Hereditary Breast and Ovarian Cancer (HBOC) Awareness

It’s that month again: Ovarian Cancer Awareness Month.  I have my toes painted teal and have handed out Teal Toes cards (www.tealtoes.org)!  I printed B.E.A.T. flyers from the National Ovarian Cancer Coalition (www.ovarian.org) and put them up at useful places at my work.  Ovarian Cancer Awareness Month is definitely less well known than October’s Breast Cancer Awareness Month, but is nonetheless extremely important.   

Last September, I wrote a post describing the differences between how my Mother and her sister were diagnosed with ovarian cancer.  Their stories are very different with regard to their symptoms, how their cancer was found, what stage their cancers’ were at diagnosis, etc.  My Mother was 49 when she lost her battle to this disease after fighting for 4 ½ years.  My Aunt was 52 when she lost her battle; less than 2 years following her diagnosis.  My Mother’s diagnosis came about 4 months after losing her sister to ovarian cancer.  I cannot even imagine how extremely scared she must have been.  Having a jerk doctor provide her original diagnosis and tell her she only had 6 months and all he could do was make her comfortable, didn’t help matters. 

The one thing that was not different between my Mother and Aunt was their family history.  They had lost their Mother from breast cancer when she was only 47 years old.  Their Mother had lost her own Mother from ovarian cancer at age 43.  Due to this family history and her own personal history (breast cancer at age 37, ovarian cancer at age 45) the doctors told my Mom that she probably had a genetic mutation.  She was diagnosed in 1994 and passed away in 1998, so all of the genetic testing information was still pretty new during that time.  The doctors also told her that most likely 2 of the 3 of us (her daughters) also had a mutation.  She did not want to get tested because she didn’t want to have her insurance drop her coverage – it was already so expensive for all of the cancer treatments, even with insurance!  She also didn’t want to cause a problem for us girls to get insurance coverage due to a genetic mutation.  Back then there weren’t the laws that are in effect now, such as the Genetic Information Nondiscrimination Act (GINA).

My oldest sister was tested in 2002 and because it made her feel more comfortable, paid for her genetic testing out of her own pocket.  My middle sister had her testing in 2005 and also paid for hers.  I had my genetic testing in 2008 when my husband and I knew we were done having kids.  My insurance covered my genetic testing.  I have been extremely fortunate with my experiences with insurance companies during my BRCA experiences.  Unfortunately, some women have to argue and fight for their genetic testing, screening procedures (MRI, mammograms, pelvic ultrasounds, etc.) and prevention procedures (prophylactic mastectomy, reconstruction, prophylactic oophorectomy, etc.).  I have not had to argue for my testing, screening procedures or prevention surgeries and our insurance has even changed a few times since my BRCA1 positive results.  I think most insurance companies realize that paying for screening or prevention procedures actually saves them money in the long run.  Although it costs money for the surgeries, those expenses are nothing compared to the monthly (and yearly!) costs of treating someone for cancer.  If I had not had a prophylactic mastectomy, but instead waited to get breast cancer, the insurance company would have then had to help pay for the surgeries anyway, but also chemotherapy, possibly radiation, endless blood draws, and the list goes on.    

The last week in September is National Hereditary Breast and Ovarian Cancer (HBOC) Week; and the last Wednesday of September is National Previvor Day.  Last year (2010) a Congressional Resolution was passed to make these two things possible.  This week lies right between Ovarian Cancer Awareness Month and Breast Cancer Awareness Month.  A previvor is a survivor of a predisposition to cancer (www.facingourrisk.org).  I am a previvor because I have a genetic predisposition to breast and ovarian cancer from my BRCA1 mutation.  If you want more information on previvors check out the FORCE (Facing Our Risk of Cancer Empowered) website above, which I have also blogged about previously.  For great information and resources about HBOC see the FORCE website and also Learn About HBOC.

There have been major advances in research and the medical community involving genetic mutations and preventative measures.  And the HBOC community has had extensive growth, with increased education, support and outreach.  I have been given the opportunity to prepare and have choices my Mother, Aunt, Grandmother and Great-Grandmother weren’t given.  I was given the chance to take a preemptive strike against cancer before it reared its ugly head in my body (well, at least in my breasts for the moment, my ovaries will come out soon).  I am so thankful to have the knowledge, options and support I do.  I am making choices, albeit difficult ones, in order to stop the pattern HBOC has had on my family for generations.  I will live past 50.  I will beat BRCA. 

So, Happy National Hereditary Breast and Ovarian Cancer Week and in a couple days, Happy National Previvor Day!     

Here’s a list a great resources:

http://www.ovarian.org/
http://www.ocrf.org/
http://www.ovariancancer.org/
http://www.cancer.org/
http://www.cancer.gov/cancertopics

Until next time, here’s to scientific advances, education, and awareness! :)

8/8/98

8/8/98 – A date that will forever be imprinted in my memory.  The day a piece of my heart was taken, never to be repaired.  Thirteen years ago today my Mom lost her long battle with ovarian cancer.  Some years the day comes around and passes more smoothly.  And some years, my emotions throw my normalcy out of whack.  This year it has been the latter.  I have been a bit more emotional this last week leading up to today and today, itself, was kind of difficult too.  I’m not sure why this year seems more difficult than last year.  Maybe it’s because last year on August 8, I was only about 3 days out from my exchange surgery and not completely with it?  Maybe it’s because I have finally completed all of my surgeries (well, breast related, anyway) including three surgeries this past year?  Whatever, the reasons, I don’t think it necessarily matters. 

I lost my Mom that day and my life has never been the same.  A piece of me died that day too and part of my heart was irreversibly broken.  Her death definitely changed me.  I used to be very naive, extremely optimistic and quite a bit more happy-go-lucky.  I’m sure some of those characteristics diminish naturally with age, but who’s to say?  I’ll never know how different I would be today, had 8/8/98 not progressed as it had.

I watched, with my family, as Mom took her last labored breath that morning.  It was the most surreal moment of my life.  I remember hiding out in my sister’s room when the morgue came to take her body away from our house for the last time.  I was only 18 and honestly didn’t want to watch my Mom’s body carried away.  I wasn’t sure if I could handle that memory.  Today, I still think that was the right choice for me.   

I remember friends and family visiting that day.  And I remember lots of tears and lots of laughter as wonderful stories were relived about Mom.  My uncle took us to get dinner that night and I remember looking around and thinking, “Don’t these people know my world is crumbling around me?  How can they be acting normal, like nothing’s happened, when my Mom died today?”  It’s very strange to see how life goes on, even if you’re not ready for it to.  My sister later told me she was thinking the same types of thoughts. 

I’ve made great strides in making peace with her death.  It’s just not something I had prepared myself for, nor do I think a Mother’s death is something one can prepare for.  I still think it’s shitty (please, excuse my language) that I have had to live without my Mom since I was 18.  I think it sucks that she didn’t get to see me (or my sisters) get married, watch my college graduations, or see any of her grandchildren.  I wish I could call her, get a hug from her, hear her laugh, see her smile, hold her hand, just one more time.

I hope she is looking down on me from her beautiful place in heaven with the biggest smile.  [At my high school graduation she told me she would be the easiest to spot because she would be the one in the stands with the biggest smile! :)]  I hope I am making her proud.  If I could be a tiny portion of the woman she was, I would be so grateful.  She treated others with respect and love.  She had a great sense of humor and cared for others so much; she was a Mom-away-from-home for many.

I miss her each and every day, but I am so fortunate to have been blessed with such an amazing example and role model.

Until next time, here’s to Mothers, role models and unconditional love. 

Overcoming Fears

Ideally, this post would have been posted before the “I finished!” a triathlon post, but you know…

As I explained in my “Triath…uhhh…what?” post, my sister, husband and I began training for a triathlon. We started training about mid-April and had a lot of firsts. First time I had ever run further than a mile, first time I had ever gone on a 5, 10, 15 and 20 mile bike ride, first time my booty had ever hurt so bad from riding a bike, first time I had ever ridden on a street bike, first time I had ever swam laps in the pool, first time I had ever worn one of those silly looking swim caps and goggles, first time I had ever swam “for real” in the ocean, and lots of others. My first time swimming in the ocean was also my first time to deal with a fear that I could not explain.

We got wetsuits, trekked our way to the beach and got started. Now mind you, we were not experienced enough to have the forethought to actually check a surf report prior to our trip over to the ocean. So, when we first arrived the three of us observed the waves, wide-eyed and glanced at each other. “Are we really going to do this?” we asked each other simultaneously. “Well, we really need to start practicing in open water…”

We got moving… Well, ok, it wasn’t a quick start. For those of you who don’t know, wetsuits are extremely difficult to get on! Especially for the first time! So, several minutes later when we finally yanked, stretched, tugged and squirmed our way into our wetsuits we made our way to the lifeguard stand. We decided we should inform the lifeguard that we were about to “try” swimming in the ocean and that it was our first time, so he could keep an eye on us. Or as my sister explained to her husband, “I figure I might as well introduce myself to the person who’s going to be giving me mouth-to-mouth soon, when he saves me from drowning!” We got to the lifeguard stand and informed the lifeguard, who had a very nice Australian accent, I might add. :) Oh, don’t worry, even my husband admits the lifeguard’s accent was nice! Anyway, Mr. Australia, told us the waves were pretty high (uh, duh! My husband looked that up after the fact and they were between 5 and 6 ft high at the time we went that day!), there was some type of pull from south to north, and some other ocean-talk details none of us understood. Then he said, but you are all pretty good swimmers, right? Uh – sure, we all thought, in a pool.

