Shine Baby Shine❤️

For those of you who do not know me or know what I have been up to for the past few months, please allow me to fill you in. My name is Carl Schaubhut, and I am the proud father of two (Carr 9, Cate 6) and husband of a beautiful wife both inside and out, Alix. My passion and more often obsession for the last 20 years has been cooking.  For my adult life, my culinary profession fueled the artistic fire of creativity that runs rampant through my veins and brain, not easy to be replaced. In addition to this creative passion, the positions that I held as bar manager, cook, sous chef, executive chef, restaurateur were instrumental in providing for my family. Since age 18, I worked in all aspects of the culinary business.   

In addition to my professional pursuits, I am on a journey to fight against a raging gastroesophageal cancer, now end stage, over the past five years. My goal is not to be cured but to live the rest of my life as God is willing to give, and drugs and positive living are able to provide. I am no longer eligible for surgeries, clinical trials or radiation nor am I seeking any magic spells. Unfortunately, and maybe the most crushing, there is no more cooking. Due to a small fracture in my spine as a result of one of the tumors, time on my feet is limited.

Food which was once my joy is now an enemy because certain smells are nauseating and digestion is laborious and often impossible. My creativity, artistic part of my brain, and restless body refuse to simply lie dormant; rolling over and waiting for my maker is not how I can allow this to happen.

Upon advice from Alix, my mother, my therapist, and others, I needed a creative outlet and seek to fill my days with activities which provide joy. It was then when I traded in a skillet and plate for a paintbrush and canvas. I was inspired by a painter that I have loved since Alix and I lived in beach paradise called 30-A. His name is Justin Gaffrey and his style of painting is called impasto.  His older works are inspired by natural scenes such as sun, beach, trees, and other natural settings found in Santa Rosa Beach. I tried to do the same and discovered my own style. These artistic works are a source of joy, peace and consolation of which I am very proud.

Many started asking me if the art is for sale. At first I contemplated just giving them away. Then, my friend Preston and I collaborated to bring the website to life. He is the one who has helped me with financial advice and countless other things in this insane cancer fighting journey. He is part of our inner circle of people that have no idea the impact they have made on our lives.

So many people want to donate money to us for which I am forever grateful.  We find it hard to accept gifts as we have always been involved in the giving.  My thoughts are that once I painted these pictures and people could purchase them by making a donation on the go fund me portion of my blog site, then it would be best for everyone. Art lovers select a one of a kind painting. I could continue to fuel this creative drive still inside me. Purchasers of the paintings can help us support our family by paying off mounting medical bills and providing for our children.

The title of the endeavor is “Shine by Carl”. It’s a collection of sun scenes, beach scenes, and other abstracts created during this difficult time. Painting these works of art brings me back to the days of beach living, when I was a young chef in my 20’s, father of a new baby, husband of a beautiful wife…when no one could stop us and the thoughts of cancer, clinical trials, medical bills and financial uncertainty were not even a blip on our radar.

We were free; and we still are, just in a different way.  We invite you to come along another journey with us. There will be new paintings, new blogs, pictures, inspiration, hope, love, and when you don’t know what to do, just SHINE, baby, SHINE!

