Its swimsuit season. As if the previous sentence didn't invoke enough internal chaos on it's own, I have one minor added obstacle. Er, rather two minor obstacles....No freaking boobs.
In my own pool, I throw caution to the wind and hop in topless (slathered in copious amounts of sunscreen, of course). But this last weekend when my family found itself on a little stay-cation at a water park/resort, I found myself stumped on what to wear to a public pool. Its not like I can just wear a top and appear completely flat chested because I have folds and piles of skin and tissue(being saved for reconstruction) lumped all over the place. I put my daughter in a full sleeved swimming suit that practically covers her entire body, sun safety trumps cute bikinis everyday in my book. God I sound old. So I figured maybe I would get one of those long sleeved shirts and swim in that? It would hide the disaster that is my chest and besides its practically cancer proof! I certainly am not going to drop hundreds of dollars on a prosthetic swim suit. Then I thought, screw it! I am going topless to the water park. I don't even have nipples for heavens sake! I dare somebody to say something. I actually started feeling compelled to go topless, like I needed to prove something. What? Well, I'm not completely sure.
The Susan M Turley Foundation had gifted us with this weekend resort stay. Susan was a stunning 25 year old that died of colon cancer. Her family and their foundation gifts young cancer fighters with a weekend away. The resort that we stayed at had a water park attached and at night they had a movie in the pool. While Adam watched the kids, I wandered over to the empty hot tub for some quiet time. As I soaked in the over chlorinated bubbles, my mind kept wandering back to Susan. What she wouldn't give to be at a resort with her family, boobs or no boobs. Suddenly all the anger I had been feeling as I watched women prance around in their cute bikinis seemed insignificant. Whatever point I felt needed proving by marching my bare scarred chest around in public now seemed somewhat self indulgent. And in that moment, I thanked Susan. For giving me this weekend with my family, for showing me how insanely lucky I am in every moment simply to be alive. Susan and I had a moment that night in the hot tub and I was left with a higher understanding of what matters. And it certainly isn't swimsuits or boobs, or lack their of. She granted me the confidence to wear whatever the hell I wanted that weekend and walk with my head held high. Thank you, Susan.
Susan M Turley
Zoie and I in our matching cancer-proof suits.
My chicken loves hotels!
Best brother/sister duo ever!
Side note: I have been feverishly writing a book which is the reason I haven't posted as much recently. I was asked to tell a candid version of what its like to be young and living with cancer. There was so much unbelievable crazy that went on this past year that I wasn't comfortable blogging about. It's juicy! Can't wait to share it with you! Coming 2015!
For more then a decade I have been behind the styling chair. A large majority of you have been with me for most if not all of that time. You let me play, experiment, mess up and beautify those pretty little heads with complete faith. Fear at times, but faith none the less! Along the way, you trusted me with so much more then your hair. You gave me your secrets, and I let you hold mine. We've shared laughter and tears, weddings and divorces, affairs and scandals, asshole husbands and nagging wives, lost jobs, graduation and new beginnings, foreclosures and first homes, infertility, miscarriages, and beautiful miracle babies. You let me into your world and became such a part of mine. You've talked me off the ledge, called me out on my bullshit, and celebrated my accomplishments. So, to my dear sweet clients, you are so much more then just a job, you are my friends. And I miss you terribly.
When I was first diagnosed I told my doctor that I wasn't going to quit working. No matter how sick I got I was going to push through. I worked hard to be where I am, to build my business and I am not letting cancer or anything else take that away from me. My doctor smiled sweetly and told me that she was going to root for me, that she hoped I could make it happen but that most people are unable to work through the treatment I was about to begin. Those people were old though, and so what if I had to take the occasional break? I was so unprepared for how difficult it would be. Naive to just how sick I was about to become. I remember the fateful morning I tried to get out of bed and couldn't. I sprawled out on the living room floor, every muscle in my body was on fire and I could barely hold my head up. I was so angry that the chemo won. I wanted to give it the finger and prove that I was different. I didn't want to let my clients down. I didn't want to lose it all. Everything was crumbling, like sand sifting through my fingers. That morning, I canceled all my appointments indefinitely and went back to bed for a week. I knew it was the end of my business. I knew that cancer was going to take this away from me too. And I was nothing short of furious.
