These things won't break me

Many have asked me how I'm doing lately, and why I haven't blogged in months. Honestly I've written and re-written this post multiple times over the past few months and couldn't bring myself to hit publish. I've even contimplated giving up this blog all together. I promise I haven't forgotten about you all. I think you've inspired me more than I've inspired you. You keep me writting, even when I want to give up. A few weeks back a girl whom I've never met recognised me at a local bar and hugged me while thanking me for sharing my journey and being a voice of encouragement in her journey. Somehow the universe continues to send me signs reminding me of why I started this blog and why I must continue it. So here goes..

I first began this blog over two years ago with the intention of being a positive light for those embarked on a simular journey in life. To be completely open with you, I've just been trying to live and let go of that part of my life. Mentally I've tried my hardest to turn that page and forget it all. I'm slowly learning that some journeys never come to an end, but go with you and become a part of who you are. I dont want to be that girl any more. Yet I am. This is who I am. I am a mosiac, a beautifully broken work of art. I'm the loud, dance obsessed crazy almost 30 year old that had a double mastectomy at the age of 27 at the hands of a disease that no one knows anything about. Nothing will change that. So I've been trying to live, and enjoy life to it's fullest because I'm here and I'm alive. And I'm still trying to figure out how to identify with myself and who I am as a person.

A few months ago one of my best friends and I made the trip to mayo to meet with their gentics team. Having her by my side helped make it seem like more of a tiny vacation (aside from traveling 6 hours home in a terrible snow storm).

Mayo itself was incredible. Everyone was so kind, and accommodating. Sadly their team was just as speechless about my case as every other Dr I've seen. Genetic mapping, and chromosomal testing revealed nothing other than the fact that I'm a mosaic. This means I didnt enherit my condition from anyone. Whatever chromosomal abnormality I posses is uniquely mine. There was a flaw within the cells of my genetic makeup creating a mutation that lead to this beautifully broken soul. They have no idea what caused my hamartosis and told me I'm unlike any case they've ever seen. They suspect Cowdens syndrome, however the genetic testing for this disease isnt 100% accurate and many test negative even if they posses the disease. I tested negative, and while I do have some sympoms, I dont have enough to be clinically diagnosed. I am to touch base once a year with anything that may have changed with either my symptoms, or the genetics research field as its ever evovling. I was reassured that maybe one day they will have heard of another like me. I really didn't expect answers, it seems to be my luck, but I had every hope they would have an idea. All we really know is that whatever chromosomal abnormality it is, my daughter will have a 50% risk of being just like me. So I pray for answers at some point in my lifetime for her sake, and the sake of others. No one is ever truly alone in this world. I believe that with every part of my being. I laughed and told my husband that one day his family name will be made famous because of me.

I just reached the 2 year anniversary of my mastectomy. On one hand I can't believe it's been so long, yet on the other it feels like it was just yesterday. I wonder if it will ever truly feel real to me?? The Saturday before my surgery My family and I celebrated life on the beach in my swim suit, for one last time. It was the last time I actually felt the sun warm my chest. Every year on my anniversary we make the trip to Lake Gavena and celebrate life and love, and having made it. It has turned into one of my favorite trips of the summer.

