Secondary Rejection

I have been sitting at my computer for the past 15 minutes just watching the cursor blinking on and off on the blank page, just trying to wrap my head around what I am about to write.  With this blog, I try to be helpful to those who will come after me on this journey but for today, we are going to go a different direction and we’re going to get very personal.  Some may think I am crazy for putting this all out there, but writing has always been an outlet to process a buzzing of different emotions and thoughts.  So here we go.  Today we are going to talk about how the search for my biological mother that was 34 years in the making came to an end.

When you are adopted in the state of NewYork, it is notoriously hard to get information because all documents are sealed and you have to petition the courts to get information, and even then it is probably going to be non-identifying.  I actually started my search years ago, but the only thing I could do was register with the state and see if there were any matches.  There weren’t because the registry was started after my adoption, so my birth parents probably didn’t even know it existed.  After all of this BRCA business started, we pushed further into the court system and discovered they wanted a ton of money to assign a guardian ad litem to be the go between.

Because of other technologies available to us now, it turns out I didn’t need the court system at all.  A girlfriend of mine and I were talking about Ancestry DNA because she had done it and it was cool to see your nationality broken down and you can even get linked to distant cousins.  It isn’t guaranteed, but it sounded like a fun thing to try.  Before my surgery, she gifted me a kit, thinking it would give me something to get excited about as I healed.  So, I spit in the test tube and mailed it off.  Approximately six weeks later, I got an email saying my results were in!  I clicked on the link and saw that my nationality was spot on with what I was told.  You can’t look at me and think there isn’t Viking blood in there somewhere, which was the majority of my genetic makeup.  Then there was a button to see any DNA matches in the system, and I nervously clicked on it.  I saw there were hundreds of matches, but some were 5th and 6th cousins and some weren’t even a sure thing.  However, right at the top of the list was someone who was listed as my first cousin which I thought was awesome because they definitely had to know my birth parent.  My mom, husband and I started Googling names, especially the ones listed as first cousins and discovered they were all from the same group of five sisters.  After looking at the ages of these women, we deduced that the man at the top of my list was not my cousin, but was in fact my half brother.

For 34 year years, I never thought I would ever get to this moment.  I grew up thinking my mother was this hero that was so selfless that she bravely gave me up because she wanted the best possible life for me.  She was an abstract idea and I never thought I would have her name, but there it was, black and white on the computer screen.  Of course, I spent the entire day researching who she was.  I got to see that she made quite the career for herself and that she had two sons.  I think learning I had brothers out there somewhere made me more excited than actually finding her.   Being an only child, you do get lonely and the idea of siblings always left me wishing that I knew what that felt like.  It also took my breath away to know that she was diagnosed with breast cancer at 42 years old.  If that is the age that was going to get me, then I beat it by seven years.  Knowing that such a close relative had it made me feel more justified than ever in making this difficult choice to undergo preventive surgeries.

After I had found all the information I could, including her Facebook page and email address, I decided I wanted to contact her.  Much like I was when I started this post, I sat there staring at the screen because how do you tell someone, “Hi there! I’m your daughter!”?  I was finally happy with what I had to say and I sent it off to every email address I could find, hoping I would get the right one.  One day went by.  Then two.  After three, I couldn’t decide if she was ignoring me on purpose or if she really wasn’t getting the message.  After a week of no response, my husband, God bless him, volunteered to call her as my intermediary because I just couldn’t do it and we figured it might take some of the pressure off of her to have a middle man.  It went to voicemail and after 24 hours, we got no response.  At this point I was angry.  In my mind, I was being ignored and that was just cruel.  I told my husband that at this point, she could tell me to go away, I just wanted a response.

A day later, I got my wish.  She sent my husband a text, but what she had to say was not what I had spent my life expecting to hear.  I always expected her to be overjoyed to hear from me and that she would want to know what I was like as a grown up.  Well, that was not the case.  She told my husband that she did not want to communicate with me and the she insisted I not contact her children as they didn’t know of my existence and that I should not contact her as she would reach out if she ever felt ready.  Oh and tell “your wife” that I am BRCA positive so she should get tested.  Well… thanks.  Apparently in the adoption world this is called “secondary rejection” because the biological parent is rejecting you for the second time.  Even though her response was cold and insensitive and an absolute kick in the gut, deep down I actually understood where she was coming from, but it didn’t make it any easier.

