Tuesday, April 7, 2015

Trying to Find the Right Words...


    It's been a little over three weeks since I found out about a friends diagnosis with lung cancer. Three weeks and I still cannot seem to spit it out. I can't seem to catch the words that coincide with the feeling in my heart. Three weeks and I still am trying to catch my own breath. I know, that sounds completely insane...why do we care about how *I* feel, when I wasn't the one diagnosed? Unfortunately, often when people we love are diagnosed with cancer...we tend to express our own feelings. I am not saying I am dismissing her feelings. I am still trying to figure out what, exactly, she is feeling. I won't truly know though...no one REALLY knows what someone with cancer is feeling unless they have been in that persons shoes (and not everyone with a cancer dx feels the exact same either).

  With that being said, I cannot share what HER feelings are...I can only try to express my own, but first I need to provide a bit of a back story...

   I met Leanna in an amazing support page on Facebook, (Young Previvors) shortly after my first appointment with the geneticist. I requested to join "YP" when I decided that wanted to go through with my own prophylactic bilateral mastectomy. At that point, YP was still growing, not nearly as large as it is now. Leanna was one of my first Previvor friends, having already gone through her preventative surgeries. Since joining a few similar communities, I've met a number of women that I now consider close friends...many of which I've not even had the chance to meet face to face. There is a bond though, unlike anything I can describe...it's a bond of mutual understanding. Mutual fear, hope, strength, weakness, pain, etc...all combined into one.

   I guess, in the back of my mind, I knew something could eventually happen to one of my friends. I guess I knew that there is always a chance...no matter what surgeries someone with a genetic mutation (or hereditary predisposition to cancer) has...there is always that scary realization that SOMETHING can still happen. It's a sobering reality for many of us...it's a constant fear. At least for me, no matter what surgery I have, I still FEAR cancer. I have been around it for years...it's almost a part of me...something expected in my world. There is always that chance...

  And then that word comes in...like a wave..."UNFAIR". Of course, cancer isn't fair. But, damn it...why does it have to be so unfair? Why does my friend have to go through this, after everything she did to prevent cancer? Why the hell haven't we figured this all out yet?

  I am scared. I am scared for my friend. I am scared for all of my friends. I am scared for myself and my children. I hate cancer. I hate that my world is surrounded by it...I hate that I won't ever escape it. And, whats worse, I have allowed myself to love these women. I allowed myself to make friends with women that I know are like myself...I allowed more heartbreak in my world and the crazy thing is, as bad as it hurts to watch my friends go through this, I wouldn't change being in their lives. I can hide, try to pretend like this doesn't exist...but it does, and it's a very real part of my life.

  And then it hits, Leanna is the first close friend, since my Mom's death, that has been diagnosed with cancer. I have friends that were diagnosed previous...but, since her death, Leanna is the first and I am scared. I am scared to lose anyone. I hang on to people...because I am so afraid they can be taken away from me. Life is so delicate. Leanna is a fighter...and my heart is beside her in this, just as much as many others are too.

   So, my dear friend, if you make it this far into this blog post...I want you to know one thing. As I breathe, I hope. I hope you show cancer who is boss. I hope you feel fight even on the hard days. I hope you know you have friends that are here for you, even when you feel like the universe is against you. I hope you keep that smile. I hope you keep that light in your eyes. I hope that you know you are so very loved. I hope you kick the shit out of this.

(For anyone wanting to follow my friends journey, you can find her at Andthisizmylife)



Tuesday, May 6, 2014

My One Year....My "Alive Day"

  One of my husbands very dear childhood friends is in a documentary called "Alive Day Memories". In the video Bryan speaks of his story, and his near death experience while he was serving our country. I've always honored and valued the meaning of an "Alive Day" for our military members severely wounded in combat. Though, I do not think my journey is nearly what an "Alive Day" is to them, I do feel like it's somewhat an "Alive Day" for me... for my story, and my fight in the breast cancer vs. life decision I had to make. Please don't get me wrong, or find it selfish of me to call my PBM anniversary an "alive day"... I believe our military wounded in combat deserve the title much more than I ever will...I just don't quite know what to call my day. It's like a "Gotcha Day" for someone that has been adopted, but not quite that either. All of these days are monumentous days, days of gigantic significance in ones life. 

