A Kick-Ass Fairy: A Memoir (25 page)

After weeks of sorting out the mess I noticed some shocking business practices. The numerous mistakes in billing, overbilling, the declining balances over months of statements for bills that had yet to be paid was mind blowing. I couldn’t imagine how anyone could deal with the magnitude of this mess if they were really sick or not an auditor. I spent hours on the phone making calls to doctors’ offices, hospitals, the insurance company; spent hours on hold and debating poor accounting practices to get correct statements.

Fortunately, I was very well insured through my husband’s company. The bottom line was that my expenses were capped. However, many business managers of my health care providers that were “contracted” with the insurance plan argued that I was responsible for amounts above the rates they agreed to accept as part of the contract.

Knowledge is power, and I knew they were wrong. Success hinged on being prepared (homework done, understanding the plan) and being a fighter (not easily intimidated as well as properly equipped—that is, armed with telephone and a fax machine).

The most astounding news of this ordeal, other than finding out that an erroneous $84 balance had been turned over to a collection agency, was that for the year of 2001 my total (billed) health care expenses were well over half a million dollars. The Whipple admission alone was more than $330,000. I realized in horror that if I didn’t have the “good” and very expensive insurance I had (a preferred provider, freedom of choice) I would have been billed even more than the insurance company had to pay and most certainly would have had to find a way to come up with more than $500,000.

If I didn’t have insurance, I probably would not have gone to the doctor and most certainly would have fallen through the cracks. My breast cancer or my pancreatic cancer would have grown to kill me. I wondered if anyone predicts mortality rates based on types of insurance plans, options, and health care provider choices versus just not insured. I felt very lucky and very blessed. I realized if I was someone else, my future would look very different. I know I would have already been dead.

By Christmas I woke up to the fact that one result of the past six months was a substantial deterioration in Brad’s behavior and his grades. He had become very testy, pushing limits to the point of exasperation. He was only 11, but the situation was already getting out of control. He was a former straight-A student who was now in academic jeopardy. He’d been offered opportunities for advanced math and foreign language classes at the high school for the next year but was now failing those subjects. I didn’t know if he was afraid and losing his self-esteem or just crying out for attention. He was sorely in need of some rescuing, and it felt beyond my abilities. Brad had become part of the collateral damage from the most recent campaign of my war.

My prayers were answered when a good friend told me about an educational psychologist who ran a clinic that had helped her son with similar problems turn around. I scheduled all of us for an appointment and Brad for testing in January after the holiday break. Marching, getting shot at, getting up, moving forward, I felt like a soldier in the trenches. Fortunately, I had not yet been mortally wounded, though I had taken plenty of shrapnel. I started beating myself up for letting Brad slip, but I was taking steps to fix the problem.

Christmas came and went. Alane and Cameron visited for the holidays. New Year’s Eve, heralding the onset of 2002, was a black-tie affair (complete with karaoke) at Mary’s house. Kim came with her boyfriend. She was doing well in school, safe, and out of the line of fire.

When Brad’s school term resumed, we met with the educational psychologist, Dr. B., and found out from the results of testing that Brad was practically a genius, equally on both sides of his brain. He had no learning disabilities and was having to work hard at not doing well at school.

Dr. B. set us on a program of accountability for Brad, with rewards and consequences based on how hard he worked. We established a “contract” in which undesirable behaviors were previously agreed on by all parties, and consequences for poor choices took the form of Brad’s picking a card from a deck of chores. This program took so much pressure off me—the highly invested, disciplinary parent, who no longer had control of anything. Several times a week we had to go to Dr. B.’s for check-ins, homework planning, study skills, and a weekly wrap-up. Coming home to make dinner was a five-mile drive in hell having to listen to my son, letting off steam—to put it mildly. But slowly, like the train chugging out of the station and then building up steam, Brad started getting back on the right track.

The results of the genetic testing revealed that I had no known genetic defect. The company that held the patent on the BRCA 1 and 2 gene testing billed me close to three thousand dollars, and our health insurance wasn’t going to pay for it. I thought it was absurd that a private company owned the rights to test for a genetic defect. I couldn’t understand how this could make sense since I had the view that the point of doing genetic research was for the betterment of mankind. In June of 2000 the completion of the successful rough mapping of the entire human genome had been announced. I wondered how much of the genome had already been privatized.

How could a company hoard segments of the universal human DNA or a disease-related DNA? I couldn’t understand how diseases of genetic origin like diabetes or cancer could be studied if most of the population couldn’t afford the tests because they are patented and considered out-of-network, out-of pocket expenses. I thought the United States was making bad policy here. My fury with this situation ticked me from a tropical depression to a Class 5 hurricane.

