一位患癌醫(yī)生的自白

文/Paul+Kalanithi+譯/辛獻(xiàn)云

Time is shortening. But every day that I challenge this cancer and survive is a victory for me.

—Ingrid Bergman （英格麗·褒曼，好萊塢演員）

As soon as the CT scan was done， I began reviewing the images. The diagnosis was immediate： masses matting1） the lungs and deforming the spine2）. Cancer. In my neurosurgical training， I had reviewed hundreds of scans for fellow doctors to see if surgery offered any hope. Id scribble3） in the chart “Widely metastatic4） disease—no role for surgery，” and move on. But this scan was different： It was my own.

I have sat with countless patients and families to discuss grim prognoses5）： Its one of the most important jobs physicians have. Its easier when the patient is 94， in the last stages of dementia6） and has a severe brain bleed. For young people like me—I am 36—given a diagnosis of cancer， there arent many words. My standard pieces include “its a marathon， not a sprint7）， so get your daily rest” and “illness can drive a family apart or bring it together—be aware of each others needs and find extra support.”

I learned a few basic rules. Be honest about the prognosis but always leave some room for hope. Be vague but accurate： “days to a few weeks，” “weeks to a few months，” “months to a few years，” “a few years to a decade or more.” We never cite detailed statistics， and usually advise against Googling survival numbers， assuming the average patient doesnt possess a nuanced understanding of statistics.

People react differently to hearing “Procedure X has a 70 percent chance of survival” and “Procedure Y has a 30 percent chance of death.” Phrased that way， people flock to Procedure X， even though the numbers are the same. When a close friend developed pancreatic8） cancer， I became the medical maven9） to a group of people who were sophisticated statisticians. I still dissuaded10） them from looking up the statistics， saying five-year survival curves are at least five years out of date. Somehow I felt that the numbers alone were too dry， or that a physicians daily experience with illness was needed for context. Mostly， I felt that impulse： Keep a measure of hope.

These survival curves， called Kaplan-Meier curves11）， are one way we measure progress in cancer treatment， plotting the number of patients surviving over time. For some diseases， the line looks like an airplane gently beginning its descent； for others， like a dive bomber12）. Physicians think a lot about these curves， their shape， and what they mean. In brain-cancer research， for example， while the numbers for average survival time havent changed much， theres an increasingly long tail on the curve， indicating a few patients are living for years. The problem is that you cant tell an individual patient where she is on the curve. Its impossible， irresponsible even， to be more precise than you can be accurate.

One would think， then， that when my oncologist13） sat by my bedside to meet me， I would not immediately demand information on survival statistics. But now that I had traversed14） the line from doctor to patient， I had the same yearning for the numbers all patients ask for. I hoped she would see me as someone who both understood statistics and the medical reality of illness， that she would give me certainty， the straight dope15）. I could take it. She flatly refused： “No. Absolutely not.” She knew very well I could—and did—look up all the research on the topic. But lung cancer wasnt my specialty， and she was a world expert. At each appointment， a wrestling match began， and she always avoided being pinned down to any sort of number.

Now， instead of wondering why some patients persist in asking statistics questions， I began to wonder why physicians obfuscate16） when they have so much knowledge and experience. Initially when I saw my CT scan， I figured I had only a few months to live. The scan looked bad. I looked bad. Id lost 30 pounds， developed excruciating17） back pain and felt more fatigued every day. My tests revealed severely low protein levels and low blood counts consistent with the body overwhelmed， failing in its basic drive to sustain itself.

For a few months， Id suspected I had cancer. I had seen a lot of young patients with cancer. So I wasnt taken aback18）. In fact， there was a certain relief. The next steps were clear： Prepare to die. Cry. Tell my wife that she should remarry， and refinance the mortgage. Write overdue letters to dear friends. Yes， there were lots of things I had meant to do in life， but sometimes this happens： Nothing could be more obvious when your days work includes treating head trauma and brain cancer.

But on my first visit with my oncologist， she mentioned my going back to work someday. Wasnt I a ghost？ No. But then how long did I have？ Silence.

