By Sara Bondell - May 07, 2019
To Brenda Nelson’s family, she’s always been "Fun Aunt B."
She is the middle of five children, a fighter from day one after she was born two months early.
She’s the first to volunteer to hit a theme park with her nieces and nephews. Not even a bout with colon cancer in 1999 could slow her down.
But in 2015, Nelson began having an aching, pulling pain under her liver. Three years went by without a diagnosis, until last April when her belly pain got so bad it sent her to the emergency room. A CT scan found the sneaky culprit: a lesion doctors diagnosed as a rare type of cancer called leiomyosarcoma.
Nelson would once again have to fight.
RAREST OF THE RARE
A sarcoma is a type of cancer that starts in tissues like bone or muscle, and soft tissue sarcomas can develop in soft tissues like fat, muscles, nerves and blood vessels. About 13,000 new soft tissue sarcomas will be diagnosed in 2019 and only 5 to 10 percent of those will be leiomyosarcoma.
Nelson’s tumor was located inside the vena cava, making it even rarer. The inferior vena cava is the largest vein in the body, carrying deoxygenated blood from the lower half of the body back up to the heart. Nelson’s 6-centimeter tumor was shoved inside the only 2-centimeterwide vein, eventually growing outside the wall of the vessel and into her liver. The tumor was preventing blood flow from the lower body to the heart and would soon be blocking all blood flow out of the liver into the heart. With this main vein clogged, Nelson’s smaller veins had to do the heavy lifting, and more blood was flowing through them than they were built for. That caused restricted blood flow, explaining why Nelson’s feet were turning blue.
If the tumor wasn’t removed, Nelson’s liver could fail or the tumor would grow so large it could stop her heart. Surgery was her only option, but it would be risky.
Nelson was only 58 years old — not even a grandmother yet — and she knew she had a lot of life left to live. After chemotherapy shrunk the tumor enough for it to be operable, Nelson decided to undergo the complicated surgery. "When the doctor explained to me how serious the surgery was, it was still better than the alternative," said Nelson. "Without surgery, I had only about a year or less left to live."
She decided to stay positive and put all her trust in her doctor, Ricardo Gonzalez, M.D., Moffitt Cancer Center’s chief of Surgery and chair of the Sarcoma Department.
Gonzalez began the massive preparations for a surgery of this magnitude. The procedure has been done only a fraction of times across the United States, and this would be the first time in the Tampa Bay area. "In this line of work, sometimes you have to think outside the box and oftentimes design a surgery around the problem, and that’s what we had to do here," said Gonzalez.
Gonzalez called in the help of Tampa General Hospital transplant surgeons Angel Alsina and Julio Sokolich, thoracic surgeon Robert Hooker, and a surgical critical care team led by trauma surgeon David Ciesla. Nelson would need extensive postoperative care in an intensive care unit, so the surgery needed to be performed at Tampa General.
Nelson would be placed on bypass during the surgery, while the surgical team separated her liver from part of its blood supply and cooled her liver. They would then remove the tumor and a portion of her liver before reconstructing her vena cava using a synthetic graft they would suture to her heart.
The medical team laid out the plan for surgery and created multiple backup plans if things didn’t go as expected. Gonzalez met with Nelson and her family several times before the surgery to make sure they understood the procedure and the risks. “Dr. Gonzalez promised me he wouldn’t leave me and he would get me through to the end,” Nelson said. "I had complete faith in him. My whole family wanted me to go up to New York for the surgery, but when they met Dr. Gonzalez, they saw what we saw and were at ease."
TWENTY HOURS IN THE OR
You can drive from Tampa to New York City in just shy of 17 hours. To complete an Ironman triathlon — a 2.4-mile swim, 112-mile bike ride and 26.2-mile run — it will take the average triathlete about 13 hours. You can binge watch all of the "Harry Potter" movies in 19 hours and 39 minutes.
Nelson was in the operating room for 20 hours over two days.
It’s an intense feeling to know someone’s life is (literally) in your hands, and Gonzalez says he took a few days to mentally prepare for the surgery that was scheduled for Oct. 8, 2018.
He and the transplant team had designed the procedure, thought through different complications that could arise and devised alternative plans. Those plans came into play a few hours into the surgery, when the surgical team realized they couldn’t save the veins they initially wanted to connect the reconstructed vena cava to. They would have to move forward with Plan B, which meant a more challenging approach to the reconstruction.
Another challenge the surgeons faced was blood loss. Because Nelson was on the operating table for so long, she lost a lot of blood and needed abdominal packing, a life-saving technique where doctors pack the abdomen with gauze to apply pressure to slow or stop bleeding. It was successful, but required a second surgery the following day to remove the gauze.
After the second surgery, Nelson spent almost the next two weeks in the intensive care unit — half of that on a ventilator. It was the first time she had been away from her husband since the high school sweethearts met as teens. But she wasn’t alone; a team of critical care doctors and nurses watched Nelson around the clock.
"There was a lot going on during that time,” recalled Gonzalez. “You have to watch carefully because even the smallest things could mean something bad. Fortunately, she was very stable through most of it.”
That doesn’t mean there weren’t a few scares. At one point the ICU team had to shock Nelson’s heart because it had started beating irregularly.
Nelson doesn’t recall much during that time, except one foggy memory: “I remember my family speaking to me and telling me, ‘They got it all.’ ” Hearing those four words put Nelson at ease.
What put Gonzalez at ease was the amazing team of people working on Nelson’s case. “How many people it takes to get someone through this, through the entire cancer journey, is truly inspiring,” he said. “And all they want is to get that person better.” Nelson’s team was so large, Gonzalez can’t even pinpoint the exact number of individuals who cared for her, but says they all deserve recognition.
Nelson’s own team — her family and friends who called themselves the "B Team" — also rallied around her during her hospital stay. She received dozens of get-well cards and was the focus of multiple prayer groups. And as promised, Gonzalez was there for her the entire time, speaking to Nelson’s husband on a daily basis.
"I told him, ‘I will tell you when I am worried,’ " said Gonzalez. He never had to.
Almost a month later, Nelson was finally ready to go home.
RETURN OF AUNT B
Nelson’s husband expected months and months of recovery, but she was back walking and driving before the holidays. Looking at her postoperative scans, she still can’t believe what the surgical team was able to accomplish. Her cancer and the pain the tumor brought with it are gone, and with proper blood flow restored, her feet no longer turn blue.
“My faith and love for my family and my trust in Dr. Gonzalez got me through,” said Nelson.
Nelson spent Christmas with her extended family and rang in the new year with a pledge to become the healthiest version of herself. She has plans to travel this year and return to the theme parks with her nieces and nephews.
“Fun Aunt B,” she says is here to stay.