AdventuresInLivingTerminallyOptimistic

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Cover photo by Ariana Drehsler for STAT.  Source: STAT News – here. As you know I work with MANY different CRC organizations – The WunderGlo Foundation, Fight Colorectal Cancer, COLONTOWN, The Colon Club, the Colon Cancer Alliance etc – all are doing many great advocacy (and in the case of WunderGlo a purely CURE RESEARCH focus) projects in their own way. Because I work for so many – fundraising would get very… Read More

What makes a hero? There is some debate in the cancer community… is it right to refer to cancer patients/survivors as heroes? A burning building/emergency responder argument is sometimes used.  If a person wakes up in a burning house and struggles their hardest to try to find a way out safely – that person may be a survivor but he or she is not necessarily a hero.  They found themselves in danger… Read More

Wow. What an incredible week it has been… I am tearing up now just thinking about it as I fly home from New York City (NYC) to my home and my family in San Diego. A lot of people have been wondering how I have been doing since the last medical update (In Case of Emergency Break Glass).  It is hard to believe that it has been almost a month since that… Read More

March 1st is the beginning of Colorectal Cancer Awareness month. I chose to commemorate it in this way – in the hopes that these pictures will bring awareness of the EXPLOSION in early-onset CRC cases. If you have GI symptoms with more common causes ruled out by your PCP – NO MATTER WHAT YOUR AGE – demand a colonoscopy! If I had been faster, I might not be Stage IV right now…. Read More

I feel so extraordinary, Something’s got a hold on me I get this feeling I’m in motion, A sudden sense of liberty… I used to think that the day would never come, I’d see delight in the shade of the morning sun “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.” That… Read More

SCHEDULED FOR FRIDAY (12/23) – NBC NATIONAL NIGHTLY NEWS with Lester Holt!  NBC Nightly News recently interviewed both I and a patient/caregiver couple helped by the COLONTOWN CLINIC, a project supported by the Colon Cancer Alliance.  The interview and story will air this ????? night. As many of you know, I am proud to work on numerous patient Clinical Trial advocacy efforts with a number of advocacy organizations to try to empower &… Read More

Hope – it is such a simple, yet complex word. A short word that is easy to explain on the base-level but it can be incredibly complex to comprehend all the facets in which it can impact the human psyche. Hope can be rational or irrational – the human brain has trouble distinguishing.  Are we paralyzed in fear that we will not be alive for the next major Holiday?  No – we… Read More

I had my post-summer-chemo-break CT-scan on Wednesday.  Regrets & worry started to try to enter my consciousness.  They were unwelcome invaders and to be honest, rarely seen or felt in my psyche now days.  But here they were – as I laid on the CT-scan table getting scanned…. Laying there completely alone, unlike the constant buzz of comradery that had surrounded me throughout my summer. A scan to quantify how much my… Read More

Some people have the mindset that once you hit age 40, you are pretty set in your ways.  They think: You know yourself, you know your likes and you know your dislikes.  You have after all, had a couple of decades to figure these things out! Up until recent years, I think I also had that view.  Sure there were new experiences I had never done before that would enter my life… Read More

Last year I was lucky enough to be chosen as a Featured Survivor in the annual Colondar 2.0 magazine  that The Colon Club produces each year. As a part of being chosen, you are invited to attend a “Colon Camp” retreat in rural Tennessee.  Last year I wrote in the post “ELEVEN NEW SISTERS AND BROTHERS (AND MANY MORE COUSINS)”, that going to Colon Camp last June was an amazing life-changing experience for me. … Read More

When I first started this blog, I made a very conscious decision: I wanted to “be that Google Hit” found when someone first diagnosed with CRC is scrambling to search for information in the middle of the panic of recent diagnosis.  Patients panicking while looking at survival stats, in need of HOPE.  Following the extremely good role models of the two blogs that performed that role for me during my own diagnosis… Read More

A great aspect of my current life is that I get to meet some incredible people doing incredible things.  Doing things that they never would have done without cancer entering their life – done both in spite of cancer and because of it. Many of these people are incredible in quiet and unassuming ways.  Others make big impacts in more public sorts of way.  Lee Silverstein is in the latter group. I… Read More

My alarm went off at 3:30 this morning.  I was not expecting what ended up being my first thoughts.  They weren’t of me running the run leg of this morning’s Spring Sprint Team Triathlon per se.  Instead, intermingled with run thoughts were also thoughts of fellow colorectal cancer (CRC) survivors I know who currently aren’t doing too well. Survivors I know that aren’t physically able to run right now. Those were the… Read More

Surfing the AACR Waves of Science What a day.  I just woke up from a drug-induced nap that wasn’t particularly long but it was deep.  For the second FOLFIRI chemo infusion in a row, I fell into such a deep sleep when I got home, that when I woke up it felt like I had slept for many hours.  Looking over at the clock, it said 4:37.  That felt about right –… Read More

It’s hard to believe that it has already been almost 12 months since I last ran a UCSD-Moores Cancer Center Team Triathlon, which I wrote about last year in my post THE ULTIMATE TEAM SPORT: “A big part of being a cancer patient is trying your hardest to not give up in the face of adversity.  In that way it is very similar to endurance sports.  This is what makes the Moores… Read More

You know those moments in life when something so unexpected, so exhilarating & so meaningful (all wrapped up in one) happens – that each time you think of it you get the chills all over again? I had one of those moments a few days ago in the basement of the Congressional Rayburn House Office Building.  It was such a special meeting, even Katie Couric, a big CRC and cancer advocate, tweeted about… Read More

