I have cancer. Advanced ovarian cancer.
It’s hard to put those words together. It’s hard to believe this is real.
What I want is to believe is that I’m still in the hospital, groggy from the anesthesia that hasn’t worn off yet. I want to be in an altered state where it’s just the fear talking, a conditioned trauma response sending me to catastrophic thinking.
I don’t want this diagnosis.
I want this to be a bad dream.
Prior to the surgery, the ob/gyn suspected I had a torsed cyst.
She explained that cancer is sticky and angry. It doesn’t tend to torse or twist, which is what my cyst seemed to do when it drove me to the ER the previous month with vomiting and abdominal and pelvic pain. It sounded like a “classic torsion,” she said and explained how the ovaries, when damaged or dying, can elevate the CA-125 (a cancer marker). Mine was elevated, but not that much. "It's not crazy high," a nurse had said.
Because I’m me, I still worried. I asked three medical people, “So on the off chance it’s cancer, can I assume it’s early stages?” If I can plan for the worst, and the worst seems manageable, I feel better.
They all said yes. They all said that if it was cancer, it was safe to assume it was in its early stages. That was reassuring. If a cyst was causing an early ovarian cancer diagnosis, I could still see a way to o.k, because the prognosis for ovarian cancer, when caught early, is good. The prognosis, when caught later, as was the case for my grandmother, is usually not good.
But no one promises anything, and my surgeon didn’t either. As the first ob/gyn had said, “images are still just images,” and can’t show everything. My surgeon said she couldn’t say for sure what was going on without going in. However, her hunch was that I had a torsed cyst and had “hope of hopes” was that it was not cancer.
That’s the diagnosis I wanted.
But it’s not the one I have.
There are several types of ovarian cancer, and within the types, there are high and low-grade tumors, tumors at different stages with or without genetic mutations, and varied treatment approaches. Mine is a high-grade serous ovarian cancer (HGSOC), with a STIC (serous tubal intraepithelial carcinomas) starting point. Ovarian cancer itself is not well understood. For example, many believe it doesn’t even start in the ovaries but in the fallopian tubes, at least for some. It’s hard to improve prevention or cure when doctors don’t know the basic anatomy or starting point of a disease. Currently, though ovarian cancer is the most fatal of all gynecological diseases, there's no screening test to detect it so it's rarely found before it's advanced.
There are several types of hysterectomies as well. I’m embarrassed to say I didn’t even know which type I’d had when my STEM-loving teenage daughter asked me. She watched aYouTube video of all the possible procedures I could have had and shared them with me because she follows some biology dr. on Instagram.
In medical terms, I had “a total hyst, bilat BSO, excision (of) pelvic tumor, bilat pelvic & aortic lymphadenectomy,” and “omentectomy.” In other words, my uterus, cervix, ovaries, fallopian tubes, omentum, a ton of lymph nodes I didn’t know were all removed as well as the cyst-turned-tumor thing and parts to biopsy.
My core is a carved out pumpkin. Instead of being scraped out with a spoon, high-tech “arms” guided by humans were inserted through my belly button, pelvis, and abdomen. The process took 4.5 hours.
During the surgery, I was totally unconscious while in “childbirth position.” The surgical team cut, bagged, surveyed, biopsied, and rinsed my lady parts, and then some, and “delivered” them through my belly button and/or what’s referred to as the “vaginal exit.”
The “I’m just grateful to be alive” adrenalin is wearing off, though I remain grateful I didn’t die during surgery.
Only days after I was released — when I returned to the hospital with pelvic edema (swelling), hematoma (bruising), obturator nerve-related complications from the surgery process (it got “heat” on the right side), as well as the awkward and prolonged positioning (causing compressed nerves on the left) — that I asked or got told what type of hysterectomy I had.
I then asked for the surgeon’s notes.
I’ve now looked up words, descriptions, procedures, and even images. I’m overwhelmed with all the information, interventions, and implications.
It’s hard to keep up with, make sense of, or recover from what’s already happened while trying to plan what’s next. I’m still struggling for footing and balance, metaphorically as well as literally.
As it feels more real, it’s harder to take all the phone calls I get, to answer emails or texts.
I’m not ready to plot the next steps or stages. I want to halt time, slow down, stay right here. I don’t want to be bogged down with the physical, emotional, practical, and financial considerations of being ill while also hoping to be able to fully function as a mother, friend, writer, woman, sister, daughter, partner, employee, and person.
But that’s not up to me.
I don’t get to pick the time, the challenge, or cure any more than anyone else does with this diagnosis. Cancer, surgery, and chemotherapy weren’t in my life, schedule or in my calendar even a month ago.
They are now.
Cissy's note 11/22/19: This was written after surgery and before chemotherapy started. I've just finished round four of chemo (given every 3 weeks) and am responding well to the treatment. I'm working very part-time for now but looking forward to 2020. I'll post more about this process, over time, including trying to find trauma-informed oncologists and research about the connection between ACEs and cancer, childhood sexual abuse and gynecological cancer, etc.
When I believed what I had was "just" a grapefruit-sized cyst, I pictured all 8 of my ACEs in it so that they could be removed from my body, too. My co-worker, @Carey S. Sipp (ACEs Connection Staff) suggested I was having an "ACE-ectomy." I LOVE that word. When I found out the cyst was cancer, I've continued to think of it as clumped up and old ACEs residue.
When I do guided imagery, I imagine the ACEs impact, along with the cancer cells being eradicated and healed by my immune system. When my tumor markers go down, I imagine it's the relief of carrying less trauma in each cell. Who knows, I may rebound from cancer feeling healthier than ever thanks to the ACE-ectomy! Before I lost my hair, my friend Heidi planned a photoshoot and brought blank canvases to write on. As well as some angry F-cancer signs, I wrote my intention to be healed in all ways by 2020. It's possible.
It's odd to see a photo of myself with hair as that's now gone. @Jane Stevens (ACEs Connection staff) said I could be her buzzcut buddy. While I am quite sure no one rocks this look as well as she does, her example inspires. Losing my hair was not as hard as I'd feared it would be and I'm not sure that would have been the case if she'd not led the way and wrote about it so beautifully here. We need to have real-life examples of those who have walked in our shoes. At least for me, no matter what I'm surviving, little else offers more comfort.
I know this post is heavy but I must say I have had so much support. I have never felt more loved in all my life. I'll share about all of that as well. It's been more healing than grueling, overall.
Plus, when I'm cold, my dog seems to know and warms my head and heart.
I'm better able to savor moments. When asked how I am, my new mantra is this: "In this moment... I am (fill in the blank)," and it astounds me how often I can honestly say, "good, great or o.k."
As so many have reminded me, and now I truly get in my gut, this moment is all any of us have and are guaranteed.