评论
打印
What's the worst that could happen?
最糟糕的情况会是什么？
Almost exactly 10 years ago, I was sitting in an exam room that was way too cold waiting to meet my new oncologist.
大约十年前，我坐在一间很冷的检验室里，等着见我的新肿瘤科医生。
I was terrified. Even though my partner at the time was sitting right by my side, I felt completely alone.
我很害怕，即使我的伴侣就坐在我的身旁，我仍然感到非常孤独。
I had just been diagnosed with breast cancer,
我刚被诊断出乳癌，
and it seemed at the time that a single bright spot on a scan of my right lung meant that the cancer had already spread.
在当时，我右肺部的扫描影像上出现了一个单一的亮点，这就意味着癌细胞已经扩散。
I had metastatic breast cancer. I had no medical training at this point, but I knew what it meant if it were true: incurable breast cancer.
我得的是转移性乳癌。此时的我完全没有受过这方面的医疗训练，但我知道如果这是真的：这将会是无法医治的乳癌。
Terminal breast cancer. I was 27 years old, had just been accepted to medical school, and I wondered if I was already at the end of my life.
乳癌末期。那时的我年仅27岁，刚被医学院录取，却不知道自己是否已经走到了生命的尽头。
My new oncologist was not a warm person. She dealt in simple facts, as many brilliant physicians do.
我的新肿瘤医生并不是一个温暖的人，她就像许多杰出的医生一样，只是简单地陈述事实。
"Our body is made up of cells," she started.
她开始说道："我们的身体是由许多细胞组成的。”
I stopped her. "I'm starting medical school soon. I know."
我打断了她，"我马上要就读医学院了。我知道。”
Instead of taking this as a signal to go backward, to start again, she went forward.
然而，她并没有把这句话当成重新开始对话的信号，而是继续说下去。
She said that I would need to start on chemotherapy to control the cancer.
她告诉我需要开始做化疗来控制癌症。
She launched into the details of the drug and the side effects and the schedule.
她接着仔细向我说明药物及其副作用，和服用药物的时间表。
I reminded her that we hadn't even yet biopsied the bright spot on my lung, and I asked if she was sure that it was cancer.
我提醒她，我们还没有针对肺部的亮点进行活检，所以我问她是否确定那就是癌症。
I remember viscerally how she seemed almost frustrated with my question.
我记得她似乎对我的提问而感到生气。
Perhaps she thought I wasn't following along with her explanations, or, worse still, I was in denial.
也许她认为我没有听从她的解释，又或者，更糟糕的是，我不愿面对现实。
I simply wanted her to understand that, as her patient, the biopsy was not just a mere formality to prove an already foregone conclusion.
我只是希望她能明白，作为她的患者，活检不只是一个证明预料之中的结论的形式。
It was a steel needle through skin, muscle and bone that would deliver a deep piece of me to the surface
它就如同一支钢针刺穿皮肤、肌肉和骨头，让我深处的疑惑浮出表面，
and answer a question I wish didn't have to be asked.
解答一个我希望不需要问的问题。
Before the biopsy, I could be a 27-year-old woman who might have metastatic breast cancer, who probably had metastatic breast cancer.
在进行活检之前，我可能只是一个二十七岁的女人，有可能会得转移性乳癌，也很有可能已经得了转移性乳癌。
This is a critical distinction, but it's not one that's emphasized in the most elite oncology training.
这两者之间有着很关键的区别，但在大部分的精英肿瘤学培训中，并不会强调这样的区别。
Instead, I was dismissed with an appointment to start treatment in just a few weeks. So much has happened since that first visit.
我反而被医生打发走了，并在这几周内开始接受治疗。自从第一次造访后，就开始发生了好多事情。
Ironically, the biopsy was not just a mere formality. My former oncologist was right.
讽刺的是，活检不只是一种形式。前一个肿瘤科医生是对的。
It did show cancer, but it was a totally separate lung cancer, and as crazy as it sounds, this was great news.
