World in My Eyes (Favorite Posts of 2015)

In many ways 2015 was the most incredible year of my life.

Over 3 years into a currently incurable Stage IV colon cancer diagnosis, that phrase says a lot.  Of course, the most incredible moments in my life were my kids’ births and my marriage day.  But in terms of almost continuous meaningful things happening….. as a year, 2015 took the cake. I had ZERO guess that any of this was coming last New Year’s Eve… for most of the year it felt like a significant experience happened each and every day.  Although I obviously wish I didn’t have cancer, I’ll take that kind of life!

Depeche Mode - World in My Eyes

World in My Eyes – Looking Back on 2015

The title to today’s post comes from one of my favorite songs from one of my favorite bands, Depeche Mode.  It isn’t something I have talked about in this blog before but music has always been a huge part of my life – and has continued to serve as a continuous soundtrack through the twists & turns of my journey through cancer.  My music collecting came up in my recent interview “A-Sides and B-Sides” and it reminded me that I had inexplicably never mentioned it on this blog.  Even though it is somewhat of a moot point in today’s streaming world, I became a serious music collector over the years, starting in 5th grade with the purchase of an album (technically cassette) by David Bowie.  I’m glad that I started with someone of that music caliber at such a young age – but before I start pretentiously claiming too much young age musical superiority,  that is tempered a bit by the next album bought – by the musical geniuses {cough} known as Naked Eyes. I’ll let history be the judge of album #3 by Adam Ant 🙂

Twisting its usual meaning, I think the phrase “World in My Eyes” sums up succinctly how I view this blog and all of its various patient-scientist-advocate facets.  Taken together, my writing is the Cancer World as seen in my eyes, from all three viewpoints.  The past year has shown me MANY incredibly inspirational and heartwarming things but life has its good & bad, its light & dark.  Although my life this year has been amazing, becoming fully immersed in the Stage IV patient community, I have also had a first-hand seat to a simply unacceptable amount of often young age suffering, heartache and loss.  This changes a person.  I simply can’t sit back & be complacent when surrounded by so many people struggling for their lives, through no fault of their own.  This is interwoven into the person I have become in 2015. I have witnessed the loss of numerous Cancer Brothers and Sisters this year, the closest one to me being Chris, who I wrote about in the post “Dor-Tor Etek Nash-Gad Vokaya t’Chris”.  People like Chris are why CRC needs new treatments discovered as soon as possible. Depeche Mode was Chris’s favorite band.

2015-05_Team Triathlon_6_Cropped 2015-03-22_What the Heck is anti-EGFR Therapy_Mad Scientist Happy June 4th! (v.3.0)_Colondar Family

 

2015 was an incredible year in all 3 facets of my Cancer Life

Patient: After chemo, an anti-EGFR targeted therapy, two lung RFA surgeries (1 collapsed lung) and then more chemo – another year later (now 3 ½ years post-diagnosis) I’m doing well, still running that marathon called life! I’ve had some fatigue issues with FOLFIRI (one of the common chemo side effects due to e.g. blood cell tox) preventing running in recent weeks but with my 2 week chemo break for Christmas, I’m planning on running at least a “FOLFIRI 5k” over the Holidays 🙂

Scientist: 2015 has been an incredible year of progress in terms of new cancer therapies, in particular immunotherapies.  These advances include the breakthrough discovery of significant anti-PD-1 immunotherapy activity in the MSI-high subset of CRC! The hunt is now on for a successful strategy for my (and most peoples’) non-MSI-high CRC! Of course my own cancer actively remains the single greatest research project of my life.  Stay tuned on that one.

