A post I've been putting off... Life is different ... one year later

  

           This is the picture that hangs on the wall in the Breast Health Clinic... In the room where I suppose some women find themselves (figuratively and literally) and others loose themselves. The picture truly says more then a thousand words and yet none, because sometimes throughout this journey there honestly, have been none...
    My reconstruction was finished in August, 2015 and it went relatively smooth.. for me anyways... still a slight second degree burn on my skin from the glue and antiseptic solution, but nothing compared to everything else I had been through the last six months. The surgery and recovery were easy..... the emotional part... not so much...
    I've written this post over a dozen times, never being able to finish it... nor post it... As I've been struggling with how to navigate my life and my new reality...
   When this all started I knew it was going to be hard, I knew it was going be painful... I knew every detail of the surgery...every cut, disection and speed bump.. I also knew the toll, the appearance of what was left took on every woman I have ever nursed.. I thought I had this... Oh was I wrong.
               I missed the tiny yet big fact that I had only prepared myself for what I knew as a nurse. Not as a woman who had to go home and adjust to this new life and perception of myself. I powered through the mastectomy, I was determined it was not going to affect my everyday life. I was fully aware of the fact, yes I would never have my breasts back, I'd never not have these scars. I also knew it would get better, but would never be the same. What I definitely never anticipated was the grief,  lack of understanding or support. Which is essentially, what has caused the emotional part of this journey to be the hardest....
       The misconception.... This surgery is the same as a boob job and no big deal.... Reality... That could not be farther from the truth. It is nothing like a breast augmentation or enhancement. Nothing from the beginning to the end, as the implant is even different. I've had a lot of surgeries and none have affected myself or family like this one has. I also have never felt more scared or alone then I did strapped to the table awaiting to go under. That hands down was the scariest moment, I have ever had in my life and I was everything but alone. I had an amazing team who were not just a skilled team, but my colleagues and friends. We all knew there was a possibility it was to late, the air in the operating room was somber and guarded even as both Surgeons said "we've got this". As Sam held my hand while I went under we were all a little misty eyed as we all knew this was big, there was no going back and I would be changed both emotionally and physically.
      The misconception.... I now have Perfect Beautiful Fake Breast- The Reality.... I had my chest cut open 3 inches on each side, every part of my breast scraped out leaving nothing but skin. To then be replaced with what can only be described as, torture devises that test every part of you as a woman, mentally and physically. Then to have the implants put in, NEVER with the idea I would have perfect breasts, but instead something to put into a T-shirt and restore the superficial appearance of looking like a woman...
   The misconception.... Having your breasts cut off isn't anything like loosing a finger/toe or limb... The Reality... The grief is every bit as real... If sitting and waiting for, four weeks to see if chemo or radiation is in your future isn't enough.. to go through every emotion of what if you do, too then move to the thought of you've been through the worst of it.. Too then have reconstruction and think literally  " life is going to go back to normal after my surgery." .... Too then have the very large reality check of..       No..        You now have two foreign objects on your chest, no feeling but a constant numb state with shooting nerve pain (that have no tissue around them to soften them- just straight up implants and skin). and that you will never have your breasts back, they're most definitely 100% gone.
         I wouldn't know but I would assume that a standard breast enhancement/augmentation is none of this as you are not loosing anything, or everything... you are gaining and enhancing.... For those of us who have had a mastectomy there is NO enhancing... but there IS gaining... for me/us its gaining life....
    The people.... This has been the biggest struggle, paired with all of the above... The stares in the change room with my children, when we get dressed to go swimming- which I do my best to brush off- but of course notice... I've had to re evaluate relationships and realize that what I perceived as a relationship that would be supportive, kind and understand was only that... My perception. I've had more than a few people step back, walk away or choose to avoid me this past year and at first I was angry...
         I have now realized, you cannot force something that isn't there and it was selfish of myself to hold someone to my perception without considering that it may not be the reality. Most of those who chose to walk away or step back did so after my reconstruction. Why? I'm not sure and it isn't worth chasing an answer in my eyes, if they do not want to have a conversation. Life is to short and I am so blessed with so many amazing people in my life who honestly, stepped up and behind me when I was truly broken, scared and needed support. The hardest part of those who chose to step away was the emotional struggle I was having with the way in which I feel about myself, my appearance and how I felt ( it to me, as silly as it is.... felt as it was a confirmation of everything negative I feeling was, correct).. It is a daily struggle, and I know it will get better and it is,  I will adjust as I have been here before...( having my face ripped off and going from no scars to scars covering every part of your body due to my accident.. Trust me I know.) It's just finding a new norm and not bursting out in tears every time I step in front of a mirror, or put a bathing suit on... I will get there again and it's been a great learning experience for how much I need to let go of the things I can not/ do not control...

     I've had a lot of pivotal moments in my life and have been through a lot but this past year I choose to view as one of the best years of my life in a lot of ways... I've learned so much about others and myself. I know what I want in and out of life! My goals and dreams are bigger and better... Life is Amazing...
   The biggest things I've learned are... You owe no explanation to anyone in regards to how you choose to survive, you truly do not. That family, making a difference and well being are my core values, but yet I choose to sacrifice my well being most, to uphold the other values and need to find a balance. I've learned my marriage can withstand anything and that I truly have found and married not only my best friend but my soul mate ( and until this year I didn't believe in a soul mates). I also learned it truly is about quality over quantity for me and that my little family is enough....

Everyday is a learning experience and I'm in a great place, I choose to look at everything in a positive light and am so very grateful for today, my journey and those I share it with.

        

My Journey ~

 

   There are moments which mark your life.

Moments when you realize nothing will ever be the same

And time is divided into two parts,

Before, this and after

This…..

