雙語(yǔ)·當(dāng)呼吸化為空氣 這一周的大部分時(shí)間 我都臥床不起

這一周的大部分時(shí)間，我都臥床不起。癌癥在進(jìn)一步惡化，我明顯更虛弱了。我的身體，與其本身自帶的特性，發(fā)生了根本的變化。上床休息或者下床上廁所已經(jīng)不是一個(gè)自然而然的皮質(zhì)下運(yùn)動(dòng)程序，需要費(fèi)大力氣，還要事前做好計(jì)劃準(zhǔn)備。理療師們列了一張單子，要準(zhǔn)備些東西，好讓我出院回家也住得舒服：一根手杖、特制的馬桶座圈、休息的時(shí)候墊在腿部的泡沫板；還開了一堆新的止痛藥。我邁著蹣跚的步子走出醫(yī)院的時(shí)候，心里真是想不通，僅僅六天前，我還在手術(shù)室一站就是將近三十六個(gè)小時(shí)，難道一周的時(shí)間，就變得這么虛弱了？是啊，某種程度上說(shuō)是這樣。不過(guò)，那三十六個(gè)小時(shí)，我也是用了些小辦法，同時(shí)在有別的醫(yī)生合作的情況下才挺過(guò)來(lái)的，而且，即便如此，手術(shù)過(guò)程中我也感到身體劇烈疼痛。現(xiàn)在，CT片和檢測(cè)結(jié)果都顯示了，不僅是癌癥，而且是擴(kuò)散到全身的癌癥，病入膏肓，死之將至。難道因?yàn)樽约旱目謶直蛔C實(shí)了，我就不再堅(jiān)持一個(gè)醫(yī)療工作者對(duì)工作、對(duì)病人、對(duì)神經(jīng)外科、對(duì)完美的職責(zé)和追求，不再硬撐了嗎？我心里給出了肯定的答案，這樣一來(lái)就有個(gè)悖論：我就像個(gè)正接近終點(diǎn)線，卻轟然倒地的長(zhǎng)跑運(yùn)動(dòng)員。照顧病患的責(zé)任再也驅(qū)動(dòng)不了我前進(jìn)，因?yàn)槲易约阂呀?jīng)成了個(gè)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.

通常遇到情況特殊的病人時(shí)，我會(huì)去咨詢相關(guān)專家，也會(huì)去讀相關(guān)資料。眼下的情況似乎也沒(méi)什么區(qū)別。我開始查閱化療資料，看到了種類繁多的藥劑，還有更為現(xiàn)代和先進(jìn)的療法，主要針對(duì)具體的病變。我腦子里冒出數(shù)不清的問(wèn)題，根本無(wú)法進(jìn)行有效的直接研究。（亞歷山大·蒲柏說(shuō)過(guò)：“一知半解最危險(xiǎn)；飲則深透暢飲，否則嘗不到知識(shí)的甘泉。”）由于沒(méi)有相關(guān)的醫(yī)療經(jīng)驗(yàn)，我在這樣一個(gè)全新的信息世界里，真是找不著北，也沒(méi)法在卡普蘭-邁耶曲線上給自己定位。我只好有所期待地等著和醫(yī)生見面。
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.

不過(guò)，做得最多的事，還是休息。
But mostly, I rested.

我坐在那兒，盯著一張露西和我的合影出神。那是醫(yī)學(xué)院時(shí)期照的，我們?cè)谔瑁陂_懷大笑。真是太憂傷了，照片里的兩個(gè)人，正一起計(jì)劃著新生活，對(duì)以后的苦難毫不知情，我也從未懷疑過(guò)自己的身體會(huì)出什么問(wèn)題。我的朋友勞里在遭遇車禍去世時(shí)，也是有未婚夫的——這是不是比我眼前的情況更殘酷？
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?

我從一個(gè)醫(yī)生，一下子變成了病人，整個(gè)過(guò)程真是措手不及，慌張忙亂，我的家人也被卷入其中。我們?cè)谝患宜幍觊_了賬戶，定期把藥郵寄到家；訂購(gòu)了一個(gè)床欄，還買了一個(gè)根據(jù)人體工程學(xué)設(shè)計(jì)的床墊，幫我緩解劇烈的背痛。我們本來(lái)有個(gè)理財(cái)計(jì)劃，幾天前還充滿信心地覺(jué)得，未來(lái)一年我的收入會(huì)翻個(gè)六倍。而現(xiàn)在，這個(gè)計(jì)劃風(fēng)雨飄搖。好像必須要運(yùn)用新的理財(cái)工具來(lái)給露西的未來(lái)提供保障了。我爸說(shuō)，要是真的改變計(jì)劃，那就是在向癌癥投降。他覺(jué)得我能戰(zhàn)勝癌癥，會(huì)奇跡般地痊愈。唉，這話我聽病人家屬說(shuō)過(guò)多少次了？每到這個(gè)時(shí)候，我都不知道該跟他們說(shuō)什么。現(xiàn)在，我也不知道該跟自己的父親說(shuō)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.