So, I know what all of you are wondering. What so many of you have been asking. The BIG question. Am I coming back to the salon? The honest answer? I don't know. Right now I don't have the stamina to make it through one color let alone a full day of them. But that could and is improving with time. The true demon of it all is neuropathy. The drug Taxol wreaked havoc on my nerves, causing perminent damage all throughout my body. Most disturbingly, my hands. I am left with little to no grip left in both my hands. The weakness and pain comes and goes and there are treatments available that I am considering and looking into. My radical double mastectomy took muscle mass and tissue needed to raise my arms and also left me at high risk for developing lymphedema. 6 weeks later I am still suffering the effects of radiation and recently began an oral drug that I will take everyday for the next 5 years. Its all something that I am trying to work through and figure out. I don't know what my body will be like in a month, in 3 months when chemo is over, or in a year. I still have reconstruction to tackle and a lot of emotional wreckage to clean up. But everyday I get stronger, better.
So that is the short answer. The good news is, I haven't lost my clients. You have been here the whole time rooting me on every step of the way. Through emails, lunches, facebook messages, texts, and visits, you have made me feel so validated. It's not the job that I miss, it's the people. This girl got to hang out all day, gossip, play beauty shop, and I got paid for it! That is one sweet gig. And to be honest, I need to work. So to those of you crazy girls out there on a "Hair Strike", get a hair cut! I might be awhile....
I need to take a moment and publicly acknowledge the true hero who made it possible for me to go get well- my business partner, Haley. Haley you are almost as beautiful on the outside as you are on the inside. Without batting an eye you stepped up and covered me completely. You held it all down and allowed me to just get better. What an amazing friend and person. I am so thankful to you Haley, for everything you did to help me get by. I will forever be in awe of the sacrifices you made and the grace in which you did so. You saved me! And Jen and the entire crew at Signature, thank you for everything. Without you I couldn't have gotten better, you gave me piece of mind at a time when it was scarse. Your support was so far beyond what was ever expected and I am forever grateful!
Haley and Jen dropping of a wad of cash raised by our clients and coworkers. Angels in my path!
"I'm a grenade. One day I'll explode, ablitherating everything in my wake"-The Fault in Our Stars
I wonder if that's how she feels. I wonder if she feels cheated. Like she drew the short straw. It's not supposed to happen like this. It isn't fair to her. My mom. I remember sitting with my mom at chemo one day and seeing a cute mother-daughter duo out on the patio. Like us they had on cute outfits and wore lipstick, similiar ages, and like us they were laughing and making the best out of an afternoon of chemotherapy. There was just one hudgely suttle difference... The IV stand was on the other side, dangling from the arm of the mother. I whispered just then "It's on the wrong side". I don't think I even intended for it to come out loud, but it was the first time that it dawned on me. The gravity of what my mom must be going through. I was far too caught up in the caos of my own mind to even begin to empithise what this must feel like for her. Her baby had cancer. Through tear soaked eyes she squeezed my arm and said it back to me "Kara, it's on the wrong side."
I honestly think it's worse. To be the mom. I think about my babies and I can't even fathom one of them being that sick. What I wouldn't do to take it away from them. I know she feel helpless, I know she is scared, and I hope that knows how glad I am that it drips from my arm instead of hers. From the begining she has had this ability to just let me be. Whever channel I'm on in that moment is exactly what she tunes to, the level of selflessness that must have taken is unbeleivable. She has put off her job, her friends, her finances, her other children, and her entire life in an instant and wouldnt dare let me appologize for it. She hasn't left my side, even when my anger often got the best of me. She is my greatest confindant and my biggest chearleader. I know that no matter what, I have one person in my corner who wont leave me. I have my mom.
Happy Mother's Day, Mom. I know I haven't said it enough, Thank you! For refusing to ever say that I had cancer. For keeping joy in my house when I was so sick. For bringing laughter. For loving my husband and being a mom to him, too. Thank you for letting me navagte through this my way, on my terms. For adjusting accordingly even when it surely wasn't easy. For the sleepless nights and the early mornings. For shaving your head. For the 3am emergancy visits and the countless loads of laundry. For the entire year of round the clock childcare. We seriously couldn't have done it without you. Thank you and I love you. See you Sunday!
