雙語·當呼吸化為空氣 如此接近自己的死亡

我開始意識到，如此接近自己的死亡，好像什么都沒改變，又好像一切都改變了。查出癌癥之前，我知道總有一天我會死，但不知道到底是哪一天。查出癌癥以后，同樣地，我知道總有一天我會死，但不知道到底是哪一天。不過，我對死亡的感覺變得更尖銳和強烈了。這個問題已經(jīng)不是科學層面可以解決的了。死亡臨近的事實令人坐立不安，但也沒有其他辦法可以繞道而活。
I began to realize that coming in such close contact with my own mortality 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.

慢慢地，醫(yī)學上的迷霧也“撥云見日”——至少現(xiàn)在我掌握了足夠的信息，可以盡情翻閱相關(guān)資料了。雖然各項數(shù)據(jù)還是很模糊，但至少可以說，EGFR有突變的話，大概平均能多活一年，甚至還有長期生存下去的可能性；如果沒有，那就有80%的概率在兩年內(nèi)死亡。要搞清楚我還能活多久，還需要等待檢查結(jié)果。
Slowly the medical fog was clearing—at least now I had enough information to dive into the literature. While the numbers were fuzzy, having an EGFR mutation seemed to add around a year of life on average, with the potential for long-term survival; not having it suggested an 80 percent chance of death within two years. Clarifying the rest of my life was going to be a process.

第二天，露西和我去了精子銀行，我留下一些生殖細胞，也給自己多留了條路。我們原本計劃等我住院醫(yī)生的生涯結(jié)束后就要孩子，但現(xiàn)在……抗癌藥物對我的精子的影響還不得而知，所以，如果還想要孩子，我們不得不在開始治療之前冷凍一些精子。一個年輕姑娘給我們介紹了各種付款方式、儲存方式，還有關(guān)于所有權(quán)的法律表格。她桌上擺著各種五顏六色的小冊子，都是年輕癌癥患者的社交活動宣傳：即興表演小組、無伴奏合唱小組、開放式表演晚會，等等。我對小冊子上那些歡快的臉龐真是“羨慕嫉妒恨”，因為，從數(shù)據(jù)上說，這些人得的癌癥應(yīng)該都比較容易治療，剩余的壽命也應(yīng)該比較長。三十六歲就得肺癌的概率只有0.0012%。誠然，得了癌癥都是不幸的，但癌癥和癌癥也是有區(qū)別的。如果得了“那種癌癥”，那你是真的真的很不幸。姑娘問我們，要是我們其中一個“不幸去世”，該怎么辦，法律上來說誰擁有這些精子。淚水從露西臉上滑落。
The next day, Lucy and I went to the sperm bank, to preserve gametes and options. We had always planned to have kids at the end of my residency, but now. . . The cancer drugs would have an unknown effect on my sperm, so to keep a chance of having children, we’d have to freeze sperm before I started treatment. A young woman walked us through a variety of payment plans and options for storage and legal forms for ownership. On her desk were a multitude of colorful pamphlets about various social outings for young people with cancer: improv groups, a cappella groups, open-mike nights, and so on. I envied their happy faces, knowing that, statistically, they all probably had highly treatable forms of cancer, and reasonable life expectancies. Only 0.0012 percent of thirty-six-year-olds get lung cancer. Yes, all cancer patients are unlucky, but there’s cancer, and then there’s CANCER, and you have to be really unlucky to have the latter. When she asked us to specify what would happen to the sperm if one of us“were to die”—who would legally own them in the event of death—tears began rolling down Lucy’s face.

英語里的“希望（hope）”這個詞出現(xiàn)在大概一千年前，融合了信心與渴望的含義。但我現(xiàn)在渴望的是活下去，有信心的卻是死亡，這兩者可是截然相反的啊。那么，當我說起“希望”的時候，是不是“為沒有根據(jù)的渴望留下一些空間”的意思呢？不是的。醫(yī)學數(shù)據(jù)不僅僅會顯示平均存活率這一類數(shù)字，也會測量我們對這些數(shù)據(jù)的信心水平，測量工具包括置信度、置信區(qū)間和置信域等。所以，我口中的“希望”，是不是指“為一個統(tǒng)計學上不大可能但仍然說不準的結(jié)果留一點空間，相信自己能超越95%的標準測量置信區(qū)間活下來”呢？這就是“希望”嗎？我們能不能把這個曲線準確地劃分區(qū)域，從“崩潰”到“悲觀”到“現(xiàn)實”到“希望”再到“幻覺”呢？還是說數(shù)字就只是數(shù)字？我們難道不都曾懷著希望，覺得每個病人都能奇跡般地超越平均值嗎？
The word hope first appeared in English about a thousand years ago, denoting some combination of confidence and desire. But what I desired—life—was not what I was confident about—death. When I talked about hope, then, did I really mean “Leave some room for unfounded desire?” No. Medical statistics not only describe numbers such as mean survival, they measure our confidence in our numbers, with tools like confidence levels, confidence intervals, and confidence bounds. So did I mean “Leave some room for a statistically improbable but still plausible outcome—a survival just above the measured 95 percent confidence interval?” Is that what hope was? Could we divide the curve into existential sections, from “defeated”to “pessimistic” to “realistic” to “hopeful” to “delusional”? Weren’t the numbers just the numbers? Had we all just given in to the “hope”that every patient was above average?