            There truly are no better words to describe my life this past year and then some… I am nowhere near who I was a year ago… nor is anyone in my family.. My husband and my kids have all been affected and changed as a result of these past six months… July of 2014 marks when the results came in that my MRI results had changed… that if I wanted a prophylactic mastectomy I should do it now, and by now they meant as soon as possible. So in October surgery was scheduled for March…. A lot of waiting ensued…. The surgery day came with more stress and fear then I can put into words… “what if they open me up and not only have the results changed since March but what if  I’m full of cancer.. No one in my family beats cancer.. it is a one way ticket to death…”  “what happens if I don’t make it home to my kids and what if this is more then I, my husband and family can handle..” We got through surgery , spacers… Results that my lymph nodes came back clear and they were positive they removed all and any pre-cancerous tissue. That this wasn’t all for nothing… And now to a few days away from what is hopefully my last surgery ever…..

       These last six months especially have had a lot of ups and downs… Some of which I’m still struggling with…. Most of my fears for this week are superficial but out of my control…. People through these last few months have surprised me, which I really didn’t think was possible with everything I’ve been through…. But people are truly funny… When I was in my accident I had a girl from high school sneak into intensive care just to see what I looked like…. Another who watched Mark carry me into the house, when I first got home. She slammed on her breaks, and actually parked her car in the middle of the road to come running up my steps and barge into my house just to see what my face looked like because she was told it was half ripped off… “Wow I didn’t think you’d look that bad” where her words… I hadn’t even had a chance to see what I looked like as no one in the hospital would give me a mirror…. So really you would think not much would phase me but, yet there is…  I’ve had everything from “ It must be nice to be getting fake Boobs”… ( yes, this whole experience has been an Amazing one and I would recommend.. get all your breast tissue cut out of your chest, have two hard plastic Tupperware containers slammed into your raw chest, not be able to sleep due to being uncomfortable and to deal with the pain I have, all for free fake boobs that are truly fake… will ripple and feel as fake as fake can be…yes it’s so nice. You should totally do that! Plus doctors just give mastectomies out to anyone who asks- fake Boob’s all around!) . I’ve been told I’m selfish for sharing the fact I’m going for surgery on social media and should consider those who have had loved ones who’ve had cancer…. Yes I am selfish, not because I choose to keep those who sincerely (and yes I mean sincerely because I can tell very quickly who isn’t and absolutely hate it when people only do things for face value) care, and live too far away to be here with me informed. If the fact that I am trying my hardest to save my life offends you then please let me show your ass the door… There truly have been all kinds…

     With all kinds of people, there have been those who have been pure blessing and I honestly owe everything too. Of course first and foremost is my husband whom I owe everything too and he knows that….To right after surgery I had the most amazing friends show up to offer support and cannot thank them enough.  Family truly is more than blood and I will never be able to thank them as well as my mother inlaw and sister inlaw enough for being there for me. Offering endless support and dropping everything when I’ve needed…. I had a girlfriend travel two hours just to drop off protein rich snacks and soup, stay ten minutes because she had to get back home, but had to come see me. I had the college deliver a warm meal every night for two weeks. Fruit baskets and flowers from cousins and friends. I had friends drive from all over, rearranging schedules just to let me know they were there for me. Baking and a beautiful bracelet from my mom’s group and so much support from family who so wished they could be here but we have an ocean separating us. The gratitude and appreciation I have for each of those who were there for me and my family is unmeasurable and I hope to one day be able to re pay each of them or at the very least pay it forward…

   With every situation I have encountered though, comes an understanding… Most people’s hearts are in the right place, some just don’t know how to react in situations like mine or what to say or do so as a result they choose to stay away. It doesn’t make them any less important in your life and the reason you have them apart of your life should never be to reap reward or expect something specific out of them as everyone has their own strengths and that is why they are a part of your life for each of their individual traits… It’s instilled my faith in, you should treat everyone with kindness regardless of how they’ve treated you and that this life is the only one we have…. I may have cheated breast cancer, but I went through every fear, up and down possible, the surgery and recovery…..Instead though was so lucky and trust me I know how lucky, my mother is dead… to have had good results and not need any treatment or hear the words “ You have/had cancer” Instead I heard “ the precancerous cells where present, so it’s not, IF you would have gotten cancer, it’s a matter of WHEN, and we feel we couldn’t have left it any longer and gotten the same results”….. Trust me when I tell you, those words are not the easiest to hear either and it screws with your head in ways I can’t explain….

I’m nowhere near the same person I was six months ago, and I assume after Tuesday I’ll change a little bit more.. Emotions are the only thing that we cannot fully control or predict and when your type A it’s slightly stressful. I’m anxious for this week, what will I look like… because as of right now without my pork cutlet as I call it, I look awful. What will my chest feel like, and what if the implants are different sizes just as the spacers appear? I’m stressed for the rude comments and stares, the comments that are not spoken but thought and felt in the way people act around me. So much so that I’ve been fearing I’ve made a mistake having the reconstruction and should have just remained with flaps. The biggest thing I’ve learned though through all of this is to breath, nothing is worth getting to upset over, big things have become less big. Stressors I had pre all of this are no longer stressors and nothing is more important than my amazing little family. I’ve also learned that a lot of peoples actions or lack of is a direct result of their own insecurities and fears, nothing to do with you.. and instead of anger, empathy and understanding follow..

So as I go into Tuesday I cannot thank those who will be with me and have offered their support and help endlessly. To all those who’ve offered support along the way… I truly cannot thank you enough….

My Journey over the past 6 months..

24hrs after surgery... I honestly don't know why I'm smiling.. I had just put that shirt on and my chest was on fire, I felt awful and was using the IV pole for balance.. but I'm smiling...


 Three days after being home, full day spent in emergency and this amazing lady was by my side the entire time. Never once making me feel like I inconvenienced her, which I truly fear.... creating an issue for someone as a result of myself.. this is IV antibiotic round two.. waiting to see if I stop breathing...

My veins as a result of all of the crap running through them and the inability to find a site.. I think we counted 15 attempted starts..






Flatter then my front door and struggling to stand up straight. The kids and I before Easter Service.



Brett and I working and trying to relax after an inflation appointment.


