雙語·當呼吸化為空氣 保羅在病床上去世

2015年3月9日，星期一，保羅在病床上去世。家人都陪在他身邊。離病房不到兩百米的地方，就是八個月前我們的女兒卡迪呱呱墜地的產房。從卡迪出生到保羅去世，如果你曾經看到我們一家在本地的燒烤餐廳大吃牛排，或者微笑著分享一瓶啤酒，旁邊的嬰兒車上安睡著一個睫毛長長、深色頭發(fā)的小嬰兒，你大概完全想不到保羅的生命很可能只剩下不到一年。對于這一點，我們自己也無法理解。
Paul died on Monday, March 9, 2015, surrounded by his family, in a hospital bed roughly two hundred yards from the labor and delivery ward where our daughter, Cady, had entered the world eight months before. Between Cady’s birth and Paul’s death, if you’d seen us sucking on ribs at our local barbecue restaurant and smiling over a shared beer, a dark-haired baby with long eyelashes napping in her stroller beside us, you’d never have guessed that Paul likely had less than a year to live, nor that we understood that.

卡迪降生后的第一個圣誕節(jié)前后，她剛滿五個月，保羅體內的癌癥開始抗拒醫(yī)生在特羅凱之后開的第三期的藥。而這之后的化療也不再起作用了。正逢長假，一家人都團聚在保羅童年時代的家，亞利桑那的金曼?？ǖ洗┲∮刑枪终鹊氖孢m睡衣，吃了第一口固體食物，是搗得爛爛的番薯泥。家里洋溢著節(jié)日的喜慶氣氛，燭光搖曳，大家談笑風生。幾個月來，保羅的體力日益下降，就算頭上懸著痛苦的愁云慘霧，我們仍然繼續(xù)享受著開心快樂的每一刻。我們舉辦溫馨的晚餐聚會，晚上互相擁抱偎依，凝視著女兒閃亮的雙眸，欣賞她與生俱來的平靜，感到由衷的快慰。當然，保羅一直堅持寫作，他斜倚在輪椅中，身上包裹著一條溫暖的羊毛毯。生命的最后幾個月，他以常人難以想象的全神貫注，完成了這本書。
It was around Cady’s first Christmas, when she was five months old, that Paul’s cancer began to resist the third-line drugs recommended after Tarceva and then chemotherapy had stopped working. Cady tried her first solid food during that holiday season, snug in candycane-striped pajamas, gumming mashed yams as family gathered at Paul’s childhood home in Kingman, Arizona, the house aglow with candles and chatter. His strength waned over the following months, but we continued to experience joyful moments, even in the midst of our sorrow. We hosted cozy dinner parties, held each other at night, and delighted in our daughter’s bright eyes and calm nature. And, of course, Paul wrote, reclining in his armchair, wrapped in a warm fleece blanket. In his final months, he was singularly focused on finishing this book.

冬去春來，周圍的一片玉蘭樹盛開出大朵大朵粉色的花，保羅的健康狀況卻急劇惡化。到2月底，他已經需要輔助供氧來進行正常呼吸了。我常常把他分毫未動的午飯扔進垃圾堆，蓋住之前分毫未動的早飯。幾個小時后，又往上面倒了分毫未動的晚飯。他以前很愛吃我做的早餐三明治：雞蛋、香腸和奶酪，三樣一起吃。但他的胃口逐漸變差，就變成簡單的吐司和雞蛋，后來只剩下雞蛋，一直到雞蛋也吃不下。就連我計算好熱量打的果蔬汁，以前是他最愛喝的，現在都提不起胃口了。
As winter turned to spring, the saucer magnolias in our neighborhood bloomed large and pink, but Paul’s health was declining rapidly. By late February, he needed supplemental oxygen to keep his breathing comfortable. I was adding his untouched lunch to the trash can atop his untouched breakfast, and a few hours later I’d add an untouched dinner to the pile. He used to love my breakfast sandwiches—egg, sausage, and cheese on a roll— but with his waning appetite we’d changed to eggs and toast, then just eggs, until even those became intolerable. Even his favorite smoothies, the glasses I filled with a steady stream of calories, were unappetizing.

