Written by Karen Burton
The day that forever changed my life. The day my husband of 29 years was diagnosed with brain cancer. The most brilliant man I know who had helped countless people suffering from back pain and was otherwise completely healthy was just served a death sentence.
Doug was having a persistent headache since Thanksgiving night. He had tried some medications to try and get rid of it but it continued to come back. He was scheduled for an MRI in early February but after talking to a fellow surgeon he cancelled all his cases on that Wednesday and was able to get the MRI moved up. Never in a million years could I have predicted the news he shared when he came home from his MRI. The test showed he had a grade 4 glioblastoma (GBM) with a life expectancy on average of 12-15 months, about 1% of people live five years. He would need surgery right away to remove as much of the tumor(s) that they could. We did not know what the outcome of that surgery would be – if he would still be able to walk, talk, etc.
We sat and held each other and cried for what seemed like hours. I was filled with all kinds of emotions. Not only was I filled with deep sorrow but I was also terrified. How was I going to do this life without him, my best friend? I had always assumed we would grow old together just as both of our parents were. It seemed unlikely that he would be alive to see his children get married and have their own children. I would be a grandparent by myself. Would he survive to celebrate our 30 year wedding anniversary in July and if so, what kind of physical shape would he be in? We had been Doug and Karen since we started dating in January of 1992. When he was gone would Karen disappear? How was I going to pay the bills? Would there be enough money? Countless questions were circling in my mind.
Telling our three adult children the news was brutal. My heart hurt all over again watching them hear the news. Children look to their parents for assurance that everything is going to be ok. In this situation and at that time there did not seem to be much hope that things would be ok.
Doug’s surgery went well and he tolerated the standard treatment for a GBM but we knew that his prognosis was still grim unless we could find additional treatment options. Thankfully, we were able to find those treatment options through his fabulous doctors at KU Med and Duke. The side effects have been minimal but he still needs me to be his caregiver. The first 18 months after diagnosis there were falls, extreme exhaustion and a seizure. We travel frequently for treatment and I am so thankful I have been able to accompany him on all of the trips.
In the spring of 2023 our daughter Natalie mentioned to us that there is an organization that had started in Kansas City called Head for the Cure and they hold a walk each year to raise money to help the community of brain cancer patients, their family, friends and care givers. She thought we should start a team for Doug called Burton Strong. This would give us and our friends and family a way to help this community of people of which we were now members. Since that day we have been very involved with Head for the Cure and are so appreciative of the work they do and the friendships we’ve made with the staff and other brain cancer patients and families. When dealing with a diagnosis that you have never heard of and for which the prognosis is horrible, Head for the Cure is like a bright light at the end of a very dark tunnel!
It has been 32 months since Doug’s diagnosis and I am counting my blessings of which there are many! Doug is still alive and doing well, thank God! He was able to walk our oldest daughter down the aisle last summer and plans to walk our second daughter down the aisle this fall. Our prayers are being answered! Our friends and family have shown our family so much love and have lifted us up in ways that I could never have imagined. We have been able to seek alternate treatments which so far are working! He has had 21 months of stable MRIs and has greatly surpassed the typical life expectancy of a patient with a GBM!
So many people have “diagnosis days” when they learn the cancer diagnosis of a loved one similar to our story. It is positively devastating! Our family, friends and faith have helped us tremendously to restore our hope in all kinds of amazing ways.
Our lives look very different now versus before Doug got sick. Our relationship has grown and our love has deepened. I have learned many things from this journey a few are: Lean into your faith and your friends and family. Accept help when it is offered. Accept the fact that tomorrow is not guaranteed. Live each day to the fullest. Love can withstand countless challenges. God is with you every step of the way. Be grateful.