兰迪.波许的的抗癌网志
In Sept. of 2006, I was diagnosed with pancreatic cancer. Thanks to everyone who has done so much to help me and my family.
在2006年9月我被最终确诊为胰腺癌。真心感谢每一位对我家人和我的莫大帮助。
If you're new to this page, here's a short summary of the adventure . A chinese translation of the summary is here.
如果你是初次访问本网志,也可以参考这里的抗癌历程摘要。
A Chinese translation of this page has been provided, courtesy of a team in China (contact person: Tao Yuting) - thanks! it's here. Another Chinese translation, by Lichao Chen and Kathy E. Jiang), is here. A German translation by Lisi Driner (thanks!) is here.
| Randy Pausch| 1960-2008 兰迪.波许|1960-2008 |
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Randy Pausch passed away on Friday, July 25, 2008. 兰迪.波许于昨日(7/25/2008)凌晨4时去世,享年47岁。 |
| July 25th, 2008 2008年7月25日 |
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Randy died this morning of complications from pancreatic cancer.
The CMU news story is
here
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| July 24th, 2008: The cancer is progressing
2008年7月24日:癌症扩展 |
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A biopsy last week revealed that the cancer has progresed further than we had thought from recent PETscans. Since last week, Randy has also taken a step down and is much sicker than he had been. He's now enrolled in hospice. He's no longer able to post here so I'm a friend posting on his behalf because we know that many folks are watching this space for updates. 上周活检发现肿瘤扩展得比我们原先从最近的正电子影像扫描结果判断的还要广 。自上周 来,兰迪走了下坡路病加重了很多。他现已入善终安宁疗护。他已不再再发贴,我是一个朋友代他发贴因为我们知道,许多人都来这里看更新。 | |
| June 26th, 2008: Slow, but continued recovery 2008年6月26日:缓慢,但继续在恢复 |
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I continue to slowly recover. Chemotherapy has a cumulative effect, so it takes longer to recover the deeper one gets into this. Our current thinking is that more chemotherapy may not be wise; at this point, almost all potential chemotherapies may potentially make me so weak/sick that even if they were to slow the tumor, it would not be clear it would be the right tradeoff. We are currently narrowing down some immunuotherapy-based apporaches that would presumably come with little or no side effects. More news as that proceeds. 我继续缓慢恢复。化疗有一个累积效应,所以做得越多,要恢复的时间也越长。 |
Today's box score: Creatanine (kidney function): 2.2 CA19-9 (tumor marker): 1400 Blood Pressure: 120 / 70 Weight: 142
今天的记分板: 体重: 142 |
| June 15, 2008: A Great Father's Day 2008年6月15日:快意父亲节 |
We had a great day here at the Pausch household; the kids made matching tie-dye shirts for me and them (note! Tie-dye stays on skin quite a while!). I'll try to get a photo up shortly. Health-wise, I'm slowly bouncing back from the last round of chemo. Last Thursday's PET scan showed that the cancer continues to grow, but is still more restrained in its rate of growth than it might be, which is good. 我们家过了一个很棒的一天,孩子们为我和他们做提匹配的扎染衬衫,(注!扎染在皮肤上会呆挺长时间! ) 。我会争取不久就传张照片上来。
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| June 10th, 2008: A Letter from President Bush 2008年6月10日: 布什总统的信 |
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While I don't have any way of validating it authenticity, nor do I have an particular reson to do doubt it - this arrived recently (click on letter for larger, readable image.)
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| May 28th, 2008: Chemo works out poorly 2008年5月28日:化疗反应不佳 |
Well, I ran 101 fever for three days, did a bunch of vomiting, and was too sick to really get out of bed for 5 or 6 days. Needless to say, that chemo isn't our winning combination. Back to the drawing board... 啊,我发了三天高烧,呕吐多次,病倒在床5,6天。不消说,这个化疗不对路, 重新开始... |
| May 20th, 2008: Return to chemo 2008年5月20日:重回化疗 |
We tried a new regimen today: (eribitux + ironotecan). Blood pressure has now been undercontrol nicely and we figured I was strong enough to give it a try. 我们试了新的配伍: (西妥昔单抗 + 依利替康 ) 。血压现已控制的很好,我们想我身体已经能够接受化疗了。 |
| May 18th, 2008: A perfect day! 2008年5月18日:完美的一天! |
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Everyone should have a day this perfect in their lives. Carnegie Mellon flew Jai and me up to Pittsburgh to attend graduation. I had the honor of giving the charge to the graduates at the end of the ceremony. Even the weather cooperated to make it a perfect day with the sun breaking through the rain clouds as the ceremony started. I also got to speak briefly to the SCS and ETC commencement ceremonies. It was wonderful to see all of our old friends and colleagues and I was very touched by the invitation. My three minute address and dramatic ending ----------------> 每个人的生命中都应该有个如此完美的一天。卡内基梅隆大学用飞机接我和洁到匹兹堡参加毕业典礼。我很荣幸的在典礼最后向毕业生做了赠言。甚至老天也合作,仪式开始时太阳便穿云而出。我也到计算机学院和娱乐科技中心的毕业仪式做了简短发言。见到那么多同事和老朋友的感觉真是好极了,我也很感激我能被邀请。 |
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| May 13th, 2008: Strength slowly returning 2008年5月13日:体力慢慢恢复 |
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I'm sorry I haven't posted much recently; there just hasn't been too much notable going on. Mostly, I'm resting and rebuilding strength. Today has been my best day in a while; I took at 2 hour nap in the afternoon, but other that that have been up and active all day. 抱歉最近没有多更新,主要是没什么大变化。大多是休息和恢复体力。今天我最近以来最好的一天,我下午睡了2小时,但其它时间都起来在活动。 |
Today's box score: Creatanine (kidney function): 2.8 CA19-9 (tumor marker): 634 Blood Pressure: 135 / 85 今天的记分板: |
| May 10th, 2008: Vroom! 2008年5月10日: 嗡轰! |
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For Mother's Day, we managed to arrange to have Jai get away for a night in a local hotel, where she was able to sleep in until 9am; a truly rare treat for a mother of three little kids! We also took a spin in a "kit car" of a 1965 Shelby Cobra. 母亲节,我们让洁在当地酒店脱身住了一晚,她在那里睡到早上九时;对一个有三个小孩的妈妈来说是真正难得的礼物! |
| May 2nd, 2008: Cancer spreads 2008年5月2日:癌症蔓延 |
Yesterday's PET scan showed that I have very tiny (5mm or less) metastases in my lungs and some lymph nodes in my chest. I also have some metastases in my peritoneum and retroperitoneum cavities (basically, inside my abdomen). This is unfortunate, but we knew it would happen sooner or later, and we've been able to stave it off much longer than anticipated, so I'm very grateful for that. My current strategy is to continue to recover from the heart and kidney failure, and once I'm strong enough, then we'll either do the SIR-Spheres or some systemic chemo, depending on the relative growth of the liver and non-liver tumors. 昨天的正电子影像扫描表明,我的肺和一些胸部淋巴结有很小(
5毫米或以下)的转移灶。在我的腹膜及腹膜腔(就是在我的肚子里)也有一些转移, 。 |
| April 28, 2008: Time Management Lecture #1 on Google!! 2008年4月28日:"时间管理" 讲座一路谷歌 |
This may seem weird, but the lecture I'm personally most proud of is a lecture on "Time Management" I've given for many years. With much help from Gabe Robins, I had a nice video of it made last fall at the University of Virginia, and we've made that video available for anyone to use for any purpose, commercial or otherwise. It's on Google Video. I am insanely proud that if you type "time management" into Google, there are 50 million relevant pages, but that lecture is (at least today), the #1 hit. Cool!. 熟悉我的人知道我实际上最感到骄傲的讲座是我历年来的"时间管理" 讲座。 很多人可能觉得难以置信, 但我个人最骄傲的是我历年来的“时间管理”讲座。靠盖碧.罗宾斯鼎立相助,我去年秋天在美国弗吉尼亚大学的做了个很好的录像,把它放在谷歌视频上, 不管是否是用于商业目的, 公众都可以自由使用。 让我欣喜若狂的是,如果您在谷歌键入“时间管理” ,会查到5000万相关网页,但我的讲座是(至少今天),第一名。酷! |
| April 27, 2008: Still recouperating 2008年4月27日:仍在恢复 |
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I'm in the process of slowly getting my strength back. Once we have demonstarated we can keep the blood pressure down, then we can dial back on the blood pressure meds, which are causing a good part of the fatigure. Several people have expressed concern about the tumor marker. True, it's going up. But by the time this is over, it'll probably be over 5,000, so don't worry too much just yet! 我的体力在慢慢恢复。一旦我们确定能保持血压不升高,那我们就可以减抗高血压药 ,它们是造成疲劳的一个重要因素。 |
Today's box score: Creatanine (kidney function): 3.1 CA19-9 (tumor marker): 404 Blood Pressure: 130 / 82 今天的记分板: |
| April 19, 2008: Recent Doctor visit and my health 2008年4月19日:最近的就诊和我的健康 |
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For those of you scoring the game at home, see today's box score. I'm recovering much faster this time from the congestive heart failure (practice makes perfect, I guess). I'm still hideously fatigued, but today I was out of bed most of the day. Two of my favorite people, MR Kesley and Jessica Hodgins have been visiting, which is wonderful and has buoyed my spirits! 对于那些留意记分的朋友,看今天的记分板。 |
Today's box score: Creatanine (kidney function): 3.2 CA19-9 (tumor marker): 295 Blood Pressure: 134 / 88 今天的记分板: |
| April 16, 2008: In praise of good pill bottle design 2008年4月16日:赞美药瓶的优秀设计 |
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On the left you can see the total number of medications I'm currently taking. Keeping all this straight is a nightmare. I'm really impressed with Target's unique design (see right). The bottles stand on their caps, there's a large flat surface, and they make the font as large as will fit. This is a wonderful example of "design making the world a better place." 在左边你可以看到我目前要服用的所有药物,。安排服药本身就是一场噩梦。 |
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| April 15: Chloe and Cindy Lou Hoo 4月15日: 克娄依和辛迪娄 |
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Thanks to my friend Jack, who pointed out recently that Chloe and Cindy Lou Hoo appear to be separated at birth!
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| April 15, 2008: Heart Failure, Part Deux 2008年4月15日:心力衰竭二进宫 |
E ck. Yesterday's visit to the cardiologist showed that I'm technically back in heart failure. My "ejection fraction" (basically, heart output) dropped back down to 30%. The good news is that only 24 hours later, the medications they put me on have put my blood pressure back in the normal range, and the diuretics have caused me to drop 4 pounds of water weight; both of which were doubtless contributors. It wasn't serious enough to land me back in the hospital, and I'm hopeful we'll have this turned around pretty quickly. The major bummer is that the blood pressure meds make me fatigued. 糟糕。昨天看了心脏科大夫,我在技术上又有心衰。我的“射血分数” (基本上即心输出量)跌回到30 % 。 |
| April 12, 2008: Qualified for SIR-Spheres at Univ. of Maryland 2008年4月12日:可在马里兰大学做选择性体内微珠放射治疗 | |
I spent all day Thursday at the Univ. of Maryland, being seen by fantastic doctors. I am now qualified for this treatment. Jai & I now need to decide how much longer I need to regain my strength before we might pursue this. Oh, the picture here has nothing to do with the text; I just thought it was a great photo of Chloe!
我周四一整天在马里兰大学,
由出色的医生们给我看诊。我现在有资格接受这一治疗。 |
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| April 11, 2008: Robin carries Olympic Torch! 2008年4月11日:罗滨传递奥运圣火! |
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Robin Luo, a fellow cancer patient (see below; she's the one who got "the elephant in the room") was an olympic torch carrier - how cool is that! 罗滨,一个癌症病友(见2008年2月11日文,她是哪个拿到 "屋中的大象" 的人 )做奥运火炬手-是不是很酷! |
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| April 9, 2008: Getting Ready for Next Step |
Well, I'm not quite back on the bike, but I'm healthy enough to travel and move forward with treatment. Tomorrow I'm spending the day at the University of Maryland being evaluted to see if I am a candidate for the SIR-Spheres treatment. Basically, it's a process where a large number of tiny (thinner than human hair) spheres are irradiated with Yittrium-90 and then squirted into the artery that feeds the liver. They preferentially go towards tumors (counter-intuitive, but true), and both block blood flow to the tumors and irradiate them. 2008年4月9日:为下一步做好准备
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| April 8, 2008: Book Launch, Media Craziness 2008年4月8日:新书首发,媒体疯狂 |
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The book went on sale today. Lots of media outlets ran stories, which is very nice of them. Diane Sawyer is running a special tomorrow (Wednesday) night at 10pm on ABC. People who know what I'm really like will doubtless be throwing tomatoes at the screen ;-)
书上市销售。很多媒体发报道,挺好。 |
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| April 2, 2008: Getting back into the fight 2008年4月2日:重新战斗 |
For those of you familiar with boxing, I would describe the weeks since my heart & kidney failure to be a "standing eight count." I got knocked down pretty good and needed time to gather myself. Now I'm back on my feet; still a little wobbly, but ready to engage in the fight again. Yesterday's CT and MRI scans showed that I've added a new, 11th tumor (small), and that a few of my original 10 tumors have grown, but only negligibly so. My biggest tumor is about 2.5cm in diameter. Given that I've been off chemo for six weeks, this was jumping-up-and-down good news, for two reasons: 1) It means the cancer has not grown like craxy, a big fear since stopping chemo. 2) Since all my tumors are in my liver, that means certain liver-specific treatments are possible. I'm typing this from a recovery room; I just had a biopsy taken of my tumor tissue; that will be sent to TGEN in arizona, where they will run some tests to see if they can identify which chemotherapy drugs might be most effective on my particular tumors. My next step will probably be embolization with theraspheres; a liver specific treatment that has a very low rate of side effects, and won't make me feel crappy like systemic chemo does. The fight is rejoined; I've got much more energy now -- I hope to be back on the bike in a week or so. 对于你们那些熟悉拳击的人,我会形容我心肾功能衰竭的这几个星期是"数八秒" 。我被打倒的够惨, 需要时间来休整。现在算是站起来了;还有点不稳,但随时准备再战。 昨天的CT与MRI扫描显示我有了一个新的,第11个(小)肿瘤,我原来的10个肿瘤中的一些也长大了,但只有一点点而已。我最大的肿瘤直径约2.5厘米。在六个星期没有化疗的情况下,这可是令人欢呼雀跃的好消息,原因有两点: 1 )癌细胞并没有疯长 ,停化疗后一直担心这个。 2 )我所有的肿瘤都在肝脏,这意味着可尝试一些肝脏特异的靶向疗法。 我现在是在恢复室打这些; 刚刚从我的肿瘤组织中取了一个活检,这将被送往在亚利桑那州的翻译基因组学研究院,他们将做一些测试看是否能找出对我的肿瘤最有效的化疗药。 我的下一步可能会是肝动脉栓塞加微珠放射治疗; 这是一个肝脏特异性疗法,副作用机率很低,也不会象全身化疗那样让我我感觉很糟糕。 战斗继续,我精力已经强多了,-我希望再过一周左右我就又能骑自行车锻炼了。 |
| March 30, 2008: Pancreatic Cancer does what Pol Pot couldn't. 2008年3月30日:波尔布特没做到的, 胰腺癌做到了。 | |
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Today's news brought the sad report that Dith Pran, one of the great heros of all time, and the inspiration behind the film The Killing Fields, just died from pancreatic cancer. Details are in this story. Pol Pot's Khmer Rouge regime failed to kill Mr. Pran. It took pancreatic cancer only three months from diagnosis. 今天的新闻传来不幸的消息,狄潘 ,一个跨时代的伟大英雄,电影杀戮之地的灵魂人物,刚刚死于胰腺癌。详情见这个报道。 波尔布特的红色高棉政权没有杀死潘先生 。而胰腺癌,从诊断算起仅仅用了3个月。 |
| March 29 2008: Feeling better 2008年3月29日:感觉好多了 |
I'm definitely having more energy; spending less time in bed each day, and feeling more "human" overall. My doctor says I'm strong enough for us to start moving on tests and my next steps in treatment, probably in the next 2 weeks. Good thing, too: my CA19-9 blood marker, which in my case is strongly correlated with tumor activity, has been slowly rising: recent CA19-9 numbers: If my tumors were a stock, they'd have a "buy" rating ;-)
我的精力绝对是强多了;卧床时间少上,整体来说觉的更像"活人"了。我的医生说我身体强到可以开始下一个步的检查和治疗,可能就在下未来2周。好事一件,因为与我的肿瘤活性密切相关的消化道癌相关抗原CA19
- 9,已渐渐升高: |
| March 26 2008: Slow going, but encouraging news 2008年3月26日:进展缓慢,但消息令人鼓舞 |
