I’ve just celebrated my third Christmas since diagnosis. Amazing. In writing this I have realised that I no longer measure my age or the passage of time in reference to my birth, but rather to my diagnosis. A strange and rather horrible re-birth – no longer nearly 37 years old but instead nearly three.
2017 was a mixed bag. Like almost all of us I breathed a sigh of relief at the end of 2016 and hoped that 2017 would be better. In some ways it was and in other ways not so much.
I made it through two major operations and a couple of smaller ones. I had more chemo. I went overseas. I struggled with balancing my fate with living now.
I’m relieved to still be here and pretty well but I’m a bit lost. I need to plan a future but am all too aware that the future is not guaranteed. However I cannot live constantly hyper aware of my mortality. Life is the beautiful and the terrible, but mostly the mundane. Living fully I think requires some acceptance of and residence in the mundane. I am trying to remember this on a daily basis but as was so well expressed in a book I recently read: “these damn epiphanies – they come and they go and they refuse to stay.” (Alyson Foster – God is an astronaut) So what will my 2018 look like? I hope for more chemo, a bit of travel, some beauty and lots of mundane. I know there will also be some terror.
I’m taking the following very wise words from a member of Colontown as my guide for dealing with the terror. These were shared in a Facebook group I am part of called Colontown. A key member of this group was Tom, an oncology drug researcher and Stage 4 patient who set out to demystify the science behind emerging treatment for other patients. Tom died in late 2017. His death hit us all very hard. It was sad and scary and discouraging.
Shortly after Tom died, another member posted this amazing statement on the group. I have tried and tried to find her post to ask her if I can share it here, but it seems to have disappeared down a Facebook rabbit hole. As context, her husband Vlad also died of early onset (i.e. diagnosed before 50) colon cancer. I think these are some of the wisest words I have come across in terms of living with cancer.
“Some thoughts on Tom, and the impact of his death on me and on us. It is totally ok with me if you don’t want to read this; I’m posting because it’s how I feel and I think it might be helpful.
Some background: Tom and I were friends in real life, as well as on Facebook. We visited in NY and CA. He knew and respected Vlad, and vice versa.
He coordinated closely with Vlad (neuroscientist) and Dan (Vlad’s best friend from grad school, and an immunotherapy researcher at Emory). We would literally strategize together (the four of us) about the most promising treatments. Vlad was the most skeptical (he knew the odds, and also the science).
So to me, Tom wasn’t a superhero, he was a really smart scientist with early insight into how science was turning into cures.
As we all know, he also had that incredibly contagious combination of optimism and humility. So basically, anyone who interacted with him walked away feeling, “Heck, if it can work for Tom, it can work for me!” (or my loved one).
The fact that it did NOT work for Tom is a gut-punch to many folks. I mean, if super-hero-cape-wearing-scientist died ANYWAY, what are the chances for us ordinary folks?
I didn’t have quite that reaction, because I knew him better, and knew the science pretty well.
Here’s the thing.
Tom’s approach was spot on, and it continues to be spot on:
Step 1. Stay alive, and as healthy as you can possibly be, for as long as you can. That means: Build an exercise, nutrition, and treatment routine that works FOR YOU. That could be 5 minutes a day of yoga and a steady diet of Bic Macs to keep the weight on. You don’t have to run triathlons. Do whatever works for you.
Step 2. Take joy in every day, and every moment. Your “joy intake” is as important as what you eat, drink, and do. That new puppy might possibly have the same ability to inhibit tumor growth as the latest radiation therapy.
Step 3. Stay on top of the research. Keep leveraging your network. We are here, and we’re NOT going to stop researching for you.
There is going to be an exponential explosion of new treatments over the next 5 years.
I know this. Tom knew this. Vlad knew this.
Some treatments will work amazingly.
Some will keep you alive until the next treatment. And some will fail.
The stronger you are, the more runway you have, and the more treatments you can try.
And the more knowledge you have, the better able you are to point that runway in the right direction.
That’s what Tom did. And it DID NOT fail him!!
The science failed him, as it failed Vlad, and will continue to fail people we love (maybe even us).
Until it doesn’t any more. That’s how science works. It fails, until it doesn’t any more.
And we are so, close to the science not failing any more.
As awful as it is to say this, if you’re reading this now, you’re already ahead of Tom, because you’re 24 hours closer to that day (very soon now) when the science won’t fail us.
Why am I writing this? Because I know how devastating it is when your magic talisman for the future fails. I’ve been dreading Tom’s death less for the loss of the unique and beautiful soul that he is, and more for the fact that I’m afraid it will emotionally devastate so many people that I love, because they will lose hope.
And it does devastate people. I can’t fix that.
The only thing I can say is… following the three steps above is what Tom did, and what he’d want all of us to do.
And what, in my considered opinion as a scientist and engineer, is what is most likely to result in the CURE of everyone dealing with this awful disease.
And a permanent cure is NOT an unrealistic hope for people dealing with this disease. A long shot, yes. But It’s out there, and very, very close.
I hope this was helpful. And I know Tom is fighting for all of us, still.”