Living my Pink life

It’s been a long time since my last update. I feel like I always say that. The reality is, I could write in my blog everyday. My mind is always spinning and I always have something to say! There are times I feel more driven to put my thoughts down and today happens to be one of those days! Lucky you! ūüėČ

Per usual, I will give you some updates and end on all of the positive this Pink life has given me! This past week I received the call that I had a new diagnosis of diabetes. My care team had been routinely checking my A1C in anticipation of this. Which was news to me! There are a lot of new studies linking Breast Cancer survivors to developing diabetes. There is a strong correlation to survivors who have undergone chemotherapy and even more so to those of us who are also on hormone blockers and/or are post menopausal. The lower estrogen levels have a strong link to diabetes. Receiving this news was a little disheartening at the time. It felt like one more little gift from cancer that I was not prepared for. Can I be honest here? There are SO many things that come AFTER cancer that we are completely unprepared for! I’ve always talked about life after cancer and what it actually means to be a survivor. I passionately feel that the HELL I went through fighting cancer and going through all of my treatments doesn’t hold a flame to be a survivor. I don’t want to go down the long line of things that make being a survivor so hard, but what I do want you to gain from this is some appreciation for the survivors in your life. I want all of you to know that we are truly FIGHTERS every single day in some way or another. But. I’m happy to keep fighting for this life I have. I am thankful each day for every second I have on this earth. That will never change. When you meet a survivor in your daily life, I ask that you have a little Grace and understanding that we are fighting every day, and the little simple things are not that for us. Give us a little space to fight our fight and know that not everything is as it seems.

THE same day as this new diagnosis, I was on a call for our 2021 P.ink mastectomy tattoo recipients! The universe knew I needed that! I am volunteering for the AMAZING Personal Ink non profit that gifted me my mastectomy tattoo in 2019 and changed my life! This opportunity was LIFE CHANGING for me. Now I get to volunteer and support this organization, the artists, and the incredible recipients! Meeting all of the survivors that get to experience this absolutely incredible gift this year is such an honor. Hearing their stories renewed the fire in me to keep fighting through anything that comes my way. I am so anxious and excited to watch these survivors heal and celebrate their beauty! Yet another blessing that my cancer have given me. I get such joy and strength being surrounded by other survivors. I am hopeful that I will have found a long term home with Personal Ink and can participate for many years to come.

Over this past few months I was able to participate in The Young Survivor Coalition Summit as well! As you are aware, I am a Colorado State Leader for the YSC. We had our summit via Zoom due to COVID this year. Despite the distance between us, we all got to spend time together and celebrate our survivorship. There is something amazing that comes with being surrounded by others that truly understand what you have been through or are going through. It’s a club no one would willingly sign up for, but we all enjoy and appreciate being a part of. Knowing we are not alone. Justifying our feelings and fears. When you walk around in your daily life as a survivor it sometimes feels like everyone is around you but you are not really a part of your surroundings. There are feelings both small and large that no one but another survivor can understand. You can never find the appropriate words to express to those around you and somewhat feel like your own species. Letting all of your guards down when you are surrounded by “your people” is so freeing. The jokes and sense of humor we all share with our survivor humor is so joyful. Being able to cry and speak openly with others who actually understand is priceless. Yet another tribe I unwillingly was initiated into that I am so thankful for. A cancer gift. My survivor sisters. My family.

Lastly, I have The Making Strides Against Breast Cancer walk coming up this October! I am an executive ambassador committee member for The Making Strides Against Breast Cancer Walk with the American Cancer Society! Last year we were unable to have our in person walk due to COVID. This year, we are ready to walk together as survivors, in support of those we have lost, and together as a team! The American Cancer Society continues to raise awareness, funding for research, and support for survivors year after year. The different programs they offer and uses of their funds are truly for us. For survivors, for research, for rides to treatment, for mentorship, and many other genuine causes. For me, walking on this day is celebration of my fight and my life as a survivor. On this day, I am surrounded by friends and family who will celebrate and walk by my side with joy! It’s a way to raise funds for all of the wonderful contributions the American Cancer Society makes to the world of Breast Cancer, My world.

With that I will end my shortest blog entry with saying to all of you, thank you. Thank you for loving me for who am I as a survivor. For allowing me to participate in the organizations I mentioned as they all give me more fight that I thought I could have. Thank you for supporting these organization to allow them to change peoples lives like mine. I know that I may appear as a broken glued together mess of a person after my life journey thus far, and that may be so. But, I see a beautiful, colorful, pieced together mosaic or a stained glass masterpiece! Take in my beauty friends! Its all I’ve got!

My Letter to Cancer on This Day

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This is a letter to Cancer today which marks 4 years since I had my mastectomy.

 

Dear Cancer,

Wow what an impact you have had on my life in so many ways! You came into my life out of no where and I really was not prepared! Just 12 days before we officially met I married my puzzle piece, the love of life. I do appreciate our introduction waiting until after our special day~! Our “honeymoon stage” quickly turned into everything about you. At first I was so angry but in hindsight I am so thankful. Although a honeymoon stage would have been fun, there is something about fighting for your life together that makes an unbreakable and unique bond. Instead of wearing cute lingerie and traveling places looking my best, he got to see me bald, hold me while I cried myself to sleep, listen to me literally shit my brains out all night while I slept on the toilet, kiss me before I went back for surgery after surgery, briefly see me during my lunch breaks when I would somehow make it home sobbing trying not to shit all over my car all while being in excruciating pain, he sat by my side while “friends” quickly fell away, he kept very organized lists of what meds he gave me at what time, he laughed with me when I could laugh at myself, and he would watch me ugly cry until I fell asleep. I really hated you for that. Today I’m thankful for the gift of true bonding. Thankful for the opportunity to build a raw, real and true base for our marriage.

