News Column

He's fighting to live, but preparing to die

June 28, 2014

By Amy Flowers Umble, The Free Lance-Star, Fredericksburg, Va.

June 29--The light show began in the empty planetarium dome--waves of green, purple, blue danced in a circle around the four Chapins.

Stuart sat, with a blanket tucked over his shoulders.

The pain was fierce that day and it seemed he might not be able to dance.

The Lovin' Spoonful came over the speakers:

Come and talk of all the things we did today

Hear and laugh about our funny little ways

While we have a few minutes to breathe

Then I know that it's time you must leave

Stuart Chapin doesn't believe in resurrection. He believes in light.

The 54-year-old former English teacher often quotes a line from the movie "The Year of Living Dangerously"--"Add your light to the sum of light."

He's tried to live by those words. Now, he's trying to die by them, too. With a last-ditch cocktail of poisonous chemotherapy coursing through his veins, Stuart is coming to terms with the fact that he will lose his fight with cancer. His doctor says he'll be lucky to see December.

Stuart would rather see the northern lights, the light show that occurs naturally in polar locales including Alaska, Norway and Russia.

The phenomenon symbolizes the possibility that his light will continue to glow after his death. A trip to Alaska or Norway for a brief glimpse would be reassuring.

But he is weak from seven years of surgeries and potent medication. His kidneys are on the verge of failing. Travel is out of the question.

Stuart has just two last wishes--to dance under the northern lights with his wife and to spend as much time as possible with his children, who are 17 and 13.

"I've told my kids I will fight as long as I can," Stuart said. "But I will not make it."

DETERMINED TO FIGHT

In his early adulthood, Stuart fought pirates and zombies as a film and stage combat artist. He played a police officer in a movie named one of the 10 worst buddy cop films of all time.

Colorectal cancer, he assumed, would be just another enemy to defeat with carefully choreographed surgery, chemotherapy and radiation.

But the tumors kept returning. Stuart has a genetic mutation that makes it impossible to turn off the body's cancer cells.

After four years, Stuart and his wife, Vanessa, accepted that he might not prevail. They broke the news to their children, Liam and Katharine, who thought their father invincible despite his tumors.

CREATING A LEGACY

Stuart started to prepare for an afterlife by making a series of grand gestures to equip his family for life after his death.

He bought Katharine a white dress and walked her down a beach as friends and family cheered. He had the event videotaped, so Katharine will have the memento when she gets married and he isn't around to walk her down the aisle.

In the family's wooded backyard, Stuart built a two-story treehouse with a rope bridge, spiral staircase and skylight, hoping to give Katharine and Liam a tangible testament to his affection and a soothing place to grieve.

Stuart bought Vanessa a Burmese kitten, a $900 expense the family could ill afford as medical bills mounted. But Vanessa grew up with the friendly, exotic breed of cats as pets, and Stuart wanted her to find comfort when he is gone.

"I won't get to give her more birthday presents; this will be the last gift for my wife," he said.

The kitten, Kotik, has already taken to snuggling with Vanessa and helps her through the stress of caregiving.

Stuart also renovated the basement of the family's home--even as his disease progressed and made the work painful. He installed laminate flooring and floor-to-ceiling bookcases, and he remodeled a bathroom.

He views the basement as a final gift to his family, but friends suspect the project has kept him alive longer than doctors expected.

LETTERS OF LOVE

The most difficult preparations have been the love notes. Stuart hopes to leave a card for Vanessa to read each month until she turns 90 or so. Most of the cards contain sonnets celebrating their life together, from the romantic to the erotic to the prosaic.

"The object is not to create a shrine to me," Stuart said, "but to have a time once a month where she can renew a visit."

He has also written letters to his children to read on special occasions, such as weddings and births.

ELUSIVE ANSWERS

Even as he prepares for death, Stuart fights to live.

His seven surgeries have included a grueling 17-hour operation in December 2012. Doctors scraped his colon to remove even the smallest cancer cells, then introduced a warm solution of chemotherapy drugs directly into his body and removed his rectum.

The HIPEC procedure was supposed to give Stuart 10 more months of life. It's now been 19 months. He is rushing to finish his sonnets.

But Vanessa has not completely given up hope. When Stuart visits the oncologist, she hands him three-page lists of typed questions, including queries about other treatments.

But the couple's main question remains unanswered: When will Stuart die?

So far, the answers have been elusive. The best-case scenario--December--is a long shot.

ONE LAST DANCE

With time running out, Vanessa was determined to grant her husband's last wish.

"What I wanted most was to see the northern lights, to see evidence that the universe is mutable and that maybe my energy will somehow go on," Stuart said. "I hope I'm about to change instead of disappearing, even if it's into something as ephemeral as light."

With international travel out of the question, Vanessa started closer to home, calling planetariums within driving distance.

The director of the Maryland Science Center's planetarium offered to recreate the northern lights for the Chapins.

So Stuart crafted a playlist of songs, and the family headed to Baltimore.

Inside the planetarium, Vanessa gently leaned over Stuart and helped him to his feet. The couple began to sway together, encircled by shimmery lights.

Stuart sang to Vanessa, softly.

Sobbing, she joined him, "Go and beat your crazy head against the sky

"Try and see beyond the houses and your eyes

"It's okay to shoot the moon

"Darling be home soon"

Katharine slowly walked to her parents, joining them in swaying. Liam then approached. Stuart hugged his son, crying, "I love you so, so much."

Then, Stuart turned to the simulated sky, watched the lights frolic around him.

He raised his arms and said, "Wow!"

The music stopped. The lights faded.

Stuart hugged his family in the darkened room.

"Wow," he said again. "I have had moments of true delight in my life."

The family walked out of the dome and toward the light, Stuart leaning on Vanessa.

Amy Umble: 540/735-1973

aumble@freelancestar.com

CHAPIN HELPING OTHERS WITH HIS CANDIDNESS ON COLORECTAL CANCER

The Chapins' love story features a particularly pernicious villain. Colorectal cancer is the second deadliest cancer for both men and women.

But it is preventable about 90 percent of the time, said Dr. Richard Fortunado, a colorectal surgeon with Surgical Associates of Fredericksburg.

Stuart Chapin would fall into the 10 percent that isn't preventable--with no family history, he was younger than 50 when the tumors invaded his body.

Most people with no family history should receive a colonoscopy at 50, Fortunado said.

Chapin scheduled his first one early--at age 46--but ended up in the emergency room with severe abdominal cramps before his screening. Doctors discovered he had colorectal cancer.

The Stafford County resident decided right away to be open about the disease, putting graphic details on a blog he kept. Chapin jokes about his ostomy bag, calling it his fecal man-purse.

His open attitude may already have saved one friend's life. That friend had a colonoscopy after hearing the details of Chapin's cancer. The scan found pre-cancerous polyps, which were removed before they could form tumors.

Another friend, Pat Sabat, recently learned that she has colorectal cancer.

Chapin's wife, Vanessa, immediately emailed Sabat with referrals and advice, then followed with a folder filled with tips.

But more importantly, Sabat said, the Chapins have shown her how to fight cancer well.

"Cancer is not going to define my life, damn it," Sabat said. "Cancer didn't define that family's life. Words cannot express how much I have gotten from that family."

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(c)2014 The Free Lance-Star (Fredericksburg, Va.)

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Source: Free Lance-Star (Fredericksburg, VA)