It’s a Small World After All

Back on June 4th I celebrated my 3rd Cancerversary, based upon when I was first diagnosed Stage IIIC CRC in 2012.  As someone who is recurrent Stage IV, technically I have two Cancerversaries – the second one is in about a week, when I was diagnosed Stage IV last June.  This post is not directly about that though – it is about a truly incredible thing which happened the same week last June, directly because of my Stage IV diagnosis! 

You see – this week is also essentially the first anniversary of me blogging but not in the way you could imagine!

On top of absorbing my Stage IV diagnosis last June, the timing was also a bit unique – I had just sent out a letter 2 weeks prior to all my friends and family celebrating my Cancerversary and continued good health.  Now I had to let everyone know essentially days later that I had “currently incurable” Stage IV cancer.  I know.  Weird.

I would like to say I carefully crafted the letter but in truth, I was in total shock and meticulous writing & editing was, shall we say, a bit challenging.  Instead I just opened up my heart – wrote something down close to stream of conscious – did some quick checks for major grammar or embarrassing mistakes – and hit send.

As a part of the letter, I had decided that unlike during my Stage IIIC days when I would send out regular medical updates by blast email – as a Stage IV, I didn’t want to force my medical updates “blast email style” into everyone’s mailboxes.  Instead I would be open to answer any questions people had but in general I would be keeping things more private {cough – in hindsight – oops, plans change}.

Let’s just say things didn’t turn out how I expected that week – and what did happen was simply incredible

I sent out the letter and I received many notes of support and I entered into my new life as a Stage IV patient.  How did I enter it?  I was feeling great, my spots were tiny and I was told that a surgical cure was impossible – so I could do the math on what the situation was…  I was very blessed that my spots were tiny and were incredibly slow growing leaving me a lot of treatment flexibility. Thus my initial (summer) treatment plan was: I went on a family vacation back East, I ran my first team triathlon, worked full time at my scientific research job like nothing had changed – you know, all the standard things a newly diagnosed inoperable Stage IV patient does {cough} 🙂 My main goal was to protect the kids’ summer vacation (they only have one childhood!) by delaying chemo and then deal with the cancer in September.

But something very special was happening in the background which I had no idea was happening… until months later…

My friend Zhizhong (“ZZ”) Li at work is a great oncology researcher but he is also much more.  If you think obtaining easily understood & timely up to the minute oncology news & information in America is tough – it is much more so in China, in particular outside of the major cities.  As a “side project”, ZZ donates his time to do extensive writing which explains and disseminates oncology news & information back to his (immense) Chinese readership.  There was a huge missing-information niche that needed filling and he has done an absolutely amazing job helping countless people out with his knowledge!

A few months after I wrote that Stage IV announcement letter, ZZ pulled me aside & mentioned that my letter had created an immense groundswell of support in China.  I was like “Whachu talkin’ ‘bout ZZ” since I had no idea he had translated & spread it to Chinese readership!

Its a Snall World After All_Gary Coleman

ZZ then went on to explain that he had taken the Stage IV friends/family announcement letter I had written and translated it into Chinese.  After posting it on a Chinese website, it became a phenomenon being passed on user to user via the extremely popular Chinese text/sharing service “WeChat” which has >500 million active users.

The end result: after his original post:

Readership hit >50,000 users in the first 24 hours and the number of readers of my letter topped 1 Million people within a few months & is currently at a much higher figure.  Many people from the Chinese readership wrote ZZ notes of gratitude that my story had inspired them and given them comfort as they dealt with their own or family member’s Stage IV diagnoses.  I was just dumbstruck – at first surprised but then grateful that a simple letter I meant for family & friends could have achieved so much unintended good in the world.  When I say that amazing (good) things have happened only because I got cancer – this is just one, simply amazing, example.

And thus began my blog (without me knowing it) 1 year ago.

Hearing this story & the good it was doing inspired me to write my own official blog which I finally started (and now love doing) back in January here. My scientist-patient writing continues to expand as I steadily ramp up my patient advocacy efforts – hopefully I’ll be able to share some of those news in a later blog post (if things fall into place 🙂 )

I find it amazing the sheer power of the internet to draw people closer together than ever before.  A simple family/friends letter of mine has been read by and brought comfort to >>1 Million people in China – so the power of the internet’s “coverage depth’ is incredible.  Although this blog does not generate those kind of readership numbers, it is about to hit readership in 50 countries (including some I have never heard of – thank you Wikipedia!) – showing the power of the internet’s “breadth of coverage” as well!

And it all began with a simple letter.  We are all interconnected & it is a very small world after all.

Here is the Chinese website where my letter is archived.  It is neat to read since it shows line by line the original English letter follow by Chinese translation.  I’m not sure for how long that address will be active so I also posted a picture of the website below.

