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