True Faith (FAVORITE POSTS OF 2016)
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 is how I started out the companion blog post to this one – in that case my favorite posts of 2015 written exactly a year ago…
To say that 2016 was an order of magnitude more incredible than 2015, in every single facet, would be an understatement. Looking back, I don’t even know where to start – there were so many incredible experiences on an almost daily basis that Life felt like the transition from Black & White to Technicolor in The Wizard of Oz. Now that I am closer to 5 years out from my original diagnosis than to 4, even reading that blows me away – I truly feel like I have lived a charmed life this past almost half a decade since my cancer diagnosis. And what an almost half a decade it was… with the current capstone in experiences being 2016.
2016 truly was a year of the highest of highs and lowest of lows. I’ll primarily focus on the highs today but you can’t have Yin without Yang – and the year did have absolutely shattering lows as well. From the deaths of numerous friends (as a partial list – Lindsey, Leta, Kenny, Danielle, Nathan, Colin, Rachel, Marie, Vlad…) to early-onset (young age) colorectal cancer (CRC), to aspects of my personal life that even I am still not comfortable blogging about. But in all cases, after a moment of mourning – I was able to pick myself up again and focus on keepin’ on keepin’ on… When you are confronted by being “currently incurable” (and now for added excitement, chemo-resistant!) yourself and by countless friends around you, what are you going to do – give in to despair? Or focus on the Power of Stage IV cancer hope? I think you know the answer to those questions since they were the focus of not only one of my Top 15 favorite posts for 2016 but in fact both my favorite and my most popular/shared personal post of 2016! (see below).
I’m a Patient, a scientist and an advocate. 2016 was simply an incredible year in all 3 facets of my Cancer Life.
My stories of patient life covered more than chemo schedules in 2016 – much much more. I started out the year skiing down a mountain with my 8-year old daughter in a blizzard while undergoing FOLFIRI. FOLFIRI hits me very hard with fatigue, so in some ways it could be called the year of the narcoleptic nap. But in the midst of that, I ran the running leg of a charity team triathlon. My personalized immunotherapy project gained steam and was publicly disclosed for the first time – first in this blog and then in the major biomedical news media. I reflected on Fatherhood in the midst of cancer and I lived an incredible Stage 4 #cannonballlife summer – a summer of both family fun and fellow CRC survivor family fun – culminating overall in a summer of no regrets. Upon entering the Fall, I was confronted with both cancer pain for the first time and well as the exciting prospect of entering my first immunotherapy Clinical Trial in the nick of time, just as my tumors started to show chemo resistance. Surrounding and embedded in all of these stories was the never ending Power of Stage IV Cancer Hope.
2016 started out with my at times bold “New Year’s Day” predictions for CRC immunotherapy in the years to come. In addition to writing a number of posts on my personalized neo-antigen project starting in March, I also spent a lot of time in 2016 discussing a potential advance in MSS-CRC immunotherapy announced at ASCO-2016 with the combination of a MEK and PDL1 inhibitors appearing to provide objective response rates/tumor shrinkage starting with this post and ending here. Branching out, I tackled scientific topics such as fasting during chemo and repurposed drugs with published objective responses in MSS-CRC patients for the first time. My science posts for 2016 culminated with a scientific discussion on the oncolytic virus + PD1 inhibitor Clinical Trial I am VERY excited to enter in early 2017 as well as the very exciting (!!) story of my close friend Celine Ryan in THE FACES OF SUCCESSFUL COLORECTAL CANCER IMMUNOTHERAPIES: VOL. 2!