检查结果显示的确是肿瘤，但除了乳癌之外还有肺癌，虽然听起来很疯狂，但这算是天大的好消息了。
I did not have metastatic breast cancer, I had two different cancers,
我并没有患上转移性乳癌，我有两种不同的癌症，
but both of them were localized, and so the lung cancer was localized enough that it could be removed.
但两种都是局部性的，只要肺癌的局部性足够大，那就可以将它切除。
And so the onslaught of treatments began with a lung surgery, continued with chemotherapy and ended with a breast surgery just after my 28th birthday.
于是，治疗攻势便从肺部手术开始，接着是连续的化疗，最后则是乳房手术，就在我二十八岁生日之后。
And then two weeks later, I started medical school.
两个礼拜后，我开始就读医学院。
My new oncologist -- who deals much more fluidly both with facts and their implications,
我的新肿瘤科医生--擅长用流畅的方式陈述事实和其后果，
very reasonably suggested that I should defer my acceptance to medical school for a year, take some time to rest, to recover, and I trusted her advice.
非常理性地建议我应该延缓医学院入学一年，多花点时间休息、修养，而我听取了她的建议。
I felt terrible during the intensive chemotherapy sessions. And so I wrote to the dean.
在密集的化疗过程中，我的心情糟透了。于是我写信给医学院院长。
I explained my circumstances, and a deferral was speedily granted.
我向他解释我的情况，于是我的延迟入学申请马上就获得了批准。
But as the chemo fog lifted, I wondered what I was going to do with a year. Should I go to the beach?
随着化疗阴影的消散，我开始思考我这一年的规划，我该去海滩吗？
I wasn't really a beach person. And how many years did I have left, anyway?
其实我并不是一个热爱沙滩的人。然而我还剩下多少年可活？
I really wanted to go to medical school. It seemed like a missing piece of my puzzle.
我真的很想要去医学院读书。它就像我人生拼图中缺失的那一块。
So instead of going around and around with indecision, I asked myself: What's the worst that could happen?
与其一直摇摆不定，我开始自问：“最糟糕的情况会是什么？”
Well, I could be too weak or too sick to do the work. It could be too hard for me emotionally.
我可能会虚弱得无法工作，从情绪上来说，我可能会太辛苦，
I could fail out of medical school. But then I remembered, that wouldn't be the worst thing that happened to me even that year.
我也有可能被医学院退学。紧接着我就想到，这些对我来说都不会是那年我遇过最糟糕的事情。
So why not get started? Why not continue living the way that I wanted to live?
那为何还不开始行动？为何不继续过我想要的生活方式？
So I did. Bald and rail thin, I put on my best earrings and my favorite dress, and I started.
于是我开始行动起来。光头且骨瘦如柴的我戴上了我最好看的耳环，还穿上了我最喜欢的裙子，就这么开始了。
I pretended to belong, and I began to. There is no way to describe how hard it was. Some days it felt impossible.
我假装自己有明确的目标，也切实地开始寻找。这一路的艰难是无法用言语来形容的。有时候，你会觉得自己办不到。
It felt as if I was doing things that would never matter in the future.
感觉自己在做着跟未来毫不相关的事情。
But every day, I asked myself: Are you still enjoying this? Is this still what you want to be doing?
即便如此，我每天都会问自己：“你仍然很享受这一切吗？这仍然是你想做的事情吗？”
And every day, the answer was yes, sometimes a very qualified yes, but a yes.
而每一天的答案都是“是”，有时候是有保留的“是”，但往往都是肯定的。
And then, just as I was getting comfortable and feeling like I might not necessarily fail out of medical school, I received even more devastating news.
当我越来越适应这样的生活后，我开始觉得我不见得会被医学院退学，然而我却收到了更加令我倍受打击的消息。
I learned that I had a mutation in a gene called TP53, or p53 for short.
我得知我体内有一个TP53，或简称p53的基因发生了突变。
Known as the guardian of the genome, a mutation -- p53 is responsible for supervising the repair of our DNA.
