Carlita McIlwain remembers her mother, Sylvia, as an entrepreneur at heart. Sylvia successfully ran more than 10 businesses in a lifetime defined by her devotion to her Catholic faith, her Native American-African American culture and fierce love for her family.
Sylvia had an unquenchable zest for life and traveled the world before she passed away just before Mother’s Day in 2021 from metastatic breast cancer (MBC). MBC is breast cancer that has spread to other parts of the body. There is no cure.
“Everyone was in awe of her because nothing inhibited her,” Carlita said. “She was the person who would do crazy things like bungee jump and go parasailing, even though she could not swim and was soaring over an ocean. She had this fearless spirit about her. She was going to take the world on by storm, and she did that all the way to the end of her life.”
Carlita grew up in a suburb of Maryland outside of Washington, D.C., with family who are also members of the Piscataway Conoy Tribe of Maryland. “Our culture was very important to my mother and our family,” Carlita said. “We have a dual culture, which is defined by our language, regalia, history, music and art, which has shaped who we are as a family.”
After retiring at the age of 50 from her career with the federal government, Sylvia and Sidney, her husband and high school sweetheart, moved to Myrtle Beach, South Carolina, to enjoy their golden years living on the beach. Sylvia’s passion for traveling propelled her to start a cruise and travel business, which allowed her and Sidney to take their children and grandchildren on many trips around the country and the world.
“My mother was a very service-oriented person,” Carlita said. “After she retired, she took on a lot of different activities besides keeping herself busy with all her businesses. She gave back to her community and to her church and was committed to women’s economic empowerment. She helped children. It was very, very important for her to give back.”
Sylvia always thought she would be diagnosed with colon cancer one day due to her family’s history. She never imagined she would be diagnosed with breast cancer in 2011 shortly after she felt a lump that she initially assumed was a cyst. After her initial diagnosis of stage 2 HER2-positive breast cancer, Sylvia underwent chemotherapy and radiation therapy.
Advocating for Sylvia
Five years to the day after she was initially diagnosed, Sylvia had no signs of the disease. Six months passed without any signs of cancer until Sylvia felt something like a ribbon under her arm beneath the skin. Doctors confirmed her breast cancer had recurred in the form of triple-negative breast cancer.
Six months later, Sylvia started a new treatment plan and began experiencing coughing spells and fainting spells. After a failed attempt to open her arteries, Sylvia’s surgeon and oncology team determined her cancer had metastasized to the lining of her lung and pelvis.
“She always had a very positive outlook on things and was very strong in her faith, so she was in shock because she was feeling good and thought there would be more treatment options. But she was given six months to live,” Carlita said. “She asked all her children and grandchildren to come down to Myrtle Beach. She told us all together about her diagnosis and said she wanted to live her last days doing everything that brought her joy.”
Expecting that she wouldn’t live longer than six months, Sylvia and Sidney moved back to Maryland immediately to be close to Carlita, her sister and brother, and extended family. “My mom initially moved in with my sister,” Carlita said. “My brother, sister, dad and I became her primary caretakers and alternated days when we would care for her.”
When Carlita convinced her mother to go get a second opinion, Sylvia hesitated. “She said, ‘Is it going to do me any good?’ I said, ‘I don’t know. We’ve just got to go and see. They may have additional resources.’ So we did, and the doctors said, ‘Oh, you’re not going anywhere. You’ve got time, and we have options for you.’”
Sylvia took the doctor’s declaration as permission to maximize every day despite living with a terminal disease and to enjoy the simple pleasures in life with her family.
Carlita attended many of Sylvia’s appointments alongside her father and sister to ensure the doctors had a clear understanding of her mothers’ symptoms, medical history and current treatment plans. She advocated for Sylvia to ensure that available options were decided together as a family.
“Based on a person’s age, sometimes they are not told about clinical trials or other treatment options,” Carlita said. “Because I knew about clinical trials through my career and knew the benefits, my mom was involved in testing options for drugs and therapies for a short period of time. She also had immunotherapy, which wouldn’t necessarily have been a part of her treatment plan if we hadn’t advocated for it.”
After spots started forming on Sylvia’s brain, Carlita remembers her radiation oncologist saying she shouldn’t undergo radiation therapy on her brain due to her age and condition.
“I pulled him out of the room and said, ‘You do not say that to her. It is her choice.’ When we came back into the room, my mom said, ‘Until the day they put me in the ground, I decide everything about my life. I want everything done for me that can be done because everything that is done keeps me here one more month or day that I can spend with my family.”
Sylvia lived just under two years after being diagnosed with MBC. She and Sidney, who Carlita describes as a devoted, loving and doting caretaker to her mother, were married for 56 years.
Sylvia’s children and grandchildren take an annual “Pink Walk” during National Breast Cancer Awareness Month in October in her memory. Since Sylvia’s passing, her grandchildren have traveled to Iceland, Italy, Spain, Jamaica, Dominican Republic and Mexico in honor of her adventurous spirit.
“Her grandchildren are determined to travel twice as much as she did in their lifetime,” Carlita said, “and I know she’d be so proud of them.”
In addition to the annual family walk and traveling to honor Sylvia’s memory, Carlita believes that working for Komen allows her to uphold her mother’s legacy by making a tangible impact to one day find the cures for MBC and all aggressive and deadly breast cancers.
“I believe my mother brought me here to Komen. I know that my work with Komen is going to help with future generations in my family, my cultures and the Piscataway Conoy Tribe. People within my cultures are afraid to even mention that they have a medical condition because they don’t know what people are going to do with that information. The history of medical misuse has caused mistrust,” Carlita said.
“My mom used to ask me all the time, ‘Why can’t you find a drug to fix this for me?’ It was the hardest thing to say, ‘We just don’t have one yet. We don’t have one to cure this for you or anyone.’ She would say, ‘Then make sure you find a cure so my grandchildren don’t deal with this in the future.’ I know that being here at Komen is a step in the right direction. I might not finish the race in my lifetime to find the cure, but we can all hope and pray.”
Donations made to Komen this week will be designated for critical MBC research. Since our founding, Komen has invested $1.1 billion in breast cancer research, with 72% of our currently funded research projects focused on MBC and other aggressive and deadly breast cancers. Above and beyond the millions of research funding provided each year, this year, we are going one step further to raise $1 million to fund the first ever MBC Excellence in Research Award. Donate to end MBC.