A lot of cancer patient support these days takes place online, especially for people with rare cancers who are few and far-flung. So patients "meet" in Facebook groups, or on Zoom; they share stories, give each other advice about treatment, carry on research advocacy and fundraising together, participate in awareness campaigns. It’s so incredibly helpful and hopeful to communicate with and be a part of this diverse group of people living with cancer. But it also breaks your heart.
Because someone you “know” from a forum online, say someone in complete remission, is no longer so. Another whose tumors were stable, you learn, now has tumors that are growing. Someone who was improving is suddenly in hospice. You're sitting around waiting for your next scans and someone else you "know" has scans that are "mixed results" or "bad news." Someone else who was "cancer famous," a well-known beloved patient advocate, dies.
None of it is actually all that sudden. You know it's coming; you follow the blog posts, the tweets, the FB posts, all less frequent as the person you "know" moves closer to the end of life, and then the post is in a different voice altogether, the loved one sharing the obituary. The losses come heavy and fast in Cancerland; the disease is relentless, indiscriminate, unforgiving. You are gutted. And.
With each loss, each setback in another patient, you feel that thin hot wire of dread wrap itself a bit more tightly around your heart. You taste the gall of loss (even though you only “knew” them online!) and find yourself increasingly triggered by phrases like ¨she ran out of options,¨ or ¨she ran out of time.¨ You wonder what your next scans will bring. You wonder if you’re somehow squandering this gift of life, however temporary, on fears and complaints instead of serving others well, instead of finding your true path. The days and nights feel always a little—and sometimes a lot—fretful. Or just plain sorrowful.
Frankly, it’s not a great way to go through life. In fact, off the top of your head you can think of about a billion ways of living that are better and way more fun. But there are also much worse circumstances one could be in, worse illnesses even, yes, worse than cancer and way more debilitating.
Anyway, it’s the life you’ve got. Carcinomie life. So you do your best to shape each day into a lumpy, grateful prayer, even in the face of this thief of joy. You think of the future in terms of months, weeks, days. Years are an abstraction. You make plans because you refuse to let the thief in. You keep your courage up and go about your day-to-day, trying to get it all in. Trying to help. Trying to do a little something in the time left. You aim to be cheerful, to act like a decent human even though you’re angry at these ravages and your heart is breaking every day.
And then you look up and it’s nearly Christmas, time for your own scans. And you hope on hope that you get exactly the same gift you received the year before, clear scans, good health, and the chance to make some plans for the New Year. You know you don’t deserve it, that people much better than you, smarter, harder working, parents of young children, grandparents, gifted artists and scientists, you name it…that cancer, especially lung cancer, has stolen them away too soon.
Then, your radiation oncologist comes bursting into the room before the nurse has even finished vitals and you can see her smile, even under her COVID mask, and you know. This year, you get to pass Go. In fact, this morning you found $150 stashed deep in the pocket of an old purse, but didn’t want to take it as a sign because that felt wrong. Anyway, you’ve had more good fortune. You don’t deserve it. But no one deserves lung cancer either. So you do what you always do, what you always did at the end of each academic semester when you used to be a professor and the wheels had come off on your teaching and student failures felt personal. You resolve to do better. To be better. Or at least to pay more attention to each day and to find what is holy in it, to be grateful for that gift. It doesn’t feel like enough. It never does.