-by Carl

http://www.shinebycarl.com

Mom’s Journey on a Son’s Roller Coaster Ride

by Rose Schaubhut
When I reflect back on traveling with Chef Carl on this cancer journey, I continually compare my feelings to experiences of roller coaster rides. There are ebbs and flows of high highs and low lows. I experience highs with the outpouring of love and blessings from others. The lows hit hard when there is new tumor growth or a major complication. There is hope when receiving good news of the tumor shrinking. Hope leaves at the termination of the clinical trial with no offer of further treatment options.
After I experienced only a couple of the very tall, very rickety wooden roller coasters, I realized I do not like the ride. I despised the variability of the twists and turns. Going up and coming rapidly down left the pit of my stomach behind. I screamed in fright unable to catch my breath. My knuckles turn white from holding on so tight. You know the feeling, you might even enjoy the thrill but I despise the uncertainty.
Imagine watching your son or daughter on a roller coaster without the ability to direct the ride. Think about your experience of helplessness if you are a bystander hoping and praying that the next downward turn ends with a peak, which declares a cure. I experienced that same feeling in the pit of my stomach when the doctor said the tumor recurred.
Focused on faith and hope
Some nights I am awake, praying the rosary hoping to fall asleep. Some nights my head hurts from crying. I long for a happy conclusion to replace this nightmare. I bargain with the Lord, telling him “I lived a good life and I am happy to take over his fight”. I wish to take his place on this cancer journey but life does not give me that choice. Each of us must walk on our own individual path. I am terrified yet I hope that a possible cure is on the horizon.
I stay focused on my faith so that I can find the strength to go forward. The love of others surrounds me. My soul mate, my husband supports me. My friends and loved ones are there for me. The Lord brings me deep peace, understanding and consolation. My head knows that the hereafter is a better place yet my heart wants more time.
Mother’s closeness
A mother’s bond with her children is indescribable. Each child holds a special place in my heart. I fondly remember the times that I held this little baby boy while swinging in my backyard or breastfeeding him in the comfortable family rocking chair. He had big brown eyes, a full head of dark brown hair and a beautiful smile. When I kiss his head today, his scent is the same as that precious little one.
For the past short 36 years I relate to him by teaching him, coaching, supporting, protecting, nurturing, listening and staying quiet when needed. He was challenging teenager who tested the limits, used his smart manipulative ways to charm and navigate. Never did I ever expect to have his life confronted by this arduous journey.
Sharing and caring
Once he started cooking, we planned holiday meals and family gatherings together. Some of my favorite memories are having the entire family in the kitchen, preparing for a Thanksgiving or Christmas feast. When I would tell him that we were hosting a gathering of 25 he would say, “that’s nothing, we got this”.
He reminds me of his wonderfully kind and generous father in so many ways when he prepares a meal. Many people ask me if he gleaned his cooking talent from me. The answer is flatly NO, his dad is a much better cook than I. Chef probably got his taste buds and creativity from me but he teaches me cooking.
After Katrina, I remember when he was considering moving to Florida. I thought that his New Orleans job options were very good but I patiently listened to him describe the job offer in Florida. He moved to Florida and his career and personal life changed forever. Serendipity brought him to a place where he found love, a career mentor, supportive friends and a unique culinary community. One day we were traveling from Florida to New Orleans together. He told me that his new girlfriend is “the one”. He spoke of her so lovingly, with a unique spark. The minute I met his soon-to-be-wife Alix, she was a part of our family. I love her like a daughter. She was very kind to Alyssa (age 5 at the time) thus I knew she would become a great mother.
I went with him to buy her engagement ring. He selected the one that he thought she would like the best and planned how he would give her that ring. He expressed his desire to live the rest of his life with her, which was such a good choice. Florida was the birthplace of his son, our first grandson, another Carl.
Loved by so many
He has an uncanny ability to listen and probe when discussing issues with anyone. He lovingly understands me and expresses a unique perspective to any situation. I seek his opinion on matters, because he is objective and insightful. We discuss decisions, successes and disappointments.
He grew to become a handsome and talented Chef, a master at public appearances, a wonderful person, a shrewd businessman, a devoted husband, father, brother, friend, coworker and son. Amidst his cancer treatments and suffering, he opened two restaurants, hosted many successful culinary events, received awards and continues to give of his talents to philanthropic endeavors. He is an inspiration to others and loved by so many.
Finding our true destiny
Now when I hug my grandson, Carl, I see his father in him in so many ways. Our conversations of bargaining are reminiscent of those I had so many years ago with his dad. I hold him and his sister Cate close hoping to protect them from the sadness and grief to come, knowing that they must walk their individual path. I will never let them forget their father.
It is my faith, prayer, the Eucharist and devotion to Mary, which sees me through the bad times and helps me to rejoice in the good. A quote from an American Catholic Trappist monk, writer and theologian, Thomas Merton says it all.

