Appreciating Every Moment

Published in the National National Brain Tumor Society's quarterly newsletter Search

In June of 2000 I found myself in the emergency room, arguing with a doctor. I’d been having severe headaches, and after doing some reading online I was convinced they were serious. If I bent down to tie my shoes, my head felt like it was going to explode. But the doctor insisted it was nothing and sent me home to take ibuprofen. A few days later, I was back in the emergency room. This time, the doctors took me seriously. A CAT scan showed hemorrhaging; I needed immediate surgery.

I was diagnosed with an AVM, which is a cluster of arteries and veins growing like a big bowl of spaghetti. It was bleeding, which was causing the pain. Worst of all: there was a stage 4 GBM hiding inside it. I was 33 years old, and had two little boys just 1 and 3 years old.

I didn’t like the chemotherapy options available to me at that time because I was told they would only add three months to my life expectancy. I decided I would just do radiation, although I briefly participated in a clinical trial but had an adverse reaction and had to drop out.

Since conventional medicine didn’t have much to offer me, I decided to talk with an herbalist about supplements that I could take to potentially fight the tumor. I’ve been taking those supplements for seven years now. I also started eating organically, making sure I got enough sleep, and exercising regularly. I also simplified my life, and gave up my very stressful job as a wildlife biologist. I wanted to do everything I could to let my immune system work well.

I became a stay-at-home mother, which I loved. I put my energy into having fun with my family and the next four years were the best time of my life, because I really got to appreciate every moment. I even climbed Mt. Shasta on the four-year anniversary of my diagnosis, using ice axes and working in a team of climbers.

And then in 2004, we learned through my routine MRI that the GBM had come back. Because the tumor was in my left temporal lobe, there was concern that I might lose my speech. The surgery was done while I was awake so the surgeon could check my speech as he proceeded. I was fascinated by that. I asked him all these questions during surgery. I even wanted to watch in a mirror, but they wouldn’t let me.

The surgery went well, and I was able to start on a long course of chemotherapy this time. Inspired by Lance Armstrong, I decided that I would start running duathlons (where you run, bike and then run more) and mini-triathlons. That summer while on chemotherapy, I ran in eight races.

But one year after being off chemotherapy, the tumor came back again. In February 2007 I had my third surgery. I told the surgeon to be even more aggressive this time, and to remove not only the tumor but a large buffer area. The tumor was about the size of a pea, but he removed an area the size of a golf ball. After surgery I went back on chemo, and I plan on staying on it for the long term.

We were concerned that the surgery would affect my speech, but I can still talk really well. I’m best in the mornings; later in the day, I get tired, and it’s almost as if I hit my word count limit—I use the wrong words, and my comprehension goes down.

It sounds strange, but the time since my tumor was found has been really wonderful, even though everything has revolved around surgery, treatment and MRIs. I appreciate life so much more. It’s like I went from seeing the world in two-dimensional black and white to three-dimensional color. I even wrote a book about my experiences, in which I compared fighting a brain tumor to that day I climbed Mt. Shasta.

My sons keep me so busy and motivated. I want to see them graduate from high school, get married and have children. I never know how long I am going to have, so I’ve learned to appreciate every second that I’ve got.

Copyright © E.G. Communications, Inc. 2014