Cartographies and Cancer

I love maps. I love how each offers the cartographer's idiosyncratic vision of a place. We can map pretty much anything. Houses on a historic walking tour. Stars in the winter sky. The way from The Shire to Mordor and back again. Maps are imaginings of space, stories told or poetry made with lines and dots, numbers, esoteric symbols, and legends. We can't resist tracing them, moving our imagined selves across that imagined space with our fingertips. The map you see here, one of my favorites, traces the meander of the Mississippi River between Cape Girardeau, Missouri and Donaldsonville, Louisiana, showing how its course shifted (and implicitly is still shifting as I write) through the millennia. I'm captivated by the ribbons of pink and deeper pink, by the blues and greens curving and arching in great horseshoes through the Mississippi's capillaire Delta in a sensual visual rhythm. It’s a plotted design that looks abstract from a distance. The map here is a portion of a much larger iconic map that lots of other folks I know love too. In fact, poet and friend Heather Dobbins used it in the cover design for her book River Mouth. On seeing the map hanging in my dining room, another dear friend, Rebel Reavis, suddenly recalled that Donaldsonville was where her parents had met for the first time. Pretty much anyone who comes to my house finds themselves drawn to the map and remarks on it. That bit of cartographical magic has resonance, I tell you!

We take way-finding mostly for granted now, thanks to GPS. But we can imagine what it's like to travel in unfamiliar places without any map at all. How would we get where we wanted to go? All along the route we'd have choices to make, to go left or right, to go uphill or around the bend, to take the road more or less traveled, to move forward or stay put. Or go back. And we’d ask directions of people who know their part of the path, but not necessarily the whole route. Would we be lost? Maybe a little frustrated? Maybe, sometimes, very afraid?

In Advanced Cancerland there is no map. We might say things like "mapping the cancer genome" and declare it will lead to a cure. That's partly true. Though the cancer genome does not comprise the entire strange continent of this illness, it is at least a highly influential principality. But as far as navigating the whole landscape, from diagnosis to cure or, ugh, death, well, we're making that map as we go – testing blood and tumor tissue to find a treatment path, scanning, making new treatment choices when others fail and few or none of the options are all that good, taking direction from physicians and researchers who know their part of the route, but not the whole way there.

Sometimes the journey feels more like a game of Chutes & Ladders. We spin the dial, go a few spaces, get a chance to ascend the rungs, only to find ourselves on the next turn sliding back to where we'd begun.

Things in my part of Cancerland are actually going well at the moment. Just before Christmas I got the happy news that my particular brand of cancer looks like it’s going into remission in response to infusion chemo and radiation. So that was a great Christmas gift! I am grateful to my awesome team at Tennessee Oncology-Sarah Cannon Center – my oncologist Dr. Melissa Johnson, N.P. Lauren Welch, Dr. Casey Chollet-Lipscomb my radiation oncologist, and all the nurses and techs who helped me get through these latest treatments. I am of course profoundly grateful for all my family and friends who loved and took care of me, cooking, cleaning, etc., and to those who sent good vibes and put my name in their prayers. This remission allowed me to untether from the infusion clinic and to have a really good holiday with people I love, which is something I never want to take for granted again.

Of course we have no idea how long the remission will last. For now, I’m back on a full dose of the oral chemo, lorlatinib, in hopes that it will keep the disease in check. And we have a plan in place for if it doesn’t, another clinical trial, the next turn up ahead on the treatment path. But I won’t say lots about that right now, because if all goes well and the remission remains stable, I won’t need a new treatment plan for good long while.

I know how fortunate I am to be here in Remissionhaven for a second time. Many people with cancer never get here, and many who arrive don’t get to stay, as I well know. In the past couple of months, I’ve lost two dear friends, one to ovarian cancer and one to breast cancer, both of whom had experienced remission and subsequent recurrence. Their recent deaths are part of the reason I didn’t crow about my latest remission as I did the first time it happened. Grief and fear.

When you have a rare cancer best treated with cutting-edge medicines and you’ve reached that edge, everything begins to feel a little...improvisational, a little fluid. There is no cure, yet. Treatments are a kind of Hail Mary guesswork.  From where you stand now, you figure you’ll have this disease for the rest of your life, and there is no map for a way forward, only imaginings. Maybe the cartography of a life with metastatic cancer could look something like the Mississippi’s meander, looping over itself, finding a way, shifting over time, lots and lots of time, flowing and flowing.

Li'l Chemo, Li'l Fundraising, and a Bit of Pondering

Shelby Park

Here's the short version of my update, with longer ponderings added in below in case ya wanna go there. After having had radiation to treat cancer in the brain and in a lymph node, your friend Gamma Girl is now having infusion chemo plus oral chemo to follow up. It's going as well as chemo can go, which means I am spending a lot of time in a horizontal position streaming Hulu. My family and pups are taking good care of me, and I know I am incredibly fortunate to have them. Also, from my horizontal position, I am fundraising and helping to organize a Lungevity Foundation Breathe Deep 5K which is happening on October 19 at beautiful Shelby Park. The Lungevity Foundation is awesome and gives tons of money to research and patient advocacy, and it's hard to raise money from the post-chemo-infusion couch, so I'd love some help. If you have it in you to indulge yet another funding raising plea (I know FB is full of them!), click Breathe Deep and join my team, The Litwits. The team was founded by my beautiful colleagues at Volunteer State Community College. We're a crew of excellent English teachers, rad writers, and lovely weirdos!  If you live in or near Nashville or are a jet-setter who likes our country music-themed airport, you should totally come. Wear your running tutu, bring the family, dress up your dogs; it's a fun run! If you can't come but still want to be a part of it, maybe you could donate a little something to the cause of lung cancer research.