We eased our way in, and slowly started making our way out further away from the shore; all the while getting slammed over and over again by one big wave after another. I didn’t exactly have a specific technique because I didn’t really know what I was doing. My sister and my husband seemed to be thinking this was quite fun, while I kept getting slammed and receiving mouthfuls of salt water because I had to keep fussing with my goggles while trying to fight against the big waves. We moved out a bit past where the waves were breaking and then it was on our way back in that I started struggling. When we got to a point still somewhat far out where I could stand, I was really starting to wear out fast. Did I mention my husband and I had done a 20 mile bike ride earlier that day? Oh, yeah, so I was already a quite bit tired and the pull produced when the waves were coming was so strong that with each wave my feet would drag across the sand backwards out towards the ocean, not the shore. Then the big wave would come crashing into me, I’d stand up and the process would start all over again. I was making no headway and getting more exhausted and frustrated. My sister and husband were actually making it closer to shore, while I was just staying in the same place and I honestly could not move. I wasn’t sure how much more energy I could expend trying to get back to shore when I wasn’t able to make it any closer to shore minute after minute. I think due to a combination of being tired and feeling stuck, feelings of anxiety and panic began to overtake me.

There are many different types of fear and anxiety and I’m not sure exactly where mine stemmed from. It may have just been because my body was really tired from a 20 mile bike ride and from swimming (for the first time) out into a pretty rough ocean. It was also wearing me down because I felt like I was fighting and fighting to move forward, but just kept staying in pretty much the same place. My sweet husband could tell I was in a bit of distress and moved back to get me and helped pull me out from where I was stuck. I have never had something get to me quite like that experience did and both my husband and my sister said, “We love you, but you have to go back out there one more time today because we don’t want you to go home with negative thoughts or fear.” So, I let myself take a break and then we went back in, not very far, for a few minutes. All I could think was – there was no way I was going to be able to do a triathlon, if I couldn’t even go for the tiny little swim we just tried.

My husband looked up the surf report that evening and saw that the time we went was the worst the waves were going to be all week long. We pretty much picked the worst time to go for our first time out. The advantage and positive to that is that all other times seemed easy compared to the first time out there. I gained my confidence and lost my fear our second time trekking into the ocean. The waves we were competing against were only about 3 to 4 feet high and my sister had a great idea of slowly easing in and just diving under each wave over and over, until I felt more comfortable. For some reason that worked wonders and after that swim – I couldn’t even actually remember what had spooked me so much to begin with!

I apologize for this being such a long post – If you are still reading Thanks! I just wanted to share my experiences of fear and anxiety and demonstrate how sometimes you just need to push through obstacles, even if they produce unexplained anxiety or fear. Also, in addition to powering through by yourself, it’s unbelievable what you can do with the strength of loved ones backing you up.

I am so blessed to have my loving husband and family! Thanks so much to my husband and sister for helping me overcome a fear and not giving up on me or allowing me to give up on myself.

Until next time, here’s to overcoming fears, supportive loved ones and successfully swimming silicone! :)

I finished!!!

I finished!!!! I finished!!!! I finished!!!!

This morning was the triathlon and I crossed the finish line! After swimming in the ocean, biking and then running, I was so proud of myself! I have put my body through 3 surgeries (the mastectomy being pretty major) and tested my body’s limits in ways I never would have imagined myself doing. I honestly cannot believe that I just did what I did!

I am tired from not getting much sleep due to excitement and nervousness and getting up at 4-something this morning. And I feel pretty exhausted body-wise from, well, doing a triathlon! So, I truly appreciate the support you all have given me and I promise I will post again very soon updating how everything went today and I still will give the details I promised on my first open water swim experience too.

Until next time, here’s to accomplishing goals, seeing something through to the end (even if it’s tough) and silicone (which floats, bikes and runs!)! :)

Triath...uhhh...What?

One weekday about 3 months ago, my sister and I were talking on the phone about how we were trying to do better on our eating and exercising. She had run a half-marathon a couple years before and her husband was training for a marathon (they ROCK!) and she was talking about how training for a race helped her stick with her exercising. The next words out of her mouth were unexpected, “So…, I was thinking about doing a triathlon. My hope is that if I have to train for it I will definitely stick with it because I won’t want to not finish the triathlon.” My response? “That’s totally awesome!! You’ll have to make sure I know when and where because the boys and I will make signs and cheer you on!” The next words out of her mouth? “Ummm…wanna do it with me?” Wait – what’d she just say?! I must have heard her wrong! “Yeah, right! I couldn’t do that! I can’t even run!” Now, for those who don’t know me, I am (well, let me rephrase that – WAS) fairly athletic. I played softball and volleyball in high school, so exercise isn’t totally a foreign language to me. However, not only am I not anywhere near being 18 anymore, I also have never been a runner. I really don’t like running much and about 1 mile is the most I had ever been required to run.

“It’s not just running. It’s swimming and biking,” was her reply. Yeah, okay, that makes me want to do it more! NOT! I haven’t been the best at exercising since I had the boys, so…like 5ish plus years. Not to mention the exercise restrictions I’d had over the last year with all of the surgeries. Needless to say, I am not really in the best shape. But the more I thought about it and the more we talked about it, the more I thought maybe this would be a good idea. If I paid for the entry fee into the triathlon, I wouldn’t want to waste my money. And I am kinda competitive, so if I was doing a triathlon, I would definitely finish the race. Of course, this meant that in order to be able to finish the race, I would have to train (i.e. exercise) and follow a strict training schedule because failure is not an option. So, I told her maybe and I’d talk to my husband and see if he wanted to do it too. After talking later that same night, my husband and I decided we were in and we downloaded a beginner triathlon training schedule and started training the next day.

I have thought about writing a blog about this since we started mid-April, but to be honest, I was so worried about not being able to complete a triathlon or actually be able to keep up with the necessary training. However, now it has been 3 months and our first sprint Triathlon is next Sunday morning. You read that right – we trained, we signed up and now it is already here next week!

The great thing about this has been that we have stuck with it. It’s been difficult and extremely time consuming, especially with both my husband and I working full-time. Our boys have been so sweet and understanding – fortunately they really enjoy the gym childcare and on weekends we train with my sister while my dad watches the boys during those sessions. It has gone by really fast and the three of us still have a ton to learn, but the time has come.

I am so amazed with my body and how much it has been through this last year. Even after three major surgeries in less than a year, I was able to push it through rigorous daily training (usually 6 days a week). As I mentioned earlier, this isn’t training I have done before where it was just a matter of “bouncing” back. I honestly don’t think I have ever had to run more than a mile my whole life and the sprint triathlon is 3 miles. And preceding that 3 mile run is 9 miles of biking and preceding that is a ¼ mile swim in the ocean! It is amazing what you can do if you set your mind to it! I never would have thought I could train for a triathlon in my lifetime, let alone start 1 month following my revision surgery. I know I am not going to “win” this race, but for me just finishing the triathlon is going to be the best feeling. Of course, if I’m being honest, I’d really like to not finish last! I know I am not technically going to be “competing”, just competing against myself to push beyond my own limits.

I will follow-up soon with a post describing some of the training…specifically swimming in open water (i.e. ocean!). That was a challenge, and no, not because I was worried about sharks! More on that later.

Until next time, here’s to pushing yourself, trying something out of your comfort zone, and silicone, which is apparently pretty resilient! :)

The Quest for Over the Shoulder Boulder Holders

This is one of my shorter posts, but I wanted to share my experience!

In order to give my new gals the best support possible, about two weeks after my revision surgery I went to buy some new over-the-shoulder-boulder-holders. Previous to my mastectomy all of my bras had underwire. Following my mastectomy up until my revision surgery I had the hardest time finding bras. That was for a couple of reasons. Following these surgeries my plastic surgeon told me I can’t wear underwire for at least 6 months following my last surgery. Also, I was totally uneven and both sides were not the same size. Because of this, I was not able to just go grab any old cup size. A bra with cups would not fit correctly because one breast was high, one was low, one was longer, one was rounder. So I had bras that were triangle shaped, like Hanes, and because I still had a decent amount on top, they had to be XL “triangle” bras. They probably didn’t really offer the best support possible, but I didn’t exactly have a whole lot of options because sports bras didn’t exactly fit either.