Advocate: From its simple start, this blog grew by leaps and bounds – readership has hit 108 countries, 3 languages, and it is currently getting almost 50,000 hits per month.  As I’ve written on throughout the year, I have had incredible experiences in 2015 being a part of/working with: The Colon Club/Colondar 2.0Fight Colorectal Cancer (including my “Currently Incurable Scientist” science column & recently their immunotherapy expert roundtable); The WunderGlo Foundation as both a Wunder’s Warrior  & blog partner and most recently starting to serve as a “CRC ImmunoAdvocate” for the Cancer Research Institute.  A friend of mine jokes that he needs a flowchart in his hand to keep track of everything in that sea of blue hyperlinks. The breadth of activity underscores however the breadth of the need.  Those are all my formal activities but even more meaningful to me is my daily direct patient advocacy through groups such as Colorectal Cancer Survivors Unlimited, ColonTown (helping to form & run its Blue Hope Clinic), Colon Talk & Blue Hope Nation to name just four of the largest online communities I belong to. The people I have met in those organizations & online communities are truly incredible! I’ve made some tremendous friends among them this year.  In addition to friendship, as both a scientist and advocate, I feel like I have made a direct positive impact on a number of CRC lives in 2015.

As both a scientist and advocate, I can think of nothing more fulfilling than making that kind of direct positive impact – a dream come true.

Father Time - End of the Year

Reading Back on 2015

Just as the close of the year caused me to mentally reflect on the most important (some absolutely life changing) key moments of the past year, so too the year’s end caused me to reflect on my 2015 blog posts – some of which I had not actually re-read since their original posting.  I’ve never written a diary before (one aspect of this blog) – it was very interesting to relive moments from the past year from the viewpoint of its end in December.

Overall, aside from the occasional typo that slipped through and sat there publicly for months (grrrr, thankfully blogs are easily editable!) I was happy with my writing project as I could see it steadily track into ever expanding new directions over the course of the year.  There were some unexpected twists and turns to my life this year but c’est la vie.  As I reflect here, I think I am sitting at an incredibly positive moment in my cancer life with many exciting things (across all areas patient-scientist-advocate) currently happening – so I focus on that.

Needles in an Intimidating Haystack

A relatively small cadre of family/friend/co-worker readers have been with the blog from the start but I’ve had many new readers in recent monthsLooking at my “Most Recent Posts” list on the right side/bottom of the page – there are about 50 of them.  I think that must be intimidating to new readers – if a current post brought them to the page and they are curious to read more, where to start???

As a writer who consciously has “a cancer story I want to tell”, I didn’t like the fact that my new readers who wanted to read more posts didn’t have a clear idea of which posts to focus on first. As a writer who has a strong emotional connection to my writing, there are also some posts which are especially close to my heart – and my heart wants to share those posts with as many people as possible and not have them get lost as needles in the proverbial haystack!

So taking this opportunity to close out & sum up both a simply incredible year (the most exciting & fulfilling year of my life!) as well as my first year of blogging (my first ever stab at creative writing, with my first blog post “Taking the Latest Treatment Plunge” published on January 13, 2015), listed below are my personal Top-20 (10 & 1) favorite posts from 2015, listed in chronological order. Since my posts refer to each other and since this blog chronicles my current journey through cancer – I think reading posts in chronological order is ideally the way to go. Yes, some of the info is dated – but all of it was important in shaping the patient-scientist-advocate you see and hear today.

I hope even long time readers are enticed to re-read some of these key posts, they really do offer a succinct snapshot of the incredible 2015 I lived and experienced. Sadly, some posts I really like had to be left out (e.g. “A Tale of Two Scans” & “List on Request Only” I’m looking at you!) unless I wanted to make this a “Top 50 posts of 2015” list 🙂 – but all posts will continue to be archived on the site for anyone wanting to binge read! 🙂

To new readers: in a nutshell these posts are the story of a formerly introverted scientist, who unexpectedly became an extroverted patient-scientist-advocate by nervously sticking his toe into the blogging waters for the first time in January, 2015. 

And from my viewpoint, something very unexpected and positive happened.

I’m glad I not only stuck my toe in but eventually made the leap of Faith to dive into the deep end.

Baby New Year and Rudolph

Time to take a blogging break until 2016.  We’ll be celebrating a Family Christmas at home and then a downhill ski trip afterwards (mirror bookending the 2015 start of this blog), celebrating yet another life milestone, Eleni’s 5th birthday!

As the final blog post of 2015: Merry Christmas, Happy Holidays, Happy New Year (I’m personally expecting 2016 to be even more exciting & fulfilling than 2015!) and THANK YOU for reading and joining me in seeing the World In My Eyes. Across 108 countries and counting (added Gibraltar today!), we are all interconnected together on this long strange trip called LIFE.

