Giddy on Up! (Day 42, woot woot!)

Apologies for late post; I thought my entry uploaded last night but received an email today and found out otherwise!  I’m having a hard time with my WordPress these past two weeks.  I will phone a friend for some tech savvy advice tonight!

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Oooooh, today.  Today we didn’t get to embark on a wild Pacific Northwest adventure because of this Seattle springtime drizzle.   It’s not bad, because it was kind of warm today, but the girls have out grown their rain boots and waterproof pants.  So, we kept it indoors today.

I’m still pretty tight and sore from our adventures in swimming yesterday.  I did my physical therapy stretches this morning before I got out of bed (because I woke up with the area around my shoulder and clavicle feeling tight).  I did go for my usual walk, and it seemed to fly by because my head was full of all things related to crazy.  I am having a hard time deciding on what to do, with finality in mind, about my nipple reconstruction.  I feel like since I’m still in the process, I should go for it and see everything through to the end.  Meaning that I would get the nipple structure itself made and not just have the areolar tattoo.  But I feel so ambivalent about the nub.

It would serve no purpose other than aesthetics, but right now I really like wearing shirts and tank tops as of late and not feeling like I need to put something else on because I have no nipples.  I am more sold on the areolar tattoo because I feel, that in my own eyes, my noobs look weird with just the Barbie look.  When we were at the pool yesterday, it was really my first time back in a locker room with other women.  I found myself looking around (and probably looking inadvertently creepy) to see if anyone was looking at me.  I feel like if I have the areolar tattoos, it’s less likely that my reconstruction would be noticed.  Does that make sense?  On the converse, I worry that the nipple sites as-is would be too large if I just had the areolar tattoo.  That’s a lot of surface area to cover, and I would definitely be Silver Dollar Shera.  (The nipple reconstruction surgery decreases the surface area of the nipple site.)

I also have a habit of thinking about the absolute worst-case scenario always happening to me.  It plagued me during the entirety of the build up to my mastectomy and DIEP flap reconstruction.  So, of course, the only thing I can focus on with nipple reconstruction looming ahead is that I will do something to injure them and they will both end up necrotic and fail or flatten out.  The Internet is no friend when it comes to counteracting pessimism.  It seems with every query, my web results are filled with bad news.  But it’s like watching the evening news, I guess.  You don’t hear a lot about complete successes.  I’m going to keep thinking about this, but in the interim I’m going to order a set of those prosthetic nipples and see if they change my mind at all.  I read the blogs of a few other women that said those helped them with the decision.  Here’s hoping $50 solves it for me as well.

Finally, I’m thinking about maybe only posting photos every other day or less.  Nothing phenomenal is going on with my flaps or scars, and right now things are just focusing towards nipple reconstruction.  I’m not sure if I’ll do it that little though.  I’m such a visual person and was so desperate for other women’s recovery photos when I was waiting for my surgery.  Time will tell.  Until them, I am picking myself up by the boot straps and trying to enjoy this time of feeling good, healthy, and getting my strength back before my next procedure.  And wrestling with my two little girls as much as possible!

Giddy on up, ladies.

 

Daily dose:

04/25/12 - Frontal

04/25/12 - Flaps

04/25/12 - Abdomen

04/25/12 - Right

04/25/12 - Left

 

 

Day 41

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

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

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

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

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

 

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

Gah! (Day 40)

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

UPDATED:

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

Pool party

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

Nipple Reconstruction

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

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

 

 

DAILY DOSE:

04/23/12 - Frontal

04/23/12 - Flaps

04/23/12 - Abdomen

04/23/12 - Right

04/23/12 - Left

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

Bright, sunshiny day! (Day 38)

In case you hadn’t guessed by the title of this, today was a gloriously sunny and warm day; tomorrow is supposed to be the same (if they’re not lying to us)!  After having a day of less swelling on my left side noob, it’s back with a vengeance today.  I’ve been doing my physical therapy stretches and massages but I can’t tell if I’m seeing changes because I’ve started incorporating these things into my day or, again, if it’s just an amalgamation of things.  I’ve been carrying the girls, being active with them, and using my left arm more vigorously and often than I had been.  So, who knows at this point what it will do over the entirety of my recovery.

