What I wish I knew before my late husband was diagnosed with a brain tumor…
|My husband, Steven, was diagnosed with an incurable brain tumor on February 12, 2009. We were blindsided by this news – his primary care physician said the MRI report showed a cyst or abscess and sent us to a local neurosurgeon. We sat in the examination room prepared to hear that it was nothing to worry about…..what we heard was “you have a malignant brain tumor”…and then all I heard was “wah, wah, wah” (similar to what the adults sound like in the Charlie Brown holiday specials on TV). Sharing the news with our children, other family members and friends was excruciating – how do you tell a 12 and 16 year old that their father has a mass in his brain that needs to come out? We spoke carefully with our children and gave them only the information necessary – Daddy has something in his brain and will have surgery. He will be fine! Not sure if they bought it or not, but they have both shared that they were grateful that we didn’t go into further detail with them and were optimistic about the outcome and longevity of Steven’s life.
I kept to myself for quite some time as I needed to muster my strength and hope in order to keep him with me and our children for as long as possible. I did extensive research on the disease and its treatments. I traveled back and forth to Duke’s brain tumor center and hospital with Steven, and I tried to maintain our lifestyle and acclimate to our new normal. At the suggestion of our clergy, I created and maintained a Caring Bridge page so that family and friends could follow our path. When, after 7 or 8 months post diagnosis, the myriad of emotions coursing through my body became more than I could handle I finally sought out others who could possibly understand my experience. I began an online search for support groups. I came across a few but www.cancercompass.com drew me in. It was there that I found so many who seemed to be living my life – my beautiful, yet painful life. A life of uncertainty, a life of hope, a life of fear, a life of “this can’t be happening” and “nobody knows how I feel deep in my heart, nobody!” I no longer felt isolated as I shared my own stories, asked my own questions and provided answers and comfort to others. Once I allowed myself to open up to these women traveling this same and yet different journey, a life-long bond was formed – a sisterhood. As author, Rachel Naomi Remen wrote “Everyone alive has suffered. It is the wisdom gained from our wounds and from our own experiences of suffering that makes us able to heal. Becoming expert has turned out to be less important than remembering and trusting the wholeness in myself and everyone else. Expertise cures, but wounded people can best be healed by other wounded people. Only other wounded people can understand what is needed, for the healing of suffering is compassion, not expertise.”
Steven and I already knew that there were many gifts that come with a cancer diagnosis – yes, you read this correctly, there are gifts, but one has to be open enough to recognize them. The gift of waking up beside one another each morning and going to sleep together every night. The gift of sharing our love with each other and our children. The gift of being able to say all the things we wanted to say (of course, there is never enough time to say it all but we shared a lot with one another over those 22 months), and the gift of being part of a community – a brain tumor community. I cannot imagine how I would have managed through the remaining year of Steven’s life, as well as after his death, without my GBM soul sisters. English novelist, Mary Anne Evans, better known as George Eliot said “What do we live for, if it is not to make life less difficult for each other?”
One cannot travel this road of illness and caregiving alone… it takes a village, truly. I am eternally grateful for my internet village and my local village. As I write this six and half years years post diagnosis and four and half years after Steven’s death, I still recognize the blessings that come with this life I am living. My local community and my internet family made life less difficult and offered me refuge when I needed it most.
For anyone caring for a loved one with a life threatening illness, you do not need to struggle alone. There are those waiting in the wings wanting to help, love, support and guide you. Be gentle with yourselves as you learn to navigate your “new normal”. There are so many just like you wanting to be comforted and wanting to comfort. Trust that your journey will bring you to those people.