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

Back thru Hell

On Sunday (8/14/05), the day after finishing our fast trip home from Pennsylvania, Phyllis was feeling terrible. For a couple of weeks she had developed abdominal pains whenever she drank Ensure or milk shakes. These would eventually pass, but this time the pain was unbearable. She called her doctor, but got only the weekend answering service. The relief doctor advised her to go to an emergency room. We tried our local hospital, but it was likely to take three hours before anyone could help her. So we drove to Bakersfield and tried the emergency room at Bakersfield Heart Hospital. We got in quickly and they did some tests. The initial diagnosis was pancreatitis, but pressing the area did not show the expected tenderness. They admitted her to the hospital and did other tests – X-rays and scans.

Dr Baika wanted to do an endoscopy, but Phyllis resisted until he consulted with Dr. Maish, the surgeon that had reconstructed her esophagus. Finally she relented and they did an endoscopy. It clearly showed that the cancer was back! We wanted to go back to UCLA, so after twelve days in the Bakersfield Hospital she went home with antibiotics & TPN feedings.

On Sept 6 we had a meeting with Dr Mary Maish at UCLA Med Center where she did an endoscopy and broncoscopy. Another group was going to put in a J-tube, but declined when they heard about her history. The next day we met with Dr Alan Cartmell, an oncologist at the Comprehensive Blood & Cancer Center (CBCC) in Bakersfield, to schedule chemotherapy & radiation. She was just about clear of the pneumonia, but we continued giving antibiotics via IV. She was getting most of her nutrition via IV and felt pretty good.

We moved our trailer to an RV park in Bakersfield when Phyllis started a 5-week series. We planned to stay in the trailer on weekdays and go home on weekends. She had some mild problems with nausea and dehydration that were easily corrected.

The third week started well and we were feeling upbeat. She didn't need rehydration and the therapy took less than half an hour each day. Midweek we had a meeting with Dr Cartmell, the oncologist. We were prepared with questions about what would follow the chemo/radiation, how we would get Phyllis back on a regular diet, etc. We came away feeling pretty low. He said she would likely feel much worse as the radiation therapy continued, that she might develop an opening between the throat and airway that might increase the possibility of choking and pneumonia, and that she might require some major reconstructive surgery. So the rest of the week was spent "pulling ourselves up by our bootstraps."

On Thursday evening Phyllis was running a slight fever. We were told to call in if her temp got up to 100.5 deg. It did, so we called. The doctor on duty called in a prescription and I spent two hours chasing it down only to discover it was for a drug the Phyllis is allergic to. So we called back and they called in another that turned out to be large pills that were very difficult to swallow. But she did it and the fever went down. On Friday she was dehydrated again, so we spent four hours getting that corrected.

At home on Friday, Sept 30 she had a choking spell. We were quite concerned. We decided we'd be safer in Bakersfield if she had an emergency, so on Sat afternoon we hopped in the car to return. It's about 50 miles down a winding canyon road. But we found the road was closed, perhaps due to an accident, so we had to take another route that is much longer and slower. The rest of the weekend was uneventful.

During the week she was scheduled for radiation each day and rehydration on Mon-Wed-Fri. On Monday the nurse noted that she had some redness around her PICC line (the IV connection for her nutrition), and put on some antiseptic lotion. The next morning it suddenly fell out! So we spent 5 hours waiting for a doctor at the hospital to put in a new one.

On Wednesday the oncologist casually mentioned that Phyllis definitely has a "leak" (fistula) between her esophagus and her trachea, and that she should stop taking any liquid or food by mouth! If the liquids get into her lungs she could get pneumonia. We were devastated!

The next night we met with Dr Desai, the radiation oncologist, who confirmed that the fistula had developed because the cancer growth between the throat and airway was being killed by the radiation. He also noted that the opening would probably get bigger and then heal up on its own. (Phyllis had a similar leak after her surgery last October that healed up naturally over several weeks.) We felt quite uplifted by this news. They adjusted her nutrition to make up for her not being able to eat anything by mouth. The week ended with a routine Friday of radiation and hydration. We packed up some stuff and headed home for the weekend. We both felt pretty good.

During the 5th week of her chemo/radiation therapy, the leak between her esophagus/trachea got worse. It was serious enough that they put her in the hospital for about ten days. I was scared and exhausted. The doctor prescribed some medication to help me sleep and I boarded the dogs to ease my schedule. Then they decided they couldn't solve the problems in Bakersfield and transported her to UCLA Med Center on Oct 22. Not much happened on the weekend. When Dr Mary Maish (her surgeon) returned on Monday things began to turn around. We looked into the trachea and esophagus. The surgeon has allowed me to observe the process several times. We could see some "pockets" in the wall of the recon-structed stomach, but no opening on the trachea side. One option was to put in a stent, but it was determined that the possible leak was down too low. 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 Friday they did a new procedure in which they filled the pockets with some kind of human-compatible "fibrin glue." The next day (Fri) she was discharged 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 a few weeks to 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.

Part 6—From Worse to Better