A Kick-Ass Fairy: A Memoir (29 page)

The following Sunday, I walked down the church aisle with my bandaged hand resting on Carly’s shoulder, my finger bandaged in bright white gauze, and even though it was my index finger, it still looked like I was flipping the bird at the world. Carly, with a tanning-bed tan, was dressed all in white, her pale blonde hair glowing like an aura of angelic light. Carly, Brad, and the rest of the candidates received the Sacrament of Confirmation from the bishop, regardless of attendance, whether they had gone on the mandatory retreat, whether they believed or not.

Then I spent four weeks in a ninety-degree hand splint, two weeks in a forty-five-degree splint and another two weeks in a straight splint. I knew from the moment I cut my finger that my guitar days were over, at least for a while. While I was still wearing the straight splint, Doug, Brad, and I went on a long-planned, two-week tour of Italy. Home again, with the splint on and off in varying degrees, Doug and I began preparations for celebrating my fifth anniversary of life after a diagnosis of pancreatic cancer. We did parties well together.

I was well into the planning stage for the “Stayin’ Alive” disco party when a regular CT scan showed a lesion on my lung that would need to be watched. I was to be scheduled for a follow-up scan in the late summer. I tried to put it out of my mind.

At the party, I found it interesting that I was congratulated so many times. Was it for “surviving” for five years? What did I do? I had nothing to do with it. Did my actions change my fate? Maybe a little, but I still smoked. I believed it was grace, or luck, or just that my time here wasn’t finished. I personally did not believe I deserved congratulations, praise, or reverence for waking up in the morning. But then I’d thrown a celebratory party, so what did I expect?

In September, Kim started graduate school, Brad started his junior year of high school, and I started another year as a Bible study group leader and a confirmation teacher.

In October Doug, Brad and I flew to New Jersey for Nancy’s first wedding, at age 49. Two weeks later we flew back for Doug’s younger brother’s funeral. At age 38, he had finally succumbed to the brain cancer that first appeared at age 4, treated by over-radiation to the tune of fifty thousand rads and then a lifetime of growing new tumors. Doug and I invited some of his family for Thanksgiving and his mother to stay on through Christmas and New Year’s.

Almost immediately after touching down in San Francisco after the funeral, I was told I would need to see a thoracic oncological surgeon for the 1 cm tumor at the bottom of my left lung, the one they had been watching, the one they suspected was lung cancer. I also had an arachnoid cyst in the left frontal region of my brain.

The next week I resigned as a leader in the Bible study, as a teacher of the confirmation class, and as a singer in the Sunday choir. I also stopped calling my mother.

Chapter 27

October 2006–March 2007

October 21, 2006

I met with the oncologist about the new lesion in my left lung. She explained that it could be something infectious like tuberculosis, which is seen in people like me with compromised immune systems. I asked her if all the other little spots are also time bombs? What about all the little spots on the liver?

I asked her a ridiculous question. “Am I ever safe to just live?”

I turned this latest news into immediate self-deprecation by announcing to the doctor and her nurse, “Well, aren’t I just the poster child for an idiot? She survives bilateral breast cancer and pancreatic cancer and then dies from smoking! Just put a sign on my back that says ‘IDIOT.’ Maybe I am not humble enough, so now I should be humiliated.”

Then Dr. T. kissed me on the forehead and said, “Let’s just see what happens.”

It is interesting to me that back in June I requested a CT of the chest since it was mysteriously not ordered as part of my routine follow-up since March 2005. Now, 1½ years later, here we are.

October 24

Instead of compassion and support from some of my longtime friends, I am being criticized, judged, and admonished.

“Well, what did you expect? You smoked!” one of them said.

I smoked, therefore I deserved this! No mercy.

Maybe I should have known better, but in spite of all the claims of people who don’t really know me and who think I’m strong—am I? What is it to be strong, to face the unknown, even though you really don’t want to? Is strong not blowing your brains out when you are too weary to face any more? Is strong forcing yourself to function as a mother, spouse, and friend when you really don’t want to get out of bed?

So now Linda the strong, Linda the inspiration, Linda the hero, is a fraud—nothing before even matters. She is really weak, imperfect, damaged goods, despicable. What a riot! I guess I’m just a hypocrite.

I remember when Christopher Reeve broke his neck jumping with that horse. Did people make a big deal that horse jumping was dangerous? No—he was a hero for surviving and being a spokesperson for spinal cord injuries. His wife Dana died of lung cancer. It was very important to know that she never smoked—so she was a victim, a hero? I don’t understand what our society values. I surmise it is all right to be a victim of cancer—unless you had a hand in your fate. Since when were we all supposed to be so perfect? When did people begin to believe anyone was, is, or ever will be? We are all weak. We are all imperfect. We all live imperfectly, suffer and die.

October 27

Still battling this addiction, but I am smoking less. I feel sad, scared and angry—really on the pity pot.

