Holy pain. I was completely un prepared for the amount of pain I am currently in. After we met with our Rad-Onc last week he communicated with our plastic surgeon that we needed to get as much fluid in my left breast as we could and not put anymore fluid in my right breast. The reason we need to expand the left breast as much as we can is because radiation is extremely hard on your skin. The less expansion we need to do post radiation the better. Currently I have 650 cc’s in my left breast, and 450cc’s in my right. As uncomfortable as it is going to be for me to have different size breasts, it is the only way to ensure the correct angles for my Rad Onc to radiate my left breast and arm pit. Guess I may be learning the ol’ art of bra stuffing! Side note, check out how well my incisions are healing! I am healing well, and the scars are becoming less noticeable! We are scheduled to see our rad onc next Thursday and will have my CT and mapping done at that time. They will tattoo dots on my chest to mark where I will have my radiation each time. We will then go in for radiation everyday, 5 days a week for 5 weeks. The radiation itself should only take about 8 mins. I am hoping to be able to schedule my appointments over my lunch hours everyday. The drive to Sky Ridge, parking, walking in, and checking in should be the majority of the time involved. During this time, we will need to be sure to take the best care of my skin to prevent as much breaking down or burning as possible. I have heard many women’s experiences with radiation vary just as any step in this process. We are all so unique, you cannot assume your personal experience will be like anyone else’s in particular. I have consistently heard the fatigue is pretty rough. Stay tuned for updates on how radiation seems to be for me. Immediately following completion of radiation we will be back in with my plastic surgeon for him to see the damage the radiation has done to my left breast, expand my right breast, and complete the remaining 150cc’s of expansion in my left breast. The remaining fluid going into my left breast will be at a much slower rate as my skin will be damaged and fragile. I will keep my expanders in for a full year following the completion of my radiation before having reconstructive surgery and having my implants placed. Waiting a year allows my skin to heal to the best of its ability before reconstruction. I will say to you, the last expansion went so smooth, which if you think about it makes sense. My expanders, muscles, and skin had a lot of room. This time, we added 200cc’s to what was already feeling tight. The reason we added so much is I am going through a very accelerated expansion to ensure we have as much expansion on my radiated side before we start, and my rad onc needs to be start as soon as possible. The bottom line is, the radiation will always take priority to my reconstruction. We would have preferred to expand slower, and completely prior, but the urgency and important of starting radiation wins. The pain, is something I was completely not prepared for. I can barely take a breath, much less move much without crying. So. It’s time to take some medicine and let my 3 boys take care of me!
Month: June 2016
The phone call I received December 16th, 2015 completely turned my life upside down. A lot of scary, and painful, but along with that a whole lot of good. Weighing heavy on my heart recently has been the complete change in my view of life. Whether big or small, I see all things in a different light. All of the things that seemed so big have very quickly become small, and all of the things that took a ‘back seat’ have moved up front in a hurry. Before my diagnoses I took a lot for granted. This simplest of things. I hated my hair and how long it took to dry in the morning, or the fact that I could never get my hair to look perfect like in the magazine. Now, I am so stinking excited for the duck fuzz I’m growing! I won’t lie and say that I am completely comfortable in the skin I’m in, but I’m getting closer each day. Sunday, we road the Harley and I let my hair flow in the wind wild and free. I had a lot of emotions around that. I was completely comfortable sitting across from my husband lost in conversation unaware of my very short hair until I would catch a stare. In that moment I would feel so small, and scared. I felt like I was completely out of place and should be at home where I am safe. When I would make eye contact I would think I wonder if they knew that I had cancer and everything I went through, they would look at me a little kinder, and maybe even shoot me a smile instead of looking at me like I had 12 heads. It made me realize a