Volume 1, Issue 1, Winter 2012
UNA BIOGRAFIA SOBRE MI MADRE
By Jesus Arciniega, M.S.
The Arciniega family emigrated from Mexico to the United States decades ago. They made ends meet and raised four children in a two-bedroom house, which they called home. This is the story of how it began, how colon cancer colors it, and how difficult it has been to pay for the necessary chemotherapy—told by one of those four children.
This is a story about a Mexican immigrant, her cancer, and her struggle to afford her medication. First, let me tell you a few things about the woman—who, by the way, just happens to be my mom. Her name is Maria. She was born in Northern Mexico in 1936, which seems like the Stone Age compared to today. Her mother died when she was only five years old. Being very poor, she, her father, and her brother moved from home to home living in places where friends or family allowed them to stay. In Mexico, during that time, these places were known as a prestado, or a “borrowed” residence. In other words, it was a place where my mom, her brother, and her father were permitted to stay rent-free thanks to the property owner. Normally, places like this rented for about 5 pesos per month—my mom recalls that in those days, $1.00 US was equal to 8 pesos. To give you a perspective on their financial situation, employment for my grandfather was sporadic. Even when he did find work, he only earned somewhere between 3 to 8 pesos a day.
One of these prestados was an adobe shack-like structure with dirt floors. My mom recalls using the fireplace to cook the family meals. She would place the pot or pan containing the food that she was cooking on rocks organized in the fireplace around the burning wood. There were cracks in the adobe walls large enough for critters to get through. This bothered my mom. She was concerned about this because she slept on the floor on a comforter type blanket and worried that someday something would crawl on her. To ease her mind a bit, my grandfather took some sturdy branches from a tree and used them to build her a makeshift “bed”. The adobe, of course, had no indoor plumbing, bathroom, electricity, gas and certainly no home appliances. It had no bedrooms. It was just one small square structure.
We didn’t have much, but we had each other
Although naturally bright and creative, being a poor young girl growing up in Mexico during the 1930’s and ‘40s, her educational options were limited. Nevertheless, she attended school through the fifth grade, learning how to read and write in her native Spanish tongue. Eventually, not far from the town where she grew up, she met my dad and life changed dramatically for her.
They met in 1954 and had a three-year courtship, eventually getting married in 1957. My father ventured north to the United States before he married my mom. He went to Los Angeles where he found work and took up residence with an older sister. Eventually, he saved enough money to marry my mom and returned to Mexico. In Mexico, it falls to the groom to pay for wedding expenses, including my mom’s wedding dress and shoes. After the wedding, my mom joined my dad in the U.S. but had to wait for three months at the border (she stayed with one of my dad’s aunts) before she was able to obtain her visa.
My father worked as a physical laborer all of his life—the last 15 years or so as a custodian. When my mom joined the work force years later, she too worked as a custodian. In the 1960s, although their income was extremely modest, they were able to save enough to purchase a home in a town just outside of L.A. My mom had a baby-sitting job that paid $10.00 per week. They needed $600.00 for the down payment on their home that was purchased in 1965. It cost $11,500. Eventually, she was able to save $300.00, which was half the amount they needed for the down payment. To come up with the other half, they decided to ask for a bank loan. Initially, the conditions on the loan made it impossible for them to get the loan but, in time, the terms of the loan were adjusted and my parents purchased the house. It was a small two-bedroom. They raised four kids in this house. My father past away in 2002, and my mom remains there to this day.
She has cancer, but she also has us
This year, after decades of relatively good health, we learned that my mother had a number of lower abdominal ailments including colon cancer. She went through a major operation in early February, has experienced complications, and has been trying to recover ever since. The whole experience has meant heartache for the whole family, and it has taken a significant physical toll on my mom. She does not have to undergo radiation treatments but is taking chemotherapy. In addition to the cost of the surgery, which was over $200,000, the cost associated with the cancer drug is astounding.
A month supply of the chemotherapy drug costs $8,000.00. My mom is insured, but her insurance, which is connected to Medicare, does not fully cover that amount. She has a $600.00 co-pay. In addition, because of the Medicare Part D Coverage Gap (also referred to as the Medicare Donut Hole) patients can be left with thousands of dollars of unanticipated out-of-pocket costs. (Please see the following link http://www.donuthole.com for more details on this.) Fortunately, we learned that there are organizations that help cancer patients find grants to cover a portion of these high costs. Thankfully, my mother was awarded a grant of $10,000 by the US BioServices Company (http://www.usbioservices.com/) to cover co-pay costs. However, if it were not for the care and expertise of the people around her and, in particular, my older sister who is a human resources expert, my mom would not have been able to navigate the application process associated with the grant.
I don’t know what the future holds, both for my mom’s health and in terms of continued access to the expensive cancer drug. But, my hope and prayer is that my mom’s health will improve and that she will win the battle against this awful disease. I also hope that this story is an encouragement and resource to those, and their family, who are also fighting to survive, and afford, cancer.
Jesus Arciniega is a college counselor at the University of California, Berkeley.