National Hereditary Breast & Ovarian Cancer Week

  It's that time of year again...we're about to land on "Pinktober", but before that, we celebrate HBOC week and Previvor Day. There are always so many mixed emotions that I feel around this time. Part of me is proud to be amongst some of the strongest women I have EVER met...while the other part of me feels so gloomy. If you know me, you know I like to try and look at the positives in life. There are so many things to be positive and happy about.

  However, this year just feels so different. This year, some of my closest Previvor friends have since become survivors. I know I can't speak for every Previvor, but deep down...we ALL fear cancer. We all go through hoops to avoid cancer. We meet geneticists, have MRIs, mammograms, ultrasounds, blood work, surgeries...all in hopes to avoid cancer. And, guess what....cancer doesn't give a shit. Yup...I said it. Cancer doesn't care. Cancer doesn't take pity. We live this life, as Previvors, we go through so much just to avoid something that, for a lot of us, is inevitable. Many of my friends will likely still have scares...some will be diagnosed...and unfortunately, we will lose friends/loved ones.

  There is a fine line between being a hypochondriac and being a realist. Some of us will panic at the minimal bump (scar tissue...been there, freaked out) while others may push it off and pretend that after the surgeries and precautions, they are invincible. We are stuck. We are stuck in this spot....between feeling like we are free of getting cancer or wondering when it will strike (no matter what efforts we take to prevent it). We are in this gray area. And, the only time we are truly free of the unknown, is when that really bad, scary moment happens...that moment that cancer actually happens. I know, I know...you're probably thinking "good grief, Debbie Downer". However, this is MY life. This is a very real fear. I may not get breast cancer since I have no more breast tissue. I may not get ovarian cancer, since thats next on the surgery list as a Previvor....but, I can't remove my skin, or my lungs, kidneys, brain, etc.

  I have an amazing friend....she went through every preventative measure...and STILL ended up with lung cancer. Cancer does not give a shit...and it especially doesn't care when you are genetically predisposed. So, what am I supposed to think during this week? It's that struggle to be happy and the realization that maybe I should be sad...I've lost people I care about...because cancer doesn't care. So, I live...and I respect the time and relationships that I have. As cliché as it sounds I thank God for another day. There are women before me that would've given anything for just one more day. So, I celebrate what I have. I celebrate these amazing women, who put on a brave face. I celebrate being a Previvor because of so many of the strong, dedicated women that I find myself amongst. If I can say anything, in this life, I have met some of the most incredible women. My heart has been touched by the grace, strength, love, and empowerment that I see in each and every Previvor/Survivor I speak to.

  This week is about my friends. This week is about women in my world that are making a difference. I can celebrate that. I refuse to celebrate being "cancer free", because...cancer does not give a shit. I may be cancer free today, but tomorrow is always a mystery. So, I refuse to worry about staying ahead of cancer this week...because that just sounds dumb, in my opinion. "yay, look, I don't have cancer...yet" just doesn't even sound right, it kind of sounds braggy. HBOC week and Previvor day is all about acknowledging the struggles we all face...and taking a moment out to thank those women around me fighting like hell to make a difference.

  To my closest friends (Survivors and Previvors)...my "tribe", you know I keep you in my heart every day. This year has been awful. You guys inspire me. You make me laugh. In the worst moments, you all still smile...and even though we are all hurting and we all know it sucks, we still stick together. I am a better woman because I have you guys. You're brilliant, beautiful, and a huge blessing in my life. I am so proud to call you my friends. Leanna, Laura, Shannon, Emily M, & Emily K....you girls are angels on earth.

  I also feel the need to mention some other names...because you women have made such a huge difference in my life as well. Lisa...I am honored to know you. What you do for other women is so inspiring. Your vision for My Destiny is incredible. Please know that you and Kim make a difference, EVERY MINUTE of every day. My YP gals that care more about others than themselves, Stacy, Gosia, Lisa G, Andrea D, Emily C, Colleen, Shari, Melissa V, Cortney S, Lacey, Casey, Megan L, Jessie, Stephanie C, Kate W, Carly S, Trisha F, Angela A, Carmelita, Rachel S, Kimberly A, Jesslyn, Heni, Andrea H, Lisa C, Vikkie, Tathra, Shawntel, Nastassia, Tanya W, Gigi, Heidi, Jessica D, Sandy M, Heather E, Allison G, Holly M, Galia, Michelle L, Michelle B, Sandra P, Kionte, Klara, Michelle S, Deidre, Terri, and so many other friends that I have met along the way...this week is for you. Not for the cards we have been dealt, but for the way you have all touched my heart. You all have made a difference in my life, and undoubtedly in many other lives as well.




 

"Singlevivor"

   So, here's the deal...sometimes when things actually get really bad, and blogging would be an ideal outlet for stress relief, I tend to shy away from posting. I've really been trying hard to do the whole "suck it up" thing. You know, the "no one actually really cares about your life" thought process? Many people often use this tactic to gloss over their pain. I constantly tell myself that boo-hooing is only a sign of weakness, and to share my boo hoo's would actually probably bore people. However, there is always that one part of me that knows other women can relate to me. I'm not quite sure how I should even go about this without posting too much personal information about others...so, I am going to try to keep it as focused on myself, as possible. You'll likely be able to fill in the gaps that I will be leaving, but I ask that you not place judgement or make any crazy assumptions.

