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.

Thursday, September 12, 2013

My First Susan G. Komen Race For The Cure

    I was asked by another Previvor to join the FORCE team in this years Susan G Komen Race For The Cure. This is the first time that I am doing any sort of walk for Breast Cancer. See, the thing is, I never wanted to do it before. I didn't mind donating, but, most of the time, in a situation like that, the sadness seems to overpower the happiness. This year, I am stronger and have a much different state of mind. I can't always be mad at breast cancer...I mean, I can, I hate it...but, it gets me nowhere. By joining the FORCE team, I feel like we can get the word out even more so, about the genetic aspect of breast cancer. Maybe the right people will see our team....maybe just one person will consider genetic testing due to a strong family history. Maybe we can help save someone else.

  I have to learn to get over my sadness, hatred, and bitterness toward breast cancer. These people...they AREN'T breast cancer. They may have it, they may know it, but they aren't breast cancer. They are bigger than breast cancer...their fight is bigger than breast cancer. Though I may have that silly lump in my throat most of the time, or even break down and cry like a baby, I am finally giving in. I want to do everything I can to support the people affected by breast cancer. It's high time I get over myself and my fears or sadness around anything breast cancer related. What message does that send if I can't even be around people with breast cancer, all because I get angry that it took my Mom and my Grandma, right from my very own eyes? I'm putting my big girl pants on and supporting those, just like my family...no more bitterness. It's about standing up to breast cancer. I can do this. I can continue my journey in making breast cancer smaller than me. I am walking because I want to show breast cancer that it can't take everything away from me.

  I am linking my page/the teams page. By no means do I want anyone to feel obligated to contribute monetarily, but, I do ask for strength that day. Lord knows, I might need it.

I am also linking you to the FORCE website. This was the first "home" I had when I decided to stand up to breast cancer, and go for my prophylactic mastectomy. 


Monday, September 9, 2013

Prophylactic Bilateral Mastectomy (Part 1)

  It's been very much debated whether or not I should post these photos. The early weeks of my PBM, photos weren't really controversial as I didn't have anything there to actually show but scars. I was concave, at best. Truly, even then, I felt my body was beautiful, and my flatness was empowering because I took a stand to something much larger than myself. 

  Today, I am posting what will be my final "share". Afterwards, I'll likely only be showing them to women who might need them as a guideline of what is to be expected. Before my surgery, I googled "prophylactic mastectomy" on multiple occasions. Usually, after my search, I ended up highly discouraged seeing photos of what seemed to be so much disfigurement and mutilation. It seemed that my choice was going to end up making my body look much different, in a bad way. Really though, I didn't care much if my outcome was perfect...I didn't have this surgery as just a "boob job". It was never about that, and hopefully others in the same situation don't do it for the looks alone, because you'll be let down. The pain and detail that goes into breast reconstruction post mastectomy is extensive. It's a long process. This is not a "boob job". 

 I decided to share these photos for one reason. I do want people to know, all those scary images on google...they aren't the only possibilities. Myself, and many other women that have mastectomies have great outcomes. I'm only partially through with my surgeries, but, even in phase one, my breasts look good. I may be biased, but from my initial views of reconstructed breasts post mastectomy, I didn't have much hope. 

 My mom's reconstruction post mastectomy is what was in the back of my head, granted, she went through chemo and radiation before she did any reconstruction post mastectomy. The thing about my mom's reconstruction though, I believe she went with the doctor that she was referred to, not the doctor she picked. I'm not entirely sure this guy was the best pick for her. She had many complications, but, I mostly remember her being upset with the results, and I remember feeling like the doctor treated her body like a rag doll. The scars, the gaping wounds, the care...it was a nightmare. That's all I could recall from her reconstruction. Though, even with her mastectomy and reconstruction still in my mind, I chose to go through with this surgery...because no scar would be worse than the the emotional scars that breast cancer inevitably forms. 

  My main point of this post is that, it's not always bad. It's not always a nightmare. You don't have to go in thinking you'll come out looking disfigured. Plastic surgeons are better now than ever, and they just keep improving their techniques. I don't want someone to chose not to have a preventative mastectomy because they are afraid of the results. One of the nurses I had said something that was so right...you don't have this surgery for the cosmetic outcome, but it's okay to want everything to look good in the end. Plastic surgeons don't want you to leave their office unhappy. They want to make you look as perfect as possible. The images on google aren't always realistic. If I can offer that advice alone, don't take those images to heart. Go see your surgeon and request to see their photos, they'll be happy to share. Find a surgeon you're comfortable with. Find someone that you know is a perfectionist, someone that you click with. My PS was a breath of fresh air. I knew, at our first meeting, that I felt safe in her hands. 

  At the end of my expander journey, I know she was a great choice. Expanders don't have to look great, as they are only stretching the muscle to allow for the implant. The crazy thing is, even my expanders look good, in my opinion. I look at my results thus far, and I compare them to those photos I am so quick to recall and I know that not all outcomes are as scary as those photos, or my moms reconstruction. Don't let those photos scare you away. No matter what, if you're lucky enough to do this before you get told "you have breast cancer", the results should still make you happy. But, I do need you to know, there ARE good results. It's not always bad. Even more so, no matter what, you did/will do this for a reason. This is about saving your life, and no scar can make it ugly...it's a beautiful, empowering journey. Do not be afraid. 

  The top photo was taken not even 24 hours after my mastectomy, the bottom photo was taken a couple days after my final fill. 

 Side photo from final fill. Implants will be put in at exchange, evened out, and the "dog ears" will be removed. All in all, I couldn't ask for a better outcome in this first step.