Losing My Mother, Previving For My Children

Thank you to Grey Genetics and Patient Stories for having me on to discuss my journey with BRCA and surgery, but more importantly, for allowing me to discuss my children, who were/are a big part of all the decisions I made along the way.

Please click the image below to hear this podcast.

Show notes from Grey Genetics

At just 13, Heather lost her mother to breast cancer. Fifteen years later, a mother herself, Heather had genetic testing done and learned that she carried a mutation in a BRCA gene. Heather shares her experience as a previvor–from genetic counseling to finding the right doctors to her continued involvement in the BRCA community and the many changes she’s witnessed since she was tested in 2005.

Interview Reference Points: 

Heather learns that she carries a BRCA1 mutation @ 1:20

Making major medical decisions and finding the right doctors @ 7:54

Heather’s children’s books @ 19:59

Heather remembers her mother @ 22:19

Heather’s surveillance today and memories of scanxiety @ 27:24

The Breast Advocate app @ 29:14

Life after an oophorectomy @ 31:30 

Heather’s children’s and their BRCA risks @ 36:07

BRCA resources: then and now and the shift toward shared decision making @ 41:00

Heather’s advice to individuals considering genetic testing @ 43:35

Heather’s advice to individuals looking for the right doctors @ 45:08

My BRCA Story (Heather’s blog)

Heather on Twitter: @expattravelmom

Heather on Facebook

Beyond The Pink Moon Facebook Group

The Breast Advocate app

Breast Reconstruction Resources:

Terri Coutee on Twitter: @6state

The Diep C Foundation

The Diep C Journey Facebook Group

Heather’s books on Amazon:

Why is Mommy Having Surgery? She Looks OK to Me: For families with BRCA risk and undergoing prophylactic surgery and implant reconstruction

This Much I Know

Fat Grafting or No...One of the Most Asked Questions of Me

I had an amazing experience with my surgery, from beginning to end.  I'm one of the ones who truly had a one and done experience.  I chose a phenomenal team at PRMA in San Antonio, using Dr. Chrysopoulo as my surgeon.  Dr. C, as we all affectionately call him, is a microsurgeon and even more importantly, a board certified plastic surgeon skilled in breast reconstruction.  I cannot emphasize enough how important it is to do your research before you settle on a surgeon or surgical team.  You have a choice. You have the right.  You need to choose someone who knows what he/she is doing.  Someone who can connect you to previous patients, someone who can show before and after photos, and most importantly, someone who will listen to YOU.

That being said, I often get asked whether or not I had any fat grafting done after my "one and done" surgery.  The answer is, no.  For me, I feel like my results really couldn't be any better.  Could I be fuller?  Maybe.  Is there animation I wish would be covered?  Slightly.  But is the process worth it?  I don't feel it is, for ME.  Firstly, let me explain what fat grafting is.

File:Breasts.svg - Wikimedia Commons

Fat grafting basically involves taking fat from one part of the body and putting it in another.  In this case, it is most often taken from the stomach or thighs and placed into the breasts via liposuction.  Again, DO YOUR RESEARCH.  You need to make sure the place you're going to does this often, has correct procedures and know how to handle the fat cells properly.  But that's it.  In and out.

So why don't I want to do it?  I don't want to go through any more procedures, I really don't.  But that, on top of the fact that there's no guarantee that the first procedure will stick, added to me thinking it just wasn't worth it.  There's actually a chance that 30-50% of the fat in the first transfer will be reabsorbed by the body.  30-50%!  That's too high for me to think it's worth it.  I'm reading Facebook posts talking about this very thing, weekly.  Women going in for fat grafting, loving the immediate results, but then having reabsorption and having to choose whether to go through another procedure or just leave it alone and be happy with what they have.

So, for those of you who write in and ask if I ever did fat grafting, or why I didn't, there you go.  It was a personal decision and I'm happy with it.  For me, my journey was always about removing my ticking time bombs, not about perfection.  But, I'm pretty damn close, and I'm happy with that.

For answers to questions you might have, check out The Breast Advocate App.

Three Year Checkup After Mastectomy and Reconstruction

On Saturday, March 17th, the day of Irish luck, I had my three year post mastectomy and reconstruction scans.  While my surgery wasn't until the month of June of 2015, I felt like I needed to get my check up slightly early due to some pain and burning sensations I've been having in my chest.  So, I was lined up for the fully gamut of tests...MRI, mammogram and ultrasound.  Enter stress and anxiety.

MRI

Let's flashback to 2013, which was my last MRI I thought I'd ever have, ever.  It was the beginning of the end when it comes to anxiety and claustrophobia.  I'd had MRI's before, as part of my surveillance, but something about this one was different.  I have no idea why I began to panic inside the tunnels.  Not sure if it was the constant clanking and banging noises, if it was because I was face down and couldn't see for so long, or if I was just plain scared, but I panicked during that one, unable to continue, stopping the scan early, and that was the end of them, or so I thought.  