few things. One sure thing I want to confidently gain by the end of all of this is complete confidence in my overall being. I know, I know, in all honesty what woman does? Whether a size 22, or a size 0 every single one of us has insecurities and fears in our bodies. I’ve gained 20 pounds from chemo, lost my hair, lost my breasts, and have gained plenty of battle wounds. Each day, gaining more confidence, but still have miles to go. I’ve mentioned before the desire to “just be” like my boys. No inhibitions, no fears, no worries in the world about what anyone thinks of their choice in cowboy boots, shorts, and a mismatched shirt, or their little pot bellies. You would think with the fight I’ve been fighting I would be there, but I’m not quiet. Yet. I am much more aware of how I treat other people, and make others feel. I make sure in my daily life, to shut down any judgement that begins to cross my mind. We all do it, intentional or not. We may look at someone a little sideways and wonder to ourselves why they chose their hairstyle, their clothes, or did their makeup a certain way. But for me, while people sit across the restaurant and look me up and down and can so easily rip down my walls, I’ve found myself smiling at others more, and loving with an open heart. We are all so different and that is what is great.Beauty is not the same for everyone, but beauty is as diverse as each snowflake that falls from the sky. I love watching the snow fall and unless you catch a handful and look at each individual flake, they all look the same and light up the sky with the same beauty. I’ve also changed my perspective on what is important in life. In my realization of how fragile life is, how quickly it can be taken away, I’ve learned to pick my battles and look at the bigger picture. I’ve become much better focusing on what really matters. My prognosis is good, but I find myself making decisions and choices as if I could be gone next week. What are the things that will matter? What are the memories I want to leave the boys and my husband with? It’s not being stressed about making people happy that will never be, or worrying about things I cannot control. I have learned the hard way lately how terrible people truly can be. I’ve cried a lot of tears and felt a lot of heartbreak. Wondering why people treat others so awful, why people hurt others on purpose? But, I’m all done worrying about others. I have realized there is nothing I control about how others act and the decisions they make. I can only hope to be a shining light and influence others when I can. “Someday everything will make perfect sense. So for now, laugh at the confusion, smile through the tears, and keep reminding yourself that everything happens for a reason.” My reasons for my diagnosis become more and more clear each day. I have goals a mile long, and I cannot wait to meet them all. I will be completely confident in my own skin ( + or – 20 pounds, hair or not, breasts or not, scars, rashes, blemishes or not), my heart and soul still shine the same no matter the appearance of my outsides, I will choose my battles, let go of what is not important, love freely, hold my head high, make memories for a lifetime, speak with gentle and kind words, forgive, and live each day not looking back.
We went to church yesterday morning, and as I sat there my ankles and feet were numb and I was having shooting pain at the same time. I looked at them and they were a little swollen, but nothing major. After church we drove up north to set up a surprise party for my grandpa’s birthday! As the day went on, my ankles got bigger, I developed a head ache, had shortness of breath, and just overall began not feeling well. I called my doctors office and was told to go to the emergency room. Apparently the E.R. is the happening place to be on a Sunday afternoon. The waiting room was packed! My sister and I sat in the waiting room for about a hour and a half before being seen. They took us back in the freezing room and covered me up in those nice warm blankets. The nurse tried several times to access my port, I even did the normal gymnastics we have to do when its clogged. I lifted my right arm up, turned my head to the left and coughed, no luck. She pushed a lot of saline, and still no luck in accessing it. She then moved on to my arm, which was not much easier either. After some time she was able to find a vein and start an IV. The doctor came in and said he was concerned with my symptoms of blood clots. So, our plan was to run D-Dimer blood work and if that was abnormal we would then have chest X-Ray, Leg ultrasound, and Chest CT. From what he explained, the D-Dimer blood work being abnormal indicated