A Kick-Ass Fairy: A Memoir (32 page)

I was given my unique mediation mantra as if it were a large precious jewel. I met thirty or so people from all over the world, each with a story, each wounded and recovering from something. I learned how to meditate, and we meditated twice a day for thirty minutes. The meditation teacher also taught us about the doshas, the constitution each of us is born with—vata, pitta, and kapha. The doshas are derived from the five elements. Vata is space and air. Pitta is fire and water. Kapha is water and earth. Each of these doshas is associated with specific attributes that are natural tendencies, both psychological and physical, of the individual. When the doshas are out of balance in a person, symptoms emerge. I was mostly a vata with some pitta, based on the quick-and-dirty assessment criteria. The topic of the doshas was entirely new to me. This was my introduction into the ancient field of Ayurvedic medicine. I knew it would take years of study to really understand this field.

I learned about agni, the internal fire. When it is strong, it converts poison into nectar. Weak agni converts nectar into poison (ama). We learned about emotional ama. We learned about the philosophy of yoga and practiced the “Seven Spiritual Laws of Yoga” every day. Individually and with partners we did many exercises that focused on our beliefs and went through a step-by-step process that started with identifying feelings and worked toward eventually releasing the emotion.

I sat rapt, and for once not crying, in a darkened room decorated in the beautiful and exotic fashion of India. I was amazed by the presentation of a completely different approach to perceiving and living life. I learned that I had a really hard time even recognizing how I felt. I thought others were responsible for how I felt—on those occasions when I did feel. And this was not true. Just as I wasn’t responsible for my mother’s life, I was responsible for mine. I learned that everyone we encounter is a mirror of ourselves. Also we possess all the qualities we see in others that we admire as well as those we dislike.

Toward the end of retreat, I selected three large rocks on the beach. As a group, we held a ceremony around a bonfire. Then one by one we each peeled off toward the ocean. I put the story of my mother into one rock and then, with forgiveness and love, threw it into the ocean. My second rock was letting go of all the issues around Dave’s death once and for all. The third rock was about forgiving Doug, letting go of blame, and thanking him for being the person who was intricately involved in teaching me how I needed to love myself and others. I left the retreat feeling fifty pounds lighter and signed up for the 200-hour yoga teacher training, which had two other Chopra seminars as prerequisites.

The first prerequisite, Seduction of the Spirit, was held in Ireland. More than five hundred people from all over the world attended, requiring seven translators. The week included twice daily yoga, meditation, Ayurvedic-based vegetarian meals, and nightly activities. I loved it. I felt energized, physically great and emotionally connected to everyone there—seekers on a similar quest to mine. The concepts I learned changed my life, giving me a new understanding of the intersection of spirituality and science, and consciousness and reality. I was blown away with new insights into who we are, who I was. The experience was incredible.

One evening, the activity centered on Deepak Chopra’s nonprofit called The Alliance for the New Humanity. We heard the poetry of John O’Donohue, listened to a Celtic singer and harpist, and heard presenters from Ireland tell stories of how, in spite of hardships and obstacles, each was doing something to make the world a better place. After that we broke up into groups of thirty people and one by one went around the circle answering the question “If you could do one thing to change the world, what would you do?”

I didn’t have to think for more than a second. My answer was that I would do something about cancer, raise awareness, help to find the cause and the cure. Not too big a dream. What really surprised me, however, was that each of the people in the large circle had a different thing they would want to do to change the world. The point of all of this was that if like-minded people could connect through an alliance, critical mass could build momentum to actually change the world. It was exhilarating to imagine going global and that each person could really make a difference—that I could make a difference.

What I also realized on that trip was how grateful I was for Doug. Because of his support and hard work, I was able to have such an experience. I had the freedom to search for answers, even trot around the globe, in my quest for healing and learning who I was and what I wanted. I realized that we couldn’t be on the same wavelength or growing in the same way. He went to work and held down the fort while I had all of these amazing experiences. I could have never have done these things otherwise. My perspective was changing.

