A Kick-Ass Fairy: A Memoir (34 page)

In July, Kim and I had our scans on the same day. A week later, on my 53rd birthday, we would receive word of the results at our appointments with our respective oncologists. Kim was now finished with chemo.

Both of our scans were clear, and we went out to lunch to celebrate. Earlier in the week, we’d finally found out that Brad tested negative for Li-Fraumeni. After holding my breath for a month I was jubilant. Now we had a trifecta of good news and my birthday dinner was truly a celebration for our whole family. We toasted with flights of sake at Ozumo in San Francisco.

I had to discount that sharing scans, oncology appointments, and a bad gene was now the new normal, not to mention a macabre way to bond with my daughter. But I thought, It’s a hell of a lot better than some of the other options. We were still alive and able to continue the untangling, redefining, and refining ourselves and our relationship with one another and with the world. Who thought I would live to 53? And each month and year that Kim makes it will truly be a gift to be cherished—especially if the gift that is my daughter is her own person, separate and rooted to the earth in her own way.

Chapter 31

October 2009–June 2010

I
finished all the prerequisites, completed the training, performed hours of practice teaching, was tested, and became a “Seven Spiritual Laws of Yoga Teacher.” I never had any intention to teach yoga. It is a wonderful practice for integrating the mind, the body, and the spirit. I felt much more grounded and was toned and in great physical shape. One of the challenges of my life was to become disciplined and have a routine. But much to my detriment, practicing yoga and meditation had to be scheduled and this wasn’t a top priority during Kim’s treatment. It certainly would have helped, if only I had thought about it.

I continued singing, and we hosted another karaoke party for a group of Doug’s co-workers. In between yodeling and oompah music, the teams of Munich, Berlin, Dresden, and Frankfurt competed for the top karaoke group prize at our own Oktoberfest. Guests wearing alpine hats and lederhosen or dirndl skirts chugged from beer steins. Doug wore a Nordic tribal outfit with a wolf cape. I was dressed in “über-chic”—military boots, liquid leather leggings, a bullet collar, white wig, and long Matrix-style coat. Doug got a kick out of it when one of the young attendees, almost thirty years our junior, commented to him, “She’s a keeper.”

Many times during the evening, people asked why we had such a professional karaoke system. At some point, later in the evening, my answer to this question became “I’m thinking of maybe starting a nonprofit.” The party was such a success that the wheels started turning in my mind. Why not bring this kind of experience to people who are being treated for cancer, their caregivers, and support personnel? What a great way for people to be in the present moment and remember that life can be really fun even in the midst of cancer.

The following week I called one of my friends whom I used to sing with in the choir. I told her what I was thinking about doing and asked her if she knew anyone who could sing and who would want to form a karaoke group. I was envisioning that we could sing a cappella (without accompaniment), and then as a karaoke group we would get people warmed up so they were encouraged to do it themselves. We had to sing well enough not to embarrass ourselves or be too painful to listen to, but not so well that we would intimidate people or make them afraid to sing.

My choir friend introduced me to Ellen. Like most of us, Ellen wasn’t a singer, but as it turned out, could sing. She had a master’s degree in piano performance and pedagogy (a fancy word for teaching methods and psychology). She had been a college professor and could play the piano to save her life. She was currently working as an accompanist to several opera companies and classical vocal performers. I wondered why she would want to join my little ragtag group.

Ellen was reserved and, not surprisingly, nervous at first about singing. I soon learned that Ellen’s only daughter, Jennifer, had died very quickly only a year and a half before, at age 24, from a particularly vicious type of leukemia. Ready to venture out with a baby step, Ellen was attracted to the idea of the nonprofit, but more important, she was interested in the technical aspects of a cappella singing. She decided to give us a try.

Once we enlisted a soprano who could blend, we started working on music arranged for women’s four-part a cappella. Under my direction we began practicing twice a week for an hour and a half each time, learning traditional barbershop songs. I sang the low part. Ellen sang a little higher. My choir friend sang the lead, or melody, and our soprano sang the high part.

Ellen was always on time. She came ready, having practiced at home, dressed and made up for an outing. I usually had just tumbled out of bed or the shower, pulled on yoga clothes, and skipped the makeup.

