我將死去，但我還活著（斯坦福醫院神經外科的住院總醫生抗癌感悟）
(2014-02-18 00:01:43)當CT掃描完成後，我立刻開始看片子。診斷結果隨即出來了：雙肺大片包塊，脊椎變形。癌症。在我的神經外科生涯中，我曾和醫生同行們共同會診過上千張片子，確認手術是否能帶來希望。我會在病曆上匆匆寫下幾筆：癌症廣泛轉移——無手術指征。接著就繼續幹別的事情了。隻是，這張片子不一樣：它是我自己的CT掃描。
我曾與無數病人和他們的家屬坐在一起，討論他們冷酷的前景：這就是醫生要做的最重要的工作之一。如果病人是94歲，患有終末期的失憶症，出現嚴重腦出血，談話要容易些。可對於像我這樣的年輕人——我36歲，並且確診是癌症，能說的話就沒有多少了。我的標準說法包括“這是場馬拉鬆，不是衝刺，所以你每天得休息好”，以及“疾病可以讓一家人四分五裂，也可以讓大家團結起來——你們要了解身邊人的需求，並且尋求外界支持。”
我從中學到了幾條最基本的規則。談到病情預後時需要坦誠，但又要留下希望的空間。說話時既要含糊又要準確：“從幾天到幾周”，“從幾周到幾個月”，“從幾個月到幾年”，“從幾年到十年或者更久”。我們從不引用具體的數據，通常建議病人和家屬不要在網上搜索存活期的數字，因為我們猜想普通的病人無法細致入微地理解數據。
在聽到“X療法的生存率為70%”和“Y療法的死亡率為30%”時，反應是不一樣的。聽到這樣的表述，人們會蜂擁選擇X療法，哪怕這兩種療法的實際效果實際上一樣。我的一個好友得了胰腺癌，結果我就成了他親友團的醫學顧問，盡管他們都是非常資深的統計學家。我仍然勸他們不要查找數據，跟他們說現在能找到的五年生存曲線至少落伍了五年。不知怎的，我總覺得光是這些數字還太幹巴巴了，或者說，醫生與疾病每天打交道的過程中，還需要得到更多的來龍去脈。更重要的是，我有這樣一種衝動：保持希望。
這些生存率曲線稱為卡普蘭-邁耶曲線(Kaplan-Meier curves)，通過它我們可以了解癌症治療的進展，預知病人存活的時間。對於一些疾病來說，這條曲線看起來像是飛機緩緩著陸；而對於另一些疾病，看起來則像是俯衝的轟炸機。醫生們對這些曲線、它們的形態以及意義考慮良多。比方說在腦癌研究中，盡管平均生存期數字改變並不是很大，但曲線圖拖著的尾巴越來越長，這意味著一些病人已經存活了多年。問題是，你沒法判斷某位病人處於曲線圖上的什麽位置。竭力追求數據的精確無誤，這是不可能，甚至不負責任的。
你可能會以為，當我的腫瘤醫生坐在我的病床邊與我會麵時，我不會立刻請她告訴我有關生存期的數據。但現在，我已經從醫生的角色滑到了病人那一頭，我也和所有病人一樣，渴望了解具體的數字。我希望她能認識到，我既了解數據，同時也知道關於疾病的醫學真相，因此她應該能為我提供準確的、直截了當的結論。我能接受得了。她幹脆地拒絕了：“不，絕對不行。”她知道我會查找關於這種疾病的所有研究——我確實這樣做了。但肺癌不是我的專長，而她是這個領域的國際權威。在每次看病時，我們都要進行一場角力比賽，而她總是閃躲著，不提及任何一個數字。
現在，我不再為一些病人執意追問數字而感到困惑了，我反而開始想，為什麽醫生在掌握了這麽多知識，有這麽多經驗的情況下，還要把問題弄得這麽雲山霧罩。我剛看到自己的CT片子時，認為隻有幾個月好活了。片子看起來很糟糕。我看起來很糟糕。我瘦了30磅，出現了嚴重的背痛，一天比一天覺得虛弱。我的血檢報告顯示蛋白水平極低，紅細胞計數也很低，這跟我身體的感覺一樣：它已經無法滿足生存下去的基本動力了。
幾個月來，我一直懷疑自己得了癌症，我看過很多年輕的癌症病人，所以得知結果時我一點也不吃驚。事實上，我還感覺有些如釋重負。接下來要做的事情很明顯：準備去死。大哭。告訴妻子她應該再嫁，然後為房貸籌錢。給好朋友寫遲寄的信。是的，我本想在這輩子做很多事情，但有時這種事情就是會發生：當你平日的工作就是治療頭部受重傷和腦癌病人時，結局是什麽，對你再明顯不過了。
可是，在我與我的腫瘤醫生第一次見麵時，她談到了有朝一天我將重返工作崗位。那時我會是遊魂嗎？不會。可是，我能有多長時間？沉默。
當然，她也不能阻止我大量閱讀文獻。在查找資料時，我總是想找到一份報告，能告訴我一個準確的數字。大量研究顯示70%-80%的肺癌病人將在兩年內死亡。這沒有給我帶來多少希望。可是話說回來了，大部分病人年紀都更大，而且大量吸煙。有沒有一份研究針對的是不吸煙的36歲神經外科醫生？我年紀輕、身體好，也許這會有幫助？又或者，因為我的病發現得太晚，又擴散到遠處，我的情況遠比那些65歲的吸煙人士來得更糟糕？
我的很多親友對我講述了種種故事，比如朋友的朋友的媽媽的朋友或者叔叔的理發師的兒子的網球搭檔得了和我一樣的肺癌，現在已經活了10年。剛開始時，我尋思著這些故事的主角是不是同一個人，通過眾所周知的六度分隔理論聯係在一起。我覺得這些故事無非是一廂情願的想法、毫無根據的幻想。可是最後，這些故事漸漸潛入了我精通的現實主義的縫隙中。
接著，我的健康開始慢慢好轉，這得歸功於一種靶向藥，專門針對跟我的癌症有關的某種特定基因突變。我可以不用拄拐杖走路了，也可以說這樣的話：“嗯，能幸運地活10年，這對我真的不大可能，不過也不是完全希望。”一丁點的希望。
不過，從某個角度來說，死亡的確定性比這個不確定的生命更加簡單。那些身在煉獄的靈魂難道不是情願趕緊下地獄，好結束這一切嗎？我是不是應當做好葬禮安排？我是不是應該把全部時間用來陪伴妻子、父母、兄弟、朋友和我可愛的小侄女？寫一本我早就想寫的書？又或者應該回到醫院，和老板協商今後兩年的合同？
如果我知道等待自己的是幾個月還是幾年，前路或許會明朗很多。說我還有三個月，我會去陪伴家人。說我還有一年，我可以製訂一個計劃（寫完那本書）。說我還有10年，我可以回醫院治病救人。“活在當下”的老一套說辭沒什麽意義：我應當拿當下怎麽辦呢？我的腫瘤醫生隻是這樣說：“我沒法給你一個具體時間。你需要去發現對你最重要的事物。”
我開始意識到，與自己的死亡狹路相逢，這改變了一切，同時又什麽都未曾改變。在癌症確診前，我知道有一天自己會死，但我並不知道那是什麽時候的事情。在確診後，我知道有一天自己會死，但仍然不知道是什麽時候。而現在我已經深切地知道了。這並不是一個真正科學的問題。有關死亡的事實令人坐立不安。然而隻要是活著，就別無他法。