Not to offend you, but hearing the words “you have cancer” is absolutely terrifying. I literally dropped to my knees and cried. At that time I feared you only for what I had heard about you. I had no idea the relationship we would build and all of the gifts you would give to me. Don’t get me wrong, you were a real bitch at times. I was brought to a new level of lows, fear, anxiety, and stripped of everything that really kept me comfortable. I mean come on, you took all of my hair! I would never choose bald for me! Although I learned that as much as I love my hair I don’t need it! Another thing I learned was how to do my eye brows and how much better I looked when I paid attention to them! My face without eyebrows is a bizarre look! So hey thank you for the crash coarse in eye brows! I learned a lot about the “face value” of my physical looks. For the most part you made me really understand how unimportant all of those things are. I say for the most part because I still have moments when I look in the mirror and see this new person I have become and I cry because I wish I was skinnier, I hate my post menopausal body, I wish I could wear a sexy low cut dress, I hate the looks I get from complete strangers who I can tell are trying to figure out if I’m a transgender or not,  or I wish Ty and I could have had just 1 baby.  Outside of those moments of weakness I’m thankful. I’m thankful to be more comfortable in the skin I fought for than I ever was before all of this. When you walk through the literal hell I went through to just be here with your husband and watch your kids grow you have a whole new appreciation for the skin you’re in. I put clothes on that are size 12 when before I met you I was a size 4. I’m a pirates dream because I have a sunken chest (badum tiss) and I haul around this sexy keg in my stomach but I look in the mirror and I smile because I get to live each moment to the fullest. I still wear the clothes that are my  “style” even though I’m sure I look odd sometimes because dresses are not made for concave chests. Take me as I am or not at all!

While I was walking step by painful step through the hell you took me through I never gave up the career I worked so hard for. I actually threw myself harder into work as it gave me a push to get up and put myself together every morning. It would have been so much easier to lay in bed and sleep the day away but I never did. In some ways I regret how hard I worked. I would sit for hours at an infusion with my laptop working and go to work each day following that. I would take 22 + immodium in a single day all while working through the insane stomach cramps and running to the bathroom over and over and over. I would lay the seat back in my car with the A/C blasting and cry and try to nap from the exhaustion. My radiation appointments were at 7am so I could be on time to work. I ended up finally quitting the job I was in due to an absolutely awful person who was on a mission driven by jealousy to run me into the ground when I was fighting to keep my life. On a little side tangent, she portrayed herself as a “good christian woman” on the outside but is one of the most selfish, mean hearted, manipulative, lying people I know. My interactions with her made me question my faith like it has never been questioned before. After making the decision to not work and just fight another great career opportunity came knocking and I took the opportunity. This was the time you, Cancer, thought I should be paying more attention to you. I developed intense infections in my chest wall and ended up having 3 back to back surgeries that would completely change everything. I continued to push through work which sometimes I also regret.

October of last year I was selected as a recipient of an INCREDIBLE non-profit to receive a mastectomy tattoo. At the time I applied for the opportunity I had made decided that if I was chosen it would make my decision not to attempt reconstruction for the 4th time. While going through the incredible healing that I experienced with receiving my mastectomy tattoo with P.ink Denver, I met some incredibly beautiful women who you know as well. The most amazing thing was seeing how strong and beautiful they all were after meeting you. Some only see the HELL you have brought but I have seen so many beautiful things and met some truly amazing people that you have touched.

Today marks 4 years since I had my mastectomy. 4 years. I cannot believe it. It’s a day to celebrate but it’s also very emotional to remember everything we’ve been through. I want to end this letter to you today by saying THANK YOU for all of the gifts you have given me and for making me into the woman I am today. I am proud of who I am and can only hope that my husband and children see me and feel the same.

Happy 4yr Cancerversary!!?

December 16th, 2015- I got impatient and called Kaiser looking for my breast biopsy results. I had only had my biopsy performed 2 days before, but I was jumping out of my skin with anticipation. I just wanted them to tell me there was nothing to worry about and I could move on with my life and put all of this behind me. The nurse that took my call was a dead giveaway looking back. I told her I was very nervous and was hoping I could get my results, she pulled me up, pulled up my results and was immediately uncomfortable. “Uh. I’m going to have to have a provider look at your results and call you back, I’m so sorry I cannot release your results.” In record time, my phone rang. I answered the call and heard the callers greeting “Hi, Erin this is Shalom, I am a breast cancer coordinator with Kaiser”. Yes, you read that right. Immediately my heart sank and it felt like I was frozen in time. I could hear her speaking and I seemed to be understanding what she was saying, but time was moving slow, and I could hear my heart beating loudly in-between my ears. She told me I had breast cancer and that it was triple positive and that she had made several appointments for me the 1st being an MRI I needed to have done the next day. I remember her being very kind, but I did not absorb much that she had said to me. She told me that she would be emailing me over everything we talked about so that I would have it to reference. Then she kindly asked if I had any questions. Questions? None that I could verbalize. Am I going to die? How long do I have to live? What about my boys? I just got married, I finally found true love and now he has to watch me die? Does he have to? He didn’t sign up for this, we should get an anulment or divorce so he can live a full and happy life. Oh my God, how am I going to tell my kids that I have cancer? How could God let this happen to me? Why me? I kindly responded to her “Thank you so much for calling me and for all of your help. I will watch for your email. I don’t have any questions I can think of. I’m so sorry I was so impatient and that you had to call me, I’m sure you have a thousand of other things you need to do.”