I'm now 3 years post mastectomy and reconstruction, so it is needed to check on residual tissue as well as the implant integrity.  This time, I took a Xanax 30 minutes before entering the tunnel.  I was positioned and ready in the tunnel, where they then inserted the port for the dye, since I have a high fear of needles.  Well, apparently my vein jumped and she missed, causing a lot of pain, and a mess.  She then tried for my arm, not before saying "you have impossible veins."  Thanks lady.  Way to soothe me.  Anyway, port in, I'm in, we're ready.  I did my breathing exercises while in there, in through the nose, out through the mouth, over and over and over.  I'd feel the panic creep up, and go back to focusing on my breathing.  "Now we're injecting the dye so the next 5-10 min are really important that you don't move."  That did it, I felt trapped.  I had had enough of the banging, clanking and noises, enough of the sensation of dye being released, and my breast bone was killing me.  I was wiggling my toes, I was playing with the panic button in my hand, and I was about to explode.  Just as I grabbed the button to press and end it all, the 45 minute session was done.  

I don't think I'll ever get used to an MRI machine.

 

Mammogram

After the MRI, they walked me to the mammogram room, where I was informed that instead of the normal four images, I would be having eight.  Apparently, once you have implants, you have an additional four which are called 'pinching' images.  This is part of the American Cancer Society's recommended procedure.  Several views must be taken to see both the implant and the tissue.  So, the first four are what you're used to, regular squeeze, two angles on each breast.  

The pinch is different.  They literally squeeze the tissue, pushing the implant back and getting as much tissue forward as possible for the scan, and then take an image of just the tissue.  Imaging can only see 75% of your tissue with an implant in place, so 25% is nearly impossible to see...therefore the pinch.  I will say, the regular image hurt more than the pinching, and overall, I felt more discomfort with these images with implants than without.  

http://www.imaginis.com/mammography/
breast-implant-imaging

http://www.imaginis.com/mammography/
breast-implant-imaging

Ultrasound

After the mammogram, it was time for the ultrasound.  My last ultrasound is the entire reason I finally stopped putting off surgery and ran straight to the doctor for a surgical appointment.  Remember, I was diagnosed with BRCA1 in 2005, but due to having children and moving Internationally, there was never a time or a doctor where I was, where the reconstruction part of the surgery could happen.  In 2015, I went in for my routine mammogram and ultrasound, but this time, they made me wait in the waiting room...for a long time.  They finally said they wanted me to see a breast specialist that day as they found a cyst of some sort.  

Now, where I am, preventive mastectomy is not practiced, it's radical.  So, they opt for a lumpectomy and surveillance.  Yeah, not for me, no more, not happening...off to surgery I go.  I went back to the States for surgery.  I was never going to feel that way again...except, well, at March 17th's appointment.  There I was again, same exact room, lying on the bed, praying and hoping all would be fine.  I don't think anyone can ever truly explain the fears and worry we have going through this for most of our lives.  I started mammograms and ultrasounds in 2005....holding my breath every six months, wondering when I'd hear the C word.  I don't think it ever goes away, as it's now 2018, and I'm just as panicked, even with surgery having happened.

The right breast scan took a long time, and she hovered over one area for a very long time, taking still shots and showing the thermal spots.  She hopped over to the left breast, was done VERY quickly, but went back to the right breast.  At this moment, I really started to worry.  She was taking measurements, taking more still photos and staying in the same spot.  Now my pessimistic side appeared.  I just lay there calmly, thinking she'd say something to me, and after last time, surely they would.  But nothing.  When I asked, she simply said the doctor needs to read it.  

It's now two days later, the 19th, and I'm still waiting for results.  All I can think of is that if it was serious, they wouldn't make me wait this long, right?  

I'll be back with an update as soon as I hear, but for now, send all the good juju vibes you can.

Results are in!

I just got the scans back and they are normal.  There are no sinister or suspicious findings.  3 small right benign breast nodules on ultrasound - all normal.  MRI is normal.

Breast Advocate App

As a patient advocate and a Previvor, I'm so excited to be a part of this announcement of the Breast Advocate App.  

From https://breastadvocateapp.com/

Back in 2004, I had VERY limited options for connecting to research, people and options when I received by BRCA1+ results.  I didn't have the luxury of being able to reach out to an extensive group of doctors and women to ask questions, seek opinions and benefit from shared decision making.  I lacked the knowledge and feeling of empowerment I needed.  I think that is why I waited so long to make any decisions about my high risk surgeries.

In 2013, I joined a group on Facebook called Beyond the Pink Moon, which was, at the time, an International private support group for women who are high risk, Previvors, Survivors and supporters.  The group was amazing in sharing stories, supporting each other and sharing some research based evidence.  It was in this group that I finally found the doctor I'd use for my surgery, because of how many people were talking about his work and their satisfaction.  That was exactly what I needed. 

Fast forward to 2015, when I was finally planning my surgery.  Beyond the Pink Moon had grown into an all encompassing network of patients, supporters and medical professionals, all working together to help anyone and everyone make the best decisions for themselves.  At the same time, my Twitter network was growing and growing, connecting more patients, supporters and medical professionals.  The "Shared Decision Making" network was amazing and becoming a norm, quickly.  No longer were people stuck with one doctor making all the calls and leaving patients with no other information, references, options or input.  It was increasingly evident that patients needed each other, they needed to ask questions from multiple sources and they needed to come to decisions with all the information possible.

