A Kick-Ass Fairy: A Memoir (24 page)

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

July 2001–July 2002

T
he 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.

Before treatment began I went down to UC Santa Barbara to visit Kim and to attend the parent orientation for transfer students. I was emotionally numb and could barely walk, lightly tiptoeing so I wouldn’t feel as if my insides were ripping apart. Kim informed me that she had decided to pursue a women’s studies major. I managed to help her with her class scheduling and really enjoyed seeing her, but she would be truly on her own once again. Mommy was checked out.

When I returned home, we drove Brad to Aviation Challenge Camp, and Doug and I spent a few days in Yosemite. I usually needed the ocean to put my life into perspective, but Doug needed the mountains. The majesty of the Sierras, the timelessness of the Yosemite Valley, the uncorrupted vistas of millions of years, helped me to realize that I could get through the next six months of treatment. After all, I thought it was a drop in the bucket in the scheme of eternity. I refused to focus on the fatalism of my prognosis. I continued to pray for grace.

Chemotherapy treatments scheduled for every three weeks began in August. In between my first and second chemo treatment I underwent the surgery to place a vascular access port in my chest, since my veins were shot. This was the fifteenth time I was rolled into an operating room in seven and a half years.

Brad’s school year began at about the same time, with all of its associated busyness. Doug decided to be the head coach for Brad’s soccer team, which would involve evening practices and weekend games. In between driving to school, preparing meals, and going to doctor’s appointments, I was dragging. I felt horrible from the chemo, exhausted. As usual, everyone else’s life had moved on, the parades were over.

I turned to prayer with renewed vigor in an effort to find some comfort, peace, and quietness of mind. I returned to Mary by praying the cycles of the Rosary ever more fervently. “Hail! Mary, full of grace, the Lord is with thee.” Mary, the ultimate mother, the mother I needed to get through this. Mary, mother of Jesus, my loving mother, pray for me, pray with me, be by my side, help me to not go insane or abandon the ship.

Mary answered me. You are a mother too. You can still be the mother your children need and I will be there for you.

I needed to live for my children.

Oh poor, poor Mary, the mother of Jesus, having to watch in horror all of the events of her son’s passion, being at his side for his death. This was the worst thing that could happen, the pain and suffering of having a child die, regardless of their age. This was to me, the horror of the most horrible. This perspective helped me remember that I would look to the future, knowing that this particular time, like all the other trying times, would pass and that there can still be good times. I wanted more good times.

My friend Robert came for a long weekend visit after my third chemo treatment. His visit was just what I needed to raise my spirits. I was blessed to have such great friends. Then, early on Tuesday morning, while Doug and Robert were en route to the airport for Robert’s return flight to Virginia, my sister Alane called to tell me to turn on the television. A plane had just crashed into the World Trade Center.

I turned on the TV and watched in disbelief as the spectacle of 9/11 began. I called Doug on his cell phone to tell him to turn around and come home, since all the flights had been grounded. When he and Robert returned, we all watched in horror as the disaster unfolded. It was unfathomable to see the first tower, and then the second, implode into a smoldering heap of twisted metal while belching an immeasurable ash cloud of incinerated concrete, glass, and steel. Even worse was the knowledge that in the ruins lay particulates of the occupants, the workers, the victims, who had spent their last seconds of life on this planet there.

Robert and I spent the next few days and nights transfixed, our hopes waxing and waning for reports of survivors. We felt a sense of loss for the devastated families of the victims and were shocked as we learned the details of the terrorist plot. We were paralyzed in utter shock that the Twin Towers, those icons of America, had been destroyed forever. Doug and I used to work on the floors where an entire brokerage company, Cantor Fitzgerald, lost almost every employee. Intermittently, and then increasingly, the stories of tragedy were replaced by reports of heroism, charity, coming together, and rallying, demonstrating that hope still remained in Pandora’s Box after all the malevolent forces had been unleashed on the innocent.

