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.

Resilience and a Good Report

This week I began my fourth cycle of lorlatinib, the targeted therapy that has chased off cancer metastases in my brain and resolved all the tumors in my lungs. As I get myself around Boston on the T like a pro now, it hardly seems like three months have passed since I showed up at Yawkey Cancer Center Suite 7B to enter Dr. Alice Shaw's clinical trial. But as I made my way from the Red Line stop across the now-familiar intersection and into Mass General for my clinic visit, I realized how oddly normal, even routine it has become to be doing that very thing. Despite this routine familiarity, I remain mindful of the fact that what I am getting to do here in Boston is remarkable. This research study in which I am fortunate enough to participate is moving cancer treatment forward in important ways and is fueling a paradigm shift that will, I am certain, lead to better treatments, and eventually more cures for more kinds of cancers, and very soon.

This last visit made me aware, too, of how resilient the body can be. When I began taking this drug, my liver enzyme count sky-rocketed, so much so that I had to get blood drawn every two weeks to monitor the response to the new drug. I am happy to report that my liver has recovered from its initial lorlatinib shock and is performing nicely again. And so, wine and bourbon (in small amounts) are back on the menu, yay! The brain fog has lifted as well; I still have some memory issues and word finding issues, and multitasking is super hard, but my thinking doesn't feel as...gooey. The annoying neuropathy in my hands continues, though it is not as severe. Less happily, flying to Boston exacerbated the edema in my legs, so now I have an unfortunate case of cankles.

The nicest part of this last trip (I mean besides getting my hands on more of that life-saving medicine) was the company! I got to spend a few days with my brilliant and beautiful pal Rebel, who lives up to her name in more delightful

Rebel being fabulous in the elevator.

ways than I can even say. She is an expert on many things (the career of actress Betty Buckley, for example) and is especially gifted at pointing out which movie stars people on the train resemble. Rebel is also the best director of cell phone selfies I know. Plus she keeps my emotional shit together, insists I floss, and makes sure I stay hydrated. I'm grateful to travel under her supervision.

This coming week I'll return to work, preparing to teach a full load of classes and doing some advising, then beginning classes on the 27th. Back in May, when I learned Xalkori had failed and I had mets in my brain, I just stopped thinking about school. I'd already decided to forgo summer teaching, for the first time in my entire career, in order to spend my summer visiting family and friends, so with the new diagnosis, that time became paramount. And when I started lorlatinib and felt like my brain was churning through cold molasses, I started seriously looking at retirement; I was pretty certain I couldn't go back to school if I couldn't remember a conversation from five minutes ago or find the words I was looking for to express a simple idea. And though I'm not feeling like my brain function is 100 percent, it's a good bit better, and I have been persuaded to make a new attempt at "normalcy" and return to work. So, that's the plan. I only need to get my neuropathic hands working a little better in the morning, or just give up buttoned shirts in favor of pullovers.

I've got scans coming up in early September, so I'm hoping the lorlatinib is still holding the cancer in check and that the plan will still roll. It's been an amazing summer, full of blessings. I stand full of gratitude and optimism on the cusp of a new season to come.

Durability

In July I received the spectacular news that I have had a "nearly complete response" to lorlatinib, a new cancer medication (so new it's still in clinical trials) that I began taking in late May. Not only was the response nearly complete; it was fast!  All tumors in my lungs and lymph nodes are gone, and all fuckles but one tiny speck in my brain have disappeared as well. So, everyone, family, friends, medical team, especially me, was/is happy and grateful. Because I have stage iv disease, which means the cancer is still hanging out in my body and can become resistant to lorlatinib at any time, we can't call me "cured," and we will have to continue "surveillance" (MRI and CT scans every three months) so that if cancer shows up again (which it likely will, stage iv disease and all), we can pounce on it with another treatment. This is what we mean by stage iv cancer becoming a "managed" disease rather than a fatal one.

Another word we get to use a lot now is "durable," as in "We hope this will be a 'durable' response to treatment." Until I got sick with cancer, I never used the word "durable" in relation to health. Certain kinds of upholstery fabric maybe, or Amish barns are durable, but a response to medical treatment...well, either you are cured or you aren't, right?  Definitely not in Cancerland (and other lands too)  – welcome to another one of cancer's vocabulary lessons. A "durable" response to treatment in Cancerland is one year or more of DFS or PFS (disease-free or progression-free survival). Oh, and a side note here. Isn't it weird that cancer "progresses", that we have "disease progression"? I'd hardly call the spread of cancer progress.

Opus 40 Environmental Sculpture, Saugerties NY

Anyway, in mulling over this idea of "durable" response to treatment, I consider what is designed to endure, what we want to last. 1) Big things we build – monuments, roads, houses, barns, libraries. 2) Things we buy – cars, shoes, backpacks, refrigerators. 3) Things we make – sculptures, gardens, poems, promises. All designed to last.

