乐观地和绝症一起进行人生冒险 (Adventures in Living Terminally Optimistic)

The title to this post is “Adventures in Living Terminally Optimistic” in Chinese. It should also have a subtitle “First, an Introduction… Part 2”. Aka “Oops”.

Seeing my blog title in Chinese still gives me the chills!  I had mentioned previously  that I had written a preface for a new Chinese mass market cancer book written by my colleague Zhizhong Li called “Cancer Insights”.  His book contains a mixture of scientific information on cancer & new treatments written for the non-scientist, as well as personal profiles of cancer patients (sounds like something I would like huh?) 🙂

It was released for sale today in China and I was excited for him to see that it made it to the “Amazon Top 5”, including two #1 ranks for its target categories – and #3 for the category “Science Books > Human story“).  That is a general category of book I have always loved reading because I feel science is too often hid behind jargon!  I not only wrote a preface for the book but I was also included in the “human stories” section – I am very grateful to Zhizhong for that honor. I hope reading some of my story is a successful message of Hope to Chinese cancer patients and their families!

Zhizhong Book_Amazon Sales Ranks_Number 1

Reading through the preface I wrote for his book, I thought that it actually “briefly summarized key points of me & my cancer story” better than any of my previous writings but… ironically it was written in a Chinese! Oops. I’ve certainly shared many pieces of the preface’s info in various writings before – but these were spread across multiple posts and in various places.  They had never been organized into the same sort of cohesive “patient-scientist snapshot in a single post” on this blog. So I wanted to reprint the preface here (with permission).  To spare the majority of you from having to learn to read Chinese (a good goal to have however!) – it is reprinted in both Chinese and English.

Long-time readers will know most of the info but there are a few tidbits in there I had never written before.  More importantly, I have received tremendous levels of new readership from around the world in recent months (welcome & thank you for reading!) and I realized today I have never actually done a true introduction post to this blog (oops)!  The reason behind that? When I started the blog last January – it was initially meant to be a simple replacement for medical update emails to friends/familyThey all knew my story.  Why did I need to rewrite it?

But then something completely unexpected happened.  Within minutes after finishing a somewhat “boilerplate” intro to the “new blog for friends & family” called “First an Introduction…” – which ironically didn’t introduce me at all (oops) – I started to write the first real post “Taking the Latest Treatment Plunge” which took on a much broader creative direction than I had ever originally planned my medical update blog to go in.  After seeing that, I reflected on reasons why I would really want to write a blog while laying alone in the quiet before dawn in front of a Park City, UT fireplace… In the WordPress account setup about 5 AM that first morning – I hesitantly changed the blog’s privacy settings to “public” immediately before hitting the “PUBLISH” button for the first time.

Boy That Escalated Quickly

I am so grateful I took that “plunge” to go “public” that day – BUT since it was very unplanned, when I switched the blog’s “privacy settings” to “public” – I forgot to switch & rewrite my introductory post to a “public setting” too! Oops.

So I hope you enjoy my “’public setting blog introductory post” via China below.  It is a little over 8 months late since the blog’s January start but better late than never!

致敬生命!(To Life!)

汤姆斯 (-Tom)

Preface: Adventures in Living Terminally Optimistic 

乐观地和绝症一起进行人生冒险

“He has colon cancer.  We’ll schedule an emergency surgery immediately” June 4, 2012.  I was still too sedated to be able to open my eyes following a colonoscopy to “rule out cancer” – but I could hear.  An audio-only moment that will be seared in my memory for the rest of my life.

“他得了结直肠癌。我们要马上安排一台急救手术。”2012年6月4日,当我刚做完为“排除患癌可能性”的肠镜检查后,眼睛还因为麻药没法睁开——就清晰地听到了这一事实。从此,那一瞬间便永远留在了我的人生记忆中。

Me have cancer?  At age 40?  I was in good overall health, ate reasonably well, got exercise, was a healthy weight, a non-smoker and ironically a scientist who designed new oncology drugs.  Yes, there was a history of colon cancer in my family – but all of them were diagnosed in their 60’s.  Ironically, to be “extra safe”, I planned to have my first colonoscopy at age 40. At age 40, I was already metastatic.

我居然得癌症了?才40岁就得癌症?我身体健康,从不暴饮暴食,经常锻炼,体重正常,也不抽烟。而且讽刺的是,我还是一个研发抗癌新药的科学家。是的,我知道我有结直肠癌的家族史,我的风险比正常人高一些,但我的亲属们都是60岁之后才得癌症的。更荒谬的是,为了慎重起见,我计划从40岁就开始就做肠镜筛查。谁知人算不如天算,在40岁那年,我不仅得了癌症,还已经转移了。

After a recurrence showing that my cancer had escaped chemo and unable to be cured surgically, thus began my “adventures in living terminally optimistic”.  How did I approach my original diagnosis?  I think like most people – with a sense of overwhelming panic and dread.  Staring death in the face, especially as a young person, causes that to happen.  As I wept in my wife’s arms, being someone who had both been an end of life caregiver to my Mother as she succumbed to pancreatic cancer and an oncology researcher all I could say was “I’m afraid of very few things in life.  Just about the only thing I have ever feared was cancer.”  After that, I could not speak any more.

