A Kick-Ass Fairy: A Memoir (23 page)

During the workshop on making luggage for the doll, I pinched the sewing needle between my teeth to pull the thread through the imitation leather and seriously chipped my front tooth. Here I was indulging on the order of Marie Antoinette with this doll obsession and now looked like I should take up residence in a double-wide down by the railroad tracks. What the hell was I doing? I decided to stop spending all this money on a doll and become a living doll myself—spend more time on my appearance and care for myself. Why didn’t I think of this before?

Somewhere between the trip to Chicago and the repair of my tooth, I had a dream. I was in heaven with God, saint that I was. Everything was golden, glowing, and joyous. Doug had just died on earth.

God turned to me and asked, “Well, what should we do? Should we let him in?”

I didn’t have to think about it for more than one second. I said, “Of course we should.”

I woke up realizing with profound intensity that, when all was said and done, love wins and I loved him. I think this was a message of hope and helped me to relax a bit, realizing that in time I’d feel better about everything, including Doug. I needed to start focusing on the big picture of life and remember the many positive qualities my husband had. Then I purchased a new car, a two-seat roadster convertible with personalized license plates. I sold my mommy car and said thank God and good riddance.

The trips to the cognitive behavioral therapist and physical therapist continued, without much, if any, improvement being noted on either front. In December, from out of nowhere a huge pimple-like thing erupted on my face, growing from nothing to Krakatoa on my left cheek within a week. It didn’t seem to be a normal pimple; it was an eruption of another kind. After Christmas I went to see my plastic surgeon, somehow knowing this thing had to be removed. He did so immediately, sent it to pathology and informed me it was a keratoacanthoma. This news, which would probably be no big deal for most people, sent me reeling. This was yet another “-oma,” a low-grade skin malignancy. What else was going on that I couldn’t see? I couldn’t stand it anymore. I was teetering close to the event horizon of the black hole.

The beginning of 2001 bumped along. I tried to focus on the steps necessary for Brad to apply to private middle schools, the testing and school visits. I called an architect to begin working on formulating a plan to remodel our house to fix the feng shui.

In early March we found out that Brad didn’t get into any of the schools to which he applied. I was heartsick. I knew that he wasn’t particularly motivated about the testing. Who knows how he was on the school visit? My experience with Kim at this age was that this was the age where the garbage starts. I thought he might have purposefully sabotaged himself.

The night of March 31, Doug and I went to San Francisco for dinner with friends. Our friends knew the chef at Moose’s restaurant in North Beach and we were showered with special dishes and wines. The next morning, Doug and Brad left for Tahoe to go skiing for the day.

That day I fell into the black hole.

Chapter 21

April–July 2001

April 10, 2001

I awoke the morning of April 1 in excruciating pain—a 10 out of 10. I could barely breathe. It was like I’d been run through from my upper abdomen to my spine with a spear and was left hanging on the wall.

I used the “hissing” and “heeing” breaths from Lamaze classes I took years ago to somehow get through the day. I also alternated between the usual feelings of hope and utter dread. Without eating or drinking and staying very still, I lived until Doug and Brad got home from skiing in Tahoe.

Over the next 24 hours the pain dissipated somewhat but it was now radiating under my right shoulder blade. Even still, I managed to resume normal duties and I didn’t know what to make of what was happening. Over the next week the pain continued to subside, but I made an appointment with my primary care doctor, Dr. Donald, anyway, to see what he thought about this latest development.

After examining me, he thought that I might have had a severe gall bladder attack and ordered blood work, including pancreatic enzyme tests for amylase and lipase. He called me at home a couple of days later to see how I was feeling and to tell me that these pancreatic enzymes were still significantly elevated, a week after the initial attack. When I told him that I was still experiencing abdominal pain as well as a nonstop headache, he said that he wanted me to go to the emergency room and be admitted to the hospital for tests. I couldn’t imagine what could be wrong but I knew it couldn’t be good.

April 11–16

After being given adequate pain relief in the emergency room, I realized how much pain I’d been enduring for weeks, even months. After doing numerous scans in the ER, they admitted me to the medical floor. I was a nervous wreck, squeezed in between two roommates, one moaning loudly in the process of passing a kidney stone, the other having some noxious intestinal problem. After much complaining to doctors about unrelenting migraine headaches (probably due to caffeine withdrawal), I was transferred to a private room for some peace and quiet and given caffeine in an IV drip, since I wasn’t even allowed ice chips.

After the acute episode appeared to have been subdued with painkillers and forced starvation, the oncologist told me that the CT scan revealed a large (8 cm) tumor in my spleen that was not related to the cause of the pain. The visiting oncologist said that the large mass on the spleen was probably lymphoma.

Before discharge, I learned from the doctors that the probable cause of the pain, which had now been named “pancreatitis,” was gallstones, possibly stemming from excessive doses of hormone replacement therapy or (they implied but I emphatically denied) a drinking problem.

