勇敢患者的分享：得了乳腺癌是什么体验

I've been keeping a secret.

之前一直瞒着。

I've decided to tell it.

如今我打算把它说出来了。

I have metastatic breast cancer, MBC, stage 4.

我有转移性乳腺癌，MBC, 已经4期了。

That means the breast cancer has spread to my lungs, bones and brain.

意思就是乳腺癌细胞已经扩散到了我的肺部，骨骼和大脑。

There is no cure.

药石无灵了。

Eventually, it kills you.

最终难逃一死。

Actually, I've had it for two years.

实际上，我得这个病已经两年了。

Keeping it secret served me well.

隐瞒病情倒让我过得轻松些。

I didn't have to explain myself to friends and strangers while I was still in the hysterical stage.

当我情绪陷入歇斯底里的时候，我不必向朋友和陌生人解释什么。

Because, faced with an incurable cancer diagnosis, I did what any normal person would do: I stopped sleeping.

因为，面临这种不治之症，我的反应跟所有正常人一样：失眠了。

I stopped eating.

东西也不吃了。

I sobbed a lot.

不停地哭。

I was grieving for my own life.

懊悔自己的人生。

But I had to tell someone, so I told 50 of my closest friends.

但我还是得说，于是我就告诉了五十个最亲密的朋友。

Also, since I'm a correspondent for NPR, I told my three editors.

此外，因为我是美国国家公共电台的记者，所以我告诉了我的三位编辑。

They've kept my secret.

他们也替我保了密。

That's not easy to do in a newsroom filled with gossips.

在一个充满流言蜚语的新闻编辑室里做到这一点可不容易。

I'm incredibly grateful.

对此，我尤为感激。

Meanwhile, I had a chance to get used to working in my new normal.

与此同时，我也有了机会去适应我的新常态。

Frankly, it was a lot like my old normal, only with more medical appointments.

坦白说，这和我以前的正常生活很像，只是多了些医疗预约。

By the way, I have no issue with people who want to keep their cancer diagnosis a secret to the end.

顺便说一句，我对那些想把自己的癌症诊断保密到最后的人没有意见。

If you have the misfortune to have cancer, you get to have it any way you want.

如果你不幸患上了癌症，你想怎样就怎样。

If you can.

如果能瞒得住的话。

I've had a titanium rod implanted in my thigh to deal with a bone metastasis.

我的大腿里植入了一根钛棒来治疗骨转移的癌细胞。

That would not have been my choice.

我本来不想这样做的。

The weirdest thing has been recovery from brain radiation.

最奇怪的感觉就是做完脑部辐射之后的恢复过程。

It turns you into a bit of a zombie.

它会让你变得像僵尸一样。

But then you get better.

但最后还是会好起来的。

Just really slowly.

只不过很慢。

My fingers on my left hand are still numb.

我左手的手指仍然感觉很麻木。

My balance has deserted me.

身体也丧失了平衡感。

I meander around like a drunken bug.

我像一只喝醉酒的虫子一样跌跌撞撞。

I've decided to tell my secret for two reasons.

我之所以打算说出我的秘密有两个原因。

The first is that I realized that much of my initial despair was based on bad information.

第一点就是，我意识到，我最初的很多绝望其实是受了错误信息的影响。

I was wrong about almost everything.

我的很多理解都是错的。

So maybe my confession will shorten the Despair Phase for others.

所以也许我说出来之后可以帮助别的患者减少他们的绝望期。

The second reason is much more in my wheelhouse as a journalist: outrage.

第二个原因是身为记者的一种愤怒感。

I'll get to that in a moment.

第二点我等会儿再说。

But first, my mistakes.

首先来说说我之前的一些错误观念。

I thought metastatic breast cancer was fairly rare.

我原以为我的转移性乳腺癌是很罕见的。

Nope.

其实并不是。

Up to 30% of women with early stage breast cancer progress to stage 4.

有30%的早期乳腺癌患者都会发展到4期。

I thought that you were more likely to get metastatic breast cancer if you'd been diagnosed with a more-advanced stage of breast cancer to begin with.

我认为如果你一开始就被诊断出患有晚期乳腺癌你就更有可能患上转移性乳腺癌。

Wrong again.

也不对。

It's not dependent on your stage at original diagnosis.

这种癌症跟你最初诊断时处于哪一个时期也没有关系。

I was stage 1B when I was first diagnosed in January 2012.

2012年1月，我第一次被诊断为乳腺癌1B期。

I thought it was my fault.

我原以为是我的错。

Maybe I drank too much (I didn't).

也许怪我喝酒喝太多。（其实并没有）

Or gained too much weight (I hadn't).

又或者太胖了。（其实也没有）

Those are among many factors that can influence whether you get breast cancer initially.

这些都是影响你是否一开始就得乳腺癌的诸多因素之一。

But no one is sure what causes metastases.

但没人能确定到底是什么引发了转移性乳腺癌。

So again, wrong, wrong, wrong.

所以，一直以来我都错了。

Unfortunately, I did have something mostly right.

