Spiritual Journey Beings After the Cure

When treatment ends, patients with cancer combat challenges cancer
Billy Johnston of Mount Vernon, Ill., rings a bell recently, signaling the end of his prostate cancer treatment at Siteman Cancer Center at Barnes-Jewish Hospital. Johnston received the last of his radiation doses and was given a round of applause as he ringed the bell. (Robert Cohen/P-D)
By Cynthia Billhartz Gregorian
ST. LOUIS POST-DISPATCH
03/11/2010

Billy Johnston had his 43rd and final radiation treatment for prostate cancer early one recent morning.

Afterward, he earnestly thanked his doctor, the nurse practitioner, the receptionist and just about any other staff member he could find in the radiation oncology department at Siteman Cancer Center at Barnes-Jewish Hospital.

Then Johnston walked across the waiting room and rang a brass bell. Other patients clapped and cheered: one of their brethren had reached the finish line.

Five days a week, for eight weeks, Johnston, 75, made the 165-mile round trip from his home in Mount Vernon, Ill., to St. Louis for the treatments.
GET MORE HEALTH & FITNESS NEWS
bullet Check out stories, photos, multimedia and more
bullet Check out the People's Pharmacy


That time on the road wasn't so bad, he said, but the treatments were making him tired. Now he could get strong again and go back to work for his brother's car auction business.

"I don't want to sit around and get all stoved up," he said, referring to the stiffness that can set in with age.

Lisa A. Facer remembers how good it felt to ring the brass bell in the medical oncology department at the Siteman Center in West County when she finished six months of chemotherapy. She still has a picture of that moment hanging on her refrigerator.

When Facer, 54, of St. Charles, moved on to breast cancer treatments at the radiation oncology department at the St. Louis site, she was disappointed to find no bell for the patients.

So she bought them one.

"They've got to have a bell in radiation, because finishing is one more thing that's done. Now you're on the way to the rest of your life," she said. She's since bought bells for two other Siteman oncology departments.

Finishing cancer treatments is highly emotional, Facer said. She and other cancer survivors report feeling a sense of accomplishment, relief and liberation.

They've made it through a long hard haul. Soon their depleted energy levels and weakened immune systems will rebound; their hair will grow back and their days will resume a normal rhythm.

WHAT NOW?

But that final treatment — and ringing that bell — prompts other emotions, too, such as fear and uncertainty.

Many patients find themselves asking: What now?

"When you lose the security of knowing that you're acting toward curing your cancer, it's really scary," said Barbara Platzer, 72, of Chesterfield, who finished treatments for ovarian cancer three years ago. "Every time I'd go for chemotherapy, I'd have a doctor looking at me and doing lab tests where I'd see that my (cancer antigen-125) numbers were improving. And that made me feel secure, like I had control over what was happening. I felt like we were actively killing the cancer."

Facer, who has an aggressive form of breast cancer called HER3, was certain she'd get regularly scheduled bone scans, CT scans and blood tests after her treatments.

Not so. There are bio-marker tests for prostate cancer but not most other types.

Breast cancer survivors are monitored with mammograms and MRIs.

"And that's the part that scares the hell out of me," Facer said. "When those detect anything, it's often more advanced."

Part of the challenge of living with cancer is figuring out how to move on with life and not think about it on a daily basis, she said. "But you know not every cancer cell is gone, and they could be waiting for a timely moment to recur."

Dr. Michael Naughton,a medical oncologist and assistant professor of medicine at Washington University, thinks a lot of the emotional coping that goes with a diagnosis is put on the back burner while patients are getting chemotherapy and radiation, because the treatments are so physically hard.

"Once they're done, they realize what they've just been through," he said. "They were geared up for the battle and when they finish, they let their guard down and their focus is now, 'Wow! What did I just go through and what's my future?' "

Naughton reminds them that we all live with risks; that a mortality table from an insurance actuary would show that the risk of dying of heart disease or stroke or a car accident is high, too.

"Our patients are just more acutely aware of their risk," he said. "But this isn't something to be preoccupied with. I tell them: You need to live your life, because that's why you went through all this to begin with."

It's not unusual, he said, for patients to get counseling and be put on anti-depressants after treatment. Or, they'll ask for other treatment options, such as maintenance therapy or a clinical trial. If there's a viable one that seems promising, he'll give it to them.

Naughton also talks to patients about things they can do that lower the risk of a recurrence, such exercising, eating a healthy diet, controlling their weight and avoiding risky behaviors such as smoking and excessive drinking. It helps them feel like they have some control, he said.

'CHART YOUR OWN COURSE'

After finishing radiation last year, Facer participated in a clinical trial of the chemotherapy drug, Tykerb, which comes in pill form. She now runs five days a week in a pool and eats strawberries or blueberries every day, because studies have shown that a phytonutrient in them called quercetin kills cancer cells.

"I also eat salmon or tuna three or four times a week (for Omega 3 fatty acids), and I'm trying to lose weight," she said. Marilyn Kuhn still feels the lymph nodes in her neck with her fingers every day. That's how she detected Stage 3 Lymphoma in 2006. It had already spread to her bone marrow, spleen and lymphatic system.

But Kuhn, 60, of Webster Groves, said she felt only relief and happiness the day she finished chemotherapy in May 2008.

She'd long ago swapped reading about Lymphoma for reading Eckhart Tolle's "The Power of Now: A Guide to Spiritual Enlightenment."

"If you buy into the statistics, it'll drive you crazy," Kuhn said. "So my motto became, 'Chart your own course.' I don't know what's going to happen to me. If I buy into the numbers either way, it wouldn't be a good thing .

Besides, she added, Tolle said "that once you start thinking about the future, you're making it up. It's not real."