Now, I'm so happy to say, that the answer to my one wish during all of this, is coming to fruition.  An App is in development, where everyone can get research based evidence, surgery and reconstruction information and options, expert input from a network of highly regarded doctors (including my very own Dr. Chrysopoulo), and a support network of other people walking in your shoes, no matter what part of the journey you're on.  The amazing part, is while this App is in Beta, YOU have a voice.  Sign up and tell them what YOU want in an App. What would have or will help you in your journey?  This App wants to be the resource for connecting our large community and allowing patients to feel empowered with knowledge and resources, no matter what decision they make.

 from https://breastadvocateapp.com/

Please share this news with anyone and everyone who has been searching for more information, support and community in what can be a very difficult and lonely journey.  

2 Years Post Bilateral Mastectomy and Reconstruction

I'm calm.

That's all I can really say.  The past two years have given me a calmness I haven't known since my mother was diagnosed with breast cancer when I was a child.  I always had that fear of the unknown in my head.  I was always thinking of myself as a ticking time bomb, just waiting for the diagnosis.  Because, lets be real, once you have a grandmother and mother go through the breast cancer diagnosis, and you get his with the confirmation that you carry the BRCA1 gene, how could you not?

So fast forward two years from my surgery, and I no longer fear anything with my health.  I made it through my 40th birthday with the biggest sigh of relief, as it was just after my mom's 40th that she was diagnosed.  I don't have to go to appointments every six months for MRIs and mammograms.  I'm "normal".

As for my implants, I haven't had any issues since the "lump" I had in my last update.  It was just surgical scaring.  But lets be real, when you're in a position like mine, you react quickly and get EVERYTHING checked out.  I was relieved to know that my lump was nothing to worry about and I could continue moving on.

The implants themselves look great.  You can't see my scar as its so well hidden underneath the breast, and they feel great.  They look like they did when I was younger, before having kids, not like having implants.  I have no more pain, no more nerve twinges and I even got some feeling back in areas that I thought would be numb forever.  Now don't get me wrong, there are still numb areas, but I'm just happy its not all of it.

Feeling great and traveling the world with a new view of life.

I know there are so many options these days for reconstruction...you just have to pick the option that works best for you.  If you'd like more information about DIEP surgery, using your own tissue instead of implants, please visit my friend's page, DIEP C Foundation.  She has a wealth of information.  Also, reach out to any of the doctors at PRMA, mine being Dr. C, as they truly are miracle workers and family for life.

As for reconstruction updates, I think this is it!  Two years out, doing great!  If anything changes, I'll be back, and if you have questions at any point, please feel free to reach out.  I'm always here, even if I'm not updating on my mastectomy.  Make sure you check out my oophorectomy posts if you feel that you're going down that road as well.

Lots of love.

Heather

My First Lump Experience, After Mastectomy

Let me start with this, EVERY lump and bump will worry me for the rest of my life.  It's not over just because I had surgery.  If a lump forms, I'm going to worry.  That being said, I'm also going to let you know that this lump I found turned out to be a suspected undulation of the implant, so you can continue reading just for the education and my experience.

Thursday

At this point, I'm seven months post surgery, and overall doing great.  When you have a mastectomy with implant reconstruction, you're bound to still have numb areas of the breast, like I do.  When I get an itch that I need to scratch, its sometimes hard to find and satisfy with a scratch, causing a bit of a comical scene.  Two nights ago (Thursday night), while lying in bed, one of these itching scenarios happened, which led me to finding my first ever lump in my breast.

You're probably thinking, "What?  You can't get lumps after having a mastectomy!"

Well, yes you can, actually.  

As many people may know, the risk of recurrent breast cancer after any type of mastectomy is not zero. A woman who has had a mastectomy can still get breast cancer, although there is a very low risk of recurrence. This is because it is not humanly possible for a surgeon to remove every microscopic cell of breast tissue. The goal, however, of mastectomy is to remove any gross visible breast tissue seen by the surgeon. In contrast, at the nipple all that is left behind is skin. (http://medicine.stonybrookmedicine.edu/surgery/blog/faqs-about-nipple-sparing-mastectomy-what-women-need-to-know)

There a couple types of lumps and/or hardness which can occur after a mastectomy with reconstruction, and I'm learning about all of them now, only because of the lump I discovered (See below for different types of lumps).  When I found it, my first reaction, within those first couple seconds was, no, not possible.  Nothing was visible from the outside; no rippling, no redness and nothing sore.  I ignored it for maybe an hour, but then came back to it, making sure I was feeling what I thought I was feeling.  I rubbed it, tried to roll it between fingers...anything I could do to try and decipher whether it was muscle, a true lump or my imagination.

