Choosing Not to Have Breast Reconstruction

A woman’s risk of breast cancer approximately doubles if she has a first-degree relative (mother, sister, daughter) who has been diagnosed with breast cancer. About 15% of women who get breast cancer have a family member diagnosed with it.

– From http://www.breastcancer.org/symptoms/understand_bc/statistics

As I mentioned in yesterday’s post, I asked my sister Alyssa if she would also contribute a post for this blog, which she sent to me last night.  A few things need to be said before we get to my sister’s post.  Alyssa and I are the two youngest of 5 kids.  While all of us “kids” are within 2 years of one another, she and I have a different relationship with one another than we do with our other siblings.

We talk or at least text every day.  When one of our husband’s is out of town, we are the other’s “safety buddy.”  We will tell each other when we’re going somewhere, when we get home, when we’re going to bed or wake up, and remind the other to lock the doors and windows.  Until I got married, Alyssa was the focal point of my love and the highlight of my days.  I told her everything, and possibly WAY TOO MUCH at times (especially on weekends after 2 a.m.) any time I got a chance to talk with her.  She was busy with her husband and young family, but she always made time for me then – just like she does now.

Alyssa has been a stay at home mom since her first born made his debut 12 years ago, and she’s damn amazing at it.  She cooks, cleans, chauffeurs, manages schedules and homework and still has a laugh every day.  She is so sweet to her husband and kids, but that’s just her nature.  She is loved, needed and relied upon in her immediate and extended families.  She’s also secretly a devil, and I mean this in the nicest way possible.  She is sweet, shy, reserved until you mess with her family; then she will scratch your eyes out and possibly break a glass vase over your head (totally a fictional scenario…).

I bring these things up because my Alyssa is someone else’s wife, sister, mother, cousin or best friend.  And while some people have recently said that having the entire month of October for Breast Cancer Awareness is too much, I disagree.  If not for Alyssa’s cancer, I probably wouldn’t have discovered my own genetic mutation and developed breast cancer myself.  I can’t help but assume there are so many other families out there with a genetic risk that just isn’t thought of or accounted for.  All of us kids knew that my mom had a hysterectomy at a very young age because she was “riddled with tumors”, but it never occurred to us that this equated to an inherited risk for cancer.  So, please, let’s continue raising awareness, having discussions, and hopefully working towards a cure.

And now, after too much from me, here is my Alyssa:

I am a 34 year old married, mother of three and am a breast cancer survivor that carries the BRCA 1 gene. I was diagnosed with Stage 1 breast cancer in February 2010 at the age of 30.  I found the lump in my breast by chance of all things. I hopped into bed on a cold night in January with my bra on, and the underwire in my bra pressed on the lump in my breast. I did not know that within one month of finding that lump, my life would be changed forever.

Everything happened so fast after I was diagnosed with breast cancer. I was diagnosed with Stage 1 breast cancer, and my cancer was aggressive so my doctors wanted to move fast. All of the doctors I saw, from my nurse practitioner who ordered the ultrasound of my breast, to the radiologist who biopsied my breast, to the first oncologist I met with, were shocked that I had breast cancer. They were shocked because of my age and the family history I gave them, which was little. At the time I only knew of my aunt on my dad’s side having breast cancer, but not the details of her cancer. I knew my mom had a hysterectomy in her late twenties, but it was never clearly explained to me why. My doctors had not had a patient my age with so little occurrence of breast cancer in the family. After meeting with the first oncologist my husband and I were bombarded with information. There seemed to be multiple scenarios, with multiple treatments. None of the doctors were 100% certain of the best route for treatment, because the doctors did not know why I had breast cancer. It was recommended I meet with a genetic specialist.

Meeting with my genetic counselor was one of the best things I could have done. After talking with her, and discussing all the information she could give me, I chose to have the genetic testing. During our meetings I discovered more about my family’s history of cancer, that I was a BRCA 1 carrier, that there is a 50% chance my son and two daughters may be carriers, & there was a 50% chance any of my three sisters could be a carrier. It was discovered my younger sister is also a BRCA 1 carrier. We are the 50% out of the four sisters in my family that carry the mutation. Shera chose to have the DIEP breast reconstruction to reduce her chances of breast cancer. If you are reading this, then you already know of my amazing sister.

With my diagnoses of breast cancer and carrying the BRCA 1 gene I decided that I wanted to reduce my risks of recurrence and elected to have a bilateral mastectomy with reconstruction at a later time, and a total hysterectomy. For me, this was the best choice. I was not hesitant about these choices. I knew I wanted to have my bilateral mastectomy first. I knew I did not want to have my reconstruction done at the time of my mastectomy. I thought implants were the route I would take, but I did not want to deal with the multiple visits to the surgeon’s office while going through chemotherapy and a total hysterectomy. 

