After losing her brother to cancer, a writer set out to understand the "rogue wave that took me out." A chief MD helps walk her through.
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My brother and his wife had just celebrated their 50th anniversary this year, a surprise arranged by their four sons. When the couple entered, the same polka band that had played at their wedding struck up the Polish bridal dance. Their look of confusion melted into happy tears as their sons and their families came forward to embrace them.
You wouldn’t have known it that day, but for the past five years, Nelson had been battling neuroendocrine cancer. To greet their guests he stood tall and strong, and later danced to the polka band. Before my family and I left Pennsylvania to return to our home in Maryland, he gave me a hug so big that I had to reach up to get my arms around his six-foot-plus frame. I assured him I’d visit again this summer.
Neuroendocrine cancer
According to the Mayo Clinic, neuroendocrine tumors, NETs, are cancers that begin in cells called neuroendocrine cells, similar to those of nerve cells and hormone-producing cells. Neuroendocrine tumors are rare, with most first appearing in the lungs, appendix, small intestine, rectum, and pancreas. In 2020, after doctors removed a tumor in Nelson’s lung, he was “cancer-free.”
An avid daily walker, he aced his cardiopulmonary rehab and went on trips to visit his sons. Then, life changed.
I’ll never forget that text less than two years before his death: They found a spot on my liver. My heart sank. I felt strongly he’d overcome it again; it was impossible to imagine anything else. Nelson held a large presence in so many lives. When visiting our hometown, or even here in Maryland with its Pittsburgh diaspora that sent many of us here after coal mines and steel mills shut down, I’ll meet someone new. We start talking, and then I hear, “Aren’t you Nelson’s little sister?”
Doctors managed the best they could to eradicate one tumor after another. Nelson followed doctors’ orders, and it seemed like he was doing okay. Until he became suddenly breathless in mid-July and wound up in the ICU. But we still had hope. For two weeks, we all visited, hoped and prayed, and bargained. I lost my oldest daughter, Nicole, 19 years ago. I’m reluctantly familiar with devastating, mind-blowing grief. Yet I was still unprepared for the rogue wave that took me out when my brother died.
We will all experience grief
Grief is a unifier that can lead to greater compassion for yourself and others. We all go through it, and grief can manifest in many ways. “Some may feel anger or guilt, disconnected or numb, and even experience physical maladies like pain, nausea, vomiting, or the inability to sleep or eat,” says Dr. Raya Kheirbek, Chief of Palliative Care at the University of Maryland Medical Center in Baltimore, Maryland.
I saw my nephew’s number appear on CarPlay as I drove home after leaving the ICU. I knew it was coming. But my head still erupted with throbbing pain, my heart grew heavy, and my stomach hurt. Katherine Henderson, Senior Clinical Chaplain for Outpatient Spiritual Care at Duke University Hospital in Durham, North Carolina, says, “In the acute phase right after the loss, if this is a major loss for you, your system is in so much shock; your appetite decreases, your sleep patterns are messed up, and these are normal stress responses to a major loss.” People who are grieving may also experience brain fog, confusion, forgetfulness, and irritability. “Grief is like waves on the ocean, and you’re not in control—you’re just surfing the waves,” Henderson explains.
“You have to feel it to heal it”
Most grief is normal, and we just have to live through it. “We need to feel it to heal it,” Henderson says.
At first, the waves come frequently, with intensity, and then level out, with “storms” erupting from time to time. Right after I talked to my nephew, my mind went from numb to racing. The next day, our family was leaving for a trip to Southern Shores, North Carolina, so that I could write and vlog about accessible travel along the Outer Banks.
For the first time in 11 years, I wasn’t looking forward to our beloved annual excursion with our kids. Instead, I wished that my brother were well and would be leaving for the beach with his family, too. As we drove south on Sunday morning, it felt like I was abandoning Nelson. Warm tears welled up and clouded my gaze out the window.
It was Wednesday when my husband and I drove up to Pennsylvania for the visitation. As I sobbed by the casket, I noticed a dog’s collar. Gus. The sweet little Sheltie that Nelson had adored, who died of cancer years ago. Gus, who ate socks, trays of holiday cookies, and chocolate bars that one of the boys was selling for band. Gus’s cremated remains were next to Nelson’s casket. My sister-in-law and I recalled together how Nelson always said that Gus would go with him when he passed. We just never imagined the day would actually come.
Managing grief is exhausting
Without our realizing it, says Henderson, grief runs in the background of our minds, trying to make a mental map of the world without our loved ones in it. All this background processing can exhaust us. “You’re trying to make sense of it, it’s like, wait, what happened? Will I talk to them tomorrow? They can’t possibly be gone. You still expect them to be there in some sense,” says Henderson.