If all of the above wasn’t enough, 2016 was especially the Year of the Advocate for me! I tied up advocacy partnerships for South America and expanded further into Europe with both Czech and Dutch versions of my website. I entered into the world of political lobbying in March at Fight Colorectal Cancers “Call of Congress”. My reach into the mass media world began with becoming a regular columnist for the Philadelphia Inquirer on Stage IV life and issues which has been a blast of creative writing fun I am so thankful for! I became a full-fledged member of the Fight Colorectal Cancer-Cancer Research Institute Immunotherapy Expert Working Group and was a co-author of a submitted “CRC immunotherapy blueprint” paper which ironically will probably be the biggest publication of my professional life. I was invited to give an advocacy talk at the world renowned MD Anderson Cancer Center and because of the huge success of the highly innovative COLONTOWN CLINIC project, I was interviewed for national TV by NBC Nightly News with Lester Holt. What an incredible year for a simple medicinal chemist until he got cancer…
Reading Back on 2016
As I reflected above back on the three facets & key moments of my life that I blogged about in 2016, this led me naturally to reflect back to specific blog posts in 2016. There were a lot of them to choose between!
Listed below are my personal Top-15 (and highlighted #1!) favorite posts from 2016, 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.
For new readers, this list offers a guide of the 2016 posts to pay the closest attention to – the key moments of my patient, scientist and advocacy life for the year.
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 2016 I lived and experienced.
Repeating what I wrote in the 2015 end of year summary
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.
Time to take a blogging break until 2017. We’ll be celebrating a Family Christmas at the Grandparent’s house including a downhill ski trip (mirror bookending the beginning of 2016’s blog). It will be interesting to see how my new painful back tumor cooperates – but only one way to find out! 😉 NO FEAR.
The final blog post of 2016 started with one of my favorite songs of all time “True Faith” by New Order, now to end… Merry Christmas, Happy Holidays, Happy New Year (I’m personally expecting 2017 to be even more exciting & fulfilling than 2016!) and THANK YOU for reading and joining me in my True Faith in the power of good in humanity, the power of social networking, the power of science and the power of HOPE. Across >130 countries, readership now in 6 languages, we are all interconnected together on this long strange trip called LIFE.
2016 Recap: My Top 15 (and #1 ***) Favorite/Key Blog posts in Chronological Order
- MY NEW YEAR’S VISION OF A COLORECTAL CANCER IMMUNOTHERAPY FUTURE “As I mentioned, history will be the judge of my accuracy. Although bold & optimistic – as a scientist I am comfortable making these predictions as just that, current predictions (not promises) – as a patient & an advocate I am filled with Hope that they will come true. Hopeful for my CRC friends, hopeful for the entire CRC community & hopeful for myself.”
- MORE THAN ONE WAY TO BEAT CANCER: DAVID BOWIE 1947-2016 “Not all of us cancer survivors are international music superstars. But we can take inspiration from David Bowie. I hope as many of us as possible can be medically cured. For those that can’t, we can beat cancer in many other ways. By not allowing it to negatively change us. To keep living the best life we can, on our own terms, for as physically long as we can.”
- NO FEAR – ONE YEAR LATER “A full year later after a number of treatment changes, two lung RFA surgeries (causing one collapsed lung), two ER trips & a return to relatively harsh FOLFIRI chemo – here I was racing down the mountain along with my 8-year old daughter, both of us exhilarated in that moment by the challenges & successes of life. Of life itself.”
- THE FIRST OF TOO MANY – LINDSEY MOTLEY “If anyone wonders: why do I do what I do? Why am I continuously more passionate for oncology drug discovery and explaining science to too many fellow patients that need help? Why am I passionate that a CRC breakthrough be found not only for myself but others as well? An incredible woman named Lindsey who died today before her 30th birthday – and too many others like her – are the reason. Lindsey inspires me daily and I think of her whenever I carry on… what started with her.”
- SCIENTIFIC GUARDIAN ANGELS APPEAR: VOL. 2 “But science aside, to me that is the essence of Hope. Believing in your heart that no matter how bad things look at a given moment – there may be a new door, of some type, appearing before you, ready to be opened. Maybe not a door you specifically asked for or ever envisioned (I never envisioned my current project!) but a door leading to something positive none the less. We can’t chose the exact path that Life leads us, and Life will include both good and bad events – but the bad events pass and some sort of good will find a way to return. I have Faith in that. I have Hope. I am firmly Terminally Optimistic”
- REDWOODS REFLECTIONS “Father-Daughter memories have and will continue to be made. Cancer… healthy… forest… city… In the big scheme of things, the details really don’t matter. Surrounded by the business of Life, your daily interactions & memories with loved ones are probably meaningful in more ways than you realize. I had to temporarily long for my past this morning to remember the joys I have in my present. All of this via one random snapshot from 4 years ago today.”
