that we're here to talk about the year of patients rising.

太神奇了，我們能在這裡談談

You heard stories earlier today

病人崛起年。

about patients who are taking control of their cases,

稍早你們已經聽過

patients who are saying,

有些病人現在能掌控住自己的病情

"You know what, I know what the odds are,

有些病人說：你知道嗎，我知道我有多小的機會，

but I'm going to look for more information.

但我要去找尋更多資訊

I'm going to define what the terms of my success are."

我將要闡述

I'm going to be sharing with you how, four years ago, I almost died --

我自己的成功

found out I was, in fact, already almost dead --

我即將和你們分享

and what I then found out

我如何在四年前幾乎要死掉時

about what's called the e-Patient movement.

發現我其實

I'll explain what that term means.

已經幾乎死了

I had been blogging under the name "Patient Dave,"

在那時我也發現所謂的e-病人運動--

and when I discovered this,

我等會解釋我所謂的成功是什麼

I just renamed myself e-Patient Dave.

我一直以病人戴維的稱號寫部落格

Regarding the word "patient":

當我發現這樣的事情之後 (e-病人)

When I first started a few years ago getting involved in health care

我就改名為e-病人戴維

and attending meetings as just a casual observer,

關於「病人」這個字，

I noticed that people would talk about patients

當我幾年前一開始

as if it was somebody who's not in the room here --

參與健康關懷

somebody out there.

以一個非正式的觀察者參加會議時

Some of our talks today, we still act like that.

我注意到人們談論到病人的感覺

But I'm here to tell you:

好像這個人不在現場似的

"patient" is not a third-person word.

是某個事不關己的人

All right?

今天某些演講還是用這種態度

You yourself will find yourself in a hospital bed --

但我要告訴你們

or your mother, your child --

病人並不是一個第三者

there are heads nodding, people who say,

你自己

"Yes, I know exactly what you mean."

有天也會躺在醫院裡

So when you hear what I'm going to talk about here today,

或者你的母親和小孩

first of all, I want to say that I am here

有些人在點頭說「沒錯，我感同身受。」

on behalf of all the patients that I have ever met,

所以當你聽到我今天要談論的

all the ones I haven't met.

首先，我想要說

This is about letting patients play a more active role

我僅代表

in helping health care, in fixing health care.

所有我遇過的

One of the senior doctors at my hospital,

以及我未曾遇過的病人

Charlie Safran, and his colleague, Warner Slack,

為了讓病人們扮演一個更積極的角色

have been saying for decades

在幫助及修復健康關懷方面

that the most underutilized resource in all of health care

在我醫院裡的一個前輩醫生

is the patient.

Charlie Safran以及他的同事Warner Slack

They have been saying that since the 1970s.

數十年來一直宣導的

Now, I'm going to step back in history.

在所有健康關懷的資源裡最沒有被充分利用的

This is from July, 1969.

就是病人

I was a freshman in college,

他們從1970年代就一直再宣導這個

and this was when we first landed on the Moon.

現在我要重回歷史

And it was the first time

在1969年的7月

we had ever seen from another surface --

我那時是大學新鮮人

that's the place where you and I are right now,

那時也是人類第一次登陸地球

where we live.

那是第一次

The world was changing.

我們得以從另一個地表看地球

It was about to change in ways that nobody could foresee.

就是你和我現在的所在

A few weeks later, Woodstock happened.

我們住的地方

Three days of fun and music.

當時那個世界正在改變

Here, just for historical authenticity,

它即將以無人能預知的方式改變

is a picture of me in that year.

幾個星期後

(Laughter)

伍德斯托克音樂節發生了

Yeah, the wavy hair, the blue eyes --

整整三天的音樂和樂趣

it was really something.

為了考據這歷史的真實性

That fall of 1969,

這有一張我當年的照片

the Whole Earth Catalog came out.

(笑聲)

It was a hippie journal of self-sufficiency.

對，波浪捲和藍眼睛

We think of hippies of being just hedonists,

蠻酷的

but there's a very strong component -- I was in that movement --

1969年的秋天

a very strong component of being responsible for yourself.