Wide eyed and still feeling as though the world around me was frozen in time, I walked to my boss’s office and shut the door. She and I locked eyes, I fell into her arms and crumbled into a mess of tears and fear. I don’t really remember driving home, or calling my husband or anyone else to tell the news. I made it home and I sat in my car parked in the driveway. The silence was terrifying and my mind was moving so fast I couldn’t keep up. I saw my husband in the rearview pull up in his truck and make his way to me. I got out and fell into his arms sobbing and shaking. With tears in his eyes he held me and told me he loved me and that we were going to get through this. From here there is a lot of holes in my memory. We did not tell the boys. I needed to know more before I began to walk down that road. I remember going to my MRI, my husband drove me thankfully because time around me was still frozen and I seemed to somehow be moving and going through the motions subconsciously.

A few days after that MRI we went to meet with a general surgeon who sat us down to really explain my pathology and diagnosis. She told us that I would see an oncologist who could better explain things to me, but that I would need a mastectomy and chemo, and that I would lose my hair. Hearing that I would lose my hair was like someone kicking me in the gut. I lost it and starting crying harder than I ever had. I remember her telling me that it was going to be hard, that I would need to write off 1 year of my life to fight this and then things could get back to normal. The world around me was frozen again as we completed this visit. When I got into the car to leave, my phone rang and it was the oncologist office telling me that had a “cancellation” the next morning and they had put me in it. I learned afterwards that this was not true, that he had received my pathology and wanted to get me in ASAP. I can understand that calling someone as fragile as I was and simply stating we really want to get you in ASAP might not be received very well.

I saw my oncologist who explained my pathology and explained that it was hormone receptive and aggressive and that meant that hormone’s where what ”
fed” my cancer and we would need to remove my ovaries. Wait. First you’re going to remove my boobs, make my hair fall out, and then take away my ability to have kids? I’m only 28! We would need to be aggressive to beat this and start right away. How can this happen to me? This isn’t fair. Why me? I slowly looked at Ty with tears falling down my face. My oncologist just told me I couldn’t have anymore children. Ty and I couldn’t have a baby together. I wouldn’t get to see him look into the eyes of our newborn baby. We had waited our whole lives to find each-other, the real love you see in movies or read about in books, and in an instant everything changed. Our love would never waiver, but our “honeymoon” phase quickly turned into
“survival mode”.

All of that said, I had received my cancer news December 16, 2015 and that date marks my “cancerversary” the anniversary of the day I received that phone call and heard the words ” you have breast cancer”. So why would someone celebrate this? Celebrate a “cancerversary”? Well. The thing is, that day my entire life took a detour, everything changed, and I’m STILL HERE. I realize and appreciate all of the wonderful gifts I’ve been given through this journey, how incredible my marriage is, what a badass I am, and that life is worth celebrating. Some survivors celebrate their “cancerversary” on the date of their mastectomy, or when their oncologist told them that at this time they were NED (no evidence of disease) * because well we don’t ever really get to hear the words “you are cancer free”. Sure each day is still a fight and I still have a lot of treatments, depression, fear, pain, and uphill battles, but I celebrate my ‘cancerversary’ because 4 years ago I got news that could have broke me, but I’m here. I’m watching my kids grow, loving my husband each and everyday as if there is no tomorrow. That is worth celebrating.

 

Finding Me Again

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See above. This is exactly the process I am right in the middle of! December 16th of this year, will be 4 years since being diagnosed with Breast Cancer. After all of this time I am finally “Blossoming into a badass woman with more faith than fear”.When I sit and think about just how much I have overcome I surprise myself with just how much I have been through. This journey will never be over, it is a part of who I am and the life I have been given.

Over the summer I finally went back to my oncologist after shutting them out for almost 2 years. Why would I do such a thing? Thanks for asking, I’m happy to explain. The oncologist I was seeing was not listening to me, he would respond to my questions and concerns with comments like ” You have PTSD and that is very normal for all breast cancer patients, and even more so with you being so young” or ” I would like to give you a referral to talk to someone about depression and PTSD because they are a very real part of being a survivor”. Needless to say, I was angry and defeated. Do I have PTSD? Do I struggle with Depression? Abso-fucking-lutely! Do I deserve to have a care team who listens to my concerns, orders the diagnostic tests I need, helps me work through the side effects and pain, and doesn’t treat me like what I feel doesn’t matter? Yes. We all do. We all deserve to be listened to, to not just be a statistic, to be taken care of, and to matter.

When I broke down and went back, I saw a new oncologist. She listened to me, she cared, she agreed with my concerns, ordered the tests I needed, changed medications I was on, referred me to physicians I needed to see, and in that 30 minute visit she turned my confidence around. Fast forward, I feel better on the new medications I am on, my symptoms have been explained, and I am healing. I have learned and accepted that I do have PTSD and I struggle with Depression. I work on these things everyday, and some days are harder than others. The medication I am on now has given me less side effects and the side effects I do have don’t make me as miserable. I started a new infusion that I have to do every 6 months for 3 years. This medication should help prevent bone mets and help strengthen my bones. I have been surgically post menopausal since I was 29 years old. One of the biggest side effects from this is emotional. Emotionally accepting that I was unable to ever have anymore kids. We are lucky enough to already have our 2 incredible kids, but never ever being able to have kids if I wanted to, and not being the one to make that decision was a big emotional blow. I thought working through this was going to be the hardest part. I’ve accepted this the best I can, and for the most part hold myself together. Other than the random meltdown from time to time. But, I’ve recently figured out how damaged my bones are from lack of hormones. My DEXA results showed Osteopenia borderline Osteoporosis. We are hopeful the infusions I am on with help my bone strength. I had my first infusion and it literally KICKED my ASS. I ended up in the ER and admitted for pain control. With all the pain I have been through in this journey, this infusion is what put me in the ER? I cannot explain the pain, and with the pain came uncontrollably high heart rate, pouring sweat, and inability to stop shaking. I am scheduled for my next infusion December 27th. My good Ol’ PTSD is peaking its head out and giving me quiet a bit of anxiety about it, but I know I will get through it just like everything else! We are going to start me on steroids when I receive the infusion and I will begin pre-medicating with ibuprofen and Tylenol for the pain, in hopes that it will make this infusion easier than the last.

