05/15/05 — Grantham Couple lives with cancer

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Grantham Couple lives with cancer

By Phyllis Moore
Published in News on May 15, 2005 2:01 AM

GRANTHAM - Sandra Castle says she has been husband Jack's biggest cheerleader and caregiver since they met while working at Shepherd College in West Virginia 16 years ago. So when he was diagnosed with a rare form of cancer, her resolve to continue doing that only deepened.

The couple moved to Wayne County soon after Castle was diagnosed with leiomyosarcoma, found in the soft muscle tissue. They say it's a toss-up which has been the tougher battle, waging war against the disease or the real-life struggles that have accompanied it.

Since 1999, Castle has endured a dozen surgeries, 33 radiation treatments, four rounds of chemotherapy at Southeastern Medical Oncology Center and countless visits there for iron supplements through an IV. The medical bills last year alone topped $200,000, Mrs. Castle said.

Moving closer to family has been a blessing of support and comfort, the couple says, but there has been no shortage of challenges. The day before Christmas, Mrs. Castle was among a group of Wayne County magistrates who were dismissed from their duties.

In early April, she started a job as a social worker with Wayne County Social Services, juggling night hours to better accommodate her husband's needs.

Castle's cancer is unpredictable, often returning and requiring additional treatments and surgeries. On April 27, he was admitted to Wayne Memorial Hospital for another operation. His wife took time off from work, without pay, to be there. He was released from the hospital on Monday.

Mrs. Castle said she received a letter last weekend notifying her to attend a pre-disciplinary conference about her job. On Tuesday, she learned she was fired, she said, because "I can't reassure them that this won't happen again because of my husband's illness."

Judy Pelt, social services director, said that since it's a personnel matter, she can't discuss the particulars, but called it unfortunate.

"There were some extenuating circumstances," she said. "I'm really sorry it happened. It was an extremely difficult situation."

Legally, the Family Medical Leave Act is very clear: To be eligible for the benefits, employees must have been employed by the same company for at least 12 months; Mrs. Castle hadn't even been there one month.

There is a catch in her throat as she talks about having to go out and find another job. She is unwavering, though, that her decision to be on the front lines with her husband was the right one.

"We don't ever give up," she said. "We have a strong personal relationship; we talk about what's going on.

"He's very likely to die today, but at the same time, we have to enjoy the day, live as if he'll live forever."

The couple say they rely on their faith, family and friends to keep them going.

"We're probably on more prayer lists than anyone in the county," she said.

It is definitely a different lifestyle than the one they had before cancer invaded their lives, but the Castles work hard to keep daily life as stress-free as possible.

"I won't kid you," Castle says. "At times it bothers me a lot. I go from being a workaholic, working 60 to 70 hours a week, working right beside my wife, supervising people, having a million dollar budget ... to all that is gone."

While the list of what he can do has diminished with time, he says he tries not to dwell on the twists and turns his life has taken. He lives for today, hoping for more tomorrows.

"I'm terminal; I know that," he says. "When I work outside, I work for a little bit, come in and rest, go back to it.

"I just keep my goals in front of me, what I want to accomplish, and try to attain what I want."

When he is up to it, he works in the yard and renovates the couple's farmhouse. He also enjoys doing silk flower arrangements, macrame and anything having to do with Christmas. Holiday wreaths and crafts are sprinkled throughout the home.

"I think Christmas is magical," Castle says. "We keep some Christmas stuff up all the time."

There is also a bit of magic living right next door, in the form of the couple's 6-year-old great-nephew J.T. Bryan. Having no children of their own, the Castles say they have been blessed to live near Mrs. Castle's niece and her husband, Donna and Jeff Bryan.

"We take J.T. to little kids' movies and try to stay in touch with all the positive things in life," Mrs. Castle said.

Things like hope.

Mrs. Castle says her niece has tried to prepare J.T. for the inevitable, that Uncle Jack is sick and will one day be going to heaven.

"She didn't want J.T. to get scared," Castle explained. "So she's been preparing him for a long time.

"He doesn't talk about it at all; he listens. It's something he processes and understands."

How much he really grasped and the depth of his compassion were proven three weeks ago when little J.T. asked his mom if there was some way he could make some money.

"She was working outside," Castle said. "So, he worked with her for awhile, then asked if she thought he had earned a dollar.

"His mother said he had probably earned $2 and promised she would give him the money when his father got home. But she forgot.

"The next day, as she drove him to school, he said, 'Mommy, I need my $2.' 'You're going to school,' his mother said. 'You don't need it now.'"

But the youth was persistent, Castle said. Tearing up at the recollection, he urged his wife to finish the story.

"'I have to have it for Uncle Jack for school, for cancer care,'" was J.T.'s explanation, Mrs. Castle said, because Grantham School was raising money for Relay for Life.

Touched by the gesture, the couple says it is but one memory they cling to during their darkest hours.

"Sometimes you don't know why you're doing what you're doing," Castle says. "Later on, you realize that God has led you that way."

What started out as a move to ensure his wife would be near family and friends after he dies, has turned into a support system for them both. He says he has appreciated becoming closer to relatives as well as neighbors who have helped them through the rough spots.

"Your family is the people that care for you," he says.

At 55, Castle is not giving up yet. Despite having a recurrent Level 4 cancer and an initial prognosis that he might only have five years to live, he has surpassed that and not lost hope.

"My recovery and my will to continue fighting this comes from my relationship with my wife," he says, "She helps me. Just by being there, I get better."

Castle's cancer type is so rare, it is not covered in the research being done through funds raised by Relay for Life. Still, the couple support the cause. They have attended the opening ceremonies for the past three years and were there this weekend.

She wants people to remember as they walk the track, raise money for cancer research or do anything else to contribute to fighting this disease that there are families behind the numbers and the names on the luminary bags.

She wants volunteers to continue working even after the last dollar is in from this year's event.

"Think about why you are doing what you are doing," she wrote in a letter to participants. "What are your reasons for participating and what will your role be after the close of this year's ceremonies? Remember, cancer patients, survivors and caregivers fight this battle every day of every year. The greatest gift any individual can give is care and understanding."