  There is such a gray area for Previvors. We are left in this "unknown", "uncharted" territory. Not a "Survivor", often not even considered "fighters". Honestly, if someone were to label me a Survivor (as I have been before), I instantly correct them. I do not consider myself a survivor. I am Katie, I am just a young woman who was able to make a choice, I am a "Previvor". I didn't go through NEARLY as much as my Mom did. I just chose to have my breast tissue removed. I wasn't told by a doctor that I likely only have "x" amount of years to live. I was told that if I didn't have this surgery, that breast cancer would almost undoubtedly be my future...but it wasn't a death sentence, yet. I got to make a choice. A couple other previvors and I were once told by a Komen representative that they do consider us "Survivors", as we have had surgery, because of breast cancer. It just doesn't feel right to me, to be labeled as such. I have seen many survivors. I have seen a fight so strong, so unwavering, when I look into a survivors tired eyes. Yes, I have a fight in me, but, my journey, in comparison, seems so minuscule to what many survivors I know, have gone through.

  On the day of my prophylactic bilateral mastectomy, I wasn't sad. There wasn't an ounce of my being that wanted to walk out of the hospital. I was ready, I was happy, I was alive. For that reason, I feel like it is my "alive day". I knew what I was getting into that day. I knew I would feel physical pain, but I can honestly say, it was NOTHING compared to the amount of emotional pain that breast cancer had previously caused in my world. Nothing. I made a choice that day to change my future. I made a choice to save myself from the grasp of cancer. I made a choice to tell cancer to "F off" (Yes, I will swear right now, because my gosh...it is relevant). 

  In the past year, I have grown exponentially. I see the world in a new light. I feel the sun, wind, and rain with passion. I feel love, laughter, happiness, and sadness with so much more depth. I am a changed woman. I am a newer, better version of me, because of my "alive day". I look at my loved ones with a stronger sense of awareness and compassion, for I understand the gift of life...the gift I have been given. I was given a fighting chance. I was given life. All of the people that collectively worked to grant me such an incredible opportunity (one that I only wish my mother had been given), they saved me. They saved me from that visit to the doctor...the one where a doctor tries to hide the human emotion, and report the findings of a malignant breast tumor. They saved my children from having to watch their mom suffer. They saved my husband from having to bury his wife, because of a disease that he knew might eventually be my fate. Each and every person along my journey, each person that helped along this path...they were part of a life changing opportunity, a life saving opportunity, if you will. 

  I believe this year has been easier on me than it has for many of my loved ones, but thankfully, they all stuck around. I could thank so many people individually, but that blog post would be miles long. There are so many amazing people that have stuck by me, have cheered me on, have been proud to be my support throughout this first year...they are all equally a part of my "alive day". Without the love of family and friends, I don't know if I would have had the strength to make the decision to have my PBM...they are my reasons. This year, is completely dedicated to those people...the ones that I am honored to call "mine", be it my children, my husband, my parents, my siblings, my extended family, and my friends...if I call you "mine" in any term, you made this happen. You made this choice easy. You made my life worth living for, worth fighting for. From the day I chose to have a PBM, to today, and for the many days of my future, you too, have saved me. 

  I may only be one year out from this, but it is an anniversary that I will NEVER forget. I respect it, I honor it, and I am so damn proud of it. 

One Year Recap Video!

My Journey...

Tuesday, January 21, 2014

The Trouble In Letting Your Mind Wander...

 

   I like to think I'm usually very positive. I like to think that my good days outnumber the bad days. I believe I can turn lemons into lemonade most days....then it happens, a cloud in the sunny skies. No one can be strong all of the time, and even the most positive people have doubts and weakness once in a while. 

  Last night was one of those "weak" nights. I threw myself a pity party, and the more I thought about things, the more upset I felt myself getting. Usually, I block the sadness or negativity and turn it into all the positive reasons to be happy....but, last night, I felt so lost and angry. I suppose we all have those really bad days, where your mind just doesn't shut off...where the more you think about things, the more upset you become. 