我發(fā)現(xiàn)，當自己成為這個數(shù)據(jù)中的一員時，我與數(shù)據(jù)的關(guān)系，就完全改變了。
It occurred to me that my relationship with statistics changed as soon as I became one.

住院醫(yī)生時期，我曾經(jīng)和無數(shù)病人與家屬談過殘酷的預后狀況：這是一個醫(yī)生最重要的工作之一。如果這個病人已經(jīng)九十四歲高齡，癡呆癥晚期，嚴重腦出血，談起來倒是比較容易。但是像我這樣的病人，三十六歲，癌癥晚期，那真是不知道說什么好。
During my residency, I had sat with countless patients and families to discuss grim prognoses; it’s one of the most important jobs you have, as a physician. It’s easier when the patient is ninety-four, in the last stages of dementia, with a severe brain bleed. But for someone like me—a thirty-six-year-old given a diagnosis of terminal cancer—there aren’t really words.

醫(yī)生之所以不跟病人談具體的預后狀況，不僅僅是因為他們不能。當然，如果一個病人的期望實在太不切實際，比如有些人覺得自己能活到一百三十歲，有的又覺得皮膚上長了幾個微不足道的斑點就是將死的征兆，那么，醫(yī)生應(yīng)該引導他們，讓他們的想法變得合理一些。病人們尋求的，不是醫(yī)生們沒說出口的科學知識，而是那種必須靠自己才能獲得的穩(wěn)妥的真切感。過于深入地談?wù)摂?shù)據(jù)，就像給干渴的人喂太咸的水，無異于飲鴆止渴。面對死亡產(chǎn)生的那種焦慮，遠不是數(shù)據(jù)上的“概率”可以緩解的。
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, say, or someone thinking his benign skin spots are signs of imminent death—doctors are entrusted to bring that person’s expectations into the realm of reasonable possibility. What patients seek is not scientific knowledge doctors hide but existential authenticity each person must find on her own. Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.

從精子銀行回到家，我接了個電話，被告知的確有EGFR突變，可以治療。謝天謝地，不用去化療了，我要開始服用特羅凱這種小小的白色藥片了。我感覺自己一下子強壯了許多，而且突然有了一絲希望，雖然如今的我已經(jīng)不太明白“希望”的真正含義?；\罩在我生命周圍的迷霧又消散了一點點，露出一線藍天。接下來的幾周，我又有胃口了，體重回升了一些；我長了嚴重的痤瘡，不過這通常代表藥效良好。露西一直很喜歡我光滑的皮膚，但現(xiàn)在上面痘瘡遍布，再加上我攝入了血液稀釋劑，所以這些瘡疤總在流血。如果說以前我身上還有些地方稱得上“帥氣”的話，現(xiàn)在這種氣質(zhì)正在慢慢地流失，不過，公平地說，我寧愿丑一點，也要保命啊。露西說她還和以前一樣愛我的皮膚，才不管痤瘡什么的呢。然而，盡管我很清楚人的特性不僅來自大腦，但現(xiàn)在也只能完全聽大腦的擺布和支配了。那個熱愛遠足、露營、跑步，會通過熱情的擁抱來表達愛意，會把侄女高高拋起逗得她咯咯直笑的男人，已經(jīng)一去不復返了。我充其量也只能把他作為“奮斗目標”而已。
When we arrived home from the sperm bank, I got a phone call saying that I did, in fact, have a treatable mutation (EGFR). Chemo was off, thankfully, and Tarceva, a little white pill, became my treatment. I soon began to feel stronger. And even though I no longer really knew what it was, I felt it: a drop of hope. The fog surrounding my life rolled back another inch, and a sliver of blue sky peeked through. In the weeks that followed, my appetite returned. I put on a little weight. I developed the characteristic severe acne that correlates with a good response. Lucy had always loved my smooth skin, but now it was pockmarked and, with my blood thinners, constantly bleeding. Any part of me that identified with being handsome was slowly being erased—though, in fairness, I was happy to be uglier and alive. Lucy said she loved my skin just the same, acne and all, but while I knew that our identities derive not just from the brain, I was living its embodied nature. The man who loved hiking, camping, and running, who expressed his love through gigantic hugs, who threw his giggling niece high in the air—that was a man I no longer was. At best, I could aim to be him again.