Jay Alexander was a very intelligent, strong, athletic young man with everything going for him in his life. At age 20, he was in his junior year at Arkansas Tech University, studying to be a mechanical engineer. He enjoyed watersports, hunting, backpacking, football, and was very active with a lot of friends. He was working full-time in the summer of 2011 as a mechanical engineer intern and had his own apartment.
His health had always been very good other than a few injuries from wakeboarding, a knee injury, foot injury, and a few minor injuries during high school football. He did have an umbilical hernia repair in December of 2007. They put a small piece of mesh in. Over the next couple years, he had continued drainage from his bellybutton because his body rejected the mesh. So in March of 2011, he underwent laparoscopic surgery to have the mesh removed. The doctor did say it was more involved than he expected, but he recovered well from this procedure and returned to his normal, active life.
Approximately September 1, 2011, he came down with cold symptoms and diarrhea. The cold symptoms went away in a couple days, but the diarrhea continued off and on. Since he was not living with us all the time, I didn’t always know how bad it was. He tried various things to make it better, but it would come back. He was busy with school and working.
On September 26, he went to see a family doctor, who prescribed Lomotil, put him on a BRAT diet (bananas, rice, applesauce, and toast), and said to follow up in a week if it didn’t improve. Jay told me this doctor noticed a lump, but thought it was a muscle spasm. He thought the diarrhea could be from stress. This was the first year Jay was trying to work and attend college
Jay noticed something under his ribcage while taking a bath during this week. When he went back for a follow-up on October 3, they ordered a CT scan. This revealed a 12 by 14 centimeter mass. He saw an oncologist on October 5 and was told it looked like fibrolamellar hepatocellular carcinoma, but he wanted him to see a liver specialist.
Beginning around October 8, Jay was noticeably bloated and having pain. He was prescribed hydrocodone. He didn’t return to school after October 7.
On October 14, we saw Dr. Winston Dunn, a liver specialist at KU Med Center in Kansas City, which is 3 ½ hours from where we live. We chose this center because they have a Liver Center team that specializes in liver diseases, surgeries, etc. He confirmed the diagnosis. We were told it was a slow-growing tumor, that we should control his pain better, deal with the bloating, and plan for the surgery. He told us that the surgery was not a cure, because it would come back, but he would have years to live. This was a Friday. He prescribed two diuretics for the bloating and different pain medication, OxyContin.
Jay’s pain over this weekend kept getting worse. The new pain medication didn’t seem to work. The hydrocodone seemed to work the best, but we had to be sure he didn’t get too much Tylenol, so he would take OxyContin long-acting and sometimes oxycodone along with it if needed. By this time, he is staying on the couch constantly, and even riding in a vehicle was painful for him.
On Monday, October 17, the team of doctors reviewed his CT from October 3 and decided they needed another one performed at their center. We made the trip to Kansas City again for a CT on October 19. By this time, he is in severe pain and very bloated. They have suggested a low-salt diet for the bloating. His appetite was already down, and now to try to limit salt intake made it even more difficult.
We headed back to Kansas City on Monday, October 24, for an appointment with the surgeon and also Dr. Dunn. However, when we got there, we only saw Dr. Dunn. The team had reviewed his films that morning and decided it was not operable. The CT showed the main mass as 16.5 x 16 x 12 cm., along with numerous other nodules. Dr. Dunn thought that the main tumor had possibly burst at some point, causing it to spread. He told us Jay had months to live and the only thing they could prescribe was Nexavar, which may extend his life by a month. We asked about relieving the bloating, which was extreme by this time. The only thing he suggested was a tube that would be left in, but he said that they wouldn’t really do that until we made the switch to comfort care because these drains get infected sooner or later.
We wanted a second opinion. However, we knew by now the best places were MD Anderson and Sloan-Kettering in New York. Jay was not really well enough to travel that far, but we were considering it. In the meantime, we sent his scans and information to both centers to see if they would review it and give us an opinion whether it would be worth making the trip.
On Wednesday, October 26, I received a call from Dr. Kaseb’s physician’s assistant from MD Anderson. She said Dr. Kaseb would be willing to do a phone consultation with a local oncologist regarding treatment options. She mentioned 5FU and Interferon. She also mentioned that the bloating could be relieved by draining, paracentesis. This was the first we knew this could be done.
On Friday, October 28, we saw a local oncologist, Dr. Travis Riggs. He performed the paracentesis and drained 5 liters of fluid from Jay’s abdomen. Later that day, he also had a port placed so that we could start the chemotherapy the following week. Draining the fluid relieved a lot of his pain and he had a pretty good weekend. He was able to get outside a little and had friends come over to visit with him.
There were some issues with the port, so on Monday, October 31, he only received the Interferon shot. On Tuesday, they were considering whether he needed to have a biopsy to confirm the diagnosis, but later that day, they found out the pathologist had found enough cells in the fluid from the paracentesis to confirm it.
On Wednesday, November 2, they started the 5FU through a pump that would stay attached and infuse it on a set schedule. Wednesday night overnight, he had severe pain and was up a lot.
He didn’t want to eat Thursday morning and started to be groggy and hard to wake up. We took him in to the oncologist’s office. By now, he was barely able to respond to anything we said and wouldn’t wake up very much. They drained some more fluid at the hospital and sent us back home. However, he became combative, we thought because of pain. He hadn’t had pain medication since the morning. We finally had to call an ambulance to take him to the hospital. They had to sedate him to keep him calm, and he never recovered.
Jay passed away on Friday afternoon, November 4, 2011, 32 days after the tumor was found and only two months after symptoms were noticed.
This deadly disease leaves us with so many questions, questions about what caused it, whether we missed any symptoms, whether we took the right steps along the way, whether the chemotherapy was the right thing to do, etc. There is no answer to these what-if questions. However, I am thankful that he didn’t have to suffer long with it.
We love you, Jay!!
By: Sheila Alexander, Jay’s mom