They don't, of course. Well, some things last more than others. Art. Art lasts. For awhile. (As an artist, I'm required to say that.) But libraries are sacked and burned at the fall of empire; roads and buildings crumble; cars go to the junk heap, gardens get gated, and so on. And then there's climate change, nuclear proliferation, superviruses, and the demise of the Oxford comma to worry about. It would seem, then, as a race, our prospects need improving.

Old Pick-up Truck Used for Target Practice

And yet. Mountains. Wide rivers. 

Catskill Mountains, Delaware County NY

Hudson River from The Walkway Over the Hudson

Dingle Hill Daisies

The great and certain circle of seasons.

And, perpetually, hope – that little boat we keep rowing.

We can't not. It's how we're made.

And that's what I call a durable response.

Saugerties Lighthouse

Having a Moment Here (and Now)

The god of dirt
came up to me many times and said
so many wise and delectable things, I lay
on the grass listening
to his dog voice,
crow voice
frog voice; now,
he said, and now,
and never once mentioned forever
                      --Mary Oliver

I turned thirty years old standing on a bridge in Yoyogi Park in Tokyo. It was a Sunday, and on the concourse below, bands were playing, lots of them. Rock-a-Billy. Punk. Metal. Thrash. 60's Covers. You name it. There were at least 30 bands jamming away. All at once. Each with varying degree of expertise and talent, all with much enthusiasm. And people were dancing, or at least moving their bodies in interesting ways, with fans of particular bands dressed in the same style as their pals on stage (punk-a-billy was by far the most popular ). This exuberant display of organized rebellion happened every Sunday, the guidebooks said. Young Tokyo-ites would pile all their gear -- guitars, drums, generators – onto the subway, emerge at Harajuku Station, and set up one band right next to or across from another, creating a corridor of sound at this particular spot in Yoyogi Koen. It. Was. Amazing. And really, really loud, so loud the cherry blossoms shook. Well, maybe that was wind, but still, loud.

I was pleasantly surprised to be suddenly thirty and living in such a country, where I happened to be teaching English to rich housewives and corporate executives. It's not that thirty was a big deal; it wasn't. I hadn't accomplished anything in my life at that point, really, and was sort of hiding out in Japan from embarrassment. I didn't own a house, had no kids, no spouse (are those accomplishments? hmmm), no prospects, and no clue what I was doing. I'd squandered my twenties on pub crawls and college with not much to show for it. But I remember that moment on the bridge as one in which I was particularly glad to be alive, and walking through that crazy, joyful corridor-o-sound that day had made me even more glad.

With thirty a long way behind me now, I still feel that way about my life,
glad and grateful to be in it, moment to moment. And I feel that way especially when I go out to hear live music with my family, something I get to do a lot of in Nashville. For instance, this past week, my sweet step-daughter took us to see one of our favorite San Francisco artists, Chuck Prophet, with his band The Mission Express. They played at a small club not far from my house, and I spent the entire show being really, really happy. Also, Chuck was wearing a Waylon Jennings t-shirt, so bonus happy there.

And, I got to feel that way again yesterday when I got the report on my new set of scans. It was a really good report. It said that there is no visible cancer in my lungs, that all the tumors that were there are gone. It said that the constellation of tumors in my brain has gone mostly dark, except for one little 2 millimeter spot.  It said that spot was there on the last scan too, but it hasn't gotten any bigger. So basically, I have 2 millimeters of visible cancer in my body. And I think there's a good chance that 2 millimeters will disappear with continued treatment on lorlatinib. We'll find out with the next set of scans, but I am wildly optimistic. And it's funny to be happy about the fact that I have 2 millimeters of cancer, isn't it? I mean who else would be happy about having any cancer at all? Still, 2 millimeters feels like a win to me. But that win isn't mine. It goes to the researchers who created this medicine. It goes to all who have prayed for me and wished me well, and to the one to whom you have offered those prayers. I take every breath with gratitude.

So, is my cancer nearly cured? Not exactly. I still have stage IV metastatic disease. And that disease can rear its ugly head any time it decides to become resistant to treatment. But lorlatinib is a really potent treatment, and right now, it's working. So I'm having a moment here. And it's a pretty fucking great one!

What Not to Ask Someone With Lung Cancer

I know. You can't help it. You learn someone has lung cancer, and your first question is some variation of this: Did/does that person smoke? It seems an innocent enough question. I mean, after all, it says right there on the cigarette pack that smoking causes cancer. Duh! And we learn through anti-smoking campaigns early on that to prevent lung cancer, we ought not smoke.

