Earlier this summer, Cari Hug was out on the river, and no matter the strength of the rapids, she felt free and rather courageous.
She had survived 18 years of cancer — misdiagnoses, surgeries, infusions, pills, doctors shaking their heads and saying that there was nothing left in their medicine chests. She had a new mantra these days. Don’t give up. Keep going. One breath. One step. Get out of bed and enjoy life.
She was the first to climb onto the rock. Other cancer patients lined up behind her ready to jump into the cool summer waters of the Salmon River. Laughter echoed off the mountains. For a moment, or maybe for the five days of this rafting adventure, they could forget their challenges and jump into unknown waters, for fun. It was her turn. The water cracked beneath her. Or was it her body?
Her adventure ended at the hospital on the last day of the trip. She held her breath for an X-ray. The 50-year old had fractured six ribs.
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The broken ribs serve as a metaphor for her mantra. Her story of cancer and survival suggests that the body and mind can endure even the most arduous waters. She gets out of bed. She steps (a bit slower these rib-healing days). And she enjoys the moments between cancer where she can live and love.
A tragic medical call
In 1997, Cari Hug was 31 years old and in the final months of pregnancy with the last of her four children when doctors noticed that her liver enzymes were sky high. Her obstetrician admitted her to the hospital. The tests came back inconclusive. Maybe it was an immune disease like lupus, they told her. Maybe not. They delivered the baby and told the mother that they would keep an eye on her. Three months later, a gastroenterologist diagnosed ulcerative colitis. Things kept getting worse, and a liver biopsy that same year suggested a disease of the bile ducts — primary sclerosing cholangitis (PSC) that causes inflammation and fibrosis of the bile ducts in and around the liver.
The next year, she was thinking about the fixings for Thanksgiving dinner when she noticed a large lump on her left breast. She was living in Emmett and her family doctor referred her for a mammogram and a biopsy of the lump. Weeks passed before she was sitting in the office of a surgeon. Boxes were piled high — he was moving his office from Oregon to Idaho — and she got a creepy feeling about the guy. He was taking notes on a paper towel. He looked at the results from the mammogram and put his hand on the lump in her breast. It feels like a scar tissue, he said, and I think we should just watch it.
Two weeks later, she was in pain and returned to the surgeon. Instead of a quick needle biopsy, he took her into the operating suite and removed a large chunk of tissue that he would later say looked like chicken fat. Findings from the tissue were sent for analysis and came back positive for cancer. The surgeon recommended a complete removal of the breast, but an oncologist thought the cancerous tissue could be scooped out with a lumpectomy to spare the breast. They agreed on the less invasive procedure, but she awoke to a botched surgery. Her nipple was now located further north on her chest, facing upwards towards her chin. The surgeon would later confess that he’d only had one other breast cancer patient in his surgical career. “And that was 30 years ago,” Hug said.
A week later, she was having some problems at the site of the surgery. She knew that she wasn’t going back to that surgeon, and her nurse practitioner recommended another one at St. Lukes Medical Center in Boise. Dr. Mark Szentes was the right mix of surgical prowess and compassion. He was getting ready for Christmas when he invited the young woman into his office. There were two wrapped gifts on his desk. He would take them home that night. The office had cleared out hours earlier to get ready for Christmas Eve. He looked at the scan of her breast and saw some calcifications that didn’t look good. He shook his head. He was gentle in the delivery of bad news. You should have had a mastectomy, he said.
He recommended that she have a round of chemotherapy before heading back into surgery. She began chemotherapy in January 1999. There was an infusion every three weeks for three months. Then, with the thaw of winter, Szentes took her into surgery. She then had another three months of chemotherapy and six weeks of radiation.
A year later she had a chemotherapy port removed and readied herself for reconstruction. Szentes was part of the surgical team and decided it would be best to remove her right breast, too. They knew that it was an aggressive cancer. Dr. Susan Hegstad, a plastic surgeon who is also affiliated with St. Lukes, completed the reconstruction.
The next year was a good one for Hug. Her children were growing and thriving. But in 2001, she began feeling a sharp pain in her back. It wouldn’t let up. A nuclear body scan came back clean. She was at her one-year check up with Dr. Sarah Bolander, her radiologist, and told her about the unrelenting lower back pain. The radiologist immediately ordered an MRI, which revealed a few abnormal spots on the lumbar region of her spine, as well as a compression fracture. The cancer was back, and this time it had spread into her bone.
