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…

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

 

 

 

Hey Ladies (Day 52)

I just wanted to send out my Beastie Boys love.  MCA, AdRock and Mike D are so much a part of my life soundtrack.  Yesterday was a very sad day for the family, friends and fans of Adam Yauch.  Cancer is a bitch and it is pervasive.  Live a healthy life to try and protect yourself from cancer.  Take preventative measures if they’re available.  But should you find yourself diagnosed, you fight.  For your right.  Alright?

I have a lot of reasons for not posting yesterday.  #1 reason is WordPress surrounded by a litany of F bombs.  #2 reason is exhaustion.  I have just been beat this week.  One of our daughters has been having an allergic reaction to who-knows-what all week; she has had massive hives coming and going.  But I wasn’t terrified by this until Wednesday when she woke up from her nap, said her mouth hurt, and I saw that her tongue was swollen.  She’s now on an alternating regiment of anti-histamines and we’re trying to get in to see a specialist, but a couple of times a night I get up, go into the nursery, and just listen to her breathe.  So, it’s been a rough week.  And then yesterday I was tired times twelve because we all got up early, then I had to take our little lady to the pediatrician, go back home, then to the pharmacy, then to torture hour with Paul, then into the office, then back to home for dinner, baths, life as we know it.

Speaking of Paul the Torturer, I had one hell of a workout yesterday.  I’m still unable to do the exercises I was doing pre-surgery, but that will take some time and a little more physical therapy to get my ROM back to where it was.  However, we did some core work and my core hurt yesterday.  Which meant that I was unable to sit myself up in bed this morning.

I had the DIEP Flap reconstruction, not the Free TRAM Flap reconstruction.  I chose the DIEP Flap for a lot of reasons, but in large part because I was worried about having another part of my abdominal wall compromised.  During pregnancy and after I had our girls, I had Diastasis Recti (because I was the size of Delaware by my 7th month of pregnancy).  It took me until about my 18th month post partum to be able to work my core well and hard enough to close the gap, but I’m not sure if it ever went back to they way it was before I turned in to a pachyderm.  So, long story still too long, I didn’t want to do any more to compromise my abdominal muscles because it took so much work to bring them back together through a lot of exercise and ca$hmoneybling.

In my first 10 days recovering from surgery, I was glad that I’d done so much work strengthening my core and legs before my surgery date.  It hurt so much to use my arms or do anything that involved engaging my chest muscles.  So I relied, as much as I could, on my core and leg strength.  Now, don’t get me wrong, the first week you don’t even want to clear your throat because it’s uncomfortable to tighten your abdominal muscles at all.  But it (abdominal pain) resolves so much faster than the other areas.  The thing that still holds me back so much is the tautness of my skin and the discomfort on and in the area surrounding my abdominal scar.  There were a few times yesterday where I felt like I may split at the seam.  But, I didn’t!  The good news is that I successfully completed 3 set of full sit ups (with an assist).  The bad news is that I completed 3 sets of sit ups and will now certainly be asked to do more. 

Look out below!  NOOBS!

 

 

 

 

 

05/05/12 – Frontal

05/05/12 – Flaps

05/05/12 – Abdomen

05/05/12 – Left

05/05/12 – Right

 

 

 

 

 

Don’t Call It a Comeback (Day 44)

What a day!  Today I went back to the torture chamber with Paul.  It was hard work, harder than it was when I started working out with him.  I spoke with my physical therapist the other day after leaving her a message asking if I was clear to go back to the gym.  She had to make a few additional phone calls herself, but then got back to me.  We discussed things that I could do, what I might be able to do, and things that I should avoid.  Yesterday I was super excited to get back into the gym.  When I was walking into the doors, I was excited.  When I was done working out, I was totally exhausted.

My range of motion is so much more limited than I anticipated.  I think it’s from, in part, how much I have been guarded about fully using my arms.  Even though I’ve been keeping up with  my physical therapy stretches and exercises, I didn’t think I’d struggle so much with the simple things.  Despite having a few dashes of cardio in my workout, the things that got me sweating the most involved me trying to raise my arms.  It doesn’t hurt to raise them, I just have a lot of tightness in certain areas that prohibit me moving them freely and without worry.  It’s a slow and steady work in progress, but you may have guessed I am not a creature of patience.

