A Little Love Story (18 page)

Book Four

D e c e m b e r

1

F
OR A WHILE THEN
, during the last week of November and the first week or so of December, Janet’s body went into a resting mode, as if preparing for some great private exertion. I had been writing to my brother about her every few weeks, and some where near the start of December I sent Ellory a note saying she was not getting better and asking him to pray for her—not the kind of thing I had ever done. Janet’s new doctor was a very small, coffee-skinned, tight-mouthed fellow named Ronald Ouajiballah. He was from Fiji or the Solomon Islands, I could not remember which, and he was as different from Eric Wilbraham as two people in the same profession can be. Even the way he touched Janet was different. I never saw him at her bedside when he didn’t have a hand on her shoulder or arm or foot, and it was a personal, not a professional hand, the touch of a cousin with a medical degree. He switched around her medicines, beefing up the Albuterol inhaler with another steroid, adding into the IV mix an antibiotic cocktail called Zithromax, which was used for bronchitis and sinus infections, and usually prescribed for CF patients with less lung damage. He discovered she had some kind of allergy called ABPA, and prescribed prednisone. All of this seemed to help her breathe more easily.

What helped her most was just that, without pretending everything was fine,
il dottore
, as we called him, didn’t stop trying, and didn’t seem to have built up a wall to protect himself from his patients’ pain and discomfort. When the flesh around the shunt in Janet’s right arm became inflamed he had the nurses move it right away; when the pain of the strenuous coughing overwhelmed her, he was there with Valium or Oxycodone—she did not have to whimper and scream to make it real to him.

For those two weeks we fell into a routine: I stopped in to see Janet before work—usually with a raspberry muffin from a place she liked, though she had very little appetite—and spent three or four hours there at night. I brought her newspapers and political magazines. Her mother, who believed in the healing powers of red meat, brought meatball and roast beef sandwiches that Janet took one look at and set aside. If she could talk we talked about everything around the edges of us—the weather, the world, the strenuous craziness of the early Christmas season. Gerard visited a few times and made her laugh with his Bob Dylan imitations (for which he was locally famous), singing “Train of Love” so loud at one point that the nurses came in to ask him to cool it. We were at the tail end of Jacqueline’s addition—hanging interior doors, grouting bathroom tile—and she was pleased, and we had our priorities straight, and so, on those early December days, we didn’t worry about cutting ourselves a little slack.

Janet was still eleventh on the transplant list, and no one was talking about her leaving the hospital anymore. But for those short, cold days we all pretended things could go on like that indefinitely. It was a kind of trick, a wishful self-hypnosis, and I suppose we all knew it—Janet’s mother, me, the orderlies and good nurses who emptied her bedpans and rubbed her back and changed her IV—but we needed a stretch of relative peace then, and for fourteen or fifteen days we had it.

And then, on the second Sunday of the month, the trick stopped working. That day I took my mother out for a nice Yankee pot roast lunch and an ice cream sundae and spent a little time watching TV with her in the community room at Apple Meadow. I hoped she would remember the Thanksgiving dinner at Amelia’s house—the first good hour at least—but it seemed to have left no mark on her memory. Janet had skidded off her radar screen. She went on and on about Lauren, a sometime friend who lived down the hall and who, my mother seemed to think, was constantly chasing the men residents who were rumored to be still capable of having sex. “Your father and I enjoy it as much as the next person,” she told me, in a voice right out of the high school hallways. “Probably more than the next person, if you want to know. But we are discreet about it, Ellory. Why, just last week we were in Aruba, and you children were asleep in your rooms and they have these beaches there, you know, not far from the hotel, and we sneaked out on the beach and he started to—”

“Mum, you don’t want to keep watching football, do you?” I said.

And so on.

When I got back to my apartment the light on the phone machine was blinking, and Janet’s mother’s voice was on the tape. “Jake, Jake, Jake. Come right away when you get this. Come right away.”

Janet was all bones and sallow skin, eyelids slowly fluttering, incommunicado. Her left lung was working like an old, worn-down bellows that had been mostly filled up with sand, and her right lung was not working at all.

