xii
“Sarah?” Steph’s voice sounded hollow on the phone. I’d come home at three, and lain on the couch for several hours, exhausted by a simple afternoon at the doctor’s. “Can I come over? We need to talk.”
“Why? What about your delivery?” I managed.
“Don’t worry about that, I’m off at five. Somebody else’s problem now. Petyr there?”
“Uh, yeah…no, he’ll be here in a little bit, last patient should be done now.” I wondered what she wanted him for, but the buzzing in my ears, the flashes in my eyes, the tingling in my fingers swamped any rational response.
“Good. See you soon.”
She swept in, still in her white coat with that stethoscope dangling around her neck, her face blank, unreadable. She sat down on the edge of the sofa, took my hand, squeezed it, and softly started, “Sarah, the CBC…”
“What?” I mumbled.
“That blood test I wanted you to get, a blood count. They have to double check the micro, the pathologist wants to look himself, but…Sarah, you might have leukemia.”
My mind went blank, the hum in my ears reverberating in my skull, almost in time with the throb between my eyes. “Wha…how…” was all I could could get out.
“Sarah, I’ve already talked with Dr. Viqueira in med onc at Dana-Farber. We made you an appointment with him tomorrow. He says he’ll probably suggest starting induction therapy this Friday.”
She must have noticed the glazed look in my eyes, reflecting my utter rejection of what she was saying. “I know, I’m sure, this is a shock, and there are ten thousand questions you’ll have. I’ll walk you through it, and make sure Petyr understands, but the one thing – the only thing – I want you to hear is this: you are in the best place in the world to treat this. And I’ll walk every step with you, help you understand, translate the medicalese. All you have to do is stay strong, be yourself, don’t despair. You’ll get through this.”
As she finished, Petyr walked in, shook a bit of rain off his overcoat, and looked with alarm at me on the couch, Stephanie by my side.
“What happened? Is everything all right?” he asked.
Steph patted my hand and stood up, saying, “Petyr. Hi. Let’s pull up those chairs from the dining room, sit here and talk with Sarah, OK?
For the next half hour, she reviewed with Petyr the profound anemia, low platelets, and crazed white cells they’d found on the CBC. Chemotherapy, survival rates: their talk drifted into that special medical language I only partially understood. Since it didn’t involve Ob, Peds, or high school Latin, at times they could have been speaking Aramaic. Words like thioguanine, cytarabine, adriamycin. Acronyms like DFS, IT. Chance of this, risk of that. I realized I was going to have to trust these two with my life, to know much better than I ever could, what this sudden shock meant, and how it could be thwarted. As they talked, I repeated over and over to myself like a mantra: “Not here, not now. I am here today, and I will see tomorrow.”
From some hidden cove deep inside, I finally gasped, “Will you please stop talking about me?” I looked pleadingly at Petyr. “Someone tell me, what’s going on? What’s going to happen?”
Steph’s eyes welled up as she said, “Petyr, I… can you…?”
His familiar formal tones, at other times almost comical, now served to reassure, to guide me towards understanding. My red blood cell count, shockingly low at 11 percent, explained my paleness, the profound exhaustion, the strange sensations. “Oxygen, the fundamental source of all our energy, can only travel on those red cells. Without them, it’s as if you are slowly suffocating. The white cells, the ones who’ve turned rogue, where the cancer is, are what keep you free of infection. But that’s not the immediate risk. Their mad drive to reproduce is crowding out the other immature blood cells in your bone marrow, where they all are made. That’s where we have to take the fight.” He leaned down, gently stroked my cheek, my neck, then went on. “First they will blast your body with powerful poisons – I’m sorry, that’s the only word for it – which break the DNA links in dividing cells.”
“In all dividing cells, Sarah,” Steph added. “Your gut, your…”
My hair, I thought.
“Yes, that’s what makes it hard. Once a week, for nine weeks, in a chair, through an IV, you’ll get those drugs, stop those bastards from taking over. It works, it works, it’s going to work.” His confidence was real, I knew. He was not going to lose me, not now, not because of this.