这个我们所谓的基因守护者，发生了突变--p53负责监督基因的修复。
A mutation in this gene means errors go uncorrected.
当这个基因发生突变，就表示错误将不会被修正。
It means that normal cells become cancerous at a much higher rate.
这就意味着正常细胞变成癌细胞的可能性将会大大提高。
All of a sudden, with this knowledge, my medical history made a terrible kind of sense.
突然间收到这个消息，再加上我先前的病史，让我感觉糟糕透了。
I had had a childhood cancer -- rhabdomyosarcoma -- at age seven. It recurred when I was a teenager.
我小时候就得过癌症--横纹肌肉瘤--当年的我只有七岁。在青春期时它又复发了。
And this was all before p53 had been discovered in the lab. Then I'd had young adult breast and lung cancers.
这些都是在科研人员发现p53之前的事。然后，我就在青年时期患上了乳癌和肺癌。
With the knowledge of this mutation, it seemed that there was likely no end to the number of cancers that I could expect in my future.
当得知发生了基因突变后，我似乎就能预知，自己在未来将会无止境地罹患癌症。
And yet, I decided to become a radiation oncologist.
然而，我依然决定成为一位放射科肿瘤医生。
I hoped to graduate from residency in just a few months, move to a new city and start my first real job as a doctor and researcher,
我希望我能在几个月内完成实习，搬到一个新的城市，以医生兼研究者的身份开始我的第一份工作，
because of grit, because of privilege, because of therapy, because of my medical teams and my family and my teachers,
因为毅力，因为殊荣，因为治疗，因为我的医疗团队、我的家人、我的老师，
because genetic diagnoses should give us the knowledge to move forward.
因为基因诊断应该带给我们向前迈进的知识。
And even in the year 2020, that generally doesn't mean miracle cures or medical breakthroughs.
即使在2020年，也并不代表会出现奇迹般的治愈或是医学突破。
Having a devastating genetic diagnosis means learning to live with uncertainty.
听到令人大受打击的基因诊断结果，让我学会了接受充满不确定性的生活。
It means learning that you and your diagnosis are not the worst thing that could happen.
这也意味着了解你和你的诊断结果，并不是最糟糕的情况。
Learning to live with uncertainty means walking forward into a life that is as full of beauty as it is of challenges.
学习接受充满不确定性的生活同时也意味着朝着一种挑战和美好并存的人生。
It means learning for yourself that cancer is just part of your story.
要学会告诉你自己，癌症只是你故事中的一部分，
It may not be the worst thing that happens to you, and if it is, that's OK.
它不会是你遇过的最糟糕的事情，就算是，那也没关系。
You can claim that, and you can own that, but let that be a narrative that you author and you authorize, not one that's prescribed to you by someone else.
你可以大方承认并接受事实，让它成为你自己创作且授权的作品，而不是由别人指派给你的。
Have your deferral letter in hand, but use it on your terms.
手里拿着延迟入学信，至于用不用它完全取决于你自己。
As I come to the end of my oncology training, I have déjà vu again and again with the following scenario:
在我快要完成肿瘤学训练的时候，我一而再再而三地碰到似曾相识的情景：
A patient has cancer. There are several options, all of which offer a different balance between cure and quality of life,
一个癌症患者，面临着几项选择，它们提供了治疗和生活质量之间不同程度的平衡，
between the possibility of alleviating suffering and the possibility of causing suffering.
试图在可能减轻痛苦和造成痛苦之间达到平衡。
An oncologist lays out the options, but, somewhere in the discussion, things get skewed.
一位肿瘤科医生列出了几项选择，但却在讨论过程中偏离了主题。
The choice becomes something more like, "Well, you could choose to do something, or you could choose to do nothing.
选择都变成了：“你可以选择做点什么，或者选择什么都不做。
We could be aggressive, and treat your cancer, or we could watch it."
