I just missed World Lung Cancer Day. Well, not quite. I did spit out this tweet:

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For those who were able to post something inspirational, I have nothing but respect. But I just found myself unable to embrace the concept of a day devoted to lung cancer.

That’s because for those of us living with this disease, every single day is lung cancer day. And every single one of those days, we wish it wasn’t.

If we’re not dying, our friends are. This disease is a holocaust, a catastrophe, a fucking disaster. And although there is nothing wrong with ‘raising awareness’, we absolutely cannot stop there.

As important as it is to inspire, it is also necessary to incite. Complacency equals complicity, folks. And if we are going to inspire anything, it should be a sense of urgency. And raising awareness? Let’s put the money where our mouths are and raise funds; moneys for lung cancer research. How about devoting November to one giant bake sale? Or a virtual bake sale, with a go-fund campaign devoted to lung cancer. Let’s make our goal a million dollars. I mean, why not?

A cookie for a cure. Let’s do it.

On Privilege

My morning ritual now is to roll out of bed, release Kumo from his crate for a brief hug and scuffle, pull on yesterday’s clothes, grab leash, keys and sunglasses before heading out the door for an hour-long walk with a little white dog at my side.

We have become a bit of a fixture in this neighborhood and it is no longer unusual to have people wave or offer a greeting. On this particular morning we saw a young woman jogging and I thought to myself that the U Mass students must be returning. Later, as we crossed a bridge, we moved over to let a young man on a bicycle pass. He too appeared to be a student–nice bike, preppy clothes, trim hair and eyeglasses, smelling freshly scrubbed as he rode by.

As pedestrians, we had the actual right of way on the sidewalk and yet it is my practice to move over for cyclists, a gesture which is almost always acknowledged with a smile or a thank you.

However, this young man, who looked the very epitome of privilege, did not appear to notice the woman and her dog (us), scrunched against a traffic barrier so that he could pass without dismounting. This irritated me–in a way that it would not have had he not possessed the air of privilege. I berated myself for feeling judgmental–perhaps the young man was simply shy and lacking in social graces.

However, it got me thinking.

One of the privileges of privilege is a special set of blinders; if you are privileged, you are also unaware of your privilege because it is something you take for granted.

Privilege is autonomic–like breathing, or the beating of your heart. If you are privileged, you don’t give it much thought–again, the privilege of privilege.

Of course, there are so many layers to privilege, something I was reminded of when we walked by a group of construction workers and one of them laughed in a lascivious way. It is a laugh I am all too familiar with–one that connotes a very different sort of privilege.

I gave this more thought. What a privilege it once was to lie on the beach rather than in a CT scanner. And what a privilege it is to lie in a CT scanner rather than on a table in a morgue.

It’s all relative, privilege.


Terminal, incurable, alive.

It’s a heady mix. You have advanced cancer which is, by definition, both incurable and terminal. And yet, thanks to ‘the wonders of modern medicine’, you’re alive–aka–not dead yet.

Because you prescribe to not just a glass half full but rather a ‘my cup runneth over’ mindset, you always try to stay focused on the bright spots. First, waking up in the morning. Never, ever, taken for granted. The chance to see your children even a few minutes longer–mind blowingly awesome. Meeting fellow travelers on this friggin ‘journey’–others who’ve been smacked upside the head with cancer–your life has been made oh so much richer by each and every one of them. And then there is the fact that you get to hang with your oncologist (a goddess) and a bunch of swell nurses—perk and more perks.

So yeah, you’ve been fortunate. And at the moment, you are on a targeted therapy that is keeping your cancer in check. You don’t even look as if you’re sick, let alone terminal.

Which, by the way, makes it very easy for those around you to forget that you have cancer at all.

But you, you’re always aware. Friedrich Nietzsche once said “That which does not kill us, makes us stronger.” Bullshit. Sometimes it just keeps on trying.

Each day you continue surviving is an achievement. It is also a tremendous struggle–physically, mentally, emotionally, financially. An endless struggle too, as there is no top of the mountain, no victory lap, no cure in sight.

The heady mix becomes a mind fuck. If you are lucky, you have adequate support. Enough resources so that you don’t live in a constant state of anxiety; friends and family with sufficiently long attention spans who don’t drop away when terminal becomes chronic.

