Phyllis' EC Story

as told by her spouse/caregiver, Phil

The journal writings that follow were "chapters" 104 to 110 of a continuing story of our adventures since retirement. Phyllis is a very active senior, 5'-4", 115 lbs, age 69, living in California. Prior to her illness she would take frequent hikes and weight training. We were on a 10-day 130-mile kayak tour in Prince William Sound (Alaska) when she decided to do something about her difficulty swallowing.

Part 1—Instead of Nepal Part 2—Thirty-eight Days in Hell Part 3—Getting Back to Normal

Part 4—She's Skiing Again! Part 5—Back thru Hell Part 6—From Worse to Better

Instead of Nepal

We were signed up for a 3-week Sierra Club trek in Nepal during October 2004, but when we returned home from Alaska Phyllis was determined to find out why she was feeling pressure and pain in her chest. She was also having trouble getting food to go down.

Her doctor thought she needed to have her esophagus dilated, so she scheduled the procedure for Sept. 14. The gastroenterologist (Dr. Bhogal) looked down her esophagus with a scope and said, "Oh-oh, she's not going to Nepal!" He took a biopsy of what he found and sent her for a CT scan. We waited a few days for the first doctor to call us to discuss the results of the procedures, then decided to go up to Bishop and continue our hiking in preparation for Nepal. We didn't know how serious her condition was.

We took three strenuous hikes in the White Mtns and Sierra, and checked our phone messages each day. Late in the week there was a message from the gastroenterologist asking if we had consulted with a cancer surgeon! Phyllis said we hadn't received any results and asked to meet with him the next day. So we took our trailer home and hurried on to Bakersfield for the appointment.

Dr. Bhogal said Phyllis definitely had a squamous cell cancer of the esophagus, and that we should be consulting with a cancer surgeon, oncologist, and/or radiologist. He said he would refer us to some specialists. Then we waited again, but days passed with no action.

We learned of a friend in the Bakersfield Model A Ford club that was going through the same cancer, so Phyllis talked to him about his treatment. He had chosen to work with a radiologist that didn't advise surgery unless the tumor was larger than 8 cm. We contacted that doctor and had the medical records sent there, but we couldn't get an appointment with him for two weeks.

Phyllis felt we should be moving faster, so she called the UCLA Medical Center. After talking with three people she reached a thoracic surgery group that scheduled an appointment for the next Monday. We scurried around to collect all of the medical information they wanted, but we felt encouraged that we were getting some expert help.

We dreaded the LA traffic, but we arrived early for the initial meeting with Dr. Mary Maish, cancer surgeon. She had studied the biopsy results and CT scan, and described candidly the surgery options. In the worst case, a complete removal of the esophagus and adjoining lymph nodes, with a reconstruction of the stomach to replace the esophagus. This would require several months of adjustment, but she would eventually return to a normal life.

A less severe situation might be corrected with laproscopic surgery or just radiation/chemotherapy, but based on what she knew at that time, the radical surgery was the more likely course. She ordered a series of tests to define Phyllis' condition precisely.

First, she had a pulmonary function test, which showed that her lungs were at 130% of normal for her age. She had a routine blood test and EKG. Then she had a dobutamine stress test. This is a stress EKG in which they raise your heart rate with a drug (dobutamine) rather than having you run on a treadmill. The technician stopped the test when Phyllis' heart rate was at 118 beats per minute. (When I have this test each year, they test my heart up to 160 beats per minute.) The test had shown an abnormal heartbeat.

The surgery group said they couldn't proceed with the operation unless they had an okay from a cardiologist, so we took the EKG results to a young female cardiologist. After talking with Phyllis about her active life, the doctor concluded that the stress EKG had a "false positive result."

Next Phyllis had a PET scan to further define the tumor in her esophagus, and Dr. Maish performed an endoscopy to see first hand what she would be removing. This was coupled with a sonogram, which showed that the tumor had invaded the inner three layers of the esophagus and one or two of the nearby lymph nodes.

The surgery was scheduled for October 27th. Dr. Maish said the operation might take six to eight hours, and that Phyllis would be hospitalized for a week to 10 days. Just before the surgery, she revised her estimate for the operation to ten hours! This was one of the most difficult surgical procedures possible.

We reported to the UCLA Medical Center early on the morning of Oct. 27th. After checking through Admissions, we were taken to a pre-surgery area where Phyllis changed into a hospital gown. We had a few minutes to chat before they wheeled the gurney down the hall toward the operating room. We said our goodbyes and then I left the hospital to spend the day at our trailer in Van Nuys.

In the late afternoon some of our kids and grandkids came to have dinner and await the phone call that the surgery was over. Dr. Maish called about 8 pm and said it had gone well, that the cancer was all within inner layers of the esophagus and two adjacent lymph nodes. She said Phyllis would be in recovery for a few hours, that I could see her about 11 pm. After the family members left, I drove back to UCLA and checked in with a late hour security desk. They said she was still in recovery and said the ICU nurse would call when she was moved there. At midnight I checked again and they said "oh yes, she's in BCU."

It was a shock to see her, unable to talk due to an air tube, obviously in great distress. I stayed a while, then went to the car and cried.

Part 2—Thirty-eight Days in Hell