我们可以积极治疗你的癌症，或者置之不理。”
And 9.9 times out of 10, the patient says, "I want to do everything I can do."
10个病人中有9.9个都会说：“什么我都愿意做。”
Of course. Who wouldn't want everything? But what is everything?
当然。谁不会想要一切呢？但什么是一切呢？
Is everything the ability to sit in your own home in front of your window bathed in sunshine and surrounded by family?
一切是指你有能力坐在家中的窗户旁，沐浴在阳光下，身旁有家人的陪伴？
Is everything still being able to feel your fingers and your toes, because they haven't gone numb from chemotherapy?
还是指你还能感受到你的手指和脚趾，因为它们并没有因化疗而变得麻木？
As oncologists, our everything is cancer treatment.
身为肿瘤科医生，我们的一切工作都围绕着癌症治疗。
It's radiation and surgery and chemotherapy and novel treatments.
包括放射、手术、化疗，和新颖的治疗方式。
And for us, the worst thing that could happen -- and I have heard more than one oncologist say this
对于我们而言，最糟糕的事情--而且我听过不只一位肿瘤科医生说过，
the worst thing that could happen is that the patient will develop metastatic disease.
最糟糕的事情莫过于病人发展出了转移性疾病。
Or, the worst thing that could happen is that five years from now, the cancer will grow, and I'll have to give more radiation.
又或者，最糟糕的事情就是现在起的五年后，癌变范围不断地扩大，而我得为更多的病人提供放射性治疗。
As a patient and as an oncologist, I would never argue that these are not devastating outcomes.
身为患者与肿瘤科医生，我绝对不会否认这些都是令人备受打击的结果。
But are they the worst? Should cancer control be at the center of our thinking, always?
然而，它们真的是最糟糕的吗？我们的思想应该一直以控制癌症为中心吗？
Many unspeakably, unfathomably painful and brutal things have happened to me because of my cancers and my genetic mutation.
许多无法言语、无法理解的痛苦，且残忍的事情都接二连三地发生在我身上，全是因为我的癌症和基因突变。
And yet, I consider myself very lucky indeed, because the worst thing that could happen never came to pass;
虽然如此，我还是认为自己是个幸运的人，因为最糟糕的事情始终没有到来；
because I have let devastation and uncertainty sit at the table, but somewhere off to the side.
因为我让打击和不确定性融入了我的人生，但没有让它们阻挡我前进的道路。
When I was diagnosed with metastatic breast cancer, I went to Boston for a second opinion, because what could I lose?
在被诊断出转移性乳癌之后，我前往波士顿进行了二次检查，因为我已经没有什么可失去的了。
When my oncologist gave me very good and very safe and very standard advice,
当我的肿瘤科医生给了我非常好、非常安全且非常标准的建议，
I started medical school anyway, even though I was undergoing active cancer treatment.
我就开始就读医学院，即使我还在接受癌症治疗。
Instead of shying away from patients with cancer, I became a radiation oncologist, and I work with patients who are very much like me every single day.
与其一直试图远离癌症病患，我反而成为了放射性肿瘤科医生，我每天都在工作岗位上接触到和我非常像的病人。
Instead of imagining the suffering that I might cause to a future partner when I died of cancer, I married my wonderful husband.
我并没有去想象，如果我死于癌症，会对我的伴侣造成多大的痛苦，因为我嫁给了我完美的丈夫。
Because the worst thing that can happen is always a series of negatives. It's blank spaces that should be filled with life.
所有最糟糕的事情向来都是一连串的负面想法。所有的空白区域都应该被生活填满。
So what is the most that I have leaned in to this kind of radical uncertainty?
那么在这场充满不确定性的生活里，我最依赖的是什么？
Well, this is William. He is the most joyful person that I have ever met, and in just over a year, he has already made the world a better place.
这是威廉。他是我见过的最快乐的人，在仅仅一年多的时间里，他就已经让我的世界变得更美好。
As oncologists, we talk to our patients as if the worst thing that could happen is that their cancer could come back,
作为肿瘤科医生，我们常和病患说，最糟糕的情况莫过于癌症复发，
or that it could spread, or that they could die from it.