- ASCO 2016 PREVIEW: CHECKPOINT IMMUNOTHERAPY ACTIVITY IN MSS COLORECTAL CANCER “Data specifics aside… that is the HUGE impact of one little study like Abstract 3502 / NCT01988896. It gives scientific insight… it gives scientific guidance… it gives scientific Hope… to those that need it the most: us, in the Stage IV MSS-CRC patient population. Even with its small 23 patient size, that is a mighty powerful study indeed.”
- A CURRENTLY INCURABLE SUMMER VACATION “And for that opportunity I am very thankful. No matter what your situation, enjoy making some good memories the next couple of months. That is what summers are for.”
- BAND OF BROTHERS AND SISTERS “One way or another, we have all been surrounded by cancer life & death. But… we have all persevered despite this and we were together, even if only for a moment, embracing and living LIFE. Words can’t describe the level of shared experiences we have had and because of that, we have bonds beyond belief.”
- LIVING AN INTENTIONAL SUMMER WITH NO REGRETS “Tomorrow, I return to the world of CT-scans and tumor blood marker tests. To doctor appointments and infusion centers. To chemotherapy and treatment. I’ll find out shortly what the medical costs were from my currently incurable summer vacation. No matter the test results I receive in the coming days, I will have no regrets. I lived my life to the absolute fullest this summer and I made many memories to last a lifetime – both for myself and for those I was with. As the sun sets on my currently incurable summer vacation, I’ll end with a paraphrase of how I started it: “And for that opportunity I am very thankful. No matter what your situation, I hope you have enjoyed making some good memories the past couple of months. That is what summers are for.””
- THE POWER OF STAGE IV CANCER HOPE *** (Both my favorite & most popular post of the 2016) “At the end of the day… no matter what the specific flavor you personally hold… without Hope, none of us – cancer survivors or otherwise – would truly be alive”
- MY VERY OWN CITY OF HOPE: MSS-CRC CLINICAL TRIAL #1 “My overall strategy over the past year and a half has been to lay the groundwork for trials, working around my melanoma issue. As I indicated earlier in the post, I have absolutely zero intention of dying of CRC in my 40’s. Not if I have any say in the matter! The way I always picture it: My goal is to line up clinical trials like planes on a taxiway… Time for the first flight to take off! Exciting days lay ahead in the very near future. To Life!”
- IT ONLY TAKES ONE WEAK LINK IN A CHAIN “That pesky weak link in my chain… it had better be ready… I don’t think it will know what hit it. First plan of attack: how about 3 trillion virus particles genetically engineered to seek out and destroy CRC? I like the way that sounds. A lot.”
- THE TIMES THEY ARE A CHANGIN’ “It all comes down to this… if I am facing death in the face – I see my choices as either “try & perhaps die trying” or… “die” – I think my choice is clear. Time to say good bye to chemo today & prepare for my new adventure 🙂 To Life! Bring it on!”
- INTERVIEW WITH NBC NIGHTLY NEWS: THE COLONTOWN CLINIC “I believe this project is changing people’s lives. I believe it will impact the system, especially because I don’t think there is anything CRC-specific about the concept. It could be done with any cancer type and probably other disease areas as well.”
- THE FACES OF SUCCESSFUL COLORECTAL CANCER IMMUNOTHERAPIES: VOL. 2 “The world needed a first published “proof of principle”… that this (any!) immunotherapy technology could achieve a “clinically disease-free” state in MSS-CRC, a type of cancer which desperately needs immunotherapy breakthroughs. I am beyond excited that my friend Celine is that first person.”