It took us quite a while to master a tune, our own group dynamics soon becoming the most challenging part. Ellen was interested in phrasing and musical dynamics, wanting to closely adhere to the instructions such as forte, pianissimo, staccato and resolving a held note in a swell to diminishment. I had wanted this endeavor to be fun, but within three months this was no longer the case. The lead proclaimed that my vowels didn’t match (blame my New Jersey accent), my voice was dark (I had always heard that it was rich), and I didn’t breathe in the right spots (I was suffering from allergic asthma at the time). I felt beaten up.

Ellen soon felt comfortable enough to start commenting on the technical aspects of the piece. I had to spend many hours reflecting on the ego of artistic performers, what I owned and what wasn’t mine, and how to improve the group dynamics so that I could get back to the goal of having fun. I learned that to sing well a cappella, the four parts have to vocalize the vowels the same way, although there is no one right way. The group needs to breathe as one being, again with the time for breaths being negotiable.

Finally, though, we were making beautiful harmonies. Sometimes during a song, the pitch, tone and intonation was so perfect that it felt like we were singing with the choirs in heaven, my body would shudder, and I would get goosebumps. I would look over at Ellen. We’d smile at each other with our eyes, knowing we were one—although we were criticized for it by the lead singer. She said we should never look at each other. We decided to ignore her. After many months we were ready to perform.

We performed our first “show” at the Wellness Community, now known as the Cancer Support Community. I packed all the equipment into the truck, and with the help of the husbands unloaded it all and set it up at the center. I presented my prepared talk about the journey of cancer from diagnosis through not knowing how the story will end. I had no experience in giving a presentation to a large group, and I had certainly never sung in front of one. I knew I was nervous when my mouth felt parched and I required many breaks for water. I think I drank a gallon.

We had chosen a popular song to sing that fit with each section of the talk. We sang “Help!” We sang “Blowin’ in the Wind” in three-part harmony. During the karaoke portion, sometimes the rest of us were backup singers for Ellen and several times I sang the lead. I think we sang eleven songs with accompaniment besides the two we sang a cappella to open the show. The hit of the night was my rendition of “That’s Life” à la Frank Sinatra, complete with fedora.

Everyone seemed to love what we did and we received a standing ovation. Then it was time to implement my plan to get everyone up to sing. My mission was similar to the ending of Dr. Seuss’s The Grinch That Stole Christmas—all the Whos in Whoville singing together after the Grinch has done his worst. Soon, the village of the Cancer Support Community was singing and celebrating, despite the “Grinch” of cancer. People had their chance to shine individually, to be in the spotlight and give voice to their experience by choosing happy songs, sad songs, or songs of hope. It was great fun, and our mission was accomplished. We had succeeded in bringing some joy to Whoville.

One of my former therapists, who was working as a facilitator to a support group at the center, came over to me after the show. “Linda, that was great. Glad to see you are doing so well and that you and Doug are still together.”

Yes, that was another hard-won success.

We had to suspend performances during Kim’s treatment and recovery, but United We Sing—Together We Can End Cancer nonetheless became incorporated as a nonprofit. Jacqui signed on as the CFO and Clara as the corporate secretary. Once Kim was finished with treatment later in the year, we renewed our efforts singing and raising funds for cancer research.

Over that next year, Ellen and I became very good friends. She’d grown up in the Deep South, so both of us had regional accents. (“That makes us special,” I said.) We were the same height, the same size, even born the same year within a few days of each other. We both loved to read and watch independent films and discuss them. She liked yoga and loved the outdoors.

We had so much fun singing together. Some nights when Doug was away, I’d invite her over to sing karaoke. That was when she reintroduced me to pot, something I hadn’t tried since the incident after Dave died. She was a connoisseur of marijuana. I was tentative at first, afraid of going over the cliff again. Two hits later—wow—for the first time in months I wasn’t worrying. It was like the top of my head was numb—nothing bothered me, the mind chatter stopped. It felt great. To absolutely everything, my response was Ah, who gives a shit!

Under the influence, one night we sang the entire collection of the Rolling Stones, worse than Mick. Another night we sang sixties one-hit wonders, and another night drug songs. We harmonized, taking turns singing melody. I had a hard time scrolling through the now ten thousand songs on the machine. The pointer on the mouse moved like water sloshing out of a bucket. I would usually forget what song we were originally looking for in the midst of scrolling and we’d laugh our asses off. One time she must have brought a particularly powerful joint—either that or she wanted to sing alone—because I couldn’t sing. I just stood in front of the microphone with my eyes closed, hitting the tambourine maybe once every sixteen beats. I had a great time nonetheless.