It was providence that Robert and I were able to be together while these events occurred and that I was too sick from the chemo to do anything else. By the end of the week he was able to return home. Even when time seems to stop and we are suspended in suffering or move away from difficulty, the clock keeps ticking, the world keeps spinning, and we all eat, sleep, laugh, cry, love, and die.

September 18

I received a call from my mother, who told me the news that my cousin Claudia’s firstborn son had died in a motorcycle accident. Claudia, her husband, and her son were out for a ride together. She’d watched in horror as his body was smashed and mangled. She found his severed foot in the woods and brought it to the rescue helicopter. She wasn’t allowed to go with him. He was taken to the hospital without the chance for her to say good-bye.

I called her as soon as I hung up with my mother. She was beside herself with grief and self-blame. Life for her would never be the same. The worst that could happen—for her, did.

This was a time of great introspection. The World Trade Center site, a place associated with a good time in my life, was now a pile of ash and rubble. It had represented my youth, my career, my good health, my hope, and a new beginning after Dave’s death. Now Ground Zero seemed like a metaphor for my life.

While I rocked back and forth on the back deck, looking out at nothing particular, I thought back to a time when as children my mother brought my sisters, baby brother, and me to a beach in Long Island called Tow Bay. It was on the bay side of the island, not the ocean side, easier and far safer for four children, even though we weren’t allowed to put more than a toe in the water. All day long my sisters and I gathered these little balls with golden specks in them from around the sand dunes. With these balls we built an imaginary city, an empire of gold, using some of the gold balls as imaginary people in our utopian civilization.

Near the end of this day of great fun, my father met us at the beach after work. We were so excited to show him the empire of gold we created. He asked us where we found all of this treasure and we pointed to the sand dunes. He laughed and proceeded to inform us that these pellets were rabbit turds. Instantly, our entire world of gold turned into a heap of shit. Life, even an imaginary one, could change in an instant, gone in a flash.

I was living in Cancerland—surgery, treatment, and recovery. But at least I was still alive. With the poor survival statistics I had been given but refused to believe, I was keenly aware that my life too could be gone in a flash. I decided that I better start to live life like I meant it, to start doing some of the things that I wanted to do and to get my mind off cancer. I made plans to join the choir, because I loved to sing, but also because it would make me committed to attend church every week. I started going to rehearsals for the chamber choir hoping that singing “For the Love of the Lord” would help me to feel better. Choir rehearsals were once a week in addition to singing at the 10:30 Mass on Sunday.

My angel, my primary care doctor, surprised me with a call at home to let me know he was retiring to care for his wife who had Alzheimer’s disease. He wanted to wish me the best and tell me that he had been honored to know me. I felt so special that he would take the time to call me, let alone tell me that. At the same time I was sad that the “safety” was leaving my team. Who was going to replace him?

I finally met with the genetic counselor at UCSF. She told me that I met the criteria for a few genetic syndromes that they knew about and discussed each of them and how my blood and tissue samples would be sent to the various labs and universities where the studies were being done on BRCA 1 and 2, for Peutz-Jeghers syndrome and Cowden syndrome.

“There’s probable certainty that your cancers are part of some genetic syndrome,” she said. “And even if these particular ones turn out to be negative, it just means researchers have not yet identified your particular syndrome.”

Having some answers might be good, since the implications for my family—children and siblings—were enormous.

I decided to go ahead with the testing finally.

On the night of October 26, after the fifth chemo treatment, I spiked a fever of 104.5 degrees and could barely walk. I called my local oncologist and was told to meet him at the hospital the next day. In the morning, I asked Doug to take me to the hospital, but he said, “I can’t, I have to referee a soccer game.”

I called several friends until I found one at home. My friend Mary took me to the hospital.

I was on the oncology floor of the hospital for two days, though nothing conclusive was discovered even after several tests. I decided that at my next appointment with the oncologist, I would be telling him I was done with chemotherapy. I thought that it might kill me, a heavy price to pay for some assumed but not statistically proved assurance that I would live. And I could no longer live with that.

