A day set aside to celebrate our good fortune at belonging–to humanity and on a smaller scale, to a group of friends or better yet, a family.
However, if you’re estranged from family, have lost someone you love, or are just plain alone–holidays are a very different thing.
Salt to the wound.
Take Thanksgiving. I was born on Thanksgiving and for most of my life, it was my favorite holiday. Four months after my own diagnosis with lung cancer, my father Ollie was told he had pancreatic cancer. Almost four months to the day later he died, on Thanksgiving Day.
For years my family celebrated Thanksgiving in Marfa, Texas, where we owned a second home. Ten years ago I turned 50 there–on Thanksgiving. It was a flipping big deal because the summer before I had been told I had three to five months left to live. And here I was, the big Five Oh.
But the past six years have been entirely different. Mere months after I left my marriage, I lost my mother Evalynn as well. I became a de facto orphan and my own family unit–the one I helped create–had also been torn asunder.
When it comes to holidays, my children are more likely to spend time with my ex-husband. He lives closer to Boston, in a real house, and he prepares both a formidable Thanksgiving Turkey and a killer Christmas Ham. I get it.
And yet I don’t. I was the mom who went all out at Holidays. Not decorations (I am the anti-Martha Stewart) but rather details. My son August believed in not just Santa Claus, but also the Easter bunny, leprechaun, and tooth fairy. Fervently.
This year I was fortunate to spend Thanksgiving (and my birthday) with good friends. It was wonderful. My friends always come through.
But I missed my family. Terribly. And yesterday was a reminder not only of what I should be thankful for, but of what I have lost.
The first thing I said when I got up this morning was ‘Linnea, it’s your birthday. You’re still alive. Not sure how you do it, but you do.’
Gotta say, I didn’t think I was going to have an opportunity to get old. And so far, I’m loving it.
However it is all very bittersweet. Yesterday I spent time with someone who I care very much for. Someone who is young–too young–and who is in the last stages of fighting this disease.
And that breaks my flipping heart.
We’ve made significant progress when it comes to the treatment of lung cancer. More of us are living longer. However, the majority of effective treatments are still targeted therapies that are classified as inhibitors. By definition, inhibition restrains or restricts. When you are talking about targeted therapies, inhibition is almost always temporary. Cancer is an incredibly wily bitch; it finds a way around.
And sadly, medical research doesn’t operate at quite the same speed as wildly mutating cells.
It’s all quite complicated, actually. Regulations, incentives, the sheer enormity of the problem. However, from the perspective of the patient, it is actually absolutely straight forward. We want to live. And far too many of us are still dying.
So yes, I am happy to have this opportunity to turn sixty. It is a reminder of far we have come. But also how far we have to go.
I’m not talking about cancer; I’m talking about life. The stuff I don’t usually share here, in a blog.
However I’m going to give you a little window. Yesterday I paid a visit to a dear friend who just got out of almost two weeks of intensive care. She is yet in hospital, but out of crisis. Sort of. Cancer is always a crisis.
Her husband has been by her side throughout this ordeal. His love for and dedication to his partner are a joy to behold.
When I got to her room in Lunder yesterday she was drinking a big assed root beer float, not typical hospital faire. Her husband sourced that root beer float himself, assembling ingredients from Whole Foods and CVS.
The last time I went through chemotherapy I was still married. My husband drove me to chemo essentially because a close friend told him he had no other choice.
My side effects after the first session were so severe, it was thought I might have an allergy to carboplatin. I was tested but the results were negative. However, at the next round my dose was titrated, just in case. And a crash cart was at the ready.
As infusion began, my husband stood and said he was going to get some lunch. I asked him if he would bring me back a coffee from Starbucks. His response was ‘I might and I might not.’ And he didn’t.
In retrospect, we had a bit of The War of the Roses going on. But I was vulnerable and seemingly dependent upon this person, my partner. And I thought chemotherapy was sufficient cause for a truce.
Because I was married, friends and family were under the impression that my needs were covered. In truth, it is far better to be alone and to understand fully who I can count on. Me. Myself. I.
I had an oncology appointment in Boston today and met one of the new members of my team. Alice will remain my oncologist, but her role will necessarily be more limited than before. I told this new doctor that I felt my cancer was now in my right lung as well–I can both feel and hear it (wheezing/crackling). She took a listen with the stethoscope and confirmed.
So those horses are not only out of the barn–they are moving to another pasture.
Obviously that’s not a good thing. It’s a damn shame that lungs are an essential organ, but it is what it is. And what it is, is that it’s getting harder to breathe.
Time to spring into action. Given the fact that I have some upcoming big plans (a panel at Takeda, my TED talk, birthday, Thanksgiving) we are holding off until December. Scans on the 2nd, first infusion on the 5th.
Originally the plan was to add carboplatin and avastin to lorlatinib. However I have already had four rounds of carbo as well as four rounds of cisplatin. A lot of platinum for one girl. My peripheral neuropathy is rather severe, particularly in my feet. On various occasions I have walked around unaware that I had cardboard liners, stones, or wet socks in my shoes. The bottom of my feet are almost totally numb, and although I have adapted to this unsettling scenario (only an occasional stumble) we certainly don’t want it to get worse.
So Alice felt carbo was not the best bet, and that perhaps we should go with pemetrexed instead. We were going to add avastin, in the hope of hitting the cancer with a bigger hammer. However, I have been coughing up some blood and also have had small abrasions become larger wounds that were loathe to heal–both indicators that I might be at greater risk for bleeding in my lungs secondary to avastin.
There is a distinct possibility (and a big, big hope) that chemotherapy will have a synergistic effect with both lorlatinib and binimetinib–the drug I would receive in conjunction with lorlatinib in the next clinical trial I shall enroll in. Given that, I want to make certain our approach is not tepid. As avastin has been ruled out, I asked that carbo be added back in–but at a lower dose. If I tolerate the first round, we will continue. If not, then it will simply be pemetrexed.
I had a vitamin B12 shot today and will begin taking folic acid in preparation for infusion. I am ready but also understandably leery. This will be the first time that I have undergone chemo while living alone. That in itself should be a bit of an adventure. However, I think I know what to expect.
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.
Alright y’all. November 23rd. WGBH studios. I am in the education block–morning session. Tickets are on sale here now. Be *there or be square. And if you can’t come, help us make it go viral later.
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.Â
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.Â
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.Â
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.
life and breath: outliving lung cancer 