In conjunction with the start of Colorectal Cancer (CRC) awareness month, I’m excited to announce that the 2016 Colondar 2.0 annual resource magazine was released today! I LOVE the page from my section pictured above (all Colondar 2.0 photos taken by the incredible Mark McCarty & courtesy of The Colon Club!).  Note the caption they chose to use, I think they captured my mindset and philosophy perfectly. “Incurable… For now… The lung spots… Read More

My friend Lindsey Motley died of colorectal cancer (CRC) today.  She was 29 years old. She was very special in many ways to an incredibly large number of people – including to me. Lindsey was many things…  Too many things to list to do justice.  I think most of all she was a loving wife and mother to a young daughter. At the end of the day what matters more than that?… Read More

La version en Español es accesible pasando el texto original en Inglés The title of this post is “The Faces of Successful Colorectal Cancer Immunotherpies: Vol. 1” in Spanish.  To explain why… Uniting the Western Hemisphere A major goal of mine is to bring this blog’s message of scientific information, positive Stage IV life outlook and in both cases HOPE to the different corners of the world.  Continuing this goal, following successful… Read More

“Each patient’s cancer is unique and personalized – why shouldn’t their treatment be too?” My latest The Currently Incurable Scientist column for Fight Colorectal Cancer has published and it ended with the above quote.  The column discusses an area of cutting edge oncology research that I find absolutely fascinating: a type of experimental immunotherapy called a “personalized cancer vaccine”.  I already mentioned personalized immunotherapies briefly in my post “My New Year’s Vision of… Read More

  You have probably thought to yourself “Wow, I’m having a bad day”  Or maybe “Whew, that was close”  Or perhaps even “I’m not sure if I’m going to make it…” I ask you to imagine being the cosmonaut Boris Volynov.  His story as cosmonaut on the Soyuz 5 mission in 1969 isn’t well known in America but it is simply incredible. I’m not an astronautical engineer (or even play one on… Read More

Everyone who reads this blog knows how much running is tied into my cancer story.  From its very beginnings as initially a fast-paced walk during my Stage 3 NED (No Evidence of Disease) days, to my first ever half-marathon length run the same day a PET-CT scan showed probable recurrence/Stage IV, to my post-Stage IV diagnosis team triathlons with the UCSD-Moores Cancer Center.  Just looking through the post titles on the right/bottom… Read More

I know I had promised that my previous post “WORLD IN MY EYES (FAVORITE POSTS OF 2015)” would be the last of 2015 but… it is hard to keep a writer away from his keyboard when he sees a need… I noticed one of those “temporary public service announcement posts” on Facebook this morning – the ones that float around and ask you to share on your wall for an hour.  This… Read More

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… Read More

As my most recent Currently Incurable Scientist column began: On December 2, 2015 a remarkable meeting took place. Jointly organized by Fight Colorectal Cancer (Fight CRC) and the leading immuno-oncology organization the Cancer Research Institute (CRI), an unprecedented meeting gathered many of the world’s leading experts on both CRC and immuno-oncology. Top scientists devoted to CRC research sat around the same table together for the first time to discuss what is needed… Read More

I thought this would be a great way to conclude a 3 post cycle centered around Thanks and Giving before we head into the home stretch of the end of 2015 and the end of my first year of blogging… And since I have written a few posts abnormally close together, I promise only a few hundred words this time, just slightly longer than an @CurrentIncurSci tweet 🙂 (although I admit I am a more… Read More

1 in 20 Americans will hear the words “you have colorectal cancer (CRC)” this year. In America alone, it will cause 50,000 deaths in 2015. Currently there is no cure for inoperable Stage IV CRC although CRC is preventable/highly curable with proper medical surveillance (early colonoscopies if you have a Family History of CRC or if you are in an age based risk group). CRC can also at times be highly curable… Read More

As I announced in my most recent medical update post “It’s a Marathon Not a Sprint”, this week I started the chemotherapy cocktail FOLFIRI  + the angiogenesis inhibitor Avastin (bevacizumab). I wanted to update you on how the return to chemo went. I won’t sugarcoat this decision nor the experience. I believe my writing, fellow survivors & you all deserve brutal honesty – but it is, as always, Hope filled.  Hope is… Read More

An Unexpected Conversation Over Breakfast August 26, 2015.  It was early in the morning California time – late afternoon in Russia.  I was going through my overnight messages in the large colorectal cancer (CRC) online message board “Colon Talk“.  This message board is the largest of its kind for CRC and its participants truly are international.  As is often the case, I had a private message waiting for me from a fellow… Read More

I wanted to expand the normal scope of my personal blog in today’s post. Not just for the sake of expansion but importantly because I believe strongly in today’s topic!  After a bit of introductory science, I will be profiling two fellow CRC patients currently in immunotherapy clinical trials – to illustrate the preliminary signs of immunotherapy success of checkpoint PD-1 pathway inhibition in a significant percentage of patients with MSI-high CRC…. Read More

THANK YOU to all the donors to my runathon first announced back in July!  114 Miles later it raised a whopping $4766 for the national colorectal cancer patient advocacy group The Colon Club.  In particular, I’d like to thank a Novartis colleague who dollar matched all pledges which had a huge impact on the amount of money raised! I will be in touch directly with donors this week. I hope my runathon successfully… Read More

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… Read More

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. My Mom and I were abnormally close – so much so, I could have been called a “Mamma’s Boy” in my younger years.  In fact I was called that (on more than one occasion) but it didn’t bother me because I… Read More

Although our health system is far from perfect, we often forget there are BILLIONS of people in the world without basic access to the latest oncology news and knowledge. With >50 MILLION  social media hits, my oncology researcher colleague Zhizhong “ZZ” Li is changing that fact in China. I wrote previously that through his social media networks, ZZ brought my Stage IV announcement letter originally meant for family & friends to >1… Read More

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