By User:Starr4ever:) (Own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

I proceeded to feel all around both breasts.  Smooth as butter...can't feel a single lump, ridge, fiber...nothing but smoothness.  I went back to this area.  Yep, definitely different.  At that point, I got online and messaged my plastic surgeon (thank goodness for social media).  Now, most people would say, you felt a lump, go get it checked no matter what...why are you taking time to get online?  Well, I was in half panic and half denial, he's my breast surgeon and I was alone in my house.  I needed to reach out, get outside of my own head, and seek advice.  He said it could be fat necrosis or scar tissue, but he knows I won't have peace of mind until I have an ultrasound.

I then messaged my GYN who just completed my Oophorectomy on What's App with what I had found and my surgeon's suggestion.  Again, you're asking why her?  Well, it's night time, offices are closed, and she's online.  I needed to talk to someone here, in Singapore, to get some sort of ball rolling.  She agreed with my surgeon and asked if she should schedule an appointment with someone for me.  I don't know why, but I started to doubt myself at this point, and didn't immediately respond to her.  I became embarrassed.  Am I overreacting?  Is this all because I'm terrified it actually could be something, so I naturally want to avoid it?  Am I making a mountain out of a mole hill? ZERO pun intended.   I'll tell you this ladies, no one can tell you how to react or when to be scared when you are high risk and have gone through these surgeries to try and save your life.  

I finally wrote back and told her I'd wait until my husband got home, and have him see if he could feel what I had felt.  I know, why wait and why did I need him to feel too?  For me, it was like my pregnancy test.  I didn't believe the first one, and proceeded to take three more before believing I was pregnant.  I had to wait until the next morning for my husband due to his late nights this week.  

Friday

When my husband felt, he definitely felt the lump too.  He couldn't tell if it was round or not, or if it was muscle or not.  But he could feel something.  After he left for work, I screamed the F word a few times and I broke down, sobbing like a baby for a few minutes.  It doesn't help that I'm sleep deprived and my hormones are out of whack.  I messaged a few close friends, just for support, because it really can be lonely when you live overseas, and I tried gathering some strength from their positivity.  After pulling it together, I messaged my GYN, as well as my physician/oncologist, Dr. Tucker, and let them know that I was ready to move forward in putting my mind at rest.  Because really, how cruel can the world be, after all I've been through?  It had to be nothing.

I couldn't seem to get an appointment anywhere last minute.  I tried my follow up breast doctor, fully booked throughout January.  Dr. Tucker's office tried another doctor, fully booked.  While this was all happening, I noticed my belly button incision from my oophorectomy was red, tender and slightly oozing.  Two weeks post surgery I wouldn't expect this to happen.  So, lets add one more thing onto the plate and message my GYN again.  Bam, I had an appointment scheduled for first thing Saturday morning, 8:30am (today).  I cried a lot today.  It was a mixture of releasing a lot of tension from this year, disbelief that I am actually going through these movements right now and just overall exhaustion.

Saturday

This morning I was on my way to my GYN.  Upon examination of my belly button after the oophorectomy, I was given some ointment to use twice a day to help it heal.  We then got down to business regarding the breast lump.  She felt the left breast first, getting a baseline of what my new implant breasts feel like.  She didn't want me to tell her where the lump was on the right breast, to see if she could discover it on her own.  Sure enough she did...1:00 position, 1/2 in in size.  She got me into an 11:00am slot with her breast surgeon, Dr. Woon, and I was off, yet again, to another appointment.

Upon arrival at the next hospital, it was lucky that the elevator lobby was so crowded that it began sending me into panic from too many people, because I was able to walk the nine flights of stairs which helped me focus, calm down and exhaust myself a bit.  By the time I made it into the doctor's waiting room, I was too tired to panic or worry anymore.  Dr. Woon called me in, went over my history of BRCA1, surgeries and other health history, then had me get on the examination table.  She felt it right away, and she too wondered what it was.  Out came the ultrasound, but she couldn't find a thing.  Everything was smooth and clear.  No cysts.  She seemed a bit perplexed, so poked a little deeper until she saw some undulations in the implant where I had felt the lump.  She then attributed what I'm going through to just that, undulations.  Now, I'm no doctor, so of course I'm going to relay this information back to my surgeon, just so he can help me understand all this, but he's sleeping right now, so an answer will have to wait. :)  

The one thing that rings in my ears from today, is my GYN telling me, "you're allowed to overreact, because its not overreacting in your case.  We want you to be vigilant, we want you checking and we want to be preventive."  So, while some people will never know what its like to feel a lump, thank goodness, others need to know its ok to panic and its ok to seek attention asap.  

By Burningrome (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

Types of lumps:

Fat necrosis: (I did not have flap surgery, but necrosis can still happen with leftover areas)

Occasionally there can be a phenomenon called “fat necrosis” in the newly reconstructed breast mound. That is when the fat from the abdominal flap does not receive enough blood supply in its new position and forms a scar as a result. It will manifest as a hard lump under the breast skin which can feel alarming upon detection. Your plastic surgeon can usually differentiate between fat necrosis and cancer recurrence on clinical examination. If there is any doubt, then you will undergo a needle biopsy or a MRI to arrive at a diagnosis. (http://www.bra-day.com/breast-reconstruction/)

 Capsular Contracture: (remember my Victoria Secret exercises I do?)

