双语·当呼吸化为空气 保罗在病床上去世

2015年3月9日，星期一，保罗在病床上去世。家人都陪在他身边。离病房不到两百米的地方，就是八个月前我们的女儿卡迪呱呱坠地的产房。从卡迪出生到保罗去世，如果你曾经看到我们一家在本地的烧烤餐厅大吃牛排，或者微笑着分享一瓶啤酒，旁边的婴儿车上安睡着一个睫毛长长、深色头发的小婴儿，你大概完全想不到保罗的生命很可能只剩下不到一年。对于这一点，我们自己也无法理解。
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.

卡迪降生后的第一个圣诞节前后，她刚满五个月，保罗体内的癌症开始抗拒医生在特罗凯之后开的第三期的药。而这之后的化疗也不再起作用了。正逢长假，一家人都团聚在保罗童年时代的家，亚利桑那的金曼。卡迪穿着印有糖果手杖的舒适睡衣，吃了第一口固体食物，是捣得烂烂的番薯泥。家里洋溢着节日的喜庆气氛，烛光摇曳，大家谈笑风生。几个月来，保罗的体力日益下降，就算头上悬着痛苦的愁云惨雾，我们仍然继续享受着开心快乐的每一刻。我们举办温馨的晚餐聚会，晚上互相拥抱偎依，凝视着女儿闪亮的双眸，欣赏她与生俱来的平静，感到由衷的快慰。当然，保罗一直坚持写作，他斜倚在轮椅中，身上包裹着一条温暖的羊毛毯。生命的最后几个月，他以常人难以想象的全神贯注，完成了这本书。
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.

冬去春来，周围的一片玉兰树盛开出大朵大朵粉色的花，保罗的健康状况却急剧恶化。到2月底，他已经需要辅助供氧来进行正常呼吸了。我常常把他分毫未动的午饭扔进垃圾堆，盖住之前分毫未动的早饭。几个小时后，又往上面倒了分毫未动的晚饭。他以前很爱吃我做的早餐三明治：鸡蛋、香肠和奶酪，三样一起吃。但他的胃口逐渐变差，就变成简单的吐司和鸡蛋，后来只剩下鸡蛋，一直到鸡蛋也吃不下。就连我计算好热量打的果蔬汁，以前是他最爱喝的，现在都提不起胃口了。
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.

保罗睡得越来越早，声音出现间歇性的含混不清，而恶心的感觉则时刻袭来。CT扫描和脑部核磁共振确诊了保罗肺部的癌症在恶化，脑子里又长了新的肿瘤，包括软脑膜转移癌，罕见的病，恶性肿瘤在软脑膜发起致命性的浸润，一般医生都预测这样的病人只剩下几个月的生命，而且神经很有可能迅速衰退。这件事对保罗打击很大。他没说什么，但作为神经外科医生，他当然很清楚自己即将面对什么。保罗当然早就接受了自己时日无多的事实，但神经衰退这个新的负担令他备感沮丧。他可能丧失活着的意义，完全失去自我，变成一个废人，光想想就让人痛苦万分。我们和保罗的肿瘤医生一起制定策略，列出了保罗的当务之急：尽量保持精神敏锐度，有多久算多久。我们参加了一个临床试验，咨询了一位神经肿瘤专家，还见了缓和医疗团队，讨论临终关怀的办法，尽量提高他最后时光的生活质量。我努力让自己坚强，但还是免不了心如刀割，想着他有多么痛苦，担心他最多只能活几个星期。和他十指紧扣时，我会幻想他的葬礼。那时候我都不知道，保罗只剩下几天时间了。
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.

保罗在这世上的最后一个星期六，我们是在舒适的客厅里度过的，家人都在。保罗坐在轮椅上，抱着卡迪。他父亲在旁边看顾。他母亲和我坐在不远处的沙发上。保罗给卡迪唱歌，在膝头轻轻摇晃着她。她咧嘴大笑，目光显然聚焦在爸爸鼻子上的输氧管上。我拒绝了所有家人以外的探望，保罗的世界变小了，但他告诉我：“我希望大家都知道，就算我不见他们，也是爱着他们的。我珍惜与他们的友谊，少喝一杯酒也不会改变什么。”那天他什么也没写。这本书的手稿也只完成了一部分。保罗也知道他不大可能写完了，精力体力不支，脑子不太清楚，也没时间了。
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.

