Events Week for Lung Cancer Awareness Month

Misty Morning at Shelby Park

Today I met Monica Addington. Monica lost her father to lung cancer some years back, in the time before testing for genetic drivers, targeted therapies, and immunotherapies had become part of lung cancer diagnosis and treatment. She and her family and friends founded Lungevity's Nashville Breathe Deep Stache & Lash 5k/1.5 mile Run/Walk, and after several years of building the event, they passed the torch to the current organizing team, Erica Collins, Robert Pirtle, Tara Watson, and me. My organizing teammates, who have been involved with the race since its early days, also have each lost someone to lung cancer, and Robert, like me, is a cancer survivor.

After the race on this cold and foggy morning, I was invited to say a few words to the participants. I hope I did a good job expressing my gratitude to everyone there. I wanted them to know that it is because of them, because of their support and their hope, that I and Robert and other lung cancer patients have been the direct beneficiaries of lung cancer research.

The Lit Wits! My friends and colleagues from Vol State. They have supported me like family!

Erica and Tara

Robert and family.

Afterwards, Monica introduced herself to me. Both of us were pretty emotional as she told me how much it meant to her to see someone like me, someone like Robert, there at the event, people with advanced stage cancer who are living normal lives. And that's one of the amazing things about research now; it's moving more quickly at last, and therapies that were not available just a few years ago have since been developed and are having a huge impact. We still don't have a cure for all lung cancers, but we are moving toward one every day, with the help of all the donors, the walkers, the organizers, the sponsors, the foundation folks.

Monica, who lost her dad not so very long ago, and all the current organizers have worked to make hope a reality for people diagnosed with lung cancer. And those efforts are beginning to pay off as we finally see more progress being made. I say this over and over again – lung cancer kills more people in the U.S. than any other cancer, and yet lung cancer research receives only 6% of federal cancer research funding. So it is up to foundations like Lungevity and the Bonnie J. Addario Lung Cancer Foundation to make up the difference.

Addario Dinner

Addario Dinner

Today so many people: my family, my wonderful friends and work colleagues from Vol State, my new friends from Lungevity Erica, Tara, and Robert and their families, our donors and supporters and other walkers, and I put our energy into a Lungevity event. Early this week, we had an event for the Addario Foundation, a beautiful fundraising dinner and silent auction at Lyra, one of our most favorite restaurants in Nashville, owned by our lovely friends Chef Hrant Arakelian and his wife Liz. Hrant created a delicious, generous, multi-course menu for our party of eighteen. The Middle Eastern, Mediterranean dishes and the wine just kept on coming, and everyone could taste the love. We also had silent auction donations from family, friends, and local businesses. The proceeds from the dinner and silent auction will go to Addario's Global ROS1 Initiative. Once again we were supported by loved ones and friends from work and from the poetry and philanthropy communities. Thank you dear ones! Readers, if you are in Nashville, go eat at Lyra the next chance you have! You will love it!

All in all, it has been a week of community gatherings in the cause of lung cancer research. I stand in awe of the support everyone has shown us! John and I are both pretty exhausted, but happy to have been a part of making a contribution to the cause.

Menu from Addario Dinner

The Incredible Dangling Woman

A year ago you get a phone call confirming all the suspicions. Adenocarcinoma. Lung cancer. What? How? You don't even smoke! You spiral for a bit, round and down into some seething, dark emotional pit. You dangle there in the unknown, learning the hard way (your favorite way) how nothing is certain, nothing given. No matter how hard you try to google yourself to a Ph.D. in Stage IV lung cancer, no matter how many databases you ransack for the cure, the answer is only this: you will die from this disease, probably sooner rather than later.

One morning you wake up and can barely breathe, and you think, huh, guess it's gonna be sooner. But it's not. After emergency surgery to drain the cancerous, suffocating fluid from around your heart, you start actual treatment a whole month after diagnosis, a month spent waiting for genetic clues from three different biopsies to match you to the right thing. This treatment, a pill you take twice a day, is the only FDA-approved treatment for your type of cancer, which has a rare genetic driver; only 1-2% of lung cancer patients have it, typically non-smokers. For the first time in your life, you are in the 1%. Haha. You've won the cancer lottery. And it's miraculous, because there is something for it, not a cure, but a treatment that will keep the cancer from growing, hold it in check. The treatment makes you sick as hell at first, but after a few months, it's not so bad. And it works. For a few more months. Then it doesn't. 

