(Traducción en español)
Photo: Manny Perez races against cancer on his bike. (La Opinion/Araceli Martinez)
RIPON, Calif.–When Manny Perez rides his bike and breathes in the fresh morning air, he feels free, and does not think about anything — not even the bone cancer he has battled with fierce determination and overcome, time and time again, since childhood.
“Pedaling for 25 miles almost every day makes me feel better; it relaxes me,” says Manny, who is 23.
His mother, Sandy Perez, says the bicycle is the best way to measure how her son feels. “When he is not on the bike it is because he is very tired, and not feeling well. When he does ride it, I’m pleased.”
Manny’s 13-Year Battle
The young man has fought bone cancer for 13 years — he was 10-years-od when it was first detected. He recovered, but it returned twice thereafter. The terrible sarcoma showed up again just last December.
“I get severe pain in the back. I lose a lot of strength. The legs get paralyzed and go numb,” says Manny.
He has undergone seven surgeries in which doctors tried to remove as much as they could of the malignant tumor covering his spine, but after a few years of wellbeing, it returns.
“It is devastating,” says his mother. “Manny has gone through a lot. He does everything right, takes his medicine, gets exercise.” Sandy is also a registered nurse, who has been Manny’s primary caregiver while his family has built a team to help and care for their only son.
His father, David, a manufacturing engineer, his younger sister Selise, and his girlfriend Michelle have been at his side throughout.
“We’re Mexicans, and when Manny has had surgery, the waiting room has been filled with 20, 25 family members,” says Sandy.
Manny confesses that it is precisely the family support system that has given him the strength to continue. “I’m not happy to have cancer, but I accept it, and I have a very strong family and friends who are with me.”
“It’s tough,” stresses his father, David. “One cannot give up. Although doctors have told us that there is no cure, there is always the chance of a miracle. So the family doesn’t give up. Manny doesn’t give up. He sees his cancer only as a setback in his life.”
A Positive Attitude and Palliative Care
Michelle, Manny ‘s girlfriend of three years, describes him as strong and very determined. He does not look frail. On the contrary, he looks vigorous, a healthy young man with a very positive attitude.
Besides his family support, Manny is bearing the burden of stress caused by his cancer with help from the palliative care being provided by Kaiser Permanente.
Like most people, especially in the Latino community, Manny does not fully understand the difference between the confusing term, “palliative care,” and hospice — he believes palliative care is to “keep you comfortable until you die.”
But that describes hospice services, which come during the last stages of life. Palliative care begins much earlier, and can help seriously ill patients live better with both comfort care and medical treatment as needed.
Manny’s mother says he knows that there is no cure for his disease, and his doctors are doing everything to keep him comfortable. “We will continue to deal with the disease,” she states.
Through providing palliative care, Kaiser has been trying to provide Manny with a good quality of life while living with a debilitating illness. He has chosen intensive medical interventions, at times, because they have allowed him to get back on his bike, go to school, and spend time with his family, with the understanding that the intervention is not a cure.
His Dream—Becoming a Doctor
The excruciating cancer has not stopped Manny’s dreams of becoming a doctor. And he believes fervently that as long as he lives, there is hope for a cure. “I still have faith; I continue to pray. I do not stop. Giving up is not an option, because if I do, the cancer will take my body,” he says with conviction.
Romina Rosen, a geriatric physician and palliative-care specialist at Kaiser Permanente Medical Center in Panorama City, said what Manny’s family has been doing for him, battling for his life and not giving up, is normal when the life of a young person is at stake.
“Palliative care can help him in his fight to deal with his symptoms and pain. And no one can guess what can happen,” Rosen said.
Very few Latinos who are facing chronic or terminal diseases, as Manny is, know what palliative care is or how it can help them when they are diagnosed with an incurable disease, whether they are young or old. Most have not even heard of it.
A poll commissioned by the California Health Care Foundation (CHCF) in 2011 showed that only 23 percent of Latinos have heard of hospice, which is non-medical comfort care for the terminally ill, usually provided at home until hospitalization is necessary.
Emma Dugas, of CHCF, says the California State Hospice Data Report of 2012 shows that only four percent of terminally ill Latinos age 65 or older had the experience of hospice care, versus 85 percent of whites.
Advantages of Palliative Care
Palliative care is the area of medicine that controls pain and symptoms so a person is comfortable. Hospice is the type of interdisciplinary care that is given mostly at home. Both can help the terminally ill of any age. “It does not necessarily mean they have no life expectancy,” said Silvia Austerlic, Latino Cultural Liason, Hospice of Santa Cruz County.
Actually, studies have shown that palliative care can result in several months of prolonged life on average, because it reduces stress, pain, uncertainty and emergencies.
Austerlic, who immigrated to the United States from Argentina, said a key reason Latinos do not know about this type of care is that, “they don’t have good access to health care. When it happens, this care does not take into account cultural differences. So Latinos face many barriers to access of this service; and often when they get it, it is too late.”
Access to hospice for the terminally ill is complicated among Latinos because of cultural issues, she adds. “They don’t talk about death. We used to say, ‘Don’t say that–you have to give all you’ve got.’ And it is very hard to see a loved one decline.”
“They think that home palliative care hastens death. So we badly needed to get out, educate and build trust,” Austerlic emphasizes.
Palliative care aims to provide the most appropriate care, as patients require it. “Perhaps what a person might need is not more medical treatment, but instead, to be calm at home. Give him or her his pleasures,” says Austerlic.
Latinos More United
Rosen, who has provided palliative care for over 10 years in the homes of very ill Latinos, said it is an ideal program for them, because “they are more united. They help each other.”
“What happens when you do not know anything about this type of care, is that many Latinos, especially the elderly with chronic conditions that have no cure, is that they leave hospitals feeling worse. Or they end up in a nursing home suffering, when they would be better cared for in their own home,” she said.
Manny Perez has been lucky because he has received the support of his family in his own home, and gets palliative care when he needs it. But that is not the case for most of Latinos in the United States, a demographic group projected to grow another 30 percent by the year 2050.
Clearly, the challenge of increasing access to palliative care and hospice for Latinos is to start educating them at all levels, so they may have a better quality of life at the end of their days, without much suffering.
“And who knows, someone might tell you that you have six months to live,” says Austerlic, “but who can say that for sure, with a good palliative and hospice care?”
Araceli Martínez Ortega wrote this article for La Opinion through a California Healthcare Foundation journalism fellowship, a project of New America Media in collaboration with the Stanford In-reach for Successful Aging through Education Program.