What I look like right now with spacers, which are over sized and uneven, but with my pork cutlet and liner.. we even things out so the illusion that they're not frightening is there....

I’ve never been to hell… but I might equate the last five months to it..

 

                                         

   April 16^th, Marks the first inflation… So let me walk you through it… I have an appointment scheduled within the hospital at Out Patients. I go into a small room, change into a gown and wait…. My plastic surgeon comes in, uses a small magnet to find the inflation port on my chest which is located under the skin and is small disc which is a part of the spacer. He marks the area with a sharpie, uses alcohol to sterilize the area and takes a 14g needle which is full of 50cc of Normal Saline. He puts the needle directly on the mark and inserts in into my chest. After he’s felt the bottom of the spacer with the needle he withdraws a bit and injects the saline.    

    I would equate this experience as not excruciating, but nowhere near comfortable and even though I have no feeling in my skin, my chest hurts after…For my first inflation.. I literally walked in with no chest and left with adolescence teen bobbies.. It was a very strange experience. The first three inflations, which were every week until the first week of June where 100cc in each side of my chest, with each inflation the skin stretched… not evenly and the spacers are industrial and wrinkled…the muscles stretch and rip each week as they’ve been removed from my chest wall and placed over top of my spacers to hold them up. As a result of not having any tissue to hold up my spacers and using muscle, one of my spacers slipped… so I have one breast that in approx. 2inches lower and way bigger… I look like something out of a horror film.

Now we wait for the skin and muscle memory to fade, until I can get these awful things out and have surgery to put in the implants..

Facts~

The Spacers are hard and have no feeling

Ice helps with the pain of inflation but you can’t tell when your burning your skin, do not use an ice pack but one ice cube at a time as it will melt before it burns you.

Being over inflated makes me feel semi like I am out of an adult movie

People will say and do things you can only shake your head at.

Spacers won’t be the same size.. Getting dressed is a HUGE struggle… find a breast pad that is foam, the silicone ones are meant to mold into the breast tissue… You have Tupperware containers, there is no molding into. Find a foam pad and use your arts and craft skills to custom it to match the lager side, and use a liner from a bathing suit to cover the other nipple…

No feeling and Rocks that don’t move = no issues jumping up and down and easy entry into the cold lake.

Forget golf…. ( Thank god I didn’t play pre surgery) there is no swinging going on once over inflated…these puppies really don’t move.

Moisturize moisturize moisturize!  And massage your skin and muscles, even though it may be uncomfortable it will make the next inflation bearable…

Never be ashamed of a scar. It simply means you were stronger than whatever tried to hurt you..~ Unknown ... Facts and where I am today

The Facts...
I had Surgery on March 17th, 2015. A bilateral Masectomy... I went through Day Surgery, had my IV started antibiotics given, got into my gown and waited. I was then taken into pre op hold, both of my surgeons came out, I was undressed, marked and we went over the procedure. I was then assured they would take good care of me, I met with the anesthetist . Was wheeled into the OR room strapped to the table and awoke in recovery. Which I have no recollection of. During the surgery my tissues were " a mess" and it took longer then they assumed it would. I went under at approx. 1345 and was wheeled into my room at approx. 1830. "a mess" translates to possibly/more then likely contained cancer cells and as a result they took lymph nodes from each side of my chest to test. With that though they are hopeful and are confident the lymph nodes will come back clear.... So was the procedure Prophylactic..... sort of, maybe,  not really... at this point we sit and wait.
All tissue was removed and Hard/Large spacers were put in place. along with two JP drains.
 I was wheeled into my room and as with every surgery I get extremely sick with anesthetic... I was also in a lot of pain.. Surgery on your chest makes even breathing hurt. I was able to keep my nipples and was able to look at my incisions right away, and as is the same as with every patient I broke... What was once a part of me was now gone and I resembled anything but a female.. During the night and into the morning while off of the oxygen my Flaps ( where I use to have breasts) turned grey and dusky which is the first indication that the graph/flap is not taking/not healing or utilizing the blood supply. I was kept in for another night and during my stay ended up with a reaction to the glue they used to close my incision. On top of reacting I also reacted to the cortisone cream used to treat the reaction which ended up in second degree burns and a lot of blisters.
A week after surgery the two drains I had were removed. two days later I ended up with a lot of fluid build up, and an infection. The worst of it though was the inability to breath. I couldn't say two words without gasping for air.. I was put on an antibiotic that I potentially could react to... as I'm allergic to a sister drug.. I ended up on IV antibiotic treatment 3 times a day for four days.
Since then things have finally started to heal and I start my first bout of inflation this week.

Pain:
If I was to do this again.... honestly I don't know that I would have the spacers put in.... just take my breasts... It feels like I have two hard pieces of plastic gammed in between my ribs.. Sneezing and coughing are enough to bring me to tears and sleep ing still not happening as the spacers move... I am a side sleeper. When I lay on my side, they move closer together which makes my sternum feel like it is cracking in two. I've had broken ribs and I would have to say that this is comparable.... I have no feeling in any of my breasts, they now feel like I have two foreign pieces that are not apart of me, sitting on my chest. My nipples are now just objects... and although they may gain some sensation back its unlikely.

Emotions:
 I'm all over the place.. Getting dressed every morning is a struggle... there is absolutely nothing there... I worry about what people think when they look at me... Scars on my face....legs and now this...  I wonder what they will think after each expansion and reconstruction... I worry about what I will look like and what they will feel like... If I will feel like I have two objects that are not apart of me forever... Will I ever feel confident again.... all of which is superficial.... but non of the less are on my mind... My thought process as to where pathology is what it will entail has my emotions all over the place... I also feel like I've cheated in a sense as I watch friends going through chemo... that I some how took the easy way out.... My family as a whole  has changed, its all been a process and even though the kids never once seen me in the hospital they're still very concerned and carful around me... Brett is extremely concerned where I am at all times and  Laken's constantly asking if I'm ok... This last week I've finally started to feel human in my own skin and not as self conscious..it is what it is and I am ready to move forward... I can't explain how amazing Mark has been, never missing a beat to tell me how much he loves me, that I'm beautiful, empathize with me and genuinely comfort me... I'm healing and most days I'm happy.... very thankful and grateful for the amount of love and support I have all around me..