The last few weeks have been tough; I've been in bed most of each day, having to ration my energy, which is very unnatural for me. Total exhaustion is very frustrating. However, I am starting to, very slowly, gain more energy each day. Tuesday's trip to the cardiologist yielded great news: my echocardiogram showed that my heart function is definitely returning: my "ejection fraction" (measure of blood ejection by the heart) was at its low point 25%; it's now up to at least 45%, and "normal" is 55 to 70 percent. Also, my cardiologist says a lot of the fatigue may be caused by one of my blood pressure medications (coreg), and next week they will probably swap that out for another drug, now that I'm doing better. On the kidney front, my nephrologist is extermely encouraged - for those of you scoring the game at home, my creatanine level (peaked at 3.9) is now down to 3.1, and he says that's a very stong indicator my kidney function is going to return. The only bad news is that the tumors have apparently decided they've been chivalrous enough; my CA19-9 went up from 103 to 170; while not definitive, it's a strong indicator that they are on the move. So I need to hurry up and get healthy enough for our next round of treatment. 过去数周不容易,我每天大部分时间都卧床休息以节省体力,对我来说可真别扭。彻底的筋疲力竭真让人沮丧。不过,我慢慢的已经开始一天天好起来。
周二去看了心脏科医生得到大好消息:超声心动图表明我的心功能肯定在恢复:我的"射血分数" (测量心输出血量)最低是为25 % ,现在升到至少45 % , "正常"的是55%到70 % 。另外,我的心脏科医生说,很多疲劳可能是由于我用的一种降血压药(卡维地洛 )引起的 ,现在我情况好转,下周他们可能会换成另一种药物。 在肾脏方面,我的肾科专家感到非常乐观-为那些爱记分的人,在家里,我的肌酸酐水平(最高为3 .9)现在下降到3 .1,他说,这是我的肾功能会恢复的一个非常有力的指标。 唯一的坏消息是,看起来肿瘤已觉得它们已经侠义够了;我的消化道癌相关抗原CA19 - 9从103上升至170 ,虽然不是绝定的,但这是一个肿瘤在发展的强力指标。所以,我要抓紧时间,并让健康状况恢复到足以开始下一轮的治疗。 |
| March 25 2008: Time Management Talk gets traction 2008年3月25日:时间管理讲座赢得关注 |
People who know me know that the talk that I'm actually most proud of is the talk I've given over the years on "Time Management." With great thanks to Gabe Robins, I'm thrilled to report that if you type "time management" into Google, the video of that talk is now the 6th result! (By the way, I've made that video available under a creative commons license, so anybody can show it for free, so long as they give attribution). 熟悉我的人知道我实际上最感到骄傲的讲座是我历年来的"时间管理" 讲座。 多亏了盖碧.罗宾斯,我可以非常激动地向大家报告,如果你在谷歌键入"时间管理" ,第六个结果就是这个讲座的视频! (顺便提一下,我把这个视频的版权归于创作共用许可,所以,任何人都可免费播放,只要注明出处即可)。 |
| March 19, 2008: Very slow recovery 2008年3月19日:恢复很慢 |
Well, except for the day to go to Congress, I've now been resting at home for more than a week. Spending almost all day in bed is hardly my normal state, but the exhaustion is very real. I've learned a lot about diuretics: drugs that force water out of the body. Part of why my organs (heart/kidney) failed is that fluid built up in my body. With aggressive diuretics, we've forced 20 pounds out of my body in the last 12 days. Wow. I feel like a crushed grape! The doctors are very optomistic my heart will return to something like 80-90% of its original capacity (which is fine; I went into this with great heart function). The biggest question is whether my kidneys will recover and start working on their own. We just stopped the diuretics, to see if my kidneys will "kick in" on their own. It will take probably 2 weeks to know for sure. For those of you scoring the game at home, my creatanine level peaked at 3.9, but is down to 3.4 - my nephrologist (who is awesome), says that is a very encouraging sign. So I rest, and I rest, and I rest. The really good news is that - at least based on blood markers - the tumors are being very chivalrous and not taking advantage of this opportunity to run wild, before I'm strong enough to fight back. My CA19-9 was 103 last Friday, which is only up a tiny bit from my last round of chemo. 嗯,除了到国会的那天外,我已经在家休息了一个多星期。几乎整天卧床可不是我的常态,但确实感到筋疲力尽。 我学到了很多关于利尿剂的知识。导致我器官(心/肾)衰竭的部分原因是体液滁留。在过去12天里,我们已经用强力利尿剂从我体内挤出20磅水。哇,我觉得自己像个被压碎的葡萄! 医生们很乐观对的认为我的心功能将恢复到原来的80-90 % (挺好;我心功能原来非常好) 。最大的问题是我的肾功能能否恢复如常。我们刚停了利尿剂,看看我的肾会不会自己"启动"。大概要2周时间才可以确定知道。对你们那些爱在家里记录分析的人,我肌酸酐水平最高达到3.9 ,现降到3.4 -我的肾病医生(他很棒)说这是一个非常令人鼓舞的迹象。 所以,我休息,休息,再休息。好消息是-至少从血液标志物来看-肿瘤还很侠义,并没有乘我未康复的机会横行。我上周五的消化道癌相关抗原CA19 - 9是103,只比我最后一轮化疗后高一点点。 |
| March 13, 2008: Out of Hospital, on to Congress.... 2008年3月13日 :出医院,上国会... ... |
I was discharged from the hospital on Monday afternoon. Great thanks to my personal angel, MR Kelsey, who came down from Pittsburgh to be with me. MR, you are awesome. I'm feeling MUCH better since the tap (they pulled out 1.4 liters of fluid from my right lung). There's a similar amount of fluid in my left lung, but we'll try to suck that out with duiretics, rather than do another tap, which has small, but real, risks. After consulting with my doctors, I got permission to travel today to Washington, DC, to testify before congress about the need for more funding for pancreatic cancer research. I think it went pretty well; the staffers tell me that when the congresspeople put down their blackberries and listen, it's a very good sign, and that certainly happened. Oh, and in the "never a dull moment" category, we had a pretty serious car accident on the drive up, but everybody was okay. How ironic it would have been to go that way! Great thanks to Julie Fleshman and everybody else at PanCAN (www.pancan.org) who did all the work to make my testimony possible. Great thanks also to Jack Sheriff, my long-term best friend, who was able to come and provide support; I'm still a little wobbly from the heart/kidney issues, but with everybody's help, I got through it, and I'm hoping to continue to heal up over the next few weeks. 我周一下午出院。衷心感谢我的个人天使, 凯尔西,从匹兹堡来陪我。先生,你真了不起。 我自穿剌抽液后感觉好得多了(从我的右肺部抽出1.4升液体)。左肺也有类似的积液量,不过我们会尝试用利尿剂来排除,而不再做一次抽液,穿剌抽液风险虽小,但还是有的。 我得到医生的许可,今天到华盛顿在到国会作需要有更多的资金用于胰腺癌研究的证词。我觉得听证会开的不错; 工作人员告诉我,当议员们放下黑莓手机倾听,这是一个非常好的兆头,而议员们确实这么做了。 哦,算是"无巧不成书",我们在去的路上发生了一起相当严重的车祸,好在无人受伤。要不然就太有讽刺意味了! 非常感谢朱莉•弗莱西曼和胰腺癌行动网( www.pancan.org )的同仁所做的一切,从而使我能够提供证词。也非常感谢我长久以来的挚友杰克•沙利夫能赶来提供支持; 我由于心/肾的问题, 还是有点虚弱不稳,不过在大家的帮助下,我已度过难关,希望在未来几周内能继续康复。 |
| March 8, 2008: Hospitalized 2008年3月8日 :住院 |
星期四我和洁见了肾科专家托马斯•未兰。根据化验结果和我的病情,他主张联合应用利尿剂和穿剌抽液来排除肺周积水。基于时效和安全的原因,他建议我住院治疗,所以我星期四晚上住进了医院。 尽管细节仍然待查, 我们相信是化疗药物给我的心脏和肾脏带来了巨大负荷, 导致我肺周积水。周五早上做了"穿剌"-在我的背部肋骨间插入一根针,穿透外肺囊, 但不是肺本身。他们抽出了1升多的积液,化验并无异常。不到一小时,我的呼吸就感觉正常了(而不是之前费力的浅呼吸)。最重要的是,这是我两周以来第一次能躺平好好睡觉。感觉棒急了。 我的左肺也有约1升的积液,但将用利尿剂来排除,而不是再做一次穿剌。穿剌本身很安全,但如果能避免,医生们倾向于采用无创的疗法。
医生们正在调整高血压药物和利尿剂的配伍组合。他们相信我的心脏没有受到持久损伤。肾脏的情况不那么明朗,但目前的状况仍可维持生活。原先的大麻烦是心肾功能同时受损而导致积水。 |
| March 5, 2008: Good News and Bad News 2008年3月5日: 好消息和坏消息 |
The painful part is that we think my abdominal cavity has started to fill with fluid, a side effect of the kidney inefficiency and high blood pressure. . That particularly stinks because the fluid pushes on lungs and heart. I can't sleep (or breathe clearly) while lying down; I have to sit up and try to sleep that way. And I get totally out of breath after a flight of stairs. More news as it develops. 好消息是,肿瘤似乎基本上没有进展。 坏消息是,化疗药的毒副作用已变太强。我的肾功能已降至50 %以下(肌酸酐3.4,血尿素氮54,对你们那些爱记录分析的人) 。我的血压已窜至200/100。从医学定义上可以说我有"高输出量性心力衰竭, 但这并不象听起来那么可怕。 糟糕的是,肾功能不全和高血压已导致我的腹腔开始积液,而积液压迫心肺。我不能躺下睡觉(或轻松呼吸),我只能尽量坐起来睡。而上一层楼梯就让我喘不过气来。 所以我们做了一些事情来解决这些问题: -停止所有化疗 -用抗高血压药 -用利尿剂来帮助我的身体排出积液,使我的身体(理论上应该)开始吸收回在腹腔的积液并逐渐由小便排出。 -我明天要去看肾脏专科医生。 -昨天,我输了次血,这非常有助于我的低红细胞数,并给了我更多的能量。 这是一个挫折,但希望是个小挫折。不过,如果化疗药物造成的肾损害是永久性的,那就非常,非常不妙了。 随形势发展,会有更多新闻。 [译注] 肌酸酐正常值.:小于1.2 mg/ dl,血尿素氮正常值:10~20 mg/dl,正常情况下大部份人之血尿素氮/肌酸酐 之比值应在12 ~16 之间,但少部份人会在12 ~ 20 之间。 |
| March 1, 2008: The Median isn't the Message 2008年3月1日:中位数不说明问题 |
Stephen Jay Gould wrote a brilliant essay I think most cancer patients would benefit from. It's only a few pages, and it's here. 斯蒂芬・杰伊・古尔德写了一篇精采文章, 我想多数癌症患者都能从中受益。 就几页,在这里。 |
| Feb 15: Six months later .... and still alive & healthy 2008年2月15日:六个月后...仍然健在 |
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Today is a pretty important day. It was August 15th, 2007, when I was told I likely had "three to six months of good health left." Today is six months from that day. Just to prove I'm still alive, here I am, holding today's New York Times! I rode my bike today; the cumulative effects of the chemotherapy are hurting my stamina some, but I bet I can still run a quarter mile faster than most Americans. The doctors weren't wrong; they always said that if the palliative chemo worked, I'd buy more time, but that it was a long shot. And the doctors have done a brilliant job of tweaking my regimen to help my odds. How much longer this will work is hard to know, but I'm going to keep having fun every day I have left, no matter how many or how few of them I get. 今天对我是个挺重要日子。在2007年8月15日,我被告知还能有3到6个月的健康身体。今天满6个月了,我手持的是今天的纽约时报,证明我还活着! 我今天又骑车锻炼了;不断的化疗让我体力有所衰减,但我相信我跑400米还比大多数美国人都快。 医生们并没有错,他们总是说,姑息化疗是希望不大,但如果有效,能延长生存期。而且他们也为提高疗效而为我精心设计治疗方案 。很难说还会有效多久,但不管时间长短,我会开心度过余下的每一天。 |
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| Feb 11: The Elephant in the Room 2008年Feb 11: 屋中的大象 |
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At "The Last Lecture," I brought out a bunch of stuffed animals and said anyone in the audience who wanted one should grab one after the talk. I don't know where the others ended up, but a very brave Carnegie Mellon senior named Robin Luo grabbed the stuffed elephant; she sent me this photo recently. Robin has been battling cancer herself; and during my tough times in Houston, we exchanged frequent emails. She's doing great, and has become quite the advocate, as well: check out the relay for life to see how you can help. It is somehow quite fitting that a compatriate with cancer got "the elephant in the room."
在"最后的讲座"中,
我带了一堆毛绒动物,并说,任何想要的听众在讲座后都可以来拿。
< 译注 :"屋中的大象"这个成语是指有一件事大家不可能视而不见,但又不愿谈及> |
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| Feb 9: Tumors start growing, but we fight back 2008年2月9日: 肿瘤开始成长,但我们奋力抗击 |
My CT scan in the first week of January showed the beginning of "creeping growth" of the tumors in my liver. This indicated that my palliative chemo had begun to fail. A huge bummer. Our counter-measure was to add the drug Avastin (making my regimen Gemcitabine+Tarceva+Avastin). this was a long shot, but since Avastin doesn't have bad side effects, we figured we'd try that first. And it worked! My Febrruary 5 scans showed no growth (and maybe even a little shrinkage) in the precedeing month. I and my docs were all giddy that the long shot worked. The obvious questiion: how long will it work? Nobody knows, but I'll ride it until it stops working; with luck I can buy another few months. Meanwhile, I've identified the "next steps" I'll take after that, all of which are more toxic in terms of side effects. So I'm ready and loaded for bear when the time comes. The only downsides are 1) my kidney function seem to be weakening; not dangerous yet, but moving in a bad direction. It's possible the Avastin is the culprit, but it may be a combination of Avastin, gemcitabine, and the IV contrast in all the monthly CT scans (most people are only scanned every two months). So we'll be watching my kidneys carefully. 2) My last chmeo produced a 3 day fever, spiking at 103, plus some nausea. These are small prices to pay ... any day you have tumors in your liver and they don't get bigger is a good day! 我在一月第一周的电脑断层扫描显示在我肝脏的肿瘤开始"逐渐增长"。这表明我的姑息化疗已开始失灵。真是晦气 。 1) 我的肾功能在减退,还不危险,但正朝坏的方向发展&;;#12290;阿瓦斯汀可能是罪魁祸首,但也可能是阿瓦斯丁,剑泽,和每月静脉显影电脑断层扫描的组合作用(大多数病人每两个月才扫描一次) 。所以我们会小心监测肾功能。 2) 上次化疗让我发了三天烧, 最高到华氏103度(摄氏39.4度), 还反胃恶心。 |
| Pancreatic Cancer Action Network Advocacy Day 胰癌行动网宣传日 |
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March 10th and 11th, the Pancreatic Cancer Action Network will be having advocacy days in Washington, DC. I plan to be there. Perhaps I can lead a cheer or two at the rally.... how about: two...four...six...eight .... with pancreatic cancer you emaciate! 三月10日和11日, 胰腺癌行动网将在首府华盛顿举行宣传日活动。 我打算亲临现场。或许还能带头喊几句口号... 这个如何:胰腺折磨, 形消骨立! |
| Feb 1: How am I Feeling? 2008年2月1日 : 我感觉如何? |
This is the question I'm most commonly asked.. The short version is: the tumors are still to small to be felt, or to have any effect on my health. So what I'm feeling is due to the chemotherapy. Some days I'm tired, and some days I have flu-like symptoms (chills, muscle and joint aches). And my GI tract is still somewhat of a mess; I eat 4,000 calories a day, just to maintain weight. I occasionally have mild nausea, but it's rare and really mild. In the last month, the new side effect is neuropathy: numbness in the fingers and toes. It's been getting worse; I can still touch-type, but I make tons more mistakes. And it's getting hard to find things in my pockets, since I'm losing the sense of touch; I can mostly just feel pressure. All in all, a small price to pay for walking around! 这是人们最常问的问题。简而言之:肿瘤还很小, 感觉不到,对我的健康也没影响。 |
| Jan 23: Lobbying Congress 2008年1月23日 游说国会 |
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The Pancreatic Cancer Action Network launched a major initiative called Raise the Cure, attempting to get Congress to allocate more research funding for pancreatic cancer. I spent the day on the hill, meeting with senators and members of the house ("Hi, I'm Randy, and I'll be your 'Michael J. Fox' for the day...") Here we are with Steny H. Hoyer , the House majority leader. Next to me is PanCAN’s Megan Gordon Don, director of government affairs, and farthest from me is Julie Fleshman, PanCAN's president and CEO. 胰腺癌行动网发起了一项名为”集资抗癌”的大型倡议活动,试图向国会争取更多的胰腺癌研究经费。 我一整天都在国会山会见参,众议员们(“嗨,我是兰迪, 我今天要做对抗胰腺癌的迈可尔.福克斯” (加拿大演员, 帕金森氏病患者,
致力于推动对该病的研究, 译者注) 。 这是我们和议会多数党领袖斯戴尼•霍伊尔的合影。站在我身旁的是胰腺癌行动网政府事务处主任梅根•戈登•唐,站在离我最远处的是胰腺癌行动网的总裁兼首席执行官朱莉•弗莱西曼。 |
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| Jan15: The Book is Done! 2008年1月15日 大作完成 ! |
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Kudos to Jeff Zaslow, the world's fastest writer. I am proud to say that the book "The Last Lecture" is now done! I'm even prouder to say that we accomplished this with the major constraint that it take little or no time away from family (see "How to Write a Book on an Bike," below). Jeff and I are very proud of how it has turned out. It's 61 chapters in 206 pages. There are 18 photographs, 1 bar chart, and (for all my mathematical friends), one equation. I am particularly proud that I negotiated to get the words "Carnegie Mellon" on the front cover! (click on image to see it larger). Hyperion is publishing the book in early April; details at www.TheLastLecture.com 我自豪地宣布《最后的演讲》一书现在大功告成了!荣誉归于杰夫.莱斯娄--世界上写书最快的作家。 杰夫和我对该书非常满意。全书分61章共206页,18张照片, 一张条形图, 还有(为我那些喜欢数学的朋友)一个等式。 |
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| Kai-Fu Lee Sends me Greetings from Chinese Students 李开复发来中国学生的问候 |
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Kau-Fu Lee sent me the following; if you download and run this .exe, it's a sweet animation from a bunch of chinese students thanking me for the lecture. It's a small world, after all. 李开复给我发来如下文字:如果你下载并运行该可执行文件,你会看到来自一群中国学生感谢你所做的"最后的讲座"的甜美动画。 |
| Jim Valvano at the 1993 ESPYs 吉姆.法瓦诺于1993年ESPY体育奖颁奖典礼上的演讲 |
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Several people were kind enough to point me to this very inspirational piece by Jim Valvano, who - like me - did it knowing he was a terminal cancer patient. I personally love the moment where they try to tell him he only has 30 seconds left! Click here to view the video.
