Category Archives: The Virtual World

By Johna Till Johnson

Tom on father/daughter day, 2016

Earlier this week, a man who had become very dear to me and to Vlad slipped the surly bonds of earth.

Tom Marsilje, a cancer scientist, patient, and patient advocate, left this world on Tuesday November 14. I can’t write a better obituary than the one that appeared in the Philadelphia Inquirer, for which he wrote a regular column.

As with Vlad, Tom’s loss is more than personal. He was a beacon of hope and optimism for all of us dealing with cancer, in no small part because he lived every possible role in that experience.

As a graduate student, he became caregiver and patient advocate for his mother, helping to get her into one of the earliest immunotherapy clinical trials (in 1999) and quadrupling her life- and health-span in the process. He went on to co-develop a breakthrough drug for lung cancer. And from the time of his diagnosis in 2012 to his death this week, he experienced the disease “from the inside”–all the while serving as a guiding light for those of us in the same situation.

The loss of that light, as much as of Tom the person, was a real blow to all of us in that world.

And because cancer will strike nearly 1 in 2 of us, and touch the lives of nearly all of us, I’m including here a Facebook post I wrote for my friends in the cancer community (and yes, I hate that there is such a thing, as much as I love the fact that through it I’ve met some of the smartest, bravest, nicest people on the planet).

Tom’s approach is not a bad way to live for any of us, cancer or no.  Life, after all, is a terminal condition.

Some thoughts on Tom, and the impact of his death on me and on us. 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. Anyone who interacted with him walked away feeling, “Heck, if it can work for Tom, it can work for me!” (or my loved one).

So.

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 is lost.

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 know Tom is fighting for all of us, still.