What I wish I had known before my husband was diagnosed with brain cancer.
My husband, John, was diagnosed with a grade 4 Glioblastoma Multiforme brain tumor in May of 2011. He was 57 years old and otherwise in perfect health. The only symptom he had was a grand mal seizure, which led to a trip to the ER, an MRI, a biopsy, and the devastating news that his chances of surviving more than 5 years were about 5%.
The day of John’s seizure was the 25th anniversary of the very day we met. John’s cousin, Patty, has been a good friend of mine since high school, and she introduced us, telling me “You need to meet my cousin, John. He has a nice car.” Little did I know her idea of a nice car was a Chevy with manual windows and no air conditioning. Knowing her as I do, I surmised the reason she thought the car was nice was because it was practical, affordable and paid for! She knew I needed stability in my life, and John was nothing if not stable and responsible.
On May 25, 2011, the day of John’s seizure, it was unusually warm and windy. The weather man was predicting severe storms. John and I went out on our deck after dinner and found a huge branch from a tree had been blown into our yard and was stuck perpendicular in the ground. John said “That’s an omen.” Little did we know. Within the next hour, we were in an ambulance on our way to the hospital.
John’s battle with GBM was short and brutal. He had the standard radiation and chemotherapy. We also sought out clinical trials at Duke University’s Preston Robert Tisch Brain Cancer Center, which is one of the top brain cancer treatment centers in the country, and where Ted Kennedy sought treatment for the same type of tumor. Unfortunately, John didn’t qualify for a clinical trial, so we were sent home to try Avastin. Avastin has worked well for some brain cancer patients in improving quality of life and in some cases extending life, but for John it only raised his blood pressure to dangerous levels. After two treatments that resulted in no reduction of the size of the tumor, the medical oncologist asked John if he’d like to “take a break” from all treatment. He knew exactly what she was asking and told her “Yes, I’m at the end of the road.” It broke my heart to hear him say that, but I knew it was his decision. I feel blessed that he was able to make the decision himself. Many brain cancer patients lose the cognitive ability to make decisions about their treatment, but because of the location of John’s tumor (in the occipital lobe), he retained most of his awareness and personality until very near the end. I’m glad I never had to make the difficult decision to tell the doctors to stop treatment, as many family members do.
John survived for 10 months after he was diagnosed, and passed away peacefully in our home on March 31, 2012. Ironically, the only person who was with us when he left this earthly plane was his cousin and my dear friend, Patty. The very person who introduced us. She was with us for our first hello and for our last goodbye.
Like many others who have endured the tragedy of GBM, I wish I had known how strong I really am. When you’re faced with such a horrific disease in someone you love, you know that you will do whatever it takes to help them, comfort them, and ultimately to make their transition to the next world as easy and peaceful as possible. If I had known the strength I would have I may not have been so afraid.
I wish I had known the depth of my husband’s love for me. I always knew he loved me – I never doubted it. But when he was close to death he said things and did things that told me that, even though his brain was being eroded daily by this terrible tumor, our love was what he knew for sure. Once, about three days before he passed, he asked me for a pen and paper. He said, “Maybe it would help if I write this down.” I didn’t know what he wanted to write or what it would help, but he wrote “Julie” – the name he called me, and that was all.
There is no more devastating cancer than cancer of the brain. Because of the very nature of brain tissue, cancer cells quickly spread throughout it, and treatment in most cases is only able to slow the progression of the disease. Treatment can also severely impact quality of life, forcing patients and families to make horribly difficult decisions about what treatment to take and how long to continue it. Recent research into the genetic makeup of individual tumors is showing some progress, mostly by helping doctors determine what treatment will most effectively slow down the beast, and therefore spare patients unnecessary pain and suffering. But there still is no known cause and very few survivors. More needs to be done to understand what causes brain cancer and how to treat it. I hope that someday there will be just as much awareness of the need for research into brain cancer treatment as there is for breast cancer, prostate cancer and the other more common forms of this terrible disease. Brain cancer is not as common as breast cancer or prostate cancer, but it is the most deadly of cancers.
The most important lesson I learned from the whole experience of caring for my husband during this journey is that love is really all that matters. When everything else is stripped away, love is what remains. It sounds trite, and people say it all the time, but I never really knew it in my soul until I felt the depth of the love I had for him, which made caring for him a privilege instead of an obligation. Until I saw that even though his brain was damaged so badly that he no longer knew if it was day or night, or how to use a fork, or where he was in the house, he knew me. He loved me, and he knew I loved him. For that I thank God. Knowing the true power of love has given me a new and deeper appreciation of all of the people in my life whom I love and love me. It’s helped me to understand what is really important.