So where does that leave me now?  Heartbroken obviously, but all I wanted was a response and she gave me one, even if it wasn’t to me directly and it wasn’t the one I was hoping for.  I am sad that I won’t get to know my brothers.  I tell myself every day that she didn’t reject me but the memory of a time in her life that was very difficult and she was not ready to revisit.  I tell myself that at least now I have closure and I can stop wondering if she was out there.  All of this happened while my kids were on a trip with my parents.  When they came home I gave them an extra big hug and while I am trying to be understanding, a big part of me doesn’t understand how you can turn away your child, no matter how long it had been since you last saw them.  As a mother myself, I can’t imagine being so detached from one of my children.  I also can’t imagine having to give up a baby, so I can never know what it takes to cope with those feelings or what it does to your state of mind once that child resurfaces.  One thing I do know is that while my biological mother might not want to talk to me, the mom and dad who matter the most have been incredibly supportive through all of this.  I am surrounded by people who love me and that will always be enough.

One Month Later

Here we are! I never thought the one month mark would get here.  This month has definitely been the most challenging I’ve ever faced and it has gone both slow and fast at the same time.  I re-read my last post, which was written right after surgery and I have to apologize to those of you who are reading this and have yet to go through your mastectomies.  I really did not mean it to sound so scary and harsh and I am here to tell you that no matter what, it does get better.  Now that I have had a little more than four weeks to heal and attempt to get back to normal, I wanted to give some tips so that you won’t lose your sanity and so that you can stay as pain free as possible.

  1. Support.  This is absolutely number one on the list of things you NEED as you go through this.  I have a wonderful, devoted husband who tended to my every need and one tough, dedicated mama who stayed with us for a week to help in any way she could.  I am here to tell you that I would not have healed this well without them.  After surgery, I compared myself to having T-Rex arms because you really cannot move above the elbow.  However, if I needed a glass of water, a snack or the occasional chocolate treat, it magically appeared because my mom and husband were just that good.  My mom kept herself busy by picking up any slack in the house cleaning department and my husband learned to cook and make the perfect cup of coffee, even though he hates the stuff.  Then there were the kids to consider.  My dad and in-laws were rock stars in that department because while I was being taken care of, they were entertaining my kids and keeping them distracted so they weren’t worried about their mom.  So, we were a well oiled machine and not having to worry about anything helped immensely.
  2. Surgical Team.  This seems like it should be a given but I am going to mention it anyway.  My doctors, Dr. John Rimmer and Dr. David Lickstein truly are artists and a top team when they work together.  No matter who you choose to do your surgery, make sure that you are 100% comfortable and confident in them.  I knew I was in the best hands and never once worried.  At a short four weeks later, my incisions are barely visible and Dr Lickstein took what could have been a scary mastectomy reconstruction and made it look like a breast augmentation.  No woman going through this process actually wants her breasts removed, but looking down and being happy with the results once it’s finished definitely gives you peace of mind.
  3. Comfort.  If you take away one thing from this post it is this:  Don’t try to be a hero!  Stay ahead of the pain.  If you need the pain meds, take them.  Rest and let others take care of you.  As women, we want to get up and do things around the house, but you really need to rest if you want to heal without complications.  Finally, the one thing I could not live without were my Axilla-Pillas.  You will not want to put pressure on your incisions or drain sites, so these were with me 24-7.  Put them under your arms and keep them there.  I even slept with them.
  4. Mental Toughness.  Everyone talks about all the physical things you’ll go through, but this really is a mental game too.  First of all, this is not a boob job.  It is not exciting and I very much doubt that any of us want to be in this position.  You are doing this to save your life so there is that worry in the back of your mind until that clear pathology result comes back.  Tell yourself that you are a badass warrior and cancer will not take you down.  Sitting down inside all day will also start to get to you.  I don’t know about you, but I love being outside playing golf, riding horses, swimming in the ocean, etc.  The fact that you can’t do any of that will drive you nuts.  Do not sit inside your dark bedroom all day.  Open a window.  Go sit outside.  Do anything so that you don’t feel like a hermit.  Just having sunshine on your face helps tremendously.  Finally, do things to make you feel good.  At one week post op, my mom took me to get a pedicure and the day after that I went to the Blow Dry bar to have my hair done.  Pamper yourself in any way that you can, you definitely deserve it.
  5. Patience.  Here it is, the toughest thing to master through all of this.  Healing does not happen overnight, no matter how badly we want it to.  Be gentle with yourself and know that time is the only thing that will literally heal all wounds.  If you rush it, you will battle seromas under the skin like I did.  The more you aggravate things, the more fluid your body produces and the more you will have a giant needle aspirate fluid out of the breast.  I’m thankful every day that it finally resolved on its own.  At one month, I have been cleared for light exercise and I am getting better every day, but even now I can feel that I am still healing.  It feels great to be moving and exercising again, but I am having to take it very slow and use tiny, baby dumbbells even though I want those heavy barbells like everyone else.  Patience is not something I excel at, but I’ll get back to where I was eventually.

