In the two years since she received a diagnosis of stage 4 leiomyosarcoma, the Rev. Dr. Stacey Simpson Duke has had time to reflect on some of the practical aspects of living with the uncertainty of her disease.
In an interview with the Michigan Health Blog, she offers practical tips for talking to friends or loved ones with a similar, serious diagnosis, and about planning for the future.
Stage 4 means that a patient's cancer has spread beyond the site where it originated to other parts of the body through a process known as metastasis. Sometimes called "advanced cancer," metastasis typically marks a shift from treating to cure toward attempts to slow the cancer's growth and mollify symptoms.
One of the hardest aspects of receiving a stage 4 diagnosis were the comments of well-meaning friends and acquaintances, Duke says.
"People would say things to try to make me feel better, and I realized how little people knew about what to say," she says.
People would say things to try to make me feel better, and I realized how little people knew about what to say.Rev. Dr. Stacey Simpson Duke
Often well-wishers didn't appreciate the gravity of Duke's situation, offering platitudes and battle themed language along the lines of, "You're going to beat this!" Or, on the other end of the spectrum, someone she didn't know very well referred to her as "terminal."
"That kind of language really hurts," she says. "My reality is hard enough, and then people will say things they don't realize are hurtful and that just makes things worse." At the same time, though, she is also overwhelmed by the love, care, kindness and generosity that has been shown to her.
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Duke's advice for speaking to someone in a similar situation: Listen and be empathetic, rather than offering bromides or advice.
"Listen to the real feelings a person might have," she says. "To me, some of the best things that people said to me were things like, 'This sucks.' It sounds so simple, I mean, it's two words, but avoids going to the extreme of, 'Oh, this is so horrible, I can't imagine how you're feeling.' When someone says that, I want to say, 'Can you really not imagine that? Can you not understand what it might feel like?' Much better, to me, is, 'I'm sorry that you're going through this.'"
Duke appreciates when someone asks how she is doing. But if she gives a cursory answer — "I'm fine" or "I'm good" — unless it's a good friend, the last thing she wants is for the person to persist: "No, how are you really feeling?"
Meanwhile, cancer diagnosis notwithstanding, life with her husband Paul, her co-pastor at First Baptist Church of Ann Arbor since 2001, and twin teenage sons continues in all of the normal ways.
In the abstract, if asked what they would do if given a short time to live, people might say they'd travel the world or spend every minute with their family. But for Duke, the uncertainty of the future is more than just a thought experiment — it's made clear, in exquisite detail, practical concerns patients facing uncertainty may want to consider.
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"You're not going to just go travel or spend every waking hour with family," she says. "You're going to do things like make sure all of your digital passwords are available for those who will need them. You're going to make sure that your children and your husband know how to clean the kitchen the right way, and where the dogs' heartworm pills are. You're going to make sure your husband knows how to add money to the kids' lunch accounts and you're going to make sure your will is up-to-date.
"I mean, you're just going to do all these really practical, important things to take care of the people you love," she continues. "You're going to make sure that they know the things that they need to know — whether that's financial information or passwords, or stories and memories you want to pass on to them. And then, if there's time and money for travel, you'll do that too, but that other stuff is more important than you'd imagine.