The Power of Social Media

Who would have thought, ten years ago when I learned of my BRCA1 results, that social media would have ever played a part in my treatment plan.  Ten years ago, I had just started working for an online University, and I thought that was crazy enough!  But to think that I'd find my doctor, seek referrals, "meet" patients and even plan my surgery via social media channels...the mind boggles.

Today is Social Media Day 2015 (#socialmediaday2015), so I felt it appropriate to take a minute to reflect on my social media journey which has lead me to sitting here in Texas.  Because none of this would have come to fruition without it.  Let's face it, I was living in Dubai for the critical part of finding my doctor, which ended up being in Texas, and living in Singapore when dealing with insurance, finding lodging and planning the rest of the trip.  Medical tourism is a hot topic, and a lot of people flock to Asia for the best of the best...but they're flocking for cosmetic surgery, not reconstructive surgery, so referrals I was getting within the region weren't satisfying my type A needs for perfection.

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

So, back in 2013, I came across this little group called Beyond the Pink Moon, to which I was invited by a friend of a friend, Lori, whom I had never met, but had becomes friends with on Facebook.  There I was, plopped into an online community with admin and author, Nicki Durlester and previvor friend, Melissa Voight; a forum for discussion regarding breast and ovarian cancer, as well as genetic mutations increasing hereditary cancer risk, including BRCA1 and 2.  I laid back for a moment, reading all these stories, some breaking my heart, some bringing me tears of joy.  This group seemed close knit, they all trusted each other and shared anything and everything.  Soon, I was ready to ask some questions.  My first interaction was on November 5, 2013; it was my introduction:

Hello! Brand new here. I'm 37, mother to 3 kids and wife. I'm currently an international teacher living overseas. I tested positive for BRCA1 in 2005, and I'm now ready for surgery. I'll be flying to the States for it next July. I'm now going through the motions of finding a doctor, calling insurance and figuring it all out from overseas, which is hard! Hoping for a direct to implant procedure. If anyone has experience with Cigna insurance, please do tell! Thanks!

Well, it was a lady named Laura R. who immediately peeked my interest with her reply:

If you're looking for a doctor, PRMA in San Antonio is great. They take all insurances and help with travel. I just heard they have virtual consults too. 

Ding!  Virtual consult.  I was oversees.  I needed someone who could help me through the Internet, and she recommended the four letters that I couldn't ever get out of my head...PRMA.  I must have moved quickly (type A) as the next day, I replied to another 'Lovely' with: 

I'm in your EXACT  position (name hidden)! I just joined the group yesterday. I'm older, turning 37 this month, diagnosed BRCA1+ in 2005. I'm filling out my virtual consult form for Dr. C right now. Hoping I'm a candidate for one step, direct to implant reconstruction! I'll have to wait 'till July as I'm living overseas. Good luck!

Now, how did I know to ask for Dr. C?  This is an interesting one.  I had many of the ladies PM me, all talking about Dr. Chrysopoulo.  I then met dear Wendy on November 6th, where she gave me what I needed to hear, " I traveled a little over 8 hours. I had a one step and was there a little less than a week. We drove."  Ding again!  Recovery with this procedure would be better than anticipated given my time constraint.  Wendy and I continued talking, and still do to this day.  All this happened within TWO DAYS.  Are you seeing that?  Discussions, relationships and referrals, all via a Facebook group.

Well, we all know what happened next.  Due to being relocated, my surgery never happened in July of 2014.  My next post on Beyond the Pink Moon happened on January 11th, 2015, the day I had been going crazy, starting over, trying to figure out how to have surgery overseas again, and who to pick, knowing Dr. C was still in my mind, for my surgeon.  I had all these referrals from ladies for California doctors, but nothing was working out.  The Pink Moon Lovelies were so helpful and provided me with so much information.  They felt my pain of trying to plan an overseas surgery, without being seen in office first.  I had my friend in the US calling these doctors offices for me (time zone issues) and asking all the initial questions for me.  It ended all the same, in office consult before they could discuss surgery.  In the back of my mind, I kept going back to Wendy and Dr. C.  It was then that Laura R's voice popped back into my life with...

Heather, PRMA is fabulous and one of the best! Dr. C is a top notch doctor and you would be in the best hands. Dr. C did my DIEP flap and he did one-step on Wendy.  Dr. C is a perfectionist. He's an exceptional doctor. And so caring!  There's a bunch of us with personal experience with Dr. C so rest assured you're in excellent hands with him. 

