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Doctor walks patient's path


In early July, Dr. Benjamin Carson was operating on a young patient when a nurse put a telephone to his ear. He listened calmly as a voice on the other end told the neurosurgeon, who had undergone a biopsy a few days earlier, that he suffered from an aggressive form of prostate cancer.

He continued to operate, putting his concerns aside until the surgery was completed. But in that moment, Ben Carson, physician, became Ben Carson, patient.

Last week, after cancer surgery and a nearly monthlong medical leave, the renowned Johns Hopkins doctor and author of inspirational books was back in the operating room.

He eased into a three-hour brain surgery on a 14-year-old girl with epilepsy. Later, he attended the board meeting of a local charity, examined a 2-year-old girl with spina bifida, treated four patients battling crippling facial pain, then jetted to San Diego to address a national convention of retirees.

"I feel tremendous," he says.

But in the time he spent resting at his pastoral home in northern Baltimore County, the boyish-looking surgeon said he had a rare chance to reflect on a work schedule that was too intense and on the curiously foreign experience of being seriously ill.

Though he has spent years treating and counseling children through their illnesses, Carson said he had never spent a day in a hospital sickbed. And though he is known as a doctor who brings compassion and prayer to the bedside, Carson never truly understood the out-of-control feeling that his patients must feel when they receive a grim diagnosis or experience severe pain.

Now, he does.

"I think I can identify a little bit more with being vulnerable, and why it becomes so important to really communicate with patients, to make them fully understand what's going on," said Carson.

While he hasn't undergone further treatment because he and his doctors believe his cancer was arrested, Carson, 50, is making some changes to safeguard his health and improve the quality of his life.

He's forsaken all meat and junk food - "no more sodas and chips and things like that" - and fashioned a diet of organic fruits and vegetables that he is now convinced bolsters the body's defenses against cancer, heart disease and other illnesses.

"Lots of salads, lettuce and tomatoes and cukes and carrots and beets and onions and things like that," said Carson, describing a regimen that has kept his wife, Candy, busy scouting local markets for the freshest produce.

And he vows to cut back on his demanding schedule. "I'm not going back to the same frenzied pace," Carson said between appointments last week.

Those who work with him say it might be difficult to keep him to his promise to shift gradually into his surgical schedule and carve some hours off his workweek. Carson, who leaves home about 6:30 each morning, said he would like simply to return home an hour earlier, say by 8 p.m.

It wasn't just his own illness that led him to this conclusion. Neurosurgeons, he said, die earlier than other doctors, perhaps because of the long hours and stress of their work.

The issue was tragically driven home Memorial Day weekend when Dr. Jeffery Williams, a fellow Hopkins neurosurgeon, died of a heart attack while exercising at the hospital's fitness center.

"It was totally out of the blue," said Carson. "He was 50 - we were the same age. There were so many people in neurosurgery who have died young, people I've known from other places. I was adding them up and doing the math."

Carson's diagnosis emerged slowly. Last year, a blood test taken during a routine physical showed that his PSA - a compound released by prostate cancer but also by a benign condition of the gland - was running higher than normal. It hadn't entered dangerous territory but was cause for concern.

Then, in the spring, a follow-up test revealed that the PSA (for prostate specific antigen) had reached 5.5 - half-again its previous level and past the reading of 4 that suggests the need for additional testing. Ultrasound provided hopeful evidence that the prostate was not unusually enlarged, so Carson went into his biopsy without greatly fearing the results.

But then he got that phone call confirming he had cancer.

"Later on, it really hit me," said Carson. "I thought, 'Wow, I've got cancer, a really high grade of cancer. And, wow, I could really die.'"

Carson said his wife, who shares his deep religious beliefs and involvement in the Seventh-day Adventist Church, took the news stoically, offering the assurance that God would not deliver anything that her husband could not handle.

"At first, it's a shock," Candy Carson said, recalling the moment. "Then, you realize that God has a purpose in everything, and if it's time for Ben to go, it's probably the best time. If not, then he has some other things for Ben to do here on Earth."

Whatever calm they experienced was soon shattered. On July 3, Carson underwent an MRI to see whether the cancer had spread beyond the prostate. Later that evening, he got the films and viewed them in his office.

What he saw terrified him.

His spine was riddled with spots, white on some films and dark on others, that to him were a sure sign that the cancer had traveled far beyond the prostate.

Though surgery often cures men whose cancer is confined to the gland, the outlook is notoriously poor for those whose cancer has spread.

"It was fairly traumatic," said Carson. What scared him wasn't death, he said, but the prospect of suffering spinal fractures and other painful conditions that might come first. He feared being confined to a wheelchair, dependent on others.

Carson silently worried for four days until he asked a spine surgeon, who was not involved in his care, to look at the images. The physician quickly relieved his worst fears - the spots were a benign pattern that he'd seen many times before.

From that point on, Carson said, he felt that he had nothing to worry about. But somehow, word of his illness had leaked beyond his circle of friends, family and colleagues and gotten horribly distorted. Phone calls and e-mails flooded the office.

"The first week was just horrendous," said Audrey Jones, who manages Carson's office. "People were getting the wrong information. He had bone cancer, brain cancer, spine cancer." Some callers had erroneously heard that he died.

Carson said he approached his Aug. 7 surgery without apprehension, confident that his case was being handled by the prostate surgeon he considers the world's best. Dr. Patrick Walsh, chief of urology at Hopkins, is widely known for high cure rates, and he invented a surgical technique that usually preserves urinary and sexual function.

After surgery, the pathology tests showed that the cancer was confined to the prostate gland, though Carson said the disease had come perilously close to bursting through the prostate wall.

Carson said he was treated supremely well in the hospital but he couldn't help monitoring and sometimes worrying about what was happening. There were times when he watched the intravenous drip and wondered whether it should be faster, times when he reviewed medications and wondered whether they were right.

He said he didn't interfere, except once when he suggested a medication to relieve some symptoms.

Carson said he realized more fully than ever that patients need to know what symptoms to expect after surgery, what pain they will experience, when it should end and why certain procedures are performed. As a doctor he knew much of this, but still felt strangely vulnerable being at the receiving end of treatment.

He was surprised that a day after surgery, he couldn't get out of bed by himself, walk unassisted or even bathe himself.

"Basically, it feels like you're at the mercy of a bunch of people," said Carson. "That's why it's so important to take time to explain [to patients] why they feel like they do, and if that's what should be expected."

"I've always done this, but I think I'm going to do it even more," he said.

Since coming back, he has tried to do that for his patients, while being easier on himself.

"I'm going to allow other people to do more," Carson said. "I'm going to recognize that the world was here before I was here and will be here after I'm gone. And I don't have to do everything."

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