I skipped this in the pleasure of writing a little love story last week, but I had my last Herceptin/Perjeta infusion on May 30, and this past Thursday morning my port was removed. I no longer have a door in my chest; instead, I have now officially passed through the door from “treatment” to “survivorship.”
Of course nothing is ever that clear cut, least of all the whole question of what, exactly, “survivorship” means, and whether or not that’s even a useful frame for looking at this period post-treatment. In the official lingo of cancerland, you’re actually considered a “survivor” just as soon as you’re diagnosed, and this designation endures just as long as you do, so it’s kind of useless as a determinant of anything more fine-grained than whether or not you are still breathing.
Dr. Susan Love argues that the term “survivor” implies that you have more control over your situation than you actually do. As many, many critics have pointed out, the language of battle so often used to describe cancer and its treatment marginalizes those who don’t make it. “Those who die of the disease,” she notes, “are no less worthy those who survived.” She likens cancer “survival” to the experience of surviving a natural disaster — an experience you do not enlist willingly and from which there can be a cornucopia of collateral damage that can change the trajectory of your life.
In my case, it’s possible I will have a second surgery in the coming months to address the knot of scar tissue that’s impairing mobility on my left side. I continue to struggle with the side effects of tamoxifen — the excruciating cramping (it turns out the drug is the culprit!) along with the hot flashes, the fatigue, and the joint pain. And, of course, my body will be monitored for the rest of my life against the omnipresent threat of recurrence. Closely for the next few years — mammograms every year, check ups every three months — and then, assuming all is well, less so. But my psyche is granted no such structure of care. I’m told you learn to live with this uncertainty, ever wondering when the other shoe will drop, lugging around your Schröedinger’s Tumor wherever you go. But clinically, according to my oncologist and to the nurse with whom I had my “survivorship consult,” I’m through the door and off into this blurry future.
The actual end of treatment was anticlimactic — no ringing of bells or banging of gongs, which was fine by me. My favorite nurse laughingly apologized for the lack of drama but, as I told her, I’ve had enough drama for the past year, thanks.
The port removal was similarly abrupt. I’d been told there was a three-month waiting list to get these devices out, and was fully prepared to have to wait until August, when the scheduler called at 5 pm on Wednesday to see if I could come in the next morning. With a 90s playlist running in the background, a doctor, a tech, and two nurses hovered over my chest, slicing into the original scar and pulling out the port. I couldn’t feel the scalpel, but I could feel his hands tugging at the port, as the long piece of tubing slid out of my vein and out of my body. He showed it to me afterward, the plastic still a little slick with blood.
I was so used to having it there, my marker, my worry stone. With it gone I slide back into the happy anonymity of middle age, the last external signifier of illness tossed into the medical waste bin.
The other day, on the way to ballet, I killed a bird. A pigeon, standing in the middle of the road. I thought it would flap out of the way, as birds tend to do when faced with an oncoming vehicle, but it just sat there and I braked too late. I felt – still feel – terrible for this cruddy urban pigeon, until the moment of its demise just minding its own business under the 90/94 overpass on California Avenue, and for the past week I’ve been trying to make some sort of meaning out of this moment of unexpected violence, one in which I am the villain not the victim. But I think maybe there is no meaning to be made. “When you meet the Buddha on the road, kill him,” runs the saying — for the Buddha is not really the Buddha, just a manifestation of your own longing for enlightenment, whether delivered via religious doctrine, medical prognosis, or the casual brutality of a bird’s life in the urban wild. The answers are not to be found externally; you have to be your own guide through this great and winding mystery.
Last night I played a small part in staging a show – two bands and a short play — in a beautiful old church turned concert venue in Chicago’s West Loop. I stood at the light board and watched my friends perform the play, written by another old friend, and then the bands took their turns, old friends and new, and some I haven’t seen in many years. My body vibrated with joy as the cornetist and trombonist took the stage to join in for the final song, the rafters reverberating with horns, strings, guitars, drums. One of the musicians was a survivor of his own cancer disaster and afterward he asked me how I was doing, and I told him, and we compared port scars.
“I’m feeling good,” I told him, “except for … you know,” and I waved my hands around vaguely.
“That’s great,” he replied. “That’s all that matters.”
And it is; I’m feeling good.
Your piece today got me thinking about "survivorship." All of us still breathing are in this nebulous state of survivorship, but speaking for myself, I haven't had a whole lot of say in the matter -- it's mostly just accepting being born, being cared for, and keeping ourselves fed and reasonably fit to keep on keeping on. Nothing heroic about it. So, anyway, I looked into the meaning and etymology of the root. Survive (v.)mid-15c. (implied in surviving), "to outlive, continue in existence after the death of another," originally in the legal (inheritance) sense, from Anglo-French survivre, Old French souvivre (12c., Modern French survivre), from Latin supervivere "live beyond, live longer than," from super "over, beyond" (see super-) + vivere "to live" (from PIE root *gwei- "to live"). Now that I think over these words I can read into them a deeper meaning, that one who "survives" implies having overcome some crisis. That is, indeed, what you have accomplished -- you have overcome. Well done, you.
You know as I read this, I thought about my own journey and it occurred to me that I never once thought about cancer coming back in the past 8 years. I don’t know why. I openly talked about my journey and being a “survivor,” but not about recurrence. I saw my breast surgeon every year for a checkup, but still never thought about the whys of it or that she might one day say something other than “Everything looks great, see you in a year.”
Until I got diagnosed with cancer again. And now I can’t stop thinking about when (not IF) I beat it this time, there’s only a 27% chance of it NOT recurring within 5 years. Will I get lucky? 🤷🏻♀️