I am at that point in the game where the hardest parts are behind me and the side effects of all the surgeries have become my new normal. I've tried to be very transparent and honest with the world while being a positive light for women everywhere. When I'm having a bad day (because I'm human and do) I try to keep it to myself because the world is full of enough negativity. There is always a silver lining. For me that is the rest of my forever with my family. I haven't blogged because I fear sharing my truth will bring you down. I am struggling and I've kept it to myself. Often times I forget that maybe you're struggling too, and maybe my honesty will help you feel less alone. Afterall, that has been my mission from the very beginning. I have no real reason to complain. So many others have it far worse than me. I think that's the part of this entire process that has been the hardest for me. How can I hurt, and feel emotions when I survived, while others didn't?. How can I stare in the mirror and cry two years later? Your mind can provide an annoying dialogue and sometimes our emotions demand to be felt. I think we often beat ourselves up and compare ourselves to others. Yes someone may have it worse, but does that mean we aren't allowed to hurt?? I'm still trying to find the answer to that question. I have many good days, an innumerable amount actually. Im am so greatful and incredibly happy. But as human as I am, I also have bad days, and sometimes they are very bad. I'm learning to cope. Truthfully speaking, I hate my implants. And I'm angry that I hate my implants. I'm angry that I have negative emotions about them, or that I cry when I can't do something as simple as open a bottle or do a single push up. I don't deserve to cry when others have it worse. So I fight with my mind and remind myself of every silver lining. I dream of a day I wont feel pain like this anymore. I didn't expect this. I was supposed to wake up from my implant placement and have this all behind me. So I try with all my might to pretend that it is. I smile, and live, and dance and love this beautiful life I've been given. For whatever reason, I was chose for this life, and I'm trying my best to embrace it. I just can't help my wondering shower thoughts. I see myself topless and smile because I'm proud, and because of how beautiful they are. They really are perfect. I cry because I wish I didn't hate them so much. I wish I had MY breasts back. I wish I had appreciated them more. I force myself to love my implants, but they hurt terribly every day making me wish they were gone. I am said to have post mastectomy pain syndrome. It's caused by severe nerve damage during the mastectomy. My Dr placed me on gabapentin, and it takes the edge off enough that I can sleep at night without the pain keeping me awake. I will have it forever, but I cant help but wonder if the pain would be less if I wasnt toting around these giant implants. They are too much for me. If it wasn't for it meaning another surgery, being out of work, another Dr bill, causing my family more worry, not to mention having to fight with my Dr to even think about it, I would highly consider having these implants removed. My chest walls werent left strong enough for these massive things. I wish I could have picked their size, I didnt ask for 32ddd's. I'm over the daily pain and pull, the deep ache and stretch when reaching my arms out, having to massage them daily while constantly fighting capsular contractor. I miss the freedom of being topless or sleeping without a bra. These are but some of the possible complications you aren't told of before hand. You think there is a clear end to that chapter of your life when you wake up from your implant placement. You even celebrate your finish line..convincing yourself its all over with. But they will always be there, and you learn to deal with your new forever because you're thankful the bad stuff is over and you survived. And because the world reminds those that are still early in life that "you are so young, you need them", and because your Dr told you " you wouldn't identify as a women without them", you continue to deal. You wonder if they are right, and the fear of the possibility causes you to deal. Because none of the domino effect that come with getting rid these silicone nightmares are realistic at this point in my life I deal, and fight to ignore the burning ache. I hate them as much as I hate the numbness that consumes me and protects me from everything that tries to break me. I will always continue to smile and push forward. I will continue to try to embrace my reflection and love these things despite everything that makes me hate them. Even though the bullets of life continue to fire, I will not break, for I am, and will forever be bulletproof. 😍#mastectomylife #BRA

Life after fat grafting

Today I met with my general surgeon for my 3 month follow up in regards to the lima bean and baby pea sized masses we found last fall. The duo reside in my upper outer quadrant of my left "breast" (I don't even know what to call them anymore?) Ultra sound had revealed that they were just oil cysts as a result of my previous lipofill. As with any mass, I have to go in for routine check ups to document any changes. The drill is once a month, then every 3 months, then every 6, then once a year. If you can make it that long without any changes. So far, I can't seem to get past that 3 month mark. Luckily I love my surgeon!

The original cyst (lima bean) has grown a bit and is visible in my tanks etc. She feels confident we can drain it for comfort and cosmetic reasons, but I'm not worried about it at this point. She counted and measured another 10+ masses, I've literally become a braille book 😂 I'm not sure what the book is about, but I hope it's a good one! I have to go in for another ultra sound to be sure the new guys are oil cysts or calcifications as well. My surgeon does not seem alarmed, but wants to be safe and have documentation of them and their diagnosis. It is important to know what they are and be sure none of the new masses are hamartomas forming. If they are cysts like we suspect, we will leave them be. With how many I have, and how close they are to my implants there is nothing we can do about them without putting me at risk. Honestly, I'm over the whole surgery thing and wouldnt do anything about them if I had options. It seems thing one and thing two will forever be the lumpy twins 😂

I know to some there is confusion, and I've received many questions. How can a girl that had a double mastectomy still form lumps? I'm trying to wrap my head around it myself and am honestly becoming quite annoyed by it. I never thought I would still have to have routine visits consisting of "breast" exams, mass measurements and ultrasounds. But it does happen, and it happens more than you would think.

