My daughter’s cancer journey: An indomitable spirit until the end

OPINION: Lindsay, who was diagnosed with a rare cancer, lived as fiercely as she could in the time she had.

As we embark on the new year, our humanity will constantly be tested in the face of this pandemic, a fragile democracy and the senseless assaults on Black people in America. Yet, some of us have shared grief because of loved ones we’ve lost due to incurable diseases such as cancer.

A mother never wants to funeralize her beloved child. It’s simply not the natural order of things. But coping with my grief forced me to reckon with the constant emotional pain of supporting my daughter, who received a diagnosis of a rare sarcoma called malignant peripheral nerve sheath tumor or MPNST. There is no cure for sarcomas, especially an MPNST sarcoma. However, it’s important to share our tragic stories of resilience and grief to empower other families to embrace the unknown and live abundantly in every moment we cherish.

People often say to me, “You’re a pillar of strength,” and I graciously thank them but dismiss this remark as readily as it’s spoken. As a Black widow, mother, educator and womanist, I know that Black folks have survived slavery, lynchings, rape and financial apocalypse, yet nobody says, “Black folks are a remarkable pillar of strength!” We simply soldier on.

I once joked with a sister-friend after my husband died when we had just celebrated our 20th wedding anniversary, “I wish had the luxury of a nervous breakdown like my white friends.” She smiled and said that true equality for us would encompass free therapy for Black folks just because we’re “living Black in America” every day. I know this to be true. However, nothing could have prepared me for the grave shock of hearing Lindsays physician tell us that her sarcoma was terminal. I wept, and the tears are permanently etched in my soul.

The oncologist walked into the room at Memorial Sloan Kettering and uttered the following earth-shattering words to my 26-year-old daughter: “We’ve come to the end of the road. There is no other treatment available and nothing else that we can do.” My daughter was texting her friends in a group chat on her iPhone and looked up briefly before stating, “So what you’re telling me is that I’m just going to die, period.”

She didn’t cry or blink a tear. The words came out so matter-of-factly that, for a moment, I thought she might have been experiencing PTSD. The physician simply looked at her and said, “I’m sorry. I wish I had better news.” Then I wrapped my arms around my daughter and simply said through tearfully stained, bloodshot eyes, “Honey, I don’t care what the doctors say, we’re going to focus on living because all of us have an expiration date; some of us sooner and others much later.”

Lindsay in June 2010 (Photo courtesy of Shawn Grain Carter)

My late husband Richard Carter and I gave birth to our beloved Lindsay Grain Carter in 1991 and relished the joy of raising a fearless Black woman with the kindness of Michelle Obama and the fierce strength of Ida B. Wells. She always saw the goodness in others. However, after graduating from Mount Holyoke College, she embarked on a trip to California as a volunteer in Americorps before returning home where she received a diagnosis of MPNST sarcoma on her trachea. Unfortunately, surgery was the best-known protocol to prevent the spread to other organs within her body.

Her neurologist, Dr. Kaleb Yohay, championed her cause as we partnered to exhaust all options available for such a rare type of cancer. He called the best oncologist and reached out to the best surgeon at MSK to see if they could operate on Lindsay since the CT body scan showed a rapidly growing, aggressive cancerous tumor. Lindsay also had a rare diagnosis in elementary school called NF1 neurofibromatosis and her fibromas became malignant tumors as she entered puberty and blossomed into young adulthood. NF1 disease is a condition that causes a rare growth of tumors along the nerves throughout the body. Her MPNST sarcoma stemmed from this disease as a result of her tumors becoming cancerous.

Like one of her favorite designers, Virgil Abloh, she never told her friends that she had cancer. After battling this sarcoma for three years and successful surgery to remove the tumor, it returned in a different part of the body, this time in her mediastinum, the chest cavity between her lungs. Radiation and other treatments had to be suspended. The average life expectancy after a sarcoma diagnosis is several months at best.

Lindsay was completing her Master’s thesis and earned her Master’s of Public Administration from Rutgers University; she never told her professors that she was suffering from cancer. I drove her back and forth to her treatments and spent the night in the hospital every night so she was never alone. Friends and family took turns during the day while I taught my classes at SUNY Fashion Institute of Technology and only my dean knew about my personal challenges with my sweet daughter.

I considered a leave of absence, and my daughter admonished me for thinking about such a choice. “How come you always tell me to stand strong and fight for what is right, Mom?” I explained that I was fighting for her as an advocate since she faced the battle of a lifetime. She nodded as the morphine drip kicked in and simply said, ”Those students need to see a Black professor in the classroom, Mom. It’s so rare on college campuses and it’s important that you show up and show out! Besides, you and I have Black Girl Magic!”

Her 27th birthday was celebrated on Aug. 24, 2018, in the hospital conference room with friends from both Mount Holyoke and our leafy bucolic neighborhood in South Orange. She died on Sept. 15, 2018. My relatives prefer to say that she “transitioned or passed away”; however, she died, and her legacy of love and truth lives on in our hearts. Our family supports the Children’s Tumor Foundation in her memory. My beloved Lindsay would have it no other way.

Shawn Grain Carter is a tenured Fashion Business Management Professor at the Fashion Institute of Technology SUNY campus, which she joined full-time in 2000. Her distinguished career began as an Executive at Bloomingdale’s. In 1986 she launched Bergdorf Goodman’s Home Furnishings Division “The Home on Seven” as a Buyer for several years. In 1991 she and her husband Rick gave birth to their daughter, Lindsay. In 1995, Shawn became Merchandising Director at the European luxury brand MCM. Her responsibilities included marketing for Europe, Canada, the United States and Japan. In 1997, Macy’s hired her as a Director to help launch their eCommerce website, Macy’ Her responsibilities included Designer Sportswear such as Calvin Klein and Ralph Lauren. Professor Grain Carter was selected as a Visiting Scholar and Lecturer at the University of Huddersfield, England in 2004. In 2016, she taught Case Studies in the Fashion Industry at ZSTU in China. Ms. Grain Carter received her Bachelor’s degree from the University of Virginia where she double majored in African American Studies and Women’s Studies. She later earned an MA in Fashion History and Museum Studies from F.I.T. In 2020 she created the African American & Africana Studies Minor at F.I.T. She received the Lifetime Achievement Member Award from Alpha Kappa Alpha Sorority Inc. in 2016 and the Jack and Jill of America “Distinguished Mother of the Year Award” in 2006. She serves on the Orange Orphan Society Board as a Trustee and the Memorial Sloan Kettering PFACQ Council as a Board Member.

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