Love is our true destiny. We do not find the meaning of life by ourselves alone-we find it with another.

Some days it feels as though the roller coaster is at the end of its ride. I sit at his side while he is resting, I talk to him, pray with him, watch him sleep, wake him up to eat and drink. I wait for the days that he feels good to be present with him. I assist when needed. I rejoice that every day is a gift but most of all, I am privileged to be his mother.

In Sickness and in Health

People always ask, “How do you do it?”  The question seems to cover all sorts of bases in my fight against cancer.  How do I stay so positive? I don’t. How do I have the energy to do everything I have done in the past 5 years?  I don’t. How have time to raise a family, be a good husband, and focus on my health? I don’t. I cannot do any of these things with even near the satisfaction I would like.  From an outsider’s perspective, however, I do them all in an extraordinary way. The only reason I come close to achieving these goals is because of my wife, Alix. I stay positive because Alix takes the role of the realistic one who asks the tough questions and shocks the doctors saying, “If this was your son, what would you do?”  No one wants to know or ask; Alix does because she is strong enough to know, not because she wants to know. I don’t have energy to take care of my kids and focus on my health. Alix is an incredible mother. She works her butt off, yet still makes the time to put the kids first, never spiteful that I sleep for 72 hours straight. When I have a philanthropy or restaurant commitment that I should probably have cancelled long ago, it is Alix who penciled it into her calender and makes sure we have extra family around, or extra meds around, so that I can fulfill my commitments because she knows how much these events help to make me still feel as if I have a purpose, or am in some way still “normal”.  Why does she do all this? That’s a damn good question. I, after all, have the easy part.

The easiest part in this cancer battle for me will be the day I die.  That’s all I have to do – DIE. I do not stay after filled with tears and heartache.  I do not have to juggle arrangements, financials, wills, money, etc. I do not have to look in the eyes of hundreds of people who give their condolences while half their head is tilted toward the earth in that pitiful look.  I do not have to answer to two young children on how this could possibly be fair that the God we teach them loves unconditionally could possibly have taken their father from them. No, I have it easy. Even during my 17 hour surgery, she would sit there with her phone answering text after text, phone call after phone call about how I was doing.  There was no copy and paste answer, that’s not Alix. She is the most personable woman I know. It is not fake either.

When we had just had Catherine, she got an interview with a medical sales company.  This would have been absolutely perfect for her. She has a medical background, a passion for health, and could charm the pants off of anyone.  She did not pursue the job, however, because she knew the hours and travel would be heavy. She wanted to be a Mom first. She also let me put my career first.  I never thanked her for this. Moreover, though, I think it was also hard to “fake” the sincerity she shows in her companionship with people. In her pilates, she is selling herself.  Even though she is her biggest critic, she still believes in herself, as do I. She is trying to implement preventative medicine, making people more healthy first, so they avoid body and mind problems later.  

Alix, this is for you.  I admire you more than you know, and more than I have ever said.  This is to all the husbands and wives of terminally ill spouses, who go too often unnoticed and underappreciated.  My goal is to live the rest of my life trying to make sure she is no longer taken for granted. It is much easier to underappreciated than over appreciate, and I have never been one to do things the easy way; just ask Alix.