I hope this helps clear some of your confusion. I had a double mastectomy as a result of multiple reoccurring hamartomas that took over my breasts. Hamartomas are a rare tumor entity that little is known about. With certain forms of hamartosis breast cancer is almost certain (85%) no breasts=no breast hamartomas and no breast cancer. The decision was a no brainer and to this day I'm happy I did what I did. I am worth more than my breasts. LIFE is worth more than breasts.

It has been about 18 months since the surgery and I remain hamartoma free. When a mastectomy is preformed all breast tissue is removed, however, cells are microscopically small and there is always a risk of a few cells being left behind. This is why many women with breast cancer go through chemo/radiation to kill off any remaining cancer cells that could have been left behind. I did not have cancer, so I didn't have any of these treatments. Could a few cells been forgotten in the cut? Anything is possible. Which is why routine checkups are common, even post mastectomy, cancer patient or not. Any changes or masses found require examination. It's always best to be safe because that small 1% exists. I have been among that group a few times before. The 2 original cysts I had found last fall were the result of a very common surgical complication of the fat grafting I had done to my chest. As time goes on the fat in my chest is dying. The necrotic fat turns into oil cysts that calcify and harden over time if the body is unable to absorb them. While it is very annoying, and a risk I wasn't made aware of before deciding to continue with the fat graft, it happens and is seen often.

And so I continue forward with life taking it one step at a time. Just as I always have, me and the lumpy twins.

Be proud to be rare

I've been terrible at keeping up on my blog lately. You almost forget how quickly life flies by when you aren't contained to a bed or couch to heal. The days used to seem endless, yet now time seems so limited. In reality it always has been. We never know when our time is up. We are so quick to allow lack of time to be an excuse when really we should embrace the things we love because of our limited time. I think we could all stand to put our own desires first every now and again wouldn't you agree?

It was brought to my attention that I had never shared the findings of my most recent ultra sound with my blog readers. I do apologize for having kept you hanging. The two lumps I had found in my chest a few months back turned out to be oil cysts created by necrotic fat tissue; just as we suspected and prayed. It's been a couple months now, and my chest has turned into a giant dot to dot fun page, there are so many now, I can't even count them (sometimes you just have to laugh at the cards you're given, they really could be worse, at least you have cards). Some of the lumps are even large enough to see. Or perhaps my skin is just that thin. It's hard to get used to them being there. It gives that flash back feeling of the time you found that first lump, and you wanted to throw up. We were raised to detect masses in our breasts. What do we do when our breasts are removed? Its hard to ignore them and remind yourself that they are all cysts, all breast tissue has been removed, the ultra sound showed cysts. Its a mental game of personal reassurment. They are just another part of the foobs now, along with the indents and lines (they are back). I was upset over it in the beginning, but I've had time to accept them. They were a risk I took in going through with the fat transfer. A risk I was unaware of, but a risk non the less. I'm learning if there is a small risk factor of what "could" happen, to just expect it. I'm not a pessimist by any means, I'm actually pretty optimistic in life. It's just that someone has to make up those small percentages, I have a track record of being that girl. And I'm proud to be her. You're welcome.

