Chris DeSantis celebrated his 47th birthday on November 3, 2015, marking his 17th birthday since being diagnosed with mesothelioma.
His story began like that of many others’ with mesothelioma; he started experiencing vague symptoms that were difficult to pinpoint. Around Christmastime, at the age of 27, Chris complained of bad colds and sharp pains in his left side. His mother, a registered nurse, instructed him to see his doctor, but the doctor was dismissive of the symptoms. By the next year, he again followed his mother’s advice and asked the doctor insistently for a chest x-ray. The doctor was hesitant, but agreed.
Shortly after the x-ray, Chris received a call at work advising him to see a pulmonologist. He was sent for an MRI, which revealed a thickening around his left lung. The doctor said it looked suspicious and suggested a follow-up scan in six months. Chris was troubled by the idea of waiting this long, as he was in immense pain.
Chris’s mother was upset by the news and decided to call upon some colleagues in the medical profession, and was ultimately told that there was a 50-55% chance that Chris had mesothelioma.
After searching the internet for information about the disease and reviewing treatment centers covered by his insurance, Chris went to a university setting where a biopsy was performed on his left lung. All of the results came back positive for mesothelioma.
A few weeks later, Chris returned for an extrapleural pneumonectomy (EPP), in which he had his left lung and half of his diaphragm removed. The surgery went well, and after spending a few days in intensive care, Chris was moved to a room where he was met by that team that would be responsible for his treatment. This was the first meeting between Chris and Mary Hesdorffer.
Chris began chemotherapy treatment only a few months after his surgery. His doctor gave him the go-ahead to join his mother on a trip they had planned to England to see his grandmother. He returned from England, continued his chemotherapy, and had a PT scan just before Christmas. Upon receiving the results from the scan, the doctor called Chris’s mother with the news that the disease spread to his right lung. He thought it best to let Chris enjoy the holidays without knowing his results.
Come January, Chris went back to his doctor who informed him of the results and told him he had six months to a year to live. Chris, accompanied by his family, was shocked by the news. As he tried to comprehend what he was being told, he could hear his mother crying and see his father trying to keep his composure. Despite the intensity of the moment, Chris then, out of nowhere, asked his doctor for his age. The doctor responded and Chris replied, “Sir, I have all respect for you, but this is the game now. I will outlive you.”
Chris optimistically continued his chemotherapy treatment, but after a while, he became drained. His quality of life was significantly decreased, and it wasn’t long before he simply decided that he had enough.
Treatment stopped. His symptoms continued despite stable disease. It became harder for him to breath in the humidity and cold that came with living in New York, and so he up and moved to Arizona.
After his move and without his frequent trips to treatment, Chris lost contact with Mary Hesdorffer, who had left her position at the university. It was seemingly out of the blue when, one day, she called him up to tell him about her recent involvement with the Mesothelioma Applied Research Foundation.
Mary invited Chris to the Meso Foundation’s annual Intesymposium, encouraging him to connect with others in the community who are also facing mesothelioma. Chris agreed, but struggled emotionally with survivor’s guilt upon meeting those who were not fairing as well as him. It was hard for him to hear stories of those who passed while wondering why he survives.
Nonetheless, Chris, as a very sociable person, soon learned to put his guilt aside and do all he could to help those in the mesothelioma community. Living in Arizona, Chris did not have many opportunities to socialize. He often finds himself stuck at home to deal with his pain, nausea, fatigue, and other symptoms that reduce his quality of life. So, it was no surprise that Chris was honored to have Mary introduce him to the Meso Foundation’s online Facebook support groups, which gave him an outlet to socialize and help others in similar situations.
Getting involved with the organization helped Chris to overcome his survivor’s guilt and begin to enjoy helping others with mesothelioma. It’s hard for him to comprehend that he is one of the longest survivors, but he has come to realize that his story gives hope to the community. He talks with other patients and provides them with advice on how to live with the disease. As Chris says, you can’t forget that you have mesothelioma, but you can’t allow yourself to live with it on your mind 24/7.
Chris also advises patients to be their own advocates. Throughout his experience, he pushed his doctors to do more for him and informed them of every new symptom that he felt along the way. With so many doctors unaware of mesothelioma, it’s important for patients to stand up for themselves.
Through the Meso Foundation, Chris is able to talk to patients about the symptoms that come along with diagnosis and those that never go away, such as anxiety, pain, trouble breathing, etc., and how he deals with them in his daily life. With everything that comes with a mesothelioma diagnosis, Chris’s core advice to patients remains the same: “Just have faith and keep going, and stay positive and stay strong.”
