Keeping my word.

Hello my sweet friends. We are in a tough spot, that is about all I can say about this phase of cancer. After such a big surgery, Carl is having a very rough respose to his new chemotherapy regimen. He is weak, exhausted, and nauseated all day. His beautiful head of hair has begun thinning, and energy is at an all time low. Today we went in to have chemotherapy, and were advised to break because Carl is Neutropenic. It is almost comical when you are at risk for infection with two toddlers……enough said. I must say that it is hard to imagine doing this for eleven more treatments, but the alternative is also just as scary.

I have realized with-in my heart, after some hard praying for patience, that I am working through those vows I spoke on the alter. To LOVE (not just be) in sickness, and in health, in good times, and in bad, for better or for worse….TILL DEATH DO US PART. It is interesting to think of that sweet little story I played out in my head….boy meets girl, white dress, babies, houses, careers, and growing old were all in those dreams, never once did cancer enter that story. This is real, this is hard, this is true love. It is not always fair, it is not always pretty, it is not always easy, or self benefitting. It is love, and with it came my promise to give that love, in all times, not just the good ones. I have have been doing a lot of soul searching about how active my love is in the good versus the bad days. How much added stress do I bring to my day to cloud my judgement, and make me less of a loving wife and mother. I have also been searching for the things that truely matter, and erasing the things that don’t. I am not sure if anyone is good at cancer, but I have to say, I am liking the person I am today so much better. I feel more like my authentic self than I have in years. Being true to myself allows me to be able to give more love. It is a time when I am listening to my heart, and living with my soul in all avenues of my life. The fear is gone, because the scariest thing that I could have imagined, is now unfolding in front of me. My heart, my soulmate, is sick and this has become very real for me and my children.

It is my vow, my promise, my heart that is in charge of this family right now. My actions on a day to day basis are what determines our future emotional-well-being in this house, and that means setting the daily pace for positivity and love. Truth, I am not always feeling positive. Another truth, it is scary to be alone all the time. The last truth, I now know that I can be alone. God forbid if that happens, as freeing as that truth is, that life would leave my real heart dead. So with all this truth on paper (virtual paper), it is now a second vow……I am to love, and keep on loving through all this sickness and bad…..so that we can celebrate all the good that started our sweet little family. Truth be told, I have done many things wrong in my life, but marrying Carl, being his wife, and having our beautiful children are the choices that I would do over, and over, and over again. That is real love. You stick together, even when worldly circumstances try with every ounce of energy to break you. We cannot be broken, in fact we are holding on tighter then ever. I thank God everyday that I gave my vow to Carl, and cancer can never take that away, nor will I let it break my promises!!!

Alix

Living for my Family.

I am sitting in an all too familiar seat atop the Tom and Gayle Benson Cancer Center at Oscher Hospital on a Friday morning with tubes running from my chest to a machine.

Today, I am not here for chemotherapy, but for simple fluids just to stay on top of potential dehydration throughout my long road to recovery.

One month ago, I underwent a surgery that changed me mentally and physically forever. And it has been one heck of a roller coaster ride since they finally got me “put down” on July 10th. When the 12 hour surgery concluded, Dr. John Bolton said it went beautifully with clear margins achieved. Overall 41 lymph nodes were removed, as well as the tumor that sat in the junction of the stomach and the esophagus. Nearly ¾ of my esophagus was removed as well as about 2/3 of my stomach. The remaining stomach was then brought up to my remaining esophagus for a “new” esophagus, and what was left is less than 1/3 of my original stomach capacity. They sent all the removed items to pathology; and the hope was that no living cancer would be detected within the tumor or the lymph nodes. We were not that lucky, however. 5 out of the 41 lymph nodes still had detectable cancer and about 25% of the tumor showed signs of living cancer well.

While this is not necessarily the best news, it is not the worst either.The affected areas are, in fact, removed. And we did get what the doctors called “clear margins”; meaning all of the cancer in the affected area was removed. Since the cancer that was still living was undetectable by PET scan, we will be doing a precautionary round of chemotherapy (16 weeks of a combination of inpatient and outpatient), which will once again bring me back for regular visits to the fifth floor of this now familiar building. This time, I know what to expect. My cancer treatment team has become like family. We feel comfortable here. We know our way around, and it is good to see familiar faces. It’s almost like a reunion. (And you know we love our reunions in New Orleans!) With this round, we will see if this stubborn Italian head of silver/black hair can withstand another treacherous chemo drug combination! I am thinking some hats are in my future, but you never know.

