An Unexpected Love of Writing Expands in Two Hemispheres

There is no new medical news to report – which in the case of someone with Stage IV cancer is a good thing!  I’m continuing my weekly Erbitux infusions (with appropriate Mad scientist amendments 😉 ), the side effects are manageable,  my new runathon for the Colon Club is off to a great start and I continue to feel great!  The next CT scan to confirm things are continuing to go well is scheduled for July 27.

Where there is news to report however is a major expansion of my newly realized writing side-career into two new very large markets! An expansion I am excited will hopefully translate into directly helping many fellow patients! 

I had not done any non-technical writing since college – and even in college, I only wrote for assignments, not for fun. I honestly had no idea I would even like writing let alone love doing it.  As recently as January, when I first planned this blog, I only had small plans for it.  I originally intended for it to simply update friends and family with health updates and maybe sprinkle in some oncology science posts (just for fun) because I love talking oncology and explaining it to non-scientists.

Up until an hour before I posted my first post, I intended the blog to be private – i.e. for invited friends & family readers only.  At the last second however, I thought back to all the comfort I had felt reading public cancer blogs when I was first diagnosed – at that time feeling very alone, scared, just plain freaked out.  I was so thankful to see those published windows on life continuing with cancer that I decided I wanted to pay things forward and likewise, make my blog public – just in case someone somewhere in the world Googling “colon cancer blog” might stumble across my writing and get some comfort from it.  Every single day, 7 days a week, I now see Google search hits from across the world (>50 countries) access my blog – so I feel great that goal has been accomplished!

Before I even finished writing my first real post “Taking the Latest Treatment Plunge”, my writing had already expanded into places I never had originally intended – and it has never looked back.  Beyond just a means to give medical updates, the untethered creativity of writing allowed me to try to offer an intimate & personal look into the life of a cancer patient – one who was both incredibly optimistic but also tempered by a realism coming from my unique straddling of the oncology scientist and patient worlds.  Based upon the feedback I have gotten, both in terms of the exponential growth each month in readership as well as the direct positive feedback I have received (especially from fellow cancer patients) this writing has struck a nerve and really helped a lot of people – knowing this is the greatest feeling I could ever have asked for.  Although I wish I never had cancer, knowing that some good is coming out of it gives me almost indescribable joy!

Now for the…………………………..

An Unrealized Love of Writing Expands_Breaking News Pic

New writing project #1 – The Eastern Hemisphere!

One example of this was one of my friends/family update letters having a huge Chinese readership & positive impact which I already discussed here.  If you think obtaining reliable information on recent advances in oncology research and medicines is tough in America, it is orders of magnitude tougher in China!  My friend and colleague Zhizhong (ZZ) Li has the ambitious goal to change that. He has already accomplished much via his virtual publishing and after millions of hits, he is now ready to hit the print world to further expand the reach of his knowledge dissemination to the millions of Chinese patients & caregivers in need.   His new book will cover many different aspects of oncology including the patient perspective.  I’m proud to say that my “Stage IV announcement” letter to friends and family will be included in his book (in both English and Chinese) and I’m even prouder to have been asked to write a preface for the book which will give my “terminally optimistic” viewpoint of the world of oncology – written from the unique perspective of a scientist-patient.

As you know, this is a viewpoint I believe strongly in and I am excited to further bring it to such a large foreign market! The initial book pressing is 10,000 copies – knowing the ambitions and abilities of ZZ, I fully expect that number to rapidly expand upwards.  Since the information he is spreading is so essential, I wish him all the luck in the world to succeed!  One of my blog goals has been to express my optimism and HOPE in recent oncology advances and this book is a tremendous opportunity for me to expand that goal into a new very large population!

An Unexpected Love of Writing Expands_Extra Extra GIF

New writing project #2 – The Western Hemisphere!

As I mentioned, a big blog goal of mine has been to spread optimism & HOPE to patients, caregivers, their family and friends due to the incredible recent pace of research success in oncology.  Related to that, I had originally intended to write the occasional blog post about new and interesting drugs in or approaching clinical trials (in particular for CRC) from a scientific perspective.  Notice the word in that sentence: intended.  What I found in practice is that I was finding so much to write about in terms of my own medical updates and my own personal patient experience, this original goal unfortunately fell by the wayside.  Although I tried to incorporate explaining science in exciting and easily accessible ways into my posts as these related to my own journey, I was not finding the time to write posts exclusively about science as the sole focus.

This was unfortunate because what I was finding as I talked to dozens and dozens of fellow cancer patients 1-on-1 is that there is a real thirst and need out there in the patient world to hear about the latest advances in oncology experimental drugs, in easy to understand layman’s terms that incorporate the true excitement of science!  Not only to give Hope, this information is urgently needed because most Stage IV patients will eventually reach a point where they will be considering clinical trials and not having information on the science of experimental trial drug classes, written in easily understood ways, is a real issue.  Assuming they even know that the government keeps an organized database of clinical trials, here is the “www.clinicaltrials.gov” hit list for “colon cancer” – tonight as I wrote this post, there were 3025 hits. Now imagine being a Stage IV patient, already struggling in multiple ways doing that same search and having no idea how any of those experimental trials were hoped to work or even where to look for that information!  Unfortunately, even many oncologists can’t follow all the early development twists and turns as they very busily juggle treating their many patients and often focus their attention on late stage trials.  I felt horrible that I wasn’t doing enough to address this need but… the scope of trying to accomplish it was just too big for my personal blog which I felt needed to remain grounded and focused on my own personal cancer journey.