有几位好心人把吉姆.法瓦诺这段非常催人奋进的视频推荐给我。他和我一样,在发表演讲时知道自己是个癌症晚期病人。我个人最喜欢他被告知还剩30秒时所做的反应!点击这里观看:
[3]经典摘译: “人们知道我患癌症后总问我每天是怎么过的, 其实还是一如既往… … 对我来说, 我们每天都应做三件事,第一是欢笑, 无日或缺. 第二是思考, 不思则罔. 第三是感动落泪, 勿论悲喜. 想想看, 如果一天里你笑过,想过,哭过, 那一日就不虚度. 若能持之以恒, 生命就别有洞天”。 |
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| Dec 31: Dylan turns six
迪伦满6岁 |
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For most people, Dec 31 is New Year's Eve. In our family, it's Dylan's birthday. Today was a great one; Dylan spent the morning at the aquarium seeing all sorts of animals, then spent the afternoon with Daddy and his cousin Hannah, watching a movie. Then, we all got together at Red Robin for dinner, including balloons. Dylan & I went to one of those photobooths where they take your picture and then process it to look like a human did it in pastels. The best part is there's a video where they make it look like a human is really drawing it - every so often, he says "oops!" and erases a part and redoes it - Dylan thought that was hysterical! Here's the final product 对大多数人来说,
12月31日是新年除夕。在我们家,它是迪伦的生日。今天是很棒的一天。迪伦上午在水族馆看各种各样的动物,然后下午同爸爸和他的堂姐汉娜一起看电影。然后我们去“红罗宾”用晚餐,当然少不了气球。
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| Dec 23: How long will the palliative chemo work?
12月23日:姑息化疗能维持多久? |
A natural question is "how long will the palliative chemo (gemcitabine+tarceva) continue to work, holding my tumors basically stable in size?" There is some data on the roughly 10-15% of metastatic pancreatic cancer patients where gemcitabine works for them. I talked with my oncologists, and read some journal articles. There's no single answer (it's obviously a bell shaped curve), but the best guess, based on available data, is that my tumors will "hold" for another 2-4 months from today. That's really cool. Jai and I call this "bonus time." In terms of medical treatment, the general concensus seems to be "keep doing what's working." Once it stops working, there are a number of things to try, but they're all even longer shots than the thing we tried first, which only works for 10-15% of patients. 一个自然的问题是: "姑息化疗(剑泽合并爱罗替尼)能使肿瘤基本稳定多久?从对剑泽有效的10-15 %转移胰腺癌患者中已收集了一些研究数据,。 我跟我的肿瘤科医生谈过, 也看了一些学术文章。没有一个标准答案(显然是一个统计学的钟形曲线), 但根据现有数据的最好的估计,是我的肿瘤还能被再控制2-4个月。 这真酷。洁和我把这叫做"捡来的时间" 。
讲到治疗,一般的共识似乎是"有效就继续"
。当现方案不管用了,
还有些其它疗法可试,
但它们比现在10-15
%的有效率还要低。 |
| Dec 10: How to Write a Book on a Bike
12月10日:自行车上著书 |
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Jai wanted me to write a book, but that begged the question of how to do that without taking time from being with the family. The solution? Jeff Zaslow is actually doing the heavy lifting of creating the prose (and dang, is he a good writer), but the deal is that he and I talk one hour each day, while I'm exercising on my bike. That way, I can get all my stories and anecdotes to a real writer (I stink at writing, anyway), without taking any time from family. 洁想要我写一本书,但这带来的问题是如何不缩减于家人在一起的时间。解决方案?杰夫.莱斯娄是实际写作的主力(嘿, 他是个好作家), 计划是我们在我骑自行车锻炼是谈一小时。
这样,我可以把我所有的故事和轶事告诉一个真正的作家(我本来写作就不行),而不占用家人的时间。 |
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| Dec 7 : Palliative Chemo Continues to Work! 12月7日 姑息化疗仍有效 |
The palliative chemotherapy (gemcitabine + tarceva) is still working. My december 7th CT scan was basically a photocopy of my Nov 8th scan; the tumors have not grown at all. My CA19-9 (for those of you "scoring the game at home" dropped from 208 on Aug 14th to 59 on Nov 2, and then 64 on Nov 26th. This is all really good news. My local oncologist, Dr. Michael Lee (who is spectacular, and is himself a cancer survivor), tells me that my response, on a scale of 1-to-10, is a 10. I need to be clear: this is not a cure, and it won't work for long. "Winning" right now means buys extra months, not years. But I'm thrilled to have this "bonus time"!!! And I will be in good health for Christmas. I will probably be adding Avastin to my cocktail soon.. It's been a wonder drug for lots of metastatic cancers, but the large trials don't really indicate it makes much of a difference for pancreatic. However, several doctors have anecdotal stories of a single "fluke" patient who lives 12 or 18 months on it, so I'm inclined to try to be that fluke patient. I suffer small side effects from the chemo: I have 1-2 days/week (surprisingly, it starts about 48 hours after the IV) where I feel mild nausea and some substantial fatigue. We switched my "chemo day" from Fridays to Mondays so that my weakest day occurs during the week, when we have Rachael to help Jai out with the kids. Sometimes, I can't feel my fingers or toes, and I've had some infrequent, but very painful intestinal cramping, but all-in-all, "a very small price to pay for walkin' around," as we in the cancer business say. My red blood cell counts are a little down, but I can ride a bike an hour each day, and I can fully play with the kids and enjoy my life. Meanwhile, I'm frantically examining "plan B" treatments when the gemcitabine+tarceva stops working. Frankly, there aren't any silver bullets out there, but I'll give it my best shot. Leading candidates are some vaccine trials about to open up at Johns Hopkins, and TGEN (www.tgen.org), which does some customized therapies. I have about 30 other things I'm investigating, but those are the current leaders. 姑息化疗(剑泽合并爱罗替尼)仍有效。我12月7号的CT扫描结果基本上是11月8号的翻版;肿瘤一点没长。我的消化道癌相关抗原CA19-9(对你们那些爱记录分析的人)从 8月14号的208降到11月2号的59, 再到11月26号的64。这真是好消息。 我当地的肿瘤科医生,麦克尔.李博士(他棒极了, 而他本人还是位癌症幸存者)对我说, 我对化疗的反应,用10分制来评分的话,可以打满分。 我要明白说:这不是治愈,有效是暂时的。 "赢" 是说一次几个月,而不是几年, 的争取时间。但我仍然为这"捡来的时间"而激动 !!!我也能健康地过圣诞。 我可能将阿瓦斯汀加入我的鸡尾酒疗法中。它对很多转移的癌症的都效果显著,但大的临床试验并未见它对胰腺癌有效。不过,有些医生知道一个 “幸运”患者依靠这种药物活了12或18个月,所以我要去做那个“幸运”患者。 化疗有些难过的副作用:每 周有1到2天(令人惊讶的是,总是在静脉给药后48小时)会感到轻度恶心, 有时非常疲劳。我们把化疗日从周五调到了周一, 这样我每周最虚弱的日子会在工作日,有瑞切儿过来帮洁带孩子。有些时候,我的手指或脚趾会失去 感觉,时不时地会有很痛苦的肠绞痛,但总的来说,就像我们患癌的人常说的那样“为活着而付的小小代价”。我的血红细胞数略有所降, 但是我能每天能骑一小时自行车, 与孩子们一起嘻戏, 享受生活. 同 时, 我也在疯狂寻找剑泽合并爱罗替尼失败后的替代治疗方案。坦率地说, 没有特效药, 但我还是要尽力而为.主要的候选方案是即将开展的约翰霍普金斯和翻译基因组学研究院的疫苗临床试验, 进行个性化医疗. 我有大概30件在考虑的疗法, 但目前这些是首选。 |
| Dec 1: Scuba diving!
12月1日 帶水中呼吸器潜泳 |
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I'm definitely in the running for "healthiest dying man in America." This photo was taken at 105 feet off the Cayman islands on Dec 1st. When I asked my oncologist if I could go scuba diving, he thought for a while and said, "Medically, I can't think of any reason you can't .... but I have to admit, it's not a question that comes up very often for metastatic pancreatic cancer patients!" Kudos to my dive buddies, Steve, Jack, and Scott, who kept very careful watch over me in the water. 毫无疑问我正在竞选“美国最健康的垂死男子”。这张照片是12月1日在离开曼群岛105英尺的地方拍的。 当我问我的肿瘤科医生我是否可以去水肺潜水时,他想了一想说, “从医学上说,没有不能去的理由…不过我得说,这可不是胰癌转移患者常问的问题!” 感谢我的潜伴,史蒂夫,杰克,和斯科特在水中的细心照看。
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| Nov 29: Settling into our New Lives 11月29日:安顿我们的新生活 |
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As you all know, we moved to Virginia immediately upon my terminal diagnosis; the goal being to have our family settled as sson as possible. That strategy has been really validated. Life here is logistically much easier (warmer weather, living on a a cul-de-sac in suburbia). We miss everyone back in Pittsburgh, but our new neighbors have welcomed us warmly and the kids are thriving, which was always our main concern. Being so close to Jai's family is the huge win we knew it would be. Dylan is loving kindergarden and taking Karate classes. Logan is potty trained (the pure pride when he says "I used the Potty all by myself!" is pure Norman Rockwell). Chloe says about 100 words, most of which melt my heart. Unfortunately, she recently learned "no no no no no," which she treats as one word. Jai is redecorating (i.e. "nesting") in our new home. We have a wonderful nanny Rachel, and Laura from Pittsburgh comes down to help out, which has made it possible for us to travel occassionally. We are starting to look into our options regarding Hospice care when the time comes, but Jai & I are very pleased with having goten the kids into their new routine and so settled in advance of the coming storm. 大家都知道,在我的临终诊断后我们搬到维吉尼亚州; 是希望我们的家庭尽快安顿下来。实践证明, 这是正确的选择。这里的生活容易安排的多(天气暖和,住在郊外的半封闭街区) 。我们非常想念在匹兹堡的每个人,但我们的新邻居对我们很热情,孩子们在茁壮成长,这是我们最关切的。与洁的家人如此接近是个大便利,我们就知道会是这样的。 迪伦喜欢幼儿园,在学习空手道。洛根能自己上厕所了(当他说 "我一个人上的厕所!" 时的自豪真是令人鼓舞) 。 克娄依能说大约100个字了,大部分都让我心头发热。不幸的是,她最近学了"不不不不不",把它当成了一个单词用。洁在重新装装饰(即"筑巢" ) ,我们的新家。我们有一个了不起的保姆雷切尔,加上从匹兹堡来的劳拉帮忙,这使得我们有可能偶尔出外旅行。
我们现在正始选择当最后时刻到来时的临终关怀医院,但洁和我非常高兴在暴风雨来临前我们就让孩子们能安定的融入新生活常规。 |
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| Nov 28: Leveraging Fame for Good 11月28日:以浮名换公益 |
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Jai & I have been trying to see how we can use my D-list celebrity (apologies to Kathy Griffin) for good. I'm working with both the Pancreatic Cancer Action Network (PanCAN) and the Lustgarten Foundation, doing things like videotaping public service announcements and meeting with lawmakers up in Washington, DC. One reason pancreatic cancer is such an "orphan" disease is that we don't have many long-term survivors to lead marches on Washington. So I'm trying to sort of become the "Michael J. Fox of pancreatic cancer." 洁和我一直在努力看我们能如何利用我的三流名人(抱歉凯茜格里芬)身份做些公益。我正在和美国胰腺癌行动网 和拉斯特.盖腾基金会协作, 拍摄一些公益广告, 并和华盛顿的议员们会面。 胰腺癌长期不受重视的原因之一是我们没有多少长期生存者可以到华盛顿游行情愿。 所以我正努力成为对抗胰腺癌的迈可尔.福克斯 。 (加拿大演员, 帕金森氏病患者, , 致力于推动对该病的研究,译者注) |
| Nov 27, Time Mangement Lecture for Posterity 11月27日,留给后人的时间管理讲座 |
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The lecture I thought I would be famous for at the end of my career was the talk I give ocassionally on "Time Mangement." I was able to travel to the University of Virginia and give it today. Great thanks to Gabe Robins for his herculean efforts. I spoke in Old Cabell Hall, which is an amazing theater; 180 degree spread and very vertical; it seats 850 and you feel like you can touch any of them at arm's length. It was important for me to give this lecture and have it properly videotaped: now that we've seen how effective Google Video is at allowing a talk to be widely viewed, I'd like for the information in this talk to be freely available for anyone who might benefit. Plus, it was great to see my old colleages, and my family was able to converge and we all got together, so it was just a great day. The talk is available here. 我过去以为在我的职业生涯结束时, 我闻名于世的讲演会是我时而做的"时间管理”的讲座. 今天我到维吉尼亚大学,做了这一讲演。 非常感谢盖碧.罗宾丝的巨大努力。 我的演讲在宏伟的老凯贝尔礼堂,听众席180度展开而且相当垂直延伸,它的850个席位让你感到每个人都触手可及。我很看重这个演讲并要有妥善的录像:现在我们都看到,谷歌视频是如何有效的让一个讲演广泛传播,我希望任何一个可能受益的人都能无偿的看到我的讲话。另外,见到我的老同事也很高兴,我的家人也聚在了一起。真是很棒的一天! 讲演可以在这里看到。 |
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Nov 27: "The Last Lecture" as a book 11月27日 “最后的演讲”出书 |
When Jeff Zaslow's column appeared in the Wall Street Journal (WSJ), about a dozen publishers emailed me, asked if I would be willing to write a book based on it. (I found this laughable, since at the time the palliative chemo was not yet working, and I thought I was down to about 6 weeks of good health). When the palliative chemo started working and we had some breathing room, I mentioned this to Jai, and she told me she wanted to do it. She was, in fact, quite emphatic. We had always talked about my "writing the manual" for her and the kids in my remaining time, and Jai felt that if it were a "real" project, I might take it much more seriously. Jeff Zaslow from the WSJ, who is a terrific writer, was willing to be my partner and do the heavy lifting, so the deal we struck is that we would do the book together as partners, but he would write it (my colleagues from the Alice team are smiling, as they're familiar with this model of my "authoring" a book). The wonderful part is that this takes almost no time from the family: each day, I ride my bike for an hour and talk with Jeff on the cellphone. The process has already been wonderful; he's great at dragging stuff out of me I would never have dredged by myself. I've grown a little disappointed with the news media: there were early reports that Jeff was somehow "cashing in" on my story, which is simply not true. Neither he nor<;;;/strong> I were "cashing in," for that matter (the book getting a large advance-on-royalties took us both by surprise) - but I thought it was particularly unfair that some early stories made it look like he was somehow doing this by himself. I am thrilled that Hyperion, the publishing arm of Disney, will be publishing the book. Somehow that just feel right, and they've been great to work with, in terms of being very respectful of my circumstances. Here's the press release about the book. 当杰夫.莱斯娄的专栏在华尔街日报上发表之后,近一打儿的出版社发邮件给我,询问我是否愿意以此为基础出一本书。(我那时觉得真搞笑,因为姑息化疗尚未起作用,我觉得我的健康时间只剩六周)。姑息化疗有效后,我们缓了一口气。我跟洁谈起此事,她告诉我她愿意。她其实是相当肯定的。 我们曾总谈论在我剩下的时间里为她和孩子们“写本手册”,洁觉得如果它是个“真正”的项目,我可能会更加认真地对待它。 华尔街日报的杰夫.莱斯娄,是个顶尖笔杆子, 愿同我合作并做主要工作. 我们的协议是我们将合著此书, 但他主笔(我爱丽丝团队的同事在微笑,因为他们熟悉我这种"著书"的模式)。妙处在于,这几乎不占用我家人的任何时间:每天,我骑一小时自行车的同时给 Jeff打电话。这个过程很愉快,他很善于挖掘出我从没有想到的素材来。 我逐渐对新闻媒体有些失望:早先有报道说杰夫通过我的故事来“捞钱”,这完全不是事实。他和我都没有想 “套现”(这本书得到的巨额版税预付金出乎我们的意料),但早先的故事让人觉得是杰夫自己来“捞钱”,我觉得这对他特别不公平。 我很高兴 迪斯尼的海波公司将出版这本书。我感觉挺好, 与他们一起工作好 极了, 特别是他们很尊重我的特殊情况。这是关于这本书的新闻稿. |
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| Nov 21 Lions and Tigers and Awards, Oh, My! 11月27日,天哪! 狮子, 老虎和奖章 |
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In the last month, I've received a number of professional awards. I would be disingenuous if I didn't admit that I don't feel these are really deserved; after all, there's the "give the dying guy an award" factor. However, they all reflect favorably on Carnegie Mellon and I accept them all gratefully. As they say, "Dying is a good career move." :-) Specifically, ACM SIGCSE Outstanding Educator Award: this is wonderful because it comes with a keynote address where I can talk about Alice at the annual conference. It's March 12. Through the wonders of videotape, I'll give that talk "Dead or Alive" ;-) ACM Karl V. Karlstrom Outstanding Educator Award : this was very touching because it was Andy van Dam who called to tell me. ACM Fellow: I'm not sure I deserved this, but I'm very honored by it. 上个月我收到了很多专业级奖项。说实话, 我不配拿这些奖.而且,这其中有点"颁奖安慰快死的人"。但是, 这些奖项对卡内基梅隆大学都是加分,所以我都感谢激接受。常言说得好, "死亡让事业更上一层楼":-) 特别是以下奖项: 美国计算机学会计算机科学教育专业组杰出教育奖:这太好了, 因为它附带了一个主题演讲的邀请,我可以在年会上谈谈爱丽斯项目. 时间是3月12号, 通过神奇的录像带, 我不论生死都可以讲演。 :-) 美国计算机学会卡尔. 卡尔斯佐姆杰出教育奖:安迪.凡丹打电话通知我的,让这一奖对我更有意义。 美国计算机学会院士:不知道是否配这个奖,但我倍感荣幸。 |
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| Alice Merit Badge
爱丽斯勋章 |
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Alice Merit badge for Girl Scouts, made by a single troup more as a lark than anything else. But dang, this really made my day! 给女童子军的爱丽斯勋章,一个女童军的玩笑.但,这让我高兴了一天! |
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| Nov 19: Randy Pausch Day in Pittsburgh! 11月19日:匹兹堡市的兰迪.波许日 |
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November 19th was declared "Randy Pausch Day" by the city of Pittsburgh. Randy Bryant was kind enough to accept the award in person, and they phoned me and said nice things about how I had shown the world how great Carnegie Mellon and Pittsburgh are. 匹兹堡市宣布把11月19日定为“兰迪.波许日”。兰迪·布赖恩特非常好,帮我去领了这个奖. 他们给我打电话赞扬我向世界展示了卡内基梅隆大学和匹兹堡市的优秀。
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| What Does this Vulture know?
