A Kick-Ass Fairy: A Memoir (33 page)

She applied for and received a grant from the Lance Armstrong Foundation to cover the cost of the hormone injections—somewhere in the neighborhood of $8,000. That didn’t cover the other medical procedures.

I said nothing about the options and told her when asked, “Trust your gut.” I was heartbroken that she even had to deal with this issue. Let’s not even talk about being a grandmother. I just wanted my daughter to live and have a long, healthy, happy life. I learned that she wasn’t sure if she ever wanted to be a mother. Ultimately, she decided that she didn’t want to delay her treatment; she said if she changed her mind about having children, she’d look at her options then.

In early February, we flew to New York to meet with a top specialist at Sloan-Kettering for a second opinion on treatment protocols. On the morning of the appointment, arm in arm, we walked together around the corner from our hotel to the clinic in the gray, blistering cold, noticing light snow flurries. The inside of the building was beautiful, so Zen, with calming water fountains, soft earth tones, soft lighting, soft light music—or maybe I was just wishfully imagining it being like going to the spa. Yeah right, I thought.

We were escorted to the infusion center waiting room where we could help ourselves to coffee, tea or juice. There were so many people there, especially so many young adults with cancer, couples huddled in whispered embraces. On either side of the waiting room, the brass sign over the double doors heralded “Infusion Pavilion.” The décor attempted to create an atmosphere that said even if you had cancer and your life sucked at this moment, at least you were doing it in style. You certainly felt from the care that went into the planning, execution and effect of the space, that you were special.

I summed it up to Kim. “Well, this is New York.”

When Kim’s name was called, we crossed the threshold of the pavilion onto linoleum tile floors accompanied by typical hospital walls and lighting, and then entered the even-more-clinical clinical exam room. First we met a leiomyosarcoma fellow, a researcher who specialized in this type of cancer. She was about Kim’s age, asked questions quietly, and gave answers in a nurturing way. While she was examining Kim I noticed that under her lab coat she was dressed in a way that demonstrated the low priority of appearances. This sharply contrasted with Kim, who looked like a model in her boots, designer jeans, and cute little sweater jacket.

The door flew open and in walked a militaristic woman who introduced herself loudly as the expert we’d come to see. She shook hands brusquely and immediately ordered Kim to the examination table. After the examination, we reclaimed our seats, and as she was to join us in discussing next steps, she slid her chair farther away from us and thumped down in her seat.

Abruptly she communicated that Kim had a type of cancer that was difficult to treat. “A killer,” I heard.

“This type of cancer likes to come back, usually within the first two years.”

She told us she had looked at the pathology slides and was recommending a different chemotherapy protocol, which they were currently using with some success in more advanced stages of this type of cancer. She would contact Kim’s doctor in San Francisco to discuss her recommendations and would be happy to see Kim again if this cancer came back.

“Any questions?”

Our prolonged silence and, no doubt, the expression on our faces as if we still hadn’t processed the sight of a body falling from the top of a building, gave her an opening to quickly make her departure. Those fifteen minutes we’d spent with her were like a bucket of ice-cold water to the face. No Zen here. Kim still calls her “the Nazi.”

Back home, Doug and I were allowed to accompany Kim to the outpatient surgery to put her drug port in and to her first chemotherapy appointment. The drugs were changed to the newly recommended chemotherapy protocol, and she would receive her treatment every three weeks as an outpatient.

Kim was angry. Her life had gone off the rails, and though we told her this was just temporary, she was understandably miserable anyway. As her treatments continued, she lost her thick chestnut brown hair and had to deal with the extreme side effects from the drugs she was on. She moved back home but continued working at her unpaid internship. She came home later and later, spending weekends with friends. I sat on the edge of my seat, ready, just in case she wanted to talk.

She kept telling us that living with us was not the way she wanted to live; we weren’t her people, her community. It soon became clear that all she seemed to want was to be left alone and talk on the phone to “her people.” After tiptoeing around in the minefield for a few months, one evening Doug raised his head at the dinner table as if from sleep after she made a particularly nasty comment. “When are you going to stop throwing your mother under the bus, Kim?”