The tumors that were shrinking are growing again and OMG! The cancer is in your brain now! And there you are, dangling over what's next. The radiation oncologist tells you that it's going to be sooner rather than later if you don't do something, like whole brain radiation. You read up on it, and you read the studies about how whole brain radiation doesn't always work for your type of cancer, how it damages the brain, and how the cancer just comes back anyway, almost right away sometimes. You'd be buying time, but what kind of time? So you decide to skip it, even if that means sooner rather than later. 

Instead, you keep scrolling on Clinicaltrials.gov, and you call your friend who has been in the exact same situation. She tells you to go see her famous doctor and get in her clinical trial in Boston. Friends and other fellow cancer patients tell you the same. You fly to Boston, get in the trial, start a new treatment, a breakthrough medicine. It's not a cure, but an inhibitor, like the first treatment, but better, more potent. It's amazing! After a few months you have no evidence of disease; you are NED! There is still cancer in your body, but only at the molecular level, and the medicine keeps it from making tumors. Isn't that brilliant? You have no tumors! For now. For a long while you hope. You are grateful, incredibly, profoundly grateful. To science, to the doctors, to the lab mice, to your family, to your friends, to all the other lung cancer patients in your on-line support group, to all those people who put your name on the breath of their prayers. Even if your brain is a little slower and your neuropathic fingers don't work so well, those people love you, and you are glad for the gift of time you've been given to hang out with them. You look forward to more holidays, more birthdays, more coffee and lunch dates, more hikes, more seasons, more books to read, more music to hear, more cake to eat. More. More. Please, sir, you want some more.

But you are still dangling. You are the incredible dangling woman, one of many incredible dangling women and men who have ROS1+ metastatic lung cancer. Or any kind of advanced stage, incurable cancer, really. Like all of them you are dangling over the cutting edge of cancer research, for it is truly the edge, and you can't quite see what air your toes are kicking in or what is below, but you know it's there, and you are doing fine, for now. You are not out of options. Yet. You are on the cusp of something, praying the science will outpace the disease, that you will not fall off the cutting edge before there is something else to catch you. But you read the blogs, and you're on Facebook, and you know people, now, "in the cancer community", and you read all the posts from the ones who are doing fine. Then they aren't. Then a loved one posts the news instead, and it isn't good. In any other semantic universe, the word "progression" would be a good thing, some musical chords shifting, your game pieces moving across a board. But when it's in Cancerlandese, as in "progression of disease", well, will it be sooner or later?

And you have lived now a year and a day knowing what disease you have, knowing that you have beat some odds. You don't know what it means. You don't know what anything means except that you have made it, panting, to this edge. And it is rimmed with love, all those people reaching to hold you there, to pull you up. They go with you to scans, endless appointments, and hear the news, good or bad, with you. They send you tiny, funny letters in the mail, drive four hours across two states in the rain to see you in your basement studio digs in Brookline. They send you money and airline tickets and good wishes and thoughtful gifts, take trains to you through the darkness to meet you early, early. They sleep on awful cots in the hospital to be next to you, fetch you real food instead of that hospital swill, and keep everyone in the loop. They wake up every day beside you, make you coffee or tea, listen to you fret, soothe you, take you out to a show, a nice dinner. They make you eat kale (or drink it in beet smoothies). They restore you with yoga. They help you collect and organize your many medical records and hook you up with a saint-to-be for intercession. They ask all their friends what to do for you, offer cannabis and cleanses, and company. They raise funds for research and pick up your slack at work, text you with poems and prayers and blessings, with in-jokes and irony. They read your shitty, whining blog posts and like your pictures on Instagram. They let you be cancer girl, or not, whichever suits you. They lift you up in prayer. They are tender and strong, and you are puny and amazed in the light of such kindness,  such grace, such mercy. They are there with you, at the edge, not letting go, all of you crying more, all of us every day crying please, sir, I want some more!

He Used the C Word

This weekend I attended a regional lung cancer patient summit sponsored by the Lungevity Foundation in Columbus, Ohio. I got to meet other people with lung cancer, as well as care- givers, researchers, and advocates. Many of the lung cancer patients had metastatic disease (like me) and were multi-year survivors, so it was reassuring to meet other folks on targeted therapies and immunotherapies who are doing well.