Things I've learned....
     People will say and do things out of spite, even through something like this... Those who you thought would be there in some capacity... even to just say hi... sometimes aren't.. and some people cease an opportunity to kick others when down... don't focus on those people though as most of what others do is a direct reflection of themselves not you.... Along with there are far more Amazing and Wonderful people then you could have ever imagined.  Child proof medication bottles are not your friend... Sneezing and coughing feels like your being shot in the chest... Hiding JP drains is a talent.... Sleeping is in intervals no were near consistent.... Having children and a mastectomy at the same time does not allow you to follow all of the rules, all of the time... Seatbelts are also not your friend... and pre cut breast holes in tops were created by who?? Because they don't fit on the best of days, never mind when you have nothing to put in them.... Baths and Vitamin E ointment will be your best friends... Loose fitting sports bras are the way to go, with a wide soft band... as it helps the spacers stay in place and gives some relief during sleeping.. Breasts are an amazing insulator and your chest is now going to freeze... so stock up on scarfs and nice sweaters. Unless its plus 30 then you'll be ahead of the game and lacking in cleavage sweat.. Ha!

Where I am right now...
  I'm good, I feel good.... Minus the pain which is still quite intense at times. My mind is still constantly wandering to what my results will entail even though I trust my surgeons and their instincts... Getting dressed is getting easier and feeling ok in my own skin is coming back. I'm worried that will change this Thursday when they start phase one of inflating the spacers. I'm also anxious to discuss the reconstruction as there hasn't been any conversation really in that regard... It was a rush to get them off... I'm also anxious to not be in pain any more and back to my full self but know these things cannot be rushed.... Though despite knowing this..... I'm struggling to not rush myself.. My fears of  this changing my marriage have been diminished and I once again am reminded of the amazing man I married.  I still am on an up hill climb and there I 'm sure will be a few twists and turns ahead as there always is... but I'm am beyond confident I've got this.... and I've got this because of the amazing support system I have..

“When I was a boy and I would see scary things in the news, my mother would say to me, "Look for the helpers. You will always find people who are helping.” ~ Mr. Rogers

       I've been though a lot.... and when I mean a lot... I grew up never living under my own roof... always bounced between everyone else's home... then when I was old enough to stay home the physical and emotional abuse was too much and I guess since home was never really home it made leaving at 15 to work 3 jobs, volunteer with coaching soccer, teaching sparks and with recreation at the old age home all the while finishing High School and graduating with two scholarships... More within my own reach then others would maybe be able to see... I could see it because I was in charge... Then of course, an accident.. having to with draw from school... learning after two years to walk again.. a few surgeries and then re-enrolling in school, watching my mom die and finishing school all within the same year. I've been through the surgery thing.... I have a mental routine, I know the procedure, the nurses and everything I could possibly expect to go right/wrong and side ways and how to deal with each.... I have a plan, a routine and then we get on with life, its nothing new.. it just is.. It affects us for a while and then we move on.... I've adapted and become very good at it..
       This entire experience has been nothing like anything I have ever gone through before and I truly couldn't have anticipated any of it.... There have truly been so many ups and downs... right and left turns....a lot of it felt like hell... and then a lot of it left me in Awe of how many Amazing people I have in my life..
    Surgery went well, I was bumped and had to wait, which meant Mark couldn't be with me before I went in but it did allow me to take Laken to school and Brett to the dayhome.. and then came a lot of waiting... but as I was awaiting in Pre op hold and waiting to go in I was greeted by the most beautiful friend who made a humiliating surgery prep, (only because I know everyone who was seeing me at my most vulnerable stage..) A friend who not only came out to wheel me into my OR but held my hand until I went under and reassured me one last time everything was going to be ok..( she will never truly know how much I needed that or appreciated her support and love as I drifted off into the unknown..)  I was able to keep my nipples and the scars will be minimal... My chest looks like something from a bad horror film and the pain has been hard to bear at times..
   As well as the surgery went I awoke with a reaction,  a lot of support, hugs, help and love... Along with some not so nice comments and expressed feelings.... I  had help I could have never imagined and then as always as we all have at times the disappointment of those who I thought would be there and weren't... and I'll be honest, the hurtful comments and assumptions I awoke to right after surgery, took there toll and I broke a little..... taking in my new appearance and reality... along with news the tissues where a mess and they were unsure what pathology of my lymph nodes will say, for a moment it all got the best of me... and for that I am grateful beyond words for the Amazing people in my life...
    The most over whelming about this entire experience has been the amount of support and help... Never in my life have I ever experienced people being soo kind, loving and above and beyond amazing..... I had friends take time out of their very busy schedules to drive two hours to bring me healthy treats, friends who texted and called, sent fruit and flower, the College sent home cooked meals for two weeks in a row, friends sent meals, other co workers from the hospital, ... My sister in law drove two hours to pick up my kids and my mother in law took them after surgery and when things went wrong...Friends who have called regularly or made a trip in with a bottle of wine and a comforting ear, hug and smile...  I truly have thee most amazing friends and extended family anyone could ask for... Which I've known the entire time, but have honestly been overwhelmed as I have never in my life experienced so much support and it took both Mark and I by surprise and left us in awe....
   Thankyou doesn't begin to even come close to how much everything everyone has done from us, and I honestly have guilt as I feel I could never repay the amount or wealth I have experienced in the past few weeks.. I will be forever grateful and promise to pay it forward..

