What If This Kills Me?

It’s the question everyone with our mutation thinks to themselves, but rarely says out loud.  It could be because no one likes facing their own mortality or maybe you always want to put on a brave face for the sake of your family and friends… but it’s there, creeping and whispering in the back of our mind, standing right behind the cheerleader in us that’s screaming, “Don’t worry! These surgeries will fix everything!”

The answer is yes, I have asked myself this very question.  As it stands right now, before surgery, I have an 87% lifetime chance of contracting breast cancer and a risk of somewhere around 60% for ovarian cancer.  After I have both the prophylactic mastectomy and total hysterectomy, my risk will be somewhere around 1-2%.  I will have odds, with those particular cancers, better than the average person.  But the body has MANY different systems and who knows which one will eventually fail.  Not many people know it, but my risk is considered elevated for pancreatic cancer because of the BRCA1 mutation.  It is very hard to screen for and by the time a diagnosis is given, it is usually too late.  Not great news.

Now that I have thoroughly scared you, let me give you some good news.  We are still here and we are not gone yet.  Life is beautiful and should not be lived in percentages.  It is true that cancer could kill us in the future.  But you could die in a car accident today on the way to the grocery store too.  We just don’t know.  Why live in fear of something that is so completely unpredictable?  This knowledge you have been given shouldn’t stop your life, it should motivate you to live it.  So, here is a homework assignment for you:  Think of one thing you’ve always wanted to do and make it happen.  Climb a mountain, learn a language, take a class, it can be anything.  This goes for those of you without the mutation too.  Why wait for something like this to wake you up and make you do the things you’ve always wanted to do?  Asking yourself that creepy little question isn’t fun, but you are forced to really grasp the one certainty in life:  Everyone will die someday, whether it’s tomorrow or 70 years from now.  It really doesn’t matter how or when you die, it matters how you live.  Realizing that has been a gift and I can’t wait to share all the things I have planned after this small chapter of my life is finished.


Sibling Fever

I know I have mentioned my daughters before, but let’s spend a minute talking about the kids.  My husband and I have always had the belief that kids do not need to be lied to or have things “dumbed down” for them.  So, in terms that they could understand (they are six and four) we explained what was going to happen this year.  We explained that Mommy has this tiny little thing inside her that could possibly make her very sick in the future and that having these two surgeries would reduce that risk and we wouldn’t have to worry about it.  They seemed satisfied with that and just seemed concerned with how long I would be in the hospital and if it would hurt afterwards.  As much as I want my husband with me in the hospital, I think it is best that he stay home with them and keep their lives as normal as possible until I come home.  We also explained the wonders of pain killers and that I would have to rest, but the medicine would get rid of the pain.

After that conversation, I thought we were done.  But as we get closer, more questions come up.  Way back, before my husband and I were married or even engaged, we knew we wanted a family but wanted to agree on the number of children we would have.  We both were on the same page and knew that we would have two.  Two boys, two girls, one of each, it didn’t matter.  We wanted to keep man to man defense and did not want to play zone once we were outnumbered.  We were blessed with two beautiful little girls and a week after my youngest was born, my husband went in for the ole’ snip snip.  There has never been a second of regret and we are both happy with the decision.  Neither of our kids ever asked for more siblings.  But for the past couple months, one or both of them will casually mention the fact that they’d like a baby brother.  After my little one was born, I never wanted another baby and still don’t, but it is slightly disconcerting to have the very organ that grew my babies removed permanently.  I don’t feel like “less of a woman” for losing the ability to conceive and grow a child.  After all, for the past four years it has been impossible to get pregnant anyway, with my husband going through a vasectomy.  I had the honor of carrying and birthing two little angels and I am content with that.  It is an odd feeling to know that I won’t even have the option, though.  This morning, as we were eating our Sunday blueberry muffins, was the last time they asked about a sibling and after some explaining (while carefully avoiding the “where do babies come from?” question.  I am SO not ready for that conversation yet) I think they finally get that it won’t be happening.  They are best buds and came to the realization that they just want it to be the two of them anyway.