虽说刚开始治疗效果还不错,但我的肿瘤在两年后复发了,癌细胞变得对化疗不敏感,且手术无法清除。这个时候,我开始了一段“乐观地和绝症一起进行冒险”的人生旅程。 我是如何面对诊断结果的呢?其实我和大多数人一样:极度恐慌,怕得要死,无所适从。当一个年轻人突然直面死亡时,往往都是这样。我对癌症一点也不陌生,因为我长期照顾身患胰腺癌晚期的母亲直到她去世,也因为我是一个肿瘤学家。但这些都没用,我记得当自己躺在妻子怀里哭泣不止的时候,只说了一句话:“我这辈子很少怕什么东西,唯一怕的就是癌症。”在那之后,我泣不成声。

But then something happened.  I looked at my two little girls and realized I had so much to live for.  The oncology scientist in me also began to take control.  When I regained my composure, I decided.  “OK, this is a scientific problem.  I am a scientist & science is always advancing.  I will not assume I can’t beat this.”  At that point I began to approach my cancer as the greatest scientific research project of my life.  That was now over 3 years ago.  I am even more terminally optimistic now than I was upon recurrence!

很多事的发生没什么理由。当我抬头看到了我两个小女儿时,才突然意识到,生命中有太多值得为之活下去的东西。我身体中的那位肿瘤学家终于开始占据上风了。我重新理顺思路,告诉自己:“好,癌症归根结底是一个科学问题。我是一个科学家,科学是在不断进步的,我没有理由否认我们永远无法攻克癌症。”

在那一刻,我开始了这辈子最大的一个科研项目:治疗自己的癌症。现在,三年过去了。癌细胞依然在我体内,但我远比当年更加乐观!

I have been involved with oncology research for more than 20 years.  I can honestly say there has never been as much true excitement amongst oncology scientists ever about the incredible pace of new & exciting cancer drug breakthroughs as right now.  These breakthroughs range from improved targeted therapies, to novel treatment methods such as viral and cellular therapies, to the truly groundbreaking & paradigm shifting checkpoint inhibitor immunotherapies!  This is not hype.  Now that immunotherapies have recently been showing significant clinical activity in multiple advanced cancers, the entire field of oncology drug discovery has been transformed.  The required technology & scientific pieces are starting to come together with the new goal to cure significant numbers of children and adults with advanced stage cancer, instead of the traditional more limited goal of relatively modest increases of lifespan.

我做癌症研究已经超过20年了。我可以非常诚恳的说,迄今为止,肿瘤学家从没有像现在这样对攻克癌症雄心勃勃,因为新的革命性药物层出不穷。这些重大突破包括,更好的靶向药物,最新的病毒和细胞疗法,以及已经彻底改变很多癌症病人命运的免疫治疗(免疫检验点抑制剂)。这绝不是炒作!免疫疗法已经在多种癌症治疗中显示了非常好的疗效,肿瘤药的研发模式也被彻底改变了。正是由于这些科学和技术的进步,现在我们治疗癌症的目标,已经从有限地延长患者生存时间,转变为治愈绝大部分儿童和成人癌症患者。

This is why I always describe myself as “currently incurable” because from my inside view, I see so many promising new cancer drugs & strategies, I can’t feel anything but optimistic that major cancer treatment breakthroughs are fast approaching patients! I am a firm believer that once you have a critical mass of research funding, brilliant scientists and a strong drive to succeed (all scientists know someone who has been stricken by cancer), the human race can solve any problem – including cancer.  I believe we are currently living in that moment for cancer drug discovery. Will new advances be made fast enough to save my life?  I firmly believe that most cases of advanced colon cancer will be cured within my wife’s lifetime – I hope and believe there is a chance that it will happen in my lifetime!  Note the word HOPE in that sentence. From my insider’s view as both an oncology research scientist and a “currently incurable” patient, I have a lot of HOPE and so should you!

因此,我一直称自己为“暂时无法治愈”的癌症病人。因为,我看到了这么多令人鼓舞的新药和癌症研究进展,我坚信癌症治疗将迎来更大的革命性突破,更多病人会因此受益!每位科学家的身边也都有亲人或朋友是癌症患者。我坚信不疑:这些才华横溢和动力十足的科学家,再加上充足的研究经费,一定能解决任何科学问题,包括癌症。我还相信,我们正处在癌症药物研发的黄金时代。

科学在发展,但它来得及拯救我的生命么?我不知道。但我确信我太太的有生之年一定能看到大部分直肠癌患者被治愈的那一天,当然,我也希望能等到那一天。

我喜欢用“希望”这个词,因为作为一个研究癌症的科学家,和一个“暂时无法治愈”的癌症病人,我满怀“希望”。你,也应该和我一样!