美國次文化期刊發行了

This book's title's subtitle is "Access to Tools."

它是一本自給自足的嬉皮雜誌

It talked about how to build your own house,

我們以為嬉皮只是享樂主義者

how to grow your own food, all kinds of things.

但其中有一個很重要的元素，我自己參與過那一場運動

In the 1980s,

一個很重要的元素

this young doctor, Tom Ferguson,

就是對自己負責

was the medical editor of the Whole Earth Catalog.

這本書標題中的副標題

He saw that the great majority of what we do in medicine and health care

是接近工具

is taking care of ourselves.

它談論到如何建造自己的房子

In fact, he said it was 70 to 80 percent

如何栽種自己的食物和所有其他東西

of how we actually take care of our bodies.

在1980年代

Well, he also saw that when health care turns to medical care

醫生Tom Ferguson

because of a more serious disease,

是美國次文化期刊的醫療編輯

the key thing that holds us back is access to information.

他發現大部分

And when the Web came along, that changed everything,

我們在醫藥和健康醫護上

because not only could we find information,

主要是照顧我們自己

we could find other people like ourselves

事實上，他說是有百分之七十至八十

who could gather, who could bring us information.

我們真正照顧自己的身體

And he coined this term "e-Patients" --

而且他也看到

equipped, engaged, empowered, enabled.

當健康關懷轉到醫療關懷時

Obviously, at this stage of life

因為一個更嚴重的疾病

he was in a somewhat more dignified form than he was back then.

主要阻止我們的是資料的取得性

Now, I was an engaged patient long before I ever heard of the term.

當網路時代來臨時，一切都改變了

In 2006, I went to my doctor for a regular physical,

因為不只我們能找到資訊

and I had said, "I have a sore shoulder."

我們也能找到有相同狀況的病人

Well, I got an X-ray,

可以聚在一起，互相提供資訊

and the next morning --

他可以加入e-病人的行列

you may have noticed, those of you who have been through a medical crisis

有裝備，能專心一致，賦予力量，有能力了

will understand this.

明顯地，在此人生階段

This morning, some of the speakers named the date when they found out

他比之前更有尊嚴

about their condition.

我是一個專心從事此工作的病人

For me, it was 9am

而且早在我聽過這個專有名詞之前

on January 3, 2007.

2006年時，我為了一個例行檢查去看醫生

I was at the office; my desk was clean.

我說我肩膀痠痛

I had the blue partition carpet on the walls.

然後就照了X光

The phone rang and it was my doctor.

隔天早上

He said, "Dave, I pulled up the X-ray image

你可能已經發現，尤其是你們之中曾經經歷醫療危機的人

on the screen on the computer at home."

就能體會

He said, "Your shoulder is going to be fine,

這個早晨，有些講者

but Dave, there's something in your lung."

把發現病情狀況的日期時間表明出來

And if you look in that red oval,

我的是早上9點

that shadow was not supposed to be there.

2007年，1月3日

To make a long story short,

我在辦公室裡，桌上很乾淨

I said, "So you need me to get back in there?"

牆上有藍色的隔間毯

He said, "Yeah, we're going to need to do a CT scan of your chest."

電話響了，是我的醫生打的

In parting, I said, "Is there anything I should do?"

他說，戴維，我把X光片拉開

He said -- think about this one,

放在家裡的電腦螢幕上

this is the advice your doctor gives you:

他說，你的肩膀沒事

"Just go home and have a glass of wine with your wife."

但是戴維你的肺裡有東西

I went in for the CAT scan.

如果你看一下那個紅色橢圓物

It turns out there were five of these things in both my lungs.

那邊不應該有那種陰影物

So at that point we knew that it was cancer.

長話短說

We knew it wasn't lung cancer.

所以我得回去醫院嗎?

That meant it was metastasized from somewhere.

他說，是，我們需要幫你的胸部做個電腦斷層掃描

The question was, where from?

而且告別前我說"我應該做什麼嗎?"

So I went in for an ultrasound.

他說，考慮一下這個

I got to do what many women have --

這是你的醫生的良心建議

the jelly on the belly and the, "Bzzzz!"

回家和你老婆喝杯酒吧

My wife came with me.

