THE CURRENTLY INCURABLE SCIENTIST
This page is an edited excerpt of my longer post“AN UNEXPECTED LOVE OF WRITING EXPANDS IN TWO HEMISPHERES” https://adventuresinlivingterminallyoptimistic.com/2015/07/15/an-unexpected-love-of-writing-expands-in-two-hemispheres/
Click on the picture above and here for a list of topics and posts.
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 hundreds 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. 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!
When The Currently Incurable Scientist site went live 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. 😉
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.