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!

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

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

 

 

Day 41

Tonight’s post is short and photo free.  It’s been a tough day for a variety of reasons.

My left shoulder, clavicle and sternal area is afire with discomfort today.  The girls had parent & tot swimming lessons again this morning, and Olivia took out her unwillingness to participate on, what felt like, only my left noob and abdomen.  Being that flailing limbs are innate to swimming,  I can’t complain much that I took a few body shots.  But the after effects are massive today.

I also had a lot of wrangling to do with the girls before Mike got home from work.  They woke up feisty and just wanted to pull each other’s hair out, so there were many time outs and subsequent apologies issued this evening.  My physical therapist told me that I’m probably having so much shoulder and clavicle pain because I’m over compensating for my limited strength and ROM on the left side by using my entire shoulder girdle to do movements that usually only involve my shoulder itself.  Even after doing my prescribed stretches and a little self massage, I’m throbbing and my swelling is really uncomfortable.

Today I scheduled my nipple reconstruction for June 22.  When speaking with my reconstructive surgeon’s scheduling assistant, she wanted to bring my attention to the fact that not all of this procedure will be covered by my insurance.  That conversation led me to make about 12 other phone calls today between my insurance company and the hospital, wherein I found out that my insurance is (currently) not paying the claims submitted for my DIEP flap breast reconstruction.  There is an appeals process that we have to navigate our way through, but if my insurance denies payment we possibly have a long battle ahead of us.  I have thought and talked so much about this today that I’m just exhausted on the various issues and potential avenues that all of this could go through.  So, now I am even less interested in having my nipple reconstruction than I was before.  Mike has encouraged me to forge ahead.  I think that his position is subject to change once all of the related bills gets here.

For now, I’m hoping just to get to bed and not dream about selling my kidneys on the black market to pay for all of this.

 

P.S.  Check out the “baby bundt cakes” and “skin sombreros” here.

Gah! (Day 40)

Confession:  I type my posts in Word and then cut and paste them into WordPress.  I just cut and pasted lost tonight’s post after 40 minutes of working on it.  I’m SUPREMELY annoyed with my own idiocy and out of energy.  I promise to reinvigorate my passion to blabber about reconstructed nipples, Stage 2, and scar revision.  AAAAAH!

UPDATED:

Today was the last of beautiful days we’ll have for probably a week (or longer).  The girls had music class this morning, and then we all went to our “secret beach,” which is actually just a place with public shore access.  It has sand, instead of sharp and/or slimy rocks, it’s small, it’s close, it’s often populated with people that want to take their kids to the water.  We had a great time, came home, the girls took a great nap, and then we commenced Round 2 of sun loving fun on our roof.

Pool party

I was able to take my walk and do about 4 miles today with the gorgeous weather.  I decided to brave a light color tank top with the warm weather (and no areolæ to tattle).  I think that UV proof clothing will be in my future because when I got home and showered it looks like part of scar around my nipple sites are a little sunburned.   While a little worrisome, it doesn’t hurt or look too horrific – just pink-ed.  Speaking of nipples, I called my plastic surgeon’s office last week and asked them if they could send me some literature about the nipple reconstruction and areolar tattooing.  Unfortunately the paperwork I received is really no more than after care instructions.  You can click below to view the literature I received from my surgeon’s office regarding nipple reconstruction:

Nipple Reconstruction

It is safe to say that whatever information I receive about this process, it is deemed either questionable or insufficient.  I have been poking around the internet looking at all kinds of things related to these procedures since I decided to have the BPM and reconstruction.  First off, I’m not sold on the nipple reconstruction.  I was 200% positive I wanted to have the prophylactic mastectomy, but I didn’t and still don’t feel the need to have non-sensory, aesthetic nipples.  Secondly, I’m a putz.  I’m worried that I will have some sort of every day, clumsy spill just after nipple reconstruction and tear one (or both) off or do something so that it flattens out completely and negates the nipple reconstruction.  I would be fine with having just the areolar tattooing and live without the nipple itself.  In the early stages of researching, I even found prosthetic nipples that seemed like a good idea, but the colors are all wrong for me. I have read here and there about the procedure and the complications.  I have watched YouTube videos about how the nipple is constructed, read forums about the healing process and timeline, and none of them seem so horrible.  But I’m still scared of damaging the nipples, necrosis, infection, sitting around for 4 more weeks.  But, I feel like I should persevere and see it through.  Why?

I have two daughters, and the BRCA1 genetic mutation is inherited.  Each of our girls has a 50% chance of inheriting this gene and being in my position in 20 years, maybe less.  My sister, Alyssa, also has two daughters facing this same situation.  I want to see this process through in case any of them turn out to be BRCA1 positive and have to think about all of these things I am now going through.  While it is my highest of all hopes and dreams that none of them have inherited the BRCA1 gene, I want to be ready, just in case, to say, “I have done this; it was scary, but not as bad as thought.  Look at me now.  Look at my reconstructed breasts.  Look at my happy, healthy, breast cancer free life.”