我進去做電腦斷層掃描

She's a veterinarian,

結果我兩邊的肺部總共有五個這些東西

so she's seen lots of ultrasounds.

所以那時我們就知道那是癌症

I mean, she knows I'm not a dog.

我們知道那不是肺癌

(Laughter)

它是從別處轉移過來的

This is an MRI image.

問題是從哪裡來?

This is much sharper than an ultrasound would be.

所以我去照了超音波

What we saw in that kidney

我必須做很多女人做的一樣

was that big blob there.

在腹部上塗上膠凍然後滋滋...

There were actually two of these: one was growing out the front

我老婆和我一起去的

and had already erupted and latched onto the bowel.

他是一個獸醫

One was growing out the back and it attached to the psoas muscle,

所以她看了很多超音波

which is a big muscle in the back that I'd never heard of,

我的意思是他知道我不是隻狗

but all of a sudden I cared about it.

但是我們看到的，這是個核磁共振攝影

(Laughter)

這筆超音波清楚多了

I went home.

我們在腎臟裡看到的

Now, I've been Googling --

是那邊的球狀物

I've been online since 1989, on CompuServe.

而且實際上還有兩個

I went home, and I know you can't read the details here;

一個長在前面，而且已經爆發

that's not important.

深藏在腸子裡

My point is, I went to a respected medical website, WebMD,

一個長在背面，黏在比目魚肌上

because I know how to filter out junk.

這是一個我未曾聽聞的背部大肌肉

I also found my wife online.

但是突然間我在意起它來

Before I met her,

我回家

I went through some suboptimal search results.

我一直在網路上搜詢資料，自從1989年起我就透過Compuserve上網

(Laughter)

我回家去，我知道不能在這裡讀到詳細資訊

So I looked for quality information.

那不重要

There's so much about trust --

我的重點是我去了一間很受尊重的醫學網站

what sources of information can we trust?

WebMD

Where does my body end and an invader start?

因為我知道如何過濾垃圾訊息

A cancer, a tumor, is something you grow out of your own tissue.

我也在網路上找到老婆

How does that happen?

遇到她之前

Where does medical ability end and start?

我瀏覽了一些未達理想的搜尋結果

Well, so what I read on WebMD:

(笑聲)

"The prognosis is poor for progressing renal cell cancer.

所以我尋找有品質的資訊

Almost all patients are incurable."

這跟信任有很大的關係

I've been online long enough to know if I don't like the first results I get,

我們能信任什麼樣的來源的資訊呢

I go look for more.

我的身體極限在哪裡

And what I found on other websites was,

侵略者從何開始

even by the third page of Google results:

癌症和腫瘤是從你自己的組織長出來的

"Outlook is bleak."

那是如何發生的?

"Prognosis is grim."

醫療的能耐從哪裡

And I'm thinking, "What the heck?"

結束和開始?

I didn't feel sick at all.

所以我從WebMD讀到

I mean, I'd been getting tired in the evening,

病情結果預測不好

but I was 56 years old, you know?

對進行中的腎組織癌症來說

I was slowly losing weight,

幾乎大部分的病人都是無法治癒的

but for me, that was what the doctor told me to do.

我的網路經驗多到知道

It was really something.

如果我不喜歡第一個搜尋結果

And this is the diagram of stage 4 kidney cancer

我就繼續找更多

from the drug I eventually got.

而我找到的是在另一個網站

Totally by coincidence, there's that thing in my lung.

還是在Google搜尋的第三頁裡

In the left femur, the left thigh bone, there's another one.

前景堪慮

I had one. My leg eventually snapped.

病情預測嚴酷

I fainted and landed on it, and it broke.

但我卻在想著，搞什麼鬼

There's one in the skull,

我一點也不覺得病了

and then for good measure, I had these other tumors,

我意思是說，我晚上會感到累

including, by the time my treatment started,

但我已經五十歲了啊

one was growing out of my tongue.

我的體重慢慢下降

I had kidney cancer growing out of my tongue.

但是對我來說，是醫生叫我這樣做的

And what I read

這真是很酷

was that my median survival was 24 weeks.

