Smoke, No Fire
by Shena Crane
I am here to keep my bones from melting.
This is my first time in an infusion suite, a tired beige hospital room with four hulking recliners, where patients usually receive chemotherapy. But I’m not here for chemo. Just a bone strengthener. I don’t have active cancer—the cancerous cells residing in my bones are officially classified as “smoldering.” Medically, this means my wayward cells are asymptomatic, they have yet to attack my body. But as someone who traffics in words—I’m a legal translator—I prefer the lyrical precision of the dictionary’s definition of “smoldering”: burning slowly with smoke but no flame. I need an infusion to protect my bones from the smoke. I need it for the rest of my life.
In the recliner across from mine a patient snores, as if his cocktail of IV drugs, one neon orange and the other mushy yellow like a fruit sorbet, has already exhausted him. He looks like an apparition rather than a person—translucent gray skin, wispy gray hair, body almost flat under a grayed thermal blanket.
I shiver and look away. I don’t ever want that to be me.
Shaken, I concentrate on arranging my backpack and purse. For at least the tenth time since I left the house this morning, I wish David, my husband, would’ve come with me. When I asked him two weeks ago, he checked his calendar and shook his head. “Big client presentation. Can’t change it,” he said with a hug as if to soften his reply. His response saddened but didn’t surprise me. David still hasn’t met my current doctor, a fact I won’t admit to even my closest friends. Clinically, David’s all too aware of what’s going on—he has a PhD in pharmacology and is president of a pharmaceutical education company in Manhattan where we live—but emotionally, he’s clinging to denial.
I’m squirming in my recliner, its cracked vinyl is scratchy, when I hear casters clicking across the floor toward me. I look up to see a blond woman dressed in scrubs approaching, one arm clutching a chart and some sort of infusion paraphernalia, the other pushing an IV pole with a computer gadget like my roommate’s. A bag hangs from the pole, plump with clear fluid. “My name’s Krista,” the woman says, “I’m your infusion nurse today.” She inspects the labels on the IV bag and the paper bracelet on my wrist. “Have to make sure these match. You’re Annie Gold, right?”
“That’s me,” I say, and then add in a blurt, “I don’t have active cancer. I don’t need chemo, just this bone stuff.”
Krista’s eyebrows shoot up. “Great,” she says without smiling.
I immediately feel foolish—these explanatory blurts have become as spontaneous as a Tourette’s tic. But I want her to know, I want everybody to know, I don’t need chemo. I’m not like the other patients who come here.
Krista dons latex gloves to poke at my veins, explaining my infusion will take four hours, and the computer gadget on my IV pole is a meter to control the speed of the drip into my bloodstream. Going in too fast can cause side effects, she says, handing me a sheet of paper. “Be sure to read this.” I glance at it and see muscle aches and fever near the top and convulsions and death at the bottom. My armpits dampen.
Tapping a promising vein, Krista asks if my doctor told me I must drink at least two quarts of water daily for three days, starting today, to flush the infusion from my kidneys. I nod. I brought bottles of water in my backpack.
She punctures my vein—I feel nothing, either she’s very deft or my nervousness has numbed me—attaches the IV tubing and tapes it to my arm with a Saran Wrap-like bandage. If I need to use the bathroom, she explains as she demonstrates, I can unplug my meter, which will switch to its battery. Then, calculating numbers aloud, she pushes its buttons. Fat drops of fluid start to slither down, and it begins to flash and beep in asynchronous accompaniment to that of my roommate’s, whose meter seems more alive than he is.
“Can I get you anything? Pillow? Cookies?” Krista asks, incongruously sounding like an airline hostess. I say yes to the pillow, which she produces from a cabinet, and no to the cookies. I’ve got a sandwich and fruit in my backpack. She checks my IV line, says, “I’ll be back later to see how you’re doing,” and walks out.
