by Cynthia Greenlee
When I found a lump in my breast several years ago, I couldn’t bear to tell my mother. She was already walking in the shadow of cancer — not because she had it herself, but because she had become a cancer caregiver.
My family tree is blighted with cancer. My paternal grandmother had a radical mastectomy in rural North Carolina in the 1940s, a procedure that left her with an open, weeping wound where her breasts
My mother and cancer taught me much about what I know about caring and caregiving. When I was a child, relatives often recovered from cancer-related procedures at our house. My aunt Johannah lived in the North Carolina mountains and needed life-extending treatment only available five hours away, but closer to our house. My mother worked nights as a nurse, but was up in the morning to drive Johannah, her sister-in-law, to her doctor’s appointments an hour away. Sister-in-law No. 2 recovered from her biopsy in my sister’s bedroom. When another of my father's sisters was diagnosed, my mother drove over immediately and then took over the kitchen (because we’re black and Southern, and we believe that food, even the food that will clog your arteries, can temporarily beat back a crisis). And my mother did it all with a gentle smile and genuine graciousness. I inherited the smile but can only imitate the graciousness.
In late 2008, my mother’s older sister, Mary, didn’t make it to our family Christmas gathering a few miles from her house in Lake City, South Carolina. We knew something was terribly wrong. She’d been suffering from some leg problems that her small-town doctor assured her were “just arthritis.” “Just arthritis” was soft-tissue sarcoma, an exceedingly rare cancer. We found a sarcoma expert four hours away at Duke University, near our homes; though considered an expert, he had only seen 17 of these tumors in his career. He was excited to see one so large. As offensive as that may sound, we were grateful that her case piqued his interest. Even if he saw her as little more than a mass of cells gone awry, maybe he could save her life.
This began my mother’s all-out crusade to save her sister’s life. Fresh from retirement, my mother relocated to my sister’s apartment near the hospital and took care of Aunt Mary while we waited for the diagnosis and endured the cycle of boomerang hospitalization. Mom juggled all the appointments, the ambulance rides, the insurance claims, the calls from relatives, some of whom were mad that she had “taken Mary so far away.” She and my sisters did the literally heavy lifting of turning Aunt Mary in the bed, getting her to the bathroom, and attending to her comfort. I brought food, especially the soft-serve ice cream she loved; held her hand; and tried to talk in an overly bright voice about everyday things. All this while the doctors were saying that they might be able to save Aunt Mary if they could amputate her leg from the hip down. We were willing to relinquish that piece of her — and accompany her through rehabilitation, finding a handicapped accessible home — to keep her among us.
Aunt Mary had no biological children, but she was my mother. I am grateful that Aunt Mary didn’t believe in that wrong-headed adage, that “children should be seen and not heard.” Aunt Mary managed to laugh at my inane knock-knock jokes when they numbered in the thousands and must have driven her batty. As a schoolteacher, she bought me books, helped me grow seahorses in the summer, and tutored me in the fine art of elementary-school oratory, urging all her pupils to “say it with feeling this time.” Every trip with her was an adventure. When I was 6, she bought me my own coat of many colors -- a hideous fur cloak that shed all over the schoolbus seats but made me feel like a miniature Foxy Brown. As an adult, I would often talk to her on Sundays, after she’d taught Sunday school -- as she had for decades. When she died, I found this picture of me in her lockbox, where she kept the most important documents of her life.
Aunt Mary’s illness and death reordered our family’s universe. My 90-year-old grandmother, once under Aunt Mary’s wing, was now my mother’s ward. And, then, their younger sisters were both diagnosed with cancer.
My mother’s days are once again packed with appointments, as she manages an elderly mother and one sister’s continuing battle with breast cancer. Her mornings are consumed with making breakfast, checking medications, and getting everyone ready for a day of chemotherapy or radiation. The cancer treatment center is 45 minutes away.
We’re now all part of a weird “sandwich generation.” My mother is stuck between caring for her mother and sister, and my senior father, who lives in our family home in another state. Cancer, in its tyranny, demands that she be elsewhere. My sisters and I shuttle between our elderly father, the demands of our lives as young professionals and students, and caring for our mother, who has become everyone’s caregiver.
We can’t totally shoulder her burden, but I keep my phone on all night to take her early morning calls. Sometimes, she needs to talk at 5:45 a.m., because that’s the only time when everybody else is asleep. I send her checks and weekly shipments of her favorite artisanal bread that she can’t get in the small town that has become her primary home. Whatever we do, it’s not enough, and this is not the life I want for my mother.
I grew up in a family that said never to say the word “hate.” You didn’t hate anybody or anything, though we all really did.
But for the record: I hate cancer with a violence that surprises me. I hate that black women are struck with more virulent types of breast cancer, and I hate the health disparities that mean we get less and later treatment. That said, I can’t stand that breast cancer tends to be all people think about when they think about women and cancer. I detest that rare cancers aren’t common enough or lucrative enough for more research into their causes and cures. I’m angry that I can’t see my mother as much as I used to because she’s doing the work of keeping other loved ones alive, often to the detriment of her own health. Then, I feel ugly and selfish for those thoughts, or the moments where I insist that I have to do my own work and live my own life. I hate that cancer has left gaping holes in my family tree and that it will likely one day invade my body. So far, I’ve been lucky: That lump was nothing more than the patently unglamorous lumpy-breast syndrome.
More than anything, I hate that my mother, who is almost 70, is spending her twilight years tethered in place by cancer. And I hate that people who do nothing to help salute her and say that “she’s strong.” I know, from experience, that cancer kills strong, black women. I know that what doesn’t kill you – caregiving, for instance — can make you sick.
On this day, I wish my mother a full night’s sleep. I want her to have a day without having to think about cancer. On this day, I hope she can browse an antique store as long as she wants, run out to lunch without notice, ignore the ringing phone. I wish her a day when she doesn’t have to be strong.
Cynthia Greenlee is a doctoral candidate in history at Duke University, a Southerner by birth and choice, and a reproductive rights advocate based in North Carolina. She is a participant in the Strong Families project Echoing Ida. Follow her on Twitter at @CynthiaGreenlee.
This blog post is part of the Strong Families Mama’s Day Our Way celebration. You can read more posts in the series on the Strong Families blog. Strong Families is a national initiative led by Forward Together. Our goal is to change the way people think, act and talk about families.