It was also surprising to find that doing certain motions with my legs (like raising my knees up high and attempting pistol squats) really caused a tugging, strange sensation along my abdominal scar.  We did a few things that included trunk rotations in which I expected to feel a tugging or pulling sensation along that scar, but I didn’t anticipate so much of it while doing leg exercises.  Everything was a challenge, but it’s good to be back at the gym.  I worked so hard to be in tip-top shape prior to my surgery in hopes that it would decrease my recovery time.  I don’t know if it did or had no impact at all, but I’m glad I did it.  Since I feel like the time before my next stage of surgery is quickly approaching, I’m hoping to be in better shape before I have to ease off again (albeit for a much shorter recovery).

Another surprise today:  a little unexpected oozing.  My dreams, like yours probably, are sometimes only loosely tied to my actual, awake life events.  Sometimes, they’re spot on.  This morning, before I got out of bed for the day, I kept dreaming that my abdominal scar was ripping open at different points during my workout with Paul.  In my dream my skin would split open neatly along my incision, but only little drops of blood would come out.  No doubt this had more to do with my fear about getting back into a regular workout and my limitations, but when I finally crawled out of bed I noticed a little bit of blood over my right hip.  I pulled up my pajama top and I have a very small spot (I think where my last drain was pulled) that has opened up a little bit.  There is a small bit of puss coming out of it and it is slightly tender, but it is not like a raging infection.  I was able to send a message to Dr. Liu on Twitter asking him about it.  I wasn’t overly concerned due to its small size, but I also didn’t want to risk leaving a potential hazard for the whole weekend.  Amazingly, on a Friday night after anyone’s normal office hours, he immediately responded.  It sounds like this is just an irritation from a dissolving stitch and should be watched to see if redness developes around it.  If so, then I can call for some antibiotics.  But basically “NBD”, as the young people Tweet it.

Again, totally amazing that I can communicate with one of my physicians about concerns after hours using social media.  AMAZING!  I also bumped into my breast surgeon, Dr. Sara Javid, who performed my prophylactic bilateral (skin sparing, but not nipple sparing) mastectomy.  Dr. Javid is so kind, sweet, and skilled.  We stood in a bakery and talked for a little over 5 minutes about my recovery and how I was feeling and doing really, really well.  She was and is so great to work with; it was really nice to see her again so I could tell her how thankful I am to have been her patient.  I know that this probably sets the bar pretty high for other women who may have upcoming surgery, and I apologize for that.  But all through this experience, I have found that all of my physicians and their staff really want nothing more than to be great at their professions and treat their patients well.  In reading about the experiences of other women who had bilateral mastectomy and DIEP flap breast reconstruction, it seemed like they were rarely able to get helpful communication OR information from their physicians or the physicians’ staff.  And thinking about those women now in contrast against my experience, my heart really goes out to them.  This process is very intimidating, emotional and complicated.  I can’t imagine going through all of this and feeling like my surgical team didn’t or couldn’t support my after care needs.  So, I am grateful to all of my physicians – but as of late Dr. Liu has been Man of Steel quality medical super hero.  So THANK YOU DR. LIU!

I discussed on one of my recent posts the possibility of ordering some prosthetic nipples to see if they would get me a little more solid on nipple reconstruction.  They should be here in 3 – 5 business days, so stay tuned for some false, detachable nipple excitement! My daily dose of medical wonders is below, as always.  Today I included a picture of the sometimes visible dip just below my abdominal scar.  I’m not sure what makes it more noticeable some days versus others, but I tried to get an aerial view so that you could see where the little dip is.  I am doing scar tissue release massages at home which were prescribed by my physical therapist.  Hopefully these will loosen this area up a bit.  Because it’s not as visible every single day, I will only post pictures of it when it seems like someone else would be able to see it.

DAILY DOSE:

 

04/27/12 - Frontal

04/27/12 - Flaps

04/27/12 - Abdomen (see the scar dip?)

04/27/12 - Scar dip just to your lower L of my belly button

04/27/12 - Suture abscess?

04/27/12 - Right

04/27/12 - Left

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

Got Till It’s Gone (Day 39)

I am totally guilty of being a prime example of our generation of immediate satisfaction.  We are all (mostly) spoiled rotten with access to (just about) a litany of information and an entire world (“www”) of potential connections.  So it may seem odd that I was totally floored today when one of my surgeons (Dr. Liu) sent me a message in regard to my concerns about my swelling.  Sweet, right?!  AMAZING!  I exchanged messages with Dr. Liu and have some clarity about my swelling.