I know that it has been a while since I have blogged. I am flattered by all the messages I have recieved telling me that you missed my weekly updates. I am still baffeled that a single person reads these things let alone thousands. It has made me feel mighty when my body was so weak. My army. I needed a break. Some time to be alone with my thoughts and away from them too. This week will make up for it. I want to take a moment each night and reacap our day, mostly for my memories but I also know that those of you who helped us get here are just as excited (if not more!) so feel free to follow us on our "We kicked Cancers Ass, Dream Vacation"
Saturday morning before we left I attempted to have a yard sale. Cause' ya know, Im nuts. We wound up getting rained out pretty early on but not before I was able to pocket a couple hundred bucks. We were able to borrow grandmas minivan which made for a very cozy ride. Ive always sworn that I'd never own a minivan but after some time in this bad boy, I gotta say...I'm kinda digging it! When we got in the car I began my speach. Through some tears, I told each one of my babies how thankful I was for taking such good care of me this year, for being patient, for being brave, and for being my reason to fight. We talked about how different our life is going to be and that this moment was the first step to a life lived fully.
I spent the last couple weeks making road sign bingo, pipe cleaner creation contest, car scavenger hunts, licence plate map contests, ect! I was fully prepared to make our ride loads of fun. After 7 hours, one stop at Denny's, and a couple "are we there yets?" We made it to our hotel in Carlsbad, Ca. We decided to go watch the sunset at the ocean and that is where I let myself just cry. Reflecting on my year, but mostly just how overwhelmed with gratitude I am. For a while we were all just quiet and still. It was a beautiful moment. Then we grabbed some Chinese take-out and ate noodles in bed.
We woke up vibrating with aticipation about our first day of actual vacation. We got to Legoland early and took full advantage of our time. Riding most of the rides, eating lots of churros, and building until our hearts content. It was a great day!! We stayed until closing and then headed to our room at the Paradise Pier in Dinseyland. When we got here we were surprised to see a big banner on our door. Our room was filled with so many goodies! Huge stuffed Mickey, MIni, and all their friends. Candeis, toys, balloons, sweet notes, galore! My mom had our room filled to the max with the most thoughtful of gifts. Surprises at every corner. So beautiful and specail. I had another good cry, I think I'll be having lots of those here. After all, its been a long time coming.
Good night! We have a massive Lego to build and a big day at Disney tomorrow!
It finally feels like it's supposed to. Like I am releasing the pause button and starting where I left off a year ago. I am living. Really, living. Exceptionally, authentically, and so much more aware. I am in every moment. Present. I owe that to cancer.
After spending a year in bed, I was over the moon to feel well enough to throw my daughter a birthday party. I did have to push it back a couple weeks to revolve around my chemo and allow my body to heal a little more from radiation. But that didn't stop my hot glue gun and I from going all sorts of "Peppa Pig" crazy, spending weeks of late nights hand making all of the decorations. I loved every second of planning it, completely reveled in it. I have missed being a mom more then any other thing. I don't know how many more birthdays I get to spend with my children, I guess none of us do. I know that I have this one and that alone is cause for celebration. For the first time, I got to entertain in our "new" home. I wasn't in pain, I wasn't sick, and I wasn't faking my way through it. Just transparently happy.
I will be finished with my year of chemo in June. Lately, every moment that I am not chemo-ed out, I am bat shit crazy with energy. I want to do everything that I missed out on all year, I don't want to waste a second. In a few weeks we will leave for our big celebratory Disney vacation. I'm thinking about having T-shirts made for all of us that say "Our family kicked cancer's ass." Because we did, as a family. We are standing on the other side of this, united and stronger then ever. What an amazing opportunity for our family to reconnect, to tie a big fat Minni Mouse bow at the end of this illness and show my kids that we're okay. Healthier, happier, and on the right frequency we are ready restart our life. As I am ending my journey through cancer, another member of my family is beginning theirs. And although it is their story to tell, it is a reminder to spend every second alive. Don't waste your time, surround yourself with those that lift you higher and love those who'll let you fiercely. On that note, Happy Birthday my sweet Zoie girl, you are pure sunshine.