My Children~ Pre Surgery

 

Dear Laken and Brett

    Sometimes life throws you what I like to call "Hiccups.." now you always have a choice as to how you deal with these hiccups.... you can hold your breath... wait for them to go away... you can try and have someone help you to get them to go away... you can get soo busy doing something else you can forget you even have a hiccup and by the time you remember they are gone.. or of course you can pull out a chair stand on top of it, lift one leg and sing Mary had a little Lamb.... How ever you choose to deal with your Hiccup is your decision and yours alone.. Please don't forget that..
   I've been dealt a few Hiccups.... some being surgeries... 12 soon to be 13 to be exact... and yes this too as always, I had a choice as to how I felt the need to deal with my hiccup.... I had a conversation once... with my mom and it was the start of the end... I remember it word for word..." Hi Ashley, it's mom... when will you be in town next? I have something to tell you"..." Hi mom, I don't know when I'll be in town, just tell me now".. " no I want to tell you in person..." "Mom I know what your going to tell me, your going to tell me you have Cancer...." and just as easy as it rolled off my tongue, the silence on the phone was deafening...
 I chose to not have that be a hiccup I had to deal with now... not because of breast cancer.... I was going to do something... and that is what we've talked a lot about over the last few weeks.... I'm going for surgery to try and make sure what made Grandma Anne, Nanna Mcshannon, Great Grandma Agnes and all her siblings... sick, not make Mommy sick. We've talked about where I'll be sore, which drains I'll come home with and how I want to be with you for a very very long time....
    I know this surgery is going to change you as much as it will me.... I know that no matter how strong of a front I put up you will know your mommy is sad, hurting and maybe even scared... That is what I wish I could shelter you from.. and although I know its good for children to see that we are all human. I fear one day you will see me break and as ok as that may sound for some.... I watched my own Mother break over and over again and am permanently scared from it, I can relive each moment of fear and helplessness that I never want to bestow on my children....
    For that reason my dear Children you will not have any memory of seeing me in the hospital... hopefully it will only be one night and in the morning I will be there to shower you with kisses, a few pounds lighter, a few extra tubes and a little sore... I have every childhood memory paired with seeing my mom in the hospital with crohn's disease and or depression... and even though my reasons for being in the hospital are completely different it's a memory I don't want you to have... and I know you'll never fully understand but I ask you trust in me that I as I know deep down my mother was only trying to do the same... She was trying to do the best she could with what she knew...
     What I hope you remember from all of this... is minimal... I hope its a hiccup in your daily routine that you can barley remember and that we have jam packed so many new memories into your tiny little heads and huge hearts that its a vague after thought...
    Regardless of how these next few weeks turn out what I want most is for you, to know how much I love you, how proud of you I am and my greatest wish in Life for you is that you find Happiness.... Because you'll find out that the secret to Life isn't the years, the money, the career... its Happiness, when you have found what makes you Happy you have found success.

Love you Always and Forever and ever..
Mommy...

One Week...

 

 

 One week tomorrow is the day in which I go in for my bilateral mastectomy. March 17th, 2015....Time has both sped up and slowed down....

The last two weeks have been full of pre op appointments, blood work.. etc... Working double shifts, dates with kids, regular life, hockey, swimming, volunteering twice a week at Laken's school, organizing.. trying to control the un controllable, moments of calm, nervousness.. defeat and uncertainty combined with.. I've got this..  

  For those who know me I'm type A in every aspect... I come by it honestly as there was never any order to my life growing up... I never knew if it would be my mom picking me up for school or someone else because my mom was in the hospital due to her depression... So I learned early to control and plan for what I could... how to always have stuff pre packed if we weren't living at home for the week... the way I could put my stuff away and organize what was mine.. How to have a plan to control plan A/B/C and D just incase someone jumped from one plan to the next...  I find as I get older and now with kids, its getting worse.. or as I like to think its getting perfected... lol
   The truth is I never ever want my children to have the sense of absolutely no control... I never want them to stress as to where I will be at night, where they will be and what is happening from one day to the next.. so of course my kids live in the extreme of everything planned, sought out well in advance and then of course planned from there... That is were most if not all my anxiety lies this week... My kids and the possibility that if something doesn't go exactly to plan they might for a second experience the anxiety and sadness that was my childhood.  My greatest fears don't lie in if I can do this... If I'll manage or how I'll manage... For I know I just will.. I always do. My fears lie in the few hours I'll be away. The fear they may have seeing me in not the greatest shape physically and depending on how I emotionally deal with everything possibly a little broken.... and I know that there are lessons in that too... I don't need to be reminded... But as a mom it is built into to us to protect our children from as much pain and heartache as possible.... I'm not going to be able to steer them clear of it all but I'd like too... We all would.... At the end of the day though... I am doing this to steer them clear of having to sit in a cold hospital room.. Trying to escape the reality that the present moments are the last that they'll spend with their mom and what it feels like to lay one last kiss as the last breath escapes my mouth... That is what my goal is in all of this... To not have my children long for me to be at all those milestone moments.... because I'll be there in full form, hugging, kissing  and telling them how proud I am of them and how much I love them. This is all and has been from the start 100% about them, and ensuring I'm here as long as possible...
     Now what if it doesn't work...... What if they open me up and my MRI results not only changed but changed for the worse since my last MRI? What if I am in the 3% where I still get Breast Cancer...What if I get cancer somewhere else? What if I was never going to get breast cancer? What if......
    What if I get hit by a bus? The what if's are valid and at the end of the day I've still reduced my risks.. If I am in the 3% and do get breast cancer because of the tiny bit of tissue left... I'll know before anyone else ever would. Due to the fact there is no breast tissue left. I will be able to detect it before it can even be staged and is smaller then a pan tip.. If they open me up and it becomes not prophylactic... I am still ahead of the game and  if I get cancer somewhere else... I made a sincere effort to prevent one type and will deal with it... The possibility that I may never get Cancer is there... but with being the only surviving female from my moms side I feel the odds are not in my favor and have full faith in my doctors their interpretations of my scans, tests and overall health...
  So here goes the next week jam packed as full as I can get it ... and trying not to let this cold get the best of me... from some rest,,, kids play dates, work, planning a 3rd birthday party, more work.. quality time with my kids, hockey, swimming and of course life and everything that comes with it... Up's, downs and all the sideways stuff.... I'm 50% Scottish and 50% Finnish but here is hoping I get some Irish love and luck next week and that is follows through as we move forward into the next stages of this journey..

