Coping with Cancer: A Journey and a Place to Chill at Kokolulu
By Cynthia Sweeney
He is a professional counselor who has traveled the world giving workshops in stress reduction using techniques such as acupressure and massage. He also spent 20 years studying qigong with a Chinese monk.
She is an oncology nurse and cancer survivor, who also cared for her former husband for 12 years before he succumbed to a rare form of cancer.
Together, they found their purpose—their kuleana—in creating a cancer retreat center on seven beautiful acres in Hawi. Lew Whitney and Karin Cooke believe it is their responsibility to share their knowledge and experience with others, and that’s what they do at Kokolulu.
“We have all these skills. What use is this amassed wisdom if not to be shared? It’s what life is about,” Lew says.
When someone is diagnosed with cancer, his or her life is changed forever. First of all, being in the thick of cancer treatment is like being on a hamster wheel, Karin explains. Your doctor’s office starts making appointments for you. Your family is on your case. And everyone comes out of the woodwork with a cure. The appointments, the treatments, the missed work, the insurance company, the stress—what are your alternatives and how do you sort through that mess? You forget that there are things you can do for yourself.
“We help people navigate the system and know what else is out there,” Karin explains. “You need to take responsibility for your own health. You need to take an active role in your healing. At the retreat we ask, ‘What kind of tools can you use on your cancer journey?’”
Karin, the quieter member of the duo, is a research diva. If she doesn’t know the answer to something, she will find it. She even uses a PowerPoint presentation during the retreat to show actual cancer and immune cells.
Lew answers calls and emails every day from people wanting to know more about the retreat. That call, he says, is akin to someone with a drinking problem asking for help. He knows it takes tremendous courage and tries to be as gentle as possible.
“People come (to Kokolulu) in different shapes and sizes. Some come right after their diagnosis. Some come for help in making a decision. We give people tools and teach skills. There is not a one-size-fits-all,” Lew says. “We don’t talk people into anything. We’re brainstorming for possible outcomes.”
Kokolulu is a joining of their nicknames, Lew Lew and Koko, and it means “calm blood” in Hawaiian. It’s a place away from the doctors, the hospitals, the insurance company and sometimes the family. Lew quotes Einstein, “You can’t heal an issue in the same environment it was created.”
Retreats are usually conducted in groups, a week at a time. Individual retreats last as long as a month. (“We have a lot to share. A week is just the CliffsNotes,” Lew says) Kokolulu has room for eight guests at any one time. Lew and Karin grow an organic garden, as nutrition is part of the program. With the assistance of local chefs, French-trained Doug Seymour and Chaba’s Thai food, all meals are taken at the retreat. Seymour is also a cancer survivor—cancer of the tongue—and is now a chef without taste buds. His sense of smell, however, is incredible, Karin says.
Lew and Karin originally envisioned Kokolulu as an after-care retreat. As it turns out, however, 90 percent of the people that come here are in the full throes of cancer treatment.
Along with taking responsibility for their health, people need to believe in the decisions they make about their treatment. One of the tools Karin and Lew teach is guided imagery. If you decide to have chemotherapy, be 100 percent behind that decision. Watch that chemo being pumped into you with love and healing.
“The mind is so powerful,” Karin explains. “When you are sitting there getting an infusion (chemotherapy) you can make that experience transformative if you can guide those chemicals with your mind to go into your body for the highest good.”
On an island where natural beauty surrounds us, Kokolulu is one of those places where you can set aside your daily demands, sit on the large, shady lanai, look out to the ocean and, in the company of sympathetic friends, let the tears flow and the laughter erupt. As Karin explains, cancer survivors share an experience complete with its
own language.
“People who have been thrown into cancer sit in the dark night of the soul. What is this all for? What is my purpose now?” Karin says, speaking first-hand. “You’re never the same person. It changes you forever. You’re different, and people treat you differently. You have new wisdom. You don’t go through this without a reason.”
Karin married her high school sweetheart, David Cooke, and they had two daughters before he was diagnosed with a rare form of cancer, Hodgkin’s Lymphoma, and given three to four months to live. Karin was his caregiver and primary support person for 12 years, until the cancer eventually took his life.
