Tag Archives: lung cancer

Role call

So I have made it a habit of stating on the 1st of November that I don’t do lung cancer awareness month. That not only every month but every day is all about lung cancer chez Linnea. Make that every moment. Each breath.

Yeah. I don’t like the word survivor either. I am surviving; a verb, not a noun. And frankly, by the skin of my teeth. No winner’s circle here. Whatever sort of race this is, I am still in the thick of it. In fact, one of my mantras is that if I just keep moving…I’ll just keep moving.

Lung cancer. I kind of view it like some sort of play. I’ve been showing up for practice for almost fifteen years now even though my part really sucks. However, I am only too aware that others, with equally shitty billing, had shorter runs.

I know I can’t complain. And that honoring my commitments is my only attractive option. This November is going to be one for the books–in terms of performances.

Today we began moving into our space for the House of Redemption. By the end of next week I hope to have my studio set up, so that I can get back to making art.

On November 14 I see Alice again and my guess is we are pulling the trigger on chemo–time to up my vascular consumption of platinum. My TEDX talk is on November 23. I have signed on as a consultant for Novartis per patient centricity starting November one and will be serving on a panel for Takeda in mid November discussing the very same topic. On November 16 my oldest child turns 35 (!) and on November 26, I will ease on over into my sixth decade. Yessiree bob, I am turning sixty. Hallelujah! And of course, there is Thanksgiving, a holiday fraught with meaning. I was born on Thanksgiving and my father Ollie died on Thanksgiving. And all those Thanksgivings in Marfa—an incredibly fond memory from the years I was married. Heavy, this holiday.

I suppose this all means that despite my disregard bordering on disdain for something like a month devoted to awareness, I will show up for November as well. Play my part. Represent.

Because those who can, should.

xo

The thin place and All Hallows Eve

When did it become so….tacky?

The Halloween of my youth was a rather simple affair. Carved pumpkins, homemade costumes, trick or treating in our neighborhood.

Now there are entire stores stocked with manufactured costumes and an endless variety of plastic decorations. Every time I step out my front door, I am cackled at by a dreadful motion activated witch compliments of the woman upstairs (who also happens to be my landlord, so no use complaining).

The neighborhood I live in, a place of century old homes and tidy yards, has been transformed as well. Fake tombstones, ratty strands of cobwebs, life size skeletons sitting on chairs, some dressed in actual clothing, others drinking a beer or holding an empty wine glass. Plastic, all of it. Including the styrofoam pumpkins–no carving necessary.

Halloween is big business now, with the National Retail Federation estimating that Americans will shell out $8.8 billion dollars on costumes, decorations and candy this year. Yes, I did say billion.

It’s a staggering statistic. Imagine all the good that could be done with that money were it devoted to–just saying–cancer research.

Kill joy, aren’t I. It is absolutely true that I err on the side of pragmatism. Also, as someone who is in that liminal place, I find the focus on the morbid rather fascinating. I suppose that making death into a joke of sorts can take away some of the sting. However, my relationship to dying is both more intimate and more respectful. Ghoulish decorations are a reminder that for most people, death is in the distance. Something to be dealt with later.

So anyway. Wouldn’t it be great if next year everyone agreed to make their own costume? Forgo the hideous decorations. Carve a real pumpkin. And donate all the money saved to something worthwhile. Something for the living. Like cancer research ­čÖé

xo

The goddess takes another gig

Alice called me two days ago to share the news that she would be leaving MGH at the end of November for a position at Novartis as VP, Global Head of Translational Clinical Oncology. 

My first thought was that I was grateful she was staying in the Boston area. And then my heart sank anyway. However Alice quickly assured me that she would retain one half day of clinic and so could still see patients. I was also concerned as to the impact on the clinical trial I am waiting for (it is a trial she has designed), but evidently that will still be a go.

Obviously this is something of a loss on a personal level, but I nonetheless greeted the news with overall enthusiasm. Alice will remain a champion of ALK+ and ROS1+ cancers and will be directing her energy in the lab to developing more treatment options. I am relieved that she will remain a clinician but I also believe that by focusing on discovery, Alice will use her formidable talents to the benefit of many more people.