Across from me, my roommate stirs, then seems to lie even flatter than before, as if he’s becoming two dimensional. Trying not to stare, I tilt back my recliner and take out the documents I’m translating from Spanish and French into English. But my work demands meticulous attention and I find it difficult to focus. I pull out the novel I brought—I’m a voracious reader and can read in almost any situation—but the harsh fluorescent lights blur my eyes. Leaving my book in my lap, I open my first bottle of water and start gulping.
A few minutes later the bottle’s empty and I’m jumpy again. Maybe I should call David, maybe his meeting is over. It’d be good to hear his voice, even his maddening assurances everything is all right. Signs are posted everywhere prohibiting cellphone calls, but I decide to sneak one from the bathroom. In two minutes, I’m perched on the toilet lid, stealthily punching in David’s number only to get his voicemail. “Uh, hi, it’s me,” I say. “I’m doing okay, I guess. It’s weird and scary here.” I hear my voice go up and consciously firm it. “But don’t call me, they’ll kill me if my phone rings. I’ll try you later. Love you,” I say, signing off with the words we’ve used since shortly after we met 15 years ago, even when it’s just one of us making a quick trip to the market.
I emerge from the bathroom as three people enter the suite, an older woman with rounded shoulders and a furrowed face, and a young couple looking equally grave and dressed in clashing plaid shirts. They gather around my elderly roommate, put on smiles, and wake him with loving questions: “Honey, do you need to use the bathroom?” “Dad, we brought chicken noodle. Want some?” Groggy, he says no thanks and closes his eyes. His family falls silent, smiles fading, and arrange themselves in molded plastic visitor chairs. I look back to my book, but the younger woman’s eyes find mine before I can anchor them to the page. “Hi,” she says, her smile returning.
My smile’s a twitch. I don’t want to talk, but everyone is turning toward me, their chairs squeaking as they shift them to face me.
The young woman picks up a bag of jellybeans from my roommate’s tabletop. “Would you like some? Sugar helps with the nausea.”
The fear I carry around these days shoots through my body, all but smothering me. “No thanks,” I say, then point to my IV bag. “This doesn’t cause nausea. It’s just a bone strengthener. I don’t have active cancer.”
“Oh, that’s good,” she says. But I can tell she and her family don’t believe me. Their smiles are strained, overly bright with tight lips. I can practically hear their thoughts: It’s okay, you’re in denial. We know. You don’t have to say it.
I want to scream, No, really. My cancerous cells are just smoldering. Smoke, no fire. But they’re sitting in visitor chairs, free to leave, and I’m propped up in a recliner, with a pillow behind me, and an IV dripping into my arm, in the outpatient oncology ward of a prominent New York City hospital affiliated with a renowned university. The explanation of how I got here would take too much time. And I’m not looking to make friends. I’m not looking to join this club. I turn back to my book, shutting them out.
* * *
Eighteen months ago in July of 2002, right after my 51st birthday, I visited a rheumatologist for the chronic pain in my neck and shoulders. The doctor thought it was just too much time at the computer—translators live at their computers—but ordered some “let’s be sure” tests.
Three days later he called at 9:30 at night.
The tests, he told me, showed no rheumatic disorders, my pain was from the computer. But they revealed darker news: I had an abnormal protein in my blood and urine, an alarming protein that was an indicator of a rare and incurable blood cancer called multiple myeloma. Wishing me luck, he referred me to a hematologist-oncologist (a hem-onc), a doctor who treated blood cancers.
I woke up David after I got off the phone (he went to bed at nine, an early bird to my night owl). “What’s wrong?” he said in a whisper. I told him I might have an incurable cancer. “That can’t be right,” he said. “This guy’s just a rheumatologist, he doesn’t know. Come here.” I slipped into bed, he wrapped his arms around me, and I took my first deep breath since I’d gotten off the phone.
My comfort proved to be momentary.
