Becoming Whole Again

Months before my mastectomy, I made a very big decision.  Actually, I made a LOT of decisions once I finally decided to have my surgery.  I had to choose doctors, a surgery date, how long to leave work, where to recover, how to document my story, and how to savor the time I had left with my natural breasts.  I’m usually the last one to order at a restaurant – taking every menu item into careful and deliberate consideration – so you can imagine how painstaking it was to make so many big, life-changing decisions within a matter of months!  But there was one decision in particular that would make a very significant difference for me – my reconstruction.

This was a big one because it would affect how I’d look for, well, the rest of my life.  The stakes were pretty high, and I felt a lot of pressure to make the right decision – whatever that meant for me.

Nipples or Fipples?

First, before anything, I had to decide whether or not to keep my nipples.  This was a really tough one.  A couple of buddies my age decided to get rid of their nipples and reconstruct them later.  They were incredibly happy with their new breasts even before they had a chance to get new nipples!  They figured they might as well eliminate all of their cancer risk if they were going so far as to lie down on an operating table and sacrifice their breasts.  And fake nipples (or “fipples”) look amazingly realistic, so what the heck, why not!

That was also my mindset in the beginning.  If I was going this far, I might as well do it all!  I was adamantly convinced that I needed to lose everything to save my life.  Keeping my nipples was simply never an option.

Then I met some other young women who kept their nipples, and they were equally relieved and happy with their decision.  They explained to me that even though their risk was slightly higher, it was still around 1-3%, which sounds a whole lot better than 90%!  I mean, the lifetime risk for your average woman is approximately 13%, so you still come out with better odds than Jane Doe.

Great, what do I do now?!  Do I remove my nipples and the last teeny tiny remaining risk of cancer, or do I take the chance and keep them as a token of defiance against a disease that threatened to take everything away from me?  But, seriously, what’s the big deal anyway?  My nipples are only small little pieces of pigmented skin!  Why do they suddenly mean so much to me??

Out of no where, I felt myself getting really nostalgic about my nipples and missing them even though they hadn’t gone anywhere.  Every time I looked in the mirror they seemed to stare back at me with the same desperate, pleading look as someone stepping up to the guillotine.

That’s it, I really can’t take this anymore!  I was so stressed out that I wanted to grab a quarter and just throw it on the ground in frustration, not caring whether it landed on heads or tails.  After all, George Washington was a mighty good decision maker.  I’ll leave this one to him.

Then one day the decision was made for me!  On a warm, early summer morning in June, my mom and I ventured into the Big Apple to go to my first consultation with a breast surgeon.  Within minutes of our meeting, before I could say anything, she said she was putting me down for a nipple-sparring mastectomy.  But, wait, uh, well, I guess, okay alright!

This breast surgeon said that the residual cancer risk by keeping my nipples would be so minuscule that it was not really necessary in order to successfully previve breast cancer.  Anyway, she said, I was so young that I should just keep them and feel good about my body and my decision.  When she said this I was surprised by my relief!  I was also surprised and relieved that someone finally made a decision for me!

Then my breast surgeon at Georgetown, Dr. Shawna Willey, further confirmed everything for me.  She reminded me that the nipple-sparring mastectomy is still a relatively new thing and that’s why some doctors are a little hesitant to recommend it.  But Dr. Willey mentioned that the surgeons at Georgetown pioneered this technique, so they’ve been doing it a little longer than everyone else.  They’ve got this type of mastectomy down to a science, literally.

In fact, Dr. Willey even said that her team is working on the first ever long-term study on nipple-sparring mastectomies!  They’ve included nearly 200 patients who had this procedure at the hospital – most of these women had the mastectomy preventatively but a few patients kept their nipples after a cancer diagnosis.  Their first patient even had the preventative nipple-sparring mastectomy in the 1980s!  And, Dr. Willey said, none of these women have developed cancer occurrences or recurrences.

That’s when I was 110% sold.

Breast Reconstruction – One-Step or Two-Step?

Unfortunately, the decision making did not end here.  The next thing I had to decide before my surgery was how to actually reconstruct my breasts.  Though many, many more options exist, I basically had two choices on my plate:

First, there was the magical option of the one-step procedure.  This is when you go in for your mastectomy and wake up with all the reconstruction completely done – hopefully.  The surgeon doesn’t insert temporary expanding implants directly after your mastectomy while you’re still on the operating table.  Instead, he puts in the permanent implants, zips you up, and you’re good to go!