~ Carl

Family is forever

What is the hardest part about cancer? When you are watching the cancer win. When death is sitting in our home, hovering and implicating that the time is near. It is becoming so obvious that even my 5 year old recognizes it is coming. For me, the original diagnosis implied a young life would be stolen; but prove them wrong I did. Alix called me a “Phoenix”, as if I was rising each time I fought and came out on top every time. It is hard to believe I am not rising right now. It is hard to believe i am losing small parts of my routine within my household and with my family. My corny jokes, my goofy attempts at flirting, and my beautifully terrible shower singing. These little things seem to be slipping away. It is quiet in our house. I am staying awake at night finally asking these questions I swore I would not. Why us? Why to our love? Why is this happening? I cannot for the life of me begin to understand. Now there is the ache to see our children now hurting. Their pain seems to magnify my own pain beyond levels I ever knew existed. Please go away death, as we need more time. Time is everything. But do we have more time? No one knows. The only thing we know is that we can control the way we live each minute. But even that is a farce. If we believe this is a farce, are we being negative? Conversely, If we continue to fight, are we being naive? Should we care either way? Are there answers? Who cares! Is there a timeline? Who cares! Are we going to be prepared? Who cares! Let’s live now. Let’s love now. Let’s laugh now. Let’s cry now. Above all, let’s do it together. When i am gone, there is one certainty; we will not do it together. I will be gone. So, do we really want an answer? Here it is. Let’s do it together! Let us laugh, cry, sing, hug, love, fight, eat, drink, travel, rest…together. Above all, we are a family. Families are forever, and do it all together.

Carl

“When you get what you want, but not what you need.”

Blogs have been less important to us over the past year as we have been busy working on the NOW. So when we write it usually is a sign that we have a major hurdle in our cancer journey. Carl has jumped a million obstacles and fought with eyes wide open this entire cancer walk. His pure heart is out there making everyone he touches better, believing in themselves more, and covers them in his light and passion for possibility. He has a gift, making dreams become a reality, endless belief in all that is possible. Fight. Fight he has. Everyday, chin up, positive, and loving so hard to everyone and everything his beautiful hands touch. It is with great pride and gratitude that I can say Carl is still here today after almost bleeding to death over the weekend. Carr (7) ran to our neighbor’s house to call 911. That call got him to the hospital and is buying us more time. He is my hero. Seeing your father bleeding to death would freeze even the best surgeons…..he was fierce in action amidst great fear. He is his father, which makes this difficulty seem less suffocating to think there is more Carl in this world. It is with a heavy but grateful heart That I am able to tell you that we are heading home to LIVE fully together for his remaining days on earth. Chin up, eyes open, and holding on to each other till death do us part.

“Live like you were dying….”

This familiar Tim McGraw song resonates with those of us that are flying through life with little regard that life is precious and can be taken at any point. Somehow facing this six months to live sentence could not be any further from this song. Living out your bucket lists become nearly impossible when you are fighting a disease that steals your energy and requires doctor visits around the clock. As I watch my love fight so hard, a clock potentially ticking in the background has me walking around this world as simply a shell of myself. How is this possible that you find your soul mate and he could leave you before we even had a chance to enjoy the fruits of our labor or grow old together. He has poured his heart on every dish for his entire career. Just getting started really, DTB built from his mind, to your table. His creative visions are endless. How could this beautiful mind be taken from this world? Despite the fact that we have been facing this, it seems to be more real now that we are out of options. How do we freeze time? How do you make memories with this much sadness. I am a fighter. Yet the fight in me is suddenly gone. I am not sure who I will become if this goes down. My entire world wrapped up in this love, my identity entirely surrounding my family. This week was painful, and it was only one week apart. We had a fuse blowout in our house, a speeding ticket, homework fights, and I just felt empty without you here. Every night falling into our bed, your side all made up perfectly, haunting me of the possible idea that this could be my forever. What would it feel like to not have you there to wrap my arms around, or lament about my day. All that I am in this world only seems to make sense with you by my side. What happens to me when you are no longer here? Am I strong alone or because of your love and faith in me? All these questions of death, don’t make me want to skydive. They make me look at my children and cry. They make me look at healthy young people and crave for more time together. I dream of holding hands forever. I pray for many more crafted dinners, beautiful wine, and freedom from all the pain he is feeling. I pray for our babies, I cannot even think about what will happen to them in this process. Every holiday feels special because it may be our last. This is like a slow painful crash, and we are holding on for dear life. Praying it won’t happen, but bracing for it. This is how it feels to live like you are dying.