After checking my email one night, I did a search for the term sarcoma genetics. That was the entrance to the rabbit hole that is Google. While paging through the results, a few searches from where I started, I saw “Li-Fraumeni syndrome” appearing repeatedly. Ignorantly, I clicked on one of the links, then I clicked on another, then another. Then it “clicked.”

Li-Fraumeni syndrome is an extremely rare autosomal genetic defect. Autosomal means that either the egg or the sperm had the defect; that it is inherited. If you are diagnosed with Li-Fraumeni, you have a defective p53 chromosome in every cell of your body. The reports continued,

It predisposes you to multiple cancers; the most common types include osteosarcoma, soft tissue sarcoma, leukemia, breast cancer, brain cancer and adrenal cortical tumors. There is an increased risk for melanoma, Wilm’s tumor (a type of kidney cancer), and cancers of the stomach, colon, pancreas, esophagus, lung and gonadal germ cells have also been reported.

My heart sank.

I learned that the p53 gene is known as the “guardian” of the DNA of the cell. If there are any errors when the cell divides, p53 suspends the process, initiates repair, and if repair cannot be made, it instructs the cell to self-destruct. If the gene is damaged, as it is in this syndrome, the cell containing errors mutates and multiplies unregulated. If the immune system doesn’t kill the rogue cell …

I emailed my genetic counselor that evening, asking if I had been tested for this defect.

The next day she responded that indeed with the new information of Kim’s diagnosis of sarcoma and given my own history that now I certainly met the criteria for the genetic testing for Li-Fraumeni syndrome. I had learned a long time before that genetic testing was not something that was done willy-nilly: You had to meet criteria. For example, there had to be a reason to test for the BRCA 1 and 2 mutations. Not everyone is tested for all known mutations—that would be expensive and unnecessary, even unethical.

I was tested, and by mid-March, Kim and I met with the genetic counselor and the medical geneticist, where we learned that indeed Li-Fraumeni syndrome was what I had.

“Finally,” they said, “You have the answer as to why you have gotten so many cancers and benign tumors.”

While this was the mother lode for them, all I could think of was this meant that my daughter might have this genetic defect, and if she did, she’d inherited it from me. I didn’t really spend much time thinking about which parent I might have inherited this from. They did mention that I might have a “de novo” mutation, which would mean that the mutation occurred at conception and neither parent had the bad gene. My head was spinning.

Kim had her blood drawn for the test and went off to her internship. I drove home, trying to get my head around the implications of this news. I was horrified to find out the why of my cancers only because my daughter had been diagnosed with a very large stage III tumor. Why hadn’t I been tested sooner? How many tumors did you need before you qualified? At that point I was in the teens of tumors! Had I been tested earlier, simply because I had multiple cancers, maybe Kim would also have been tested and monitored closely. Then she could have been diagnosed with a pea-sized tumor rather than a mango.

This new diagnosis created more grieving not just for my life and my daughter’s young life but also fears for my 19-year-old son’s and my siblings’. I immediately realized that this news could affect every person that I loved. My entire family could be destroyed with cancer. Where else was a family smote? My mind went back to the story of Job.

Thoughts fired through my head like bullets from an automatic weapon as I continued to crawl home in rush hour traffic from the city. I remembered they said that there was a chance that I had a de novo mutation which meant that the defect would have occurred at my conception and therefore for the first time in me. How bizarre, I thought, that my life might have been preordained from the moment of conception. I was getting a headache.

I rationalized that right now all we knew for sure was that I had this mutation of the p53 gene: “A heterozygous change from C to T at nucleotide 13346 resulting in a ‘nonsense mutation’ at codon 196 in exon 6 of my DNA.” The conclusion said that this mutation was “deleterious to the subject’s health.” I would have to look up the word deleterious when I got home.

Over the next few weeks, I felt overwhelmed, buckling under the weight of it all, too tired to do more than scuff across the floor, walking into walls, really.

“Mom, you need to take care of yourself,” Kim was constantly saying.

