When She Turned 18: Her Choice, Her Journey

My oldest daughter turned 18 this year. And when she did, she asked for genetic testing.

I didn't push her toward it. She came to me and said she wanted to do it. She's grown up knowing my story. She's been there for appointments, surgeries, conversations about risk. She understands what BRCA means. And she wanted answers about her own genetic status.

She had already done 23andMe, but like many people, she wanted confirmation. 23andMe itself recommends verifying results with your doctor. For her, that mattered. She wanted concrete answers, not just a home test result sitting in her mind.

We were referred to my incredible gynecologist, Dr. Lucas Minig, who connected us with Dr. Vicente Guillem Porta at Unidad de Oncologia Medica for a genetic consultation. The process was straightforward. The doctors were kind, thorough, and genuinely good at what they do. They prescribed bloodwork, we went to the lab, and we waited.

The waiting felt long. Not in an anxious, soul-crushing way, but more like the "are we there yet?" feeling on a long car ride with kids. She just wanted her results back. She was ready to know.

And now she does. She has her answers. Concrete, confirmed results. And she feels good about that. There's something powerful about a young person taking charge of her own health, asking the questions that matter to her, and getting the clarity she needs to move forward.

That's what matters at 18. Having agency. Having answers. Knowing that whatever comes next, she's prepared to face it.

I highly recommend speaking to a geneticist before any testing takes place. My family has been around these conversations since they were itty bitty. We've had lots of talks. They knew what they wanted, and they knew the consequences of knowing. If your children haven't had this history, seeing a geneticist and speaking with one thoroughly is a must. Don't rush this process for them.

A Follow-Up Conversation: Six Years Later

Back in 2018, I did an interview with Grey Genetics about my BRCA1 journey, losing my mother to breast cancer at 13, and the preventive choices I made for my own life. That conversation was important. It helped me process my story and, I hope, gave other people walking a similar path some perspective on what it means to be a previvor.

Six years later, I sat down with them again for a follow-up. A lot has changed. My kids have grown from 10, 12, and 13 into young adults at 15, 17, and 19. And they all decided they wanted to do genetic testing through 23andMe.

This wasn't a decision I pushed them toward. They came to it themselves. Curious about science. About health. About understanding their own genetic predispositions. They know my story inside and out. They've been by my side through every appointment, every surgery, every conversation about risk and choice. We've always been open and honest about what BRCA means for our family.

But I want to be clear about something: I'm not sharing their results on this blog. That's their story to tell if and when they choose to.

What matters here is understanding why I won't share those results. The truth is, genetic testing outcomes carry real weight no matter which way they go. If a child tests positive for BRCA, suddenly they're facing the same decisions I faced at their age. The worry. The choices about surgery, about timing, about their future. They have to figure out what prevention looks like for them, just like I did. That's a lot to carry, and it's deeply personal.

But a negative result isn't simple either. I've seen the guilt that can come with it. The "why not me?" feeling when a sibling carries the mutation and you don't. Or the complicated relief mixed with worry for someone you love. And if results are different across siblings, there's this new dynamic to navigate. One child worried about their future, another relieved but maybe feeling guilty about that relief. It changes family conversations in ways that are hard to predict.

My kids understand all of this. They were prepared for whatever the results would be. But preparing for something and actually living with the outcome are two different things. Those are their feelings to process, their choice to share or not share. What I can tell you is that we're talking about it openly as a family, supporting each other, and taking it one day at a time.

The full conversation covers so much more than I can fit here. If you want to hear directly about this next chapter, the full interview is available on the Grey Genetics podcast.

You can listen here: Spotify or Grey Genetics website

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)

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 Other Man

I write this post mainly for the male supporters in our lives.  The ones who would do anything for us.  The ones who we love more than anything.  The ones we've dedicated the rest of our lives to.  The ones who are standing by your side through your diagnosis, your treatment and your recovery.  The ones who kiss us good morning and kiss us goodnight.  The ones who may not understand this new relationship with the "other man" in our lives right now, but who will hopefully sympathize with what we're going through, and later understand what it was all about. My husband falls into this category.  We might talk endlessly about this other man, sing his praises and confer with other women about him, and I want to help you know why we do it.

Women, by nature, have basic needs that need to be met.  We need to feel safe and secure, we want to know we are loved, we want to nurture, we want to be appreciated, we want to feel like we can count on someone and we want our feelings to be understood (even if you don't really understand).  We form relationships and bonds with others when these needs are met.  Women hold relationships near and dear to their hearts.  We protect our relationships.  Its natural.  Its why you are number one in her life right now.  You met her needs.  So what's going on with this other man she's talking about so much?  She's made a new friend, that's all. 

