When Dad Undergoes BRCA Testing

* UPDATE: I am negative for the BRCA gene.

Breast Cancer Awareness Month means a great deal in our house. It’s not just another reason to re-post something on Social Media and forget about it. Here’s why. 

My wife, Heather, lost her Mother to cancer. Susan was 41, and Heather was only 13. Heather’s grandmother also had cancer in her lifetime, and if you’ve read Heather’s blog and social media posts, you’ll know about the elective, preventive measures she’s taken to reduce her risk. She has also written two children’s books based off the conversations we’ve had with our own kids. The goal is to help other kids who might be going through the same issues and having the same questions. 

I’m so proud of the active stance Heather takes related to matters relating to breast cancer. She gets herself out there and tries to help who she can by sharing her story. She uses social media, blogs, shows up as a guest on podcasts and video interviews. She really walks the talk. So, what can I do to show my support this October? Well, I decided to get tested myself. After all, my paternal grandmother died of cancer, and both my father and his only brother have dealt with prostate cancer themselves. So today, I spit in a test tube and my doctor will ship my DNA off for testing for BRCA1 and BRCA2. 

Genetic testing isn’t new to our family. Heather was tested for the BRCA mutation years ago as was her Grandmother while she was still alive. Fast forward to last year, I myself was tested (via 23andMe) in search for explanations regarding my own health. I learned a few things related to my own health, such as a genetic variant in the MTHFR gene which won’t allow my body to process folic acid the same way “normal” people do. But I digress. 

This isn’t just a test for how my body metabolizes a B Vitamin. We’re talking about looking for a predisposition to deadly disease. I must admit that I’m a little nervous. However, I’ve always preferred knowing. I’m the guy who would rather people be honest and upfront with me now, even if potentially difficult to accept, to avoid hurt feelings later. I’d rather know, and as the G.I. Joe series told me when I was a kid, “Knowing is half the battle!” Go Joe.

Oddly, the anxiety I have is from what the results means to those around me. My wife has already been through so much. Because she’s positive for the BRCA1 mutation, she already worries about the 50% chance each of our kids carries that same mutation. What happens if I, too, have that mutation?  What about any of the other 30 genes that for which Colors tests? I really don’t want her to stress even more, but I also know she’s happy she found out. And of course, we’ve discussed this, so I’m confident she’ll be okay.

What about telling my kids? Yes, I want to know, but do I share my results with our children? They already have some burden knowing that they have increased risk. At 10, 12 and 14 years old, are they ready for the additional weight on their little shoulders of knowing there could be others? We’ve asked about BRCA and whether they would want to know, and when. Two of them want to know. One, the youngest, doesn’t want to know her own results. The good news is that they are all willing to talk about it. At least we’re talking about it.

Then there’s my only sibling; my brother. Obviously he potentially carries any mutation or variant that I carry since it would have been passed from one of our parents, and he also has three kids of his own. The weight of this decision spreads across the branches of the family tree. 

Lastly, something my wife hasn’t experienced herself as her parents died many years before genetic testing was available; the guilt my parents could carry from knowing it’s passed from them. Not that they should feel guilty, of course. It’s nobody’s fault. If we worry about passing on “broken” genes we’ll stop populating Earth altogether. Probably not a good choice. However, I already know that it’s difficult to know that my son has the same MTHFR variant as me, and I can’t help but feel some responsibility. 

Occasionally this Winston Churchill quote surfaces;

“The truth is incontrovertible. Malice may attack it, ignorance may deride it, but in the end, there it is.”  

It means we can’t deny truth, whether we choose to know it or not. Facts don’t discriminate. Sometimes we fool ourselves into thinking ignorance is bliss, but the fact is that ignorance can harm, or even kill us. 

Truth empowers us. It allows us to take meaningful action, even if at first it hurts.

Heather and I made the decision to KNOW all those years ago so that she could do everything in her power to live a long  life with our kids, something her mom and dad were denied. I’m sure that they would have done exactly what Heather has done; they would have taken every measure available to them to extend their own lives. It goes without saying that Heather wants to be there for every graduation ceremony, wedding, and someday the birth of our grandchildren. So do I. And if I can be given information on how to increase those odds, I’m game. 