Enough of that, let’s talk about my bad-assery!!! As you all know I attempted reconstruction and went through literal HELL during the process and ended up without reconstruction. I’ve been waiting to let my body heal before making the decision to reconstruct again, but have just not been able to do it. That’s a little of my Ol’ friend PTSD, and a lot of refusing to go through that amount of pain again. I know most of you think I shouldn’t feel like I need to reconstruct and that I am beautiful the way I am. I appreciate that more than you know, but I am the person who has to love my reflection in the mirror. I don’t want to re-hash all of the changes my body has experienced but just know its a lot. When I would look in the mirror, having no breasts is not the problem. the scars from my mastectomy, the burns from radiation, and the remnants of infection took over my mind and emotions. I’ve hated the image in the mirror but refused to even think about attempting reconstruction again. I was reading through some of the breast cancer survivor groups I am a part of and someone had an amazing mastectomy tattoo which prompted my research. I came across P.ink Denver and filled out the application to receive a mastectomy tattoo from this incredible non-profit. I received a call from Karen who is truly such an incredibly beautiful soul, and she gave me the news that I had been selected to participate in the P.ink Denver day! First of all, I never ever get picked or “win” anything other than being the lucky person diagnosed with Breast Cancer at 28 years old! The few weeks I had to wait felt like months and I couldn’t sleep!

P.ink Day arrived! That morning my alarm went off, but I was already up because I didn’t sleep from all the nerves and excitement. The snowy drive in my stomach felt like the entire butterfly pavilion was in my stomach. What an amazing experience. I was surrounding by warriors and survivors who all had different stories and battles, but regardless we were all there together to lift each other up and cheer each other on. My artist, Sal Tino is truly a gift. I am so grateful and appreciative of his heart, his talent, and motivation to give and help me heal. His artwork left me speechless, he is so amazingly talented. My fears of pain were true, I cannot explain how much it hurt. We started with my cancer side which has experienced so much trauma. Cancer, surgery, radiation, and multiple infections. I knew the pain was going to be intense, but have to admit I was envious of the women there who were lucky enough to still be numb from their mastectomies. I may have been green with envy, but the green in the leaves of the peony Sal created on my chest is far more beautiful and left me with nothing more to desire. This piece of art is beautiful and took away ‘cancer having the last word’. Towards the end of my 6 hour tattoo session the combination of the physical pain and the emotions erupting inside of me created a massive teary meltdown I could no longer control. As my body uncontrollably shook and the tears poured down my face, I ugly cried in the presence of the some of the most beautiful people. The reveal of my tattoo brought more ugly crying and tears of gratitude, appreciation, awe, thankfulness, sadness, happiness, and pretty much every emotion you can imagine. P.ink helped me heal, helped me love the image in the mirror, restored my confidence, and has introduced me to this new confident bad ass woman I am developing into. For those of you reading this who have asked me how they can help me, to let them know if there is anything you can do, please support and give to P.ink. The gift they give to survivors is truly incredible. I could go on and on about this amazing organization, but there is likely a better platform for that where maybe it would make a bigger impact and difference. P.ink needs the support from all of us as the gifts that us survivors receive are priceless and help our healing more than words can explain.

In addition to my incredible P.ink experience, I finally made the decision to take time off for me, before I start on a new adventure in my career. Let me repeat this, I. TOOK. TIME. OFF. Yes, you read that correctly. One of my biggest regrets is working so much and not allowing myself to catch up and heal through all of my treatment. I am currently enjoying time with my husband and kids and taking a nap every single day. I’m healing physically, mentally, and emotionally. And I am loving every single minute.

At the start of 2020 I will be embarking on a new journey in my career that I am very excited about. I believe this move will be my forever home and I am eager to start this adventure! I am also very thankful for my oncology nurse who approved my infusion to be completed 2 weeks early so I can start my job after recovering from the infusion. I am also scheduled to complete my tattoo with Sal on December 2nd which I cannot wait for! 2020 is a New Year that holds so many bright things, I can’t wait! I’m on the road to finding me and I am grateful for every blessing.

 

Rainbow of Emotions After Cancer

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I was so incredibly under prepared for being a Survivor. There are so many different organizations, support groups, meal trains, and people seeking to help you when you are going through your Cancer fight. I wouldn’t ask to change that in anyway, however; Survivorship is no Cup of Tea. Heck it’s not even something cute like ‘whiskey in a tea cup’. Being a survivor is so hard. Painfully challenging at every turn. Hey look, I’m not unhappy or complaining about being a survivor, but it would have been so nice to have a little more of an idea of what to expect.

I titled this entry “Rainbow of Emotions After Cancer” because I don’t really know how else to explain the wide range of emotions, challenges, and blessings survivorship entails. I’m going to do my best to walk you through this . Following my last Herception Infusion I was now NED (No Evidence of Disease), and not in “active treatment’. Ok! This is fantastic! I made it through the ‘hard part’ and was well on my way to living the rest of my life! The thing is, there are so many miles left in this journey and it is not down hill. Quiet the opposite really. To best describe what I’ve been going through, imagine a helicopter dropping you off in the middle of a very hot jungle, blind folded, alone, with clothes that don’t fit, you’re overwhelmed with anger, sadness, lonliness, depression, your absolutely terrified, can hardly keep your eyes open from exhaustion, and you have not a clue what’s ahead of you.