Alix

A Boxer’s Quandary.

That as a boxer defends himself while his opponent is kicking his ass, often times these defense tactics weaken him as well. He then finds himself in the corner with his arms up in the only defense left. Cancer is kicking my ass, and my defense, chemotherapy, is weakening my fight. I am against the ropes; I am in the corner with my hands up. My support group in my corner has the white towel, and I have to decide if I want to throw it in before I am knocked out.

The mass that had started in my adrenal area has likely spread to the pancreas and spleen. Six months to a year is the estimate. SIX MONTHS TO A YEAR! I cannot process this. It is not in my DNA to give up. I cannot believe this, however, I can prepare for it.

Mortality has become almost too easy to discuss. I have made a will, planned a funeral, talked to God, Buddha, saints, therapists, gurus, and you name it. This will be easy for me. The ones around me who I love more than I ever knew I could, different story. In a selfish way, I wish my parents could go before me, so they do not have to bury a child. As morose as that seems, I think anyone with children can relate. My biggest struggle is to know Alix, Carr, and Cate will be taken care of. I hope they will. I hope I will be with them always. I do not, however, know anything. The journey has taught me that no one really knows anything when it comes to cancer. I do know one thing. Love is real. Love is forever. Love is all around me. As low as I will be, as low as people around me will be, that is how high they can be conversely. That is love.

My wish is simple. Live life in love and this short time on Earth will be so much more fulfilling. Thank you all who have loved me, it has made life more worth living.

Carl

Calling on Angels.

Dear Friends,

It is with great sadness that I begrudgingly sit here writing this blog today. The emotions of the last few days have been overwhelming to say the least. The amount of thoughtful and concerned texts, emails, and prayers are flooding in so fast I cannot even begin to catch up to say thank you or to even respond to what is happening.

We found out on Monday that Carl’s cancer has returned. The doctors also discovered a very small spot on his liver that came up on the scan. This means in the cancer world that we are stage 4 metastasized to his liver. Surgical options are off the table for now. To be transparent the only surgical option is so radical that his quality of life would be compromised and the risk for return is so high that it would not make sense to do that to his body. Instead will we preserve his energy and strength to fight via chemo to reduce growth. Most importantly, it is not at this point recommended by our surgeon. We trust him deeply. Many of you will ask what the hell do we do now? How do we fight? How do we get our miracle? We are going to do the most aggressive form of clinical trial that we can find. We are going to go to MD Anderson to see if they offer anything other than our beautiful team here. The answer is we are going to fight like hell.

I am humbled by the love of thousands. When all seems dark in our world  I am lifted a hair by the overwhelming “why him” feeling with the sheer idea that for this many people to love my husband -what a powerful life he must be living. To have this many people to care for us in our darkest hours he is clearly living his life right. I am trying to stay hopeful, as should you. We are trying to get our finances lined up and make choices about our kids futures. The thought of this makes me sob so hard I can barely see or breathe. I am trying to not be sad about the things I will one day be so deeply saddened by. I am trying not to think of being so alone one day with the worst case scenarios. Trust me. I will need those meals, hugs, prayers, and people to watch my children that everyone is angelically offering second after second one day. For now, we live. How lucky are we that we have so much love and help? I know when we are ready our friends and family will do anything.