I’ve noticed the past couple of days how different each of my sides feel.  As of about last week, my right noob really doesn’t feel like a reconstructed breast.  Other than not having sensation on the skin where my natural breast (and nipple) used to be, it has pretty much fallen in with the rest of this body.  But, on the converse, I am acutely aware of my left noob all the time every day.  Laying down, standing up, walking, sitting, sleeping.  It is a source of constant discomfort and some worry.  When I lay down, I feel the weight of my left noob shift to either side.  When I stand up, I feel it fall.  When I’m asleep, it is bothersome because it causes me discomfort and wakes me.  I’m not sure how much of this is “normal” during recovery (to have one side more bothersome), how much is different and unexpected because of my recent increased activity (but I question that because the left side has been a pain since day 1), and how much of it is psychosomatic.

Speaking of psychosomatic, I noticed how much better I immediately felt after Drs. Louie and Liu told me that I was off of my weight bearing restrictions and could start to work my way back to my pre-surgery normal.  Even though, in the days leading up to that appointment, I had a lot of discomfort and questions about it – just them saying “you’re ok to do what you did before” alleviated some of those complaints.  I’m not sure if my excitement help me forget and everything just went back to normal after the adrenalin high went away, or if this is something else entirely different.  I just wanted to be honest about the waxing and waning improvement because I don’t want someone who is planning to have this surgery read my blog posts and think “Week 5 or 6 is the money spot!”.  I’m still having pain and discomfort on my left side but it is manageable without pain medication, and for a couple of days I didn’t take either Tylenol or Ibuprofen for it.  Today I took both (T & I).   I’ll keep commenting on my left side as long as I feel it is noticeable enough in my day(s) to discuss here.  Hopefully, that won’t be too much longer.  All that being said, I’m still happy with my surgical results thus far.

 

And now for the (almost) daily double…

 

04/21/12 - Frontal

04/21/12 - Flaps

04/21/12 - Abdomen

04/21/12 - Right side

04/21/12 - Left side

 

 

 

 

What I Am (Day 37)

Is happy!  Today was another day of getting back into it.  Cate and I took the girls to the Children’s Museum today due to inclement weather.  I was glad that I got a crack at this because Mike and my sister took the girls when I was still in the early stages of post-op recovery and I missed out (and we’re both a little competitive).  I was sad the day that Mike and Angie took the girls because I was missing out on something fun they were doing for the first time, and because I love my family and always want to be involved.  So I felt like this was a little bit of a redemption day, and it was a lot of fun.  We spent a couple of hours checking everything out.  The Children’s Museum here isn’t anything too fantastic, but it’s an easy way to burn off a few hours when the weather is rainy and all the other indoor kid venues are filled with buck wild middle school Spring-breakers.  It was pretty easy for me to manage the girls since almost everything is way down.  It’s much easier for me to reach down to the kids’ level than for me to help them reach up.  I had a few shots/kicks to the noobs today when trying to enforce sharing, taking turns, or “time to go!” with the girls – but nothing too scary. As much fun as it was to get my chance to do this with the girls, there is no way I would’ve been able to get through a trip there at 2 weeks post-op.  And I would’ve been sad to have to stop and keep taking breaks between exhibits because I was sore or tired or got hurt somehow.  So, it felt good.  I think it made the girls happy, and it certainly made me happy.

It is nice that I am not only feeling less fragile, but am no longer being treated like I’m made of glass.  I am and have been a fairly independent person.  This makes it super frustrating for me when I am treated like I am going to shatter.  I understand that my family and friends are beyond considerate, nurturing, and wanted only for me to be well cared for (and also careful).  But it is hard to keep telling and convincing yourself that you’re going to get through a life changing event quickly when everyone has on their kid gloves.