Another important thing for me, and my advice to anybody making these choices, is to seek genetic counseling. As I read the Color Genomics consent form this morning (I know, who ACTUALLY reads those?), I noted that they offer genetic counseling at no extra cost. This is a huge bonus in my opinion. My doctor provides great counsel in the context of how we can use it to holistically address my health, but I will absolutely contact Color and take advantage of that genetic counseling service. Our BRCA journey started with an amazing team of counselors and physicians from Huntsman Cancer Institute in Salt Lake City, Utah. The team there, over 13 years ago now, set the stage for taking an informed approach to all we do. They helped us navigate considerations that we hadn’t thought about. These thought provoking discussions have helped us better manage our own expectations and those of our loved ones. 

So for now I’ll wait for my results and consider these questions with my wife. Until then, I’ll be satisfied that “knowing” is in my future, and for me, knowing is half the battle. 

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

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

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

Grandma, It's Going To Be OK

In a 1991 LA Times article, my grandmother was interviewed about breast cancer in our family.  She sadly passed of heart surgery complications in 2006, right after the birth of my second child.  The two quotes that stick with me from the article are the following:

"I thought I was helping my daughter do all the things that were necessary. And she followed all the rules. What is frustrating is that the results from treatment now are not a heck of a lot better than they were when I had cancer. I am watching her two daughters, ages 22 and 14. I'm hoping the outlook will be better for them, but I'm not sure it will. Twenty-five years after my cancer, why should I still be worried about my granddaughters?" 

And in speaking about my mother...

"At one point, she asked her doctor if she could undergo a prophylactic mastectomy--a procedure where the breast tissue is removed and replaced with implants to lessen cancer risk. She was discouraged from taking that radical step." 

LA Times

I would LOVE to be able to sit face to face with my grandmother right now and show her just how far results from treatment have come since she and my own mother were fighting the disease.  I've gone from a 14 year old to 38 year old and I've been given a wonderful outlook on life with my own children.  I was able to get the BRCA genetic test thanks to my grandmother taking the test months before me, and as a result, I qualified for a prophylactic double mastectomy, no questions asked.  


You don't have to worry anymore grandma.  I've been taken care of by the best. 

My Grandmother

My Mother

Me

Emotions: At Risk

  24 years ago today, my mother passed away from breast cancer.  Today, I’m sitting here in my home, alone.  No kids to tend to, no husband to talk to.  Just me.  Well, just the dog and me.  I’m not going to work, I’m not taking care of anyone else, and I’m going to try and deal with some emotions I apparently need to get out.  I haven’t done this in a very long time.  I always go to work, I always push through the day, I always keep it inside.  But when you start cracking in public, breaking down your wall when friends ask you simple questions, you know you need a break. 

“We all need a daily check up from the neck up to avoid stinkin thinkin which ultimately leads to hardening of the attitudes.” –Zig Ziglar

  When I need to get things out, I write.  I’ve always been a writer at heart.  I loved making story books as a kid, I took as many elective courses in writing as I could throughout college, and I’ve always been able to write my feelings down on paper better than I could ever say in words.  I don’t think writing is a bad thing, I think it’s actually quite therapeutic.  But when writing is all you know how to do when it comes to expressing yourself, I begin to see the problem.  I don’t cry when I write.  I don’t get hugs of support when I write.  I don’t get feedback when I write.  I don't even get eye contact when I write.  I put it all out there, on paper or on the Internet, in hopes of getting it off my chest, helping someone else and moving on with my life.

  I’m home today because I was told, just yesterday, that I need to cry.  Not a tear here and there, but a full on cry.  A bawling your eyes out, mad at the world, scream in a pillow cry.  A cry for my mother.  A cry for my father.  A cry for BRCA.  A cry for a list so long that it hurts…but I stay strong.  I cry when moving away from friends and family, I well up with tears when I see my children hurt and I quietly shed tears in sad movies, wiping them away in secrecy.  But I hardly ever cry for my thoughts, my experiences and my memories…myself. 

