Previvor

After I had my mastectomy in July and started to feel “normal” again, the thought still lingered in the back of my mind, “you’re not finished yet.” I knew that even though life felt back to normal again, I would disrupt it a third time. So the relief I felt, although nice for a time, was fleeting because of the hysterectomy looming over me.

But now I can proudly say that I am finished on this journey and can now call myself a Previvor, as I have done every preventative surgery possible to ensure I will never be touched by breast, ovarian, uterine or cervical cancer! Six days ago my husband and I ventured down to UMiami Hospital to remove the organs that grew and housed both of my babies for nine months so that I could be sure I would be around for those same babies, now seven and almost five, as they graduate, get married and have babies of their own.

My husband and I arrived at 5:30am, as the city still slept. We were one of the first to check in and watched as the day shift nurses arrived to relieve the tired night shift. Unlike Jupiter Medical Center, UMiami is not big on visitors in the pre-op area. I went back alone and went through the standard procedure of getting IV lines started, heart monitors secured and I answered the same set of questions 50 times between the nurses, doctors and anesthesia team that rotated through. Finally, there was some calm and they let my husband come back to sit with me. There really wasn’t much to talk about. Mostly we just sat in anxious and nervous silence as I squeezed his hand. Finally, a team of nurses came in and said those four little words, “It’s time to go.” and I lost it. This surgery has been such a point of anxiety for me because there is SO much unknown to think about after the surgery is over and done with. Finally the flood gates opened and as I was openly sobbing in front of everyone, they thought it would be a great time to give me a shot of Versed to calm my nerves. It helped immensely because just as I was forced to let go of my husband’s hand as I was wheeled through the double doors, it kicked in and I went into blessed incoherence as they put me to sleep for the procedure.

Now, when I had my mastectomy, my husband’s face was the first thing I saw when I woke up. Remember Miami’s no visitor policy? It was the same in post-op. I woke up alone with one nurse by my bedside. Anyone who has been put under general anesthesia knows how loopy you are when you come to, and it would’ve been nice to see a friendly face there. When I could finally talk, I asked for him and I just kept being told the same thing, “He’ll be back soon. He’ll be back soon.” After an hour of “He’ll be back soon.” I finally got pissed off and TOLD them to call him back. Five minutes later, he strolled through the doors. Five minutes after that, they told him he had to leave again. A note for the UMiami Hospital: Having your family with you does more good than any medicine you can give.

When it became apparent that I would be sitting there alone all day, listening to my neighbor dry heaving every two minutes from the anesthesia, I asked the nurses what I had to do to get out of here. Some women stay over night after this procedure, but I wanted it to be scheduled as outpatient. They said I would have to stand up and sit in a chair, keep fluids down, keep bland food down, walk to the bathroom and go pee, all while maintaining strong vitals through out. So I said let’s do it. One by one I checked all of the items off the list and my team of nurses told me that it didn’t even seem like I had surgery. I really think it was just sheer will that made me get moving so fast, because as someone who is excited to work in a hospital, I hate being a patient there. So at 1:00PM, I was getting dressed and being discharged so I could go home.

As I rested, I was very relieved to note that I still felt like “me”. My biggest fear was that I would somehow become this raging lunatic because of the change in hormone levels, but truthfully I felt exactly the same. There were no hot flashes either and I am happy to say that I never felt one because I was able to start my Estrogen patch the next morning. After two days, I felt well enough to get up and moving and was even able to attend a school function at the local mall with my Dad so we could get my Mom a birthday present. The recovery from this surgery has been a night and day difference from my mastectomy. Aside from some incisions on my stomach, I feel totally back to normal. So, if you are waiting to have this surgery, let me tell you that I was SO scared too but it really isn’t as scary as I thought. I feel like myself and I am confident you will too. So don’t worry.

Tomorrow will be one week since the surgery and I am so relieved that I am finished. Of course I will still monitor my health closely (unfortunately, pancreatic cancer and melanoma are still risks and as of right now, there are no preventative measures) but I no longer have to worry about the extremely high risk of breast or ovarian cancers. I can picture a future in which I see my children grow up, not one that has me going through chemo in the hopes that I’ll survive. Because that has been my “Why” through all of this; making sure my children never had to say, “I wish my mom was here.” through any momentous occasion in their lives.

As we approach Thanksgiving, all I feel is gratitude. It is so easy to think of everything this mutation has taken from me, but I don’t see it that way. I saw a quote and it really stuck with me: “Some women are lost in the fire. Some are built from it.” This process really made me realize how strong I was. I definitely wasn’t fearless, but I chose to stare fear in the face and push through it anyway. I am thankful that this process lead me to finding my biological mother, something I have been wanting for years. I am thankful that this process showed me what I wanted to do with my life to help from here forward. Most of all, I am thankful that this year showed me how “there” for me my friends and family were. It is easy to be there for the fun times, but much harder to commit to the hard ones. So to all of you, thank you. Thank you to my amazing husband who has been my rock that I leaned on when things got really difficult. Thank you to my parents who have been there for anything I needed at all, whether it was a fun place for the kids to go while I was hurting or a late night run to Olive Garden for Minestrone soup and breadsticks. No matter how tough the surgeries were, I can look back on this year and feel extremely blessed. Happy Thanksgiving, everyone.

