一位患癌醫生的自白 本文檔格式為 WORD,感謝你的閱讀。 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 metasta tic4） diseaseno 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 meI am 36given 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 togetherbe 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 I still dissuaded10） them from looking up the statistics， saying five-year survival curves are at least five years out of date.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 couldand didlook 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 ba ck 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 probabilitysomeone expecting to live to 130， or someone thinking his benign skin spots are signs of impending deathdoctors 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，我就開始審視影像。診斷結果立即得出：大量物質正積聚在肺部，使脊椎變形。是癌癥！在我所接受的神經外科訓練中，我已經為同事查看過數百個掃描結果，以確定手術是否能帶來一絲希望。我常常會在表格里潦草地寫下 “ 疾病 已廣泛轉移 手術無作用 ” ，然后該干嗎干嗎去。但這次掃描不一樣：這是我自己的圖像。 我曾經同無數的病人及家屬坐在一起討論過嚴峻的預后情況：這是醫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重的腦出血，事情就比較簡單了。但對于像我這樣的年輕人 我 36 歲 被診斷為癌癥，真是沒有太多可以說的。我的標準回應包括“ 這是一場馬拉松，而非短跑比賽，所以每天都要休息 ” ，以及 “ 疾病可以拆散一個家庭，也可以使一個家庭更為齊心協力 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則。對預后要實話實說，但要始終留有希望的余地。可以說得含糊一些，但一定要準確：“ 從幾天到幾周 ” ， “ 從幾周到幾個月 ” ， “ 從幾個月到幾年 ” ， “ 從幾年到十年或更久 ” 。我們從不引用詳細的統計數據，通常也不建議在谷歌上搜索存活數據，因為我們認為普通患者對統計數據不具備細致入微的理解力。 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 ” ，那么病人的反應是不同的。聽到這樣的話，人們會一窩蜂地選擇 X 流程，即使兩者包含的數據是相同的。有一次，一個好朋友得了胰腺癌，在 一群動不動就拿統計數據說事的人面前，我只好擔負起醫學專家的角色。我仍然勸他們不要查看統計數據，告訴他們五年存活曲線至少已過時五年。不知為什么，我覺得僅僅拿數字說事太過乏味，覺得還需要參考醫生處理疾病的日常經驗才行。多數時候，我感到有一種沖動，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，是我們評估癌癥治療進展的一種方式，繪制的是在一定時間內患者的存活數量。對某些疾病而言，該曲線看上去就像一架緩緩降落的飛機；而對另一些疾病而言，它就像是一架俯沖直下的轟炸機。醫生們會對這些曲線、曲線形 狀及其所代表的意義進行大量思考。譬如，在腦腫瘤研究中，雖然達到平均存活時間的人數并沒有發生多大變化，但在曲線上有一條越來越長的尾巴，表明一些患者會存活數年之久。問題是，你無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確，而要做到更加精確是不可能的，甚至是不負責任的。 那么，有人也許會想，當腫瘤醫師坐在我的床邊為我診病時，我應該不會立刻詢問她關于存活數據的信息。但既然我已經從醫生變成了患者，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既懂得統計數據又懂得疾病醫理的人，希望她可 以告訴我確定的事實，最直接的內幕消息。我還是能接受的。但她一口回絕了： “ 不行，絕對不行。 ” 她非常了解我可能會查閱關于這一課題的所有研究 事實上我也確實查閱了。但肺癌不是我的專長，而她則是一位世界級專家。