Prioritizing Quality of Life
In the 1990s, Jimmy found out he had cirrhosis caused by hepatitis C. Jimmy did not have any symptoms at the time, and the doctor never recommended taking any additional tests or ongoing surveillance. In December 2020, he started having stomach pain that went up to his shoulder. Sharon took him to the emergency room, and they discovered that he had pancreatitis. Jimmy had an ultrasound exam followed by a CT scan. The CT scan showed a lesion on Jimmy's liver. Consequently, the ER doctor was concerned that Jimmy's cirrhosis might have advanced into cancer, so he recommended seeing a gastroenterologist (GI).
Since it was a week before Christmas, it was challenging to find a specialist. Even though the ER doctor sent referrals for a GI, Jimmy's medical diagnosis was not considered an emergency. Therefore, there were significant delays in getting an appointment scheduled. In the meantime, Jimmy went back to the emergency room multiple times. His primary care doctor was jumping through hoops trying to get something done, but their insurance would not approve an MRI, a test that would confirm a diagnosis of cancer.
Three months later, Jimmy and Sharon finally saw a GI. An MRI confirmed that Jimmy had hepatocellular carcinoma (HCC). He had a tumor in his liver along with some satellite lesions. However, Jimmy and Sharon trusted their GI doctor, who led Jimmy's treatment.
The GI offered to get Jimmy on the transplant list. However, Jimmy did not want to take a liver from somebody who was younger or had kids to raise. He said he could not live with himself, knowing that he was alive and somebody else hadn't had a chance to live. So, the oncologist prescribed Lenvima to Jimmy for months. When it no longer worked, he changed the prescription to Opdivo. But Jimmy's health kept declining. His feet and legs were swollen, and his liver enzyme levels were too high. Although Jimmy's tumor markers were going down, his GI doctor said that the medication was probably shrinking the tumor but also destroying what little was left of his liver.
The GI stated that if Jimmy did not stop the treatment, it was going to kill him. When Sharon and Jimmy asked the doctor what he would do, he recommended hospice. He told Jimmy that he could always choose to leave hospice and return to treatment. So, Jimmy and Sharon prayed and discussed the options. The conversation was difficult because when most people hear the term hospice, they think they are going to die tomorrow. Family members did not understand their decision to stop treatment and seek hospice care. Some of them misinterpreted going into hospice as quitting treatment. (Even though you can leave hospice anytime to resume treatment.) When Jimmy met the hospice team, they reassured him by saying that their main focus was on improving his quality of life. Before his hospice care, Jimmy's health was terrible, and he barely could do anything. Hospice care helped him have a wonderful last year of his life.
