25/12 – Right ninja star

06/25/12 – Left ninja star

06/25/12 – Lipo’d noob

 

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!”.

 

 

 

Heroes & Villains (DAY 89!!)

Oh man, I can’t believe that I’m at day 89.  In so many ways it feels like that is such a big number to be post-op from stage 1.  In other ways, it feels like my Stage 1 surgery wasn’t so long ago.  But, here I am, nearly 2 weeks from my last blog post, and so much has happened in life.

We took our girls for their first airplane adventure and had a very mini, my-side-of-the-family reunion in Las Vegas.  I was born and raised in Las Vegas.  My mom, two out of three sisters, and our brother still live there.  My Grandma, who spent a lot of time dealing with us in our prime-pain-in-the-ass-kids time moved away about 13 years ago and I hadn’t seen her since.  Well, Grandma managed to hitch a ride back to Vegas with her brother for a few weeks, and it was our shot to get all of the great grand kids together in one place for a weekend to see our Grandma.  It was fantastic, bittersweet, and much too brief.

4 Generations

We came home on a high note, and it just sank in how precious little time we have with our loved ones.  After every visit with our extended families, I think about how much more comforting the days must be for people who are surrounded by their parents and siblings.  It is difficult to explain, and even sometimes understand, why the love and comfort of family is so different from that of friends.  I don’t know how to explain it to anyone else, I just know that it feels SO good and, when we’re all together, I feel whole.

Anyway, we came back home and it seems like the pace of life increased exponentially and the projects just keep cascading one on top of another.  Our girls just started going to preschool 1 day a week.  It’s a huge change for all of us.  But mostly me.  I am trying to overcome my helicopter mom extraordinaire nature, and I’m also trying to work P/T from home.  So, while I would love to keep these little lovelies all to myself, I realize (and appreciate) the lunacy in such a scenario.  It’s also helpful to have a full 6 hours to focus just on work.  Whether that be work to be done for an employer or work around the house, it must be done.  And 6 hours is really no time at all when it comes down to it.  Just as quickly as those 6 hours have gone by the past two weeks, the time before my next surgery is quickly falling through the hour glass.

Stage 2&3 surgery is on June 22.  I’ll be rocking some baby carrot sized, newly minted nipples for a few months until they settle and shrink down.  After that, I will have to wait until my “newpples” are healed and settled, then we move on to areolar tattooing.  These last few stages pale in comparison as far as pre-surgery anxiety to my Stage 1.  Occassionally I go back through this blog to see how I’ve progressed and just reflect on this experience.  I was so incredibly afraid of the unknown.  Nothing that I read back then and nothing that anyone told me eased my fears.  I also think it is so interesting how I was so worried about “losing” my natural breasts and having the noobs.  While the loss of sensation is a bummer, I don’t have any of the feelings of loss I thought I would.  I was worried about my husband not looking at me or my body the same; I was worried about how this body would feel to me with the lack of sensation in my breasts; and, I was worried about the aesthetic result of my reconstruction.  With all of these things constantly fluttering around in my mind, I was my own worst enemy most nights.  As it turns out, all of these worries were, mostly, for naught.  I do get a little sad that when I hug someone, it feels like there is a balloon or a large pillow between us.  Like there’s an embrace but with a little bit of a gap between me and my hugger. And these noobs look great.  They’re still a work in progress, but they’re great.  So this time around I’m not worried about any losses, the aesthetic, anesthesia, or the care of my family.  I’m going in feeling strong and looking forward to be moving towards finality of this process.

Speaking of feeling strong, I just wanted to let other women simularly situated know that I am back at the gym with my trainer just a smidge away from full force.  In the past few weeks I’ve done box jumps, ran stairs, lifted heavy weights, and today I finally got to do a little bit of boxing.  My trainer and I are both mindful of how I’m feeling and whether getting back to these things is causing me discomfort or causing me pain.  And while getting back into shape is typically a pain in the (flabby) ass, I’m not having any pain directly related to or involved with my surgical sites.  I am going to keep at it for the next two weeks before I have to, again, reduce and modify my activities – but for the moment, it’s on.

AHOY!