 I keep thinking I want a third baby (yes, this is TMI...stop reading if you don't like it). I really thought I was done having kids after my pregnancy with our daughter. I remember how much the second (third, really) pregnancy wrecked havoc on my body. With each baby I had gestational diabetes, and it got considerably worse for me the second time around. I had to be put on insulin injections four times a day to control my GDM (gestational diabetes mellitus). No matter what I did with my diet, for both babies, I couldn't get a handle on it. I could eat egg whites one day and my blood sugar would still skyrocket...I could exercise all day if I wanted, and I still had issues. There was nothing I could do, I felt helpless and fearful that I was hurting my babies. Our son was totally fine when he came out, but our daughter definitely had low blood sugar. It's terrifying, as a mom, to worry that your body could hurt your own babies. A fear I have often, when I think about my maternal family history with breast cancer. 

  I can handle anything that happens to my body. I can persevere..unless it affects my children. As soon as my children's well being (physical and emotional) come into play, I turn into a fighter. I change into a different person when my kids are involved. 

 I let myself "go there" last night. I tried searching for information on third pregnancies with GDM, and I really couldn't even find much at all. I guess most people stop after round two with GDM....then I got to thinking...and this is where the mind can be dangerous and mean...

 I started the "why me"? The question I have always fought to ignore, because I find it to be so selfish and ridiculous. People have things way worse, yet here I am, pouting and struggling with this silly question. I let my mind slip into this dark cave...the "it's so unfair" cave. I began asking myself, "why does this have to happen to me?", "Why does my body do this?", "I don't trust my body", "I am scared for what will happen". I let my mind go to the place of not understanding why I am in my twenties and, yet, I fear cancer like I am in my seventies. I let my mind go there when I thought about how unfair it is that MY body seems so toxic...my body puts my children at danger. I started thinking "whats wrong with me?" and "Why am I so selfish?". Here I am wishing for another baby, and yet, I know that there is such a high chance of GDM again...they could have diabetes themselves, they could have severe health problems (under developed lungs, seizures, etc) and to top it off, one day, they could end up with the fate so prominent in my family...cancer. Not to mention, the likelihood of my own type 2 diabetes down the road. 

  That's where the "unfair" thoughts come into mind. I feel healthy. I have gained weight post PBM, but I am strong, eat healthy (for the most part), and I am very cautious with my body. Why does my body feel like it's always against me? It's hard to comprehend why, as a healthy individual, I feel like I have so many road blocks. Women my age rarely worry about these things. Most pregnancies (even if women are overweight) don't result in GDM (please understand that I know things could be MUCH WORSE..this isn't a "one up" on how bad it can be...I cannot stand that). Most women don't look at their toddlers and wonder if the fight against cancer will be revolutionized by the time their kids grow up (wishful thinking...praying on it everyday though). I'm wrapped up in the "unfair" world, and I know I need to kick that mindset to the curb, but it's a reality in my world. 

 Knowing that my geneticist advised me to remove my ovaries in just six years (likely, a vast number of my friends will just start having children by that age), I am stuck on this idea of wanting one more child. My kids enrich my life, and I'd like to believe that I do the same for them. I always wanted a big family...even more so after my Mom passed away. Being an only child was HARD during that time. I never want my kids to feel alone. God forbid anything happens to me (it will, one day, but hopefully when they're old and have their own grandchildren), I want my babies to have one another, to be united. I don't want my children to ever feel alone in the world. The more of them, the better off they'll be later in life. Family is incredibly important to me...big families make me happy. Selfish, maybe? Though, I think of my children in every decision I make, I feel like adding another child is so right. Then that cloud comes over my sunshiny sky and I feel awful for wanting another baby, knowing what my body can do...and I am stuck. A brick wall, a doom and gloom feeling that is so hard to escape. 

 In my very natural urge to fight, I know I cannot just sit around thinking this way. I have to let life happen...but, the medical side of this fight knows I should get an opinion from a specialist. I have to see if there is a healthy way to proceed. It's a yes or a no...there is no middle ground on this one. Yes, it can be safe...or, no, it would be detrimental to any child I would conceive. I just wish (isn't that loaded word?) that none of this was an issue. I wish I could have a normal, easy pregnancy. I wish that I didn't have to fear  the future for my children, in terms of the genetic predispositions. 

My mission for the day, week, month, year...I have to avoid these "I wish" thoughts. I have to take each day as it comes, and know that there is no mountain I cannot climb. I cannot change my genetics and I cannot change the way my insulin receptors work while pregnant. I can only work with what is given to me at the moment. At this moment, I am blessed, no matter what tricks my mind can play, I am blessed. 