I know now that my swelling probably isn’t due to fluid on my left side, which was what I was thinking.  Since Dr. Liu drained some fluid from my left side not long after I was discharged from the hospital, I thought that my left side might have more fluid hanging around there.  But it sounds like my swelling is tissue related and not due to fluid.  Dr. Liu let me know that the swelling will improve when new veins grow into my flap, and that process takes several weeks.  So, game on!  Not that I was giving up on or anything, but feedback and information is so helpful, comforting, and solid.  Nice guy, right?  Again, AMAZING!  And you thought doctors didn’t listen.  Pfffffffft.

Speaking of amazing, today was it for Seattle; such a sunny, gorgeous, fun day today.  We started our morning off with family breakfast at home (just like everyday), and then we headed over to our friends’ house for a play date and brunch.  Our friends, Heather and Jonathan, have an amazing house in Magnolia with an unbeatable view of Puget Sound.  They also have a specimen of a cutie pie son whom our girls had a good time playing with.  These are newer friends to us but we really, genuinely enjoy their company.

We coordinated this play date before I had my surgery.  We put it tentatively on the books because 1) we wanted to get together again and needed it scheduled, and 2) I had no idea what I would feel like at this point when we set the date.  I told our friends that I was having surgery, but I didn’t tell them what kind of surgery.  I am a fairly extroverted and open person, but I feel like discussing and taking people with me through this process isn’t for everyone.  It is very personal and some people are put off by the gory details of surgery and recovery.  Being that we’re all just getting to know each other, I didn’t want to unload this on them.  So when we were getting ready for our play date today, I found myself slightly anxious.  I tried on a couple of things and was thinking, “Does this outfit say post-op, nipple-less, reconstructed noobs?  Do I look like myself when I’m wearing this?  Do I look like I feel well and frisky and not patched together in this?”  I ended up wearing a jumper that kind of matched the girls’ outfits, which wasn’t at all embarrassing until I typed that just now.  In short, we had a great time together.  We didn’t talk about my surgery, because we (Mike and I) are helicopter-ish parents and our kids were being normal kids and we were trying hard not to freak out.  (This all has a point that I will get to when I’m done blabbering.)

When the girls awoke from their afternoon nap at home, we went back outside and took them to play with our neighbors’ two sons.  The husband, Allen, was in a skiing accident about a month before my surgery and his Achilles was ruptured.  So we’ve both been in some stage of recovery for at least 5 weeks, but him much longer than me.  Betsy (the wife) and I got a chance to briefly talk about my surgery and recovery.  She didn’t know which type of reconstruction I decided to do, and I told her about the DIEP flap and showed her my abdominal scar.  We discussed the sweet, sweet benefit of having my “marsupial pouch” surgically removed and turned into noobs.  She was also kind enough to tell me that my noobs looked “fantastic”.  Being that I was wearing a probably-too-tight-for-31-tshirt without a bra, I took this as the highest of compliments.  The conversation went on for a bit about the steps I have left to complete and the decisions to be made, but it was a nice chat between women.

When we came home, I knew that I wanted to really emphasize something in my post tonight.  Pre-surgery, I was so sad and anxious about what my reconstructed breasts were going to be like.  I went through a period of mourning for my natural breasts (and nipples) and was terrified that no one would ever say a nice thing about my boobs.  Actually, I was more worried that they would notice that these are not my natural breasts.  Not like I planned on walking around topless or anything, but I was seriously worried that everyday, in my clothes, people would be able to see and tell that I have reconstructed breasts.

And now that I am on the other side of it, I feel so excited about not having to worry about WHEN I will have breast cancer and the fact that my surgeons did such an amazing job with my mastectomy and reconstruction.  Other than a few extra pounds, some nipples and sensation, and an elevated risk for breast cancer – I don’t feel like I’ve lost much.  I certainly don’t feel any less feminine or sexy, which were big concerns of mine pre-surgery.  I feel I’ve gotten a lot of benefits out of this process.  Again, I no longer have a frighteningly high lifetime risk for breast cancer.  I no longer have the pocket of twin skin on my abdomen, and my previously full – then flat – and now full again – boobs look good.  Or, as Betsy said, “fantastic”.  Or, as I like to point out, smaller; firmer.  While I do have a large scar on my abdomen, I don’t mind it.  I have a sufficient amount of stretch marks to keep me in a one piece.  So, in closing tonight’s post, I just wanted to follow up on my first few, fear riddled posts and let women know that this is not as scary, freaky, alienating, un-sexy, or ugly as I thought it was going to be.  Day 3 in the hospital was a little bit of all of those things; but Day 39 is pretty damn good.

