Monthly Archives: May 2017

Friend and hero both

Tom Marsilje is an extraordinary human being. He also happens to be on the short list of those who have made it possible for me to extend my stay on earth. Tom codeveloped ceritinib, the first second generation ALK inhibitor, which became available in clinical trial in 2011.

Ceritinib (Zykadia) was my stepping stone after coming to the end of my three year run on crizotinib (Xalkori). Without it I would have had nowhere else to go, treatment wise. My gratitude to Tom is without bounds.

What I could not have predicted is that Tom and I would eventually become friends. This happened after his own diagnosis with stage IV colon cancer. Suddenly I had something to offer my savior, in the way of initial inspiration.


Two miracles of science

However, Tom has forged his own amazing path as a patient and super advocate. The father of two young daughters, his will to live is fierce and he has deftly utilized his experience as a scientist to design his own treatment path in a way that few are able. However, he has not focused solely on his own survival, as he has shared both his experience and his knowledge in a blog, Adventures in Living Terminally Optimistically as well as a column written for the Philadelphia Enquirer. Tom’s primary passion has been to make clinical trial information available to colon cancer patients in a format that is expedient, accessible and easily understood, and with the support of Fight Colorectal Cancer and Flatiron Health he has developed an app to help late stage colorectal patients locate clinical trials.

All of this while moving from treatment to treatment, as well as devoting precious time to fatherhood. Honestly, I have no idea how he does it.

The San Diego Tribune just ran a lovely piece on my friend Tom Marsilje with an accompanying video. I was touched to see that our friendship got a mention–I am the ‘woman with stage IV cancer who has now participated in three life-extending trials.’ What is not said is that Tom made trial number two possible.

We have a pretty special bond, me and Mr. Marsilje. I am endlessly grateful, constantly in awe, but also quite mindful of the difficult path he is on as he battles his own disease. Keep him in your thoughts.

Not the usual suspect


The view out my window

Since moving to Lowell I have been taken for an undercover cop (two occasions), a prostitute and now, perhaps, a suspect. Maybe I missed my calling and should have been an actor.

About those cases of mistaken identity. I spend a lot of time traipsing around, my chief form of local transportation and exercise as well. I walk alone–well, I did, prior to Kumo coming into my life. And I am a woman–a woman walking alone in my neighborhood is less common.

The first time I was mistaken for an undercover cop, I was moving fast but also stopping occasionally to take pictures with my cell phone–all for art. However, that’s likely not how it appeared to the group assembled on a front porch nearby. As I passed, one young man stood up and aggressively greeted me; ‘Hello Officer.’ I kept walking but was so caught off guard that I turned to him and said ‘Who do you think I am?’ At which point one of his companions, a woman, yelled back ‘You know you are!’

I was both confused and somewhat shaken–obviously being mistaken for a cop was not something that commanded either affection or respect. When I got home I googled ‘what does an undercover cop look like’ and was surprised to see that I fit the description perfectly. Tall, fit, hair cut short. Wearing jeans, t-shirt, athletic shoes. Yep, that was me.

The second time it was just a bunch of kids smoking weed and I think I simply glanced a little too long in their general direction.

And as for the prostitute–I was coming home from Boston one night on the train and got in well after dark. I wore a summer dress as I walked home from the station–alone. I was waiting for the light to change on Lord Overpass and an older guy in a car slowed way down, leaned out his window and said something that made it clear he thought I was soliciting. Well now.

But yesterday took the cake. Two days ago a woman was murdered several blocks from where I live and her suspected killer, who had previously served time for slitting another woman’s throat, has not been apprehended. A couple of helicopters had been hovering overhead for thirty-six hours, presumably part of the search. I took Kumo out for his afternoon walk and as we headed downtown, almost two dozen squad cars, marked and unmarked, went whizzing by–sirens wailing. I thought perhaps the manhunt was coming to a conclusion.

As we circled back to our neighborhood, I saw that there were now five helicopters. A block from home I took out my phone to video this crazy scene and had the distinct feeling that I was being watched. I looked up and one of the helicopters was hovering directly above me, where it stayed for some time. What the hell, I thought.

Finally it moved on and when I got home I opened an email from one of my neighbors with a description of the suspect. Male, with my coloring, neck tattoos, 5’10” tall and wearing jeans, a blue zippered hoody, and black and white tennis shoes. Wrong sex, same height, but damned if I wasn’t wearing exactly the same clothing.

I have to imagine that up there in those police helicopters, they have some sort of way of estimating height but probably also a facial recognition system, which would have quickly let me off the hook. However, sometimes it’s all just a little too close for comfort.

Each of these instances is also an interesting commentary on the assumptions we make about each other based strictly on appearances–how extraordinarily off base those assumptions can be. In my case, I am who I am. Someone who is both less healthy than she looks and more healthy than her diagnosis would suggest. Strong enough to be out and about and even mistaken for those in wildly different walks of life. So much more than just a lung cancer patient 🙂