I am trying to be strong, because somehow I gained this reputation during our last battle. I feel like that is a costume  or a facade right now. I am looking at it with more anger than you want to ever feel. I want to rip that strong costume up and throw it away because this is not supposed to happen to my husband, to Carr and Cate. He has walked his whole life in honesty, loyalty beyond measure, true fun, passion, and joy. He has been the friend to everyone, the mentor to many, the daddy who sings frozen at the top of his lungs with the most joy even though he has heard it ten million times just to make my Cate happy. I am looking at that strong costume knowing that I have not been able to shower for days, that I cant see or talk to my loved ones because it hurts so bad right now. I have decided that I am going to put that costume on soon. I need everyone to know that it may come off a million times over because the fear of how I will survive is consuming me. How will we give our children the life that we dreamed about? The planning for the unplannable is difficult. I try to not get ahead of myself.  Our dreams right now have be modified.

Carl does not want people to feel sorry for him, he wants to live his life to the fullest. He is cooking like crazy and eating every meal he loves right now in preps for chemo. For those of you who want to help please PRAY!!!!!!!!!

My dad sent me an amazingly helpful commencement speech given at Berkley by Cheryl Sandberg. In that speech she said, “option A is no longer available, so let’s go kick the shit out of option B.” That is what we intend to do here.  I am going to put my strong costume on, for Carl, for his family, for our children and WE ARE GOING TO KICK THE SHIT OUT OF OPTION B.

 

 

Port Removal Day

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Good Morning Friends! Today marks the end of our chapter of Carl’s gastro/esophageal cancer fight. The end of this cancer journey with surgical removal of Carl’s port.

I am sitting in the very spot I waited time and time again. It was in this chair I waited to find out that we in fact did have cancer. It is in this very chair that I waited for 16 hours as the hands of an angel worked to remove that very cancer from his stomach and esophagus. It is the people in this hospital and team that have given their hearts and life to help heal my husband every step of the way.

This entire weekend was nostalgic to say the least. From a cancer gala with the entire staff of doctors, nurses, and staff on Friday.  To dinner with our oncology nurse on Saturday. To meeting a wonderful lady whose husband did not make it through the very same esophageal fight, who gave me the most hope through her beautiful advice. Despite her outcome she was shedding light to me!!!!!

Today is the end. It is hard to believe all his has happened. We are so thankful to so many people the list in endless for all the prayers, novenas, rosaries, well wishes and donations! We have friends and family thet have held us up for the last year and a half. Life is very fragile. It is a gift and Carl and I are really trying our best to come out of this stronger and more authentic. I learned at the gala Friday that 1/3 people are affected by cancer, and it has no prejudice, we are all at risk.

I am so proud of my husband, he really is a hero. He has fought through every physical and emotional mountain and I am more in love with him today than ever. Cancer flips your world upside down, but somehow we now see more clearly than ever. I look at my husband everyday and think how blessed we are with God’s grace and healing! A miracle indeed! He is not only cancer free but living out his dream of opening his own restaurant in the city he loves the most!  My prayer has and always will be that we are holding hands at our children’s weddings! I am starting to believe that may be possible! The next 5 years are critical!! Prayer, faith, and joyful living is our path from now on!

My father in law said it best…….Blessed Father Seelos came through for us!!!!!!! Thank God! Closing the door on this chapter! Have a beautiful day, thanking God for your life and health! Thank you for praying for Carl’s healing, it worked!❤️❤️❤️🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻!

One Year Ago Today

It is so hard to think that just a year ago today, at this very time, we were packing up and heading to a small diagnosic procedure to see why Carl was having a stomach ache. Asymptomatic, and coming off his weekend of Hogs for the Cause Competition, I assummed it was an ulcer. Many of you know, the life of chef consists of an average 60 hour week, stress to put out perfection, an attention to detail, and unrelenting passion.  I know that stress to take whatever restaurant he has to the next level is something that will always be in my husband and he is not content until he has produced the best. Therefore needless to say, I put my scrubs on planning on heading to work right after, Bjorned Catherine who was 10 months old and assumed this would be a quick fix. I will never be able to explain the look in Dr. Awetrey’s eyes as he walked towards me post procedure. I had seen that look many times, and I knew something was beyond wrong. His gentle nature hugged us as he broke the news. I ran into room with a nurse, a perfect stranger, and she watched my world literally fall apart. I wanted to be strong for Carl. At that moment not knowing who to call or what to do. I dreaded the idea of calling Carl’s mother. I dreaded calling my own mother knowing that saying it would make it so real. I called my work and cried as I conveyed the nightmare I was living to the wonderful physician I was working for.  She sounded as shocked as I felt. The idea that Carl had cancer is still not something I have totally wrapped my head around, even a year later it seems so impossible that we have been through this. I remember just a week earlier hearing about a lady who lost her husband to an illness.  Hearing this, I said to a friend of mine, if that ever happened to me I would just die. Well I am still standing, we both are! More than that, I feel that we have come on the other side with tons of scars and emotions but stronger in faith, stronger in our identity, and more love then I ever knew possible. For the first time I feel like I really know myself.

