New Boobs Tomorrow!

 It’s been over two months since my last blog post.  I've been meaning to update but I’ve continued to put it off.  When I self-evaluate and ask myself why, what I come up with is that I've been avoiding the emotional sadness that I've been experiencing.  For the most part, my life has gone back to normal.  I go to work every day, experience fun dinners with my husband, see my friends when I want; I've recently started going to the gym again.  Last week I found that I could finally lie on my side which is a huge accomplishment.  But every time I take off my shirt and look in the mirror, I see nothing that resembles me.  I miss the shape and contour of a woman’s natural breast.  I miss how soft and squishy they used to be (expanders look and feel like coconuts… literally).  I miss the way my nipples used to look and act.  I thought that keeping my nipples was my way of keeping a small part of me but what no one prepared me for is when you cut off the blood flow, they most likely will look much different.  I constantly question my chose to keep them.  Was the elevated risk worth it (only about a percentage or two)? There are a million things I miss about the way my body used to look but most of all; I miss the sensation of touch.  That is now completely gone and it’s not expected to come back. 

About a month post op, I told myself I was not going to judge until one year post surgery.  I wish I could hold myself to that but it’s difficult.  It’s not blaringly obvious that I have expanders in.  I’m guessing that only people who’ve had them before would know.  But I’m insecure that people will think I just have a bad boob job.  But the truth is, this is not an augmentation, I’m smack dab in the middle of reconstruction.  People who have seen many reconstructions before tell me they look great and I honestly agree with them.  I’m really just ready get to the next stage where I might feel a bit more comfortable with them. 

The good news is… I’m less than 24 hours away from my next surgery.  Aside from some minor adjustments I may have to do (all aesthetic), the hope is this will be my last.  I will finally get my real fakes!  From what I’ve heard, this surgery is much less invasive; I’ll only be under for 3 hours and most likely will go home at the end of the day.  The last few weeks, I have not been nervous at all; it wasn’t until an hour ago I started getting butterflies.  The strangest part for me is I don’t get to choose my size.  My plastic surgeon has ordered about 5 different implants and she’s going to choose which one looks best.  It’s strange to go to sleep and not know what you’re going to wake up with.  I guess no one gets to choose what they are born with either so it’s similar to that.  It’s just natural to think that when you get plastic surgery you get more of a say.  However, I’m still confident I chose the right surgeon so I’m going to trust she will make me look great.   

The REALLY great news… I still do not regret my decision to have the mastectomy.  And as long as I can still say that, things are going well.  Looking at the bigger picture, it’s not about what I look like in a swimsuit or cocktail dress (although it would be nice to look good!); it’s about me being alive the next 50+ years.  

Pump up the volume

Tomorrow it will be 4 weeks since I said goodbye to my boobs.  I’m happy to report I’ve been doing very well.  A huge milestone was getting my drains removed at the two week mark.  I finally felt free to move around and shower like a normal person.  I’ve had 2 pumps so far.  A pump is where they inject silicone into the expander through a port that will gradually stretch my chest muscle so that eventually there’s space for an implant.  My doctor thinks I’ll be fully expanded and ready for my next surgery in July.  Getting stretched out hurts but it’s not painful… or perhaps I have a different view of what pain feels like these days.  I never had braces but have been told it’s similar to getting your braces tightened.   So far I’ve gotten both pumps on a Friday which has been nice because I’ve had the weekend to relax.  Usually by Monday I’m feeling much better.  These humps on my chest feel nothing like breasts.  They are hard as a rock and because they are not fully blown up, every once in a while they shock me with a sharp pinch in various places.  Mostly they’re like a rock in my shoe that I can’t get rid of.  Just sort of annoying.  The silver lining… They sure are perky and unless my shirt is a bit transparent, I may never need to wear a bra again!  From what I’ve heard, the annoying bits will go away once I get my real implants but the silver lining will stay. Therefore the future is looking bright! 

