A Kick-Ass Fairy: A Memoir

by Linda Zercoe

  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 motherin-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, bur
ning 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.

  The next morning, I was conscious enough to realize I had survived but didn’t know what they found. My body had become the war zone. I had a central venous line in my neck, IVs in both arms, was on oxygen, in a bed that pumped air, had a catheter for urine, a tube draining my stomach with a puncture hole, a tube going into my small intestine with another hole, a tube and associated hole coming out of my liver, a couple of Jackson Pratt drain tubes, more holes and an incision running down the entire length of my abdomen—with no staples, thank God. It felt like someone had broken my back in three places.

  As I became more alert I realized that I couldn’t see well and asked for my glasses. They were missing and assumed lost somewhere post-admission. I was in a haze of disbelief, spared execution but now awaiting the next round of selection, the results of the pathology.

  On day two, the surgeon told me that my spleen, which they had removed, had completely become a rare benign blood tumor called a hamartoma. I remembered the resident saying that there were approximately 185 documented cases of this type of thing. I was asked to sign something giving them permission to study this fine specimen. Their enthusiasm for this “gift” of my body part reminded me of the character Renfield from Dracula and his obsession in procuring and delight in eating spiders and flies. Maybe I should have sold it on eBay to the highest bidder.

  The results of the pancreas pathology revealed that I had a small tumor, a new primary adenocarcinoma. We were all still waiting for the results of testing the rest of the tissue.

  The nursing care on the post-op floor was exceptional. Apparently the rules of the Geneva Convention were applied there. I had never been that needy, totally dependent on the good graces and the compassion of others. Days drifted by. I was made to get out of bed and start walking. Doug arranged for me to have a massage in my room to help with the pain in my back. The masseuse who came couldn’t even touch it. I asked whether I could have an infection from the epidural or if it could be from organ nerves being cut during the surgery, like the phantom pain after an amputation.

  The cruelty of the patient-controlled analgesia, or PCA, machine is that you can press the button for pain medicine all you want, but you will only get the prescribed dose, at a designated interval. After that dose, nothing happens until the machine says you can have more.

  A pain management team was consulted and finally, after some adjustments were made to the medication, I started to feel some relief. I was sent for many X-rays of my back, culminating finally in an MRI. For that, they had to clamp the tube that was draining the acid from my stomach, so while in the tunnel for the MRI, my stomach was filling up. I had to stave off vomiting until reaching my room, where I just made it to the sink in time.

  By the end of the first week after the surgery we learned from the surgeon that there was no metastasis.

  “You are a very lucky girl,” Dr. H.W.T. said.

  He was going to be getting back to us in the next few days to see what further treatment was required. I was a very lucky girl, indeed. The small tumor grew in exactly the right place to cause symptoms. Too bad I felt nothing except unlucky that I had yet another cancer, the third primary cancer. This was the fourteenth surgery since 1993, four more body parts to add to the cemetery of me, which now totaled eleven. And I was probably looking at another round of chemotherapy.

  The anesthesiologist came by to see how I was doing. The head nurse in the recovery room interviewed me for an incident report that she was filing on the two nurses who ignored me in recovery. Security came by and filled out paperwork to file a claim for the missing glasses.

  After a week of staying with me, Doug left for home, and my sister Alane took his place in helping to care for me. She helped me bathe, walk, learned about the care of all the tubes, the flushes, and the feedings that were going directly into my intestines.

  While she was caring for me in the hospital, Doug helped Kim move. She had been accepted by the University of California at Santa Barbara, had rented a room in a house of women on a street overlooking the ocean, and was ready to start looking for a part-time job before classes started. She had accomplished all of this completely on her own. I understood that she needed, finally, to get out of the house, away from the gloom and doom and away from cancer. I was sad, glad, horrified, and proud of her all at the same time. She was gone, my baby.