这只秃鹰知道什么? |
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On the way to the Police concert, we stopped in Williamsburg. Jai thought it was hysterical that a turkey vulture followed me around for several hours during a walk. He's in the tree in the lower picture. 在去“警察”音乐会途中,我们在威廉斯堡逗留。一路上一只秃鹰跟了我几个小时,洁觉得很可笑。 下面的照片中它就在树上。
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| Nov 6, 2007: Meeting "The Police"
2007年11月6日 与“警察”亲密接触 |
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Jai &I took our first kidless vacation in a long time. We went on a three day, three night adventure to Williamsburg and Charlottesville. At UVa, we saw "The Police" perform. The concert is truly terrific. Jai is a huge Police fan, so imagine her surprise when we were whisked backstage to get to meet the band! Great thanks to Gabe Robins and others at UVa who made this possible. 洁和我重温没有小孩的双人假期. 我 们去了威廉斯堡和夏洛茨维尔(&;#24343;吉尼亚大学所在地) 共度了三昼夜的美好时光。在弗吉尼亚大学我们观看了“警察”乐队的表演。音乐会绝对是棒极了。洁是“警察”的超级粉丝,所以我们被带到到后台去见乐队成员 时她真是喜出望外。万分感谢盖碧.罗宾丝和其他弗吉尼亚大学的朋友们的精心安排。
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| Oct 31, 2007 : Happy Halloween!!
2007年10月31日 万圣节快乐!! |
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What an "Incredible" family we are!!
Medical update: Things are going well. I get chemotherapy once a week, and it has some side effects but has not been dramatically affecting my super powers. 瞧我们这一家”超人” 治疗状况更新:一切还都不错。我一周一次化疗,有些副作用,但还不怎么影响我的超能。 |
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| Oct 19 , 2007: Palliative Chemo is WORKING!!!!
2007年10月19日 姑息化疗有效!!!! |
On Oct 1st, I had a CT-scan, and a follow-up PET-CT scan on Oct 13th. Both confirmed that we are willing: The tumors in my spleen are now gone, and the dozen or so tumors in my liver are all either stable or slightly smaller. This happens in something like 15% of the cases of people who get gemcitabine+tarceva. It's a lottery, and I'm a winner. Statistically, this means I probably just bought an extra 2-4 months of good health. Said another way, I may have just doubled my life expectancy - you try to do that! Most importantly, that buys me time to pursue "plan B" - the gemcitabine+tarceva will not last forever, and we want to have the next thing cued up and ready to go. I am currently looking into other chemotherapies, some vaccination approaches (including a custom vaccine that would be made from my own cancer cells), and some super-secret stuff I'm not at liberty to talk about. But it is safe to say that I am thrilled with the quality of medical care I'm receiving and that I feel like I'm getting the cutting edge stuff that my species can provide for me. Having said that, "winning" means buying time; I will always hold out hope that a miracle cure is developed that would give me a normal life span, but right now we're fighting to stay alive a few more months at a time., My quality of life is very good: I ride my bike an hour a day, play as much as I want with my kids, and enjoy being married to the most wonderful woman in the world. I have interimittant gut pain, some fatigue, and some mild "flu like symptoms" each week, approximately 24-72 hours after the chemo, but it's manageable. Small price to pay for walking around. 10月1日,我做了个计算机断层扫描,接着13号又做了个正电子影像断层扫描。结果如我们所愿:脾的肿瘤消失了,肝脏处的大约12个肿瘤要么维持原状要么略微缩小。 只有15%左右的病人对剑泽合并爱罗替尼的疗法有反应。这是抽奖, 我现在是赢家。按照统计学来说,这意味着我可能可以再多享有2-4个月的健康。换句话说,我将我的预期生命翻了一番-你能做到吗! 最重要的是,这给了我寻找二号方案的时间--剑泽合并爱罗替尼不会一直有效,我们要安排好下一个候补疗法。 目前我在探索些其它的化疗方案,疫苗疗法(包括用我自身癌症细胞制造疫苗),还有其它一些在此我不便公开的疗法。 但我可以说的是我非常高兴我有质量是一流的医疗看护,我觉得人类所有的最新医疗手段我都得到了。 话又说回来,”赢”现在意味着争取时间;我总怀有希望奇迹出现,新疗法能使我生命延长如常人,但目前我们的奋斗目标是每次多活几个月。 我的生活质量还是很不错的:每天骑一小时自行车,和孩子尽享天伦,并与这世界上最好的女人齐眉举案。我时不时有肚子痛,有些疲劳,并且每周在化疗后大约24-72小时有类似流感的症状,但都还好。对能活着而言这只是小代价而已。 |
| Sept 4 , 2007: Dolphin Swim with Dylan
2007年9月4日带迪伦与海豚共嬉戏 |
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I'm sorry it took me so long to post this: I've obviously been a little busy. Shortly after my terminal diagnosis, I knew that one of my biggest priorities was to create memories for my children. Chloe and Logan are both so young that it's likely they'll have no direct memories of me. Dylan is the oldest, and at 5 (turns 6 in December), his memories are likely to be fuzzy. Hence the engineering question: What would make for the sharpest, most visceral memory, esp. for a kid who loves animals? Answer: go for a Dolphin Swim!' Dylan and I spent a glorious 4 day, 3 night "Daddy and Dylan" vacation in Orlando, where we visited the Magic Kingdom and swam with Dolphins at Discovery Cove (both places were absolutely incredible to us, providing admission, special opportunities, and most importantly, photographers to help provide images that will reinforce the memories. I have an incredible number of photos, but here are a few that I hope Dylan will cherish after I'm gone.... 真抱歉过了这么久才发这个帖子:显然我有些忙。在得知我临终的诊断结果没多久,我就想到我最宝贵的遗产之一就是给我的孩子们留些回忆。 克娄依和娄更太小了,应该无法对我留下什么直接的记忆。迪伦是最大的一个,已经5岁了(12月就要6岁了),他应该有些模糊印象。这就带来一个工程学问题:怎样才能留下最清晰, 最刻骨铭心的记忆, 特别是对于一个喜爱动物的孩子? 答案:与海豚共嬉戏! 我 和迪伦在奥兰多共度了4天3夜的辉煌假期,在那我们看了魔幻王国(迪斯尼世界四大主题公园之一),在探索海湾(奥兰多的一个主题公园)与海豚共嬉戏(对我 们来说这两个地方都太不可思议了,提供门票及特别机会, 最重要的是,摄影师帮忙拍的照片将会加深记忆).我有很多很多的照片,但这里是几张我希望在我走后迪伦会珍爱的…… |
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| August 31 , 2007: Palliative Chemo begins
2007年8月31日 :开始姑息化疗 |
Yesterday I got my first round of Gemcitabine. We'll add Tarceva next week. In the first 36 hours, I've experienced zero side effects (yeah!). And tomorrow Dylan & I are taking a 3 day "Dylan and Daddy trip" to Florida to do a dolphin swim and see Mickey Mouse! 昨天我开始了我用剑泽的第一个疗程,下周就要开始加用爱罗替尼了。在最初的36小时,完全没有副作用呦呼!)明天我和迪伦和我要飞往佛罗里达开始3天的亲子旅行,我们要和海豚一起游泳还会去看米老鼠! |
| So What Happens Now?
现在如何? |
My wife, Jai, and I have had a long time to consider this possibility, and we believe it will be best for my wife and our children to be near family in Virginia, just south of Norfolk. Our plan is to head down over Labor Day weekend, so Dylan can start Kindergarden there Sept 4th. We can't close on a house that fast, but we will rent a beach house nearby as interim housing. This is obviously not how I wanted things to turn out, but my wife and I have no regrets; we did everything I could to maximize my odds. And we want to thank everyone who has so graciously helped us. The really weird part of all this is that I'm not depressed. I'm not in denial (I assure you, I am fully aware of what is going to happen), nor am I whistling in the dark, but after having felt crappy and sick for 11 months, to finally be fully healthy again is so exhilarating that it's a wonderful emotional buoy. So I am going to enjoy each day very fully, and play hard with my kids until I can't. I apologize to those of you I wasn't able to share this news with in person. Since many people have asked me the same questions, I have taken the liberty of answering them straightforwardly here: What will happen to the Entertainment Technology Center (etc.cmu.edu)? I actually stepped down from the ETC in January of 2006, and Don Marinelli has been solely in charge since then, so there's absolutely no impact there. What will happen to the Alice project (www.alice.org)? I have been the public face of the project for a long time, but the truth is that it had already grown to be a collaboration between several universities, with four or five main PIs. The Alice team is fully committed to the project, and to releasing Alice v3.0 (including teaching with Java and using the Sims characters) in 2008. I have met with Peter Lee, Dan Siewiorek, Randy Bryant, and Jared Cohon, all of whom have expressed how committed Carnegie Mellon is to ensuring the Alice project continues smoothly. Are you leaving Pittsburgh and Carnegie Mellon for good? Absolutely not. We are relocating the family quickly so we can start Dylan on the first day of Kindergarden, but I will be making trips back to Carnegie Mellon, and I am on email and reachable by phone. In fact, I'm scheduled to give a talk at Carnegie Mellon on Sept 18th. What should we not do? The experts have counseled us that we should not yet tell our children, so please keep that in mind if you see us in person, leave messages on our answering machine, etc. I want to close by once again thanking everyone at Carnegie Mellon, our church, and our friends and family, who have been so wonderful to us. We are very grateful, and we are sorry this story doesn't have a happier ending. 我的妻子洁和我有很长时间来考虑这种可能,并认为去维吉尼亚州诺福克南面,靠近其他家人,是最明智的选择。我们计划在(美国)劳动节的周末去,这样迪伦就可以在9月4号开始读幼儿园了。这么短的时间我们是没办法买房,但是我们可以先租一个海边度假房来过渡一下。 显然这不是我所希望的结果,但我们并不后悔;我们已经做了一切可以提高我存活机率的事情。我们感谢各位给我们的巨大帮助。 说 到这里,最不同寻常的应该是我并没有绝望。我并不是不敢承认(我保证我充分知晓什么将会发生),我也没有走夜路, 吹口哨, 虚张声势,但在承受病痛煎熬的11个月以后,又能重获健康是件多么令人欢欣雀跃的事情。所以我将在后面的日子里尽情欢笑,与我的孩子尽享天伦,直到那一天 --- 抱歉我不能当面把这些情况告诉你们每一位。在此,我就将很多人都关心的问题一并回答: 娱乐技术中心将何去何从? 我实际上从2006年1月就已经卸任。从那时,唐.麦瑞乃里就已经独自负责了,所以实际上不会有任何影响。 爱丽丝程序计划桨有什么影响?(http://www.alice.org/) 我 作为这个项目的官方形象已经很久了,但实际上这个项目已经发展为几所大学的校际协作项目,有4,5个学术带头人. 爱丽丝团队对这个项目负责到底,并将于2008年发布爱丽丝版本3.0(包括用Java教学和使用“模拟人生”游戏人物)。我已经见过皮特.李, 丹尼尔.斯维瑞克, 兰迪.布莱恩特和杰瑞.科恩,他们都表示卡内基梅隆将继续支持使爱丽丝计划的顺利发展。 你要永远地离开匹兹堡和卡内基梅隆么? 绝对不会。我们迅速的搬家是为了迪伦可以按时上幼儿园,打电话发邮件都可以联络到我,我还将时不时地回卡内基梅隆来。在9月18日我就将在卡内基梅隆进行一次演讲。 我们不要做什么呢? 专家劝告我们暂时不要让我们的孩子知道这件事,所以如果碰到我们, 或在电话答录机上留言之类的情况时请留意. 最后我还是要感谢卡耐基梅隆的各位,我们的教会,我们的家人及朋友,你们对我们关怀备至。我们非常感激,很遗憾没能让各位看到一个更为圆满的结局。 |
| July 23, 2007: Done with Johns Hopkins Vaccine 2007年7月23日:完成约翰霍普金斯疫苗治疗 |
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On Monday, I got the last dose of the vaccine at Johns Hopkins. Just like the previous two innoculations, I got six injections (two per thigh and two on my left arm), and they have swelled up like massive bee stings (8 inch wide welts). But no real pain; just a little itching. I'll go back in every six months for a booster shot, but that's a long ways off. Interestingly, this marks the last thing I can do to help myself, which is a little unnerving. I'm channeling that anxiety into starting to hit the gym with real vigor - building my body up in case there are more surgeries or chemo down the road.... 周一,我进行了最后一次约翰霍普金斯疫苗法的治疗。就像前两次治疗一样,我被注射了6次(大腿各2次,左臂两次),它们肿的就好像被一群蜜蜂蜇了一样(8英寸宽的伤痕)。但实际上并不痛,只是有些痒。每过六个月我要再回来进行增强注射,但那是很久以后的事情了。 有趣的是,这是我能做得最后一件帮助自己的事情,多少有些让人不安。我把这不安转化成开始到体育馆锻炼身体的别样热情,以备未来有更多的手术和化疗…… |
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| July 9, 2007: The Folks who are keeping me alive
2007年7月9日:我赖以生存的人们 |
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I thought you might like to see some photos of the folks who are working overtime to keep me alive. Here is my surgeon, Dr. Herb Zeh. He has performed hundreds of Whipple surgeries, and based on my experience, really knows what he's doing. Just as important, he gave me his email and cellphone info, and said to call him anytime, which he's honored. In addition to surgery, he conducts research on vaccine-based approaches, which could really make a difference: to support that research, please contact Kambra McConnel in the Development Department for the University of Pittsburgh Cancer Institute at (412) 623-4700 or email her at mcconnelk@upmc.edu . Donations also may be made payable to “UPCI/Pancreatic Cancer Research/Liver Pancreas Institute” (in the “memo” section of the check, if applicable, please note that your gift is given in my honor and for support of Dr. Zeh’s research) and mailed to: Development Dept., UPMC Cancer Pavilion, Suite 1B, 5150 Centre Avenue, Pittsburgh PA 15232 . 我想你们可能想看看那些加班加点拯救我生命的人们。这是我的外科医生,赫伯特.泽。他做过数以百计的胰十二指肠切除术(Whipple),从我的切身体会, 他确是有真才实学。特别是, 他给我了他的电子邮件地址及手机号码,他说他会随叫随到,并深感荣幸。 除了外科手术,他还研究可能会带来突破性进展的疫苗疗法. 如果要支持研究的话,请联络匹兹堡大学癌症研究院 (捐款细节参见原文). |
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| July 9, 2007: The Folks who are keeping me alive, part II
2007年7月9日:我赖以生存的人们 (二) |
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This is Dr. Robert Wolff, my primary oncologist and the person I met with regularly at MD Anderson. He also responds to email, and has the wonderful property that he doesn't sugar-coat anything. His medical experience mitigating side-effects and helping provide emotional perspective on the whole experrience were invaluable. (My five year old was very curious "Why Dr. Wolff wasn't an animal doctor. :-) 这是罗伯特.沃尔夫医生,我的主要肿瘤科专家,我们会定期在德州大学安德生癌症中心会面。他也会回复邮件,他最大的优点是坦率。他的医学经验无论对减轻副作用,还是对整个治疗过程提供情绪支持都是非常有益的。 (5五岁的儿子总是很好奇“为什么狼(沃尔夫与狼谐音)医生,不是兽医呢?”) |
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| June 28 , 2007: Second Round of Johns Hopkins vaccine
2007年6月28日:&;#32422;翰霍普金斯大学疫苗疗法的第二疗程 |
Yesterday I received the second round of the Johns Hopkins vaccine. No drama, no pain; just six needle sticks that are slowly growing into 8-inch across painless welts on my arms and legs - kinda cool, actually. Doesn't hurt a bit. 昨天我开始了约翰霍普金斯疫苗疗法的第二疗程。低调无痛;仅仅是6个针孔慢慢的在我的腿和手臂上长成无痛的8英寸的伤痕-实际上还真有点酷,一点都不痛。 |
| June 6 , 2007: Enough emotional roller coasters; how 'bout real ones!