I was discharged from the hospital and instructed to schedule and attend numerous follow-up appointments with specialists and to get more lab work done.

May 14–17

The severe abdominal pain continued. The only thing that helped was not eating, which has resulted in my losing 15 pounds. I located a gastroenterologist affiliated with Stanford Hospital and scheduled an appointment for a consultation, but before that could happen I was back in the hospital.

I was moved from a semi-private room to a private room after, again, being plagued by headaches and insomnia. Then, while I was outside smoking, I suddenly became very weak and would have collapsed had it not been for Doug holding me up. In between scheduled radiology tests, I was informed that something was wrong with my blood and I would need to be tested for hepatitis, HIV, and other viruses and would then be seen by the hematology experts. Initially, my diet consisted of nothing other than an IV drip.

My blood tests weren’t good (hematocrit of 35.4, a white cell count of 2.5, and a platelet count of 79). They said it might be a recurrence of the Epstein-Barr virus that caused the mononucleosis I’d had in 1972, or I could have a parvovirus. Everything else was negative. When no qualified hematologists could be found (due to the entire department’s attendance at some out-of-state conference), the residents descended, complete with a cellophane-wrapped smoking cessation kit, which was abruptly refused, citing that I was already dealing with enough.

A CT with 3D reconstruction study of the pancreas revealed a prominent pancreatic duct with small “vague low attenuation in the region of the pancreatic head.” I was told no discrete mass was identified.

At this point, they were thinking that the mass in my spleen might be a hemangioma (a benign blood tumor). After a couple of days of fasting, my diet was changed to clear liquids to replenish my now scant blood supply, much of which was currently located in the lab, still undergoing tests.

Clara came to visit. In between interruptions from medical personnel, we shared the following moments of temporary sanity and laughter:

The attorneys have been called!

This is the best medical care in the world?

The victim has left the building!

Who’s in charge in here, anyway?

In what other industry do you have to pay top dollar to be abused?

$10,000 a day—a bowl of Jell-O and not even a pedicure?

I hope it’s contagious!!

Who are the ones who are really sick?

How wide does the crack have to be?

Physician, do no harm, do nothing. Patient, heal thyself!

Zero: What we knew yesterday. Zero: What we know today. Zero: What we will know tomorrow.

“You picked a very bad time to be sick”—according to the attending physician.

I was discharged with instructions that included a diet of clear liquids and Boost. I came home to the end of fifth grade for Brad, the graduation of community college for Kim, an extended visit by my mother-in-law, and Doug’s return to work. This left me juggling all the balls with arms so weak I could barely hold a cigarette to my lips.

May 24

I met with my oncologist today. I am appalled to learn that the mass on my spleen has been there—in its current size—for at least 5 years, but it was never reported despite repeated prior testing.

“Just how large does a mass have to be to be seen by radiology and appropriately noted?” I asked. My oncologist looked like a deer in the headlights. Apparently an 8 cm tumor was not worthy of note in 1995.

I am fearful of falling through the cracks, especially since I have now shrunk from a size 10 to a size 6. I feel another war is coming. The enemy chatter has been monitored; the word tumor blatantly and repeatedly appears on the screen, missed by all intelligence (perhaps an oxymoron) for years. The enemy cells are deeply embedded. I am frustrated and very depressed.

May 25–26

My anxiety was curiously under control as I was prepped for the ERCP (endoscopic retrograde cholangiopancreatography) procedure. I was semi-conscious while they inserted a vacuum cleaner–type hose down my throat, through my stomach and duodenum, and into the common bile duct. I noted that it was very unpleasant. I had previously been told that this procedure could incite an acute pancreatic attack and I would therefore be staying overnight in the hospital to be monitored. I awoke feeling very beat up.

The next morning, after no episodes of pancreatitis occurred, I was visited by the gastroenterologist, Dr. Y. Doug was there when I was told that the test was inconclusive. He said there was no cytology confirming a cancer but that during the procedure he was unable to get a wire the size of a strand of hair through the stricture in the pancreatic duct, therefore a stent insertion was impossible. When I asked Dr. Y. whether he thought I might have pancreatic cancer, he was evasive. He made some allusion to “shades of gray” and then added, “It’s a mystery.”

After Dr. Y left the room, Doug looked in my chart, found the report and looked at the photo taken during the procedure. In a breaking voice he told me that the report confirmed there was a large light brown mass blocking the pancreatic duct and the radiologist’s impression was the worst, a pancreatic tumor was suggested.

I was discharged with a referral to a surgeon and prescribed diet of clear liquids, saltines, rice, pasta with no meat, and pureed fruit—but only if tolerated.

I am shell-shocked, still walking and talking, but feeling suspended from reality and not really here after being hit with a 20-megaton bomb.