And that’s it in a nutshell!  This is a process that has tested my sanity, but there hasn’t been one second that I have regretted my decision and that is the biggest point I want to make.  This pain is temporary, but peace of mind lasts forever.

Done

I am nearly two weeks out from having my prophylactic bilateral mastectomy and I am finally getting to sit down and write about my experience.  Needless to say, it has been quite a ride.  Let me start at the day before surgery.  If you are waiting for your surgery, the day before is going to go fast and slow at the same time and you will have a lot of anxiety.  I was lucky that my dad kept me busy by taking me golfing.  I loved getting to be outside and it was nice thinking about how badly I was playing rather than the hell I was about to endure the next day.  I highly recommend doing things you enjoy to stay busy.  I will say that I asked my doctor to prescribe me two Xanax, one for the day before and one for the morning of.  I recommend doing the same thing because it helped me immensely in staying calm.  This was my first major surgery, so I was very nervous.

When the day was finally here, it started like any other except for the fact that I couldn’t eat or drink anything.  If you can, schedule your surgery first thing in the morning so you don’t go in starving and VERY thirsty.  I woke up and got my kids ready for camp.  My husband and I drove them together and we explained what was going to happen.  I thought saying goodbye to them as they walked in was going to be extremely hard, but I actually held it together because I didn’t want them to worry.  We went home, grabbed our bags and headed to Jupiter Medical Center.  When you get there, they will register you and then send you to the pre-op area where they will let you change and do all of your routine tests to make sure you are good to go.  You will talk to anesthesia and they will explain how they will put you to sleep and keep you that way for the next six hours.  When that is finally finished, your family is allowed to come back and let me tell you, we packed the pre-op area with my husband, parents and in-laws.  I think we actually started taking chairs from other rooms.  By this time, I had about an hour to go before they took me back and it was very quiet.  I had HGTV on, but I wasn’t watching and had my family there with me, not knowing what to say because they knew that I was stressed out.  When we had about a half hour to go the nurses came in to give me my Versed and thank God for that stuff because I might have had a panic attack when it was time to go.  It hit me instantly and everyone laughed when I said “Whoa!!” and got very relaxed.  At exactly 1 pm, the time had come and my family had to leave so they could take me in.  I was still relaxed as the nurses wheeled me through the maze of the hospital, but no dose of Versed can prepare you for the chaos of the OR.  I remember about five or six people over me, strapping me onto the table and getting me all prepped.  The last thing I remember is someone putting a mask over my mouth and telling me to breathe.  Anesthesia is a funny thing.  To my family, they had to wait a long six hours for me to finish, but to me, it felt like a second between going to sleep and waking up in recovery with my husband standing over me.  The first thing I remember hearing was “Everything went perfectly, you went straight to implant and you got to keep your nipples.”  I remember being extremely relieved, even under heavy sedation.

