This morning I had a follow up with my new gynecologic oncologist–he provided me a second opinion about 5 weeks ago when the oncologist I had been seeing called me at a wedding I was attending, just to let me know my pet CT came back positive for recurrence of cancer and I needed to start on immunotherapy. I was horrified, anxious, and angry, but I still didn’t feel quite right about this diagnosis. So I asked a palliative care friend of mine what he thought, and he encouraged me to see someone else.
Back to today: I’m following up with my oncologist who had stated not only am I cancer free but also hpv free, and perhaps I’m adding too much toxicity to my body. He encouraged me to continue my EMDR practice and to listen to my body. I have been off all medications for 5 weeks.
Labs: blood tests are great. No need to continue drawing blood. Urinalysis is great. And I’m feeling lovely.
The doctor told me weeks ago that we’d check in on the anticonvulsants I’ve been on much of my life for seizures and debilitating migraines. Today was the day. He probed for a body check in. I told him I feel better than I ever have before. No seizures, no neuropathy, no migraines. I’m free. Gently, he asked me what I knew about psychogenic seizures. I said I’d read nothing, and began to Google. He quickly followed up with, “you may feel some anxiety about this, but I want you to know this is SO NORMAL.” I don’t have epilepsy very badly, it turns out, and what I thought were seizures were actually physical manifestations of trauma.
Psychogenic non-epileptic seizures (PNES) is a type of somatoform condition common among ptsd patients. Patient presents with a seizure but it is found to not be etiological in nature. When I first heard this, I immediately felt shame:
- Have I been lying to people this entire time?
- Why have I felt the need to fake a condition?
- Do I not trust doctors?
- How are others going to react?
But then, during our palliative care IDT, miraculously enough, the case brought forward was of a young woman with brain cancer who presented with psychogenic seizures. I was able to hear a different story, with providers who gave insight into loving kindness. My body was just protecting me all these years until I was strong enough to face the past, process, and move on.
Now, life poses a different story, a different set of questions:
- When can I schedule skydiving?
- Who wants to go with me to six flags?
- Does that mean I can drink beer again?
- How many cupcakes can I devour before I’m sick?
- Can I never have a seizure again?
It’s magical to me the process of both healing oneself and allowing a higher being to help heal. When we embrace and process through our weak points, our shame triggers, when we embrace and lean into our shadow selves, it’s amazing how transformative it is, that which can be done.
No wonder my pills never worked…
All for now.