                                                 

When a woman goes through something life-threatening or life-changing, the people immediately involved in that experience become forever bonded at the heart.  For example, her doctor.  He becomes a hero in her life.  This can be any doctor in her life.  Her therapist, her OBGYN, her surgeon...you name it.  They see her through some of the hardest times in her life such as dealing with trauma, welcoming new life into the world or helping her go through the struggles of conceiving, or even performing life-saving surgeries.  This is a person who listens, sympathizes and shows concern for what she's going through, just like you do.  We, as women, tend to open up and talk to these people in our lives.  We love to talk.  And part of a doctor's job is to listen.  We like that too; we value that.  So its completely natural that her doctor becomes an important person in her life with whom she connects and holds dear.

I recently read an article that I can't get out of my mind called, "It is OK for the doctor to cry."  I was so touched by the story as it was so refreshing to hear the other side of the doctor-patient relationship, from a doctor's perspective.  It's not often you hear this, nor find it.  It's actually quite rare in my experience.  Early on the author recounts a moment with one of her patients:

She begins to weep into her husband’s chest but somehow manages to thank me for taking care of her for the past week and being “one of her nicest doctors.”  She even stands up to hug me.  I leave the room really quickly with tears forming and sneak into the bathroom as I begin to cry.

This doctor is humanized.  The doctor met the emotional needs of her patient, and a bond was formed.  The articles goes on to describe the compassion a doctor forms for her patient, and how she sees her patient as something more than a medical file number.  Her patients are mothers, fathers, sisters, brothers and more.  This is how I felt.  The author ends by saying:

Yes, we should distance ourselves emotionally if it affects our medical decision-making but when it boils down to patient care, feeling for a patient and his or her family makes medicine humanistic and real.

My journey was all about forming relationships.  I "read" people quite quickly, and I make decisions based on connections and my heart.  I know when I don't feel good about a person, or when we're not a good fit.  I made judgements based on comments doctors made in social media, on reviews left by other patients, by how the front office handled my calls requesting information and by how I connected with the doctor (IF I was allowed to actually talk to the doctor).  I needed what the article said, "make medicine humanistic and real."  If my needs weren't met, you weren't going to touch me with a knife.  My husband knew I had made my choice in surgeons a long time before we actually Skyped with my surgeon, as I had a good gut feeling from the PRMA patient liaison, Courtney, with whom I had been working. I couldn't stop talking about PRMA and Courtney.  Everything was, "Courtney said...", or "Courtney's so nice" or "Courtney is probably so sick of me...".  

 My needs, however, were eventually met with my chosen surgeon, Dr. Chrysopoulo.  He was real.  He IS real.  He provided assurance early on that built my trust. Throughout the process, he made comments that personalized the experience like, "if it was my wife...," or "you're the love of his [my husband] life and mother of his kids. Doesn't matter how positive you are...all bets are off [referring to my husband's biggest fear being that they'd find cancer when operating, but hiding it from me till all was said and done]."  My doctor cared about us as a family.  He took the time to ask my husband how he was really doing, husband to husband, after the surgery.  I kept telling my surgeon that I trusted him because he had taken the time to build the trust.  During my in-person consultation, he'd ask me if I wanted A or B, and I'd reply telling him I trusted his opinion and left him with the ultimate decision.  He had been welcomed into the 'circle of trust.'  He humanized the experience, just as the doctor said in the article.  In return, my husband listened to a lot of, "but Dr. C said.." or "according to Dr. C...".  I get it.  I talked a lot about my doctor, still do.  And Denise...oh Denise.  She's my nurse, and she's wonderful.  Up until my last day in the USA, I kept referring to Denise like she was my BFF and my husband would laugh.  She captured my heart too.

                                               

In a recent article, I spoke about the power of social media.  My doctor is wonderfully involved in it.  It's fun to see him interacting with people, patients, strangers and other doctors.  It's more fun to see how many other women are out there speaking highly of him, you're proud that you chose someone so revered.  I've become friends with some of his patients, like Terri, who also formed a relationship with him.  She spreads the word about how wonderful he is as well, like a personal cheerleader.  We love what he's done for us, plain and simple.  He's a doctor, he's brilliant at what he does and he cares for his patients.  We've gone through a very emotional time together, so of course we're all connected by that 'something common' between us.  I was talking to a friend from home this morning about my experience and how I was going to write this blog post.  She replied with, "it is such a unique relationship and situation." She totally understood and felt that I should write this to help other men understand what is happening.

