You know, you’d think that after about 7 years you would have your hands around something and have regained some semblance of control. There you are walking along, your cool-collected self, sticking your toe back into the cancer pool. A thing of the past it is, the trauma now seems manageable. While not always nonchalant, you can begin to at least chitchat casually about the experience of cancer without totally losing your cookies.
Yep, that was me; cool, calm, collected 7-years-out me. “Oh yes I had cancer, “I would say, “but it was a long time ago, it wasn’t so bad.”“Yes,” I would say, “I can write and talk about, and even counsel people on PTSD and cancer,” as if it is a thing I now carry in a air tight jar, having now captured and contained it. In fact, as you know, I willingly take the jar out for all to see, allowing folks across the globe to peer in through the glass at my trauma like a freak specimen of something horrific. I will mightily add too that the jar is sealed so tightly these days that try as I might when I write, I often can’t unscrew the lid even a smidgen in order to get a whiff of its contents so as to summon my muse.
Yep, there I was, cool collected Lauren just walking along with my Jar O’Cancer PTSD in my backpack. A together girl, despite having a near miss with death.
And then I got this funky little illness. It started with the twinge you girls know so well, the one that makes you scream worse than labor when you try to pee? That one. As a rambunctious young un’ I had my share of UTI’s so I continued on to the doctor with my nonplussed, we’ve got this attitude of late. With a report of “clumps of white blood cells in my urine” and a fresh scrip in hand, off I went, fully expecting relief in a day.
Three days of antibiotics later AND with no improvement AND even more sharp pain AND something in the nether regions feeling “big” and IMHO tumor-like AND an almost inability to pee (to which my anxiety surely did NOT contribute,) I had my industrial strength vise grips out and was unscrewing the damn the jar.
I called the gatekeepers aka advice nurses, for a work in appointment three times in one hour as I recall (maybe more as they insisted on lying and saying so.) As they heard the incremental deterioration in my composure in each successive voice mail, they drew straws and the recipient of the short one called back, telling me my doctor would call in a new antibiotic. I told her that this was unacceptable, as I was sure I had coochie cancer. Well I didn’t exactly say that, I think it was more along the lines of, “I need to be seen today as something feels seriously wrong here.”
Now, my GYN knows my cancer history so at my appointments she usually enters the exam room with her own vise grips in her white coat pocket in place of a stethoscope, all prepared to tighten the lid back on my little jar. It is old hat to her, the acts of retrieving the lid despite my attempts to hide it under the exam table and wrestling the jar from me to recap it. In fact, the first thing she does now when she walks in the room is calmly and immediately pick the lid up off the floor; she announces as she inspects my very worried-over post hormonal cancer ovaries and runs her fingertips over what is left of my breasts, “There is nothing worrisome here, feels PERFECTLY NORMAL Lauren, no cancer, nothing scary here Lauren.” In fact, I am one of the few people who the yearly pelvic ultrasound nurse has been given special dispensation to tell the results to while she is scanning.
Tightening the lid, a turn at a time with each soothing comment, she knows some of what it is to have been so sick. But there is a lot she doesn’t know.
What she doesn’t know is that I waved my hands around for a year about this breast lump and no one listened, stupidly choosing instead to listen to the false promises of a negative needle biopsy. What she doesn’t know is that my mother’s ultimately terminal cancer was misdiagnosed and dismissed I might add, as “stomach problems” until it was too late. What she doesn’t know is that Herceptin simultaneously saved my life and almost killed me, and that if I had not flagged a chemo nurse down when something in my chest “felt seriously wrong,” it would have done the latter. What she doesn’t know is how I went in for an ultrasound for what was thought a “routine cyst in my nipple” and sat there cold in the dark with the screen illuminating the horror on the ultrasound tech’s face. What she doesn’t know is that for months before my cancer was diagnosed, I had a pain under my rib cage that made them fruitlessly explore gallbladder problems to the point they thought the pain somatic but which in the end disappeared after cancer treatment, cementing my belief in the concept of satellite pain.
What she doesn’t know is that just sitting in an exam room after cancer provides nothing but gallons of the viscous oil needed to lubricate the jar lid; that “work in” appointments and their agonizingly long wait do nothing but serve to allow the oil even longer to work and loosen even the tightest of lids.
So by the time she entered the room to examine me, the lid was off the jar and tossed across the room; she could hear it ricocheting against the walls before she even entered as the nurses (in their hushed tones just outside the exam room door) had already primed her on my mental state. Yes, by the time she entered the room, I was inhaling the contents of the jar like a hyperventilating woman with a paper bag. By the time she entered the room, me and my WebMD app could have already told her I had bladder cancer, or a vaginal cancerous tumor resting on my bladder or maybe even urethral or kidney cancer. Surely my insides were being eaten up by some kind of cancer because DUH, why else would there be infection fighting white blood cells in my pee and my hoo-ha be as they say here in the South, all swolled up?
But because she knows me, she quietly picked the lid up off the floor and nonchalantly handed it to me. While I begrudgingly agreed to at least hold it in my hand while she checked me, I refused to screw it back on just yet. I blubbered and whined like a two year old as she looked down yonder, my quivering voice asking, “Is it cancer?” “No, Lauren it’s not cancer. Nothing scary here. We just need a new antibiotic.” “BUT WHAT ABOUT THE WHITE BLOOD CELLS!” I reminded her, as if she forgot this very important clue to diagnosing my cancer. “No Lauren, no big deal.”
And with her calm hand over mine, she helped me guide the lid onto the jar. She helped me begin to turn it, a rotation at a time with each of her so right words in their soothing cadence. “It’s nothing Lauren, it’s not cancer, nothing scary here,” until the threads caught. “Get dressed” she said, “and we will talk some more.” (Probably about how it really was cancer I thought, and she just didn’t want to tell me with my feet stirrup-ed and crotch in the air)
I think she purposely gave me more time to “get dressed” than she knew I needed. Leaving me to myself in the room with my jar in my lap to think about what had happened; to make some progress in screwing the lid on alone.
What I did was I sat there, stunned and embarrassed by this out of nowhere, complete and total loss of my shit. While I would like to think that my pain level had something to do with my meltdown or that my fatigue at being up all night with burning lady bits unleashed the emotions, I know it was my old friend PTSD.
As I began a slow and deliberate clockwise turn of the lid in my hands, I realized that cancer PTSD can come out of nowhere and that whether I like it or not, or think I am all holier-than-thou-over-it I’m not; it is a fact of my life. And that while I can apologize for its satellite manifestations in my behavior, I won’t apologize for the emotion which prompts it because that pain is real. There are so many covert memories inside us that smell and sound and feel like cancer; invisibly, silently recorded within us until years later when we hear them as they make the slow scraping sounds of return, like metal turning against a glass jar.
She walked back in and I quietly said, “I am so sorry for how I acted. When you have had cancer and your body is doing something it shouldn’t be doing, you kind of panic.” “It’s okay,” she said, “I totally get it.” We talked for a while about all the non-scary non-cancer non-tumor things it could be and with that, I put my re-lidded jar in my backpack and went off to Target, three new scripts in hand. Confident, at least sort of, that I will live another day.
Like lightning bugs in a jar it is, something you have captured and contained. But they will light up from time to time.
You need to feed them occasionally too.
And you must, must, must, give them air holes to breathe.
The difference between the right word and almost right word is the difference between lightning and a lightning bug.