2007年6月6日:情绪的过山车够了,来个身体的吧! |
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After all the recent emotional roller coaster rides, we decided it was time for some real ones, so off we went to Kennywood, Pittsburgh's classic roller coaster park. Today was special because it was the first roller coaster ride for our middle child, Logan (2 1/2 years old). Of course, you can't really see his face in this picture, as he's (naturally) got his hands in the air. A more complete set of photos of our day is here. 最近经历了足够情绪的跌宕起伏过山车,我们决定要体验一下真家伙,所以我们去了肯尼勿徳, 匹兹堡经典的过山车公园。今天也是个特殊的日子,因为我的二儿子娄更(2岁半)第一次坐过山车。 当然,你没办法在这张照片里很清楚地看到他的脸,因为(很自然的)他的手臂在空中挥舞。 点击这你可以看到我们几天的全部照片。 |
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One of my quirkier hobbies is winning stuffed animals at amusement parks, and it was comforting to see the cancer hasn't diminished my skills too much. In answer to your next two questions: 1) By tossing a softball into a milk can 2) It took four tries, at $2 a try. 我有个特殊的癖好就是在游乐园赢填充玩具,让人欣慰的是癌症并没有怎么降低我的水平。 回答你们接下来的两个问题: 1) 把一个软球仍到一个牛奶罐里 2) 一共试了4次,每次2美金。 |
| June 1 , 2007: It's a Cyst! And I get the vaccine...
2007年6月1日:是个囊肿!我接种疫苗了…… |
| Yesterday's MRI confirmed that what they had seen on the CT scan (see: Dodging Bullets, below) was definitely a cyst. (The MRI also showed that the other small lesion was highly unlikely to be cancerous). Whew!! I got the vaccine yesterday: six injections (two per leg, and two on my left arm), and a small carving of flesh for a biopsy on my right arm, big enough to require two stitches.. No significant pain or side effects. I go back once a day for 4 days for them to draw blood to measure how the vaccine is being absorbed. My Mom lives near Johns Hopkins and our entire family is visiting this weekend. The Johns Hopkins folks have been amazingly accommodating. Barbara Biedrzycki, the researcher, is coming into work on Sunday so I don't have to stay all next week. I have met so many wonderful people on this journey.
昨天的MRI确认CT扫描所见的确是个囊肿。(见下面:躲闪子弹)(MRI也显示其他小伤损很可能不是癌性的)。哟!!昨天我接种了&;;#30123;苗:6次注射(两条大 腿,左臂各两次),右臂切了一小片组织做活检,大到需要缝两针…并没有明显的疼痛或副作用。我要连续四天回来进行血样测试以测量疫苗的吸收情况。我母亲就 住在约翰霍普金斯附近,这周末我们全家要去看望她。约翰霍普金斯的工作人员非常友善。研究员Barbara Biedrzycki星期日还来加班,这样我就不用整个下周都留下了。这一段人生旅途真是让我见到很多大好人。 |
| May 30, 2007: Dodging Bullets
2007年5月30日:躲闪子弹 |
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Yesterday I went to qualify for the Johns Hopkins Vaccine. I knew this involved another CT scan, which is always a chance to get bad news. Only this time I actually got bad news. For details, click here. (it's a good story). Fortunately, this ended up being yet another false positive. These moments (there were two in Houston), are probably even harder than the chemo and radiation. As I said to my wife, Jai, I don't know how many more bullets I can dodge... This delays my starting on the vaccine by a few days, but it also reminds me how much I value every day with my family. 昨天我参加了约翰霍普金斯疫苗疗法的筛选。我知道这又要进行一次CT扫描,而每次都有可能得到坏消息。但这次,我真的得到了坏消息。详情,请看这里。(不错的故事) 幸运的是,这又是虚惊一场。这样的时刻(在Houston已经有两次了)真的比化疗放疗更令人煎熬。我对我的爱妻洁说我不知道还有多少子弹我能躲…… 这使我的接种疫苗推迟了几天,却让我意识到与家人的每一天对我都是弥足珍贵。 |
| May 25, 2007: I guess the stitches are holding...
2007年5月25日:缝合处还撑得住吧…… |
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My lovely wife Jai and I just spent 48 hours, sans kids, celebrating our 7th wedding anniversary at Nemacolin, where they have a zip line. I sent a copy of this photo to my surgeon, with the tagline "I guess the stiches are holding up okay"... 我和我亲爱的洁刚刚在纳玛科琳度过了48小时的二人世界来庆祝我们的结婚7周年纪念。那里有一条滑行索. 我把这张照片发给我的外科医生,附言:“缝合的应该还不错” |
| May 22, 2007: Gained enough weight to wear my wedding ring again!
2007年5月22日:增肥到可以重新戴上婚戒了! |
When this all began, I was 182 pounds. At my low point, I was down to 139, a 43-pound loss. One of the most depressing things about this was that I had to stop wearing my wedding ring, as it kept falling off and I was afraid I'd lose it. I'm now back up to 168 (and I really only want to get back to 175, not 182), and my wedding ring stays on again - yeah! 原来我的体重是182磅。在最轻的时候,我只有139斤,整整少了43磅。最令我难过的是我不能戴婚戒。因为消瘦它总是滑落,我怕不小心遗失了它。现在我又恢复到168磅(我可只想增肥到175磅,182就算了),婚戒不再滑落了,嘿! |
| May 15, 2007: My life as a coin toss...
2007年5月15日:生命如抛硬币... |
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| May 6, 2007: Playing Flag Football!?!?!
2007年5月6日:玩腰旗美式足球!?!?! |
Six days after being unhooked from the chemo, I was back on the field with my rec-league flag football team. First play of the game, I caught a 25-year pass over the middle. Granted, I was sucking wind the whole game, but damn it's good to be back on the field. 化疗结束后6天,我又重回我的休闲俱乐部腰旗橄榄球队。一开局, 我就接到一个中场的25码传球。当然整个比赛中我表现很糟糕,但重回战场的感觉棒极了。 |
| May 4, 2007: DONE WITH TREATMENT!!!!
2007年5月4日:治疗结束啦!!!! |
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On Monday, I completed my chemotherapy! They removed my PICC line, and it feels so good to have it gone! My family had a great celebration for me: here are the boys with the balloons. Chloe celebrated by taking some of her first steps! I have started exercising again, starting with bike riding. I have no stamina, but that will come back with time. My last CT scan was clear, and my CA19-9 is 19, well within the normal range. Meaning that - for now - there's no detectable sign of cancer in my body. I am still a looooong way from winning the battle, but every day I don't lose is a day closer to achieving long-term victory. I'm still somewhat weakened by the six months of chemo, but by June 1, I should be back to full health. I have already regained 18 of the 43 pounds I had lost. 周一我完成化疗啦!他们拿掉了我的外周中心静脉导管, 这感觉真好!我们全家为此进行了庆祝:这是举着气球的男孩们。克娄依用首次走路来表示庆祝!我又开始锻炼了,以自行车骑行开始吧。我现在精力不行,但那会 慢慢回来的。我最新的一次CT扫描没问题,我的肿瘤抗原指标CA19-9是19,完全在正常的范围内。这意味着至少目前我体内还没有癌症的迹象。当然要打 赢这场仗我还有很长很长的路,我会步步为营来争取长期的胜利。 因为6个月的化疗,我现在还有些虚弱,但到6月1日,我应该会完全恢复。我已经抢回了丢掉的43磅中的18磅。 我长期的存活机率仍然是45%,但我非常乐观的相信我将会在抛硬币中获胜。 |
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| Virginia Mason Protocol gets Replicated!!!!! 维吉尼亚梅森疗法被重复!!!!! |
When I had to pick a course of treatment after my surgery, the "standard of care" chemotherapy had a 15% 5-year survival rate (or an 85% death rate, if you prefer...). I gambled on the highly toxic "Virginia Mason protocol," which was getting about 45% of people to live to 5 years... but those results were based on only 100 people, all at the Virginia Mason Hospital. As a scientist, we don't like climbing out on those kinds of limbs. But in this case, as Janis Joplin sang, "Freedom's just another word for nothing left to lose." So imagine how thrilled I was when I discovered that Washington University in St. Louis had replicated these results! It's a great comfort to know that I bet on the right horse... as toxic as this treatment has been, it would have really been awful if I were to find out that it wasn't really a better approach. Now, it appears clear that it is. 在我的手术后进行治疗方法选择的时候,“标准的治疗”化疗有15%的5年的存活率(如果你愿意的话,也可以说是85%的死亡率……) 我把宝押在了高毒性的维吉尼亚梅森方案,毕竟它使大约45%的人活到了5年……但这数字仅仅是基于100名维吉尼亚梅森医院的患者的情况。作为科学家,我们不喜欢这样子的小样本。但此时此刻,正如Janis Joplin唱的那样:“自由是一无所有者的一切。” 所以不难想象当我发现在St. Louis的Washington大学再次证明这结果时我是如何的狂喜。知道押对了宝真是让我倍感欣慰……因为这个疗法是高毒性的,如果我发现它并不比别的疗法有效,那感觉真会糟透了。现在,我知道我做了明智的选择。 |
April 25 2007: limping across the finish line...
2007年4月25日:跌跌撞撞过终点...
Well, the mantra for this week is "chemo is cumulative." My energy level is down, and we also had our first-ever medical scare. Oon Monday, I experienced sudden nausea, hot flash, and stabbing chest pains. Fortunately, this happened at the doctor's office and they quickly ruled out serious stuff like heart problems. Near as we can tell, it was a nasty episode of heartburn; it happened again Monday night, but nothing since then. (Both times, antacids and rest made the pain quickly go away). In restrospect, this was the first "Oh My God What Is Happening" sort of event that we'd had -- given the complexity of my surgey and the extent of the chemo, we've been astoundingly lucky to not have had more episodes like this. And it would be my luck to have it happen at the doctor's, where we could quickly handle it!
这 周的主旋律是“化疗副作用的累积”。我的体能下降,也经历了第一次医疗恐慌。周一,我突然反胃,潮热并伴随剧烈的胸部刺痛。所幸这发生在医院,所以他们可 以迅速排除类似心脏病之类的问题。我们现在猜想,这是一次严重的反酸;当天晚上又发作了一次,但之后就没有了。(两次用制酸剂和休息让疼痛很快就缓解了) 到目前为止,这是接受复杂手术和化疗后,第一次让我们不知所措的事情。考虑到手术的复杂性以及化疗的强度,我们为没有更多这样的经历发生而万分庆幸。还好 是发生在医生的办公室,我们可以迅速的搞定它。
The GOOD NEWS: Next Monday, April 30th, at 2:30pm, I will be DONE with all treatment, and they will remove the PICC line I've had in my arm for 6 months. Then, it will take about a month for my body to restore itself to normal strength/energy/health. I can't wait!!
好消息:下周一,4月30日的下午2:30分,我的治疗就要结束了,他们就会从我的胳膊上取走已经带了6个月的外周中心静脉导管,然后就是1个月的恢复期,可以让我的身体恢复到原来的健康状态。我简直迫不急待了。
-------------------
April 17 2007: an email I wanted to share...
2007年4月17日:我想和大家分享的一份邮件……
Through all of this, I've tried very hard to stay positive, but it's very hard to know how one is really doing in situations like these. I received the following email, which gave me hope that - at least during the moment described - I am managing to enjoy life through all this...
经历这样的事情,我一直都试图保持积极的心态,但很难了解我做的究竟如何。我收到了下面的这封邮件,给我希望,至少在那一刻, 我还可以做到享受生命……
... I happened to have been behind you for a few blocks as you were driving from campus last night (Monday). Before I recognized it was you, I found myself thinking, "Gee that guy is really enjoying the moment.....driving down the road on a warm, early spring evening, top down, wind blowing through his hair, with a smile on his face.....probably headed home to a wife and maybe a little one or two......that's the way to live life.". And then you turned left and I recognized it was you. I then found myself thinking, "It's Randy! He looks so happy! And, in this most private of public moments (alone in his car, yet on the road for anyone to observe), I can't imagine anyone who IS living life more. No one is more deserving!". Thanks for sharing your happiness/your life so fully with so many of us.......on campus and in your car. You can never know how that glimpse of you tonight made my day, reminding me of what life really is all about...
…… 昨晚(周一),当你从校园驾车回来的时候,我碰巧就在你后面几个街区远。在我认出那是你之前,我就想:“那个家伙一定心情不错….开车在一个温暖早春的傍 晚,车蓬敞开, 风吹拂过他的头发,脸上挂满了笑容…大概家里正有娇妻爱子等着他回去……这才是幸福的生活.” 然后你左转的时候,我才认出那居然是你。我禁不住想:“居然是Randy!他看起来那末开心!在这样的私人空间, 公众场合(一个人在车里,但路上人人都能看到),我不能想象有谁能比这更好的"活着". 只有他才配!”感谢你在校园,在私家车上和我们这么多人尽情分享你的的幸福/你的生活。你恐怕无法想像今晚那一眼对我的影响,它提醒了我生活的真谛……
April 16 2007: another fine meeting with oncologist
2007年4月16日:与肿瘤学家的另一个愉快会议
Only 2 weeks to go and then I'm done - everything is going smoothly.
再有两周,然后就好了-所有的事都进展顺利。
-------------------
March 30, 2007: fine meeting with oncologist
2007年3月30日:与肿瘤学家的一个愉快会议
More good news... all blood work fine, and my doc and I feel that we're just "running out the clock" on getting the last month of the chemotherapy done. Most importantly, he has cleared me for flag football, water parks, and scuba diving once I'm done with the chemotherapy (apparently, these aren't questions he often gets from his patients!)
更多的好消息…血液一切正常,最后一个月的化疗,我的医生和我都觉得只是用完时间。更重要的是,一旦我完成了化疗,他将准许我打腰旗橄榄球、水上公园、和进行潜水。(很显然,他的病人并不常有这些问题!)
-------------------
2007年3月26日:一切正常
A week ago, I started the last 6 weeks of 5-FU chemo. I had blood work done today, and my WBC (white blood cell count, which indicates ability to fight off infection), hemoglobin (basically, the blood's ability to deliver oxygen), and magnesium levels were all acceptable.
一周以前,我开始了最后6周的5—FU Chemo.今天我完成了血液测试,我的白细胞指数(抗感染能力的标志),血色素指数(衡量血液运载氧气能力的&;#26631;志),和镁含量都在不错的范围内。
Most importantly, I've been gaining a little weight, and I'm up to 148 pounds. The doctor gave me megestrol, an appetite stimulant, which seems to be working. Although it's very strange to each like a pig all day and still barely gain weight, which is due to the fact that my body doesn't process food very efficiently right now. That will improve when I'm done with the chemo.