The point of this post isn’t to whine and make people feel sorry for me.  I am ready and would do the surgery tomorrow if I could.  My point is that if you are going through this, you can talk to your kids.  They understand so much more than we think.  It has helped to make them feel useful and give them a job.  They have decided that the oldest will do all of the cooking (she wants to be a singing, scientist chef when she grows up after all) and the youngest will take care of our dog.  I am interested to see what the six year old cooks.  They know that they will have to give gentle cuddles and have concluded that they need to make get well cards every day to help me get better.  I am so lucky to have the family that I have.  If I feel just a second’s trepidation about this whole process, I think of my girls and revel in the fact that I will be around to watch them grow up and have their own babies.  Because if there’s possibly anything better than having kids, it’s having grandkids and I definitely want to be around for that.

The Waiting Game

If you ask me in two months, I will probably tell you that the nerves and feeling of impending doom as surgery draws closer is the worst part of this process and a month after that, I’ll tell you that the recovery is the worst part, but for right now the WAITING is the worst.  I am two months and 10 days away from surgery and it feels like a lifetime. There have been days where I feel like calling my doctor and seeing if we can move up the surgery, but I know that’s not possible.  Multiple people who have already gone through this say that the waiting is, by far, the most difficult part and I believe it.  I will admit, my greatest fear is that something will show up in the breast tissue before we have a chance to take it out.  I have talked to women where this has happened to them so it is a very real fear.  Unfortunately, I don’t know the earliest age of onset out of the six women who were treated for breast cancer in my biological family, so this is one big guessing game for me.  I also have to wait until November for my total hysterectomy and that isn’t even on my radar yet.  I am trying to be comforted in knowing that, within the medical history I do have, there were no reported cases of ovarian cancer in the family.  At this point in the journey, you just have to hang tight, enjoy your normal, daily life while you can and hope for the best.

While I wait, I am trying to keep myself busy.  My mom helped me send in a petition to the state of New York to release my original birth certificate that lists my biological parents’ names.  So, this is the closest I’ve ever gotten to finding out where I came from.  It is scary and exciting all at the same time.  I am learning French to prepare for our trip to Paris in November and I must say I feel so bad for anyone that has to listen to me once we’re there because I am going to butcher this beautiful language.  I stare at photos of Paris and imagine what it will be like to finally go there.  I think having that trip to look forward to will get me through recovery too.  Finally, I am starting to put lists together of what I need at the hospital and at home while I am recovering.  My husband has also been most helpful with coming up with ideas of what I can do once I am stuck in bed.  He seems intent on making me a gamer but I am not confident that he will be successful.  I can’t decide if I am dreading being stuck doing nothing or if I will welcome the break.  Something tells me having incisions and implants stretching my pectoral muscles will not be my idea of fun.

I think that’s all for now.  Once I start buying things and getting organized I’ll post a full list of what I will have with me.  If you’re preparing for surgery too, you probably already know that this waiting sucks.  My advice is keep yourself busy and savor the little things that seem so trivial before your life gets turned upside down.

Support System

I remember after I got my diagnosis I told my husband first, then my parents and then my in laws.  For a week or so I kept it quiet and I don’t know why.  Maybe I didn’t want to be vulnerable or put my problems on anyone or maybe I didn’t want to tell everyone that there was something wrong with me.  But one day, I asked myself, “Why am I carrying this burden alone?” and I decided to go “Facebook public” because, you know, nothing is ever official unless it is on Facebook.  I was nervous, I’ll admit.  I am in a support group of about 8,000 women going through the same thing I am (If you are a BRCA patient, search for BRCA Sisterhood on Facebook. It is a wealth of resources and support) and it is appalling the responses some of them got.  I didn’t realize people could be so heartless and ignorant.  But, I wrote up a little blurb about what was going on and put it out there.  Up to that point, I had stayed pretty cool and collected about the whole thing but seeing the HUNDREDS of comments and text messages come in just made me cry like a baby.  I feel so lucky that every person in my life has been so amazing in rising to the occasion with offering help in any way or just telling me that I was doing the right thing.  So to all of you, thank you.  I appreciate it more than you know.

Now, if you are here and you are a friend/family member of a BRCA patient, I want you to read this next section carefully.  These are things you should NEVER say, especially to those going through surgery to reduce their risk.  It seems unbelievable but these are things I have heard said to people.

“You are playing God by doing this.”  Well, with that logic, vaccines, antibiotics, and Advil can be playing God too.  Wrong.