May 30

I met with the surgeon. Clara came with me for support. Even though I was the patient, I was horrified throughout the entire appointment for the person having to undergo this operation. This physician, Dr. H.W.T. was pleasant and knowledgeable about his craft. He confirmed that there was a tumor blocking the pancreatic duct that needed to be removed.

He described the surgery, the “Whipple procedure,” drawing pictures to help explain it. They remove the head of the pancreas, the entire gallbladder, the duodenum (the portion of the small intestine between the stomach and the jejunum). Then they open the tail of the pancreas and attach the stomach, the remaining portion of the pancreas, and the liver duct to the jejunum. Basically, they reroute most of the digestive system.

“Luckily,” Dr. H.W.T. noted, “you are young and in good physical shape.”

He informed us that they were also removing the spleen. He agreed to do a straight vertical incision rather than a curved one. I told him of my concern about disrupting the pedicle flap from the breast reconstruction. He agreed not to use staples.

He casually informed me that I would receive an epidural during the procedure to help control and minimize the immediate post-operative pain. The hospital recovery would be around a week to 10 days. Initially after the surgery, I would be fed with a feeding tube placed into the jejunum to allow the new stomach-jejunum attachment to heal. I would have several drains.

His schedule had an opening for 5 days hence. I agreed to the timing and walked out of hospital, but my mind went further out of the building to somewhere over the rainbow. I was imagining myself again as Scarecrow in The Wizard of Oz complaining about the mischievous winkie monkeys taking parts of my body and throwing them here, there, and everywhere. But the question was, where was the attachment connecting the brain? Sometime in early April my brain left my body.

May 31

Notes on Implementation of Operation Code-Named “Whipple”:

Today—D-Day minus 4 (D-Day: day of massive assault/possible date of death).

Snap Out of It.

Pull yourself up by the bootstraps.

Prepare tactical offensive and defensive preparation for major combat. The Whipple procedure (not operation) is a whopper with a high mortality rate.

Stop feeling sorry for self.

Begin drafting the troops.

Secure the perimeter. Inform parents they are not coming to help since the general does not want to refocus on taking care of them instead of taking the hill.

June 1—D-Day minus 3

Celebrate Doug’s Birthday.

Eliminate nonessential communications.

Assign Alane to post of Communications Director for tactical communiqués and family tree debriefing.

Assign Lyn to post of Assistant Communications Director for friends and California contingency debriefing, including the recording of daily communiqués on answering machine. Lyn to care for Indigo.

Arrange with Clara for all essential care of Brad.

June 2—D-Day minus 2

Arrange base fortification, including laundry, food supplies, settlement of financial obligations for during time of MIA.

Secure post-operative help through sister Alane.

Initiate reconnaissance with God through the receipt of Sacrament of the Sick and prayer circle at church, mass intentions, prayer chains at other churches.

Write letters to children and Doug to be opened in the event of mortality.

June 3—D-Day minus 1

Prepare mindset for war, hijacking of the body, and being held deep inside enemy territory with assumption of enemy control of body for prolonged period.

Remember to breathe.

Discuss last wishes with Doug and give him sealed letters.

Enjoy last rations of clear liquids, cold chocolate Boost.

Take 2 mg of Ativan for sleep.

D-Day

I was prepped for surgery while functioning in a state of nonreality. I talked, answered questions, made jokes, played games of cards with Doug, and appeared cooperative without actually being present. I was busy contemplating the abyss, reconciled that I’d been charged, found guilty, sentenced, and was awaiting my deserved execution.

After saying good-bye and I love you to Doug and Kim, I was wheeled to the operating room. My vague memories of the preparations in the cold operating room included insertion of an epidural catheter, signing my consent for participation in some prebiopsied pancreatic “tumor” research, placement of anti-embolism stockings, burning in veins.

I awoke immobilized, a POW inside the enemy lines. I heard women talking in the background, fussing with some of the tubes around me. I attempted to make contact with these people, to express the severe pain I was experiencing.

I was ignored. I passed out.

Time passed. Intermittently conscious, I repeatedly tried to contact the enemy to express my distress. Finally, I was told by the guard that I shouldn’t be having pain since I had an epidural.

Apparently it wasn’t working. Hours drifted by as I fainted in and out of consciousness. Finally, when I started moaning loudly—or maybe just screaming, the anesthesiologist came in and realized that the epidural must have failed. He began to administer some pain medication, the first since the surgery. Divine mercy had intervened on my behalf. I realized I wasn’t literally in the hell of a POW camp but in the recovery room after the surgery.

Once I’d been moved to my room and given a button connected to a machine to self-administer pain medication, I dosed and dozed in and out of consciousness, never more than 25 percent relieved of the pain. Many days later, Doug told me I was barely recognizable. My head was the size of a large pumpkin; my tongue was engorged, cracked, and very sore. He sat with me throughout the night, pushing the painkiller button when I couldn’t and gently wiping my tongue with glycerin swabs.