醫生們之所以不能向病人提供確切的預後，不僅僅是因為他們做不到。當然了，如果病人的預期完全超過了合理範圍——有些人希望自己能活到130歲，也有些人看到身上的一粒小痣就覺得死期將至——醫生們有義務將對方的預期拉回到合理的可能範圍內。
可是，合理的可能範圍仍然十分寬泛。根據現在的治療方案，我有可能在兩年內死亡，也有可能再撐10年。如果你再將今年兩三年可能出現的新治療帶來的不確定性考慮進來，這個範圍可能又會完全不一樣了。麵對死亡時，科學知識隻能提供一盎司的確定性：是的，你會死。可是，總有人想要滿滿一磅的確定性，而這還無法實現。
病人想尋找的並不是醫生們遮遮掩掩的科學知識，而是每個人都必須通過自己的力量找到的已經存在著的真實性。在數據裏陷得太深，如同喝鹽水來止渴。麵對死亡的憤懣，無法用未知的概率來治療。
我清楚地記得一個時刻：快要將我吞噬的不安突然慢慢消退。那時，我想起了塞繆爾·貝克特(Samuel Beckett)寫過的九個字，我在多年前上大學時讀過他的書，不過一直都沒好好讀過，但在那個瞬間，這句話清晰地在我腦海中重現，而眼前那個看來不可逾越的不確定的海洋突然分開了：“我無法前行。我將前行。”我往前走了一步，反複咀嚼著這句話：“我無法前行。我將前行。”接著，到了某一個節點，我獲得了頓悟。
現在，距離確診已經過去了八個月。我的體力顯著恢複了。在治療中，癌症暫時蟄伏。我漸漸重返工作。我拂去了研究手稿上的浮塵。我寫得更多、看得更多、感受更多。每天早上5點半，當我按下鬧鈴，僵死的身體蘇醒，而妻子仍在我身邊酣睡時，我會又一次對自己說：“我無法前行。”過了一分鍾，我已經穿上了刷手衣，走在去手術室的路上，仍然活著：“我將前行。”
保羅·卡蘭斯(Paul Kalanithi)是斯坦福醫院神經外科的住院總醫生。
本文最初發表於2014年1月26日。
How Long Have I Got Left?
AS soon as the CT scan was done, I began reviewing the images. The diagnosis was immediate: Masses matting the lungs and deforming the spine. Cancer. In my neurosurgical training, I had reviewed hundreds of scans for fellow doctors to see if surgery offered any hope. I’d scribble in the chart “Widely metastatic 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 prognoses: It’s one of the most important jobs physicians have. It’s easier when the patient is 94, in the last stages of dementia and has a severe brain bleed. For young people like me — I am 36 — given a diagnosis of cancer, there aren’t many words. My standard pieces include “it’s a marathon, not a sprint, so get your daily rest” and “illness can drive a family apart or bring it together — be aware of each other’s 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 doesn’t 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 pancreatic cancer, I became the medical maven to a group of people who were sophisticated statisticians. I still dissuaded 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 physician’s daily experience with illness was needed for context. Mostly, I felt that impulse: Keep a measure of hope.
These survival curves, called Kaplan-Meier curves, 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 bomber. 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 haven’t changed much, there’s an increasingly long tail on the curve, indicating a few patients are living for years. The problem is that you can’t tell an individual patient where she is on the curve. It’s impossible, irresponsible even, to be more precise than you can be accurate.