But unpack that question a little more; when we ask  about whether or not the person with lung cancer smoked, aren't we are also asking for some assurance that if we don't smoke, we won't get lung cancer? In that framework, from the perspective of a self-righteous non-smoker, the implication here is that if a person who has lung cancer did smoke, the disease is that person's own damn fault. The given equation of smoking = lung cancer is ingrained in our culture. So, the question about a person's smoking habits invokes a stigma surrounding lung cancer that not only has social consequences; it affects even the way research funding is directed. See: Is There a Stigma in Lung Cancer Funding Research?

Here's something else to consider. If someone told you they had diabetes, would you ask them if they ate sugar? If someone told you they had heart disease, would you ask them if they ate red meat? If someone told you they had liver cancer, would you ask them about their drinking habits? Probably not. Certainly smoking is one of the chief behaviors correlated with a high risk of cancer, but it is not the only cause. Radon, second-hand smoke, toxic agents, gene mutations all can cause lung cancer. Some lung cancers are just idiopathic, perhaps caused by a perfect storm of any of the above. Some people smoke their entire, lucky lives and never get lung cancer. And I hate to undermine the self-assured non-smoker, but if you have lungs, you can get lung cancer.

So, if you learn someone has a lung cancer diagnosis, don't ask if they smoke. A better question might be: How are you doing?

Dating Myself

For one year in the 1990s, I taught English to high school and middle school students at a private academy, the sort of place where entering the "college of one's choice" (aka Harvard) was the expectation of each would-be graduate. One of the things fifth graders learned at this school, besides, ya know, rocket science and Advanced Mandarin, was to keep a calendar. From early on in the school year, those little polo-and-khaki-wearing wonders were encouraged to fill in their school-issued Franklin Planners with assignment due dates and extra-curriculars and whatever else people used to put in Franklin Planners. It seemed pretty apparent that this was early training for world domination, and knowing what some of these kids are up to now, it seems to have worked.

I didn't keep a calendar until graduate school, and then it was just to help me remember when I was supposed to go see my therapist.  Honestly, for a long time, I was pretty good at keeping a lot of that sort of stuff in my head. Lunch dates. Car and doctor appointments. What was on the syllabus for next week. I kept a sketchy date-book through my 20s & 30s, but relied just as much on a scattering of post-it notes and appointment cards slid under refrigerator magnets to keep me on track. Then, somewhere along the line, the requirements for me to be certain places or to do certain things at certain times outstripped my brain's and the refrigerator magnets' ability to keep them and me all wrangled. I think it's no coincidence that this happened around the same time I got a smart phone, which clearly, has made me dumber. Anyway, now I put EVERYTHING in my phone, information which somehow, through the cloud, also magically gets transferred to my laptop.  And for some of these things, I also create "alerts" so the phone can warn me days, hours, and minutes in advance of upcoming commitments.

But for some dates, I don't need reminders. Like Friday, July 6. Blood draw. And Monday, July 9, scans. And Tuesday, July 10, scan results and strategy session with Dr. Peacock. So sure, today is July 4, or actually, the small hours of July 5, and I've got scanxiety. And that scanxiety has been made worse by the fact that the folks in Boston have asked me to withhold a couple of doses of the medicine due to the neuropathy that has developed in my hands. And I know I shouldn't be too anxious about this, because neuropathy is a known AE of this drug, and, it is, after all, a DOSING trial, which means there will likely be adjustments in DOSAGE, duh! On the phone, the nurse practitioner assured me (without laughing!) that the cancer will not come roaring back twice as strong in two days because I skipped a couple of doses.

But still, the mind churns. This will be the first set of scans I've had since starting the lorlatinib, the first since the last scans which discovered brain mets and progression in the lungs. I remind myself, on the whole, I've been feeling good, that I haven't had any symptoms suggesting a rapid cancer progression anywhere. Why, just last week in New Orleans, my husband and I trekked through over 15 miles of urban hiking in just a couple of days. And last night, we went dancing.

Of course, it's true that my brain is definitely working more slowly; sometimes when I try to multitask, I just can't. For instance, I can't carry on a conversation while looking up the weather or directions on my phone. Also, my speech needs to be slower and more careful when I get excited, or I trip up on words; it's like my word retrieval mechanism can't synch with my thoughts.  I liken the feeling of my brain slowing in those moments to the sound effect in sci-fi movies when the spaceship is suddenly caught in a tractor beam and slows down --whoompwhoomp... whooomp......
whoomp.  But, is that slow thinking caused by a tumor, or by the medicine? Dopiness is a known AE of the drug, so I choose to believe my whoompy thinking is caused by the lorlatinib, and that the tumors are being held in check or even resolved. Still, only the scan will tell us for sure.

In the meantime, I can still enjoy the cicada songs and the stillness of the July night, finally quiet now after hours of fireworks. And tomorrow (or actually later today), I've got a car appointment, a massage, and a date for tea, or at least that's what my calendar says.