Previvor Day

Apparently the US Congress declared the last week of September “Hereditary Cancer Awareness Week”, with that Wednesday being “Previvor Day”. So, I figured what better time to check in than today. It has been a while! I am six weeks out from my second surgery where my doctor irrigated the area for infection and replaced the implant with a new one and so far all seems to be going well. At the four week checkup, I got the all clear from my doctor to start exercising again (yay!) and he said I can finally breathe a sigh of relief because if I have gotten this far, chances are I am in the clear as far as reoccurrence of infection.

I started back at the gym last week and can I just say, I have never been more sore in my life. By Thursday, I couldn’t even walk… and it felt great. I am starting out slow and light obviously and my coaches don’t let my ego get me in trouble, telling me to back off if I need to (damn that competitive nature). So far I am able to put a barbell over head and can even run, jump rope and row. Getting pushups and pull-ups back will take some time, but overall I am happy with the progress I’ve made in a week. I have also started physical therapy at Performance and Wellness Chiropractic. They work on my back and have done wonders getting mobility back in my chest. I look like I have been attacked by a giant squid because of the cupping, but I already feel better.

Now that I am starting to feel “normal” after my mastectomy I am starting to turn my thoughts towards my hysterectomy in November and it scares me, honestly. I am tough as far as the actual surgery, but I can’t wrap my head around being thrown into menopause and still being “me”. In my head, I picture this cranky, hormonal mess that gets hot flashes all the time. I will be going on hormone replacement therapy, but it is still disconcerting. At one point this month, I even toyed around with the idea of postponing it until I get closer to 40. I hate to make a decision based on health insurance, but I will do it because it will be completely paid for after meeting my deductible. Also, I recently got my complete medical history from my biological mother and it doesn’t look good. I have relatives that got cancer in their mid-30’s. After seeing that, I know I am doing the right thing.

That’s right, I talked to my bio mother. If you’ve been following along and are familiar with the blog, you’ll remember how bummed I was that she wasn’t ready to talk to me. Well, that’s no longer the case. I reached out to her after her text back to my husband and just asked for my medical history and nothing more. After sending it to me, we started to open up lines of communication and the rest is history. We are in the process of trying to pick a date to meet and I couldn’t be more excited, but it also feels so surreal. I never thought I’d get to this point. I’m so thankful to have parents and a husband who are so supportive of this recent development and through the time when I wasn’t sure if I would ever talk to my biological mother.

Today, on Previvor Day, I just want to say that being BRCA+ might not be the best thing in the world, but it isn’t a death sentence either. It has allowed me to take action so that I don’t have to worry about cancer. All I can say is, if you have a family history of breast or ovarian cancer, go get tested. They now have a test for $99. Like I’ve said before, knowledge is power. And as we head into Breast Cancer Awareness month, EVERYONE should be checking themselves (yup, even you, men) and remain aware of the symptoms of breast and ovarian cancer. And that’s it, really. I am getting to the point where I am getting more “ok” with this every day. When people ask me “How are you doing?” I still find myself saying, “Oh you know, hanging in there!” But I am confident that someday I will be able to respond with, “Doing great!”

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Setbacks

“Abandon all hope, ye who enter here.” is what the sign reads above the entrance to Hell in Dante’s Inferno and it was a phrase that kept going through my head as I left my plastic surgeon’s office just 12 short days ago.  I felt like I had entered Mastectomy Hell because just days after getting an “all clear” and even returning back to CrossFit (and to all those who will criticize me, saying I should have waited, it was HEAVILY modified with no weight at all.) I was being told that the redness that appeared on the left breast was an infection on the inside and we would have to see how it would react to stronger antibiotics.  That Sunday, when the incision burst open, I was told I would be going back into the OR to irrigate the area and replace the implant.  If this did not work, I would lose the implant all together for 6 weeks or more.

I was not mentally prepared to even write this post until now, nine days post op, because I just felt hopeless.  The surgery itself was quick and painless and I went home right after it was over.  I’m pretty tough and after having two babies without drugs, physically this surgery was no sweat.  I needed no more than a couple Tylenol for the pain.  But mentally and emotionally, I was a mess.  It amazed and horrified me to see that the tides of recovery could turn on a dime, putting you back into an OR the day after you had just gone shopping for new clothes and gone out to dinner to celebrate your full recovery with your husband.  I was assured the infection wasn’t due to anything I had done and it just happens… rarely, but it still happens.  Now, as I was nearing the coveted six week point after a double mastectomy, I would be starting over on one side, complete with the dreaded JP drain hanging down my stomach.

After surgery, I was definitely thrown, but I was happy to see that I looked pretty much the same as when I went in and I didn’t wake up with the feeling of a 747 sitting on my chest like I did with my mastectomy.  For all intents and purposes, I looked normal save for a fresh incision where the old one had been.  I went in for several follow ups so my doctor could keep a close eye on my progress and I seemed to be healing nicely.  I even got my drain pulled out earlier than I had anticipated (which, anyone who has had a mastectomy knows is a HUGE day!)  But mentally, I just couldn’t get rid of the dark cloud over my head because I kept telling myself that looking and feeling good means nothing.  It can change in an instant.  If it doesn’t get better, I will be flat on one side for several weeks.  This attitude went on for several days until, much like Virgil helping Dante through literal Hell, my husband and kids yanked me out of my own personal Hell.  My girls just wanted me to be happy and playful and my husband remained understanding and supportive through his second shift of being a caregiver.  Through absolute silliness only seen in the innocence of children, I started to laugh again.  From hugs and kisses at every opportunity, I realized the absolute greatness that was my husband and I started to like my body again, even if it had failed me at this particular moment.  The incision will heal and the scar will fade, and as he kept reminding me, “This sucks, but you want it done right.”

Now, today, I have just returned from my last follow up appointment for the next two weeks and it was a positive one.  My five day culture came back negative for any sign of bacterial growth and the incision looks good, with no sign of infection or seroma after the drain was pulled on Monday.  My plastic surgeon says that going off antibiotics without issue will be the true test to see if this worked or not, but he finally has given me reason to be cautiously optimistic.  As I was driving home, I finally felt good again and I realized that what I have been depressed about is small potatoes compared to what women with actual breast cancer have to deal with.  I was afraid I’d lose an implant.  These women live in a constant state of fear that they’ll lose their life.  So I put on my aviators, rolled the windows down (it dropped below 90 here!) with the radio up and smiled on my way home.  I had come out the other side of this and look forward to being in the Paradiso part of my journey: Complete recovery.

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