Season for Caring: Rivera family, in cancer battle, looks for relief
Ashley Rivera has stage four breast cancer and a brain tumor. The family also has children with complex medical conditions.
Nicole Villalpando and Mikala Compton, Austin American-Statesman
In summer 2015, Joy Brooks threw a "Kick the Bucket" party with all her friends and family at her neighborhood park on Lake Buchanan.
"It was sad, but lovely," Brooks says. "I was so grateful to see all those smiling faces."
Her husband, Kevin, cooked 12 racks of ribs and a brisket. They decorated with buckets of daisies because she would soon be "pushing up daisies." They had a skeleton piata. People swam and waterskied in the lake.
By the time of the party, though, she was too sick to eat that barbecue. She was receiving hospice care and was starting to give away such things as jewelry and other special items.
Brooks at age 58 had been diagnosed with a rare cancer called pseudomyxoma peritonei, which started in her appendix beforespreading to an ovary and thenthroughout the peritoneum, the lining that covers the abdomen walland all its organs.
In June 2015, she was told her tumors had grown too large and too spread out to remove. She entered hospice care.
Then her daughters did an internet search for treatment options and found Dr. Rebecca Wiatrek, asurgical oncologistwith Texas Oncology Surgical Specialists in Austin, and learned of a possible treatment. Hyperthermic intraperitoneal chemotherapy washes the abdomen with a heated chemotherapy after as much of the cancer is scraped out as possible.
The need for this kind of treatment is growing, and Texas Oncology has hired a second specialist to dohyperthermic intraperitoneal chemotherapy.
"We are developing a program here where we can become a referral center for this,"Wiatrek says. "That doesn't happen in a city this size."
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The treatment is incredibly labor intensive.Wiatrek has to get rid of as much of the cancer as she can by first removing any large tumors and then scraping the lining. Sometimes parts of organs, such assections of the intestines or the stomach, have to be removed because of the amount of cancer and the way it's involving those organs.
"You can take out what the person can live without," Wiatrek says. "Only a few things in your abdomen you need leave in, like the liver and the small intestine, the rest of the stuff you can take out, but we try to save as much of the organs as possible," to make recovery easier.
This cancer is not like most tumors that thrive on a good blood supply and react well to chemotherapy delivered intravenously.
Instead, this cancer is more of a jellylike substance that doesn't rely on the blood supply to grow. That makes traditional chemotherapy ineffective.
"It's one of those odd cancers," Wiatrek says. "It's mostly mucus that doesn't have any cells in it. It's fat cells gone awry."
People have tried other therapies with this cancer, but "none has panned out,"Wiatrek says."We do get really good outcomes this way."
The surgery to remove the cancer and then wash the abdomen with hot chemotherapy typically takes about 10 hours, butWiatrek has done one that lasted as long as 21 hours.
"It's definitely a marathon,"Wiatrek says. Because it is so labor intensive,Wiatrek says she can do only one of these surgeries a week. With a second surgeon, Texas Oncology will be able to do two a week.
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This cancer is typically slow growing, and the symptoms can be easily missed. Brooks, who had been a meter reader for Pedernales Electric Cooperative, was very active, but she remembers having some intense cramps that felt like they were coming from her ovaries. They didn't happen all the time, maybe once every six weeks or every two months.
In October 2014, she went to the hospital forknee surgery. She was having complications, and doctors thought she had a blood clot, but ascan revealed amass on her appendix.
She was so focused on the knee recoverythat she didn't really focus in on what the doctor was trying to tell her. At a follow-up appointment, she was referred to MD Anderson Cancer Center in Houston, but wasn't put on the schedule there until February 2014.
In Houston, she was told her cancer was slow growingand to come back in June to have the tumor removed. By the time she arrived in June, her cancer had spread and the tumor around her ovary, which she didn't realize she had, had grown too large to remove.
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"That means I'm going to die," Brooks thought. They offered to do chemotherapy for the cancer around the ovary, but it wouldn't be effective for the cancer along theperitoneum. "Why do I fight the ovary tumor if the (cancer on the peritoneum) is going to kill me?" Brooks says.