保羅睡得越來越早，聲音出現間歇性的含混不清，而惡心的感覺則時刻襲來。CT掃描和腦部核磁共振確診了保羅肺部的癌癥在惡化，腦子里又長了新的腫瘤，包括軟腦膜轉移癌，罕見的病，惡性腫瘤在軟腦膜發(fā)起致命性的浸潤，一般醫(yī)生都預測這樣的病人只剩下幾個月的生命，而且神經很有可能迅速衰退。這件事對保羅打擊很大。他沒說什么，但作為神經外科醫(yī)生，他當然很清楚自己即將面對什么。保羅當然早就接受了自己時日無多的事實，但神經衰退這個新的負擔令他備感沮喪。他可能喪失活著的意義，完全失去自我，變成一個廢人，光想想就讓人痛苦萬分。我們和保羅的腫瘤醫(yī)生一起制定策略，列出了保羅的當務之急：盡量保持精神敏銳度，有多久算多久。我們參加了一個臨床試驗，咨詢了一位神經腫瘤專家，還見了緩和醫(yī)療團隊，討論臨終關懷的辦法，盡量提高他最后時光的生活質量。我努力讓自己堅強，但還是免不了心如刀割，想著他有多么痛苦，擔心他最多只能活幾個星期。和他十指緊扣時，我會幻想他的葬禮。那時候我都不知道，保羅只剩下幾天時間了。
Bedtime crept earlier, Paul’s voice slurred intermittently, and his nausea became unremitting. A CT scan and brain MRI confirmed worsening cancer in Paul’s lungs and new tumors that had landed in his brain, including leptomeningeal carcinomatosis, a rare and lethal infiltration that brought with it a prognosis of only several months and the looming shadow of swift neurologic decline. The news hit Paul hard. He said little, but as a neurosurgeon, he knew what lay ahead. Although Paul accepted his limited life expectancy, neurologic decline was a new devastation, the prospect of losing meaning and agency agonizing. We strategized with Paul’s oncologist about his top priority: preserving mental acuity as long as possible. We arranged entry into a clinical trial, consultation with a neurooncology specialist, and a visit with his palliative-care team to discuss hospice options, all in service of maximizing the quality of his remaining time. My heart swelled even as I steeled myself, anticipating his suffering, worrying that he had only weeks left—if that. I envisioned his funeral as we held hands. I didn’t know that Paul would die within days.

保羅在這世上的最后一個星期六，我們是在舒適的客廳里度過的，家人都在。保羅坐在輪椅上，抱著卡迪。他父親在旁邊看顧。他母親和我坐在不遠處的沙發(fā)上。保羅給卡迪唱歌，在膝頭輕輕搖晃著她。她咧嘴大笑，目光顯然聚焦在爸爸鼻子上的輸氧管上。我拒絕了所有家人以外的探望，保羅的世界變小了，但他告訴我：“我希望大家都知道，就算我不見他們，也是愛著他們的。我珍惜與他們的友誼，少喝一杯酒也不會改變什么。”那天他什么也沒寫。這本書的手稿也只完成了一部分。保羅也知道他不大可能寫完了，精力體力不支，腦子不太清楚，也沒時間了。
We spent Paul’s last Saturday with family in the nest of our living room, Paul holding Cady in his armchair; his father on my nursing glider; his mother and I on sofas nearby. Paul sang to Cady and bounced her gently in his lap. She grinned widely, oblivious to the tubing that delivered oxygen to his nose. His world became smaller; I deflected non-family visitors, Paul telling me, “I want everyone to know that even if I don’t see them, I love them. I cherish their friendship, and one more glass of Ardbeg won’t change that.” He didn’t write anything that day. The manuscript for this book was only partially finished, and Paul now knew that he was unlikely to complete it—unlikely to have the stamina, the clarity, the time.