  Over the many years of sickness my parents went through while I was quite young I can’t remember someone telling me to just cry.  Of course I cried in my bedroom, or at a friend’s house or with a teacher at school when any of them asked my about my mom or dad, but I didn’t cry with my own family.  Instead, I remember family asking me if I was “o.k.”  At that age, I didn’t know what o.k. meant, so I just said yes.  I’m not the one sick.  I’m not the one in the hospital.  I’m not the one dying.  So of course I’m ok.  I stayed strong because I thought that was what I was supposed to do for everyone else.  For my mom.  For my dad.  I stayed strong because it was my mom and dad who were not ok…not me.  I didn’t cry for fear of making someone else cry and be more upset.  Turns out, this was called avoidance and little did I know, I’d later be ridiculed and slandered by some of my own family members for NOT handling death appropriately at the ages of 13 and 17.  So, today, I may or may not cry, it’s yet to be seen, but I’m going to let it all out...right here. 

  Today, for the first time, I’m realizing where so much of my recent pain and sadness are coming from.  After the passing of my mom, I have had years of worry, agony and constant reminders of death right on my chest.  I’ve always had a love/hate relationship with my breasts. But mostly hate.  I’m sitting here today, home and alone, reflecting on my mother and all she went through.  I’m thinking of how scared she was.   How unfair it all was.  I'm thinking of her and how on Earth she was dealing with the thought of not watching us grow up.  How I wish she had today’s opportunities back then.  My mother actually asked for a prophylactic double mastectomy back then…but it was deemed “too radical” by doctors.  My grandmother was quoted in an LA Times article written in 1991 saying;

"I thought I was helping my daughter do all the things that were necessary. And she followed all the rules. What is frustrating is that the results from treatment now are not a heck of a lot better than they were when I had cancer. I am watching her two daughters, ages 22 and 14. I'm hoping the outlook will be better for them, but I'm not sure it will. Twenty-five years after my cancer, why should I still be worried about my granddaughters?" 

LA Times

 

I’m now, at 38, preparing to save my own life, and it’s all just too real.  My mother was 40 when she was diagnosed, my grandmother was 40 when she had her double mastectomy, and here I am, 38, trying to beat a family curse by two years.  Of course today is especially hard.  I’m wishing my mom had the same fighting chance I’m being given and am preparing for, and it’s taking me on an emotional roller coaster.

  I decided to take control of my life and hopefully, stop the worry back in 2005, just after having my son.  I was going to have the BRCA genetic test at Huntsman Cancer Institute in Utah.   I had heard mumblings about it here and there, but it was nowhere near as talked about as it is now.  This was years before Angelina Jolie…and I’m thankful someone like her could use her platform and get the message out to the masses today.  I thought long and hard about getting the test, even meeting with a genetics counselor and a surgeon, Dr. Saundra Buys, at Huntsman who helped guide my husband and me through the process and come to terms with what the results of the test could do to my family and me…emotionally.  I remember the series of questions that hurt the most and made me well up with tears…”You have a beautiful boy now.  Are you done having children?  What if the next one is a girl?”  You see, each of my children now has a 50% chance of getting my BRCA gene.  Those questions were the most in your face, hardest questions I’ve ever have had to answer, and probably ever will.  For me, I had seen how far options had come along to help myself, and I had faith that there’d be even more options for them as they grew up. 

  I had the test, and tested positive for the BRCA1 gene (Breast Cancer), as did my grandmother, who took the test first which helped open the doors to a cheaper test for me.  On average, if you took a random sampling, about one in 400 would carry a BRCA mutation.  Testing positive, and having a long line of breast cancers in my family, meant that I had a 65-87% chance of developing breast cancer over my lifetime, that’s hard to swallow.  Why the large spread?  Depending on the doctor and the comparison group used, I got the answer of 65% risk as compared to large average population sample, to 87% because of my very strong family history being compared to other very strong history family cases.  I was not surprised by the results as I think I always knew, but it doesn’t mean I wasn’t mad either.  I also learned that with a BRCA diagnosis, IF I were to ever get cancer, doctors would fight aggressively, as the genetic mutation makes it very difficult for my body to fight cancer. But we’re not done there!  Thanks to this BRCA gene, I now increased my risk for ovarian cancer!  What?  This whole time I’ve been focused on my ticking time bomb breasts, and now I have to worry about my ovaries? I was angry-mad.  I did the “why me” for a while…still do on occasion.  But I also knew that having the results would somehow help me with the “next step”…whatever that was at that time. I wanted more children and I wanted to breast feed, so immediate surgery, breast or ovary, was not in the cards for me.