In any case, we found out that the retesting of my breast tumor revealed that it was 3+ positive for HER2/Neu overexpression. I would have been a candidate for Herceptin if it had been discovered and available in 1996–1997. The retesting confirmed that the tumor was estrogen and progesterone negative. The pancreatic tumor was tested and also found to be negative for estrogen and progesterone receptors. It was negative for epidermal growth factor receptor and the HER-2/Neu oncoprotein overexpression as well.

For the next few months, the family was on autopilot. Brad continued seeing Dr. B. Doug started seeing Dr. O., a psychotherapist. I saw the entire alphabet of doctors and had my regularly scheduled three-month scans, MRI, and blood work. Kim was dealing with her issues at school and working at the Women’s Health Center.

I decided I wanted to have a party in July to celebrate that I apparently was going to make it to the one-year anniversary milestone since the pancreatic cancer diagnosis. In all the fun of preparation, I was back to normal—other than having regular stomach aches and some back pain. My strength was returning. I couldn’t understand how I could feel so well physically with so many body parts missing. Why did we have these parts if we really didn’t need them? I was still on hormone replacement therapy, an antidepressant, and a tranquilizer for sleep. But I began to believe that life had a chance to be good again.

Chapter 23

July 2002

I
n a mood of optimism, I sat down with Doug and asked him what he thought about the party idea. “Let’s do it,” he said. I began planning. At the time, the revival of the reality show genre was still in its early days with the recent debut of Who Wants to Be a Millionaire. Survivor was in its second or third season. Though I had never actually watched it, I knew enough—between the name and the concept of competing tribes—to use in planning a theme party. We would hold the party outside in our yard and tribes of guests would perform group karaoke. The decoration theme would, of course, be island tiki.

The date was set for a weekend in late June. We invited around forty guests plus my family from the East Coast. Alane was going to come from North Carolina with her son, Cameron. Nancy was going to come from New Jersey with her boyfriend. My parents were coming as well, though even after a couple of years, I wasn’t exactly looking forward to seeing them.

A week before the party, my parents arrived, hobbling slowly up the gate ramp after their cross-country flight. Wow, did they get old. Mom was only 68, Dad 73, but they seemed at least a decade older. When she saw me, my mother, as usual, sighed with her typical slouch and look of exasperation as she handed me all of her bags, before I even had a chance to kiss or hug either of them hello.

My dad seemed happy to see me. As he smiled a little sparkle appeared in his eye behind his glasses smeared and coated with flakes of skin from his eczema. He had shrunk in height, leaning to one side, and had grown a bigger belly. His pants pockets still looked like they were each filled with a sandbag containing every worst-case-scenario-planning artifact, a holdover from his Boy Scout days run amok. He unburdened himself temporarily of his carry-on bags to hug and kiss me, shrunken and crooked, his burdens embodied.

When we arrived back at the ranch, they settled themselves in Kim’s room, unoccupied while she was away at college. They covered the double vanity in the attached bathroom from end to end with all sorts of necessities and contingency items. How all this stuff could arrive in two small suitcases was beyond me.

At this point, even though it was cool outside, our house air conditioner mysteriously was now set at 65 degrees. Hot water was suddenly no longer available. All utility meters spun at warp speed. This was all to be expected. It was an invasion, not house guests but complete occupation.

A visit from my parents required putting on my imaginary armor as well as constant vigilance—getting myself centered through meditation, breathing exercises, prayer, visualization exercises; discussions of previsit can and can’t do lists with Brad; anything and everything imaginable to avoid a level 5 core nuclear meltdown of me. I had saved several projects to keep Mom and Dad busy and out of my hair for most of the week, including making the table centerpieces, helping with decorating, and adding to preselected playlists that were to be burned onto CDs.

For the table centerpieces they had to cut out the “Island Man” I’d copied from the Survivor logo and stenciled onto black foam sheets. Then they had to cover cardboard tubes with fabric using a glue gun, add the cheap fake fern for the top of the “palm tree,” mount all of this onto a Styrofoam base, and add a “tiki-torch” candle.

At first, my mother seemed happy to be doing this, but soon the muttering under the breath began, followed by repeated huffing, and then outright complaining.

“I don’t know why I even came, if all I’m going to do is work.”

Everything wound up involving my direct participation anyway. So, I thought, why did you come, Mom? I wanted to scream at her, You are here for you and only you, Mom. Instead of confronting her I got a perpetual stomachache, which cramped further with her every huff and mutter.

