Optimizing Cancer Support
Many years ago, Greg was diagnosed with hepatitis C. His doctor told him it was asymptomatic, so he decided not to treat him, stating that his health would decline with the drugs that were available at that time. During the years Greg had hepatitis C, his doctor did not conduct any ongoing scans or surveillance. When a new class of drugs came out, Greg decided he wanted to treat his disease and sought out a new doctor. The new doctor's hepatitis C treatment for Greg was successful. Afterward, the doctor did a routine scan and found two lesions on Greg's liver and diagnosed him with hepatocellular carcinoma (HCC).
Greg and Sarah were shocked because Greg was a healthy guy. Sarah wanted Greg to focus on healing and living his life, so she took it upon herself to get as educated as possible. Sarah read up on clinical trials and medical journals, everything she could get her hands on. During this time, she met Andrea and the Blue Faery organization, which provided support, patient education in layman's terms, and the hope that you can live with this diagnosis for years.
Initially, Greg was eligible for a transplant, which gave him the best odds of survival. The liver transplant process is very extensive. The healthcare team has to ensure whomever they provide a liver for is not only going to be able to survive the surgery but also the post-treatment care. So Greg had an electrocardiogram, cardiac catheterization, dental work, and a psychological exam. He was listed in San Francisco, but the wait time was over a year. During this waiting period, Greg had several treatments to stop the tumors' growth, including chemoembolization and the Y-90 radiation treatment. Due to the long wait time, Sarah and Greg went to New Orleans, where he was also listed. Registering at two or more transplant centers is called "multiple listing."
What Sarah found interesting about the transplant process is that you have to be healthy enough to pass extensive medical and psychological checks, survive the surgery, and then survive living with a transplanted organ. But you also have to be sick enough to be eligible. When Greg became number one on the transplant list in New Orleans, Sarah and Greg moved there. Sarah's sister and her husband joined them for support. Greg got called into the hospital four times during their time in New Orleans. Unfortunately, the harvested organs were not the right fit for Greg. While going through a scan, the healthcare team discovered that his tumors had grown out of that center's transplant criteria, and he was delisted. It was the lowest point in Greg's treatment journey.
Greg and Sarah returned home to San Francisco, where Greg was still listed. California has different transplant criteria. Greg's doctor was dedicated to doing whatever she could to ensure that he could get a liver in San Francisco. To remain on the California transplant list, Greg underwent additional treatments to ensure the tumors would shrink. Unfortunately, they grew out of criteria (again), and he was delisted from San Francisco in February of 2018. After he was removed from the transplant list, Greg and Sarah went to UCSF and enrolled in a clinical trial program. Greg was eligible for the immunotherapy trial and, for several months, responded to that treatment. Then, the drugs stopped working. At that point, Greg got started on his bucket list.
Greg was a surfer who always wanted a Woody Wagon. He bought a 1947 Woody Wagon, a ginormous vehicle, and went to Hawaii with Sarah. Greg was also an artist who built an artist studio in the backyard. He lived life to the fullest and celebrated every day. When he was first diagnosed, Greg told his doctor he wanted to make it to 70, and he did. He passed away in the hospital six days after his 70th birthday.
Greg's journey after his diagnosis was overwhelming and terrifying. However, Greg and Sarah were fortunate to find some mentors who had also been on the transplant journey. Two gentlemen shared their stories and gave them advice and support. Greg and Sarah were in Hawaii when they learned that Bob, one of the gentlemen, had passed away. After hearing that news, Greg had the word "cancer" tattooed on his middle finger. The tattoo symbolizes Greg's sense of humor and character.