Because the truth is, nobody wants to think about cancer all the time. My marriage ended, in large part, because my partner found our lives too ‘cancer-centric’. I’d break up with cancer this very moment if I were able to, but it seems we are one and the same. Cancer doesn’t just inhabit my body, on a cellular level, it is me. My own selfish, nihilistic and wildly dis-obediant cells.

Sigh. Living well may be the best revenge and most of us do whatever we can with what we have to work with. I’m certainly not interested in becoming a schadenfreude. However, when living itself (liv·ing: a : having life) is a big fat uncertainty, then living well often requires more psychic energy than a person can muster.

Short of curing cancer there’s not much you can do other than to be understanding. And supportive. It’s not easy living with the knowledge that you are terminal; harder still to remain happy while doing so. Honor that.

The pass it on power of media

Those of us who are ALK+ (alkies) have a Facebook group (ALK-I.E.S. Worldwide–it is a closed group–limited to those who are ALK+, message the moderator for permission to join) started by Tom Carroll and his wife Merita (Merita is the patient/mutant). This group operates as both a forum and a source of support, and has a growing membership of ALK+ patients and their caregivers which is worldwide.

Earlier today one of the members asked for the link to a story I appeared in some eight years ago, on June 2, 2009. They were inquiring as they’d been introduced to Bill Schuette, another ALK+ patient, and he had referenced this particular news story while talking about his own cancer journey.

I found the link, which was kind of fun as I had not watched it in years. More fun still, in the ensuing online conversation we learned that Bill provided essential information to another alkie, Catherine, who in turn helped Jeff, also ALK+. Bill himself joined our conversation and provided a link to a video he made at MGH. Watched in conjunction, our two videos are such a splendid example of how media has the (exponential) potential to help someone else. And social media serves the same purpose–as we make connections and share information and resources.

Linnea and Bill. Connected 🙂


It’s a jungle out here

Pretend for a moment that one hundred people are standing in front of you. The only thing you know about them is that they all have lung cancer. One at a time, each person approaches you and then shares some intimate detail about their lives. Sometimes you sense that you have much in common with the speaker, sometimes little. In each case you get an overwhelming sense of their humanity.

You are thinking about how you would like to get to know some of them better when I drop a bombshell: only eighteen of these people will be alive in five years.

It shocks you but I assure you I have not told you this merely for dramatic effect; statistically speaking, this is an actual scenario. The five year overall survival statistics for all stages of lung cancer cancer are only 18%. At stage IV, that number drops to 2%, or just two individuals out of one hundred.

Statistics only tell part of the story because numbers are not nearly as compelling as living, breathing human beings.

Now imagine what it’s like to be one of those hundred; that you too have been diagnosed with lung cancer; that you too will fall somewhere along this statistical curve.

It is a terrifying feeling, and isolating as well–as many of us feel that friends and family can’t really comprehend the sometimes debilitating anxiety that is part and parcel of our diagnosis.

We often combat that feeling of isolation by connecting with others people living with lung cancer–through support groups, social media, summits, or advocacy work. However, this network can become a double edged sword, as we are now invested in each other’s outcomes. When one of us passes away, a collective shiver runs through the entire community. We grieve, we rage, but we also rightly wonder if we might be next.

Over time, it becomes a trauma–this mix of fear and sadness. And for those whose cancer is considered incurable–and in the case of lung cancer, that would be most of us–there is no post to our traumatic stress. It is ongoing, or OTSD.

We focus on staying alive even as we worry–constantly–about dying. And, because we often don’t look as if we are ill, it is very, very difficult for those around us to fathom what it’s like to live on borrowed time.

Can you plan a vacation six months from now? Is it worth spending the money to get your dental work done? Will you be there when your kids graduate from high school?

As a society there is a great deal of emphasis on planning for the future. When you are living with cancer, it often feels as if the future has nothing to do with you.

I’ve now been living with the idea of dying for over twelve years–more than 20% of my time on earth. How do I do it? One day, one moment, one person at a time.


xo dedicated to all we’ve loved and lost–far too young, far too many

*thinking of you, Kimberly.



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 🙂