I do not remember being wheeled to my room and I barely remember my family coming in before passing out from exhaustion and a heavy dose of Morphine.  I do know that I pushed the pain pump button through out the night and the nurse had to put a heart monitor on me because my heart rate got down to 39 BPM.  Apparently because I am athletic, they didn’t seem worried but whenever I closed my eyes to sleep, the machine went crazy and it made it very hard to sleep.  On Wednesday morning, I still couldn’t eat or drink anything because of the nausea and I remember being extremely pissed off because I insisted that I was nauseous BECAUSE I didn’t have any food or water.  Around 8 am, I got a new nurse and I FINALLY got to eat.  Hospital French toast had never tasted so good.  After breakfast, I was more “with it” and went about the business of getting the hell out of the hospital.  I showed my nurse that I could stand and walk and I asked to be taken off the Morphine drip and opted for Percocet instead.  Getting off the Morphine is a game changer and I recommend getting off that stuff as soon as possible.  With the removal of the PCA, also meant the removal of the heart monitor, catheter and IV fluid.  I finally felt like myself again and after I got the all clear from all of my doctors and nurses, we were getting dressed and going home.

For this surgery, they recommend staying in the hospital for two nights.  I stayed for one and if you can, try and get home as soon as possible.  Sleeping in your own house without beeping and vital checks every hour does wonders for your recovery.  If you can, sleep in a recliner because it will hurt to lie flat.  The first few days were the hardest.  I was on a steady dose of Vicodin for the pain.  The only hiccup I encountered was two panic attacks that left me dizzy and breathless.  I was so concerned about post op pneumonia that I was breathing TOO deep and depleted my body of all CO2.  Breathe normally and when you can, get up and walk around.  That will keep your lungs working just fine.  Fast forward almost two weeks and I am off the pain meds completely, instead relying on Advil every so often (Ask your doctor before you take Ibuprofen as it can make you bleed more.) and I have already had a set of drain bulbs removed.  There is no sugar coating it, having the drains SUCKS but it is better than dealing with seroma.  Both of my doctors said I am healing perfectly and I pray that I continue to do so.  If you believe in homeopathic methods of healing, eat a lot of Pineapple, drink protein shakes every day and take your Vitamin C.  One thing I want to mention, also, is have a solid support system.  I am not kidding when I tell you that you will not be able to reach a glass on the table next to you without help.  My husband and my mom have been rock stars in taking care of absolutely everything while I get better.  I knew I married a good guy, but this time in our lives has shown me just how lucky I am.

To get through this process, everyone talks about the physical pain and healing, but you need to be mentally tough as well.  Lying in a recliner while binge watching Grey’s Anatomy is fun for exactly one day.  Then cabin fever starts to set in, but you are in too much pain to go anywhere and you have four grenade-shaped balloons hanging around your waist.  There isn’t a shirt in the world that can hide them.  When you can, go outside  and do not stay in bed/recliner all day.  The sun does wonders for your mood.  The last thing that has been particularly hard to deal with is the numbness and loss of feeling in your chest area.  It is one thing to hear your doctor mention this side effect, it is another thing entirely to hug your husband and not realize that your chest is touching his.  The first time I was able to hug my children nearly broke me because I couldn’t feel a thing besides my arms around them.

I am not telling you all of this to frighten you or make anyone feel bad for me.  Instead, I want my experience to help all of the ladies who have yet to go through this by bringing awareness of what to expect.  The point is, this is not a cake walk but it isn’t impossible.  Every day gets easier and easier and while I can’t feel my kids hug me right now, I am assured that some feeling does come back and, most importantly, they can feel me.  Thanks to this surgery, my 87% chance of breast cancer just got reduced to 1%.  So, they will get to feel me hug them for years to come.

