PREVIVOR: A person who is not diagnosed with cancer, but has survived the predisposition, or higher risk, of cancer due to a genetic mutation and/or strong family history. After being armed with this information, a previvor can make informed choices prior to a cancer diagnosis.

Saturday, September 24, 2016

HBOC Week 2016

Wow.....been almost a year since I've last posted. Oops. But if you think about it, isn't that almost a good thing? That means that I've moved on....most days I don't even think about what I went through in 2011. (Wow....5 years ago??) I think about how scared I was, how I wanted to change my mind in the eleventh hour. After I started having complications I was convinced that I'd have to live completely breastless (foobieless?) my entire life. I knew in my head I'd made the right decision, but I still remember sleeping in the recliner the first couple of weeks and not being able to get comfortable. I remember breaking down into tears for no apparent reason. I remember calling Mike in a panic when I realized I was draining profusely from my expander were my surgical scar had busted open.

Morning after my mastectomy. Trying to get warmth
to my necrotic areas to get blood flowing

All of that eventually ended. I got my foobs, got my implants, got one replaced because in a simple in-office local anesthetic procedure a hook from the stitch got dislodged in it. No lie. My PS's office is across the hall from an outpatient surgery center. I waddled over, with my hand and some tape and an ABD pad holding my implant in. I remember the entire staff doubled over in laughter about it. How I got dropped off at my PS's office and then had to hurriedly call around and get a ride back home after my surgery. I remember having to still be awake (since I hadn't fasted before) and my PS telling me the implant needed to be replaced. I just laughed uncontrollably and said "Merry Christmas to me" I mean seriously what is my life? Who does that happen to?

Despite ALL of this, I finally got through it and here I am several years removed from all the craziness.  You know what? I look at the girl in the photo. The one who's tired from surgery, worried about her necrosis, and unsure of the future. I also see quiet strength in her. It's a whisper but it's there. She won't let this defeat her.

So my nugget of wisdom for this HBOC week? If you're in this position I'm truly sorry. It sucks. Like, for real. Most women struggle with where to eat, what to wear, etc. And you're having to make real decisions. Decisions that will impact the rest of your life. But I can promise you that every single one of you has the power to get through this. No matter how you decide to do, surveillance, etc. You've taken the first step. You have all the power. You just have to decide how to use it.

Friday, October 9, 2015


Well it's that time of year again. My Facebook timeline is flooded with either pink ribbons and sparkly pink memes touting breast cancer awareness and "Save second base!" or articles and memes that almost border on angry that people are making light of a horrible disease and how we should fund research not awareness. I would say I fall somewhere in the middle of these two categories.

I would say that I am keenly aware of breast cancer. I don't need more awareness in my life. I watched my grandmother fight a long hard battle with it that she eventually lost. I met my biological mother for the first time who later passed away after battling the disease. She died the day before my grandmother died..which if that's not irony I really don't know what is. I had my struggles too, with the testing and the waiting and the wondering. Then, if you read previous entries you'll know, my mastectomy was hardly a walk in the park. To this day I still get sharp pains or dull sensations in what now serve as my breasts. I'm not entirely happy with them but what woman is ever entirely happy with her body? But I'll take that over a cancer diagnosis any day.

But I digress.

The point is, WE GET IT. We all know breast cancer exists. Calling this "breast cancer awareness month" is almost pointless at times.

And the pink....lord jesus the pink. And don't get me wrong, I love pink. "Pink is my signature color" (If you don't know what that's from then you don't know me at all). It just is so disgusting that companies will throw a pink ribbon on their product, make some vague promise that you're helping breast cancer research and it FLIES off the shelf. The people buying it have the best intentions but the company gives little, if any, proceeds to actual breast cancer research. Do your homework! If you want to contribute, great! But make sure you know where your money goes. I only buy products that name a very specific reputable charity. Then you'll be really making a difference.

On the flipside, I celebrate October because of the people who've fought, and those who are no longer with us. THEY'RE the real heroes and they deserve to be celebrated. And we deserve a cure, so no one else has to earn the term "survivor" or "previvor" If I think I had it rough? I can't even imagine what these women go through.

Every October I remember how pleased Granny was with the month. She loved the pink ribbon and all of the awareness and celebration. She was so pleased the year that most of her grandchildren did Race for the Cure in her honor.

So wear your pink. Buy your pink products. Hug a survivor or someone who lost a loved one to breast cancer. Just remember to donate your money to actually finding a cure so that one day October won't be breast cancer anything any longer. And remember early detection is feel up those girls and go get them smushed in a mammogram machine if it's time.

And amidst all of the pink and the pretty, just remember that breast cancer is not a pretty disease by any stretch of the imagination. And for the love of all things holy...don't start with those stupid Facebook games. Because I will find you. And I will kill you. (Again, if you don't know what it's from...)

Tuesday, June 30, 2015

Time flies

Wow. Its been awhile since I've posted anything to this blog. Most days, I don't even think about the fact that I had a mastectomy 4 years ago. When I look in the mirror I just see myself...not two foreign objects siting on my chest that pass for breasts. Which is cool. I'm finally accepting myself. Which has honestly been the hardest part of this journey.

Right before my surgery 4 years ago I was in the best shape of my life. I pretty much lived at the gym, was at the lowest weight I've ever been and was really happy. I knew my surgery was coming up and I just figured it'd set me back a few weeks. Well......if you know me or have read other posts on this blog you know that I was sadly mistaken. I had complication after complication and I became really depressed. And being that I'm an emotional eater, I ate. A LOT. I remember Mike looking at me and saying "You're going to hate yourself when you realize you gained weight," And of course,,,he was right (I'm not telling him that though because he'll get a big head). After a few months I finally drug myself back to the gym just to have it close a month or so later. I made a couple of failed attempts to get back in shape but nothing really took.

I ended up back at my starting weight. Great. There goes all my hard work I put in. And my chest was considerably smaller now so it was really noticeable. I felt gross. I also felt like I couldn't do anything with my upper body since my surgery.

After a few years (yes years) I started going to a gym a lot of my old gym friends went to. And I loved it! I even worked out with a trainer some. I kept insisting I couldn't do anything that required chest muscles. Then it hit me...I had become one of those people who uses their health problems as a crutch. So I ignored that voice in the back of my head and I tried. I did it! I still suck at pushups but hey I did a whole 25 the other day (stop laughing). And I really like being strong.

Right after my last brain surgery I got a tattoo on my foot. The Chinese symbol for "strength" I felt really strong for going through 4 brain surgeries, But yet, after my mastectomy and all the 84,000 things that happened after (ok that number is a slight exaggeration). I felt defeated. Like I had nothing left. But I realized today that while I may not have my real breasts or be able to breast feed, I do have breasts that'll stay perky and breast feeding isn't that important to me anyway. And I don't have to wear a bra which is a MAJOR plus.

My advice to anyone who is just starting this crazy, nutty patient with yourself. Its taken me 4 years and I'm still feeling some crazy emotions sometimes. You may be giving up some things, if you choose the surgical route. I know I did..  But I gained so much more Power over my health. And strength,,,it's still there.

On a more personal note, I've been so busy lately. I may not be updating on this blog again. I won't say never, because I may chime in from time to time. But I think I've reached the point where this is no longer the biggest thing in my life. Or any of my health problems. I refuse to let my Cowden's or anything it's caused control me. And I go back to nursing school in August so I really won't have time to. Feel free to check my other blog if you're just overly interested in the other parts of my life.

Life Goes On