If you had implant reconstruction and you feel hardness in the breast area, it may be the result of capsular contracture. Capsular contracture occurs when a hard tissue capsule forms around the implant. It can be small and barely noticeable, or it can become very painful and distort the shape of the breast. Let your doctor know if you see or feel any of these symptoms. (http://www.breastcancer.org/treatment/surgery/reconstruction/screening)

Scaring:

Plain and simple, it could be a bit of scaring from the overall surgery, since there was scraping and disruption all over. 

Calcification Deposits:

Hard lumps under the skin, around the implant.  They can be mistaken for cysts/tumors.

Cysts:

I can't find clear/medical evidenced based information on this right now, but I read a few (ok, a lot) of forums where women find lumps and bumps all the time after mastectomy and reconstruction surgeries, most ending up to be benign cysts.  Yes, it's totally plausible to continue getting these, even after you've had a mastectomy.  Many of the women spoke of these being skin cysts, found in the remaining tissue after surgery.

* Update...nothing was wrong, it was just part of the implant. Everything is ok, but there's no such thing as overreaction when it comes to lumps with a family history.

Thank You 2015, For Saving My Life

2015.

I could say this was the worst year of my life.

I could say I want to put this all behind me and forget about it.

I could say so long 2015, bring on 2016.

I could say "why me?"

But I won't.  Instead, I will say thank you to 2015.

This year has happened for a reason.  This year makes me, me.  This year is an important marker in my life...and important year in my dash.  On March 3, 2015, I blogged for the first time on this site, when I truly began my journey of healing and saving my life.  I had finally made the decision to have a preventive mastectomy with reconstruction in June 2015, ten years after finding out I was BRCA1 positive.  It was Thanksgiving Day, 2014, when I received my first abnormal mammogram, and I was tired of playing it safe through screenings.  I wanted more assurance, I wanted to rid myself of the possibility of cancer.  I wanted to focus on living, not live in fear of dying.

My mastectomy journey was actually a beautiful one.  I was connected to the most wonderful team at PRMA in San Antonio, Texas, including Patient Liaison Courtney, Nurse Denise and the amazing Dr. Chrysopoulo...all friends still today.  This is my dream team who supported me before, during and after surgery.  My friends who are still here today, checking in on me, sharing new studies of information and who are truly invested in me as a patient.  They helped make Wonder Woman possible, because even Wonder Woman needs a dream team.

I did it for her.

Choosing a mastectomy wasn't easy, nor did it come lightly.  I researched a lot, blogged a lot and had a huge support system from friends and my online community.  It was a long road to recovery, it required a lot of strength and positivity (as much as possible) and it was the best decision I ever made.  I had made the choice to save my life and it was the right one for me.  I went from an 85% chance of breast cancer to 1-2%.  My fears of getting breast cancer are gone.  My fears of having my children watch their mother suffer, like I did mine, are gone.  My fears in general...are gone.  And in return, I was fortunate enough to have an amazing microsurgeon take away my mutations and give me my beautiful womanly body back, all while I was sleeping for what seemed a short moment in time.

My recovery and my blogging from my mastectomy turned into a blessing.  My voice reached far, letters and words of support poured in daily, women confused turned to me asking for advice...and three bucket list items happened within the next few months of recovery.  1.  I published a book based on my own experiences with my mom.  2.  I was asked to write an article for Parenting.com.  3.  I went to Bali to complete my final healing...physically and mentally.  I'm often called brave.  I don't see it as brave.  I see it as a choice I made and went through with for a brighter ending.  Wonder Woman...I'll take it.  Not because I have super hero powers, but because I made myself wonder just how much I really am capable of doing and how much power I really do have inside.  Anyone can be a Wonder Woman...or any other inspirational character you choose.  Dig deep within and find what makes you happy, feel strong, feel womanly and most importantly, makes you feel like you.

I did it for her too.

In July of this year, I was back in the doctor's office, just over one month after my mastectomy, preparing for my bilateral salpingo-oophorectomy.  I tend to do things all at once, both feet in and jump.  I went from college to post-graduate school to earning my Master's all in sequential years because I just wanted it all done.  I set my sights on a vacation spot, and before my husband can answer the question "do you want to go there?", I've already priced it out and am asking for the credit card.  I get an idea and I go for it.  I'm a doer, so it really didn't surprise anyone that I decided to have my oophorectomy within the same year as my mastectomy.  Let's face it, I was turning 39 in November of this year.  How cool would my 40th birthday be, in 2016, knowing all of this was behind me?  So, in for the pre-op appointment I went, learning all about my next steps.

While my oophorectomy would be done laparoscopically, requiring a mere two weeks recovery vs. the six to eight for the mastectomy, I was more nervous about this one...even in recovery.  While I would yet again be in great hands with the wonderful Dr. Dharshini, there were so many more side effects from this surgery which could affect me for the rest of my life; Heart disease, lung cancer, calcium deficiency, hot flashes, dementia...just to name a few.  But I had to have faith that once again, I'd be reducing my chances of ovarian cancer, from a whopping 50% to 1-2%.  Those mutated genes would once again, be defeated.