   My marriage is...over, I guess. Saying it and typing it is always so hard. I used to think my marriage was invincible. Yes, we argued (who doesn't?) and had minor issues..but, I never saw this coming. I met him when I was 14 and had looked up to him, possibly even idolized him, for years and years. I was so in love...even during fights, I couldn't imagine my world without him. There are still days where I wonder how I will be, without him. He was my best friend. Beyond my Mom, he was the closest person to me...no matter what happened in my world, he was the first person I went to. I trusted him with my soul. It was more than just a simple love. Our love was everything to me. My marriage was my priority. I birthed three beautiful children all because of the love we shared. Everything I did, I did with my husband in mind. I can honestly say, I put him and the kids way before everything else. If he would have asked me to move a mountain, I would have found a way to do it, or at least have built a tunnel...

   Making him happy made me happy...it's simple. I can't blame him for myself not making myself a priority. Maybe I'm "basic", but putting others before me has always been important to me. Making the world happy for others was always more important than making the world happy for me. It's a new concept that I am struggling with. I'm learning how to make choices for ME now, and quite honestly, I am not even sure what makes me happy, other than seeing others happy. I don't even know if I can be happy right now. To be honest, I am scared. Terrified. I am a woman who just turned 30, has three children under the age of 6, no college degree, no career...and ultimately NO insurance after the year is up. Do you know how absolutely terrifying that is, as a Previvor? Everything I did, everything I have done to be proactive...and I will end up without insurance. Knowing that I could still end up with cancer at any moment chills me to the bone...but thinking about going through it without insurance is literally one of the most intense fears I have ever had. But, I either stay in a very unhappy marriage, or I walk away and pray that I can make a better future for myself. Either way, the fear of making a wrong choice plagues me.

  Speaking of fear, I probably should have titled this blog post "I am scared, and I'll say it about twenty times in this post". Not only is it the huge things that I am afraid of, but it's all the smaller things too. How do I even begin to explain my defeated body imagine?! Oh my gosh. Where do I even start? I sometimes let my mind wander to those awful, insecure thoughts. Maybe it was because of my body? Maybe after having so many kids, my stomach disgusted him? Maybe it was the surgeries? Maybe he could never find me sexually attractive again? Maybe I was "washed up"? Honestly, at 30 years old...my body has been through A LOT. I always wonder, if I hadn't had my PBM, maybe my marriage would have survived. I'm not saying that was the downfall of my marriage. You can ask him, and he'd tell anyone, he still finds me sexually attractive. He still says he loves me. He swears that what happened in our marriage was not because of my PBM. However, if you ask just about any Previvor that was married and ended up divorced (by the way, there are a lot of us out there), she'll likely have similar thoughts as I do. What if my body had been better? What if I never gained a ton of weight while pregnant, what if I still had nipples (yes, it was a legitimate concern...and by the way, since we're on this...as of a week ago, I now have nipples!!), what if I didn't have these scars?  Why wasn't I good enough?

  And then, that fear comes again. Fear often rushes over me like waves. If my body may have turned off someone that loved me, how will another man ever look at me and see beauty? Will I ever feel comfortable being completely naked in front of another man? Truthfully, there are days where I don't even like seeing myself naked in the mirror...so why would anyone else like it? Obviously, I'm battling some insecurities. I just really never thought I'd be in this position. I genuinely never thought I'd ever be naked in front of any other man...except the man I married. I never imagined I would be in this situation. I thought he would have loved me more. I thought that the person I was on the inside made any external flaw of mine completely unnoticeable to him. I believed in fairy tales.

  So, I am taking it all one day at a time. I'm starting to see things from a different perspective. Some days I feel strong and other days I catch myself trying to come up for air, in between my sobs. Beyond losing my Mom, this is the absolute worst thing I have ever gone though. I have never been more hurt in my entire life. The one person that I thought had a safeguard on my soul, was the one person that was also able to break it. Don't get me wrong, I still love him. He is still a gigantic part of who I am...but, I know *I* need to be a bigger part of who I am. I need to love myself more than I loved him....because, I truly never did. I imagine this is how the whole separation and divorce emotions feel for everyone..and it's in that thought, that I find courage. If others can do it, so can I. I can get through this and come out a happier person in the end. I don't have to lose hope of that fairy tale love, because maybe it is out there...but staying in a broken marriage is not where I am going to find it. Maybe I need to stick with the cheesy "falling in love with yourself" concept. Maybe my fairy tale will come true, within myself. Maybe I am supposed to be the one to save myself, and learn to be who I want to be.

Here is to my journey as a "Singlevivor"...I am sure there are many more tears, glasses of wine, lonely nights...and even nights of happiness, to come. Cheers, to falling in love with who I am now and becoming who I need to be, for myself.



(Speaking of Singlevivors...you can find a sister group for "Singlevivors" though the Young Previvors support page on Facebook, which is one of my favorite links on this blog..if you find yourself in a similar boat, you're always welcome to join us!)

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)

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...

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. 

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!