In the aftermath of 9/11 and pancreatic cancer, I began to wonder, do we always need to have an enemy? Looking at it another way, does having an enemy ultimately make you a fighter? The daily news was filled with Al Qaeda, terrorists, anthrax scares, and the Department of Homeland Security. My own war was being fought in my mind. I wondered if there always has to be a duality—good versus evil, black versus white, God versus the devil, “us” versus “them.” If there is always this sense of duality in our culture, then it would stand to reason that there would always be a hero and a villain.

The current heroes were the Americans, the victims of 9/11, the rescue workers, Mayor Giuliani. The known villains were the terrorists, Osama Bin Laden, the radical, anti-American Muslims of the Middle East. But in my war, what was I? Was I a hero? Was cancer the villain? In my marriage who was the hero and who was the villain? Was I the hero because I was the victim? Or was Doug the hero because he had a choice to flee or to stay? Wouldn’t the identity of the hero and the villain all depend on what side you were on?

Maybe each person’s life is the life of a hero, sometimes recognized, but mostly not. But then I had to wonder, by whom do we want to be recognized? Do we even need to be validated by others, as are athletes, movies stars, politicians, our modern day heroes? What was the “golden fleece” for all the rest of us—the trophy, the memorial, the tribute, the medal, the ribbons and statues for the mantel, the reward and recognition? What is that saying—“If you’re not a somebody, you’re a nobody”? There are no parades for surviving cancer, beating the odds, or living with any chronic illness for that matter. But isn’t each of us longing to be honored, loved for being special, uniquely able to navigate through each day?

I wondered who is it that punishes the villain—God, the Fates, karma? Are we all like the World Trade Center, punished like the phoenix, burned to the ground, only to rise up from the ashes over and over again? The unceasing cycle of death and rebirth begins again, I decided, just more frequently for me. I had to wonder just what exactly I was being punished for. I was not able to make any sense of it.

I decided that maybe the point is nobody truly ever gets it. That might be why there are myths, religions, wars, stories of human and supernatural dramas to help us to understand, ultimately, the basis for all the duality. I wanted to understand the ultimate question—What is the meaning of all of this?

I felt so lost, so alone, so I wandered further back to the church, to Bible study, needing to find something more concrete to believe in. If I was being punished by all of this horror, I wanted to amend, repent for whatever I did to deserve this. Maybe I was bargaining, who knows.

Lyn and I got a few women together for a healing prayer circle at church. It was a very intense experience. In a very loving environment we all began to pray; eventually a couple of the women began praying in tongues. I remembered vocalizing that I could not see the light or love of God inside of me, barely a faint flicker. For the next ten minutes or so we all focused on this. One of the women told me that God’s love for me was enormous but that I needed to love that part of me, myself. I suddenly felt that for eighteen years I had been punishing myself for Dave’s death and for living after having sworn the lover’s oath that I would die if anything ever happened to him. I absolutely knew at that moment that his death was not my fault and that I lived for our daughter. The emotion of the release of all of that imprisonment was very intense.

Later in the prayer circle, now in a meditative, contemplative state, I saw myself in a small sailboat in a very calm lake. There was no wind so I couldn’t tell in which direction the boat would go. I decided to leave it up to God. I was safe in the boat, floating, not sinking or struggling. The lake was calm. Maybe I could begin to forgive myself for self-punishing and stop the storm within my mind.

Since I had quit the chemotherapy, knowing in my gut that it was the right thing to do to begin to recover, I needed to put my house back in order. That meant addressing the mountains of doctor and hospital bills that had accumulated over the course of the past six months. In that time there were four hospital admissions and too many tests and appointments to count. I soon discovered that this was one of the reasons that my path had led to becoming a CPA, since it required that methodical, auditing mindset to make any sense of all of it.