When Karin met Lew a year later, she was a very serious person. “Make no appointments, have no disappointments” was her motto.
“My goal was to learn how to laugh again,” she says.
Lew was exactly the right person.
“I was ‘called’ to meet her. I really, really believe that,” says Lew, who showed up on their first date with a trunk full of various bottles of blowing bubbles.
After a few years together, however, Karin found out she herself had cervical cancer. For six years her doctor had been giving her false reports on her pap smears, which had all been irregular. Though angry, she avoided litigation, seeing what it had done to a friend who went the lawsuit route and died from the stress.
But there were no cancer retreats at that time. So Karin booked herself an isolated cabin on the Columbia River Gorge and created her own cancer retreat.
“I screamed, I cried, and by the time I left I was grounded,” she said.
Karin’s decision was to have a complete hysterectomy She has now been cancer-free for 12 years.
“After the cancer goes into remission, every little thing that goes wrong in your body freaks you out. There is always the question, ‘is it really gone?” she says.
Karin points out that healing does not mean curing. And while the word is forbidden in conventional medical jargon, she considers herself “cured.”
“Attitude. The recipe for surviving a cancer diagnosis is attitude, believing in some kind of higher power, setting outrageous goals and achieving them,” Karin says. “Something to strive for that keeps you going. What is it that survivors have in common? Everyone has faith in something—that core drive that exists and says, ‘I’m not going to quit.’”
Francine and Laurie, 9/11 First Responders
September 11, 2001. More than 500 New York police officers, fire fighters—“9/11 First Responders”—lost their lives that day along with 3,000 other victims who were in the World Trade Centers when disaster hit. We remember the photos of the streets, buildings, sidewalks and people covered in ash and debris. For the next year, thousands of 9/11 First Responders sifted through that debris, looking for traces that could link to anyone lost in the tragedy, so families could put closure on the loss of their loved ones. During that time, 9/11 First Responders were exposed to immeasurable toxins. As of November 2006, according to The Village Voice newspaper, 75 percent of these 9/11 First Responders have experienced serious illnesses—many have cancer.
Francine and Laurie are detectives with the New York Police Dept. (NYPD) and are 9/11 First Responders. These are tough women who do not hesitate to put a gun in a perpetrator’s face. They were diagnosed with cancer. They contacted Kokolulu in the spring of 2011 and attended one of Kokolulu’s week-long group cancer retreats along with other Big Island residents.
“Their stories (of 9/11) were amazing and disturbing. They were breathing toxic dust for weeks and weeks,” Karin says.
And there is anger at so many politics in the way of providing healing and treatment. But at Kokolulu, far away from the big city, Francine and Laurie were able to cry and scream and tell their stories.
Meet Franya, Mother of Three
Franya Berkman came to Kokolulu the first week in January 2012 from Portland, Oregon. Franya is married and has three children under the age of six. She has been diagnosed with stage-four breast cancer. Before she came to Kokolulu, Franya described herself as “heavy, fearful, anxious, wiped out, carrying toxic energy.” Two weeks later, Franya left the Big Island feeling “balanced, light, optimistic, in touch with Source, calm.”
Lew explained that Franya’s comments are typical of cancer guests who have been coming to Kokolulu over the last seven years. When she came, Franya was physically withdrawn, confused and feeling overwhelmed.
“I wish you could have seen Franya’s face when she arrived at Kokolulu and then the difference on the last day here. It was like night and day,” Lew said. “She was so full of life.”
A Place to Chill
Kokolulu operates as a 501c3 non-profit organization. Karin and Lew have not taken a penny for the seven years they have been in operation. No one on the island is turned away and, although there is a deposit, 95 percent of those who come to the retreat do not pay anything.
“This is a place to chill and tell your story,” Karin said. “We offer education, but the bottom line is this is a retreat and there is plenty of time here to do that.” ❖
Contact Lew and Karin at 808.889.9893 or kokolulu.org.
Contact writer Cynthia Sweeney at sweeneywrites@yahoo.com.