To Life!

-Tom

 

2015 Recap: My Top 20 (10 & 1) Favorite/Key Blog posts in Chronological Order

(Bold = My Top 10; *** = My first & still my favorite post. My baby 🙂

  1. TAKING THE LATEST TREATMENT PLUNGE***  Where it all started. “My goal is life; I’m trying to figure out what it takes to achieve this; and this week we planned the (latest) necessary treatment plunge — with no fear.”
  2. THERE IS ALWAYS SUN BEHIND THE CLOUDS  “They say cancer battle-hardens you to handle almost anything that life can throw your way. You know what, they’re right.”
  3. SCHÖPFERISCHE ZERSTÖRUNG  The repercussions of my Stage 1 (Cured) Melanoma diagnosis hit. “The ironies keep stacking up… but my Faith and optimism continues. … Like houses, sometimes even the best-laid plans end up destroyed in order to build the path to better ones. Schöpferische Zerstörung.”
  4. A SCIENTIFIC GUARDIAN ANGEL APPEARS  “For a scientist experiencing an extreme low last week with being excluded from many clinical trials, this was exactly the kind of Guardian Angel life vest I needed to be thrown, exactly when I needed it most.”
  5. WHAT THE HECK IS ANTI-EGFR THERAPY? (WITH AN AUDIBLE PLAY CALL AT THE END)  “But the moral of the story is to illustrate the wild and unique world of being a Stage IV cancer patient. … Oh yeah, the second moral of the story, hell hath no fury like an oncology scientist excluded from clinical trials”
  6. THE HUMAN SIDE OF ANTI-EGFR THERAPY  “The magic of life is that if there is love, it will find a way around whatever little barriers that may arise in life. … It may not be a “normal life” but we’re living the one we’ve been given with as much love & childhood fun as possible – treatments and cancer can’t take that away if we refuse to let them.”
  7. A VERY GOOD DAY ON THE BATTLE FRONT! (CT SCAN RESULTS ET AL)  “To me it feels almost like pre-scan, my cancer status is in a kind of “quantum superposition” which doesn’t collapse down into a definitive reality until its CT-scan-observation, like a neoplastic version of Schrödinger’s cat. … a part of life is celebrating battle wins despite the wars, so celebrate I will.”
  8. TIME FOR A COUNTER OFFENSIVE  “Opening up a new offensive battle line, taking the battle directly to the cancer and hitting it mercilessly with brute force – like it is trying to do to me – feels good. Really good.”
  9. HAPPY JUNE 4TH! (V. 3.0)  “Some people look at their diagnosis anniversary with sadness, I prefer to make it a Holiday celebrating Life. We’re hoping it is an annual Holiday which will continue on for many more years!”
  10. IT’S A SMALL WORLD AFTER ALL  My Stage IV diagnosis letter to Family & Friends – via China “I was like “Whachu talkin’ ‘bout ZZ” since I had no idea he had translated & spread it to Chinese readership! … And it all began with a simple letter. We are all interconnected & it is a very small world after all.”
  11. ELEVEN NEW SISTERS AND BROTHERS (AND MANY MORE COUSINS)  “I have quite simply never met so many people in one place who have not only endured incredible levels of hardship but have THRIVED – filled with hope, humor, heart, zest for life and strength beyond anything I can convey in words.”
  12. TRYING TO KEEP LUNG TUMORS AT BAY, THE MAD SCIENTIST WAY  “…as a scientist, I don’t want to have any thoughts in the back of my mind “I had that cool idea to try — that I think my doc might have agreed to — but I didn’t have the guts to say it to him…”.  I think that would be the worst feeling in the entire world for a scientist in that situation. A feeling I have every intention of never feeling.”
  13. DOR-TOR ETEK NASH-GAD VOKAYA T’CHRIS  “I lost a Brother. Chris Shomenta was quite simply a fine man. I didn’t get to know him directly as much as I truly wish I could have – but what I did get to know was exceptional. … Dor-tor etek nash-gad vokaya t’Chris. Nam-tor ek’etek nelauk k’tevakh hi vesht tvidonik k’ha’kiv t’osa-veh.”
  14. LUNG RFA ROUND 2: THE POWER OF POSITIVE ROLE MODELS  “Hope is one of the most powerful human emotions and lately I have been filled with more & more of it. If my new found Hope, and its consequences, buys me more time for the immunotherapy cavalry to arrive, it could perhaps save my life.  The Power of Positive Role Models indeed.”
  15. HAPPY 71ST BIRTHDAY MOM – INSPIRATIONAL PATIENT ROLE MODEL AND IMMUNOTHERAPY PIONEER  “Some posts are closer to my heart than others. This one is very close – it shows what made me the patient-scientist-advocate I am today… and it comes down to Mom. … Most importantly, as a fellow-patient, she inspires me daily in terms of how I approach my own disease with Faith, humor, vitality, exuberance, and the guts to follow an unbeaten path while reaching for a cure.  She is a tremendous role model that I strive to live up to everyday.”
  16. 乐观地和绝症一起进行人生冒险 (ADVENTURES IN LIVING TERMINALLY OPTIMISTIC)  An introduction to me & my original diagnosis – via China. “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”.”
  17. 114 MILES, $4766 AND THE PATH TO CANCER GOALS  “If that isn’t a great analogy to being a Stage IV cancer patient, I don’t know what is. I plan to accomplish that goal (LIFE) too – whatever path I am required to take to get there.”
  18. THE FACES OF SUCCESSFUL COLORECTAL CANCER IMMUNOTHERAPIES: VOL. 1  My single most important post and the most shared. “I once again urge all CRC patients to discuss MSI testing with their MD. What we are seeing right now, illustrated by Leta and Stephen, is just the tip of the iceberg.  I honestly believe the future of cancer immunotherapy will be breathtaking to behold. Fasten your seat belts…”
  19. IT’S A MARATHON NOT A SPRINT  “My goal is simple: LIFE. As of right now, balancing everything, I believe the above strategy is the best way for me to achieve that goal. Time to shrink some tumors and keep running this marathon called Life…”
  20. TIME TO TREAD SOME WATER  My 2nd most shared post. “Why Immunotherapies Changed Everything … Treading Some Water … The Big Picture … We didn’t chose this battle, it surprise attacked us. It’s time to tread some water while we wait for the coming cavalry. To do so is a Life based upon Hope; without Hope, none of us – cancer survivor or otherwise – would truly be Alive.”