Monday we had to have another EGD, and we held hands not saying much about the fact that it was exactly a year ago that this all started. Thankfully the EGD revealed a stricture, and an ulcer which gave great explanation to his symptoms. Again another sigh of relief, we are still okay. This life post cancer, is one that is like riding an emotional farris wheel, up and down you go. The hightest highs, and the lowest lows. It is hard to get back to normal after living on adrenaline for a year. Part of you yearns for the simplicity of life to return, but at the same time making sure that you are living with purpose is something you feel that you owe to all of those whom are not able to say the word remission, who are not strong enough to return to work, who are alone raising their children without their partner due to loss in life. Cancer is real, it is absolutely like a wrecking ball crashing your former life in a quick second. It steals strong, beautiful people.  Character and strength are absolutely no indicator of your winning path. I have seen many strong people lose this fight. Your ears and eyes begin to seek the stories of cancer once you are in it, especially as the caretaker, or the spouce. You are dying to hear how others made it through to validate your feelings, someone who can understand how you feel through this uncontrolled illness. It is like a ghost hiding in the shadows, it can disappear or reappear at anytime. Living life in low-level fear is my new constant. Trying to use my energy in a real way to help others, to reach out letting people know the trials of cancer. The fear of its return is something that often I feel people assume is my negativity, and that can truly anger me, because I am a positive person. What often is misunderstood about preparing for its return is just that, it’s preparation. Young cancer wives and mother’s do not have the option to lay down and cry in bed all day when the worst times are upon you. You become the bread-winner, the father, the consult to all those who worry, the organizer of health, the nurse, the therapist. This role requires so many hats, and so much energy, to be taken down with shock is not possible. Remember this to those of you supporting someone with cancer, thinking about its return or preparing for it is not negaitivity, it is their way of standing strong getting ready for another fight.

Thankfully today we are on the otherside of cancer, more tests revealing that we are still cancer free. I wonder how many years it will take before we are finally be able to relax in the idea that remission could be permanent. I know if there is one person who can kick cancer it is my husband.

I want to honor his life today. This day brings up all kinds of mixed emotions for us, it becomes like a very serious birthday where you evaluate your life and take stock in all the good and wonder how to make the not so good things have purpose or meaning. I woke up to my husband this morning, and what is crazy is that is my thankful prayer today. That he is alive, well, able to exercise, able to eat off of a feeding tube, able to throw our children in the air…because there was a time when he was only alive and unable to do any of these things. There were times when we gripped eachother in tears unable to know if we were strong enough to make it through this. Yet, with God’s grace, we have!

In this past year we have learned so much about life, and have been able to let go of the frivilocities that once had us racing to have more money, cooler cars, better this, better that. I honestly was the one who cared about this, not Carl he has always been a grounded man. It has been so humbling to have hundreds of people help us through prayers and donations. It was hard to accept at first, having to lay our pride aside and realize that this diagnosis was beyond anything most prepared 30 year olds could afford.