Brad graduated from high school that year, and I lived to see it, albeit through the usual rivers of tears and relief.

The same month I thought it was strange that Clara, who never went away, would be calling from a PTA conference in Long Beach.

“Linda, Don is home and having a really hard time with constipation.”

The situation was so weird. Don and I were very close, but not on the level of discussing bowel habits. Apparently, in Clara’s absence and Don’s desperation, I had graduated.

“Don’t worry, Clara, I’ll go to the store and pick up a few things that I think will help, and drop by and see him.”

When I arrived at their house, Don answered the door in his robe, T-shirt and sweatpants. His six-foot-three figure was contorted a bit, for what reason, I didn’t know. His usual joviality was still evident as he hobbled to the sofa in their family room and I followed behind him, but I could tell something was really wrong. As he sat down gingerly, a faint, guarded wince was evident on his face.

“My back,” he said, “it’s been driving me nuts since the trip to Hong Kong in January. You know those horrible plane seats.”

“Yes, I know,” I said and paused for a few seconds. “Well you seem really uncomfortable. What are you doing about it?”

“I went to see an orthopedic doctor. I have an appointment for an MRI in a few weeks.”

Feeling bold seeing him in such bad shape, I said, “Why are you waiting, suffering in the meantime? Call him back and demand that they do it sooner, or go to the emergency room.” I felt like I was overstepping my bounds, but bowels were the stuff of families.

After Clara returned home, they called an ambulance. Within a couple of weeks Don, who hadn’t smoked in more than 25 years, had been diagnosed with stage 4 lung cancer with metastasis to his lymph nodes and the sacral region of his back. The cancer had almost completely eaten through his spine. He really could no longer walk.

I started a Caring Bridge website to update friends and family and allow them to post messages to Don and Clara. Don was in the hospital for more than three weeks while they tried to get his pain under control, gave him ten spinal radiation treatments, surgically placed a port for chemotherapy, started chemo, and fitted him for a brace and corset to stabilize his spine when he could get out of bed.

After talking with Clara and hearing about the ups or downs of the day, I would write an entry for the website. Then I would pick an artist or a letter of the alphabet or scroll through the karaoke menu for songs of loss, anger, or hope, depending on my mood, and start singing. I sang until I felt better or had to go to the bathroom or start dinner or take the dogs out—but usually after just one more song. This was a great survival tool that forced me to be in the moment. For just a little while I wasn’t in anguish, worried, triggered.

Don never lost his wit, his graciousness, his cynical, loveable sense of humor while he was in the hospital, even when his pain was a ten on the pain-o-meter. He was given a tall-man size bed, complete with a state-of-the-art Gore-Tex mattress cover that would prevent pressure sores. Then he was upgraded to a “king suite” room on the oncology floor. The radiology staff all signed a card and presented it to him when he finished the tenth radiation treatment.

When the “king” returned to his castle, I raced my car up the street and beat the ambulance to the house, arriving in time to open the door for them. Clara was at the pharmacy filling his prescriptions. He was wheeled in on a gurney and chuckled when I said, “You look like Hannibal Lecter!”

In between trips via ambulance for chemotherapy and progress MRIs and CT scans, Don held court from his La-Z-Boy recliner for the family members and friends who streamed through the house day after day. Clara was losing weight as she worked nonstop—bathing Don, cooking what he would eat, arranging for his comfort, and hosting their visitors. I listened, researched, visited, meditated and offered advice. I picked up this or that, updated the website, waited and sang.

One late summer afternoon, I sat with Don so Clara could get out of the house. He and I both sat in recliners looking out at the vista of open space viewable from their back deck. The lanai was covered in wisteria well past its bloom but with thick foliage that filtered the sun. It was so peaceful. I wasn’t sure if Don wanted to talk about anything so I just stayed quiet, listening to the sounds of birds and leaves rustling as the warm soft puffs of breeze caressed my face.