Needless to say, I was extremely excited to be able to finally go shopping for new bras, since I actually had two breasts that were pretty much the same size and mostly even. However, I didn’t know what my actual bra size was anymore. I knew walking into the bra store the first thing I was going to need to do was get sized. So, I found a girl dressed in black with a pink tape measure and asked if I could get measured. She gave me my new measurements, which were not exact. You know, where they say you could either wear this cup with that band size, or this band size with that cup. I really started confusing the poor girl when I started asking some questions to clarify which size would be better for me. When I asked her a couple questions, she asked me what size bra I was wearing right then. I told her I wasn’t exactly wearing a “real” size, that it was just a “triangle” shaped bra. A bit bewildered, she then said, “Ok, so what size bra do you normally wear?” I knew that this was probably going to happen, but it was still a bit awkward to try to figure out the best way to explain to her why I had no idea what size my breasts were. And let’s just say that’s unusual for me – I haven’t so far had too hard of a time sharing my journey with others. So, I told her, as uncomplicated as I could, that my problem was I had had a double mastectomy with reconstruction and so I honestly had no clue what my size was. And that was also why it didn’t matter what size bra I used to wear because they were totally different now. She was pretty young and I think she either had no idea what I was trying to explain or was just really unsure of how to act after I shared that information with her. She pointed me in the direction of the couple types of wireless bras they carried and I told her I was good and thanked her for her help. Poor girl! Bet she didn’t think about having a customer like me when she started her job! Who would have thought it would be so complicated to buy a plain old bra? Anyway, overall, I was just happy to finally be able to wear a real bra with an actual size that fit both breasts! Just like so many other times along my BRCA journey, small wins make me feel very victorious! :)

I am 4 months post-revision surgery. Things are going great! In my previous post I mentioned that the lefty scar had already moved about a centimeter. I have not noticed any extra movement since then! I also have not noticed any movement from righty! It is such a relief, considering after the mastectomy and the exchange, I had falling, wandering implants pretty much right after each surgery was completed. Needless to say, I am extremely happy! It’s looking like I may actually be done with my surgeries for awhile! Yay!!

Until next time, here's to symmetry, comfortable bras and moving forward! :)

Life Moving Forward: A Year Later

Today (April 23, 2011) is my year anniversary from having my prophylactic double mastectomy with reconstruction. It is the day I took charge of my own future by removing healthy breast tissue before cancer could slither its sneaky, over-replicating cells into my mutated tissues. I do not regret my decision. Has it been the easiest year? No. Three surgeries in less than a year is a lot to put your body through, not to mention your emotional and psychological well-being. I have had my ups and downs this past year – as my blog clearly reflects. I had my worries prior to surgery. I wrote letters to my boys, just in case (that was not easy!). I had pain and fear directly following my surgeries, especially the mastectomy. I even had “boob envy” when I had the expanders in and they were so uneven I couldn’t even wear a regular old t-shirt! However, I also have had immense relief. I don’t worry anymore if today is the day I am going to find a lump or worry that I missing “IT” because I just don’t know how to perform a self-exam correctly. I have had little wins, like being able to brush my own hair again, or get a shower on my own. Or get stitches out and drains removed. I’ve had emotional wins (see One Sweet Day), when I didn’t tear up or feel sad when I heard the song “One Sweet Day” which was previously enveloped in heartbreaking emotions for me. I have tremendous gratitude to my husband, family and friends for the support and love they have given me selflessly and continuously.


And now, 1 year later, I am almost 7 weeks post revision surgery. “The girls” have better placement overall and look natural. But gravity is starting to claw at these implants too, as my plastic surgeon (PS) said would happen. The scar underneath lefty is already almost a centimeter from its starting position. That worries me, but I am trying to keep optimistic! I don’t have that constant tightness that comes along for the ride after each surgery to constantly remind me that I am not “normal.” My PS had given me the a-okay to start jogging, lifting, etc a bit ago – so the exercising has resumed. I am able to look back on this past year and smile. I made a choice, granted the choices I had to choose from were crappy, but that cannot be changed. I still feel today, like I chose the right path for me and my family. I am relieved to not have to worry about when I am going to get breast cancer. I never actually felt like it was an if I get cancer. I always felt like I was just waiting around to find it. (I do still have a small risk because some cells were left behind the nipples and probably a few sneaky cells here and there, but overall, compared to ~87%, it’s well worth the reduced risk!). I am not saying all is perfect and hunky-dory. I still have emotional ups and downs. But I don’t question my decision nor do I wish I hadn’t had the surgeries.


Last April, before my mastectomy surgery, I posted a poem I had written in a college poetry class. What if, was about what my Mother went through, but as if it was me having to go through it. When I took that class (now I am thankful it was an elective I was able to choose!) it was about 2 ½ years from my Mother’s death and I still hadn’t really worked through my grief. That class was extremely helpful to me to get my pain out in words, just as this blog has been. I wanted to share another one of those poems today. Fair warning – it’s not a happy, smiley poem. It makes me sad to think about how broken my heart was to be able to write such a dark, grief-stricken poem. I am still not 100%, because how can you ever go back to a full heart when you lose your Mother. But I am in a much better place now and have been given the opportunity to not have to go through what my Mother did or put my family through the heartbreak and loss that I have.

Battles

A gray haze covers me like a blanket,
padding my round shoulders
as if preparing me for an intense impact.
I am alone.
I am encased in solid blackness.

Each step my foot hammers to the ground
is as loud as a whisper;
a whisper like the soft whimpering of my heart.
The struggle is hilly like the mouth of a crimping iron.
Following every battle my mother wins, there is another

gnawing at the shins of the one just defeated.
The chemotherapies weakening every ounce of her strength
as the cancer devours the length of her body.
At times the heavy haze will release me,
even as the cancer still hides amongst her healthy cells.

But the grayness always comes back
to seize me and pull me to my deepest sadness.
I keep pushing myself because there must
be a brighter side,
a side brighter than this cold twisting tunnel of

emptiness I slide slowly through.

And yet…
A flash of hope!
I run toward this light of hope,
my feet suddenly clouds of dust.
The closer I get, the dimmer the light,

and then it is gone…
gone like a mirage of water
in the desert summer,
the relief has vanished.

“The cancer has spread to your lungs,” the doctor tells us
as the room begins spinning, everything blurry around me.
“I am afraid there is nothing else we can do.”
These horrible words crash down on me

like a hammer to a nail.
But I am stubborn and optimistic.
Words in my ears ringing over and over,
“She may not live much longer.”

The machine assists her breathing now,
her lungs are filling each second with
killer cancerous cells.
“I love you, Mom,” I softly whisper in her ear as she lies in bed.
She squeezes my hand in return,

too weak to speak those three powerful words
that I am longing to hear one last time.
I lay next to her watching her chest for movement,
the split second for it to expand upwards lasts a lifetime.
Relief floods me, as I sigh deeply thankful for another second with
my Mother, my role model, my best friend.

“It’s okay to let go now, you have fought so hard, so long.”
These powerful words flow full of fear and love to my mother’s ear.
“We know you don’t want to leave us, but you don’t have to suffer any more.”
Surprised at myself for saying something I had been denying, my throat
swells up, lip quivering, entire body trembling.

Knees bounce to the cold black concrete,
tears wildly race down my cheeks,
down my face,

and pounce fiercely at the ground.
Reality smacks me in the face
as I see her chest move with the breath of life
one last time,
one last breath.

I am engulfed in silence.

I kiss her cheek as the warmth of her body
escapes, like steam from a volcano.
I crawl, dragging myself across the sharp blades of
reality.


I feel truly blessed to have been given a choice, an opportunity that my Mom wasn’t offered. Obviously, her struggles, fights, and death have had an everlasting scar on my heart. It is something that molded who I am today and maybe it is what gave me the courage and strength to say, “YES! I choose to fight! I will not let this BRCA mutation destroy another generation of my family.” Life is moving forward with new hope and optimism.


Until next time, here is to my Mother’s strength, informed decisions, and hope. :)

Positive Update

So, I just posted my few weeks following my revision surgery because I didn’t get it posted before we left on vacation. Now at almost 6 weeks post-op, I wanted to give an update of how things have been since then.

First, I am pretty sure I have almost all of my energy back! I haven’t been feeling anywhere near as tired as those first couple weeks. I wish I could honestly say no more naps, however, …oops! For the first time in over a year, my body’s defenses let down and I got whatever bug is going around. First, I woke up barely being able to talk, which lasted for almost a week. Then that turned into a lovely sinus infection (while we were on vacation!) and a cough. Antibiotics quickly helped with the sinus infection, but I still have a cough. Needless to say, over our vacation I took a few naps just because of how crummy I was feeling. Who knows?! I could have been tired due to my surgery and whatever buggy I caught! Either way, I am now feeling pretty good!

I have been lifting more and more. I held off on heavy lifting for as long as I could because I really wanted the internal stitches encompassing the pocket to heal and remain put this time around. I don’t know what caused the pockets to disappear following the exchange surgery, but I was not taking any chances. So, until I had to load up the suitcases into the car for our vacation (hubby was on business!), I hadn’t been doing too much strenuous lifting. Now I’m pretty much back to the norm – carrying several grocery bags at one time, lugging the folded laundry upstairs, picking up one of the boys to place them in a cart, etc.

In between the exchange and revision surgeries, I had explained briefly how having the implants under the chest wall muscle deformed the implants with certain movements (see post). As, I stated previously, I know that was probably something only I was aware of, but it still really bothered me. I have noticed following this surgery that there is much less deformity during those same movements. Maybe it was due to the fact that the implants had fallen out of their pockets before the revision surgery and there was the ability for movement of the implant and deformity of the surrounding skin? No matter what the reason, I am very happy to not be seeing that so much now! Well, at least to a much lesser extent.