P.S.  I am still undecided about my nipple reconstruction.  I will touch on that tomorrow.

“I’ll take the Daily Double (dose), Alex.”

04/22/12 - T-shirt time!

04/22/12 - Frontal

04/22/12 - Flaps

04/22/12 - Abdomen

04/22/12 - Right side

04/22/12 - Left side

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.

I Will Survive! (Day 32)

Sorry for being a horrible (even for a newbie) blogger.  This has been an oddly busy, but not super busy, weekend.  My husband has a case going to trial on Monday and I’m still hobbled.  So I’ve been trying to do more “solo parenting” this weekend, except for heavy lifting, while still recovering.  It is hard and exhausting trying to do things with T-rex arms.

Mike was able to sneak away from his preparation responsibilities today to go to the park with the girls and me this morning.  I still cannot push (or pull) anything that’s heavy, and our enormous double stroller with the girls is probably over 70 lbs, so Mike has to go with us everywhere if the stroller is involved.  This (no pushing/pulling) is a specifically stated restriction on my discharge paper work, but I admit I have attempted a lot of the things I was told not to do just because I’m foolish and a horrible patient like that.  I haven’t tried to push the stroller with the girls in it, but I did use it in an attempt to move some stuff from my car to the front door one day, and just having a few little things plus the weight of the stroller was too much.  I ended up putting everything back in my car and asking someone else to get it for me later.  So I haven’t tried using the stroller again since then.  I also cannot vacuum because I am not strong enough to pull the vacuum back and break its suction with the carpet.  It isn’t pain that I feel (because I don’t push myself that hard during these experiments), but it’s a definite, strong, discouraging sensation outside of and below my noobs, as well as in my chest in the area between my clavicle and the beginning arc of my bust line.

I did have an “OH NO!” moment at the park today.  Our daughter, Olivia, was climbing up this wall that she mastered long ago on the jungle gym.  I was standing behind her in case she fell but not really thinking she would fall; but she did fall.  Instinctively, I reached down, grabbed her and picked her up before she hit the ground.  The good news is that I was able to grab her before she hurt herself.  The bad news is that I think I injured myself in the process.  She is at least 30 lbs; I am not supposed to be lifting anything over 5 lbs.  When I caught her, I felt a pain just below my left flap near that incision sight and also in my under arm area.  With the weight of her in my arms, I felt my lats move quickly and engage, and it hurt.  To be honest, it still hurts.  I walked over and told Mike what happened.  We were both relieved that neither Olivia nor I were hurt, but I’m definitely not feeling as well as I did this morning.  Over the course of the day, my discomfort got worse and turned into full fledged pain.  I was going to take some pain medication today and nap while the girls took their nap, but I had stuff to do around the house and didn’t have an opportunity to lie down and rest.  I will take my pain medication before bed tonight and talk to my surgeon about this incident and my pain tomorrow morning during my follow up.  That being said, nothing hurts like that first week; not even close.  This is just a bit of pain that I shall certainly survive.

As for the small indentation that developed underneath my abdominal scar yesterday, it has come and gone throughout the day.  I  think it’s probably related to me being bloated but will ask tomorrow.  It is interesting to see what my abdomen would look like around my scar if I put on extra weight; bad news. There aren’t any new developments as far as my healing progress is concerned.  My noobs are still peeling and I’m itchy from it; my left side has still gone Dolly Parton rogue on me; and my abdominal scar is almost 100% Dermabond free.  So, if you’re interested, take a peek.  If not, take leave now!

 

 

 

04/15/12 - Frontal

04/15/12 - Flaps

04/15/12 - Abdomen

04/15/12 - Left swelling ct'd (a/k/a - Mt St Helens pre-eruption)

04/15/12 - Right side

04/15/12 - Left side

 

 

 

 

 

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