And I did it for them.

Three days ago, four days before 2016, I had my oophorectomy and everything went textbook, so I'm told.  I left the hospital the next day, am able to walk as much as I want, have minimal pain (despite the gas) and am very thankful for the opportunities that exist for women like me.  Yes, there are many other things I'm going through as side effects to the surgery that cause me tears today, but let me focus, while I can, on the blessing the surgery has given me.  I'm alive, I'm here for my husband and children and I will be for a long time.  Now, after two surgeries, I've done all that I can to save my life from BRCA1.  I have defeated it.  I can finally breathe.  I can exhale.  I can live.

So, here I sit, in my living room on New Year's Eve, looking at my three beautiful children, and I find peace in 2015.  I made MANY new friends, I accomplished things I only dreamed of, I found peace with my past and I'm now thankful for my future.  I send strength to all of my lovelies out there who are searching for answers, facing their struggles and looking for comfort or peace.  A warm hug from me to you for 2016.

Four Months Post-Op & October

Four months today, I'm doing great.  I still have pain, I still have this awkward relationship with my breasts because of how they feel, not because of how they look, and I still thank God and my doctor that I had this amazing gift of life given to me.  But on this anniversary, I focus not on my healing process, but on a greater cause...awareness and action.

In an ideal world, I'd like to think that everyone, all over the world, would have access to understanding their genetics and risks without heavy co-pays.  I'd wish that every woman had access to mammograms when needed, treatment if necessary and education at her fingertips.  My hope would be that every human would already know so much about breast cancer awareness, so that all of the money spent on producing pink items could just go directly to helping women and men get the help they need.  My dream would be that all this money we raise year after year would have found a cure by now, and more importantly, that a majority of the money made it into research/grants/and reduced or free access to care.  In an ideal world.

© Nevit Dilmen [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0) via Wikimedia Commons

Every year till now, October approached and I would go into it with a pit in my stomach.  Inevitably, every October, I'd have those who were reminded that I lost my mother at a young age to breast cancer and felt badly, I had those who didn't understand what it was like to be  BRCA1+ for 10 years and not do anything about it and I had those who would just send the "I'm thinking of you" message during the month to let me know they cared.  All perfectly fine in their own ways, but I would get upset inside because I was so conflicted about this month in question.  I had a love/hate relationship with October.  I hated the Facebook secret messages that were hoping to spread awareness because I didn't think it should be secretive, I stayed away from purchasing anything breast cancer pink because it reminded me of pain not happiness, I hated seeing the statistics that so little of funds raised actually made it to where it should go and I wished the month would be over so that I could go on living and sharing my story in my own way, with just as much passion, throughout the whole year, not just in "Pinktober".

I sit here today, four months after my preventive surgery, taking a new turn on life and my own understanding of October.  I've decided it is what you make of it.  Some people love the pink aspect of October, seeking comfort in all of the support and sharing in a larger community beyond themselves.  I'll admit, I love the smiles I see on people's faces in the photos from events, I love my friends who are genuinely fighting for something they are passionate about and I love that the general public pays a little extra attention to an important cause for a month.  I love that voices are heard...or are they?  There are those who still hate October, like I once did, for the commercialism of it all, wondering why we can't just be proactive all year long without the bells and whistles and extra effort during one month of the year.  I have decided that I sit on the wall between both sides now, not really in one court or the other, and here's why.

October Can Be Great...

I lost my mother to breast cancer, and I didn't handle it well.  After her passing, I felt like I had failed as a daughter, as a supporter.  That is when I threw myself into the yearly Susan G. Komen walks and the American Cancer Society's Relays for Life as a way to try and heal.  My friends would join me and I felt like I was doing as much as I could, coming to terms my own way.  I was the one asking for donations each year, putting the sign on my back as a symbol for who I was walking for and feeling like I was making up for time I'd spent in the wrong way.  I'd wear the pink ribbon given to me because I was proud to represent my mother and grandmother in any way that I could.  I'd cry at some point in each event, missing them terribly, and feel comforted that others around me were feeling the same.  But there were always things missing.

While I thought I was doing good for others and trying to love the community spirit that these events brought, I was at the same time ignoring myself.  Never once during those years did I stop and ask about my own health and risks.  Yes, I knew there was something going on in my family that made my future look questionable, but during the ages of 13-25, I never pursued any of the many services offered to someone like me, because I didn't know I had a gene I had to worry about.  Here I was, supporting breast cancer "awareness", but it wasn't hitting home because there wasn't specific information to me, to my situation.  Where was my action?  A month dedicated to helping people gain access, information and support, and I was solely looking at it as a way to deal with my mother's passing.  I then began to think...if there's so much awareness, year after year, then why was my mother passed up for an elective mastectomy and reconstruction when she asked?  Where's the actual education?  October needs to change...we can't isolate Breast Cancer into October.