Of course， she could not stop my intense reading. Poring over studies， I kept trying to find the one that would tell me when my number would be up19）. The large general studies said that between 70 and 80 percent of lung cancer patients would die within two years. They did not allow for much hope. But then again， most of those patients were older and heavy smokers. Where was the study of nonsmoking 36-year-old neurosurgeons？ Maybe my youth and health mattered？ Or maybe my disease was found so late， had spread so far， and I was already so far gone that I was worse off than those 65-year-old smokers.

Many friends and family members provided anecdotes along the lines of20） my-friends-friends-moms-friend or my-uncles-barbers-sons-tennis-partner has this same kind of lung cancer and has been living for 10 years. Initially I wondered if all the stories referred to the same person， connected through the proverbial21） six degrees22）. I disregarded them as wishful thinking， baseless delusion23）. Eventually， though， enough of those stories seeped in through the cracks of my studied realism.

And then my health began to improve， thanks to a pill that targets a specific genetic mutation24） tied to my cancer. I began to walk without a cane and to say things like， “Well， its pretty unlikely that Ill be lucky enough to live for a decade， but its possible.” A tiny drop of hope.

In a way， though， the certainty of death was easier than this uncertain life. Didnt those in purgatory25） prefer to go to hell， and just be done with it？ Was I supposed to be making funeral arrangements？ Devoting myself to my wife， my parents， my brothers， my friends， my adorable niece？ Writing the book I had always wanted to write？ Or was I supposed to go back to negotiating my multiyear job offers？

The path forward would seem obvious， if only I knew how many months or years I had left. Tell me three months， Id just spend time with family. Tell me one year， Id have a plan （write that book）. Give me 10 years， Id get back to treating diseases. The pedestrian26） truth that you live one day at a time didnt help： What was I supposed to do with that day？ My oncologist would say only： “I cant tell you a time. Youve got to find what matters most to you.”

I began to realize that coming face to face with my own mortality， in a sense， had changed both nothing and everything. Before my cancer was diagnosed， I knew that someday I would die， but I didnt know when. After the diagnosis， I knew that someday I would die， but I didnt know when. But now I knew it acutely. The problem wasnt really a scientific one. The fact of death is unsettling. Yet there is no other way to live.

The reason doctors dont give patients specific prognoses is not merely because they cannot. Certainly， if a patients expectations are way out of the bounds of probability—someone expecting to live to 130， or someone thinking his benign skin spots are signs of impending death—doctors are entrusted to bring that persons expectations into the realm of reasonable possibility.

But the range of what is reasonably possible is just so wide. Based on todays therapies， I might die within two years， or I might make it to 10. If you add in the uncertainty based on new therapies available in two or three years， that range may be completely different. Faced with mortality， scientific knowledge can provide only an ounce of certainty： Yes， you will die. But one wants a full pound of certainty， and that is not on offer.

What patients seek is not scientific knowledge doctors hide， but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench27） a thirst with salty water. The angst28） of facing mortality has no remedy in probability.

I remember the moment when my overwhelming uneasiness yielded. Seven words from Samuel Beckett29）， a writer Ive not even read that well， learned long ago as an undergraduate， began to repeat in my head， and the seemingly impassable30） sea of uncertainty parted： “I cant go on. Ill go on.” I took a step forward， repeating the phrase over and over： “I cant go on. Ill go on.” And then， at some point， I was through.

I am now almost exactly eight months from my diagnosis. My strength has recovered substantially. In treatment， the cancer is retreating. I have gradually returned to work. Im knocking the dust off scientific manuscripts. Im writing more， seeing more， feeling more. Every morning at 5：30， as the alarm clock goes off， and my dead body awakes， my wife asleep next to me， I think again to myself： “I cant go on.” And a minute later， I am in my scrubs， heading to the operating room， alive： “Ill go on.”

