Life after a glioblastoma diagnosis

In 2007, shortly after my 38th birthday, I noticed some numbness in three fingers on my left hand. I didn’t think too much about it. My husband, two daughters and I lived in Alaska, and numb fingers are not unusual. But when the numbness spread to the left side of my face, I made a doctor’s appointment.

Our lives were thrown into chaos when I was diagnosed with a brain tumor, which turned out to be glioblastoma. My husband, Todd, was an active duty member of the United States Coast Guard. We were stationed in Kodiak, Alaska. I taught at the same small elementary school my daughters attended.

My husband and I consulted with three other neurosurgeons who gave us a poor outlook before finding hope and confidence at MD Anderson’s Brain and Spine Center. I had surgery in January 2008, followed by radiation treatment and Temozolomide, an oral chemotherapy used to treat brain cancer. However, the brain tumor grew back by May. The next cocktail of medication worked no better for me. After that, I tried an IV chemotherapy that left me feeling like I had the worst hangover I could imagine.

Finally, my neuro-oncologist, John de Groot, M.D., told me about a small clinical trial testing the effectiveness of a type of oral chemotherapy called XL184. While the study was eventually closed due to lack of effectiveness for most patients, I was one of the lucky ones. The sponsor created a rollover study for us patients who were still receiving the drug and still stable. I have now been stable on this drug for several years, and for that I am very grateful.

Adjusting to my new normal

I do have some long-term effects from surgery and treatment. The hardest adjustment has been weakness on my left side because I was left-handed. My handwriting is awful, but I can still drive. Next, I have osteoporosis and have suffered several fractures. I walk with a limp and a cane, but I can walk. I’ve had two seizures that required hospitalization. I’ve also had pneumonia. However, I know that I am blessed to be able to watch my daughters grow into young ladies and spend more time with Todd. I am very thankful that we found the care I need at MD Anderson. Todd has since retired from the Coast Guard, and we moved back to our hometown in Florida. However, we return to MD Anderson a few times a year for blood tests, scans and a check-up. We enjoy returning to the Houston area and catching up with the friends we’ve made there.

Be kind and carry on

If I could give other patients and caregivers advice, it would be two-fold: First, be kind to yourself. You have enough stress right now, so give yourself a break on extraneous things. I try to get something done around the house every day, even if it’s just loading the dishwasher. But occasionally I am too tired or just don’t feel good. Not a big deal. The dirty dishes will still be there after I nap.

Next, carry on with life. Don’t make your entire life about cancer; it’s just one part of life. My family has always enjoyed travelling. We actually had to cancel a trip to Hawaii because I was in the middle of my initial treatment. However, we have more than made up for it in the years since then. We’ve enjoyed the Caribbean, France, Spain, Germany, Austria and my personal favorite, Australia.

I know I can’t do everything everyone else does on our travels or I run the risk of another seizure. So some days I stay back at the hotel or camp while the rest of my family hike and explore. Although I can no longer earn a living as a teacher, I volunteer as a reading tutor, working with adults who want to improve their lives.

As I’ve learned, you can have a full life after a cancer diagnosis. It won’t be exactly the same as your life before cancer – you have to work harder for it. But it’s worth the extra effort.