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!