CT掃描一完成，我就開(kāi)始審視影像。診斷結(jié)果立即得出：大量物質(zhì)正積聚在肺部，使脊椎變形。是癌癥！在我所接受的神經(jīng)外科訓(xùn)練中，我已經(jīng)為同事查看過(guò)數(shù)百個(gè)掃描結(jié)果，以確定手術(shù)是否能帶來(lái)一絲希望。我常常會(huì)在表格里潦草地寫(xiě)下“疾病已廣泛轉(zhuǎn)移——手術(shù)無(wú)作用”，然后該干嗎干嗎去。但這次掃描不一樣：這是我自己的圖像。

我曾經(jīng)同無(wú)數(shù)的病人及家屬坐在一起討論過(guò)嚴(yán)峻的預(yù)后情況：這是醫(yī)生們所要做的最重要的工作之一。如果病人已94歲高齡，處于老年癡呆癥晚期并伴有嚴(yán)重的腦出血，事情就比較簡(jiǎn)單了。但對(duì)于像我這樣的年輕人——我36歲——被診斷為癌癥，真是沒(méi)有太多可以說(shuō)的。我的標(biāo)準(zhǔn)回應(yīng)包括“這是一場(chǎng)馬拉松，而非短跑比賽，所以每天都要休息”，以及“疾病可以拆散一個(gè)家庭，也可以使一個(gè)家庭更為齊心協(xié)力——要留意彼此的需求，尋找額外的支持”。

我掌握了幾條基本的規(guī)則。對(duì)預(yù)后要實(shí)話實(shí)說(shuō)，但要始終留有希望的余地?？梢哉f(shuō)得含糊一些，但一定要準(zhǔn)確：“從幾天到幾周”，“從幾周到幾個(gè)月”，“從幾個(gè)月到幾年”，“從幾年到十年或更久”。我們從不引用詳細(xì)的統(tǒng)計(jì)數(shù)據(jù)，通常也不建議在谷歌上搜索存活數(shù)據(jù)，因?yàn)槲覀冋J(rèn)為普通患者對(duì)統(tǒng)計(jì)數(shù)據(jù)不具備細(xì)致入微的理解力。

如果告訴病人“采用X流程有70%的幾率存活”，“采用Y流程有30%的幾率死亡”，那么病人的反應(yīng)是不同的。聽(tīng)到這樣的話，人們會(huì)一窩蜂地選擇X流程，即使兩者包含的數(shù)據(jù)是相同的。有一次，一個(gè)好朋友得了胰腺癌，在一群動(dòng)不動(dòng)就拿統(tǒng)計(jì)數(shù)據(jù)說(shuō)事的人面前，我只好擔(dān)負(fù)起醫(yī)學(xué)專家的角色。我仍然勸他們不要查看統(tǒng)計(jì)數(shù)據(jù)，告訴他們五年存活曲線至少已過(guò)時(shí)五年。不知為什么，我覺(jué)得僅僅拿數(shù)字說(shuō)事太過(guò)乏味，覺(jué)得還需要參考醫(yī)生處理疾病的日常經(jīng)驗(yàn)才行。多數(shù)時(shí)候，我感到有一種沖動(dòng)，那就是保持一定程度的希望。

這種存活曲線叫做卡普蘭-邁耶曲線，是我們?cè)u(píng)估癌癥治療進(jìn)展的一種方式，繪制的是在一定時(shí)間內(nèi)患者的存活數(shù)量。對(duì)某些疾病而言，該曲線看上去就像一架緩緩降落的飛機(jī)；而對(duì)另一些疾病而言，它就像是一架俯沖直下的轟炸機(jī)。醫(yī)生們會(huì)對(duì)這些曲線、曲線形狀及其所代表的意義進(jìn)行大量思考。譬如，在腦腫瘤研究中，雖然達(dá)到平均存活時(shí)間的人數(shù)并沒(méi)有發(fā)生多大變化，但在曲線上有一條越來(lái)越長(zhǎng)的尾巴，表明一些患者會(huì)存活數(shù)年之久。問(wèn)題是，你無(wú)法告訴某一特定的患者她在這條曲線上的位置。你只能盡力地做到準(zhǔn)確，而要做到更加精確是不可能的，甚至是不負(fù)責(zé)任的。