Last week I had another post-op appointment. It went really well! I still have a small area (where it popped open before, see post) underneath the right breast that is not completely healed. It is still about the size of the tip of a pencil eraser, so not too bad. Also, on the left side underneath there is a small area that still hasn’t finished healing either. My plastic surgeon (PS) said that it was probably an abscess where a suture was. She figured it would take at least several more weeks or a month or more for everything to finally be fully healed. It’s weird how if you get a cut or something fairly superficial, your body normally closes up the wound and heals pretty quickly. Actually, the majority of my incisions healed up very quickly. However, there are a few times now after being cut open 3 separate times in one year my body has just taken its sweet time finishing the job. Very soon I should be healed with no open “wounds” and hopefully done with surgeries (at least until it’s the ovaries’ turns).

So far, the placement of the implants is great and I am pretty sure they still look natural. Thank you to my PS, who has done an outstanding job keeping them looking as natural as is possible in these circumstances! As a reminder to those who are new to my blog, last April, my breast surgeon removed all of my breast tissue from my collar bone down to underneath each breast. Then my PS placed expanders, followed by implants, underneath the chest wall muscle. So needless to say, there really isn’t much for her to work with. If the implants do not stay in their new “homes” I will have foobs that go down to my waist, like before my revision surgery. (Okay, that is a little bit of an exaggeration, but you get my point!) And if my PS had made the pockets too tight, my foobs would be very round and not look natural. She has done a great job though. I am fairly certain they look pretty normal to the casual observer. Although this could just be wishful thinking or the fact that this is my new “normal” and I am actually starting to get used to it! My PS did say there will probably still be some dropping due to gravity, but I am going to try to wear very supportive bras and still wear a light one at night to help them stay as close to where they are as possible!

At the end of the appointment my PS decided to take pictures. (I can’t remember if I’ve mentioned this before, but right before the mastectomy and in between the other two surgeries, they took pictures from different angles so they would have the progression of the results.) I was pretty happy about that just because that meant she felt we were at the end. At least complete enough for a (somewhat) final picture. Additionally, she made my day when she said she didn’t want to see me again for 3 MONTHS!! Yes, I said months! That is the longest I’ve gone without seeing her for about a year and a half, maybe longer due to all of the preparation, decisions and appointments prior to the mastectomy! I was thrilled! Even the girl making my next appointment commented, “Wow! Three months!” My PS said 3 months, then after that 6 months and then only once a year! But of course if I have any issues I can see her earlier. It may seem weird to be so excited about that, but it makes me feel like the whole process is coming to a close. And that feels WONDERFUL!! :)

Until next time, here’s to the return of energy, accepting a new norm and silicone where it should be! :)

Post-Revision Surgery Update

Sorry for the delayed posting! I had this post mostly typed up and then I got caught up getting the family prepared for a 1 ½ week vacation and left on vacation! Below is information regarding the first couple of weeks following my revision surgery.

Here's an overview of the week of my surgery (Tuesday, March 8). I only took Vicodin for the first couple days following surgery and even then I only took 2 or 3 a day. On Thursday morning (2 days after my surgery) I had taken a Vicodin, but still had a pretty bad headache. I remembered I had ibuprofen from one of the earlier surgeries, so I took that and not only did my headache go away, but it actually seemed to help with the tightness and soreness better than the Vicodin. Go figure! My stupid body can’t handle strong drugs, like, morphine or dilaudid, and the Vicodin never really gets rid of my pain. I think it just takes a bit of the edge off the pain and makes me feel a little fuzzy headed. So, from Thursday afternoon on I stopped taking the Vicodin and started taking Ibuprofen. Additionally, the anti-nausea patch (transdermal-scopolamine) made my head fuzzy too; especially my eyes. When I tried to read something, a clock, a book, something on the t.v., my eyes just could not focus and everything was pretty fuzzy. I was supposed to leave the patch on for 72 hours, so I removed it Friday morning. It took awhile for the effect to wear off, but eventually it was much better. So, by taking that off and stopping the Vicodin I was starting to feel much less foggy.
Saturday I got worn out just by sitting at the park watching the boys play with their cousins. Pathetic, huh? Sunday I was still trying to get past the anesthesia fog and tiredness. Just sitting through church service wore me out! I still took a nap and I was still very tight, sore and had minimal pain. My sweet husband did so much on Sunday to make as little work for me to have to do when he went back to work on Monday. He said he wanted to get as much done as he could because he wouldn’t be here to help and he knew it would be tiring for me to just get back to some of the normal things like driving, dropping and picking up the boys, making everyone’s meals, regular cleaning up after the boys, helping with homework (plus working on a science fair project), etc. Plus, my nephews were in town staying with my dad and we had them spend the night Monday, so they could play with the boys. So even though I had 4 boys at the house ages 9, 7, 6 and 4, I did pretty well on Monday. My dad was sweet and took the boys for a little during the afternoon so I could take a nap and rest a bit.

By Tuesday (1 week after my surgery), things really turned. I woke up pretty tired on Tuesday morning, but after making the boys muffins for breakfast (pretty big feat actually! It’s harder to grab things from the cabinets, pour and stir then you think!), having a cup of coffee and taking a nice hot shower, I was actually feeling really good! I was quite a bit more mobile and I was feeling happy with the placement of everything following surgery. After my exchange surgery in August, right away I remember not being happy with placement. The implants already seemed a bit low, not to mention being smaller than my natural breasts. Needless to say, it was a bit frustrating. On Tuesday, however, I was relieved that this surgery seemed to fix the problems. They will still be smaller than my natural breasts, but I think now that they are placed where they’re supposed to be they look very similar to how my natural breasts did with a bra. The scars aren’t bad. As expected, there is still a scar underneath each breast. However, she also made a small vertical incision from each nipple down to the original incision. This was to get rid of extra skin due to all of the stretching when the pockets disappeared after the last surgery. Also, in order to tighten things up inside to make sure the pockets stay secure this time around, there are a couple folds and puckers of my skin to the sides of my breasts. My surgeon felt a little bad because of those, but I told her they didn’t bother me. I would much rather have a few folds and imperfections and have everything stay where it is this time. I would prefer to not have another surgery. I had my appointment that day with my plastic surgeon (PS) and she said everything was healing well, so she removed my external sutures! That was nice because they are kind of itchy and a bit uncomfortable.

Wednesday my hubby had to leave town again. Just for three days, so not too bad. My right side underneath was bothering me a bit and I noticed my PS had left a suture. It was directly in the middle on the underneath incision right where the vertical incision meets. I didn’t remember her saying she was going to leave one, so I figured it was accidentally. That area was a bit more achy during the day and in the afternoon I noticed right above that suture on the vertical incision the skin had pulled apart and was gaping slightly open. Because it is on the underneath area of my breast I could only see it with a smaller mirror and it was really difficult to tell how much it was open and if it was bad or not. It oozed a little blood color at first and then a light red-pink. I decided to call it safe and called my PS’s office, but it was already almost 5. They made me an appointment for the next morning. I had placed a butterfly band-aid over that part to be safe and make myself feel like something was holding it together. If I’m being honest I worried myself a little. The actual opening wasn’t a very large portion, but it was right on the part of my breast where there is the most pressure and weight from the implant. So, I started to worry about it splitting open more and causing problems. However, Thursday morning it already looked much better. I’m pretty sure the nurse who saw me probably thought I was being paranoid, but I just couldn’t tell how bad it was by myself!

Thursday to Thursday (March 17-24), was getting back into the swing of things. I was feeling a lot better, but still got tired and worn out fairly easily. I had sharp twinges and pain when I tried to move in certain directions, but there was not a constant tightness as there was initially after the surgery. It was strange to forget my “constraints” and reach my arm in a specific way and feel sudden, sharp pain. These were mostly from the right side where the more prominent fold is. I believe the pain was from where the internal stitches are and I just had to work with it and stretch it out over time. I was still being careful on heavy lifting because I really didn’t want to ruin anything. I didn’t want to assume I could lift or push/pull something and then affect the pockets or sutures, so I was playing it safe. Better safe than sorry, right?

Well, that’s a quick update for the couple of weeks following my revision surgery. I will post again very soon with a more recent update. Thanks for hanging in there for this long detailed post! :)

Until next time, here’s to naps, regaining energy and progressive healing. :)

Disappearing Pockets

I had my revision surgery Tuesday afternoon and things went well. Total time for all of it, plus waking up in recovery was about 4 ½ hours. I am in some pain and very sore, as expected. The Vicodin, for me, doesn’t actually get rid of the pain, but lessens it enough to be manageable. As a reminder, I had this revision surgery because both implants had fallen, so much so they seemed like they were not in the pockets that are supposed to hold them in place. After this surgery, my plastic surgeon (PS) told my husband that once she got inside she couldn’t even find where the original stitches had been. So, the implants really didn’t have the support they needed. This time she put in permanent stitches, instead of dissolvable stitches. She also added allo-graft (not sure exactly which kind, cause I was not all there!) to assist in making the pockets as sturdy as possible. I’m sure the majority of my pain right now is from the tight internal stitches, and let’s face it, being cut open. That’s never pain-free. Just think about how a stupid paper cut hurts and they are usually superficial tiny cuts!

