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!
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.