這是腎臟癌第四期的圖表

This was bad.

最終我終於從我吃的藥得到

I was facing the grave.

完全是巧合，在我肺裡有那東西

I thought, "What's my mother's face going to look like

在左邊的股骨，左邊的大腿骨，有另一個

on the day of my funeral?"

我曾經有過一個，我的腿最後斷裂了

I had to sit down with my daughter and say, "Here's the situation."

我昏倒然後倒在腳上，然後就斷了

Her boyfriend was with her.

頭骨裡也有一個

I said, "I don't want you guys to get married prematurely,

然後為了好的測量，我還有其他腫瘤

just so you can do it while Dad's still alive."

包括在內，就在我的治療開始時

It's really serious.

我的舌頭長出了一個

If you wonder why patients are motivated and want to help,

我的舌頭長出了腎臟瘤

think about this.

我讀到的剩下的日子

Well, my doctor prescribed a patient community, ACOR.org,

是24周

a network of cancer patients, of all amazing things.

這真糟

Very quickly they told me,

我快死了

"Kidney cancer is an uncommon disease.

我想，我媽到時候看起來會如何

Get yourself to a specialist center.

在我的喪禮那天

There is no cure, but there's something that sometimes works --

我必須和我女兒坐下來

it usually doesn't --

說「情況是這樣」

called high-dosage interleukin.

她男友和她一起

Most hospitals don't offer it,

我說我不希望你們太早結婚

so they won't even tell you it exists.

只是希望你們能在爸爸還在時結婚

Don't let them give you anything else first.

這真的很嚴肅

And by the way, here are four doctors in your part of the United States

因為如果你覺得奇怪為什麼病人會主動幫忙

who offer it, and their phone numbers."

這樣想吧

How amazing is that?

我的醫生開給我的處方是一個病人社群

(Applause)

Acor組織網站

Here's the thing:

一個有著各種好東西的癌症病人網站

Here we are, four years later --

他們很快地告訴我

you can't find a website that gives patients that information.

腎臟癌是一個罕見的疾病

Government-approved, American Cancer Society,

趕快去找一個專家中心

but patients know what patients want to know.

雖然沒有治癒方法，但是有時候還是有些有用的東西--

It's the power of patient networks.

通常是沒用的--

This amazing substance -- again, I mentioned:

叫做高劑量白細胞介素

Where does my body end?

大部分醫院沒有提供

My oncologist and I talk a lot these days

所以他們甚至不會告訴你有這種東西

because I try to keep my talks technically accurate.

而且不要讓他們先給你任何其他東西

And he said, "You know, the immune system is good at detecting invaders,

順道一提，有四個醫生

bacteria coming from outside,

在你住的美國區域裡，他們提供這種藥還有他們的電話

but when it's your own tissue that you've grown,

是不是很棒?

it's a whole different thing."

(鼓掌)

And I went through a mental exercise, actually,

問題是

because I started a patient support community of my own on a website,

四年後的現在

and one of my friends -- one of my relatives, actually -- said,

你找不到提供病人這個訊息的網站

"Look, Dave, who grew this thing?

政府核准的，美國癌症社群

Are you going to set yourself up as mentally attacking yourself?"

但是病人知道病人想知道的

So we went into it.

這是病人網絡的力量

The story of how all that happened is in the book.

這個驚人實體

Anyway, this is the way the numbers unfolded.

再提到我之前說過的，我的身體的極限在哪裡?

Me being me, I put the numbers from my hospital's website,

這些日子以來，我的腫瘤學家和我談了很多。

for my tumor sizes,

因為我試著讓我的演講技術上是正確的

into a spreadsheet.

他說，你知道吧，免疫系統

Don't worry about the numbers.

很擅長偵測入侵者

You see, that's the immune system.

細菌是從外面來的

Amazing thing, those two yellow lines

但如果長得是自己的身體組織

are where I got the two doses of interleukin two months apart.

那就完全是另一回事了

And look at how the tumor sizes plummeted in between.

實際上我經歷了一場心理運動

Just incredible.

因為我自己開了一個病人支持社群

Who knows what we'll be able to do when we learn to make more use of it?