每一次約見都是一場較量，而她總是避免明確吐露任何數字。 如今，我已不再思考為什么有的患者非要詢問統計數據的問題，相反，我開始思考為什么醫生擁有那么豐富的學識和經驗卻還是含糊其辭。最初，當我看到自己的 CT 掃描圖像時，我想我只有幾個月可活了。圖像看起來很糟。我看起來也很糟。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。檢查結果表明，我的蛋白質水平嚴重低下，血球計數減少，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的基本動力。 數月以來，我一直懷疑我得了癌癥。我見過太多年輕的癌癥患者，所以我并不感到震驚。事實上，我反而感到某種解脫。接下來要做的事情很明確：等死。痛哭。告訴我妻子她應該再婚，還要再為房貸籌備資金。給好朋友們寫早就該寫的信件。是的，生活中我想做而未做的事情太多了，但有時這無法避免。當你每天要做的事情包括治療顱腦損傷和腦腫瘤時，這一點就再明顯不過了。 但當 我第一次去見我的腫瘤醫生時，她提到我某天可以回去工作。我不是已經被判死刑了嗎？沒有。那么我還能活多長時間呢？她沉默了。 當然，她無法阻止我如饑似渴地查閱資料。在研讀資料時，我一直想找到一篇文章能夠告訴我還有多少日子可走。大多數一般性研究都說 70% 80%的肺癌患者會在兩年內死亡。它們都沒有給我帶來多少希望。但話又說回來，那些患者絕大多數都比我年齡大，而且還是重度煙民。有沒有對不抽煙的 36 歲神經外科醫生的研究資料呢？也許我的年輕和健康會發揮關鍵作用呢？又或許我的疾病發現得太晚，早已大面積擴散，我已經 病入膏肓，遠不如那些 65 歲的煙民呢？ 很多朋友和家人會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師的兒子的網球伙伴得過同樣的肺癌，但已經活了十年了。最初，我猜想所有這些故事指的都是同一個人吧，通過著名的 “ 六度分隔理論 ” 聯系到一起了。我對這些奇聞不屑一顧，認為它們不過是一廂情愿的想法，是毫無根據的幻想。不過最后，這類傳聞還是有不少透過我注重研究、實事求是的觀念的 “ 裂縫 ” 滲透進來。 接著，我的健康狀況開始好轉，這多虧了一種藥物，它是與我癌癥相關的某種基因突變的克星 。我已可以不用拐杖就能走路了，也開始說一些這樣的話： “ 要說我有幸能再活十年，那不太可能，但也不是完全不可能。 ” 終于還是有了一絲希望。 但是，從某種程度上說，難逃一死的滋味總要勝過生死未卜的煎熬。那些在煉獄中受盡煎熬的人不都寧愿趕緊下地獄了結一切嗎？我是不是應該安排好自己的葬禮呢？是不是應該把所有時間都留給我的妻子、父母、兄弟、朋友，還有我可愛的侄女呢？是不是應該把那本我一直想寫的書寫出來呢？或者，我是不是應該回去商談我多年的工作機會呢？ 倘若我知道自己還有幾個月或者幾年的日子，前方的道路 就會明確得多。若告訴我還有三個月，我將僅與家人共度時光。若告訴我還有一年，我將完成一個計劃（寫那本書）。給我十年時間，我將會重操舊業，給病人看病。不要對我說活一天算一天這種老掉牙的道理，沒用 這一天我該做什么？我的腫瘤醫生只會說： “ 我無法告訴你確定的時間。你必須找到對你來說最重要的事情。 ” 我開始意識到，在某種意義上，直面自己的死亡這件事既可以說什么都沒有改變，也可以說改變了一切。在癌癥被確診前，我知道總有一天自己會死去，但不知道會是何時。確診之后，我還是知道某一天自己會死去，但還是不知何時。只 不過現在我更加敏銳地知道這一點。這實際上不是一個科學問題。死亡的存在令人心神不安。但人生就是如此，別無選擇。 醫生不給患者提供明確的預測，不僅僅是因為他們無法做到。當然，如果一個患者的期待遠遠超出了可能性范圍 比如有人希望自己活到 130 歲，或者某人認為他的良性皮膚斑是死亡將至的信號 醫生就有責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。根據目前的治療手段，我可能兩年內就會死去，也可能會撐到十年。如果再加上未來兩三年內新的治療手段所帶來的不確定性，這個范圍又會完全 不同。面對死亡的命運，科學知識僅能提供微不足道的確定性：沒錯，人必有一死。但人們總想獲得百分之百的確定性，而那是無法滿足的。 患者所尋求的并不是醫生隱瞞的科學知識，而是存在的真實性，這樣的真實性是每個人必須獨自去發現的。過于糾結于統計數據無異于飲鴆止渴。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 一個我甚至還沒有好好讀過的作家 說過的兩句話救了我。這兩句話是我很久以前上大學時學過的，最近開始縈繞在我腦海中： “ 我撐不下去了。我一 定要撐下去。 ” 那看似不可逾越的不確定之鴻溝頓時消失。我向前邁出一步，一遍又一遍地重復著這兩句話： “ 我撐不下去了。我一定要撐下去。 ” 終于，在某一時刻，我闖過來了。 現在，距我確診為癌癥差不多有整整八個月時間了。我的體力已大體復原。通過治療，癌癥正在消退。我已漸漸開始做一些工作。我彈掉科學手稿上的灰塵，堅持多