Thursday, January 16, 2014

Emma's 2nd Birthday Video Montage



It's so very fitting for me to share this here. Emma was absolutely a gift from above! It was this time last year that I was faced with my choice to have my prophylactic bilateral mastectomy. Her 1st birthday was the day I was supposed to quit nursing, to allow for my body to get back to "normal" for surgery. In just her short time here, so far, we have gone through so much together (as mother and daughter). Follow up post to come! I'd prefer not to get too sappy on this one, as this video is all about my special girl and the love she brings to our lives!

Friday, December 6, 2013

The Milestones...

  First, let me just say...slacker much?! I get so into updating my facebook page and talking amongst many Previvor friends that I often forget to really share my feelings on my blog.

  So, tomorrow is December 7th. One year ago, I took the leap of faith to see my geneticist. It's funny, how events like that stay so fresh in your mind, even a year later. We brought our daughter with us that day (because I am a super anal retentive mother and hadn't really left her with anyone for more than a few hours). I remember, so vividly, looking at her while the geneticist and I were talking. Wondering if she would have to be in that same seat one day. Wondering if there was something I could do to change her future as well. Sometimes I feel like maybe I let her down, because I had this surgery. Maybe I should have waited for it to happen to me...you know what I mean when I say "it". Now that I have substantially lowered my risk, I have also basically taken away that chance to figure out what the mutation is, that has taken away so much from me. Had I waited, then, maybe I could have saved her. I think there will always be that one part of me that wonders if I should have done different, for my own children.

  Thats when the fighter side of me starts kicking. The positive side of me refuses to believe that the answer only lies within that breast tissue. My gosh, I read articles about genetics almost weekly, and see the advancements that are being made...and I think to myself, I did the right thing. I'll be alive to (one day) know the answer to this. I'll be alive to see geneticists do big things. I have to be. I have to be alive to make sure my children aren't ever at a disadvantage. I have to be alive to help them, in whatever decision they have to make, if we figure out what this mutation could be. I walked this journey without my Mom. I think that is really one of the hardest, saddest, most vulnerable feelings I have in regards to my journey. Admittedly, when I am alone, driving the four hours each way to see my surgeon, there hasn't been a single ride that I was able to keep a dry cheek. I miss her. I want so much to have her with me. I want her here to hold my hand and tell me that this WILL work. I want her to twirl my hair when I feel down, or angry (Yes, as much as you may not believe, I do get angry, and jealous, envious, and upset that THIS is what I have had to go through...all of it, and all in my 20's, when I am supposed to be carefree and naive to this kind of stuff). I want her to tell me that certain feelings are okay, or that the scars will heal, or that she is proud of me. I still need my Mom. Every damn day. I still talk to her, every day. She is still very much a huge part of me, and she always will be...but, damn it, do I miss her.

  This year has been amazing. Even though it's been the year of my blossoming as a Previvor, filled with surgeries and doctors...I am so blessed to have had this year. I feel like this year has all been about saving my life. But, what about her life? What if I could have saved her? What if I knew then, what I know now? Before she was ever diagnosed. I keep going through the "what ifs" and I know that it's only that...just "what if". Because, there is nothing I can do now, the "what ifs" are pointless. Most of the time they only lead to "what if she was still here?"...and I try to imagine how happy she would be, and how happy I would be...and how happy my kids would be. They deserve to have known her, and cancer took that away, from all of us. What if she was here this year? All I have is what I make up in my mind...how I think she would have been with me through all of this. How I think she would have held me and cuddled me when I was scared. How I think she would have taken care of my kids for me, how she would have been the person I could call and feel comfortable leaving my babies with, because I would know that there was nowhere else more safe than in her care...in her arms. She would have been the stars and the moon to my kids, like she was to me. Now, she is the stars and the moon. At a distance, unreachable. Intangible.

 I just have to know that what I did, for my kids, was the right choice. I always say I believe my Mom saved me. I wonder, am I saving my kids? I am not sure, on what aspect to see it from, but, I do know that I am saving them from the heartache of losing the one person in the world that will always have their back (I am biased, and I say that, because I know I WILL always have their back. I will be the mother to them, like the mother she was to me). I am, hopefully, saving them from watching their young mother lose a battle that she cannot control.