When I was done with chemo and recovered from my hysterectomy I went to see a plastic surgeon about my reconstruction. He went into great length of the reconstruction process, my expectations, and answered all my questions. After he left the room I had photos taken of my chest, and scheduled my appointment for pre surgery for breast implants. I thought this was the next step in the plan I had made many months before. This was what was supposed to happen next. So I couldn’t figure out why I felt so sad. Was it because my breasts wouldn’t be as big as I thought they would be? I always wanted to be a C cup if I had implants, and when I was told I did not have the skin for that size after my mastectomy I thought to myself, “Well, why the hell am I doing this?” Or was I sad because after looking at the photos of reconstructed breasts using implants, the breasts looked odd to me. Or was it the reason I knew, but didn’t want to admit.

When I arrived home I talked to my husband about my visit, and when I was finished talking my husband asked, “If this is what you want to do, why are you so sad?” I told him I no longer felt like I wanted to do the reconstruction, but I felt I had to. I felt it was the expectations of everyone else. I read multiple articles, and talked to multiple doctors and reconstruction was always hand in hand with mastectomies. Whether it was at the time of the mastectomy or further down the road.  But after my consultation, I realized that the outcome of reconstruction was not going to be what I had envisioned. So did I really want to go through all of that to only be disappointed in the end? I also felt strongly that I did not WANT to have this surgery. I just didn’t want it. I wanted my body to be left alone. In the end I decided not to have reconstruction.  

I decided the next best thing would be breast prosthetics. I went to my designated prosthetics company and was fitted for the size of prosthetics I wanted.  I figured I would wear my prosthetics during the day, and remove them at night. That only lasted a few weeks. It felt odd having breasts in the way again after not having breasts for almost a year. I enjoyed not wearing a bra, and not having to worry about breasts without a bra on.  I occasionally wear my prosthetics, but I’ve worn them probably twice in the past two years.  

I’ve gone through ups and downs with the decision of not having reconstruction after my mastectomy. My downs are due to a handful of reasons.  I was worried if my husband would still find me attractive without breasts. Would my kids be teased at school for their mom looking different? Will I figure out how to wear women’s clothing and have it still look cute, and not droop in the front where breasts are supposed to fill that area? I find comfort and confidence in the answers I’ve received to these questions. My husband still calls me his beautiful wife, my kids tell their friends, classmates, & whoever asks that their mom had breast cancer, and I can still rock an outfit that I feel makes me look cute!

I am still self conscious at times of my choice, but it’s my choice. Maybe one day I will change my mind. Maybe I will never change my mind. I know no matter what I choose I will always have the support of my husband, my kids, my sister who’s been through her own journey and continues on it, my other two sisters who support us, my family, and my friends.

I’ve attached photos of my scars so you are able to see what my scars looks like almost 4 years after my bilateral mastectomy.

I hope this helps!

~Alyssa

Alyssa after mastectomy

Alyssa photo 2

Alyssa mastectomy photo 3

Alyssa mastectomy photo 4

 

 

Alyssa and John visiting us in Seattle this summer.

 

There are no words for how much I love my sister.  Every time this song comes on, I think of her.

 

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? 

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

Let’s Go Motorboatin’, Boobies!

It’s a week later+, and I’m finally posting an update photo of my areolar tattoos from our second crack at these.  48 hours post 2nd round tattooing, the pigment was holding strong.  A week later…eh.  I can’t add a new photo right now because I’m in the midst of cleaning up a dinner mess and somewhat minding our girls, but the pigment in my tattoos has come out a little here and there, but in bigger and more sizeable spots closer to thicker areas of my nipple reconstruction scars.  It doesn’t look like my skin is completely rejecting the pigment like last time, but there will definitely be areas that call for a touch up.

48 hours after our 2nd attempt at areolar tattoos

I’m still keeping my nipples covered in Radia Gel and bandagedsince the smallest amount of friction is all my skin needs to bleed a little bit, then scab and spit out some more pigment.  But I’m remaining hopeful that we’ll not have to start all over again.  If the outcome to this round of tattooing is more like the first round, I have to say I’m disinclined to give the tattooing a third try.  I’d be happy to say “we tried” and just move on.  It’s not like I’m entering wet t-shirt contests or posting topless photos of myself everywhere.   Well…  🙂

So I just wanted to update the photo batch and let you know how things were looking.  I’ll wait until I’m at the 2 week mark and then add another update photo.  So far, I give the second round of tattooing a B+.  Let’s hope that it remains a passing grade!