One day she gave me a baby pot plant as a gift. I had no idea what to do with it. She said she would coach me. I potted it, mulched it with chicken manure, set it up on the hill in full sun, and watered and cared for it like an infant. What the hell was I doing? My husband told me we had gophers in the yard again that year, and after running up the hill to check my pot plant, I saw they had taken out the squash. The tomatoes were next. I called up our pest control service for them to take care of the gopher problem.

When the guy came over to deal with the gophers, he commented, “I like your herbs on the hill.”

Rather than responding with something like You know my daughter has a medical marijuana card, I went hmmph, thinking, Who gives a shit what he thinks?—and this was without smoking it! I haven’t and never will become a pot head, but I have definitely experienced the benefits of medical marijuana. Unfortunately, before a year was out, I had to stop smoking it—it bothered my lungs too much.

Ellen helped me to get out of my head, but I also knew I needed to get grounded. Though I had proclaimed the year 2010 to be a year of adventure and connecting with nature, I hadn’t had much of a chance to do that. Ellen asked me if I would be interested in hiking. I thought, what a great way to connect the body and soul to the great mother earth. After purchasing all sorts of what I deemed necessary equipment—a camelback, fanny pack, BPA-free water bottles, hiking shoes, hiking socks, UVA protective clothing, hats, a pedometer, and corn-free energy bars, we went on an easy hike.

It was during these hikes that we really got to know each other. I learned that since her daughter’s death she believed her life was over. In contrast, I believed that with all the traumatic events and never really being an empty nester, my real life hadn’t yet begun.

Hiking gave Ellen a venue to discuss her grief and her daughter’s death, the details and all the regrets. She watched me sob without comment on the top of a hill when I released my fear that my daughter might die. We talked about our families, our husbands, our disappointments. She told me that she didn’t care if she died. Then we discussed the irony of her being friends with me, who spent most of my life fighting to live.

On one of our more strenuous hikes, while quietly focused on moving forward, I thought about Li-Fraumeni syndrome. The defective p53 gene is part of the DNA of every cell of your body from the moment of conception. Wow, I thought, it seemed that my fate—a fate of getting cancer after cancer—was determined from conception. I passed the legacy of attending the University of Virginia to Brad and the legacy of Li-Fraumeni to Kim. It just broke my heart. But then I would see Ellen and imagine her grief and think, Well, Kim is still here.

Continuing in the spirit of adventure, in the spring Ellen and her husband, Jim, joined Doug, Brad and me for a white-water rafting trip down the twenty-one-mile south fork of the American River. The spring melt of the Sierras was particularly good that year, from the heavy precipitation of the winter, the winter of tears.

We spent a wild day roaring down class III and IV rapids with names like Hospital Turn, Satan’s Cesspool, and Troublemaker. Our navigator adeptly instructed us to paddle hard left, paddle back, and stop as we careened down the river getting soaked by the thunderous splashes. When another raft collided with ours as we were making the turn through one of the rapids we had to rescue a young boy who fell off the side of his boat. Fun ceased for a few minutes while the right side of our raft had to “sit hard right” as Jim and I oriented ourselves to the emergency.

I screamed, “What are we waiting for?” and then we yanked the boy up and over the side of our boat.

The day was filled with laughter, hard work, and lots of yee-haws. I realized that, beyond the thrill of experiencing the river, man versus nature, all of me was focused in the present moment. There was no time to ruminate on the past or worry about the future. There was only the now, and I was an active participant, not a spectator. This gave me hope.

Ellen and I laughed, and every picture taken by River Raft Photos that day showed each of us with a smile.

One Saturday, several hikes later, we decided to try hiking the Juniper-Pioneer-Summit trails loop of Mt. Diablo. Somehow we misread a trail sign, and that sent us descending and then ascending a thousand-foot elevation change through Mitchell Canyon.

“If this is listed as a moderate trail, then what could severe mean?” I said to Ellen.

Using all those large muscle groups climbing back up was about as aerobic an activity as you can imagine. Man, was I out of shape. Smoking cigarettes and pot wasn’t helping, either.

While making the ascent for our course correction, I started panting for air on the hot, dry, sunny trail and hearing the whine of some desert-loving bugs in the background, but amplified. The distance we still had to go just to get back on course was daunting. Frequently, Ellen and I had to stop, using the excuse of taking in the scenery, soaking up nature, taking a sip of now-warm water.