I read while he dozed. Then Don woke up and cleared his throat. “How have you gone through this so many times?”

“Day by day.”

I had recently compiled all of his reports from scans—I was the appointed medical interpreter—and made a spreadsheet to track his progress by date over time. Don and Clara knew that I was doing this. I couldn’t tell them that over a very short time the tumors were increasing in quantity, more than three steps backward for every step forward. The prognosis did not look good. Looking over at Don, I could sense that he knew.

“Are you scared?” I asked him.

He didn’t answer. I thought maybe I crossed the line. We talked about how life doesn’t seem to make sense. He talked about Clara, stories about his daughters. Then he was tired again.

I shut my book and thought about Don the man, in relation to me, always accepting, a fan, on my team, such a great sport at all the parties. Don, the guy who’d just retired, was taking classes to learn French, who was learning how to vacuum the house while singing a little jingle in his deep baritone voice. Don and Clara together were the best example of a good marriage I had ever seen, at least from the outside. Don was at ease with himself and the world. I thought about Don the cancer patient, gracious, jovial, always appearing to take life as it came, never raising his fist to the sky. And the medical community seemed to respond well to his personality and temperament. Clara’s manner, too, was no minor consideration in the ripples of love that came back to them.

In the fall, Don entered hospice. I visited the day before he died. This time, at the bedside of someone I loved who was dying, I spoke. “You are one of the greatest men I have ever known. I love you.”

He mouthed the word wow, and tears streamed down his face.

Clara became a widow, and the dark infinite cloud enveloped her. At 61, she believed the best of her life was over. Her two daughters, other family, many friends, and I would do our best to get her through her grief. Life would go on, but for Clara it was her turn to wear the black veil that mutes the world. I hoped it wouldn’t take too long for it to be lifted.

It was the type of day that wraps itself around you and warms you to the core like a hot bath. It had been filled with activities for the orientation for the new students and parents at the University of Virginia. Brad had been accepted at several colleges, and had chosen to attend my alma mater. Although I was afraid to even ask why he done that, I was honored and excited. Overwhelmed by the barrage of information presented at a seminar on all things pertinent to parents and students—security, financial matters, disaster planning—I sat admiring the beautiful hand-painted murals that spanned the walls of the amphitheater in Old Cabell Hall.

I had studied the history of jazz in this amphitheater more than twenty years before, and could remember the stage, the seats, maybe the columns, but I never knew these richly colored beautiful murals were even there. The entire weekend had been surreal. Walking again along the historic pathways I’d traveled more than two decades before, deeply inhaling the smell of the boxwoods, awash in all the greenery, I felt so many emotions, among them a deep sense of nostalgia. Who could have possibly imagined what life would bring my way after graduation.

Doug, Brad and I sat on the steps outside Old Cabell Hall taking a break. Without realizing it, I had tears streaming down my face. Brad noticed. “What’s wrong, Mom?”

I was thinking about how life comes full circle and choked up about Brad going to the UVA. I was so grateful.

“I hope you have a great experience here, Brad, and are able to take advantage of all this school has to offer.” He put his arm around me and gave me a squeeze. Doug looked at me with eyes that I knew said I love you.

Chapter 30

December 2009–July 2010

O
n a cold, wet and gray December day in 2009, Clara, still raw just a little over a year since Don’s death, met me for lunch at our favorite Greek café, Daphne’s. Over a grilled chicken pita sandwich with tzatziki sauce, rice and a salad, Clara updated me on her anxiety over her daughter’s upcoming cervical biopsy.

After several abnormal Pap smears, her doctor wanted to take more tissue to determine whether her condition was more serious. This procedure was scheduled for the following week. Her daughter, like mine, was only 28 years old. I felt very connected to her suffering. We held hands across the table, sitting in a high-backed upholstered booth, just like countless other times, sharing our meal and our lives, oblivious to other diners through the lunch rush and into the early dinner crowd.