那么，有人也許會(huì)想，當(dāng)腫瘤醫(yī)師坐在我的床邊為我診病時(shí)，我應(yīng)該不會(huì)立刻詢問(wèn)她關(guān)于存活數(shù)據(jù)的信息。但既然我已經(jīng)從醫(yī)生變成了患者，我也和所有病人一樣渴望了解存活信息。我希望她把我看成一個(gè)既懂得統(tǒng)計(jì)數(shù)據(jù)又懂得疾病醫(yī)理的人，希望她可以告訴我確定的事實(shí)，最直接的內(nèi)幕消息。我還是能接受的。但她一口回絕了：“不行，絕對(duì)不行?！彼浅Ａ私馕铱赡軙?huì)查閱關(guān)于這一課題的所有研究——事實(shí)上我也確實(shí)查閱了。但肺癌不是我的專長(zhǎng)，而她則是一位世界級(jí)專家。每一次約見(jiàn)都是一場(chǎng)較量，而她總是避免明確吐露任何數(shù)字。

如今，我已不再思考為什么有的患者非要詢問(wèn)統(tǒng)計(jì)數(shù)據(jù)的問(wèn)題，相反，我開(kāi)始思考為什么醫(yī)生擁有那么豐富的學(xué)識(shí)和經(jīng)驗(yàn)卻還是含糊其辭。最初，當(dāng)我看到自己的CT掃描圖像時(shí)，我想我只有幾個(gè)月可活了。圖像看起來(lái)很糟。我看起來(lái)也很糟。我體重減了30磅，背部疼得像受刑一樣，一天比一天感到疲憊。檢查結(jié)果表明，我的蛋白質(zhì)水平嚴(yán)重低下，血球計(jì)數(shù)減少，這同我不堪折磨的身體狀況是一致的，它已失去了自我維護(hù)的基本動(dòng)力。

數(shù)月以來(lái)，我一直懷疑我得了癌癥。我見(jiàn)過(guò)太多年輕的癌癥患者，所以我并不感到震驚。事實(shí)上，我反而感到某種解脫。接下來(lái)要做的事情很明確：等死。痛哭。告訴我妻子她應(yīng)該再婚，還要再為房貸籌備資金。給好朋友們寫(xiě)早就該寫(xiě)的信件。是的，生活中我想做而未做的事情太多了，但有時(shí)這無(wú)法避免。當(dāng)你每天要做的事情包括治療顱腦損傷和腦腫瘤時(shí)，這一點(diǎn)就再明顯不過(guò)了。

但當(dāng)我第一次去見(jiàn)我的腫瘤醫(yī)生時(shí)，她提到我某天可以回去工作。我不是已經(jīng)被判死刑了嗎？沒(méi)有。那么我還能活多長(zhǎng)時(shí)間呢？她沉默了。

當(dāng)然，她無(wú)法阻止我如饑似渴地查閱資料。在研讀資料時(shí)，我一直想找到一篇文章能夠告訴我還有多少日子可走。大多數(shù)一般性研究都說(shuō)70%～80%的肺癌患者會(huì)在兩年內(nèi)死亡。它們都沒(méi)有給我?guī)?lái)多少希望。但話又說(shuō)回來(lái)，那些患者絕大多數(shù)都比我年齡大，而且還是重度煙民。有沒(méi)有對(duì)不抽煙的36歲神經(jīng)外科醫(yī)生的研究資料呢？也許我的年輕和健康會(huì)發(fā)揮關(guān)鍵作用呢？又或許我的疾病發(fā)現(xiàn)得太晚，早已大面積擴(kuò)散，我已經(jīng)病入膏肓，遠(yuǎn)不如那些65歲的煙民呢？

很多朋友和家人會(huì)向我講述某某某的奇妙故事，諸如我朋友的朋友的媽媽的朋友或者我叔叔的理發(fā)師的兒子的網(wǎng)球伙伴得過(guò)同樣的肺癌，但已經(jīng)活了十年了。最初，我猜想所有這些故事指的都是同一個(gè)人吧，通過(guò)著名的“六度分隔理論”聯(lián)系到一起了。我對(duì)這些奇聞不屑一顧，認(rèn)為它們不過(guò)是一廂情愿的想法，是毫無(wú)根據(jù)的幻想。不過(guò)最后，這類傳聞還是有不少透過(guò)我注重研究、實(shí)事求是的觀念的“裂縫”滲透進(jìn)來(lái)。