“Mom, you never stop.”

“Mom, you never modeled balance. This is why I am always so stressed.”

“Mom, I need you.”

“Mom, it’s none of your business.”

“Mom, we can’t have you getting sick now.”

I wanted to curl up in a ball in a cave … and then what? The cave was as far as I could get. This was my life right now, take it or leave it.

As Kim’s treatments continued, she bounced back more slowly and was easily tired. She maintained her commitments in the city and commuted there most days, returning late at night, exhausted. She arranged to spend time with her friends at her treatments, making tiaras, playing cards, being the Little Miss Sunshine of the chemo ward, as only Kim could be. The next day she typically recovered at home, usually on her cell phone. She came out of her room for dinner, when she was there, her dinner needing to be reheated.

She had to become a warrior, and on some level, I was now her enemy. One night she asked me if I thought her cancer had come back. She was lying on the floor, hairless and ashen-faced, and felt that her belly was distended and hard.

“Can’t you feel the mass? Do you think it has grown back?”

I felt around to the best of my ability, and told her that what I thought she was feeling was the scar tissue from the surgery. She had just had the first of many follow-up CT scans. I told her these feelings of fear were normal. I told her my post-scan theory of walking the plank of a ship, waiting to see if you are executed or spared. She closed her eyes, turning to stone.

“Could you leave now? I just want to be alone.”

I said OK and walked out of her room.

All I wanted to do was hold her, cradle her in my arms, and comfort her. But she just kept pushing me away. I wanted to feel like a mother and not just an experienced cancer patient, a warrior, a problem solver. I was at a loss as to what to do. Finally after fifteen minutes of wringing my hands, I knocked on her door and opened it. She was curled up on the bed, not on the phone for once.

“What?”

“Can I just hold you?”

“Yes.”

I crawled into her bed with her teddy bears and Elmo. I wriggled myself in next to her, put my arms around her, and gently pulled her to my chest. She began sobbing from the depth of her being, and soon after, so did I. I felt the hardness of our armor begin to soften and then melt away with our tears.

For the first time in more than a quarter of a year we cried until there were no more tears, not saying a word. None were needed.

I realized that I was now Demeter, mourning for my daughter, and that my daughter for that brief moment had returned from Hades. All those years I had been Persephone, cycling through the underworld on a regular basis through the process of death and rebirth. But even though I had my own experience of the events that had just unfolded, this experience was hers and needed to be hers alone. She was now Persephone. I was there to help, not live her experience. Kim needed a mother who could be what she needed. I had to stop being the mother that perpetually needed, like my mother.

Maybe getting cancer for Kim allowed her to get out the axe. All the things that had been bothering me about her behavior toward me, the feelings of not being heard, not being seen, not being valued, were exactly the same for her. I needed to see her still needing me. There was now no doubt that our relationship to each other was changing. It was going to have to.

Kim’s test results were positive for Li-Fraumeni syndrome, as we suspected. She seemed too overwhelmed with the immediacy of her situation to share her feelings about this.

I was so sad. But then I thought, Would I have not had her if I had known? I couldn’t imagine a life without her ever being born. I thought about all the parents who have children born with inherited genetic defects. How many defects are not yet identified? Is this natural selection at its finest? It didn’t seem to get any worse than having the p53 mutation. Although it was really a mutated tumor-suppressor gene, could it really be the cancer gene?

If I thought about what Kim’s life might be like, that she now had something like a 100 percent chance of getting breast cancer, that her life might be like mine, I just wanted to die. But then I thought, I lived—sometimes it has even been great. Maybe things won’t be too bad. I went on like this for weeks.

Kim walked in the procession for the conferring of her master’s degree wearing red boots under her black gown and a shocking pink wig with silk butterflies attached flying around her head. Even with her low blood count from the chemo the day before, she looked vibrant, youthful, and so full of life, on the precipice of the beginning of her career. Doug and I didn’t know most of her friends in attendance, each so different, representing the diversity of the city of San Francisco. Kim planned to celebrate this accomplishment with her new family, in her own style. Doug and I congratulated her and drove home.