  At the age of 28, I was beginning mammograms and ultrasounds, every 6 months.  This was a hard time for me, as I couldn’t have anything done while pregnant or nursing, so my scans were few and far between for the next 4 years.  During that time, I kept wondering…am I developing cancer and don’t know it?  Am I going to have to go through what my mother went through?  Once I had my youngest, and I knew I was done having children, my regular 6-month screens began.  I was being steadily proactive and that was going to ease my mind, right?  Wrong. 

  I’d go in for mammograms, holding my breath both for the scan and for the results, every 6 months.  The MRIs were worse.  First I had to face my fear of needles, a fear that began from an overnight stay with my mom in the hospital.  Then, the banging, clanging God-awful noises that came out of that machine, no matter how loud the music in my headphones, lead to an incomplete MRI and me to having my first panic attack in the Fall of 2013.  30 minutes of the 45-minute procedure…wasted.  What was I doing?  I felt like a hamster on a wheel, jumping from the mammogram wheel to the MRI wheel and driving my self completely crazy twice a year.  And what were these scans doing to me overall?  Surely living my life like this couldn’t be healthy.

  November 2014 turned out to be the turning point for me.  I went in for another routine mammogram, on Thanksgiving Day.  The same day my youngest was having a tonsillectomy and adenoidectomy.  I had prayers flying out left and right that day.  My husband took my daughter to the hospital to get her settled in for surgery (he’s the strong one), while I took the older kids with me to get my mammogram.  Everything was supposed to be normal, another mammogram, in and out.  But this time, I went in, came out and went back in.  I had never been called back into the mammogram room…ever.  My heart raced, tears came to my eyes, and I was texting my husband ferociously while holding back the utter panic welling up inside me.  Once again, I couldn’t let those around me see me cry.  Once again, I held it all back in order to be strong for my own kids.  Not because anyone told me to hold it together, but because its what I was used to doing.  Because it was just...me.  So, another few squeezes of the machine and I was dismissed with a follow up appointment that night at 5pm.  That night?  When have I ever had results immediately read and met with the doctor on the same day?  NEVER. 

  This was it.  This was when it was happening.  This was the day that would change my life forever.  I left the building with all of my worst nightmares coming true in my mind.  I was in a haze of fear while traveling in the taxi from my hospital to my daughter’s hospital.  I remember texting my BFFs on the way, not for them to panic with me, but to just let someone know I was scared.  Luckily, I made it to the hospital just in time, as my daughter was just released from surgery and moving into recovery.  I put on the scrubs, went into the OR recovery area, and held my little one’s hand.  Everything disappeared at that moment.  I was completely in the moment as I listened to my groggy daughter talk through the anesthesia.  I was completely there…for her.  And I was thankful.  I was thankful for her surgery that would help her live a better life.  I was thankful for the chance to be her mother.  Sure, I knew I had an appointment later that night and I was scared, but I kept it all inside.  I didn’t even have time to talk to my husband about it all as we were so focused on the kids for the next few hours at the hospital.  As my daughter recovered from surgery and my husband left with the three kids in a taxi heading home, I made my way to the doctor’s office, one I'd never met. 

  Behind the desk sat a cold, expressionless doctor.  The room was small, tiny actually.  She fluttered with papers from her appointment before me, opened a new, empty folder, grabbed a pen and looked at me.  “So, tell me why you’re here.”  I’m sorry, did you not read the report from the mammogram I just had?  I must have said something to that effect in my out loud voice, as she opened another file and simply stated, ”Looks like you have a cyst.  It’s nothing to be concerned about.  You’ll come back in 4 months to check on it.”  Really?  That’s how we’re leaving it?  You’re summing up my last five hours of panic into that?  I don’t want to “check on it” after 4 months!  What is it?  What are we going to do?  Where’s that preventative prophylactic mastectomy option?  Again, I must have uttered words close to these as she then pulled out her iPad and all of her research she’s presented.  Basically, what I got from her lecture was that she’s not a believer in the procedure and IF I do get cancer, we’ll do a lumpectomy and figure out a course of treatment from there.  OH.  MY.  GOSH!  Get me out of here…now!  I found another doctor, Dr. Tucker, by referral and scheduled an appointment with him a few days later.  Thankfully, he became the voice of reason, the voice I needed and the voice I listened to.  He knew I didn’t want to even GET cancer.  He knew that I couldn’t handle hospitals.  He knew I had seen the effects of harsh cancer treatments first hand and how badly I didn’t want to ever experience them.  And he knew I never wanted to leave my beautiful children because of cancer.  Dr. Tucker knew.

