January 2017. I will begin to chronicle my sister”s health battle. It has been a roller coaster of emotions so far.
Around the end of December 2016 Doris went to her primary care physician to begin testing for the source of her water retention and swelling. She had an MRI which showed spots on the liver. Subsequently a biopsy was ordered. Here’s where the roller coaster ride ascends. We had all been on an emotional low, then she had the biopsy. That afternoon, Doris called us to say the biopsy showed no cancer. We aren’t sure if someone called and told her this in error or if it was a medically induced dream. As she was prescribed medicine to relax her for the procedure.
She was scheduled for a procedure we thought was going to take care of the spots on her liver, when actually it was a procedure to cord off polyps in her esophagus. We were quite confused when the doctor went over the procedure.
The doctor came into the room post op and began telling her how they were going to take care of her cancer and if it turned out to be HCC, she would be booted to the top of the donor list because of the type of cancer and urgency. He said a lot, but we were all so stunned we didn’t ask questions. Brenda and I could only listen in disbelief. Totally blindsided.
After getting Doris home and settled, I called her doctor’s office to get a handle on what had just happened. The nurse told me she had cirrhosis of the liver and hepatic cancer. She said the cancer specialist would call that afternoon to make an appointment for a consultation. We all were descending on the roller coaster, and frankly pretty scared.
I ended up having to call the Piedmont doctor that was supposed to call. I made her an appointment for January 25th. Which was the first available date. I thought I was making an appointment with an oncologist. But realized it was Piedmont Transplant Institute, when my grandson was playing with the phone and redialed. I heard someone answer Piedmont Transplant Center. I was told that for Hepatic cancer, a liver transplant is the cure.
So at the crack of dawn on January 25th, Doris and her entourage headed up to the Piedmont Transplant Center, at Piedmont Atlanta. Her sisters, her granddaughter, Jesse, and Daughter, Sela crowded around the doctor eager to grasp knowledge of this cancer in order to make informed decisions that will set her on a path to recovery.
What we learned was, we havent learned anything yet. Yes, this doctor wasn’t even comfortable enough with the information he had to give us the dreaded “C” diagnosis. Not yet, anyway. He would need the slides from the biopsy. So he will send in a request to her doctor in Carrollton, then have one of their pathologist read the slides. Then the team would meet on Friday, February 3rd, and discuss her case, make a diagnosis, and determine what treatment they will recommend.
He discussed a couple of methods of treatment that have had a high success rate. One is Oblation of the tumors. Described as going through the stomach to the liver and burning them. Another is going in through the groin with a catheter thread to the liver, and injecting chemo particles. This method will cause nausea. We were encouraged to hear this, as before talking to this doctor, we thought a transplant was the only treatment. This doctor was not as optimistic about her chances on the donor list as the doctor who did her polyp surgery. He said there are so many people needing livers, and not as many donors. And there are many hoops to jump through to prove you would take care of the organ. We also learned she has signs of heart disease. This was surprising as she had never been told this before. And it could be another strike against getting placed on the donor list. We asked about the possibility of donating a piece of liver, since they regenerate. This isn’t something they do there, although they may in the future.
So we are waiting at this point. But determined to help get her prepared for this battle.
Friday, January 27th, Doris had to be taken by ambulance to Tanner Hospital in Carrollton. Jesse had called to check on her that day and she was disoriented. She was scared she might be having a stroke. She felt as if she was in a drunken state.
The on call ER doctor ordered some blood work, a CT scan and urinalysis. This took around three hours. We were relieved that she wasn’t having a stroke, but concerned that her liver was not able to process drugs that were prescribed. Her primary care doctor prescribed xanax to ease her anxiety. but due to the decreased liver function the pills were not processed. They built up in her system. She was under the influence of this drug for days. The doctor pulled us aside and told us she should be monitored over the weekend. Someone should be with her. That we did. It was tough to shake the effects of that medicine, but by Sunday morning she was beginning to find her way out of the fog. She has not been eating well. She tolerates Ensure and Frog Spit (a lemon lime sherbet push up) She still has issues with the ulcers left by the polyps that were corded. But seems she just can’t catch a break. Her phone rang after ten one night last week startling her. In her efforts to get to the phone quickly she got tangled in the covers and fell out of bed cracking her eye on the night table. Her eye looked awful. Then began to cake with matter. This was the eye that had been operated on for macular degeneration. Then later had to be restitched So first thing Monday we called for an appointment with her eye doctor. Her appointment was Wednesday. She had to endure a shot of antibiotics directly in this eye with no numbing. And was scheduled to come in for two more. This is very serious. She completed treatment for eyes and we were hopeful her health issues would improve,
She still needed to address her liver issue, but was resolute in her decision to go to her primary care doctor locally, She refused to jump through the hoops necessary to be placed on doner list,
Doris decided she did not want to go through any more appointments to any specialized Doctors. She apparently told her primary care doctor she understood her situation, but only wanted to deal with her symptoms, She accepted her diagnosis and just wanted to live out what time she had without being in and out of doctor’s offices
So the treatment was a diuretic taken via injection twice as week, This helped alleviate the swelling.
We didn’t realize just how sick she was, But I think she knew,
It is January 2018, We, the sisters and our spouses, took Doris out for her Birthday. It was two days from her actual birthday, We did not know this would be the last time. The Friday she turned 67 was spent at Piedmont ER, She was very congested and had a backache, They checked her blood, x-rayed her chest, did an EKG, The diagnosis was back spasms, blood was fine, and heart looked good, so she was sent home with a muscle relaxer.
However by the following Wednesday she was in excruciating pan with her back, while insisting she was fine otherwise, She was so mad when they found a blood infection, She still wanted to ignore that, get her back fixed, and go home. You see they had found a couple fractured disc from the CT scan that they did not catch the previous Friday. We don’t know how she fractured them. But with osteoporosis it is easy to fracture back by even something as simple as coughing or turning over in bed. The treatment for the fractured disc was to inject some sort of cement that would mend it. They mentioned doing this procedure but of course they had to do all the other test first. She had the blood infection and pneumonia. Her kidneys begin to fail and upon all that she had her damaged liver. There was just too much going on to save her. When she aspirated and got more fluid in the lungs her prognosis was bleak. She at first was in a drug-induced coma but even when the sedatives were tapered off she remained in a coma from which she never gained consciousness.
The year following her initial diagnosis was an eventful one. We got together every chance we could. We had our usual family gatherings at holidays, and squeezed in a road trip or two. One of her favorites was our game nights. We also played bingo with Doris and Donnie at the VFW. She was very stoic and did not let on when she was hurting.
We all would give anything just to have had one more conversation with her. And I know, from a personal standpoint, I was not ready to let her go.