How am I doing emotionally?  This is mostly up… sometimes down.  It’s very strange because rarely do I feel in the middle.  Mostly… I’m feeling “up” because it’s such an empowering feeling to know that I’ve taken my health into my own hands.  The fact that I’m 95% sure I will never get breast cancer feels phenomenal.  Since I learned my family had the BRCA mutation when I was 23, I had a *very strong* feeling I was going to be on the negatively positive side.  I’ve also been getting mammograms and MRI’s since I was 25 which means I’ve had 5 of each… actually 6 mammograms when you count the time I was called back for additional testing (that really sucked).    The fact that I’ll never have the anxiety of getting screened for breast cancer again is huge.  Because of this surgery, I have reduced my chances of getting BC to around 3%.  Every time I say that out loud, I get happy chills.  J  The “downs” are significantly less frequent.  When I get sad or frustrated it’s mainly because I’m uncomfortable most hours of the day and night.  When I think “uncomfortable” I immediately conclude… ”I can handle that”, and the majority of the time I can.  But sometimes it does get to me.  Like I said early, the expanders feel nothing like breasts.  I have also been having a difficult time sleeping which I’m sure plays into it as well.  I’m a side or tummy sleeper and since the surgery I’ve only been able to lie on my back.  I’m also not able to snuggle with my husband anymore unless we are playing footsy under the sheets.  Footsy was fun the first week, but now I want to snuggle into the nook. 

All in all, I feel lucky there are more ups then downs.  And when a down moment happens, I have to remind myself how fortunate I am that I’m not preparing for chemo or radiation.  The majority of women who get mastectomies start their cancer treatment a few weeks post-surgery.  I’m thankful for where research has gotten us today and am excited to see where it continues to go.  I’m sad every day for those in my family who’ve taken a fall to cancer however I owe those women my life.  Without them, I would have never known to get tested for BRCA.  I am proud to be the one who has stopped this trend of cancer in my family and hopping to start a new trend of preventative health management.  I’m still very glad I did this and would do it again.  



Just before getting my drains out.  

My best friend and bosom buddy out for her birthday last weekend.  After being diagnosed with breast cancer last year she went through a double mastectomy.  We had a proper showing/comparison in the bathroom of Blackbottle.  :-)  

Happy thoughts!

It’s been about a week and a half since I got my boobs removed and all I can think of is how lucky I am.  Lucky to be able to say Fu*k off to cancer the way my mother never could.  Lucky my recovery seems to be going smoothly and everyday is a step forward to getting back to normal.  But most of all, EXTREMELY lucky to be surrounded by love and support from my family and friends.  Today I got out of the house for a bit with two of my best girl friends to get pedicures (drains attached and all).  They presented me with a book filled with fun photos, letters and quotes from many of those who have stood by my side.  I’ve been tearfully reading through this book for the last hour and am overwhelmed with happy thoughts.  It’s encouraged me to look at the bigger picture and I’m really proud because I feel like I’ve done things the right way. 

1    I was able to research different doctors and procedures.  I was lucky enough to be able to choose a timeline that worked best for me.  Not many people who get mastectomy’s can do it on their own terms.

2     I’ve joined an amazing organization called the Innovators Network (a group within The Fred Hutchinson Cancer Research Center) that not only has given me a handful of good friends, but also enables me to feel really great about what I’m doing on a daily basis to raise money and awareness for cancer research. 

3    Had a boudoir photo shoot.  Ladies…. Everyone should do this!  Let’s capture these young sexy bodies while we can!  One year from now, I’m going to do another. The woman I used is a local photographer named Sarah Tro. She made me feel so comfortable and we had a lot of fun!

4    Rob (my husband) and I took a trip to St. John three weeks pre surgery.   This allowed me to connect with this wonderful man in my life in a way I’m not sure we had connected before.  If it was possible, I fell in love with him even more. This was easily the best trip we’ve had together… yet, we still have our honeymoon to look forward to.   I also want to note that I got to appreciate the way I looked (pre-surgery) in a bikini.  As women, more often than most we bitch and complain about the way we look with and without clothes on.  Anyone who knows me well knows I’m definitely guilty of this.  However, I can honestly say that on this trip, I appreciated the body God gave me. 

5    I asked for support from friends and family… and boy have they come through.  This was the most important one!  The last 3 years I’ve known of my diagnosis, for the most part I’ve kept to myself.  To go public not only helped create awareness, but also gave me the confirmation that the decision I was making was the right one.  My family and friends have given me the strength to actually go through with this surgery. 