My husband gets it now.  He said today, "I totally get (and support) the bond that you have. He essentially saved your life, and those words went through my mind weeks ago."  I know it must be hard to have your significant other speak so highly of someone else so often.  I don't think I'd like my husband coming home from his appointments speaking about his amazing female doctor and how supported he feels by her!  Not fair of me, I know.  But in the end, we're all friends now.  We can all chat like we've known each other forever, and we're all connected via Twitter and Facebook as well.  In the end, just consider your significant other's doctor, with whom you've all shared a major life experience with, as another friend to add to your circle.  At least that's my hope.  I hope you have a doctor who humanizes your experience.  However, I don't think my husband and I will ever be able to call him by his first name...he'll always be Dr. C to us.

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

Telling the Kids

I don’t think I ever had a set date or location for where and when I’d tell the kids about my upcoming surgery, but I guess I didn’t think I’d tell them with still 10 weeks to go.  Perhaps a little closer to the date so they didn’t have to think about it for so long, but I didn’t get to choose it, it chose me.  Last night, my eight year old heard me mention to my husband that I’d be in the hospital for two nights.

“Mommy, why are you going to be in the hospital?” 

Then and there I was on the spot, and quite frankly, a little relieved.  We were finally going to have the talk and I didn’t have to keep sheltering them from the inevitable.  The TV turned off, the kids gathered around and I began to tell them a story of sorts.

“As you know, there’s all different types of cancers people can get,” I began.

I told them about brain, skin and lung cancers as examples, and then told them that women, and some men, can get cancer in their boobs too.  The look on their faces was priceless, to me, as I realized my six, eight and ten year olds and I don’t often discuss boobs in our house in everyday conversations.  We then discussed how some cancers are very mean and others have good results with treatment.

“Well, mommy’s mommy had cancer and the doctors couldn’t save her no matter what they tried,” I continued.

“Mommy, can you catch cancer?” my six-year old asked with her hand raised high.

“Nope, you can’t catch it,” I replied with a bit of a smirk, realizing how over her head this all might be.

“The doctors couldn’t save my mommy, but luckily, as I was getting older, doctors were working on a very important test.  The test could tell them if I was likely to get cancer or not.”  My kids’ faces all lit up.  They were intrigued by this test and amazed it could tell doctors whether or not I’d get cancer.  “The test looks at your genes, and mommy happens to have genes that don’t work right.  That means my body won’t fight cancer very well if I get it.” 

I can’t clearly remember who asked it or the exact words, but one of my children asked flat out if I have cancer and if I’m going to die.  Ugh, gut wrenching.  I could see the faces changing as I told different parts of the story to my kids.  Eyes light up, then tears well up, then confusion and so on.  It was like a roller coaster of feelings happening as they were all trying to make sense of it.  “That’s where all of this is very exciting.  Because I took the test, the doctors can now try to save me before I get cancer.   You know how people can get hips and knees replaced and even get legs and arms made for ones that don’t work or they don’t have?  Doctors can do that with boobs too.  Mommy is getting new boobs.”

Property of Heather Barnard

“You mean you’re going to have metal boobs like the people with metal legs?” my ten-year old son unsuringly laughed.  Everyone kind of giggled then, and it was a much-needed break in what was a serious moment.

“No, they won’t be metal.  They’ll look the same on the outside, but they are going to take away all my yucky inside parts that could make me sick, and give me new insides that won’t make me sick.” 

My husband then chimed in with, “mommy has been wanting this surgery for a long, long time, and now she finally gets to do it.”

“You’ve been WANTING the surgery?” my son asked.

“Mommy lost her mommy when she was only three years older than you, 13.  I don’t want you guys to lose your mommy like I lost mine.”  Those were the hardest words to say of the entire conversation. 

I then explained why were going to Texas, why grandma was coming to stay with us for a week and why I’d be in the hospital for two days.  We talked about what they’d see at the hospital when I came out of surgery, how mommy might talk funny due to the medications, how they couldn’t come jump on my bed and give me bear hugs for some time and what the drains might look like.  My youngest then gave a demonstration of how they could hug me ever so gently. 

“We want you to come to the hospital to see that mommy is ok after the surgery,” I continued.  All three resoundingly agreed that they wanted to be there after and see me, see that everything is ok. 

I feel I was so far removed some portions of my own mother’s process that I never got to ask questions I had.  I even wrote a children’s book all about what kids want to ask but don’t out of simply not understanding or being scared, because of what I went through as a child.  I’m glad we had the talk when we did and I’m glad they’ll be there with me through it all.  Now we can all just look forward to the day we can celebrate mom’s recovery.

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.