I have been feeling rather blue. Deep blue. Indigo. A fatigue that is physical, emotional, spiritual.
Not surprising, I suppose. In sixteen days I will turn sixty. Remarkable, really. I never thought I’d have the opportunity to grow old. It is a milestone, in so very many ways.
It also means that I can now say, with complete accuracy, that I have been living with lung cancer for one quarter of my life.
That’s a long time. And obviously primarily a positive–surviving has always been my objective. But it’s also really sad.
If my life is a pie, then cancer represents an enormous slice.
Choosing to become an advocate has lent my diagnosis purpose. It has been an opportunity to make some good out of what can only be characterized as a personal tragedy.
But there is much that cancer has taken that I simply cannot reclaim/override.
Innocence–mine and my children’s–financial security, the bloom of youth.
And then the loving and losing. It is both the best and the worst part of advocacy. Relationships which transcend the ordinary. Incredibly special connections, each of which has enriched life to an almost unimaginable degree. Precious. Precarious. Often fleeting.
This–and my own mortality. Each new day exhilarating but also exhausting. Life so full of possibility but also portent.
Overwhelming. Odd, glorious, awful. But also all I’ve got. This is it. This is mine. My life.
Pay careful attention to the final sentence in the byline.
I have attempted to explain to people why my own expectations per another life extending drug are low to nil. With ALK+ patients comprising 4-6% of lung cancer patients, it was surprising that ALK inhibitors were ever considered a viable investment. I am exceedingly grateful that they were, and that second and third generation ALK inhibitors were also produced.
However, by the time you get to where I am at (1, 2, 3 exhausted), that 4-6% is a much smaller figure, due to the fact that even though survival stats for ALK+ patients have improved significantly (6.8 years median–I believe), overall mortality is still high. So now I, and other outliers, are essentially in the rare disease category. There is very little financial incentive to produce new therapies that benefit a handful of individuals. I have argued that clinical trials should not be seen primarily as science experiments nor as a way to enrich shareholder’s portfolios—rather they are social contracts. And as part of that social contract, outliers should not be left high and dry simply because we are now a poor investment. You don’t send soldiers to war and then just leave them on the front line with no way home.
And then there is this chilling line part way through the editorial: ‘For example, there are huge incentives to bring certain new cancer drugs to market, even when those drugs have little impact on survival rates.‘
They’re talking about us. And if you follow the link, it will lead you to a previous editorial with this paragraph: ‘Based on the data we do have, the thousand-plus cancer drugs now in clinical development are quite likely to help only a handful of patients, and only a very little bit: According to one recent study, targeted cancer therapies will benefit fewer than 2 percent of the cancer patients they’re aimed at. That reality is often lost on consumers, who are being fed a steady diet of winning anecdotes about miracle cures. Those stories are heartening, especially if you or someone you love is one of the people battling the long odds who could be helped. But they omit a lot, including the number of people who aren’t saved — or even helped — by a given drug, and the likelihood that any given success would have occurred even without the new medication.’
Viewpoints such as this are why I support Dr. Alice Shaw’s transition to industry, as she has an entirely different perspective owing to her years spent in clinic. She can instill that sense of urgency as well as a moral imperative: Alice will put patients first. Fingers crossed that she is successful in identifying innovative treatments and that she is able to help bring them from bench to bedside quickly.
I view my role as a canary in the coal mine. Those of you who are fortunate enough to be walking the same path–this is of great concern to you as well. We cannot afford to be complacent. It is not enough to simply support medical research, we need to make sure there is focus on long term solutions. It is a hell of a note to make it this far only to realize that your status as an outlier means your life is suddenly worth not more, but less. In the topsy turvy world of cancer, progress is a negative and rare, not a commodity at all.
As part of the fewer than the purported 2% to benefit from new cancer drugs, I want to let the world know that my continuing survival is not a trivial thing. That it means the world to me, my children, my family, my friends. To those who have benefitted from my participation in early clinical trials. Stakeholders and shareholders alike.