The next morning, Petyr called Wellesley, to cancel my work there through the end of the year. He spent the morning, time he should have been seeing his patients, finding emergency replacements to see my own small clientele. He was about to call the Institute, to cancel my classes there, when I hoarsely shouted “No!” I was not going to drop out now. “It’s not as if I’m going into the hospital. If the treatment’s on Friday, then Thursdays, won’t I be at my best, the day before?”
He knew me well enough not to argue.
Two days later, the cards started coming. From Jeanne, in England. From Marcia, Bev and Leslie. From Lizzie, now in Brazil with her husband, an oil engineer. And almost every other person in my date book. While I’d been sleeping away the exhaustion, he had been calling, then writing, seemingly everyone I knew for the last fifteen years. The only person I managed on my own was Mother.
“Hi, sweetie!” she brightly answered when I called that first night. “What did the doctor say?”
“Oh, mom!” was all I could come out with. Before I broke down, Petyr reached over, calmly took the phone, and proceeded to describe the diagnosis, the treatment plan, by the end probably convincing her I was well on the way to recovery. He also arranged for her return the next day.
She accompanied me that Friday to my first chemo treatment. In the waiting room, it seemed as if every other person wore a bandana on their head. Young children sat in chairs too large for them, their legs dangling, kicking languidly as they waited to be called. Older women, immobile with dark circles under sunken eyes sat next to downcast men with days’ old stubble. The air smelled of disinfectant, stirred by a slowly rotating ceiling fan. A poster of a kitten, eyes wide while she clung to a branch, urged us to “Hang in there!”
We each were called back in turn, some slowly shuffling, others pushed in wheelchairs. I whispered to my mother, “Is it me, or does this place feel sad to you?”
“Honey, you’re not them. You still have so much to do, so much to give, a life to live.” She took my hand, rubbed my arm, and said, “You’ve got to get the first punch in, knock this thing out.”
I looked at the slender bald boy of about 8 seated across from me. He dropped his chin, and through crinkled eyes, smiled back conspiratorially. I had an inspiration. “Mom, on the way home, there’s something I want to pick up.”
“What do you need, honey?”
“You’re right, I have to get the first blow in, take this on my own terms, not let those damn drugs and white cells beat me.”
Back at home, my vein still burning from the chemo, the nausea building inside like a steam shovel carving out a quarry, I unwrapped the package from Gary Drug. Standing in front of the bathroom mirror, I fiercely lifted a chunk of hair off my shoulder, and began to shave my head.
xiii
The day after Thanksgiving, Petyr dropped me off at my fourth weekly treatment. For the first time, I met with Dr. Viqueira alone, no mother, friend, or solicitous lover to filter the conversation or deflect my deepest fears.
“You’re doing quite well, Dr. Stein,” he began. “Your hematocrit is returning to normal. your differential is much better balanced, we’re seeing more normal white cells, far fewer immature forms. How are you feeling? Any new bruising?”
I smiled, straightening the black bandana on my head. “If you mean, am I sleeping less than 12 hours a night, then, yes, I’m feeling better. And no, I’ve stopped seeing those little red spots popping up all over my skin.” He jotted a few notes in my chart, nodding, while I continued. “But I’ve been reading, in the library, trying to make sense of the future…”
“Dr. Stein, I appreciate your desire to know what will, what’s going to happen. I’ve learned though, that statistics are meaningless, when it comes to the individual.”
“Meaningless? When it says, ‘less than 25% four-year survival rate’, that sounds pretty real to me.”
“Right. I could list all the numbers…”
Before he could start, I ticked them off myself. “Median survival, 22 months. Median disease-free interval after initial therapy, 40 weeks. And the numbers are even scarier, should I need another course of treatment.”
“But surely you know, from your own experience conducting research, for any individual, there are only two possibilities: either a 0%, or 100%, chance of any particular outcome. Which applies to you, we can not predict. And so…”
“And so, I am choosing to believe, for me, it will always be 100%. Chance of a positive outcome, I mean. I can’t imagine living any other way.”