Another six weeks of radiation. Hug thought this would be it. Six months later, her back locked up and she couldn’t move for a few seconds. Another MRI. Another batch of bad news. The cancer was above and below the L3 area of her spine. More radiation. Another round of chemotherapy. By the time she had her last infusion, Hug was literally hugging the walls around her. She could barely walk without support.
Never catching a break
In 1976, scientists from the University of California, San Francisco, discovered that there was a family of genes that can turn a normal cell into a cancer cell. That same year, just down the road from UCSF, a biotech company called Genentech was formed. One of Genentech’s founders is biochemist Herbert Boyer, who was ahead of the game in recombinant DNA technology. This was the beginning of the genetic revolution.
In 1985, scientists at the National Institutes of Health showed that the HER2 gene, along with another gene called neu, was frequently amplified in human breast tumors. The HER2 gene makes a protein that more than nudges normal cells into growing abnormally. It kicks them into gear. Genentech developed an antibody that targets the immune system to suppress the growth of HER2 that was commonly seen in 25 percent of breast cancer patients. By the mid-1990s, the company had taken trastuzumad, which was later approved by the Food and Drug Administration and called Herceptin, into the first two phases of drug testing: first for safety and then a study in a small sample of HER2-positive breast cancer patients. By March 1997, around the same time Hug was having symptoms that would eventually be diagnosed as breast cancer, the company ended its enrollment in a larger randomized study of its anti-HER2 antibody.
Results of the larger study were so impressive that the FDA agreed to fast track the drug. There were no other drugs that worked for this aggressive form of breast cancer. It was approved in the fall of 1998.
Five years later, in 2002, Hug’s oncologist recommended Herceptin. Genetic tests showed that the tumor tissue was HER2 positive. It wasn’t cheap — about $9,000 per treatment — but the studies on survival were convincing enough for her to try it. Insurance from her job at Micron would pay for it. But a year later, her compromised health led her to apply for disability. She left Micron, but her government disability was paying for the drug, delivered by infusion, every three weeks.
Nine years into her treatment, Hug noticed she’d gained a lot of weight. It was the summer of 2011 and she went in for her routine infusion. The nurse had her hooked up to a heart monitor and was distracted for a few minutes. When she returned, she noticed that Hug’s heart output was very weak.
“When was your last MUGA scan?” the nurse asked.
“What’s a MUGA scan?” Hug replied.
By 1998, the first hints that Herceptin treatment could result in heart problems emerged in the study data. Some patients had developed reduced heart function and even congestive heart failure. In 2005, Genentech sent a letter to health care providers laying out the updated cardiotoxicity findings. It was recommended that doctors watch for heart problems in patients on Herceptin.
Hug was never monitored for heart trouble.
The MUGA scan is a test that includes a radioactive tracer and a camera that takes photos of the heart as it pumps blood. It measures the function of the heart with every beat. The scan showed that Hug’s heart was pumping at around 49 percent.
She could now add cardiomyopathy to her medical history. It is a direct effect of the Herceptin.
She found a cardiologist who added even more medications to her life. The goal was to get her heart output up to 75 percent of normal. The doctors were watching the cancer and now her heart. She’d also been taking medication to strengthen her bones and in 2008 she learned that the pill — which worked wonders on her bone strength, she said — was eating away at her jaw bone. The osteonecrosis was treated with 40 daily doses of oxygen in a hyperbaric chamber. Doctors stopped the bone-strengthening medication immediately.
But Herceptin was keeping her alive and she chose to continue taking it. Two years later, in 2013, a friend noticed that she seemed to be pushing on her chest a lot. A few days later, she was on a walk and got totally winded after seven minutes. She saw her doctor, who thought she might benefit from a diuretic. She had gained a lot of weight. One pill, and four hours later Hug had lost nine pounds.
“I was close to congestive heart failure,” she said.
Today, her heart is at 60 percent output. It ticks at 50 beats a minute. Her kids are grown and many of them are having kids of their own. She lives in a tiny cabin in Cambridge. She volunteers her time to help other cancer patients. She finally feels well enough to start having fun. She heard about the lottery for the rafting trip and put her name. She won. She put her mantra into action. She floated the river. She jumped. She broke six of the 24 ribs in the chest. In spite of the pain, she had fun. She did it. And she will get up tomorrow and do it again.
“Every day is a battle to get out of bed. Some days are more mental than physical. I am just tired,” said Hug. “But I have my kids and now my grandbabies. I have isolated myself for too long. I’ve had cancer so long that I don’t know who I am without cancer. I want to get out more now and live.”
Jamie Talan is a science writer and editor-in-chief at an art and literary journal at the Hofstra Northwell School of Medicine in New York, where she is a clinical assistant professor of science education. She lives in Boise.