A lesbian author discovers she has a rare form of cancer and, during treatment, considers getting a pet.
One morning seven years ago I woke up smiling. “I dreamed we had a little black cat named Fumiko,” I told my partner.
“Well, why don’t we have a little black cat named Fumiko?” came the reply.
The dream offered a note of sweetness during a difficult season: I’d spent years laid up with mysterious injuries no doctor could explain, and the latest ones—stress fractures in both feet that refused to heal—had proven especially debilitating. I was spending the winter in two surgical boots.
It was around this time, the beginning of 2009, that I was diagnosed with a rare autoimmune condition called reactive arthritis. Formerly known as Reiter’s syndrome, this disorder can cause crippling inflammation in the joints, blinding inflammation in the eyes, and burning inflammation in the urinary tract. The medical school mnemonic for this type of arthritis, which afflicts no more than 200,000 Americans a year, or .06 percent of the population, is “Can’t see, can’t pee, can’t climb a tree.”
A combination of two immunosuppressants healed my feet within eight months: methotrexate, which in higher doses is a chemo drug, and Humira, one of the most profitable drugs in the history of medicine, which is what’s called a tumor necrosis factor (TNF) blocker. By August 2009, after years stuck indoors, I could take a walk for pleasure. I could stand at a party again, and even dance. I threw away my surgical boots. To keep the arthritis at bay, I had to give myself six shots a month and keep the TNF blocker refrigerated: a small price to pay for the ability to walk.
Unbeknownst to me, in 2009 the FDA released a warning that there had been an increase in a rare cancer called leiomyosarcoma among juvenile and adolescent patients taking TNF blockers like mine. A cancer of the smooth muscle tissues, leiomyosarcoma affects approximately 2,000 Americans a year, just .0006 percent of the population. The onset of cancer, the FDA warning explained, typically occurred within 30 months of beginning use of the medication.
In January 2012, six months after my mother’s death and 35 months after I started taking TNF blockers, I began bleeding more heavily every month and finding drops of pee in my underwear: Both symptoms indicated the presence of a very large uterine fibroid. In April I had surgery for a fibroid the size of a small watermelon, a mass so big the doctor decided to “morcellate” it, removing it in pieces rather than all at once.
One in a thousand fibroid surgeries reveals the fibroid to be, as mine was, malignant. Two pathology reports and three oncological consultations later, it was official: I was diagnosed with uterine leiomyosarcoma. During the hysterectomy that followed the cancer diagnosis, the surgeon discovered that a tumor-crumb left over from the morcellation procedure had implanted itself outside my uterus, on the outer wall of my colon. According to a nomogram drafted by the leading specialists in leiomyosarcoma, taking into consideration my age, the size of the tumor, how quickly its cells divided, and the implanted tumor-crumb, I had a 26 percent chance of being alive in five years. I brought up the 26 percent figure when I met my oncologist, whom I’ll call Dr. Martha Hindsley, one of the authors of the leiomyosarcomanomogram. “If I do radiation or chemo, will this number be higher?”
“No,” she said. “There’s no data to say that radiation or chemotherapy can increase survival rate or prevent recurrence.”
Nonetheless, Dr. Hindsley offered a menu that included both radiation, which she recommended right away, and chemotherapy, which she encouraged me to save for later.
“If neither of these therapies have been proven to increase life expectancy or prevent recurrence, why do them?” I asked.
“Based on my experience, it’s better to do something than nothing.”
“But I am doing something,” I argued. “I’m doing five things. I’m not taking Humira or methotrexate anymore. I’m not producing estrogen the way I did when I had my ovaries. I’m eating a squeaky-clean diet. And maybe this sounds far-fetched, but I’m not mourning my mother anymore. The tumor seems to have started growing not long after she died last year.”
Dr. Hindsley smiled thinly. As far as she was concerned, none of those things constituted something. “Why don’t you make an appointment with the radiation oncologist?”
I had read her work on leiomyosarcoma. I stood my ground. “But I thought you said in an article that in cases like mine, observation was the standard of care.”
“I said that observation was the standard of care for people with tumor contained completely inside the uterus whose tumors are removed intact,” Dr. Hindsley said, correcting me. I had never heard anyone use the word tumor without an a or the before. “You had a morcellation procedure and then an implant outside the uterus. I’d say your tumor has already declared itself. I’m recommending you make an appointment with a radiation oncologist because you’re probably 100 percent likely to have a big recurrence in your pelvis.”
I made the appointment. I spoke to people who had experienced pelvic radiation. I also got a second opinion.
“I wouldn’t say you’re 100 percent likely to have a recurrence in your pelvis,” said the second oncologist. “There’s a not-negligible chance you’ll have a recurrence.” She recommended chemo instead of radiation, explaining that although the side effects of chemo are brutal, the body clears out the drugs eventually, but irradiated tissue never goes back to its original state.
While neither oncologist recommended observation, the second one granted that “Not only is observation your right as a patient, it’s also a medically appropriate choice, given that, as you know,” she said, echoing Dr. Hindsley, “none of the options have been proven to increase life expectancy or prevent recurrence or metastasis.”