6    I had a fun farewell party to the tata’s.  This included a specialty drink called TaTa Tini, a very inappropriate cake and a fundraiser.  Believe it or not, this idea actually came from my mother-in-law who I’ve come to love and think of as family.  She sent me an article a few months back written by a woman who was also BRCA1 positive and had made the same decision, to say goodbye to the boobs.  At the time I was having a rather rough go of all this emotionally.  Reading the article felt like I was reading inside my own head. Her husband threw her a farewell to the boobs party and I thought, what a great idea.  The best thing Rob and I did was hand the planning part over to a few of my close girl friends; because they took it to a new level.  The night of my Tata party will continue to be a night I look back on for years.  It was an event where close friends from all different stages of my life came together and gave me the strength and courage to take my health into my own hands.  It allowed me to follow through with the decision to remove a part of my body that I love.  It helped me to realize that the benefit far outweighed the risk of keeping my breasts.

7    Finally, I have raised $7300 for ovarian cancer research.  Wow! Thank you to all those who contributed. http://www.youcaring.com/fundraiser_details?fundraiser_id=839&url=justineaveryfightingbackbeforecancerstrikes

The last 11 days have definitely been a roller coaster but I can honestly say that so far, it has been easier then I expected.  The pain has been and continues to be bad at times but always bearable.  I have never once said to myself,  “I wish I would not have done this”.  There have definitely been emotional and frustrating moments but I can still see the light at the end of the tunnel and know it will get better. Pre-surgery I allowed myself to grieve, flaunt, capture, and had a proper goodbye. 

One of the letters in the book that was given to me today is from my friend who went through a double mastectomy about a year ago.  She gave me some incredible perspective.  She actually acknowledged that a few weeks ago was her new boobies first birthday “Happy Birthday New Boobs” she said.  I’m looking forward to next year when I think of this foreign object on my chest as part of me.  Right now, an ‘object’ is exactly what it feels like. 

My breasts and this whole process has been “A mountain like no other, a climb like no other”.  And hopefully will be… “a view like no other”.   – Kristen M.  I have always thought that scars are beautiful and tell a story of strength. 

Thank you to everyone who has touched me in so many ways over the last few months.  There are still so many people who have reached out that I have not gotten the chance to properly thank *yet*. This journey is not over yet, but because of my friends and family, I know I’ll have the strength emotionally and physically to continue the climb and cross the finish line.  Here’s to good health and a long happy life surrounded by loved ones. 

Tata cookie.  Logo designed by great friend Andrew Wicklund.

Fantastic tata cake!  

Party!  

Raffle!

One Week Post Surgery

It’s been exactly one week since my surgery.  I’m so glad I did it but to be honest, this last week has been one if the hardest weeks I’ve ever experienced both physically and emotionally.  Surprisingly the first two nights in the hospital, were not that bad.  From what I’ve been told, I woke up in great spirits giving my husband high 5’s and cracking jokes.  It was not all fun and games, getting up to go the bathroom felt like someone was jabbing a knife into my chest and I had to ask my husband to help me with things that were definitely not in our wedding agreement.  But, all in all, the first two nights were a lot better than I anticipated. 

The real difficulties came when I got home.  I was no longer hooked to a machine that pumped strong pain killers into my blood stream; they switched me out to Percocet.  This made me extremely nervous because last time I took Percocet it made me nauseous.  The thought of throwing up complimented with the pain I was experiencing was not something I could even think about.  I asked my doctor to give me something else but she said there was no other medicine strong enough for the surgery I just had.  So, for the last week I’ve been taking half the recommended dose

    

Another thing that’s difficult is losing the ability to be self-sufficient.  I couldn’t get the lid off of my pain meds, open the refrigerator door, lay down without someone supporting my back and taking weight off my chest and abbs, I couldn’t even brush my own hair.  This all really sucked.  But I knew/know it’s just temporary. 

