Lessons I've Learned from My Brain Tumor: Part 1

Okay, so by now you know that being serious is not something I do well. I’m an optimist by nature, and I don’t like to step out of my happy, little world of rainbows and bubbles. I try not to dwell on anything that might cause frowns and tears, because smiles and laughter are so much more fun. But this blog post has been slowly building for a while now, and I feel like this is an important topic that I can no longer ignore. (I’ve decided to share my whole story, but it's much too long to fit into one blog post, so the story will be coming in installments.)


Brain with Tumor by Philip Bartles

For those of you who may not know, I have a brain tumor. It’s not one of those say-your-final-goodbyes-because-your-days-are-numbered brain tumors. In fact, when the doctors finally discovered it (back in 2002), they explained that it’s actually “as benign as a brain tumor can be.” Unfortunately, there’s no such thing as a completely benign brain tumor. Even the non-malignant tumors can cause problems, simply because of their locations. And mine just happens to be located in the brain stem. And so it interferes, from time to time, with every single system in my body. This is what kept the doctors from finding it for so long.

I’ve always had weird quirks. When I was a kid, my family used to tease me about the way I’d get sick every time we went on vacation or planned some big family outing. It never turned out to be the flu or any “real” illness – I was just “sick” for no apparent reason. My family used to say I was simply “allergic to fun.” I’d laugh it off with them and spend the majority of our vacations curled up in bed with a thick book and a splitting headache.

I was too embarrassed to admit that the reason I always ran out all the hot water when I took a shower was that the combination of the steam from the warm shower and raising my arms to shampoo my hair would cause me to pass out, and that it wasn’t until the water turned cold that I would wake up again. I’d mumble apologies to my family for being inconsiderate and promise not to do it again… And eventually, I learned to take my showers at night, after everyone else had gone to bed, so no one would notice I’d used all the hot water again.

When I was in high school, my childhood asthma reappeared with a vengeance. I had periodic attacks that would come on without warning and last for hours, and the inhaler rarely (if ever) helped. And the breathing issues got progressively worse until, one day when I was in college, I wound up crying in the back of my religion class because I literally couldn’t breathe. I could exhale just fine, but every time I tried to breathe in, it was like a valve was closing over my throat, blocking my windpipe. My Bishop sent me to see a specialist, who diagnosed vocal chord dysfunction and prescribed physical therapy to teach me to control the muscles in my throat that tried to close off my breathing tubes at random moments.

Headaches, dizzy spells, blackouts, nausea, intermittent vision problems, breathing issues, heart palpitations, muscle aches… My semi-serious and seemingly-unrelated symptoms got more and more frequent as the years passed, but by this time, I “knew” that there wasn’t really anything physically wrong with me. I was a hypochondriac, who invented random health problems to get attention. And the only way I’d get over the habit was to ignore my made-up symptoms and keep them hidden from the world. Once I trained myself to understand that people would notice me without my dramatic “health problems,” I’d be able to stop inventing trouble for myself, I was sure.

It wasn’t until my second child was born that I began to wonder if, perhaps, my health problems were real and not the result of a severe case of hypochondria. I knew from experience, after my first child was born, how difficult it can be to lose the excess baby weight… but this time around, I not only lost the weight within days after coming home from the hospital, but I continued to lose weight far too rapidly to be considered healthy. By the time my daughter was 2 weeks old, all of my pre-pregnancy clothes were much too big for me. And every 3 or 4 days, I had to go shopping for a smaller size, until I was wearing the same size jeans I wore when I was in 6^th grade… and I was still losing weight.

People commented on how great I looked, and told me they wished they knew my secret. I was scared, because I knew the biggest factor in my extreme weight loss was the way I couldn’t keep any food down. The only food that didn’t make me throw up was air-popped popcorn. And that’s what I lived on for nearly 6 months.

When I blacked out one afternoon and fell over (breaking my back), I went back to the doctor. There had to be something physically wrong, I reasoned, because I wouldn’t really do this to myself, would I? Two months and many tests later, the doctor declared that there was nothing physically wrong with me. It was all in my head.

And so I tried even harder to ignore all of my “made up” symptoms. If I was inventing these various illnesses, I could control them. I just had to try harder.

A year later, when I blacked out again – this time, when I was home alone with my 2 small children (ages 15 months and 3 years) – I decided to go back to the doctor. I’d tried for years to ignore my hypochondriac tendencies, and instead of getting better, the “imaginary” symptoms were getting worse. And I didn’t feel safe being at home alone with my children. I had to do something! I made an appointment with my doctor, and then I pulled out a piece of paper and wrote out a list of all of my symptoms.

All of them.

And the list took up both sides of the paper.

I felt silly walking into the doctor’s office with such a long list of complaints, especially since I’d been dealing with most of the symptoms for my whole life, so they probably weren’t related to my recent issues. But they might be related to whatever underlying health issue I was facing, so I didn’t want to leave out any vital clues.

When I walked into the doctor’s office, I handed my list of symptoms to the nurse who was taking my vitals. She glanced at it, her eyes widening in shock, and explained that they’d only scheduled me for a 15-minute appointment. I would have to pick one symptom, she said, because that’s all the doctor had time for.

All of my fear, worry, and frustration boiled over into anger, and I shoved the list into her hands. “I’ll tell you what,” I snapped. “You give the list to the doctor and let him pick one symptom, because I don’t know which one is important.”

She left the room in a huff, and less than a minute later, I heard the doctor announce, “Tell the people at the front desk that I can’t take those extra appointments this morning. I’m giving this patient her full appointment time.”

Months later, after I’d visited every specialist imaginable – with doctor’s appointments often two and three times a week – they finally ordered an MRI, as a last resort. But by this time, I was pregnant again, and they had to postpone the test. (There’s no evidence that an MRI is harmful to a growing fetus, but no one wants to take that risk, and so unless it’s urgent, they’d rather wait on tests like this.)

After my third child was born, I went back to the doctor (we’d since moved, so it was actually a new doctor at this point) and asked him to schedule the MRI. He insisted that I didn’t really need this expensive test. “The only thing we’d be looking for is a brain tumor,” he said. “And I’ve studied your medical records. I can guarantee that you don’t have a brain tumor.”

The day after my MRI, he called to apologize. “I never should have guaranteed that we wouldn’t find anything.” – And as it turned out, every confusing and unexplained symptom on my long list could be traced back to this tumor. Because when you have a growth in the brain stem, interfering with the signals your brain tries to send to the rest of your body, it sometimes makes your body behave in strange ways.

My first lesson learned from this brain tumor: You have to be willing to fight for yourself. No one else knows your body better than you do, and you need to be willing to trust your instincts. After years of being told, time and time again “It’s all in your head,” I finally had proof that it really WAS “all in my head!” But that didn’t mean I was making things up!

 

 Read the second part of my Brain Tumor Story here.
Read part three of the story here.