In Sickness and in Health

Aug. 3, 2005 — -- In May 2004, Amanda Costanzo stood in front of friends and family members and vowed to love Todd McGovern for better and for worse, in sickness and in health.

She just didn't think those promises would be tested so soon. Six weeks after their wedding, Todd was diagnosed with advanced colon cancer and given six months to live. He was 30 years old.

"I couldn't believe that we had just been married in a church in May and in six months I would be planning his funeral in the same church," Amanda, 29, said.

Amanda and Todd refused to accept the diagnosis. Both left their jobs to focus on Todd's fight, and a year later he was declared cancer-free -- for now.

While all the struggles of the previous year paid off, the victory did not come without a price. In addition to Todd's physical struggles and the horrendous side effects of aggressive chemotherapy, Amanda also learned that cancer is not an individual illness; it affects entire families. With so many responsibilities to focus on, Amanda lost sight of herself.

Amanda became Todd's caregiver, assuming the role of advocate/motivator/dietician, and even starting a foundation devoted to recovery from cancer through recreation. Her non-profit, SEASIT, will provide cancer patients with some of the recreational opportunities that helped Todd so much during his intense chemotherapy treatments. It will also provide those opportunities for the caregiver, to help them take their mind off the cancer for a few hours a day as well.

Her passion for SEASIT's mission is so strong, Amanda is determined to keep the organization going, even if there comes a day when she is no longer working side-by-side with her husband, but instead carrying on the work in honor of his memory.

Amanda Costanzo and Todd McGovern grew up less than an hour apart from each other in New Jersey and were two years apart at the same boarding school in Connecticut. Amanda's teenage pen pal still has a letter from her friend's sophomore year, in which Amanda wrote about wanting to ask a cute senior named Todd McGovern to the dance, but being too shy to do so. It wasn't until a chance encounter in a bar in the summer in 2002 that they hit it off.

Within six months, Todd had moved into Amanda's apartment in Boston, within eight months they were engaged, and in the summer of 2004, Todd and Amanda entered their wedding reception with their hands clasped and raised over their heads, as if in a sign of victory.

Amanda looked like she was torn from a page in a bridal magazine -- her long blond hair flowing loosely past her tanned, petite shoulders. Todd loomed protectively over his new bride, the joy in his smile coupled with a resolve to provide his new wife with everything she could ever want for the rest of their lives.

In the weeks following their wedding, Amanda became the first teacher named to the board of directors at the French-American International School in Boston, and Todd landed a major deal for his recruiting firm. Both were on the fast track in their respective fields and thrilled to be doing it together.

While Amanda was visiting her parents in New Jersey, she got a disturbing call from Todd. He had experienced heavy bleeding when he used the bathroom and was heading to the emergency room.

On July 18, 2004, Amanda found herself in a tiny gray doctor's office in a Massachusetts hospital, listening to a man in a white coat tell her the future she imagined with her husband would never be.

Tears splashed onto her day planner as she tried to scribble down medical terms that would become all too familiar in the upcoming months.

"I remember being in the elevator with my parents the next day and I was crying and I said, 'I can't believe I'm losing the love of my life,' " Amanda said.

Todd, an athlete who had never smoked or been much of a drinker, had been diagnosed with Stage IV colon cancer at the age of 30. In stage IV, the cancer has spread to other parts of the body. There is only a 3 percent chance of reaching the five-year survival mark.

According to the American Cancer Foundation, colon cancer is the third-most-common cancer in men and women, and the second leading cause of cancer death in the United States, with more than 50,000 dying from the disease each year. More than 90 percent of those diagnosed with colon cancer are over the age of 50.

Doctors gave Todd about six months to live, no more than two years.

But Todd, a lifelong competitor and two-sport college athlete, was defiant. He and Amanda came up with a radical four-prong treatment strategy, encompassing aggressive chemotherapy, alternative therapies such as yoga and acupuncture, exercise and diet and mental health.

It was obvious Todd couldn't continue working, but Amanda decided to leave work too, making Todd her job. They moved in with Amanda's parents in New Jersey and lived on Todd's disability payments.

