Editor’s note: Cindy Frazier returned last week from a two-month medical leave. This is her story.
It all started with an itch.
It was mid-February. I was sitting in a staff meeting with our veteran reporter Barbara Diamond when suddenly I couldn’t stop scratching my arms, legs, head and feet.
I’m prone to skin allergies — poison oak is my bane — so it’s not unusual for me to experience unexplained itching.
But this was different.
“You’d better see a doctor about that,” Barbara advised, presciently as it turned out.
I was sure it was nothing, so I kept scratching for another two weeks until I noticed a rash; when I scratched too hard, the bumps would bleed. That finally convinced me this was no poison oak outbreak.
So on March 1, I was at the doctor’s office, explaining that not only did I itch from head to toe but also had certain other symptoms, including severe indigestion. I suggested the possibility of shingles.
“Dr. Z.” looked at the rash, frowned, and said, “You have bed bugs. Go home and look for bed bugs.”
She also filled out a form for a blood test, in case the symptoms were caused by “bacteria.”
I went home and checked for bed bugs and found none. I also got my blood tested and waited for the results. In the meantime, the itching got worse and soon I was unable to sleep through the night, nor could I stomach a full meal.
After another week or two, Dr. Z.'s assistant called and said nonchalantly, “Why don’t you come in to go over the blood test next week?”
Given the lack of urgency in her tone, and in making the appointment, I assumed the blood test had come back negative.
Great. Nothing to worry about.
But the itching continued and by the time I next visited the doctor, I was pretty sure I had jaundice. I had scoured the Internet looking for the combination of symptoms that now bedeviled me: unrelenting itching; urine the color of dark tea; stool the color of light sand; and I was beginning to turn yellow.
I went to Dr. Z’s office and said, “I think I have jaundice, and maybe scabies.”
She looked skeptical, but when I rolled up my sleeve to show my yellow arm, she agreed about the jaundice. She prescribed a mild sleeping pill, and another pill to help the itching. She gave me an over-the-counter ulcer medication. I also talked her into prescribing a cream to attack the scabies, which I was convinced was also present, based on symptoms and my Internet research. (The scabies disappeared after the treatment, but the itching continued.)
Why is my skin changing colors?
The next question was, What was causing the jaundice?
Dr. Z. ordered a hepatitis test. Days later, when the test came back negative, she ordered a liver ultrasound, which revealed a blocked bile duct.
By that time, I was becoming an expert on the causes and symptoms of jaundice so I knew what was happening to me: the bile that should have been going through my liver and out “the other end” was instead being secreted into my skin.
Bile is an acid; it digests food; it can burn a hole in a floor. My skin was toxic with acid and that’s what was causing the itching and the rash. It was a hideous thought. I began to take long, cooling baths to try to wash off the bile, but this was futile. I couldn’t stand anything on my skin; I wore T-shirts inside out. I lathered my body in aloe vera gel. I don’t know how I kept up my hectic work schedule, commuting to Costa Mesa, where I had been newly assigned.
After the results of the liver ultrasound, Dr. Z. said I needed a CAT scan and a gastroenterologist. I waited for her to order the scan and find the gastroenterologist. But no orders came.
Meanwhile, the symptoms worsened. At some point, I couldn’t eat without feeling sick; at a Laguna Beach Visitors Bureau event I barely nibbled the delicacies. At a Laguna Playhouse opening, nothing tasted right. And I began to notice that people I knew weren’t greeting me with the usual friendliness; at one event I figured it was just an off night until one woman exclaimed, “My gosh, Cindy, I didn’t recognize you, you’ve lost so much weight.”
My weight had been plummeting. I had, ironically, been getting compliments since December about how thin I was. “Your [column] photo doesn’t do you justice,” one city official told me with a wink. I was pleased, of course, not realizing this could be a sign of something ominous.
Yet by mid-March I was having inklings that something was very wrong. I found myself saying a prayer every night that we used to say as kids: “If I die before I wake, I pray the Lord my soul to take.”