Right away I notice a difference in placement of the implants. In August, after my exchange surgery, I already felt like the implants were falling and sitting pretty low. This time they are much higher up and not saggy at all. I know they will drop and settle a bit, but I think that would be a good thing as long as it’s not too far. I still really want them to look as natural as possible and so far my PS has done a great job at helping them look normal and I really appreciate that.

On a positive note - I had NO NAUSEA again! The scopolamine patch does wonders! The anesthesiologist also had me take Emend and put some other anti-nausea medication in my IV. It is really such a relief to wake up and not feel horrendous, like after my mastectomy surgery. I am so appreciative to the women on Facebook BRCA Sisterhood for their support and telling me about the scopolamine patch! I am sooooo thankful! Another positive note – NO DRAINS!! As I said in my previous post, my PS thought I would probably have drains in this time, so I had prepared myself to have those pesky things hanging from my body. However, when I woke up in the recovery room and asked about drains…viola!...no drains this time! It is just one less annoyance, two less scars and no worrying about accidentally pulling them out.

As of right now, I’m sitting in a relaxing recliner chair and only in minimal pain and discomfort. I still feel fuzzy and tired, probably from the anesthesia. My sweet, sweet husband is taking care of me and everything else, while working from home! He’s done everything from taking the boys to school, helping me with a shower and brushing my hair, making me a yummy lunch and breakfast, refilling my ice bags and even gives me “the LOOK” when I try to get up and get myself a glass of water. I am so blessed to have the most amazing, loving and thoughtful husband. He is wonderful!

Until next time, here’s to a quick recovery, no more surgeries and silicone that stays where it should! :)

Let the Nerves Begin ...

So, this weekend it all of a sudden hit me smack in the face. Bam! Oh boy! I’m having surgery in less than a week! It started on Saturday and continued getting worse on Sunday, which consequently, just happened to be my birthday. So, in addition to realizing I was another year older (which never used to make a difference one way or another), my head started messing with me. Don’t get me wrong. I have had the surgery at the fore front of my mind for a while. Knowing it was coming up I’ve started to get things in order around the house as I will not be able to lift, scrub, vacuum, etc. for a bit again. Coupled with “nesting”-like behavior, I’ve started to freak myself out with the “what ifs?”. Now, I know that it makes no sense, and there is no correlation, but I’ve started to worry that I had been feeling so confident that this surgery would be just as “easy” as the exchange surgery in August or even “easier”. (I put “easy” in quotes because let’s be honest, it’s not really easy, but in comparison to the mastectomy surgery it is a WHOLE LOT easier. The mastectomy surgery is in a league of its own.)

My point being, I started to worry that maybe I had been jinxing myself by thinking this surgery wouldn’t be so bad. What if I used all of my good luck for not having any major complications on my first two surgeries? I have been very blessed so far. What if I’m not remembering things as well as I think and maybe things were more difficult after the exchange surgery than my brain is allowing me to remember? On Sunday night, my head started playing tricks on me and my stomach started doing flips and somersaults, like it was in a circus. The reality that I was putting my body through another surgery in five days was presenting itself full force. No matter how calm and in control I had convinced myself that I was, I am still human. Any surgery, no matter how big or small has risks and can make one nervous. I especially don’t like having to rely on others so much post-surgery, and feeling like I’m putting other people out. I will have another lifting restriction of 5-10 lbs (about a gallon of milk) for 7-14 days. There will probably be drains put in again (for at least a few days) and I will have to rely on my husband or dad to drive the boys to and from school, among other things. It’s just hard to not be able to do the normal things I do daily for my family, let alone simple things for myself.

I had my pre-op appointment Monday and they had to reschedule the surgery due to a more pressing surgery my doctor needs to coordinate along with three other surgeons. So instead of my surgery being on March 4, it is now scheduled for Tuesday, March 8. Just one more thing…now my waiting time doubled from 4 days to 8 days! As if I wasn’t already worrying and ready to get it over with, now I have to wait twice as long! I know in the grand scheme of things it’s really not much time, but it still threw a wrench in my emotional preparation and plans. My poor husband already had Friday scheduled off and had a business trip in the works for next week. Now he has to rework his entire schedule and can’t go on the trip. Not that he’s complaining about it (he hates having to travel all of the time anyway!), but I still feel badly. I also had to reschedule with my dad to watch the boys during surgery. I’m sure it’s really not as bad as I’m feeling it is right now, but I hate inconveniencing people, especially when they are already doing so much for me. Plus, let’s face it – I’m a bit emotional right now. My husband has of course been amazing about the whole thing and my dad said whenever we need him, he’s there.

I am sure all of the frustration with the moved surgery just comes from already starting to freak out a bit. I had a lot of questions for my plastic surgeon and she answered all of them. I first asked her what she was going to do to try to keep the implants from falling so much this time around. She said she would be moving them back up and more towards the middle (they have been migrating under the arms a bit like with the expanders, but not quite as drastically). She would use more Alloderm, or perhaps try Strattice, where ever it looked like it was needed and would assist in reinforcing the pocket. She is also going to stitch up the sides internally, as before, to help the pockets heal and maintain their structure. I asked about what we do if the implants fall this much again after this 3rd surgery. That full answer was much less comforting, although she first said she had a lot of confidence that we would be able to make them much better this go around. One of her solutions is to drop to a smaller size of implant. Honestly, I don’t like that answer at all because I am already smaller than my natural size was. But what she explained made perfect sense. She said it was the weight of the implants that was adding to the stretching and dropping. However, she confirmed that due to my height, she was afraid if we went smaller I would feel very flat chested. I really hope that isn’t a road we have to go down. I asked a lot of other usual before-surgery questions and she took the time, as always, to answer them all until I was comfortable.

So, for now I am feeling more confident that I haven’t jinxed the surgery, and as my sister told me, I have to think positively. (Boy, how the tables have turned! That always used to be my line to her!) This post may sound a bit negative, but I was trying to honestly vent my feelings that crept up on me the last couple of days. They really kind of hit me like a ton of bricks! I am still nervous and still feel like there is too much to do prior, even though I was given 4 extra days, but also just want to get it over with and be done with these surgeries. It would be nice to be a part of the “All Done Club” as some ladies call it.

Until next time, here’s to structurally sound implant pockets, calmer nerves and positive thinking! :)

Back Under the Knife

So, it’s been a bit since my last post. I guess that was for several reasons. First, from the end of October to mid December we had visiting guests for almost 5 of those 8 weeks, the boys were off the whole week of Thanksgiving and 2 weeks for Christmas and we traveled for the holidays. In addition, after enveloping myself with BRCA-this, surgery-that, recovery-this, fake boob-that, I honestly just needed a little reprieve to focus on family and friends. It was really nice to not focus too much on surgeries and recoveries and just deal with normal life for a bit. Of course, that is not to say that my BRCA situation left my thoughts - just that I tried to put them on the back burner for bit.

Here’s a quick reminder of where I’m currently at in the entire prophylactic surgery process. Last April 23rd I had my skin-sparing, nipple-sparing bilateral prophylactic mastectomy with 2-step reconstruction. In the initial surgery, they removed all of my “normal” tissue and placed expanders underneath my chest wall muscle. I did not need the usual fills of the expanders because my plastic surgeon placed all 800cc under my muscle right off the bat (and, by the way, I’m pretty sure that’s not normal!). August 5, 2010 I had my exchange surgery, where they replaced the expander with an implant (silicone in my case). Best case scenario the exchange surgery would be the final surgery, but that is not going to be the case for me, nor is it the case for many women enduring these surgeries.

If I’m being totally honest and upfront, I wasn’t too pleased following my exchange. Only a week or so after, I already felt like the left side was still too low and definitely lower than the right side. Also, as I said in my previous post in August, the implants seemed smaller than my real breasts, but they are the largest silicone implant size. I suppose they could be larger if I wanted saline, but I picked the silicone because I liked the fact that they seemed to feel more “real.” So overall, I wasn’t exactly happy with the new rack (sorry to disappoint you Kir!). I think I also find it frustrating because people in general just assume they must be great because they are fake, but this isn’t like getting a boob job. This is under the muscle and with no other tissue there at all. My plastic surgeon noticed right away how the left side had already started sliding and we decided to wait it out to see how much it was going to fall and what the right side was going to do. Currently, they have both fallen quite a bit, lefty more than righty, but nowhere near the unevenness I had prior to the exchange surgery and they are a bit more durable, so a bra mostly fixes it.

Needless to say, I am going back into surgery; this time a revision surgery on March 4. My plastic surgeon is going to use more alloderm and extra stitches to try to create a stronger pocket that hopefully won’t give as much as has happened with the last two surgeries. I kind of feel like I’m being picky, but there is an empty sunken area above my left breast, especially if I raise my arm, because of how far the implant has fallen. They are both a bit too far over, underneath my arms again too. I feel very lucky that my plastic surgeon has done a wonderful job to make them look natural, so I hope she can fix them and still keep the natural look. Even with no shirt on, besides the scars underneath each breast I’m not sure how noticeable it is. My foobs don’t look fake.


