“I am honored to be writing this blog post, to have fundraised for Salgi Esophageal Cancer Research Foundation, and last but not least to honor my Dad, Richard “Pete” Smith who died on February 2, 2017 of Stage IV Recurrent Metastatic Esophageal Carcinoma.
My name is Sarah Elizabeth Smith. I am from Toms River, New Jersey and prior to December, 2016, I honestly knew Esophageal Cancer existed but had no idea how devastating it is. You are probably wondering a little more about me. Well, I am in my 30s. I work in Environmental Health and Safety and I am an Emergency Medical Services Provider. I have a wonderful Mom, Kathy Smith and wonderful siblings, Jen, who is married to Kurt and they have two daughters, Annalisa and Isabella, Rick who is married to Lisa and they have two sons, Brandon and Justin. I have a Shih Tzu named Barnaby and a cat named Tyson. I love to travel, read, wander around Target, and live life as it comes. I am very involved in my church, Christ Episcopal Church in Toms River, NJ. Overall, I am just your regular person who happens to have been impacted by Esophageal Cancer.
For a few months prior to December, 2016, my Dad began experiencing swallowing difficulties, felt tired, and generally a little different than usual but did not really make a big deal of it. On December 24, 2016, my Mom, Kathleen, Dad, Cousin/Godbrother John, and Aunt/Godmother Vickie went out to dinner for Christmas Eve as the family usually does. At dinner, my Dad could not get anything down and from there, things quickly progressed.
Shortly after Christmas, my Dad made an appointment with a Gastroenterologist at the practice that I use and the Doctor ordered and scheduled an Endoscopy. My Mom and Dad went to the Surgery Center the day of the Endoscopy and received the news that the Doctor had found a mass and that he had biopsied it and sent a tissue sample out to the lab for evaluation and testing. We waited for what felt like an eternity for the results. Shortly after January 1, 2016, we received the devastating news that my Dad had Esophageal Carcinoma.
Shortly after receiving the diagnosis, my Dad had a more in-depth Endoscopy and a PET Scan. Ultimately, he had Stage III Esophageal Carcinoma upon initial diagnosis in January, 2016. The treatment plan was weekly chemotherapy and daily radiation, followed by a period off and then an Esophagectomy would follow some weeks later.
Initially Dad did so well with the Chemotherapy and Radiation. He had retired due to a long commute to and from work and because he wanted to be able to focus on getting better but he believed had he lived closer to work he would have been able to continue working to some extent. Dad really remained quite active and positive during this time. He had few side effects and really felt an improvement in his swallowing, as the mass reduced in size. With the Doctors and family, Dad had decided it was best to have a feeding tube inserted so that he could receive the complete nutrition he needed and to keep his weight up. We were all amazed and so proud of him. We were thankful for the Doctors and all the medical providers that he was being treated by.
Dad was a deeply religious and spiritual man. Each day he would pray the Rosary and he said he really felt God would take care of him. He thanked God each day for the treatments available and having his family and friends by his side supporting him.
During the break from treatment, Dad and the rest of the family enjoyed time together and he remained active and really made sure he was in the best shape possible for his upcoming Esophagectomy. In reality, the entire family was making sure we were in the best shape possible to support and care for Dad. It was honestly the calm before the storm.
Monday, May, 16, 2016, would be the big day. Dad would have his Esophagectomy done. We would finally be done with this whirlwind of chemotherapy, radiation, scans, blood work, etc.
The night before surgery, my Mom and Dad went to a hotel close to the Capital Health Medical Center Hopewell Campus in Pennington, NJ, and my Mom reported that my Dad ate a little from many local eating establishments close to the hospital and prior to the midnight pre-operative cut off time. I was glad they had this time together. My Mom would be staying in the hotel for at least one week after my Dad’s surgery so, like the caring guy he was, he made sure Mom was settled in for the week.
I barely slept that night and apparently I was not alone. My siblings reported they had difficulty sleeping, as did my parents. The surgery was scheduled for very early in the morning so I woke up very early and made the hour drive to the hospital where I was met by my sister Jen, brother-in-law Kurt, Mom Kathy, and Dad.