In the morning, I’d say a little affirmation, “I will not die today.”
During the day, I dragged around exhausted and simply wanted to sleep. Yet during the night I was alert, turning things over in my mind hour after hour, constantly scratching that ever-present itch. Day was night, night was day.
Often in the middle of the night, I’d wake my partner, Sharon, with a desperate cry for food:
“I must have yogurt right now!”
She’d jump up and bring it to me in bed, a midnight snack I devoured, as if stranded on a desert island.
I was then able to get a little rest and have enough energy to get up the next morning, to make it through one more day.
At this low point, I was glad I had planned a vacation for the last two weeks of March. Surely all I needed was a good rest, and some fun excursions, and I’d be back on my feet.
Despite the lack of sleep and difficulty with eating, Sharon and I managed to take in a situation comedy taping at Sony Studios in L.A. and dinner at one of our favorite Mexican take-out places in Santa Monica.
Then we drove to Temecula for a little wine tasting. We got back from Temecula on March 31. The next day, I got up, felt terrible and immediately went to the nearest emergency room, Saddleback Hospital. When I told the ER doctor my story, he ordered an immediate CAT scan; it revealed the worst: a mass around my pancreas.
The way healthcare workers eye you
You know you are really sick when the doctors and nurses have that wide-eyed look of controlled panic; if you knew what they knew, you’d be petrified. The ER personnel all looked at me that way, and no wonder: By this time, not only was my skin yellow, it was turning gray.
My eyes were glazed and jaundiced, and yet I was talking and joking as I was wheeled around the ER. In fact, during this time I felt oddly energetic. Whatever “it” was, it hadn’t stopped me yet; I was like the Energizer Bunny, defying the odds with supercharged mental batteries.
But I was beginning to have the strange sensation that my mind was pulling away from my body; my mind was going on under its own power, but my body was lagging behind, winding down, possibly coming to a complete stop. Could my mind just keep going without my body? Was I on the edge of a new plateau of existence, something like Rimbaud’s “Intimations of Immortality?” Or was I simply on the verge of collapse?
The Saddleback doctors swung into action, scheduling a state-of-the-art endoscopy procedure at UC Irvine Medical Center the following Monday. Not only would the UCI doctors look into my abdomen and see what was there, they would insert a stent device to open a clogged bile duct so I’d have some relief from the jaundice.
This sounded great, and I was eager to get it done. First, I’d have to go on a liquid diet and fast for 12 hours prior to the procedure; not hard for me, but not good in my weakened condition. On that Monday, we made it to UCI only to learn that Dr. Z. — who never did schedule the CAT scan weeks earlier — had failed to authorize the stent. The stent procedure required me to be knocked out for four hours, and the gastrointestinal clinic at UCI wasn’t prepared for that lengthy and complicated procedure. So it was rescheduled for the next day, after a sympathetic nurse dropped everything to get Dr. Z.'s immediate authorization.
Sharon’s sister, Holly, who had driven us to the medical center, generously said she would repeat the arduous trip.
I went home, very weak, and endured another round of fasting for the Tuesday procedure. By the time we returned to UCI, I was pretty wobbly, and every medical person I encountered looked at me like the Grim Reaper was breathing down my neck. There was concern that I wasn’t strong enough to take the four-hour anesthesia. Yet, the procedure went well, even though the scope was so large it couldn’t “see” much, due to my hugely swollen inner organs.
After I woke up, the surgeon, Dr. Lee, said he found a small tumor on the outside of my stomach but couldn’t see what else was present. He also told me, alarmingly, that he didn’t understand how I had managed to get enough nutrients to survive for so long, given that my intestines “were the size of a baby’s intestine.”
He held up his pinky finger to show me the narrow opening through which all the food I ate had to pass. He warned that the opening could close up any time, and I would need surgery very soon in order to survive. Then he handed me the card of a colleague and said he would be referring my case to him.
I looked at the card and shuddered when I read, “Dr. Imagawa, pancreatic cancer surgeon.”
Coming next week: Hospitals, doctors and help from friends and family.