There is another part that no one tells you about and for some reason you don’t think about it prior to surgery, probably because you have no idea really what to expect. But, because the implants are under the chest wall muscle, certain movements squish and deform the breast. For example, push-up like movements, like laying on the floor on your stomach and then getting up from that position, or bending, reaching down for something or raising your arm. It’s actually really strange, and I guess I’m already more used to it, but it’s kind of annoying and frustrating. I know I’m probably being pretty picky with this because in reality no one can probably notice this but me, but I’ve tried to be honest through this journey and share things that may be helpful to other women.

Wow, I feel like I sound like I’m complaining and being whiney… I really apologize for that because in reality I do understand how very fortunate and blessed I have been with regard to my surgeries. I have had very minimal complications/problems and I know women who have practically been through hell and back. This is not an easy process, and even though we all hope ours will be as easy as possible, I think we all know it can only go so smoothly. I mean look at what we are putting our bodies through – physically, emotionally, psychologically. It is a permanent change – it cannot be undone, no take-backs. This was and wasn’t an easy choice as I’ve described previously. With up to an 87% lifetime risk of developing breast cancer it felt like I was just waiting to get cancer, not wondering if I was going to get it. But it is not an easy choice to remove a healthy part of your body. Especially parts that, let’s face it, make you feel like a woman. Do I regret my decision to have the prophylactic surgery? No, not one bit actually – despite the tone of this post. I have had an immense amount of relief since my first surgery. I used to worry during self breast exams that I must be missing “IT” and the cancer was there I just wasn’t checking my breasts correctly or didn’t know what cancer should feel like. I’d worry during and after my screening tests (MRI’s, mammograms, and ultrasounds) that the technicians or radiologists might not take something small seriously enough because of my age. I’d think to myself, “But do they truly understand my risk? Something they think is insignificant in a normal 30 year old (or younger) may actually be very important to pay attention to in me.” I know that sounds a little paranoid, but I watched my Mom go through breast and ovarian cancers at young ages and to be honest, I think cancer is somewhat ingrained in my head as a death sentence. So, overall even though at the moment things aren’t perfect [and the natural ones were,… NOT! :)], I would still make the same choice all over again. I feel a bit guilty like I’m being a little picky, but my family has been amazing at helping me feel better about that. First, my Mother-in-law has said “If you have to go through all of this, you might as well be happy with the results.” And I thought, “You’re right! It sucks to go through all of this, so I should at least be able to feel satisfied with the results!” So true! And then my sister-in-law compared it to having a baby – She said to think about it as if you had a baby and the labor and delivery were smooth and easy, but your friend had are really difficult, painful delivery. You wouldn’t feel guilty that yours was easy just because your friend’s was hard; you would feel blessed that yours went so well. And that clicked in my head. So, I am going to stop feeling guilty for having few complications throughout my surgeries and be more thankful for my countless blessings.

If you are still reading this – THANK YOU! Thank you for hanging in there with me through my whirlwind of emotions and thoughts. I just had a lot to share and catch everyone up on since it’s been so long since my last post. I truly appreciate all of the support!

Until next time, here’s to venting, blessings and uneven silicone…oops I meant silicone! :)

The Sisterhoods Among Us

Just to put it out there first off – I am absolutely blessed to have the rockstar husband that I do! He is a tremendous support and we are pretty much one being. I honestly don’t know what my life would be without him. Also, my Dad, Father-in-law, and brother-in-laws have all always been so wonderful and supportive of me too, however, they are not female! And this post is dedicated to the AMAZING women in my life!

There is something about having strong women in your life that truly makes a difference. A HUGE difference! Sometimes you feel a certain way or need someone to understand, commiserate, empathize or sympathize with you and for some reason only a woman can be that person. I have had excellent examples of strong women throughout my life. My Mother was strong, brave, loving, sweet and funny (to list just a few). She taught me so many wonderful things and had an impact on many lives. At her work at the university she was always referred to as the “Mom away from home.” Something she wrote to me in a letter when I was away doing an apprenticeship before my senior year in high school is something I reflect on often. She had said if she could, she would take away all of the bad things that happen to me and make everything good all the time. She then said that “without the bad times the good times wouldn’t seem so good”. That is so true! If things were always wonderful, what would you have to compare them with to know that they are indeed wonderful? I feel cheated to have lost out on so many years with my Mom, but blessed to have had her for 18 years.

I am extremely fortunate to have been blessed with such an amazing Mother-in-law, who has been through a lot with me: my Mother’s death, my wedding, my college graduations, the birth of my babies, and my recent decisions and surgeries regarding my BRCA1 status. She has been a rock for me and has always treated me like one of her daughters. She came and stayed with us for two weeks following my initial mastectomy surgery. She took wonderful care of the boys, cooked, cleaned, did laundry, made beds, shopped and of course took excellent care of me! I am so lucky to have her.

I have also been blessed in life with 2 sisters and 4 sister-in-laws (whom I’ve known since I was 14!). My sisters (all of them above!) are an incredibly important part of my life. Something my Mother always told us girls was to be nice to one another because one day we were all each other might have. These wonderful ladies have lent ears, given advice and been solid supports through all of this. As a collective unit they came to the hospital every day, made me a surgery basket (that included everything but the kitchen sick!), picked up food and goodies for my husband, brought dinners, sent flowers and goody baskets, called, sent supporting, loving texts, cards and messages, and even dry-washed and brushed my hair when I was still in the hospital and not able to shower yet! My sisters are so sweet and kind – I love them so!
I also have several close female friends who are truly wonderful women who have been so sweet and supportive to me for, well, as long as I’ve known them! One of my dear friends told me she couldn’t figure out how to send yummy hot lasagna, so chocolate and coffee would have to do! Oh darn! I guess if I have to suffer, I’ll force myself to eat chocolate and drink coffee *sigh*! :)

I am so thankful to my family, including many fantastic aunties, and friends – they mean the world to me.

During my search for support and information regarding my choices and decisions for being BRCA1 positive, I found many support groups. FORCE (Facing Our Risk of Cancer Empowered), I already blogged about here. Another one is BRCA Sisterhood on Facebook. It was started by Teri Smieja and Karen Malkin-Lazarovitz. BRCA Sisterhood is a place where you can post anything you need to ask, share or vent about: questions regarding surgeries, screening, doctor appointments, concerns, fears, triumphs, etc. I have found the ladies on this site to be so sincere, helpful and understanding. They are there to lend an ear, ease your worries, tame your fears, or just give you a virtual hug when that’s all that can be said at times. One of the kind ladies on the Sisterhood mentioned the nausea patch to me after my horrendous experience after my initial surgery. Having that tidbit of information allowed me to ask my doctor and get a major reprieve from nausea after my second surgery! What I’m trying to say is it’s extremely helpful to have a support base that truly understands what you are going through and what you are feeling. My family means the world to me, but it has also been a blessing to have found BRCA Sisterhood and have another group of women that want to help, listen and love.

Below is the definition of sisterhood:
Main Entry: sis•ter•hood
Function: noun
Date: 14th century
1 a : the state of being a sister b : sisterly relationship
2 : a community or society of sisters; especially : a society of women in a religious order
3 : the solidarity of women based on shared conditions, experiences, or concerns
(http://www.merriam-webster.com/dictionary/sisterhood)

I especially love #3 “the solidarity of women based on shared conditions, experiences, or concerns.” Doesn’t that seem to include all of us? Even our mothers and friends are part of a sisterhood with us because of a solidarity we all share, even if it’s just being a woman. That is the remarkable thing about women – we bond with each other. Even if it’s not someone we know all that well – we are willing to help, listen, and share. We want to help others out and don’t like to see someone suffer or feel alone. We are there for each other because that’s what we do. I am so happy to be a part of numerous sisterhoods in which I have created everlasting bonds with wonderful women who have taught me how to be a better woman.
From the bottom of my heart, THANK YOU! All of you tremendous women in my life who have shown me love, compassion, kindness, strength, bravery and courage. I am forever in your debt.

Until next time, here’s to WOMEN, STRENGTH and SISTERHOODS!

September is Ovarian Cancer Awareness Month

September is Ovarian Cancer Awareness Month. Those of you who know me, have read my “About me section” or have been following my blog know that I lost my Mother to ovarian cancer when I was 18. She was only 49. We also lost my aunt to ovarian cancer when she was 52 and my great grandmother to ovarian cancer when she was 43. My Mother’s and aunt’s stories about their ovarian cancer diagnoses are very different. My aunt had been having severe stomach pain (especially after she ate), shooting pain down her legs and horrible periods for a while and went to see her doctor. He told her he thought the pain was caused from her high stress levels and to go home and do stress exercises. She eventually got a second opinion and they could actually feel the tumor before even running any tests. She was diagnosed at, age 50, with Stage IIIb ovarian cancer that was already on the liver. On the other side of the spectrum, my Mom found hers early. She was having very bad side pains that eventually made my Dad talk her into going to the ER. They thought it was her appendix and as they were in surgery, they found that one of her ovaries had gangrene (years before she had had her tubes tied). They took that ovary out, but left the other one in and when they performed pathology determined she had Stage II ovarian cancer. I was only 14 at the time and my Dad had been with her the entire time in the hospital and left to pick me and my sister up from school to bring us to see my Mom. During those 20-30 minutes (seriously, the hospital is just down the road from the schools), a doctor came into my Mom’s room and told her she had ovarian cancer and there was nothing he could do for her but make her comfortable for the next six months. My poor Mom! It had only been about 4 months since she lost her sister to the same disease and now she finds out she has it too. Luckily, my parents decided that doctor was a jerk and got a second opinion. I believe that is probably why she lived long enough to see me graduate from high school (about 4.5 years longer). I suppose she may have only had 6 months to live had she just assumed that doctor knew exactly what he was doing and had listened to him.

