Gaining a New Perspective

Gaining a New Perspective

Name: Kristina K.
Type of Cancer: Ependymoma
Diagnosed: 2013
By: Kristina
— Categories: Adult   Brain  

In 2013, I had headaches for months that became increasingly debilitating. My eyes went black when I laid on my stomach to read. I was diagnosed with migraines, but eventually I passed out one morning while helping my children get ready for hockey practice. We learned later that was due to hydrocephalus from the tumor. 

I underwent a 16-hour surgery to remove an ependymoma tumor in my brain, followed by chemotherapy and radiation. In 2017, I started having severe lower back pain and found out that my tumor had regrown in my spine. I had a hemilaminectomy to grade the tumor, followed by six weeks of radiation and temodar, and then a year of daily oral temodar.           

I was incredibly lucky to have only mild residual effects from my treatments.  I have some left-side neuropathy, and I’m tired easily, but I am really doing a lot better than I deserve. Emotionally, my second diagnosis was really hard because I had to convinced myself that by doing the radiation the first time, I was buying more time before the tumor came back. Aside from that, this experience has taught me to choose joy each day and to lean in to my faith and my family.  I wouldn’t wish it on anyone else, but I also wouldn’t trade the person it’s made me for anything.

How This Experience Has Impacted Me

I’ve realized it’s okay to be angry or sad and scared at first, but then tell those feelings you don’t have time for them anymore and choose to be excited each day about whatever you can. Watching the sunrise, reading a book, snuggling with your pet or your kids. Be glad that you get today. Nobody, ependymoma or not, is guaranteed tomorrow.  Surround yourself with safe people who don’t want to tell you about fad diets or essential oils or coffee enemas or tell you that tap water is making you sick. Take the help that’s offered, and spend your time doing whatever you can that makes you feel fulfilled. Set small goals - because after treatment they seem a lot bigger - and work daily towards them. 

My first surgery was in February, and I wanted to walk the Race for Hope in May, during week five of brain radiation.  Even though I had just completed a 10-mile race a few months prior, it took me all three months to work back up to a 5k walk, and walking the race took me almost two hours, but I did it. That goal kept me working and doing my physical therapy every day.

I am so happy to be here. My husband calls this our “bonus time” because after 16 hours of brain surgery, he wasn’t sure we’d have any more time.  I’ve been so blessed to be able to raise money to help research cures for brain cancer (over $35,000 and counting!), to teach and volunteer, and to continue to be with my family.  We recently went to Niagara Falls to celebrate finishing my year of chemotherapy and standing under the falls at the Cave of the Winds, I found myself crying because I was just so glad to be here and to be having that experience. If you can harness the perspective and clarity that fighting this disease gives you, you really can keep going. It’s made my children more independent and compassionate, and it’s made my husband and I appreciate our marriage and time together that much more. I am so lucky to be surrounded by my family, friends and church family who keep cheering me on and helping me choose joy daily. If I need more treatment, I know I have the attitude and a team of people supporting me to handle it.

Hear more updates from Kristina on Facebook and Twitter.

Stay Informed with the CERN Newsletter

The CERN Foundation is committed to informing you with the latest ependymoma news and research. Join our mailing list for monthly updates. View all newsletters