• 2/12/2007
  • California, USA
  • Daniel Borenstein
  • Contra Costa Times (www.contracostatimes.com)

This is the first of a four part series.

“I think you are cured,” my oncologist told me April 24. It was just about a year after I had been diagnosed with cancer. I had endured chemotherapy and radiation treatment. I had traveled across the country for expert opinions to ensure I was making the right treatment decisions. I had nearly died and was hospitalized for 12 days when things went awry. But I had made it through.

This story has a happy ending. I’m going to live. As I’ve come to fully appreciate, we all have to go someday. But the cancer probably won’t kill me.

I was lucky. I had a type of cancer that could be cured with intense doses of chemotherapy and radiation. I had health insurance to pay hundreds of thousands of dollars of medical bills. I was married to a doctor who could educate me and assist me in making critical decisions. And I was personal friends with one of my oncologists, who was willing to use the latest treatments.

Nevertheless, it was a terrifying journey. I’ve never been so sick, so weak or so scared. I’ve never had to make so many difficult decisions.

I’m hardly alone. This year, an estimated 1.4 million new cancer cases will be diagnosed in this country, according to the American Cancer Society. The five-year survival rate for all cancers diagnosed from 1996 to 2002 was 66 percent.

Many who face cancer will learn what I and other patients have come to understand — that cancer treatment is evolving science. Doctors must work with incomplete data. At times, their advice is an educated guess. And when doctors give conflicting advice, it’s up to the patient to choose between them. But I’m getting ahead of myself. Let me take you back to the beginning. Because the truth is that my story could be almost anyone’s.

In 2003, I first noticed a cyst bulging from my neck. It was right under my collar edge. My primary-care doctor said I should have it checked. Using a computerized scanner, a radiologist located the mass and then stuck a needle in to drain the liquid.

My wife is a pathologist, the sort of doctor who looks at tissue samples and renders diagnoses on whether they are cancerous. Among the partners in her practice, it just happened to be her day at the hospital to look at cases like mine. Under the microscope, the clear yellowish liquid from my neck looked fine, she said. No cancer cells.

She warned me that I would probably need surgery some day to remove the cyst so it didn’t recur. There was no hurry. We were both relieved.

Sure enough, the cyst returned 14 months later, bulging from my neck and slightly larger this time. I postponed seeing a doctor. After all, it had been a benign mass, so there was no hurry.

Finally, I saw an ear, nose and throat surgeon, Abraham Hsieh. He felt the mass, told me he could remove it and, while he had me in the office, tried to drain the cyst again. This time, the liquid wasn’t clear yellow; it was dark blood.

He sent it to the pathology lab, where on the morning of April 11, 2005, one of my wife’s partners was looking at my slides under a microscope at the very moment my wife called in to the office.

I happened to be standing next to her in the kitchen. She became very quiet, listening carefully to the other end of the line. “Oh, no,” she said, but that was all.

Suddenly, I figured out what the conversation was about.

I sat down on the carpet in a corner of the dining room and began to cry. I had cancer and I was afraid I was going to die.

For those who want the technical name: squamous carcinoma.

To determine the extent of the disease, I had a body scan, for which I was injected with radioactive glucose. The test confirmed the cancer in a lymph node in my neck. The good news was that it did not show any other tumors.

The doctors agreed that the cancer in my neck that was visible on the scan was probably a metastasis, cancer cells that had migrated from the original site. There was probably a microscopic original site that hadn’t shown on the scan. In other words, just taking out the visible tumor wouldn’t cure me.

I faced my first major decision. As I quickly learned, doctors see therapy through the tools they know best. Simply put: Surgeons want to cut, doctors who specialize in chemotherapy see their drugs as the best solution, and radiation experts want to treat cancer with radioactive blasts.

Hsieh was a surgeon. So his first instinct was to remove my cancerous tumor. That made sense to me. But my wife started doing some Internet research and urged me to call our good friend Randy Oyer, a medical oncologist, the sort of doctor who specializes in chemotherapy.

When we finally connected, Randy was very clear. He didn’t want Hsieh to remove the cancerous mass. Randy wanted to leave it in place because it would be the best indicator of whether the chemo was working. Think of the lump as the canary in the mine shaft. Chemo travels throughout the body. If it could shrink the visible node, then it was probably also wiping out the original site and any other microscopic metastases.

I would still need surgery, but it would be much more limited: The doctors would explore the mouth and throat region with scopes in hopes of finding the original site; biopsy key areas; biopsy the cancerous lymph node in my neck for a better tissue sample to further confirm the cancer; and install a plastic and metal “port” in my chest through which the chemotherapy drugs would be administered. But the mass would stay.

The chemo would be a hard-core combination of drugs, Randy warned me. I would lose my hair. I would be very tired. Medications would control the nausea. I was warned that it would be a tough journey. But my prognosis was good.

Six days later, on a Monday afternoon, I checked into John Muir hospital for surgery. No more cancer spots were found, nor were doctors able to locate the original cancer site. I was under general anesthetic for about two hours and left the hospital six hours after I arrived.

The next morning, I began chemotherapy at Randy’s office. I was there for six hours as two drugs were dripped into me through a needle inserted into my port. I was sent home with a portable pump that fed a third drug into me around the clock for four days. Every 30 seconds, the small pump in the pouch strapped to my waist whirred as it dispensed the chemo. Just a tiny dose at a time. With each passing hour, my head felt a little lighter and my body weaker.

To prevent me from throwing up, I took a four-day course of Decadron, a steroid that left me wired, and a three-day course of Emend, an anti-nausea medication that retails for $117 per daily pill. If those didn’t do the trick, I had two other drugs, Ativan and Compazine, on hand as backups. Add to that drugs to control my blood pressure, protect my gut, help me sleep, thin my blood so that it didn’t clot while the port was in my body, and counteract the constipating effect of some of the meds.

I constructed a spreadsheet to track the medications.

When my cancer was first diagnosed, I didn’t understand how chemotherapy worked. I suspect my ignorance was fairly typical. I quickly learned that the chemo is like poison. The idea is to kill fast-growing cells in my body, to stop the cancer cells from multiplying. But the chemo also kills other fast-growing cells. That’s why my hair would fall out and why I would feel so sick. And that’s why my body’s ability to fight infection would be compromised.

By Thursday morning, I was severely weakened from the chemo. By Saturday, I was barely able to walk. I was so far gone that Randy sent me to John Muir hospital for an infusion of fluid. In retrospect, it appears, I might have been dehydrated and, more important, I was potassium depleted. Although I was drinking a lot of liquids like a good patient, my diuretics for hereditary high blood pressure were forcing the liquid right through and taking key minerals with it.

I would have two weeks off from the chemotherapy to regain my strength before starting the cycle over again. All told, there would be three cycles. Slowly, I began to recover from the first one. The following week, I started taking a drug to stimulate my appetite. A few days later, Randy took me out for dinner.

It was time alone with my doctor — time that I was privileged to have because he was also a good friend. I talked about my fears. He reassured me. He reached over and felt my neck. After just one round of chemotherapy, the tumor had shrunk significantly, he said. The quick response was a sign that the treatment was working and an indicator that I would probably respond well to the rest of the chemotherapy.

But that was just the beginning of my treatment.

(continued in Part 2)