Dad was quickly taken to the pre-op area and a lot of things happened. We all got to be with him until he was taken into surgery. Then the waiting began. It was a long wait. Finally, Dr. Rosato came out to speak with the family. He said that he was unable to approach the surgery from Dad’s chest due to radiation damage and that he had performed the procedure via an approach through his neck. He was concerned about recovery but said that we should remain positive and that should his concerns become reality, we would all discuss them then. He assured us that the procedure went well and that we would be able to see Dad soon. What a relief.
We were taken to a family waiting room close to the Intensive Care Unit where we would wait for a while and then the Nurse came to get us to bring us to see Dad.
I honestly was completely relieved upon seeing him. We had been prepared for a plethora of possibilities, including Dad being on a ventilator for some time after surgery. There was no ventilator and we were dealing with the best case scenario. What a relief.
My Dad was aware of our presence and he took the breathing mask/non rebreather off his face and stated, in a Darth Vader voice, “I’m alive” and then went to sleep. We all laughed hysterically. That was so something Dad would do. Always trying to be a comedian and make people laugh.
The days in ICU were difficult for everyone BUT each day Dad made progress and we did as caregivers as well. Pretty soon after Dad was moved to a private room in a regular medical surgical unit. He continued to make progress. We were excited and incredibly impressed at the progress and how well he was doing mentally and physically.
Soon after he was discharged home. At home it was hard at times for everyone but he continued to make progress and was doing well. I finally saw the light at the end of the tunnel. I felt like maybe we would look back at this years later and be proud of Dad and the entire family for getting through this horrible time and that it would help bring us closer together.
Dad did incredibly well throughout the summer and early fall. He walked miles around the mall. He went out as he could. He even began driving short distances and started participating in family events and things really looked great for him and the whole family.
The fall came and he started experiencing aches and pains and overall did not feel well. In what still feels like a blur, Dad had a hernia operation and then had an emergency surgery for a complication of that operation. He also was losing weight so he made the decision to have the feeding tube reinserted.
In December, 2016, after another PET scan and some other testing, we received the news that Dad’s cancer had returned and this time it was a Stage IV. This was not at all what we anticipated hearing or dealing with this holiday season but we got into the mental and physical space that we would deal with this as best possible. Dad began chemotherapy immediately and did well the first round. He was albeit weak but in good spirits.
The second round of chemotherapy was the beginning of the end. He began experiencing side effects and was uncomfortable and in a lot of pain. He was very weak. The Emergency Room visits began. Eventually he was hospitalized because his immune system was in very bad shape from the chemotherapy and cancer. He spent many days in the hospital this time. Eventually it became apparent that these were Dad’s last days. Eventually he insisted on coming home. Hospice entered the picture and they made it happen for him and for us. I had no idea what an invaluable blessing hospice would be for the family.
Dad came home and the family never left his side. As each day passed, Dad became less and less mentally present until he was bedbound and completely unable to speak and was unresponsive to us. I knew he was still there and would sit and talk with him but I felt this unimaginable pain. I knew that this was the end. Hospice made this whole process much easier. They gave me a sense of peace and I felt loved by people I had just met.
On February 2, 2017, I administered Dad’s medications at around midnight and a half an hour later, he had died.
I felt this strange mix of emotions. I felt relief that he was not suffering anymore and that we could finally start to pick up whatever pieces were salvageable and try to make sense of this loss and time and begin to heal while grieving. I felt sad, which is an obvious emotion when one’s Dad dies. I was angry that my Dad was gone. Angry that he had suffered so much and that he would not be around to call and spend time with.
The next week or so was a blur. We had Dad cremated and had a Celebration of Life. We took care of the things that needed immediate attention and we took care of each other.
In the year since, we have dealt with a plethora of emotions and events. We have gotten through them even though sometimes it’s a fight to do so. I feel like this year has concurrently been the slowest and fastest of my life.
I decided on my birthday on December 26 that I would do a Facebook fundraiser for this wonderful organization. I set a goal of $300 since I am in my 30s. I ended up raising $335! I have some seriously generous and awesome friends.
Shortly after I sent a Facebook message informing the administrator that the fundraiser was in progress and they invited me to write this post. I am truly honored. It is honestly the least I can do to help others who are dealing with this horrible disease.
The only advice I can offer is to take it a day or even a second at a time and to love the person who has cancer and to love those in your caregiving group. Be patient with yourself and your loved one. And have hope even if they end up dying. Have hope that Esophageal Cancer will one day have a cure.”