The downstream effect of two miracles of science

My friend Dr. Tom Marsilje wears a number of hats–devoted parent, dedicated scientist, cancer patient and absolutely amazing advocate/activist.

Tom holds a special place in my heart and personal history but sometimes I have to stop and remind him; we both suffer from chemo brain, a subject he recently covered in his column for the The Philadelphia Inquirer.

He was in town briefly last week so we met for lunch and a photo op in front of Miracle of Science in Cambridge. I mean, how could we not.

Linnea and Tom: two miracles of science

Linnea and Tom: two miracles of science

After snapping our selfie we headed down Mass Ave to Flour, one of my favorite little cafes. Lunch banter was about any number of things including Tom’s relatively new role as a writer, and he noted that it makes him feel good to be really making a difference. I just looked at him incredulously before exclaiming “Dude!”

At this point I should remind you that Tom codeveloped LDK-378, the second ALK inhibitor I was on trial for. Also known as ceritinib and now marketed as Zykadia.

I then used my finger to draw an imaginary line on the table. “This” I said, “is my lifeline. And this is where I started taking ceritinib. No ceritinib and my lifeline stops right there.” And then, for further emphasis: “I am alive because of you and don’t think I ever forget that, even for a moment.”

By this point I was getting a little weepy. I went on to say that if Tom were a war hero rather than a scientist who developed a lifesaving drug for a pharmaceutical company, than his role would not be so seemingly anonymous and that he would be celebrated. But that the lack of accolades in no way diminished what he had already accomplished, which was to extend the lives of so very many ALK positive cancer patients. Including yours truly. And that I was grateful to the moon and back.

Such a tight connection between the individuals who come up with these drugs and those of us who take them. A lot of cause and effect going on there and to think that Tom and I would have the opportunity to also develop a human connection is just way, way cool. This guy had my back long before he ever met me (but must of known of my existence as an ALK+ individual). Gotta say I’ve got his back now but sometimes that just feels like hanging onto contrails as he’s jetting around with astounding energy and putting his fine intellect and experience to work as an advocate/activist for patients with advanced cancers. I feel both honored and blessed (and damn fortunate) to have him in my life.

Which leads me to this closing thought: maybe we should nave a national hug a medical researcher day. Followed by a bunch of bang up fundraising.

xo

9 responses to “The downstream effect of two miracles of science

  1. Hi Linnea and Tom!! Wow!! What powerhouse human beings. Thank you for this post. Tom, I read up on you too. What gifts you and Linnea share with us. I forward all of this to my family and some friends. Only friends who I think can handle serious deep issues. Not too many to tell the truth. It’s scary. I signed up to get emails on your progress Tom. You both look so healthy and full of a higher joy and spirit than most can imagine. All my love.

    Linda

    • Thanks Linda and hello! Tom and I also spoke about how our diagnoses have compressed the way we view life (in a good way)—making everything more intense, more colorful, more vibrant and in the moment. And that even though we both understand that our lives will be shorter than we once thought, we wouldn’t give up all the love, people, experiences and the technicolor existence that our cancer has caused in our lives. How’s that for some positivity!

      xo Linnea

  2. What an incredible guy think how many people he has helped and how people rarely get to thank the person who created the drug that keeps/kept them alive what an amazing bond that must have given you both when you see him say thanks from me too I haven’t had to use it yet but glad it’s there when/if I have too!! Keep on trucking Linea you are amazing xxx

    • Mel, thank you 🙂 I hope I made it clear to Tom that my thanks was not just on my own behalf. I told him he is a literal lifesaver—what a cool thing to be. And now he’s working hard to save his own life and man, are a lot of people pulling for him.

      xo Linnea

  3. Love this, Linnea! How special for you and Tom. Your smiles say it all. For anyone who wants to join the bang-up fundraising you mention, here’s one small way — a birthday party I created to help non-profits. Info here! https://www.peoplesenseconsulting.com/graceful-giving-birthday-party/

  4. Lovely essay, Linnea. A tribute to the heroes in the labs…doing the so-often unheralded work that give us so much hope.

    • Thank you Kristen. I wish we had the opportunity to interface with those who toil for a cure more often—it’s good for them to put a face to our disease and good for us to have a chance to let them know how much we appreciate all the hard work (and to keep it up!).

      xo Linnea

  5. National Hug A Medical Researcher Day? I am SO in! It is awesome in the old sense of the word that you have been able to connect so deeply with the researcher who saved your life.

    Both of your blogs are very special to me.

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