或者是癌症扩散，又或者会因癌症而死去。
As a patient, I know that these are paramount.
作为一个病人，我知道这些都是最重要的。
But I want to change the way that we think about this, and I want to change the way that we talk about this with our patients.
但我仍然想改变我们在这方面的想法，我想要改变我们和病人交谈的方式。
As a patient, the worst thing that can happen is that cancer robs you of opportunity, of the ability to be and to do and to love.
身为一个病人，最糟糕的事情就是癌症夺走了你的机会，夺走你活下去的能力，夺走你做事情的能力、更夺走了你去爱的能力。
And it will. At least temporarily it will.
它的确会夺走这些，至少是暂时性的。
But to minimize this loss of life in the living, that is the harder, and I would say, truer job of the oncologist:
但我想说的是，把患者生命中的损失降到最小，是肿瘤科医生最困难，也是最真实的工作：
to take all the tools that we have and situate them in the context of a patient's whole entire life;
拿出我们所有的工具，把它们用在病人的一生中；
to be guides for how to sit with suffering, acknowledge it deeply, but to not let fear of future suffering be the narrative for the journey forward.
引导他们如何应对痛苦，在内心深处接受它，但不要让前进的旅程充满对未来痛苦的恐惧。
One of my mentors always says the medicine part is easy.
我的一位导师总说，医学部分是简单的。
And it never feels that way to a junior doctor, but its contours are finite.
但对于新手医生来说，从来都不是那回事，但它的难度是有限的。
We have big studies to guide us, and it's what we learn to do in residency.
我们有大量的研究来引导我们，这也是我们在实习期间所学会的。
Much harder is learning how to help each patient navigate the multitudes contained in their illness.
更困难的是学习如何帮助每位病人在多重病痛中找到方向。
So I find it really funny that, in retrospect, my life looks like a neat package.
回想起来，我觉得最有趣的是，我的人生看起来就像一系列井然有序的计划。
It looks as if I planned each successive step and that perhaps cancer has led to the good things in my life.
看起来就像我规划着成功的每一步，也有可能是癌症带来了我人生中的美好。
Step one: apply to medical school. Step two: get diagnosed with and treated for cancer. And step three: have it all, a career and a family.
第一步：申请医学院。第二步：被诊断出癌症并接受治疗。第三步：心想事成，事业家庭两得意。
But I will tell you that each phase was a leap of faith despite an almost paralyzing uncertainty.
但我想告诉你的是，每个人生阶段都是信念的飞跃，而不是一味气馁地面对不确定性。
And so it's that courage that I try to give to each of my patients.
而我想把这样的勇气给予我的每一位病人。
I try to do this regardless of the technical medical details of cancers and treatment decisions and mutations,
我尝试不在意癌症治疗技术层面的细节、方案以及突变，
regardless of the slippery fiction of prognosis.
不去在意预后的不确定性。
I try to learn what they want and what they need, what they wish and what they worry, what they dream about,
我试着去了解他们想要什么、他们需要什么，他们希望什么、他们担心什么，他们梦想着什么，
what animated them before and what will sustain them during the beastly process of cancer treatment.
之前带给他们的动力是什么，而这份动力将转化为支持他们迎接癌症治疗的力量。
It doesn't actually take that much time. It does take a few focused, quiet moments that require intentional cultivation.
其实这样的做法并不会很耗时。这的确需要投入一点专注、安静的时刻，而这些时刻是需要刻意营造的。
But this is partnership, and it matters, because the worst thing that can happen
但这种配合是有意义的，因为最糟糕的事情就是
is to have an oncologist who does everything -- everything -- to help cure your cancer and who does nothing to help you live your life. Thank you.
一位肿瘤科医生竭尽全力去医治你的癌症，却完全不在意是否能帮助你活出自己的人生。谢谢。