10 Comments on “World in My Eyes (Favorite Posts of 2015)

  1. What a year for you! I am so thankful that our cyber-paths crossed, and look forward to years and years of future posts from you. Blessed Holidays to you and your family, Tom!

    Liked by 1 person

    • I had a pretty amazing year but I would argue that yours was even more incredible Akasleen! 🙂 My goal for 2016 is to catch up to you! 😉 Wishing you and your entire family a very Merry Christmas and New Year!!

      Liked by 1 person

  2. This post is one of your best. You have no idea how much I needed this today.
    Hope is our best tool and we just need to pick it up and choose to use it in our daily lives.
    Cancer breaks our bodies and our hearts. We suffer and our friends and families suffer with us. But, HOPE is what keeps us centered on living this life with cancer.
    Merry Christmas and Happy New Year Tom and family and to all our extended friends and family in our cancer support connections.

    Liked by 1 person

    • Thank you so much for that comment Chrissy – hearing that my post touched you & that it was perfectly timed totally made my day… I gave an interview yesterday and my concluding remarks were all about HOPE. Whether it is HOPE from a Spiritual direction, HOPE from a direction of seeing friends on message boards vastly outlive “stats”; HOPE from scientific progress (or in my case all 3!) – whatever the direction, HOPE is key. Merry Christmas & Happy New Year to you – I was very glad to get to know you this year!

      Like

  3. Thank you for such a wonderful post. This is a great read for all. I cannot believe how much you have taught, learned, inspired…. in 2015. Warm wishes during this holiday season and looking forward to reading about all of the changes you will bring to the world in 2016! Shikin Haramitsu Daikomyo!

    Liked by 1 person

    • Thanks for the nice comment Emurph – Happy Holidays and Happy New Year to you & your entire family as well. I hope your Holiday break is restful, regenerative and enjoyable – recharging you to help you bring your own positive changes to the world in 2016!

      Like

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