Living with Uncertainty

 

Hi, my name is Katie. I have a brain tumor — please don’t be shocked. It sounds worse than it is.

Or maybe it really is as bad as it sounds. It is hard to tell people you have a brain tumor. Sometimes they get a glazed look on their faces. I get it. I feel that way too. I have been walking around for almost 10 years with the knowledge of this diagnosis — a tentorial tumor that doctors think is benign. That amount of time gives you time to “pooh-pooh” the diagnosis and, simultaneously, become as paranoid as possible and be driven crazy by the implications.

Talking about it helps even though I grew up in a German-American household where illness wasn’t talked about. My father had a heart attack and a transient ischemic attack — and a carotid endarterectomy and open-heart surgery. When we would visit his father, he would wear a turtleneck to hide his scars. I don’t think his father ever knew his son went through this. More recently — and extremely impactful to me — I tried to visit my Aunt Anne, and she wouldn’t let me. It turns out she was sick, and lived alone, and perhaps was ashamed. She passed away from lung cancer that spread to her back and to her nervous system. I never got to see her before she passed, and it saddened me.

I had been looking for an outlet several years ago to deal with some of my feelings of confusion and anxiety at my own diagnosis. Of all places, in my Facebook feed, I found a link about an Express Yourself Creative Writing Series given by the Curb Center and the Vanderbilt-Ingram Cancer Center. But I felt, “Oh no, I don’t have cancer.” I thought of my brain tumor, and really how cancer-like the impact is. I threw caution to the wind, and emailed them and explained that I have a brain tumor, suspected benign, and would love to join if I could. I was told, yes.

The writing class has changed my life in so many ways by giving me what I think all people need desperately in the wake of an illness: hope, and a focus to keep you going through the inevitable difficulties.

I am going to go backward for a moment and give you a glimpse of how a healthy 41-year-old finds out she has a brain tumor. Oddly enough, there could be a chickenpox connection. When I was 5, chickenpox developed into encephalitis.

I miraculously recovered, but not without long-term brain effects. My vestibular system, which controls my balance, gait and spatial perception with movement, was affected. But with my young age and the brain’s plasticity, I recovered relatively well with the brain’s ability to compensate.

When I was in my late 30s, I noticed something felt amiss. My balance was not right, and I was having vertigo. Balance testing confirmed I had a central vestibular disorder. The sensory system between my brain and ears responsible for balance and spatial orientation was not working properly.

I underwent vestibular rehabilitation, but unfortunately it really didn’t work. After more testing, doctors determined I needed an MRI. That’s when they found the tumor. They discussed the possibility that the tumor might have developed as the result of damaged tissue from the encephalitis, but in the end they really don’t know.

Finding out I had a brain tumor in 2008 was like an out-of-body experience. I was in shock, but before going in for that first MRI, I had put a note in my work calendar that I had felt I had one of three things — multiple sclerosis, arteriovenous malformation (ruptures that cause bleeding in the brain or spinal cord) or a brain tumor. I felt no happiness at guessing it right with the brain tumor.

During my first appointment at Vanderbilt-Ingram Cancer Center, my neurosurgeon, Dr. Kyle Weaver, gave me the best advice ever. To this day, I replay the words when I get too overwhelmed: try and be happy every day. Those words have helped me live with uncertainty.

We agreed that watch and wait was a good path to be on with this tumor.

After the first three MRI’s that were done in a short time to determine the current growth rate, the consensus was that it was a probable benign tumor. I felt a bit better because at least it wasn’t malignant or a tangle of vessels waiting to burst at any moment. But still, the tumor is in an area of the brain that isn’t easy to get to, making its removal difficult.

The tumor I have is called a tentorial tumor — on the membrane between the upper and lower portions of the brain.

Someone recently asked me, “How did you get a brain tumor?”

“Bad luck,” I answered.

How can you live with uncertainty, and be happy? For me, it really seems hard with this seemingly dark and dismal diagnosis, and with my ongoing vestibular problems that can make me really disoriented and feel out of sorts. I would be lying if I said I was successful every day at this quest for finding happiness. I wouldn’t be human if I didn’t have anxiety and worry about all this.

I have a beautiful young daughter. I want to be there for her, and I want to feel well. I want to be able to run around and play with her.

Nights are the worst to worry about things. Absolutely, the worst. I do try to continually come back to that focus of trying to keep happy. It is like each day is a blank slate, and I can fill it how I wish. Tomorrow I can do it again. Only things that are really important go from today’s slate to tomorrow’s slate — anyhow, you can’t pretend that each experience every day doesn’t affect tomorrow’s tapestry. But still, there’s a possibility of a new slate with each sunrise. I think we can choose to have a new, fresh perspective each day.

Besides the amazing writers group that I have became a part of, which has allowed me to explore my love of writing (before the class I was so blocked that I could barely keep up with writing in a journal), I have embarked on some other endeavors that I have always wanted to do.

Since I was 15 years old, I wanted to be an artist. My career prior to having my child was in health information management. Now, I had the chance to explore my real interests so I took some classes in drawing at the Sarratt Art Center at Vanderbilt University. Then I figured since I always loved interior design I should take an online interior design course, which I completed in a year. Then I decided to take painting classes, which I still do, at the Centennial Art Center. After that, I decided to take an online personal stylist course.

Working with an online marketplace, I have adorned clothing and accessories with images from my paintings. It has been an adventure. I have learned new things and kept my mind busy.

All these ventures have made a wonderful tapestry of happiness and a place of calmness for me. I wrote a piece for the Curb writers group about turning worry mountains into worry clouds so you can imagine them just floating by.

I know that my story of this tumor is not over. A slow-growing tumor is still a growing tumor in my brain that doesn’t belong there. With watch and wait treatment, there is a sense that this time will come to a close, and the tumor will have to be addressed in a more definitive manner.

Every year when I get that scan, I am nervous, especially if I have had a year of unexplained, strange, new symptoms. I am not gunning for brain surgery. I know the risks and want something done only when it is the right time.

I take it day by day and year by year. I am 50 now, and it has been awhile since that day in 2008 when I was diagnosed. A ticking clock is the only way I can describe this journey. Sometimes I cry out to the universe, and say, “Why, oh why, did I get a brain tumor?” There is no answer. I just need to live my life day to day.

My journey and my illness are individual to me, I realize. All of our illnesses are individual, and our support systems are different. I have worked to carve out areas of support in my life. The writers group has been a great one. I am an avid exerciser, and sometimes just seeing the same people over and over at your traditional jaunts becomes kind of a support system. Little things like that anchor me.

No one has certainties, and we just fool ourselves into thinking there are certainties. I think we can continually choose to see our plights as part of the journey. Grounding yourself helps — and each person’s grounding is a different thing. Each day and each moment, take a breath and find that unique place of peace.