Another Lovely wrote:

 I haven't had PBM yet, but when I do, it will be Dr C at PRMA. I have flown all over the United Stated consulting with 5 different plastic surgeons. I liked Dr. C the best of every one. He was incredibly compassionate and his results look so great. I think you'd be in fantastic hands.

That was the day I knew, I knew Dr. C was my doctor and I'd be turning my life over to him.  I couldn't believe the amount of information I received from an online forum.  Patient referrals mean so much to me and so much to many.  Just knowing so many women were so happy with their outcome spoke volumes.  I had my Skype chat with Dr. C in February and all was good.  It was perfect.  It would be him.  Now, my addiction to social media means I ask a lot of questions, I second guess, I research, I freak out a bit, and then I go back to calm.  Dr. C caught me in the middle of one of these cycles when I was second guessing things.  I said I was listening too much to other people, Nicki told me to put my earplugs in to which I said "I will" and "I know my surgeon will make me look lovely."  Well, I didn't know Dr. C was on the forum.  I got the reply, "Yes I will Heather."  LOL!  My doctor, involved in social media.  

Well, over time, I met many, many more BRCA friends via Beyond the Pink Moon and Twitter, like Terri, Tobey, Lisa, Karen, Georgia, Amy and Brandi.  There's a huge community of advocates out there sharing their stories for people like me who had no clue where to begin.  There are doctors who are willing to chat online, add to conversations patients are having and help educate.  It's amazing where social media has come.  I'm so glad that forward thinking PRMA is getting ahead of the game, paying attention to what patients want, what we need, really.  They are getting involved, listening and learning, and putting it to use. 

Happy Social Media Day 2015

How Do They Feel?

I'm not embarrassed by this question, nor do I feel like I should be.  Let's face it, its not an easy question for many to ask in the first place, and the fact that some feel comfortable enough asking me, makes me want to help them understand.  Friends, family and even strangers from the online world have asked me, "how do they feel?" Well, I'll do my best to describe it.

The Implant

There's a reason there's the term called 'gummy bears' floating around when referring to a particular type of implants.  I say type as there's confusion as to whether there really is an implant called the gummy bear.  As far as I know, there's not.  There was an initial implant the FDA approved which got the term gummy bear, but it really just means a highly cohesive gel implant.  This term was coined by plastic surgeon Dr. Grant Stevens, of Marina Del Rey, California.  The implants I received, not actually called gummy bears, are a high-strength, smooth, non-textured, cohesive silicone gel.  This means, when the implant is cut in half, it retains it's shape and it doesn't ooze out, much like a gummy bear would do if cut in half.  Well, there you have it, that's what it feels like when touching my breasts.  There's no longer any texture to feel inside the breast, no fibrous areas, lumps, etc.  It's just like pressing into a smooth gel.  Some feel that using the term gummy bear trivializes the needs and reasons behind getting implants.  I have a different way of looking at it.  It was how we were able to explain my surgery to my kids.  We used gummy bears as an example, they got it.  It was no longer scary to them, and now they can talk about it.  There's more on that to come.

By FDA [Public domain], via Wikimedia Commons

Sensations

At this point, I'm two and a half weeks out from surgery.  The breasts are beginning to soften, the implants are beginning to drop and settle into place.  I wasn't sure what I would feel, if anything, after surgery.  Your breast tissue is being taken out, all of it, and if you're lucky enough to have a surgeon like Dr. Chrysopoulo, he will take the painstaking time to make sure any traces of tissue fiber are taken out of the fatty layer just under the surface of the skin as well.  In doing this type of surgery, you risk cutting nerves, that's a given.

I was amazed that I could feel the nurses and doctor touching areas of my breasts upon examination hours after surgery.  For the most part, the majority of my breast surface was numb...I only felt the idea of someone putting pressure in an area.  However, there were parts where I could actually feel the touch.  I was ecstatic.  It only got better from there.  As days passed, I kept telling my husband that I could feel more and more of my breasts when showering or being examined.  It was when my nurse commented on my nipples reacting upon examination that I got really excited.  That means there's nerves.

I never thought I'd have feeling in my nipples again.  So many stories I read, women have lost that sensation.  I'm so thankful that mine are at least reacting to touch, even though I don't have full feeling in them as of yet...who knows, I might someday.  What I do feel in my nipples is a soreness, much like your nipples feel when pregnant or nursing...they ache to the touch.  This is different than feeling the gentle touch to the nipple, I don't feel that nearly as much right now.  But I'm happy to feel the aching pain, because it means I can feel, and I'm happy they react.  I've got to focus on the positives.