The answer to this need and an opportunity for me to try to address it fell into my lap via my incredible Colon Club retreat in Tennessee.

While in Tennessee, I became connected to a different large national CRC advocacy group named “Fight Colorectal Cancer”.  The Colon Club and Fight CRC fill different niches of patient support and advocacy.  Among the many things it does, Fight CRC for example has medical columnists who write about all medical aspects of the disease to directly bring that information to their patient readers.  What Fight CRC was looking to expand into however, was a scientific columnist to write about the science of new experimental treatments earlier in the pipeline than traditionally covered by their medical writers.  This is the area of focus that matched exactly both my own interests as well as what I felt was an area that was very much in need for expanded focus, in particular for the CRC Stage IV community.  Due to my unique role as a Stage IV patient-scientist, I could bring a unique angle to the table – to expand scientific knowledge in easily understood layman’s terms, both patient-to-patient and scientist-to-patient.  I honestly believe that knowledge is power and that this opportunity could help many fellow patients have better informed conversations with their Doctors.

So I am very excited to announce that I am the new monthly science columnist for the Fight Colorectal Cancer website!  My monthly column is called “The Currently Incurable Scientist“.  Here is the link to my first (introductory) column (click on the pic below). The introductory column is a general enough explanation for my Hope & excitement that I think all people dealing with cancer (patient, caregiver, family, friend) could get something out of reading this column – if you agree after reading it,  please share!

An Unrealized Love of Writing Expands_Fight CRC Pic   The Currently Incurable Scientist_2

The Currently Incurable Scientist site actually went live yesterday and as I sat in the infusion center and afterwards, my cell phone never stopped pinging for hours straight as I received incredible numbers of thank you notes from patients – each of which was special to read and reinforced to me the thirst & need out there for this kind of column!

Not only do I believe this column will fill an urgent patient need for Hope and scientific information but it also will solve the problem I was encountering trying to incorporate those kind of posts into my personal blog.  The two writing outlets will be nicely complimentary to each other. I plan to cross-promote new Fight CRC science posts on this site, and reserve scientific posts here to things directly related to my own personal case.  I hope you read & enjoy the Fight CRC posts so that I can finally achieve one of my original goals of this blog!  Oncology research right now really is at its most exciting point ever as hoped for cures are now a primary focus of research. I’m going to keep the same conversational style to explain science on the Fight CRC site but admittedly, since it is a “professional gig” I won’t have as much jokey leeway as I do here…. No dancing nurses… no Ghostbuster or Different Strokes pics… With its added leeway, this site will however remain the same – you’ll have to continue coming here to see my usual mix of JPEG and GIF fun!  As well as some Mad Scientist posts not quite “ready for prime time” on a professional site. 😉

Overall, I’m excited that my cancer path has led me to these new (never expected!) incredible life directions – and most importantly I’m ecstatic of the possible good to fellow patients in real need, that will hopefully come out these writings. Pragmatic information as well as HOPE.  As I meet fellow patients daily and witness their incredible stories on a personal level – helping them, as well as trying to find a cure for myself, are my tied #1 goals of everything I do now.  I don’t know for a fact how & when my cancer journey will end but I know that trying to help fellow patients in need will be a large part of the journey.

Now before I start to write my next “professional column” please allow me to get something out of my system 🙂

DRAFT_Time to Fry Some Bad Guys_Ghostbusters Gif A Very Good Day on the Battle Front_Cartoon_Nurse_dancing Its a Snall World After All_Gary Coleman

Time for a Counter Offensive Running for Health and For a Great Cause_keep-calm-and-put-a-band-aid-on

3 Comments on “An Unexpected Love of Writing Expands in Two Hemispheres

  1. Amazing. Will be hanging on your every word! Your generous spirit is so, so refreshing. Thank you for sharing your many gifts with the world, esp. stage IV people like me, who refuse to be that image of “walking dead (wo)men” that some, unfortunately, can’t see past once metastasis has been confirmed.

    Too often, oncologists are NOT up-to-date on current news in crc research and trials, leaving patients assuming that their only options are the standard-of-care, which often times equates to “chemo for life”, which in many cases (not all! happy to say) leaves the pt debilitated, dependent, and worst–losing hope. Your words are going to change all of that for many, I am confident of that!

    The joy you are experiencing is infectious, and I can’t thank you enough for your work, past and present, and your cooperation in all the “events” that have brought you to this point in your life/career.

    I suspect you would not like the label “hero”, but truly you are (and will be in future, as more benefit from your writing) that to many. Just don’t let it give you a fat head (hahaha, as if that could happen).

    To life! my internet friend. To life…
    Celine

    Like

    • Thank you for the kind comments Celine – too kind… I think we all have different ways in which we can make the world a bit better than how it would have been without us – my various cancer activities are just my attempt at that. You have made your own positive impacts on many patients’ lives on the message boards etc. and through your trial participation- one of these days I pray I can write a column focused on you!
      To life!

      Like

  2. Pingback: The Currently Incurable Scientist: Turning a Cold CRC Tumor Hot | AdventuresInLivingTerminallyOptimistic

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