We got to hear an inspiring keynote talk from Dr. David Carbone, who is director of The James Cancer Hospital Thoracic Oncology Center at The Ohio State University, and who used to work in here in Nashville at Vanderbilt. Dr. Carbone had good news for us, but first, he gave us a little historical background, most of which I already knew. Back in the bad old days, in the 1990s, when he first began treating lung cancer patients, there wasn't much to offer by way of treatment to those with metastatic disease. Patients with late-stage lung cancer usually died within a few months of diagnosis. But, things have really changed for the better, and with new treatments, many of us with metastatic disease are living years (not necessarily lots and lots of years, but at least we're using a plural form) instead of months. Folks in attendance were living proof of that! Dr. Carbone also said that he'd seen patients with advanced disease have complete responses to treatment, especially immunotherapy, and they are seeing durable responses beyond the five-year survival mark, even after the treatment has stopped. So....Dr. Carbone said that it might even be possible to talk about some of these patients as being cured of metastatic disease. Uh huh. He used the "C" word. Not for a lot of patients. Just a few. But cured. Of what had previously been an incurable metastatic disease. So that was good to hear.

As a rule, oncologists are trained to say to patients with metastatic lung cancer "you have an incurable cancer, but it is treatable." They no longer use the word "terminal." We are told that "each person's cancer is different", and the hope is our disease can be managed as a chronic illness, that we'll move from treatment to treatment  for as long as we can, until we run out of options. And for the most part, that is still true. And for the most part, we still risk running out of options, especially those of us who are on "breakthrough" and "cutting edge" therapies. That's the thing about cutting edge; it means you're on the edge.

The genetics of lung cancer are more complicated than they are for some other cancers; there are different types of lung cancer, and over 300 possible genetic drivers for most lung cancers. Plus with targeted therapies, new mutations develop resistance to treatment, so it's kind of like a crazy game of wack-a-mole trying to keep the disease pinned down.

But Dr. Carbone's optimism was contagious. I hope a cure for lung cancer will be too.

I Have These Conversations

Every once in awhile I find myself in a conversation about cancer with someone who, upon learning my diagnosis, holds forth on the elaborate big pharma conspiracy to hide the cure for cancer so that we'll all have to keep paying for expensive treatments that only make us sicker. I'm told, for instance, that studies on intravenous use of Vitamin C to cure cancer have been suppressed (they haven't been; I've read them) because they prove that this simple technique cures cancer (it doesn't) and would put big pharma out of business (it won't). Oh, and it's not just big pharma, I'm told, that is part of the conspiracy to keep the cure away from patsies like us desperate cancer patients who show up for clinical trials, scans, chemo, radiation, targeted treatments, immuno-therapies, and surgeries. In fact, as my would-be enlightener will point out, the entire medical establishment aims at keeping us all sick unto death for the sake of profit.

And I get it. Greed is ever-present, and no industry chugging along in a capitalist culture is immune from tendencies toward profiteering. (Which is why, by the way, we might want to give more scrutiny to the fact that we encourage for-profit models in areas like health care, elder care, day care, education, and other efforts on behalf of the greater good, but that is another argument for another day.) Yes, there have been plenty of scandals involving the pharmaceutical industry, and yes, many hospitals, clinics, and ERs are full of repeat customers because treatments have poor outcomes due to myriad failures in the way we, as a culture, practice medicine and view wellness. Bureaucracy, over-regulation, under-regulation, terrible communication, and outright incompetence seem to prevail and offer us good reasons to distrust the health care industry. The inequities built into our health care system alone make it a scandal, and ethical questions about clinical trials and treatment development abound.

But working both inside and outside that entirely dysfuntional machine are some pretty dedicated cancer researchers who, if they could find a panacea for all cancer, would gladly wash out their petri dishes and turn their time and talents to other useful things. So here's what I have to say to the tipsy party guest who regaled me with his cancer-cure conspiracy theories a few nights ago. Read the actual medical literature. Go to a few cancer conferences like those sponsored by ASCO  or to patient summits like those offered by The Lungevity Foundation. Talk to some researchers. Talk to more patients like me who participate in clinical trials. See what research projects non-profit foundations are funding. Visit a patient advocacy site like The ROS1ders. Cruise the listings on ClinicalTrials.gov hoping for a miracle cure. Learn that "cancer" isn't one thing, that its cure will never be found in one silver bullet or in prevention-only strategies, but rather in each data point collected, each pattern detected, each genetic code cracked.  Cancer research is a molecular, genetics, big data long game now. And if you, dear reader, know someone spouting ill-informed notions about the Great Cancer Cure Conspiracy, suggest that what that person is doing, rather than enlightening anyone, is diminishing the existing and ongoing research that really is curing cancer, one clinical trial and one patient at a time.