I wanted to share the details with you because ovarian cancer is known as the silent killer. Ovarian cancer survival rates are much lower than many other cancers that affect women. The symptoms that seem to be most associated with it can often be mistaken for other health issues, which in turn can contribute to a later stage diagnosis. To spread awareness of 4 main symptoms of ovarian cancer, several organizations, including the Ovarian Cancer National Alliance, the National Ovarian Cancer Coalition (NOCC), the Ovarian Cancer Research Fund (OCRF) and the Gynecologic Cancer Foundation (GCF) have combined forces to spread the word, BEAT. BEAT stands for Bloating that is persistent, Eating less and feeling fuller, Abdominal pain, and Trouble with your bladder. Additional symptoms commonly reported include fatigue, indigestion, back pain, pain with intercourse, constipation and menstrual irregularities; however it is important to note that these occur at an equal rate in the normal population of women without ovarian cancer (http://www.ovariancancer.org/). A woman in the normal population has a lifetime risk of about 1.4% and women with a BRCA1 or BRCA2 mutation have a lifetime risk ranging from 10-60% of developing ovarian cancer. The 5- and 10-year relative survival rates for ovarian cancer patients are 46% and 39%, respectively (http://www.ovariancancer.org/). The survival rates, of course, vary depending on the diagnosis stage. Although mortality rates for many cancers have decreased over the last 30 years, ovarian cancer mortality rates have remained unchanged. The Ovarian Cancer National Alliance has a wealth of information and statistics and also flyers to spread the word on BEAT (http://www.ovariancancer.org/).

The main message of this post is to please be aware of your body and trust that you know your body better than anyone else. Trust your instincts and be your own health advocate. Maybe spreading a little knowledge on known symptoms will one day help a woman get to her doctor a bit quicker than she normally would have. Please pay attention to your body, know your family history and stay persistent. Awareness and knowledge are power!

Oh and go teal this month! It’s the ovarian cancer awareness color. Check out Teal Toes!

Until next time, know and spread the word of BEAT, pay attention to your body, and stay healthy! :)

Exchange Surgery Aftermath

Today is 1 week and 1 day after my exchange surgery, which was on Thursday August 5th. It is amazing the difference between this surgery and the mastectomy surgery with reconstruction. I cannot believe it is only a week post surgery. This time I was able to raise my arms enough to get a shower on my own on Friday evening (the day after surgery!). Last time it was about a week before I could even sort of lift my arms enough to wash my own hair and even then I was bending my head down and it was difficult. This time I have not needed anything to help me sleep at night, I only took pain killers a couple times during the first couple of days. The pain is nothing compared to last time though. With the mastectomy surgery, as I’ve mentioned before, I had a lot of pain the first couple days. Not just from the sutures or stretching of my chest muscle from the expanders filled with 800cc, but I think the majority of pain those early days is from the removal of all of the breast tissue, probably from all of the nerves being cut. However, this time around there was no removal of any tissue; just incisions through the original incisions on the underside of each breast. The expanders were removed from the developed pockets made by stretching my chest muscle and also using alloderm. (Alloderm is a tissue matrix that is made from donated human skin and is stripped of all characteristics except the important structural components. It was used to help create a pocket for the implant. You can get more information on Alloderm here.) Anyway, my plastic surgeon (PS) removed the expander, replaced it with a silicone implant and she also did a little work to help move the “gals” a bit more toward the center instead of under my arms as they were between these two surgeries as I described previously. So, this time my sides are very tight from the internal stitches which are trying to maintain the pockets/implants where they should be. But really overall, I have not had very much pain overall and definitely no intense pain like last time. It has been a much easier surgery and recovery compared to the mastectomy.

Also, triumphantly, I had NO nausea this time around! Hooray! Some lovely ladies on BRCA Sisterhood on Facebook mentioned a nausea patch to me after I explained my terrible nausea following the mastectomy. I asked my PS and she ordered it during my preop appointment and I picked it up at the pharmacy. The patch was called a scopolamine transdermal patch that I placed behind my ear the morning of the surgery and wore for 72 hours. It was so wonderful to wake up and not feel like absolute crap! Supposedly my PS came and talked to me afterwards and I don’t remember that at all, even though my husband says I was talking, smiling and thanking people. :)

I am very thankful to my plastic surgeon and the anesthesiologist for their hard work. My PS did a wonderful job making my “foobs” look like natural breasts. I’m pretty sure if you didn’t know any better you would think they were natural and that’s not just with clothes on! However, if I’m being totally honest I am still trying to get used to them. I feel like they are smaller than my real breasts were and my PS must have felt so as well, because she said she would have liked to have put 1000cc implants in, however, silicone only goes up to 800cc. Oh well. I also sort of feel like they need to be over toward the middle a little bit more…you know how with natural breasts there is space between them, but then when you put them in a bra they push together a bit? Well, they probably look natural because of the space which is great, but they don’t really move...at least right now since I still have stitches and pain I haven’t exactly tried hard, but in any case I almost worry they look too far apart. Whatever. I’m sure it’s too soon to actually tell anything. I need to wait and see how they settle and what they look like in several months, so I guess I’m being too critical and picky, but that’s just kinda how I feel at the moment. Hope that’s not TMI, but just thought I’d share what I’m really feeling for those who may go through all of this at some point – trying to keep it as honest as I can!

Until next time, here’s to a quicker recovery, being healthy, and (tada!) silicone!! :)

Back on the Table

So, here it comes, the second big day. My exchange surgery is scheduled for Thursday August 5. To remind those of you unfamiliar with the process, this is the surgery where the plastic surgeon removes the expanders that are underneath my chest muscle and replaces them with the implants (silicone in my case). Some of the lovely ladies with BRCA Sisterhood on Facebook call it Operation Squishy Boobs. I love that! The expanders are very firm and are unmovable. They are not too tight or majorly uncomfortable right now for me because instead of sequential fills to slowly expand the expanders, my plastic surgeon added all 800cc right off the bat during the original surgery. So, I am fairly used to the extent to which my muscle is stretched. However, the silicone implants should feel more soft and pliable, hopefully a bit more natural. In addition, as I mentioned in my previous post right now my breasts are very uneven and under my underarms instead of towards the center of my chest as they should be. This is something else that the surgeon will take care of during the exchange surgery.

This surgery is going to be much less traumatic than the prophylactic double mastectomy with reconstruction surgery in April. For example, the surgery is going to be performed at the clinic closer to my house, as opposed to the larger clinic/hospital the initial surgery was done at. Also, the first surgery was about 6 hours long and this one is supposed to only be a couple of hours and then it is outpatient where I go home right after. I am sure I will still feel pretty beaten up, sore and tired, but nothing like how I felt after they took out all of my breast tissue from the bottom of my breasts to my collar bone. I will have lifting restrictions for 1-2 weeks, depending on how I am recovering. My plastic surgeon also told me it is a 50-50 chance of having drains, so I am keeping my fingers crossed that I get the 50% chance of NO drains! But I will deal with them of course if that’s what needs to happen. The drains, which I explained more here, are not the worst things ever, just a bit of a nuisance.

It is strange how fast this surgery snuck up on me. In some ways it felt like it was taking a long time to get here, but looking back the last 3+ months went by very fast! I was originally hoping to have the exchange surgery at the end of July, but then ended up having to wait for one part of the right side to finish healing. To explain, when I woke up from my original surgery I had a blue tattoo-looking area (if you put the tips of your thumb and forefinger together it was about the size of the space in between, just larger than a quarter). This was from the dye used to determine which sentinel lymph nodes to remove and it didn’t happen on my left side and I don’t think it is very common. My body did not take kindly to that dye and it stayed for weeks and then the top layer of skin finally started to peel, but then it turned into a thick scab. After a bit, the plastic surgeon removed the scab explaining that at a point it is doing more damage than good because water can get trapped underneath and bacteria start to grow. So, once she removed that scab I had a crater on my boob that was kinda gross and took forever to heal completely. Once it did heal about 2.5-3 weeks ago, my plastic surgeon felt comfortable with scheduling my exchange surgery. She wanted to give my skin a few weeks to be healed and give the scar a chance to shrink, etc. before she performed another surgery. Sorry if that was TMI, but I wanted to give an explanation for others who may find themselves in the same situation at some point.

So overall I am in good spirits. I am nervous, but less so than for the mastectomy. This time I already have a nausea patch that I asked my doctor to order since I had such a rough time with the anesthesia and medications last time…sensitive stomach! I am hoping I may actually be able to wake up from the anesthesia and feel well enough to even think about looking down at my chest as I have read about others doing! It is a relief to know that I am *hopefully* almost done with this portion of the prophylactic surgeries. If all goes well and I don’t need any revisions, I will be done with the breast portion and the ovaries will be next…when I’m 35.