I was a research junkie, a requirement for being a good translator, and always turned to information as my cure-all. The next morning I went online and discovered the International Myeloma Foundation and the Multiple Myeloma Research Foundation websites. Rather than being a panacea, the data knotted my stomach. Not only was myeloma incurable, it was painful and debilitating: Bones broke down and collapsed, kidneys malfunctioned, infections developed. Life spans were terrible—typically three to five years. Three to five sick years. The knot in my stomach became a burn.
A week later, David accompanied me to my first appointment with the hem-onc, a man with a rather taciturn manner. He ordered more tests, including a “skeletal survey”—an x-ray of every bone in my body, and performed a painful bone marrow biopsy.
We had to wait almost a week for all the results and, three days in, the stress hit me. David came home to find me huddled on the couch, sobbing. Alarmed, he asked if I’d heard from the doctor, and I choked out that no, I hadn’t, I was just scared. “Do we have a situation here?” he asked, incredulous. “This is just the information gathering stage. We don’t know anything yet.”
I was equally incredulous. “Yes, we have a situation. Stop being such a goddamn scientist,” I said. “I need you to be my husband, not a medical investigator.” We stared at each other in identical horror and didn’t speak the rest of the night.
Finally, on Friday the hem-onc called to say I had Monoclonal Gammopathy of Undetermined Significance, or MGUS. Myeloma cells were present in my bones, but not in a sufficient quantity to cause damage. There was a 30 percent chance MGUS could become full blown myeloma, so I’d be tested every three months. Forever.
I was devastated. “But the odds are in your favor,” David said. I nodded and quietly resumed my online information gathering, hoping to find an alternative course of action: I didn’t want to live with perpetual uncertainty, waiting to find out if I was on my way to a horrible death or just living a life punctuated with inconvenient and unsettling medical tests.
* * *
In the infusion suite, I open another bottle of water and glance at my roommate who’s still sleeping, his snores deeper, his visitors settled in their chairs. The older woman smooths his hair and quietly chats with the couple, the three of them falling into what must be a routine. I’m grateful I’m not sick like he is, but I move my backpack to one of my visitor chairs so my share of the suite doesn’t look so empty.
A few minutes later my roommate’s snores suddenly stop and he sits up, his color now green. He frantically reaches for the plastic basin his wife has grabbed from his tabletop. “Quick,” he says, and for both our sakes, I pray to gods I don’t believe in that he doesn’t vomit. He swallows hard several times—I can see his Adam’s apple bobbing—and then, mercifully lies back. I let out the breath I didn’t know I was holding.
My fingers itch for my cellphone, but it hasn’t been an hour since I called David. Instead, I exhale, and try to pretend I’m anywhere but in this room. Eyes closed, I silently recite my now almost constant litany: David and I have a great relationship. We adore and support each other. But my invocation doesn’t work. The fissures that have yet to appear in my bones are showing up in our relationship.
* * *
A year after my MGUS diagnosis, in 2003, my test values began to rise. Upping my research, scared and unhappy with my hem-onc, he still didn’t like being questioned, I decided to change doctors. My new hem-onc was kind, compassionate, and communicative. He was also more thorough, ordering a new batch of tests, and performing another bone marrow biopsy. The results showed I’d progressed to smoldering multiple myeloma: the number of myeloma cells in my bones had almost tripled. I still didn’t need chemotherapy, but I now needed to be tested every month. I also needed a drug to protect my bones—a strong drug dripped in slowly through an IV line so it wouldn’t burn away my digestive tract or kidneys. What were the chances I’d progress beyond smoldering myeloma, I asked my new doctor. “Seventy percent,” he said. I wished I’d never asked.
Meanwhile, my endless research drove David crazy. He was at his best in an immediate crisis. The one time an ambulance had taken me and my asthma to the emergency room, he was perfect—asking questions, pointing out my IV medication dosage was incorrectly marked, always a step ahead. When I broke my wrist playing tennis and lay comatose with morphine in our bed, he stayed awake all night with my cast propped up in his arms to keep the swelling down.