Eighteen or One Hundred?

I know a hundred people, at least. Well actually I know a lot more than a hundred people, but for the sake of argument I'm going to stick with that number.  And by "know",  I don't mean "know well". I mean these are just a hundred people who are sort of in my regular orbit, some of whom I know well, others, not so well. I'm guessing, too, that maybe most of us know at least a hundred people – friends, family members, people from work or school or yoga class, the regulars at the coffee shop, a favorite barista, a hairstylist or barber, the waitress at the breakfast joint who calls you baby. Okay, let's count some of the social media friends; we just like each other's posts, and somehow, these people in cyberspace have become part of that crowd of one hundred.

So think about those hundred people. And now, imagine (God forbid!) that they have all been diagnosed with lung cancer. And fast forward five years. Only eighteen of them (statistically speaking) will be alive. 

That's right. According to the most recent statistics, only 18% of people diagnosed with lung cancer live longer than five years. And that's an improvement over a number which hasn't changed much in a few decades.

I was pretty shocked when I read that number. And the statistics are even worse for someone like me, diagnosed in a late metastatic stage, which also happens to be the most common stage for diagnosis. Why is the survival rate so low? There are a number of reasons. We don't routinely screen for lung cancer in the way we do for other cancers to detect and treat it early; we don't fund lung cancer research at the levels that we fund research into other types of cancer; lung cancer symptoms rarely present in an early stage, so by the time they are diagnosed, many lung cancer patients already have incurable metastatic disease. Likely the overarching reason for all of these issues is that lung cancer is still a highly stigmatized disease due to the mistaken belief that only those with the poor health practice of cigarette smoking will get it.

Last year at this time I did not have the ability to recite lung cancer statistics off the top of my head, nor did I ever think that I'd be included in those statistics. I know too many lung cancer numbers, and make myself obnoxious at dinner parties reciting them.  But, I refuse to accept the grim prognosis those numbers tell. The pace of research is picking up, sustained by a number of organizations like The Bonnie J. Addario Lung Cancer Foundation  and Lungevity,  which are focused on ending lung cancer. I think our chances are improving all the time. In fact, I'd like to think that when I celebrate my five-year Cancerversary, I'll know at least a hundred other people with lung cancer who are celebrating theirs.

Hello, I'm NED!

Today's foot attire.

That's right friends! Ten months after being diagnosed with Stage IV metastatic lung cancer, nine months after having emergency heart surgery for a pericardial effusion caused by the cancer, and four months after being told I would need whole brain radiation to treat multiple tumors in my noggin, my most recent scans show NO EVIDENCE OF DISEASE. I have had a COMPLETE RESPONSE to LORLATINIB, a drug I have accessed through a clinical trial with Dr. Alice Shaw at Massachusetts General Hospital. So I'm not going to die of lung cancer any time soon. In fact, if I have a durable response (i.e. one that lasts years), something else might even get me first! In the meantime, I'm going to walk around alive and well and incredibly grateful for good science, a loving family, amazing friends, and all those who have put my name in their prayers, including some folks  I've never even met. All those things together have wrought this miracle, and I bow before them.

Even though it's a horrible thing to have cancer, and even though I had an awful setback in treatment in May, and even though I'll likely be having to treat this disease for the rest of my life, so many other things have gone right that I feel incredibly fortunate most of the time. Through a happy chain of events, I found myself in touch with the right people who had the right information at the right time to help me get access to this trial. I had the indispensable help of the ROS1ders, especially Patty, who was the first person with lung cancer to tell me I could survive it, and who is always just a phone call away. And in the couple of days back in May when I was having to make hard decisions about treatment, two of my best friends, Claudia and Rebel, swooped in to cheer me on. They urged me to pursue the trial and helped me gather and send off all the clinical records I needed to be considered for it, which involved some serious running around to multiple clinics in midtown Nashville on a hot day. It's great having your own personal cheering squad when you're terrified. Once I got to Boston, my sister Michele and two of my nieces met me and my husband John there, schlepping over on a long drive from New York after just having a long trip home from visiting me in Nashville! Another cheering squad to the rescue as John and I waited to learn if I could get in the trial. I did qualify, and that has meant monthly trips from Nashville to Boston, so again, I have been fortunate to have the resources and to have been given some generous gifts to fund my travel to Boston to follow the protocol. Not all cancer patients who could benefit from trials can get access because the sites are often far away and the cost of travel prohibitive.