Last week I got the call from Mayo!!! I'm next on the list and have an appointment with their genetics team Monday March 13th! I will finally meet with a team that is used to the rare percent, perhaps someone that has even seen breast hamartomas before. Around here most Dr's have never even heard of these things, let alone what could have caused them. Being that I had multiple, with a high incidence rate, my surgeon diagnosed me with hamartosis..which really says nothing at all, other than I had multiple hamartomas. Because hamartomas are so rarely found in the breast and go hand in hand with a number of genetic diseases, it is important to have genetic testing done to find which form of hamartomsis I have. It's important to not only understand the nature of said disease for my daughters future and the future of women to come, but to also know if I'm at risk of having hamartomas in other areas of my body. Areas that can't be detected as easily as my God given saggy mom boobs once allowed. Part of me doesn't want to go. I'm afraid to be honest. I had just finished part of my journey and was getting comfortable 'just living'. Sometimes it's easier not to know. But does not knowing change the truth?? The truth remains whether you've found it or not. It is important to push your fears aside, whatever they may be and fight. You should always fight for an answer, discover your truth, learn all you can, for your health, your future, and your children's future. Knowledge is power. Finding the answer can be a frightening process, but there is comfort and peace in knowing you did all you could. You never know, your bravery and fight could end up saving the life of another someday. Rare souls should be shared. You could be the very fuel that inspires another to write their story with pride. What defines normal anyway? Smile because you are that rare 1%! I know I am. I'm ready to crush this next step in this journey called life.

Grounded with pure intentions

I havent written a blog in months. Lately my thoughts have been jumbled and I've not been able to make sense of them. I'm learning that its ok to not understand why things happen as they do, or why I feel a certain way, or why sometimes I feel nothing at all. Those are the times we grow the most, because even when we dont know how we will make it, we do. I think the numbness is a coping mechanism, we all feel it at some point in our lives. Life is a messy, chaotic, crazy, beautiful adventure. There is beauty to be found in everything. Even if it takes years or even a lifetime to see it.

Since my last blog post I got nipples!!!! Or at least what I thought would feel like nipples. They were supposed to be "3d nipple" tattoos; I was told they would look realistic from afar. But they dont. Not to me. They are flat, tan stripey circles with what look like tiny hearts in the center. For as excited as I was to get them, I thought it would be love at first sight. Instead, I secretly hated them for weeks. Maybe I just got used to my smooth bare skin mounds? I had to adjust to my reflection all over again, and it took some time. They aren't my nipples, they aren't nipples at all, and they never will be. Once I stopped feeling disconected from my reflection and pointing out everything they aren't, I was able to find the beauty in them and see them for everything they are. Every scar, every indent or dimple, every imperfection uniquely mine, a symbol of my journey through life. My "fipples, as I like to call them, are my medals of triumph. A beautiful piece of art.

I paired up with a friend of mine for a finish line photoshoot. A display of raw emotion, of truth and light from the other side. A symbol of beauty and confidence. Proving to the world that a mastectomy is a beautiful thing. It is a symbol of life. It isnt a loss, but a gain. It signifies having won. It doesn't matter what lead to the removal of your breasts, you still felt every bit of that pain, it changed you forever, and the fuzzy drugged up memories will forever be etched into your mind. My fipples are my medals. I am no less of a women because I had a mastectomy, I am no less beautiful.

I had been sharing my photos on the wonderful world of facebook *insert gag* since the start, and many of you have been following me since the begining. You've seen me at my worst, yet for some reason I felt extreme anxiety over sharing my finish line photos. I almost canceled my shoot and arrived late after I forced myself to get in the car and just go. What did I have to lose? It would have been so easy to call everything off, never look back, and never write a blog again. Then I reminded myself why I began sharing my story in the first place. I was once the scared girl on google and pintrest searching post mastectomy photos through teary eyes. I wanted to read the experiences of others. I wanted to know it would be ok, and see what was on the other side. I wanted to feel something other than alone. I knew there were more women out there like me. And so i began my blog. I wanted to take my fear and use it to give hope to others. My intentions have always been pure.

Leaving yourself exposed and vulnerable leaves you open to a world of negativity and opinions. There have been times I've cried and wish I had never started this thing. Then Im reminded of all those that have reached out to me over the years, having thanked me for helping them through a journey of their own. And then I am grounded again, reminded of my purpose.