不幸的是，我还是搞对了一件事的。

The five-year relative survival rate is about 1 in 4.

那就是这种癌症的五年存活率大概是四分之一。

And it's worse for Black women.

在黑人女性中存活率更低。

Due to the types of cancers that they get, African American women have the highest breast cancer mortality rate of any U.S. racial or ethnic group, at 26.8 per 100,000 annually.

根据她们所患的癌症的不同类型，非洲裔美国妇女的乳腺癌死亡率在美国任何种族或民族中都是最高的，每年每10万人中有26.8人死于乳腺癌。

All of these things were painful to realize because I'd been planning on becoming a really cool old lady.

认识到这一切是很痛苦的，因为我一直计划着想将来成为一名很酷的老太太。

While covering aging for NPR, I'd met so many inspirational elders that I wanted to be one of them.

在为美国国家公共电台报道老年人问题时，我遇到了很多有感召力的长者，我想成为他们中的一员。

This diagnosis doesn't mean I won't be.

这次诊断也不能断定我就一定不能实现梦想了。

There are outliers, as they're called.

也有他们所谓的例外者。

People who live 10 years or more with stage 4.

也有过那种4期的患者活过十年的。

Mark Burkard at the University of Wisconsin Carbone Cancer Center is studying them to see what they might have in common.

威斯康星大学卡本癌症中心的马克·伯克德正在研究这样的人，看看她们可能有什么共同之处。

So far, it's too early to draw conclusions.

所以，目前下定论还为时过早。

Which brings us back to the primary reason for disclosing my secret: outrage.

接下来就是我公布自己的秘密最重要的理由：愤怒。

As I began to research metastatic breast cancer, I came across the stunning statistic that only 7% of funding for breast cancer research is devoted to metastatic disease.

当我开始研究转移性乳腺癌时，我看到了一个惊人的数据:只有7%的乳腺癌研究资金用于转移性疾病的研究。

Did I mention that this is the kind that kills you?

我有提过吧，这种病可是致命的呀？

This figure is from a multiyear study (2000 to 2013) from the Metastatic Breast Cancer Alliance.

该数据来自转移性乳腺癌联盟(转移性乳腺癌联盟)的一项多年研究(2000年至2013年)。

Shirley Mertz, the former president, says the alliance plans to repeat the study beginning this year.

前主席雪莉·默茨表示，该联盟计划从今年开始再次进行这项研究。

"There is anticipation that the percentage will have improved," says Mertz.

默茨说:“预计这一比例将有所提高。”

"But we will not know by how much until the analysis is carefully completed."

“但在仔细完成分析之前，我们不知道具体有多少。”

So, at this point, you might be wondering how many people have metastatic breast cancer.

所以，这个适合，你可能很想知道到底有多少人患有转移性乳腺癌。

We know how many people die of MBC.

我们知道的是有多少人已经死于转移性乳腺癌。

Approximately 44,000 a year in the U.S.

每年在美国大概是44,000人。

But we don't know for sure how many (mostly) women and (some) men are living with it now.

但我们不知道的是如今还活着的人里有多少男性和女性正患有这种病。

A 2020 National Cancer Institute study estimates that 168,000 women in the U.S. are living with metastatic breast cancer.

美国国家癌症研究所2020年的一项研究估计，美国有16.8万名女性患有转移性乳腺癌。

Meanwhile, in case you were wondering, I feel fine.

同时，如果你好奇的话，我目前感觉挺好的。

The only discomfort I have is the result of my treatments.

我唯一感到不快的是我治疗的结果。

I have no pain from the cancer itself.

这个癌症本身并没有让我感到痛苦。

I know that's coming.

我知道将来肯定会有病痛的感觉。

I'm just not sure when.

只是不知道什么时候开始。

In normal times, I would be taking all those bucket list trips.

正常情况下，我会去做那些遗愿清单上的旅行。

Obviously, these are not normal times.

不过显然，根本就没有什么正常时间了。

I've barely left my house except for walks around the neighborhood.

除了在家周围走一走，我几乎足不出户。

Most people think of just writing this past year off and picking up again when everyone gets vaccinated, but that's not easily done when you have a shorter timeline.

大部分人可能以为把过去的一年写下来，然后看到别人都去接种疫苗了，再重新开始写，但当你的生命所剩时间有限的时候要做到并不容易。

You know there's no way to ever make up for this year.

你知道一旦错过今年之后很可能将无法弥补。

Really, there's no way to make up for lost time for any year.

真的，人生中的任何一年都是无法弥补的。

Cancer patients and others with short timelines are just never allowed to forget that.

癌症患者和其他时日无多的病人他们是没法遗忘这一点的。

Or to stop wondering why only 7% of breast cancer research funding is dedicated to finding a cure for metastatic breast cancer.

她们也无法忘记，为什么只拿出7%的乳腺癌研究资金来研究如何治疗转移性乳腺癌。

Question

问题

文中提到用于研究MBC的资金比例是多少？

留言回复正确答案，前五名朋友可以获得红包奖励哦，赶快来试试吧！

感谢关注

跟Amber一起看世界