These are the words I recently heard from a medical assistant at a neurologist’s office. After providing my extensive paperwork that listed all the medications I was taking, as well as my medical history, this girl was irritating the hell out of me. She kept asking for information that I clearly stated on the medical history form — a form that I was not-so-politely told by the receptionist when making my appointment that I had to bring to the appointment.
In regurgitating my medical story in the five minutes or so she spent with me, I had to relive my breast cancer diagnosis and treatment, as well as tell her about my PTSD medications. Then she looked at me with amazement and said with glowing admiration, “I bet you’re proud you beat cancer.”
I thought I heard it all, but apparently I haven’t. I wish I could’ve told her that I didn’t beat cancer, that cancer had beaten me up pretty badly, and no, I’m not proud of myself. Survivorship thus far is great, but it’s not as easy as some people think.
And no, I’m not okay.
Instead I said nothing and awkwardly looked down at the floor. I was too afraid to think about educating this woman, who probably meant well but missed the mark anyway. My anxiety was understandable — I was seeing a neurologist for the first time.
I’ve been having issues with balance for years now, but it’s lately been getting worse. I first noticed balance problems after chemotherapy, and I realize they could have been made worse by psychotropic medications, which started shortly after cancer treatment began. It’s really difficult to pinpoint what exactly is causing me to have balance problems. I can take long walks, no problem, but it’s easy for me to lose my balance. Stairs are scary to navigate because I’m afraid I will fall one day. And with osteopenia, I’m afraid I will break a hip prematurely.
I’m too young for that shit.
So here I was — after talking to the well-meaning-but-clueless girl — talking to the neurologist, who was generally nice. She said that the medications could very well be causing all the problems, but just to make sure I’m okay (did I mention, I’m not okay?), she ordered several blood tests and a (gulp) brain MRI. She kept asking me if my cancer had metastasized and I kept saying “Not that I know of.”
Now I was really afraid.
But I still felt comfortable enough to confide in her. I told her I have never been the same since cancer treatment. And that since treatment, I have felt I’ve aged a lot and am fatigued. And while my problems with balance could be caused by other factors, cancer treatment took a toll on my body and psyche. I saw from her glazed expression that she was skeptical. I was bitterly disappointed, for I realized that many in the medical establishment are in denial over the damage cancer treatment causes.
While the neurologist examined me, she made no effort to realize that she was evaluating a person, not just a medical problem. So I left the office without emotional validation, just an order for blood tests and the brain MRI. I went to the blood lab that day, but I still haven’t yet set up an appointment for the brain MRI.
I’ve balked about the MRI because, frankly, I’m scared shitless. In addition to having anxiety during this test, I’m afraid the MRI will find one or more of the following problems:
* Cancer mets to the brain
* A benign tumor
* Early onset dementia
* Multiple Sclerosis
* Brain damage from chemotherapy (which will be denied, of course)
I’m sure there are more possibilities, but I refuse to ask Dr. Google. Talk about a virtual mind-fuck. No second helping of paranoia please.
I will be setting up an MRI appointment as soon as I post this. In the meantime, I will be doing some core-strengthening exercises that a Twitter friend recommended and some mind-strengthening exercises with my psychotherapist.
I realize that one can be afraid and still act anyway. That’s true courage. That’s what I preach in my book, Calling the Shots in Your Medical Care. I need to take a page from that book — OK all the pages of that book — and embrace the flames of courage.
I once again must I practice what I preach.
Have you ever felt unheard or dismissed by a doctor or other medical professional? I would love to hear your stories.
I would appreciate any words of solace or encouragement.