I’ve been dreading writing this entry.
I’ve put it off with the intent to come back and write it when I’ve got my mind back in order, but I don’t know when that day will be. But I do know that for every day I put this entry off, another day’s worth of events influences what I might write here.
So let’s just be as candid as can be, and let’s embrace the loose attempt to find a cogent narrative in all of this, since very little of it makes sense to me.
The night before my surgery, the gravity of the situation sunk in. This was it. Either I was going to wake up the next afternoon a revised man, approximately 1000 grams lighter, or I wasn’t going to wake up at all.
My most up-to-date advance directives were already on file, and my surgical team was already aware that my partner would be the guy to go to for any and all off-course decisions for my surgery.
But for all of my immersion in death positivity and in end of life planning awareness, and for all of my partner’s proximity to my passion project, neither of us were quite well composed for the actual discussion. He was definitely not prepared to see me be afraid of what might happen or of what might not happen. He got frustrated and mad, and he tried to sidestep the conversation. In turn, I was mortified and embarrassed that I couldn’t ‘walk the walk’ of the philosophy I proselytized here in my own home.
It just carried into the next day, right up to the final moments in pre-op. And then I woke up.
Everything had gone perfectly. I adjusted to the hormone change *immediately*. I was vibrant, radiant even, as much as one can be in a hospital gown and pumped with gas. My surgeon even commented on how it was as though we had extracted a poison from me, and now I was truly alive.
Neither of us realized the impact of that statement until some weeks later.
The lab called my surgeon at 5 PM with my pathology results only days before my next appointment with her. My surgeon lost sleep over the course of those nights anticipating my early morning follow-up. She was heavy-hearted and misty-eyed, but she was firm about being proactive in my long-term care. I did a spit test that was sent out that day.
My primary care doctor, by contrast, was very clinical and direct with his phrasing. But he was very much trying to reel me in and assuring me that this was small potatoes compared to the other delayed priorities in my file.
And I myself have been mulling over how I wanted to broach this for weeks. How I wanted to broach it here; with my friends; with my alleged vocation.
In true over-sharing fashion, I initially posted my immediate shock to my instagram with a close-cropped of the photocopy of my pathology results. The first draft that posted of this was laden with scientific language and with euphemistic suggestions that tempered the gravity of the situation (more on that below). I’ve since revised it. Because the fact of the matter is: I had fucking cancer.
Per my pictured pathology documentation:
The high grade squamous intraepithelial lesion (CIN-3) is present in all four quadrants (endocervix) […] CIN-1 is present at the ectocervical margin […] there is a possible focus of deep endometriosis in the cervix with tubal metaplasia […]
Additionally, there were curious cysts on the ovaries and fallopian tubes, but those, while horrifying, are otherwise irrelevant to this diagnosis.
In brief layspeak, abnormal growth and development was spreading across my interior and exterior cervix, and cell changes were triggered in unusually growing lining tissue. However, because this was all superficial growth, this condition is referred to as carcinoma in situ, meaning “in the original place.” According to the American Cancer Society, this classifies as:
Stage 0 (Tis, N0, M0)
The cancer cells are only in the cells on the surface of the cervix (the layer of cells lining the cervix), without growing into (invading) deeper tissues of the cervix. This stage is also called carcinoma in situ (CIS) which is part of cervical intraepithelial neoplasia grade 3 (CIN3). Stage 0 is not included in the FIGO system.
In short… this is Most Definitely Cancer™, but, depending on the provider’s relationship to the FIGO, not cancer enough to count as The Big C. (The unilateral safe word appears to be “precancerous condition,” which was one of the words I used initially in my Instagram post.)
A little over a year out and holding post-Pulse survivor’s guilt following a massacre I barely missed, I’m feeling a new weight in my chest: the anxiety of not knowing that I even had this abnormal development (my paps prior to surgery came back normal)… combined with the shame of feeling that my experience is incomparable to the experiences of *real* cancer survivors who are subjected to the traumas of radiation and chemotherapy. In my head, my ignorance was a get out of jail free card.
Despite the fear of knowing that I’m at an advanced risk of it happening again in my remaining tissue (or of developing a secondary cancer altogether), and despite the fact that I’m now the third in my immediate family to have developed a cancer, I feel that this is all going to reveal itself in the genetic test to be a huge overreaction and a grave misunderstanding.
Despite that I made an appointment with an oncosurgeon who specializes in the cancer that my Ashkie grandmother succumbed to and that my Ashkie father is facing, I’m having trouble imagining myself saying the C-word outside of the confines of my extended bedrest, despite the fact that the dx ‘cervical cancer’ is literally written into my medical records by trained professionals who have no motivation to over-inflate my ego.
Without downplaying the very real relief and happiness I’ve gained from this life-changing procedure, I’ve also come out the other side of anesthesia feeling like a total fraud.
Here I am, this alleged death-and-dying advocate, parroting quips of death positivity and showing off My Directives!, hobnobbing in the hospices and hospital chaplaincies!, casually unearthing long lost graves and genealogical records… angry and embarrassed by my partner’s tears!, crying in the pre-op ward as if I never contemplated death before!, waffling over whether or not I really had a near-death close-call if I didn’t catch it as if trees falling in the woods don’t quake the earth with tremendous crashes!
Despite the fact that I’m writing this with the intent to share… and despite the fact that I want the general people in my life to know that this happened to me… and despite that I want to hear affirmation that these people know this happened… I’m already exhausted by the potential range of responses. I don’t want people to come to my pity party! (And I most certainly don’t want the upcoming summer Death Café Orlando session to become a pity party.) But I also don’t want to hear neck-breaking reaches to assure me that everything is going the be Good™!
And I know that I can’t anticipate how folks might react one way vs. the other. I know I can’t police people’s emotions any more than I can take accountability for the fact that I has fucking cancer and didn’t know it and wouldn’t have known it otherwise.
But I can try to be a better professional–not because of it, and not in spite of it, but a better-abled and more level person who can anticipate and accept The Unpreparable in a movement that advocates for so-called early intervention death preparation.