As for the breast itself, each one is completely different.  My right breast has different areas of numbness vs. my left breast.  For my right breast, majority of the underside is completely numb, but the entire upper portion and leading to the sides retained complete sensation, from just outside the nipple to the edges of the actual breast.  For my left breast, majority of it is numb until about two inches out from the nipple, at which point I have complete sensation again, all the way around.  Remember, I'm only two and a half weeks out.  I have faith that more sensation will return with given time.

But for now, I'm so completely happy with what I have.  I've come out on the other side better than expected, and you can't take that happiness away.

A Husband's Story- Finding Out

It’s hard to put myself in “her” head. It’s hard to fully empathize. My parents are still alive. I did watch my paternal grandmother go through breast cancer and a subsequent mastectomy, but I was about 13 and fairly detached from the situation. But I’ve seen the pain and fear in her eyes. I know that what she experienced with her mother was horrifying for her, and I know that her biggest fear now is watching her kids experience the same trauma of watching their parents suffer. That is the fuel that I use.

To be clear, I’ve had a lot of time to prepare for this. We found out that Heather was BRCA1+ shortly after our oldest child was born. Around 10 years ago. At the time there were options for mastectomy, but nothing was clear about reconstruction. Honestly I don’t recall the options that were presented, but I do remember that we considered them, and we also knew we wanted to have more children. (Two girls later we now also have two future BRCA1 tests yet to be taken, but that will be a future chapter.) After several years of delays, here we are. 

Coincidently Angelina Jolie had a preventive mastectomy recently. The publicity certainly made it easier to explain when people asked what Heather was having done. “She’s having the Angelina surgery.” They didn’t know that we had been planning this for nearly a decade, and that’s ok. Angelina going public brought awareness to the BRCA mutations. Before that, most people’s eyes just glossed over when we talked about it.

Three reasons for her "why"

Let’s be honest here. As Heather has admitted in her blog, she’s excessively Type A. She did 99% of the planning and work leading up to to the actual surgery. I made some calls for insurance, and I booked the car and part of our lodging for the month, but she did all of the hard work. She worked tirelessly with PRMA to ensure everything was in place. She followed their instructions to a tee, including cutting out Starbucks and the occasional after-work glass of wine, during some of the most stressful weeks we can remember. She even worked to finish a lifelong dream of finishing a children’s book to help small kids and parents communicate with each other about going through cancer. Amazing, right? So before I say anything about how much I did to support her, I want to make it clear that it’s easy to support a woman who is incredibly strong. And if you’re reading this, considering this decision for yourself and thinking that maybe you couldn’t be as strong as Heather, maybe one of my favorite quotes can help you. 

“Courage is not the absence of fear. Courage is action in the presence of fear.” 

-unknown 

Just choosing to go through with this surgery is a huge showing of strength and courage. There was a LOT of fear here for Heather, but not more than leaving our kids behind too soon. And to reiterate, this decision isn’t about us. It’s about taking steps within our control to limit the possibility of our kids losing their mother the same way she lost hers.

- Jared

Slow Down, Type A Not Needed

There's no award for the fastest healing nor the for the one who complains the least.

I'm in the recovery stage of my journey.  It's a very strange place to be, a bit unsettling.  The planning phase kept me very involved, occupied...it gave me lists to check off which I love doing.  I was taking care of travel plans, packing the family and making lodging arrangements.  The immediate pre and post surgery stages involved in the moment concentration, focus and healing thoughts.  People wrote to me daily, engaging me in conversation, taking my mind off things.  I journaled daily during my recovery phase for the first two weeks post-op, putting my restless energy towards the better...I hope.  And now, I'm in the post-recovery recovery phase.  It's that part where you're more independent, you are feeling good, you're out of your doctor's immediate care, but you you're still recovering.

Be kind to yourself during this phase.  I'm learning that it's just as fragile as any other part of your journey.  I learned the hard way, that while I may be "released", my mind and body still have a way to go.  We left San Antonio yesterday.  It was like a graduation in a sense.  I had completed my assignments and there was nothing further to do.  I passed the test.  We decided to make our way to Austin, Texas, a change of scenery, one more city in Texas to see before heading back to Houston and subsequently, Singapore.  My husband was dying to eat at the Salt Lick BBQ in Driftwood, so we detoured for dinner before hitting Austin.  

