If I knew that GBM was the monster it is when my husband was diagnosed, I would have done things differently. I am not sure how most life insurance is written, but ours is such that if the doctor puts in the patient’s chart that they are “very seriously ill”, you can get benefits from the moment those words hit the paper. I really wish I had known to request half our life insurance. I didn’t know. The prognosis alone was terminal. Isn’t that, by definition, very seriously ill? If I had only known to ask to read his chart. If only I had known that was a possibility, we might have had more time and finances to dream big dreams. I have always told my children, “money doesn’t matter people do.”
As a family we were in “shock and awe” mode. It was a huge blessing to be a part of and to be across the street from the NIH where we had access to the experts in this field. It was three days after Christmas when he had his biopsy. It was my birthday when we got the diagnosis. As with all of my GBM sisters, there is a battle that never seems to end. It is a battle for life, for treatment to extend life, a battle for quality of life, a battle for time, a battle to find the words, a battle to stay close to keep those who want personal closure from stealing your time and your energy.
I lived in a bubble of “how can I get more time for the children and myself?” If only I knew the written diagnosis of “very seriously ill” could have opened doors to benevolent groups. They could have helped us find a safe way to see Europe – something he really wanted to do. If only I did what the nurse told me prior to the biopsy – take him for a romantic weekend at a posh hotel. I thought she had to be insane. Who could be romantic in the face of this unknown thing in his head? But we could have had just time to hug, sleep in the shape of a spoon, and to cry. We could do none of those things. We had two teenagers, home schooling, one full time job, one part time job, a house, three cats, three fish, a ballerina, and one angry child. If only I had the insurance money, or at least the half I could get at the onset. There was a lot of help out there if the doctors had the strength to write down the truth.
If I had that knowledge, I would have had help to get family and close friends to visit him without any expense to them. That would have helped me not have to dodge all the “whys” and the questions after some found out. If only I had the strength of spirit to put my husband in a tux and my teenage daughter in a gown. To take advantage of the offer to photograph them walking down the aisle in the hospital chapel. If only I had done that, she would have those photos and videos for the day when she actually does get married. If only I had done that. If they had told me he was very seriously ill on paper on his chart. I heard the words and read the internet sites.
If only it wasn’t so unbelievable to hear Glioblastoma Multiforme. It was my birthday after all. We were aware that the diagnosis was coming, and it took weeks longer than estimated. We prayed and hoped but as time passed we began to feel that heavy heart. If only I had the Facebook ladies to walk me through this. If only I knew how many have walked in my shoes. You feel alone in that moment. In a box, where all around you, people are talking, explaining, offering tissues. Time has slowed to a thick, “hard to breath and swallow” pace. Vision is blurred through tears that coat your eyes and fill and fall as they go.
If only I could have gotten my husband to start writing “those” letters early on while his mind was still sharp. If only I could have video taped his messages to the children. If only I could have bagged clothes he had worn in Ziploc bags to preserve his smell. If only I had believed from the beginning that he was passing – each day just one more closer to heaven. I have faith and hope in my Eternal Father. I know His Word is true. I know I will see my husband again.
I have cared for two other cancer patients before this. My grandfather moved in with us as newly weds and died in our home three years later from prostate cancer that metastasized to his bones. Ten years and 13 days later, his daughter, my mom, died in my arms after battling stage four colon cancer. Seven years and seven days from her passing is when we saw the MRI of my husband’s brain. If I had just looked back and pushed aside the shock and pain to know that his diagnosis would have no good outcome.
He was the love of my life. We should have dropped all normalcy and done whatever he wanted for as long as he could. If only I had known …..You can read, you can listen to others in the know….but you have to really know it yourself deep in your core. You need the strength of Samson, the resolve of a warrior, the brain of Einstein with the wit of Ben Franklin.
We are only human and made up of the way we were raised and the faith we have been taught. We hold fast to those truths. I would have done so many things if I had only known. I did the best I could within the parameters of what I was given. I guess my hope is that there was an abundance of love for him and he never lacked for love. I didn’t give him castles in England, Germany or France, but God has his castle in heaven and my love lives there. I will see you one day, my love, and much later our children and theirs…..Happy Anniversary, Ken. 06/08/1991. I will always love you.