a clot issue. First on the list was an EKG and that was normal. Next was a leg ultrasound. The ultrasound tech was so kind and sweet. She scanned from my groin to my ankles on both legs. Results were normal. Next was chest X-Ray which was pretty easy except the last image I had to stand turned to the side and grab a bar that was a little difficult as I am still recovering my range of motion after my surgery. Last test was the chest CT with contrast. He waited for this test because he did not want to expose me to even more radiation if it was not warranted. At this time with my blood results, symptoms, and the normal tests we had already done, he felt it was time for me to have the CT. He said he was looking for clots, fluid, or the possibility of another mass which may be another cancer. When he said that to me, I immediately got sick to my stomach with nerves. As they wheeled me back for my CT the patient before me was being wheeled out of the room. He was being escorted by security. Drunk from a fun weekend and covered in blood. For a brief moment I wished I was there because I had been having so much fun, had been drinking, and ended up making a bad decision. I’ve felt so frustrated for the past 7 months because I have had so little control over anything. It was my turn for CT. I slowly climbed onto the bed and laid back. They had me lift my arms above my head which was one of the most painful things I have felt yet. I am still very much healing from my surgery, and I have not been close to lifting my arms above my head. I breathed through the pain, and began to shake. Once the scan was complete and I was back in my room I was almost in tears from the pain, so my nurse gave me some medicine to help. I was then able to close my eyes a little and rest while my mom sat by myside. These things, well all things that ever go wrong seem to always happen when my husband is at work. Blizzards, hail storms, sick kids, injured dogs, or issues with me usually happen on days when he is not home. I had talked to him several times throughout the day and always ended our call in tears. Tears because I miss him so much, he’s my strength and support, I would give anything to have him by my side, and tears because I felt s terrible that this was going on and he couldn’t be with me. I know he was worrying and I hate to make him worry when he’s at work and there is nothing he can do for me. The doctor finally came in with good news and bad news. Good news was that the CT was normal, bad news is that he did not have answers for my symptoms. He said it was important that I had come in, and that we need to follow up with my doctors the next day. My dad, step mom, and grandparents came at this time too. It’s a great feeling to know how loved and supported you are. Of course, my grandma had to give me some hell about slowing down, and letting my body heal. She is right and I know that, but I’m most certainly not good at resting or slowing down. It has been my top priority since diagnosis to continue my normal life to the best of my ability. I am a big believer in mind of matter, and that attitude can make all of the difference in the world. I have, to a fault kept my life as normal as possible. I do need to allow myself to rest more. I’m not super woman and sometimes pushing myself only hurts me and sets me back. It will be one of the harder things for me to do in this whole process. Kind of funny if you think about all of the painful and hard things I have done and still have ahead of me. Yet, resting and slowing down are the hardest for me. We finally got home and I threw up and then feel asleep on the couch. I think I threw up from the pain medicine they gave me. I do not do well with those medications. My sweet boys took such good care of me as I laid on the couch. I laid on Tate’s lap, as he kept kissing my head, and tickling my hair, and Lane kept rubbing my cheeks and covering me in kisses. They have such genuine hearts and love me with such passion. I’ve said a million times, but I’ll say it a million more. We can all learn so much from our children. I wish I could be so free, innocent, loving, have no inhibition, and just be happy. To be able to wake up and wear a pair of shorts with a shirt that doesn’t match, and cowboy boots on a 95 degree day with such confidence. My goal is to become more like my boys. They inspire me each day. We will be following up with my doctors to find answers this week. Do me a favor and watch a child whether it is yours or not, and try to become more like them. Open your hearts, lose your inhibitions, wear what makes you happy, be confident in everything you are, and just be genuinely to your bones happy.