I measured my progress by how I felt Thursday nights, attending seminars at the Institute. The first trimester, consisting of “Freud II: 1917-1939”, and “Technique I: The Analytic Stance”, I completed the week of my first treatment. The next trimester featured “Psychopathology I: Neuroses and the so-called higher functioning patient” and “Dreams”. I made sure to take a nap on Thursday mornings, and learned not to eat before each seminar. The others there studiously avoided any mention of my paisley-flecked bandanas and rapidly shrinking physique. While the clinic closed on Christmas and New Years, both Fridays that year, and my treatments moved to Thursday, the Institute was on its “end-of-year hiatus”.
New Years’s Eve, Petyr and I celebrated the successful completion of my initial 9 weeks of treatment. Dr. Viqueira pronounced it a success, so I could switch to monthly maintenance visits for my chemo. The chance of a cure was now at 30%.
“Any resolutions?” Petyr asked.
“I’m going back to work, going to start up again at my practice. And Dr. Goldman asked if I would re-join the team for a new study.”
“Oh? What on?” he asked.
“Another C-L project, this time with radiation therapy and psychiatry. You’ve heard about conservative surgery, for women with breast cancer, using radiation instead of simply cutting everything out?”
“Lumpectomy, I think it’s called?”
“Right. Well, no one’s studied who is opting for that, why they do, and how they feel about it. They’re going to interview 100 women who had that, 3, 4, 5 years ago. I could review what’s already be known there, then devise and pilot a questionnaire to guide the interviewers, and finally work on training them.”
“That doesn’t sound too stressful.”
“No, and it would fill my time on Mondays and Wednesdays.”
Petyr walked over to the audio console, started flipping though the albums. “Anything you want to listen to, tonight? To ‘celebrate’?”
I closed my eyes. Jamie Taylor singing solo at the Menemsha Community Center filled my vision. “James Taylor,” I offered. “Fire and Rain.”
While he warbled, “I walked out this morning and I wrote down this song/I just can’t remember who to send it to/I’ve seen fire and I’ve seen rain/I’ve seen sunny days that I thought would never end/I’ve seen lonely times when I could not find a friend/But I always thought that I’d see you again”, memories of Michael Harrison, sunny days on Vineyard beaches, walks along the Charles, our whole history, surged like a grass fire though my core. I remembered I’d always meant to return to those days, to write him a “letter” explaining it all. As I wondered if I’d ever get there, Petyr interrupted my reverie.
“Next? Carole King, You’ve Got A Friend?”
Returning to the reality of my current life, I smile up at Petyr and said, “Yeah…no, not that, but Tapestry, for sure. The end of that second side.”
We snuggled as Carole started singing, “Tonight, the light, of love is in your eyes…” Petyr seemed hesitant, almost reluctant to hug, to hold me closer. I tried smiling, caressing; even soft purrs didn’t do the trick. Finally, I said, “Go ahead, I won’t break…” and he got the idea.
My soul had been in the lost-and-found, and he’d come along to claim it. We crescendo’d along with her, “…You make me feel, you make me feel…” and once again, I was complete.
While the needle ticked over and over in the final groove, I asked, “I wonder, what kept you going, those first few years when you lost your parents, your birth parents?”
“I’ve thought about that, now and then. Remember, I was so young, I can’t remember – did I lose hope, did I feel I had no future?” He pulled the covers up above our shoulders, protecting us from the winter’s chill snaking though the single pane windows. “Last year, at one of our talks during the Institute dinner break, you said something which has stuck with me. You’ve had the answer all along. Do you remember?”
I puzzled my way back through those conversations, about love, and its often unspoken sub-text, sex. About creating couples, families – the “iron tyranny of DNA”, he’d called it. I closed my eyes, and pulled from deep within, “Life itself is reason enough to be living.”
He nodded. “That’s the secret, that’s what pulls us forward, even though we know what happens in the end. Sarah,” he murmured, “Sarah, you are the strongest person I know.” I frowned, ready to object. “No, I mean it. Watching what you’ve been through, the past two months, your life upended, your body ravaged first by disease, then by treatment, I simply can’t imagine. I don’t know if I could ever be so… your spirit…” Petyr at a loss for words, always humbling.
“I don’t feel that way. I’m just trying to make it through each day, is all. Make it to bed, wake up, and do it all again.”
“Listen. One thing I’ve seen, courage…courage and bravery are in the eyes of the beholders, not the courageous. I’m learning about them, by sharing your life.”