为了给临床试验做准备，保罗把一直在吃的定向治疗的药给停了。这个药本来在控制癌症上就疗效甚微，但停药也有风险，可能导致癌症迅速扩散恶化。所以，保罗的肿瘤医生叫我每天都给他录像，让他做同样的事，观察他的语言或体态有没有出现缺陷。“四月是最残忍的月份，”——那个周六，保罗在客厅大声朗读，我在一旁录像，他选择了艾略特的《荒原》——“把回忆和欲望掺和在一起／又让春雨催促那些迟钝的根芽。”他还超额完成任务，把书背面向上放在膝头，坚持进行背诵。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.

“也就是他才做得出来！”他妈妈微笑着说。
“So like him!” his mother said, smiling.

第二天，周日，我们祈祷着能继续平安无事地度过周末。如果保罗感觉还行，我们就去教堂，然后带卡迪和堂哥堂姐们去山上公园里的婴儿秋千那边玩。我们会继续消化最近这些令人痛苦的消息，分担忧伤，珍惜在一起的时光。
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，时间加快了脚步。
But instead, time sped up.

周日清早，我摸了摸保罗的额头，发现烧得厉害，40℃。虽然他看起来好像挺舒服的，也没有其他新症状。几个小时内，我们就在急救室进进出出。保罗的父亲还有苏曼都来帮忙。医生开了抗生素预防肺炎（保罗的胸片上全是密密麻麻的肿瘤，有炎症可能也看不出来）之后，我们回了家，家人都等在那里。不过，这会不会不是肺炎，而是癌症迅速恶化的征兆呢？下午，保罗打了个盹，还算舒服，但病情显然很严重。我凝视着他睡觉的模样，突然哭了起来，于是轻轻走到客厅，发现他父亲也在流泪。我已经开始想念保罗了。
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，保罗的病情突然恶化。他坐在床边，呼吸很困难，真是让人心惊肉跳。我叫了救护车，这次，保罗是躺在轮床上进的急救室，他的父母紧紧跟在我们身后。保罗转头看着我，低语道：“也许这就是结束了。”
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.”

“我一直陪着你呢。”我说。
“I’m here with you,” I said.

医院的各位像往常一样热情地问候保罗，但观察了他的情况之后就迅速开始行动了。他们做了一些初步检查，用面罩盖住他的鼻子和嘴，用BiPAP呼吸机辅助他的呼吸。这种呼吸辅助系统能在他每次吸气时通过机械原理提供大量流通的空气，基本上就代劳了他的呼吸活动。BiPAP的确有助于呼吸机能的正常运转，但对病人来说也是不小的负担，噪音很大，威力很强，每一次呼吸都会把两瓣嘴唇吹得“相距甚远”，就像那些把头伸出车窗外的狗。我站在他身边，斜倚着轮床，保罗握着我的手。呼吸机发出稳定均衡的“呼——呼——”声。
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.

保罗血液中的二氧化碳含量高得吓人，这说明他难以承受目前的呼吸活动。验血结果表明，有些过量的二氧化碳已经累积了几天，甚至几个星期。这段时间他的病一直在持续恶化，肺部也在逐渐衰竭。他的大脑慢慢适应了高于普通标准的二氧化碳含量，所以人还算清醒。他能够观察各种症状和现象。作为医生，他明白这些检查结果预示着糟糕的结局。我也明白。我跟在他身后，医护人员推着他走向重症监护室。从前，他的很多病人在神经手术前后都在这样的病房里痛苦挣扎过。现在，他的家人都聚集在床边，坐在塑料椅上。“我会需要插管吗？”到了病房，他在BiPAP呼吸的间隙问我，“我应该被插管吗？”
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，保罗都在讨论这个问题，和他的医生、家人进行了一系列谈话，最后变成我俩单独的对话。午夜时分，危重医学的主治医生，也是保罗长期以来的良师益友，进了病房，和家人讨论治疗方案。他说，BiPAP只是暂时的缓兵之计。唯一还能再试试的就是给保罗插管——给他上那种大型的呼吸机。
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.