 Tomorrow also marks the seventh month from my prophylactic mastectomy. Seven months of aches, pains, and discomfort...and I wouldn't change any of it. If given the option to do it again, I would make this same choice, over and over. I saved me. No matter what the outcome would have been if I didn't do this, I still know that I saved me. I made this choice. Within this year, I have learned so much about myself and my own inner strength. I have become someone that I am proud to be. I have become someone that I hope my children will be proud to have, just as I am so proud to have had my own mother. I hope, that after all that time spent glancing at my own daughter in that geneticist's office, one year ago...that maybe next year will be different. Maybe next year, maybe...there will be more answers.  Maybe, in the years to come, there will be a cure. Maybe I'll never have to look at my children again, and fear that this very thing can happen to them. As a parent, I can only hope and pray to God that they can be spared from the devastation that I have seen and felt, all caused by breast cancer.


Sunday, September 29, 2013

National Hereditary Breast and Ovarian Cancer Week (September 29 - October 5th)

  Up until this year, I had no idea that HBOC week was even a "thing". I had no clue there was something as "Previvor Day". Honestly, I hadn't even heard of the term "Previvor". It's amazing what can happen within a matter of a year. It's amazing that ones life can change so much. Its amazing that one word can go from being nonexistent in your vocabulary to something that you now use as one of the top five words to describe yourself. This year, everything seems so much more meaningful. The mornings I wake up, the hugs I give and receive, the days and nights I spend holding my children...I could go on forever. But, even more so, my Mother has become more meaningful...as if that was possible, right? This year, I really got to see just how strong and amazing my Mom was. I am going through 1/4 of what she did. I only had a mastectomy and reconstruction...she had cancer. My mother had surgery after surgery, chemo, radiation, years of medicine, and the knowledge that there was something in her body that would eventually kill her. I got the chance to take preventative measures. I got the chance to have the surgery and skip the really, really hard part. I don't care what anyone else says, as I can only talk for myself on this...but, being a previvor isn't nearly as difficult as being a survivor. I may take heat for it, but, it's my view. I cannot say Previvors have it easy, at all. Most of us know death all too well, most of us don't enjoy the panic when we feel a lump, most of us didn't feel excited that having surgery or taking medicine was our best chance to avoid cancer. It's unfortunate, choosing to have the surgery...because, well, the other choice really wasn't a better alternative. I don't want people to think this is an easy choice, having a prophylactic bilateral mastectomy. I made a choice to have surgery because, if I didn't, I could have been in my Moms shoes.

  The thing is, if we don't talk about this, if we don't shout it from the roof tops, then where will our family members be? If the term "Previvor" was more known, maybe my Mom could have been one. Maybe, if National HBOC Week was bigger, more well known, then my own Mother would be alive today. I can't always hang on this thought though, because I cannot fix the past. What I can do is make a difference now. You can make a difference. Make this week known, make HBOC known, make the word "Previvor" as common as the word survivor. I can only wish that more people could become Previvors as opposed to survivors. I want more people to be able to have the surgery and skip that really bad stuff that comes with having cancer. Of course, having breast cancer doesn't mean death...but, if we could spare more people from having to go through the chemo, radiation, years of drugs...then why don't we? Why can't we get the word out more? What are we doing? We may not be able to cure cancer, and HBOC may only be a "small" percentage of people that get breast/ovarian cancer, but surely we can make a huge change in our cancer community. Thankfully, I believe we are on our way. The women I have met along my own journey have great big voices, and I think we're getting somewhere. So, this week, and every week, I'll keep shouting from my rooftop. I finally realize this is what I was meant to do (beyond being a mother...I always knew I was meant to be a mommy). I hate that the events in my life have brought me here, but, I was meant to be right where I am. I thank God for it. I know it sounds twisted, to thank God for this, but I do...because, I would have never learned the term "previvor". In the bigger picture, maybe I am supposed to be here, to help others, to protect them from what I watched my own mother endure. Maybe this was all in the plan. I won't lie when I say it seems "unfair" that this is how things happened, but, as unfair as it is, maybe I can make a difference, so someone else doesn't have to feel that very "unfair" feeling when their loved one is diagnosed with cancer. If you know someone that was diagnosed at a young age, that has multiple family members with cancer, has men in their family with breast cancer or even prostate cancer, or any other warning signs that come with HBOC, please ask them to do some research or have genetic testing. It's scary...for sure, but even more scary than taking the first steps is when it's too late to change it, when it's too late to be proactive. So, if you can, help me and others make this week well known...it could absolutely save lives.