All that spring, I slowly built my strength, taking walks through the narrow outdoor alleys and the sub-basement corridors connecting the medical center’s buildings. With each monthly treatment, I came to relish the roller coaster of the treatments. First the sledgehammer to my gut, to my endurance. Then, after a week or two, a rebound, higher than before each time. As I neared my thirty-third birthday, once again, I felt strong enough to pull out that little pink diary, and began at last to discover my story, to understand what had brought me here, so I would know where to go.
xiv
Dear Mike – I began to write – I think a lot about the old days now — those were really good days for me. You helped me so many times when I was down or confused; I could always count on you for the right advice. I never had any other friends who cared about me the way you did. I hope sharing our story will show my thanks for that…
And so I began to probe my past, tentatively at first, easing in, trying to re-capture the sights, the sounds, the feelings of the times, the people, the places, that formed me.
Whenever Petyr saw me writing out in longhand and he asked, “How’s it going?” I would reply with some variation on, “I worry if I spend too much time dwelling in the past, the future disappears.” Still, a little here, a little there, and within a year, I had a stack of paper two inches high, ready to be typed up, re-read, and put away in a box, that mental box safe from tears, regrets, and anger.
Sometime that summer, Petyr took us out to dinner, ordered a bottle of Champagne, insisting I take a sip. As I lifted my flute, I asked, “What are we celebrating?”
He produced a large, white envelope, extracted a stapled sheaf of thick paper, numbers along the side of each page. “My divorce. The final act. Your pen, please?” I handed over my Rapidograph, and he began to initial each page, then finished on the final line with a grand flourish. Returning the pen, he rifled the stack, placed it back in the envelope, and announced, “Now, we’re free. Are you ready?”
“For what?”
“Do you think,” he began. “Do we think, it’s time we shared more? Found a place to live together? Over in Cambridge, they’re starting to build a new condominium complex. We can get in on the ground floor, so to speak, put our money down, reserve the best view, right across the river.” He reached over, took my hand, and smiled expectantly.
I nodded. “Three bedrooms, though.”
“Three bedrooms,” he said. “Why?”
“We each need an office.” It seemed obvious to me.
“What about the boys?”
“Well, you can put a bunk bed in yours, right?”
We went on like that, planning every detail. What furniture to buy, which kitchenware to keep, rugs, towels, the entire panoply of life together, the stability I envisioned in our future.
We moved in early January, 1983. Our first dinner guests were Steph and her fiancé. The small talk drifted for a while, then Steph asked, “Do you feel safe yet, Sarah? It’s been, what, over a year? You’ve been off the monthly treatments since September. There’s a glow in you I haven’t seen…”
Petyr took my hand, announcing, “She finally finished that project she’s been working on, writing a little book about her college days.”
Steph, surprised, asked, “A book? Why?”
“I tell Petyr, ‘It’s cheaper than therapy’!”
“But aren’t you in analysis already, what…?”
“I’m finding that telling the story to myself, first, late at night, to get the details right – then I can share it on the couch.”
Petyr laughed. “Dr. Kaplan doesn’t really have a couch, does she?”
I shook my head with a sad smile. He still had trouble with my sense of humor. “Euphemism, honey.”
“Hmm,” Stephanie speculated. “Sounds like you’re letting go of the past, the long-ago past.”
“Yeah, the long-ago helps me deal with the near-at-hand. When I think about dying…”
Steph shook her head firmly. “You are not dying, you’ve got your whole…”
“No,” I countered, “no, when I think about dying, I don’t think about me” – here, I swept my left hand down my body, my right hand pointing to my head – “I don’t think about all this being gone. It’s my story, who I was, who was with me, who loved me, who I loved, where it all was going, all the beauty that I saw – that’s what worries me, that that will disappear.”
“But we’d still remember you, your story. As long as you’re in our hearts, you’ll still be here,” Petyr asserted.
I touched his hand. “Memories fade. Worse, they get transformed, gauzed over into dreamy highlights. And then one day you forget, move on, or you’re gone, too, and what happens to me? I have to share the beauty as I saw it, capture it in amber, for myself, then let it go.”
“Can I see it?” Steph wondered.