So, science yes, but grace too.

And unconditional love and support from my husband John and stepdaughter Rachel for my decisions. Their good spirits, patience, generosity, and love have sustained me. Being a caregiver to someone with cancer is never easy, especially when that someone is ornery me.

What does all this mean for my prognosis? Well, I still actually have cancer. But now, we're treating it more like a chronic illness instead of a soon-to-be fatal one. Those of us in the lung cancer community know, though, that things can turn ugly quite suddenly, and no matter what the treatment plan is, we're always thinking about what could happen with the next set of scans. I'll keep taking lorlatinib for as long as it keeps the cancer pinned to the mat. If the disease gets a second wind and rises up, well, it just so happens I have a hook-up with a rock star cancer researcher in Boston who studies the disease's mechanisms of resistance to treatment, and she will, by then, have discovered more about what to do next. Those discoveries will benefit not just me, but so many others who have lung and other cancers that need to be treated at the molecular level. That, my friends, is why we have to keep pushing to make more funding available for lung cancer research. And one of these days, I'll quit pestering you for donations, because all those dollars you'll have contributed will have added up to a cure!

The Money Thermometer

I wanted to write some sort of witty post that would make readers laugh and set everyone at ease so I could ask you all for money. (I promise it's not for me. Well actually it is, sort of, but I'll get to that.) Anyway, as I tried to write that witty, magic, purse-and-wallet-opening post, every pathology I've ever developed from my semi-abusive, co-dependent relationship with capitalism and the free-market economy came crashing down on my psyche, and all I could think about was the money thermometer. You know, those thermometer illustrations non-profit organizations use to show how their fund drives are going?  Well, I started imagining what one would look like showing off my fundraising efforts for lung cancer research, and it was kind of embarrassing.

Oh, you didn't know I was raising money for lung cancer research? Hmmm, that might explain why my imaginary money thermometer is recording sub-zero temperatures.

So I guess I'd better get on it, right? I know, I know...so many worthy causes out there! How does one choose? For me, this year, the choice was easy and obvious. In fact, it wasn't even a choice; it was a directive.

I am a direct beneficiary of on-going lung cancer research. In May of 2018, I learned my first-line, standard-of-care treatment failed, and the lung cancer that had been kept in check by crizotinib had mutated, gotten loose, and had metastasized to my brain.  Thankfully, I was fortunate enough to enter a clinical trial for a breakthrough targeted therapy that has gotten the metastatic disease under control. In May, I didn't know if I would live through the summer. This week, I gratefully went back to my teaching job. While the doctors don't know exactly how long this new treatment will keep the cancer in check (average progression-free-survival on lorlatinib is around 20 months), and we don't know yet what my next line of treatment will be, I remain optimistic that, with the help of continued research funding, the science will outpace the disease. (Fingers and toes crossed and prayers for clean September scans please!) I'm lucky. There is actually more than one line of treatment for my type of lung cancer. Many other lung cancer patients have even more limited options than I do!*

As I've noted here before, lung cancer is one of the most deadly cancers, one of the most stigmatized, and, as a result, one of the least funded in terms of research. Science has made some amazing advances in treatment in the last decade with new immunotherapies and targeted therapies, but more people are still dying from lung cancer than they are from breast, colorectal, and prostate cancers combined. Did you know that breast cancer has a 90% five-year survival rate? That's due to substantial early detection practices and decades of generous and reliable research funding. The five-year survival rate for lung cancer is 18% if detected early. See more interesting statistics here: Lung Cancer Facts.

So if you didn't know it before, you know it now. I'm raising money for lung cancer research. As long as I live or until there is a cure, I will be raising money for lung cancer research. I'll try not to be too obnoxious about it. But I'm going to ask. And ask. And ask. And if you don't feel you can help this time, that's totally okay. I'll ask again. And again. There will be ample opportunity. And when the spirit moves you at last, you can help by donating to one of the projects listed here: Giving to Research. I don't have any material incentive to offer, other than the tax breaks my particular pet projects bring you. There's no swag. No one will say your name on the radio or TV. But you'll know what you did. And what you did, it's real good, my friend, real good! You don't need a money thermometer to tell you that.

*In memory of my classmate, Renee Nasby Baker, who lost her life to lung cancer.