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

Getting Back to Normal

After major surgery and thirty-eight days in the hospital, Phyllis had a huge task ahead – getting back to normal. For us "normal" meant returning to her regular diet and active life-style. It also meant adjusting to changes in her life.

The biggest physical challenge was getting back to a normal diet. When she left the hospital, she was receiving most of her nutrition and medications via J-tube directly into the small intestine. During the next several months she would learn to eat again, gradually replacing the enteral feeding with food taken by mouth. The Isocal came in 8 oz cans, a rich preparation providing 250 calories per can. In early December she was receiving six cans per day, along with small amounts of juice, broth, and Jello. By Christmas this was cut to four cans and by mid-January we were down to two, then one. This was because we replaced those calories with food taken by mouth.

We began with liquids, then soft foods like mashed pot-atoes and gravy. She ate ice cream, pudding, catfish, baked squash, spinach, spaghetti, and hot cocoa.

After a few weeks she had trouble getting food to go down, so Dr. Maish had her return to UCLA for an endo-scopy and dilation (stretching). After the procedure, she had some apple juice and threw up all the way home, but the next day she was eating fairly normally. Dr. Maish had warned us that Phyllis would not feel like going out for several months due to the risk of throwing up in public, but in the early weeks we went to restaurants twice. At the first one she had mashed potatoes/gravy and a small coffee milk shake. At the second (Chinese) she had egg drop soup and rice, then some broth with sauce of a cashew/chicken dish. It was clear by late January that she would eventually be able to eat almost anything, but it would be a long time before she could try steak, nuts or chips. One of the major challenges is getting used to the feeling of being full after even a small amount of food.

The milestone we were working toward was scheduled for February 1, 2005. She was scheduled for another dilation procedure to stretch her reconstructed stomach. At the same time, Dr. Maish planned to remove the J-tube. From then on she would have to take all nutrition by mouth.

Another aspect of returning to normal was exercise and activity. Before the surgery she would hike five or six miles several times per week. At first she could only walk around the driveway – less than 100 yards, but soon she was walking a couple of blocks. It was hard work for her, and discouragingly slow improve-ment. Before long the walks were approaching a mile and included some hills. Her legs were gaining strength. She is doing some household tasks. She also did some weight lifting, especially with her legs.

On January 22 we went kayaking on Lake Isabella. It was the first time we had been in our kayaks since our day-paddle on Resurrection Bay near Seward, Alaska. We took it very easy, covering about three miles. It felt good.

Contacts with friends were very helpful to keep her from getting discouraged by the slow progress. She talked several times with Varda Greenburg, a friend recovering from cancer. On New Years Eve we went to a party at Varda's with friends, then came back and played dominos until eleven. Another friend gave us a newspaper story about Patrick & Diane Dodds, a couple in Kernville that are involved in volunteer work in Tibet. Coincidentally Patrick is recovering from esophageal cancer surgery – two years ago. So Phyllis called him and had a long conversation about his recovery experiences. It was very informative. He still needs to eat 6-8 times per day and cannot sleep flat on the bed. There are some foods that give him trouble that Phyllis has eaten with no problems. Patrick dropped by a few weeks later and brought a recipe book for people recovering from gastric surgery. Again we talked for almost an hour about his experiences.

These contacts, along with the progress in her diet and energy level, gave Phyllis a usually positive outlook about the future. She began to study travel brochures and talked seriously about trips she would like to take – to Spain or Greenland or Greece. She also spoke about skiing the beginners slope at Mammoth Mountain and going to the Grindelwald Ski Club's Valentine's Party. We even made reservations for a trip to Hawaii in May, ten days on Maui and Kauai snorkeling in tropical water.

When will we be back to "normal?" There are some aspects of life that may never be the same. But if normal is the ability to do the things we want to, maybe we're there already.

Part 4—She's Skiing Again!