The helicopter ride is exciting, you’re view above the clouds is so beautiful and the feeling of floating is breathtaking. This is how you feel when you’re no longer in ‘active treatment’. You’re enjoying this helicopter ride to what has to be paradise which is what you anticipate your life will be without all of the pain, sickness, unbearable side effects, and poking and proding. All of the sudden it’s hundreds of degrees everywhere you go, constantly sweating, the hair you’ve worked so hard to grow is dripping in sweat, you have 2 fans at your desk to get through the workday, you now sleep with a fan at all times, feelings of nausea and dizziness constantly follow you around no matter the circumstance because it’s so dang hot. Why? Well, because you’ve been surgically post menopausal since you were 29 years young in order to shut down your bodies hormone production because your Breast Cancer was hormone receptive. No hormones gives you the lowest chance of reoccurance. To top this off, the Tamoxifen you take daily wreaks havoc on your already miserable body. Even more intense hot flashes, night sweats, and bone/joint pain. Yipee!

You push past the heat, and pain and reach to your left and right hoping someone is there with you, anyone at all. The realization that you are on your own, and everyone that was surrounding you on the ride you took to get to the helicopter pad is gone. The thing is, so many people pull together in many ways to try to support you however they can think of or are able to while you fight your fight. There are some that come out of no where, people from your past, others you meet along your journey, those who are there for their own guilt, others who enjoy some of the spotlight they may get from being there with you, your many doctors and nurses, and fellow breast cancer sisters. The thing is, for some reason, when you board that helicopter, there isn’t anyone who wants to take the trip with you. I’m not sure if this is lack of knowledge, boredom, busy schedules, or maybe the journey they thought they signed up for wasn’t suppose to be this long. No matter the reason, you are so lonely. Stumbling through the hot jungle alone with your thoughts is enough to quiet possibly drive you crazy. There are so many voices you can’t seem to shut off yet the silence is so uncomfortable it’s painful. You can’t help but feel so angry and sad that there is no one on this trip through this jungle with you. Wait! All of the sudden a phone drops out of the sky and you hear someone on the other end of the phone say something to the effect of “i don’t understand why you are in the jungle. I thought you were on a beautiful helicopter ride and back to normal”? The tears start to uncontrollably run through your blindfold as you realize you will never have your normal back and this blindfolded lonely hot jungle is all you have left.

Is it nap time yet? Keeping your eyes open throughout any day has proven to be it’s own challenge. Why are you so stinking tired? I’ll answer that for you. Your body is absolutely run down. All of your cells are trying to repairs themselves from the literal hell you put them through with Chemo, Radiation, and more surgeries than you can count. Give your body a little Grace and space to rebuild and repair. What do you mean you can’t give your body a break? Working so hard everyday to pay off the debt you’ve been gifted from your stacks of medical bills need paid off, your growing kids want to play, your beyond amazing husband wants to spend time with you (not sleeping), the house needs cleaned, the books you love need read, the groceries need bought, you don’t want to let anyone down because its not their fault you got cancer, and the 2 hours a day you drive is so worth the heaven you get to call home. Rest when you can. Nap when you can, go to bed early, and take care of yourself.

You pick each foot up and put one in front of the other because you have to keep going. There is a reason you are in this jungle, there has to be a reason. For some reason each step not only hurts your body as pain has been gifted to you to carry with you no matter where you go, but some of the clothes you have on are falling off, some are so tight you can barely move. This strange body you have is much heavier than you’ve ever known (thanks menopause!), and the clothes you have aren’t really made for a woman with a very painful, concaved chest. Let me tell you how exciting it is to push through the pain you feel when you get dressed in clothes that don’t flatter your body in anyway. But let’s be real, is there a clothes line out there that exists for a funky figure like this? The answer is No. (Someone very talented feel free to create a flattering clothes line for women like me!) After you push through the physical pain and wipe your tears, you stand in front of the mirror and you can’t help but smile. As funky as your body is, how awkward you look standing in the clothes you have on, you smile because you are so uniquely beautiful! Your scars are breathtaking, they show your fight, your strength, and you can see that beneath those scars your inner beauty is shining. The thing is, you feel all of these things everyday. It can be exhausting to feel so many ranges of emotions everyday. I mean come on, I often work through every emotion in the rainbow in any given day! The best part though? Wow I have fought for this funky body, and I rock my awkward wardrobe because I am so proud of the me I am!

Back to the jungle. When you are blindfolded and you don’t know where you are and you’re trying to make your way forward, some of the biggest emotions of that rainbow you feel are fear, depression, anger, and overwhelming happiness.  You are so angry that you are in this damn jungle you can’t stand it. You just want to know and understand why you are here and what you did to deserve this. You’re so depressed at all you’ve lost and how long your journey is going to be. The thought that you may go back to active treatment and receive another diagnosis all over again, or you somehow don’t find your way through this jungle is terrifying. Every little thing you feel in your body panics you into a hole you can’t seem to escape. But the best feeling? Overwhelming happiness. You are so happy to be in this miserable jungle, alone, hot, lost, afraid, in clothes that don’t fit, because You. Are. Alive! Not only are you alive, you are tougher than you could have ever imagined being, thankful for the little things, and so uniquely you.

Before you know it, a cool breeze comes along and its not so hot, your blind fold blows off, you embrace your rainbow of emotions, and you become a guide for others who are dropped off at the same helicopter pad. You revel in this new body, your unique beauty, the ability to feel so much, the many naps you take, the small circle of truly amazing people who are by your side, the fact that you’re never cold, not being lost in a crowd, and getting to live each day full of thanks.