難道還能反著說(shuō)嗎？
What was the alternate story?

兩天后，露西和我去診室見了艾瑪。爸媽在候診室坐立不安地等著。助理醫(yī)護(hù)人員檢查了我的生命體征。艾瑪和搭檔的護(hù)理師分秒不差地到了。艾瑪拉了把椅子在我身邊坐下，和我面對(duì)面，我們注視著彼此的眼睛。
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.

“又見面了，”她說(shuō)，“這位是艾麗克西斯，我的得力助手。”她指了指坐在電腦前做記錄的護(hù)理師，“我知道我們要談很多問(wèn)題，但我要先問(wèn)問(wèn)，你怎么樣？”
“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?”

“大體上來(lái)說(shuō)，還行?！蔽艺f(shuō)，“反正嘛，‘度假’挺開心的。你怎么樣？”
“Okay, all things considered,” I said. “Enjoying my ‘vacation,’ I guess. How are you?”

“哦，我很好?！彼行┻t疑。一般來(lái)說(shuō)病人是不會(huì)回問(wèn)醫(yī)生這個(gè)問(wèn)題的，但艾瑪也是我的同事啊?！斑@周我負(fù)責(zé)住院部，你也知道是啥樣的。”她笑了。露西和我當(dāng)然完全了解。門診的醫(yī)生會(huì)定期去住院部輪班，本來(lái)每天都忙得焦頭爛額了，這樣一來(lái)工作時(shí)間又會(huì)延長(zhǎng)好幾個(gè)小時(shí)。
“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.

我們又互相插科打諢一番，然后自然而然地談起肺癌研究的情況。艾瑪說(shuō)，有兩條路可選。傳統(tǒng)的方法就是化療，主要是針對(duì)快速分裂的細(xì)胞：首當(dāng)其沖的自然是癌細(xì)胞，但也會(huì)影響骨髓、毛囊和腸道等多處的細(xì)胞。艾瑪回顧了各種數(shù)據(jù)和不同的方案，也是把我當(dāng)作一個(gè)醫(yī)生在進(jìn)行解釋，但對(duì)卡普蘭-邁耶生存曲線還是只字不提。不過(guò)嘛，還有更新的治療方法，專門針對(duì)癌癥本身的分子缺陷。我聽說(shuō)過(guò)有關(guān)這些療法的一些傳言，也為取得的進(jìn)展驚訝不已。據(jù)說(shuō)這一直是攻克癌癥領(lǐng)域的一座圣杯，似乎讓“某些”病人得以長(zhǎng)長(zhǎng)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.

“你的大部分檢查結(jié)果都拿到了，”艾瑪說(shuō)，“你的PI3K有突變，不過(guò)現(xiàn)在還說(shuō)不準(zhǔn)到底意味著什么。你這樣的病人最常見的就是EGFR突變，但檢查結(jié)果還沒(méi)拿到。我猜你應(yīng)該是有突變的，要是真的如我所說(shuō)，那就不用化療，可以吃一種叫特羅凱的藥。明天星期五，結(jié)果就應(yīng)該出來(lái)了。但是你病得這么重，我已經(jīng)幫你安排了下周一開始化療，免得檢查結(jié)果出來(lái)是陰性的?！?br>“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.”

我立刻對(duì)她產(chǎn)生了一種親近感。我做神經(jīng)外科手術(shù)也是如此，隨時(shí)都有方案A、B、C，以防萬(wàn)一。
I immediately felt a kinship. This was exactly how I approached neurosurgery: have a plan A, B, and C at all times.

“如果化療，那我們主要是決定用卡鉑還是用順鉑。針對(duì)個(gè)體的研究來(lái)看，硬碰硬的話，卡鉑的耐受性是比較好的。順鉑的治療效果可能更好，但毒性要高很多，特別是對(duì)神經(jīng)的損傷很大。不過(guò)這方面的各種數(shù)據(jù)都有點(diǎn)舊了，也沒(méi)法直接和我們的現(xiàn)代化療法做對(duì)比。你有什么想法嗎？”
“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?”

“我不太在意以后還能不能做手術(shù)?！蔽艺f(shuō)，“我一輩子還能做很多事情。如果雙手不行了，我可以找其他的工作，或者就不工作，諸如此類。”
“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.”

她稍稍猶豫了一下：“那我問(wèn)你：做手術(shù)對(duì)你來(lái)說(shuō)重要嗎？是你想做的事情嗎？”
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時(shí)間都在為這個(gè)做準(zhǔn)備。”
“Well, yes, I’ve spent almost a third of my life preparing for it.”

“好。那我就建議還是用卡鉑。我想不大會(huì)改變生存的概率，但是會(huì)很大程度上改變你的生活質(zhì)量。你還有什么問(wèn)題嗎？”
“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?”