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

Praise You (Day 57)

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

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

 

WATCH OUT!

 

 

Day 3 in the hospital.

03/18/12 – Day 4 in the hospital

Right side of my body, 5 days post op.

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

Week 1 / Day 7

 

05/10/12 – Frontal

05/10/12 – Flaps

05/10/12 – Abdomen

05/10/12 – Right

05/10/12 – Left

05/10/12 – Right edge of abdominal scar

05/10/12 – Left edge of abdominal scar

05/10/12 – Belly button

05/10/12 – Nipple site

 

 

 

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

I Touch Myself? ! (Day 35)

Don’t get the wrong idea!  Today was my first day of physical therapy, where I learned about the “Self-Administered Manual Lymphatic Drainage Massage Technique” (herein after “SAMLDMT”).  I will return to this later and tie up my reason for my post title and why I thought of the Divinyls during PT.

First off, I am still unable to add any new progress photos to my blog.  I have been trying to add my progress photos from yesterday and pictures of my post surgery swag, and all I’ve been getting is this screen where it shows my new media is uploaded but “Crunching” followed by “Internal Error Message” then a sea of nothingness and frustration.  I will keep trying, though.

My physical therapy is at the Seattle Cancer Care Alliance.  My breast oncologist and surgeon, Dr. Javid, and I thought it would be best to have PT there since they deal with post-mastectomy and reconstruction patients all the time.  As I wrote in my post last night, I made my physical therapy appointment for first thing in the morning today.  This was mostly because I was worried that PT was going to be physically taxing, I would have pain and/or more swelling in the time after, and I would want to call or get in to see someone at the UWMC.  I couldn’t have been more wrong, which is nice. My physical therapist, Rachel, had me lie on the table and go through several arm movements so that she could measure my range of motion and limitations.  She also had me push and pull against her arms to test my strength on both sides.  She then slowly took me through a series of stretches and motions that I should do at home over the next few weeks to increase my range of motion.  She also showed me how to do “Scar Tissue Release” massage for areas where my abdominal scar is very restricted.   And then we went over the lymphatic system and the SAMLDMT.  I will focus my massages on the axillary lymph nodes, but at times when my swelling is increased (or I just want to move more of my fluid around), I should include the Inguinal lymph nodes.  Here is a reference image:

I didn’t hear the Divinyls until this point.  I remembered when my sister, Alyssa, was talking to me about her troubles with her seemingly incessant lymphedema and how she’s supposed to do these massages to decrease her swelling.  (NOTE:  I don’t have lymphedema; my lymph nodes were not involved in my surgery.  I simply have excess fluid in the area surrounding my lymph nodes on my left side.)  She told me that she was at home doing her Inguinal massage in bed one night and her husband walked into their bedroom and gave her a sideways glance.  If you’re lying down, in bed and doing this massage, the Divinyls will start playing in your head.  Not because you’re doing anything other than Inguinal massage, but because to anyone other than you that is exactly what it looks like you’re doing.  Don’t believe me?  You try it out and let me know how it goes.  I digress…

Rachel finished up giving me my instructions and reviewing the movements, massages, and techniques with me.  We decided that I would come back in two weeks for a progress check and to see how my ROM improves.  If it is much improved, I get to add strength building to my next appointment.  If that goes well, I get to go back to the gym (with limitations), but still have to go to physical therapy for 2 more sessions after that appointment.  If I don’t show much improvement after 3 PT sessions, then I will continue going to PT and not go back to the gym.

While this all seems like a long and drawn out schedule, it really isn’t long after my currently-scheduled-final PT appointment that I’m probably going to have Stages 2 and 3 of my surgery process done, which takes me back out of the gym and physical activity for a few weeks.  Time flies.