博文

和癌症作斗争(10):我们是不是还不够努力

已有 1251 次阅读 2014-12-10 13:25 |系统分类:科普集锦

菠萝原创,版权所有。转载或任何疑问请联系作者

周一早上打开公司邮箱,突然看到这样一封信,一个极聪明热情,亲自合成出我提到过无数次的肺癌新药 的有机化学家朋友,刚40多岁,两年前发现并治疗过的早期肠癌转移了,现在被诊断为肠癌晚期。真是造化弄人。

转发这封信,因为它让我看到一个难以想象的乐观,积极,专注科学家的光辉。也再次提醒自己为什么选择了癌症生物学这个领域来消耗自己的青春。开发抗癌药物路途是艰难的,但是身边不少被癌症影响的亲人朋友不断鞭策着自己勇敢向前。随时问问自己:我是不是还不够努力?!

与所有癌症生物学科研人员共勉。
Subject: A New Chapter in the Fight & Still Celebrating Life

邮件标题:对抗癌症,庆祝生命的新篇章

 Hi Everyone,

 Well… This wasn’t an email I ever wanted to write – and I certainly did not plan to write to you all so soon after my June 4th celebration email!

大家好,我本来永远也没想过要写这封信的,至少我没想到在刚给大家在6月4号发了庆祝邮件后马上又写这样这封信。(他在刚在6月4号发信告诉大家两年过去了,他的癌症还没有复发,生活很幸福)

 I just received the results from my latest PET-CT scan.  My colon cancer has returned & I have been diagnosed Stage IV, with recurrence in both my lymph nodes as well as in my lungs.  On one hand the diagnosis feels like an absurd surprise to me because I feel 100% healthy but on the hand, since they have been watching those enlarged nodes since last August, I’ve had 10 months of mental preparation for this possibility.

我刚刚拿到我最新的CT扫描结果:我的直肠癌不幸复发了。而且因为癌症已经转移到了我的淋巴和肺部,我这次被诊断为4级晚期直肠癌。一方面,我觉得这个结果无比荒谬,我自己感觉是百分之百的的健康。另一方面,因为医生从去年8月就已经发现我的淋巴结肿大,于是开始了各种检测,所以理论上我有10个月的时间来准备迎接这个坏消息。

The day I got my first PET-scan results last September showing “possible cancer” I immediately jumped out the door and ran my first ever half-marathon.  9 months later, when I got my PET-scan results confirming I am now Stage IV, I immediately ran out the door and ran my second ever half-marathon!  Even after 14 miles, I never lost my breath – not too shabby for a guy with a couple of lung tumors huh? 🙂

当年我去年9月第一次拿到CT扫描结果,显示我“癌症可能复发了”的那天,我忍不住马上冲出门去跑了我人生的第一次半程马拉松。九个月以后,我再次拿到CT扫描结果,证实我确实得了4级晚期癌症后,我又马上冲出门去跑了我人生第二次半程马拉松。即使跑完超过22公里以后,我也完全没有觉得喘不上气,对一个癌症晚期病人来说还不错吧:)

 Final medical plans haven’t been decided yet but it looks likely that I will begin a pretty harsh chemo regimen in July after I get back from a much needed Michigan Family vacation. The great news is that it seems like my tumors are very slow growing, so if they respond to the chemo – between that & my overall great health, my doc thinks I could very well be a long term survivor in terms of prognosis – so no freaking out allowed 🙂 . That would be an incredible blessing – not only a lot more fun time with Amelie & Eleni in their childhood but also a lot more time for science to discover that CRC immunotherapy cure which many very smart scientists are working very hard on that right now!! I am an eternal optimist when it comes to science! I also find Faith in the stage IV CRC patients (some of which I met directly) who have enjoyed miracle very long term complete remissions/cures  – if it can happen to them, I see no reason to assume it can’t happen to me! I remain very optimistic!

我最终的治疗方案还没有确定,但是看起来我这个七月份和人家休假回来就会开始接受相当高剂量的化疗。好消息是我的肿瘤长得非常慢,所以很有可能化疗的效果会很好。这个因素加上我良好的身体状况,医生觉得我很可能会活很长的时间,所以请大家不要太惊慌。如果真是那样,对我来说真是上天的恩赐,让我不仅能和我的女儿Amelie & Eleni分享她们快乐的童年,而且还让我有更多的时间,和很多非常聪明非常努力的科学家一起,来研究更好的能“治愈”直肠癌的免疫类药物。对于科学研究,我是个强烈的乐观主义者。我的乐观也来自于和很多直肠癌晚期病人的交流,看到他们不少人都活了很长时间,甚至有人癌症最后消失不见了!如果这种奇迹能发生在他们身上,那也很有可能发生在我身上!总之我是非常乐观的!

 In addition to standard chemo I am actively researching clinical trials.  Multiple tumor types have had incredible medical advances in the past few years – I believe firmly that they will eventually find tricks that work for colon cancer as well.  For those of you in oncology/medical research – please send me a heads-up anytime you hear anything promising in clinical trials for CRC! I hope I inspire you to focus your research on CRC (hint hint 🙂 )  I’ll also be continuing all my complimentary therapies – I do believe they are a part of why I feel so great & why the tumors are growing so slowing, so slowly it took 10 months to diagnose them even with constant scans.