“You aren’t even sick yet. Why not wait until you have to do the surgery when you have cancer?”  Are you serious?  Cancer can kill you.  And treating it is just awful, both physically and mentally.  Go to an oncology ward and ask a person hooked up to a chemo drip if they would’ve taken measures to prevent this disease.  Put it this way, if you are getting ready to board a flight (Hopefully it’s not United!) and the flight attendant comes on over the PA and says “Attention passengers, we have just been informed that there is an 87% chance the flight will crash due to the pilot not being capable of flying.” would you say “Well, it hasn’t crashed yet, let’s just wait until there’s a problem.” or would you say “Hell no, put me on a plane with a capable pilot that only has a 1% chance of crashing”?  That’s what I thought.

“Why are you mutilating your body?”  Similar to the last comment, this one makes me want to bang my head against a wall.

“Why don’t you try a holistic approach and fight this with diet and exercise?”  Because this isn’t environmental cancer we are talking about!  You can eat all the kale and coconut oil you want, you will still have this faulty gene.

“Oh I got a boob job too!”  Bless your heart.  Please don’t compare your elective, outpatient, cosmetic procedure to major, medically necessary surgery we never asked for in the first place.

“I hope you know there’s a chance you passed this to your kids.” Trust me, we know.  We don’t need it rubbed in our face.

Sadly, I could go on, but you get the point.  If a man (yup, guys can have the mutation too!) or woman in your life comes to you and gives you the news that they carry the mutation, just repeat after me:  “I am so sorry to hear that.  What can I do to support you through this process?”  Easy as that!

I am so thankful I never heard any of those comments.  I am so humbled to see that I have a whole army behind me as I prepare for these surgeries.  That’s the greatest gift I could ever receive. XOXO


Five Stages of BRCA Diagnosis

If you have made your way to my blog, chances are you are either friends/family clicking on my link from Facebook (Hi guys) or you Googled “Is _____ normal after BRCA diagnosis?” and my blog somehow popped up in your results.  That “blank” can be any number of things, but today we are going to talk about all the feelings that go along with being told you have this mutation. There are quite a few and there is no linear schedule in which you will feel one at a time, always one emotion before the other.  One morning you will wake up refusing to believe it and another you will wake up and not get out of bed because you just want to cry.  We have been taught that there are five stages of grief (denial, anger, bargaining, depression and acceptance) so I have broken it down into five as well.

  1. Shock – This one, much like denial when you are grieving (because let’s face it, you are kind of grieving here), will always hit you first.  I remember I was sitting at my desk when I got the call from my PCP telling me I tested positive for the BRCA1 mutation.  Her next words to me were, “Sam… Are you there?” because I was rendered speechless and literally had no words to respond with.  She took me through the different options going forward; surgical, heavy monitoring, etc and I just sat there listening in a half conscious haze.  Before I even took the test, my husband and I decided together that I would go ahead with surgery should the test come back positive, but when my doctor mentioned monitoring I remember my brain thinking, “Well, monitoring isn’t so bad, we will be fine with that” because I just couldn’t accept that I actually had to go through with it.  Monitoring is a good option for some, but it wasn’t the right one for me considering my history and I had no updated medical information on my family members that did have cancer.  I am a “better safe than sorry” kinda girl.
  2. Guilt – Yes, you will feel guilt if you have caught this mutation before it can unleash cancer upon you.  Whenever you read about a horrible car accident or tragedy and there is only one survivor, that person will talk about “survivor’s guilt”.  In this instance, you are the survivor and cancer is the horrible car accident and you feel guilty for being able to save yourself from it when so many people before you have had to suffer the consequences of this insidious disease.  If you have children, you will feel a soul crushing, heavy as lead sense of guilt because, sadly, there is a 50/50 chance that you have passed this mutation onto them.  I have two daughters too. So yeah… that was fun to go through.  Finally, once you make this news public, you will get a lot of sympathy and support and you will even feel guilty about accepting it because you don’t actually have cancer and all this energy should be spent on someone who really needs it.  You need to put that out of your head because if you are like me and taking the surgical route, you WILL need the support.
  3. Fear – “Fear is the path to the dark side.”  Yoda said it best.  Fear is a sneaky little bastard that creeps up on you when you are doing the most mundane of tasks and takes your breath away.  I have never been through major surgery.  I remember walking into my bathroom and stopping dead in my tracks at the idea of being put under general anesthesia.  The idea that I might not be around to dance with my husband at my daughters’ weddings if I didn’t act on this new information crippled me.  With fear, the only real thing you can do is act on your diagnosis and tell yourself that you are reducing your risk by having the surgeries and that you don’t have to be afraid.
  4. Anger – You will feel just plain pissed off that this is happening to you.  I remember thinking, “I am a good person and there are horrible people out there that are perfectly healthy, why the hell is this happening to me?”  Anger is perfectly normal, but you have to keep it in check because it can affect relationships, even with people who are doing everything to help you through this.  For me, I get over the anger by reminding myself that this information is a gift and it is now allowing me to take my risk below a person with no genetic mutation when it comes to breast and ovarian cancer.  It might take a couple surgeries to get there but hey, I’ll get new boobs and no more periods in the process.
  5. Action – Once you finish the pity party that you will inevitably have for yourself (Ben and Jerry’s, party of one?) and pull yourself up by the boot straps, you will be driven with a new found motivation to act.  Even 20 years ago, people did not have this information and we were told that cancer was not genetic.  It sucks that our bodies were made differently than others, but this information is a gift.  Do something with it.  Whether you are going in for surgery or just closely monitoring, you have to choose to do something with your test results.  Sticking your head in the sand simply doesn’t do anything productive.