I sat there with her and her mother for several hours, watching her, touching her, sinking inch by inch in a cold quicksand. Amelia was making the rosary beads go through her fingers faster and faster, and would not eat, and would not leave the room. I stayed until ten o’clock, then left the hospital and just drove aimlessly back and forth on the long east-west avenues of the Back Bay: Beacon to Marlborough to Boylston to Commonwealth, just staring out at the holiday lights, just shifting gears, just going from brake to gas to brake and slamming in the clutch. Snow was falling, large indifferent flakes twirling and skidding through the headlight beams. Eventually, I turned west onto Commonwealth and kept going as if headed home, and then, because I was near Betty’s, I stopped and bought two coffees and half a dozen doughnuts—Carmine wasn’t there—and took them over to Gerard’s.

Gerard rented the top floor of a maroon and gold Victorian in North Cambridge, not far from where Anastasia and the girls lived. Two small bedrooms, a room for his books, computer, and bicycles, a kitchen and bath—the place suited him well enough, though the ceilings slanted down in a way that made for a lot of bruised foreheads. “It has encouraged me to begin dating short women,” he liked to joke.

I told him about the change in Janet’s condition. We drank the coffee and went through all the doughnuts—unusual for him—and then we sat at his fifties-style Formica-topped table, which was the one piece of furniture Anastasia had let him take from the house, and looked out different windows. I called my apartment four times and the hospital twice. I did not want to go home. At last I said, “Let me look at the computer, will you?”

I brought up the search engine and plugged in the same thing I always plugged in:
cystic fibrosis
and
lung transplants
. The same 239 pages came up. I started to flip down through them, looking for something new, but Gerard was standing at my shoulder. “Try something else, will you?” he said impatiently. “That’s not the way to do research.”

“Something else like what?”

“I don’t know. Anything.
Last ditch
or something. Don’t just hit the same stupid nail in over and over again. Refine the search. What’s wrong with you?”

I typed in
cystic fibrosis, transplants, last ditch
, without much hope, and got forty-seven pages. I’d seen most of them before: stories of fifteen-year-olds whose lives had been saved, or prolonged, by a cadaveric transplant; professional papers so filled with medical terminology that you needed a translator to understand one-tenth of them; statistics on survival rates with various bacteria, in various hospitals, in various countries. I tapped the down arrow without much enthusiasm. When I hit the eleventh page I saw
Living Lobar Transplantation in Cystic Fibrosis Patients
, and I stopped there. I almost moved on, but something was making me keep looking at those words, and then a little faint bell sounded, a little blink of light.

“What?” Gerard leaned down closer.

I opened the page and we read it.

What it said was that, for cystic fibrosis patients, a lung transplant was the treatment of last resort. I knew that already. It went on to say that the number of people who wanted new lungs far exceeded the number of lungs available at any given time. I knew that, too. But in the next paragraph there was something about a surgeon in California who had been the first to try what was called a “living lobar transplant,” in 1993, removing a lobe each from two healthy donors and sewing them into a patient whose lungs had been destroyed by the same bacteria Janet had. The patient had lived three years. The operation was riskier and more complicated and more expensive than the usual cadaveric transplant, and so it was done only about a dozen times a year in America, but some recipients were still alive and doing well seven years after they’d received the new lobes.

There were six or eight more paragraphs, having to do with complications and problems, but I did not want to know about that then. “My mother mentioned this,” I told Gerard.

“Your mother mentions it,” he said over my shoulder, in the tone of voice he reserved for the courts and the IRS and the big multilingual corporations. “She’s got sixty-three brain cells left, she mentions it. Nobody else says a word.”

Before he was finished with that sentence, I was offline and on the phone to the hospital, asking for Doctor Ouajiballah. But it was one o’clock in the morning. Doctor Ouajiballah, the nurse on duty told me, would not start rounds again until eight.

When I hung up, Gerard said, “I’ll doan.”

“What?”

“I’ll doan. You need a donor, I’ll doan. I’ll give her one of my lobes.”

“You wouldn’t be able to race anymore.”

“Get your priorities straight,” he said. “It would be a way of getting inside her body without actually betraying my best friend. You gonna compare bike racing with that, Colonel?”

“No.”

“Good. You’re still in the general vicinity of sane, then. Go home and let me sleep.”