Choices

Choices

I realize it has been a long time since I’ve updated this. In the time since I last updated I’ve come to the realization that being a Survivor is much more difficult than going through all of the treatments. All of the physical pain doesn’t seem anywhere as hard as the daily struggles I fight through now. Exhaustion, fear, insecurities with my body, grief of everything I’ve lost, acceptance of my new “normal”, all of my favorite post menopausal symptoms, and did I mention fear?

It has been 2 years, 1 month, and 21 days since my bilateral mastectomy. I have an upcoming appointment with my plastic surgeon to revisit the discussion of reconstruction. As you are all aware, I attempted reconstruction prior and truly gave my all. My body could not handle it. The pain was something I will never have the words to explain. After the 3rd time I was taken directly to surgery from my plastic surgeons office due to yet another infection I decided to walk away for a while. It’s been 1 year, 8 months, and 14 days since my last surgery on my chest. October 25, 2016 was the last time Dr.Kiehn took me from his office to the OR to remove the infected expander and to remove as much of the affected tissue as possible. Since then I’ve shut of my mind the best I could and took a break from all of doctors appointments. I’ve been being a momma, wife, daughter, friend, ect.

For the past few months I have not been able to find anything loud enough to drown out my thoughts and worries about reconstruction all over again. Out of no where my thoughts and heart are weighing so heavily on me daily. This coming Friday I will meet with Dr. Kiehn for the first time in a year and a half. I want to revisit the discussion of the DIEP surgery and ask all of the questions circling through my mind. I don’t know what I’m going to do. This surgery very much feels like the final step in this process. I want to get through this and continue my survivor fight. This last “treatment” has always been the last thing on the “list” I had originally made once I was diagnosed.

What I seem to be struggling with is the “why” behind this surgery. I have made it through more than I could have ever imagined I could. I am here. I am alive. Yet, I feel so uncomfortable in my own skin. I can’t help but emotionally struggle often with the “why” behind this and feel somewhat disappointed in myself for wanting this for myself. I should be proud of who I am and carry my head high. The truth is, I don’t. This body is so foreign to me and I feel like I’m living my life in someone else’s body daily. Will this surgery change that feeling? Will this surgery make me feel any better? What if I have all of the complications I had prior? What if I can’t handle the pain? I’ve enjoyed sleeping in my husbands arms in our bed. With this surgery I can guarantee I will be back attempting to sleep in a recliner followed by months of exhaustion from the inability to sleep in my bed. I know this seems so minimal, but I did this for months and still to this day don’t know how I did it.

It’s a beautiful Sunday at home with my family, my heart and soul. I’ve been very distracted by my wondering mind. My husband and I sat and watched a DIEP surgery condensed to 47 mins while the boys played in their pool. I was hoping watching the surgery would give me some sort of clarity, but nothings seems to help me make a decision. I’ve promised myself that I would not make a decision or commitment unless I am 100% confident either way. This is proving to be more difficult than anticipated.

Below is a screen shot from the ending of the DIEP surgery we watched today. My surgery would be very similar except it would be both breasts being reconstructed from my abdomen. I will have many surgery sites to heal. Both breasts, the incision I will have from hip to hip, and the belly button they will create. My surgeon says I will be in the ICU for 24 hours after surgery, and then in the hospital for 5 – 6 additional days after that. This is a MAJOR MAJOR surgery. Nothing about this journey of mine has been easy, but it has all been worth it I can say that with confidence. I am so thankful each day for the many many blessings I have.

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The Battle Doesn’t End When Treatment Stops.

FullSizeRender (2)I know. It’s been about 8 months or so since I have updated this. I’ve thought about updating over and over again, but each time I try I seem unable to find the words. Here’s the thing. I finished treatment in January of this year. (WOOOOOO!!!!!!) Each and everyday following my diagnosis I counted down to “the end of it all”, which I was positive was the end of my treatment. Man I could not have been more wrong. Everything from my diagnosis through the end of my “treatment” was NON STOP. I could hardly breathe somedays. As painful and terrifying as all of that was, the challenges I face now on some days feel much harder to overcome.

My diagnosis and all that entailed was so emotionally and physically draining. I pushed through each day and each step of the way knowing that as I crossed these things off of my list the closer I was to being healthy again and BEATING Cancer! My treatments, including all of the many complications that went along with them, were physically, mentally, and emotionally challenging. However, as challenging as each day was, every second was worth it for my life. To spend my life with my husband and raising these phenominal, smart, funny, exhausting, make me want to pull my hair out, sweet little boys.

Fast forward to the place I am in now. THIS battle is really hard. Really really really hard. Life as a survivor is very challenging. No one prepared me for this new life I would have to accept. I am strong, and I beat Breast Cancer! I know you’re thinking, “this is the easy stuff” “she should be happy to be alive” hey, you may even have the lyrics to that Tim McGraw song “live like you were dying” going through your head. Which by the way, there are parts of that song I do live. “I loved deeper, and I spoke sweeter, and I gave forgiveness I’ve been denying”. That is all very true. I have not, however, “went 2.7 seconds on a bull named Fumanchu”. Mostly because as scary as everything has been I am not and will never be fearless. Today, what I am afraid of is this new me. I am trying my best to get to know her, appreciate her, accept her, and love her. I have the remains of the body I had before, there are many missing pieces, so many added scars, a heart that is so strong, many many added pounds, and a whole new proportion to my body that I am trying my hardest to embrace. I had no idea about the aftermath following treatment. The struggles of trying to love and embrace the body I have now, the loss of so many relationships, the physical pain I continue to experience each day, the continued fatigue, the constant worries and fears about re-occurance, the fears and insecurities I carry with me, fighting off anxiety and depression, finally beginning to accept and process my diagnosis and treatment, mourning the loss of my ability to have children, being post menopausal at 30 and processing everything I have been through.