For more on the challenges of fundraising and infusion chemo, see the ponderings below, if you have a little time. Also below are some pics from last year's race. It was really cold that day because it was in late November, but we had a blast and raised some real dough. I promise the weather will be better this year with our October 19 date. Y'all come on out!

Long-ass Ponderings On Why I Continue to Fundraise

Know what I hate and am also not good at? Asking people for money. Just in general. For anything – for myself, for causes, for other people. Not good at it.

The truth is nobody likes to ask or to be asked for money, in most cases. Americans are actually pretty good about holding fundraisers and sending some spare change around to a few favorite causes when invited – Girl Scouts, cheerleaders, Little League, school band, churches, etc. Some of us donate to political campaigns. Me, I'm a sucker for scouts, the YMCA, and public radio. I also recognize that my donation patterns don't happen out of my innate desire just to do good. I have been and am a direct beneficiary over and over of those organizations I so gladly support, as is the case with many of us who have the privilege of being able to do any charitable giving or volunteering. We give because we are touched by something that organization does.

When I was diagnosed with stage IV metastatic lung cancer, I suddenly had a new cause that mattered directly to me – lung cancer research, of which I continue to be a direct beneficiary. I wanted to raise money, lots and lots of money for this suddenly very important (to me) cause. And not just because I believed it would lead to a cure or better treatments for me specifically, although let's not kid ourselves – it is, of course, one of my fondest wishes to die a very old, eccentric woman, and of something else besides lung cancer. But my fundraising impulse wasn't driven just by hope for my own kookie, aged survival, nor was it driven by some sense of lofty altruism. I started fundraising because I got pissed off, pure and simple. Early in my research about the disease, I learned that lung cancer is the NUMBER ONE CANCER KILLER IN OUR COUNTRY AND YET IS ALWAYS AT THE BOTTOM OF THE LIST FOR GOVERNMENT FUNDING OF RESEARCH.

And that hardly seemed fair. I should mention here that in addition to scouts, the YMCA, and public radio, I also love an underdog. Lung cancer is the underdog of government-supported cancer research funding, which is actually the main reason I was called to the funding fight. Why, you ask, is lung cancer the funding underdog if it's the NUMBER ONE CANCER KILLER? That doesn't seem logical, you say.  I know. I KNOW! But emotions are never logical and people have a curious emotional response to lung cancer – victim blaming. They immediately believe you gave it to yourself by smoking, so it's your pickle and you need to get yourself out of it.  I can't tell you how many times people have asked me about my smoking habits upon first hearing my diagnosis. It's a little disheartening to see the skepticism on their faces as I politely explain for the millionth time that ANYONE CAN GET LUNG CANCER, because as judgmental non-smokers, they want to continue to believe they are not vulnerable. I totally get that. You do everything you can to live a good, clean, cancer-free life, and it really sucks to be told you can still get cancer no matter how much kale you eat. But lung cancer can, indeed, happen to anyone, even non-smoking vegans. Fact.

Of course there is a high correlation between many cancers, many other illnesses and smoking (thanks tobacco industry for your brilliant and lethal marketing), but lung cancer has become the most stigmatized by its association with these tobacco merchants of death, even though non-smokers get the disease too. Regarded as a "smokers'" cancer (which, by the way also associates it with poverty, another stigma), it is seen as somehow unworthy of our government's research dollars. In fact, just this past month a spending bill that would have supported and prioritized a separate fund for lung cancer research came out of committee without those funds prioritized; lung cancer is going to have to compete for research funding with lots of important though less lethal cancers. And it's going to lose. It always loses. And that's where foundations come in.

So yes, I want to see a cure for lung cancer in my lifetime because, duh, I have metastatic stage IV lung cancer. I also know that might not happen, no matter how much I hope or fundraise for research. But I'm fundraising anyway, in part because I have already benefited from existing and current research, so my fundraising is a way of paying that back. Also, I have come to see myself as part of a wider lung cancer community of fellow patients, their families, researchers, and medical providers, and the people who love them all, a community that will extend into the future until we find a cure. My fundraising is also a way of paying it forward into that uncertain future, of trying to assure that research will continue to benefit anyone who might need it, because ANYONE, Ma, Pa, sweet, non-smoking Aunt Marylou, can get this stupid disease. So here I am waving at ya from the couch, a crappy fundraiser, in need of a li'l help from her friends.

Infusion Chemo 

And now, I'll climb down off the soapbox to give a quick chemo update.

After considering my limited options for addressing recent disease progression, my lovely and fierce onc Dr. Johnson and I settled on a multi-approach care plan that includes radiation, followed by continued use of lorlatinib at a lower dose, plus four rounds of infusion chemo, which we hope will act as a kind of dragnet to catch whatever cancer slipped lorlatinib's leash. The thinking is that if those mutated cancer cells get killed by the cytotoxic chemo, I'll be able to go back on full-strength lorlatinib and that it will hold me for awhile longer. The chemo I'm on, pemetrexed and carboplatin, is "well-tolerated," and is infused along with a ton of anti-nausea medication, so I'm not puking my guts out. The fatigue has been pretty awful, though, and I've had some dizziness, which could be a holdover from radiation too. Anyway, just today I finally feel like I'm really pulling up from the muck of it, which gives me a couple of weeks of "good" time to be productive (looking at you East Nashvillian magazine!) before I hit the couch again. I am scheduled for another infusion the week of the Breathe Deep 5K, but I'm still planning to volunteer at the event, even if I can't run. Hope to see you there.