双语·当呼吸化为空气 这一周的大部分时间 我都卧床不起

这一周的大部分时间，我都卧床不起。癌症在进一步恶化，我明显更虚弱了。我的身体，与其本身自带的特性，发生了根本的变化。上床休息或者下床上厕所已经不是一个自然而然的皮质下运动程序，需要费大力气，还要事前做好计划准备。理疗师们列了一张单子，要准备些东西，好让我出院回家也住得舒服：一根手杖、特制的马桶座圈、休息的时候垫在腿部的泡沫板；还开了一堆新的止痛药。我迈着蹒跚的步子走出医院的时候，心里真是想不通，仅仅六天前，我还在手术室一站就是将近三十六个小时，难道一周的时间，就变得这么虚弱了？是啊，某种程度上说是这样。不过，那三十六个小时，我也是用了些小办法，同时在有别的医生合作的情况下才挺过来的，而且，即便如此，手术过程中我也感到身体剧烈疼痛。现在，CT片和检测结果都显示了，不仅是癌症，而且是扩散到全身的癌症，病入膏肓，死之将至。难道因为自己的恐惧被证实了，我就不再坚持一个医疗工作者对工作、对病人、对神经外科、对完美的职责和追求，不再硬撑了吗？我心里给出了肯定的答案，这样一来就有个悖论：我就像个正接近终点线，却轰然倒地的长跑运动员。照顾病患的责任再也驱动不了我前进，因为我自己已经成了个病人。
Having spent the better part of the week bedridden, with the cancer progressing, I had grown noticeably weaker. My body, and the identity tied to it, had radically changed. No longer was getting in and out of bed to go to the bathroom an automated subcortical motor program; it took effort and planning. The physical thera-pists left a list of items to ease my transition home: a cane, a modified toilet seat, foam blocks for leg support while resting. A bevy of new pain medications was prescribed. As I hobbled out of the hospital, I wondered how, just six days ago, I had spent nearly thirty-six straight hours in the operating room. Had I grown that much sicker in a week? Yes, in part. But I had also used a number of tricks and help from co-surgeons to get through those thirty-six hours—and, even so, I had suffered excruciating pain. Had the confirmation of my fears—in the CT scan, in the lab results, both showing not merely cancer but a body overwhelmed, nearing death—released me from the duty to serve, from my duty to patients, to neurosurgery, to the pursuit of goodness? Yes, I thought, and therein was the paradox: like a runner crossing the finish line only to collapse, without that duty to care for the ill pushing me forward, I became an invalid.

通常遇到情况特殊的病人时，我会去咨询相关专家，也会去读相关资料。眼下的情况似乎也没什么区别。我开始查阅化疗资料，看到了种类繁多的药剂，还有更为现代和先进的疗法，主要针对具体的病变。我脑子里冒出数不清的问题，根本无法进行有效的直接研究。（亚历山大·蒲柏说过：“一知半解最危险；饮则深透畅饮，否则尝不到知识的甘泉。”）由于没有相关的医疗经验，我在这样一个全新的信息世界里，真是找不着北，也没法在卡普兰-迈耶曲线上给自己定位。我只好有所期待地等着和医生见面。
Usually when I had a patient with a strange condition, I consulted the relevant specialist and spent time reading about it. This seemed no different, but as I started reading about chemo, which included a whole variety of agents, and a raft of more modern novel treatments that targeted specific mutations, the sheer number of questions I had prevented any useful directed study. (Alexander Pope: “A little learning is a dangerous thing; / Drink deep, or taste not the Pierian spring.”) Without appropriate medical experience, I couldn’t place myself in this new world of information, couldn’t find my spot on the Kaplan-Meier curve. I waited, expectantly, for my clinic visit.

不过，做得最多的事，还是休息。
But mostly, I rested.