My daughter was finishing her graduate degree. More than a year earlier, when Kim had been juggling a waitressing job, an unpaid internship and her full-time studies she wasn’t feeling well. Thinking it was caused by stress, I asked Doug if we could help her out financially until the end of her classes so she could focus on her studies and have some time for balance. Doug agreed, and Kim had gladly accepted our support until the end of the year, which was now just a few weeks away.

Kim had been pulling away during the last few months, calling maybe once every two weeks, communicating pertinent information mostly by text message. I understood why this had to be at her age. I had learned, to my dismay, in a joint therapy session a couple of years earlier that she never had really detached during her teens or early twenties, fearful that if she did and I died, then she couldn’t live with herself. After that, I explicitly gave her permission to focus on herself, hate me if she had to. She didn’t understand that I would still survive without her constant worry and her overdeveloped sense of responsibility for me.

So detaching, I realized, was exactly what she was now doing. Still, I felt a hole in my heart. We had always been so close. Now, although it was necessary for her development, the process itself seemed so extreme. Our infrequent encounters were difficult. She was short with me, snippy, jumping down my throat at every opportunity, but they would always end with her flipping the switch to sweet, asking, “When are you making the deposit, Mom?”

Now, though, our financial support was about to end, as we’d agreed. As I intermittently blotted the moisture welling up under my glasses with a Daphne’s napkin, I said to Clara, “And Kim is going to New York at the end of December—so when exactly is she looking for a job?” I gazed out the window where it was pouring tears from the heavens. I realized that I absolutely had to let go. Kim needed to become self-supporting; I would have to learn to say no. I went home resolved to do just that.

A few days later, Kim phoned to tell me that she had seen the gynecologist earlier that day. She’d gone for a colon cleanse the previous week, and the hydrocolonic therapist had felt a hardness in Kim’s belly that wasn’t poop and thought she might have a fibroid. The gynecologist said she didn’t know exactly what it was and scheduled her for an ultrasound in a couple of days.

Kim was obviously upset and unnecessarily defensive about the expense of having a colon cleanse. I knew she was exhausted from having given the oral presentation of her master’s degree thesis the day before. I stood looking out onto the green lawn through the leaded glass front window, processing all this data. Upon hearing my daughter’s sobs, I immediately thought in horror, Oh my God, she has terrible student health care insurance, the catastrophic kind! Will she even be covered, since she is technically finished with school? Practical as ever, I asked her about the insurance.

She was angry. “Obviously, you don’t care about what I’m saying. You are worried about things that don’t matter.”

It wasn’t true, but even though I intuitively didn’t have a good feeling about the situation medically or financially, I dropped it. I wasn’t going to go “there” yet. Then to punish me, she told me she wouldn’t be going to the Lady Gaga concert with me, as we’d planned. Once again, I let her down.

Two days later, the ultrasound showed a large mass with a blood supply that “looked like Medusa’s head,” Kim said.

They scheduled her immediately for a CT scan, that afternoon, in fact. I dropped everything and met her at the hospital. Driving in the car to San Francisco, I had a premonition that this could be very bad. According to her gynecologist, it was unclear where this large mass with an intricate blood supply was arising from, but it was probably not her uterus. I had to work hard on staying positive and calm.

When I arrived at the hospital, Kim was pale, with big black circles under her eyes. This scene had played out so many times before in our lives, but now the roles were reversed. I could see Kim the adult—competent and efficient, though visibly frightened—but I could also see Kim the child, holding back the tears while trying to be strong, a vision of getting a childhood vaccine, only worse.

After the CT scan report the gynecologist scheduled an appointment with a GI surgeon for Friday. I forced myself to default to technical issues; the emotional issues would have to wait for later. The guardian, warrior, scientist, left-brain thinker was back.

