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.