I've Been Trying to Write This

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.

 

Happy Fourth

 

Happy fourth day of Christmas! It's also my fourth Christmas season alive on the planet since being diagnosed with incurable cancer. Yay for survivorship! On top of that, it's the first year since that diagnosis that the awful cancer hasn't been actively trying to kill me—my most recent scans show I've had a whole year of disease stability, in this, the most unstable of all years my generation has ever seen. So, ya know, deep, deep gratitude here, because I love a cruel irony that keeps an otherwise healthy, travel-loving cancer patient from running around the globe doing bucket-listy things during said spate of good health. But there's privilege at work. I didn't do anything to deserve being cut such an easy break at such an awful time. 

So here I am, for the moment, well enough to work (yay for editing projects!), and fortunate enough to do that work from home. Also on the list of blessings: there's a stocked pantry and fridge (and liquor cabinet). We got to see the bright--heavy conjunction of Saturn and Jupiter just over the horizon a few days before Christmas. We decorated the bare Bradford Pear trees in the front yard with Christmas ornaments and put up some lights and garland, and it only felt a little forced. I made a wreath and an advent calendar (both of which turned out okay) and tried to learn knitting again, and failed, again. My family gave and received nice holiday gifts (nothing too extravagant, everything thoughtful); we had delish holiday fare on the table, and everyone in my household and extended household has kept well.

Still, the shadows fall deep in the winter darkness, and they chill some part of my soul with fear and anxiety. Two of my best friends risk their lives every day on the COVID frontline, and I worry about them constantly. One of them got the virus and, thankfully, recovered after being pretty damn sick. 

December has some tough anniversaries for me too. Last year in December I lost two friends to cancer, one on December 4 and one on Christmas Day. The year before that, my dad died on December 3. As we approach a new year, I'm reminded that I lost another friend to cancer in this past year, another 2020 shadow. In March of 2020, my city was hit with devastating tornadoes, and on Christmas Day, just four days ago, a man bombed our downtown. 

And I'm still alive.

I'm doing, what they call in Cancerland—or probably in any Gravely Ill Land—survivorship. I'm living, with the disease in the midst of all that is crazy in the world. Phrases like "for now" "at the moment" "stable" "disease in check" pepper my responses to queries about my well-being, underscoring the temporariness of it, the other-shoe-ness, but also calling attention to the fact that I am in the most enviable of positions. I am well. Well enough, anyway. And I have friends and family members who have cancer and/or other severe health problems who are not well enough, who are struggling with treatment decisions, suffering from severe treatment side-effects, struggling to access treatment, friends who are actively dying as I write this.

I don't say that to be grim. We all live in this world, with its shadows and griefs and aching hearts, with lives approaching terminus. I'm not telling anyone something they don't already know. The losses, the anniversaries of the losses, mark the time for us; weirdly, they become steady points of reference in the before and after of this crazy kinked and loopy path we're on. Periodically the iPhone and the social media accounts throw up "memories" (gee thanks) that startle—oh! that picture was taken BEFORE diagnosis; that one was taken the last time I saw Ann, and that one was the last time we were all together. 

The one for this post was taken for The Fourth Day of Christmas in the fourth year of diagnosis. Four calling birds. Three french hens. Two turtle doves. And a partridge in a (Bradford) pear tree. Counting blessings. So many. So very many.