Last week I was reported on Facebook for my top less photos. This was the second time. The first time was funny, the second time broke me. I still dont know what to think of it, but I decided not to allow it to stop my mission. Never trade authenticity for approval. With that being said, I'm using my blog as a filter. I need my Facebook for my career, and I can't let someone that doesn't understand my mission effect my future. I have to protect myself.

In the middle of the whole being reported debacle a photographer took a risk by sending me a message asking if she could photograph me. When I accepted her offer she thanked me for not thinking she was a creep. She was so sweet, how could I not help her create her artistic vision?? We met at sunset in the middle of a field where I proudly stood top less in front of the lense of a girl I'd never met. I hadn't decided if I would be sharing this photoshoot with the world. You've followed me this far, why shut you out now? I hope you like them as much as I do, and that you see their purpose, and beauty in the way we intended.

Sometimes when one door closes, another one opens leading you into an adjoining room that resembles where you've been before. It all seems so familiar, except time has passed and it isn't the same room. You're on the other side now.

Two weeks ago I found two masses in my upper outer quadrant of my left chest area. I ignored it for a bit, and kept silent. I reached my finish line, I'm supposed to be done with this whole breast thing, the last thing I wanted to do was to pick up that phone and make an apt. I've been carrying this secret around with me afraid that telling others would leave them concerned and worried. Something my family and friends have become all too familiar with.

After some hesitation and confiding in a friend, I took a breath and made that call. I was over due for my 1 yr post op with my general surgeon anyhow. I thought for sure the lumps would be gone by my appointment. But they weren't.

Today I made the hour drive, walked through the same doors I did nearly two years ago with the lump that started it all. I sat in the same waiting area, and waited for my name to be called. The appointment began as it always has. A "breast exam" begining with the right side, followed by the left, only this time I have implants sitting where my breasts once were, and I couldn't feel anything but the pressure caused by her hands. She got to the spot and said "and there's your friends", grabbed her ruler and measured them for size. The new masses don't feel like hamartomas, the tumors that infested my breasts ultimately leading to their removal a year ago. This is wonderful news. There is indeed something there so an older was placed for a diagnostic ultra sound to be preformed. The hope is that the masses are made of necrotic fat cells, which would be common for being 6 months out from my first fat transfer. I'm waiting for the hospital to call to set the ultrasound up. Until then I will continue to live my happily ever after. This is just another part of my journey.

Adrenaline fuled by excitement

I can't believe it's been 2 months since my last blog post. Life continues to slip on by faster than I can keep up. Things are going well, and finally I feel like the end is near. I know I've said that a million times now, but this time it has to be true right?! I have been going to physical therapy for the past two months now to break down the scar tissue that was taking over my implants. Therapy came with many ups and downs and more moments of tears and ice packs than I'd like to admit. If there is one thing this process has taught me it is patience. Nothing is your forever. While some journeys take longer than others, everything eventually comes to an end.

Aside from physical therapy, a lot has happened over the past two months. I am slowly regaining my confidence and becoming proud of my body, imperfections and all. Going through a mastectomy is a lot. You never realize how an amputation of your breasts effects you mentally until you're there. I imagine it is a stronger mental battle for some than it is for others. Everyone deals differently and that is ok. We can't compare our emotions to those of others. While I would rarely admit, I really struggled for a while. Not so much for the loss itself, but for everything that came with it. Thankfully my down days are becoming few and far in between and I'm learning to embrace what is, and that is my health. With that I have found the ultimate happiness.

Since my last post I ran the Reagan run 5k for the very first time since my first lumpectomy 2 years ago! I was nervous tackeling the many hills of this race. Especially being newly recovered from using my legs as donor sites for my most recent fat transfer. My goal was to run the entire thing and to just be happy to finish. Let's be honest, I tend to put a lot of pressure on myself, set goals and become angry with myself for not reaching them. Thankfully I had some incredible friends there at both the start and finish line keeping me realistic with my expectations. I finished the race with a time of 27:11 placing me 18th out of 103 in my division. It wasn't my best ever, but it was the best I could do on that day with all things considered. Crossing that finish line felt exhilarating and reminded me just how much I had missed running.

