Before I knew what pelvic edema was (think a lot of swelling in the pelvis), I’d just say, “It just feels like I’ve been packed with nine baseball gloves from the waist down.”
I thought baseball mitts because some parts of my skin were hard and soft, while others were light or dark, and I felt weathered unevenly, like leather. I was also badly bruised, but I didn’t know that either. I’d never had major surgery, or even been in the hospital overnight. I’ve not given birth either, as I became a parent via adoption. I wasn’t sure how much the body changes after IVs, anesthesia, and being tipped halfway upside down for five hours while unconscious as drugs, fluids, gas, and machines fill the belly, and machines and surgeons decide which organs to keep or cut out. I’d been scheduled for the first surgery of the day, the easy-in and easy-out one because it was expected to be easy. No one, not even the surgeon was prepared for cancer and the way it spread. And no one had even mentioned that I might, that day, be “delivering” my cantaloupe-sized growth, some internal organs, and 60 lymph nodes, or what that recovery might entail.
Now, I’m in a steep learning curve. Now, I’m trying to be more literal, specific, and scientific so that I can understand and be understood by medicine. Now, I’m trying to speak a new scientific language to discuss symptom assessment and treatment plans.
My daughter left her biology notebook on the kitchen table and forwards me amoeba sisters' videos so I can learn about cells, genetics, and the immune system. Writer friends, my aunt, and my sister help me find research studies and survivor forums. I scour the internet daily and sometimes hourly.
While a nurse told me to stay off “Mr. Google,” I insisted that would be impossible, and that for me, with ovarian cancer, it’s definitely Ms. Google I’m turning to. It was Google that helped me realize I had pelvic edema before it was caught by my medical team. It was Ms. Google that helped me find cures for the rash I got after I lost my hair, and also Google that helps me understand my prognosis and to find a local wig shop. And Google scholar helps me stay up on current research.
I feel like I’m cramming for a test on ovarian cancer even though I’ve never been good at anatomy, biology, or technology. My cousin and I sat on a couch talking lymph nodes last week. Neither one of us knew that humans have hundreds, not dozens. We looked at images of the omentum, a curtain of fat over the belly. Until mine was removed, I didn’t even know it existed or why.
Truthfully, I’ve been as ignorant about the inside of my body as my car engine. How often have I just let others tend to what’s under the hood?
In college, when I had my second ever gynecological exam ever, the nurse practitioner handed me a mirror and asked me if I wanted to watch.
“Watch? Watch what?” I asked.
I took the mirror and held it up to my face. I thought she must be asking if I want to see how my face looks when a speculum is inserted. She guided my hand with the mirror down so I could see my own body as she was doing the procedure. Hell no! I put the mirror down. That was three-plus decades ago.
Today I would take that mirror and learn all I could. But as a survivor of childhood sexual abuse, it had never occurred to me that my body was mine, for me, and something I should know about, never mind care about.
I didn’t know words like disconnected, dissociated or traumatized. I didn’t know others inhabited, explored, and were interested in their own bodily needs, functions, and basic anatomy. At the time, the mere idea that anyone would say “Yes” to “Do you want to watch your GYN exam?” baffled me.
It’s been the work of my life to become less ashamed and more inhabited in all parts of my body and being. This willingness to attend to and expect decent treatment, for me, is a victory. The fact that I do not refuse to call the doctor, I expect to be called back quickly, and will indeed photograph my vulva and share the photo if it will assure me a night of peace is evidence of healing.
Many people use the phrase CPTSD to stand for PTSD from complex trauma. To me, C-PTSD means cancer and PTSD. I have cancer and I’m a trauma survivor. I’m a survivor with cancer but not yet a cancer survivor. Will I be a survivor squared?
I wish I had more trust in medicine. But I’ve been burned. I’m dubious about the providers, lab techs, and diagnostic equipment because my growth was missed despite five different appointments from April through August of 2019. I had been diagnosed with shingles, a urinary tract infection, a stomach bug, and a cyst all while complaining of pelvic pain and pointing to the precise spot where my cancer was growing. The cause of symptoms was missed by two primary care doctors, a nurse practitioner, an OB/GYN, or the ER doctor. The cancer was also missed despite blood and urine tests, one MRI, two CTs, and three ultrasounds. Why wasn’t prevention and cure the focus back then, when it would have mattered the most? Now that I’m stage 3, prevention is a moot point.
But sometimes, I wonder if my mistrust in medicine is actually a type of power, an asset, a curious edge that allows me to be proactive. This too feels like healing.
