The Scare of My Life

Always the advocate, Debra has written (with the expert assistance of Tom Curtis) for publication the following first-person account of her recent life-threatening illness:

The Scare of My Life
Why You Should Think Seriously About Getting Your Health Care at UTMB

It started with some bad clams I ate during a visit to Maryland—or so we assumed. In fact, my diagnosis was far more serious than the hepatitis A that my husband Bob and I erroneously suspected I’d contracted. Still, with luck I may end up owing my survival to early diagnosis and a highly skilled surgeon. And I owe that to having decided a year ago to get my health care at a world-class academic medical center where well-trained and highly experienced physicians and surgeons diagnose and treat some of the most complex and terrifying medical problems human beings can face: UTMB in my new hometown of Galveston.

But I’m getting ahead of myself. After returning from Maryland, I threw my back out exercising too intensely in a Pilates class and was bedridden for several days. I called my primary care physician, Dr. Tom Blackwell at UTMB, who prescribed medication and physical therapy. Later, I observed that my urine had turned a vivid orange, which I suspected was a side effect of the medicine. Still later, the physical therapist noted that my skin was turning yellowish. The next morning, a Saturday, when I came downstairs for breakfast, Bob said my eyes looked like they’d been colored yellow with a Day-Glo highlighter.

By now I had all the signs of hepatitis A—symptoms I recalled from decades ago when my hard-living best friend developed the disease. At this stage of my life, there was no chance that my own risk factors were related to sex, drugs, or rock-and-roll: Infected shellfish was the obvious suspect. Because that was my one hepatitis risk factor, and because there’s no treatment for hepatitis A, many, perhaps most, doctors probably would have advised me to just rest up and let the infection run its course.

But I wanted reassurance, and although it was the weekend, I paged Dr. Blackwell’s very competent and compassionate nurse, Tonya Arnold. She got back to me promptly and scheduled blood tests first thing Monday morning. That morning she even met me at the lab. While the hepatitis tests didn’t come back for days, the liver counts were available quickly.

Tonya called alerting me that my liver counts were abnormally high and that at Dr. Blackwell’s instruction she was arranging for an outpatient ultrasound examination Tuesday afternoon. As I was leaving the ultrasound lab in the Primary Care Clinic, and Tonya called my cell phone: Dr. Blackwell had already received the ultrasound and was going to admit me to the hospital that night for an endoscopic ultrasound and a battery of other tests including a CT scan.

Chillingly, the tests revealed a lentil-sized tumor on my ampulla of Vater, the area where the bile and pancreatic duct enter the duodenum. It was blocking the drainage from the gall bladder, bile ducts and whole biliary system into my stomach. Pancreatic cancer is usually fatal and not discovered until it has metastasized. The good news was that my tumor was small and apparently contained, and that its location had caused the symptoms that prompted early diagnosis.

The doctors recommended something called a Whipple operation, a complex procedure popularized by Dr. Alan Whipple in the 1930s that involves removing the head of the pancreas, part of the bile duct, the gallbladder and the duodenum. The procedure remained extremely risky into the 1970s, when up to 25 percent of patients at tertiary centers and up to 40 percent at general surgery centers died from the surgery. In recent years, however, the operation has become much safer, with a mortality rate of less than 4%, at least when it’s done at tertiary care centers where many of the procedures are performed by a select few surgeons.

In another stroke of good luck for me, UTMB has a Pancreatico-Biliary Surgery Center. Its leader, Dr. William H. Nealon, and Dr. Courtney M. Townsend, Jr., UTMB’s chair of surgery, had recruited Dr. Taylor S. Riall, a skilled pancreatico-biliary surgeon from Johns Hopkins University—a center recognized around the world for its expertise in this field—to join it. Dr. Riall has extensive experience in treating patients with cancer of the pancreas and has written many papers helping to define its treatment.

During my initial hospital stay, I met everyone who was expected to be involved in my surgery and post-operative care. While the whole team had stellar credentials and experience, I was especially impressed with my prospective surgeon, Dr. Riall.
Though she is young and petite in stature, her brilliance and personality filled my hospital room, and she exuded confidence. After a very, very serious discussion of what was proposed—Whipple operations are about as complicated as any surgery can be—she talked frankly about her experience level, where else the procedure is being done, where she studied, and, significantly, her mortality rate: less than 2%.

She and oncologist Dr. Avi Markowitz (who had been part of a group that invented the current chemotherapy for pancreatic cancer using the only drug approved by the FDA specifically for it) and radiation oncologist Dr. Ivan Kessel were very welcoming. They even offered to facilitate my getting second opinions from doctors at M.D. Anderson or any other U.S. hospital.

I went home from the hospital for a long weekend before the scheduled surgery. I promptly went online researching all the doctors who do the Whipple operation. Before I finished reading about all of Dr. Riall’s awards, accolades, publications, training and experience, I had exhausted myself. But I was convinced that I was in the best possible hands.

The surgery took place the following Tuesday. Immediately afterwards, my good friend Ann MacNaughton said that Dr. Riall told waiting friends and family that she had been able to “close” the incision an hour and a half sooner than scheduled because “she”—meaning me— “has beautiful anatomy.” Ann said they responded, “We know that” and Dr. Riall laughed and added, “She is text-book perfect inside.” The surgeons removed 21 lymph nodes, but only one of them turned out to be cancerous—so it’s possible that this was a surgical cure.

I recuperated for about a week in the hospital on the oncology ward, 6B. Medical students flocked to my room to offer thanks for my allowing them to watch a “textbook procedure.” I can’t say enough about the quality of the nurses: They were terrific—very professional, very human, and very caring on top of that. Now I’m regaining my strength and girding myself for the next steps—chemotherapy, then radiation, and then more chemo—a protocol that Dr. Markowitz said he would recommend to his adored wife, my friend Margo, if she had pancreatic cancer like mine.

In the seven years since Bob and I bought our house in Galveston and in the two years since we moved here, I have literally hundreds of friends and former constituents who have also moved to Galveston but who still make that grueling trip up the Gulf Freeway for their medical care. I would encourage them—no, I’d push them—to get their medical care at UTMB.

My own experience over recent weeks has taught me a crucial lesson: Talented generalist physicians like Dr. Blackwell and top-flight nurses like Tonya Arnold working at academic medical centers know to look beyond the obvious. And close at hand they have remarkably skilled and experienced colleagues who are leading specialists in a range of medical and surgical fields to whom they can refer their patients. Having a leading health sciences university and hospital with excellent doctors in a variety of specialties minutes from your door is an incredibly valuable resource—and one that someday might save your life.