Slow down and take the time to see everything around you
that you'd normally whiz by.

While I do feel good and look great, I pushed it too far, once again.  We had spent three hours in the car by the time we arrived in Austin, plus another hour eating, all of which I was sitting upright.  Prior to the drive we had been getting ready and packing suitcases.  I hurt.  I was tired.  I cried.  I have this false sense of "I'm done!  Now what?" mentality.  It's like I need something to do at all times.  School is out for the summer, so I'm on holiday.  When I go out right now, no one would have any clue that I've just had major surgery, so why should I feel or act like I did?  I should be on holiday.

It's hard to slow down if you're not used it, if you're a little OCD or Type A like me.  But I really want to caution those who are, please slow down.  Don't think because you look fine, that you are assumed to feel fine.  Let yourself go through every phase of this journey that you need.  No one can dictate for you when your time will finish.  Give yourself permission to take time.  Everything still goes on around you just fine, as I've learned.  You have to let go of things and trust that you are doing the right thing for yourself.  

And please, find your outlet.  Your best friend, your spouse, your doctor...whomever, whatever.  Mine is writing.  It helps me process, it helps me to keep moving forward.

Day 14- Dear PRMA

Dear PRMA,

Happy two-week-a-versary to me today.  It was two weeks ago that I was going into surgery, ready to take charge of my life, and hopefully change the course it was on.  Your entire team guided me through the process from beginning to end, and it all started with Courtney.  She's absolutely amazing at what she does.  So kind, compassionate and so completely understanding of those who might be a smidge type A...like me.  She got me through the insurance approval waiting period which was hell, and made a special effort to see me upon my arrival.

I've had a great experience from the initial consultation, to surgery to recovery, maybe too good, as I kept overdoing it each day after the surgery due to the energy I had and the limited amount of actual pain.  Sure, some days were harder and there was intermittent crying, but I had it pretty darn good throughout this entire process.   I owe that to you and your expertise.  You guys helped me keep the right mindset.  You guys were the best of the best cheerleaders.

I got excited on the days I felt great during recovery.  I wanted to explore, see the sights of San Antonio and hang out with the family outside of the hotel room.  But all of my enthusiasm could have come at a cost as I developed seroma as of day 11.  As uncomfortable and completely unattractive I felt in the band, I was sill determined to get out each day and explore.  I just felt good.  Perhaps I explored a bit too much, pushing my body more than resting it, and my seroma increased.  Whether or not it was my fault for being too active, the point is, I'm not very good at just resting.

Having fun on meds, killing time, waiting for aspiration.

Today, on my two week post-op visit, my seroma needed to be drained with a fine needle.  Prior to leaving the hotel, my husband looked at me and said, "babe, I really like your boobs.  I've been looking around at other overly noticeable boob jobs ever since your surgery, and seeing you today, in your dress, I noticed how great your boobs look.  They are just the right size.  They are perfect"  That, right there, boosted my confidence today.  We told Dr. C to give me something normal to suit me, and he did.  However, I still popped my 1/2 a Xanax and 1/2 a muscle relaxer, wrapped myself in my fashionable bandage and headed out to your lovely PRMA facility for the dreaded needle aspiration.  Now, as you all know by now, I'm a lightweight to medications.  Denise and Dr. C have seen me on a full Xanax and muscle relaxer,  and Denise fondly laughed today as she remembered how out of it I was previously.  So, today, I did 1/2 and 1/2.  Let me tell you, by the time I had reached PRMA and sat in the waiting room, it was all taking effect.  I was under the influence.

I love my nurse Denise, and I loved her even more today.  LOL!  I was in a happy place.  Nerves, nope, they were gone.  I think I fully entertained my husband in the doctor's room as well as your nursing staff just on the other side of the door.  I laughed, and laughed and laughed.  I laughed even though I was about to have needles in my breasts.  I laughed through the pain while Denise held my hand.  Today, I had the privilege of seeing Dr. Ledoux, another well respected PRMA surgeon.  That's one thing that is clearly evident within the PRMA practice...you all fully support and recommend each other.  I told Dr. C that I'm ok seeing Dr. L because I trusted Dr. C.  If he said I'll be in great hands, I knew I would be.  I'm pretty sure Denise warned Dr. L that I was on medication as he came in smiling and gave a little laugh, and then continued smiling throughout the procedure.  I only felt the tiny pin prick of a needle on each side, but hey, that means I have feeling in my breasts which makes me beyond happy.