 

 

DAILY DOSE:

04/23/12 - Frontal

04/23/12 - Flaps

04/23/12 - Abdomen

04/23/12 - Right

04/23/12 - Left

Somethin That Means Something

Tonight’s the night babies! Look at me getting ready to be filleted tomorrow morning! I’ve been meaning to sit down and write, at great length, about what a complete shit show I’ve been the past two days. But I’ve been busy being a shit show. Monday was the last day of my “regular” eating because today I needed to eat only light foods that are easily digestible so I don’t have to have a super sexy enema first thing tomorrow. HOT! So on Monday I really got wild and had the mini tacos from Rancho Bravo on Capital Hill. Today I’ve had bran muffins, bran cereal, fruit salad, a baked chicken breast and some couscous. I feel like a geriatric on death row. I also had a chance this morning to work off some of this anxious energy this morning with Paul, my trainer. He took it easy on me, but it was good to work some of this crazy out before I continued on with my day. I spent the rest of the day trying, mostly, to feel really prepared to leave our girls for 5 days and have someone else care for them. Sad. We hung out at home, my friend Haydn braided my hair for me so it’s out of my face for surgery, and then I spent as much time with our girls as I could before their bedtime. I tried not to be too anxious or weepy around them because they already know something else has turned me into a crazy ass this week. And that’s not what I want. I want them to be happy, carry on with their days, and miss me a little bit…but not miss me like I’m going to miss them.

I check in at the UWMC Surgery Pavilion tomorrow morning at 5:30 a.m. Before that time, I need to finish packing my surgery stay bag, find something to put on my Kindle, figure out a way to smuggle my phone and charger in with me, as well as lozenges (for the sore throat post intubation), a toothbrush, a red velvet cupcake from Trophy, and some lip balm! Apparently I can’t take any of these things with me because they’ll “get lost” while I’m in ICU for the first 48 hours. I take this to really mean, “Someone here is a kleptomaniac and will steal your breath from your sweet lips while you sleep if they can. We don’t care to find out who that someone is. Also, no pictures.” I can’t remember the last time I’ve gone more than an hour without my lip balm. Do you think I can pay someone to apply it for me whilst I’m under? I’m less than 8 hours away from my check in time and I’ve obsessed over the many other things in my life so much that I’ve now narrowed it down to worrying about lip balm and smuggling electronics. Let this be a good thing.

I feel like I’ve dedicated enough time to mourn the boobs, worry about this being my first surgery, and worry about my family’s well being while I’m in the hospital. Will I feel like this in the morning? I don’t know, but it’s where I am right now and I’m just trying to go with it.

Please ask the universe not to let any freak accident, Grey’s Anatomy season finale type shit go down during my surgery. I am full of life and doing this to live a LONGER and HEALTHIER life. Smooth sailing only. Quick recovery included.

I won’t have my phone while I’m in the ICU, so I won’t be able to easily contact or communicate with anyone until I’m moved into the regular recovery unit. So, until that time, thank you so much to my friends, family, and everyone for your kind words of support and encouragement. Thank you to everyone who has brought us food, volunteered to help with our girls, offered to come over and take care of me, or anything else that I’m forgetting. Thank you to everyone who didn’t notice me giving you creepy “goodbye boob hugs” and squeezing a little too hard and too long. Or thank you for noticing and not caring, or being kind of into it and just letting it happen.

I wanted to say something meaningful here before this part of my life (natural boobs) was over and the next part of my life (no more than 7% risk of breast cancer!!!! + reconstructed boobs) begins. Hopefully I’ve achieved that much with my whopping 6 (or 7?) posts. If not, stay tuned. I’ll come up with something. And if you come see my husband and my girls while I’m still in the hospital, tell them “Shera/Mommy loves you!”

Yeah, my friends they are so beautiful.

On Saturday night, we had a wonderful Boob Voyage party and said “sayonara” to my boobies with a gaggle of friends.  It was something that I had thought on and off about doing for a while.  When my anxiety about my surgeries continued to grow, I felt the more I talked about this whole thing, then the more I would talk the fear out of myself.  I didn’t want to pick up the blower and start dropping my Debbie Downer news on everyone one-by-one, so I decided to have a party and throw a little fun and “Fuck it” at the whole situation.  And it has worked.

There was such a great mix of people from my life with us Saturday night.  I won’t rattle off an entire list of attendees, but there is a handful worthy of specific mention, because everyone should know someone like them.

Of course my wonderful husband and wonderful daughters were here with me.  Mike is and was a wonderful host, husband and father.  He was gregarious, doting, and fuzzling with the best of ‘em despite a long hiatus from the sauce.  He really brought his “A” game, but that can be expected of him.  He’s very competitive.  The girls decided to wear their “beautiful gowns”, which are actually just new Spring skirts I bought them that morning, and had a great time with the flurry of activity and new friends to play with.

