Miss Diagnosed: Patient 3155175

It’s ovarian cancer awareness month. I didn’t always know that, but I know it now. 

I have cancer. 

Ovarian.

Advanced. 

I have advanced ovarian cancer. 

It’s hard to put those words together. It’s been two weeks and five days, and that’s only starting to feel real. 

What I want is to believe I’m still in the hospital, groggy from the anesthesia which 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 I wake up from after cyst-removal surgery.  

A torsed cyst is what the ob/gyn surgeon suspected. 

She explained that cancer is sticky and angry, and doesn’t tend to torse or twist, which is what my cyst seemed to do when it drove me to the ER the month before with vomiting and abdominal and pelvic pain. She said it sounded like “classic torsion,” and explained how the ovaries, when damaged or dying, can elevate the CA-125 (a cancer marker) to where mine was. She said it’s not only cancer that causes that number to rise. The NP also said an elevated CA-125 is a “concern,” but my numbers weren’t “crazy high.”

Because I’m me, 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. All three times, I was told yes. That was reassuring. I didn’t want cancer, but if a cyst caused an early ovarian cancer diagnosis, I could still see a way to o.k. The prognosis for ovarian cancer, when caught early, is 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 her “hope of hopes” was that it was not cancer. 

Not cancer.

That’s the diagnosis I want.

It’s not the one I have.

As it feels more real, it’s harder to take all the phone calls I get, answer emails, or texts. 

I can’t explain how I got to here and what comes next. The truth is I’m still piecing together that puzzle together. The learning curve is steep. There are three 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.

I’m overwhelmed with all the information, interventions, and implications. 

I’m also recovering from surgery and the “I’m just grateful to be alive” adrenalin is wearing off.

In medical terms, I’ve 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 four and a half hours. I was totally unconscious while in “childbirth position.” The surgical team cut, bagged, surveyed, biopsied, and rinsed my lady parts plus some and “delivered” them through my belly button and what’s referred to as the “vaginal exit.” 

There are several types of hysterectomies. 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 a YouTube video of all the possible procedures I could have had and shared them with me. It was only days after I was released, when I returned to the hospital with pelvic edema (swelling), a hematoma (bruising), and nerve-related complications from the surgery positioning and process (compression and “heat”), that asked (or got told) the type of hysterectomy I had.

I’ve now looked up words, descriptions, procedures, and got a copy of the surgeon’s notes. 

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. Cancer is a train I didn’t want to get on, and it’s moving fast. 

I’m not ready to plot the next steps or stage. 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 wanting 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 the cure any more than anyone else. 

Chemotherapy wasn’t on my September schedule.

The first of my six cycles will begin during ovarian cancer awareness month.