我坐在那儿，盯着一张露西和我的合影出神。那是医学院时期照的，我们在跳舞，在开怀大笑。真是太忧伤了，照片里的两个人，正一起计划着新生活，对以后的苦难毫不知情，我也从未怀疑过自己的身体会出什么问题。我的朋友劳里在遭遇车祸去世时，也是有未婚夫的——这是不是比我眼前的情况更残酷？
I sat, staring at a photo of Lucy and me from medical school, dancing and laughing; it was so sad, those two, planning a life together, unaware, never suspecting their own fragility. My friend Laurie had had a fiancé when she’d died in a car accident—was this any crueler?

我从一个医生，一下子变成了病人，整个过程真是措手不及，慌张忙乱，我的家人也被卷入其中。我们在一家药店开了账户，定期把药邮寄到家；订购了一个床栏，还买了一个根据人体工程学设计的床垫，帮我缓解剧烈的背痛。我们本来有个理财计划，几天前还充满信心地觉得，未来一年我的收入会翻个六倍。而现在，这个计划风雨飘摇。好像必须要运用新的理财工具来给露西的未来提供保障了。我爸说，要是真的改变计划，那就是在向癌症投降。他觉得我能战胜癌症，会奇迹般地痊愈。唉，这话我听病人家属说过多少次了？每到这个时候，我都不知道该跟他们说什么。现在，我也不知道该跟自己的父亲说什么。
My family engaged in a flurry of activity to transform my life from that of a doctor to that of a patient. We set up an account with a mailorder pharmacy, ordered a bed rail, and bought an ergonomic mattress to help alleviate the searing back pain. Our financial plan, which a few days before had banked on my income increasing sixfold in the next year, now looked precarious, and a variety of new financial instruments seemed necessary to protect Lucy. My father declared that these modifications were capitulations to the disease: I was going to beat this thing, I would somehow be cured. How often had I heard a patient’s family member make similar declarations? I never knew what to say to them then, and I didn’t know what to say to my father now.

难道还能反着说吗？
What was the alternate story?

两天后，露西和我去诊室见了艾玛。爸妈在候诊室坐立不安地等着。助理医护人员检查了我的生命体征。艾玛和搭档的护理师分秒不差地到了。艾玛拉了把椅子在我身边坐下，和我面对面，我们注视着彼此的眼睛。
Two days later, Lucy and I met Emma in the clinic. My parents hovered in the waiting room. The medical assistant took my vitals. Emma and her nurse practitioner were remarkably punctual, and Emma pulled up a chair in front of me, to talk face-to-face, eye-toeye.

“又见面了，”她说，“这位是艾丽克西斯，我的得力助手。”她指了指坐在电脑前做记录的护理师，“我知道我们要谈很多问题，但我要先问问，你怎么样？”
“Hello again,” she said. “This is Alexis, my right hand.” She gestured to the NP, who sat at the computer taking notes. “I know there’s a lot to discuss, but first: How are you doing?”

“大体上来说，还行。”我说，“反正嘛，‘度假’挺开心的。你怎么样？”
“Okay, all things considered,” I said. “Enjoying my ‘vacation,’ I guess. How are you?”

“哦，我很好。”她有些迟疑。一般来说病人是不会回问医生这个问题的，但艾玛也是我的同事啊。“这周我负责住院部，你也知道是啥样的。”她笑了。露西和我当然完全了解。门诊的医生会定期去住院部轮班，本来每天都忙得焦头烂额了，这样一来工作时间又会延长好几个小时。
“Oh, I’m okay.” She paused—patients don’t typically ask how their doctors are doing, but Emma was also a colleague. “I’m running the inpatient service this week, so you know how that is.” She smiled. Lucy and I did know. Outpatient specialists rotated on the inpatient service periodically, adding several hours of work in an already jampacked day.