Change is difficult and I know this was not an easy decision for Alice. I’m excited for her and incredibly proud of all she has accomplished. I also believe her experience in the clinic will translate to a sense of urgency in the lab–she will remain a fierce advocate for patients.

My dream team is going to get a remodel. I will miss the old look. But I also want Alice to be in a position where she can do more faster–to the benefit of the greater good. Alice wants that as well, which is why she is making this career move. So really, there’s just one thing to say.

You go girl.

xo

 

On being heard

In the comments following the previous blog my sweet friend Nancy expressed concern that perhaps the conference I just attended had been a waste of my precious time.

Nancy is correct about one thing–my time is very precious.

As for the conference, I was a panelist. However, my panel was the very last on the schedule. Those of you who attend conferences know that by the final slot, 30-50% of the attendees have slipped out the door, as most of them have flights to catch.

Somebody has to go last and I suppose it may as well be me. And there were patients scattered throughout other presentations. However, most of those patients had scant experience in clinical trials. You wouldn’t ask a podiatrist to serve on a panel specifically about cardiology, so why the more lax approach toward patient experts?

Sadly, I think this is because our position at these conferences is yet relatively token; that we are not actually recognized as experts.

I agreed to attend this conference as I viewed it as an opportunity to listen and learn. And I made absolutely sure that my (our) voice was heard, as there were ample opportunities to comment or ask questions.

Generally my viewpoint was rather contentious. The first time I went to the mic it was because a presenter was describing clinical trial participants as ‘heroes.’ I let him know how distasteful I found that word. Patronizing. Over the top in a ‘let’s just put ten gold stars at the top of the page’ sort of way. Trite, cheap, inaccurate. A wink, if you will. Even if it is well intended.

I didn’t choose this path, it chose me. And calling me a hero isn’t the sort of recognition I want. Give me something solid, like supportive services.

Another time a panel was addressing the issue of enrolling underrepresented populations in clinical trials. This is all good, I said. But make darn sure (see above) that you understand that clinical trials are time consuming, often require travel, and are more costly. That it’s important to make certain participation is sustainable. I was stopped by a gentleman later who asked if it was true that only drug was paid for in a clinical trial. In my case, yes.

And of course I expressed my frustration with the whole more is better data thing. I view the emphasis on returning data to patients as a bit of a smoke screen. ‘I am a data cow’ I said–my outlandish number of scans evidence.

I am undoubtedly the square peg at these meetings—but then again, I have been places that most will never go and I feel it is vitally important to share this experience. Gratifyingly, a number of people took me aside to thank me for speaking up and out. It felt good to have my viewpoint acknowledged.

Tomorrow I will be participating in another meeting, this one with the FDA. I think it could be interesting ­čśë

Couldn’t

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.

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,┬ásocial 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.

 

 

In gratitude

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So I’m about to tell you something that is either going to make you laugh or cry. Or not. Maybe you’ll just want to punch me in the face.

Sometimes I get really, really tired of being grateful.

Awful, isn’t it. I know how flipping lucky I am to be alive and most days, my gratitude is boundless. However, twelve years of being grateful for something most people take for granted (waking up in the morning) actually can get old.

As a cancer patient it is expected and accepted that you will feel all sorts of less than pretty emotions. Anger, sorrow, frustration, fear. Confusion. Depression. Bone deep weariness. All taken in stride.

But ingratitude?

The minute I start feeling anything resembling self pity I quickly self admonish. Because I am only too aware what the alternative is.

Those of us with terminal illnesses set the bar both impossibly high but also brutally low.

There is a self conciousness to life when every moment is fraught and at times I dearly miss the insouciance of before. As in, before cancer. The self awareness I have gained has been prompted by significant and persistent provocation. I am both wiser and sadder. And some mornings I’d just like to skip that part about being grateful.

Not because I’m not, but rather because there was something glorious about being so certain that something was due you that giving thanks never even crossed your mind.

I am beyond either innocence or assumption. And that’s ok. I have scans tomorrow, and an appointment with Dr. Shaw next Tuesday. The scans I could do without but the appointment with Dr. Shaw? There is no place I’d rather be. And yes, I will be feeling enormous gratitude.