Goodbye and Godspeed, Dear Friend

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.

28 responses to “Goodbye and Godspeed, Dear Friend

  1. Johna–this hit very close to home for me. Two years ago I was diagnosed with Stage IV metastasized melanoma. I have been on immunotherapy since I (finally) finished all my surgeries. The melanoma struck so many of my internal organs–picture a Jackson Pollack painting. That was what my PET scan looked like. My heart breaks for Tom. Fingers crossed for me–so far so good. It is amazing the breakthroughs in cancer that are happening as we speak. No one should have to suffer through this. Tom was a pioneer.

    Liked by 1 person

    • Johna Till Johnson

      OH! Goosebumps. Lois.. this brings tears to my eyes. There is a very, very good chance that you will eventually hit the point where they have to call your cancer “cured”. Melanoma has wonderful genetic characteristics (well, if anything about cancer can EVER be “wonderful”) in that because it mutates frequently, it’s constantly reminding the immune system it’s there. So immunotherapy works REALLY REALLY WELL on melanoma.

      Fingers crossed for you indeed!

      Liked by 1 person

  2. Thanks Johna. I generally shy away from posts about cancer – not because I don’t care or am in denial of how prevalent and devastating cancer is for individuals, families and societies. Or not because I’m death denying or don’t have compassion. I’ve lost family and acquaintances. Maybe it’s simply because I have a focus in other areas. Howevever, I deeply appreciate your beautiful testament here to Tom, Vlad, all those who suffer the consequences of cancer, and all those who work in the field. Ultimately, you speak of how to live well as how to die well (“Life, after all, is a terminal condition.”) Thanks. And condolences to you and all those who loved Tom & Vlad and others who have yieled to cancer.

    Liked by 1 person

    • Johna Till Johnson

      Yes, in the end, it’s not about the cancer at all. It’s about your stance towards life.

      One of my absolute favorite stories (which I’ll do a post on soon) is about the musician Leonard Cohen, who died last year. He suffered from terrible depression throughout his life, and though he made millions and had relationships with famously beautiful (and deeply loving) women, they all ended.

      When his last relationship ended he threw himself into the study of religion, becoming an ordained Buddhist monk and studying at an ashram in India.

      Somewhere in that journey his depression lifted, finally forever.

      In his early 70s, he emerged…. only to discover that his business manager had stolen all his money, he was broke, and to support himself he had to go on tour again.

      A thing that he absolutely hated.

      His response to learning that his manager had stolen all his money (10s of millions)?

      “Something like that is almost enough to put a dent in your mood.”

      I love, love, love that “almost enough”…..

      Like

  3. Thank-you for this post Johna – came at an opportune time for me.
    Rest in Peace Tom, Vladimir too. Bless you Johna and Tom’s wife and children.

    Liked by 1 person

  4. Thank you, Johna.

    Liked by 1 person

  5. AlanTimothy C. Lunceford-Stevens

    Joanna, what a beautiful obituary for your friend Tom. My heart is with you over Vlad’s death too! Your prose is magnifiant and filled with love. Thank you remembering and not letting these deaths be quiets. We should be on the roofs yellin we want a cure for Cancer. I have my chemotherapy this afternoon. It was delayed two weeks ago as I developed a sensitive reaction to saline. They tried to ban me as there were no other adjuvants to replace the saline. I had to go and argue why I deserved to continue, and the reaction to saline was an itch and smell rash at the arm where the chemo enters my veins. They understood that I don’t have any further reactions to the chemotherapy, Sending you LOVE.

    Liked by 1 person

    • Johna Till Johnson

      Aw, man. It never rains but it pours, right? You of all people know what it’s like never to give up, in the face of discouragement, and illness and despair. Big hug and best wishes for your chemotherapy today. It’s a good day for it!

      Like

  6. Johna, such inspiring words of hope, even while crushing with grief. Thank you, and sorry for the loss of your dear friend and colleague.

    Liked by 1 person

  7. I don’t know what to say. So beautifully written and such another sad, tragic loss for all those that loved and knew your friend and a great loss for the wider world.

    Liked by 1 person

  8. He was so young, so more to give. I am sad for your loss of yet another remarkable human being. Marty

    Liked by 1 person

    • Johna Till Johnson

      Thanks, Marty. It is a loss to many people, not least his family, but also his “extended family” of fellow patients and researchers…

      Like

  9. Such a profound post! Through your words I feel touched by someone I never met.

    Liked by 1 person

  10. Johna, I’m sorry for the loss of Tom, who clearly was an important person to so many people. I read the obit, but your writing here was what I found so moving and beautifully written. I dealt with my mother’s pancreatic cancer in 1998-99, so this is a world I have experience with, and your words are right on. Thank you for your work, and for keeping this blog alive through trying times, while doing challenging work. And I love your words above in a reply: “Keep creating beauty. It matters.”

    Liked by 1 person

    • Johna Till Johnson

      Thanks, Lynn! Your words mean a lot. I particularly appreciate the encouragement on the blog… big plans for it as we head into 2018!

      I am so sorry for your mother’s (and your) experiences with cancer. This disease is brutal…

      Liked by 1 person

  11. Cancer has torn my family to pieces. Grandparents, mother, brother, me. On the other hand. I have learned that we all die — this way or that way or the other way. These are men who fought the good fight and maybe, down the road, we will all be better off for their having been with us. Thank you for this beautiful piece.

    Liked by 1 person

    • Johna Till Johnson

      Oh, Marilyn, I am so sorry to hear that!!

      And thank you for writing, and for keeping the faith. Not much else we can do, but we can do it with chins held high, right?

      Like

  12. A very moving post. Very sad yet with an upbeat message too.
    My heart goes out to the wee girls who have lost their Daddy. They will grow up being so proud of him.
    I lost my beloved younger brother to cancer a couple of years back. Right up until the end I know he would have endorsed everything you have said here.
    Thank you for writing this.

    Liked by 1 person

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