Thought this song was fitting given my usual, mostly nude photos and living in Seattle.

Areolar Tattoo Results…Just for Now.

Nice to be back on here!  As the saying goes, “the road to hell is paved with good intentions”.  Every day I think about various things I want to write on my blog and intend to do so every night.  But the sun rises, sets, and I haven’t made time to sit down and commit anything to post.  So here I am two weeks after having my areolar tattoos done and this backlog of thoughts, feelings, and ramblings about my tattooing process.  So I’ll start from the day of the tattoos.

 

I went into the reconstructive surgery clinic nervous as hell.  It wasn’t nervousness about pain – because I still have almost no sensation in my Noobs.  Also, I’ve been through dozen of tattoo sittings and have a pretty well established pain threshold for the whole thing.  I was nervous because I was feeling pretty damn good about the aesthetic of my reconstructed breasts and nipples as they were, and I didn’t want to mess with a good thing.  So, here they are pre-tattoos:

 

Reconstructed nipples before areolar tattoos.

You can see (hopefully) from the photos that the reconstructed nipples alone look pretty convincing as “complete nipples” – or whatever the correct way is to convey, “looks a lot like natural knockers”.  They healed really well, my scars aren’t very pronounced, and I ended up with a good protrusion for the nipple.  The best part was I could wear a tank top (with built in bra) without concern of pigment or protrusion showing through:

Healed, reconstructed nipple

 

Healed nipple displaying protusion

Healed, pre areolar tattoos, not showing through a white tank top.

 

But this was just another step on the road to completion, and here I am forging on and on and on and on!  My reconstructive surgeon did not do my tattoos, which was expected.  I was told well in advance that either a resident or a P.A. would do them.  I totally forget the name of the resident that did my tattoos.  I DO recall that she is Canadian, blonde, sweet, has light hands, good pigment matching skills, and she likes to listen to music during the tattooing hour.  We got acquainted and then moved on with the show.  First she started by finding a circular outline ring that had a circumference large enough to cover my nipple reconstruction scars.  She put removable ink on the bases of them, and then sort of twisted them on for an outline:

Outlines for areolar tattoos, placed with enough circumference to cover scars.

She brought out the pigment trays and started mixing.

Pigment tray post mixing

When she thought she had a good match, she put a little schmear on the Noobie and we gave it a test photo op:

 

Pigment test for color match before tattooing begins.

We were pleased with the color match up, so we moved on with the tattooing.  At my last appointment with him, Dr. Louie gave me a prescription for topical lidocaine but I didn’t use it because I don’t have much sensation where my tattoos were being done.  I do have some returning sensation on the perimeters of the Noobs, but not anywhere near the areolar sites.  So other than some lively discussion and the usual impatience on my part, the tattooing was really a non-event.  That is until I saw the results, with which I was really pleased:

Right areolar tattoo complete

 

Left areolar tattoo complete

They looked good, right?  So I got all bandaged up and was sent on my merry way with some Radia Gel to apply in the healing days, non-stick gauze pads, and Tegaderm strips (to adhere the gauze pads and cover the Radia Gel).

Day 1 post tattooing, all bandaged up, ready for the 1st wash.

Here is where I think things went astray:  the after care.  During my tattoo session, we were discussing what I historically used on my run-of-the mill tattoos during healing and how I cared for them.  After getting my “normal” tattoos, I was lightly bandaged and told to leave my tattoo covered for the rest of the day, wash with luke warm water and gentle soap the following day, and apply a very light layer of Eucerin or Aquaphor for the next 5 days, then lotion as needed for dryness over however long it takes the itching/healing to be complete.  No scratching, scraping, Neosporin, etc.

So when my tattoos were done, I was bandaged up with Radia Gel, gauze, and Tegaderm strips.  The Tegaderm strips did not let my skin breathe at all.  I know that you need to keep an “open wound” covered to prevent infection, but I mean nothing was getting into those bad boys.  Not even oxygen.  I was instructed to leave the bandages on for a day, then remove them, gently cleanse, and reapply.  When I took my bandages off the next day, pools of liquid poured out of my bandages.  It looked to be comprised of the Radia Gel and 80% of the pigment from my tattoos.   I hopped into the shower, used an indirect spray and let the water run over my Noobs, patted dry, and went through the dressing ritual.

Day 1 post tattoos, Left areola, bandages off.

Day 1 post tattoos, Right areola, bandages off.