One of the first things I ever blogged about was the frustration I had over the words "Survivor","Fighter","Warrior". I was angry with those words, disconnected from them. Why did some women feel so powerful while I felt like a thousand tiny shattered pieces? My fear was too consuming to feel anything but petrified. And frankly, I found some of the "girl power" paraphernalia a bit cheesy. I just didn't get it.
Today, it is with great respect and understanding that I now call myself a Survivor. Fighter. Warrior. After all, that is exactly what this is. A battle. This is war. A fight for life, for love, for everything. It took an army of soldiers to get me here. Friends, family, and complete strangers that fought beside me and at times for me. In war there are casualties, losses, deaths. I caused damage and hurt so deep that I lost people I never thought possible to lose. I lost parts of me that I miss so completely. Beyond the chemo and surgeries that lay ahead, there is still a war left to fight inside of me. I fight the demons inside my head every hour, sometimes every minute. And as much as I hate to admit it, it's often every second. It never goes away, it just gets more familiar. Eventually you get used filtering every thought through a cranial cancer colander.
On Friday, March 21st at 10am, I completed my 30th daily radiation treatment and got to ring my bell. A woman named Louie was there with me everyday, taking care of me, and getting me through one of the scariest times of my life. Thank you Louie. My husband, kids, mom, and brother were there to watch me ring my victory bell. It felt good.
The burns from radiation continue to develop and worsen for a few weeks after treatment. The picture below is of my chest today. The folds by my armpits are called "dog ears" which are basically just piles of tissue being saved for reconstruction. The burns are through and through, meaning I have burns through my body and onto my back. I am in lots of pain and weird smelling fluid leaks from the treated areas. My skin will be thicker and more leathery forever in those spots. At this point my body feels so deformed, foreign. I've lost my sexy. But, I am alive and all of that stuff really doesn't bother me all that much anymore. Besides, being cute is totally overrated.
To those of you that lifted me up, let me fall, and carried me through these last few weeks, I need to say thank you. For the childcare, the naps, the house cleaners, the prayers, and every word of encouragement. Thank you for letting it be ugly, me be ugly, and for loving me anyways.
Five weeks into my daily treatments and my skin is red, raw, and blistered. This morning, the thought of getting to my 24th radiation treatment seemed all too impossible. My inner dialogue was whispering "Just sit up, now breathe, just put your feet on the floor, now breathe..." Sometimes taking it one day at a time is just too daunting. Sometimes it requires seconds, nanoseconds of pure fight. There is a term among marathon runners called "The Wall", it refers to the moment where your body gives in and simply refuses to take another step. I've hit The Wall. As my fingers flick these keys, tears of defeat roll down my cheeks. Requiring a deeper layer of surrender. Its beyond strength, all of that has long been mustered. I've simply surrendered. Knowing the only way to break through The Wall is to put one foot in front of the other. Radiation has robbed me of all my energy, stolen my patience, and fractured my faith. So, sweet friends when you hear from me next it will be to the tune of my victory bell. Friday the 21st will be my last radiation treatment. With only a hand full of chemo's left to complete I can see the finish line. But first, I just have to tear down this wall.
If there is one thing worth fighting for.....it's this.
Today is my birthday. I'm 30. Last year when I turned 29 I was instantly filled with anxiety over being 30. 30 simply sounded so much older! I felt I should be more accomplished by age 30, have more money, or drive a better car. I certainly didn't want to look old. I wanted to forever be young, vital, and beautiful. Oh, the irony and wit that the universe beholds. I didn't like that I felt this way about aging. I knew these thoughts were ridiculous and thought a change in mindset was in order. I decided to spend my year doing 30 acts of kindness. With my children in tow, we began leaving $1 bills in the toy bins at the 99cents store, paying for the people behind us at Starbucks, and leaving quarters at laundry mats and candy machines. We had so much fun with it! The slyness of it all, sneaking around, not getting caught, and oh the giggles. Truly, it was a gift unto ourselves.