One would think, then, that when my oncologist sat by my bedside to meet me, I would not immediately demand information on survival statistics. But now that I had traversed 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 dope. 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 wasn’t 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 obfuscate 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. I’d lost 30 pounds, developed excruciating 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, I’d suspected I had cancer. I had seen a lot of young patients with cancer. So I wasn’t taken aback. 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 day’s work includes treating head trauma and brain cancer.
But on my first visit with my oncologist, she mentioned my going back to work someday. Wasn’t 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 up. 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 of my-friend’s-friend’s-mom’s-friend or my-uncle’s-barber’s-son’s-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 proverbial six degrees. I disregarded them as wishful thinking, baseless delusion. 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 mutation tied to my cancer. I began to walk without a cane and to say things like, “Well, it’s pretty unlikely that I’ll be lucky enough to live for a decade, but it’s possible.” A tiny drop of hope.
In a way, though, the certainty of death was easier than this uncertain life. Didn’t those in purgatory 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, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. The pedestrian truth that you live one day at a time didn’t help: What was I supposed to do with that day? My oncologist would say only: “I can’t tell you a time. You’ve 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 didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.
The reason doctors don’t give patients specific prognoses is not merely because they cannot. Certainly, if a patient’s 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 person’s expectations into the realm of reasonable possibility.
But the range of what is reasonably possible is just so wide. Based on today’s 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 quench a thirst with salty water. The angst of facing mortality has no remedy in probability.
I remember the moment when my overwhelming uneasiness yielded. Seven words from Samuel Beckett, a writer I’ve not even read that well, learned long ago as an undergraduate, began to repeat in my head, and the seemingly impassable sea of uncertainty parted: “I can’t go on. I’ll go on.” I took a step forward, repeating the phrase over and over: “I can’t go on. I’ll 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. I’m knocking the dust off scientific manuscripts. I’m 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 can’t go on.” And a minute later, I am in my scrubs, heading to the operating room, alive: “I’ll go on.”
