From Canyon To Cove: Medical odyssey continues

Editor’s Note: This is the second of two parts.

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After getting home from UC Irvine’s gastrointestinal clinic, we cried, each blaming ourselves for causing what would surely be a life-changing illness.

I called my sister Libby, a breast cancer survivor and the only person I knew who could truly understand. I also called Coastline Pilot reporter Barbara Diamond to tell her I wouldn’t be coming back to work any time soon — if ever — and that I would miss working with her.

Now I knew what the doctors knew — and why their faces were so grim.

I spent a week recovering from the endoscopy, which had also included multiple biopsies, numerous little snips at my organs. I managed to survive on a mostly liquid diet since I couldn’t eat solid food. I called the doctor’s office several times, but never heard back. By the end of the week, I was beginning to think I would have to somehow find a surgeon on my own.

Finally, on a Friday, the phone rang. A pleasant woman informed me that Dr. Sean Cao had been assigned to my case and asked if I could come in for an appointment on Monday. She told me that Dr. Cao was a pancreatic cancer expert and had performed many of these surgeries. I felt as if “big hands” had descended from heaven to pick me up in my hour of desperation.

I met with Cao in Fountain Valley. He was tall, nice-looking, with a gentle demeanor, but blunt and no-nonsense. He showed me a diagram of the liver and pancreas; he seemed to think I wasn’t taking my situation seriously.

“You don’t understand,” he said more than once.

When he found out that the UCI surgeons had inserted a metal stent he was visibly upset; this meant, he said, that my cancer was inoperable. I told him what Dr. Lee had said: There was a small stomach tumor, there were biopsies, there was no decision that the condition couldn’t be operated on.

But still there was the metal stent, which my partner Sharon clearly remembered as being described by Lee as “like chicken wire.” Metal, not plastic; this was a sign to Cao that things had progressed too far. Plastic could be removed; metal could not. He frowned, shook his head, and left the room.

In a panic, I finally found Lee’s phone number on a scribbled paper somewhere in my purse. Cao took it away to phone UCI. He returned noticeably calmer; the tiny metal stent was used because of the difficulty of the procedure and the smallness of the area, not because the condition was inoperable.

We all calmed down. Finally Cao took us into his private office.

Was I ready for this?

Did I understand what was at stake?

The survival rate for pancreatic cancer was very low, he said.

He had one patient, a man, who had survived eight years. That was remarkable.

Did I understand this was the same cancer Steve Jobs had?

No, I didn’t realize that, but I recalled Jobs making the news several times over the years with grim reports about his health.

“It’s a relatively rare cancer, so there is little money for research,” Cao said, shaking his head.

He added that most people who get the surgical procedure he would conduct on me were in their late 70s or 80s; they were frail. It was my dumb luck to get this in my 50s while in relatively good health.

I began to understand what he was driving at: either I would have an early death or, with extreme luck, I might have a chance of long-term survival.

But he really wouldn’t know until he got inside and saw what he was dealing with. Other organs could be damaged, the cancer could have spread. There was no telling what the six-hour surgery would uncover.

Did I understand?

I tried to make him understand what I understood: There were no guarantees, but there was no other choice.

“I’ve thought this through every which way,” I said.

I had been through shock, denial, panic, blame and, finally, acceptance. I was definitely ready and felt confident in his abilities.

We shook hands, and he said he would schedule the surgery as soon as possible, given the condition of my intestines, which could close up at any time. He moved some elderly patients back in line so he could operate on me in three days, April 14.

He told me to eat well and take Vitamin K to help my blood clot. He gave me some papers to describe the surgery, called a Whipple procedure, which featured incisions he said one of his patients jokingly described as looking like a Mercedes-Benz symbol.

Was I in a doctor’s office or a car dealership?

My head was spinning, but I signed the papers and we left.

The morning of the surgery, Sharon and I got up at 4 a.m. to get to Orange Coast Memorial Hospital in Fountain Valley by 6 a.m. The surgery was to be at 9 a.m. Sharon’s sister, Holly, would arrive later on to wait with her; that was a godsend.

I had to fast before the surgery, but I wasn’t eating much anyway. By the time we got to the hospital, I was nervous and giddy. I nearly burst out laughing when asked to sign a form agreeing to be photographed with visiting clowns.

I was wheeled into pre-op, where I relaxed in a comfortable bed with pre-warmed blankets. Sharon and Holly came in to visit during the final minutes before surgery. Cao arrived, looking freshly scrubbed — he had a way of appearing suddenly out of the blue, sort of like Kramer on “Seinfeld” — and I gave him a thumb’s up.

“See you in the operating room,” I said.

A needle went into my arm. I was out.

When I awoke, an ICU nurse was adjusting my bed, giving me ice chips, seemingly able to read my mind and tend every need. She told me Sharon had called, but I had no way to call her back, so she kindly let me use her cell phone. A good nurse always understands the healing power of a simple conversation with a loved one.