I wanted to announce that today I learned of my first non-family member or friend blog reader and follower!  She is just beginning this process and has a blog herself.  It is so strange that, to me, my recovery has gone so fast these past few weeks.  But when I was in her position (trying not to lose my mind and start planning), it seemed like this day (5 weeks post-op) was an entire lifetime away.  In some ways, it was another lifetime away.  I am now breast cancer risk reduced, through the initial hurdles of recovery, and on my way to semi-normalcy before the end stages of my reconstruction.  Then again, 35 days is a flash in the pan.  I can clearly recall and even feel the anxiety and heaviness in my heart in the last few days before my surgery.  The morning of my surgery I even got up earlier than I needed to just so I could cry before my husband was awake.  I felt alone in a lot of those moments despite knowing full well that my family and friends were here for me.  I was so worried about what life would be like in this reconstructed body (pretty good!, BTW).  I was also so worried about the impact all of this was going to have on our family as a whole and not just myself.  But here we are, making it through the recovery process and getting back to our day-to-day.  And it feels SO phenomenal.  So, maybe read along with her as well and pass the word on in case there are more of us out there scouring the Internet for information late at night, losing our minds, and planning for the rough days to come…

“Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.” – Ferris Bueller, wise young/old man.

Island in the Sun (Day 21)

Today was another surprisingly, fortunately nice day sans precipitation…after a few hours.  The girls went out and about (in their best princess  gear) to play, and I stayed around here being gimpy.  Well, I was gimpy for a while and then I tried my best to get myself together and do something productive.  I managed a few, small chores around the house (put some laundry away, put some more laundry in the washer, straightened up the kitchen) and headed out for my exercise.  Today I decided to get back on the hills and make sure that I’m doing my part to keep what’s healthy, healthy and to get what’s healing healthy. I gathered some inspiration from Mike, my husband, after he told me he ran up this huge hill by our house TEN TIMES this morning before work.  I managed to walk up it once today, and was pretty proud of myself for that accomplishment.

04/04/12 - Up big bad Lee Street

I took Lake Washington Boulevard around our neighborhood and through the “loop” which is a popular pedestrian and cyclist path.  It was a bit chilly out, but it was a nice temperature to be walking in, and there was sunshine to make everything better.  I made it to a lookout point on Lake Washington Boulevard and decided it was time to take a breather and rest up for the long walk home.

04/04/12 - Lookout @ Lk Wa Blvd

I decided, after much consideration, that today would be a good day to try to get back into the driver’s seat.  I successfully drove myself to and from my brow waxing appointment without incident.  Not to say (write) that it wasn’t without its challenges, but I came home collision free.  First and foremost, I embarked on this journey pain medication free to ensure my safety and that of of my road warrior companions.  Secondly, I drove for probably a total of 3 miles.  I had to complete 4 turns to get to my destination and had no crazy parallel parking challenges, which would’ve certainly done me in.  My range of motion is well enough that I can keep my hands and 9 and 3 (instead of the old school 10 and 2), but it’s not well enough that I can turn the wheel round with only one hand.  I felt like a rookie driver doing the hand-over-hand turns you learn in Driver’ Ed classes, but today old school worked well for me.  So, everything with my reintroduction to driving went well.

Today I also decided I would try to forgo my mid afternoon nap I’ve been taking since my surgery, which hasn’t worked out so well for me.  Now I feel so overly tired that I can’t sleep (it’s currently 11 p.m.).  I’m hoping that this is just a slight hiccup in my sleep schedule, but I’ve never been a really good sleeper.

I received a return phone call today from Dr. Louie’s office trying to follow up on the physical therapy scheduling debacle from yesterday.  The nurse that I spoke with couldn’t tell me whether or not I was cleared to start PT this soon, so I am waiting to hear back from the nurse after she gets in contact with Dr. Louie, which I think is going to probably be about 48 hours since he has surgery on Thursdays. To be honest, I’m not in any rush at this point to add more discomfort and fluid build up to what I already have going on here.  I think that when I first spoke with Dr. Louie at my consultation, he said that patients typically start PT around 4 to 6 weeks.  Even though that sounds like an eternity away from right now, I can manage some patience and hope that fluid absorption on my left side comes with that as well.