My funny and comforting nurse, Denise.

Dr. C...a friend from the beginning till the end.

The fluid is now out, I'm back in a compression bra with pads added for extra pressure to the underside of the breast and that's that.  I'm done with my treatments.  But I don't want to be done, as strange as that sounds, as I absolutely fell in love with all of you at PRMA, especially Dr. Chrysopoulo, Denise and Courtney.  I don't want to leave San Antonio.  I believe we come into each other's lives for a reason.  There's a reason I found Dr. C in 2013, hoping for a 2014 surgery, and there's a bigger reason as to why I was drawn back to him in 2015 to finally complete my surgery.  People will know when they've found their surgeon, they just will.  And it's completely natural to form a bond with the people who help save your life.  You're forever connected at the heart.  I would love to bring my daughters back here come time for their surgeries, should they be BRCA+.  I trusted my life and I'd trust my daughters' lives to PRMA and Dr. C.  

Added my Previvor colors today...another milestone in my life.

                                     

So, it's with this 2 week anniversary post that I end my daily postings.  I'm good, I'm strong and I'm happy...I'm now boring.  I'll post if there's further updates to my healing process, I'll forever catch you guys on Twitter and Facebook and I'll send a shoutout whenever I can.  With as recovered as I am, there's just nothing newsworthy to share on this current journey as of now.  I'll never be able to thank you all enough, but I think in your hearts, you know just how much you touch every life who walks through your doors, including mine.

Up next, oophorectomy.  I wish you did those so that I'd have an excuse to fly back and see you all!

With my utmost love and respect,  

Heather

Day 13- Everyone Is Different

Well, the seroma isn't reabsorbing, so we're doing a needle aspiration tomorrow.  Simply put, a very fine needle will be inserted into each breast to remove the fluid which has gathered.  I tried to be the perfect patient, doing everything I was told (I didn't even have my first cocktail I asked if I could have due to guilt), but everyone is different when it comes to the healing body.  My body is choosing to take a different route to recovery, just how it is.

So, Xanax was recommended prior to the procedure tomorrow, as I'm already fearing that needle.  It's one thing to be completely knocked out for surgery, but being awake and seeing the needle go into my breast?  I told you I'm a wimp.  Anyway, I made my nurse promise she'd be with me every minute of the procedure tomorrow as she pretty much calms my anxiety.  Denise, I will get a photo with you and proudly display you on my blog before this is over!

So, please say a little prayer for my boobs and me tomorrow.

On an upside, we spent another wonderful day here in San Antonio.  If you come to PRMA, you will have such a wonderful area to explore while you're healing.  I still can't believe I've been in Texas for thirteen days already, tomorrow marking my two week anniversary.  We've lived in an Airbnb (best hosts EVER) and are now on our second hotel.  We wanted to keep things interesting during the stay.

Anyway, today we moved into a hotel on the Riverwalk and took the guided river cruise.  Y'all have so much history here!  I love this little hidden gem of San Antonio.  It's beautiful, relaxing and you make it as big or as little an adventure.  I chose to head back to the hotel after the cruise, as my body had enough.  My family continued on to the IMAX where they learned more about the Alamo.  As expats, my kids don't know much of American history, sadly.  We're trying to add in that educational element whenever we can.

You'll love San Antonio.  I'll have a complete list of things to do, places to stay and where to eat when I'm done here!  I'll share it all with you.

Day 12- Nothing to Tell...and That's Awesome

Man, that feels really good to say...there's nothing to tell you guys today!  

I had no muscle spasms, no nerve issues, no feeling fatigued nor sick.  I'm only on antibiotics and I only needed one muscle relaxer today.  I showered 100% on my own and only needed help getting a shirt on.  I'm still in the strap to try and help the seroma, but that's just part of the deal and I'm dealing with it (note clenched teeth smile).  I did ask one medical question regarding it, but that's all.  Other than that, nothing wrong with me that was worthy of a real blog post!  Today was just...a day.

So, what I can say, is if you come to San Antonio for surgery and need to entertain your kiddos, you need to go to the all new Do Seum (Children's Museum that reopened this June) where my children spent a whopping eight hours today!  They stayed until closing, getting nudged out ever so kindly by the staff.  There's plenty of indoor and outdoor activity to keep them busy, so busy that they didn't want to leave.