更重要的是,我体重上升了一点点,到了148磅了。医生给我开了能刺激食欲的甲地孕酮看起来起作用了。由于我现在的吸收能力不是很好,所以尽管每天像猪一样的吃却只增加了一点体重。这种情况当化疗结束后就会好转了。
-------------------
March 17, 2007: A note on staying positive
2007年3月17日:保持积极心态的赠言
Many things have helped keep me going throughout this process, mostly knowing how many people have been rooting for me. When I was first diagnosed, I was told that the overall odds for surviving for 5 years were only 3%. My immediate reaction was: "I don't believe in the no-win scenario." (Star Trek fans will recognize this quote from the second movie, Wrath of Kahn. In the film, Star Fleet cadets are faced with a simulated training scenario called the Kobayashi Maru where - no matter what they do - their entire crew is killed. When Kirk was a cadet at the academy, he reprogramming the simulation, because "he didn't believe in the no-win scenario."
很多事情都在帮我渡过这个难关,我也知道很多人都在支持着我。在我首次被确诊的时候,我被告知存活5年的机率只有3%。我的第一反应就是:“我不相信没有胜 算的战斗。”( 《星际迷航》的粉丝一定可以想起这是出自第二个影片”天汗的愤怒”。在影片中明星舰队的学员们经历一个名为Kobayashi Maru的模拟训练,无论他们如何做都不能逃脱死亡。那时候柯克船长还是一名在校学生,他改写了模拟训练,因为他坚信“不存在没有胜算的战斗”)
So imagine how uplifting it was when I received the following while at MD Anderson, just as things were getting rough: if you can't read the handwriting, it says "To Randy -- I don't believe in the no-win scenario -- My best, Bill Shatner"
所以当我在安德生癌症中心, 正当情况不容乐观时收到这个的振奋心情,:如果你看不清笔迹,他写的是“致兰迪-我不相信没有胜算的战斗—致礼比尔.夏特纳”
Bill had actually visited our lab a number of year ago, while doing research on I'm Working on That a book he and Chip Walter wrote regarding what science fiction from Star Trek had actually come to pass. He visited our lab and experienced a bunch of Virtual Reality.
实际上几年前,比尔和奇普.沃尔特在调研《我致力于此》, 一部关于《星际迷航》片中的那些&;;#31185;幻已变成现实的书,曾来过我们的实验室。他在参观的过程中还体验了不少虚拟现实。

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2007年3月13日:CT扫描完全正常!
My wife Jai & I just returned from MD Anderson Cancer Center in Houston where a CT scan showed no sign of cancer recurrence yet. There was also no elevation of CA 19-9 in my bloodwork. In other words, a clean bill of health.
This hardly means I've "won," but it means I certainly haven't lost yet! My 5-year survival odds are still 45%, but this means we're still "on the path" to winning. The tough part about these scans, of course, is that I need a "perfect record" - if the cancer re-appears, it's game over and I'll die, probably within months. So I will require some luck, but I done a lot of things at longer odds in my life than 45% .
I have six more weeks of chemo (5-FU) here in Pittsburgh. The drug fatigues me substantially (I lie down several hours each day to rest), but I can "be me" for short bursts of time -- all I really lack is long-term stamina. I routinely meet with people on campus, and I am doing a lot of work from home, and I read email throughout the day. I even travelled to Cincinnati to give a presentation on the Alice system at the SIGCSE conference last week. (Kudos to the Alice team, who are doing a fantastic job while I'm operating at 1/2 speed).
Keeping up with the kids (Dylan, Logan, and Chloe) is exhausting, but I play with them 10 minutes at a time, and then go rest, then iterate. The kids continue to hold up amazingly well, which is a testament to how hard my tremendous wife Jai has been working to keep things seeming normal through all this.
By June 1 (about a month after the chemo ends), the doctors say I will regain my normal energy level. Emotionally, the wonderful thing about this news is that it's the first time we've been able to point to a calendar and say "Randy will be back to his normal self, and we can plan activities for then." Even a small window of anticipated normalcy is a tremendous gift.
My next scan will be approximately 4 or 5 months from now (normally, it's every 3, but the research study - for whatever reason - has a long gap at this point between scans -- personally, I find that somewhat merciful!). Jai & I have elected to not publicize the exact scan dates in advance, since that just increases the number of people who know to worry, which doesn't seem productive. We will post the results after each scan.
Thanks again to everyone who has been so supportive; it has truly been inspiring how much people have been willing to do to help us.
It is a very happy day in the Pausch household!
-- Randy
我和我的妻子Jai刚刚从休斯敦的德州大学安德生癌症中心癌症中心回来,CT扫描的结果显示没有任何癌症复发的迹象。CA19-9在我的体内也没有任何的升高。换言之,完全健康.
这并不能说明我赢了,但至少我还没输!我5年的存活机率仍然是45%,这意味着我们还要为胜利不断奋斗着。我需要一个“完美”的扫描记录-如果癌症复发了,那我很可能在几个月之内就会死去。我需要些好运气,但我生活中还做过比这更没准的事。
在Pittsburgh 我进行了超过6周的(5-氟尿嘧啶)治疗。药物的作用使我体力很差(每天都要躺下休息好几个小时),但另一些时间我就还可以做我自己——我缺少耐力。我仍然定 期在校园里见一些人,在家里做很多工作,全天都会查收邮件。甚至上周我跑到了辛辛那提在美国计算机学会计算机科学教育专业组会议上做了一个关于爱丽丝系统的讲演。(荣誉属于爱丽丝团队的,在我不能全力以赴时他们做了出色的工作)
同孩子们(Dylan,Logan和Chloe)在一起真让我精疲力竭,我一次只和他们玩10分钟,然后就休息,这样周而复始。孩子们表现的非常好,我伟大的妻子Jai维持一切正常所做出的巨大努力的证明。
到6月1日(大约化疗结束后的一月),医生说我将重新恢复原来的体能。这个消息使我们能有个明确的时间概念,并第一次能说“兰迪将会重新回到他原来的生活,我们要为后续的活动订立计划”。即使能恢复原状的一点小小的希望在此刻也是丰厚的礼物。
我下次的扫描大约在4或5个月之后(一般,应该是每三个月的,但研究,不管什么原因啦,在两次扫描见有些差距-就我而言,我还是喜欢这样子的!)我和Jai决定不提前公开下次的扫描日期,免得大家徒增担忧。在每次扫描结果出来后我们会在此发布的。
非常感谢各位的大力支持;知道有这么多人乐于帮助我们,真是莫大鼓舞。
今天对于兰迪一家是快乐的一天!
--兰迪
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update from Randy on March 1:
兰迪3月1日更新:
Continued good news: I was disconnected from the 5-FU today.
I get 2.5 weeks off, then another 6 weeks of 5-FU then all treatments are done!
On Monday, my bloodwork was good: hemoglobin, white blood cell, and
magnesium levels were all acceptable.
Fatigue is still making me move at 1/2 speed, and the GI problems
(mostly intestinal pain and diarrhea) persist, but these are both well
known side effects of 5-FU, so we hope they'll go away starting in May
(the 2.5 weeks break is probably not long enough to my body to "bounce
back" in this regard).
Oh, and it appears our kids have pink-eye. Fortunately, that's not a
big deal, even if I get it.
另一个好消息:今天我结束了5-氟尿嘧啶。我有两周半不用做这种治疗,然后再完成6周5-氟尿嘧啶的治疗,我所有的治疗就都结束了!周一,我的血液一切正常:血色素,白细胞,镁含量一切都正常。
虚弱仍然让我行动迟缓,并伴随持续的肠胃问题(腹痛和腹泻),但这都是5-氟尿嘧啶的通常的副作用,所以我们希望这些在5月可以消失(两周半的休息大概没办法让我的身体复原)。
噢,我的孩子们可能得了红眼病。好在即使我被传染问题也不大。
-----------------------------------------------------
February 19, 2007 - Update
2007年2月19日-更新
Today's news is all good - both my white blood cell count and my
hemoglobin count went *up* in the last week, so my body is working hard
to repair itself, even while I'm still undergoing the 5-FU chemo.
In 9 days, I will be done with the first 5.5 week session of 5-FU.
Then, I get 3 weeks off, with no fannypack or tube (which means I can wrestle
much more aggressively with the kids!).
Fatigue goes up and down wildly on a day-by-day basis - last Friday I
worked a full day, which felt really good, but spent much of the weekend
resting horizontally. Today I am strong enough that Jai & I will be
going away for an overnight mini-vacation, so she can get a tiny break
from having to take care of me and three kids.
And it's sunny!!
今天都是好消息-上周即使是在我进行5-氟尿嘧啶阶段,白细胞指数和血色素都在上升,这意味着我身体的免疫系统在自行修复。9天后,我就会完成第一个为期五周半的5-氟尿嘧啶治疗。然后我就可以不带着腰带包或管子,休息3个星期(这样我就可以和孩子们玩得更尽兴了!)
每天的疲劳变化无常-上周五我工作了一整天,感觉真好。可周末多是平卧位休息,今天我体力不错,我和洁要去享受迷你通宵假期,让她可以从照顾我和3孩子们的重任中解脱一下,喘口气。
阳光明媚!!
----------------------------------
Update from Randy Pausch 2/9/2007
2007年2月9日
更新
I've been getting feedback from Cleah that people want more frequent
updates, so I'll try to provide Cleah with an update each week.
This week brings great news - both my overall energy level and GI tract
have noticably improved, which has been fantastic. I am spending less
and less time in bed resting, and more time sitting in a chair working
from home, or even venturing outside the house for trips. I am still
nowhere near "normal," but I am getting out of the house each day.
The whole family made a brief appearance at last night's SCS event at UMPC
SportsWorks.
Today, I was able to go out to breakfast with my wife Jai and eat a
fairly normal meal, and not have intense gut pain afterwards, which is
new, and greatly appreciated. So it appears that I am still healing up
from Houston more than I am being broken down by the 5-FU chemo I'm
currently on. Pittsburgh has been bitterly cold, but
uncharacteristically sunny the last week, and the sunshine has been most
welcome!
Oh, and in a stunning example of "kick 'em while they're down," while I
was in Houston, my domain registration for www.randypausch.com expired,
and somebody in Slovakia grabbed it an held it for ransom. Thanks to
Gabe Yu for his help in my getting it back.
Like all of us, I was saddened to hear the news of Ken Kennedy's passing
from pancreatic cancer (http://tinyurl.com/yudcpn), and of Jim Gray's
presumed loss at sea (http://tinyurl.com/2hshgw). Jim Gray was on my
thesis committee and was truly one of the most exceptional people I have
ever met. I, like all of us, are hoping against hope that he will still
be found.
从Cleah那里得知大家希望我更新得更勤一点,我尽量每周更新一次。
这周有天大的好消息-不管是我的体能还是我的胃肠都有十分显著改善。我卧床休息的时间越来越少,在家办公的时间越来越多,甚至都尝试外出。我还不能说“正常”,但每天我都会跑到户外。全家出席了昨晚在卡内基科学中心在匹兹堡大学医疗中心中心SportsWorks的活动。
今 天我同我的妻子洁一同外出享受一顿正常的早餐,之后并没有任何强烈的肠部痛感,这真是个值得感激的新现象。看起来我不太像一个正被5-氟尿嘧啶折磨的人, 倒更像个从休斯敦回来恢复的人。匹兹堡一直寒风凛冽,但上周天气出奇的晴朗,阳光总是被人们欢迎的么!
哦,真是“屋漏偏逢连夜雨”的另一个好例子,当我在休斯敦的时候,我的注册域名http://www.randypausch.com/过期了,有个斯洛伐克的家伙得到了它并用敲诈我。真是感谢Gabe Yu帮我索回了它。
和大家一样,我听到Ken
Kennedy死于胰腺癌的消息和Jim Gray被判断为海上遇难而很难过。Jim
Gray是我论文委员会中我见过的一位十分与众不同的成员。我们大家都抱最后一线希望最后可以搜寻到他。
----------------------------------
Update from Randy on Jan 31, 2007:
兰迪2007年1月31日更新
It's now been a month since I finished the Houston-based (MD Anderson
Cancer Center) portion of the treatment. The hardest part is over!
I want to thank *everyone* who has been so helpful, in so many ways, to
me and my family: the encouragement and logistical support has made it
possible to undertake this very challenging path, and we are very grateful.
Being home with the family has been wonderful, although my fatigue (see
below) has been a challenging match with 3 pre-school aged kids and
their energy levels! Here's a picture of the little rascals...
Nine days ago I started the Pittsburgh-based chemotherapy that lasts
until the end of April (5.5 weeks of a drug called Fluorouracil, or
"5FU", 3 weeks off, then 5.5 weeks of it). [Nerd factoid: this is
delivered as "continuous infusion," via a pump I wear in a fannypack.
The pump was invented by Dean Kamen, who later invented the segway
scooter]. This portion of the treatment is not nearly so bad (in
Houston, I had this drug, plus interferon, plus cisplatin, plus daily
radiation). In fact, I am still recovering more from the Houston
experience than suffering from the chemo they are giving me now - the
Houston chemo/radiation depleted my blood (specifically, my hemoglobin
and magnesium), so I'm still very tired much of the time - I sleep 9-10
hours/night, and spend some portion of each day lying in bed. My
digestive track is still partially road-kill, but the pain from that is
subsiding slowly.
Blessedly, the 24/7 nausea, which lasted a full 3 weeks after Houston,
finally went away, and I'm (very slowly) starting to put weight back on:
I am now up to 147, from a low point of 140.
For the next few months, I'll be relatively weak, but after that I
should return to full health (modulo the minor structural changes to my
GI track from the surgery itself - I've permanently lost 1/3rd of my
stomach, a few feet of intestines, my gallbladder, and 1/3rd of my
pancreas -- so you'll be seeing me eat *real* carefully from now on!).
The good news is that the Houston chemo/radiation, while grueling, in
most cases does not do long-term damage to the body.
The crucial part of all this is that I have been able to stay "on
schedule" with all the treatments so far, and that is the key to
increasing my long-term chances. Right now, there's every reason to
believe that I have a roughly 50-50 chance of surviving to 5 years;
while they'll never used the word "cured" for me, when I make it to 5
years, the odds of re-appearance really drops.
50-50 odds are much better than most folks with pancreatic cancer ever
get to, and I know which way I'm betting!
Thanks again to everyone for all your help and support.
自从我完成休斯敦的德州大学安德生癌症中心部分的治疗已经一个月了。最艰难的部分已经过去了!
我要对在各个方面给我和我的家人给予莫大帮助的*每一个人*表示感谢:鼓励和支持使我们安然度过了这特殊的艰难时期,对此我们非常感激。
和 家人团聚真好,尽管我的疲惫在面对3个学龄前精力充沛的小家伙真是有些招架不住。这是的一张淘气鬼们的照片……
9天前, 我开始了在匹兹堡的化疗,这样持续到4月底(五周半的叫5-氟尿嘧啶的药物治疗,或称为5FU,休息三周,然后再来五周半) [学究典故:这是通过装在我腰带包的一个泵进行“连续输液”。这个泵由Kamen院长发明,之后他又发明了塞格威人体运输机]。这部分的治疗并没那末糟 糕。(在休斯顿,我要服药,用干扰素,顺铂,还要每天放疗)。实际上,我更多地是处于从休斯顿的疗程中恢复过来,而不是经受目前他们给我做 的化疗-休斯顿的化疗和放疗耗尽了我的血液(特别是在血色素和镁),所以大部分时间我还是很疲惫-我每天晚上要睡9-10小时,白天还要一些时间卧床休 息。我的消化系统仍然有一部分不能工作,但这部分的疼痛在逐步缓解。
幸运的是,从休斯顿回来后无时无刻且已经持续了整整3周的的反胃终于消失了,并且我开始(缓慢的)增重了:从最低点的140磅,现在我已经147磅了。
接 下来的几个月,我还是会很虚弱,但在那之后我就会回复完全的健康了(除了手术造成的些微消化道结构改变 -我被切除了1/3的胃,一段肠子,胆囊,和1/3的胰腺-所以你从现在开始就会看到我“小心翼翼”的吃!)好消息是休斯敦的放疗/化疗,虽然难 过,但大多数情况并不会对身体造成长期的伤害。最重要的是到目前为止我所接受的一切治疗都按预期计划进行,这是能增加我长期存活率的关键。现在,有理由相 信我可以有大概50%的概率可以活到5年;虽然他们还不能“治愈”我,当我真的能活到5年,再复发的机率就很小了。
一半一半的机率已经比大部分的胰腺癌患者要好太多了,我了解我会把注押在那里!再次感谢各位的帮助和支持。
Babysitters Needed Jai is looking for child care help on Saturday mornings to go on outings and Sat/Sun around the dinner hour. If anyone knows of someone, please let me know. Cleah@cs.cmu.edu or 412.268.9656
洁在找周六早上和在周末两天的晚餐时间可以照顾孩子的人,如果你知道谁可以,请联络我。Cleah@cs.cmu.edu 或者412.268.9656
----------------------------------------------------------------------------------
Randy is to begin his chemo this Monday, January 22, 2007.
兰迪这周一开始他的化疗。2007年1月22日
----------------------------------------------------------------------------------
December 30th, 2006
2006年12月30日
Cards can be sent to their home address.
4932 Ellsworth Ave. Pittsburgh, PA 15213
Update on Randy Pausch from Randy as of January 2, 2007
I can very proudly say I have completed the treatment. There is a ceremonial
bell one rings and I have attached a photo (I’m a lot skinnier; down from 182 to 147).