Recurrence is local; metastasis is distant: Both are words describing the cancer coming back. But if the disease recurs in my pelvis, there’s still a chance of a surgical cure, albeit one possibly involving a colostomy bag. If it metastasizes someplace else, like my lungs or brain or bones, then, as Dr. Hindsley said mildly, “You will probably die of your disease.”
2
Walking around my neighborhood that June, I felt my future slam shut, as implacable as a shopkeeper’s gate. I could not face the novel I’d been writing. I told the university where I taught that I wouldn’t be available to work in the fall. My partner and I had been slated to spend the following spring teaching in Paris, but I might have to be in treatment then: We cancelled our plans.
Amid the grim, clotted hours of appointments, phone calls, and online medical research, it occurred to us that, for the first time in years, with no travel plans on the horizon, we could toy with the idea of getting a pet. My partner began to wonder aloud, “Should we just get a cat now? I mean, what’s stopping us?”
“There are dozens of cute black shelter cats on Petfinders.com,” I said helpfully.
“So this is what you’re into behind my back! Pet porn!”
Two weeks of fostering later, it was official: We signed the adoption papers, and a little black cat named Fumiko entered our lives.
As Fumiko began to explore my apartment, I thought about radiation. I did not want to alienate my oncologist, one of the world experts on leiomyosarcoma. But I read and reread the handful of dense articles that have been published on LMS and memorized the bleak statistics. According to the only randomized study on patients with this cancer, getting radiation would decrease the chances of recurrence in my pelvis by only 4 percent, while it might even increase the chance of a metastasis to the lungs. That just didn’t sound good enough, given what I’d be getting for my 4 percent. Extreme fatigue. A permanently changed digestive tract. Damage to the irradiated organs. It’s true, most people who get radiation don’t wind up with a colostomy bag, but then again, most people who take my arthritis drugs don’t get cancer.
And meanwhile, I just kept wondering. Beyond the FDA warning, I couldn’t find any data, not even anecdotal data, on what happened to patients who got this cancer after taking tumor necrosis factor blockers. But not only had I been suppressing my immune system, I had also been taking a drug that specifically blocked my body’s ability to kill tumors. When my arthritic body thought my feet were tumors, that was a good thing, but then when I had an actual tumor to contend with, no one showed up to work. I had still been on the arthritis drugs when the morcellated tumor-crumb sank its roots into my colon wall. If I simply went off the drugs, could my immune system lick this cancer on its own? My tumor had already declared itself, in Dr. Hindsley’s words. But my drug-free immune system hadn’t yet declared itself. From what I understood about cancer—and after all the research I had done, I now understood a fair amount about cancer—we are all constantly generating and killing cancer cells. I doubted my body could kill large visible chunks of tumor on its own, but on a microscopic level? I’d never know if I didn’t try.
I knew I could die from the consequences of my experiment. But I could suffer the side effects of radiation or chemo and die anyway.
Three anxious, research-filled weeks after Dr. Hindsley recommended radiation, I called her. “I have so much respect for you, and I’m so grateful that you’re my oncologist. But I’ve thought about this long and hard, and I’d like to defer treatment until we get the results of the next scan.”
“That’s wonderful that you’ve come to a decision you feel comfortable with,” she said crisply. “Let’s hope you have good news in October.”
I think I’d been expecting her to argue, to tell me I was making a mistake, to wag a witchy finger, howling, “Mark my words!” But she didn’t. The phone call took less than two minutes. That night, so relieved to have the conversation over, I slept like a baby.
And then the fear began.
3
Not long after I told Dr. Hindsley I wanted to defer treatment, I began to imagine what would happen if my next CT scan weren’t clear. The scan would be on a Monday. Dr. Hindsley had told me that the next day, Tuesday, she would call with the results, good or bad. The phone would ring, I began to imagine, and she would tell me the bad news. There’s something that looks like it could be tumor here in your pelvis, or in your abdomen, or it’s spread to your lungs.
Can we do surgery? I would ask Dr. Hindsley. If the tumor reappeared in the same spot as before, I’d tell her, Let’s sign me up for radiation as soon after surgery as possible.
Or Dr. Hindsley would say there’d been a metastasis, and I’d ask for chemo. This was what I imagined again and again: Dr. Hindsley calls to say there’s a tumor on the scan, and I tell her, You were right and I was wrong. Going off the arthritis drugs wasn’t enough. We tried my way, and it didn’t work. Now let’s fight this your way.
At first this imagined phone call, what I began to call the fear video, didn’t feel like what it was: an obsessive, fearful fantasy. It felt like a plan I was making, a problem I had to solve: What will you say if the doctor tells you there’s a tumor on the scan? I didn’t notice that it always ended the same way, and that it always made me feel worse.
4
“I guess you’ll be living from scan to scan,” my sister Amanda said, after reading up on leiomyosarcoma.
“Yes and no,” I said. “If I’m right and the medication caused the cancer, then if the first scan after I stop the drugs is clear, the next one will probably be clear, too. And if I have two years with clear scans, I’m probably out of the woods. What we don’tknow is this: Will the first scan be clear? Was stopping the drugs enough?”