Listen, I understand that this all seems silly, and you all think I already made it through the ‘hard stuff’. For the most part, you would right. Yes, i have made it through some of the hardest challenges of my life, and I AM A BREAST CANCER SURVIVOR! I just didn’t realize what being a survivor entailed. I am so thankful and blessed to be a survivor, and each day is truly a blessing. I continue to grow and accept this “new me” and learn how to manage all that comes my way. I am not the same woman I was before my diagnosis, and although it has proven to be very challenging, I am so proud and excited to get to know this better version of me, the version I believe is the best version of me. So hang in there with me, while I date myself and get to know and fall in love with me. It’s going to be amazing, I just know it.

Blessed by my cancer diagnosis

Blessed by my cancer diagnosis

It’s been a very long time since I’ve updated for many reasons. There has been a lot going on since my last post. After starting a new job I experienced so many unexpected infections and surgeries, 3 surgeries in 3 weeks to be exact. During the entire time I was going through by FAR the absolute most painful time in my life. The pain was so intense and unrelenting that I could barely breath at times. There wasn’t a day I didn’t cry, there wasn’t a night I got more than about a hour of sleep, I was over loading my system with several different medications every 6 hours to make it through each day/night, I could barely eat from the pain, there were a few evenings leaving work that as soon as I closed my car door I absolutely lost it hysterically bawling my eyes out after spending the entire day with a  smile on my face and pushing every limit I’ve ever know to make it. There were a few nights I cried to my husband telling him I couldn’t do it another day more, I couldn’t possibly live one more day in so much pain. Terrifying doesn’t accurately describe my overwhelming pain and desire at that time to just give up. I made it home safely a few nights only because I pulled my dress off and drove topless (very tinted windows of course) because the pressure from any sort of clothing was unbearable. I would schedule appointments around what little time I had to see my plastic surgeon or call the nursing team in tears begging for relief only to be constantly told that the pain was normal. I know now that the pain was absolutely not normal, but I guess how are they to know what each patients pain tolerance is? Mastectomy, expanders, and reconstruction are a very painful process. But, the pain that I experienced was obviously no where near normal. I was suffering everyday from the pain, lack of nutrition from not being able to eat, complete exhaustion from not sleeping, and as much as I jumped up and down crying for someone to help me, I felt like no one was listening. And, to be completely honest they weren’t. 3 surgeries later, I was finally able to experience some relief. Each surgery would come unexpected and I would take only the surgery day off and I would be back to work the next day. Starting a new job when you have cancer is really challenging for all of the normal reasons, but starting a new job and having 3 unexpected surgeries in 3 weeks makes it that more difficult. Going to work after each surgery was exhausting and painful, but each surgery to remove the infection gave me more and more relief. The pain and exhaustion post surgery was nothing compared to the misery I was already experiencing. I don’t have expanders anymore and I am so happy and blessed to have an appetite again, to be able to sleep at night, and be gaining the normalcy of my life back. Everything was going well until I developed a fluid filled bubble on my left incision. I did a round of antibiotics that did not fix the problem. So, I went in to the plastic surgeon where they gave me a lidocaine shot in my chest, used a scalpel and cut open the area, drained the fluid, cleaned out the pocket where the infection was, packed it with gauze, and left it open to heal. Knock on wood but since then, everything has been healing as it should. Shortly after all of these problems, I had my complete hysterectomy where they removed my uterus, cervix, tubes, and ovaries. The reason I needed this was the fact that the pathology of my tumor was hormone receptive which means that the hormones in my body were essentially feeding my cancer. In order to have the best chances of not having a reoccurrence it was best to completely remove any hormone from my body. There was and still is an awful lot of emotion surrounding this surgery. It’s very difficult to be 29 years old and to never ever be able to carry a child again. But, on the other side of that, it is absolutely essential to my life with my husband and boys that I do everything I possibly can to have a long healthy life with them. I took the suggested 6 weeks off after surgery which I am incredibly thankful to have had. By the time of the surgery the past year had really really wore me down more than I could have ever dreamed. The time for my body to heal, to catch up on rest, for my mind to heal, my heart, and my soul. 2 weeks ago I completed my last port chemo, and last week I had my port removed. At my last infusion it was a very surreal feeling. I was so happy and proud that I made it through all of the hell that chemo is, but at the same time, I was sad. I had been going every 3 weeks for the past year to the infusion center and after that day I wouldn’t have to go back. I knew I was going to have a new norm, but it was sad to lose the normal I was used to. My oncologist had been preparing me for a few months for the completion of treatment and the normal emotions and feelings that go with it. your life is chaos organizing each day to fit the hundreds of tests, surgeries, and treatments after your diagnosis. When you complete treatment you feel a little lost, you feel scared that you aren’t doing anything to fight cancer anymore, and terrified it will come back. Each little thing you feel your mind and heart can’t help but fear that it’s cancer. The only thing that you can do is take a deep breath and believe in your heart that your cancer isn’t back and that you are okay. When I was diagnosed all of my genetic testing came back normal and I had no family history which meant I had no answers to why this was happening to me. So, now each day in the back of mind I worry about every little thing I do. What if this caused my cancer? What if that caused my cancer? What if something I am doing will cause my cancer to come back? When all of this started the physical changes were very challenging for me. Now, I sit here with my hair growing back, scars from skin biopsies, lymph node removal scars, no breasts with some really awful scars, skin burns from radiation, the inability to have a full range of motion in my left arm from the damage to my muscles from radiation, and to be completely honest, I feel more secure and beautiful in my own skin now than I ever had before. I am completely confident in the woman I am today. I am nothing but absolutely proud of what my body has overcome and accomplished. I have truly learned the true meaning of beauty and it’s completely opposite of anything I’ve ever known beauty to be. That doesn’t mean I don’t have weak moments where the changes to my body are very challenging to me, because I promise I do.  I have been hurt more by people this past year than ever in my life. I put my whole heart into every relationship in my life including friendships. This past year I’ve learned how few true friends I have, lost a friend that I believed with all my heart was true, and I’ve been very let down by family. I’ve also learned how valuable the true friendships I do have are, I’ve been overwhelmed with gratefulness and happiness at the family that I couldn’t have possibly made it without, found a true and honest beauty in myself, appreciate all of the little things in life, developed a strength and confidence I’ve never imagined, and I wouldn’t change any of it. Cancer is an absolutely terrible thing that I couldn’t list enough bad adjectives to accurately describe, but cancer is also a gift. I know, you think I’m crazy, and that okay. But cancer was a gift to me. I am truly thankful for so much that I have today that I have gained through my diagnosis. Cancer blessed my life.