One thing I know I need to do in preparation is become stronger.

Recovery from surgery has been a whirlwind. This is one of the most intense, stressful, and complicated surgeries that can be performed on a human being. They created a brand new G.I. system for me; so the way I eat, breathe, sleep, walk, cough, sneeze, and even yawn is all different. I have to re-train myself to do all of these once simple, overlooked motions. To help with eating, I have an insurance policy in the form of a feeding tube that I get calories from at night. I am still on minimal pain medication, but the slow process of weaning myself off of narcotics for over a month has led to some nausea and other complications. There are also many emotional struggles that one faces after such a major surgery, that therapists call post traumatic stress syndrome. I experienced a lot in the ICU that I will leave out, some of it pretty graphic; but those experiences will stick with me forever.

I am moving forward though. 20 pounds leaner, I have a gentle exercise routine, and am beginning to eat foods on my own more regularly. There have been days where I have looked at food in disgust, as if it were a foe. It is hard to imagine, but all too real.Through cancer we have not been very fond of the saying “one day at a time,” but this really is the only way to approach recovery. Every day is different. There are days where getting out of bed is not a possibility, leading to depression, appetite suppression, and dehydration. These are the days that will kill you. You have to fight. You have to get up. It is hard, but it must be done. I think of all the support that has come our way in the form of donations, prayers, cards, actions, and I use this for motivation.

Mostly though, I think about Alix.

I think about our two children having a blast in the other room. I think about Carr and Cate. They know their dad is sick, but they will not take that as an excuse to try to climb in bed and smother him with hugs and kisses. They are why I must get up. They are why we are going to do another round of chemo. They are why we are going to be cancer free, and live our life to the fullest.

I am just living one day at a time, and for that, each one will become the best day that I have ever lived!

 

Carl

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The reality of Cancer

The lack of communication on our end is in no way an indication of our lack of wanting to reach out to all of our amazing support system. Life since we left the hospital has honestly been full of the lowest lows, and a few of the highest highs (babies coming home). I have been short with words at this time. To be honest the feelings we are having are so raw at this point. Cancer has become real. The inability for a chef to eat, constant dry heaving, nauseated with every smell under the sun. Life is very difficult. Recovery is slow. We are finding joy in the smallest victories.

Cancer is so scary, how it creeps in unnoticed, and literally changes your entire life. Right now it feels as though the symptoms are winning to Carl, for the first time he feels weak, unsure, and like the cancer is getting the best of him. Food is his life outside of family. It is physically painful for him to eat, and that is more heart breaking than the diagnosis itself. Simple things like yawning, coughing, and hiccups, are extremely painful. We are working each day to set small goals to increase normal activity. Prayers are needed at this time, more than ever. For my children, for myself to keep patient, and for our parents who have been here around the clock helping us since we came home.

A special thanks to Oschner, Dr. John Bolton, Siobhan, and all the nurses on the GI Step Down Unit and ICU. I have never seen such flawless nursing in all my life (that is saying a lot considering I have worked almost every avenue of nursing care). Their pain management, time management, endless attention to details made for an excellent experience. Our surgeon, and his team of surgical residents were at our side night and day, they were tirelessly working!!! Our surgeon was incredible. The cancer was all removed, and our margins are clear. The worry and reason for additional chemotherapy is that there was so much cancer still living and 5/41 nodes removed were positive with cancer, and 1 cm of his tumor had living cancer. We will be doing 16 weeks of chemotherapy that will start in 2.5 weeks or upon healing from surgery. Thank you all for all of the love and support. Carl will hopefully be turning a corner soon and able to starting feeling up for visitors. At this poing he is so nauseated that it is difficult. Thank you all for your prayers and continued support.

Two Steps Forward, Two Steps Back.