But faced with a problem, he wanted to do what could be done, do it, and forget the problem the rest of the time. I found this impossible, and David, in turn, found me impossible. He reacted the same way when his father had a heart attack, and when his mother was diagnosed with Parkinson’s. It was how he treated himself. This was the man, who, waiting for the doctor to call to tell him if his prostate biopsy was benign or malignant (it was benign), said, “I’m going running. I’m not waiting around to find out if I have cancer.”
His attitude made me insane.
* * *
It’s the second hour of my infusion and the sound of footsteps announces the arrival of a middle-aged couple. They’re holding hands, and somehow, as the woman takes a seat in the third recliner and the man sits in a visitor chair, their hands remain clasped. I wish David and I were holding hands, we always do. The woman has bright red sores on her neck and arms that glisten as if they’re weeping. I quickly look back to my book, not acknowledging the newcomers. But they have friendly smiles, and after Krista sets up the woman’s IV treatment, my roommate’s family rotates their chairs toward them. Stories are traded—the woman’s breast cancer, my roommate’s colon cancer, her hair loss, his holistic remedies. I stay quiet, turning the pages of my book in a parody of reading. My silence feels noisy, but I refuse to join in.
My speechlessness protects me, but it’s also isolating and lonely. I don’t know about the other infusion suites (there are many), but in this one I am the only patient without someone here for them. I try to tell myself it’s okay, I’m handling this, but end up damming David for not coming.
I slip my cellphone into my pocket and stand to detach my meter. Everyone turns to look at me and I feel my face heat up. I wiggle a water bottle at my audience and say, “Bathroom break!” I almost topple my IV pole in my haste to get away from the upturned faces smiling at me.
Once again, David’s voicemail answers when I call. This time my message is not so sanguine. “Me again. Really lonely here. Wish I had company. Love you.”
The time drags on. My IV drips. I eat my lunch. My gray, flat roommate sinks deeper into his recliner. The room’s conversation meanders away from cancer, but I remain mute, pretend reading, periodically pushing my IV pole into the bathroom to keep pace with the bottles of water I’m drinking.
During the third hour of my infusion, a fourth patient arrives with his wife and takes the last recliner. The man is skinny and pale but he’s smiling and saying hi before he even sits down. Once again, Krista comes in and sets up his treatment, and then everyone but me and my sleeping roommate turns their attention to him and his wife. The exchange of initially bashful revelations of diagnoses and treatments starts up again. The chatter gets more animated as the group finds its way past cancer. I burrow further into my recliner, but can’t help looking over at the talkative huddle. The breast cancer woman catches my glance and calls out to me, “Hey! Why don’t you join us? We’ve got a full house now.”
Appalled, I give her a small smile and point to my book. “You enjoy yourselves,” I say, “I’m fine.”
I hear a few whispers, I can only imagine what they’re saying, and then the conversation resumes. Once again I damn David for my being alone and tears creep up behind my eyes. I do not belong to this club. I don’t want to be here. I never want to come here again. I especially never want to come here alone, with no companion or cheerleader. I don’t care if David hates every minute. I want him here.
Hastily, I unplug my meter, grab my phone and stride toward the bathroom, propelling my IV pole with abrupt shoves. I hit David’s number, get his voicemail, swear, and try two more times. He picks up on my last attempt.
“Hi,” he says. “My meeting ended a minute ago. I was just going to—”
I cut him off. “This is bullshit.”
“What?” he says.
“This is bullshit that you’re not here. It’s not right.”
“Are you okay?” he asks.
“No. I’m pissed,” I say. “Really pissed. You should be here. Everyone but me has someone here.”
“Everyone else is probably having chemotherapy. You’re not. It’s just a bone—”
“Stop saying that,” I say, my voice taut. “That’s not the point.”
“Did something go wrong? Are you sick from the medication?” he says, voice deep with concern, but I can only focus on the misdirection of his questions.
“I am sick,” I say. “I’m sick of you not being here for me. I’m sick of doing all of this alone.”