I caught a couple of minutes of the show Mother Angelica on EWTN. She was talking about someone dying of AIDS. She claimed their illness was caused by their “sin.” However, if the person repented and was truly sorry for their sins then they would see Jesus and have eternal life. Her commentary sounds a little old school to me. Back to the eternal question—Why do we suffer?

Yesterday I was exhausted. I saw the Chinese MD/acupuncturist. She said I have too much phlegm. She said phlegm causes cysts.

I asked if I was born this way.

“No, it is from lifestyle—smoking, dairy products, too much sweets.”

Is that over a lifetime? Does that go back to baby formula, my mother smoking when she was pregnant? Aren’t we all influenced by the chemicals or exogenous materials from the moment of conception? Were we even perfect at the moment of conception, or is there toxic DNA—genetic mutations, undesirable recessive genes to consider? I guess all we can do is the best we can with the hand we’ve been dealt and try to make good lifestyle choices.

But then how can you explain Dave’s death, or anyone else that dies an accidental death? So, obviously, when someone is “perfectly” healthy, young, not toxic, not diseased, they can still can die. It all seems pretty random to me.

I guess you could conclude that living is the problem. Random events and circumstances, bodily chemical processes, things we do to ourselves, things that happen to us from our environment that are beyond our control. What’s funny about all of this is that we wind up at exactly the same place—dead.

I suppose you really have to focus on all the clichés—the journey, rolling with the punches, how you play the game.

I think we need to focus on what we leave behind. What is our character? What kind of parent, spouse, friend, sister, etc., were we? How did our existence affect the community?

Obviously, if you are an athlete, movie star, CEO, philanthropist, artist, musician, architect, you will leave behind a legacy of fans, testimonials to your life’s works. But what if you are nobody, did nothing notable, or, like my brother-in-law, never really had a chance to live? Surely the handicapped impact the lives of those they touch in ways we cannot calculate. Are they the angel sacrifices sent here for us to see the truth or to learn something different?

During the week before the surgery, I played out every scenario in my head. What if this is nothing—a fungal infection or a bacterial infection? Well, in that case, I will be angry that I had to surrender to the sacrificial altar of a modern hospital operating room for nothing. What if it is cancer? If it is lung cancer—well, the culturally accepted answer is that you did this to yourself, and after the surgery you will be ostracized, whispered about, and punished by everyone who “loves” you for creating this problem in the first place.

If it is any other kind of cancer … well, let’s take a stroll through the choices. If it is breast cancer in the lung—that wouldn’t be a great prognosis—metastasis, chemo, advanced breast cancer, no hair, feeling like crap: yack, yack, yack. If it’s pancreatic cancer … that’s not a pretty picture either. Maybe it can be a metastasis from a yet-to-be-diagnosed cancer elsewhere in the body. None of these scenarios is a win.

Maybe while they are operating on the lung, I can have an embolism to the brain and wind up like Terri Schiavo, completely brain damaged, a vegetable. Do I even want to wake up and find out the answer anyway?

But then I thought of my children, the thought of leaving them behind to grieve and suffer. I knew then that I was responsible if I didn’t fight to live. I had to live for Kim, for Brad, for Doug. I absolutely did not have to live for me.

Right before the day of surgery I found out that Brad had emailed all of his teachers at school using parts of an email Kim had already sent out to about five hundred friends and acquaintances. All of these emails were requesting prayers for their mother. My heart felt the horror that this situation must be creating for my children. I felt so sad for them.

The night before the surgery Kim came home for dinner. We were all going to the hospital in the morning together. I was still not in a great place mentally or spiritually, but the clock ticks away and before you know it, time is up. I knew what it felt like to be a dead man walking, knowing yourself to be innocent, but that it doesn’t matter; your fate has been sealed.

The admission process was the usual clinical, personal connection–free pre-op assembly line. The surgical resident introduced himself and brought my consent form to be signed. The wrong lung had been identified for the surgery, in writing. Whoops, what do you expect with a 50:50 chance? He was nonchalantly apologetic. I hoped they would notice the ink mark Doug had drawn on my back that morning to mark the line below which they could cut that still would allow me to wear a backless dress. Better yet, maybe they would consult the films from the tests.

They injected the IV with Versed, and before you knew it I was whisked away. I remember asking Doug to tell the kids how much I loved them—and then I fell off the cliff.

Before coming home five days later, I learned they had removed a 1 cm large cell adenocarcinoma of the lung using a robot. It was lung cancer, but so small that it required no further treatment.

My mother-in-law arrived for the holidays six days after my surgery. We hoped the change of environment would ease her grief. She arrived with our nephew.

Doug spent my first week of my recovery at home chauffeuring our nephew around Northern California in search of surfable waves. When Doug was home, he was cooking and doing dishes for his mother, nephew, and a few days later, his sister and brother-in-law. His brother and his family also came for Thanksgiving dinner, which meant all the grandsons were together for the first time. The youngest was 14.

By then, however, Doug’s mother had a horrible respiratory infection and a constant, rattling, wet cough.