So Many things to be grateful for..

    February 17^th, 2015 marked one month until I go under the knife… and as much as I’ve talked about the fact I’m nervous and slightly apprehensive about the very quickly approaching date… I know I’ve got this… I’ve started my pre op appt.’s and blood work which will continue into the following weeks. I am ensuring my Hemoglobin levels are where they should be and that I am not anemic.  That the rest of my blood levels are within normal ranges. That my body is as healthy as possible and I am really trying to lessen my stress level and get a bit more sleep, to ensure I’m going into this as best prepared as I can be.

      I’m spending this week spending as much time with my kids as possible, prepping things that I know I won’t be able to get too, after surgery… Items I want moved, cleaned and lifted…. shaving the dog… ect. I plan to make more freezer meals, prep our calendars plan for the unexpected and then some… Laken has helped me set aside a stool for the jeep which will allow Brett to get in and out without me lifting her… Along with Laken when he has all his hockey gear, which he has proudly shown me how well it will work. He’s also demonstrated how he can climb the counters…. Not so great…

   I truly feel blessed that I have an opportunity to possibly change my future. One that I know would have changed my grandmothers. To have been born in an era where this is available to me, where it is an open discussion between my doctors and I and that it wasn’t my only option to choose from.  I am blessed. I am blessed with friends and family who have been there for wine nights and just to chat with…. Those who have understood when I’ve felt like I haven’t been there for them or lacking in the friend department as I navigate through my crazy life… They’ve been there to share in my frustrations of those who somehow feel this is in some way about them and give me the extra push of support when they can tell I’ve needed it.

    Most of all I am blessed with an Amazing husband…. When Mark and I started dating 14 years ago, we were young… really young. Never in our wildest dreams did we realize that our relationship would endure so much. I am so grateful that I knew what I had when I found it.. That for all of the critics who were concerned that even though we had dated for 5 years, been through a horrible accident, two years in a wheel chair, a moments full of some of the hardest ups and downs… Even though we were so young, we knew what we wanted out of a marriage, we knew what page we were both on in regards to where we thought our goals were together, and as individuals. We knew it was going to be work and that marriage was going to require work…. Did we envision the number of ups and downs our 14 year relationship and 9 years of marriage has brought us? No… but who does or has?  If I can offer my children anything in the advice of Marriage, it is… find your best friend…. Someone who can make you laugh and mad all at the same time.. Someone who is your equal and is always willing to put in just as much work as you. Someone who will pick up your slack when you are tired without being resentful, because they know you’ll do the same.

            Mark always goes above and beyond. As a best friend, a husband and a father. He is my other half and I know if I can’t do something or am falling behind he’s right there behind me, not needing to ask what it is he can do, he just does it because he already knows… He knows what has to be done and how I would have done it… That’s where I feel the most blessed.. For I know it’s not just me that has this but, WE have this, and no matter how this goes… We’ve got this.

       Below is a brief pre op video explaining some of my options. Those options that are out there and the great message that things are always changing…. Due to the risk of the losing my flap after the mastectomy due to the large list of possible risks and complications. Along with the fact the only specialized surgeon who is well experienced in my and my surgeon’s eyes is not taking patients currently. I have opted for spacers and although it’ll be a flat summer… lol  I am hopeful by August I will be able to go in for Day surgery to have my reconstruction done.

https://www.youtube.com/watch?v=BiSL8E6Sckc

 

http://blog.thebreastcancersite.com/breastreconstructionanimation/?utm_source=social&utm_medium=bcsfan&utm_campaign=breastreconstructionanimation&utm_term=20150217

What it is I am having done~

    

What it is I am having done….

 

http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-treating-surgery

 I will have both of my Breasts removed.. The difference between this picture and my surgery is I will be able to hopefully keep my nipple, and my incision will be slightly different…

 Why am I having it done…. To avoid this….

 http://www.activebeat.com/your-health/women/10-life-saving-metastatic-breast-cancer-facts/

 

 What my incision will look like… The Reduction incision… Why my surgeon chose this..

 

http://www.breastcancerupdate.com/miamiconference2002/program_agenda_FD_A_SA.htm

The nice thing about being a surgical nurse, is knowing what the incisions will look like, which ones work best and having the knowledge base to feel 100% confident in my choice of General and Plastic surgeon. The Reduction incision is a nipple sparing incision. It follows the natural fall of the breast creases… The goal is to leave me after the reconstruction with the appearance that nothing happened.

 

They remove all my Breast Tissue and then… The put in the spacers...

 

 

http://bertalippert.com/my-breast-reconstruction-journey-phase-one-tissue-expanders/

 

Tissue expanders will be inserted, behind my muscle,  ( as all other tissue will be removed) and if needed they may be removing muscle from under my arms/back to assist in holding up the implant.. The plastic surgeon will insert the spacer and place 100cc of normal saline in each ( which is a very small amount that will not be visible). The spacers will then be accessed once my tissue and skin has healed. 

Drains…

 

http://ww5.komen.org/BreastCancer/MastectomyTheSurgicalProcedure.html

Surgeons use JP drains or hemovac’s to remove fluid and blood. This reduces the formation of hematomas and infection. They are drained throughout the day and removed after about a week. I will have any were from 1-4. Given my small size I will more then likely only have two. one on each side of my chest. 

