Asheville woman writes a guide for terminally ill and their loved ones

The advice Kae Heckerman Mance has for the loved ones of someone who is terminally ill is almost humorously obvious: “Don’t send get well cards to terminally ill patients.” Instead, she says, write a note to let recipients know they’re in one’s thoughts. As a person who is living with terminal stage 4 breast cancer, Mance knows of what she speaks.

This suggestion, and many others, are in Mance’s self-published book Living Well to Die Well: A Guide to Terminally Ill People and Their Loved Ones.

Mance says she never intended to write a book, but a bout of insomnia in November led her there. “I woke up one morning at 4 a.m., and my mind was racing,” she recalls. “I felt like I needed to write those thoughts down, so I went to my office and started typing for about three hours. The same thing happened multiple nights.”

Mance, a retired special education teacher, reached out to her former principal who had written a book and asked for guidance; he assured her she had the makings of one. She collected notes, made outlines, wrote for two months and found a cover image of a sunset on Isle of Palms, S.C., where her family had vacationed for years. By Christmas 2022, the writing was completed, she edited it in January and the book became available for sale on Amazon at the end of that month. Mance hopes the final product helps individuals facing terminal illnesses and those close to them.

Not wasting a single day

Before her life-shattering diagnosis in July 2022, Mance had years of experience with other medical challenges.

“I have been through a lot,” she says. “I had an aneurysm that burst in the middle of my brain and was given just a 50-50 chance of surviving to get to surgery, then a 50-50 chance of surviving surgery. I’ve had a heart attack, multiple abdominal surgeries and breast cancer in 2009 that required a double-mastectomy, chemo, radiation and reconstruction.”

She also has intimate connections with terminal illnesses in loved ones. Her sister Marti died at age 47 years old in 1996, only 11 months after a diagnosis of renal cell carcinoma. Her brother Bill died in 2020 at age 70 after a four-year battle with rare spindle cell sarcoma.

“All three of us were raised to accept that death was part of life, but my sister and brother handled their own terminal diagnosis so differently,” Mance explains. “[My sister] was inexplicably in denial and as a result, didn’t make peace or say goodbye to anyone. My brother fought so hard, but when he knew there was nothing else he could do, he was relieved. He was so tired. But he still insisted on laughing and finding joy and not wasting a single day.”

These experiences have all informed Living Well to Die Well.

Initial shock and then determination

Mance’s own life is full of family. She and her husband, Andy Mance, moved from Charleston, S.C., to Asheville in January 2021. One son lives in Asheville, and another lives in Durham. She recently became a grandmother for the first time.

In the summer of 2022, Mance experienced worsening back pain, further aggravated by a hard landing from a zip line at an Asheville adventure park with her late sister’s granddaughter in July. After a CT scan at an imaging center revealed lesions on her spine, Mance was hospitalized for more tests. During five days of hospitalization, additional scans showed more lesions on her spine, two on her liver and multiple bone lesions throughout her body.

Mance’s oncologist, Dr. Rachel Raab, shared the diagnosis: triple-negative breast cancer, stage 4.  She had been in remission for 14 years, doing well overall and seeing an oncologist regularly. “I told Dr. Raab I wanted to know everything — that’s how I combat fear,” Mance says. “I asked her if there was any chance of remission, and she said no.”

Mance immediately determined she was not willing to endure terminal cancer being constantly ill. She had undergone intravenous chemotherapy previously, but at 69 years old, she knew she wouldn’t endure it again to extend her life by months instead of years. “There is a point when the treatment is worse than the disease,” she explains. Mance did have radiation for about two weeks on her spine, which was helpful, and she currently receives a monthly shot to strengthen her bones. She started oral chemotherapy in September, but it made her feel sick, so she stopped.

She adopted advice she received from longtime friend Dr. Rob Pennington, whose doctorate was in psychology. Diagnosed with stage 4 pancreatic cancer, Pennington never lost his positive attitude, even facing his inevitable death, Mance says. Upon her own diagnosis, he shared two bits of wisdom: “You can’t control what is happening to you, but you can control your response to it” and “When you find yourself in a perfectly miserable situation, why make it worse by being perfectly miserable?”

Mance determined to take those statements as her mantras. “The first time I had cancer I was so scared — I felt like I had no control and just did whatever I was told to do,” she explains. “Now, knowing what the outcome will be, I determined I would be involved in my care and make the decisions. Dr. Raab could not give me a timeline but said, ‘Let’s get you to your 70th birthday.’” Mance and her family celebrated her 70th in April.  

Writing a book

Facing her terminal illness, Mance revived what she calls the Mance Medical Updates; they’re similar to the holiday card letters people send but with medical news and family photos. She writes and emails those updates to about 150 people. Mance created an end-of-life binder for her family with every kind of information they would need for her death and end-of-life preparations. She has written her obituary, chosen the photo she wants used, planned her end-of-life service and enlisted a group of friends who will take responsibility for setting up the reception at the house and cleaning up afterward.

Those tasks and talks with her minister, the Rev. Sara Wilcox at Land of the Sky United Church of Christ in Asheville, led Mance to partner with Wilcox for a six-week course last fall, which they called “Living to Die Well.” About two dozen people attended in person and via Zoom. And all of this information — the course, her Mance Medical Updates, her end-of-life binder — was incorporated into Living Well to Die Well the book.

Mance says she knows she doesn’t have a long time left. She and her husband visited The Center for Conscious Living & Dying in Swannanoa and researched palliative care and hospice. They’re hopeful she can have those experiences at home.

“Dying is a big thing, and I want the details of it to be as easy as possible on my family as it can be,” Mance says. “I want us to spend the remaining time I have laughing and living, being together and saying goodbye, and then I want them to have time to grieve. There is no perfect death, but we can have a good death.”