This sounds perfect, right??  It actually is pretty awesome!  But, alas, there are a few complications (and a few more decisions) involved.  Since the doctors need to make you flawless during that one surgery, the stakes are very high for everyone involved.  Your’e usually on the operating table longer, which can make you more prone to infection.  And sometimes it doesn’t come out as perfect as you would have liked.

My plastic surgeon often says that in order to make you look as good as possible he needs to work with a few drafts.  I liked this analogy since I write a lot.  I need more than one draft to produce the best piece of writing.  Sometimes you accidentally don’t catch a few glitches with the first draft – glitches that you’d want to revise later.  Well, he said, same goes for breast reconstruction.

You also have to know what size you want to be before your surgery.  There’s no room for trial and error, and I wasn’t really sure how big/small I wanted to end up.  You also need to know what kind of implant you want before you go under the knife, and (again) I wasn’t sure about this either.

That all being said, I have a few friends who went with the one step and could not be happier with the results!  It was perfect because they got what they wanted in one fell swoop and didn’t need to go in for multiple “expansion” appointments and then a later “exchange” surgery.  They’re busy mothers and busy businesswomen.  They didn’t have time for all the follow-up and needed it to be done at once.

Unlike a lot of women, I have a very understanding job and no children at home, so I could consider the second option – the two-step with expander implants.  This is where you go in for your mastectomy and, during the same surgery, the plastic surgeon inserts temporary expanding saline implants instead of permanent ones.  Then the doctor injects some saline in them during your surgery so you don’t wake up flat-chested.

Over the next few months, you visit the doctor a few times to get “expanded”.  This is when your surgeon injects a little more saline into your implants and you can literally watch your breasts grow!  Once you reach the size you like, you schedule a quick out-patient exchange surgery when the doctor swaps out the “expanders” (aka temporary implants) for your permanent silicone or saline set.

The whole two-step process can take as little as three months, but a lot of women need about four to six before they can have the exchange surgery and finish everything up.  It’s definitely a process, and the expanders are not always comfortable.  They can be bumpy, hard and totally motionless.  One woman commented on a previous blog joking that she calls her expanders “sponge bob square boobs”.

Nonetheless, I was tired of making so many decisions and wanted some more time to sort it all out after my mastectomy.  I just needed to get past that big surgery before I could focus on anything else.  And I really liked Dr. Spear’s draft description.  I wanted my new breasts to be absolutely perfect, and I know how many little typos and flaws I overlook in my rough drafts.

Rebuilding and Expanding my Breasts

When I woke up from surgery, I’ll never forget how wonderful I looked!  I know it sounds really funny, but my breasts were the same size (if not a touch bigger) than they were before my mastectomy.  They were suddenly very perky and round.  Even though I was a little bruised and unbelievably sore, I was totally digging this!

I also couldn’t believe that I was no smaller than I was before I lost my breasts.  Surgeons like to talk about breast size not in Victoria Secret lingo but in terms of volume, so I woke up with 275 cc’s of saline in each breast implant.  To give you some sense of what in the heck that means, I was probably a voluptuous “B” when I woke up in recovery.

My plastic surgeon, the witty and incredibly talented Dr. Scott Spear, does things a little differently than your average surgeon.  A lot of my girlfriends woke with about 180 cc’s in each expander (aka, in normal cup-size language, that comes out to a nice “A”).  Even with the one-step they can’t get you too big, because your peck muscles can only stretch so far at once – and it’s your pecks that are stretched out over the implants and hold them in place.

But Dr. Spear likes to pump you up as much as possible during your first surgery that way you don’t need to get “expanded” seven or eight times before your last and final “exchange” surgery.  Instead, he gets you to about the size you were before the mastectomy, so you wake up from surgery around the same size!  Then you come in to see Dr. Spear once maybe twice to get expanded.  He also doesn’t need to over-expand your breasts like other surgeons, who will leave you looking like Dolly Parton before you can swap out your exchange implants for the permanent set of nice B or C size boobs.  So if you’re shopping around for a good plastic surgeon, Dr. Spear’s the man!

Now, here comes the fun part, the actual expansion process!  I’ve been expanded twice now – the first time about two weeks after my surgery and the second (and last) time on Valentine’s Day, approximately four weeks after my mastectomy.

I was really nervous for my first appointment.  That’s actually a huge understatement – I was terrified.  Women told me that the process was pretty simple.  The doctor literally takes a big needle, pokes it in your boob and injects a small amount of saline before removing the needle and calling it a day.