2

I
DROVE HOME
and went to bed for a while and then got up and put my clothes back on. I went into the painting room and walked in circles. I looked at the unfinished paintings in one of my racks, paced some more, stood at the window. Usually if I leave a canvas alone for a month or two, I come back to it with a fresh eye. I see everything that’s wrong and I think I see how to try to make it right. It’s something like looking back on your own life and being able to change part of it—things you blurted out, people you should have been kinder to, or blunter with—except that your life is cut in stone and your painting mistakes are only blots of colored oil pressed onto linen. Those patches of color show the deep patterns of your mind, though, which is why it seems so important to get them exactly right.

The painting of Janet in her sea-green pajamas was sitting in one of the racks I’d built. When I took it out and set it up on the easel I could see how little I had known her when I did it. She looked smart and pretty, when in fact she was smart and pretty and almost unbelievably brave. Every morning when I walked into her room at the hospital I could see that bravery in her because all through the night she had been a step or two this side of suffocation. Every day she coughed up and spit out as much as a quart of green and bloody mucus—not pleasant to think about, excuse me. But she did that, lived that. Not once, not just one awful time, but night after night. Not one sip of GoLYTELY, but glass after glass. Not one annual invasive procedure, but dozens of them—bronchoscopies, enemas, throat cultures, sinus irrigations, shunts, IVs, pinpricks, blood tests, intestinal surgeries—from the time she was old enough to hold her head up without help. And she woke up day after day and went about her life, trying to be pleasant, wanting to be normal, working, cleaning her apartment, facing everything she had to face without making a big fuss about it. There was no way to measure bravery like that. There were no medals given for it. Instead of calling you a hero and making a fuss over you on TV or in the magazines, people heard the wet cough and shot you nasty looks, moved away from you in subway cars, made remarks in movie theaters. Natural enough from their point of view, maybe. But a kind of second-degree torture for Janet. I had not understood all that when I tried to put her on a canvas.

So I mixed white and red and brown in different amounts on different places on my glass-topped table until I had a shade of skin that seemed right, then I wiped almost all the paint from the brush and ran the tip of the bristles diagonally in under her cheekbones, one stroke each side. I cut a sixteenth of an inch from her smile, one stroke each side. Each of her irises got one more spark of light. I tried to make it so you could see the tiny hairs on the veins on the backs of her elegant hands, and I made her hair shinier than it had been in months. In all, I put maybe ten touches of paint on the canvas.

And then, just before going to bed, I ran some lighter gray here and there into the background, because the first time around I had made it one shade too dark.

3

I
N THE MORNING
I brought Janet flowers with the raspberry muffin, but I did not say anything about what I’d seen on the computer the night before. It was not easy to do that, and I was not sure it was the right thing to do. But hope is an almost-tame lion—gorgeous to look at and capable of turning on you in a nanosecond. According to the nurses on duty, she’d had a miserable night and couldn’t eat or talk, and I didn’t want anything else that could hurt her to be in the room then. I stood or sat by the bed and held her long fingers. I pulled the blanket up an inch higher on her chest. I wiped away the saliva that dribbled down her chin. A little bit after eight o’clock she moaned and slowly woke up. We made eye contact, she squeezed my hand, and I almost told her. There was just about nothing left of her—the beating heart, a few weak puffs of air, the movement of her eyes, enough strength to say, “Hi, Joe Date,” in a voice that was like three scratches from a broken violin. I opened the get-well cards from her cousins and coworkers, one from the governor himself. I read them to her and turned them so she could see what people had written: how much they missed her and were praying for her; how they knew everything would be fine. When I couldn’t stand to be there anymore, I kissed her eyelids, said I would be back that night, and went out of the room as if I were only headed off to work.

Doctor Ouajiballah weighed maybe a hundred and forty pounds. I nearly knocked him flat going fast around a corner of the hospital corridor, looking for him. I didn’t even say I was sorry, or good morning. I said, “Living lobar transplant.”

He lifted his coffee-brown eyes to me and said, in his soft, lilting, Pacific Island voice, “Yes?”

“Why didn’t anyone tell us about a living lobar transplant?”

“I assumed Doctor Wilbraham had done so.”

“He didn’t.”

“I assumed you knew it was one option.”

“We didn’t.
Is
it an option?”

He pinched his lips together and tilted his head sideways. “It’s not commonly done, sir. You would need two donors.”

“We have them.”

“They would have to match blood type or be O-positive.”

“I’m O-positive.”