接著，我的健康狀況開(kāi)始好轉(zhuǎn)，這多虧了一種藥物，它是與我癌癥相關(guān)的某種基因突變的克星。我已可以不用拐杖就能走路了，也開(kāi)始說(shuō)一些這樣的話：“要說(shuō)我有幸能再活十年，那不太可能，但也不是完全不可能?！苯K于還是有了一絲希望。

但是，從某種程度上說(shuō)，難逃一死的滋味總要?jiǎng)龠^(guò)生死未卜的煎熬。那些在煉獄中受盡煎熬的人不都寧愿趕緊下地獄了結(jié)一切嗎？我是不是應(yīng)該安排好自己的葬禮呢？是不是應(yīng)該把所有時(shí)間都留給我的妻子、父母、兄弟、朋友，還有我可愛(ài)的侄女呢？是不是應(yīng)該把那本我一直想寫(xiě)的書(shū)寫(xiě)出來(lái)呢？或者，我是不是應(yīng)該回去商談我多年的工作機(jī)會(huì)呢？

倘若我知道自己還有幾個(gè)月或者幾年的日子，前方的道路就會(huì)明確得多。若告訴我還有三個(gè)月，我將僅與家人共度時(shí)光。若告訴我還有一年，我將完成一個(gè)計(jì)劃（寫(xiě)那本書(shū)）。給我十年時(shí)間，我將會(huì)重操舊業(yè)，給病人看病。不要對(duì)我說(shuō)活一天算一天這種老掉牙的道理，沒(méi)用——這一天我該做什么？我的腫瘤醫(yī)生只會(huì)說(shuō)：“我無(wú)法告訴你確定的時(shí)間。你必須找到對(duì)你來(lái)說(shuō)最重要的事情?！?/p>

我開(kāi)始意識(shí)到，在某種意義上，直面自己的死亡這件事既可以說(shuō)什么都沒(méi)有改變，也可以說(shuō)改變了一切。在癌癥被確診前，我知道總有一天自己會(huì)死去，但不知道會(huì)是何時(shí)。確診之后，我還是知道某一天自己會(huì)死去，但還是不知何時(shí)。只不過(guò)現(xiàn)在我更加敏銳地知道這一點(diǎn)。這實(shí)際上不是一個(gè)科學(xué)問(wèn)題。死亡的存在令人心神不安。但人生就是如此，別無(wú)選擇。

醫(yī)生不給患者提供明確的預(yù)測(cè)，不僅僅是因?yàn)樗麄儫o(wú)法做到。當(dāng)然，如果一個(gè)患者的期待遠(yuǎn)遠(yuǎn)超出了可能性范圍——比如有人希望自己活到130歲，或者某人認(rèn)為他的良性皮膚斑是死亡將至的信號(hào)——醫(yī)生就有責(zé)任將此人的期待引入合理的可能性范圍。

但合理的可能性范圍非常寬泛。根據(jù)目前的治療手段，我可能兩年內(nèi)就會(huì)死去，也可能會(huì)撐到十年。如果再加上未來(lái)兩三年內(nèi)新的治療手段所帶來(lái)的不確定性，這個(gè)范圍又會(huì)完全不同。面對(duì)死亡的命運(yùn)，科學(xué)知識(shí)僅能提供微不足道的確定性：沒(méi)錯(cuò)，人必有一死。但人們總想獲得百分之百的確定性，而那是無(wú)法滿足的。

患者所尋求的并不是醫(yī)生隱瞞的科學(xué)知識(shí)，而是存在的真實(shí)性，這樣的真實(shí)性是每個(gè)人必須獨(dú)自去發(fā)現(xiàn)的。過(guò)于糾結(jié)于統(tǒng)計(jì)數(shù)據(jù)無(wú)異于飲鴆止渴。可能性并不是治療死亡恐懼癥的靈丹妙藥。

我還記得那幾乎將我壓垮的緊張煙消云散的那一刻。塞繆爾·貝克特——一個(gè)我甚至還沒(méi)有好好讀過(guò)的作家——說(shuō)過(guò)的兩句話救了我。這兩句話是我很久以前上大學(xué)時(shí)學(xué)過(guò)的，最近開(kāi)始縈繞在我腦海中：“我撐不下去了。我一定要撐下去?！蹦强此撇豢捎庠降牟淮_定之鴻溝頓時(shí)消失。我向前邁出一步，一遍又一遍地重復(fù)著這兩句話：“我撐不下去了。我一定要撐下去?！苯K于，在某一時(shí)刻，我闖過(guò)來(lái)了。