As for the experience itself, well, let’s just say that passing the
theory qualifier in 1985 is now the *second* hardest thing I’ve ever done…
I return to Pittsburgh (December 30th)today. The side effects(fatigue that keeps
my bedridden, and constant nausea) will persist another 2 weeks or so as
the chemo and radiation slowly work their way out of my system. But the key
part is that I was able to *receive* all the treatment (many patients have
to have it suspended or terminated due to the toxicity). So that means I’ve
maximized the odds off getting the benefits of the treatment.
卡片可以直接 寄到他们家里4932 Ellsworth Ave. Pittsburgh, PA 15213 兰迪.波许本人的最近更新,2007年1月2日. 我可以很自豪的说我完成了全部治疗。这是庆祝的钟声,我贴了张照片(我有点皮包骨了从182磅到147磅)。至于经历本身,嗯,我得说1985年通过理论 资格考变成我所做的是第二难事了……
我今天回到了匹兹堡(12月30日)。副作用(疲惫使我一直卧床的和持续的反胃)大约还要再持续两周,当化学疗法和放疗作用慢慢过了就会好了。但关键的是我可以接受全部治疗(很多病人因为高毒性必须延缓或者停止治疗)。这意味着我已经得到此项治疗最大利益了。
----------------------------------------------------------------------------------
General Update: December 20, 2006
Randy will be finished with his reatment December 29 or 30th. He will be returning to Pittsburgh where he will continue treatment and focus on recovery. Jai will be returning with the children December 30th.
一般更新:2006年12月20日
兰迪将在12月29或者30日完成治疗。他将回到匹兹堡继续治疗和休养。洁和孩子们12月30日回来。
---------------------------------------------------
November 28, 2006
2006年11月28日
Randy is almost at the half way point. This Friday he will have completed his first half of the chemo treatments. After his treatment on Friday he will take Saturday to recouperate and then on Sunday head to Norfolk to spend a week with his family. He then returns on the 9th of December and begins the second regiment. He is having the usual side effects from the chemo but the Doctors are trying different things to help him feel better and keep weight on. November 22, 2006 Yesterday proved to be not such a great day. The treatment made Randy quite ill. He spent lots of time sleeping but also his body was sent into deep chills where he could just not get warm. His body just shook. It was not a restful day or night. November 21, 2006 Randy is continuing to do well. Tomorrow he will be half way through his treatment. He has been able to handle the chemo reasonably well with few side effects. He really appreciates your cards and notes. Each one brighten his day. He has been able to get on line and read email so much Jai is worried that his computer may start smoking. Keep him in your thoughts. ADDRESS:
Randy Pausch
Rotary House
1600 Holcombe
Blvd Houston, TX 77030
兰迪快要完成一半了。这周五他将完成化疗的前半段。周五的治疗结束后他周六将修养 ,周日去弗吉尼亚诺福 克与家人共度一个 星期。然后12月9日回来开始下半段的治疗。他出现了通常的化疗副作用反应,但医生在尝试不同的方法让他感觉好些并增加体重。
2006年11月22日.昨天不是一个好日子。治疗使兰迪相当难受。他花了很多时间睡觉,而且他的身体发冷,没法让他感到温暖。一直打寒颤。今天一昼夜都不平静。
2006年11月21日.兰迪一直做得不错。明天他就完成一半疗程了。他对化疗和副作用的反应都还好。他感谢你们的卡片和字条。这些鼓励让他心情舒畅。他能化很长时间上网和读邮件了以至于洁都担心电脑都要冒烟了。别忘了他。地址:(略).
---------------------------------------------------
November 16, 2006
2006年11月16日
Day three of the chemo and Randy is doing well. He had a unrestful night
but is able to rest during the day. He and Jai are just taking it one day
at a time. Their book of how to play cards is coming in handy. They have
learned a couple of games to pass the time.
3天的化疗, 兰迪还不错。他晚上不能安睡,好在白天可以休息。他和Jai不急不躁.他们带的关于如何打牌的书很有用。他们学了不少牌戏来打发时间。
--------------------------------------------------- November 14, 2006
2006年11月4日
Yesterday evening Randy underwent his first round of chemo the treatment
began around 6pm and finished around 1:30am. It was a late night! Today Randy is
feeling good, was able to eat breakfast. He was reading and responding to email
when I talked to Jai.
The nurses told them that it takes a little while before the
effect of the chemo begin.
So the first day is finished and Randy is in good positive spirts
and actually feeling pretty good.
Stay tuned for updates.
Cards can be sent directly to Randy
Randy Pausch
Rotary House
1600 Holcombe Blvd.
Houston, TX 77030
昨晚,兰迪进行了第一轮的化疗,6点开始一直到深夜的1:30.今天Randy觉得不错,可以吃早餐,当我和洁讲话的时候,他在查收并回复邮件。护士告诉他们化疗的作用要过一会儿才会有表现。&;#36825;样过了第一天,兰迪觉得挺不错,态度也很积极。
留意更新。
卡片可以通过下述地址直接寄给兰迪.
---------------------------------------------------
Nov 7th update from Randy:
兰迪更新于11月7日
My chemo/radiation was supposed to start yesterday (Nov 6th),
but has been delayed a week and will start Nov 13th. As a result, I'll now be here
through Dec 30th (or longer, if there is schedule slip, which can happen).
The reason for the delay is that twice in the last 10 days, I was told “we’re seeing a mass
on a scan, and it’s possible that your cancer has already spread.” The first time was a spot
on the lung. The second time was on a spot on the liver.
Fortunately, in both cases subsequent tests showed that my cancer did *NOT* spread.
The good news is that I’m now the most scanned man in America, so we *really* know it
hasn’t spread yet. If the cancer had spread to another organ, there’s no hope
for cure, and I’d probably have 3-9 months to live. So you can imagine that going
through two rounds of "waiting for confirming tests" was a little ... um... stressful.
Although emotionally exhausting, these detailed tests are just another indication
of the thorough, high quality treatment I'm getting here at MD Anderson. This place really
deserves its reputation, and the doctors and staff have all been knowledgeable, accessible,
and incredibly humane. Plus, they have wifi throughout the hospital, so I'll be able to work
on the laptop *while* receiving chemotherapy -- how cool is that!
I'm spending this week resting and trying to gain as much weight back as possible before
the chemo/radiation (and its inevitable weight loss) kick in. I started this all
at 182, and I'm now 157. Livable, but heavier would be better.
Thanks again to everyone who has expressed concern on my behalf: that has
been a great source of comfort and inspiration for me.
-- Randy
我 的放疗/化疗本该在昨天开始(11月6日),但要推至一周到11月13日才开始。所以,我要在这一直待到12月30日了(也许更久,计划再更改的话)。推 迟的原因是在过去的10天里我两次被告知:“我们通过扫描看到了一个肿块,你的癌细胞也许已经扩散了。”第一次是肺部的一点,第二次是肝脏的一点片子。所 幸,两次后续的测试都显示我的癌细胞并没有转移。好消息是我现在恐怕是美国被扫描次数最多的人,所以呢我们都"确认"癌细胞并没有转移。如果癌症转移到其 他脏器,治疗也就无任何希望了,而我大概也就会剩下3-9个月的生命。所以不难想象,经历两次“等待确认结果”真的是有点……嗯……郁闷. 尽管精神上疲惫不堪,但详细的测试还是全部通过了,我得以在安德生癌症中心进行高效治疗。这地方真是名副其实,医护人员都知识渊博,平易近人,绝对的人道。而且,医院里还有无线网络,所以我可以一边治疗一边用笔 记本工作-这太酷了。
这周我基本都在休息并在化疗/放疗开始前尽量增肥(化疗/放疗绝对会让我变瘦),我最初182磅,现在157磅。还行,但总归越健康越好。
再次感谢各位对我所表示的关心:这一切对我而言都是巨大的安慰力量和精神源泉。
-兰迪
---------------------------------------------------
Update from Randy Pausch on Oct 27th
兰迪.波许 10月27日更新
Dear Friends and Colleagues,
First, I want to say how touched I have been by the outpouring of help and sentiment since my diagnosis. Words alone fail to express how grateful my wife Jai & I are to all of you.
My surgery went very well; they got all of the tumor. Most importantly, I have found a better option for post-surgical treatment. When I was first diagnosed (original message below), I was told I would have only a 10-20% chance of 5-year survival, even with a successful surgery that removed all the tumor. Researching like crazy, I found an experimental treatment that is achieving 45% 5-year survival rates: a true breakthrough. On Oct 31st, I leave for MD Anderson Cancer Center in Houston, where I will be receiving treatment until Christmas. Then, the last 5 months of treatment will be administered back in Pittsburgh.
The treatment in Houston is a seven week regimen of *extremely* toxic chemotherapy/radiation. The phrase "take you to the brink" has been used by several doctors describing the process. While not pleasant, this seems like a small price to pay for the increased survival odds. My wife Jai will be with me in Houston during my treatment, while our three kids are with her family in Norfolk, Virginia. The five months of treatment once I ’ m back in Pittsburgh is relatively tame, and I can resume a somewhat normal lifestyle in January.
From Nov 1st through Dec 22nd, I can be sent physical mail at:
Randy Pausch
Rotary House
1600 Holcombe Blvd
Houston, TX
77030
I will also be on email. Thanks again to all who have been so supportive in so many ways as I continue this battle, which I fully intend to win!
-- Randy
亲爱的朋友们和同事们,
首先,我想说自从我被确诊以来,我得到了大量的帮助和慰问。言语实在是不能完全表达我和妻子洁对各位的感激之情。
我 的手术进行得很成功;他们摘除了全部肿瘤。更重要的是,我发现了一个更好的治疗选择。当我被确诊的时候(最初的信息如下),我被告知即使手术成功的移除所 有肿瘤,也只有10~20%的概率可以活到5年。在一通疯狂搜索后,我发现了一种可以使5年的存活率达到45%的实验疗法:一个真正的革命。在10月31 日,我要去在休斯敦的德州大学安德生癌症中心,在那我接受治疗到圣诞节。然后,最后5个月的治疗可以回匹兹堡。
休斯敦 为期7周的疗程是毒性很高的放疗/化疗。数名医生用词组“推至极限” 来描述这一过程。尽管不舒服,但这是提高存活率的小代价拉。我的妻子Jai将在休斯敦陪我完成全部治疗,3个孩子同她的家人一起呆在弗吉尼亚诺福克。5个月的疗程后,我回到匹兹堡后的五个月治疗相对温和,到1月份生活就该基本正常了。
从11月1日到12月22日,信件请寄:(略).
我也可以收电子邮件。再次感谢多方支持我战斗的各位,我将力争胜利。
-- 兰迪
-------- CONTEXT: MAIL SENT IN EARLY SEPTEMBER -------------
Dear Friends and Colleagues,
I apologize for this mass email, but I know in situations like this that rumors and misinformation spread quickly and a mass email is the best way to ensure correct information for everyone.
I have recently been diagnosed with pancreatic cancer (adenocarcinoma).The good news is that I'm one of the 20% of pancreatic cancer patients who are viable for surgical removal of the tumor, and I'm scheduled for surgery
on Tuesday, Sept 19th at UPMC Shadyside. It's a major surgery, where they will remove the tumor (which is about 3mm in diameter), my gallbladder, part of my pancreas, part of my small intestine, and possibly part of my stomach. I will be in the hospital 2-3 weeks, and then another 4 weeks of bed rest at home. At that point, I'll be <;span lang="en-us" xml:lang="en-us">physically 100% again. If the surgery removes every last cancer cell, I win. Otherwise, eventually the cancer will recur. Statistically, the long-term prognosis is not rosy; only 10-20% of people who have the surgery survive to five years. Needless to say, I intend to be one of the lucky ones who sticks around! The median age for this disease is 66 and so there is some reason to believe my odds will be better than the typical patient's (I'm 45 and in good physical shape), so they can hit me with more aggressive chemo and/or radiation after the surgery. My wife Jai and I are focusing right now on the logistics of taking care of our children (Dylan, 4; Logan, 2; and Chloe, 4 months) during the 2 months that I am sidelined. This is obviously not good news, but I wanted people to hear this from me, and to have accurate information. I have only 6 days remaining to do a ton of logistics before the surgery, so please understand if I'm unable to respond to email or phone in the short term. Please feel free to share this message with anyone you see fit.
-- Randy
-------- 背景:9月初寄出的邮件-------------
亲爱的朋友和同事们,
很抱歉发这封群体信件,但我知道在这样的情况下流言和谣传会流传很快,一封群发的邮件将是让每一位都得到真实信息的最佳办法。
我 最近刚确诊为胰腺癌。好消息是我是那20%可以通过手术移除癌细胞的病患之一,而且我已经预约了手术,白日期是9月19日,周二在UPMC Shadyside。它是个大手术,他们将切除肿瘤(直径3毫米),切除胆囊,一部分胰腺,一段小肠还可能有我的一部分胃。我会住院2到3周,然后是大约 4周的在家卧床休息。那时我就又会健康如常了。如果手术成功的切除了所有的癌细胞,那我就赢了。否则,癌症还会复发。统计表示,长期的后续预期并不乐观, 仅有10%~20%的人可以通过手术活到5年。不用说,我想成为那些幸存者。病患的平均年龄是66岁所以有理由相信我的机率要比普通病人好些(我45岁且 身体不错),所以他们可以对我在手术后采用更困难的放疗和化疗。我的妻子Jai和我目前正在考虑照顾孩子(Dylan, 4岁; Logan, 2岁; Chloe, 4 个月)的后勤问题,在2个月内我会退居二线。这很明显不是好消息,但我希望人们从我这里得知这个消息,获得正确的信息。在手术前我还剩6天的时间完成大量 后勤准备工作,所以如果我没能立刻回复你的邮件和电话请谅解。请将这个消息转达给您认为合适的任何人。
-- 兰迪
October 5, 2006 2006年10月5日 Randy and Jai have a lease on the rental house on Northumberland that they've been in while their house was being remodeled. They can get out of the lease if they find a new tenant for a 12 month lease. Please send email to jkh@cs.cmu.edu if you know of anyone who might be looking for a nice house close to CMU: Spacious 5 bedroom, 4.5 bath Victorian home in highly desirable "North of Forbes" section of Squirrel Hill. Eight minute walk to Carnegie Mellon, one block from public golf course. Huge living room, full basement, fireplace, central air, two car garage,sheltered back yard with visual privacy. Great neighbors. $2,000/month.
兰迪 和洁在他们的房子装修期间,在Northumberland租了一幢房子。现他们需要找一位新房客转租以满足12个月的租约。如果你知道任何人需要一 处靠近CMU大学不错的房子,请发邮件到:jkh@cs.cmu.edu:5间大卧室,4.5卫 维多利亚式家居, 位于上好的松鼠山北福布斯区。 步行到Carnegie Mellon8分钟,离公共高尔夫会所一个街区。大客厅,全地下室,壁炉,中央空调,两车库,后院遮挡有隐私。邻居和睦。2000美金/月。
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Additional Information
Randy's surgery was called the classic Whipple's operation. This link explains what they did.
附加信息
兰迪的手术是称为经典Whipple式手术。这个链接解释手术详情。
手术
Randy Pausch
Surgery Scheduled for September 19, 2006
University of Pittsburgh Medical Center (UPMC) Shadyside
兰迪.波许
手术定于2006年9月19日
匹兹堡大学医疗中心 (UPMC) Shadyside
If you would be willing to help out in some way please let me know. I will keep a list of helpers should an occassion arise. Email me Cleah@cs.cmu.edu.
This page will be updated often. Please keep the link and check it or call me at 8x9656 for the latest information.
Items can be mailed to my attention:
如果你愿意尽一份力请联络我。我将把所有的帮助者列个清单备用。电子邮件地址:Cleah@cs.cmu.edu。
本网页将经常更新。请保存连接关注或者拨打我的电话8x9656,了解最新信息。
物件可以寄给我:
Cleah Schlueter,
School of Computer Science,
Carnegie Mellon University,
5000 Forbes Avenue, 225 Smith Hall,
Pittsburgh, PA 15213
September 19: Surgery is scheduled to begin at 7am. Randy will be in surgery for at last 6 hours. After surgery he will be in recovery for at least 4 hours. While in recovery there are no visitors not even his wife. So news will not be available until late Tuesday or early Wednesday morning. After recovery he will be in intensive care for several days. He will not be allowed visitors.
9月19日:手术定于早上7点开始。兰迪的手术将持续6个小时。手术后他至少要4个小时才能苏醒。在那期间任何人包括他的妻子都不能探访。所以直道周二晚上或者周三早上才会有新的情况。苏醒后他将会住到加护病房几天。还是不能见访客。
Things you should not do and things you can do: NO FLOWERS, NO FRUIT BASKETS, NO MEALS. Cards are welcome, reading material, gift certificates or donations to the Hillman Cancer Center (http://www.upmccancercenters.com/giving/index.html).