When diagnosed with PTSD those many years ago, I gave all my power over to the “experts” and did little that wasn’t recommended. I was a by-the-book kind of person, a person who followed directions. I had friends who questioned, challenged, rejected traditional drugs and treatments and set out on their own healing path. While I admired and learned from them, I was too afraid to follow their lead. Three decades later, I’m a pain-in-the-ass patient who refuses to be patronized, overruled, or steamrolled.
I ask if I skip the at-home steroids I'm supposed to take at home before chemo because I don’t want sleeplessness or rage and am sensitive to medication. I ask for the IV Benadryl dose to be cut in half after the first chemo. Before surgery, I ask not to have any extra drugs and a lower dose of anesthesia. When prescribed opioids, I toss the prescription since I’m not in pain. When suffering from neuropathy after one chemotherapy session, I try to enroll in a clinical trial. When my obturator nerve is damaged after surgery, I ask for physical therapy to help the healing rather than wait the 6 to 12 months when it “probably should” heal. Accepting falling, limping, and unsteadiness is unacceptable.
I’m grateful for all I’ve learned from having PTSD for decades. Now, my mantra is the quote on my wall: “When writing the story of your life, don’t let anyone else hold the pen.”
I didn’t always know this. During my early PTSD diagnosis, I was often told, “It’s bad. It’s serious. We know what causes it, but not what heals it or if it will ever heal.”
There was no magic bullet for any of us with PTSD. None. Most of us had to figure out some mix of do-it-yourself and external supports when managing trauma that was not caused by war. There was no linear path for anyone I know, and those most marginalized often got (and still get) the worst treatment.
So I’m not surprised that there are few advances in the treatment of ovarian cancer, a disease that affects mostly middle-aged and older women. But that doesn’t mean I don’t believe healing and cures are not possible or likely just because medical science hasn’t yet found the way.
There’s a need for more and better research, practices, creativity, treatments, and cures. I can contribute. We survivors we must invite ourselves to the solutions table — where we are too often absent — to help advance our cause, health, and life by sharing our expertise. This is true for those with high ACEs as well. Too often, we’re treated as the already damaged and dead and not as people who can lead, change, and be learned from.
The medical model focuses on prolonging life as long as possible, which, on the face of it, sounds positive. I certainly want to live a normal length life, if I can. I hope to defy my prognosis or statistical average. But not at any cost.
QOL — quality of life — was added to my medical file after one oncology appointment. If one wants or needs to keep a job or be physically or emotionally able to parent, this will change which treatment options are suggested. I told the first oncologist I met that I fear lack of agency, choice, and control more than I fear death.
“Write that down and blog on that,” my friend Heidi said, “because it’s not something most people get. To us, losing control feels like dying, or worse.”
“Exactly,” I said, “and not the good kind of peaceful dying… but the terrifying being chased and tortured first, and then killed.”
Survivors of trauma know that to be alive without dignity, safety, choices, and respect can wear one’s will to live rather than support or enhance or promote it. How I get through the treatment of cancer matters to me and all who love me. How will I parent, manage my PTSD, find time and energy for loved ones, work, be creative, laugh, and have enough energy to walk, eat, and savor life right now if I’m life-threateningly sick from chemo? Does it make sense to give up six months to chemo to get two or three or four more months of life? How does one even begin thinking about these things?
Plus, PTSD itself is a risk factor for ovarian cancer as my ex-husband and colleagues shared with me after my surgery. If PTSD symptoms, experienced as an adult, make getting ovarian cancer more common and likely, surely managing PTSD symptoms while living with ovarian cancer makes some medical sense.
Treating ovarian cancer and PTSD, together, figuring out how they are related, even when studies suggest a link, isn’t yet a thing routinely done by surgeons, oncologists, or even geneticists. That’s part of why we increase awareness about adverse childhood experiences (ACEs) and their lifelong impact on health and disease.
We do this with cancer and trauma while symptomatic because we have no choice. We rely on systems for survival but systems need healing and change. The medical system should be an ally, not a foe.
We fight for ourselves and for others because lives should not be shortened, limited, and silenced by ACEs, cancer, and injustice more than they already are. Some people have told me I should save my strength and back-burner advocacy ‘til I’m on the other side of recovery.
That’s not possible for trauma survivors and people with cancer or anyone fighting for life and health. We must advocate for ourselves and each other, and we benefit from those who have gone before us and done the same. It’s where the hope, healing, and maybe even the cure can be found.