Cancer Insights by Zhizhong Li is the perfect book for exactly this moment in history.  It describes cancer from a range of angles from the scientific to the personal, from the historical to the cutting-edge.  It also is infused by that feeling of excitement and HOPE in recent scientific progress that I share – not only as a scientist but as a Stage IV cancer patient.  I believe that Cancer Insights will bring you the necessary information to empower you and I also believe that it will infuse you with Hope.

李治中博士的《癌症.真相》这本书,来得正是时候!它邀请大家一起来见证这个历史性的时刻。这本书从多个角度讲述癌症,从科学原理到个人体验,从历史经验到最新前沿。重要的是,这本书的字里行间充满了目前抗癌治疗领域进展给作者带来的“兴奋”和“希望”,这和我,一位科学家同时也是一位晚期癌症病人的感受完全一样。我相信《癌症.真相》能够给各位病人和家属带来力量,同时也会让大家对战胜病魔燃起希望!

To Life!  -Dr. Tom Marsilje

致敬生命!

汤姆斯.马斯尔泽博士

8 Comments on “乐观地和绝症一起进行人生冒险 (Adventures in Living Terminally Optimistic)

  1. “I will not assume I can’t beat this.” Words to (literally!!!) live by.
    Congratulations to you and to Zhizhong Li on this marvelous achievement.
    …now…to find myself a translator 😉

    Liked by 1 person

    • 🙂 akasleen – you are working on bigger impacts on CRC than a Chinese translation – your opportunity to go international too is hopefully fast approaching! 🙂

      Like

      • Helps me so much right now. I am getting there. Attitude adjustment. Both times of dx were completely surprises. Total life adjustments.

        Like

  2. Wow, Tom you are always inspiring! I am humbled by your attitude and reading your words reminded me that just because it is stage four doesn’t mean it is over. Congratulations!!!!

    Liked by 1 person

  3. Pingback: World in My Eyes (Favorite Posts of 2015) | AdventuresInLivingTerminallyOptimistic

  4. Your blog is really inspiring and I love the url name.

    I’ve been recently introduced to CRC. A close friend was taken to the emergency room because of pain and weakness and a sudden swollen stomach. It was all bad news after bad news. Ascites due to probably liver damage? No, more tests, CT, MRI and more CT and more MRIs. Xrays for the lungs and an endoscopy, all before a colonoscopy that revealed colon cancer. Advanced. Next is an appointment with the oncologist who is excited about starting treatment. Before the appointment day, there is a call from the oncology surgeon for a sooner appointment. The doctor sent him straight to the ER again and said they should have not released him. The lungs now had liquid. Little by little more bad news were coming up. A lung collapsed. Surgery revealed tumours had spread to the abdomen cavity. Colon tumour too large to remove. The surgeon couldn’t even put a pouch in. Cancer is too advanced for chemo. Patient too weak. Terminal colon cancer and less than 3 months to live was the final diagnosed. And now it’s just wait and see.

    All this happened over the last month. I still feel angry and cannot believe there is nothing that can be done or any clinical trials recommended. My friend is 51 and was in good health and shape until just a couple of months ago when he started to lose weight. And even from the first visit to the ER to now he seems to have lost 1/2 his weight, all his energy and has aged some 20 years. The cancer is just eating him fast, very fast.

    Here in Canada a colonoscopy is recommended after 50, he said he was going to get it done but I don’t think this would have made much of a difference. According to the doctor this cancer was probably growing for several years.

    Anyway, I don’t even know why I chose this blog to post, Maybe I’m hoping that as a patient and a scientist you can tell me “wait that doesn’t sound like terminal cancer to me”. But I guess it does. everything is just failing him. And like you, no symptoms until it was so late, too late for him.

    Thank you for all you share and best of luck staying alive for your family.

    Like

    • I wrote the above post during the day when I was at work. I went to see him that evening and he was quiet, didn’t want to talk he said he felt too weak to talk.
      Sat Mar 25 I went to see him in the evening, he looked bad, very weak, extremely thin. My sister had taken him for a ride on the wheel chair earlier that day. She said he didn’t get out of bed until she got there. I think the highlight of his day was a visit from her grandaughter that evening, he was very happy to see her and her mom.
      I stayed until 11pm and left after he got his pain medication and helped in bed. He was falling asleep. He said thank you three times. After midnight I got a called that he passed away in his sleep. RIP

      Like

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