And then it ended. 2 months after I turned 29 my world flipped upside down. Suddenly growing old would be what I would spend my life striving for. Suddenly aging became all that mattered. Would I even turn 30? Gone were the carefree days filled with giggles and ease. Joy heavily neglected. The pause button pressed. Watching and joining friends turning "Dirty 30!", I'd be lying if I said that I wasn't envious of the air surrounding their birthdays. Young, wild, free. I knew this year that my birthday would be spent boob-less, bald, blistered, and burnt. Like everyday, I would spend the morning at radiation but planned to share a wonderful evening with my husband who happens to share my birthday (I am 6 hours older!). Sadly, this Saturday, Adam's Great-Grandmother died at the age of 99. At 2am the morning of my birthday my husband flew out to Indiana to pay his respects to a woman he loved very much. Boob-less, bald, blistered, burnt, and now ALONE. Just as I was reserving a pity party table for 1.....This happened.
Today I have been flooded with emails, blog comments, and phone calls from strangers who have been touched by my children's random acts of kindness. A day that I thought was going to spent so dismal has been filled fully by joy and human kindness. I was anything but alone today. I am especially proud of my son, who went far out of his comport zone to make his mom's birthday wish come true. Today I am honored to turn 30. I am loved so fiercely by so many. 29 was spent fighting for my life. 30 will be spent living it.
A special thank you to my mom who made this sweet video and helped my kiddos execute the best birthday present EVER!
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I am not an easy person to be married to. I'm difficult on a good day. Add cancer to the mix and its a complete catastrophe. I do that thing that most women are guilty of: Where I fantasize about what I want my husband to do, never communicate it to him and then get pissed when he doesn't do it. In this case, I visualized Adam lifting me into his big arms and carrying me through this entire journey. Protecting me and guiding me through. Plowing through hurdles, lifting me up when I couldn't stand, wiping my tears and spinning me around in fields of daisy's. Sounds perfect, doesn't it? Just one problem, that didn't happen. Sometimes he did exactly what I needed, sometimes he gave me pieces of what I needed, sometimes he did everything wrong, and sometimes he didn't do anything at all. He is so overworked, he shoulders so much stress, and he doesn't know how to process it all. At times, the ways he has chosen to cope have been hurtful to me. Deal breakers. The way that I have chosen to cope has, at times, been hurtful to him, and others for that matter. It's a tough spot. We are 29! We have no freaking idea how to do this. We have been together for 12 years and this last one has by far been our worst. We fought harder then we have ever fought. We crossed lines, boundaries, and lashed out in some the worst ways possible. We are both already on the edge, it only takes the slightest nudge and we are at each others throats. We've been mean, we've been stupid, and we have been unforgivably cruel to each other. Because we are angry. We are both so fucking angry.
teenagers
Feb 18th 2003. Ayden Fox Ford was born. We've all grown up together.
Our wedding.
2011
I have learned through this to curb my judgment when it comes to how people grieve and cope with my cancer. Just because I need a certain level or manner of support doesn't always mean that person is capable of providing it. I realized early on that each one of my people were handed their own personal bag of shit. Adam was perhaps handed the biggest shit bag of all. If there is one thing that I know for sure, it's that my husband loves me. Cancer rocked my marriage and cancer almost ended it. It's not always the way it looks in the movies. People don't always do the right thing or know the perfect thing to say. For somebody who likes things to be perfect, to feel perfect, and to look perfect it has been a difficult lesson to learn. My husband loves me, he really does. This is so much more then he bargained for and I know he would swing me around in fields of daisy's if he knew how. Its honest, it's real, it's messy, and that's okay. Because the beautiful part is- I have never loved anyone else. It's always been him.
Our anniversary was yesterday, the 23rd. My brother drove me up to Stonebridge Manor, the place where Adam and I were married 8 years ago. Waiting for me on one knee was my husband. Tucked into our son's pocket was a dainty rose gold band that he handed to his dad. Adam asked me to marry him again and then walked me to the same alter where we had once said "I Do". Zoie sprinkled a basket full of rose petals down the isle before us. This time it was my husband that walked me down the isle, our parents and siblings standing with us. Adam read me beautifully humble vows that he had written and then my father-in-law, ordained by the world wide web, re-married us. It was beautiful and thoughtful and planned completely by Adam. It's not daisy's but I'll take it. I know that I am going to survive cancer and hope that my marriage will be a cancer survivor too. I am ready and eager to start a different and more evolved relationship with the man that was too shy to kiss me 12 years ago.
