双语·当呼吸化为空气 如此接近自己的死亡

我开始意识到，如此接近自己的死亡，好像什么都没改变，又好像一切都改变了。查出癌症之前，我知道总有一天我会死，但不知道到底是哪一天。查出癌症以后，同样地，我知道总有一天我会死，但不知道到底是哪一天。不过，我对死亡的感觉变得更尖锐和强烈了。这个问题已经不是科学层面可以解决的了。死亡临近的事实令人坐立不安，但也没有其他办法可以绕道而活。
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，医学上的迷雾也“拨云见日”——至少现在我掌握了足够的信息，可以尽情翻阅相关资料了。虽然各项数据还是很模糊，但至少可以说，EGFR有突变的话，大概平均能多活一年，甚至还有长期生存下去的可能性；如果没有，那就有80%的概率在两年内死亡。要搞清楚我还能活多久，还需要等待检查结果。
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，露西和我去了精子银行，我留下一些生殖细胞，也给自己多留了条路。我们原本计划等我住院医生的生涯结束后就要孩子，但现在……抗癌药物对我的精子的影响还不得而知，所以，如果还想要孩子，我们不得不在开始治疗之前冷冻一些精子。一个年轻姑娘给我们介绍了各种付款方式、储存方式，还有关于所有权的法律表格。她桌上摆着各种五颜六色的小册子，都是年轻癌症患者的社交活动宣传：即兴表演小组、无伴奏合唱小组、开放式表演晚会，等等。我对小册子上那些欢快的脸庞真是“羡慕嫉妒恨”，因为，从数据上说，这些人得的癌症应该都比较容易治疗，剩余的寿命也应该比较长。三十六岁就得肺癌的概率只有0.0012%。诚然，得了癌症都是不幸的，但癌症和癌症也是有区别的。如果得了“那种癌症”，那你是真的真的很不幸。姑娘问我们，要是我们其中一个“不幸去世”，该怎么办，法律上来说谁拥有这些精子。泪水从露西脸上滑落。
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.

英语里的“希望（hope）”这个词出现在大概一千年前，融合了信心与渴望的含义。但我现在渴望的是活下去，有信心的却是死亡，这两者可是截然相反的啊。那么，当我说起“希望”的时候，是不是“为没有根据的渴望留下一些空间”的意思呢？不是的。医学数据不仅仅会显示平均存活率这一类数字，也会测量我们对这些数据的信心水平，测量工具包括置信度、置信区间和置信域等。所以，我口中的“希望”，是不是指“为一个统计学上不大可能但仍然说不准的结果留一点空间，相信自己能超越95%的标准测量置信区间活下来”呢？这就是“希望”吗？我们能不能把这个曲线准确地划分区域，从“崩溃”到“悲观”到“现实”到“希望”再到“幻觉”呢？还是说数字就只是数字？我们难道不都曾怀着希望，觉得每个病人都能奇迹般地超越平均值吗？
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?

我发现，当自己成为这个数据中的一员时，我与数据的关系，就完全改变了。
It occurred to me that my relationship with statistics changed as soon as I became one.

住院医生时期，我曾经和无数病人与家属谈过残酷的预后状况：这是一个医生最重要的工作之一。如果这个病人已经九十四岁高龄，痴呆症晚期，严重脑出血，谈起来倒是比较容易。但是像我这样的病人，三十六岁，癌症晚期，那真是不知道说什么好。
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.

医生之所以不跟病人谈具体的预后状况，不仅仅是因为他们不能。当然，如果一个病人的期望实在太不切实际，比如有些人觉得自己能活到一百三十岁，有的又觉得皮肤上长了几个微不足道的斑点就是将死的征兆，那么，医生应该引导他们，让他们的想法变得合理一些。病人们寻求的，不是医生们没说出口的科学知识，而是那种必须靠自己才能获得的稳妥的真切感。过于深入地谈论数据，就像给干渴的人喂太咸的水，无异于饮鸩止渴。面对死亡产生的那种焦虑，远不是数据上的“概率”可以缓解的。
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.

从精子银行回到家，我接了个电话，被告知的确有EGFR突变，可以治疗。谢天谢地，不用去化疗了，我要开始服用特罗凯这种小小的白色药片了。我感觉自己一下子强壮了许多，而且突然有了一丝希望，虽然如今的我已经不太明白“希望”的真正含义。笼罩在我生命周围的迷雾又消散了一点点，露出一线蓝天。接下来的几周，我又有胃口了，体重回升了一些；我长了严重的痤疮，不过这通常代表药效良好。露西一直很喜欢我光滑的皮肤，但现在上面痘疮遍布，再加上我摄入了血液稀释剂，所以这些疮疤总在流血。如果说以前我身上还有些地方称得上“帅气”的话，现在这种气质正在慢慢地流失，不过，公平地说，我宁愿丑一点，也要保命啊。露西说她还和以前一样爱我的皮肤，才不管痤疮什么的呢。然而，尽管我很清楚人的特性不仅来自大脑，但现在也只能完全听大脑的摆布和支配了。那个热爱远足、露营、跑步，会通过热情的拥抱来表达爱意，会把侄女高高抛起逗得她咯咯直笑的男人，已经一去不复返了。我充其量也只能把他作为“奋斗目标”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.