Posted on June 4, 2017
Not with a bang but with a whimper… that is how my cancerversary – my fifth cancerversary – snuck up on me this year.
In previous years, I started thinking about it a few weeks in advance. The feel of late spring in San Diego & the end of the school year may forever be seared into my psyche as the time of year when I heard those fateful words “Your husband has colon cancer, we need to schedule emergency surgery immediately”.
Amelie & Dad – Five years ago this week
But this year was different. This spring I have been squarely focused on multiple medical & advocacy projects in parallel – not as much time for my mind to wander and focus on nostalgic time-points. I think it was on Thursday, when I was laying in the bed post-op from my Y90-SIRT procedure – after being admonished for using my phone which was messing up my blood pressure cuff – that it hit me: Sunday was my FIVE YEAR CANCERVERSARY.
“5-years” has a very special meaning in the cancer world, probably given too much weight, but a part of sociology and society is agreed upon milestones. If you are lucky and show “no evidence of disease” after an initial diagnosis, for CRC and some other cancers – “5-years” is the time point where they say “if it hasn’t come back by now… you don’t have any more statistical chance of a fresh occurrence than any random person off the street”. Rightly or wrongly, it is used as a surrogate for “you’re cured!”. For the less fortunate that are currently incurable, it is psychologically hard not to compare yourself against the published stats of 3-, 4- , 5- etc year survival. In metastatic CRC, once diagnosed, if not surgically curable, a patient has about a 10% chance of being alive at the 5-year mark.
It is into that grand & special 5-year club that I entered into this morning – as I have seen so many…. too many of my fellow patient friends succumb before reaching it. With all those losses, it really doesn’t feel like too grand of a club. Although I assure you I am very thankful to have been granted membership!
Why was I given 5+ years of Life and so many were not? Was it some of the side therapies I researched and did in my earlier diagnosis days? The intense exercise? The veganism? The fact I had a genetically slow growing (albeit prone to growing resistant pretty quickly) disease up until this past winter? Divine intervention? Pure, dumb, blind luck? I will never know… the necessary control groups do not exist to run the scientific experiment to deconvolute the key variables.
But at the end of the day, from my current viewpoint, how I got here is not important – it is that I did! I am living… I am breathing… I am thinking clearly… although still partially immobilized I can play and interact with my kids as a Dad… I can work on amazing advocacy & scientific projects… THOSE are the amazing thing that I am deeply thankful for!
I can clearly remember back – even the fogs of 5-years’ worth of chemobrain can’t steal this from me – the feeling 5-years ago today of “will I see the year 2013”? Literally. Will I see it? Will I see my older girl Amelie enter kindergarten? Will I make it long enough for my younger girl Eleni (1 year old at the time) to have even a fragment of a memory of her Dad? Those are intense & heavy thoughts that no young Dad should have to ponder – but five years ago, they were the very intense thoughts pounding in my mind…
But as they say the rest is history! I didn’t blog the first couple of years, I used mass emails (remember those?) – for each of the annual milestones – and then continuing into the blog age for my 3rd cancerversary and 4th cancerversary – the continuous theme was: IT IS AMAZING HOW MANY WONDERFUL THINGS HAVE HAPPENED TO ME THE PAST YEAR NOT ONLY IN SPITE OF MY CURRENTLY INCURABLE CANCER BUT BECAUSE OF IT!
This took on different forms over the years but the amazing thing as you read through my yearly posts is how each year my Life truly did get better than the previous one on so many levels – without fail! All while battling currently incurable Stage IV cancer! My 3rd cancerversary was written from Colon Camp and the start of my advocacy work. My 4th cancerversary took that start and illustrated how it was being brought to unfathomable new levels with for example a newspaper column in the Philadelphia Inquirer newspaper (!) and it illustrated my continued good health with a celebratory 10k run!
But the 5th year cancerversary today???
I am blown away by what has happened in the past 12 months! The amazing part is that this time period brought me to previously unfelt negative depths of my disease… my disease took off on me… I was life threatened in February & to be honest, really not sure if I would make it short-term… I became essentially bed-ridden, wracked in pain from one set of tumors that had merged into a 6 cm mass – and my body was under daily life assault by an explosion of tumors in my liver, putting it under constant assault. My quality of life plummeted which prompted very uncomfortable thought processes in my brain… My disease largely became FOLFIRI chemo resistant – and my overall health status too dire for me to enter clinical trials. It was the ultimate oh-shit moment.
But… overlaid through all this was not only the most amazing advocacy projects I have ever done – indeed the most amazing advocacy projects I ever could imagine doing – with national media attention from NBC Nightly News, to the opposite end of the spectrum of Fox News, from an incredible one hour interview on The Charlie Rose Show which still blows me away, to multiple STAT News articles & finally most recently to a wonderful column on me in the San Diego Union Tribune. Projects including both the COLONTOWN CLINIC and a Patient viewpoint curated clinical trial finder with Fight Colorectal Cancer. These projects not only I believe are transformative for CRC Stage IV patient empowerment, advocacy and literally health – but also, since they are cancer subtype agnostic, I believe they have the potential to transform the overall field of cancer patient clinical trial advocacy, with necessary preliminary discussions to attempt this in progress!
Not one but two major hacks of the clinical trial system for patients. Mostly done while I was bedridden on high dose pain killers. Mostly done when death was trying to knock on my door. It makes even me take stock, pause & say… wow.
If that isn’t any incredible year – not in spite of currently incurable cancer but because of it, I don’t know what is!
So it is with very mixed emotions I now hit the 5-year mark and enter my 6th-year of having metastatic colorectal cancer. A mixture of: joy, satisfaction, relief, nervousness of what the future holds, excitement for the next round of experimental therapeutic ideas we have tentatively planned once my liver is medically stabilized with Y90-SIRT in August, excitement for the next – ever grander – advocacy ideas planned… Be ready for some plans announcements now that my back lymph node mass SBRT and liver Y90-SIRT medical procedures are done & I now hopefully just settle into biweekly FOLFIRI chemo for this year’s version of a Currently Incurable Summer…
In that way… how did I approach waking up to my 5th-year cancerversary this morning? A quick prayer of thanks and then immediately back to being busy doing “what I do”… write this quick stream of conscious blog entry and thinking/planning the next round of advocacy & medical projects… meant to help an every growing number of Stage IV patients out there in the world that desperately need help.
I can think of no better way to kick off my “Year 6” and I hope & pray that I am fortunate enough to give you an update on the amazing things accomplished 12 months from today, as the vibe of late spring in San Diego reminds me at that time “Hey, isn’t my cancerversary coming up sometime soon?” — as the 2012 memory of that initial feeling of helplessness and fright of potentially not even making it 6 months falls even further into the mists of time…
I normally end with To Life! But in honor of an AMAZING fellow Stage IV thriver Chere Angelic Garcia… I am going to end this 5th Cancerversary post with her favorite saying “Carpe Diem”! Because that really is what Life is all about. Don’t let diagnoses and prognoses prevent you from trying to do everything that you want to do, no matter what that is. Maybe the stats say you probably won’t be here in 6 years… but instead of focusing on that, imagine all the incredible memories and things you can do with family, friends and otherwise if you are? What you accomplish may very well surprise you – in fact, I bet it will.
Carpe Diem!
-Tom