 

A few weeks after Surgery and for the next three – four months…

 

 

http://www.curediva.com/blog/blog-homepage/expanding-the-situation/

http://cureaging.org/a6/c,k/videolist/mastectomy+reconstruction+surgery,0

This is what my family’s summer will consist appointments..... Appointments where I will have my spacers inflated and where a lot of my guilt lies… I wish I was confident enough to just say.. to hell with the breasts.. who needs them… Have the mastectomy and not cause anymore disruption in our lives.. our summer..... but I’m not… I am full of scares.. From head to toe and I just can’t add two more to my 10 scars and feel any type of confidence.. I hate them, they make me feel ugly, insecure and I want my breasts.. As superficial and silly as some make think. I’ve given up a lot and my body shows just that.. These I want to have and feel they are apart of me feeling like a woman…

Post Surgery~ I will be unable to lift anything over 10lbs for 6 weeks, and then approximately 3 weeks post reconstruction. The hope is that during the initial surgery all tissue is healthy, nothing has changed since my MRI. That I do not get an infection or hematoma forms. That the skin flaps heal and the spacers inflate with no issues. Then the reconstruction occurs with no infection or complications.

It’ll be a long road and one that I’m ready to put behind me but I am certain I am in the best of hands… This next month is full of pre-op appointments, blood work and tests… Then it’ll be surgery…. and I've got this... This is where I change my ending...

 

  

 

 

 

Where I'm at today....

“How are you doing?”….  Four little words that I’ve struggled with since my mom got sick… and for those who know me well. Those are the words in which cause me to break and I go through periods of time where I have to tell people… “I’m fine as long as you don’t ask me that question…..”

Those four little words for me asked by those who I know genuinely care result in the flood gates opening and the feeling of I’ve got it under control vanishes just as quickly… I’ve created a system…. I can hold it together, get through the hard stuff. Be there for everyone that needs me, pack my plate full, re rout where my mind is and carry on as long as those words do not crop up… from those who sincerely mean them..

  When I feel I have time to talk, need to break, take a breath and sometimes just need to let the flood gates flow.. I pick up the phone and am lucky enough to have those in my life who by now know, through the countless ups/downs… and sound in my voice when I need to break…

 

When my Mom became sick… I of course went through all of the stages of grief…. More than once as I knew in the beginning as a result of having a nursing background exactly how my mom’s story was going to go… I essentially started grieving her death a week into her diagnosis. The hardest thing I struggled with was the superficial norm we in our culture insist on practicing… and it stems from the question… “How are you doing?” we are trained to ask the question… It is in our blood…  When someone who’s suffered a loss.. regardless of how well you know them you ask… if someone is sick you ask…etc. The issue I have is, the majority of people ask, because they feel obligated… They really don’t want to hear… “My day was awful, I’m struggling with the realization I’m about lose my mom and am scared beyond belief.” They want to hear “I’m good/I’m ok”… and then be told “thank you so much for asking….”  I get that no one knows what to say… but when you’re going through really hard stuff… Wasted breath to answer superficial questions are hard, especially when they are during the most awkward times.. Like at or during work when I’m arms deep in a patient.. During my children’s activates…. Places not meant for me to bear my soul and really tell you how I’m doing…. It’s really easy to tell who asks sincerely and who asks out of obligation and sometimes it’s harder to brush off then others….

       This is where I’m at right now… somewhere in between being able to answer those four little words and mostly not….. That’s because I’m struggling…. I’m struggling with the risks associated with what I’m doing…. The anxiety that this is all coming so quickly and I don’t have time for anything to go wrong.. I’m struggling with the ignorance of some people and the fact that my kids are at the other end of all of this, as it’s something we will all be going through not just me… I’m struggling with the fact I know it’s going to hurt and that the incisions are awful … I’m struggling with feeling alone.. Even though my mom wasn’t a great source of support I still really want to hear her voice tell me it’ll be ok… that even though I’ve planned and planned and organized beyond belief.. What happens if I can’t do it on my own.. What happens if there is a complication… I’m struggling right now mostly because I am scared.. I’m a nurse, a surgical nurse who sees when this surgery goes really well and really bad… I know what it’s like to have someone’s heart stop and be on the other end of restarting it… I’m present for the emotional roller coaster of women seeing their incisions from a mastectomy and no matter how prepared it’s always a roller coaster… I’m scared because there is absolutely no one who knows what I am going through…. or can fully relate… That in between every play date, school parent council meeting, work, hockey, swimming and helping with others schedules, demands of life and everyone else’s plans for the future.. The struggle with all of the what if’s.. and even though I’m determined everything will go fine and I’ve planned for everything… I’m still struggling a bit…

   I have so much to be thankful for and am so blessed to know I’m in the best hands. I not only have great health care professionals looking after me, but most of them are my close friends. I’ve got an amazing husband who I know will have everything covered and taken care of, down to shaped sandwiches and curled pigtails.. I know because he’s done it every time.. with out question and anything in return.. I am so lucky to have him by my side and the reason I know this too will be ok….

 

Mommy's Going for Surgery...

Mommy’s going for surgery…

 I’ve started to talk with our kids about my up coming surgery. Which I know a lot of people don’t agree with how I’m going about it but, if they haven’t realized yet… I don’t really care… Each parent knows their own child.. Every child is different.. and therefore you should do what is best for your child.  I am a nurse, I have the knowledge to inform my children correctly at their level and answer most if not all of their questions with factual based answers and rational… I don’t believe in lying to my children but that doesn’t mean I tell them everything either.. I feel that once you lie to a child who is curious you end up wasting an educational opportunity and end up causing yourself the stress of creating a lot more lies.. I’ve told Laken that mommy has to go in for another surgery ( as it’s not a new thing in our house, nor is it scary). I casually asked Laken while we were coloring if he knew I was going for surgery to his reply "of course" he said he “suspected it as he had heard me on the phone with the doctor” (just shows they hear a lot more then we think as he has never been in the room while I’ve been on the phone) I explained to him that he knew he had a grandma Anne who he’s never met, who had gotten sick and is now in heaven.. He said he knew as we go to visit the cemetery and talk about her lots.. I then explained to him that the reason I was having my surgery was to try and ensure I don’t get sick. So that I can live a really long time and get to meet my grandkids… Laken responded with “ that’s a great idea you’re going to love my kids.” We talked about how just like when I had Brett I was going to spend the night at the hospital and would be home the next day, but if I had to spend more than one day that was ok too.. We also talked about the fact I was going to have some incisions on my chest and some funny balls that were drains. That I might be really sore so cuddles would have to be gentle and on the couch. Laken is very inquisitive and thoughtful, asked if he could see my drains and could help me if I needed.. He’s asked some great questions, voiced some concerns.. Thought ahead to suggesting we put a stool in the jeep for Brett because I won’t be able to lift her in or himself when he has his hockey gear on already…  He’s asked how incisions get on the skin and what the doctor uses to close the skin..... And I’ve told him exactly how… now magic dust and a wave of a wand… surgical tools and sutures… I feel I’ve prepared my children for an open conversation in regards to what is planned for March and I feel as a result they will be less traumatized than if I were to tell them I was I was just going in to have an Ouchy fixed or nothing at all… This is how I chose to approach it with my children and it’s not going to be right for everyone..... but I hope years down the road when and if Laken and Brett are reading this they appreciate the fact Mark and I chose to be open and honest…

