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Living with advanced sarcoma

Rev. Dr. Stacey Simpson Duke, a Michigan pastor reflects on living with a stage 4 cancer diagnosis.

Video by Stephanie King.

On a sunny Sunday morning in late January 2018, the Rev. Dr. Stacey Simpson Duke stood before her congregation and shared some difficult news.

“Feeling totally healthy and completely fine, I was presented with the shocking news that I have an advanced form of a rare cancer called leiomyosarcoma,” she told them. “Apparently, it started as a small, painless knot in my thigh, but because it wasn’t caught and removed as soon as it appeared, it metastasized to my lungs. And because it wasn’t caught and dealt with when it was only in my lungs, it then metastasized to my liver.”

Forty-six at the time, her sermon that morning explored themes of the relationship of the body of the individual to the body of the community.

“This has been the most traumatic and terrifying thing I’ve ever faced in my life, and I realize that though I’m ‘ground zero’ for this particular crisis, it is affecting many more people than just me. My family, obviously, is very much in the midst of this trauma. And you, my church family, are, too,” she said, adding that in one sense she had “already been healed,” because she knew she was not facing the challenge alone.

In a recent interview, Duke -- a Georgia transplant who has been co-pastor of First Baptist Church of Ann Arbor with her husband Paul since 2001 -- reflected on her cancer journey and on living life with a stage 4 cancer diagnosis.

Despite having spread from the primary tumor in her leg to other organs, Duke’s disease is currently well controlled. Treatment with biologic therapy and chemotherapy has led to dramatic shrinkage of the tumors in her lungs and stability of metastases in her liver with “mild, very livable” side effects, she says. She expresses gratitude for her entire care team at the University of Michigan Rogel Cancer Center, including interventional radiologists who assisted with several complications.

“What’s striking is how deeply the Rev. Duke is engaged in learning about the disease and in being an advocate,” says Rashmi Chugh, M.D., Duke’s oncologist at U-M. “At the same time, she doesn’t let the disease define her. She’s still her own person with a full, rich life -- which is exactly what we always hope for our patients.”

In the immediate aftermath of her diagnosis, however, Duke’s emotions were raw.

“I felt like I was at the height of my life physically, vocationally, in terms of my family and plans we were making, and it was like I just watched everything blow up and blow away,” she says.

In those painful early days, the truly important things in her life stood out in sharp relief.

“In the beginning, when everything feels so traumatic and so fragile, and that you're living so close to the reality that everything is going to change at any moment, it's easy to let it go when the child who's supposed to take the trash out didn't take the trash out. You let the stupid small things go.”

A sense of urgency infused Duke’s work, too. She led the push for the church to take a more public and vocal stance on inclusivity. And that June the congregation voted overwhelmingly to adopt an official “Statement of Welcome.”

The statement affirmed the church will “joyfully welcome and affirm individuals of any age, race, ethnicity, nationality, physical and mental ability, gender identity, gender expression, sexual orientation, marital status, level of education, economic circumstance, and religious background to participate fully in all aspects of the life and ministry of our church.”

Yet over time, that hyper-charged state is difficult to maintain, she says. Mundane life reasserts itself.

“If you think you're going to die in a month, you'll be like, ‘Paying bills, that's just a detail. I need to spend time with my family.’ Well, you can't live like that over two years or indefinitely. Eventually you're going to have to pay the bills and whatever other details you've decided were the small stuff,” Duke says.

For her, that included investing in her relationships with people across the many spheres of her life.

“My husband and I were talking about this just a couple of nights ago, that it's almost inevitable that everyone else is going to get the better parts of you because when you're home you're in a safer place to break down or to be more fragile, and to complain about things, and to be unhappy about things,” Duke says. “So if you're not careful it can turn out that your home and your family become the place that only gets your worst feelings, your sadness and anxiety, however that comes out.”

A rare cancer

Rev. Duke talks with two parishioners
images by Leisa Thompson TK.

Less than 1% of cancers in adults are sarcomas, Chugh notes. And, of those, approximately 10% are leiomyosarcomas -- tumors that originate in smooth muscle tissue.

They can arise pretty much anywhere in the body and can be difficult to diagnose.

“Sarcomas can often present as just a lump or bump, and people can otherwise feel healthy, so they can go undiagnosed for years,” Chugh says. “Typically, patients don’t have a family history or other clear risk factors — we don’t know why they occur.”

The American Cancer Society encourages people who find a new lump or a lump that’s growing anywhere on their body to have it examined.

Chugh also recommends that patients who are diagnosed with sarcoma seek treatment at a high-volume, multidisciplinary sarcoma clinic, like the one at the Rogel Cancer Center. That way, a team of doctors who specialize in the rare disease and the latest treatment options can weigh in on an optimal course of care, and potentially provide access to new clinical trials.

Evolving Faith

Looking back, Duke reflects on how her cancer journey has changed her.

“I don't ever want to stop evolving, and that includes with my faith,” she says. “When I was first diagnosed, my starting place was not thinking in terms like, if God cares about me I won't get cancer, or if I have cancer and pray right, God will fix it. Or if I have cancer, it means God is punishing me or that I did something wrong or I didn't have enough faith.”

While Duke says it’s not yet clear all the ways in which living with cancer has transformed her, she knows the last two years have been a time of growth and change.

“I have been learning new dimensions of what unconditional love means,” she says. “I feel like I'm learning that everybody is doing the best they can. I'm trying to grow in my acceptance of other people, and my growth in unconditional love also has to do with full acceptance of my body, my physical health, and my situation. I'm not a person who uses battle language or thinks of cancer as the enemy even, because the cancer cells are also me. I mean, that's my body. My body is not the enemy.

“I think a lot about what it means to accept my cancer, my symptoms, my side effects even -- how to embrace reality in a loving way, which doesn't mean not trying to make changes where changes can and should happen,” she adds.”

As a pastor working with parishioners who are going through their own challenges and tragedies, Duke says her definition of what it means to help has also evolved.”

“I’ve always been an empathetic person, but I think we often feel like we need to do something to help someone. We have a very narrow definition of what it means to help,” she says. “Especially in my early ministry, I would feel helpless if I were visiting someone who was sick or grieving, feeling that I couldn't help them because I thought help meant fixing how they felt about things.”

“Now, I'm much more comfortable with just being present with someone,” she continues. “I know that simply being present with someone is often the thing they need the most. I feel less internal pressure to try to make things better in terms of what I say to them. I don't have to fix their perspective. I don't have to fix their feelings. All I need to do is show up and care.””

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