Paul Kalanithi is a chief resident in neurological surgery at Stanford University
我曾與無數病人和他們的家屬坐在一起，討論他們冷酷的前景：這就是醫生要做的最重要的工作之一。如果病人是94歲，患有終末期的失憶症，出現嚴重腦出血，談話要容易些。可對於像我這樣的年輕人——我36歲，並且確診是癌症，能說的話就沒有多少了。我的標準說法包括“這是場馬拉鬆，不是衝刺，所以你每天得休息好”，以及“疾病可以讓一家人四分五裂，也可以讓大家團結起來——你們要了解身邊人的需求，並且尋求外界支持。”
我從中學到了幾條最基本的規則。談到病情預後時需要坦誠，但又要留下希望的空間。說話時既要含糊又要準確：“從幾天到幾周”，“從幾周到幾個月”，“從幾個月到幾年”，“從幾年到十年或者更久”。我們從不引用具體的數據，通常建議病人和家屬不要在網上搜索存活期的數字，因為我們猜想普通的病人無法細致入微地理解數據。
在聽到“X療法的生存率為70%”和“Y療法的死亡率為30%”時，反應是不一樣的。聽到這樣的表述，人們會蜂擁選擇X療法，哪怕這兩種療法的實際效果實際上一樣。我的一個好友得了胰腺癌，結果我就成了他親友團的醫學顧問，盡管他們都是非常資深的統計學家。我仍然勸他們不要查找數據，跟他們說現在能找到的五年生存曲線至少落伍了五年。不知怎的，我總覺得光是這些數字還太幹巴巴了，或者說，醫生與疾病每天打交道的過程中，還需要得到更多的來龍去脈。更重要的是，我有這樣一種衝動：保持希望。
這些生存率曲線稱為卡普蘭-邁耶曲線(Kaplan-Meier curves)，通過它我們可以了解癌症治療的進展，預知病人存活的時間。對於一些疾病來說，這條曲線看起來像是飛機緩緩著陸；而對於另一些疾病，看起來則像是俯衝的轟炸機。醫生們對這些曲線、它們的形態以及意義考慮良多。比方說在腦癌研究中，盡管平均生存期數字改變並不是很大，但曲線圖拖著的尾巴越來越長，這意味著一些病人已經存活了多年。問題是，你沒法判斷某位病人處於曲線圖上的什麽位置。竭力追求數據的精確無誤，這是不可能，甚至不負責任的。
你可能會以為，當我的腫瘤醫生坐在我的病床邊與我會麵時，我不會立刻請她告訴我有關生存期的數據。但現在，我已經從醫生的角色滑到了病人那一頭，我也和所有病人一樣，渴望了解具體的數字。我希望她能認識到，我既了解數據，同時也知道關於疾病的醫學真相，因此她應該能為我提供準確的、直截了當的結論。我能接受得了。她幹脆地拒絕了：“不，絕對不行。”她知道我會查找關於這種疾病的所有研究——我確實這樣做了。但肺癌不是我的專長，而她是這個領域的國際權威。在每次看病時，我們都要進行一場角力比賽，而她總是閃躲著，不提及任何一個數字。
現在，我不再為一些病人執意追問數字而感到困惑了，我反而開始想，為什麽醫生在掌握了這麽多知識，有這麽多經驗的情況下，還要把問題弄得這麽雲山霧罩。我剛看到自己的CT片子時，認為隻有幾個月好活了。片子看起來很糟糕。我看起來很糟糕。我瘦了30磅，出現了嚴重的背痛，一天比一天覺得虛弱。我的血檢報告顯示蛋白水平極低，紅細胞計數也很低，這跟我身體的感覺一樣：它已經無法滿足生存下去的基本動力了。
幾個月來，我一直懷疑自己得了癌症，我看過很多年輕的癌症病人，所以得知結果時我一點也不吃驚。事實上，我還感覺有些如釋重負。接下來要做的事情很明顯：準備去死。大哭。告訴妻子她應該再嫁，然後為房貸籌錢。給好朋友寫遲寄的信。是的，我本想在這輩子做很多事情，但有時這種事情就是會發生：當你平日的工作就是治療頭部受重傷和腦癌病人時，結局是什麽，對你再明顯不過了。
可是，在我與我的腫瘤醫生第一次見麵時，她談到了有朝一天我將重返工作崗位。那時我會是遊魂嗎？不會。可是，我能有多長時間？沉默。