I panicked. I mean I really panicked. We're talking ripping off all my restraints, jumping off the table, and running down the hallways with my butt cheeks hanging out. Yeah, that bad.
Let me paint you a picture: I am laying in a mold that is fitted for the exact position I am to lie perfectly still in for 40 minutes. I am strapped to the table and told that if I move even one hair I could risk radiating my heart and/or lungs. All I have to do is lay there and hold my breath. I am told that I wont feel, hear, smell, or taste anything. Completely alone. Nobody can hold my hand, even the technicians are behind a protective wall. I am feeling strong, ready, and completely terrified. As the first blast of radiation goes into my body, my heart instantly palpitates. My chest is on fire, I swear I can smell flesh burning. I yell for help and the voice over the intercom quickly tells me to lay still. I am screaming "STOP!" "I FEEL IT!" and the voice again reminds me to lay still. Another blast of radiation shoots into my chest and I am vibrating with fear. I have no idea if they are going to blast me again but I am too afraid to find out. I rip off all my restrains and fly off the table. I'm sobbing, I can feel the crazy rising up in my belly. I can't do it. I won't. I'm done.
I dart out of the treatment room, refusing to deliberate. I know what I felt, I know my body, and I know that I have gone way too far into crazy town to be rational. I couldn't get out of that place fast enough. I had people literally chasing me, begging me to at least talk to the doctor. I just left.
The next two days I went into a deep dark place. I had to remove myself from my children because frankly, I was unfit to care for them. I needed to scream at the top of my lungs, I needed to get mad, and I needed to cry hard. I didn't need to reason, I needed to cleanse. I contemplated not doing radiation at all. I daydreamed about just throwing in the towel and going back to my old life. Ultimately, it always comes down to one thing. Life. I want to live.
After talking to my doctor and learning that although rare, it is absolutely normal to feel something, smell something, or even taste something, I felt better. But, mostly it was the copious amounts of Xanax that finally got me through my first treatment. I now have 3 full treatments under my belt, with 22 more to go. And at the end, I hope to ring the bell that only the bravest of people get to ring.
I have no idea what I am doing here. I just wanted to prove that without hair and boobs I am still worthy of all the same womanly ideals that I used to be privileged to. I am in transition. I am shedding skin. Trusting someday there is a butterfly emerging from this cocoon. I get that this is about embracing who I am, empowering woman, and breaking stereotypes.So why wear the wig? Because I feel better in it, I feel more like me, and I did this for me.I hate the short hair. HATE it. But I get the importance of shedding the wig... and I did.
Look #2-Wigless.
Back in May of 2013, the day before my very first chemo, I asked Brittany Janelle (Photography) if she would come take some pictures of me. I wasn't exactly sure why I needed them, I just knew for sure that I did. I needed to capture the woman I was in that fleeting moment, to give her one last time to shine, smile, and bid her a proper adieu. I had no idea then just how valuable those pictures would be. That girl is long gone.
Fast forward to now. I'm not whole, my body feels broken, forgein. This phase feels a bit like shedding, molting, cocooning. Pealing parts of myself away all while being completely unsure what lies beneath. I am right smack in the middle. Half of the girl I used to be and pieces of an absolutely new one. I don't know all the reasons why yet, but I know that I need to document it. I needed to prove that this too IS beautiful, pretty, and oh so sexy. Prove it to one person. Me.
Obviously, I had to have Brittany Janelle capture these images. I am at a loss for words to explain how grateful I am to her and for her. I literally could go on forever about how much I love her and how insanely talented she is. But instead, I urge you to go see for yourself. www.BrittanyJanellePhotography.com . Adorbs, right?! Thank you, Brittany. They are perfect.
There are a ton of pictures and a few different "looks". I am going to break it into 3 parts. Here is look #1!
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Yes we are matching...again. 
Our pocket full of fast passes keep us out of those pesky long lines. Cancer does have it's perks.
Ended our night with a spin in the tea cups. We are exhausted! Wait until you see tomorrow's outfit!
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