The next thing I remembered, I was in another room with daylight streaming in, and Cao was hovering over me. Hearing his voice, I raised my head and saw myself in a mirror. This was very reassuring. I was still here, still me.

Cao was also reassuring. With a rare smile, he told me he had removed a tumor and surrounding tissue about the size of a baseball. The entire tumor was out, and there were no other tumors and no other organs affected by cancer. He paused to let this sink in.

“You might want to consider chemotherapy,” he said, then made his usual swift exit.

This all sounded very positive. Maybe it wasn’t so bad after all, I thought.

As I began to recover my senses, I realized that not only was I hooked up to a variety of monitors and a catheter but also had a feeding tube, and two drains on my right side and one on my left. I must have been a sight.

Over the next 10 days, the jaundice began to go away; I was able to get up and move about, using the IV pole as a stabilizer.

The nurses were pleased with my progress. I soon understood why. Most of the patients on that floor were elderly and bedridden.

Before the surgery, a number of friends from Laguna Beach offered to help in any way they could; our neighbors in Laguna Woods were also very concerned and offered help. I told Sharon that she should accept any and all offers and make a list of phone numbers. She would be my main caregiver, a tough job. She needed every bit of support.

After the surgery, these friends came through in stunning ways. Sharon, exhausted by the ordeal, was able to call upon people for rides to the distant hospital. Stuck in bed most of the time, I welcomed visitors, and to my surprise and delight, no less than six of my colleagues from the newspaper made the trek to my room.

I was probably a little delirious from the painkiller injections I got every six hours, and I had tubes coming out on both sides, but everyone said I “looked good” and I began to realize that I was recovering, not only from the surgery, but from the entire ordeal.

After a week or so, Cao arrived at my bedside and delighted me by asking, “So when do you want to go back to work?” I was going to get my life back.

“Soon,” I said. “As soon as I can.”

I left the hospital on April 23. By that time, I was anxious to get home and back to my own bed. The Mercedes-Benz incisions would have to be treated with care, but the one tube left inside would come out in a few days. With Sharon and Holly at my side, I went home, weak but happy.

Four days later, I blacked out in the middle of the night on the way to the bathroom, and was taken by ambulance to Saddleback’s ER. The doctor said I was bleeding internally and had lost half my blood supply. I needed five units of blood.

Seven hours later, as if in a “House” episode, I was lying calmly in a pleasant room with Sharon watching over me when I suddenly began to feel cold. My teeth chattered; my body jerked as if I was having a grand mal seizure.

Suddenly the room filled with nurses and doctors. Apparently I was allergic to the second unit of blood; quickly, the transfusion was stopped and Benadryl added to the IV. This simple cure worked. It took all day to get all the units of blood back into my body, but by the afternoon “House” turned into “The Exorcist,” when I began to vomit huge amounts of blood, much to the consternation of the nursing staff.

I was then wheeled away for an emergency endoscopy, which revealed the cause: bleeding ulcers. The gastroenterologist, Yu, cauterized the ulcers and removed a large quantity of blood and “debris.”

On the third day, I was given liquids to eat; but eating is not a term I would use for gulping down chicken or beef broth, or juice. I was growing more anxious and hungry by the hour. In the middle of all this, the British royal wedding appeared, providing a respite. Normally I wouldn’t have given the celebrity wedding of a prince and princess-to-be a second thought, especially in the wee hours of the morning, but lying in bed hour after hour, with a TV screen as my only companion aside from the occasional visitor, I realized I might as well watch it live. What else did I have to do while waiting for the nurse to come in and check my vitals?

That wedding got me through another night of starvation. I don’t remember exactly when I was allowed to eat semi-solid food, but I do remember what it was: custard. This was the moment the doctors had been waiting for: now they could send me home.

But I balked.

What if I started bleeding again?

What if I blacked out again?

I was underweight, undernourished and just plain worn out. They told me I could leave when I felt “ready.” I called Sharon to come and fetch me.

I was home again, and would spend another four weeks recovering. Before the surgery, I had posted updates on my Facebook page and was rewarded with a slew of prayer offers from people from Philadelphia to Seattle. I believe it helped, and when I got home, there were encouraging cards from friends, family and even distant cousins, an emotional hammock that gently supported me.

Then it was time to go back to work, and again I was unsure whether I could really do it, keep up the pace at a busy newspaper. But my supervisor and coworkers gave me a soft landing, encouraging me, offering help and letting me work at home several days a week. The work itself was uplifting, and I rebounded mentally and physically.

But of course that was just the beginning. The week before I went back to work, I met my oncologist and radiation doctor and was warned not to plan a vacation or a trip for the next six months.

I also learned there are things even doctors cannot know, such as whether or not I really have pancreatic cancer. Apparently the location of the tumor has resulted in a bit of a medical mystery, one that will never be solved.

CINDY FRAZIER is city editor of the Coastline Pilot. She can be contacted at (949) 380-4321 or [email protected].