Right before the mastectomy happened I was blessed to have been hired by an incredible company. A beautiful salon company full of many amazing women that were there for me through every surgery, every tear and every celebration. They aided me in my weight gain for the fat transfers by bringing me food and candy galor, they hugged me after Drs apts didn't go as planned and they laughed at my lame nipple-less jokes. I remember feeling sore and awkward just 7 weeks post mastecomy when I came in for my first day of work. Earlier this month I celebrated my 1 year anniversary being a part of this team and recently received a promotion!!!

On Tuesday my physical therapist broke up with me. We had another month scheduled out so I was very surprised when she smiled and told me she was done with me. I hugged her and cried. It was a bitter sweet moment, and another moment closer to the end. Unfortunately we were unable to achieve the desired results we set out for. We have known since day one my skin was very thin and had little give. She was able to stretch and thin out my scar tissue as much as my body would physically allow. A few trouble areas remain, but there is nothing more we can do. I was told the pain and discomfort is something I will always have. Because my skin is so tight and my implants are so heavy the weight and pull of them will forever be an issue. I still question whether or not I was given implants too big for my tiny frame. I really wish I had been given an option. All that aside, the foobs really are beautiful and perfect in their own way. Every time I move my arms my chest morphs and molds into a not so pretty state, but I will consider it my new super power. I am now a mighty morphing power ranger...or something like that. Indents, ripples and creases are back but only when I move certain ways, and I'm ok with that.

I am hopeful that I'm near the end this time. Adrenaline fueled by excitement is pulsing through my veins. I am another step closer. Because I was released from therapy I called my plastic surgeon and moved my follow up apt to next Tuesday. It seemed pointless to wait until mid september. If all goes well I will leave her office knowing the date of my award ceremony aka the day I finally receive my nipples and cross my finish line. ❤

A few miles to go

This past week has been an emotional one full of reflection. As I get closer and closer to the one year anniversary of my mastectomy I find myself overrun with emotions I never knew to exsist. During this time last year I was affraid and numb. I knew I was about to face the hardest thing I had ever experienced, and I wasn't sure how I would make it through. Life is full of ups and downs and at times it is hard not to feel as if we are stuck in a downward spiral that we will never make it out of. I am here to tell you that you will! No matter what you may be facing in life, better days are always ahead.

I tried my best to push through the hard times with a smile and grace, while internally I suffered from depression and numbness. I was happy, but secretly struggled with all that was going on. I am human, and so are you. It is normal to have moments of question when life deals an unfavorable card. But what would life be if we were constantly surrounded by sunshine and rainbows? We have to have storms to appreciate the blue skies. I have gone back a number of times and read my early blog posts as tears stream down my face, but these aren't tears of sadness, but of happiness. I remember crumbling on my bathroom floor telling my husband I didn't know that I could do this. I was so affraid, but now I am nothing but proud. I made it through the hardest race I've ever faced.

I met with my plastic surgeon today for my 8 week follow up from my last surgery. I went into this appointment so excited. This was the appointment we would discuss the plan for my nipples. I wanted nothing more than those medals to signify the end of this journey. Except things didn't go as planned, as they rarely do. Dr was very happy to see how beautifully thing one and two are holding up from this last round of fat transfer. It looks as if all the fat has survived and all ripples and indents are a thing of the past. The one large deformity that I had noticed on the right side (that I had accepted and chose to deal with) turned out to be my scar tissue slicing the fat in half and pushing down on my implant. I am in the begining stage of capsular contracture. The discussion of nipples will remain on hold over the next few months as I see a physical therapist at least once a week for the next three months to get it under control. Without therapy the contracture will cause my implant to deform, harden and can even suffocate my implant compromising it all together. I'm completely bummed out. I know the worst is behind me but I was ready to be done. I was excited for those medals of triumph and the end of the race. Turns out I have a few miles to go, but I will get there one step at a time. The end will just be that much more sweeter.

8 weeks post second fat transfer, and awesome tan lines.

Hat fun with my little after my apt today. She always knows how to turn my frown upside down.