Are there a lot more emotions you could be feeling right now? Sure, but we would be here all day.  My point is that you will go through a lot in your head and it is all perfectly normal and you are not alone.  Check out the FORCE website for resources and even make an appointment with your local genetic counselor who has a lot of experience dealing with cases like ours.  At the end of the day, you just have to keep on keeping on.  One positive feeling that comes from this mess:  You appreciate everything in your life a little more.  You hug your kids tighter and savor that cup of coffee in the morning and take a minute to watch the sunset at the end of the day.  Hold on to that, because that feeling of gratitude will get you to the other side of this with your sanity intact… At least I hope.  Stay tuned for that.

This Means War

Do you remember in my first blog post, I said I would offer up some tips from my experience with these preventative surgeries?  Well, get ready for your first one.  Are you ready?  OK.  Before you even THINK of getting your primary care physician to order the test to see if you even have the genetic mutation, make sure you have a rock solid health insurance policy.  I know Healthcare has been a big topic of conversation lately, and honestly you don’t realize how broken our system is until you have to go through major surgeries.  I imagine how much simpler this already difficult process would be if Humana, my health insurance company, actually took care of me.  On their website they say “We strive to be your lifetime partner in reaching good health.”  Well, that is only true until you ask them to actually pay for something besides a yearly physical or a trip to the clinic for a cold.  The level of frustration I have reached from dealing with them is enough to make me want to scream.  Really, after talking to other people going through this same process, they are having the same problem with other companies.  It is a matter of greed and health insurance companies not wanting to affect their bottom line by paying for major procedures (ones that could save TENS OF THOUSANDS down the line by preventing the disease from happening, by the way).

We left off with starting the process of getting an appointment with the genetic counselor at the Margaret Niedland Breast Center.  I had my appointment all set up when I got a call saying that I needed an authorization from my primary care physician (going forward, we will just call her PCP for ease of typing).  The funny thing about PCP’s is, some are very helpful and want to do everything to help you.  But then, some are completely useless and look at you like you’ve got three heads whenever you suggest doing a test that isn’t part of their everyday repertoire.  Mine was the latter.  She actually asked me “Why do you want to do this?” after telling her about my family history.  After brow beating her with my newly found information, she finally agreed to the test but then had no Earthly idea where to find a test because she had never ordered one before.  Apparently, my original option was not in network. So folks, here is your second tip:  Get a competent PCP before you start this process too.  Long story short, the lab I used just happened to have a sales rep in the office and she ordered a test through them, leading me to believe it was in network through Humana.  In the end, Humana refused to pay the claim stating that the lab was not in network and I didn’t have an authorization on file, which is wrong on both counts.  This isn’t even the worst of it.

With my positive BRCA result in hand, I started making appointments with specialists.  Every person I talked to recommended the same guy: Dr. John Rimmer.  He was not in network, but he was the best so we decided to pay out of pocket and let Humana cover the hospital and anesthesia bill.  Wrong.  Insurance reps are maddening because from day to day, you get different excuses as to why they will not cover your procedure.  It started with the fact that Dr. Rimmer was out of network so they wouldn’t pay for anything.  Then, it was the fact that our specific policy didn’t cover prophylactic surgeries. In short, we will wait for you to get cancer before we will help you.  This fight isn’t over and it will probably continue through out the year, considering I will then have a hysterectomy to get processed in November. I am trying to remain hopeful that Humana will come through for me, but it gets harder and harder to stay positive every day

This post rambles on, and I am sorry for that because I am usually concise with my thoughts.  But I want you to be aware and ready for the war you might have to wage on your insurance company to get the care you deserve should you decide to go the surgical route with your new BRCA diagnosis.