But So Can the Rest of the Year!

On the flip side, four months ago I had my surgery and I blogged my way through it all.  I never realized how powerful my voice could be.  Here I thought Angelina had taken care of all the hard work, bringing awareness of BRCA to the masses, but I quickly realized...MANY never even heard her story.  Was MY little voice helping to  bring awareness to someone via my blog, my book and now, in the month of October, my article for Parenting.com?  Yes, it was.  I meet people weekly who have never heard of BRCA and I'm shocked.  I realize that not everyone attends an October event, nor follows Hollywood news, especially in different parts of the world.  A woman, just this last week, made a comment about all the pink around and I told her it was for breast cancer awareness month...she had no clue.  For the past year leading up to my surgery, I was the one educating people around me without the pink accessories and fundraisers.  I enjoy telling my story, helping other women understand their genetics, their options and especially how to deal with it all as a mother.  During eleven other months, people still need to be educated.  There will always be someone who just doesn't know, and I'm so happy when they cross my path.

So, here I am, coming to terms with my own understanding of the month of October.  I appreciate those who love it, share in it and find hope through the communities and organizations spreading the word.  I also appreciate those who don't like it for whatever their reasons are.  I now realize that my October doesn't have to be filled with sadness, anger and resentment.  My October is now a time to reflect on my journey and how I decided to change my life's path.  My October is now a time to be there for anyone who needs an ear or a shoulder or some guiding information.  My October will be for advocating about testing, breast reconstruction options and pushing people to listen.  But the rest of the year will also be the same, filled with the same passion as my now October.

Three Months Post-Op

You're a pain in the...

Boob!

No, I'm not talking about my husband, I'm talking about the actual recovery I'm still going through.  Today marks three months since my surgery.  Here's what's happening at this point, but if you need to refresh what was happening at two months, read here.

Follow Up and Physical Therapy...or Not

Yep, the twinges of pain, sore muscles and tightness are still with me...although MUCH less.  This is due to the fact that I can only do so much on my own with the exercises given to me, but I really need physical therapy to work on the scar tissue and muscles.  Having had the surgery overseas and leaving behind my amazing surgical doctor and nurse, I'm left to pickup the pieces back here in Singapore and its not going as well as I had hoped.  

I came back to Singapore and had an immediate follow up appointment with a doctor here.  A doctor who was amazed that I was up and about and feeling/looking so great a month out.  A doctor who knew nothing about Alloderm, and was so intrigued, that he did an ultrasound just to see inside.  A doctor...who I cannot seem to get an appointment with any time soon.  All I need is a referral.

I've been feeling pretty great since my return to Singapore two months ago.  I've been working, I've been completely off any medications (even Advil) for a month and I'm even able to shave my legs with less pain from repetitive motion of the lateral muscles on the sides of the breasts.  However, I do experience tightness that radiates from the lateral muscles on the side of my left breast into my armpit, which not only causes some twinges of pain, it limits my range of motion.  I need this looked at by a physical therapist.  Sounds simple, right?  I'm at my wit's end trying to get a referral from above mentioned doctor to see a physical therapist.  Surely there has to be an easier way.  As of now, there's a 2-3 week wait to get into the doctor.  Let's hope this happens sooner by some act of goodness, and I can start therapy sooner.

Nipples

Wow, I don't even know what to say here.  They still hurt.  They are quite tender, which I didn't expect this far out from surgery (or is three months not considered "far out" for a surgery like this?).  I'm beginning to wonder if maybe the soreness I feel is from tight muscles and scar tissue pulling at that area?  

Aesthetics

My scars are still rocking on their recovery.  I'm using my InviCible every day and watching them fade more and more.  As for my breasts, they are WAY softer.  I didn't think they could get softer than a month ago, but here we are, another month gone by, and they are even better.  My right breast still looks fantastic, while the left breast is having a little bit of a "tugging" issue due to scar tissue.  Again, physical therapy needed now.  Because of the scar tissue, there's an area under my nipple which is almost pulling inward.  It's slight, not even my husband notices unless I point it out, but I see it.  I say this just so women are aware of things that CAN happen after surgery.  To me...I'm just happy I lessened my chances of getting breast cancer.  I can deal with this slight imperfection.

The strangest thing, and maybe too much information for some, is the way the breast moves when the muscles are tightened.  Imagine pulling/lifting or doing anything that would contract the chest muscles.  Then picture the breast trying to move, like a natural breast, but it doesn't.  The implant stays where it is and the muscle tries to go in the direction forced, so you're left with this indenting, rippling and what not.  Thankfully I'm usually always wearing a bra or shirt so that no one can witness this strange occurrence, but again, I'm here to be truthful.

Emotions

I think I'm beyond the emotional roller coaster that is related to the overall surgery preparation and immediate recovery.  I'm back to all my daily routines and I don't break down in tears at random.  However, if I'm being real and totally transparent here, this is something I posted on August 28th:

Some days I wish my boobs were removable and I could just take a break from them. A break from the soreness, the twinges and itches I can't quite get to and the overall weirdness of them.