當然，她也不能阻止我大量閱讀文獻。在查找資料時，我總是想找到一份報告，能告訴我一個準確的數字。大量研究顯示70%-80%的肺癌病人將在兩年內死亡。這沒有給我帶來多少希望。可是話說回來了，大部分病人年紀都更大，而且大量吸煙。有沒有一份研究針對的是不吸煙的36歲神經外科醫生？我年紀輕、身體好，也許這會有幫助？又或者，因為我的病發現得太晚，又擴散到遠處，我的情況遠比那些65歲的吸煙人士來得更糟糕？
我的很多親友對我講述了種種故事，比如朋友的朋友的媽媽的朋友或者叔叔的理發師的兒子的網球搭檔得了和我一樣的肺癌，現在已經活了10年。剛開始時，我尋思著這些故事的主角是不是同一個人，通過眾所周知的六度分隔理論聯係在一起。我覺得這些故事無非是一廂情願的想法、毫無根據的幻想。可是最後，這些故事漸漸潛入了我精通的現實主義的縫隙中。
接著，我的健康開始慢慢好轉，這得歸功於一種靶向藥，專門針對跟我的癌症有關的某種特定基因突變。我可以不用拄拐杖走路了，也可以說這樣的話：“嗯，能幸運地活10年，這對我真的不大可能，不過也不是完全希望。”一丁點的希望。
不過，從某個角度來說，死亡的確定性比這個不確定的生命更加簡單。那些身在煉獄的靈魂難道不是情願趕緊下地獄，好結束這一切嗎？我是不是應當做好葬禮安排？我是不是應該把全部時間用來陪伴妻子、父母、兄弟、朋友和我可愛的小侄女？寫一本我早就想寫的書？又或者應該回到醫院，和老板協商今後兩年的合同？
如果我知道等待自己的是幾個月還是幾年，前路或許會明朗很多。說我還有三個月，我會去陪伴家人。說我還有一年，我可以製訂一個計劃（寫完那本書）。說我還有10年，我可以回醫院治病救人。“活在當下”的老一套說辭沒什麽意義：我應當拿當下怎麽辦呢？我的腫瘤醫生隻是這樣說：“我沒法給你一個具體時間。你需要去發現對你最重要的事物。”
我開始意識到，與自己的死亡狹路相逢，這改變了一切，同時又什麽都未曾改變。在癌症確診前，我知道有一天自己會死，但我並不知道那是什麽時候的事情。在確診後，我知道有一天自己會死，但仍然不知道是什麽時候。而現在我已經深切地知道了。這並不是一個真正科學的問題。有關死亡的事實令人坐立不安。然而隻要是活著，就別無他法。
醫生們之所以不能向病人提供確切的預後，不僅僅是因為他們做不到。當然了，如果病人的預期完全超過了合理範圍——有些人希望自己能活到130歲，也有些人看到身上的一粒小痣就覺得死期將至——醫生們有義務將對方的預期拉回到合理的可能範圍內。
可是，合理的可能範圍仍然十分寬泛。根據現在的治療方案，我有可能在兩年內死亡，也有可能再撐10年。如果你再將今年兩三年可能出現的新治療帶來的不確定性考慮進來，這個範圍可能又會完全不一樣了。麵對死亡時，科學知識隻能提供一盎司的確定性：是的，你會死。可是，總有人想要滿滿一磅的確定性，而這還無法實現。
病人想尋找的並不是醫生們遮遮掩掩的科學知識，而是每個人都必須通過自己的力量找到的已經存在著的真實性。在數據裏陷得太深，如同喝鹽水來止渴。麵對死亡的憤懣，無法用未知的概率來治療。
我清楚地記得一個時刻：快要將我吞噬的不安突然慢慢消退。那時，我想起了塞繆爾·貝克特(Samuel Beckett)寫過的九個字，我在多年前上大學時讀過他的書，不過一直都沒好好讀過，但在那個瞬間，這句話清晰地在我腦海中重現，而眼前那個看來不可逾越的不確定的海洋突然分開了：“我無法前行。我將前行。”我往前走了一步，反複咀嚼著這句話：“我無法前行。我將前行。”接著，到了某一個節點，我獲得了頓悟。
現在，距離確診已經過去了八個月。我的體力顯著恢複了。在治療中，癌症暫時蟄伏。我漸漸重返工作。我拂去了研究手稿上的浮塵。我寫得更多、看得更多、感受更多。每天早上5點半，當我按下鬧鈴，僵死的身體蘇醒，而妻子仍在我身邊酣睡時，我會又一次對自己說：“我無法前行。”過了一分鍾，我已經穿上了刷手衣，走在去手術室的路上，仍然活著：“我將前行。”
保羅·卡蘭斯(Paul Kalanithi)是斯坦福醫院神經外科的住院總醫生。
本文最初發表於2014年1月26日。
How Long Have I Got Left?
