Tag Archives: lung cancer

Gut punched. But not down and not out.

Cancer, you’re an asshole.

Another taken. Too young, so loved–a zillion friends, her husband, three children and an extended family left grieving. A punch in the heart to the entire community.

Goddamn, it’s hard. So hard. But no one said this would be easy.

Given some of the responses to yesterday’s blog, I wish to clarify. If I decide to drop out of a trial, it is simply a change in strategy. I know some of you don’t like battle metaphors, but this is war. However, take the word losing out of the equation. Not loss, the personal and collective loss remains huge. And never ending. But no one loses their individual battle with cancer.

It’s more like a draw. When we die, so do any malignant cells. In the meantime, we fight. For ourselves, but also each other.

And we get sad. At times incredibly weary. Angry–always. Those who have passed are carried forward in our hearts. As a comfort. But also a hurt.

Life is beautiful, but it can confound. Hurt and anger? They compel. Those of us who can, will.

Fight on.

Joy joy joy joy joy

It’s amazing what ecstasy a simple vaccine can bring.

After a year of hiding in my cave I am now able to visualize that moment when I can carefully climb back out again. In fact I have the exact date circled in my calendar. March 20th, two weeks after my second shot. At that point my anxiety can go down so many notches and better yet, I shall be able to spend time in the company of a select few (those who are also two weeks or more out from their second vaccination). People!

After such extreme deprivation (remember, I am an extrovert), this feels like an utter banquet. A wealth, if you will.

Yesterday someone complimented me (via zoom meeting) on my hair cut. Later I realized that if I had been clever, I would have responded that it was not a hair cut, it was a hair grow. Same with my eyebrows. They delight me. I simply cannot stop touching them. And two days ago, one of my eyelashes bumped into the rim of a water glass.

I was alopecic (hairless) for one straight year this time. Got old, it did. Of course my newly boosted self esteem (I like hair) is challenged by the pustular acne and eczema that are secondary to treatment with binimetinib. I never go halfway when it comes to side effects. Fortunately, my team takes these every bit as seriously as I do, and has worked with me to find solutions. As long as insurance doesn’t keep me from filling my prescription for minocycline again, I should be able to get this under control.

Soon I shall be almost as pretty as I once was. That’s a joke. Ode to my brother in law Greg, who will say to my sister Bink, ‘You’re as pretty as you’ll ever be.’ Also a joke. Which reminds me of how my father Ollie once told me that peak intelligence was reached around age eleven. This was erroneous but I was highly anxious. And twelve. So of course I worried.

Anyway, I digress. Happily. After a trying year my life feels a comparative splendor. And about that trying year. I have been doing a lot of middle of the night thinking (insomnia), and recently I was pondering the concept of practice. Both in the Buddhist sense but also totally pragmatic (which Buddhism, after all, really is). Repetition is the essence of practice. If you do something again and again (good and bad habits), it shall manifest.

This past year represented a lot of hard work–emotionally. At times it sucked but, as my son August’s colleague so pithily implored him–’embrace the suck.’ August does. I have. And we’ve both grown.

Now it’s time to bloom.


Upstage Lung Cancer

My friend Hildy Grossman, a lung cancer survivor as well as a talented vocalist, founded an organization called Upstage Lung Cancer. Her dedicated cast performs annually and the proceeds go to lung cancer research.

In addition, every year someone receives the Fan Award and I am honored to share that this year that someone is me.

As the concert must now be virtual, it is also free (although please consider a donation to this great cause). Tonight’s the night. Register here, pour yourself a glass of wine, and sit back and enjoy.



Lungs are having a moment.

Yup. One fundamentally underappreciated organ. Not as romantic or picturesque as a heart. Not as hungry as as a stomach. Not as smart as a brain.

Lungs are one of those things we absolutely take for granted. Just breathe, y’all.

Except, it’s not that simple. Knee on the neck, stupid COVID, fucking fires.

Those boggy pieces of flesh are actually absolutely essential to our ongoing existence. You can go without food for 30-40 days. Water, three to four. Brain dead, well, with other life supports, for years. Heartbeat, 20 minutes. Breath? Three to six minutes before you suffer irreversible brain damage.

Our lungs are, unquestionably, one of our most essential organs. Arguably unattractive (I’ve held a resected lung in a lab) but oh so beautiful as far as function.

I would like to posit that 2020 is the year of the lung. Police brutality, a global pandemic, and the West Coast up in smoke.

We should not, cannot, ignore the organ that is in charge of respiration. Those of us with lung cancer understand this. Not just understand, our very existence is often predicated upon drawing a breath.

Of all our organs, it is our lungs that interface with and are most sensitive to our immediate environment. Therefore, logically, we should love our lungs.

And yet, even though lung cancer takes more lives than any other cancer annually, it is also the most underfunded when it comes to medical research.

Why? Is it the outdated stigma that only associates lung cancer with smoking? There is no question that smoking damages lung tissue, an established risk factor for lung cancer. However, it is the inflammation secondary to inhalation of smoke that is key. IE: damage to lung tissue. Viruses that attack the lungs (COVID) and wildfires can cause the same sort of damage.

Our lungs are the canary in the coal mine. And they should never, ever, be taken for granted. Just as our heart can’t stop beating, our lungs can’t stop breathing. And they are not discriminate. Whatever particulate is in our immediate environment will be inhaled.

Essentially, anyone who breathes is at risk for lung cancer. That is each and everyone of us.

2020 should be the year that we all stop taking the next breath as a given.

Love your lungs. Your very life depends upon it.

Oh joy

Kumo and I took a drive into Boston today for a masked meet-up with two out of my three kids. We traipsed around Cambridge looking for a restaurant that was open for takeout and made it to a splendid BBQ place just as a downpour began. Fortunately they had a tented area for outdoor seating, were dog friendly, and we had the patio to ourselves.

Lunch was fantastic (pulled pork sanny with smashed potato salad and Angels & Cowboys Rose—yum!) and the company, top of the line.

Damn I’ve missed my family. Seeing each other entails some risk (the table wasn’t six feet across) but in this ongoing pandemic, we have to make some calculated calls. And spending time with my kids is something I am willing to go out on a limb for.

Until next time!


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.


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 🙂


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.



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 😉


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

Screen Shot 2017-08-02 at 2.00.19 PM

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.