Brooks had a son-in-law who hadcancer,wentthrough chemotherapy and didn't make it. She didn't want that. She wanted to focus on the time she had left.
"I didn't think there was anywhere to go," she says.
She and her family put together her farewell party.
"I wanted to see everybody that I knew and loved before I was too sick," she says, "I had gone downhillrapidly. I was having trouble breathing and couldn't eat a lot at one time."
The mass of cancer in her abdomen was pressing on everything.
She says during that time she was depressed and stayed in bed a lot. "Nobody wants to say goodbye to their family," she says."It was sad."
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Brooks had done onlinesearches for treatments. Sheoften found optionsin England, or in Boston, but she was too weak to travel by that point.
After her children found this treatment and Dr.Wiatrek just down the road in Austin, Wiatrek was able to see Brooks quickly and start talking to her abouthyperthermic intraperitoneal chemotherapy.
It's an intensive therapy that often takes a few office visits to really have the patient understand everything fully, Wiatrek says.
By this point, Brooks didn't have any other treatment options, but there was a concern about whether she was strong enough to undergo surgery.
"I knew if I could get the tumor out, and she could heal, she was going to make it," Wiatrek says. "It was going to be a long healing process."
Wiatrek could not operate on Brooks right away. "She was extremely malnourished," Wiatrek says."Whenyou don't have nutrition, you don't heal."
The tumors, especiallythe one on Brooks' ovary, were large and pushing on her intestines, making it difficult to eat.Brooks was weak from not being able to eat much for weeks.
Wiatrek toldBrooks that she had to get her strength up by drinking Ensure nutritional supplementfor three weeks.
"I could only drink 2 ounces at a time," Brooks says, but she did it.
Wiatrek says that if there was any way she could make this work, she was going to do it."I'm a glass-half-full kind of person," Wiatrek says,but "it has to be the right candidate."
Wiatrek knew that Brooks was a fighter. "Even when she was really sick, she had a lot of determination," Wiatrek says. For example, Brooks walked into her appointments with Wiatrek even when she shouldn't have physically been able to do it. "There's a lot to mental toughness," Wiatrek says.
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Brooks says she wasn't afraid of the actual surgery. "I just left it in God's hands," she says. She tried to think of it as getting some rest.
Brooks surgery was nine hours. "The (cancer) cells were pretty much everywhere," Wiatrek says.
While Wiatrekscrapped as much of the cells that she could and felt like she had gotten it all, "there's always a chance some of those cells could be left behind," Wiatrek says, which is why the heated chemotherapy treatment inside the abdomen is so key.
Patients get repeated scans, first every couple of months, then six months out, and then every year to see if any cancer has returned. Sometimes they have to repeat the surgery and chemotherapy treatment.
With Brooks, Wiatrek didn't have to remove anything that would be essential toher digestive system.
The healing was slow. Brooks was in the hospital 45 days after the surgery.She was kept heavily sedated and doesn't remember much of the first few weeks. At one point, her intestines were popping through the surgical wound that was having trouble closing. Wiatrek took her back into surgery to secure her intestines. She was given a stem cell treatment to aid in the healing.
She also developed fluid in her lungs that had to be drained.
Brooks, though, was able to continue the healing at home, including wound care.
"It was a very lengthy ordeal," Brooks says, but it wasn't without moments of joy. On her birthday in October that year, her second granddaughter was born. It wasn't a birthday she expected to see, and "I didn't think I was going to live long enough to see that baby born," Brooks says. She's since had a third grandchild born.
"I'm just testimony to the power of divine intervention and tenacious children and a doctor that would not give up," Brooks says.
With every scan that she has to check for cancer, there has been good news. "Every year we get farther out, the more we feel like it won't ever come back for her," Wiatrek says."Joy's outcome has been great."
Brooks has since donated back the hospice bag she received.
"We're blessed," Brooks says. "We're just grateful. When you go through something like we've been through, you're grateful for all the people in your life and you're grateful for your faith.
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