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Hysterectomy

Most of the posts in my blog have to do with the mastectomy I had in July and that seems to have gotten all the attention, but what some don’t realize is women who are BRCA positive have a very high risk of contracting ovarian cancer, which we call the silent killer. It is more popular to talk about breast cancer awareness (hell, we have a whole month of pink ribbons dedicated to it!) but ovarian cancer can be harder to detect and by the time you do catch it, it can be harder to treat. As a woman with a BRCA1 mutation, I have about a 60% chance of getting ovarian cancer in my lifetime if I do nothing and the bad news is, BRCA1 women have a higher likelihood of getting it earlier in life than those with a BRCA2 mutation.

Quite honestly, this surgery scares the hell out of me. The mastectomy, although very difficult physically to recover from, mentally was a breeze. I am done having children. Breasts are cosmetic and serve no purpose at this point for me and, let’s be real, my reconstructed breasts look better than the old ones my children ruined so it was a no brainer. Bye bye, boobies. You won’t have the chance to kill me.

Hysterectomy, although an easier surgery, can have lasting consequences because your hormones are thrown off. As you probably know, when a woman’s body is done releasing eggs, it stops producing estrogen and she goes into menopause. This happens sometime between 50-55 years old. I will be going through it at 34. The good news is, since I don’t have breast tissue that can be effected by hormone replacement (estrogen receptors in breast tumors can make the cancer grow), I will be able to go on an estrogen patch to stave off the menopause until I am in my 50’s. This will not only keep me from having hot flashes and a host of other menopause symptoms (which sound terrible, by the way), but will also protect my bones and heart.

I can’t tell you how many times I have asked my surgeon, “Are you SURE the hormones will keep me from going into menopause?” because the idea of it really does terrify me. I am not ready to feel like an old lady and I am scared of how my body will adjust to different hormone levels (I want to apologize in advance to my wonderful husband for turning into the chick from The Exorcist for a while. Sorry, honey!). No one talks about how hard it can be mentally to do this, either. My husband and I are finished having children, but somehow having even the possibility of it taken away is a little sad.

On the bright side, no more Aunt Flow! And of course, my chance of getting ovarian cancer and also uterine and cervical cancer, will go down to a big fat 0. Even still, I did consider cancelling the surgery until I got closer to 40, which is the recommended limit to do it for BRCA1 women. However, after finding out my medical history from my mother, a couple relatives were diagnosed at 35 and 36. Once I saw that, it sort of made the decision for me.

So, on Monday, November 13th, at 7:30am, I will be having all of my lady parts removed. I know I need to do it, but I somehow have it in my head that this will change me and I am really hoping it doesn’t. I am staying positive and remembering that I know people that have done this and they have turned out fine. Also, the alternative is just waiting for cancer to claim me and we can’t have that.

Mother

So I realize that I am a little late in writing this post, but sometimes life just happens. This has been quite a year, but one thing I was not expecting to happen was meeting my biological mother. It is something I have always wanted to do, but one of those things I thought would never happen because finding her just seemed so impossible as we tried to navigate the New York court system. As I might have mentioned before, I was gifted an Ancestry DNA kit by a good friend before my mastectomy, and long story short, figured out who my mother was.

Our first line of communication was not as I expected, honestly, as she was a little shocked and just wasn’t ready for it. After a few days, we did start talking via email and finally, on October 16, we had the opportunity to meet because of a trip that brought her to Florida.

Before I drove to Vero Beach to meet her, I had at least a person a day asking me if I was nervous and I really wasn’t… until I arrived at her hotel and started walking in. Then my heart was pounding out of my chest. It was just so surreal, walking in to meet this woman who brought me into the world. As is normal, I had that fear that she wouldn’t like me or it would be awkward, but I kept walking and waited in the lobby for her to come find me.

When we saw each other we just started giggling and gave each other a crushing hug. On those reunion tv shows, you see people ugly crying, but it was just so much all we could do was laugh. Once we walked in to have breakfast and sat down, I think we just stared at each other for the first five minutes, looking at similarities. We have the exact same eyes and height and similar mouths. It was crazy to finally meet someone who looked like me and to see where I got some of my physical traits. Once we started talking, I found it interesting that we had similar personalities. I find it fascinating that you can inherit personality traits from a parent, without ever having met them. We are both laid back and soft spoken with a love for sports (hers is rowing).

After breakfast, we walked along the beach and we probably walked for three or four miles because we had so much to talk about. I won’t go into everything we talked about because sometimes it is nice to keep things to yourself, but I will say that it was so cool to hear about her pregnancy and my birth. I think it is something that people take for granted; knowing the story of how they came into the world. I loved that I got those blanks filled in for me. I got to hear all about my half brothers and what she had done with her life and I got to tell her all about my parents. It has also been very important for me to let her know that I respect what she did and have never ever felt resentful for it. I imagine it is extremely difficult to make that choice and I have always wanted to meet her to tell her that she did the right thing, because I have had a wonderful life.

All in all, it really could not have gone better. I think she is the sweetest person and I can’t wait for her to meet my husband, kids and parents. We still talk over email every could days and I can’t wait for our next visit. Some stories of adoption reunions end horribly, but I am so thankful that this story turned out to be so awesome.

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!”

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!

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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.