This is the transcript of my talk at Stanford Medicine X on Saturday, September 17, 2016. I will post the video as soon as it is available–some of the things I say make sense when you see the slides.
Coincidentally, this day was also exactly one year after my first craniotomy.
— Liz Salmi (@TheLizArmy) September 6, 2016
For those of you who have kept up with this blog for a while, this story is not new to you. I want to thank all of you for having my back.
This is my dad.
Three months ago he died. And I have yet to shed a tear.
Before you “feel sorry for my loss,” let me paint a picture for you.
This is my family. Except for the baby in this photograph, my dad was physically abusive to everyone you see here.
He was a cheater. A corrupt “maker of deals” in all things in life. He was the kind of man who only did things for people if it is to his advantage.
And after my parent’s divorced when I was two, he never paid child support. In fact, he almost disappeared from my life completely. I can count on one hand the things he did for me both as a child and an adult. He profoundly let me down in every way imaginable that matters to a daughter.
I was 29 when I was diagnosed with brain cancer. Upon my diagnosis he visited me a total of one times. He also never called me again. He also never sent any cards. And a few years later he declined an invitation to my wedding.
All my life I kept waiting for him to be the father I deserved. But two years ago I had an epiphany: I realized he was never going to be that person, and I decided I would never talk with him again. While he would always be my father, he would never be my dad.
That’s what I did for two years, until I received word last fall that my dad was diagnosed with… of all things… a glioblastoma–the most common and deadly form of brain cancer that has a five-year survival rate of 5%. This is the same type of brain cancer that took the lives of Senator Ted Kennedy, composer George Gershwin, and Delaware Attorney General Beau Biden. This is the same predicted trajectory for my own diagnosis.
You see… Science insists there are no known causes for brain cancer, and not knowing the cause has always been and continues to be a source of serious frustration for me. When I found out about my dad’s diagnosis in an instant I became, we became, outliers among outliers. In that moment I broke my silence and re-engaged with my father.
I am a big nerd and over the last few years I have been keeping up with the latest in brain cancer research. Within 15 minutes of learning about my dad I called Baylor College of Medicine and enrolled us in Gliogene, the global study that’s looking into genetic links for brain cancers.
I threw myself into my dad’s care for two reasons: One: My mom and siblings wanted to help my dad, I knew they needed help navigating this complicated and nuanced disease.
But really, selfishly, I got involved for reason number two: my extreme curiosity of how much this disease may be related to genetics. The scientist in me wondered if the same biology I carry with me, beyond the abandonment by my dad, had manifested itself as cancer.
Gliogene’s preliminary findings are promising, but due to high mortality rates it is very hard to find families who qualify because both family members need to be alive in order to participate in the study.
Oddly, my father’s diagnosis has made me feel more empowered than ever before. For the first time I realized my genetic information might hold valuable stories, or at least some data points that could lead people one step forward in the “moonshot” toward answers.
In the end my dad was cared for by the very people he had profoundly hurt and alienated throughout his life. And so far, my feelings for him remain unchanged.
I waited my whole life for him to be the father I deserved to have, for him to give me his support. Just having my back would have been enough.
In his last days he gave me the greatest gift of all. His cancer made me more aware of my own mortality. It raised questions, sparked curiosities, and forced me to ponder thoughts I would have never allowed myself to consider — such as how I might handle my own end stages when they come.
This person who gave me almost nothing in life has given me so much more with his death. And for this, I am thankful. So there is no reason to be sorry for my loss.
— Beth Toner, RN (@BethTonerRN) September 17, 2016
— EmilyKramerGolinkoff (@emilykg1) September 17, 2016