“Yeah,” my sister said quietly. We hadn’t spoken regularly in years, but since the cancer diagnosis, she’d been calling every week. Fumiko the cat, shy at first, had become affectionate, and was curled in the curve of my hip as I spoke on the phone. “Are you scared?” Amanda asked.
“All the time,” I said.
Suddenly, I could hear Amanda’s dogs start to howl through the receiver, so loudly that the cat looked up at the telephone, alarmed, and flattened her ears. “Someone’s setting off fireworks,” my sister explained.
Fumiko gazed up at me with wide green eyes and settled as I stroked her satiny fur. I described her to my sister. “I love it that she follows us around. It’s like she’s our electron and all the places we might find her are her little probability clouds.”
“A Fumiko halo,” my sister said.
“Sometimes I love her so much I just want to squeeze her.”
“I feel the same way about my littlest dog,” my sister said. “I just hold her sometimes and tell her, ‘You are my ray of sunshine.’”
“Why was our mother so down on pets?” I wondered aloud.
“Her loss, man,” my sister said.
I could picture our mother now, face wreathed in cigarette smoke, half-melted chips of ice in a tall glass by her side. “Having a pet is like having a two-year-old,” she was declaiming as she hauled herself up to refill her glass. I could hear the smooth pour of bourbon. The pop of ice. For a moment, I was Fumiko, and my ears were flattening against my head. “A two-year-old who never grows up,” my mother was concluding as she collapsed back into the couch. She was lighting another cigarette, eyes fluttering closed on the deep inhale. She already had all the halo she needed, I realized.
“I’m scared too,” my sister said.
5
Cancer meta-researcher David Servan-Schreiber was a neuroscientist who, after accidentally discovering he had a brain tumor, made it his life’s work to gather together all the medical research available on things patients can do to fight their cancers. In so doing, he managed to keep his own cancer at bay for 20 years longer than anyone expected.
When I read Servan-Schreiber’s book, Anticancer, I oddly found it easiest to adopt his more punishing recommendations. Making myself walk two miles a day and switching to a sugar-free, flour-free, dairy-free diet wasn’t fun, but it came to me more easily than joining a support group or meditating. But because I pushed myself to do everything Servan-Schreiber recommended, I began attending the free daily meditation sessions offered at a yoga center up the street.
When your mind wanders, books on meditation counsel, try naming what your brain is doing and gently shepherding your attention back to the present. The idea is to get your observing mind to describe your attention, to just sit there and name your mental activity. “Feeling hot. Feeling uncomfortable. Nose itching. Butt itching. Bored. Making a grocery list. Nursing a grudge. Planning. Planning. Remembering. Remembering. Fantasizing about the past. Fantasizing about the future.” And so forth. While following these instructions, I discovered that I went back to the fear video, that imagined phone conversation with Dr. Hindsley, more often than I’d even realized.
6
Naming the fear video and observing when I played it in my mind felt like accomplishments all by themselves. Soon I realized I was playing the fear video in the shower every single morning. Naked, I found it all too easy to remember I had cancer: I saw my belly, flattening under a sugarless anticancer diet. I saw my long pink surgical scar: a tumor the size of a small watermelon, I remembered the surgeon saying. Cancer, tumor—it was an effortless glide into the fear video. Day after day, I’d get into the shower groggy and come out terrified.
Don’t be afraid, I told myself, trying to press the STOP button when the video began to play. It didn’t work. Nor did reminding myself that going off the arthritis drugs might be enough to keep the cancer at bay.
I couldn’t stop the fear video, but could I pause it? I began singing a long song that required my full attention just before I got into the shower: Tom Lehrer’s version of the periodic table of the elements set to the tune of “I Am the Very Model of a Modern Major-General.”I may have simply been indulging in cheery denial, but the choice to sing felt cannier than that, more like a conscious refusal to slide into the pit of dread: There’s antimony, arsenic, aluminum, seLEENium, hydrogen and oxygen, nitrogen and RHEENium…
One day not long after I began singing in the shower, when I stepped out of the tub, I looked up. There, on top of a door barely two inches thick, stood Fumiko, a black cat silently balancing on a thin strip of wood, eight feet above the ground. “What are you doing up there?” I asked. I sat down on the bed in my towel, and she took a swooping leap toward me. I was so delighted by her daring that for a moment I forgot I had cancer.
Want to know how it ends? Read the compete essay at: http://www.amazon.com/Fear-Kindle-Single-Family-Tooth-ebook/dp/B014JRV6XO
ABOUT THE AUTHOR
The only writer ever to have received the American Library Association Stonewall Award for Fiction twice, Ellis Avery is the author of two novels, a memoir, and a book of poetry. Her novels, THE LAST NUDE (Riverhead 2012) and THE TEAHOUSE FIRE (Riverhead 2006) have also received Lambda, Ohioana, and Golden Crown awards, and her work has been translated into six languages. Avery edits an urban observations column for Public Books, works one-on-one with writers as a manuscript consultant, and teaches fiction writing at Columbia University. www.ellisavery.com