At Thanksgiving dinner, Doug led a prayer of thanks and words of remembrance of his brother Joe, which was immediately followed by my mother-in-law’s erupting into explosive crying and wailing, bereft with grief. She abruptly left the table and sequestered herself in her room for the rest of the day. My sister-in-law dominated the Thanksgiving meal conversation; she was depressed, saying that she was not happy with her life. The rest of our guests spent their visit drinking wine and quarts of vodka and chain smoking in the backyard at every opportunity. Waking up in the morning to a bedroom that smelled like a bar from the seventies, I explained to my guests that I was trying not to smoke—since I had just been diagnosed with lung cancer—and asked if they could please move up the hill to the pool.

My mother-in-law told me, “You better not smoke or I will slap you—cough, cough.”

While the insanity of having all these guests was managed by my husband, for me the distraction and constant shock of glimpsing their lives helped to veil the utter despair and hopelessness I was feeling. I started smoking again, lung cancer diagnosis and all. How pathetic can you get?

The night Doug took the group to the Warriors game, Brad caught me smoking in the backyard. He stopped in his tracks on the walk behind the house, shoulders slumped, and looked as if someone had told him there was no such thing as hope. I felt so ashamed that I had really let him down. I asked him not to judge me and told him that I was very depressed. I told him that it was extremely hard to live with continually being slammed down and feeling like this was the way the rest of my life was going to be. I told him that the only reason that I could even get up in the morning was because of him. I was living for him.

I think he might have thought I was contemplating suicide at that point.

“I would rather have a sick mother than no mother,” he said.

I told him that I was grieving and that in time I would feel better. He didn’t know that I was only able to even get to this point—from wanting to die—thanks to the hours spent on the phone with Clara since the surgery, who was working tirelessly to talk me down from the ledge. She and I had concluded that Brad was the only thing worth living for at that point since Kim was already somewhat independent.

I was in so much anguish myself that I couldn’t see the terror, despair, and turmoil this was creating for my teenage son. He just wanted a mother—and certainly not one that clung to him for life. To prove a point about my ability to quit smoking, he declared he was no longer going to eat chocolate. And he hasn’t to this day.

Once Doug’s siblings and their families left, his mother and nephew rented a car to continue to search for the waves, even though my mother-in-law was getting sicker. After almost two weeks of being at others’ beck and call, Doug began to implode. He wasn’t feeling well either and was annoyed that there was no one to take care of him. What did I expect—he should take care of me, attend to his grieving mother, his own grief, and be the ultimate host? I assessed his efforts as pretty good overall, although I was really on my own.

I escaped by hiding in my room, watching the first and second seasons of Desperate Housewives on DVD. Doug returned to work. Our nephew was about to leave and I suggested to Doug that his mother should leave as well. She was very sick, unable to fend for herself, coughing all over the house, and did anyone care that I just had surgery on my lung? Doug did not think it was kind to send his mother home in this condition. He felt bad about her grieving. As a compromise, I suggested that he should take her to the doctor.

So, before I was supposed to be driving, I wound up taking her to the doctor, to the hospital for X-rays, to the pharmacy for antibiotics. While we were at the doctor, I asked him to look at this area of my back that bulged when I breathed. It looked like a little balloon under my skin that inflated when I exhaled and deflated when I inhaled. He thought my ribs might be broken.

My mother-in-law and I went home to our respective beds until Doug came home. After her antibiotics started to do their job, at my insistence Doug bought his mother an airplane ticket. I agreed to tell her that I wasn’t well enough for a visitor and she would need to leave.

She has not been back to California. I do not feel guilty.

December 4, 2006

Monday I heard from Brian, the oncologist’s nurse, that they wanted to collect all of my tumor pathology and have it looked at to determine—what, I don’t know. The pathology is at three hospitals. There are four primary cancers, a rare hamartoma of the spleen, two symplastic leiomyomas, and two parathyroid adenomas.

I spent a good part of the day attempting to arrange to ship all of these specimens to UCSF for assessment, even though I’m sure that they will only be looking at the three adenocarcinomas. I don’t understand why they wouldn’t be looking at everything, since my body seems to grow more than one type of tumor. I’m sure that they are not looking for a cause but are probably trying to ascertain how the three adenocarcinomas are similar.

The upshot was that John Muir Hospital threw out all the pathology from my first breast cancer from back in 1993. They claimed they only store it for 10, maybe 12, years. Twenty-five percent of my malignant cancer history is now in the trash. What about research? Maybe they could offer the pathology to the patient before they throw it out. Someone should start a business for this. I am living in the age of cavemen.

The day after Christmas, Doug, Kim, Brad, and I went on a weeklong cruise to Mexico. My emotions were out to sea, calm, smooth, smelly, misty, murky, stormy, violent, and dark, cycling over and over, sometimes within minutes. After returning home for a couple of weeks, I got back on a plane and spent most of January at a friend’s condo in Kauai by myself. I had to take the time to reflect and process the latest cancer diagnosis, analyze the questionable support from long-term friends, consider the reactions of my family, and most important, consider how I felt about all of this. Even though I didn’t require further treatment, it was another cancerous tumor, another type of cancer, and another surgery.