The CT scan recommended surgery to diagnose the origin of the mass. The report’s “impressions” section presented three possible scenarios—all horrifying, but I kept that knowledge to myself. I called my doctor to help us find the appropriate doctor for Kim at my hospital, but she couldn’t help since she didn’t know where the mass was arising from. Different surgeons would handle GI issues, gynecological issues, and bladder issues.

On Friday, the clerk at the GI surgeon’s office asked, “Did we want this put through insurance or pay cash”?

“What’s the difference?”

“The cash price is less since we don’t have to process the insurance, especially if you haven’t met your out-of-network deductible or have large insurance co-pay.”

I gave them my credit card. I sat down musing about the implications of this new “care for cash” model.

The surgeon was a friendly young Asian man complete with his requisite white lab coat. He showed us on the film that this mass appeared “urachal” in origin. We learned that the urachus is a canal in the fetus that drains the bladder of urine and joins and runs within the umbilical cord. Kim apparently still had a fibrous remnant of this canal, which usually disappears shortly after birth.

“This is so symbolic, that even in this I am still attached to my mother,” Kim noted to the doctor, looking at me in a way that I could only interpret as blame.

I followed her into the exam room. When she lay down on the examination table with her pants pulled down to her hip bones, under the young skin between her naval and pubis was a large protruding lump that looked as if an alien was ready to burst out. It didn’t look like a pregnancy; it was too narrow.

“See, Mom, I’ve been telling you that I didn’t feel well.”

The doctor recommended surgery and thought she should probably see a urological surgeon, since this site was most closely related to the bladder. He would try to get a consult with the best person at my hospital as soon as possible.

Kim asked all the right questions. “Do you think this is a cyst? A tumor?”

I wondered how she even knew what to ask? I could see by the look on her face that her brain was calculating like a super computer, analyzing the doctor’s responses, running probability statistics. When I asked a question, she looked at me, rolled her eyes, and turned her attention back to the doctor.

Later that day she was called by an assistant of the urinary oncology surgeon at UCSF, was informed that she had an appointment for the following Monday, and was scheduled for surgery to remove the mass two days later, one week after the ultrasound.

The description of the surgery was frightening. The surgical possibilities included bladder removal, hysterectomy, bowel resection, the loss of her navel, mesh to replace abdominal muscle removal—enough scenarios to make me want to throw up, but not in front of Kim. My daughter’s abdomen would forever be marred with a big scar. This thing seems to be growing so fast, I thought, what if it ruptures before surgery and she hemorrhages to death? What if she has cancer? What if she dies?

I held my breath when I wasn’t sobbing with anxiety and anticipatory grief. At night I sat outside on my back deck, chain smoking while talking on the telephone with Clara, going through each day’s events, hurling myself back and forth in the rocker until, spent and exhausted, I collapsed into bed.

Doug, as practical as ever, kept saying, “We don’t know anything yet.”

I was disgusted to learn that after all these years I hadn’t learned anything. In the avalanche that was still in process, it became obvious that meditation, being in the present moment, witnessing the turbulence of my mind and emotions were skills that I hadn’t integrated enough in practice to have any sound footing. Suffering for what hasn’t happened yet, pretending to be all right, supporting my daughter with words of encouragement—as well as hysterically weeping and rocking back and forth when I was alone—were still my “go to” place. At least this time there were tears, one improvement.

On the day of the operation we sat for six and a half hours in the glass-walled surgical waiting room. We repeatedly looked at each other, Doug, Brad, and me, not saying much, and eventually avoided looking into each other’s eyes for fear of starting each other crying. We were occasionally distracted by the twenty or so family members of another surgical patient who were taking up more than half of the chairs in the waiting room, arguing in Spanish, arm wrestling, playing musical chairs. At around 10:30 p.m. the surgeon came down, dressed and on his way home. You could just tell he was a father even before he told us he was on the way to the airport to pick up his daughter for the holiday. The next day was Christmas Eve.