為了給臨床試驗做準備，保羅把一直在吃的定向治療的藥給停了。這個藥本來在控制癌癥上就療效甚微，但停藥也有風險，可能導致癌癥迅速擴散惡化。所以，保羅的腫瘤醫(yī)生叫我每天都給他錄像，讓他做同樣的事，觀察他的語言或體態(tài)有沒有出現缺陷。“四月是最殘忍的月份，”——那個周六，保羅在客廳大聲朗讀，我在一旁錄像，他選擇了艾略特的《荒原》——“把回憶和欲望摻和在一起／又讓春雨催促那些遲鈍的根芽?！彼€超額完成任務，把書背面向上放在膝頭，堅持進行背誦。大家都被逗笑了。
To prepare for the clinical trial, Paul had stopped taking the daily targeted-therapy pill that had been insufficiently controlling his cancer. There was a risk that the cancer might grow rapidly, or “flare,”after he stopped the medication. Therefore, Paul’s oncologist had instructed me to videotape him daily, doing the same task, to track any deficits in his speech or gait. “April is the cruellest month,” Paul read aloud in the living room that Saturday as I filmed, choosing T. S. Eliot’s The Waste Land as his script. “Mixing memory and desire, stirring / Dull roots with spring rain.” The family chuckled when, though it was not part of the assignment, he set the book facedown on his lap and insisted on reciting from memory.

“也就是他才做得出來！”他媽媽微笑著說。
“So like him!” his mother said, smiling.

第二天，周日，我們祈禱著能繼續(xù)平安無事地度過周末。如果保羅感覺還行，我們就去教堂，然后帶卡迪和堂哥堂姐們去山上公園里的嬰兒秋千那邊玩。我們會繼續(xù)消化最近這些令人痛苦的消息，分擔憂傷，珍惜在一起的時光。
The next day, Sunday, we hoped for a continuation of the calm weekend. If Paul felt well enough, we would attend church, then take Cady and her cousin to the baby swings at the park up the hill. We’d continue to absorb the recent painful news, share the sorrow, savor our time together.

然而天不遂人愿，時間加快了腳步。
But instead, time sped up.

周日清早，我摸了摸保羅的額頭，發(fā)現燒得厲害，40℃。雖然他看起來好像挺舒服的，也沒有其他新癥狀。幾個小時內，我們就在急救室進進出出。保羅的父親還有蘇曼都來幫忙。醫(yī)生開了抗生素預防肺炎（保羅的胸片上全是密密麻麻的腫瘤，有炎癥可能也看不出來）之后，我們回了家，家人都等在那里。不過，這會不會不是肺炎，而是癌癥迅速惡化的征兆呢？下午，保羅打了個盹，還算舒服，但病情顯然很嚴重。我凝視著他睡覺的模樣，突然哭了起來，于是輕輕走到客廳，發(fā)現他父親也在流淚。我已經開始想念保羅了。
Early Sunday morning, I stroked Paul’s forehead and found it scorching with fever, 104 degrees, though he was relatively comfortable and free of other new symptoms. We made it in and out of the emergency room within a few hours, Paul’s father and Suman with us, returning home to the rest of the family after starting antibiotics in case of pneumonia (Paul’s chest X-ray was dense with tumors, which could obscure an infection). But was this, instead, the cancer progressing rapidly? Paul napped comfortably in the afternoon, but he was gravely ill. I started to cry as I watched him sleep, then crept out to our living room, where his father’s tears joined mine. I already missed him.

周日晚上，保羅的病情突然惡化。他坐在床邊，呼吸很困難，真是讓人心驚肉跳。我叫了救護車，這次，保羅是躺在輪床上進的急救室，他的父母緊緊跟在我們身后。保羅轉頭看著我，低語道：“也許這就是結束了?！?br>Sunday evening, Paul’s condition worsened abruptly. He sat on the edge of our bed, struggling to breathe— a startling change. I called an ambulance. When we re-entered the emergency room, Paul on a gurney this time, his parents close behind us, he turned toward me and whispered, “This might be how it ends.”