A good return on an investment, I should say. But in this society that is driven not by altruism but rather commerce, I have become a diminishing return.
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.
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 🙂
I am generally possessed of a mighty thick skin. Not a quality I was born with but rather one acquired through repeated injury. I don’t say this with any drama—it’s simply a fact. And I, being a scrappy survivor, have developed tools/personality traits to effectively protect myself.
However every once in a while something gets under my skin. When I logged onto Facebook this morning, another cancer survivor had characterized my cancer as ‘amazingly slow growing.’ I should have just let it go but I responded by saying that I wished my cancer did grow more slowly, before listing for her all the modalities of treatment that I have undergone since my diagnosis. And then I counseled her to be more sensitive when describing another’s cancer as amazingly slow growing.
For those who wonder what the fuss is all about, here is the synopsis from my most recent radiology report:
Surveillance for lung cancer status post left lower lobectomy. Sub-solid mass like opacities in the left upper lobe have increased in size and attenuation since the prior study as described.
Persistent and slightly increased groundglass and interlobular septal thickening in the basilar left lung, suggestive of lymphangitic carcinomatosis.
Additional subsolid nodules in the left lung are stable or slightly increased in size compared with the prior exam.
Slightly increased small loculated left pleural effusion.
Secondly, just for scale, the largest of my masses is now 4.4 by 2.1 centimeters. No small potato when one is talking about cancer.
So yes, I am darn fortunate that I have been able to survive for as long as I have. But I haven’t exactly been sitting around and eating bonbons as I’ve fought (yes, fought) rather tirelessly to stay alive.
There. Got that off my chest. Now if I could just get this other shit out of my chest I could get back to that box of candy.
So physically I am slowing down a bit and I can’t say I like it. It is difficult to feel your body failing and the fact that this isn’t my first rodeo doesn’t make it any easier.
Alice has been great about checking in even though she’s got oh so much on her plate (goddess goddess goddess). She called last night and we both agreed that at my next appointment on November 14 we will revisit the idea of adding chemo to lorlatinib. Now I’m not crazy about another go with platinum therapies—I’ve previously been treated with both carboplatin and cisplatin and neither was a picnic. Nor did either of them ever knock down my cancer, but as Alice reminded me, I remained stable while receiving chemotherapy. And stable would be a boon until that clinical trial opens up. We would both like to keep me breathing—literally, but also in the greater sense. So we’ll see where I’m at in a couple more weeks.
In the meantime, I remain extraordinarily busy. I just spent two days in New York City at a Patient Design Studio with the life science technology company Medidata. My friend and fellow cancer advocate Alicia Staley is heading up their effort to become truly more patient centric when designing products. As I said at the conclusion of the workshop, it felt as if we were being invited not only to have a seat at the table, but to help prepare the meal. And better yet, this workshop was not designed to be a one off–this shall be an ongoing relationship. Progress, my friends.
While In NYC, I posted some photos on instagram and my niece Riian, who I’d not seen in years (we became related through my first marriage), and who lives in NY, reached out to me. We went to dinner on my last night, compliments of my sister in law, her mom (thanks Steph!). So much fun. And by coincidence one of my favorite researcher/scientists, Lars Engstrom, flew into NYC from California with his ten year old daughter Tova the day before I departed. So after dinner with Riian, Lars and Tova took me to the top of the Empire State building. Incredible!
This coming week I have my second practice for TEDX (I’m giving a TED talk! November 23 in Boston). I am super excited but also nervous. Lots of memorizing and in front of a live audience as well.
And then my vintage clothing business, House of Redemption, is rising from the ashes. It will be reopening in Mill No 5 in Lowell. I have taken on two partners, Sean and Marianna, (adopted them, really). This is not a money making venture so much as a responsible way to deal with my rather vast collection. And it should be a ton of fun as well. Pictures once we are up and running!