Searching his face for clues, I could see he was tired but warm and kind. He asked us to follow him to a more private place, causing my heart to pound. We followed him down the hall like ducklings and formed a huddle to the side but in the hall.

“The surgery went well,” he stated. “Kim’s reproductive organs and intestines looked fine and she didn’t need the abdominal wall reconstruction. We removed a large mass.” With his hands he showed us something big and oval-shaped, the size of a mango. He continued, “The mass was resting on the top of her bladder, so we had to remove the dome of her bladder to be safe.” I knew what that meant. “But, that will heal and she shouldn’t notice any difference in her bladder,” he concluded.

“Did she get to keep her naval?” I asked.

“Yes.” He continued, “It will take some time for the pathology to be completed with the holidays upon us, but initial findings were that we could see some spindle-shaped sarcoma cells.”

“So this is cancer?” I asked.

“Let’s just wait and see what the pathology report says.”

I started to cry. I knew what he’d said. I knew how this works. In the hall outside of the waiting room I heard that my daughter had cancer; my husband heard that they don’t know what it is yet; my son heard that the surgery went well, she is fine.

Three weeks later, Kim was diagnosed with an 11-by-8-by-5 centimeter leiomyosarcoma of the urachus, stage III cancer. By the time we heard this news, Kim was already starting to feel much better. “Well, they got it all out,” she said. She thought it was over. I suggested, my heart wincing, that she might want to keep an open mind, since she hadn’t yet seen the oncologist.

She ripped my head off. “No one said anything about seeing an oncologist!”

By the time we met with the oncologist, we had both done our homework on the diagnosis. The information, as we read it, wasn’t good. Kim’s reaction was to become afraid that she was going to die. I told her that she could be the good statistic.

“Why don’t we stop researching this and just take one step at a time?” I suggested.

Together we went to the oncology appointment at USCF. I already knew this oncologist as I’d met with him after my lung cancer diagnosis. My memory was that he was a kind, jolly sort, short, balding, French, I think. He was a straight shooter and did his homework. When he entered the room he was noticeably frazzled. He remembered me. When I had seen him three years earlier, he’d said, “You have nerves of steel” and “You ask a lot of questions that I can’t answer.”

The oncologist recommended aggressive chemotherapy treatment, one week in the hospital, two weeks outpatient, one week off, every month for six months, no radiation. He was a lung cancer specialist as well as the head of the sarcoma center. In fact, he was the sarcoma center.

I was verbally smacked down by Kim every time I asked a question. I wanted to walk out, this was hard enough, but then as Kim had been saying, this wasn’t about me. It soon became clear that I couldn’t do anything right, say anything right. Kim didn’t want to know what I knew from experience. She soon let me know in no uncertain terms that she wasn’t me, didn’t want my life, this was her experience. I was now the support person, the unwanted caregiver. This was my daughter, grown up, multidegreed, frightened for her life, lashing out.

After that appointment, I thought we should get a second opinion on the treatment for her. I knew that her type of cancer was hard to treat. I wanted the recommendation of someone on the leading edge of this type of cancer, either at MD Anderson or at Memorial Sloan-Kettering. Kim accused me of trying to undermine her trust in her doctor. I told her, “I’m alive because I don’t put blind trust into the opinions of doctors.”

“I’m not you,” she reminded me, again.

Kim was told that because of the aggressiveness of the treatment she might never be able to conceive a child. The chemotherapy would kill most of her eggs and potentially damage the rest, and might cause her ovaries to stop functioning altogether. After meeting with a fertility doctor, Kim wrestled with whether she should go through fertility treatments and harvest her eggs, and then either freeze the harvested eggs or create fertilized embryos, which would require finding a sperm donor. To me, all of this was overwhelming, even on top of all the other things that were overwhelming. It was another big issue Kim had to address as a young adult diagnosed with cancer.