  Over the next week I was gradually able to decrease the pain medicine, go to the bathroom, shower with all the tubes, and walk the halls with all my baggage in tow. While walking through the halls I saw several pancreatic cancer patients who had had the same Whipple operation, but only to relieve some of their pain. They were jaundiced and didn’t have a good prognosis. They were going to die, soon.

  I started feeling a little bit lucky. I guessed it was all a matter of perspective. The intermittent chatter in my head repeated, What are you complaining about? Think of all the people in the world with no arms, no legs, worse off than you, stupid!

  The surgeon told me I was scheduled to consult with an oncologist in a few weeks, and I was discharged after almost two weeks in the hospital. I had a painkiller patch of Fentanyl and many instructions. A nurse was scheduled to show up at the house later that afternoon with all the equipment for my care and feeding. The ride home from the battlefield—in what felt like the equivalent of a Humvee—was treacherously bumpy, as was the next week of recovery interspersed as it was with equipment failure and clogged tubes.

  Alane’s help was followed by a week of Nancy’s care. By then I was more able to get around. Some of the tubes were removed by the surgeon. I couldn’t get over the length of these tubes inside me. I felt so much better with them out, all except the remaining J-tube for continued feeding. I was getting stronger every day.

  After doing much research and reading up on the topic of pancreatic cancer, Doug and I met with an oncologist at Stanford. He had been recommended by the surgeon. We were told that since pancreatic cancer was so aggressive, even though I had a small localized tumor, I should consider receiving 5-FU through a continuous pump into my abdomen for a few months, followed by radiation therapy. This was their standard treatment for adjuvant therapy (for preventive purposes or cure of remnant cancer cells), and this doctor was their top gastrointestinal oncologist. I thought the treatment protocol was a bit antiquated, based upon our research, and I was horrified at the thought of having a thing coming out of my stomach for months.

  He mentioned the survival statistics for my case. I remembered hearing I had a one in five chance of living five years, the same for living one year with or without treatment. My head was spinning (a possible 20 percent battery life remaining, only if
you want to believe it). I wanted to see an expert. He recommended Dr. T., a doctor at UCSF Medical Center whom we had already read about in our research. She was an expert on the little they knew about pancreatic cancer other than what everyone knew—it was aggressive and fatal. I was being sent to the front line once again.

  In San Francisco, the doctor explained that it was extremely rare for a pancreatic tumor to be found at stage I. There were no treatment protocols for this scenario, since there had never been enough people to study at this stage. However, she thought I might want to consider a chemotherapy regimen that used a relatively new promising drug combination called Gemzar and Cisplatin, or else Gemzar alone. The course of treatment would be around six months, I wouldn’t lose my hair and I shouldn’t feel too horribly incapacitated. She did not recommend radiation in my case, since I’d had such a reaction from the radiation years before. She also added that the pancreas is hard to isolate without “sterilizing” the surrounding tissue. I noted to myself that we were still in the cut, burn, and poison stage of medical science, so barbaric, a type of scourging.

  Nobody could answer why this was happening. Did I have a genetic syndrome? Was there some sort of immunological treatment? It was so frustrating hearing “not yet.” I prayed even harder for grace, not strength anymore, not patience anymore, just grace.

  Doug was hanging in there. He was in shock, having just been given his next set of marching orders. His answer to everything was “in sickness and in health,” implying that that was the vow he made. I wondered, exactly when the health part was coming. Well, I thought with a feeling of sadness, he drew his lot when he chose me.

  Chapter 22

  Victims and Heroes

  in the Aftermath

  July 2001–July 2002

  The war had definitely escalated. The nuclear bomb of a pancreatic cancer diagnosis had just detonated in the core of my body. While the prognosis indicated relative containment, the significance of what just happened was not yet knowable. How could I ever feel safe again? I was involuntarily redeployed for another tour of duty. I made the decision to receive the Gemzar chemotherapy treatment alone and have it administered close to home. But I would be followed by Dr. T. at UCSF.