Two rounds of chemotherapy, one round of radiation, a partial gastrectomy, and total esophagectomy and we are cancer free. There are so many angels who have held us up along the way. Our parents who have tended to our children in times of sheer exhaustion. Our dearest friends who helped raise thousands of dollars and saved us from financial ruin and were there for us at all times. It is Godly to realize that the exact amount that was raised covered the exact cost of all of our medical expenses. Our co-workers and employers who were so kind during this stressful time, thank you for all that you did for our families. You will always hold a special place in our hearts. Our prayer warriors, and my bible study group who continually keep me grounded in my faith. Our amazing team of physicians, PA’s, nurses, and everyone who cared for us along the way! A special shout out to Dr. Bolton and his team, Dr. Satti and Jill Fitzpatrick and their staff, and Kristen Koehl. A special thank you to my mother who literally lived on and off at my house, and took a leave from work to care for my children and helped us with everything from laundry to discipline. She gave me hugs and wiped the tears from my eyes on countless occasions. She has been my rock, and my surrogate husband when Carl was unable to get out of bed. I only hope that I am able to convey to all of you how special my mother is. She has given her life to her children and now grandchildren. I pray that I have her strength and her gift of selfless care-taking. As boring as this is to read this oscar-style list of people to thank, this does not even begin to express our gratitude. Cancer, in our eyes, was God’s way of opening us up to all the blessings in our life. We were able to grasp the fragility of life. We struggle with the thought of its return, and the idea that esophageal cancer is still so understudied. The fear of the return is something that is so real for us, and we pray to live each moment with full purpose. The aftermath of cancer is quite difficult and we are still trying to get our bearings, to rebuild our new life. The wife role is scary, learning how to let go, and not micromanage is so hard. The emotions anger, sadness, fear, joy, pain, and exhaustion are still very present. The shock still there, but the joy and hope of survival starting to creep in, and become more real. We are thankfully, joyfully exhausted.

I want to take a moment to speak about my husband, my hero. Despite the many times I truthfully cursed him as he slept off all the medications (I would be lying if I said otherwise), in the depths of my soul I have never been more proud of someone I love. He is such an honorable and good man. Despite cancer, he always kept his promises (sometimes that meant not making any). This journey forced him to face his fears, and instead of blaming others, or turning away from these emotions, he faced them head on. Anxiety and fear, something he generally does not admit to, became very real. He faced it, chin up, and for that I am so proud. This was not easy. It has been hard to write about our journey through the emotional rollercoaster of cancer. I decided to document the reality of our love and the reality of cancer. I wanted to leave a legacy of how strong Carl is, God forbid if anything ever happens to him. I want our children to know just how hard he fought for them. I want them to know his integrity, his big heart, his endless love for them and me.  I want them to know how lucky they are to have such a special Daddy.  Our constant prayer is to be holding hands at their weddings. I pray that they will grow to know the amazing man who their father is, that he is able to keep them forever at the center of his energy and promises. Carr innately is so much like his father, and I pray that he is able to continue to grow watching his  daddy as his role model. That he will be just like his daddy! My feelings of worry seem to be worse in regards to my children, I wonder if they will ever dull to the background, and that “normal” life will be able to take center stage again. Part of me longs to be normal again, just to silence the worry. The other part of me could never go back to the frivilocity and mind-set we had before. The things that we placed importance on, like house, cars, material things all seem silly if you no longer are able to share them with the one you built your life with. Living a simple life is all that we desire these days. A year ago today I loved my husband, but I had no idea the depths of our love until we took this journey. We made it on the other side, and I have never loved him more. I am so proud of him, I am so lucky to be his wife, and that we had our babies when we did. Not sure that anymore children will be in our future, and it makes me so sad to think that i will never carry anymore of his babies. That being said, God has blessed us with this beautiful family, and we are alive, cancer free, and able to celebrate life together, and for that I am eternally grateful. Happy One Year my love, may this day always be a reminder to follow your big dreams, and live to the fullest. The fight continues as we always walk this path together in love.

Alix