In The Beginning

Before we can go into the steps I’ve taken thus far, we have to go all the way back to the beginning, like before I was born.  People that know me and know my background always ask the same question: How did you even know to test yourself?  Well, it was one line on one piece of paper in a stack full of them that potentially saved my life and this is how I found it.

My mother was 21 years old when she had me and before I was even born she knew she was not going to stay with my father.  Instead of keeping me in a home that was broken from the beginning, they both made the incredibly selfless choice to put me up for adoption in the hopes that I would go to a loving and stable home.  Their wish was realized, because I did!  My mom and dad were hand picked off a waiting list and one Friday in the dead of winter in upstate New York, they got the call.  I always appreciated my mother for her choice, but it wasn’t until I had my own children that I realized how gut wrenching that sacrifice was for her.  I have known I was adopted since before I can remember and it is a credit to my parents because I truly think that is how you have to do it when you adopt a child.  It was never a bad thing or a taboo thing, just a part of me.  As I got older, my parents made me aware that there was some breast cancer in my biological family.  I think when you are young, you have that feeling of invincibility and the idea of breast cancer was very abstract and inconsequential.  Just a blurb you have to write down on new patient paperwork.  “History of cancer in your family?” Yes, check, breast cancer.  But there’s no way it could ever touch me, right?

Fast forward several years.  My husband and I were in the Bahamas and talking about Bucket Lists.  I realized that meeting my biological mother was at the top of my list, if for no other reason than to say thanks and let her know she made the right choice.  So when we got home, my husband spurred me into action and we started the search.  My parents have always been very supportive of me learning where I came from so my mom handed over a file of paperwork from the adoption.  I got to the section with basic background information on both parents.  My mother was 5’9″, blonde hair, green eyes, just like me. Pretty cool!  I turned the page and then I saw it:

“Her mother, grandmother, sister, two aunts, and a great aunt were treated for breast cancer.”

The search came to a grinding halt because this was a big deal and I knew that six people, all on the same side, in different generations could not be a coincidence or just “environmental” cancer.  The very next day I Googled “breast cancer gene test” and learned that the gene actually had a name and that more and more people were offering the test since Angelina Jolie so publicly came out about her testing and preventative surgeries.  So, I found the phone number for the Margaret Niedland Breast Center in Jupiter, FL and started the process of getting an appointment.  That is a whole other story which will take an entirely new post to tell.

You’re a Mutant, Sam

If you read the title of this post in Patrick Stewart’s voice from X-Men, then we are going to get along just fine.  Hi there! My name is Sam and earlier this year I tested positive for the BRCA1 mutation.  “What is that?” you might ask… Well, quite simply, everyone is born with the BRCA gene, yup, even you men.  It is a part of our genetic makeup and it regulates and fights off tumor (or cancer) cells.  When you have a mutation, the gene tells your body NOT to fight those cells, which puts you at a higher risk for breast and ovarian cancers.  Environmental factors, of course, can play a role in contracting the disease, but for us mutants, it is a whole heck of a lot harder to fight off. It is a lot more complicated than that, but just for the sake of time and the fact that most of us aren’t medical professionals and don’t understand the nitty gritty of it, that’s the Cliff’s Notes version.

The purpose of this blog isn’t a scientific one, anyway.  All of my life, I have always processed things by writing them down.  Since this is going to turn out to be a pretty life-changing year, I decided to chronicle it in the hopes that it helps even just one person who is diagnosed after me.  I hope to share encouragement, tips and even a little humor along the way because if you lose the willingness to smile amongst this trial, then this horrible disease and circumstance has won.

The stats: I am a 34 year old mother of two BEAUTIFUL little girls who are the lights of my life and I am married to, quite possibly, the best man God ever created.  If we’re being honest, I am putting myself through hell this year just so I can stick around and be with him when I am an old lady.  Sorry ladies, he won’t be in the dating pool anytime soon.  I live in South Florida and have always been athletic, playing volleyball for years and going to CrossFit 6 days a week.  I like to think being active and getting tons of Vitamin D from all the sunshine has kept me cancer free thus far, but I digress.

There is so much more to say, but I will finish the basic introductions and end here because, if you’re still here, I know you have things to do.  Thanks for reading, and I hope you stick around!