I am very appreciative to all of my family and friends for all of their wonderful support throughout this BRCA experience. I have had such sensitive, kind responses to my decisions and I am so thankful for everyone. I am especially very grateful to my husband who has been truly amazing during, well, the entire time I’ve known him, which goes back to high school and being there for me during my Mom’s death. He is more than words can describe and I love him more deeply with each passing day!

Until next time, here’s to no more rocks on my chest, squishy boobs, and silicone!!! J

Boobs, Boobs, The Magical...Fruit?

Awww Boobs! Everywhere I go I see boobs! Thanks to the wonderfully warm (hot!) summertime weather, everyone is wearing tank tops, sleeveless shirts, summer dresses, bathing suits and any and all cleavage-baring clothes available. Now, I wasn’t one who flaunted her bosom prior to surgery, but boy how jealous I am right now that I can’t even wear a t-shirt, let alone a tank top! My “lovely” (NOT!) interim boobs, as I’ve called them before, are not even. So much so, that I cannot even where a regular old t-shirt because it is so noticeable. Lefty was the “normal” well-behaved side right after surgery. Minimal bruising, decent placement…and now is making a run for the border, like it’s migrating season for the birds! Not to mention it’s trying to make a hard turn left, so the “headlight” could say hi to you if you were sitting on my left side! Then there’s rightie! Oh, rightie…well, first rightie was pretty much directly under my chin where it felt like I could have rested my chin on it. Then, there was the blue dye (from the sentinel node biopsy) about the size of a large quarter, in more of an oval shape, that tattooed my skin just to the right of the nipple. This “tattoo” decided to start peeling, then scabbed, then the plastic surgeon removed the scab which created a crater, which has since been taking it’s suh-weet time healing. Just today, the last little pin hole finally filled in (Yay!), it only took it… ummmm about 3 months! So now, rightie is pretty much healed and besides being a bit too far under my armpit still, is in a somewhat decent position on my chest. However, the two put together under a t-shirt look ridiculous!

Needless to say, I’m jealous! I’m jealous of small boobs, big boobs, perky boobs, saggy boobs, bouncy boobs. Pretty much, any boobs, but mine! As one of my friends has mentioned – I have boob brain! I am wearing clothes to camouflage my unevenness. A shirt under a button-up shirt, shirts with something distracting to the eye, shirts that have coverage “frill” around the cleavage area, etc, etc. I would love to just wear a regular t-shirt or tank top! And I know, I know. This is only temporary and my plastic surgeon will fix everything and make it all look “normal” during my exchange surgery. My husband is so sweet and keeps reminding me that it’s only temporary. Yeah, yeah. :) That doesn’t help me right now when I go to my closet and try to find one of the 4 shirts that actually help conceal my dysfunctional chest!

I know I do not have to live with my step-like chest for too much longer. It is just frustrating at times. It’s not like my natural breasts were perfect. They were fairly saggy after breast-feeding two babies and were actually a tiny bit uneven themselves. However, they could be placed in a bra and viola! They looked pretty great in a shirt – if I do say so myself. Of course, that could just be elaborate fake memories I am giving myself to feel better? These imposters under my chest muscle do not budge. I am not allowed to wear an underwire bra, but pretty certain it wouldn’t do the trick anyway. A sports bra can tug lefty up a tiny bit, but not enough to get away with wearing a t-shirt. I even feel very self-conscious in, ahem, intimate moments with my husband.

On the other hand, being perfectly honest, things are actually moving along nicely. With rightie finally healed, my plastic surgeon said we could start the ball rolling on scheduling the exchange surgery. She wants a few weeks to keep an eye on the new scar, see how it shrinks, etc. The temporary boobs finally have an end in sight! *Sigh of relief!* My husband helps me remember how wonderful my plastic surgeon is and how I need to trust that she will do her job and make everything look great. I know, I am trying! That really is supposed to be her job, right? She has done a lot of breast reconstructions, following mastectomies. She doesn’t seem in the least bit concerned about my unevenness now and says she will fix all of that during the exchange. So, okay - I need to trust in her and be patient. I need to suck it up and deal with what I’ve got. It definitely could be a ton worse and I am so very lucky at how well things have gone so far, considering. I’ll just have to admire others seemingly perfect racks and believe that I will be back to looking “normal” soon, with a shirt on anyway.

Until next time, here’s to boobs, boobs and more boobs…oops I mean silicone! :)

A Chance to Give Back!

There have been several organizations that have been irreplaceable during my BRCA journey, including the BRCA Sisterhood (on Facebook), the Young Breast Cancer Survivor Group at my hospital and the FORCE (Facing Our Risk of Cancer Empowered) organization (http://www.facingourrisk.org/). FORCE is an organization that has been very helpful to me and my family during our BRCA journey. The FORCE community gives people a place to share and get support and information on hereditary breast and ovarian cancer. It is a community where others understand what you or your loved ones are going through. I have found it extremely helpful to learn more about what other women have been through and found it useful in preparing myself prior to my surgery. The message boards are a safe place to ask questions, talk about your fears and concerns and talk to women who have been through similar experiences. My city even has a FORCE support group that I have attended. They also have a yearly conference that involves experts in hereditary cancers, physicians, surgeons, and information on understanding your risks, surveillance, surgery, healthy living, support groups and so much more. It is a wonderful support base.

Okay, so this is really unlike me to ask others for something...but I have found the FORCE organization to be very helpful during my quest for answers and support during my BRCA journey. If they were to place high enough in the Chase Community Giving Campaign it would be very beneficial to many people. The FORCE website was one of the first places I went when I found out about my BRCA1+ status because my sister had already been going there for a few years. If you have a free minute, your vote would count and could help numerous people. Below is some information explaining the Chase Community Giving Campaign, more information about FORCE and how you could vote to help a wonderful organization. Voting really is quick and easy! Thank you so much for your support!

What is Chase Community Giving?

In a nutshell, Chase has a campaign on Facebook and is going to be giving away a total of $5 million dollars to be split between 200 charities. The charity with the most votes will receive $250K, 4 runner-ups will receive $100K, and 195 charities will receive $20K.

What is FORCE?

FORCE is the only national nonprofit organization dedicated to serving the needs of and improving the lives of individuals and families affected by hereditary breast and ovarian cancer (such as BRCA mutants like me!). They provide lifesaving information on the latest medical treatment and risk management, resources, and awareness.

Voting on Facebook starts June 15, 2010 and 200 winning charities will be announced on July 13, 2010.

What would FORCE do with the money if they won?

For starters:
$1,000 delivers the latest in BRCA research and information to 500 families.
$500 gives 60,000 visitors access to their website for one month.
$300 provides a scholarship to FORCE’s annual conference to one person that could not otherwise attend.

$200 provides life-saving information to 100 people through their newsletter.
$100 provides phone-based support and resources via the Helpline for one month.
$50 provides a package of informational brochures to doctor’s offices and hospitals.

Just think – if $2250 can do all of that – how much good could be done even if we only place among the bottom 195, and win the lowest amount of $20,000! That’s a whole lot of help, to a whole lot of people!

FORCE’s MISSION

“To improve the lives of individuals and families affected by hereditary breast and ovarian cancer.”

To this end, FORCE has eight mission objectives:

• To provide women with resources to determine whether they are at high risk for breast and ovarian cancer due to genetic predisposition, family history, or other factors.
• To provide information about options for managing and living with these risk factors.
• To provide support for women as they pursue these options.
• To provide support for families facing these risks.
• To raise awareness of hereditary breast and ovarian cancer.
• To represent the concerns and interests of our high-risk constituency to the cancer advocacy community, the scientific and medical community, the legislative community, and the general public.
• To promote research specific to hereditary cancer.
• To reduce disparities among under-served populations by promoting access to information, resources and clinical trials specific to hereditary breast and ovarian cancer.

Why is all of this important? As someone who has a BRCA genetic mutation, having an organization like FORCE on my side is invaluable. Without knowledge of what these genetic mutations mean, people can and do die from hereditary breast and ovarian cancer. Spreading information saves lives, and provides much needed peace of mind, education, and emotional support for those of us afflicted with this mutation.

If you are on Facebook then it’s very simple to vote. First click here:

The next step is to join the movement by scrolling down just a little bit on the page & clicking the ‘Like’ button.

Next step: Click the big green ‘Search’ button and copy this text: Facing Our Risk of Cancer Empowered and paste it in the box that says ‘Charity Name.’

Click the big blue ‘Search’ button to the right of that.

After you click that, you’ll see Facing Our Risk of Cancer Empowered in blue lettering. Click it.

Scroll down & check the box that says: “Please display my name and profile picture below so this charity knows it can contact me to get more involved.”

Click submit. A ‘Request for Permission’ box will pop up. Click ‘Allow’.

Vote – and share with your friends, and ask them to share with their friends, and so on.

I really appreciate your consideration in voting for FORCE. Although you are only able to vote for each organization one time, you have 20 votes total, so you can look at helping other organizations close to your heart as well! Thank you very much to anyone who is able to vote! I really appreciate your support! :)

Until next time, here’s to FORCE, Chase Community Giving and silicone!