Raw, Brave, Painful, Truth, Strength, Beauty

Raw, Brave, Painful, Truth, Strength, Beauty

My sister in law came over today and took some very raw and truth telling photos of where I am in my treatment. I want to share them with all of you, and the world. I’m going to take a few days to absorb the emotions and feelings that overcome me while I take these photos in. I’ll update my blog with my usual long ramblings then. Please know how much courage it took for me to be so vulnerable and honest to share with all of you what true pain and beauty¬†are behind my fight.

Getting my life back

Getting my life back

As you know, for some reason my right expander, which¬†was the non-radiated side ended up getting infected. I had surgery September 30th to have the expander removed, infection cleaned out, and a new expander replaced. October 5th I woke up with fluid leaking and obvious signs of infection. So, October 5th I had surgery to completely remove the right expander and allow healing for a few months before replacing another expander. The next few following weeks, my right expander began to be extremely painful and start showing signs of infection. I was going regularly to my surgeon to be followed and do everything we could to prevent infection and save the expander. There were several reasons we decided the expander reconstruction plan. First of all, I am a 29 year old young woman. I was very terrified as this was all happening so fast to have “nothing” on my chest but scars. I thought if I could have expanders I would at least to the outside world look like any other woman. Secondly, we were trying to avoid a huge 15hr reconstructive surgery. So, we gave it out best shot. I pushed through pain each day, the best I could, with a smile on my face for months. The few weeks following the removal of my right expander I could feel the infection developing in my left expander. Well, that’s not necessarily true. I could feel that something wasn’t right. My surgeon was doing anything and everything he could think of to save my left expander, and I will forever be thankful to him for that. One evening after leaving his office I cried the whole way home because I know what I had to do. I knew at that exact moment that I was done. Done being in so much pain I couldn’t live my life, missing playing with my boys, playing with my husband, chasing the boys, and the simplest of things like cooking dinner, sleeping, being able to sit up on my own. laundry, unloading the dishwasher, big hugs from tiny boys, etc. You get the point. The pain was running my life. I could barely breath without being in tears, much less yawn, or sneeze. So. that night I decided I would be calling my nurse and telling her I want the left expander out, I cannot possibly continue each day in so much pain, and I wanted my life back as much as possible. We scheduled to have the expander removed Tuesday October 25th. In the meantime, the pain kept increasing, and what appeared to be infection keep spreading. I sent pictures of the infection site to my surgeon and he admitted me to the hospital Monday to receive IV antibiotics all day/night leading up to surgery Tuesday. I was in so much pain they kept feeding me full of pain meds. I don’t handle pain meds well. At this time, I am in so much pain and I’m also very sick to my stomach. Much of the day including in pre up prior to going to surgery, and also following surgery, I threw up lots of bile. Which if you weren’t aware, you use a lot of chest muscles when you throw up. This does NOT feel good. I slept the entire night following surgery (minus being woke up for vitals constantly) which was a great sign. I haven’t had more than 2-3 hours of sleep for about 2 months from the pain. When I woke up this morning, I realized I felt better than I had in 10 months. I was so sick and in pain from both neo-adjuvant chemo, my bi lateral mastectomy, and radiation. Then, the extreme pain from the expanders. As of today, I feel ‘good’. I can answer when someone asks me how I am and answer “I feel good”! Now, of course my ‘good’ is much different from all of your feeling ‘good’, but I’m thankful for what I’ve got. When I had made the decision to have the left expander removed it was a very emotional decision. Even though I had pushed through so much pain and hell, I felt like this meant I was giving up. I also was very disappointed in myself for going back wards after pushing so hard to make the progress I had. Maybe the hardest part was being scared of having no breasts, but being covered in scars. It sounds so ridiculous I know. But being 29 years old I want breasts, I want to feel sexy. I’ve been learning just what ‘sexy’ really is, and I’ll tell you, breasts or scars women are sexy. I gave absolutely everything I had to the entire expander process. But I knew when I woke up in my hospital bed this morning, in the least amount of pain I’ve felt in 10 months that we more than made the right decision. I’m just as beautiful covered in scars, and I get to slowly get my life back!!! Next week I will go in and have my drain and stitches removed and continue to heal. We’re hopeful for smooth sailing from now on! I’m learning the embrace the new and true beauty that is now my body. Depending on how well I heal, we will have the big reconstructive surgery I tried to avoid in about 8-12 months. Although, my husband says I’m gorgeous and beautiful the way I am and that means the world to me. I’m still a 29 yr old young woman that wants breasts. So, when the time is right we will make it through the surgery just as we have everything else that has come our way. For now, I’m going to heal, embrace my beauty, enjoy regaining my life, completing the remainder of my treatment to ensure a long life of love with my incredible husband and boys, and enjoying our new home and slice of heaven.