The funeral seemed surreal, veiled behind some alternate universe. Nelson should have been standing there talking to someone. He attended every funeral, wake, and wedding. My eyes kept searching as I fully expected to see him. I was waiting to get a text from him. Fatigue and another headache followed me back to the Outer Banks the next day, where I simply floated on the waves, in a literal sense, with my kids, as we talked and laughed about Nelson’s antics over the years.
In the beginning, you’re busy planning a memorial or service. Your only job is to do what has to be done. “Take care of yourself like you’re a little kid again,” Henderson says. “Make sure you drink water, eat a little bit, and get into bed and rest at night, even if you don’t sleep.”
Dr. Kheirbek says journaling can eventually become helpful, or exercises like swimming or yoga. Or simply being with friends, finding community with others walking a similar journey, or counseling. Hospice can offer suggestions for free bereavement counseling, even if your loved one was not in hospice.
Silence is okay, too. “We’re always talking [as a society],” Dr. Kheirbek says. It’s okay to be quiet, or to not want to go out at first. “Holidays and anniversaries often heighten grief and loneliness for many,” she explains. Plan to be with a close friend or family member, someone you trust with your feelings. Or, become part of a community, reach out, and help others during the holidays.
“Do not rush the grief away,” says Dr. Kheirbek. Our modern society marginalizes grief, and there is a lot of pressure to move on. “But it comes back,” she warns, and it will resurface as we age.
Even if you feel like you’re progressing, and you have resources—adds Henderson: “If you start to feel lonely or isolated in your grief, it might be a good idea to find a peer group where others can understand your experiences, and you can make new friends.”
Grief never stops, but it changes
“Your life will get bigger around it,” says Henderson. You might grieve through humor, funny memories, or by celebrating how awesome they were. Over time, it becomes bittersweet. You think of how great they were and how they impacted your life, as you begin to figure out how to carry their light forward. I’ve added cancer to my growing list of advocacy efforts, along with sepsis, disability, and mental health. I’m swimming five miles for the American Cancer Society. In one of Nelson’s last texts, before he landed in the ICU, he told me to keep going to Washington, DC, to keep talking and writing, because people would eventually hear and my words would have the power to change the world. I will never delete that text.
“Grief is not something you choose; it’s something that happens to you,” says Henderson. It’s something that happens when someone you love deeply is no longer here the way they used to be. We have to normalize grief. Grief can help us find meaning and serve as an opportunity to grow and build resilience.
Grief can’t be fixed
“Presence matters more than words, just listen, and be an observer of their grief,” says Dr. Kheirbek. Give someone who’s grieving time to talk without interruption. Don’t compare, even if you had a similar loss. Everyone grieves differently. Refrain from saying, “These things happen for a reason,” or “They’re in a better place.” “The only real medicine for grief is acknowledgment, and that requires us to be able to say, with compassion, ‘I see your pain, and I’m not trying to fix it’,” says Henderson.
“Grief is the palpable presence of someone’s absence. Cry, allow yourself that feeling; it’s okay, we need to normalize grief, we can’t fix it, we can’t throw a pill at it,” says Kheirbek.
Grief is love with nowhere to go. So, I’m pouring that love into the people around me and those who need help. To capture and embrace every moment I spend with my people and preserve that snapshot of time. I’m still riding the waves, while I carry two special people with me and carry their light forward to do my part to make a better world.
That last hug
Less than three months after I’d hugged him at his 50th anniversary celebration—right around the time I had planned to visit him again—I was instead standing at the podium in our childhood church, reading a funeral passage and gazing at a casket I still couldn’t comprehend to be his.
I still hear that distinctive laugh whenever my brother told a funny story, and he’d have everyone laughing with him. I can see him sitting at the kitchen table poring over the newspaper, complaining about small-town nonsense and Southwestern Pennsylvania politics.
In business, Nelson’s customers had become friends. He used to leave his insurance agency on lunch breaks and stop by our mom’s house to carve two slices of her homemade bread for a ham and tomato sandwich.
I’ll continue to remember the best of him. How he’d started working every morning before high school to supplement our dads’ coal miner salary. The new stove and stereo he bought to make our Depression-era parents’ lives easier. How he loved parties; how growing up, we’d sit on the floor together to watch American Graffiti and Happy Days.
As we grew older, texting enabled us to keep in touch in the quiet hours of the day we were discovering as our kids were grown. We came to send each other novel-length message threads, working out the world’s problems and updating each other on our kids.
I’ll always be “Nelson’s little sister.” When I publish my first book or make my first big speech in front of Congress, I won’t be able to text him like I always did, but I have a feeling he’ll know.
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