Meanwhile, my dad seemed to have developed undiagnosed narcolepsy sometime over the years and was constantly falling asleep in the middle of something. I’m sure this condition developed as a survival mechanism. Dad would fall asleep in the middle of a sentence, or while holding something at a weird angle, even while he was standing, and especially when he had the remote for the TV in his clutches.

That week, when I realized that he was MIA on a regular basis, I sometimes discovered him “napping” in bed propped up on several pillows—with one foot on the floor, just in case—listening to talk radio (Rush Limbaugh or the like), through an ear bud plugged into a portable pocket radio in his shirt pocket. Or he could be found scratching his eczema-patched head in front of our home computer ostensibly working on the CD burning project but in reality searching the web for some obscure whatnot or trying to figure out why the computer just froze up.

Dad was harmless, and I could really enjoy him when Mom wasn’t around.

But she always was around, and by 3 p.m. every day was screaming “BRRUUCCEE” from across the house. When he timidly appeared, she switched into exasperated prima donna mode, and as if she’d actually done something that day, demanded, “Make me a drink.”

Being well trained, he obeyed. “Ice or no ice?”

During the final party preparations, Mom watched the live dress rehearsal of the Hidden Assets (my girlfriend group from the neighborhood) doing the self-choreographed routine of Shania Twain’s “Man! I Feel Like a Woman!” while sitting in a lawn chair. Then she was attacked by the automatic sprinklers and retreated into the house.

We finished decorating the backyard, stringing tiki mask lanterns across the span of the back deck, wrapping the middle post with brown burlap, adding clusters of ferns to suggest a palm tree, and finally securing the purchased coconut decorations that looked more like a large, hairy brown scrotum.

This back deck was situated behind our living room and master bedroom. It was covered by the roof, was thirty feet long and about six feet deep, perfect for the main event, the karaoke competition. The sitting room off the master had a doorway out to the deck, the perfect entrance for the Hidden Assets’ act. The deck had a couple of steps down to the concrete walk and then the lawn. At the end of the house, the walkway continued to the playhouse nestled under the redwood trees. The playhouse, built for Brad years before, was converted into a “tiki hut” where the bartender we hired would be making the party signature drink—frozen piña coladas—as well as serving beer, wine, and nonalcoholic beverages.

The night before the party, the rental equipment arrived. Just as we were finishing the decorating details, Doug hit the scene in the kitchen with bags of groceries purchased on his way home from work, all necessary to prepare the food for the party. He had researched his menu for days, planned his “secret” recipe for pulled pork sandwiches, dirty rice, cole slaw, barbeque chicken, and grilled veggie kabobs for the main event. Sushi, coconut shrimp, mixed fruit salad in a carved watermelon, chicken satay with peanut and teriyaki dipping sauces would be the appetizers. No one would leave hungry.

Leaving Mom with her drink of vodka and Wink, thinking she was talking with Doug while he chopped, sautéed, slammed, banged, and ran the garbage disposal intermittently, Dad and I snuck down to Brad’s room to finish burning the CDs for the cocktail hour music for the party. Dad had showed me long ago that the music can make or break a party. He also taught me you could have a party with the right music without actually ever having anyone over.

We included an eclectic mix of rock, pop, country, doo-wop, Elvis, Frank, Hawaiian, and some Chicago blues. We timed the music to crescendo just as we would initiate the first tribal karaoke challenge. Dad and I had fun picking the music and singing along. I learned more about my dad’s love of doo-wop music, his favorite being the 1955 jump blues song “Speedoo” by The Cadillacs. My dad was a great singer, but I’d never heard him just let it rip. He especially loved Nat King Cole and the Mills Brothers.

Later that evening, Brad and I went to the airport to pick up Alane and Cameron. Alane and Linda reunited, Linda and Alane, soul sisters. Brad and Cameron, cousins, buds, and the builders of worlds in the land of the Sims. Once back at home, this was an intolerable situation for Mom. You could just feel the heat rise; the ions in the air change, the skies darken throughout the whole house. It was Pompeii—before.

Fortunately, beds needed to be made, towels provided, sleeping bags opened while Mom’s version of the vodka tonic quenched the eruption for the moment. Unfortunately, my stomach rivaled any USGS seismograph for geologic sensitivity, and my stomach ache wasn’t getting any better.

The morning of the party, Nancy and her boyfriend Bill arrived from their nearby hotel. Nancy expected nothing less than to be immediately put to work, intermittently providing an escape for me and Alane from Mom-zilla for one of our favorite high school pastimes—passing a cigarette back and forth in the garage or behind the playhouse, laughing and making fun of our parents, relieving the tension.