“You don’t do everything alone,” he says. “I took you to your bone marrow biopsies, and—”
“You took me to the first biopsy,” I say. “I took the subway home from the second one.”
“Because you didn’t know you were having a biopsy that day. And the subway was your idea, I said you should’ve taken a taxi.”
“The issue isn’t that you’ve come with me to a few appointments,” I say. “The issue is that 95 percent of the time you don’t. And today, today is—” I start to cry. “Today is very hard. There’s a woman in my room with terrible sores on her neck and arms, and another guy so gray he looks dead.”
“I’m sorry,” he says.
“Don’t be sorry about that stuff. Be sorry you’re not here with me. Be sorry you hide behind your job, behind your goddamn sacred meetings.” I hear the sarcastic chant of my words but I don’t care. “Be sorry for what you don’t give me, David. That’s what you can be sorry for.”
The phone is silent and I wonder if he’s hung up. We seldom fight—I don’t think we’ve had five real fights in all our time together.
Finally his voice comes through. “I don’t know what to say to you. Maybe I’m a coward, maybe I’m just not brave like you.”
“I’m not brave,” I say. “I have no choice. I have to do these things.”
“You are brave. Yeah, I think you obsess too much, but you face it head on. I don’t, or I try not to. You think I forget what the odds are of this thing progressing? I know, but I try to never go there.”
“Literally,” I say. “You literally never go.”
“I know,” he says, his voice soft. “But I can’t. I’m afraid I’ll get stuck, get paralyzed if I think it all the way through. I can’t imagine being without you.”
“So don’t imagine that,” I say. “Imagine us being in this together. You don’t have to come to every doctor appointment, every infusion. But I’d like you to be there some of the time. You haven’t even met my new doctor. Would meeting him make it too real?”
A pause. Then he says, “I could do that.”
I’m about to tell him it’s the least he can do when there’s a knock on the bathroom door and a voice says, “My husband needs to use the restroom.”
“I gotta go,” I say to David, “I’m calling from the bathroom and somebody needs it.”
“We’ll talk tonight,” he says, and I try not to hear the relief in his voice. “Love you.”
“Yeah,” I say with a sigh, “love you too.”
The fourth hour of my infusion is almost up when my meter stops its endless beeping and honks loudly, unrelentingly. Krista materializes, pushes a button to stop the honking, and tells me I’m done. She removes my IV needle, exchanges it for a Band-Aid, and takes my blood pressure and pulse. Then she reminds me to keep drinking water and leaves.
I use the bathroom one last time, pack up my belongings, and walk toward the door. Everybody looks up. “Goodbye,” they say in seeming unison. “Take care. Be well.” Their voices wake my sleeping roommate, who astoundingly opens his eyes and weakly waves. I’m shocked by all the attention. I hesitate, and then make a decision—I walk out. Saying nothing. Looking nowhere.
A line of waiting taxis sits in front of the hospital. I slip into one, murmur my address and sit back. Embarrassed. Sad. I’ve breached every tenet of hospital-room etiquette—politeness and manners, patient bonding, respecting the sick, being decent. But there wasn’t a choice. I couldn’t engage, I couldn’t join in. My defiance is all I have.
But perhaps I’m fooling myself. Perhaps my insistence on the supposed poetry of my condition, smoke but no flame, is absurd. Smoldering myeloma still means cancerous cells. However I want to phrase or parse it, I belong in that infusion suite, I’m a member of that club. Maybe my defiance is just another version of David’s denial. Maybe we’re not so different.
I still need to ask David for more. He still needs to give me more. But today the contours of our relationship have been altered and for now that’s enough.
Shena Crane’s fiction has appeared in Epiphany and her nonfiction in the Wall Street Journal, National Business Employment Weekly, Glamour, and elsewhere. Her book, What Do I Do Now? Making Sense of Today’s Changing Workplace, was translated into Braille by the National Federation of the Blind and featured on The Today Show.