不要做和可以做的:不要送鲜花,不要水果篮,不要任何的餐点。欢迎卡片,阅读材料,Hillman癌症中心的捐赠或者捐款。(http://www.upmccancercenters.com/giving/index.html)。
About the Hillman Center:
The Hillman Cancer Center is an international leader in cancer treatment, research and care. The University of Pittsburgh Cancer Institute (UPCI) is the only center in western Pennsylvania with the elite Comprehensive Cancer Center designation from the National Cancer Institute. Working in tandem with UPCI are the UPMC Cancer Centers, the largest and busiest cancer center network in the US, treating over 37,000 new patients each year. The network includes 43 cancer centers throughout the region with the Hillman Cancer Center as its flagship.
关于Hillman中心:
Hillman 癌症中心是国际癌症治疗,研究和护理的领导者。匹兹堡大学的癌症研究院(UPCI)是宾夕法尼亚西部唯一由国家癌症学会指定 的,且汇集&;;;#20102;大量精锐癌症相关人才的中心。同UPCI合作的是UPMC癌症中心,这一全美最大的也是最繁忙的癌症中心网络,每年治疗超过37,000新病 患。这一网络以Hillman癌症中心为主跨地域的涵盖了43家癌症中心。
Cards should be dropped of to me in 225 Smith Hall or via campus mail to my attention [Cleah Schlueter].
卡片可以直接寄到225 Smith Hall给我或通过校园邮路给到我[Cleah Schlueter]。
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Here is the latest..........................
THE DAY OF SURGERY.........................TODAY
The operation began early this morning and once the Dr's got inside and took a look they were pleased to find that the cancer had not spread. They then continued the surgery to remove the tumor and whatever else had to come out. The latest update from the operating room, (1:35pm) Randy is doing well the surgical team is now reconnecting everything and the surgery will be at least 2 or 3 more hours.
More to come.......
这是最新的
今天是手术日
手术今早开始,当医生们开刀后,令人欣慰的发现了癌细胞并没有扩散。然后他们继续手术切除肿瘤和其它的一些必要切除的。手术室的最近更新,(下午1:35)兰迪还不错,手术团队目前在连接缝合,手术还要再持续2或3个小时。
待续……
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Tuesday, September 19th - 4:30PM
Randy is out of surgery and the doctors are very pleased the surgery went well and Randy is resting in recovery and soon will be moved to Intensive Care. He will be in Intensive Care for a couple of days.
More to come.......
9月19日 周二 下午4:30
兰迪手术完成了,医生说手术进行得很顺利,兰迪还在恢复间休息,很快会被转移到加护病房。他将在加护病房住一些日子。
待续……
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Wednesday, September 20th
Randy is in intensive care and is awake, alert and being kept free of pain. His best friend from High School is here and keeping him company. If he continues to do so well within a day or two he will be moved to a regular room.
Jai is visiting at least 3 or 4 times a day between child activities and naps. No other visitors are allowed at this time.
9月20日,周三
兰迪已经转移到加护病房了,他醒了,神智清晰并保持无痛。他高中最好的朋友在那陪着他。如果他在接下来的1,2天都保持这么好的状态的话,就可以转到普通病房了。
洁每天在孩子们活动间隙和午睡的时间至少来看3,4次。目前其它的访客还不允许探视。
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Thursday, September 21
Today Randy is grumpy and a little uncomfortable. The second days after major surgery what more can I say. He is still in intensive care and connected to many devices. Grumpy is good.
9月21日,周四
今天兰迪脾气不好而且有些不适。大手术的第二天,没什么好说的了。他仍然住在加护病房身上连着很多仪器。有脾气是好现象。
Thursday - September 21
4:00PM - Randy is up and walking for the second time today. The doctor said he wanted to see him up at least 4 times. Two more to go : ) He is sitting up too.
So far he is not allowed any liquids by mouth just a damp sponge to wet the lips. However tomorrow they may try a thimble size amount of water.
The doctors are extremely pleased with his progress. They may even move him to a room tomorrow.
9月21日,周四
下午4点钟-兰迪起床并进行了今天的第二次散步。医生说想看到他至少起来4次。再来2次:)。他也坐起来了。
到目前他还不能用嘴进食任何流质只能用湿海绵润湿嘴唇。可是明天他们会试着给他一点水。
医生觉得他的进展很不错。他们可能明天就会转他到普通病房。
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Friday, September 22nd
Randy was moved to a less intensive intensive care. He is doing very well. He is up and moving around. He is doing so well. The doctors are extremely pleased with his recovery. Rumor has it that the original projected hospital stay time may be shortened. We just have to wait and see.
Stay posted.......!
9月22日,周五
兰迪被移到了次加护病房。他情况不错。他起床并来回移动。他情况很好。医生对他的恢复很满意。据说原定的住院时间可能缩短。我们翘首企盼。
持续关注!
More Great News!!!
As of Friday afternoon……
Randy is looking and feeling much better. He got his hair washed,
shaved and spent more time walking around and sitting in the chair then
in his bed. Several monitoring devices were also removed so it is much
easier to get around. His progress is outstanding.
更多的好消息!!!
周五下午
兰迪气色和感觉也好多了。他洗了头发,刮了胡子,花更多的时间走路,坐在椅子上然后在床上。有些(连在他身上的)监测仪器被移走了所以行动起来容易多了。他进步神速。
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Monday, September 25
Randy is doing very well. He is in good spirits, sitting up, and doing laps up and down the corridor. According to reliable sources he is eating whole foods (well, at last peas and mashed potatoes). He still get tired easily but all in all he is doing great.
PS: This eating has not worked out so well. He had a very bad night (Sunday).
9月25日,周一
兰迪不错。他精神状态很好,可以坐着,沿着走廊走走。据可靠消息,他可以吃完整的食物了(至少,豌豆和土豆泥)。他仍然容易疲劳但总之他状态真的不错。
附:吃饭消化的并不好。他晚上过得很糟糕(周日)。
Monday, September 25 - 4:00PM
Randy's not doing too well today. His stomach is not dumping fluids fast enough, so the doc put a tube down to his stomach through his nose and is pumping the fluid out to keep him from vomiting. They've reinserted the morphine iv to give him pain relief. All in all, it's been a rough 24 hours for him and he's wiped out. They might insert a feeding tube into his small intestines to give him some calories so he doesn't lose too much weight. We'll find out tomorrow if that's the way they'll go.
9月25日,周一-下午4点
兰迪今天不太好。他的胃蠕动的不够快,所以医生把一个管子从他的鼻子插到他的胃里帮助消化使他免于呕 吐。他们再次给他插静脉管注射吗啡以减轻他的疼痛。总之,这是个痛苦的24小时,他精疲力竭。他们可能给他的小肠插入一根管子给他提供一些卡路里以免他消 瘦太多。如果他们真要那样做的话,明天我们将会得知。
MONDAY - September 25
This is a VERY VERY VERY Important update. NO VISITORS!!!!!!!! Visitors may be harmful to his recovery. I know the updates on his progress have been positive but it is NOT OK to visit. He is not ready. He does have good days but if he gets too tired he then suffers greatly.
The family will let me know when visitors are allowed. Randy is doing well but still has a very long road to recovery.
Remember NO VISITORS means even you.
If you want Randy to know you are thinking of him send a card or note to my attention and I will make sure his wife gets it.
9月25日,周一
这是一个非常非常非常重要的更新。请勿来探访!!!!!房客可能对他的恢复不利。我知道他的进展看起来很乐观但还不足以接受来访。他还没有准备好。他现在还不错,但如果太累的话,就会很痛苦。
他的家人将会告知我访客可以进行探访的时间。兰迪不错,但还有很长的一段路才能恢复。记住,禁止探访意味着包括你。
如果你想让兰迪了解你关心他可以寄送卡片给我,我确保他的妻子可以收到。
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Tuesday, September 26 (one week)
Randy is having a good morning. Doc was in. Oxygen is good. Hemaglobin is still low but may come up today.
Still the family request NO VISITORS.
Click here to find information about another CMU project and a way to help fight cancer.
9月26日,周二(一周)
Randy早上不错。医生看过了。含氧量不错。血色素还是很低但今天可能好起来。他的家人还是要求不要来访。
点击这里了解CMU的另一个帮助与癌症抗争项目.
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Late Tuesday/early Wednesday, September 25/26.
The doctors are watching Randy's hemoglobin it is very low. They emptied out his stomach yesterday and monitoring the fluid intake and output. He is not eating anything just receiving fluids. He is feeling a little better but is very, very tired and still nauseous. He is just working on recovering and not much else.
Randy has not felt like reading or anything so until he has the strength to do so Jai is holding all his cards and emails. I am compiling all notes and email for him to read when he is feeling up to it.
Hopefully I will know more later today after I talk to Jai.
Remember NO VISITORS.
9月25日/26日,周二夜,周三晨
医生发现兰迪的血色素含量很低。昨天他们排空了他的胃,并监测他的液体出入量。他只靠输液,不进食任何东西。他感觉好些,但仍然非常非常疲惫并且恶心反胃。他全副精力都集中在努力恢复。
目前兰迪还没有恢复到可以进行阅读之类的事情,所以Jai目前保管着他的一切邮件和卡片。但他感觉好些,我会把整理好的邮件和卡片给他看。
希望在今天与Jai谈话后得知更多的进展。
谨记:请勿探访。
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Wednesday, September 27th -
4:00pm:
Today Randy was walking around as directed by the doctor but he remains very tired. He still has the tube into his stomach via the throat to help with drainage. In general he is doing well. Today he was able to read all his cards and collected comments he has received. He was very happy to see them. He says thanks to everyone!
Remember at this point in time NO VISITORS.
9月27日,周三
下午4点
根据医生的指示,兰迪今天下地走了走,但他仍然非常疲惫。他还是插着胃管来辅助排除积液。总体来说他做得不错。今天他能阅读卡片和收到的话语了。他很高兴看到这些。他对各位都表示感谢!
谨记:此时依旧请勿探访。
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Thursday, September 28th
Today when Jai arrived at the hospital Randy's room was being cleaned and he was nowhere in sight. She found him walking down the hall doing his laps. This is good!
The Nasogastric tube or NG that was removing the contents of the stomach is out but he remains connected to the IV for liquids. He also still has a morphine drip or PCA(patient-controlled analgesia) for pain. He is now allowed to have liquids by mouth.
Today he seems better and to have a little more energy. He still tires easily. The family still ask that no one visit.
9月28日,周四
今天当洁到达医院的时候兰迪的房间已经被打扫过而且居然没看到他本人在房间里。她在大厅里发现他正在溜圈。好极了!
排除胃内容物的胃管以拔除但静脉通路还保留要输液。他为了止痛还在打吗啡点滴或病人自控镇痛。现在她被准许食用流质了。
今天他看起来好多了,体力似乎也恢复了一些。还是很容易累。他的家人还是要求不要探访。
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An eye witness account..... Randy looked really great today. He's not as tired and he is able to walk 8 to 10
laps around the floor at a time. But, his GI track is still off and he is still on a clear
liquid diet. He's been limiting his intake to keep his stomach from backing up. The surgeon
came by and said Randy was making good progress and instructed Randy to increase his fluids.
He said that this GI complication only occurs in 10% of the cases and always resolves. He said
there is a good chance the GI issue will resolve by Monday. There are also other things they
are watching like sugar and hemoglobin levels.
9月29日,周五
目击报告…
兰迪今天看起来非常 好。今天不是很疲惫,他一次可以在楼层转8到10圈了。但他的消化道还是不过关,并且还在食用流质。他尽量减少摄入使他的胃不致反流。手术医生说兰迪进展非常好,并建议他多喝液体。他说这种消化道并发症仅发生在10%的病人而且都会消退。他说消化道的问题有很大可能会在在周一消退。他们也在 监测血糖,血色素水平。
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Sunday afternoon the NG tube was removed from Randy's stomach. The liquids are not backing up and things seem to be working better. He has been able to eat some solid foods.
Randy is being released from the hospital and going home this afternoon. Other good news is that the biopsy done on the tissue around the repair came back as NEGATIVE. This is more wonderful news.
The doctors say his is right on track.
The family still request not visitors.
2006年10月2日,周一
周日下午,胃管被拆掉了。液体没有倒流,看起来一切都不错。他可以吃一些固体食物了。
兰迪今天下午就可以获准出院返家了。另外的好消息是活检显示修复处周围(癌症)阴性。这是更好的消息。
医生说一切都如所愿。
他的家人依旧要求暂不探访。
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Tuesday, Oct 3 rd .
Here is an email I just received from Randy:
I am very pleased to announce that I am home from the hospital! First, I want to deeply thank all those who have shown such concern for me, and especially to those who have offered help to Jai, who has been absolutely *amazing * dealing with 3 small kids and a hospitalized husband. She is an amazing woman.
My surgery has gone well, but it will be another 6 weeks until I am fully recovered; in the meantime, I will be resting heavily at home (I can only tolerate being out of bed 1-2 hours a day, and walking up a flight of stairs completely exhausts me). I ’ m not allowed to lift anything heavier than 5 pounds (thank God I got the 4.5 pound ThinkPad ;-), but I am allowed to have the kids on my lap if somebody else puts them there. They are very glad to have Daddy home!
I appreciate the restraint of everyone who did not come by to visit, and I think we ’ ll need to keep the “ no visitors ” plan going for at least the next 1-2 weeks. I *am * in good spirits, just very, very tired most of the time.
Thanks again to all those who have sent cards or otherwise expressed concern and/or offered to help; having such a large community of friends has been invaluable in helping me through this ordeal.
10月3日,周二
这是一封我刚从兰迪那收到的邮件。
我很高兴得宣布我从医院回来啦!首先,我要深深地感谢各位的深切关心,特别是那些帮助过我的爱妻神奇女人洁(兼顾三个孩子和住院的丈夫 )的朋友们。
我 的手术进行得不错,但在我完全恢复前还需要6周;这期间我要在家安心静养(我每天只能离开床铺1-2小时,那些楼梯真是把我折磨坏了)。我不可以举起任何 超过5磅的东西(感谢上帝我的笔记本ThinkPad只有4.5磅;-),但我可以让孩子们坐在腿上,如果有人把他们放上来的话。他们非常的欢迎老爸回 家!
我感激各位对于探访想法的压抑,我想我很至少还需要1-2周的时间谢绝探访。我今生不错,但绝大多数时间都很非常的疲惫。
再次感谢各位的问候卡片,表示关心和各种的援助意愿;在度过这样的艰难时期的时候,你们这样一大群朋友真是无价之宝。
October 9th, 2006
Randy continues to rest and recuperate at home. He is able to walk around, go up and down stairs. Most importantly he is resting and healing. This week he has a Dr's appointment so I may know more later in the week.
2006年10月9日
兰迪继续在家休养。他可以随便走走,上下楼梯。更重要的是他在休养生息。这周他有个医生的复诊所以本周内我会有更多了解。
October 10, 2006
Randy is getting stronger each day. He is able to take short walks. Rumor has it he has been seen walking on the sidewalk. He still get tired and need rest but each day he is improving. I also understand he spends some time emailing and even answering questions.
2006年10月10日
兰迪日益康健。他已经可以进行短途散步。有传闻说有人看到他在人行道上。他仍旧感到疲劳并需要休息,但情况每天都在好转。我也了解到他花时间查收邮件,甚至会回答问题。
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October 13, 2006
Randy had his first post-operative appointment with his oncologist on Thursday, October 12th. The recovery from the surgery is going well.
It is advised that no longer then 12 weeks pass after surgery before the chemotherapy begin. Within the next few weeks Randy and Jai will decide their next move to battle the cancer. Randy, of course, went well prepared with a ton of research studies and they discussed various treatment options with the Doctor.
More to come......
2006年10月13日
兰迪在10月12日,周四与他的肿瘤学家进行了术后的第一次复诊。术后恢复得不错。
医生建议在术后的12周内开始化学疗法。兰迪和洁将在几周内决定与癌症进行的下一步抗争计划。兰迪自然是有备而往, 查了很多研究资料, 并与医生商讨了多种的治疗方案。
待续……
October 18, 2006
Yesterday and today the Pausch family moved back to there home from temporary quarters. Many friends volunteered their time to help with the unpacking. As Randy reported today ...
we're not quite "cardboard free," but we're close!
Stay tuned for more updates.
2006年10月18日
昨今两天波许一家从临时的居住地搬回了原来的房子。很多朋友自发的跑到他们家帮忙打包整理。据兰迪本日报道…我们还不能没有纸箱子,可是就快了!
请留意更新。
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October 25th, 2006
Randy has been accepted in to the MD Anderson protocol in Houston.
He will be leaving Monday October 30th for a week of preliminary tests. the The following Monday he will begin chemothepary. He will be there for 6.5 weeks. I am not sure exactly what the schedule will be there.
He and Jai are scrambling to find a workable situation so Jai can be with him and also be there for the children. With the holiday coming up there will be lots of travel back and forth between home and Houston.
Check back for more updates.
2006年10月25日
兰迪已经被休斯敦的德州大学安德生癌症中心接受。
他将于10月30日周一前往该处进行一周的初步测试。在接下来的一个周一他将开始化疗。他将在那边治疗6周半的时间。我不是很确定那边的计划。
他和洁正在思索一个可行的解决方式,使洁在照顾他的之余还可以和孩子们在一起。假期就要到了,恐怕届时会有很多在家和休斯敦间的奔波。