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.

5 1/2 Weeks

5 ½ weeks till surgery?  Nope.

5 ½ weeks recovery time from surgery?  Nope.

5 ½ is what it took to get insurance approval for a prophylactic double mastectomy with immediate reconstruction.  I read a lot of blogs, I ask a lot of questions, but never in my reading did I learn how long it could take to get insurance approval.  No one seemed to talk about the window of time between finding a doctor and getting a surgery date.  Don’t get me wrong, I'm so thankful for the opportunity to even have insurance to proceed with this surgery in the first place, but I just wasn't prepared for how my psyche would be affected by the wait time.  Waiting for the email stating, "you're approved" drove me insane.  

Naïvely, I thought my virtual consult with my doctor in February would mean I had a date on the calendar for June, in pen, and insurance would naturally say “Yes!” immediately.  My emotions were flying all over the place while I waited.  Remember, I started this current journey in November, when I had an abnormal mammogram for the first time.  Since November, I have been in overdrive, wanting everything to be planned and set in stone as quickly as possible.  I like plans.  That’s my personality.  You want something done?  I do it right away.  You want something planned; I’ll get it planned quickly and efficiently.  But everything was moving so much slower than I ever anticipated, I wasn't the one in control and my mind didn’t know how to cope with not being in control.

Once again, however, I give thanks to my choice in PRMA.  Every time I wrote in to ask if insurance had yet approved, they replied in the best way they could, “you’ll be the first to know.”  I believed them, but I was also anxious.  I wrote a lot.  I knew in my mind that they really would tell me straight away as soon as they had news, but I needed to ask just feel somewhat proactive.  I can’t imagine what it’s like to be the sounding board for so many women all counting on you to provide the answers they can’t receive on their own.  Women, like me, who are so consumed with the idea of saving their lives that nothing else seems to matter.  

I noticed I wasn't as focused and on top of things as normal.  My work was becoming affected as my emotions were on a roller coaster.  I was on the verge of tears for weeks, as I had all the “what ifs” rolling through my mind.  “What if they say no…what will I do?”  That’s a really hard one to deal with.  I had taken the gigantic leap to get genetically tested, I found out I’m positive, I'd done my due diligence to finally find the perfect doctor, I'd requested weeks off work and now, after all that, what if I can’t do anything about it.  What if insurance says no.

I also had a lot to plan and set in place when it came to my family.  We live overseas and are flying to the States for all of this to happen.  My husband and I both work full time.  We have three children and a dog.  Jobs, flights, dog care, childcare, hotels, etc all neded to be planned and I couldn't do any of it until I had dates.  I felt like I was keeping everyone hanging as I had no answers.

Luckily, after 5 ½ weeks of agonizing waiting, I finally received the news that I was approved for the surgery that I set out to get, really, back in 2005.  I can’t begin to express the feeling that came over my body at the moment I received the news and my husband high-fived me.  He was on the phone with insurance confirming everything and gave me that smile that let me know everything was going to be ok.  I knew I was on my way to healing.

I think I would have been a little better off had I known that insurance approval could take this long.  Had I known from the beginning of my surgical search, I wouldn't have set false expectations in my timeline.  This is why I felt this journal entry was important, hoping someone else going through this could be informed about the insurance wait.

Questions I often get from others wanting to go down my path involve insurance and the steps I took.  Based on my experience and what I’ve been through, this is what I am able to come up with to hopefully shed a little light on insurance and BRCA.

Genetic Testing:

I'd heard that the cost of getting a BRCA genetic test could range in the thousands of dollars, dollars I didn’t have. I was, however, delighted to learn that my test could be cheaper if I could find a first-degree relative who tested positive.  Since my mother was no longer alive, my grandmother, a breast cancer survivor, was able to get her insurance to cover the genetic test, and her positive result meant that my test came out somewhere between $300-$500.  I believe that if this isn’t an option, out of pocket costs really are quite high, into the thousands.