AS soon as the CT scan was done, I began reviewing the images. The diagnosis was immediate: Masses matting the lungs and deforming the spine. Cancer. In my neurosurgical training, I had reviewed hundreds of scans for fellow doctors to see if surgery offered any hope. I’d scribble in the chart “Widely metastatic 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 prognoses: It’s one of the most important jobs physicians have. It’s easier when the patient is 94, in the last stages of dementia and has a severe brain bleed. For young people like me — I am 36 — given a diagnosis of cancer, there aren’t many words. My standard pieces include “it’s a marathon, not a sprint, so get your daily rest” and “illness can drive a family apart or bring it together — be aware of each other’s 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 doesn’t 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 pancreatic cancer, I became the medical maven to a group of people who were sophisticated statisticians. I still dissuaded 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 physician’s daily experience with illness was needed for context. Mostly, I felt that impulse: Keep a measure of hope.
These survival curves, called Kaplan-Meier curves, 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 bomber. 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 haven’t changed much, there’s an increasingly long tail on the curve, indicating a few patients are living for years. The problem is that you can’t tell an individual patient where she is on the curve. It’s impossible, irresponsible even, to be more precise than you can be accurate.
One would think, then, that when my oncologist sat by my bedside to meet me, I would not immediately demand information on survival statistics. But now that I had traversed 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 dope. 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 wasn’t 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 obfuscate 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. I’d lost 30 pounds, developed excruciating 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, I’d suspected I had cancer. I had seen a lot of young patients with cancer. So I wasn’t taken aback. 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 day’s work includes treating head trauma and brain cancer.
But on my first visit with my oncologist, she mentioned my going back to work someday. Wasn’t 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 up. 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 of my-friend’s-friend’s-mom’s-friend or my-uncle’s-barber’s-son’s-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 proverbial six degrees. I disregarded them as wishful thinking, baseless delusion. 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 mutation tied to my cancer. I began to walk without a cane and to say things like, “Well, it’s pretty unlikely that I’ll be lucky enough to live for a decade, but it’s possible.” A tiny drop of hope.
In a way, though, the certainty of death was easier than this uncertain life. Didn’t those in purgatory 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, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. The pedestrian truth that you live one day at a time didn’t help: What was I supposed to do with that day? My oncologist would say only: “I can’t tell you a time. You’ve 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 didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.
The reason doctors don’t give patients specific prognoses is not merely because they cannot. Certainly, if a patient’s 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 person’s expectations into the realm of reasonable possibility.
But the range of what is reasonably possible is just so wide. Based on today’s 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 quench a thirst with salty water. The angst of facing mortality has no remedy in probability.
I remember the moment when my overwhelming uneasiness yielded. Seven words from Samuel Beckett, a writer I’ve not even read that well, learned long ago as an undergraduate, began to repeat in my head, and the seemingly impassable sea of uncertainty parted: “I can’t go on. I’ll go on.” I took a step forward, repeating the phrase over and over: “I can’t go on. I’ll 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. I’m knocking the dust off scientific manuscripts. I’m 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 can’t go on.” And a minute later, I am in my scrubs, heading to the operating room, alive: “I’ll go on.”
Paul Kalanithi is a chief resident in neurological surgery at Stanford University
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