​The past week has been a long and grueling time for the Schaubhut family. Carl’s 10 plus hour long surgery went very well. As we spent these long hours in the surgery waiting room, I was not afraid, confident that the surgery would go well and it did. The days in ICU were difficult for Carl as he struggled to deal with multiple tubes, IV lines and wires attached all over coming from everywhere. He was scared and rightly so but he progressed very well getting stronger each day.
It was great to walk with him each day as he showed just how strong he truly is while progressing in his healing. As he improved each day, he felt the strength of the support of all who are sending prayers and well wishes his way. The barium swallow test on Wednesday showed that there are no esophageal leaks which mean that the esophagus is healing well after surgery. Today, he took his first shower in a week and is homeward bound.
​The pathology report which we received today showed good results as only 5 out of 42 lymph nodes contained cancer cells. I hoped for great results where no nodes were positive. The tumor which was removed still had some living cancer cells. What does all of this mean for his recovery? He will probably require another round of more aggressive chemotherapy after post-operative healing is completed. This news seems to be the worst blow yet in his fight against the disease yet the oncologist is encouraged by the clear surgical margins and his progress thus far.
Today, the cancer diagnosis is very real and the road to complete recovery seems very daunting. While I am grateful for the expertise of Dr. Bolton who accomplished a complete surgical removal of the tumor, the wishful thinking that a complete cure at this point is not present is upsetting to me today. It is difficult for me to see my dear son suffer physically and emotionally. While he is comfortable to be home in his familiar surroundings, all is not close to being back to any sense of “normalcy”. Feeding through a tube is Carl’s reality for the months ahead. Eating is a sensation which will not be experienced in several weeks. This may not be so important for some individuals but this is very difficult for Carl as a chef whose passion is the creation of food which is enjoyed by and shared with others.
Thus the roller coaster of emotions continues. The highs of getting the chest tube removed are replaced with the lows of the pathology report results. The Lord is taking care of Carl and all of us during this difficult journey. The Lord has blessed Carl with a wonderfully loving wife, siblings, mother-in-law and friends who are not flinching in standing by his side to provide him care and support. He is also blessed with a great medical team of caring individuals. For your love and support, we are forever grateful. These are the blessings of this cancer journey. After all, tomorrow is another day.

 

Rose Schaubhut

Post-op day one and two- so far, so good.

Hi everyone! It’s Vicky again. I wanted to share the latest update from Alix on how Carl is doing. As anyone who has ever had surgery (or taken care of a loved one who has) can attest, the first 24 hours are always pretty rough. Sleepy from anesthesia, sore in places you didn’t know could be sore, sleeping in a hospital bed covered in plastic (eeeew) that likely has the worst pillows anyone has ever encountered. That pretty much sums up what Carl has been through over the last day or so. Yesterday his nurses got him up out of bed for the first time and he is continuing to progress well. Slow and steady is the name of the game, and his initial recovery has been no exception to that. He has gotten stronger every day and really has made awesome progress! Alix and Rose have been in the ICU at his bedside as often as the unit will allow, and at this point his team is preparing to move him out of the ICU. Alix says he is as strong as an ox and a pretty typical if somewhat grumpy patient (that’s a good sign, haha). Some things to be aware of…at best the surgical unit will allow only immediate family members to visit, and the decision has been made to restrict Carl’s visitors even further while he remains in the hospital, due to his need for rest and recovery. We all know that our chef loves to host a crowd, but he’ll have to wait a bit to do so- doctor’s orders for now. Please keep prayers and positive thoughts coming for speedy healing and smooth recovery- they are working!!!

Vicky

Surgery is done!

Hi all- this is Vicky, Alix’s big sister, with an update from Team Schaubhut over at Ochsner. As of about 6 PM Carl’s surgery is finally finished and he is now headed to recovery. Surgery went well, albeit a little longer than anticipated, mainly due to the fact that Carl’s anesthesia needed to be tweaked in order to get him correctly sedated. I teased Alix that maybe they should have just given him horse tranquilizers instead, ha ha. Anyway, his surgeon reported the encouraging news that his lymph nodes didn’t appear enlarged at all- a sign that the chemo and radiation did their jobs as we all hoped- and the pathology will confirm in four days’ time whether he is cancer-free. Please keep Alix and Carl in your prayers. Although we can chalk today up as a win, they still are facing recovery in the hospital and then at home, with a long few months of adjustment. The prayers and positive thoughts are helping- and. I know they are both feeling all the love! Stay tuned- more updates to come!

