After Years of Searching for Answers, Finding a Brain Tumor

I have thought about what I would say when I purchased my first home, or finally graduated college, or accomplished something that I was proud of. Maybe I’d have another baby, or finally get out of Connecticut. Open the business I want to. Travel to Europe. Do things I’ve dreamed of.

I thought of how I would feel. I carefully thought of and picked out the words to describe the pride and excitement I would undoubtedly feel.

What I never expected to write was how I’d feel after finding out that I have a brain tumor.

I’ve been struggling for the last few days trying to figure out how I actually feel. How do you process that? I feel worry about health insurance, and frankly, that’s about it. I feel dread about having to go back to a job that allowed me to be overworked and make my symptoms worse; a job that, on the other hand, I am immensely grateful for, for had I never been verbally assaulted by an employee and had to take a medical leave for the post-traumatic stress disorder (PTSD) that followed it, I would have never known. The nervous breakdown afforded me the opportunity to have paid time off and deal with my issues and make an appointment to get this pesky ear of mine checked. Hooray, American healthcare system.

Here’s the deal. I’ve been dealing with a lot of strange symptoms for the better part of the last 10 years, all of which I’ve been told would improve if I were to exercise more and lose weight (which has always been a struggle. We’ll get to that later). I’ve been treated for fibromyalgia to deal with the pain, continued visits to my rheumatologist to check for lupus and Lyme’s due to a positive ANA, meds and therapy for depression and PTSD, Botox and therapy for migraines, massage for the chronic musculoskeletal pain, GI doctors for the unusual abdominal pain, cardiologists for the chest pain, ophthalmologists for changing/worsening vision due to working so much the last 15 years — so many visits and tests. You name it, they’ve run it, and it’s all come back “normal.”

When my PCP’s practice sold to a corporate entity, new doctors came and went. One of the new doctors was assigned to me for my annual physical. She told me that all of my problems would likely go away — including my panic attacks — if I would start exercising and doing yoga. What she didn’t know is that I’m a certified RYT-200 yoga teacher, with an Ayurvedic certification, and am more active than most people I know. But because of my size, she assumed I was sitting around eating sticks of butter all day. Needless to say, I never saw her again.

I never realized my hearing was off until a year ago when I started working part-time for an answering service. I’d had a hearing test done a few years before to address the ringing in my ear, but I could hear fine, so they sent me on my way. I would notice this strange flutter in my ear every time the phone would ring, and it would hurt like hell. I always felt pressure in my ear, and like there was water in it, but these noises made it worse. I told my doctor it felt like someone was hitting me with a sandbag in the head, and I would lose my hearing and just hear ringing until my hearing came back. “Huh. Well, that’s weird.” Yep, sure is. So, I just dealt with it. What else could I do?

My right ear, and directly above it, always hurts. I always have a headache. I am, quite literally, always in pain. However, I do yoga, and I eat relatively healthy, and I get massages, and I drink lots of water — and wine — so I tend to keep it in check most days. I am blessed enough to be within driving proximity to two amazing meditation centers, both run by monks who teach about mindfulness and the path to enlightenment. Having spent the last several years visiting both places and practicing meditation, I had found a way to conquer my anxiety, but the pain and the other symptoms never subsided.

I knew it wasn’t anxiety. There are some days that are better than others, but I just deal with it. It’s exhausting being in pain and dealing with this invisible illness that nobody can figure out, and people don’t want to listen to it. Doctors are sick of seeing me. I refuse pain medications and want answers. They could give me pills, but nobody could give me answers. They’d just stare at me, blank faced. When another new physician came into my doctor’s office, and I listed all of my symptoms, she asked why I’d waited so long to say something. I laughed. And laughed. And laughed.

I finally sucked it up and made an appointment with an ENT — again. The first time was a few years ago, and since the hearing test came back normal, they didn’t see a need for any follow up. However. I had a test done a few weeks ago to check the nerve responses in my ears. The doctor noticed an abnormal reading in my right ear, and it alarmed him. He ordered an MRI of my brain. He told me not to worry; there are issues in only about 5-10 percent of people he orders this test for.

The scan showed him what he feared — I have something called vascular loops within my internal auditory canals, which is causing the pulsatile tinnitus, the term for what my other doctors have ignored. Pulsatile tinnitus is something I’ve never heard of nor has it ever been suggested to me. When I read the description of it, it was dead on. Apparently, it’s also untreatable. Wahoo.

The MRI also showed a .4cm tumor on the right side of my brain. A lesion. A nodule.

A freaking tumor.

What does this mean? Where do I go from here? Is it cancer? Does this mean I can get free Starbucks now? Are there member cards? A secret club? A handshake for those of us whose hands don’t grip well? Should I make a bucket list? Do I have to go back to the neurologist and not be irritated that he didn’t catch this the first two times I went there with the same symptoms? Am I going to die? Is this the cause of all my problems, or is it going to be another “well, you have it, but that’s not the actual problem.” Sometimes, I feel like I could walk into my doctor’s office with my entire body set ablaze, and they would look right at me and tell me that the fire wouldn’t have happened if I had just exercised a little bit more.

Also noted on the MRI — an issue with my pituitary gland. Interesting, no? For the record, I haven’t ordered dessert or anything fried or with cheese on it in over 15 years in an attempt to “lose weight.” Do you know what I ordered the day after I found out? Tiramisu. I took three bites and was elated. It’s one of the most delicious things I’ve eaten in the last 15 years.

I have always held onto the idea that we, as individuals, know our bodies better than physicians. I have known something was wrong for the last 10 years. I have gone to people who know infinitely more than I do who have all come up with nothing. I have trusted my health and my future with other human beings, and that is terrifying when you think about it. I have a hard time trusting anyone, but especially doctors, because we are all human. I feel that folks tend to associate medical professionals with being infallible, and while I will never underestimate the expertise of professionals who have had decades of schooling and practice, I firmly believe that, at the end of the day, we are all human. We have to be the advocates for our own bodies and stomp on the ground hard enough and scream until somebody finally listens.

This happened to a very special woman in my life, too. She went to so many doctors, insisting she had a pain in her left breast, advocating for herself until, finally, someone listened. Her diagnosis? Breast cancer. She caught it early, and she is in remission. Thank God she knew to listen to herself.

So, scream. Advocate. Find your voice, and listen to it with your whole heart, and do not stop until the right person listens. While you’re at it, quit that awful job. And for the love of all that is good in this world, order the tiramisu.