 

Home Stretch

I can’t believe it but the big day is almost here!  Today I report to the last of my pre-op appointments and in five days I will report to the hospital for my nipple sparing prophylactic bilateral mastectomy (wow that’s a mouthful).  The past few weeks I have really been trying to cram in as much time with friends and family, golf and horseback riding as possible.  I know I will be stuck inside in my trusty recliner that sits by my bedside so I cherish every minute I get to spend outside in the sunshine doing things that I love.  A few weeks ago, my dear friends threw me a “Boob Voyage” party at Costa Palm Beach, one of my favs.  I never thought I would have the opportunity, but I even had my very own boob cake, complete with nipples because, you know, we’re sparing those.  I got to go see a bunch of family in Missouri and I even went on what I am dubbing a “Mastectomymoon” at The Breakers in Palm Beach.  I think taking that little getaway is what really mentally got me ready to do this.  Spending quiet time with my husband before I essentially become his patient was invaluable to me.  So that is my piece of advice for today:  Visit friends and family and do the things that you love as much as possible as surgery looms closer.  In fact, that is just general life advice.  Why wait for a scary surgery to do that?

When I scheduled my surgery I talked to several women who had already gone through it and they all told me that as it gets closer you get this sense of peace about you and you aren’t really scared anymore.  I thought they were crazy and all the Xanax in the world wouldn’t be able to calm me down, but they really were right.  Over the past month I have run the gamut of emotions that you’d expect.  I started with crippling fear and anxiety that was replaced by mind numbing anger that this was happening to me, but I am happy to report that there is light at the end of the tunnel and you eventually make peace with it.  I do occasionally get the jitters but for the most part, I know I am doing the right thing and everything will turn out alright.  I am still majorly pissed about not being able to ride, play golf or go to the gym, but when you look at the big picture, this is 6-8 weeks out of my life in exchange for a lifetime of being worry free. So, I will rest and binge watch Grey’s Anatomy until I am healed and can get back to the fun stuff.

More…

So, it has been a minute since I wrote last.  Mostly, I didn’t have anything new to say because now I am in a holding pattern until surgery in July.  It is an odd feeling to have your life put on hold and to have a clock that slowly ticks down to a truly scary experience.  I froze my Crossfit account for all of July and August and that made me more sad than it should.  The rational part of my brain knows that I can still go visit friends at the gym (be an “assistant coach” as my coach puts it).  I’m not barred from entering, after all.  I also know that I can get back to it after I heal.  The fact that I have to put everything I love on hold for months, though, pisses me off in the irrational part of my brain.  In the time I have been writing this blog, we have also been in a constant battle with my insurance company.  I don’t want to name any names, but it begins with H and ends with umana.  If you can avoid getting a policy through them, I would recommend it because they have been simply horrible to deal with.  After two denied appeals, we are in the last stage of this process: Independent Review.  We wait for the decision from the review board, but I don’t have much hope.  My mom, however, has been a pitbull with this stuff and I would not have gotten this far without her.

But enough whining for this post.  I want to go back to my entry on the Five Stages of BRCA Diagnosis.  The last stage, I talk about taking action after receiving this information.  That can mean undergoing the surgeries to remove the offending organs and monitoring intermittently, but it is so much more than that.  What will you do with your life once this is over?  While this may feel like a huge burden to carry right now, going through the process to literally remove the risk is such a small chapter in your life.  The recovery will hurt and you’ll be taken out of your normal routine for a time, but the fact that you will be a “previvor”, someone who stops cancer even before it can start growing within them, is a huge gift.  It will change your life and your outlook on things.  And it should.

So here is how it changed me:  The way I see it, hundreds and thousands of women died while researchers were trying to isolate these genes to determine that cancer could indeed be hereditary.  I feel like it would be a disservice to those women to cheat cancer and then go back to my pre-surgery life where I wasn’t doing anything that “lit me up” (besides being a mom of course).  I feel like I need to do more to help the people who are fighting and have yet to fight this disease.  So, starting in the Spring 2018 semester, I will be an FAU Owl so I can work towards my degree in Nursing.  It’ll be tough to go back to school after 12 years off (wow, has it been that long?) but I am excited to go to work.  My goal after I finish is to work the Oncology ward, possibly with a specialty in breast cancer.  It may seem like a depressing job, but I want to help people defeat this disease and if that is not possible, help them leave this world with as much dignity and grace as possible.  I am scared.  I am excited.  At 34, I finally figured out what I want to do with myself.  So, for that, I am eternally grateful to this burden for opening my eyes to what I want to be.  Go Owls!

university-logo-present

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.