“我一直陪著你呢?！蔽艺f。
“I’m here with you,” I said.

醫(yī)院的各位像往常一樣熱情地問候保羅，但觀察了他的情況之后就迅速開始行動了。他們做了一些初步檢查，用面罩蓋住他的鼻子和嘴，用BiPAP呼吸機輔助他的呼吸。這種呼吸輔助系統(tǒng)能在他每次吸氣時通過機械原理提供大量流通的空氣，基本上就代勞了他的呼吸活動。BiPAP的確有助于呼吸機能的正常運轉，但對病人來說也是不小的負擔，噪音很大，威力很強，每一次呼吸都會把兩瓣嘴唇吹得“相距甚遠”，就像那些把頭伸出車窗外的狗。我站在他身邊，斜倚著輪床，保羅握著我的手。呼吸機發(fā)出穩(wěn)定均衡的“呼——呼——”聲。
The hospital staff greeted Paul warmly, as always. But they moved quickly once they saw his condition. After initial testing, they placed a mask over his nose and mouth to help his breathing via BiPAP, a breathing support system that supplied a strong mechanized flow of air each time he inhaled, doing much of the work of breathing for him. Though it helps with respiratory mechanics, BiPAP can be hard work for a patient—noisy and forceful, blowing one’s lips apart with each breath like those of a dog with its head out a car window. I stood close, leaning over the gurney, my hand in Paul’s as the steady whoosh, whoosh of the machine began.

保羅血液中的二氧化碳含量高得嚇人，這說明他難以承受目前的呼吸活動。驗血結果表明，有些過量的二氧化碳已經累積了幾天，甚至幾個星期。這段時間他的病一直在持續(xù)惡化，肺部也在逐漸衰竭。他的大腦慢慢適應了高于普通標準的二氧化碳含量，所以人還算清醒。他能夠觀察各種癥狀和現象。作為醫(yī)生，他明白這些檢查結果預示著糟糕的結局。我也明白。我跟在他身后，醫(yī)護人員推著他走向重癥監(jiān)護室。從前，他的很多病人在神經手術前后都在這樣的病房里痛苦掙扎過?，F在，他的家人都聚集在床邊，坐在塑料椅上?！拔視枰骞軉?？”到了病房，他在BiPAP呼吸的間隙問我，“我應該被插管嗎？”
Paul’s blood carbon dioxide level was critically high, indicating that the work of breathing was overwhelming him. Blood tests suggested that some of the excess carbon dioxide had been accumulating over days to weeks, as his lung disease and debility had advanced. Because his brain had slowly become acclimated to higher-than-normal levels of carbon dioxide, he remained lucid. He observed. He understood, as a physician, the ominous test results. I understood them, too, walking behind him as he was wheeled to an intensive-care room, one where so many of his own patients had struggled before or after neurosurgery, their families assembled in vinyl chairs by their bedsides. “Will I need to be intubated?” he asked me between BiPAP breaths when we arrived. “Should I be intubated?”

那一夜，保羅都在討論這個問題，和他的醫(yī)生、家人進行了一系列談話，最后變成我倆單獨的對話。午夜時分，危重醫(yī)學的主治醫(yī)生，也是保羅長期以來的良師益友，進了病房，和家人討論治療方案。他說，BiPAP只是暫時的緩兵之計。唯一還能再試試的就是給保羅插管——給他上那種大型的呼吸機。
Through the night, Paul discussed that question in a series of conversations with his physicians, his family, and then just me. Around midnight, the critical-care attending, a longtime mentor to Paul, came in to discuss treatment options with the family. BiPAP was a temporary solution, he said. The only remaining intervention would be for Paul to be intubated—put on a ventilator.