I laughed. “You’ve seen my handwriting. You’ll never be able to read it, not without a microscope. No, wait until I type it up, OK?”
xv
For my birthday, my thirty-fourth birthday, Petyr brought home a giant present. Ripping off the ribbon and sparkly paper revealed three white cardboard boxes with purple cursive lettering, ‘Lisa”. The image of a keyboard on one, a strange object with a long purple tail on another.
“What is this?” I demanded.
Petyr proudly said, “A computer. A home computer. You have heard of the Apple? This is their next iteration.”
“Oh, come on. I could never use a computer. All that code, the green flashing light on the screen – would drive me nuts, I don’t have time to learn all that.”
“No, no, no,” he asserted. “This is supposed to be easy, much easier. See, they call this the ‘mouse’…” He proceeded to unpack all the parts, snapping cords into sockets, switching it on to reveal a stylized smiling face superimposed on a little box.
He was right, it only took me a week or so to get the hang of it. As I started to transcribe my “book” into the machine, he came in with both hands behind his back.
While the machine whirred softly in the background, he produced a clear glass vase, followed by red and yellow roses. After placing the bouquet on the desk next to the keyboard, he got down on one knee, took my hand, and was about to speak.
“Yes,” I said. “Yes, of course.”
“You do know I just came in to ask you, please, could you type a little more quietly?”
His eyes twinkled as he stood up, pulling me with him, closer, firmer, while I nodded, saying softly, “You can’t fool me, you know.”
After the initial joy subsided, we started to plan.
Before we got too far, I said, “Let’s not make any final decisions, now. I want to wait, wait until I’m a year past my treatment, disease-free, two years since the diagnosis. If I’m well, in remission, no relapse, then, yes, yes, we can plan our marriage.”
Petyr nodded, repeating, “Yes. Yes. You’re right, of course.”
xvi
October, we sat in Dr. Viqueira’s office, waiting while he came back with the test results at my two year check.
He sat down at his desk, straightening his coat. He looked briefly at Petyr, down again at the papers in his hand, than up at me.
“Dr. Stein, I’m sorry…we’re going to have to do a biopsy, go in and see exactly what’s going on in the bone marrow.”
Petyr almost shouted, “No! What’s happening? Is it back?”
Dr. Viqueira blinked twice, pulled his lips into a thin line, and said, “Yes. From the CBC, looks like it, yes.”
That night, Steph came over. Petyr was distraught, and couldn’t manage a simple sandwich, much less the calls we needed to make, searching for a bone marrow donor in anticipation of the pending biopsy.
“ He said we should test all the family members, my mother, Charlie, Henry,…”
“Lisa?” Petyr wondered.
“Lisa, too.” I answered. “Steph, if you call mom and Lisa in LA, I can handle Henry and Charlie. They can get tested where they live, right? And you’ll make sure the typing, the HLA antigen results, gets to their doctors? It’s all so confusing.” I paused in wonder. “A bone-marrow transplant…” I bit my lip as a shudder of fear rippled from my chest down to my knees. “I know one of them will…”
“Don’t worry, we’ll find one. This is going to work out, Sarah, it will.”
In the end, it was Charlie. He and mom arrived by Halloween, ready for the trip in to Dana-Farber on November 1st.
“I read about this, sis. Sounds like a lot of fun, when they stab us there,” he said, point to his lower back.
I smiled, took his hand, and said, “I’m sorry, putting you through this.”
“You’re the brave one, Janie. Point me in the right direction, I’m ready to go.”
Next morning, I waddled into the cath lab, mom tugging at the strings of my hospital gown, making sure it stayed closed, did not reveal too much.
“Don’t worry about it, mother,” I laughed drily. “They’ll just open it up again once I’m in there.”
Fussing, she said, “Oh, sweetie. Putting that giant needle in your arm…”
“My chest,” I said. “Under the clavicle. Don’t worry, it’s routine, they do it every day here.”
After the local and the antiseptic painting of my collar bone, I drowsed under the Valium and Nisentil. I wasn’t worried, merely curious, when I heard the doctor say, a little too loudly, “Pressure there!” The nurse asked, “What?”