Listen, I’ve never been a fan of needles!  Getting the flu shot every year is a big ordeal.  I have to spend the day mentally preparing myself for the trauma I’m about to endure.  In fact, the first time I ever drew blood was for my genetic test at 21 years old, and I thought I was going to stroke out when I saw what the nurse was about to do.  The thought of a needle that size going in my arm, let alone my fake boob, was more than I could bear.

To my surprise and great anguish, the needle used to draw blood for my genetic test was dwarfed by the epidural-like needle used for my expansion.  It was attached to a big syringe that looked like the one I use to inject my Thanksgiving turkey with lots of flavorful seasoning.  Instead, this one was going into my bosom!

Right before my worst nightmare was about to happen, my surgeon’s fellow, Dr. Rotman, swung a little yellow magnet over my chest like a ticking clock pendulum.  It immediately dropped and stuck firmly to the top of my breast.  How strange!  Turns out, there’s a metallic port on my implant where the saline can be injected.  I can actually feel the port – it’s super hard and feels about the size of a silver dollar.  Dr. Rotman then took a black sharpie and drew four lines directing towards where the magnet struck down on the launch pad.  It was as if he was drawing lines on the runway so the pilot knew where to touch down.

Then Dr. Spear walked in the room, armed and ready to go.  He saw me squirming on the table and laughed.  Relax, he said, stop being a baby, it’s really not that bad.  Then he handed me a small bag of saline that was attached to the syringe epidural needle.  This bag looked like an IV saline drip meant for the smallest of babies.  Since I was acting like one, I guess it was appropriate.

Then touch down.  I felt the prick of the needle and the slight tightening of my peck muscles as he pumped 50 cc’s of saline into my right breast.  Within five seconds it was all over!   And, better yet, when Dr. Spear poked the needle into my left breast, I didn’t even feel it!

The reason I even felt the poke of the first needle is because parts of my chest became hyper-sensitive after my mastectomy.  Dr. Willey snipped away all the nerves in my breasts while removing the boob tissue, taking away my sensation along with most of my cancer risk.  It’s a small price to pay if you ask me, but the site where she did all the snipping caused the skin above my breasts to feel very tender, as if I got a terrible sunburn.  It’s kinda funny to feel sunburned in the dead of winter, but eventually my poor, bewildered nerve endings calmed down and now my chest feels normal again.

But the area where he did the poke was right on the patch of tender skin on the top of my breast.  The pain was sharp but incredibly fast and short-lived.  Once the needle was in my implant, injecting saline, I felt nothing!   I’ve got to be honest, after all my nervous anticipation, this felt very anti-climactic.

My expansion appointments were always super quick.  I was in and out of the doctor’s office within 20 minutes, tops.  Once I left, it felt like I was wearing a skin-tight sports bra even though I wasn’t wearing a bra at all!  My expanders are already pretty motionless and hard, and after my expansion I felt like I had two large softballs strapped firmly to my chest.  Other than that, I felt just fine.  So off I went lugging my heavy Marry Poppins-like purse and bulky gym bag out of the doctor’s office like a pack mule.  On with the day!

Waiting for the New Girls

Well, expanders, it’s been real.  Even though these temporary new breasts of mine feel incredibly awkward, I find myself beaming when I look at my new body in the mirror.  I don’t know what I’m more proud of – my framed college degree hanging prominently in my bedroom or these new rock-solid boobs.  I definitely invested a lot of blood, sweat and tears into both of these accomplishments.  It’s a close call.

I think my proudest moment was when I went to the gym for the first time after my surgery.  It was almost four weeks out, and I decided to go for a light jog on the treadmill.  My boyfriend and I went in the evening after work, so there were lots of people jammed into this tiny gym.  I managed to find a free treadmill and jumped on.  Slowly, I cranked up the speed and started to move from a quick walk to a leisurely jog.

I’ve been running for years, so the rhythm felt very natural and soothing that first time back on the treadmill.  Though I sometimes dread lacing up my shoes and taking that the first step, I always feel much more invigorated and healthy after running.  What I wasn’t used to was running with two wide, motionless breasts that stick out just enough in every direction to interrupt my rhythm.  It took some adjusting, but now it feels just as natural as before.

My first 5K after my mastectomy with the amazing "Monday Runday" girls!!

As I trotted along, I kept looking around me at the sweating people focusing hard on their workout.  HELLO, do you see me???  Do you realize what I’m doing right now?!?  I just had a mastectomy and now I’m finally getting my old routine and my life back into place!!!  I worked so hard to keep the tears back.  With each step, I felt more and more victorious.