Web MD, Google, and YouTube are all terrible sources to use when you are looking for medical information. I made the mistake of looking up videos on YouTube of what to expect today for my first expansion. Needless to say, I came across some videos and information that freaked me out. I woke up with almost certainty that I was going to throw up from my nerves. You’ll be happy to know that I didn’t throw up. Mostly because I already had my “war paint” on and I didn’t want to mess up my make up, because it’s still my security blanket. Something in this mess I can control. Which reminds me I need to buy another eye brow pencil before I have to go out in the world with no eye brows! There are days you would be pretty entertained watching me draw those babies on. I should figure out a way to share some “bloopers” with you just to make your day. Back on topic, we get to my appointment, the M.A. takes my vitals, then has me sit in the procedure chair for a while to let my heart rate calm down. Apparantly once again even though I had my smile and brave face on my heart rate doesn’t lie or hide my fear. My plastics doc comes in and makes sure everything is healing fine, and then we begin. They take a device that has a magnet in it and slide it over my breast to find the port. Once it’s found the doctor presses down to make in indentation on my skin to know where to place the needle. The needle going in is a weird sensation. I’m still numb, and will stay that way, so that is a blessing in this situation. The muscle “twinges” it what is painful. The needle has to go through the chest muscle and then into the expander. Once the needle is in, I only felt pressure increasing. At the time of surgery, he had put 250cc’s of saline in my expanders, and today we were able to put another 200cc’s in each, total of 450cc’s in each breast. We still have 350cc’s to go prior to the start of radiation. I am currently scheduled to go back 13 days from now for another 200cc’s. My plastics doc is going to be talking to my rad onc to see if we can push radiation out 2 weeks to that we can get the remaining 150cc’s in. It’s best to have the full amount of saline in before radiation to ensure the best results and give my skin the best chance of healing. Next steps right now are healing from expansion until the next plastics appointment, and we also meet with our Rad Onc Monday to make our plan and do my mapping. I’ll end with telling you that the expansion was no where near what I thought it was going to be. My husband pep talked me the whole way and reminded me how many hard and painful things I’ve “made it through and made it look easy”. Happy to tell you that this actually was easier than a lot of the things I have had to do the past 6 months. Plus, I’m starting to have a little something something under my dress now! Soon I’ll be able to wear my strapless dresses without worrying about them falling down!!
First of all, for any of my friends who are reading ‘Me Before You’ and have not finished, stop reading this blog post. Fair warning to avoid spoiling the ending for you! Yesterday, my husband came home from work, and I was able to be up, showered, medicated, and ready for our day together. For the first time since surgery, the pain was not taking my breath away, or making it very difficult to move. You know what that meant?! Date!!! We ran a bunch of errands we were needing to run I know, what kind of ‘date’ is that? Well, for me, for us, any time we have time together no matter what we are doing it’s so much fun. I’m even dorky enough to sing a lame song that goes a little something like ‘ running errands with my baaaayyyyybbbbbbyyyyyyy’. Why? Because it really is all of the little things in life. Since being diagnosed that is what my life has quickly become about. All of the little things. We stopped and ate lunch together before heading home, and by the time we got home, I was in a lot of pain from just simply running errands. I took some medication and laid on the couch for a 2 hour nap. Upon waking up I was SO excited for the date night we had planned together. Dinner and a movie. So simple, but I was nervous. Nervous that I wouldn’t make it through the night, that I would ruin our night together if I was unable to make it all the way through without having to go home and lay down and take more medication. But, guess what?! I did it! Made it through our date night!! Painful, and hard, but the best night with my husband and best friend. After our sushi dinner, we went to see “Me Before You’. I had just finished the book, and my husband promised to take me to the movie even though ‘chick flicks’ are very much not his thing. For those of you who don’t read, and haven’t seen the movie, the character in the movie was paralyzed in an accident, and it is a story of how his life has changed since. A specific line in the movie hit my heart and soul hard, and ended up created a long night of openness, and tears between my husband and I. The