Surrender, followed by a miracle

2009-04-05T00:00:00Z Surrender, followed by a miracleMELANIE CONKLIN mconklin@madison.com 608-252-6187 madison.com

Eight years ago, a doctor told Karen Dennis it was time to get her affairs in order.

The carcinoid cancer that racked her body for nearly a decade had returned and metastasized. The single mother of three girls was in stage four, the final and most severe level.

The slow-growing cancer, which arises from endocrine cells scattered throughout the body, already had taken so much from the Sauk City woman.

Dennis fought hard - undergoing three surgeries that removed a third of her digestive tract, with staggering post-operative complications. She endured 63 scans, chemotherapy and even traveled to the Netherlands to undergo an intensive radioactive treatment straight into her bloodstream.

She tried traditional medicine, experimental medicine and alternative medicine. And still, she reached stage four. What happened next pushed Dennis' situation into the medical debate over the mind's role in healing.

\ Planned her death

Reeling from the news that she was going to die, Dennis did what the doctors suggested. She named guardians for her girls. She put her finances in order. She planned her funeral.

After time passed, she updated her will again. And again - all while continuing to have scans and intensive palliative care. She spent four years planning to die, and it took an emotional toll.

So in 2005, she sat in the Sauk City office of her primary physician, Dr. Tim Bartholow, and told him of a pivotal decision. She wanted to refuse further treatment.

"I didn't see the point in all these scans and diagnostic work when there's no remedy," Dennis said. "There's anxiety that accompanies all this testing - not only for me, but for my family and friends. I told Tim, I'm feeling pretty good right now, and I just want to be that way for as long as I can."

Then she asked the doctor she had grown to deeply trust: "Do you think I'm crazy?"

Bartholow was silent for a very long time.

"No," he finally said. "I think you're wise."

He grabbed a piece of paper and wrote a prescription: "You have my permission not to accept your diagnosis. You have my permission not to accept your prognosis. Go celebrate the miracles in your life."

So she walked away from the cancer that had dominated her life for 13 years.

"I realized that I had become completely and totally defined by my illness," Dennis said. "I was able to redefine myself, and I think that's when I began to heal."

\ Not dead yet

Two years passed, and Dennis raised her daughters and lived her life - without additional medical care.

By January 2007, the fact that she was still collecting disability payments sparked governmental notice.

"I got a very carefully worded letter from the Social Security Administration, but basically reduced to its essence, it said, 'How come you aren't dead yet?'" Dennis said. "They wanted me to have another scan to update my status."

The best Dennis hoped to hear was that nothing had changed. She was totally unprepared for what the scans showed.

There she was, sitting in the same exam room where she had been told to get her affairs in order. The oncologist came in and told her: "You are not a cancer patient any more."

After rejoicing, Dennis was left struggling with what this meant and even how to label it: A cure? A miracle? Spontaneous remission?

"I realized in that moment that whatever part of this miracle was influenced by me - and not luck or divine intervention - my getting well was a consequence of me once again inhabiting my body and trusting it. And I did that when I had exhausted every other option."

She felt elated. She felt blessed. And she felt guilty. Dennis wondered why she was the one to beat the odds.

There are no statistics for her cancer; Dennis was told at diagnosis that she was only the 31st reported case worldwide. Dennis said the best estimate of the odds of spontaneous remission from any stage four metastatic cancer are one in up to 100,000. But there is no registry of spontaneous remission, something Dennis wants to see change.

\ Now in 'stage five'

The result of Dennis' emotional struggle was a mission to help other cancer patients.

"I knew I had to write a book," she said. "There are thousands of books on treatments, but I wanted to share what you can do for yourself and learn from yourself."

She's writing the book and leading Healing Circle classes for cancer patients in Prairie du Sac and Lake Delton. And she's given both her book and her situation a new name: Stage Five.