My friend, Bill, who I have known the longest, was here with his amazing wife, Kelly, and their two kids.  I met Bill when I was 19, still in college, and dating his then Navy shipmate.  The seaman and I eventually split up (but remain dear friends), and I got to keep Bill in the dating divorce.  He is a great guy.  (That is an understatement.)  And then came Kelly, who is just a New Jersey gem of woman (he’s from Pittsburgh), and she swept everyone who knows Bill off of our feet.  We have seen each other through some funny and unfortunate situations.  Bill and Kelly have known (by proxy) my beloved boobies through their prime, into the Great Deflation of 2010, and into the present farewell stage.  I look forward to them seeing me through the new set, and well into our deep set wrinkles.

I met Bensen a few years after meeting Bill.  We all worked together at an indoor sports facility in Redmond, but our friendship didn’t really come into bloom until maybe a year or so later.  Bensen is an amazing person and friend whom I am so lucky to know and have had in my life through so much change.  I look back at the people we were when we met and the people that we’ve become over the years, and I’m so proud of us for being so good to each other through it all.  Everybody should have a Bensen, but this one is mine.  Bensen’s ladylove is Cate (the great!).  Cate is a California Gurrrl transplant and, as of very recently, has become our part time nanny.  She is a phenom of a woman, friend, and soul.  Everyone who meets her likes her.  TRUE STORY.  I am glad that Cate and Bensen are an item, and lucky to have them both in my life.

Monell is part of our trifecta, f/k/a the Triple Threat, f/k/a The Breakfast Club.  I met Monell through Bensen, who were hockey buddies and friends.  Over the years our friendship has gone from casual, to buddy, to the next level.  When I was pregnant and into my post partum period, Monell was jokingly, on more than one occasion, referred to as my stunt-husband.  She is reliable.  She is and has been here for me.  She has an excellent ear, offers a terrifically supportive shoulder, and is also a surprisingly great keeper of secrets.  Not that I have any; it’s just the word on the street.  She has been called on to take me to one than more doctor visit, and one definitely scary trip to the emergency room.  She has been a great best friend to me.

Jenna used to be my #1 co-conspirator in my early 20’s.  We got into a lot of trouble together, but that is a great base for many long lasting friendships.  We don’t see each other very often, but when we do it is a sweet embrace that lasts a long while.  As my surgery date has loomed closer and closer, she has been a much more frequent flier on this roadside.  Some friends are just good like that.  They sense a heavy weight, and they come around to lend support as often as they can.

Muh’ bookclub Boos. Everyone should have a book club like I do.  These ladies have filled more households with amazing food, remarkable gossip, hilarity, and genuine warmth than you find on network television.  You generally cannot find this type of camaraderie amongst a group of women who have come together very perchance.  I was a late arriver to the book club but these women welcomed me with open arms, full plates and goblets, and friendship.  I am lucky that once a month I get to muck it up amongst this group of remarkables.  Thank you so much letting me be a part of this monthly communion and all of the belly goodness (food, drink, laughter) you bring me.

The Jacobsons are just good people.  We met Thomas in 2006 when my not-yet-then-but-now husband was looking for a contractor to remodel his (our) first home.  Thomas did a tremendous job in a really difficult situation, and he has been here ever since.  He has since built my husband’s office and, just recently, the house we are living in now.  Along with Thomas came his outstanding crew, both workers and family.  His wife, Holly, is a youthful yet old soul.  She is easy on the eyes, a whiz in the kitchen, and an absolute joy to be around.  She oozes love and nurturing.  Or at least I feel like she does.  Maybe she just really likes me and only me and not you.  She seems so worldly to me, and is, what I imagine to be, an A+++ mother and wife.  Thomas’s work crew is also tremendous and impressive.  The job foreman at our current house identifies as an existential humanist.  That is not something you’re used to hearing from a contractor.  It seems that everyone that has something to do with Thomas has picked up on his energy and his intent, and that is why they are all so great.  Thanks for sharing your greatness with us.

I didn’t specifically call out these people to make anyone else feel left out or like their friendship is held in any less esteem.  It’s just that these people have been extremely good to my family and me.  And while I can’t say thank you enough for the love, friendship, and support that they have provided (and continue to offer) to adequately reflect my appreciation, I can publish this post on the World Wide Web and make it searchable on the Internet for all to see.  And envy.

If any of you are feeling competitive for a position on my next friendship blog, I created a webpage that lists days, times, and things with which we’ll need help while I’m high as LiLo.  The URL is http://www.whatfriendsdo.com/SheraPRocks.  You will have to create a log in and password yourself.  Then contact me if you want to sign up (because you’ll need a password to sign up and verify you aren’t on the FBI’s Most Wanted list).  We may need more help than is listed from 3/26 through 4/6.  Cate is going to be out of town and our previous nanny said she would come back to help.  But that won’t be the case if she finds a new family to work with before that time comes.  We’ll keep you posted.  AND THANK YOU SO MUCH!!!