Mammograms/MRI/Ultrasounds:

Somewhere during the time of my genetic test, having babies and putting off mammograms for a while, a law was passed that meant I couldn’t be denied insurance and be labeled a pre-existing condition.  I still don’t fully understand how this works, but I do know that I’ve had several different insurance policies since 2005 and we’ve never had a problem being covered for anything, in States and overseas.  When it was time for me to begin getting the routine mammograms, everything was covered because I was BRCA+ (high risk.)  Even now, all of my doctors write the orders for the scans as “BRCA+ high family risk.”

          Here’s what I found to best explain it all-

“Under the Affordable Care Act, most health plans must make genetic counseling and testing available without any out-of-pocket cost to women whose family history indicates they have a higher-than-average risk of mutations in the BRCA1 or BRCA2 genes. The federal health law's prevention coverage requirements are based on recommendations by the U.S. Preventive Services Task Force. It's the only preventive genetic test the organization endorses.” - http://www.npr.org/blogs/health/2013/12/09/249782554/dont-count-on-insurance-to-pay-for-genetic-tests

By Careilly5801 (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

Other Appointments:

There's a lot of appointments involved in all of this.  Be well informed ahead of time so that you can prepare of how this might financially impact you.  It wasn’t just the genetics counselor appointment in the very beginning that I had, it was then the referral to the oncologist to talk about surgical options. It was then the appointments with the gynecologist to do ultrasounds on my ovaries (much like my yearly mammograms for my breasts).  There's the blood panels taken to check my indicators for ovarian cancer, the numerous MRIs and mammograms and then the plastic surgery consultations.  Again, my insurance has been there for me each and every time, covering the costs…perhaps only a copay with some of the plans I was on at the time.

I'm hoping that every woman gets the chance to have the BRCA genetic test IF she wants it.  As I mentioned in my first post, getting the test was going to quite possibly change my life forever and I had to live with the results.  I had to prepare myself for what my options would be and what I'd be capable of doing.  I have many people tell me, since coming public, that they aren't ready for the test and don't know if they ever will be.  That's ok.  I'm still here for them.  It's all so very personal and now one can make the choice for another.

So Many Choices

  I remember sitting in the genetic counselor’s office at Huntsman Cancer Institute, back in 2005, and waiting for the surgeon, Dr. Saundra Buys, to arrive.  The counselor and surgeon were going to explain my surgical options and help me decide on the best option.  I’m pretty sure I was overwhelmed with the topic at the time, as most of it is a blur.  However, what I do remember most clearly was the surgeon telling me I could essentially have what I call a “free” tummy tuck if I chose one certain procedure called the DIEP.  At the time, I was carrying a lot of post baby weight and thought it would be a great option for me!  Flat tummy, new boobs and cancer free!  Could it get any better?  I was 28...I wanted to live without fear.  I didn’t care how I got there, I just wanted it done.  But then I remember the conversation turning to nipple sparing options, implants or tissue, and I think I started to become glazed over with too much information, and too many details.  Too many decisions meant it became too complicated for me, which means they lost me at the word nipple.  I loved Dr. Buys, still do.  She is so warm and caring and she really wanted me to take my time and think about the whole package.  Well, after all that, surgery never happened that year as I became pregnant and knew that with growing my family, there was never going to be a “right time” for me anytime soon.

  Fast forward to January 2014.  I, once again, began the process of researching surgical options as I was going to head home for the summer from the UAE and have surgery.  I scoured the Internet for advice, I contacted Huntsman again, I asked questions, and most importantly, I came across a wonderful group of Pink Lovelies, a closed Facebook group called Beyond the Pink Moon, who have become my sounding board and educated me beyond belief.  I was dead set on a nipple sparing, immediate reconstruction with direct to implant as an option (which Huntsman didn't do).  There was no convincing me another way.  It seemed the easiest and best option for me given my time constraints of overseas travel.  I even went as far as contacting a recommended surgeon’s office in a State other than my own, Dr.Chrysopoulo, to discuss timing and options.  Well, that never happened either.  Again, it wasn’t the “right time” as we were being relocated from the UAE to Singapore that summer.  With too much on my plate and not enough time, I gave up my decision to have surgery that summer.

