I was diagnosed with clear cell adenocarcinoma of the ovary, aka ovarian cancer, when I was 31 years old. That’s not the point of my story.
I was told I was going to have chemotherapy and lose my hair. Still not the point of my story.
I had three surgeries in three months, including a hysterectomy which rendered me unable to ever carry a pregnancy. That’s not the point of my story either.
My story starts around my fourth chemo treatment when, if cancer wasn’t enough bad news, things started to go very wrong. I got lost in the everyday shuffle of healthcare.
In 2014, I was scheduled for one chemotherapy treatment every 21 days for a total of six rounds. A day or two after my fourth round of chemotherapy, I called my nurse advice line complaining about vertigo, blurry vision, ringing in my ears, and a terrible headache. Although I reminded the person on the other end of the call that I was in the middle of chemotherapy, I was instructed to go see my primary care doctor in internal medicine. So I did. But before I made that appointment, I called my medical oncologist (the one who is in charge of my chemo). He said he didn’t think this had anything to do with my chemo treatment and said the same thing as the nurse on the advice line, go see my primary care doctor.
Although I had been seeing my primary care doctor for about six years, he didn’t know me from the next patient. When I wrote him an email to tell him about my cancer diagnosis months earlier, I never received anything back.
As many people have experienced, my primary care doctor was unavailable for an appointment, so I saw the next available doctor. After evaluating me for a few minutes, she instructed me to see a physical therapist for the vertigo. Because of the cancer and chemo appointments, I basically became a professional appointment attendee. It was like a part-time job at this point. But off I went, reluctantly, to the physical therapist. I kept asking myself, (and the doctors) how could this possibly not be related to the chemo?
At this point I should mention that I did have a chemo case worker who was great. I think she was intended to be there to support my needs during treatment. She did a wonderful job most of the time, but if patients didn’t follow the chemo script like me, I got the sense they didn’t know what to do. I did call her many times during this questionable period but because I fell into an “outlier” category compared to other patients, she just didn’t know what to do with me.
I went to the physical therapist who did their usual twister routine treatment for vertigo patients.
I went to a neurologist who told me I might be permanently going blind. (At this point I was wearing an eye patch on one eye because my blurred vision was so hard to handle.)
I went to an ophthalmologist for tests—so many tests.
Finally the ophthalmologist found something! They called it “pseudo tumor cerebri”, or optic nerve swelling. Although they found it, they couldn’t tell me what was causing it. I’m not a doctor but I had a pretty good guess—chemo.
After three months and many more appointments with the ophthalmologist, they finally said I was a tricky case and sent me to a hospital where tricky cases are usually sent.
The neuro ophthalmologist who takes tricky cases diagnosed me within five minutes of meeting me. Hallelujah. I found someone who had not only done their research, but they had seen this condition before. As I suspected, one of the chemo types that I was being treated with is known to cause optic nerve swelling, which includes vertigo, headaches, blurry vision, and ringing in the ears. One prescription from him and my symptoms immediately started to subside.
All the running to appointments, copays, the phone tag with nurses, missing work, the not knowing what was wrong with me for three months was brutal. I felt that I got lost in the system because the symptoms and side effects I was experiencing didn’t fall into one category.
Had there been case workers who weren’t overworked and overloaded with cases, I might have been looked at and treated as a human who needed help, not another case file that gets pushed around from office to office. I want to know why the healthcare system have to be so cold.
It shouldn’t be a secret that we as patients have to speak up when we want to be treated like human beings.