現(xiàn)在，距我確診為癌癥差不多有整整八個(gè)月時(shí)間了。我的體力已大體復(fù)原。通過(guò)治療，癌癥正在消退。我已漸漸開(kāi)始做一些工作。我彈掉科學(xué)手稿上的灰塵，堅(jiān)持多寫(xiě)、多看、多感受。每天早上五點(diǎn)半，當(dāng)鬧鐘響起，我沉睡的身體醒來(lái)，看著妻子在身旁安睡，我又一次心中暗想：“我撐不下去了?！钡环昼娭?，我又煥發(fā)了生命的活力，穿上外科手術(shù)服，朝著手術(shù)室走去：“我一定要撐下去！”

1. mat [m?t] vt. （使） 纏結(jié)，（使） 交織在一起

2. spine [spa?n] n. 脊柱，脊椎

3. scribble [?skr?b（?）l] vt. 潦草書(shū)寫(xiě)

4. metastatic [?met??st?t?k] adj. （癌細(xì)胞等）轉(zhuǎn)移性的

5. prognosis [pr?ɡ?n??s?s] n. [醫(yī)]預(yù)后（指根據(jù)癥狀對(duì)疾病后果的預(yù)測(cè)），其復(fù)數(shù)形式為prognoses。

6. dementia [d??men??] n. [醫(yī)]癡呆

7. sprint [spr?nt] n. 短（距離賽）跑

8. pancreatic [?p??kri??t?k] adj. [解]胰的

9. maven [?me?v?n] n.〈美口〉專家，內(nèi)行

10. dissuade [d??swe?d] vt. 勸……不要做某事，勸阻

11. Kaplan-Meier curve：[醫(yī)]卡普蘭-邁耶曲線，統(tǒng)計(jì)分析癌癥患者的存活時(shí)間的曲線

12. bomber [?b?m?（r）] n. 轟炸機(jī)

13. oncologist [?n?k?l?d?ist] n. 腫瘤學(xué)家

14. traverse [tr??v??（r）s] vt. 沿……來(lái)回移動(dòng)；在……來(lái)回走動(dòng)

15. dope [d??p] n. （內(nèi)幕）消息；密報(bào)

16. obfuscate [??bf??ske?t] vi. （尤指故意地） 模糊處理

17. excruciating [?k?skru??i?e?t??] adj. 受折磨的；極痛苦的

18. take aback：（常用被動(dòng)語(yǔ)態(tài)）使吃驚；使困惑

19. sb.s number is up：某人死期將到（幽默用法）

20. along the lines of：類似于，與……近似

21. proverbial [pr??v??（r）bi?l] adj. 出名的，眾所周知的

22. six degrees：六度分隔理論（Six Degrees of Separation），又稱為“小世界效應(yīng)”，指的是世界上所有互不相識(shí)的人只需要通過(guò)很少的中間人就能建立起聯(lián)系。

23. delusion [d??lu??（?）n] n. 錯(cuò)覺(jué)；謬見(jiàn)；誤會(huì)

24. mutation [mju??te??（?）n] n. 變化；變異

25. purgatory [?p??（r）ɡ?t（?）ri] n. 煉獄

26. pedestrian [p??destri?n] adj. 缺乏想象力的，平淡無(wú)奇的，乏味的

27. quench [kwent?] vt. 解（渴）；止（渴）

28. angst [??st] n. 憂慮；疑懼

29. Samuel Beckett：塞繆爾·貝克特（1906～1989），20世紀(jì)法國(guó)作家，荒誕派戲劇的重要代表人物，創(chuàng)作的領(lǐng)域包括戲劇、小說(shuō)和詩(shī)歌，代表作為《等待戈多》（Waiting for Godot）。1969年，他獲得諾貝爾文學(xué)獎(jiǎng)。

30. impassable [?m?pɑ?s?b（?）l] adj. 不能通行的；不能逾越的