main character said “I loved my life, I really loved my life before this. This is not the life I want to live”. In the end of the story, he ends up opting to end his life as to him, the life he now had was not anything he had ever wanted. It was hard, and painful, and not anything he wanted. I wiped my tears and we began our walk to the car. It was cold and windy, and I had a dress on, which by the way, was so hard and painful to get on. I wanted to wear a dress, and get dressed up for date night with my husband. This was a pretty painful experience. Trying to pull on a dress over my healing mastectomy site brought tears to my eyes. But, I got into it! I was also able to cover my dead nails with nail polish and feel a little prettier. (Chemo has killed my nails, and they are not the ‘pretty’ nails I took for granted prior to all of this. I attached a picture to this to see what my dead nails look like ) Back to the point, walking back to the car in the cold, I was shivering which was VERY painful. It makes sense. When you shiver, your muscles contract and oh my goodness did that kill me. By the time we got to the car, I was able to warm up and catch my breath as the pain started to subside. I was looking out the window when I began to fall apart. I started crying thinking about the book/movie and how the character felt. Although very different circumstances, I have felt sad and angry as he did. Each day I wake up with a full heart, and I am grateful for the day. As you have all heard me say a thousand times, I know this is my plan, my journey, and all of the wonderful things that come out of it. I believe in mind over matter, and being grateful for each little blessing. But, it is just as important to feel everything that you are feeling. To melt down and cry, be sad, and angry. The movie, and the pain I was feeling from a simple date night brought on a whirlwind of emotions and opened the door for many tears, honesty, vulnerability, and deep conversation with my husband. The perfect ending to our date night. I tried to put so many feelings into coherent words to help him understand what I feel but don’t really talk about. Why when I finally find true love, my very best friend, my soul mate, my puzzle piece does this happen to me? I am in so much physical, emotional, and mental pain. It’s not easy. None of it. I am healing each day, and so thankful. I’ve attached pictures below of post op day 1, and 2 weeks post op. I’m healing! I got clearance to start expanding next Friday, and I will continue to keep everyone updated with the progress. I think it’s important to share photos of this process, as there are many people who genuinely have no idea what this entails. I received text messages the day of surgery from friends congratulating me on my “new perky boobs”, and telling me ‘at least you wont have to wear a bra anymore’. I cried because that is absolutely not what this is all about. It takes a long painful road to get to that point. I knew then, that I needed to be brave and vulnerable and share photos of this process. I get stronger each day with my confidence in my new body, but last night when I fell apart in my husbands arms I cried. I cried and grieved losing my body. Losing my breasts. Losing my 29 year old body. It hurts, it’s not easy, and it’s not fair. We go places, and people stare at my port, or other women look me up and down and make me feel small. If only they knew the fight I was going through to just be here. I wish peoples hearts would be more true, open, accepting, and loving. We’ve all heard a million people talk about not judging another person until you’ve walked in their shoes, and this is the perfect example. For any stranger who does not know me, they don’t know my pain or what my day to day life is like. How could they? I have my make up, eye brows drawn on, my wig, and my clothes covering my scars. I can blend into the crowd with everyone else. I find myself observing people in a different way. I can’t help but look at people and wonder what their story is. What struggles they’ve had, what hardships they’ve overcome. I’ve become a much kinder, genuine, accepting woman already through this. I continued to cry and tell my husband that I would give anything to have the “problems” other people have. To have “normal” 29 year old woman problems. Anything. The truth is, as I told my husband last night, I am happy, and blesses, and thankful but I am heart broken and in so much pain everyday. It’s the hardest thing to explain, and I think I did the best I could through the gallons of tears I cried last night to help my husband understand how you can feel so blessed and thankful, but be in such an incredible amount of pain at the same time. It felt good to feel last night. To allow my husband vulnerably into my soul. We have a busy week ahead, I have a Muga scan tomorrow, chemo again Tuesday, and we start expansion Friday. Excited to keep moving forward and crossing things off of our list.