除去标准的化疗以外,我也在积极寻找新的临床实验药品。过去几年,针对多种癌症都有很多有效的新药出现。我相信我们对直肠癌也会找到更好的药物。如果你是在做抗癌药物或者肿瘤科的临床研究,听到任何新的有希望的治疗直肠癌的临床实验,请务必告诉我。我希望这封信让大家都能专注研究直肠癌(呵呵,这里算暗示吧)。我也会一直继续接受常规治疗,我相信过去的常规治疗是让我身体保持得很好,肿瘤长得很慢的重要原因:我的肿瘤长得慢到要花10个月才能被CT确诊。

 I remain incredibly Faithful and believe one way or another everything will work out OK – my new diagnosis hasn’t shaken that a bit.  My goal is to be here for my kids as long as possible (ideally for decades!), using my cancer to show them to never give up Hope (both spiritually and in terms of medical advances!), to never stop fighting for what’s important and  show them to never be bitter by what life throws your way.  I want them to learn the same lesson my parents pummeled into me as a kid – instead of focusing on disappointing news, instead focus on all the incredibly good things we have been blessed to enjoy.  For example – I already had Stage IV cancer (w/o knowing it) at Amelie & my Father-Daughter School Dance last Fall – the cancer did not take away the fact we had an awesome night together neither one of us will ever forget! With Eleni – we called her the miracle baby because hers was a very rough pregnancy in multiple ways – I had metastatic cancer the day she was born (w/o knowing it) how can I be bitter when I have had the joy of her in my life? Eleni never gave up fighting to stay alive under tough medical odds & neither will I now!

我依然保持着极度坚定的信念:无论发生了什么,一切都会好的! – 我新的诊断并没有动摇我的这个信念。  我的目标是尽量久的陪着我的孩子 (理想情况希望能陪几十年!),我要用我和癌症的故事向他们展示永远不要放弃希望 (无论是精神上的坚定,还是对医学进步的信念),不放弃努力,不因为生命中的困苦而失去乐观精神。我想让她们学到我的父母在我小时候教给我的道理: 不要总是想着那些让人失望的消息,而要把注意力放在那些无比美好的的值得感激的事物里。  举个例子 – 去年我在Amelie的学校和她一起跳“父亲和女儿”的舞蹈时我其实已经得了4级晚期癌症 (我当时并不知道), 癌症本身并没能阻止我们在一起度过了一个美好的难以忘记的夜晚。Eleni是我们的奇迹宝宝,因为她妈妈怀她的时候出了各种状况。她出生的时候我的癌症事实上已经转移了(我当时并不知道)。 Eleni给我的生命带来这样的快乐,我有什么要难过的呢? Eleni奇迹般的活了下来,她从来没有放弃抗争。我今天也不会!

 There is an anecdote of a young daughter asking her Dad what he planned to do after they found out he had Stage IV cancer.  His reply: I plan on reading you your bedtime book tonight and waking up tomorrow morning like I always do! Life in all its fun goes on.

我给大家讲一个小故事:一个小女儿问她的爸爸,当他知道自己得了4级晚期癌症后打算做些什么。 爸爸的回答是:我打算今晚和往常一样,在你睡觉前给你读一个故事,然后明天早上像每天一样醒来! 生活依然要继续,并且要继续充满乐趣。

 I don’t plan on giving any more regular updates by mass email but please do feel free to contact me anytime & ask anything you want – I seriously love hearing from people! Also feel free to forward this email, I know I have accidently missed people that have been very supportive the past 2 years.

我不打算继续用群发邮件的方式给大家更新我的消息。但是任何时候都欢迎大家跟我联系,问我什么都行- 我是真的喜爱收到你们的信! 也欢迎大家转发这封邮件,我知道我可能不小心漏掉了一些在过去两年中非常支持我的朋友。

 I wanted to close again with the picture of me, Amelie & Eleni taken on our June 4th celebration of life.  We’re going to fight to keep on celebrating life together for a long more time. And I am still celebrating being a Cancer Survivor – being one starts the minute you first hear your diagnosis!

我想在最后给大家看看我和我的女儿Amelie & Eleni 在6月4号拍的庆祝生命的照片。我们将相守在一起,在未来很长时间里和病魔斗争,并且一直庆祝我的生命。同时我也将在每一天都庆祝我仍然是癌症幸存者——这从我听到我得了癌症的消息那一刻就开始了。

 Thank you all (friends, family, Church, colleagues) for the incredible support and prayers I & my family have gotten over the past 2 years! I also couldn’t have survived these challenges with a smile on my face without my incredible wife!

谢谢大家(朋友,家人,教堂,同事),感谢你们在过去的两年对我和我的家人无限的支持和祈祷。我想特别感谢我的妻子,没有她,我不可能一直微笑面对生命中的这么多挑战。

 Cheers, Tom

大家加油 Tom!

2014_06-Hubbit Cancer 2nd Anniversary Party

本文引用地址:http://blog.sciencenet.cn/blog-2095011-849899.html  此文来自科学网李治中博客,转载请注明出处。
上一篇:和癌症作斗争(9):中医能治疗癌症么
下一篇:和癌症作斗争(11):神奇的抗氧化保健品

10 Comments on “It’s a Small World After All

    • Hope Alls going well really comforting blog thank you for the insight

      Like

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