Our dad has called each one of us girls a “tough cookie” several times in our lives.  It’s like the highlight of one of his many two minute pep talks he’s sort of infamous for amongst us kids.  I am a tough cookie; I like being treated like a tough cookie.  I DID appreciate no one slapping me on the back, giving me bear hugs, or trying to arm wrestle me in the first few weeks post-op.  But I also appreciated the times when I was left to be and to try to do things on my own.  It takes a lot of work to get back to “normal”.  I’m still not there, but it’s in my sights.  But it also takes a lot of help to get there, too.  I couldn’t have gotten through any of this without the love and support of my friends and family.  Being able to pick up my girls, squeeze them, and fully enjoy our lives together after ~6 weeks feels amazing.  I just wanted to share that with anyone and everyone.  I’m into week 6 post-op, and I feel great.  I am happy with my surgical results thus far (despite the swollen left noob) and am so grateful that modern medicine has come so far.  I hope it keeps progressing at an exponential rate so that if either one of, or both, our daughters has this genetic mutation they have a wider selection of options.  If things are still the same then as they now, though, I can tell them all about this experience and that I survived all of this very well.  So today I am grateful, happy, and feeling good.

No update photos today because Mike and I are going to watch a movie together.  Between my surgery/recovery and his work schedule, it’s been months since we’ve been able to have a movie night.  So I’ll just let you know that my left noob is a little bit more swollen, but nothing too drastic.  My abdominal scar looks a little less puckered at the corners but still has a hint of that indentation near my belly button.  You’ll see tomorrow.  Until then sweet peas and tough cookies, take care!

 

 

Help Yourself (Day 36)

Good news is here!  My left noob is just a bit less swollen today!  I woke up this morning and was so excited to see that Dolly Parton hadn’t left part of her cargo on my chest! This made me think about when I first saw my reconstructed breasts in the hospital.  I was terrified.  Yes, they were lumpy and uneven and post-surgical raw; but those weren’t the things that troubled me.  I was worried that they were going to be as big as they were that day for the rest of my life.  I understand that a lot of women that undergo breast reconstruction are interested in other “perks” that may tag along with the procedure.  I was hoping for smaller and firmer.  I think that most women who have breast fed just hope to one day recapture their formerly firm breasts.  I wanted smaller because my natural breasts fluctuated a lot throughout my life.  But when I was pregnant and then nursing, they went from reasonable to unreasonable to totally unmanageable to pancakes.  So I wanted smaller and firmer.  When I woke up to the ginormo noobs, I was horrified they were going to stay that big.  When I woke up today, I was so excited that my rogue left noob was deciding to get back with the gang.  So, a step in the right direction!

Last night I did my PT stretches and massage before we went to bed.  I didn’t feel too great doing them because I always wonder if I’m doing things correctly, despite having an hour of instruction and coaching with Rachel, and the stretching produces a lot of discomfort.  But I figure that I will get more confident and  comfortable with time and practice. I am a little more sore today along my left side but that was expected; my left side has so much room for improvement!  But, I think, you can tell that the swelling on my left side (particularly in my underarm area) has decreased.  I don’t know that lymphatic massage has a 24-hour turn around time, but I’m just happy to see change for the better here.

I didn’t take my walk today.  Instead I went to watch and be semi-helpful to my husband during his last day of trial.  I hope to make up for it tomorrow, and also to have some super fun with the little ladies.

Until then, ch-ch-ch-check it out!  Sorry about the crazy light/glare.  I took these while the sun was setting and our bathroom windows are west-facing.  Ergo, weird light and shadows this time of day.

04/19/2012 - Frontal

04/19/2012 - Flaps

04/19/2012 - Abdomen

04/19/2012 - Right side

04/19/2012 - Left side

04/19/2012 - Left side swelling improved!