“Extravasation,” he said. “I’m pulling back! Keep the pressure on!”
xvii
My days are filled with mystery and wonder now, inside this bubble. After the bone marrow transplant, they said I’ll be inside here through February, 12 weeks in all, Charlie’s cells kept me alive, but wouldn’t ward off the normal micro-flora we all live with, unthinking, every day. I would not survive a week exposed to that.
After much cajoling and sterilization, Petyr and Steph convinced them to let me take the Lisa in. I’d finished my story in September, but decided, it couldn’t end there, abandoning Michael Harrison to his future in Los Angeles, so now I’m writing it the rest of the way, all the way, to what end I do not know.
After the hematoma from the botched CVP resolved, they’d tried again, were successful, and I started sharing cells with my oldest sibling. I’d thought The Boy In The Bubble was a Hollywood fable, but soon learned that, no, immunocompromised patients actually lived in this splendid isolation, able to see, but never touch, the world outside, their friends, their family.
The second day, Petyr came in the room carrying another vase of flowers. He set them on the table outside the bubble’s port, and announced, “I don’t care, Sarah. I have set a date for us. I’ve got the hall, told the boys, made sure they’ll be there.”
“What? No, Petyr, I want to be whole, be well for you…”
“Nonsense. I’m not going to lose you. Not now, not this way. We’ll make it work.”
“When? How?”
“On a Sunday, May 27. Everyone will be there, you’ll see.”
Two days after my birthday, I thought. I can make it that far…
xviii
Sarah’s handed me her pen, and that composition book she carries everywhere.
“Mother, I can’t anymore. I just can’t. Will you take notes, make sure you write what I say, what happens, OK?”
Honey, you know I’m not a writer. Can’t someone else, Petyr…?
“No, it has to be you. You’ll know what to do, how to do it.” Sarah breaks down in another one of those coughing fits, then goes back to wheezing. She looks so tired, the circles under her eyes, her hair – her beautiful hair – so thin, so scraggly!
The doctor comes in, that busy one, who has to take care of all these people in the ICU. I don’t know how he does it. He really should get a haircut.
“Mrs. Stein,” he nods at me. “Sarah?” He lifts the sheets, listens to her back, her chest, breathing with her as he does.
“The pneumonia’s getting worse. The antibiotics aren’t enough,” he says. “It’s time for a ventilator, I think. You know what that means, Sarah?”
She nods. She must know, all the time she’s spent in hospital now. Then she shakes her head back-and-forth, back-and-forth. “No, no.” she struggles as she whispers. “Hooked up…to a machine…to breathe… for me. No…I’m done…with that.”
But Sarah, I say, your brother, Petyr, what about…
Again she shakes her head, “What’s the point…there’ll just be…another time…”. She falls back in bed. She looks exhausted.
The doctor asks, “Are you sure, Sarah? You know what this means, the chances of…”
“I know.” She pauses, another breath, a cough. “Today…today’s my birthday…It’s time…Time to let it go,” she says. “Let it go.”
xix
Petyr’s here this evening, he’s been here all day. Their wedding day. Or was. She made us cancel everything. I kept the flower order, brought them in, the white, the yellow seem so pure. I hope she notices.
He holds her hand, watching her breathe, each one a struggle now. She’s been sleeping all day, still here with us, but not, somehow. He looks at the clock, as it shudders a bit, that thing it does shifting past midnight to start another day. He stands up, leans over, kisses her cheek. She stirs, but doesn’t wake.
“I’m going for another coffee. You want anything, Miriam?”
No, I say, I’ll keep watch for now. Stretch a bit.
He leaves. Sarah moans, then so softly, so weakly I barely notice, she says, “Move…The light…”
What, honey? What is it, Janie? I lean forward, my ear nearly touching her cheek. Is there anyone else, someone you want me to call?
“He’s right here…I see him…it’s getting brighter…like a sunset … those rays…of light …and shadow…when it drops… below…a cloud…”
I grip her hand tightly. Shh, shh, I say. It’s going to be all right, Petyr’s coming back.
Her eyes still closed, she insists, “No, no,…he’s here…I can see him…getting closer.”
What do you see, sweetie, who is it?
“He’s reaching out…to me…for me…his arms…I feel a smile…his…