The weather was sunny, mid-70s, perfect for a party. The roses were in bloom. We had a beautiful large yard, just a small lawn but wonderful terraced gardens bordered on both sides by majestic redwood trees standing sentinel. Behind the deer fence at the back of the yard was a sprawling California valley oak on the hill that ran into the open space that was part of Mt. Diablo State Park. The yard also had an in-ground pool with just enough decking for several four-person bistro tables. We had a sense of seclusion from our neighbors, but since our yard was a natural amphitheater, I was sure the noise would bounce back off the hill in back and be heard around the neighborhood.

Early in the afternoon, I ran out to pick up the tropical-colored balloons and arrived home just as the karaoke system was being set up and the servers and bartender arrived. With so many details to attend to and instructions to be given, this meant I had not quite finished dressing when the first guests started arriving. They were all good friends so it didn’t matter that my safari shirt was buttoned up the front unevenly for the entire party and never completely tucked in.

In addition to the Hidden Assets—Lyn, Mary, Jane, and Kelly—and their husbands, ex-husbands, and boyfriends, we invited my fellow tenors from the choir (all men) and their significant others; neighbors; and friends, especially people like Clara and her husband Don who had been such incalculable support over the past year. At least a dozen people were preselected for each of the four tribes of the party. Everybody was given a “Survivor” name tag upon arrival with their tribe identity indicated on the bottom.

Everything was perfect. Everyone seemed to be having a great time, slowly but surely relaxing into the island party atmosphere. Kim arrived from Santa Barbara with a male she introduced as a friend and was in a happy mood. Doug joined the party looking like a Hemingway version of the Crocodile Hunter, dressed up with construction boots, thick gray hiking socks with a red band on top, khaki cargo shorts, a multipocket khaki fishing vest with his broad-brimmed canvas hat purposely snapped up on one side to complete the look. I was reminded once again how creative he was, for a CPA.

The piña coladas were flowing, though some partiers opted for straight rum on the rocks. The time came for Doug and me to open the karaoke with Queen’s “We Will Rock You.” Shortly after we began singing, I knew Doug had probably started drinking a while earlier, so our performance was bad enough not to intimidate anyone. Doug immediately followed that number with his solo performance of ZZ Top’s “La Grange”, playing an inflatable plastic guitar and jumping all over the “stage.” It was especially funny considering his six-foot-three build and his normally quiet and reserved demeanor.

The first tribe was called up to sing “California Girls” and came up to the stage with some trepidation. It’s always fun to watch who holds the microphone and whether they share it and foster group singing or hog it and only put the mike in front of a teammate during the instrumental parts. The second tribe came up to sing “My Boyfriend’s Back,” including the do-over demanded a third of the way through. Tribes 3 and 4 did their thing and by then everyone was having fun. Doug emerged as the life of the party, dancing across the stage, playing the inflated sax with the wrong tribe, blocking the karaoke screen, disrupting any hint of serious competition. After all the tribes had gone at least once, everyone got their prize, a large button pin with the image of Survivor man that said “I Survived—Zercoe’s Karaoke 2002.”

Singing, or something like it, continued with couples, girls only, and the neighborhood guys singing their standard “Brandy.” My mom and dad lip-synched Louis Prima and Keely Smith singing “That Old Black Magic.” Both my parents were such hams. My dad was wearing a straw hat and miming playing a string bass. My mother actually thought Keely Smith’s voice was her own and she was playfully in heaven. For just a second I could see them young, healthy, fun, and happy. Then I felt sad that I hardly ever saw this side of them. My dad by himself was a clown, yes, but together? Mom? Enjoy the moment, I told myself.

Inhibitions were falling by the time Mary’s husband, our friend Brian, went to sit on a chaise lounge and missed it by three feet, hitting the lawn with a loud thud. Not quite sure what had happened, he said he was dizzy. After we made sure he was all right and seated comfortably, the singing continued. Later, he laughed off the ordeal, jokingly accusing the bartender of slipping something into his one drink. Cameron had been drafted to video the party, so later we saw that Brian had made several trips to the hut for refills before the spill.

As the sun was setting, before dinner and The Hidden Assets performance, the guys all got up and sang Steppenwolf’s “Born to Be Wild” while wearing all manner of head attire—sombreros, grass hats, police hats, hats with dreadlocks, Indian headdresses, construction helmets. Doug continued dancing, singing, playing instruments. I wondered at the time where he was getting his energy and later discovered that he, Kim, and our neighbor Dennis had each chugged an eight-ounce glass of Belvedere vodka.

In a flash it was time for The Hidden Assets’ big show.