我们又互相插科打诨一番，然后自然而然地谈起肺癌研究的情况。艾玛说，有两条路可选。传统的方法就是化疗，主要是针对快速分裂的细胞：首当其冲的自然是癌细胞，但也会影响骨髓、毛囊和肠道等多处的细胞。艾玛回顾了各种数据和不同的方案，也是把我当作一个医生在进行解释，但对卡普兰-迈耶生存曲线还是只字不提。不过嘛，还有更新的治疗方法，专门针对癌症本身的分子缺陷。我听说过有关这些疗法的一些传言，也为取得的进展惊讶不已。据说这一直是攻克癌症领域的一座圣杯，似乎让“某些”病人得以长长久久地活下去。
After more pleasantries, we settled into a comfortable discussion on the state of lung cancer research. There were two paths forward, she said. The traditional method was chemotherapy, which generically targeted rapidly dividing cells—primarily cancer cells but also cells in your bone marrow, hair follicles, intestines, and so forth. Emma reviewed the data and options, lecturing as if to another doctor—but again with the exception of any mention of Kaplan-Meier survival curves. Newer therapies had been developed, however, targeting specific molecular defects in the cancer itself. I had heard rumors of such efforts—it had long been a holy grail in cancer work—and was surprised to learn how much progress had been made. These treatments, it seemed, had led to long-term survival in “some”patients.

“你的大部分检查结果都拿到了，”艾玛说，“你的PI3K有突变，不过现在还说不准到底意味着什么。你这样的病人最常见的就是EGFR突变，但检查结果还没拿到。我猜你应该是有突变的，要是真的如我所说，那就不用化疗，可以吃一种叫特罗凯的药。明天星期五，结果就应该出来了。但是你病得这么重，我已经帮你安排了下周一开始化疗，免得检查结果出来是阴性的。”
“Most of your tests are back,” Emma said. “You have a PI3K mutation, but no one’s sure what that means yet. The test for the most common mutation in patients like you, EGFR, is still pending. I’m betting that’s what you have, and if so, there’s a pill called Tarceva that you can take instead of chemotherapy. That result should be back tomorrow, Friday, but you’re sick enough that I’ve set you up for chemo starting Monday in case the EGFR test is negative.”

我立刻对她产生了一种亲近感。我做神经外科手术也是如此，随时都有方案A、B、C，以防万一。
I immediately felt a kinship. This was exactly how I approached neurosurgery: have a plan A, B, and C at all times.

“如果化疗，那我们主要是决定用卡铂还是用顺铂。针对个体的研究来看，硬碰硬的话，卡铂的耐受性是比较好的。顺铂的治疗效果可能更好，但毒性要高很多，特别是对神经的损伤很大。不过这方面的各种数据都有点旧了，也没法直接和我们的现代化疗法做对比。你有什么想法吗？”
“With chemo, our main decision will be carboplatin versus cisplatin. In isolated studies, head-to-head, carboplatin is better tolerated. Cisplatin has potentially better results but much worse toxicity, especially for the nerves, though all the data is old, and there’s no direct comparison to our modern chemo regimens. Do you have any thoughts?”

“我不太在意以后还能不能做手术。”我说，“我一辈子还能做很多事情。如果双手不行了，我可以找其他的工作，或者就不工作，诸如此类。”
“I’m less worried about protecting my hands for surgery,” I said.“There’s a lot I can do with my life. If I lose my hands, I can find another job, or not work, or something.”

她稍稍犹豫了一下：“那我问你：做手术对你来说重要吗？是你想做的事情吗？”
She paused. “Let me ask this: Is surgery important to you? Is it something you want to do?”

“嗯，是啊。我人生有三分之一的时间都在为这个做准备。”
“Well, yes, I’ve spent almost a third of my life preparing for it.”

“好。那我就建议还是用卡铂。我想不大会改变生存的概率，但是会很大程度上改变你的生活质量。你还有什么问题吗？”
“Okay, then I’m going to suggest we stick with the carboplatin. I don’t think it will change survival, and I do think it could dramatically change your quality of life. Do you have any other questions?”