When I got back in the car, my boyfriend switched on the radio.  All of the sudden, I recognized the song, it was unmistakable.  “We are the Champions” by Queen played through the car stereo.  Again I felt the knot in the back of my throat and tried to fight the tears as I cranked up the radio and let the song sing out all of my overwhelming emotions.

I still can’t run as much as I used to before my surgery.  My chest gets really sore after three miles and then I have to throw in the towel and wait a couple of days before I try again.  But I feel so healthy and happy it doesn’t even matter!

Now I’m just waiting to get those permanent silicone implants!  Dr. Spear expanded me to approximately 375 cc’s in each breast, and he’s ordered a few implants that range from 450 cc’s to 600 cc’s.  He explained that the expander implant usually takes up some space in and of itself, so you have to account for that when you decide on your final size.  And he ordered a few sizes so he can experiment in the operating room and see which implant works best.  I guess it’s like trying on shoes, instead I’ll be trying on breasts while I’m under anesthesia.  Kinda strange but works for me!

There are a few different types of silicone implants you can choose from.  I decided to go with your standard round implants.  There are some other implants that look a little more natural and have a tear-drop shape.  Surgeons refer to these as gummi-bear implants.  But I decided that the round ones are the way to go for me.

My exchange surgery is scheduled for April 20th, and I couldn’t be more excited!  I know my silicone implants will feel and look much more natural.  They’ll have some give to them – how I long for giving breasts!  And once I have this surgery, it’s the last step in my reconstruction, so everything will be DONE.  The only thing I’ll need to do is visit my breast surgeon once a year for an annual check-up – no mammograms or MRIs necessary.

So, once again, the count down begins!  I now have 45 more days until this journey will finally be complete and I can close the chapter on this part of my life.  I’m almost there!

8 Responses to “Becoming Whole Again”

  1. March 17, 2011 at 4:01 am

    Claudia-

    I’m so happy for you! The ironic thing is the day you go for your expander surgery is two days after my initial surgery. I hope I go through the whole process as well as you have! You’re my hero! :)

  2. March 19, 2011 at 7:43 am

    Claudia-

    Thanks for your blog! I’ve loved reading this over the past few days. I am 24, about to be 25, and recently found out about my BRCA2+ status. Thanks for being so open with everything you’ve gone through. It really helps to know that other girls my age are making these tough decisions, as I am. I pray you are continuing to heal physically and your exchange surgery is as smooth as can be :)

    Heather, Seattle, WA

  3. March 24, 2011 at 8:17 pm

    Claudia,
    Do you have any idea how inspirational you are? Because of YOU I am finding the courage to have the surgery. I realize everyone’s situation is different and everyone heals differently too…and only I can make the decision to go forth with surgery. You are a very eloquent writer by the way. I look forward to seeing the documentary. I continue to wish you well and pray for you and your complete recovery! I’ll be checking back for more posts. Best of luck on the April 20th !!!
    Take care…

  4. March 25, 2011 at 2:46 am

    Claudia, thanks for your kind words before my surgery! I’m now a week out from surgery #2 and have my new DIEP reconstructed breasts (which are currently hard just like yours!)

    Yay for us being brave and doing what we can to avoid cancer. I’m still far from being back at the gym (forbidden until 8 weeks post-surgery) but I’m feeling good. :)

    Glad to hear everything is still going so well for you!

  5. April 1, 2011 at 2:12 pm

    You really are an inspiration! I am getting more and more courage everyday to start making plans.

  6. April 10, 2011 at 11:23 pm

    You really are an inspiration! I am 20 years old, and found out a few months ago that I am BRCA2+. I have done tons of research, and all of it has led me to the same conclusion! I want the risk to be gone! I dont care how young I am, there has never been an age that is appropriate to protect yourself. So why should there now? I am glad to have seen someone so young making the same decisions I would like to make soon. Thank you for sharing your story!

  7. April 15, 2011 at 4:37 pm

    my friend told me about ur blog – i’m BRCA positive – going to be 31 in May and Dr is pushing for me to remove my ovaries at 35 – i’m not married, no kids – thought i would always adopt but now i question that thinking i want my own – the double masectomy is coming – i think i’ll be waiting till the winter months for that .. i’m going to read ur blog now and catch up on it all!!!!

  8. July 12, 2011 at 4:50 pm

    Thank you so much for sharing!

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