Lastly is the emotional aspect of getting my breasts removed.  I honestly thought that because I had chosen to do immediate reconstruction that I would wake up with boobs, maybe smaller but at least something.  This was only sort of true.  Because I’ve decided to keep my own nipples, my plastic surgeon put in the expanders but did not pump them up because she didn’t want to cause too much stress before insuring the nipples would survive.  Apparently a small percentage of them don’t make it because of how much trauma they’ve been through.  So, I woke up to something, just not anything that really resembles a breast.  My doctors have told me that once they start expanding, it will get much better.  *Hopefully*, I should get my first pump next Friday.  The other thing that’s a bit frustrating is the total loss of feeling I have on my chest (which I’ve been told rarely comes back).  If I touch my breast, the only way I know I’m making contact is because it’s my own hand doing it.  If someone else were to touch my chest, I would have absolutely no idea.   My husband seems to think there might be some benefit for him later on.  :-)  And, they have been very itchy (probably from the narcotics).  Imagine getting an itch but having no way to actually satisfy it. 

On a positive note, today I’m finally feeling better.  Coming out of the surgery I had 4 drains hooked up to me; yesterday I had my first post op with my breast surgeon and she took out two.  This seems to be helping a lot with the pain.  I’m really hoping to get the other two out tomorrow.  Also, I have not had a Percocet since 1AM this morning and I’m feeling okay!  This is a huge accomplishment.  I have tried for the last two days to quit but could not push through the pain.  At the hospital they ask you every hour what your pain level is (gets really annoying actually).  The goal was to keep the pain at a level 3.  I would say right now I’m at a 4 but for the first time in a week I have a clear head.  I’ll take the extra pain to not have to take the meds anymore.

I’ve come a long way in the last week!  I’m walking up the stairs and able to open the refrigerator without any help.  Getting up from laying down still hurts, but I can do it myself.  I still can’t brush my hair or open a bottle without help but I know I’ll be able to do all these things soon.  

About an hour after waking up.  My sis and me.  

First day coming home.  My niece Siena and I.  She found a pink blanket and her pink doggy to match mine.  

I never thought I would be a blog person.   While I appreciate blogs, and certainly follow several, I have never really considered myself a great writer.  However, what I have to say this is not about making people laugh, sharing a good recipe or discussing whether or not skinny jeans are in or out (ALTHOUGH I strongly believe they are still IN).  It’s about documenting my feelings, thoughts, joys, reliefs and fears.  It’s about writing these things down because they may help someone else, now or in the future. 

Eight years ago, my family learned we have a genetic mutation in our gene line called BRCA1 (AKA The Breast Cancer Gene).  Many people have recently heard of this mutation because a few years back, after being diagnosed with breast cancer, Christina Applegate learned she too was BRCA positive.  Being BRCA positive means you have up to an 85% chance of developing breast cancer and a 40% chance of getting ovarian cancer.  Almost everyone (including the men) on my mother’s side of my family has been tested.  About 50% of us are free and clear.  This is great!  It means the gene stops with them; it can’t be passed to their children.  I finally decided to take the plunge three years ago and learned I’m one of the positive ones.  In this case, ‘positive’ actually means ‘negative’.  The stats you read above apply to me. 

So here’s the thing.  If diagnosed with the BRCA mutation, you can look at this situation two different ways.  You can take the “poor me” attitude… which I’ve definitely had moments… no hours… mmmm ok, actually weeks maybe months where I’ve felt sorry for myself.  And that’s okay because it’s really hard to learn what you’re genetically predisposed too.  But there are also moments that I feel blessed.  I have the rare opportunity to fight back… fight back before this even begins.  Because of the simple blood test I took three years ago, insurance companies have allowed me to start getting mammograms at the age of 28 and have paid for the majority of yearly MRI’s I have to get.  I have also been accepted into two different early detection ovarian cancer studies with the Marsha Rivkin Center and Fred Hutch and they pay for two blood tests a year and an ovarian ultrasound.  My mother, unbeknown to us at the time of her BC diagnosis, was also BRCA positive and didn’t have the opportunities I have today.  If she did, I truly believe she would still be around. 

Where’s this all going?  Well the fact of the matter is, while I’m really thankful for all the screening, I’m fed up.  I’m sick of all the constant boob checks, the mammograms, the MRI’s.  I’ve had to put a lot of time, effort and coordination into spending about four hours on Pill Hill (Swedish Hospital in Seattle) taking care of all of these visits once every six months.  So I’ve decided to pull out the big guns, the nuclear weapons.  I’ve decided to give this cancer thing the double finger (hopefully some of you get the Sex and the City reference).  On March 15^th I’m going to have a Bilateral Prophylactic (preventative) Mastectomy. * F%ck You Breast Cancer!*