  In a matter of weeks, I was in overdrive mode.  Friends who know me well just call it “Heather mode.”  I’m an information gatherer.  I’m a planner.  I’m an organizer.  I have been consuming my free time with nothing but surgery related tasks.  I’ve been researching doctors in the US, talking to women from my online forum about their doctors and results and getting as much information as I could about which type of surgery I wanted.  Implants?  Stomach tissue?  Keep my nipples?  Tattoos?  I haven’t even stopped to really process it all.  I just keep moving forward.  I’m doing it.  This is it.  10 years later, from my initial BRCA1 diagnosis, I am going to do something about it.  I’m making a choice to take my risk from 87% to 1-5%...that’s a big deal.  And my future has now fallen into the hands of Dr. Chrysopoulo in San Antonio.

  The hardest part of the process has been trying to figure out how I’m supposed to feel.  That doesn’t even make sense, right?  One day I feel like I want a “goodbye to these ticking time bombs party” with my friends, celebrating my chance at never getting cancer, and the next day my eyes are welling up, wondering why I have to go through all of this at all.  One day I’m sharing information with friends in a casual conversation and the next day I’m crying at the slight mention of the impending surgery.  I imagine this will continue, long after my surgery.  You see, I get told all the time, “at least you’ll get awesome boobs out of all of this!”  I’ll be the first to admit that those words come out of my mouth too, but I think I use them in avoidance of not talking about what we’re really talking about.  I mask my emotions pretty well, much of the time.  Remember the no crying thing?  My husband knows not to joke about me having a “boob job”, he takes my lead on the conversations and my mood at the time.  If I have a moment of “it might be nice having perky breasts again,” my husband follows with supportive comments.  But then I follow with a moment of me punishing myself for being so insensitive the real situation and how dare I joke about something so serious.  But it’s my life to comment on, my emotions, my feelings towards my breasts.  But I’m not having a boob job!  I’m having breast reconstruction.  Wait, I’m having a mastectomy and breast reconstruction.  Nowhere in any document I’ve read has it said “Congratulations!  You get a free boob job because you're BRCA+!”  I’m not going into the details of the differences between breast reconstruction and breast augmentation, nor am I diminishing the fact that both involve surgery, but if you’re curious about the differences, please Google it.  They are very different roads traveled. 

  Yes, I will be proud that I’ve taken this drastic step towards saving my life and being around for my children.  Yes, I’ll try my best to embrace my new breasts and be proud of those, too.  And yes, I’ll wish that my mother could have had the same opportunity that I’m about to get.  No, my breasts won’t be the same, hell, I probably won’t be able to even feel them anymore, but they’ll be mine to live with.  They won’t be perfect either, and I’ll probably always find faults that no one else sees, but they’ll be mine.  I’ll have a constant reminder, again on my chest, but hopefully I’ll have taken all the fear away...the ticking time bombs will have been detonated.  Hopefully I’ll be able to see them as the new me, the healthier me. 

  So there you have it.  24 years ago today my mother passed away from breast cancer.  I’m home today to try and reconcile some emotions I’ve had bottled up.  I’ve taken the time to examine the path I’ve traveled, the ups and downs, the curve balls and the road ahead.  I realize that there is no right way to react to some of life’s hardest events.  There’s no perfect way to handle the topic of breast cancer.  Everyone is going to have a different perspective, based on his or her own life experiences.  My view on my surgery and my outcome may be very different to someone else’s, and that’s ok.  I just might have that “goodbye to these ticking time bombs” party…and that’s ok.  I guarantee I will document and share the entire surgical and recovery process as well, because it’s a way for me to talk, a way to share, a way to deal with my emotions.  For me, writing is my crying for now.  Some day I might begin to really weep as my friend wanted me to today.  Maybe when this is all over, I’ll sob like a baby, thankful that its over…for now.