06/07/12 – Frontal

06/07/12 – Flaps

06/07/12 – Abdominal scar

06/07/12 – Left side

06/07/12 – Right side

Think(ing) About It – Day 76

So the countdown for the next phase is underway.  Wish as I might, this is not the final countdown.  After I have my “newpples” manufactured , I’ll need to have areolae tattoos done once they (newpples) are healed.  I’m hopeful that will then be the end of my journey, but I know myself to be overly optimistic (if that is what you would call it) about these things.  I’d liken it to when my husband and I thought we could survive our first week (and beyond) with newborn twins without any support or help from friends, family, or a doula.  Or like how I thought I would somehow set a world record of sorts and recover from my bilateral mastectomy and DIEP flap reconstruction in 4 weeks (I mean fully recover).  So while you may read this and think, “Aaaah, so she knows better NOW!”, I do not.  I’m hoping that my loss of sensation due to the mastectomy will equal very little (if any) pain.  While I don’t know how much healing time freshly manufactured nipples require, I don’t foresee myself being as drained and exhausted as I was when I underwent my stage one surgeries.

Drs. Louie and Liu seemed to be of the same mind about my recovery time frame this go round when we had my follow-up/pre-op appointment.   The part that is driving me a little crazy is the evening out that needs to go on with my noobs and my abdominal scar revision.  My left one is fuller and bigger than the right, so the left noob will be lipo-sculpted (maybe?) so that it is closer to the size and shape of the right one.  I watch not a lot, but enough, reality television to know that liposuction is a mutha.  But I’m not having the last 20 years’ carbohydrates vacuumed out of me (’cause that shit doesn’t happen free of charge); just the last quarter’s excess noob. As for my abdominal scar, the corners are a bit puckered and dark.  I think Dr. Louie will do an abdominal scar revision to try to and improve the aesthetic of those areas and not much else.

As I told Drs. Javid, Louie and Liu (and anyone else who will listen, read, endure), I have had a really easy and excellent process so far.  Writing that and saying it makes me feel like I’m jinxing myself and something truly horrid will arrive at my feet (triple nipple, anyone?).  But, I have to air it out.  What I did learn after going through stage 1 is that talking about these feelings, neuroses, thoughts, et cetera really takes the fear out of the unknown.  So, thank you for enduring all of my Stage 1 crazy.  I will now shut up about it.  Strap yourself in for endless (well, like every 48-72 hours) babbling about newpples, areaolae, the triple nipple and the unforeseeable nooby future!

 

 

 

You know what is foreseeable?  THIS…

 

 

 

05/28/12 – Flaps

05/28/12 – L flap

05/28/12 – R flap

05/28/12 – Abdominal scar

05/28/12 – L side of abdominal scar

05/28/12 – R side of abdominal scar

 

 

 

 

 

My Family / New Nipples Pending (Day 73)

I have been terribly remiss about keeping my blog updated; I apologize.  Life happens, a lot, as it turns out.  On last Friday we left for a weekend in Las Vegas.  It wasn’t a drunken wild west weekend where everything that happens in the 702 stays there.  It was quite the opposite, actually.  My entire immediate family was there for a small and all too brief reunion.  Our Grandma, Mary Lou, was in town for the first time in probably 13 years.  After she retired, she decided to move to a small town in Minnesota.  The last time I saw her, I was still in high school.  Our Grandma hadn’t met my husband or our girls.  I think she’d only met 3 of her 8 great grand children prior to last weekend.

My grandma, mom, sisters and our kids.

Our dad and brother were also there with us (Dad quietly endured us celebrating his birthday).

Dad & Tessa

Grandma, Tessa, Chance

Last weekend was the first time we’ve seen everyone since my surgeries, and I really wanted to show them that I was feeling and doing great.  It was also great to see everyone and be the big, noisy family we intrinsically are for just a few days.  I sat and talked with my grandma as much as I could while still getting to visit with everyone else.  I told her as much as I could spew out about the grown-up-me, my husband, and our girls in brief spurts.  Being that I’m 1 of 5, I couldn’t hog her.  But I really wanted to.  I also wanted to let her know what a difference she’s made in our lives.  It’s hard being so far away from family, especially when we grew up seemingly stacked atop one another for what felt like an eternity (at times).  These past few years have taught me so much about family and love.  I’ve missed being surrounded by both.  This is our family get-down song.  Or, at least, one of the many.  I’m inserting this in the middle of my post to really force you to listen to it.  I can be am pushy.

 

We returned home on Sunday, and life as we know it resumed from there.  On Monday I returned to Dr. Louie’s office for my follow-up/pre-op visit with him and Dr. Liu.  We combined my final stage 1 follow-up and noob revision/nipple reconstruction pre-op visit.  My recovery is going just fine; stage 2 is just under a month away and I need to be thinking “newpples”.  I really wanted to wear my prosthetic nipples to my appointment just to ask Drs. Louie and Liu what the differences would be in size, shape, appearance in comparison.  But I couldn’t remember where I put the prostheses and had to leave without them.  My left noob will be reduced in size so that it is symmetrical with the right, and Dr. Louie will origami my newpples using what I think is called a Cylindrical flap.  Dr. Louie made me this cool paper version, which I will now insert for your complete awe and future party trick bag.  In the first photo, you’ll see where Dr. Louie drew a nice set of noobs with the nipple sites indicated.  At the bottom of the page is the sketch and cut out of the cylindrical flap.

