Phyllis' EC Story

as told by her spouse/caregiver, Phil

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

From Worse to Better

Phyllis was transported to UCLA Medical Center by ambulance on Saturday, Oct 22. When Dr Mary Maish (her surgeon) returned on Monday things began to turn around. Tuesday we looked into the trachea and esoph-agus. (Dr Maish has allowed me to observe the process several times.) We could see some "pockets" in the wall of the reconstructed stomach, but no opening on the trachea side. But the good news was that there was no evidence of cancer! The chemo/radiation had cleaned it up beautifully. We were elated! Phyllis immediately got better. On Thursday they did a procedure to fill the pockets with "fibrin glue." The next day she was dis-charged and we drove back to our trailer in Bakersfield.

The following day we came home, where she has the therapy of dogs & cats. She would continue on tube-feeding for two months, then we'll return to look at the patches. If it's closed up she'll start taking liquids and soft food. It's a process we went thru last December/ January, so we're confident that she'll fully recover.

During that first weekend home we had another set-back. The leak between Phyllis' esophagus and trachea got reopened by a violent vomiting spell, so we returned to UCLA Med Center. The doctor scoped the passages and put in more fibrin glue. She got to feeling better and we took some good walks in the halls. We made sure of her tolerance of the tube-feeding and meds before we left for home.

During the initial weeks at home Phyllis was afraid to swallow even her saliva, so she would spit up copious amounts of foamy saliva and bile. She was on antibio-tics to clear up any infection in her lungs and blood pressure medicine to regulate her heart rate. Gradually she began to feel better and stronger.

In early December she noticed that a sebaceous cyst on her chest had gotten much larger. While taking a shower in the past she could get some waxy material out of it. This time a teaspoonful or more came out. It opened up revealing a pocket 1/2" wide.

The home care nurse gave us some gel and dressings to put on it and it healed up over the next three weeks.

In mid-December Phil noticed he had a black stool and had to go to the local emergency room. They quickly diagnosed bleeding ulcers, started a blood trans-fusion, and transported him by ambulance to Bakers-field Heart Hospital. An endoscopy that afternoon showed the ulcers (though a few days later we noticed that some of the images were for another patient!). The next day they did a colonoscopy that showed no polyps or other problems. He was running a fever so they kept him until Thursday.

This was a real challenge for Phyllis. She had to take over her J-tube feeding, meds, injections, walking the dogs, etc. But she did just fine and it raised her confi-dence about getting well.

During this time we discovered an Internet site for victims and caregivers of esophageal cancer. It gave us some valuable information about others and stories of survivors. We discovered that many of the problems we had gone through had been experienced by others. We asked the group about adjustable beds and got several helpful replies.

We decided to buy adjustable beds. After a year we knew that Phyllis would need to sleep with her head elevated for the rest of her life and the foam wedge just wasn't the solution. We checked some on the Internet but ended up buying them at a shop in Bakersfield. The total cost was about $4700.

As Phyllis gained strength and some time free from her tube-feeding, we began to take walks of increasing distance. On Dec 4 we walked across the lots west of our house to Lynx Rd.- about 100 yards. By Dec 27 she had extended the walks to a mile. If not for the winter weather and short days, she probably would have progressed faster. She felt stronger than a year ago.

The major goal of these months was an endoscopy by Dr Maish on January 6. We made reservations at the Tiverton House, a guest facility across the street from UCLA Medical Center, for the evening before. Phyllis had an appointment at CBCC to see if she needed a Procrit shot on the 5th, and we drove on to UCLA after that. It was a smooth and uneventful trip.

On the morning of the procedure we reported in at 9:30 and she was taken almost immediately. We met Dr Maish as Phyllis was being wheeled into the procedure room. She greeted us warmly.

By 10:30 the endoscopy was finished. There was no evidence of cancer, the fistula had healed, and there was no constriction to be dilated. Phyllis could start taking liquids by mouth, to be followed by soft foods after a week. We were on the road to full recovery!

Phil & Phyllis Allin

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