As far as pain today, I’m having a lot of discomfort and a little bit of pain.  I’m trying to only take my pain medication when I go to bed for the night, and am alternating ibuprofen and Tylenol during the day for pain control.  It’s not horrible, but it’s not without its drawbacks.  I still have pain in my sternum and sound a little breathy when I talk too much or too fast (because it’s still uncomfortable to take deep breaths sequentially).  My fluid build up on my left side is very uncomfortable, tender and has me very guarded on that side.  But, I’m making it through the days.

And now, your daily dose of medical magic…

04/04/12 - Frontal

04/04/12 - Flaps

04/04/12 - Abdominal incision

04/04/12 - Left side

04/04/12 - Right side

Fools Rush In (Day 18)

Today wasn’t a very eventful day.  We had one hell of a windstorm last night, so I was up late waiting for our house to blow apart in a million pieces.  I was awoken by the wind at about 2 a.m. and up for almost a full two hours.  After finally falling back asleep, I slept a little past 7:30 a.m. this morning.  I am not certain if I did something in my sleep or if my recovering body is suffering setbacks, but I awoke this morning completely stiff and sore in my upper left body.  From clavicle to scapula and down to my fingers, I feel like the Tin Man after a month out in the rain – but only on my left side.  I got up and inspected myself to see if my left flap was more swollen, bruised, or had to turn to stone (like I felt), but nothing changed over night.  I think I am not cleared for physical therapy until I am 4 weeks post-op, but I feel that with all of this stiffness, soreness, and extending immobility setting in I’m going to need much more than physical therapy to fix me.

I didn’t do much physically today because of this weather.  It is probably fortunate that I didn’t embark on my neighborhood walk today since I forgot, for the entire day, to put on my abdominal binder.  I failed to realize that I hadn’t worn it all day until I was getting up from our couch tonight and was trying to figure out why I was having pain in my abdomen.  My plastic surgeon, Dr. Louie, and the PS resident in Dr. Louie’s absence (Dr. Liu), both told me to wear my binder to support my incision.  I didn’t think that it would make such a difference, but now I know.

These past few nights, I’ve had some shooting pains on the underside of my “flaps”.  I’m not sure, but I think it’s because they’re healing where my doppler wires were recently removed.  The doppler wires are implanted during the DIEP flap reconstruction surgery.  While in ICU, my nurses (and surgeons) would come in every couple of hours and press on the underside of my reconstructed flaps where the doppler wires were.  The wires were hooked up to a speaker, and when pressed on you could hear the “whoosh whoosh whoosh” of blood flow into and out of the flaps.  This is done to ensure that the transplanted blood vessels are not failing and that the blood is successfully flowing.  The doppler wires are left in, even after being discharged, in case there are any complications (like necrosis) during recovery.  When I went in to the plastic surgeon’s office for my follow up, the wires were removed because I was complication and necrosis free.  On the underside of my flaps, I have these little holes that are slowly closing from where they entered the flaps.  I think this is where my discomfort is coming from, but what do I know.  I can’t even see under there.  I have to get a hand mirror or rely on my phone to see what’s going on in that underworld.

Today was also our last day of having immediate, on hand help from family.  My sister, Angie, returned home to Las Vegas today leaving us here to swim with the little fishes.  Before she left, Angie made about 200 lbs of chicken, meatballs, stew, and a lot of other things sitting in our freezer for when we run out of friends that are willing to feed us.  I really appreciate that my sisters took time out of their always busy lives to come here and care for me and my family.  It isn’t easy work to come into someone’s house and play by their rules, do things their way, and be humble about it.  But my sisters did just this , and more, for me, Mike and the girls; and, they did it well.  I am thankful for their love, time, help, food, and nurturing of my little family. I am also thankful for my friends that continue to take care of us, bringing us food, well wishes, and happy visits.

This week is going to bring new challenges since my sisters are gone, but hopefully they are injury free challenges.  We’ll see.  Hope for the best!

And now for the daily dose of forward progress…

04/01/2012 JP Drain puckered

04/01/2012 Left Doppler site

04/01/2012 Right Doppler site

04/01/2012 Bruise improving?

04/01/2012 Abdomen and new belly button

04/01/2012 Frontal