In her eight-week classes, a new round of which starts this week, they discuss transcending fear. Participants write a journal, meditate and talk about nutrition. She encourages them to choose doctors who meet their needs and are a good fit with their personalities. She urges them to ask questions about their care.

And they talk about how more and more people are living with cancer long term and how you can only rally and fight for so long. According to the National Cancer Institute, more than 11 million people in the United States live with cancer.

"I've seen every combination of attitudes, prognosis and results. There isn't a one-fits-all," Dennis said. "You've got to find the one that is you."

Barb Griffin of Reedsburg, who has a rare breast cancer, called Dennis' class a gift.

"The thought of having someone saying they survived stage four and moved on to stage five is extremely encouraging," Griffin said. "She's a normal person, not someone who has been studying under the Dalai Lama for 20 years. Karen is a natural researcher and talks about not being bullied by a doctor or a profession. I hope to God she lives forever so she can reach more and more people."

Another class member, Joan Weiss of Prairie du Sac, agreed: "She's developed a whole new philosophy of what to do when everything else fails. She shares how to go back to the drawing board."

Her class is open to anyone but directed at people who are dealing with a life-threatening illness.

"I tell people that based on 15 years as a cancer patient, it's my goal to teach them the useful things that happened along the way," Dennis said. "I'm acting as a guide to help people line up with their own bodies. I don't have a magic potion, but what I learned is that healing comes from within and it's teachable."

\ Victory in surrender

Bartholow, now a senior vice president with the Wisconsin Medical Society, plans to write the foreword for Dennis' book because he believes a collaborative physician-patient relationship improves comfort and healing.

He said protecting that relationship and exploring mental powers of healing is a looming and likely tense debate in the medical community.

"It is my belief that the patient has the power, sometimes restrained or timid, to advance their own health," Bartholow said. "The physician's role is limited to coach or cheerleader, but certainly not the 'giver of health.' We need to say, 'You're right. It's yours to choose.'"

He recalls the moment Dennis did just that. "I could see that medicine hadn't brought her any hope," Bartholow said.

Dennis' situation attracted the notice of Marc Ian Barasch, author of Remarkable Recoveries and an expert on mind-body connections in healing, who has cited Dennis' case in his writing.

"I have often seen, in cases of what I call 'remarkable recovery,' a profound shift in attitude toward life," Barasch said. But he added the strong caution that "it would be absurd to say that anyone with cancer can just change their mind and be healed."

"... Though these unexplained cures can be proven to occur, no one knows how often, and how or whether they can be replicated," Barasch said. "Remarkable recoveries must be approached as rare and as-yet unexplained phenomena."

Dr. John Niederhuber, who was Dennis' surgeon at UW Health and later became director of the National Cancer Institute, responded to her news of the spontaneous remission with a letter in April 2007.

"I do not have a ready explanation for the miraculous recovery you have experienced," he wrote her. "Because of cancer's complex nature, and the uniqueness of each individual affected by the disease, unexpected cures can rarely be attributed to any one factor..."

Dennis, who is now 52 and lives in Baraboo, started her battle with cancer when she was 35 years old. She got the news over the phone, while she was at home nursing her youngest child, then 18 months old.

Now her daughters are grown and she has four grandchildren.

She cites her relationships with Bartholow and Niederhuber as instrumental in allowing her to recover rather than taking "an inevitable march toward my prognosis."

Her dream is that more people reach Stage Five.

"I look back on this now, and after 13 years of gritting my teeth and desperately trying to hang on and not be afraid, all I got for my effort was more and more cancer. So my strategy in the end was: Let it come and get me - I surrender," she said.

"But in the meantime, I'm going to have a lot of fun and do all the things that make my heart sing because these are my final days. I never dreamed it would have any impact on my outcome, but it did."

Dennis' next round of classes begins April 8 in Sauk Prairie (608-477-0591) and April 21 at the Lake Delton Integrative Medical Clinic (608-254-5400).

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