Update

Surgery is still a go! Took a lot of meds to get this Catholic New Orleans boy down. Surgery could be longer than expected. Not much else to report. Please know how much we appreciate all the support! Alix

Thanks and Prayers

Surgery is set for July 10th. Carl will be undergoing surgery with the most incredible team of surgeons. We cannot express in words the gratitude that we feel for all the support at The Cannery. The venue was gorgeous beyond words. The turnout was insane!!!! We felt so much love that evening, and so many of you telling us personally your positive thoughts and prayers for us was energizing in a way that I cannot describe. Yesterday we watched our two children fly off with their aunt and uncle, and this of course has been harder on us then on them. It has been oddly quiet in our house today, and I wonder how I am going handle not having them to buffer my fearful thoughts. They are off to vacation and Lego Land, and are happier then ever. Carl and I have quickly realized that our children bring forth a purpose in our life far beyond measure , and one which we never comprehended until they flew away on that plane. Below is the speech written by Carl, and read at the benefit. It is an attempt to represent our thoughts on being able to thank all of you supporting us. We are in fight mode at this point and gearing up for surgery. Carl had a recent PET scan revealing that his tumor has responded well to treatment,  as well as the positive lymph nodes. This news was so relieving to us. God is on our side, and we have felt his presence through all of your love, prayers, donations, and support. Today a special thanks goes out to The Loews Hotel, The Drew Rodrigue Foundation for their incredible push to create this beautiful event, Commander’s Palace for their intense marketing and amazing contributions, the incredible donations, and all of the amazing food/chefs at the venue!!! The list goes on and on!! We pray every night with our children for the day that we are cancer-free and able to pay-it-forward. The love, support, and philanthropic effort of this city is why New Orleans is so special. Please know how thankful and loved you have all made us feel. Together we know that we will Kick Cancer in the GUT!!!!!

 

Alix

http://photos.nola.com/4500/gallery/kicking_cancer_in_the_gut_at_t/index.html#/7

 

Carl’s Speech June 28th, 2014:

Since the diagnosis that I received on April 1st, everything has seemed rooted in hyperbole. With a few exceptions throughout all my treatment of chemotherapy, radiation, and the poking and prodding of my great medical team, I heave felt pretty normal physically. I have not lost my hair, but have actually gained a few, most of which are either on my face or grey, of course. I stand in front of you a very sick individual by definition, but I feel mentally stronger than ever. Most importantly, I feel unbelievably loved.

 

To stand up and thank everyone who has contributed would not only take the entire night making the band quite frustrated and could not even be properly conveyed through simple words thank you. We have also given and received no shortage of cliches though this process. One of my favorites has been the old adage that my parents used with vigor as I grew up which is, “Actions speak louder than words.” We are here tonight because of the actions of so many people in this great community and across the country. They have been in forms of family, friends (both past and present), colleagues, and even total strangers. These actions for us have come in forms of prayer groups, cooking, cleaning, home improvement projects, baby holding, and financial support to name a few.

 

It has been with much reluctance that we have accepted this help. I feel that we are by nature givers, and are not used to, nor have ever thought we would be on the receiving end of this support. If you could think of anything a family dealing with this type of hardship could want or need, we have gotten it. For that, I will be forever grateful beyond words. Many people do not even have the opportunity to get proper health care in the face of death let alone have a support system as large, intense, or unconditional as ours. So often, people pass on without ever really seeing or hearing of the impact they made on people’s lives. It have been so humbling to see that what we have thought as simply living good lives and trying to be good people has affected so many other people who now want to return the favor. “Do unto others as you would have hem do unto you.” I promised myself there would be no bible quoting through all of this, but this golden rule has been key in my ability to accept much of this support, especially that coming in the financial form.

 

I feel that good people surround themselves with good people. I married an amazing woman, with an amazing family. I was blessed to be born in a loving home with great parents and siblings. We live in a city with friends that have a culture of unconditional love for our fellow New Orleanians. My colleagues and employers selected me and I them based on a culture of just being damn good people. That is why we are all here. These people by nature are good. They want to help those who need it. Just as I have and will continue to do. This is the love and support I hope to provide for the rest of my life for those living and dealing with cancer. Our battle is not close to over. In many ways it never will be. But I know for certain that I am surrounded by love and support for the rest of my life throughout this lifelong battle. It is a blessing to be enlightened to know that.

“Overwhelming” is a word we have used a lot and goes back to that hyperbole I spoke of earlier. I told a good friend after about a month of letters, stories, prayers, relics, meals, funds, and stories of encouragement that we have been overwhelmed more in a positive way through all the support that we have been overwhelmed in a negative way by the diagnosis and illness itself. And it is when the positives out way the negatives that victory prevails. And the imminent victory that will come our way after recovery from the surgery in a couple of weeks could not have happened without the love and support of so many people both here and all over the world. Thanks you and enjoy your evening.