Newpple Origami Step 1

In Step 2, the flap is “lifted up” (or “peeled back”, depending on what you’re reading):

Newpple Origami Step 2

In Step 3, the “wings” of the cylindrical flap are brought together:

Newpple Origami Step 3

In Step 4, the top of the cylindrical flap is brought down to close the cylinder:

Newpple Origami Step 4

In Step 5, the negative space left from the skin used for the nipple reconstruction is brought together:

Newpple Origami Step 5

And then it is stitched closed:

Newpple Origami Step 6

There are so many methods for nipple reconstruction; I was really surprised when I happened upon this article.  I am a horrible geometry student.  I couldn’t even fold notes well in school.  So none of these methods would have ever occurred to me.  And that, people, is why someone other than me is making the big bucks.

Hopefully, this will be my first and only revision surgery.  While it is easier to reduce the size of one noob instead of increasing the smaller one, there is always the possibility that additional revisions have to be made.  I have had the pleasure of meeting other women who have gone through this process because I’ve published this blog.  One of those women is approaching her seventh surgery due to complications, heavy scarring, and necrosis of 1 nipple.  Another reader is recovering from her fourth revision surgery because her reconstructed breasts ended up so dissimilar after her first revision.  I have incredible faith in my surgeon’s abilities but appreciate the challenges associated with breast reconstruction.

Unlike my initial surgery, I have very little anxiety.  I am a little worried because I think we’re going to try and fly solo as a family for this recovery and hope for the best.  If I do have more pain than expected, we’ll be watching a lot of Disney movies with the girls, eating frozen dinners (or take out), and phoning in favors.  So I’m just trying to stay positive and start planning for June 22…and beyond!

The update photos posted below are a few days old but, as with before, there are no dramatic changes.  (Other than more natural light in our bathroom because Seattle actually got some damn sun, which has since left us.)

 

Cuidado!  Peligroso!

 

 

 

 

 

 

 

 

05/22/12 – Frontal on Day 69

05/22/12 – Noobies on Day 69

05/22/12 – Abdomen on Day 69

05/22/12 – Left Flap on Day 69

05/22/12 – Right Flap on Day 69

Ya Mama, Ya Mama, YAMAMA (Day 60)

Happy Mother’s Day!  The weather has been so amazing here this weekend, I hate to even mention it for risk that it will notice and run away (which seems to always happen in Seattle).

We’ve had a busy weekend full of fun, sun, and accidental midsection exposure.  It’s interesting how sometimes you (I) put something out into the universe, and it comes barking right back.  In one of my more recent entries (day 57) I discussed my abdominal incision and mentioned that no one has ever noticed or asked me about it.  Well, yesterday and today it went noticed and also got mentioned.  Interesting, right?  Yesterday I was with our daughters at the park and helping one of them onto a platform that leads to a slide.  My t-shirt crept up as I raised my arms, and a mom next to me said, “Wow!  You have the worst c-section scar I’ve ever seen.”  I was distracted, caught off guard and didn’t know what to say.  So, how did I respond?  I said, “Oh; thanks.”  That’s right.  Oh; thanks.  But what was I supposed to say?  How do you appropriately respond to someone making an incorrect assumption about a surgical procedure.  “Well, yes, I have this very large scar on my abdomen and twin toddlers.  Deductive reasoning might lead you to that conclusion…but really I lopped my tits off in hopes of beating cancer to the punch and replaced them with my muffin top.”  Better to live with the assumption, right?

A similar situation happened today at the park.  I was helping one of our daughters climb on a sculpture and my shirt crept up.  A little girl and her dad were next to us; she saw my scar and asked me if I was ok.  I said I was great and asked her how she was doing, at which point she decided I was a monster and ran away.  I thought it was funny (and a little encouraging) that, for her, the social interaction was more bothersome than my scar.  Like I said, it’s a little scary looking still.  I know it will improve a little bit more, but it’s definitely approaching what it will look like for the rest of my life.  So half shirts and bikinis are off the table, but that’s pretty much been my story since 2008.  I’m breast cancer free.  “NBD” as you young people say.

 

LOOK OUT BEEEELOOOOOOOOOW

 

 

05/13/12 – Frontal

05/13/12 – Noobs

05/13/12 – Abdominal scar

05/13/12 – Right

05/13/12 – Left