 

 

 

 

Where I am now... What the next two moths look like...

   I'm scared... truthfully that is were I am right now... scared and disappointed what I am going through isn't easy to explain to others....Disappointed some people really don't stop to think before they say or do things as this isn't something light.... I'm scared because this will be surgery 13/14 for me... I'm a nurse... and am well aware with every surgery and intubation your risks increase... I'm a nurse.. I probably have MRSA or VRE and could very well get a super infection.... something could go wrong and I chose to do this... something could go really wrong... I am having my breasts cut off.... They are going to try and save my nipple... but my breasts will be cut down the center and under the skin fold... I will be left with one of thee worst looking incisions post op... I know because I see them regularly.... and the shock on every patients face is the same...utter horror... as it isn't something you can prepare anyone for.... I will have my and my families entire summer revolving around having my spacers inflated.... I will have a needle and saline injected into the spacers to stretch my skin... every week... I will spend my summer with no breasts.... which means no swim suites, no bra's that are not compression bra's. No cute shirts... no summer tank tops and a lot of insecurity... I'm angry with myself that these are even thoughts...... when some people who are dying of cancer would give anything to have these things as their only concerns..... I'm nervous that I will be out of lifting anything for 6 weeks and I have children and students counting on me..... I'm stressed that there is always the possibility of complications and I do not have time for complications... no one does... I'm also embarrassed .....  embarrassed because people are feeling sorry for me and that is not what I am looking for or wanting... I am soo blessed to not have cancer, to be able to be in control and change my story... the rest of what I am going though is trivial to all of those actually fighting this horrible disease... back to scared that March is 2 months away....and that although I've been though a lot and am sure I've got this too... what happens if I'm not.....
Thank the heaven's above for my finish blood though and the gift of sisu as I know I wasn't born to not be ok... this too will pass.... and as always I and my amazing support system will be here to ensure I do...
   As we look forward into 2015 I know this year will have its challenges but in the end it will be so very worth it. With each challenge this year will bring soo much goodness, great things are going to happen! I can feel it! So January and February will be focused on my little family... no wasted energy on anyone or anything that doesn't reciprocate...

My Reasons...

  Shortly after my mom died I had a co worker ask me if I would have children knowing my family history... It was the first time I really even thought of it in the sense of... should I knowingly have children knowing that I might not live a long life?....That they too may have the same fait because I passed along a gene.....It struck a chord... and I spent a while soul searching.... when I came to the realization that... I could be hit by a bus... I could be in another accident, lightning could strike me down.... and I could die young completely unrelated to anything to do with cancer... or I could live until I was 100... I could do everything in my power to try stop myself from getting cancer and still get it... I could do nothing and never get cancer... I could have a bilateral mastectomy and get bone cancer due to my increased risk from my accident... or I could never ever hear the dx. of the dreaded C word...
   The geneticist I had the privilege of dealing with where very helpful in discussing my family tree or now lack there of... I am the only female left on my mothers side of the family tree with comparable genetics.... which was pretty grim to hear... I have no one else who has my genetic markers who is female and there for had no one who was compatible to test for me ( testing in Scotland is much more easily accessed compared to here where it is not accessed unless you pay the USA to test you)...  Even my Mothers only female cousin couldn't be matched to me.... They explained that, that too was a saving grace as in...If my  Grandmother was  BRCA1 and BRCA2 positive  ( the only way for us to know would be to test her, which we cannot) she would be 100%.. my mothers risk would be 50% as she would have her dads genes and her mothers...Myself 25%.... and my daughter if I had one even less..... They also explained that due to the fact breast cancer is one of the most treatable cancers now, especially with pre testing and early diagnosis, if you know your risk factors. Knowing this I wouldn't be placing any child at an increased risk.... So I had my babies... and one of which is a beautiful little girl... knowing full well I may have passed on a cancer gene and a bad cow lick....
      Of course my children play a factor in my choice to go ahead with the bilateral mastectomy... They factor into everything I do... I want to be here to see them grow and never want to have them experience the heart ache of loosing a parent so young... I want to be at their graduations, weddings and at every milestone of my grandchildren... and because of them and so many other reasons given speaking with my doctors  have decided to go ahead with a Bilateral Mastectomy.
   With the options I was given, having yearly MRI's and checkups was a much less invasive choice and was definitely an option for me though after talking with my husband though and a lot of time to think... it wasn't what was best for me. The amount I went through this year, the stress of the MRI along with waiting and holding my breath.... It was not something I wanted to go through every year... essentially to wait for the other foot to drop. I am a worrier, and I don't do well with things I cannot control. So for me, having a year of my life being flipped upside down and reducing my risks to approximately 3% and a huge advantage in very very early detection if I was to fall into the 3%. Avoiding the yearly stress of MRI's and screening appointments. I made the conscious decision that having a bilateral mastectomy was best for me. One year of my life, to give the rest of my years to my family.
  I am confident in my decision... which doesn't mean I am not scared as hell and nervous for what this year will bring but I truly feel. This is my best chance at living a long life not worrying the dreaded C word is around every appointment..