In the couple's mind, maintaining a positive attitude was a major key to success. So, in order to lift his spirits and keep all of their friends in the loop, Amanda came up with the idea of "Team Gov," an ice-hockey themed Web site dedicated to Todd's fight. On Gov21.com, "Play by Play" kept friends updated on Todd's progress, "In the Locker Room" showed off pictures of Todd from childhood to his wedding, "Game Day Speeches" contained inspirational quotes, and "The Opponent" told their friends exactly what kind of cancer and prognosis Todd was facing.

Amanda treated each play-by-play as the buildup to Todd's clean bill of health, when they could "raise the cup in victory."

The plan was to throw a party in honor of Todd a year after his original diagnosis, and invite all of Todd and Amanda's supporters, the players on "Team Gov." But over the course of Todd's treatment, "Team Gov" took on an entirely different life force.

"I couldn't find any outlets for me," Todd said. "There were lots of things for pediatric cancer patients, which is great, but there wasn't anything for a healthy, young adult."

Amanda felt the same way. There were support groups for family members of cancer patients, but nothing that fit her personality.

Amanda and Todd created their own outlets, and it turned out that something as simple as riding a bike and taking their minds off the treatments and insurance bills and the uncertainty of the future, was the best therapy of all. Amanda and Todd rode bikes together wherever they went, practiced yoga together and walked on the beach collecting sea glass each morning, a simple task that became harder for Todd as the chemotherapy took its toll.

In a way, dealing with an illness they never thought they would face until old age, if at all, gave them a child-like view of the world.

Recreation was so helpful for the couple, they wanted to share it with others. That's when they founded SEASIT, named to reflect Todd and Amanda's determination to seize each day no matter how horrible the side effects of cancer and the ocean which brought them so much comfort during Todd's treatment.

The mission reflects those same values.

"I met a doctor who also did acupuncture and one day she told me, 'You can live a little each day or die a little each day,' " said Todd. "I don't think she realized how much that affected me. That was my turning point."

SEASIT's mission is to help cancer patients live a little each day by providing resources to participate in recreational activity, whether it be bike riding or painting. The non-profit will provide these services to the caregiver, as well, because, as Amanda can attest, it is easy for the caregiver to die a little each day rather than live if there is no support.

To read more about SEASIT, visit www.seasit.org.

"Being the spouse, I often felt like everyone was looking out for Todd and making sure he was taking his medicine and going to the doctor, and that was good," Amanda said. "But there were times when I wish someone would have said, 'Hey Amanda, here's your lunch.'"

Amanda is not alone.

According to the National Family Caregivers Association, more than 50 million Americans provide care for a chronically ill, disabled or aged family member or friend every year.

The value of the services family caregivers provide for "free" is estimated to be worth $257 billion a year. But the price is often paid by the caregiver in the form of their own poor health, stress, depression and anxiety.

"Stress is as high on the caregiver as it is on the patient," said Dr. Jimmie Holland of Memorial Sloan-Kettering Cancer Center in New York. She advocates for health policies to take into account the experience of caregivers. "There's good evidence the caregiver neglects their own health … They have more illness due to stress, which probably leads to death."

Amanda dropped several pounds, the physical tolls of caregiving apparent even if she hid the mental stresses well.

"I felt like I was aimlessly going through this in slow motion even though on the outside it looked like I was going through this with superior focus," she said.

In February, Todd underwent an experimental chemotherapy treatment in which a surgeon inserted a heated chemotherapy infusion directly into the abdominal cavity lining for about an hour and a half.

The surgery was a success, but Todd's recovery was harder than expected.

"The hardest part was that on the days Todd felt really sick, there was nothing I could do to make him feel better. That must be the way it is when you have a child," Amanda said. "It was like I lost my best friend because Todd was too sick to get out of bed."

After the surgery, Amanda decided to start taking yoga classes again.

"Even though I couldn't afford it, I just put it on my credit card," Amanda said. "I needed to take time for myself. That really changed things for me."