“The other donor would have to be. And be of a certain size. Each lobe would have to be large enough to take up much of the space left by the removal of a whole adult lung. The body abhors a vacuum, sir.”

“He’s an inch shorter than me. He’s a champion bicycle racer.”

“You cannot be a smoker, or an asthmatic. You will have to be in excellent cardiovascular condition. The psychological motivation must be appropriate.”

I looked at him.

“There are many factors,” he added weakly.

I said, “The insurance company won’t pay for it, am I right?”

He pinched the skin over his Adam’s apple and shifted his eyes to the back of a passing nurse.

“Will they pay for something like that or not, at this point?”

“It’s a quarter of a million dollars, at a minimum.”

“Will they, or not?”

“They do not like to, not in general. In the case of the types of bacteria Janet harbors—one bacterium in particular—the data on survival after such a procedure is not encouraging. Many hospitals will not do it.”

“Has this hospital ever done it?”

“Yes.”

“On somebody with that bacterium?”

“Yes. In fact, twice that I am aware of.”

“And the people lived?”

“Yes, at first. One is still alive.”

“Will you recommend it for Janet, officially, in writing?”

“Many surgeons will not do it.”

“Is there a surgeon here who does it?”

“There was. The very finest surgeon. He retired three weeks ago, unfortunately. If he were here I would recommend it. But, if we were to do it now, without him, we would have to go to New York.
If
the donors are qualified.
If
the insurance company will pay.
If
patient is strong enough to endure traveling, and to survive the procedure itself.”

There was a bustle of traffic in the hallway. Someone rolled an empty gurney past us and we moved aside. A doctor came hurrying in the opposite direction and nodded at Ouajiballah. He nodded back at her.

“I want one thing from you,” I said, when no one could hear. “I want the home address of the surgeon.”

“His name is Leicus Vaskis. His address, home address, is in Dover, Massachusetts, I believe. I could perhaps find it for you, though it would be highly irregular for me to give that information out.”

“This seems like a good time for highly irregular, don’t you think?”

He looked at me. He raised and lowered his eyebrows.

“I want your word that if he agrees to do it, you’ll recommend that the insurance company pay for it.”

He raised his eyebrows a second time. It was some kind of island code for yes. He said, “If all other factors are in order, I would surely consider doing that.”

“Why didn’t you consider doing it before?”

“Because the chances of success at this point are exceedingly slim, sir. Because I wasn’t her doctor. Because it should rightly have been tried two weeks ago if we were going to try it.”

“How much time do we have before…before it would be too late to try?”

“At the minimum, two days. At the maximum, I would guess, ten days.”

I asked
il dottore
another handful of questions, yanking the information out of him, short melodies of polite and beautifully cadenced speech, and then I thanked him three times and nearly crushed his hand in mine, and, instead of waiting for the elevator, I ran down the four flights of stairs.

From a pay phone in the lobby I called Gerard’s cell. I knew he would be at the job site, and I guessed he’d be putting hardware on the louvered bifold doors in the professor’s new bedroom. Every couple of weeks he changed the way he answered his phone: sometimes it would be a quote from Anna Akhmatova, or a scrap of T. S. Eliot; because he had a fondness for Chinese women, he’d ask a waiter at a Chinese restaurant how to say, “I know you love me,” in Mandarin, and then practice it until he believed he’d gotten it right. Anything but a simple “hello.” It was funny sometimes; other times it made you crazy.

“Nixon residence. Gerard the plumber,” he said when he picked up.

“Gerard.”

“Speaking.”

“I talked to Ouajiballah, and it’s a possibility.”

“That’s what we like to hear!” he said. “What’s Janet’s blood type?”

“O-positive, like me.”

“I can’t doan, then. I’m AB-negative. I stayed up until three last night doing research.”

“Alright.” I kicked the base of the telephone, hard. “Alright, we’ll find somebody. Do you know how to get to Dover?”

“Of course. I go there regularly. My bookie lives there.”

“Forget the closet hardware for now. And forget the damn jokes, will you please? Meet me at my place at nine-fifteen.”

“Yes, Mister Liddy,” he said, and hung up.

I swung by Doctor Ouajiballah’s office, which was in a building next to the hospital. When I told his secretary my name, she handed me a manila envelope, which I opened in the hallway. Inside was a piece of paper with the logo of a pharmaceuticals company on it and beneath the logo: “1339 Madison Road.”