John in January 2009
Contributed by Suzanne Elliot, sister.
John was only 40 years old when he was diagnosed with colon cancer in August 2005.
That year should have been a year of great happiness, as he and his wife, Gina, had a baby girl, Sophia, only 7 months prior to his diagnosis.
John was a man of great faith whose strength was infectious, heart was rich, and was wise well before the age that wisdom is evident. He was a balanced person who, even through his own battle, showed such compassion for others. Even his doctors considered him not only a patient, but a friend – his goodness radiated! He was a great father, husband, son, brother, cousin, nephew, friend and colleague. He knew that the truest greatness in life was family! He loved spending time with his big family. He treasured his wife, Gina of 10 years, and his daughter Sophia.
In April 2005, John had noticed some change in bowel pattern – felt the urge to go, but was unable to. At first, John was informed that he might have hemorrhoids. His symptoms were subtle, but continued. In July 2005, it was noticed that John lost 20 pounds in a matter of weeks and he had some dull abdominal pain.
When John was finally able to get in for a colonoscopy with a gastroenterologist, a blockage was noticed. That same day, John was sent to University of Pennsylvania to have a further consultation with another GI doctor. The GI doctor at University of Pennsylvania scheduled a CAT scan and blood test immediately. It was determined that John had a tumor in his colon. Subsequently, John was scheduled for surgery, only weeks after diagnosis, to remove the tumor found in his colon. During surgery, it was noticed that the tumor was aggressive and there was liver metastasis (Stage IV) involved. In addition, the tumor was “hugging” the hepatic artery.
Even as John’s life was impacted in a big way, you could never tell the toll that this disease took on his mind and body. He had 60 rounds of chemotherapy, subsequent surgeries, and RFA. John’s colon cancer therapy (chemo) resulted in neuropathy, hair loss, skin peeling, dermatitis, nausea, abdominal cramping, weakness, and fatigue for him.
The one thing that was missing, especially in the beginning of John’s care, was a person to coordinate care or a “Patient Advocate”. It is hard to ensure that all the doctors are talking to each other when you have to include many specialists in a patients’ care. When the disease impacts another part of the body (disease progression) another specialist gets involved. It is not evident to the patient that everyone is discussing his or her care. A patient with Cancer is too sick to invest effort to ensure they ask the right questions at a doctor’s visit. Increased communication amongst the doctors and perhaps a brief description, shared with the patient, of what was being discussed among the doctors regarding his or her care would have been helpful. In addition, the health insurance – what they’ll cover and what they won’t. There is a definite need for patient advocates. Also at times, John didn’t gain much hope after interactions with some oncologists, as their demeanor was condescending and focused only on the limited time that Stage IV represented. These types of interactions were not helpful for John to have a good feeling after a visit.
The things that helped John to cope were talking to others that had successful experiences and the physicians that took the time to call John at home throughout his battle and most especial when he was too ill to come into the office. That meant the world to John, as it was a personal touch – he wasn’t a number – he was a person.
The best part of John’s experience was hospice and the conversations he had with his Parish Clergy. They were very delicate with him and gave John “permission” to go, thereby, contributing to his peaceful death. Hospice made him feel comfortable and were very supportive and the priests helped him spiritually.
Although a man of few words, he was not silent about things that mattered. After his three-year battle with colon cancer, he passed away peacefully in August 2008 at the age of 43. His wife, daughter, mother, siblings, and extended family and friends miss him dearly. The cancer may have taken his life, but it can’t take his spirit and legacy. He continues to live through all of us, differently.