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

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