It's true, I can't help but feel what I feel.  They are foreign. They are strange.  And they take getting used to.  I do wish, some days, that I didn't have the surgery.  But I'm quickly reminded of my WHY.  I saved my life and really, if faced with it again, I'd do it.  This is just a new me I have to get used to, but I don't doubt that the strangeness of it will every go away.  They'll always be a daily reminder of what I did and why.  And maybe that's ok.  If I never did it, I'd never have this story to tell, I'd never have written a book, and I'd never have met so many wonderful people to add to my life.

By Nevit Dilmen (talk · contribs) (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html)
via Wikimedia Commons

Two Months Post Op and Back to Work

I've just made it to being two months post op.  Another milestone in my journey, which is still unfolding.  Looking back, it seems like so long ago that I was planning for it and waiting for insurance approval.  While doing great, I still have some daily reminders that I'm well in the middle of the healing process.

I hear stories of women jogging at six weeks out after having the same type of surgery, and I'm amazed.  More power to you!  I'm not there.  LOL!  I did, however, go back to work full time.  That is what sent me into examining how I really feel at two months out.  I'm lifting, pushing, walking, and everything in between...I'm an elementary teacher.  I'm testing my body and my body doesn't like it, for now.  I'm coming home, popping pain relievers such as Advil, and finding myself in bed by 8pm.

Pain/Tenderness/Tightness

In order to explain the pain I feel these days, its important to see a diagram of what I had done.

http://www.tavmd.com/2013/09/08/complicated-breast-augmentation-surgery/

AlloDerm  The AlloDerm is what was used to form a hammock, of sorts, to support the implant.  This is also what will hopefully prevent capsular contracture due to the scar tissue not wanting to bond to it. While AlloDerm is great, you can see the number of stitches needed to hold it in place...all securing it directly to the muscles.  Enter my current pain.

If you look at the high left corner of the AlloDerm in the above image, that's the point at which I have a lot of tenderness and aching right now.  In my right breast, I can actually feel the tiny "bump" at that intersection of AlloDerm and muscle, which may be the stitch and/or scar tissue.  When I press on it, it slightly "pops".  I've been instructed to massage that area as best I can, in order to break up any potential scar tissue which may be building.

Lateral Muscles

In addition to that area, I'm also having overall tenderness and pain in the lateral muscle area on both sides.  This I attribute to several factors.  1)  possible scar tissue forming at drain sites, 2) going back to work and using my muscles more than I have since surgery thus far, and 3) stitches being pulled from the overall activity increase and potential scar tissue.  I am also massaging these areas as much as I can tolerate.  I was allowed to begin side sleeping, at a gentle incline with soft support underneath, but some nights, it's just not comfortable and not worth the aching.

Armpit/Arms

I have tightness in my armpit and leading just into my arm.  While it's not cording, or doesn't seem to be a bad enough case to worry about, it's limiting some of my range of motion.  I am doing my daily stretches and hoping that this is just a time issue.

Nipples

The nipples are still quite tender.  I keep telling myself this is a good thing.  It's sensation.  It's feeling.  It's nerves regenerating.  I was hoping it would have gone away by now, but I'll take it in hopes that I really will retain some feeling after the healing is complete.

Bras

Now is NOT the time to try out the strapless bras as I learned the hard way.  I LOVE my Genie Bra line, ordering four different styles in black, nude and white.  I thought I'd try the strapless one just out of pure excitement.  Well, within hours, I was experiencing a lot of tenderness in my chest muscles above the implants.  I guess it was too much weight to support at this time.

Aesthetics

They look great.  There might be slight imperfections that only I notice from my angle of looking at them, but overall, they are great.  They've settled, they're soft and they look pretty darn natural for being implants.  The positioning couldn't have been better.  It is because of this that I realize what a blessing it was to find a micro surgeon, someone skilled at the teeny tiny details.  The scars in the inframammary fold are looking amazing.  I've been allowed to apply my InviCible scar treatment for the past 3.5 weeks on both the drain sites and the scars.

Medications and Emotions

I have been off all of the major medications for a long time now, as they never really suited me.  However, I found myself popping half a Xanax at work this week, as I felt the heart begin to beat rapidly and the overwhelming sense of nausea took over my body.  The scenario of seeing all of my co-workers again was a bit more emotional than I expected, as the obvious first questions are around the surgery.  Not that I don't like talking about it, it's just that sometimes I feel like my boobs enter the room before I do, if that makes sense.  No one made me feel uncomfortable, it was all my doing, all in my head.  That, coupled with the overall stress of being back to work, just sent me into a tail spin.  That's the only time, in a long time, that I've needed anything more than Advil.

Having said all this, nothing is really limiting me from completing my daily activities.  I'm doing all the normal daily routines I was doing before at both work and home, and perhaps doing too much (like carrying things at work that I shouldn't be), so I think the pain is all just part of the process.  Massaging is just my number one priority right now.  Well, massaging, getting physically and mentally fit again and getting to sleep comfortably on my side are my priorities right now.