  Now, 2015, I have once again, started the process.  THIS TIME WILL BE IT!  After having my first “abnormal” mammogram in November of 2014, I made it my mission to never be afraid again.  In the back of my mind, something was calling me to stick with Dr. Chrysopoulo’s office as I just had a good gut feeling about them.  They were friendly and quick to respond to every thing.  However, I needed to do my due diligence, so I started talking to my Pink Lovelies on Beyond the Pink Moon as well as to a doctor here in Singapore, Dr. Steven Tucker.  I gathered referrals to everyone’s favorite surgical teams in the USA and started contacting offices.  I had no idea that living overseas and planning a surgery like this would be so hard…lodging, child care, flights, timing, schedules…there’s never an easy or “right time.”  Most surprising, was in this day in age of technological advances and screen time, there are a lot of doctors who will not budge from the good old face-to-face consultation.

Several of my recommendations steered me towards the Los Angeles area.  As I started contacting the offices, I was being asked to fill out forms detailing my entire life, or so it seemed, without even addressing whether or not they would “see me” virtually and if they took insurance.  Once my paperwork and case had been deemed suitable for the practice, it was the next step which they would not budge…in-office consultations only.  NO ONE I was referred to would see me virtually.  No photo submissions, no Skype, no nothing other than in person.  No one, except for Dr. C clear over in Texas.  I believe there’s a reason things happen.  Dr. C was originally the doctor I was going to use in 2014, and now all of my research and referrals had led me back to him.  It was meant to be.

By FDA [Public domain], via Wikimedia Commons

So, I began a more thorough paperwork process with Dr. C’s office in January, which eventually led me to a Skype interview of sorts with Dr. C in February.  I went into the interview knowing that the DIEP procedure was something Dr. C wanted to talk to me about, but I also knew I had a terrible fear of hospitals, pain, incisions, pain, recovery, pain.  I just knew it wasn’t the procedure for me.  I wanted the direct to implant with AlloDerm…I didn’t have time for expanders either.  My frame of mind is beating the ticking time bomb…not how I’ll look after, not about perfection, not about the size of breasts I’ll have when it’s all over.  I just want them gone.  Again, you think back to the “tummy tuck” with a DIEP, and as great as that would be as an added “benefit” (as some say) to a horrible surgery, I just couldn’t do it.  I had also come in contact with several of Dr. C’s patients, now my virtual friends, all of whom were very open with me about their procedures, recovery times and overall satisfaction, which helped me decide what’s best for me.

  I knew, without a doubt, within the first 10 minutes of our Skype conversation, that Dr. C was the one.  I kept turning to my husband with a big smile on my face, as I felt comfortable.  Someone was listening to me and answering all my questions while calming my fears.  Questions, oh the questions!  I love to research; I research too much perhaps, and I begin to freak myself out.  Dr. C. was very upfront about his reasons for performing or not performing various surgical options on me, he told us his statistics with both types of surgeries (DIEP and direct to implant with AlloDerm), the type of implants he uses and why, we discussed possible complications and outcomes that I may or may not be happy with, where scars would be, the dreaded drains, hospital time, recovery times, follow up possibilities, etc.  You name it, we discussed it.  But even after all that, I was still set on my decision, and we agreed on the direct to implant option.

  However, I was discussing a surgery that I knew wouldn’t happen until June…it was only February.  So, naturally, I counted the months in between and all the “what ifs” came flooding in my mind as Dr. C was talking.  And then it came out…”Dr. C, what if I get cancer between now and then.”   I don’t think anyone thought I was going to ask that question…my husband nor Dr. C, but it’s a very real one I live with every day.  I’m beating a clock…or at least I’m trying.  Rather than brushing it off and saying it won’t happen, Dr. C acknowledged my fear, discussed what some possible next steps could be at that moment and I felt better having asked it.  Through all of this, I’ve learned one thing…there are NO dumb questions when you’re trying to save your life. 

  That day, I knew I finally had a doctor and that the surgery would be happening.  It was official.  My paperwork was drawn up and sent off to insurance, hoping for an approval.  I cannot express how amazing the staff is at PRMA.  I have been trying to plan everything from overseas which leads to so many questions, and they've been there, by my side, no matter how many questions I have.  While I feel like I'm bugging them, I truly feel like they are happy to help and understand my anxieties.  No question has been too small.  

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.