May 18, 2016 forever changed
May 18th, 2016. One of the very hardest days I’ve conquered so far. The night before surgery, I was emotionally exhausted but un able to sleep. The nerves and fear I carried in my heart overpowered my exhaustion. I broke down and ended up taking something to help me sleep, then fell into my husbands arms, the most comfortable, loving, and safe place I’ve ever known. I slept for what felt like 5 minutes then the alarm went off for me to shower and prepare to head to the hospital. I lay there for a few minutes tight in my husbands arms, silent tears running down my cheeks and onto his arms. I wiped my eyes with shaking hands, took a deep breath and then began to check items off of my to do list prior to leaving. It was somewhat helpful to have so many things to do, to keep my mind and heart occupied with the tasks at hand and not let my mind wander. Dropping the boys off was an emotional experience I somewhat touched on in my last post, but it was one of the bigger moments of that day for us. The minute the boys woke, they knew it was momma’s big surgery day. I was greeted with such sweet words that came from each of them. “Morning my sweet sweet momma. You look beautiful!” was my greeting from Tate. “Morning momma, I dreamed about you last night. Today its big surgery day and the cancer we hate will be all gone. I know it’s going to hurt, but you are so tough.” my morning inspiration from Lane. We pull up to my person’s house and we all slowly and quietly walk in trying not to wake the whole house. When the time comes for me to hold my boys and kiss them ‘see you later’ I cannot possibly hold back my emotion. Something so strong pulled from my heart, and my insides. I squeezed them a little harder, and kissed them a little longer than usual. You don’t try to, but your mind seems to go to those ‘what if’ places. I wanted extra long kisses even if that meant letting my tears fall off my face onto theirs. After laying my head on my persons shoulder, wrapping our arms around each other, then making brief eye contact we left. In the seconds I had eye contact with my person so many things were silently said. I love you, everything will be okay, I believe in you, thank you, I’m terrified, stay strong, thank you for caring for my boys while I’m at the hospital, thank you for being my best friend, and I’ll see you soon. So many things from a quick glance. My husband and I make our drive to the hospital, which consisted of him holding my hand tight, and uplifting powerful, loving, encouragement from my husband which continued all the way up until I cannot remember anything else from that day. After checking in we waited until it was time for me to go back. In that time, my grandparents arrived armed with hugs, kisses, and smiles, my momma prayed with me, and I found my courage and bravery while looking into my husbands eyes. Right before I left, I gave my wedding ring to my husband to hold and take care of while I was in surgery. This was an emotional moment for me. I don’t ever take my ring off, my reminder of the incredible vows my husband and I have promised each other for life. To take my ring off, and give to him for safe keeping was hard. After kissing him one more time, I walked down the hall and everything started moving really fast. Urine samples, IV’s being started, attempting to put on a paper surgical gown, pulling on sexy neon yellow surgical socks, arm bands, and finally a shot in my arm that burned like a giant bee sting. Then finally after what seemed like an eternity my husband came back with me. I mentioned this previously, but he just brings such strength, bravery, confidence, and calm to me. After a few moments it was a very fast moving in and out of the anesthesiologist, general surgeon, plastic surgeon, several nurses, and all of my family. My general surgeon, who is an absolutely phenominal woman came in to discuss everything, and also let us know that the MRI I had 2 days prior showed that after chemo the size of my tumor in my breast was smaller than a pea!!! What amazing news! All of the hell we went through with chemo was worth it!! My plastic surgeon discussed our plan, then asked me to stand up and take off my gown so that he could draw on my chest what he needed. Just another uncomfortable moment in this journey. Yes he’s a doctor, yes the nurse is a professional as well, but it just is not comfortable standing there naked and vulnerable in your new body. The new body you have developed from your journey so far. The scars, the weight gain, your scars from the chemo toxicity on your arms, and your bald head. You take a deep breath, put a smile on your face, drop your gown, and confidently make eye contact. After he drew what he needed and I re dressed it was time for my “good byes”. All the way to this point I was very silently hurting with a fast beating heart, sweaty palms, wandering mind, and a sick stomach. Now, I begin to cry. For so many reasons. Fear, nerves, excitement, grief, anxiety, anger, sadness, and joy. When we got to the operating room, my amazing, and I mean amazing team awaited me. As I cried, they soothed me with words of kindness, gentle touch, and my general surgeon held my hand, wiped my tear from my cheek as tears fell down her cheek and across her smile. My next memory is briefly being awake enough in recovery to see my husbands smile, and hear his voice. I made it through the surgery, I did it, and now it’s onto forever in his arms, making memories with our family for the rest of what will be a long life. The absolutely stunning, beautiful, beyond talented Maribeth accompanied me and my family on this pivotal day to once again document for us with photos. These photo’s pull at my heart and bring many tears to my eyes and I am forever grateful to her for being able to document this for me and my family.