The Radia Gel is a pretty light/thin feeling product.  The instructions state that it should be applied to the area 3 – 5 times a day.  This is a problem when used in conjunction with the Tegaderm strips.  The strips completely adhere to the gauze and skin and create a seal.  So whenever the gel needed to be reapplied I would have to start all over again with the dressings.  I think that the strips are also too confining, if that’s the appropriate word.  I felt like my tattoos would have healed better and retained some of the pigment had the dressing been more breathable and allowed some ventilation instead of being completely sealed in.  But I wanted to follow the instructions I was given and see how things went.  Turns out, poorly – at best.  I now have very little pigment left in my skin and will have to start, just about, from scratch when I go back in.

Day 3 post tattoos, healing

Day 7 post tattoos, Left

Day 7 post tattoos, Right

Out of all the steps in this journey for things to go a little wrong, I feel like the tattooing was the best place for it to happen.  Had I had some failure at the portion of my breast or nipple reconstruction (like my seemingly endless fear of necrotic tissue), I would’ve probably gone to pieces.  This, fortunately, is an easy fix.  So, I will go marching back into the fray to give areolar tattoos another shot in about two months. Until then, this is what we’re looking like just for now:

 

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

Closer to Fine (Day 97)

I have started and re-started this post several times since my last post.  Blogging is hard when you’re going nuts.  Sometimes the hours, minutes, days, or weeks just meld into one big crazy.  This weekend we had a family emergency/scare.  My mom, who lives in Las Vegas with my sister Tessa, was home alone cleaning the blinds, or something equally weird, on top of a ladder.  She fell off of the ladder (!) and broke her shoulder, arm, maybe her elbow, and fibula.  She has been in the hospital all weekend, and yesterday she had surgery to put a plate and some screws in her arm.  She is doing better, but what a scare.   I inherited the uncanny ability to suffer self inflicted injuries in crazy circumstances from our mom. So what exactly she thought would come of being at the top of the ladder, at the top of a staircase, by herself is a mystery to us all.  But we’re glad that she’s alive and recovering in the semi-comfort of a good hospital in LV.  My aunt Robin, my mom’s sister, is also in the hospital after being rear ended yesterday afternoon.  I haven’t spoken with my Uncle this morning, but I’m hoping that Robin is doing better and at home.

So, it seems that me going in for surgery on Friday will complete the “It comes in 3’s” circle (hope, hope, hope).  I am a little bit more anxious this week with the surgery in my sights.  I’m not nervous about the surgery; I’m nervous about getting our house in order before Friday, completing my errands, and stocking the fridge/freezer.  My MIL, Irene, arrives Thursday night to take care of the girls (and Mike) while I’m in the hospital on Friday, but then it’s back to just the 4 of us on the weekend.  I’m hopeful that this “minor” reworking doesn’t slow me down too much.  I’m basically getting the weekend to recover, and then we’re back in full swing with life and the girls’ activities come Monday.  I’ve not yet had a “meltdown”, but I definitely feel like I’m running out of time before the newpples land.

People respond differently to stressful situations; it’s part of who we are.  My response, learned from our dad, is to do something – ANYTHING other than just get in the hamster wheel and run in circles.  I guess that’s why I’m trying to knock out 1,000 hours of projects, errands, and preparation in 168 hours’ time.  I learned from my Stage 1 bilateral mastectomy and DIEP flap reconstruction process that I am more afraid of the unknown than pain.  Pain can be treated.  When there’s a bunch of unknowns in my future (recovery time, outcome, physical limitations, etc.), I feel like I need to over prepare for the worst.  I guess I’m a pessimist in that manner; I expect and prepare for the worst.  Luckily, in such situations,  my husband is an optomist.  This works out well for our family because it usually means that only one of us is losing our mental capacity at a time.

Speaking of working out, I’m in my last week of post-op-pre-op workouts.  Yesterday, I made 15 horrific attempts at pull-ups, completing only one full pull up.  It was a total bummer, but it gives me something to set my sights on once I’m done with medically prescribed taking it easy. I only have to take 2 weeks off of physical activity, but then I have to limit my work outs until my newpples are settled in.

“If you can’t fly, then run.  If you can’t run, then walk.  If you can’t walk, then crawl.  But whatever you do you have to keep moving forward.”

 

 

 

So, here I am getting closer to being finished and fine…

 

06/18/12 – Frontal

06/18/12 – Noobs

 

06/18/12 – Abd. Scar, left side

 

06/18/12 – Abd. Scar, right side

 

Inserting a bit of prosthetic humor, if you will…

 

06/18/12 – Wonky newpples

 

Almost Total Recall.

06/18/12 – Wonky newpples 2

 

This is where they were ~10 years ago, before they decided to move south…

06/18/12 – Wonky newpples 3